Diabetes Connections with Stacey Simms Type 1 Diabetes
The T1D news show you've been waiting for! Long-time broadcaster, blogger and diabetes mom Stacey Simms interviews prominent advocates, authors and speakers. Stacey asks hard questions of healthcare companies and tech developers and brings on "everyday' people living with type 1. Great for parents of T1D kids, adults with type 1 and anyone who loves a person with diabetes.
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The Magic of Disney, with Type 1 Diabetes (Classic Episode)
04/15/2021
The Magic of Disney, with Type 1 Diabetes (Classic Episode)
A Disney vacation can seem overwhelming, even without diabetes. Add T1D to the mix and going to Disney World or Disneyland seems like it may not be worth the stress. This Classic Episode has great tips and advice to have fun without slowing down (much) at the Disney Parks. Stacey is joined by she has three generations of type 1 in her family. We talk about dos and don't for getting a disability pass (and how to decide if you need one), making do without carb counts and managing everything from hydration to ALL the walking at the parks. This episode first aired in December of 2015. ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode Transcription (beta version) Stacey Simms 0:00 This episode of Diabetes Connections is brought to you by inside the breakthrough, a new history of science podcast full of Did you know stuff? Announcer 0:13 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:19 Welcome to another classic episode of the show. As always, we're really glad to have you here. And these episodes, give me a chance to take a look back at some of the real early interviews we did here on the podcast, you might have missed this one. From December of 2015. All about going to Disney World. A Disney vacation is really like no other. And not only is it pretty expensive, but to get everything you want. You really need to have a plan. Seriously, have you been there, you need a plan. Now I have to tell you true confession. I am a bananas, Disney planner. I absolutely love planning trips like this, this may not be your cup of tea, maybe you're somebody who just goes with the flow. But I really think that if you have diabetes, you know if your kid or you as an adult, are going on a vacation, where you have to do this much walking this much line waiting, although we don't wait in lines, and I'll share my secret in just a moment. This much weird food or strange food, the whole Enormousness that can be a Disney World vacation. Once you add diabetes to the mix, there's a lot to think about. That's why I was really excited to talk to Robin Adams. She is a Disney planner. She's a travel agent, she also runs a really big group that goes to Disney World there. They're on Facebook as well. She just knows her stuff. She also has a husband, a son, and a father in law who all live with type 1 diabetes. And as you're listening and planning vacations, you know after people have been vaccinated, and things are starting to open up again, as you're planning vacations and trips and you know, going back to Disney parks, or maybe the first time you're going I really hope this episode will help. I have to tell you though a little bit about my planning and why I am the way I am and I kid you not we really do not wait in lines. My family has been very lucky. We've taken several big trips to Disney World. We haven't been to Disneyland. But we've been to Disney World several times, not including quick trips. My parents are two hours south of there. And we do go to the friends for life conference which is in Orlando in July usually. So I'm not counting that because that's not a true what I would say you know, Disney couple of days or even a week in the park, that kind of thing. vacation. The very first time we went was with Lea was just four years old. And we just went for a day. We didn't even take Benny he was one left with my parents. We drove up from their house took that to overdrive. We ran all over the place. We had a great day it was in January, it was cold. So you know there really wasn't anybody there. But we met princesses. We had a princess dinner and then we headed home. So that was the first time the second time when I took both kids. I didn't plan well at all. We arrived at one o'clock in the afternoon during spring break. Those of you who have been there and done that are either laughing at me or horrified. I've never seen that many people in one place in my entire life. We got to the Magic Kingdom at one o'clock. And it was so crowded. I didn't think we'd be able to move. And I was really concerned for my kids safety. We stayed I want to say an hour, I think we did. I don't even know if we went on a ride or did anything or saw parade. I think we saw one parade because we were just stuck there on Main Street. And then we left and we spent the afternoon at our hotel with the pool, which the kids thought was the greatest thing ever. I mean, they had such a fun time in the hotel. And then the next morning, we woke up super early and got to the park, I have a picture of us on the first boat from the Wilderness Lodge resort. And the moon is still out. I mean, we got to the park as it opened, you know, and it was spring break. So it's probably open at seven o'clock that morning and had a great, great three hours. And it was amazing. And that was the beginning of my Disney planning. And I have never gone back without a better plan that I'm going to talk more about it after the interview. Just some tips and tricks that I can share with you diabetes aside what I think you can do to make your vacation a lot more fun and make your money go further. But that is neither here nor there. We will get to Robin Adams to true Disney with diabetes expert in just a moment. But first, this episode of Diabetes Connections is brought to you by inside the breakthrough. If you're intrigued by science, you don't get excited about the process of discovery and want to have the best stories at your next dinner party. This is the show for you. In the current episode they're asking and answering just snake oil actually contain snakes. Host Dan riskin is phenomenal. He is very entertaining and he really digs deep into these stories search inside the breakthrough anywhere he listen to podcasts. It'll be wherever you found this one. And this podcast is not intended as medical advice if you have those kinds of cases. Please contact your health care provider. My guest for this classic episode is a travel agent, a Disney planner and the organizer of the diabetic Mouseketeers event. And that is happening this year, Memorial Day weekend, I will link up the information from her website. And you can learn more about how Robin Adams wants you to meet families share stories and experience the magic. It was excited to talk to Robin not just for the Disney experience here. But also because as I mentioned, she has three generations of type one in her family. So she really knows her stuff. quick heads up, we spend the first few minutes of this interview talking about her family and those three generations. If you're just here for the Disney stuff, then you should fast forward about seven, eight minutes in that we pick up the advice for going to the parks. Robin Adams, thank you for joining me. Welcome to Diabetes Connections. Robyn Adams 5:59 Thank you for having me. Stacey Simms 6:01 Before we talk Disney and we're going to talk a lot about Disney. Let's talk about about you tell me about your Diabetes Connections. Because this isn't just your child, your husband has type one as well. Unknown Speaker 6:12 Yes, my husband had been married to for 19 years was diagnosed when he was 12 years old. So it's been an you know, part of my life for I've known him for 21 years now. So it's been there for a very long time. And then our son was diagnosed at age four, after we've been married for seven years. Stacey Simms 6:32 What's that, like, from your perspective, and I'm sure your husband's is a bit different too. But when you have lived with type one with your spouse, but then your young child is diagnosed, how different was that? Robyn Adams6:45 It was very overwhelming because the way we handled it in our marriage is my husband already had a mother. So therefore, I did not mother him I did not hound him. I did not say Did you check your blood sugar today? Are you supposed to be eating that? You know, I had no involvement whatsoever. He handled everything. Then there's also the drawback to that in the essence of I didn't really have a fully under standing of the disease. Because I was, you know, I was always kind of at an arm's length distance a little bit out of respect to him. Because I didn't want to hound him. I didn't want to stand on top of him. And you know, mother him basically. So we always kept there a little bit of distance. So when my son was diagnosed, Rob was still doing it the old method of three shots a day, using two different types of using the in in the art, he was doing the old fashioned mph method. Wow. And so he was not carb counting. He was not on a pump or anything. So when my son was diagnosed I was I literally had this fear, go through my head, oh my gosh, we're gonna get divorced, I'm going to kill my child. I don't know what I'm doing. No clue whatsoever. And since Rob was doing it, the old method, it actually was a crash course for both of us, which was wonderful. And honestly, diabetes did nothing but bring our family closer together. It gave me much more insight as to how it affected him day to day. He helped me see what my son was going through. And just he really helped to keep me grounded from not overreacting to certain things to show him that yes, he can survive. Yes, he can do this. It's okay. Not hovering, and just helping him live a full and enriched life because that's what Rob did for years and years through college. He was an avid rock climber, camper, hiker, everything. And he did all of that on, which kind of astounds me doing it on the NVH method, and not carb counting kind of overwhelms me with that thought. Yeah. Wow. So Stacey Simms 8:57 did he change his diabetes management at all, seeing what your son had access to? Robyn Adams9:03 Well, it was interesting the day that Robert was diagnosed, that Robert was diagnosed on a Tuesday, Rob was at his doctor on Monday right before getting fitted for his pump. Wow. And they he was supposed to be in his own carb counting education class Tuesday afternoon. Well, at that point, we are admitting Robert into the hospital for diabetes. And we had he had asked his doctor the day before he had said, we're starting to see a few signs and robber what, what do we need to do about this? And the doctor said, we'll go ahead and take a fasting blood sugar the next morning. And so we did it. We've checked Robert blood sugar ever since he was six months old. I checked it every six months pretty religiously, just keeping an eye on it. And but I tell you that one morning that was the hardest blood sugar to check because we had actually started seeing signs at that time. And we knew for a fact that's what it was and We checked his blood sugar was 158. And we called the pediatrician. We call him my husband's endo, and said his blood sugar is 158. And the guy said, well, that's not too bad. We said, this is fasting blood sugar. I said, Amy, call your pediatrician right away. And by the time we got into the pediatrician, his blood sugar was 425. And we were off to Scottish Rite. And that was it. Stacey Simms 10:23 Now, from your son's point of view, though, you're four years old, and your dad has type one. And your dad is about to be doing the carb counting classes and the pump classes and a lot of things that you yourself as a four year old are going to be going through. Was he kind of do you think he thought at any point? Well, everybody's dad, everybody goes through this. Robyn Adams10:41 Already? That was cool. Oh, yeah. He can't wait for me to be diagnosed. Yes, Robert, is now 12. But uh, you know, for years, it was the topic of conversation of Okay, Mom, what are you gonna have diabetes? What are you gonna join our club? Yeah, he doesn't under you know, he understands. But at the same time, it's like everybody else has it. Why don't you you know, and see on top of that, to my husband's father also has type 1 diabetes. Wow. So it's just it's a family tradition for this whole sailing. And Robert is waiting for that shoe to drop for me. That's funny. We were very fortunate when he got diagnosed at four, because he just he doesn't understand life without it. And he grew up watching his dad do shots and check his blood. So he became more like his father. And it just became even more of a way of life for all of us. Wow, Stacey Simms 11:33 that's a remarkable story. Is your husband's father still alive? Robyn Adams11:38 It has. Stacey Simms 11:40 I always ask about things like that. Because I think for some of us, who had no experience with type one before my child was diagnosed nine years ago, and I didn't know anything about type one, really. So I'm always impressed. I think that's the right word. But I always like to hear about older people. How old is he? Robyn Adams11:57 He is 7374 74. And he was diagnosed in his 40s. Wow. Which is, to me just wonderful that they caught it at that time as type one and did not try to label him as type two, Stacey Simms 12:15 right? We hear a lot about Miss diagnoses like that. Robyn Adams12:18 Exactly. That was that's always my biggest concern. When I do hear about adults going in and being diagnosed. And either their, you know, the parents of children that I know or spouses and I'm always so quick to say please, please make sure that they truly truly know that it's type one and not type two, just because when it goes overlooked for so long, they get so sick. Stacey Simms 12:42 So, um, do the three of the boys talk about this? I mean, it just must be so funny to have. I don't know if that's the right word. Let me start again, is it do the three of them kind of compare notes? Robyn Adams12:56 They do to a point, Wesley does still do the mph method. He's 70 or 74 years old, he's been doing this for a long time, you're not gonna change his method. You know, that's just the way it is. So they do compare stories, and Rob will try to give them helpful tips or try to say, you know, I really wish he would try to do it this way. And now He's good. He's got his way down. But you know, you just have to look at it from the perspective of the individual with the disease. You know, they're the ones who juggle and manage and live with the disease, if they're setting their routine and their way of doing things. It's really hard to get somebody to change, you know, because change could mean big things, good or bad. It can mean big. So we just try to step back and, you know, respect and understand that that's his perspective. But they do they talk about it a lot. And it's nice to have, you know, to two boys in the kitchen, treating loads together, things like that, you know, there's just kind of that understanding in the household that okay, this is what it is. We've got to stop, take care of it, and then we'll move on from there. Stacey Simms 14:07 Let's move on to talk about Disney. How did you get involved? Your certified Disney planner is something you always loved. Robyn Adams14:16 It is. I mean, I started going we started taking Robert when he was three. And it just kind of grew into a natural obsession to where we were going several times a year. And then a few years ago, we were in a position where the main business that I had, I was a home appraiser was starting to dwindle due to the economy. What gave you the idea to take your Stacey Simms 14:40 Disney planning and diabetes and put the two together? Robyn Adams14:44 Seeing the need for it. Seeing the questions on Facebook pop up over and over again. I'm going to Disney What do I do? Seeing the overwhelming feeling and feeling the fear come through people's post of how they just needed somebody to hold their hand for a few minutes to say you can do this. A lot of people once you've done Disney, you do understand you know, the loops, you know everything. But especially when you've been a first timer and you've never been, first of all Disney in itself is such an expedition, just dealing with all the ins and the outs, the resorts, the dining plan, the tickets, the four parks, the two water parks, then you've got Disney Land with the two parks over there, the rides, the attractions, the characters, taking all of that in, because you're investing a lot of money into this trip. So you want it to be just perfect, then when you throw diabetes into the mix, knowing that that could make your magical trip that you want to be so perfect, quite imperfect. It's a very daunting task for individuals. So I started to hear that in the post and started to see it and just realize that there was a need for it. So I just decided that Well, um, you know, this is what I do, I'll just start kind of tailoring all of my planning towards focusing towards families with diabetes. Stacey Simms 16:09 And you do an event, we'll talk about the event once a once a year, right for families with diabetes. But before we talk about the event, let's get some advice. I mean, we've been to Disney many times, I'm what I would call myself a crazy planner. So I I take care of stuff. I'm good to go. I wasn't all that concerned about diabetes. But that's me. So if for people who are concerned and really worry, you know, where do you start them because as you said, Disney, in and of itself is a huge, huge vacation to plan. Robyn Adams16:42 Really, I start mostly with explaining. For those who have never been to Disney, I explain what seems is basic knowledge to you and me who have been there 100 times explaining that they can take food into the parks, they can take a stroller into the parks, they can take their supplies into the parks. And you'd be amazed at just hearing those three things. Make them feel 100 times better. You know, just the simple fact that you can take in low blood sugar snaps you can take in your water, things like that just immediately helps parents feel a little bit better. Because that's their biggest fear is what if I get stuck in a line with a low blood sugar? What do I do? They need to know that they have access to their supplies at all times. Stacey Simms 17:26 And you do I mean we've had that situation happen. We've had highs we've had lows, we've had to sit down in line for Peter Pan when my son was four and treat a low and we always had our stuff with us. And I love with Disney. You don't have to stash things in lockers like you do if you go to Universal. Robyn Adams17:43 Universal you do Stacey Simms 17:44 right you do to put things in lockers, although I have to tell you I am always the fashionable one with the small fanny pack. I look so cool. But a fanny pack is they'll let you on the rides. Even universal so I love the fanny pack is in my opinion is the way to go. I don't care how silly you look. I rocket my kids are mortified. I am embarrassment level expert. But it's much easier. I don't have cargo pants. I don't have all those pockets. But I like the fanny pack. Alright, so you can bring your low supplies in. You can have a stroller for little kids, you can rent one or you can get one for free at Disney. What about i would i always warn people about the amount of walking because man even though we've been several times, I always forget how big it is. Robyn Adams18:24 Yes, you walk seven to 10 miles a day. Wow. Yep. And that's one reason why I push a stroller especially for anybody ages 10 and under. They they just don't realize the magnitude of what walking will do to the blood sugar. And even though I send children that are top athletes, you know as far as they are involved in a lot of competitive gymnastics, or baseball teams, football teams, all of that. She amusement parks are totally different...
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Going to "Regular" Sleepaway Camp with Type 1 Diabetes
04/13/2021
Going to "Regular" Sleepaway Camp with Type 1 Diabetes
Let's talk about summer camp! Specifically non-diabetes sleepaway camp. We have a great roundtable to tackle a subject that can seem pretty scary but Stacey thinks is one of the best things she's ever done for her son. Joining Stacey are Shelby Hughes who live with type 1 and has sent her daughter with T1D to diabetes camp and regular camp, and April Blackwell, an adult with type 1. April went to Space Camp as a kid - no surprise if you remember our previous episode with her. April works in Mission Control at NASA. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode Transcription (beta) Stacey Simms 0:00 Diabetes Connections is brought to you by Dario health. Manage your blood glucose levels increase your possibilities by Gvoke Hypopen the first premixed auto injector for very low blood sugar, and by Dexcom help make knowledge your superpower with the Dexcom G6 CGM system. Announcer 0:23 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:29 This week, let's talk about summer camp specifically non diabetes. sleepaway camp, we have a great round table to tackle a subject that can seem pretty scary, but it's honestly one of the best things I've ever done for my son. And my guests who went themselves agree. April Blackwell 0:46 It sort of put that independence on me to you know, take care and manage my diabetes on my own. And I think that was a big step for me personally, just because I wanted to be like everyone else and have sleep overs and go to camp and stuff. So it was a big motivator for me. Stacey Simms 1:02 That is April Blackwell, an adult who lives with type one talking about her summer camp experience. You'll also hear from Shelby Hughes. She lives with type one and sent her daughter with T1D to diabetes camp and regular camp. Plus, you'll hear from me, I've sent Benny to month long, regular sleepaway camp for many years. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show. I am so glad to have you along. I am always excited to have you here. But I this is one of my favorite topics. I love talking about camp. I think camp is so important for kids and for parents. If you're a longtime listener, you know that if you're new, Hi, I'm your host, Stacey Simms, and we aim to educate and inspire about diabetes with a focus on people who use insulin. So what's the big deal about camp, I really feel that going away from your parents, even if it's just for a couple of nights. And usually it's for at least a week, that's what we're going to focus on here is week long or longer camp programs, gives kids a gift, a gift of independence of confidence, a little bit of responsibility, diabetes or not. You learn who you are, when you're not with your home friends, your school friends and your family. You can try different things you can you know, invent different personalities, you can give yourself a nickname, I went to camp with a kid who had a completely different name at camp. And it's a huge tradition in my family, I went to the same summer camp for a little while as my dad, if that gives you any indication, my kids didn't go there. Because we we moved that was a northeast thing. And my kids are both gone to camp, of course in the southeast where we live. But I'm such a proponent of camp. And the flip side of that is, it's so great for the parents, because you have to know who you are when your kids aren't around. I know that seems weird, especially for diabetes moms and some dads. But we get so caught up in our kids, that when you are able to turn the Dexcom share off for a week or longer. It's liberating in a way that I think is incredibly valuable. Is it scary? Oh yeah, I worry every day, especially when he's not at diabetes camp. So we'll get to it. I do want to bring up a couple of quick points. Before we get started. I'm going to try to get a blog post out about this this week. Sometime. I'm a little behind on things. But I'm hoping to put that out because we cover a lot of issues in this Roundtable. But one thing we didn't really mention is the question of when is my kid ready to go to regular camp. This varies kid to kid various camp to camp. I think that if your child is able to check his or her own blood sugar, you know, with a meter not just looking at a CGM, because cgms can fail. And they do need to know how to check their blood sugar. If your child can administer insulin with his or her pump, if your child can change a pump, inset, and do all these things with supervision, I don't expect you know, eight 9, 10 year olds, 11 12, 13 year olds even depending on the kid to be able to do all these things perfectly. If they can do all that with some supervision, then I think you're at a good starting point. And the other question is of the camp itself. Are they willing to learn? Do you feel comfortable with the staff their medical or not, and their knowledge? You know, if you're sending a 14 year old to scout camp, you might feel comfortable that the scout leader knows how to administer glucagon and could call 911. If you're sending an eight year old, you may want to have a camp with more medical knowledge so they can recognize highs and lows and help with giving shots if needed. You know, that kind of thing. It all depends on many, many different factors. But these are important questions to ask yourself. We're going to go through with a round table I'm going to come back after with a couple of things that I think we missed that I want to make sure to mention. But first Diabetes Connections is brought to you by Gvoke Hypopen and you know that low blood sugar feels horrible. You can get shaky and sweaty or even feel like you're going to pass out. There are a lot of symptoms and they can be different for everyone. I'm so glad we have a different option to treat very low blood sugar Gvoke Hypopen is the first auto injector to treat very low blood sugar. Gvoke Hypopen is pre mixed and ready to go with no visible needle. Before Gvoke people needed to go through a lot of steps to get glucagon treatments ready to be used. This made emergency situations even more challenging and stressful. This is so much better. I'm grateful we have it on hand. Find out more go to Diabetes connections.com and click on the Gvoke logo. g evoke shouldn't be used in patients with pheochromocytoma or insulinoma visit Gvoke glucagon dot com slash risk. My guests this week love camp just as much as I do. Shelby Hughes lives with type one herself. Her daughter Caroline was diagnosed at age seven. She is now 11. She's the youngest of Shelby's three children. And Caroline went to diabetes camp and a regular camp and you will hear all about that. April Blackwell joins me as well. She lives with type 1 diabetes. She was diagnosed as a kid and she went to space camp and was then a counselor at Space Camp. Now you probably recognize April's name. We've talked to her before. And, gosh, I'm always all starstruck talking to her. She works at NASA. She has her dream job she says of flying the International Space Station for mission control. So she was kind enough, right that she was kind enough to come on and talk to me about camp this week, which was just absolutely amazing. So April, thank you so much for that. But I think her perspective is really valuable. And I hope you enjoy this whole conversation. So I am really pleased to welcome Shelby Hughes and April plaque. Well, we are going to talk about camp. Ladies, thank you so much for being here. Shelby Huges 6:51 Thank you for having us. Stacey Simms 6:53 I think we are all in agreement here that camp is cool camp is, great campus really good for kids. And for parents. So she'll be telling me about your, you know, when you decided to send your child to camp, how old she was, what kind of Camp it was, how long. Shelby Hughes 7:08 So the first year that Caroline went to camp was before she was diagnosed diabetes. And I know it seems early, but the camp where my older two children had gone was you know, not a lengthy stay camp is about five nights, six days, and it was a church camp. But it was within, you know, reasonable driving distance from our house. And they offered a starter camp, the year that Caroline finished first grade. And it was a maybe a four night five day situation. So we sent her to that. And she had such a great experience. And so that just was on our radar like she was I just feel like camp is super important for all kids. So you know, we wanted to get her started as early as possible. Stacey Simms 8:02 When she was then diagnosed with type one, did you hesitate sending her back. Shelby Hughes 8:06 Now, um, I think she she was diagnosed in the middle of her second grade year. And the only hesitation was I was worried that the camp wouldn't accommodate her and would say no, she can't come we can't deal with that. So that was our only issue. And when we got in touch with the camp director, and she said no problem. You know, we'll we'll work it out. We were We were all ready to go. Stacey Simms 8:33 Wow, that's great. All right, and we'll get into the details of what we had to we all have to do for those accommodations. And for us as parents to be able to just be able to sleep through the night ourselves when our kids are at camp. April. Tell me a little bit about your camp experience. How old were you when you went to camp? And did you have type one at the time already? April Blackwell 8:54 Yeah, so I I have always with my nerdy persona, but I did go one summer I did a back to back space camp in California when that was still open. And the next week I went to diabetes, to very like different, you know, scenarios for a person with diabetes. And this was only about a year or so after my diagnosis. So I was still doing injections. I didn't have any basically no technology at all back in the dark ages. So I think in some ways that helps maybe because my parents weren't used to getting, you know, share data all day long. And so it sort of put that independence on me to you know, take care and manage my diabetes on my own. And I think that was a big step for me personally, just because I wanted to be like everyone else and have sleep overs and go to camp and stuff. So it was a big motivator for me to take my diabetes. He's on myself. Stacey Simms 10:01 And I'm sorry, did you say how old you were when you went to that camp? April Blackwell 10:04 I think I was like around 12 or 13. Stacey Simms 10:07 Okay. Did you go back to diabetes camp? Did you go back to regular camp? April Blackwell 10:13 I, I never went back to those two camps. Actually, I did some other like church camps and stuff. But my summers just seem to get really busy. So it was hard to fit in those other camps. Stacey Simms 10:25 Yeah, that's the tough age. When she gets to be about 14. I think there's so much going on. Right? It's hard. And our camp experience, which I've shared before is that my daughter, like you, Shelby, my daughter went to this camp, my older child is three years older than Benny, and had a great time and would come home every summer and say, I can't wait for you to go. And I'd be like, there's no way he's going. And we were very fortunate, in my opinion, because it helped me, I don't know about Benny, but he was going to diabetes camp. And he was able to go when he was seven. So he went for a week to diabetes camp. And then the next summer, he went to diabetes camp for a week, and then his regular camp for two weeks. And I say we were lucky because it got me used to the idea of him being away understanding what needed to be done, even. And we'll get into this later, even adjusting basil rates for activity and things like that. But he went for two weeks when he was eight. We did not have share yet because it wasn't even around. And he just had his deck. No Did you have a Dexcom that first year he did not have a Dexcom that first year it was fingerstick only. And then the next year he had share he had Dexcom no share. And that next year at age nine, he went for a month and he has gone for a month every year since except for COVID. And this year, the camp is going to Israel for a month. That's the age group where they go to Israel. So we are dealing with a totally different in my opinion environment. To him, it's the same thing. But that's a different episode. So that's our summer camp experience. And it has been it has not been perfect Far from it. But it has been I think one of the seminal experiences of his childhood, and is certainly influenced him in a great way and given him a lot of confidence and independence. given me a lot of sleepless nights. Alright, Shelby, let me start with you, when your daughter was was going back to camp she was they were familiar with her, they knew what were some things that you talked to them about, to kind of get things, you know, set her up for success. Was there anything that you did at the time or learned since that made it a little easier for her and for the staff. Shelby Hughes 12:28 So um, one of the things, they did have a full time nurse, which was great. And the nurse was very willing to be trained on all things pump related and CGM related. And she at the time had the Medtronic 670 g, which automatically adjusts her basil rate, as long as she's an auto mode. So I figured that would make things a little easier than people wouldn't have to be fooling with our pump, adjusting rates and whatnot. And also, I got, the director got me in touch with the cafeteria staff with the head of the dining hall. And she was fantastic. She sent me a list of everything that they were going to be serving every meal for the entire time. So that gave me the opportunity to, you know, give them some carb counts. So they were very willing to work with me in terms of, you know, figuring out what she was going to eat and and what the carb counts were. Stacey Simms 13:34 April, I know, it was kind of a different time, as you said, you went you say no technology, but you had shots and you had your meter, which is tech. Did anybody help you? I mean, at 12, you probably were okay. But I would always assume that there might be a little supervision or kind of over the shoulder. Are you doing all right? Do you remember how it was handled? What you did? Right back to April answering that question. But first Diabetes Connections is brought to you by Dario. And over the years, I find we manage diabetes better when we're thinking less about all the stuff of diabetes tasks. And that's why I love partnering with people who take the load off on things like ordering supplies, so I can really focus on Benny, the Daario diabetes success plan is all about you. All the strips and lancets you need delivered to your door, one on one coaching so you can meet your milestones, weekly insights into your trends with suggestions for you on how to succeed, get the diabetes management plan that works with you and for you. Dario is published Studies demonstrate high impact clinical results, find out more go to my dario.com forward slash Diabetes Connections. Now back to April answering my question of what her camp did to kind of help keep her on track. April Blackwell 14:49 Yes, so this is actually something I think is really great about space camp. To the point that it inspired me to become a counselor while I was in college, but they're just You know, a very, they have everything planned out and under control as you would maybe expect space camp to have. So we had if you're familiar with Star Trek, we had a sick bay. That was it was just part of the camp experience. And even though Space Camp isn't necessarily geared towards kids with health conditions, it became just a seamless part of the whole camp experience. So, you know, every before every meal, the whole group would just swing by sickbay. And anyone who needed to take meds or like me check my blood sugar, take a shot, we just go into like they Well, everyone else was playing kickball or something, you know, for a few minutes. And it, it was awesome, because it didn't make you feel singled out at all. And it was just part of the whole camp experience. So I think that's a really great feeling as a kid. And it allows you to have that moment with the nurse or doctor to have sort of a one on one conversation about any sort of dosing Delta's that you should incorporate for upcoming activities. Stacey Simms 16:11 She'll be did your kiddo have a similar experience like that? Did they do anything? Shelby Hughes 16:16 That was kind of the same thing. There were other kids that took meds before meals, and they would kind of divert to the nurse's clinic. And she would, I think, I don't think she would take her insulin before meals that I think that the nurse would check her blood sugar, make sure her you know, everything was good with their pump. And then after, after dinner, I think she would, she would head by there and the nurse would would help her figure out how much to put in her pump. Stacey Simms 16:48 It was really reassuring to me, I remember starting to kind of plan this in January of the year he when when he went in, you know, July or August or whenever it was, and calling the medical people and saying how are we going to do this, you know, at eight years old, I need eyes on him to make sure that he's changing his pump site to make sure that his insulin cartridge is full, you know, trust but verify you're very independent, good kid, but still eight years old, you know, you're not gonna let him walk around camp by himself all the time doing everything. So she laughed and said, Oh, that whole cabin goes gets medication. That age, you know, and you forget that there are other kids with issues go into camp. And what we we didn't have to work it out at all. Because that cabin and not everybody, but you know, a bunch of the kids in that cabin would get in a golf cart. This is a very large camp, get on a golf cart, and go up to the infirmary, which I'm going to suggest which should be Star Trek themed as sick. But they would go to the infirmary every night. And so when he was eight, that very first year, what we decided was, he'd go up with them every night, and they would physically look at the pump, and make sure that it was an animist pump. So had a battery, no charge, but they would check the battery, they would check that it had insulin, at least for the night, that his pump site, you know, they kind of kept track was changed every three days or whatever. And it just made me feel better that they had eyes on him. And it made them feel better, as well, something we added in the next couple of years, as I realized that, frankly, they weren't on top of the site changes as much as I thought they would be because they trusted Benny, who's a very wonderful kid, but isn't going to change his instead of three days, unless somebody is reminding him, let's face it. So what we did was at meals at most camps, they have meds in the dining hall, because a lot of kids have to take medications with food, at least at our camp to have a table. So I said, Why don't you just bring the inset every three days and pretend it's like an antibiotic or an ADHD medication, like write it down. And then every three days here, let's watch you change it. And he loved it because he truly had did not have to think about it at...
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"Just go!" - Jeremy Larsen Travels the World with Type 1 Diabetes (Classic Episode)
04/08/2021
"Just go!" - Jeremy Larsen Travels the World with Type 1 Diabetes (Classic Episode)
We can't wait to travel again! Looking back on this episode really makes you want to hit the road. Jeremy Larsen is an American currently living in Japan but he's traveled the world. Jeremy started the 70-130 project (the “perfect” blood sugar range) to show that type 1 diabetes shouldn’t hold anyone back from travel. In 2017 he came back to the states to do a national parks trip and now he . This interview with Jeremy took place in October 2015. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode Transcription Stacey Simms 0:00 This episode of Diabetes Connections is brought to you by inside the breakthrough, a new history of science podcast full of did you know? stuff. Announcer 0:13 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:19 Welcome to a classic episode of Diabetes Connections. I'll be so glad to have you along, we aim to educate and inspire about diabetes with a focus on people who use insulin. These classic episodes are a chance to revisit episodes that aired in the first and second year of the podcast, when frankly, we didn't have quite as many listeners. And it's always fun to go back and check in with these folks. I spoke to Jeremy Larsen, back in 2015, he has traveled the world and he is currently living in Japan as he was when I first spoke to him. He started a project that he called 7130, the perfect quote unquote, blood sugar range to show that type 1 diabetes shouldn't hold anybody back from travel. Jeremy was diagnosed with type one when he was nine years old. And he says he got the travel bug from his parents and he's from America. He's an American citizen living abroad. And he says he spent a lot of his childhood seeing the US from the back of the family car. He has been all over the world. And you can see from his many, many videos, where he usually shows his blood sugar talks about his management, he's far from a perfect guy. That's not the point. He says, as you'll hear, it's more just about getting out there and living well. With type one little bit more on Jeremy is doing these days. I'll catch up in just a moment. But first, this episode of Diabetes Connections is brought to you by insight the breakthrough, a new history of science podcast created by Simon Simon is a group of Canadian researchers dedicated to changing the way we detect treat and even reverse type two diabetes. The latest episode features the question does snake oil actually contain snakes, it's a look into how this phrase snake oil came to be. And it was kind of surprising. It's a little gross. But it's also very interesting. I got a sneak peek of this show at the beginning of the year. I love it. I've subscribed to it. I listened to every episode. They're all terrific circuitry inside the breakthrough wherever you found this podcast. And if you're listening through the website or on social media, there is a link to inside the breakthrough at Diabetes connections.com. And this podcast, as you know is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. When I reached out to Jeremy Larsen back in 2015, he was because I was just really intrigued by his Twitter feed. He was traveling all over the place. And he was always showing his blood sugar. And he had interesting stories about everything that you would we would expect, right finding insulin language barriers. We talked about that a little bit, you know, talking about what sang type 1 diabetes in different languages. He was just as fascinating to talk to him as I had hoped. And we actually connected again a couple of years later, he did a huge road trip across the USA in 2017. Going to different national parks. I think he talks about that in this interview that he was planning that and when I caught up to him recently, he said hey, I'm actually still in Osaka, Japan still teaching although we're watching the Coronavirus numbers with concerning the canceled big Amtrak travel plans last year he has been biking to and from work every single day. And he has a big YouTube channel. So I will link to that now as well. So you can check out what he's been up to. One more quick thing I need to let you know, my intro to this interview. Initially, the beginning of my talking had a lot of music under it. I did things a little differently back in 2015. So it'll be really weird. If I play that now. It'll sound odd. So I will just set it up to tell you that at this point. Jeremy is talking to me from Japan. I am in North Carolina. And I'm starting out by mentioning the time zones here. I thank him for joining me today. Or maybe it's tonight. Jeremy Larsen 3:57 Tonight, my time early morning, your time. Stacey Simms 4:00 Let's start. When you were diagnosed, you were a kid you were living in the United States. You grew up in the southeast. How old were you when you were diagnosed? Jeremy Larsen 4:10 I was nine. And I was living in Augusta, Georgia. I don't remember a lot about it, except that my parents say I was laying around on the couch a lot and had no energy and all that kind of stuff. drinking a lot of water going to the bathroom a lot. I think it was the lack of energy that really, really concerned them. And as I recall it, and I was only nine I'm not sure how accurate This is. But I recalled that they took me to the hospital on December 24. I know it was December 19 just a few days before Christmas. And I don't remember exactly what happened. But remember somebody probably my dad saying that you might have diabetes. And I had heard that word. I knew it was something but I didn't really know what it was right. So I was in the hospital for several days, you know, and of course it was diabetes. And I remember them saying The doctors were real good, never saying they weren't sure I was going to get out for Christmas morning. But they were trying to do that. And I didn't really care. I just wanted to get better. And finally, they let me get out on December 24. So I actually went home and had some kind of Christmas morning the next morning. So that's kind of all I remember, I remember a few things from the hospital, but it was just basically pretty, probably the pretty standard story from back then. Stacey Simms 5:28 Yeah, when you're nine years old, you kind of just want to get back to your, your friends. And if you play sports, and just doing what you want to do. Jeremy Larsen 5:36 I remember some of my friends at school had given like, Christmas presents to each other, and somebody had given me a box and I had like a giant candy cane in it. And I was kind of looking forward to getting back to that. And my parents had thrown it out about that. Stacey Simms 5:51 Do you remember kind of life changing quite a bit? Or did your parents treat this as Okay, we're just going to go on, as we did before with diabetes? Jeremy Larsen 5:59 No, that's exactly how it was. They just, they were really great. They were obviously very concerned and everything, but um, they kind of presented a just Well, that's how it is kind of face to me. And that's just how it was. I don't really remember a difference. I don't remember what life was like before it. You know, Stacey Simms 6:18 we're going to talk a lot about travel today. Did you have that bug as a kid? Did you travel with your parents a lot? Jeremy Larsen 6:24 Yeah, that's where it started. I don't I wouldn't say I had the bug. But we lived. I grew up in Nashville. Actually, I just moved to Augusta when all this happened. But when I lived in Nashville, Tennessee, and when I got when I lived in Augusta, we would take these long car trips once or twice a year down to Sarasota, Florida. And you know, especially from Nashville, that's whatever it is 12 or 14 hours, we do it one straight shot. So it was me and my sister and my parents, and we would just spend me and my sister in the backseat playing games and looking at license plates and all that kind of fun stuff. And we just got used to sitting for long periods of time and watching the world go by and we drove all around. We drove around the Mississippi once and just long, long car trips. I think that's where it started. Stacey Simms 7:10 It's funny, you mentioned the license plate game and things like that, because I travel a lot with my kids who drive with the car, but they've got their movies in their iPads and they don't. I hope they look out the window sometimes. Jeremy Larsen 7:19 I don't think they do. I still play the license plate game when I'm driving around America. Jeremy Larsen 7:25 But you don't know, Jeremy Larsen 7:26 Wyoming. Stacey Simms 7:28 But you don't live in America anymore. How did you get to Japan? Jeremy Larsen 7:32 Well, I had only I was still living in America. And I'd only left. The United States once now was for a month in Scandinavia. And that was a lot of fun just backpacking around, you know, Stacey Simms 7:42 did you go by yourself? Jeremy Larsen 7:43 Were you with friends? Yeah, by myself. Yeah. And that was just just kind of learning how to travel, how to be outside the US and how to find trains and how to find accommodation and stuff. And it was a lot of fun. But then I was back in the US. And I was working in Augusta, actually in Aiken, South Carolina. And I started I don't know what the thing what made me do this. But I started realizing I can I could not even not only travel overseas, I could live overseas somewhere. And I thought, well, how would I do that? So I started looking at websites and stuff. And I found that you could teach English. And you didn't really need any special qualifications depending on the country. There's a lot of different countries you could do it in. So I decided to go to Chile, because I was pretty good at Spanish in high school in college. And I still remembered most of it. So that I go to Chile, I'll be a teacher. And it turns out you had to have a teaching certificate or some kind of degree or something for GLA Chilean government's rules. So looked around. And then I kind of settled on either Japan or Korea because they had a good reputation for having a lot of jobs. And you didn't need special qualifications. And the salaries were pretty good even for introductions, introductory teachers. And then Korea kind of had a bad reputation. I don't want to smear Korea because I don't actually know they had a bad reputation for some of the schools didn't pay on time or wouldn't pay in Japan had no such reputation. Everybody thought Japan was pretty good. So. So I actually, I applied through a website to one of the big companies here in Japan and they flew I flew up to Toronto to have a an interview. And they hired me and a few months later, I came to Osaka for one year. My plan was one year, maybe two and that ended up being four years. And then I left Japan after four years went traveling a little bit and then I came back to Japan. I've been here another four years. That's where I am now. Stacey Simms 9:40 What do you like about it? I mean, did you enjoy teaching or do you just like being in Japan? Jeremy Larsen 9:44 My mother always told me that I should be a teacher and I always thought she was crazy because I never did anything like that. Like I was in I worked in newspapers I worked in like graphics and stuff like that. And just because that's what you do if you want to move here I started teaching English and it turns out I do I get it's, it's not really why I'm staying here. But it is fun. It's very, it's like, you know, most people have desk jobs where they just sit around and they're on a computer all day. But my job was just talking to people. And it's really a lot of fun for that. So the reason I stayed was kind of, it's just, to me, it's like traveling every day a little bit. Because as I don't read Japanese that well, I don't I'm not actually that good in Japanese, despite my time here. So whenever time every time I like walk down the street here, everything's kind of weird and new to me, still, it's still that way. And that's what I like about like a little sense of, I don't quite know what's going on. So I have to fight to you know, make my own way here. And I'm kind of used to it but still, it's it's an odd place to be. It's the people like me who thrive here are generally people who are probably more loners, or they probably, they just enjoy, they enjoy the challenge of trying to figure things out. Stacey Simms 11:00 It must be just so fascinating, as you say, to feel like you're traveling every day. But we haven't really mentioned type 1 diabetes. Tell me a little bit about how you do it. Especially let's let's back way up. Tell me about your first trip that month of backpacking. It seems like this is second nature to you now, how did you prepare? And what do you do when you travel? Jeremy Larsen 11:22 Um, it's kind of funny when I look back on my life, like because I was diagnosed at nine when I think of, you know, the rest of elementary school and junior high school high school, I don't really remember diabetes, like in high school, I don't remember if I took shots to school and took them or if I just took regular in the morning, I don't know what it was. Because I just had like a regular life. And I always, almost always tried to maintain diabetes, but I didn't really it wasn't like a huge, huge, huge thing. It was just something to deal with. You know, when I was in Scandinavia, all I really remember is that I had my glucose machine. And I was on human log and probably NPH. Yeah, human organ NPH at that time, and it was insulin pen with replaceable cartridges. That's what I was using. And I just, it was only a month. So I knew exactly how much I knew about how much I would need. And I made sure the doctor gave me probably two or three times that amount just to be careful, you know, right. And I kept it in a cooler pack, and just carried it around with me. I remember I carried a an empty Coke, coke bottle like an empty plastic bottle. And I would put my used strips and needles in it. Just carry them around month. And it got like all this bloody water and stuff. I remember crossing over from Sweden and Norway by train and some lady came by to check passports and stuff. And she saw that she just looked at it and didn't seem to care. Put it back in my bag. Sorry. But that's got to be the most suspicious thing she's seen all day. Exactly. As long as you have enough supplies, and all I have is insulin and blood sugar machine and strips. Just make sure I have enough I keep them in a couple different places like two different bags in case something happens to one. So it's not ever been in problem. Really. Stacey Simms 13:09 You know, it's interesting to hear you speak about it. Because you're very low key about this. Obviously, you're taking care of yourself. You're doing what you need to do. But this I like that you don't remember what you did in high school to me that shows Hey, it's just life. We're getting through it. I mean, I don't remember all the stuff I did in high school. I don't have diabetes, it's just the way it seems to go for you. Is that attitude? You think something that is important as you live now in Japan? Jeremy Larsen 13:31 Yeah, I think so. Again, it never really comes up here. Actually, the real I don't exactly know why. But I think one of the reasons and I don't know how cool of a story this is, but it is true. When I was in the hospital, and when I first got diagnosed, I remember you know, it's kind of a heavy atmosphere, like you've got diabetes a little bit. And I remember the doctors saying a couple times, well, you have diabetes, and that's not good. But the kid in the next room, he's got leukemia. Oh, geez. And another word I had heard that I didn't know what it was. And they explained that's much, much, much worse, you know? And I kind of think maybe because I eventually learned what leukemia was. And I kind of think maybe that's what gave me my outlook on diabetes. Like it could be much, much worse. Stacey Simms 14:18 I think it's fascinating. You know, I'd love to talk to more people about their first impressions because I think it's very important. I don't doubt that that did affect you. When we were in the hospital with my son. There was a nurse who came by she wasn't our nurse. My son was not yet two years old when he was diagnosed, and we didn't know we were doing well. But what is this what's gonna happen? And she came in and she has type one, she was pregnant with her second child. And she said, I just wanted to come in and tell you everything's gonna be great. life's gonna be good. They told me I couldn't have kids. Here I am with my second. Don't baby Your son, get out of the hospital have a great life. You know, see you later. And it affected us to the point where we thought Oh, great. Look at that. I think if we had let ourselves kind of wallow in the world. mean nothing's going to be good ever again, it would have changed. But this great nurse came by and said, Dad, come on, it's gonna be okay. It really Jeremy Larsen 15:06 a lot of people do follow it and they don't have anybody like that. And I think that sets them on a bad course this isn't a bad attitude. You know, Stacey Simms 15:13 I think we were extremely lucky. So, Jeremy, now that you have traveled and you have traveled extensively, you started at really interesting project that I want to talk about. And that is how I saw you on on Twitter, this is your your Twitter handle and tell me about 7130. What is this all about? Jeremy Larsen 15:36 7130 rows, really, because those are the numbers that the American Diabetes Association recommends for pre meal blood sugars, Jeremy Larsen 15:47 right, that's the Jeremy Larsen 15:48 best range, the best range for generally speaking, I think 70 is a little bit low for me personally, but that's what they say. So it's got a good ring to it. 7130. What happened is I knew another diabetic type one diabetic, and he didn't take care of his, I guess he took insulin a little bit, but he didn't. Like he got sick one night, like he felt really bad. And he called his father who is a physician. And he said, I feel really bad. And his father said, Well, can you check your blood sugar? And he said, No, I don't have any I don't own a machine. And I heard this story. And I mean, whatever that story is worked out. Alright. But I thought, and he's had a couple surgeries for like, diabetic retinopathy and stuff like that. Wow. I thought why do people do that? Why do people just not accept it like it life is so much better, if you take a few seconds, every, every few hours, whatever it is, check your blood sugar and try to get it right, you know, it's gonna be real high and low sometimes, but just try to try to learn more, you know, the the psychological barrier that some people have not being able to face, it is very unhelpful, and what 7130 is really to me, for one thing, it's way for me to brag about the traveling, I do, and I like that. And I like blogging and stuff, but um, it's a way to show people that you can go anywhere, diabetes doesn't have to hold you back. And if you watch your blood sugar, and really like, you know, accept diabetes, except that you have diabetes, and that's just how it is. And it's not that big a deal. It's not that hard. It doesn't always make sense. But...
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Ask the D-Moms: A Dad's Worry, First Jobs, Teen Travel
04/06/2021
Ask the D-Moms: A Dad's Worry, First Jobs, Teen Travel
Moira McCarthy and Stacey are back to answer your D-parenting questions! This time around, they're talking about a dad who’s a first responder and sees the emergency side of diabetes, advice for young adults with T1D getting their first jobs and questions about teens with diabetes traveling abroad. In our Innovations segment – a new glucagon and previous guest Bob Weisher launches his Invincible Kids app for teens. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode Transcription Stacey Simms 0:00 Diabetes Connections is brought to you by Dario health. Manage your blood glucose levels increase your possibilities. By Gvoke Hypopen the first premixed auto injector for very low blood sugar, and by Dexcom, keeping you in control with an integrated system for diabetes management. Announcer 0:22 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:28 This week, ask the D moms is back! Moira McCarthy joins me to answer your questions, including one about sending a teenwith type one on an international trip for a month Moira McCarthy 0:41 You can’t go from constantly overseeing it for years and years and years to bang letting them go on something like this. And that's why you've got to kind of poke at it. And it's not as much for them as it is for us for parents because we have to get past our own eggs. And that's how you do it. Stacey Simms 1:00 We also talk about a dad who's a first responder and sees the emergency side of diabetes advice for young adults getting their first jobs, and Moira shares a story that stopped her in her tracks, even after 24 years of her daughter's diabetes. In our innovation segment, a new glucagon option and former guest invincible kids takes a big step forward. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show, we aim to educate and inspire about diabetes with a focus on people who use insulin. My son was diagnosed with type one more than 14 years ago as a toddler. My husband lives with type two. I don't have diabetes, I have a background in broadcasting. And that is how you get this podcast. If you are a careful, longtime listener, you have probably guessed that the teenager I was talking about in that tease there. The intro I do for every show is Benny. Yeah, my son is set to go to Israel for a month this summer. It's part of a camp program. I've been sending him to this camp since he was eight years old at age nine. He started going for a month. It's not a diabetes camp. But I took advantage of having more on the show to ask her for some advice. Because even though I let him go, you know, I am nervous about this whole thing. COVID aside, you know, this is a very, very big deal for me. He's super excited, and we'll talk about that in just a minute. With Moira A big thank you to JDRF Desert West. That's the chapter that now includes Nevada, Arizona and New Mexico I believe they had me out for a they had me on zoom. It's so easy to say they had me come by. I hope we get back to that soon. But I did this via zoom, we had a great time. They have an ongoing event called type one talk. And they're bringing in authors, they have an author come in talk about the book read a little bit answer questions. It was a great fun time. I have to admit it was a little difficult to stay up because I know I’m such a baby. But it was on pacific time and I’m on the east coast. And I mean, I'm awake. We did it at I believe it started at 830 my time, and we went on with 10 o'clock. But I mean I'm not in bed, but I'm definitely in pajamas. Usually by which made it even more fun because I think maybe I was a bit looser. You know, just it was more casual in a way then during office hours. But I really enjoyed that. And I got to say, you know, the world's worst diabetes mom had an amazing February and March. You know, the book came out in at the end of 2019. But thank you so much. If you are spreading the word or you've told friends about it, something happened this year, and it has sold more than definitely than I expected this year, but it's outselling some months right around lunch. So I'm very excited and I am working on the idea for Book Two. I'll keep you posted on that. But I'm always happy to talk to JDRF chapters, other groups, a mom group, you know, just to sit and chat. Just let me know. Moira and D mom advice coming up in just a moment. But first Diabetes Connections is brought to you by Dario health. One of the things that makes diabetes management difficult for us that really annoys me and Benny, isn’t actually the big picture stuff. It's all the little tasks adding up. I mean, are you sick of running out of strips? Do you need some direction or encouragement going forward with your diabetes management with visibility into your trends help you on your wellness journey? The Dario diabetes success plan offers all of that and more. No more waiting in line at the pharmacy. No more searching online for answers no more wondering about how you're doing with your blood sugar levels. Find out more go to my dario.com forward slash diabetes dash connections. My guest this week is my good friend and fellow D mom Moira McCarthy. She is an author, a writer and advocate and so much more. Her daughter Lauren was diagnosed at age six in 1997. And I started the Ask the D mom segment A couple of years ago here on the show. We love getting questions from you Moira and I, as you probably know, are very much aligned to philosophically when it comes to diabetes, which kind of makes sense because I learned an awful lot from her. She's one of my mentors, and I'm so thankful that I had her blog. Despite diabetes and her books to guide me early on in Benny's journey. I mean, even before I met more, I've told this story many times before I was a big fan. And when I finally got to meet her in 2015, we spoke on the same bill at JDRF. St. Louis, I was so excited, I was kind of intimidated to be speaking on the same bill as she was. And that's really how our friendship our in person real friendship started. I bring that up. Because while we're aligned, as I say, we also had our kids diagnosed at very different times in diabetes, tech availability, or even what insulins were available at the time. So you know, 1997, when Lauren was diagnosed, was really different from almost a decade later, 2006 when Betty was diagnosed, I mean, can you think that a kid diagnosed today when they leave the hospital quite often with an insulin pump and a Dexcom? Very different times. So I like that more. And I kind of overlap in that way and have a bit of a different perspective, just in our experiences, but some really good questions this time around. And as I said, I threw one in as well. Moira, welcome back. It's always great to talk to you. I feel like we do this seasonally. Did we talk last year during allergy season? Moira McCarthy 6:19 It's funny, because when's the last time that we did a chat like this to share with everyone? It's been? It's been a hot minute, or Oh, it's Stacey Simms 6:27 been since last fall? Probably before maybe right around Halloween? Yeah, I Moira McCarthy 6:31 can't decide if time is passing really slowly or in the blink of an eye. I just don't even know anymore. But I feel like Stacey Simms 6:39 yeah, this this year is flying by and it's spring, is it really spring by you? It's usually. Moira McCarthy 6:44 It's horrible. But it's spring on the calendar. But that's okay. Stacey Simms 6:49 Well, we had a bunch of really interesting questions this time around. And I thought of you I was in a JDRF discussion. This is a really neat event I did with the the chapter in Las Vegas and surrounding states. So it was a couple of days after I've been there a few times. So I hope to go in person one of these days. But it was like a book club discussion, which was really fun. So I read part of my book. And then we had a whole group discussion. And I got a really interesting question from one of the moms who was there, and I wanted to run it by you. This mom says she's pretty laid back, their son has type one, I want to say he is seven, but he might be a little bit older might be a tween, but the mom says she's pretty laid back really wants her kid to thrive with type one. But the father, her husband is a firefighter. He's a first responder, and he sees in his words, the worst of T1D. So he is very nervous that their son will have, you know, an unhealthy a bad outcome and all these words that he was using, and wants much more strict control, and really wants to get this message across to their son that you know, you've got to take care of yourself, where's the mom just really want to expose their son to the kinds of things that this firefighter is seeing? If all of that makes sense. What do you think about that? Moira McCarthy 8:10 Well, so first of all, what they expose them to would very much depend on his age, and seven and a tween are very different. Right? So we'll just speak more generally, around it. Do our children need to understand the basics of type 1 diabetes, and why they do what they do? Absolutely. Why would you even a toddler, you, you must have done it with Benny that when you're giving them the shot, you say, you know, we're giving you this medicine so that now you can eat your food and it won't make you sick and things like that. And then as they get older, so you want them to understand it. But do you want to educate them in a fear factor kind of way? And to that? I would say no. Now, why is that? Well, that's because a number of reasons. First of all, children have very creative imaginations, and you can plant some really scary ideas in their head at a young age that may take forever for them to get out of their heads. Second, this gentleman, and thank you for his service, right sees the worst because that's his job to see the worst. If his job was to go visit everyone with diabetes every day, he probably wouldn't feel the way he felt. Does that make sense? Yeah. And so he's seeing these very rare, very frightening situations. So what I would say is, if there's any way that the mom and the dad can attend something together, whether it's virtual, or in person where they talk about the holistic approach to raising a child with diabetes, and we can you and I can talk about that a little bit right now for this mom and this dad. But as I've said to you many times, and as we all say to one another, we're not just raising controlled Diabetes, we're raising a full human being. And it's very important that a child grow up, secure, happy feeling cared for, not afraid of what may be around the corner, while at the same time having a basic understanding of why they might need to do what they would do. So if this child is seven, I would say there's absolutely no reason under any circumstance to talk about what that Father has seen, ever add to a seven year old. If this child is a tween 1112, I don't think it's the worst idea to maybe tell a story every once in a while. But I would also be careful of that. Because, again, you don't know if that person you're treating actually takes really good care of their diabetes, and is just in a bad situation you don't know, as an EMT, or a paramedic, paramedic, if there's an underlying illness that they may not know about, and they'll find out at the hospital or something. So, so even though you're there, you don't know the whole history. And I would just be careful around that. One of the things I will say is, I really do know, 1000s of families with someone who has type 1 diabetes in their family, and maybe five have had to call a paramedic, who I know, it's not out of the realm of possibility, but it's also not a probability. It's not it's way closer to never happening than it is to happening. And so based on that, I question whether you should build fear in a child to hope that they will take care of their diabetes. The other thing too is I know from raising my daughter, fear does not work in children. It's the same with everything, not just diabetes, they don't see down the road, they don't see danger, that part of them hasn't developed yet. I would say focus more on how he feels when he plays soccer, or he plays the tuba or whatever it is he does or he plays chess, or he reads, how does he feel them? That's what I would focus on. It's got to be so hard for that dad, though, with what he's seen. Stacey Simms 12:08 Oh, yeah, yeah. Well, the way I answered it was, there's two parts to my answer. And the second part, I credited to you, I promise, because it's pure Moira. But the first thing I said was, we have to kind of understand that there are these issues of access, education, family support. And when, you know, from my experience with this podcast, my audience, the people who as you're listening, now, you are a very different and wonderful and kind of lucky bunch of people, because you are seeking out diabetes education, you now know where to get community support, if you don't have family support. And I do surveys of my audience all the time where these people have plenty of support, you know, they have a, they have community, they have friends, they have family, they have somebody to help them out. And I say all that because my guess and it's a guess. And this is not a value, state judgment, anything on people who call paramedics, we all need them when we need them. But my guess would be that the repeat people that this firefighter is seeing if that's indeed the case, are probably people who do not have the support and the setup that his son have. So it's not a fair comparison, in my opinion, of what his son may experience. And again, we have no idea what he's really seeing, right is a type two is a type one, does it really matter? Right Is this a Is this a father who may also see his son weaving without diabetes in every child that he takes care of? Moira McCarthy 13:38 I was thinking that like I see a car accident, it must just be horrible. I mean, that have diabetes diagnosis is very traumatic to the parent. And it took me a long time to be comfortable is a weird word, but to be comfortable with it, you know, and if it's right in your face, like that, the poor man, but I would also say that you can go out and find the worst case scenario anytime with anything, and then dwell on that. Again, if it's put in your face every day, like this poor gentleman and his job, it's harder to look past, but he's gonna have to find a way to differentiate his child's diabetes from what he does on the road every day. And I just hope that he can, because I can't imagine how difficult it is to see that and then think about your own child. Stacey Simms 14:29 And the second part of what I told this mom to try, as, and this is one of the things you've pulled out of your bag is write down what he is concerned about. And she should do the same. Anything she's concerned about about her husband overreacting and what it might do to their son, and he should write down. I'm not overreacting, this is what I see. And then bring it to the endocrinologist or use the patient portal just to talk to the endocrinologist without your child around especially a seven year old and see what the endo has to say. How many kids in your practice have called an ambulance three times in the last month? Or, you know, whatever he's really worried about? Or if this happens, does it mean that because we've talked about this, most of us kind of make up stuff? Because we don't know. And we haven't, we're afraid to ask. Moira McCarthy 15:15 That's great advice. Stacey Simms 15:17 Well, sure you gave it to me. Moira McCarthy 15:20 But really, that is what I always did is just sort of went to the endo and said, This is what I'm worried about now. And then they would tell me why I didn't need to be worried. You have to trust your medical team to do that. And this, dad's probably going to have to think a little more than most of us have to because of what he's seen, you know, and then I know adults with type one who, when they're super low, prefer to call EMTs and have them come to their house and treat them and then leave without going to the hospital. I don't get it. But I know people who say they'd much rather do that than use glucagon, Stacey Simms 15:53 but I'll try to follow up with them. I you know, I'm in touch with the chapter. So we'll kind of circle around and see if we can find out what happened there. But it is it that's a that was a unique one. When I saw that, I thought oh my goodness. You know, I definitely wanted to ask about it. We got another question. Heather says my son just started his first job. Congratulations. Should I have him give the employer a quick reference emergency form? Or is that not necessary? Right back to our conversation in just a moment. But first Diabetes Connections is brought to you by Gvoke Hypopen. and almost everyone who takes insulin has experienced a low blood sugar that can be scary. A very low blood sugar is really scary. And that's where Gvoke Hypopen comes in. It's the first auto injector to treat very low blood sugar Gvoke Hypopen is pre mixed and ready to go with no visible needle. That means it's easy to use in usability studies. 99% of people were able to give Gvoke correctly. I am so glad to have it. Find out more go to Diabetes connections.com and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma visit Gvoke glucagon dot com slash risk. Now back to my conversation with Moira. The question is from a parent asking whether her child needs an emergency diabetes form at work. And this is a young adult, this isn't you know, a 14 year old kid that she's driving to, Moira McCarthy 17:22 you'd say of course, my son just got a job. So he's only 16. But I consider 16 old enough. So I can think that if you are old enough to have a job, even if it's babysitting for people, you are old enough to make that decision yourself and speak for yourself. I think parents should advise their children about what they think might be a good idea. But at the end of the day, that's up to the kid in the work situation. What my daughter would do is just kind of nonchalantly when she started, she worked at a country club catering and in the pro shop. And then she was a bank teller. And what she did is after she started just like you had meters then now I guess it'd be your CGM just pull it out and say, Oh, you know, you guys just so you know, I've type 1 diabetes. If you see me doing this, don't worry about it. If I need anything, I'll let you know. That's it. Stacey Simms 18:12 That's funny, because that's what happened to Benny. He just got a job as a grocery store clerk, he's stocked shelves, is that what it's called? He stock shelves. You know, it didn't make a big deal about diabetes. I don't think he even told them before he started. And then when he was going a little bit on the low side, and he took out his pump where his CGM numbers are and said, Hey, I'm going low. I've type one, I just need to sit down for a minute, you know, I'll keep you posted. I'll let you know if I need anything. And it was he said it was really easy. And of course, I was thinking to myself, the worst amount that I am like, it didn't even occur to me to, like, fill out a form or let them know. I mean, he does take care of it. And I'm lucky that...
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Up Everest, Through the Sahara, Across Canada - Extreme Athlete Sebastien Sasseville (Classic Episode)
04/01/2021
Up Everest, Through the Sahara, Across Canada - Extreme Athlete Sebastien Sasseville (Classic Episode)
Sebastien Sasseville has an incredible track record of athletic accomplishments. He's climbed Mt Everest, finished six Ironman races and completed the brutal Sahara ultramarathon. In 2014 Sebastien ran across Canada - the equivalent of 170 marathon in nine months - to raise awareness for diabetes. He was diagnosed with type 1 as a young adult. These days, Sasseville is a motivational speaker and author and late last year he teamed up with Tandem Diabetes as a brand ambassador. This interview was taped in the summer of 2015 at the Friends for Life Conference. ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go!
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The Useless Pancreas: A New Place to Find Type 1 Diabetes Products
03/30/2021
The Useless Pancreas: A New Place to Find Type 1 Diabetes Products
There are a lot of terrific small businesses creating products to help with diabetes management. We've seen families with 3-D printers making insulin vial cases, people who've come up with better ways to make your CGM stick to your body, and creative clothing with places for pumps. What if you could search through those products in one place? That's the question Adam & Celeste Litt decided to answer when they started their Adam was diagnosed with LADA a few years ago. He and Celeste share what that diagnosis was like (he was initially misdiagnosed with type 2), how they teach their two boys about dad's diabetes, and what they hope to accomplish with the Useless Pancreas. In Tell Me Something Good lots of teens and young adults with new jobs and a bunch of sports milestones to brag about. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode Transcription (rough transcription, has not yet been edited) Stacey Simms 0:00 Diabetes Connections is brought to you by Daria health manage your blood glucose levels increase your possibiLitties by g evoke hypo pin, the first premixed auto injector for very low blood sugar, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:22 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:28 This week, lots of people get a diabetes diagnosis themselves or in their family and they create a product or write a book or invent something to help others. Adam and Celeste Litt took a Adam Littt 0:40 broader view. I just see all kinds of different really cool stuff out there. And I think that's part of the magic as well. Stacy is there's so many questions out there. What is the solution for this? How can I help this and you get shipped to all these different places and sites. It's not really in one place and people don't always really know where to go. Stacey Simms 1:01 Adam was diagnosed with LADA a few years ago, he and Celeste join me to talk about their marketplace for T1D products and services called the useless pancreas. In tell me something good. Lots of teens and young adults with new jobs and a bunch of sports milestones to brag about this podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show. Are we so glad to have you along. We aim to educate and inspire about diabetes with a focus on people who use insulin. My son Benny was diagnosed with type one right before he turned to more than 14 years ago. My husband that's with type two diabetes. I don't have any kind of diabetes, but I have a background in broadcasting and that is how you get the podcast and Adam Litt who I'm talking to this week. We connected many, many years ago. Well it was a one way connection because Adam used to listen to me on the radio. And it was just funny to think about how you know things like that kind of come full circle. As I always say for the start of every show. You know I have a background in broadcasting here. I live in Charlotte, North Carolina. I worked in radio here for 10 years. I hosted a radio morning show Charlottes Morning News, the city's top rated morning news show, basically, I got up in the middle of the night and got to work by four o'clock in the morning to go on at five for four hours a day trapped in a box with a couple other guys. And we had a great time. But I love that. But after 10 years of getting up at 233 o'clock in the morning, I definitely had had enough. But talking to Adam just reminded me about that connection that you have with your listeners when you do a job like that, you know, he commuted into Charlotte and listened every day. And my son Benny was born in 2004. And I was on the radio at that time. So my listeners went through all of that with me. And then they went through his diagnosis with me. So he knew the story. Well before the podcast, it just took me back because I was very lucky to have the career that I really always dreamed about having when I was a kid. I worked in radio first part time. And then I worked in television for more than 10 years as a local reporter and anchor then came that decade in Charlotte doing radio. And then you know, it's funny, I've really I've spent almost the last 10 years and I hadn't realized it, I left the radio station at the very end of 2012. And I did some freelance work. I worked as a multimedia journalist, it's really a one man band, you know, you're shooting your own stuff for about a year after that just for health insurance. But I've been on my own running my own business for a long time. And I hadn't realized how long until I talked to Adam and we figured out when he must have listened to me. I don't miss getting up in the middle of the night and I don't miss some of the nonsense of working at a radio station like the one I was at and that's another long story. I do feel extremely grateful to have been able to kind of create this radio job for myself and to be able to serve you and do this and have listeners all this time. We're coming up on six years this summer and every time I get a Litttle radio reminder like that I just want to take a moment be thankful so I really appreciate having you here we will talk to Adam in just a moment and his wife Celeste but first Diabetes Connections is brought to you by Gvoke HypoPen and you know almost everyone who takes insulin has experienced a low blood sugar and that can be scary. A very low blood sugar is really scary and that's where Gvoke HypoPen comes in. Do you focus the first auto injector to treat very low blood sugar? Gvoke HypoPen is pre mixed and ready to go with no visible needle. That means it's easy to use. How easy is it you pull off the red cap and push the yellow end onto bare skin and hold it for five seconds. That's it. Find out more go to Diabetes connections.com and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma visit Gvoke glucagon.com slash risk. My guest this week saw a gap in the diabetes community and like many of us, they jumped into filling. Adam Littt was diagnosed with LADA A few years after being initially mis diagnosed with Type two if you're not familiar with LADA 80 is latent autoimmune diabetes in adults it's also called type 1.5 it presents a lot like type two but it's really type one it's just slower moving is a really good kind of basic definition of it and i link up more information we've done lots of episodes on LADA but i like to explain it you just you know you never know if this is somebody's first time hearing about it adam and his wife celeste have started a new website it's a marketplace for diabetes products called the useless pancreas and i will link that up as well in the episode homepage it is useless pancreas all one word full disclosure my book is listed as one of the products on that website but they don't pay me any extra to list it there and no money exchanged hands for this interview adam and celeste thank you so much for joining me it's great to talk to you today Adam Littt 5:48 thanks so much for having us yes thank Unknown Speaker 5:50 you Stacey Simms 5:51 yeah this is gonna be fun i have so much to ask you about our charlotte connection and your website and the uselessness of everything that you're doing but let's start at the beginning here if we could adam tell me about your diagnosis Adam Littt 6:06 sure yeah be happy to go into that stacy so i was a ladder diagnosis the you know late onset type and at first and probably probably very similar to a lot of people's stories out there i was diagnosed as a type two and this was around my mid 30s and you know what stacy after that they diagnosed me type two that was a Litttle pudgy and i said yeah i'm just gonna go ahead i'm going to lose weight i'm going to work out i'm gonna get really fit and when i lost weight when i started losing weight i started losing weight at a pretty rapid rates where people started making some comments like well you're you're getting reasonably thin probably a Litttle you know fitter than where you ought to be and i blew this off i completely disregarded it you know i had my a one c's checked for a couple of years and they were maintaining in the mid sixes and you know everything was fine and but i kept getting healthier and healthier as far as weight control and diet and everything else and it wouldn't budge and then i went off to las vegas with some friends we partied a Litttle bit out there and after that i came back i was feeling really bad the day after i came back as you can imagine from las vegas and it went down in my workplace they're sort of infirmary set up and they took my sugar because i was again a type two in their eyes and it's 250 and they said you know let's go ahead and check you out and they they look they found ketones like you're off to the hospital right now and then you know after that it was the typical story you know you go see the end oh you do the tests you get the diagnosis my a one c somehow went from six and a half to it was 10.5 i think for that three month period so it was some rapid acceleration maybe you know it was just time i guess so anyway and it just gave out and was it las vegas probably not Unknown Speaker 8:03 well it was also partly your birthday cuz your birthday was my birthday yes Unknown Speaker 8:07 that was my my diversity is that what they call them Celeste Littt 8:10 diversity is the day after his birthday Unknown Speaker 8:14 yes yes there you go Stacey Simms 8:15 so what during this time kind of what were you thinking you know 30s is young for type two to begin with but it's not extraordinary i mean were you kind of thinking things were funky Celeste Littt 8:26 you know looking back on it i i think we saw signs and didn't recognize them up until that point so it was a Litttle scary i mean here i am with two young boys and you know thinking oh my goodness now i have one more thing on my plate adam sometimes put refers to the diabetes as his third child Stacey Simms 8:48 adam had you ever heard of LADA Adam Littt 8:50 no i had no idea as a matter of fact when my doctor first throughout the term lot i said i don't know what you're talking about she said well it's type one and a half so what do you mean type one and a half so i started looking all this up and stacy you know during this period where they do all the blood work you know you just pop every night and you're looking what is lot and i'm like i hope it's not tied to my biggest fear at that time was again a type two i was pretty well control they'd never had prick myself at all to take my pleasure my biggest fear was oh my gosh are they going to come back and start telling me i have to test my blood sugar once or twice a day well different story now but yeah we went through all that Stacey Simms 9:31 it is funny what your initial thoughts are when you get that diagnosis because we don't really have any idea right unless you're in it and so let's say i ask you because as you know in many families mom has a lot going on i'm sure adam is very responsible with his as he calls it his child that's their child there but i'm curious too when you heard he had a lot of what first went through your mind Celeste Littt 9:53 oh wow like i said before i feel like i was overwhelmed it was a change in our lifestyle we actually had to take some time off to really figure out how to manage the type 1 diabetes and how to carry things around and how to deal with all the lows and the highs and there was this learning curve at the very beginning that was just very overwhelming for me especially trying to manage and make sure that he was okay he obviously wasn't on any Dexcom or any pump at this point he would test his blood sugar and it would be really low there were a couple of really scary moments at the very beginning where he had some 30s blood sugar levels and just thinking also just about having to raise these kids by myself there's always that thought in the back of your mind and and or am i gonna wake up and find you know that he didn't make it to the night i was constantly worried about him all night long and just during the day when he was away at work things like that Stacey Simms 10:52 and did you know that Adam Littt 10:53 did i know she was worried about me stacy well to that extent no i at all it's nice to to hear she's always been a wonderful caretaker and she carries around two Litters for me stacy wherever we go you can always see the concern obviously it did make me think stacey have you know when i was first diagnosed though i remember i was sitting downstairs with one of these lows that she was talking about and my older son who was still very young at the time she may be honey he was what like seven or eight at that time something like that he was looking down as i was experiencing this this low and shaking and trembling and not knowing what was going on i remember this this vividly and he didn't really know how to help me either and that was actually a reasonably scary moment it was all just brand new so glad we're you know we've learned since then Stacey Simms 11:45 yeah are the kids kind of on board now i mean they're they're tweens i guess we could call them at this point do they kind of i'm sure they understand more and they they're you know they can help out if needed Adam Littt 11:55 or though when we when we go out to the golf course they you know they pack smarties in the bag and stuff like that and you know if daddy ever has a severe low whatever it might be they'll go and run and get the two Litter they'll pour it for me and they'll stand by and make sure i'm alright so they're they're good kids Celeste Littt 12:12 i feel like we've been proactive about that and we've tried to prepare them a lot for how to handle an emergency situation it's really important for me to continue getting them trained in first aid cpr and things like that on a regular basis so as they get older they're just they feel competent enough to deal with a such situation if it were to arise what's the two Litter the lemon lime soda Unknown Speaker 12:37 hey it's probably sitting on my desk over there dc Unknown Speaker 12:41 what does it like storebrand Unknown Speaker 12:42 sprite is from lead oh yeah yeah it works it does a job it's quick Stacey Simms 12:50 it's funny though because i really feel like i should mention before we go any further that while you and i don't know each other you have known kind of me since benny was diagnosed because and this feels really weird to say like you listen to me on the radio i mean i don't say that to weirdly brag or anything but it is funny how you have these connections with the diabetes community that when you are diagnosed or when your child is diagnosed it's so nice to kind of i know from my experience i knew people before benny was diagnosed is why i'm bringing it up and i was able to say oh my gosh i remember and i remember this kid evan that i had met several years prior and he was this nice normal funny kid i was like okay my kid's gonna be alright because i remember evan is all right and i'm curious do you listen to wb t and we didn't talk about benny all that much but you do remember him having diabetes Adam Littt 13:37 i do and i remember i remember driving to the same company i still work for every morning and listening to you in the crew on wb t and i remember these sort of snippets and you would talk about benny and what i really heard come through i didn't fully understand even though we do have a connection to family stacey right i have a half brother that was diagnosed in 12 but you know he's you know he lives in new york and we talk whenever but i never flew him sandy but but hearing what at what i heard is i heard the amount of emotion that came through when you talked about it right and that's what i remember from those you know those discussions that you were having and things like that and you know also you know the the passion for what you were doing in the community so that that really did resonate and then you know so many years later i'm diagnosed i run across you again i'm like stacy and she's in the type one community and here it is i'm like i have to go ahead and shoot an email right now and that's that's what i did and now we get to do this really cool talk so Celeste Littt 14:38 yeah we appreciate it Stacey Simms 14:40 oh of course of course unless it's funny to think about that vinnie was so young you know i had him while i was working at wb t so it's really funny to think about when did you well i'll ask celeste i'll start with you here when did you all get the idea for the useless pancreas Unknown Speaker 14:55 how did that come about Stacey Simms 15:01 Back to Celeste answering my question in just a moment. But first Diabetes Connections is brought to you by Dario Health. bottom line, you need a plan of action with diabetes. We've been lucky that Benny's endo has helped us with that and that he understands the plan has to change. As Benny gets older, you want that kind of support. So take your diabetes management to the next level with Dario health. Their published Studies demonstrate high impact results for active users like improved in range percentage within three months reduction of a one c within three months and a 58% decrease in occurrences of severe hypoglycemic events. Try Dario’s diabetes success plan and make a difference in your diabetes management. Go to my Dario comm forward slash diabetes dash connections for more proven results and for information about the plan. Now back to Celeste and how they got the idea for the useless pancreas. Unknown Speaker 15:54 Well, Celeste Littt 15:55 it was actually Adams idea. I was visiting some relatives in Florida, and I left him at home that that visit I brought the kids down, we visit the grandparents, I guess we've kind of talked about doing something for the type one community for some time, but we weren't quite sure where we fit in yet. And while I was gone in Florida, he was up here and it just kind of hit him. He was always on a lot of Facebook boards and things regarding diabetes to find the answers to his questions and to see what other people are going through. And a lot of times people always were wondering, well, where can I get this? And what is the solution for this issue that I'm having? And so he came up with that idea? Well, you know what, let's solve these problems. That's pretty much where we started from. And I don't know if you have anything to add to that. Stacey Simms 16:46 Adam, was there like a item that you will have an aha moment where you thought, Oh, my God, I need to do this. Adam Littt 16:51 Yeah, there was there actually was Stacey, it's interesting. So yes, less left, I had quiet time. And I guess this is what I do. In my quiet time, I just start thinking of things to keep myself busy. And so yeah, it was, you know, it's amazing, because the type one community, I always in, not in a negative way, Stacy, but I always feel it's just a massive population of just really good people just looking for solutions. But the community is underserved in various ways. And on some of these big...
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Maddy Trumble: Performing on Broadway with T1D (Classic Episode)
03/25/2021
Maddy Trumble: Performing on Broadway with T1D (Classic Episode)
We can't wait to enjoy live theater again! That made us think about some of performers we've spoke to over the years. Maddy Trumble performed as Mary Poppins during that national tour and has also played Elphaba in Wicked. She was in the original Broadway production of Newsies, and many more plays and musicals. Maddy was diagnosed with type one as a kid, and always knew that she wanted to be a performer. Maddy gets real about the cost of this type of career - she's had trouble with health insurance as its tied to constantly getting performing jobs. And we catch up to her to find out what her life has been like since this original interview and during the pandemic. This interview first aired in November in 2016. ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode transcription (rough transcript, beta version) Stacey Simms 0:00 This episode of Diabetes Connections is brought to you by inside the breakthrough. A new history of science podcast full of Did you know stuff? Announcer 0:14 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:20 Welcome to a classic episode of the show. As always, we aim to educate and inspire about diabetes by sharing stories of connections with a focus on people who use insulin. Our classic episodes are a look back at some of the people's stories and research we were talking about at the very beginning of Diabetes Connections back in 2015, and 2016. We have a lot of new listeners since then, chances are you haven't gone through all 360 plus episodes. So I like bringing these to you with an update on what's going on. So I first spoke to today's guest, Maddy Trumbull back in 2016. And I had forgotten why I went looking for a Broadway play person in the first place back then. Well, it turns out, we had just seen Newsies, the Broadway touring company, here in Charlotte, and Benny and Leah, my daughter, we were all talking about how athletic a show that is, if you haven't seen it, and there's, you know, the original movie, certainly, but they made a movie out of the Broadway show. And that is really, really worth watching. It is not only singing and dancing, there's a tremendous amount of gymnastics. I mean, the choreography is, it's incredible, and it's exhausting. It's nonstop action. So Benny said to me right after the performance, he said, I wonder how you would do a show like that with type 1 diabetes? You know, he didn't say like, could you do it? His question was more like, how do you do that? How do you manage it? Which as the mom, I really liked that question. So I thought, there's got to be somebody we could talk to about that. Right? people with type one are doing everything. So I put out some feelers and we found Maddie Trumbull. She was actually in Newsies. And there's lots more to her story. And I'll give that to you in just a moment. But first, this episode of Diabetes Connections is supported by inside the breakthrough, a new history of science podcast that explores the idea of a eureka moment. its historical wisdom, mixed with modern insight, sort of a mash up between a history show and a science show. And it's funny, and it's entertaining. It's really well done. The latest episode takes a look at who takes part in psychological studies, you're the studies that are looking at human behavior that's supposed to be universal, but it turns out most of them only studying a particular group of people. That turns out to be anything but universal. It's a great episode full of surprises. I love this show. Search for inside the breakthrough anywhere you listen to podcasts, you can find it wherever you found this one. This podcast, as you know, is not intended as medical advice. If you have those kinds of questions, please contact your healthcare provider. Did you see the national tour of Mary Poppins or maybe wicked? Or maybe Newsies on Broadway? Then you have seen my guest Maddy Trumbull actually played Mary Poppins in that national tour. She has also played Elphaba, the Wicked Witch of the West before she was the Wicked Witch of the West that said wicked under all of that green makeup if you've seen that show. And as I mentioned, she's been in Newsies on Broadway as well. She was diagnosed with type one as a kid, she always knew she was gonna sing and dance and be a performer. I was really excited to talk to Maddie about you know how she does all of that and travels. Again. This interview was taped in 2016. And of course, the last year has been difficult for everybody. But when you think about live theater, it's just not happening. And Maddie I reached out to her and got an update. She says she lost her insurance when Broadway shut down. And she did she was very honest, it wiped out her savings she was paying for Cobra. So she said I wasn't willing to give up her pump and her Dexcom. We actually talked about that at the time about how difficult it was to get insurance when you're not performing steadily. So it was already difficult back in 2016. And it's gotten much more difficult in the past year. She does say I'm okay for now. I'm living in Chicago with my boyfriend working at a bakery waiting for my industry to reopen. And Maddie, I will ping you when things go back to performing and stage shows are happening again. Let's catch up. And boy would I love to come see you. So here is my interview with Maddie. And I'm calling her Madeline at the beginning for some reason. But here is our interview from five years ago. Natalie Trumbull, thank you so much for joining me today. I'm excited to talk to you. Maddy Trumble 4:40 Oh, thanks for having me, Stacy. Stacey Simms 4:42 I have so many questions about performing and what it's like. But let me back up to more of the beginning of your story. Because you grew up with type one when were you diagnosed? Yeah, Maddy Trumble 4:54 I actually was diagnosed technically on the first day of kindergarten. So My dog shot had just been diagnosed. I don't know how I can't really remember I was four. My dog had been diagnosed with diabetes that summer. My mom has a PhD in child psychology. So she This is before the internet, they had all these, you know, medical journals. And you had done lots of research on diabetes bushi knew, you know, the symptoms, like going to the bathroom lot and being really thirsty. And I remember, we went to a friend's birthday party at it was like in a park and the bathroom was like up a really long walk up a really steep hill. And I just remember I went to the bathroom. And of course, like two hours, like six or seven times, I remember walking up that hill. And I remember that was when my mom was like, I think Celine may be up so when I went to the doctor to kind of get all your shots and tests for when you start school. And I was like, Can you just throw in a type 1 diabetes test and so confusing. I found out on the first day of kindergarten. And luckily my blood sugar was not so high that I actually didn't have to be hospitalized. I think it's pretty, as I've heard, it's pretty unusual. But that was the first 15 minutes for that. I just celebrated 22 years. Wow, man. I mean, diabetes. Yeah. 22 years. I'm, Stacey Simms 6:27 what was your dog's name? That was fast. They went by fast. Maddy Trumble 6:30 Oh, the document was shosh it's um, it's, it's, it's some other language for there. I can't remember. My mom is a fuzzy, hippie. hippie. We're from Berkeley, California. Yeah. shosh. So what was it that Stacey Simms 6:48 was it funny to have a dog with diabetes and a kid with dijet confuse your friends at all? Maddy Trumble 6:54 No. Well, we used to, like, you know, we used to do our shots together. And I would give shosh her shot. And then I get my shot. It was kind of cute. We were bosom buddies. Yeah. I can Stacey Simms 7:07 imagine from your perspective, that was pretty helpful in a way. I mean, you had a buddy. Maddy Trumble 7:11 Yeah, definitely. I'm like, yeah. I mean, it's so hard to remember. But I do remember giving our shots. And then I think I was I was giving myself my own shots. And I like after a couple of weeks. You know, I know that takes a lot of kids a long time. And I think that made it a little easier. But I had, you know, I've been given my dog her shot for a little while. And so yeah, it was like, I think it made the transition a little easier. in a weird way. But that's fun. Yeah, I don't think about that often. And my dog having diabetes, I completely forgot. Yeah. Unknown Speaker 7:51 What kind of dog? What was shosh? Maddy Trumble 7:54 Oh, gosh, she's a big month. She was big and like really big and had long black hair? Not quite sure. Stacey Simms 8:01 Um, well, for is very young to be diagnosed. I mean, I understand that you don't have a lot of, you know, memories other than going up and down that Yeah. Do you remember growing up with type one? It's hard to ask again at that age, if it changed anything for you. But did you accept it pretty well? Do you? Did your friends do okay with it? Maddy Trumble 8:23 Yeah, I yeah. It's tough to remember. I think I did. I never saw it. I remember that when I was diagnosed, I was the first time I remember at least seeing my parents cry. And I remember thinking that was weird because I didn't know what the big deal was because I was just like my dog. But I and I, like I said, I started giving myself my own shots for right away anyway, I don't think I ever saw it kind of as a as a disability or something I had to deal with. I think I kind of saw it as more of something that made me special. And like every summer starting that when I was five that you know, the next year, we went to diabetes camp, we went to a family camp for a few years. And so that was always like, not a good thing. But it you know, brought opportunities and I met lots of friends that I wouldn't have met if I didn't have it. Yeah, and I don't really remember from being kids the bad times, which is good. You know, that kind of came later. Like when I became a teenager and started having some denial that disease would never go away, which is really, I still have a hard time dealing with that. But when I was a kid, it was like what am I doing on shots and my friends thought it was cool and all my friends wanted to learn how to work and then when I got a pump in middle school, my friends all wanted to learn how to give my money Insulet in case I know in case I ever needed them in an emergency. There's always a kind of an opportunity for i don't know if i You know, as a negative in my life, that kind of came later, I totally understand that my Stacey Simms 10:06 son was diagnosed very young at age two, and we're just getting now to the point where he's, he's in middle school. And he's kind of like, you know, used to be diabetes. And I love my friends from camp and, you know, I just yeah, natural for a teenager to be excited about it would be a little different, in a way. Maddy Trumble 10:25 Yeah, it's definitely like, if it gets old, you're like, Oh, this isn't going away. Stacey Simms 10:31 So when did you know you wanted to? When did you know you were interested in theater? Is that something that you always remember? Or did something happen when you were a kid to flip that switch? Maddy Trumble 10:42 No, that was always my dad was an actor. He My dad is my dad is deaf. And so he kind of became an actor, kind of by accident. He was not never went to school for it. But back in the 80s, when Children of a Lesser God was on Broadway they needed there's one. There's one character in the show who is deaf, but needs to have very good speech. And my dad speaks really well. It's really good speech for a deaf person. And anyway, so they, I can't remember the exact story. But somehow he fell into this Broadway show. And he lived in New York for a while and, and he was like a lover of musical theater, and so was my mom. So we just like always had it growing up. I remember my first one. I mean, I was obsessed with the Wizard of Oz, and all the old movie musicals. I was little. And I don't think it never was like a decision was made. And then my mom, I'm from the Bay Area from Berkeley. And there's a ton of great community theater there. And so my brother and I, just one day, my mom was like what we should you should go audition for Annie Get Your Gun, which, you know, has kids in it. And we went an audition and I think singing in the rain with the I had an umbrella as a prop. Yeah, and my brother and I, we both were. Both were cast in the show. And kind of that's sort of what changed it. I was seven, and he was not. And we both really fell in love. And then my little sister too, eventually started doing it. And she's still acting out. She's on the sound of music tour. Going around America right now. So yeah, I was always in a family is there? We all did it. We all did shows together. made it easier for my mom, she has like one place to dry. That's cool. Stacey Simms 12:35 So you have three have a brother and sister. Maddy Trumble 12:38 Yeah, there's the three of us. Yeah. Stacey Simms 12:40 I have a very ignorant question. But you said your father loves musical theater. It's hard for me to understand how someone who's deaf can have that sort of appreciation. Can you can you try to explain some of that to Maddy Trumble 12:52 me more? Yeah, I remember him talking about. I mean, he's an actor and he and to us musical theater is so much about the music, but if you've watched he like loves Jim Kelly and Fred Astaire, and he loves finding crowds, Barbra Streisand, because she's such a fantastic actor, and she, her hands, her fingers and her fingernails. I don't know if anyone loves Barbra Streisand as much as I do. But she is the longest fingers and uses her hands in a really interesting way. And so my dad, it's all visual for him. You know, he can't hear the music. But you know, engine Kelly is so fun to watch. You could watch him without music, and it would still be entertaining. I think it's like the visuals in musical theater. And he was an actor. So we talked about what to do with your hands and how hands are really important, obviously, for him to that's how he talks. But yeah, so is the visuals in musical theater. I think more for him. And this style of acting, I suppose also, because it's can be a bit more exaggerated and lots of which is something that would speak to him, I suppose. I've never asked him about that. But he was really into Gene Kelly singing in the rain was like another one of my favorites. Oh, Stacey Simms 14:12 I've seen that movie a million times my sister and I, we had we had in the olden days, we taped it off of PBS one time with our VCR. And we went over and over again. And when I see it now I wait for the pause, because there was a pledge drive when we taped it. And so in the 40 minutes or so they were interrupted for 20 minutes. So I know where those pauses come at is such a Maddy Trumble 14:41 fun drive. Oh, yeah. Yeah. Stacey Simms 14:43 So. So tell me a little bit about performing though, with type 1 diabetes as a as a teenager as a kid. I mean, I imagine you had to do a few things to help yourself out. Can you talk about that? Maddy Trumble 14:55 Yeah, I'm not really. I'm trying to think of A story from when I was a kid, I'm not really remembering. The only thing I remember, I just, I got a pump in the summer before sixth grade, which is when I played anime and anime. And I remember having to do that and having it show through my costume. And that was honestly that for me as a kid again, I've been you know, no big deal. That was the biggest deal. I remember thinking. So you know, when you are, when you're performing, you usually have to wear a microphone as well. So it's like you have one extra machine on you. Anyway, so that's what I remember. I'm trying to think of something that happens maybe that I, Stacey Simms 15:48 that's okay. I'm just curious. Did your parents like when you're performing? Do they want you to check your blood sugar before? Did you have snacks backstage? Maddy Trumble 15:56 Or do yeah, that kind of thing? Yeah. Yeah, it's tough one. Because when I, I've been lucky enough to get to play a lot of these in shows and who don't really leave the stage. I'm just thinking, like, when I played Mary Poppins. I also have no problem I kind of really rely on you have a dresser who kind of needs you backstage? Every time you're off stage to give you water and and you know, if you need to change your costume or fix your makeup, they're kind of there. But you're never really offstage for more than no 20 seconds. Wow. So I'd always Yeah, so I've been you know, they always had glucose tabs or juice. And I would always, and when I was a kid, too, I'd put, I'd have like a little box on either side of the stage and in my dressing room. And yeah, cuz it's really, I mean, it's scary to be low, no matter what. But it's really scary to be low. And you're in the middle of the show and doing a dance number. And I've never had any major. Anything. I've never been so well. But there's been a couple times where it just gets it gets a little scary. And you can't leave the stage Really? Yeah, I remember one time Mary Poppins we were doing steppin time, which is this huge, like 12 minute long tap numbers. And I was starting to feel low, and then it kind of really hit me in the middle of that ever, which is a really, really bad time. And then you don't leave the stage again for another 10 minutes. And I've never, I've always a thought every time I do a show like I'm going to have there's going to be a point where I leave the stage or I'm going to have to stop and it's just going to have to be okay. Because it's just gonna have to be okay, because that's the most important thing is not the show is my health. But I've been lucky I haven't had to, do you Stacey Simms 17:47 ever think about keeping, like glucose tabs in your costume? Because, you know, I know Mary Poppins can't be eating in the middle step in time, but you could like sneak it. Yeah, something like that. Maddy Trumble 17:58 No, I never did. That's a good. There was always something. I guess if I if I'm in if I'm ever in a show where I can't leave the page for a long time I will 100% have to have something But Mary Poppins was that that one scene was strange when I was low, because I was on stage for like 20 minutes straight. Usually there's, I could run off stage as I needed to. And there's always someone nearby. And you know, I always tell everyone on the first day stage management just so they know. And everyone's always very understanding. I'm always so curious about it. And I should come to rehearsals with like a brochure. It's on the literature. But I just tell them and they're usually Yeah, I've not had any crazy, crazy thing I've had to deal with yet. Stacey Simms 18:52 Do you have a blood shock? Yeah. Do you have a blood sugar goal? And you certainly don't need to share specific numbers with us that you'd like to be in or range that you'd like to be in when you are performing at the beginning of the show? Maddy Trumble 19:05 Sure. Yeah, definitely. I, I mean, normal for me is like a little higher a thing than most people's. I like using one and 150 and right before the podcast. I was 137. So I'm patting myself on the back. But definitely the before show, because the adrenaline and everything. It's so easy and just running around and I just did last year I did...
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Delaying a T1D Diagnosis? The FDA Considers Teplizumab
03/23/2021
Delaying a T1D Diagnosis? The FDA Considers Teplizumab
The very first treatment to prevent type 1 diabetes for any length of time is in front of the FDA right now. Teplizumab has been show to prevent the onset of type 1 diabetes in people shown to be at high risk of developing it. Stacey talks to Dr. Henry Anhalt of Dr. Anhalt is a pediatric endocrinologist and has a lot to say about what this would mean to his patients. Listen to our In Innovations, a round table on insulin pricing with Congresswoman Katie Porter. It didn't have her famous white board, but participants pulled no punches. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode Transcription: Stacey Simms 0:00 Diabetes Connections is brought to you by Dario health. Manage your blood glucose levels, increase your possibilities by Gvoke HypoPen, the first premixed auto injector for very low blood sugar, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:21 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:27 This week, the first treatment to prevent type 1 diabetes for any length of time is in front of the FDA right now. We're going to talk about the clinical stuff. But there's a lot of emotion wrapped up in this development as well. Dr. Henry Anhalt 0:40 I was trained to make people who have type 1 diabetes feel that they're never doing a good enough job, that they're at risk of developing all these complications. And you know, when you get to the point in your career, you realize that not only did that not help hurt, and then really being in a position to hopefully be able to make a fundamental difference and how that goes down. It's really hard to articulate, I have to say, Stacey Simms 1:05 That's Dr. Henry Anhalt of Provention, the company behind Teplizumab. He's also a pediatric endocrinologist, we'll talk about Teplizumab what is in front of the FDA and why this treatment is so promising. In innovations. A round table on insulin pricing with Congresswoman Katey Porter didn't have a whiteboard as She's famous for, but pulled no punches. You're gonna want to hear this. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show. I am always so glad to have you here. As you know, we aim to educate and inspire about diabetes with a focus on people who use insulin. I'm your host, Stacey Simms, my son, Benny was diagnosed with type one right before he turned two, back in 2006. My husband lives with type two diabetes, I don't have diabetes, but I have a background in broadcasting. And that is how you get the podcast. We are coming up on year six of the show. And I gotta tell you, I don't get I don't get too excited about breakthroughs or treatments anymore, because we've covered a lot of stuff that frankly hasn't panned out the way we had all hoped. But this is a little bit different. Because Teplizumab is a drug that has already been shown to prevent type 1 diabetes for three years. And for some people, they are coming up on four years. What does that mean? How do we know it's preventing it? Why is it so exciting? And you know, could this mean a breakthrough for everyone with type one, there's a lot to unpack here. So we'll get to that in just a little bit. But we've talked about Teplizaumab before with the folks from trial net, I'll link up this previous episodes at Diabetes connections.com. There's always an episode homepage for each and every episode, which more recently will have the transcription. But for every episode has important links and more information for you. quick heads up. If you are listening as this episode goes live tonight, Tuesday, I will be with a JDRF with a couple of chapters. Or maybe it's just one chapter now things have moved around a lot for JDRF. But I'll be with the Nevada, Arizona and New Mexico chapters tonight, talking about the world's worst diabetes mom, we're going to have a fun discussion about the book. And if you are in one of those chapters, you're going to get the paperback for free. If you're not in one of those chapters come along. Anyway, I've got some audio books to give away. It's always just fun to talk to you. I'll be reading from the book but having a discussion as well type one talk, it's different times because of the different states and because of where I am. So it's 530 in Nevada and Arizona, and 630 in New Mexico, it will be 830 here in Charlotte, North Carolina, I may be in my pajamas, but I hope you can join me for that. And again, I'll put a link and I've got that out on my social. I've been talking about that on social media for a couple of days. I've mentioned a couple of times this year that we're focusing on technology. And a lot of that is because 2021 is going to see a lot of FDA approvals, things have been backed up because of COVID. Um, so this year, and next year, I think we're going to see many things kind of bunched up. But some of that technology isn't mechanical, right? It's medical or what we would think of more as biological perhaps. And that's what we're talking about today. But first Diabetes Connections is brought to you by Dario health. And over the years. I find we manage diabetes better when we're thinking less about all the stuff of diabetes tasks. That's what I love partnering with people who take the load off on things like ordering supplies, so I can really just focus on Benny, the Dario diabetes success plan is all about you all the strips and lancets you need delivered to your door one on one coaching so you can meet your milestones, weekly insights into your trends, with suggestions on how to succeed. Get the diabetes management plan that works with you and for you. Darrius published study Demonstrate high impact clinical results, find out more go to my dario.com forward slash diabetes dash connections. My guest this week is the executive director of medical affairs for Provention Bio. He's also a pediatric endocrinologist and Dr. Henry Anhalt is also very involved with Camp Nejeda. He's on the board there. I believe he was the medical director at one point, but we have spoken to Dr. Anhalt before in that capacity. My cousin goes to camp there he did growing up, I will link back on our episode about camp with Dr. Anhalt because it's a really good one. And especially if you're thinking about diabetes camp, if your local campus happening this summer in person, that's a good one to listen to as well. Provention is a biopharmaceutical company dedicated to autoimmune disease. And they are applying for what's called a biologics license application for to please him up for the delay or prevention of type 1 diabetes in at risk individuals that is in front of the FDA right now. There is a gold date here that the FDA has assigned to them of July 2. So we shall see what happens between now and then. But there's an awful lot to talk about unexplained. Here's my discussion with Dr. Henry Anhalt.Thank you so much for joining me and welcome back to Diabetes Connections, it's good to talk to you again. Dr. Henry Anhalt 6:21 Likewise, Stacey, it's a delight to be back with you again. Stacey Simms 6:25 Well, I'm so interested in this news, which you know, it's hard to get excited after all this time for me. But this is exciting news. But let's kind of set the stage. If I could talk to me a little bit to just start off here. My listeners are familiar with T one detect the program that JDRF came on the show and talked about in in late December about a new screening initiative and prevention is the company that is I guess, you know, doing the heavy lifting here and doing the work to screen people. Can you talk a little bit about the importance of this project? Dr. Henry Anhalt 7:00 Well, Stacy, the first thing I wanted to do is to point out that in addition to the T one detect program, we have the type one tested.com website, which will also give people who are going to that website, additional information about screening, it's important that we take a shift in how it is that we look at type 1 diabetes. And as we all know, mostly everyone's experience. And certainly, that's been the case with my patients as a pediatric endocrinologist, they present and they come to attention when they've been having symptoms, when they're not feeling well, when they are noticed to be losing weight. And a parent says, gee, something's wrong, and they go to a doctor and oftentimes are going from one doctor to another until unfortunately, kids and adults are getting sicker and sicker and then ultimately end up in an ICU setting. That's what we used to think about as type 1 diabetes. But we now know that type 1 diabetes is really in three stages, we know it's an autoimmune disease. But the three stages are really important to highlight, because the first stage is when someone has two antibodies that are directed at the pancreas. And those two antibodies are amongst a number of antibodies. But if you have two or more, you have stage one diabetes, even in the absence of having any symptoms or abnormal blood sugars. And we'll come back to that in just a second. Stage Two is when you have those antibodies or more, and you'll have some abnormal blood sugars, but not high enough to either have symptoms, or for anybody to even recognize. And then stage three is, as I mentioned a moment ago, when typically people have symptoms and they end up sick unfortunately, and seeking medical attention. We won't know whether or not someone is in stage one, stage two or stage three, unless they do things like you just suggested and participate in the T one detect program or have their antibodies tested so that they can identify and understand where they are along that continuum. And so we now classify type 1 diabetes as soon as you have two more antibodies, but even in the absence of having abnormal blood sugar, so it's important because as therapies become more and more available, and we know that there are a whole bunch that are now coming along, some of them are pending approval. So for example, Teplizumab which is before the FDA right now. And we hope that the FDA will look at the body of evidence and the safety and the efficacy. And we currently are targeted to have an approval date in the first week of July. But it's also important to realize that there are lots of other medications that are soon to follow, that may also be of use to people who are along this continuum. for us and for the people that we care about. In the type one community, the ability for a drug like Teplizumab provided that the FDA looks at the data and says, yep, we believe it's safe and effective to prevent people from progressing from stage two to stage three. Without that, we won't know who would be a good candidate for that kind of intervention. Stacey Simms 10:58 I always get a little confused. And I know that for somebody like me, who's a lay person, it seems like we're early on in the research. But the question I always have about the antibodies is I remember years ago with trial net, and they would say things to us like, well, years ago for me when I was learning about trial that they would explain it like, well, kids usually get tested more often than adults, because things can change with children. If somebody has the antibodies, do they always develop the symptoms of type 1 diabetes? Or do we not know that yet, Dr. Henry Anhalt 11:28 the uptake of testing or the routine screening for people at risk has not been adopted widely. And that's important to highlight. And that's why the JDRF is in the middle of this educational campaign is because the fact is that for all intents and purposes, our colleagues that pediatric endocrinology adult endocrinologist are not thinking about getting antibodies, and certainly in children who you would expect, are at greatest risk. Those who have a first degree relative with type 1 diabetes, a sibling or a parent where we know that their risk of developing type 1 diabetes is 15 fold greater than the general population that it would be more widely adopted. But that's unfortunately not the case. And in adults, are point people don't think so one of the challenges with adults who ultimately develop type 1 diabetes is that the family practice dogs or the endocrinologists who may be are not involved, likely not to be involved, because they are in seeing people who are adults who develop diabetes until their 50s, or maybe their 40s. And they're not thinking about type 1 diabetes, the greater challenge with adults is around the assumption that if you're in your third decade or fourth decade of life, that you do not have type 1 diabetes, but we know that that's not the case, because people into their 50s and 60s are developing type 1 diabetes and are continuing to make insulin but unquestionably have type 1 diabetes. Stacey Simms 13:21 I'm curious, when T one detect was announced, a lot of people in the diabetes community thought and I agree with them. It was so interesting, it was such a great idea. Like let's get more screening, let's get more screening. But when I talked to JDRF, they said no, we will we want everybody in the diabetes community. But we want people outside the diabetes community to start thinking about this, what can be done to try to push this message into families that you know, don't think that they have to worry about diabetes? How are you all doing that? Dr. Henry Anhalt 13:49 Yeah, what I really focus on Stacey is the folks who are at risk, okay. And those are the ones with first degree relatives, because we know we have data from global programs where they're doing population screening, they're screening everybody, not only second and third degree relatives of people who have type one, or even first degree relatives, they're screening entire populations. And that's terrific within the context, at least right now, of research programs that are well funded. But we're facing a battle ahead of us as we get people to adopt. And we get the payers and the payer community to recognize the importance, which is part of the educational effort. However, we really need to focus right now for the hearing now, because that's achievable, attainable, and the therapeutic agents that are either before the agency now or that are coming are the ones that are going to be the most likely to benefit. And that's why I think right now at risk is the most important population to look at. Got it. Stacey Simms 14:57 Let's talk about what's in front of the FDA. I remember A couple of years ago trying to pronounce Teplizumab, and then getting really I know, but getting really excited as it seemed to, and you please fill us in, but it looked like the research was showing this is preventing that movement, as you said, from stage two to stage three, so people have the antibodies that show that they have type 1 diabetes, but it kept them from progressing to showing symptoms for two years. And then it looked like three years recently, am I getting all that right? Right back to the doctor and hold in just a moment. But first Diabetes Connections is brought to you by Gvoke Hypopen, and almost everyone who takes insulin has experienced a low blood sugar that can be scary. A very low blood sugar is really scary. And that's where Gvoke Hypopen comes in. It's the first auto injector to treat very low blood sugar. Gvoke hypo pain is pre mixed and ready to go with no visible needle. That means it's easy to use in usability studies, 99% of people were able to give Gvoke correctly, I'm so glad to have something different, find out more go to Diabetes connections.com and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma visit gvoke glucagon.com slash risk. Now back to Dr. Anhalt. And I just asked him if I was kind of getting your right that Teplizumab had delayed the onset of type one in people for up to three years. Dr. Henry Anhalt 16:29 You're getting that spot on Stacey. And I think that here, it's important to stress that how do we know that they're actually having this delay? Are there any markers that we can look at. And C peptide is the key, because for the listeners, it's important to highlight that this molecule or this protein c peptide is a measure of how much function your beta cells have, how much of your actual insulin is being produced. And the studies have shown and the authors concluded that in fact, those treated with Teplizumab had stabilization of their c peptide production, and in some cases actually improved c peptide confirming that the beta cell function is being preserved. And suggesting I may add that beta cell function is being restored. So it wasn't only this delay, but it was a delay that was marked by a direct measurable compound or protein that indicates beta cell health and beta cell function. Stacey Simms 17:40 When we talk about Teplizumab, what is that? It's I assume it's more than, you know, a pill that you would take once and never have to do again. Is it a treatment? What how do you how do people take it? Dr. Henry Anhalt 17:50 So Teplizumab and I had a really hard time pronouncing that I started working at Provention Bio in December. And I'm finally getting around to it right. And it wasn't only narrow, actually that I heard about Teplizumab when I was working back in 2008, at a hospital in New Jersey, there were these clinical trials ongoing with tech lism ab. And at the time, I became really familiar and saw what the potential that this drug had. But to answer your question directly Teplizumab is administered by IV infusion over a period, at least in the trials over a period of 14 days as one single infusion. So that's the way that the trial that we're talking about the data that we're discussing, that trial had a 14 day single infusion, so IV infusion every day for 14 days straight. That was the data that we talked about was the outcome of that trial. Ultimately, though, the FDA will make the decision of based on the data that exists, how many days of infusion, etc. Got it. Stacey Simms 19:14 But to be clear, when we're saying it's three years later, those people that they're measuring three years later had, it's still from those first and only two weeks. Dr. Henry Anhalt 19:23 That is correct. So people had a two week infusion, and this population was followed out. For quite some time, actually, the recruitment took seven years, but this population has continued and when you have this rolling admission into a trial, it becomes a little bit difficult to to characterize, but suffice it to say based on the appropriate data analysis, that's the conclusion that the authors came to and obviously incredibly encouraged by those results. So with the follow up time, We have nearly a year later, it shows now approximately three years, Stacey Simms 20:05 I may be jumping to conclusions and correct me if I'm wrong. But I'm sitting here thinking, if my son Benny had gotten something like this at 23 months, and we could have delayed the onset of type 1 diabetes, until he almost went to kindergarten like that, to me, I know that there's more implications down the road, but just the idea that he would be able to communicate a little bit better. With me, maybe he could pronounce diabetes, there would be some other things that we could have some really difficult stages that we could have skipped. And I know that you're looking for a lot more than that going forward. But man,...
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"Has It Changed My Life? Absolutely" - Julie's Islet Cell Transplant (Classic Episode)
03/18/2021
"Has It Changed My Life? Absolutely" - Julie's Islet Cell Transplant (Classic Episode)
Julie Allred received two separate islet cell transplants ten years ago. How is she doing today? Diagnosed at age 10, Julie was told she would never have children and she wouldn't live to see age 30. She’s proved her doctors wrong on both counts – her daughter was married a few years ago – but she did have a lot of trouble with unpredictable and debilitating lows in her 30s. These lows were so unpredictable and dangerous that she not only stopped driving, she barely left her house. Then she found out about a clinical trial of islet cell transplants. This interview was first aired in January 2016 ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode transcription: Stacey Simms 0:00 This episode of Diabetes Connections is brought to you by Inside the breakthrough, a new history of science podcast full of did you know stuff. Announcer 0:13 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:19 Welcome to a classic episode of the show. As always, I'm thrilled to have you here. Glad you could join me. And these classic episodes are where we revisit terrific interviews, really great guests from the early years of this show that you might have missed the first time around. There is a new excitement right now about islet cell transplants, this thinking has been around for a while. But the problem has been that once the cells are transplanted, they're immediately attacked, you know, so the islet cell trials of the late 90s and early 2000s, didn't pan out the way that we had hoped. But new science, new technology is showing a ton of promise. And we're going to do some future episodes on what's in the works. There are at least two really big projects moving to clinical trials. I'm thrilled about this because it always seemed like it made so much sense. And this kind of stuff was around right as we were coming into the community, me and Benny and my family 14 years ago, it was kind of the tail end of when they realized that while it worked well for some, it wasn't going to be the cure type of research for many, many people that it had shown so much promise to be. But it really is important to remember that islet cell transplants worked really, really well for some people and you're going to hear from one of them today. I spoke to Julie Allred in January of 2016. More than five years ago now. She was diagnosed at age 10. And she was told she would never have children and that she would not live to see 30. She has proved her doctors wrong on both counts. Her daughter was married herself few years ago. But Julie did have a lot of trouble as she moved into her 30s with unpredictable and debilitating lows. These low blood sugars were so unpredictable and so dangerous that she not only stopped driving, she barely left her house, you'll hear her talk more about that this was not your typical low that almost everybody who uses insulin has experienced. Then she found out about an islet cell transplant clinical trial. She shares the whole story and I'll give you more of an update on how she's doing in just a moment. Spoiler alert. She's doing amazing. This episode of Diabetes Connections is supported by inside the breakthrough a new history of science podcast full of did you know stuff. The most recent show is all about unpopular science. One of the stories, it's bonkers. It's about a scientist who discovers the importance of washing your hands. The death rate at his hospital drops once he starts telling people to do this. But then they think he's insane. They discredit his theory and they lock him up and they stop washing their hands. You have to hear it. You can find inside the breakthrough wherever you found this podcast, and this podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Judy Allred had two islet cell transplants, one in 2011 and one in 2012. She is going to tell the whole story here in just a moment. But I want to give you a quick update on how she is doing now. 10 years later, she says she still uses just a few units of basil insulin a day. She does wear an omnipod but she says she uses it just for basal. She very rarely boluses. And she says the only time she goes low is if she quote makes a bad decision when bolusing for food because she's so rarely does it anymore. This really changed her life. I should also mention that I know Julie because she was our elementary school nurse. That's who I got to send a little Benny to when he was in grade school. How lucky was I? Julie Allred. Thank you so much for joining me. Julie Allred 3:57 Thank you for having me, Stacey. I'm excited to talk with you. Yeah, I think this Stacey Simms 4:00 is gonna be fun. It's always great to. For me, it's always interesting to learn things about people with type 1 diabetes, but it's also fun when I get to talk to to a friend. So thanks for agreeing to do this. Tell me your story. Yeah, tell me your story. You were diagnosed with type one, when you were just 10 years old, right? Julie Allred 4:20 I was 10 years old and that was in the late 70s. So why can I tell people always that was before we had all the technology of course that we have today before we had manmade and storm. No glucometers we didn't even have Diet Coke. You know, what was that good old unsweet tea with a saccharin tablet. Those were your choice. Stacey Simms 4:42 That's amazing to think about. How did you how did you manage diabetes before home meters. Julie Allred 4:50 There was no homie here correct. So I use urine that we put in the test tube with some little tablet sets. He has done turn colors and it was a good gang. If you only do that, if you felt bad, there was no certain schedule to when you tested your urine. And as you're probably aware, urine sugar in your urine shows up about six hours after it shows up in your blood. So really, when you tested that urine and found out, you know, you had sugar there, it was well beyond the time that your blood sugar would have been half. And you didn't do anything about it. When you saw it there, you just made you aware, there was that insulin you took in the morning insulin, you took it bedtime. And in the middle of the day, there was nothing, there was no sliding scale, there was no carb counting. Nothing like that we ate by the exchange diet, which some people may be familiar with, and maybe not the day, but so many carbs, so many fats, and many fruits and vegetables. So all the things that everybody is familiar with now all the technology, all the things we have to keep ourselves healthier and and make things easier for non existent bands. Stacey Simms 6:04 Now I've heard you speak and you've talked about how the doctor said you were not expected to live to 30 that you would never have children. Of course, you do have a great a daughter who I've met. But But did they really tell you that? Or was that something you were just aware of? Julie Allred 6:20 They never told me I found that out and my 30th birthday party. Because my husband had a birthday party for me, of course, my family came my daughter was three at that time. So uh, my mom's sitting in the corner crying, you know, we're having a party, I'm like, what's wrong. And that's when I found out when she told me there, that when you were diagnosed, they shared with us that you were not expected to live to age 30. And that you definitely would not be able to have children that was just not in the cards for people who are diagnosed. And again, you know, diagnosis, disposable syringes were the new thing. So just all the technology that that has come about, exist in the time that I've been living with diabetes is amazing. Stacey Simms 7:07 I'm just trying to have the perspective that your, your mom, Julie Allred 7:10 your mom had? Well, I think about that. And you know, you mentioned I'm a school nurse, my school nurses, when I was a little girl that That being said, I didn't check my blood sugar at school. So mom packed my lunch, I ate that. But other than that there was not really anything, per se to do for me at school, you know, unless I complained about not feeling well, or something the teacher would call her but they're just the things that are available today. The things that we do today to manage things so closely. We're just not available Batman. So yeah, it was not a concern. Stacey Simms 7:46 I'm just trying to think of her being told you would not live to be 30. And then being at your party, must have been an incredible ride for her. But as you got older, you began to have some real difficulties living with diabetes. I know you had a lot of episodes of low blood sugar. Tell me about that. Julie Allred 8:05 My dad, so I did very well, I actually, you know, got a insulin pump in 1990, of course, glucometer in the early 80s. So I was kind of always trying to stay on the cutting edge with technology and have the newest latest and greatest thing to help me manage. And I did really well. I still was doing really well as far as how I had managed, not that I always did absolutely everything I should the best I should. But I had been fortunate enough to not to experience any of the complications that are a lot of times associated with type one didn't have any problems with my kidneys, I had great steel. None of those things that a lot of times people began to have problems with as they move into 30 plus years with type one. And I was 34 years with type one, the problem that I was experiencing, experiencing was those unrecognizable low blood sugars. And that started probably in 2007 or eight somewhere around there. It it became more difficult for me to know when I was having a low blood sugar, the symptoms changed. And they became less evident to me. And as time went on, they just eventually just went away. I didn't have any signs or symptoms until I was so low that I couldn't help myself. I would get to the point where I realized that I needed to do something that at that point, I couldn't do anything for myself. I had to rely on someone else. So you were in that slow traveling. Stacey Simms 9:46 You were driving, right? Julie Allred 9:49 I was driving. And many times I would even was married that's my daughter who was now will be 21 next week at that time she was you know in her Team so not driving yet but a couple times we'd get to a stop sign or a stoplight and she would put the car in park and take the keys away and call my husband because she knew you know that it wasn't safe. And I did have a couple episodes where I ran off the road. Fortunately for me, and others never hurt myself or anyone else. But it the discussion, the next discussion at my doctor's appointments going to be taking my driver's license away, because that was unsafe. Stacey Simms 10:27 It's so scary to hear about. Julie Allred 10:29 All that being said, I still had the latest and greatest, I still have the newest pilots. I had a dexcom CGM. At that point. I was doing all I needed to do. And of course, my medical team was doing all they need to do to help me. It was just that that was my complication. I guess you can put it that way. But I just was not able to feel those lows and do anything about them. And enough time to help myself. Unknown Speaker 10:55 Is that how you get into work was Julie Allred 10:57 not an option either. Yeah, I was working about 10 hours a week was all I could manage? Stacey Simms 11:02 Is that how you were able to get a trial? Julie Allred 11:05 Yes, that is how I was able to get into the trial because I laugh and tell you how to be a fairly healthy, unhealthy diabetic to qualify for the study that I participated in. That being said, you could not have any kidney issues, all those things that I talked about that I was fortunate not to have experience. But the low blood sugar. The hypoglycemic unawareness was the key to qualifying for the study I participated in. So they asked me about how many low blood sugars I thought I had in the past year, that one of my first visits, I have no idea. I was horrible. I was mad at writing down my blood sugars. But we went back and looked at at the month, at one month that had passed. And from that guesstimated that over a 365 day period, I probably had 300 I think we came up with 386. Wow. was until a by definition for them a low of anything. 54 below. Stacey Simms 12:05 Oh my gosh. Julie Allred 12:07 Right. Wow. How did you Stacey Simms 12:09 feel during this time? Was this something that you were used to? Or was it did you feel lousy every day? Julie Allred 12:17 No, I said, I felt bad. And and the left felt bad. But I didn't realize how bad I felt. A lot of it was my normal. I slept a lot. You know, when I was at home. I felt like I never slept well. And I guess I probably didn't two, between two and three a 3am was probably my worst time. That's when I would have the most severe loads. And of course, you know, everybody else is asleep, too. So that makes it even more difficult. But I just always my, my constant thought was when I could lay down if I got up to do something, it was how quick Can I get finished with it. So I can sit back down so I can lay back down. Because to me all I saw, you know, 15 minutes of laying back down, and I'll feel better. And that was just never the case. Unknown Speaker 13:10 As Julie Allred 13:12 I didn't do and the probably the year, year and a half before my transplants I was became pretty isolated. I didn't say that at the time. But I say that now, I just didn't go and do things. I didn't go out of the house a lot would find an excuse not to go to a party or you know not to go to dinner with somebody because I was always afraid of what was going to happen when I was there. And I of course didn't do anything by myself. Nothing. I didn't even go to the grocery store alone. Somebody was with me all the time. So that was very frustrating for me. And for my family. Of course, let's talk Stacey Simms 13:50 about the clinical trial, you have been through two procedures right for transplanted pancreatic islet cells, the cells that produce insulin in 2011 and 2012. And I'm gonna I'm gonna walk through this, so tell me if I get this right. But this is the operation where basically they they put the islet cells into your into the liver, right, which helps. And then they take over the job of making insulin. When you went through this, did you know was it the kind of trial where and I forgive me for my ignorance? Are there people getting placebo islet cells? Or is it all everybody gets the real thing because you're going through surgery and you know, Julie Allred 14:33 right? Everybody gets the real thing? That's correct, because these are human hours that are that are donated from organ donors just like any other organ would be donated. So they use the whole pancreas normally for a pancreas transplant. But a lot of times even when you have a donated pancreas, it can't be used because in the process of organ donation, you know, of course thanks at a higher level some things at a higher level level than others, the kidneys and pancreas work together in the body and to to isolate both of those organs. Of course, the kidneys are more useful, you have two kidneys, those can go to two separate people, all the necessary blood vessels that are needed to do those transplant go to the kidneys. First, the pancreas is next on the list. So a lot of times even though you have a pancreas that may be suitable to use, you don't have all the necessary blood vessels that go with them. So that keeps it from being available for transplant as a whole organ. So what they do is use that organ and isolate the eyelet sales from that pancreas and transplant them. And that is how I received the alpha cells I received. How, yes, that's what see those on the waiting list for a heart or, or lung or kidney or whatever, and the head has to be matched in the same way you have to go through all those all those same steps. And then check with your organ donor. Stacey Simms 16:00 Do you then after the surgery take immunosuppressant medications? Julie Allred 16:06 Yes. How is that because everyone that Stacey Simms 16:09 I'm sorry, Julie, everyone that I've heard talking about this, they always say, Well, that sounds great. But the drugs you have to take to prevent rejection are so harsh. How is your life since then? Julie Allred 16:21 Well, it took a little bit in the beginning to get all those things regulated. And and I'm not saying it was easy. But it was a lot easier than what I had been going through. So taking those five or six pills a day seemed like nothing to me, compared to the life I had been living compared to the to a low blood sugars to not being able to work, all those things that have, you know, had gone on before. I did have a little problem with Jia upset in the beginning. But again, it's just getting all their things regulated, you know, for each individual. And that happens with anybody with a transplant. And once that happens, I did not experience any terrible side effects. I still take those medications on two times a day on a daily basis. And they're just part of just part of my life. Now, a lot of people say, Oh, you have to take pills now. I do. But all those other things that were issues or are not issues anymore. And I guess it depends on how you look at it. And it was a wonderful trade off for me. I would do it 100 million times over again, all the all the bad parts, the good parts, were just a million times better. Well, here we are five years ago, there were issues right here we are almost five years later. And when I been here, kind of not participated in that study, I would say I would not be unfortunately. And I am I have a driver's license, I work a full time job I volunteer I'm engaged in, in the life of my child and able to participate and do things that I have always wanted to do. But always felt a little bit hesitant to do and especially in this, you know, four to five years prior to the transplants that I just didn't allow myself to do those things. So people say well, you have a normal life, not really life like I've ever known. That's a good point. Stacey Simms 18:21 Tell me about what you do for diabetes because I remember reading that initially at least after the surgery you still worn insulin pump Do you still check your blood sugar? What do you do now? Do you consider yourself cured? Julie Allred 18:34 If you can't say cure technically and no I'm not because I did were the insulin pump after the first transplant because even though those eyelets were working, I didn't get the equivalent number of hours to what you know a normal person would have. So I continue where my insulin pump I went from taking 75 units and on a day to 11 units between that first and second transplant and then after the second transplant I was insulin free for 96 days completely insulin free. Again I had a little issue with some of the medications and of course the major side effect to those medications or damage to your kidneys and or pancreas. So they did damage I had some toxicity to one of the medications and they believe they damage the islets a little bit. So I started back on insulin and June after the second transplant unsavoury of 2012. And I've taken a small amount of insulin at bedtime since then, Stacey Simms 19:39 but that's it. You're not wearing an insulin...
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"It Doesn't Have to be Serious and Scary" - Talking About Lows with Ginger Vieira & Mike Lawson
03/16/2021
"It Doesn't Have to be Serious and Scary" - Talking About Lows with Ginger Vieira & Mike Lawson
How do you treat lows? We're not just talking about candy vs juice. Treating lows also means managing expectations, considering mental health and even addressing other people's reactions. join us for a great discussion about what can be a frightening issue for kids and adults who use insulin. Mike Lawson and Ginger Vieira both live with type 1. They explain the thinking behind the book and talk about their own experiences with low blood sugar. Stacey shares her experience as a parent of a young child with type 1 who couldn't articulate when he felt low. In Tell me something good, I checked in with the folks from Children with Diabetes Friends for Life. And I have some fun, professional news about Benny. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode Transcription: Stacey Simms 0:00 Diabetes Connections is brought to you by Dario health. Manage your blood glucose levels increase your possibilities by Gvoke Hypopen the first premixed auto injector for very low blood sugar and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:22 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:28 This week I'm talking to the authors of the new book When I go low, Mike Lawson and Ginger Vieira have lived with type one each for a long time and they have their favorites when it comes to treating lows. Ginger Vieira 0:41 Gummy lifesavers, I really like because they don't freeze and they don't rot. So I put them in the car. Each gummy lifesaver has four grams of carbs, I think Skittles do freeze. It's very hard to chew frozen Skittle but they also have one gram of carb. You gotta keep stuff in your car. Stacey Simms 0:56 your car frozen up north down here in the south. We worry more about stuff melting this time of year, Ginger and Mike and I go in depth on lows treating managing mental health around them. And how those of us without diabetes might better support our loved ones during and after lows In Tell me something good. You all wanted to report good news at medical checkups. So we'll talk about that vaccine rollouts. And I have some fun, professional news about Benny, this podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show. I am always so glad to have you here. We aim to educate and inspire about diabetes with an emphasis on people who use insulin. My son Benny was diagnosed right before he turned two more than 14 years ago. My husband lives with type two diabetes, I don't have diabetes, I have a background in broadcasting. And that is how you get the podcast. I love talking about children's books. And not just because my kids are old now. And all the children's books are put away in a closet. But it's such a wonderful, wonderful tool when you're teaching not just about diabetes, but about so many things. And of course, when Benny was diagnosed, he was so young. You know, he was 23 months old. We were reading tons and tons of picture books anyway. And one of the first things I did was look around to try to find something and short there were some terrific diabetes books for kids back then our favorite was one called Jackie's got game. I don't know if that's in print anymore. But there just weren't a lot of books. And now Gosh, I feel like every other week a new picture book for little kids with type one is coming out. And that is fantastic. You know what we need more of? And Mike and Ginger, maybe you can get on this. I think we need more books for middle schoolers, older elementary school kids, even high school kids that aren't so much about type one, but have a protagonist with type one. And it's just there. There are a couple of books like that we've talked with the author KJ Howe wrote a book I'll link that up. Kurt Anderson has a book as well. I'll put those in the show notes. But they're for adults, and I wouldn't in good conscience have a middle schooler read some of the stuff that's going on in those stories. So I would love to see that. So get on that guys, right? Not like you have anything else to do. But this episode is gonna be about more than books. Ginger and Mike are longtime advocates and hearing them talk about low blood sugars was really eye opening to me, I learned an awful lot even after all of these years. I think adults with type one are going to really enjoy hearing them talk about their experiences. And parents, we cannot learn enough about listening to our children to adults with type one about what they need from us and want from us and how we can help support them. And even though Benny is more independent every single day, I still need to learn a lot about backing off helping and supporting and not smothering. So this was a really good discussion for that. Okay, we'll get to Ginger and Mike in just a moment. But first Diabetes Connections is brought to you by Gvoke Hypopen. And this is exactly what we're talking about today. Almost everyone who takes insulin has experienced a low blood sugar and that can be scary. A very low blood sugar is really scary. That's where Gvoke Hypopen comes in. Gvoke is the first auto injector to treat very low blood sugar. Gvoke Hypopen is pre mixed and ready to go with no visible needle. That means it's easy to use. How easy is it you pull off the red cap and push the yellow and onto beer skin and hold it for five seconds. That's it, find out more go to Diabetes, Connections comm and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma visit gvoke glucagon dot com slash risk. My guests this week are Ginger Vieira and Mike Lawson Ginger has lived with type 1 diabetes and celiac since 1999. She was diagnosed with fibromyalgia in 2014. She is the author of five books. We have talked I heard before on the show about some of those books, especially pregnancy with type 1 diabetes. I will link up tons of information about Ginger and those other books so you can check them out. She has two little girls, they did a read along on YouTube. But with this book, I will link that up as well. You've probably seen Ginger jumping rope on Facebook or Instagram. She is very active. She's I mean, she's certified in coaching, personal training and yoga. Mike Lawson was Misdiagnosed with Type two when he was 20. It took more than a year for him to get the right diagnosis. He had previously worked with diabetes hands Foundation, that's where I first met him years ago, he now works for a theatre production company in San Francisco and with the insulin for all movement, and Mike is the author of another book called Open up your bag. We've talked him on the show about that as well. I'll link up all of his stuff. And I will also include diabetes doodles, which Mike talks about here, Ginger, and Mike, thank you so much for joining me this book is I was gonna say just adorable. But it's so much more than that. And I can't wait to talk about it. Thanks for being here. Ginger Vieira 6:02 Thanks for having us. Mike Lawson 6:03 Yeah, nice to see you. Stacey Simms 6:05 A little bit later on. I want to talk more about the substance here. It's always so helpful to get insight into how things feel so I can help my son more. But let's start and Ginger, I’ll ask you, how did you all come up with the idea for this book? Ginger Vieira 6:20 You know, it came together with a few things that just kind of were wonderful coincidences, Mike had just illustrated and wrote the book, open up your bag, which is on the shelf behind him in the video. And at the same time, on the other side of the country, I was reading children's books to my kids who don't have type one, thinking about the time when I've had lunch with a bunch of kindergarteners who had type one, and how incredible it is that at that age, they have to count carbs and take insulin and prick their fingers and have all these gadgets in their body. You know, I'm 35. And I can't stand wearing a CGM anymore. It's like, and to be that little and deal with the burdens that come with this. And then I know as a mother, right, like trying to get my three year old potty train or even when they are potty trained, being like, do you need to go to the bathroom? They're like, no. And then 10 minutes later, they're like rushing to the bathroom because they can't you know, and to listen to your body is a skill that you build and detecting the symptoms of a low is a skill and a degree of self awareness. That is a lot to ask of a little kid. Yeah, that's a long answer to question. Stacey Simms 7:31 No, it's a great one. I do have follow up, though. You were having lunch with kindergarteners with type one? Ginger Vieira 7:36 This is a long time ago. But it really stuck with me that I was invited to meet a bunch of the kids in the town where I grew up who have type one. And low blood sugars are terrifying. And so it's I'm even more aware of what I witnessed now that I have little children. I have a three and a six year old. And to imagine them having to do what I watched these five year olds doing. I was diagnosed with 13. Right and it sucks at any age. And like you came on and talk to us a while ago about open up your bag about that book Stacey Simms 8:04 that ginger, which is great. I don't know if you were surprised. I was not because the you know, the the diabetes community of parents that need something like that is so responsive when there is something good. It seems like you're a little bit overwhelmed by the response that you got to that. Can you talk a little bit before we talk about this book about what's happened since Mike Lawson 8:21 well, open up your bag did get some great kind of following from folks who pretty much the general sort of comment that I received was like, we just needed something there just wasn't enough, maybe there are a couple of their books, and they're all every kind of type one book that I've read is great. So I'm not here to kind of knock any of the other stuff that's out there. But there's just not enough, especially if you're kind of breeding it every night before bed, like it'd be nice to have a second title to read and open up your bag. And when I go low, both of them are just kind of their happy books with Ginger just said kind of sounds a little bit scary. Like kids can't recognize these symptoms and stuff like that kind of is a scary topic. But the book that Ginger wrote really does it in a very light hearted way. Let's kind of just talk about the symptoms. And let's talk about how we're going to kind of treat them and it's not scary, it's happy and jovial and it's fun and open up your bag as well as kind of like, let's just kind of collect our diabetes supplies and kind of make a little singsong about them. That's kind of been the general reception, and it's been great. Stacey Simms 9:28 So let's back up and talk about your experiences you both live with type one. It's been a while it may surprise some people I doubt it because we have a really well educated and fabulous audience. But it may surprise some people to hear that they still have low blood sugars, like, still? And I say that with humor, right? We're not judging. This is not something that goes away. Mike is showing his little supplies nearby. But I'm curious if there was as you were writing this book and ginger, let's start with you, as you were writing this, what about your own personal experiences that kind of been formed, what went into it? Ginger Vieira 10:01 I mean, a big part of what so there's several characters in the book and everybody except mom, cat has type 1 diabetes, and they all are sharing different symptoms that they feel when they're low. And that really for me, I, you know, I know that when I'm low and I'm on a treadmill, one of the first symptoms I feel is that the front of my eyes going numb, versus when I'm in bed, and I'm waking up in the middle of the night, and I'm low. The first symptom I feel is that I wake up and I like, Why the heck am I awake at 3am? You know, and it's not till I sit up there, I'm like, whoa, I'm low. And so, you know, I figured that out when I was like, 22. So to ask for little children to like, be that self aware is, it's an idea that we're really trying to offer them because the same way that you can encourage a little girl to know that she's smart and beautiful, is through the messaging you send, right. So we're trying to help send the message that you do have the ability to feel your lows coming on and send them you know, Stacey Simms 11:03 let's let's kind of deviate from the book and kind of go further into that, because I feel like, again, and I have had occasional low blood sugars. I mean, once a year, basically, and I've shared this on the podcast, just recently, I had a low while I was taping the podcast, I went down and measured my blood sugar was 46. So it was a real low, but I'm fine. And it happens so infrequently. But I got it. I mean, I'm fine. Ginger made a mom face. But you know, I have talked to my doctor about it, I have to eat well, and be smart, you know, but things are gonna happen. And I'm not always smart. And that's okay, that's being a human being. So I just have to be prepared. But it did give me some incredible insight into just how to me how scary it was to be low, and how disorienting. And the example I gave was, there were two things that happened. One was I really wanted juice, but my husband was hanging around and he was like, What do you want to drink? And I said milk, and I hate milk. And I drank a glass of milk. It was like, and he didn't question me and I sit him later, he said, My mouth said what my brain was not thinking it was very strange. And then for the next hour, I was so hungry. I was just really, really hungry. And Benny, of course was I told you know, you believe me. So to me, it wasn't frightening because it was well controlled. I was here it was not a big deal. But it was very eye opening. So I say all that to and Mike, let me start with you, would you mind just kind of sharing what it feels like for you. And I know it's not the same all the time. But what is a low blood sugar kind of like for you. Mike Lawson 12:30 It's funny, you use the word disorienting. And that's what I would use as well. Especially recently, I've noticed a lot of my lows are kind of I'm My mouth is getting detached from my brain. And I'll be kind of, you know, a few minutes into a story about I don't know, some documentary I watched and like, why am I telling this story right now. Like, I'm just kind of rambling off details and like, my thoughts aren't necessarily connecting with kind of a point. So I kind of get rambley in gingers in the book pointed out mad. And it wasn't really until I read this picture book that I started kind of analyzing that. And I do get a little bit angry a little bit sassier. And my tongue gets a little bit sharper. So that's something that I'm noticing and trying to kind of communicate with the loved ones around me to sort of say like, Hey, this is a symptom and not necessarily to explain it away Why I can be a jerk. But to kind of like say like, Hey, if you're kind of noticing this, and you know, we haven't eaten in a while, or we just got back from a hike. Like, that could be why and let's figure out what I need to do after that. So I feel like angry and angry is a new one that I'm learning to sort of analyze, but disassociated and kind of dizzy and rambley. Am I low right now? Stacey Simms 13:46 (laughs) or is that just being part of a podcast? A little rambling? Has it is, as you said, you're sort of recognizing that a little bit more now. But Has anything changed for you over the years of being diagnosed is significantly in terms of how you experience lows? Right back to Mike answering that question in just a moment. But first Diabetes Connections is brought to you by Dario health. And one of the things that makes diabetes management difficult for us that really annoys me and Benny isn't actually the big picture stuff. It's all the little tasks adding up. Are you sick of running out of strips, do you need some direction or encouragement going forward with your diabetes management with visibility into your trends help you on your wellness journey? The Dario diabetes success plan offers all that and more. No more waiting in line at the pharmacy no more searching online for answers. No more wondering about how you're doing with your blood sugar levels. Find out more go to my daario.com forward slash Diabetes Connections. Find out more go to my dario.com forward slash diabetes dash connections. Now back to Mike talking about what has kind of changed for him over the years when it comes to lows Mike Lawson 15:03 What's changed for me is I've learned to sort of treat them and not ignore them. And I don't think that this is uncommon. I had this problem where I know a low is happening, I could feel it and sort of in my head, I'm like, well, maybe this one will rebound on its own or will take care of itself. And I'll kind of just sit and wait until it's like an emergency. And that usually then leads to me eating anything I can get my hands on which then we you know, like, it's a cycle of kind of. So I've been trying to learn, like, if you feel that symptom, like let's take care of it right now. And that's made them a little less drastic and easier to recover from Ginger Vieira 15:44 I mean, a couple things came to mind when you asked that. One is that I actually I think being a parent has made my lows feel more like an emergency, you know, because it's like, there's nothing less fun than being a playground and being 45, 45 blood sugar. like being in the middle of Costco with both my kids and then having a really bad low because of a miss time or miss guess, and insulin like that. It's just miserable. So I feel like I'm on much more alert for oncoming lows, because I hate having them as a parent. So I've also lately if I wake up a little bit low, like even 50, 55, I will let dawn phenomenon correct my low, because I usually need a unit of insulin as soon as I wake up to prevent me from rising 100 points. So if I wake up low, I've actually experimented with seeing if dawn phenomenon will fix it, and it does. And then I still end up needing a unit of insulin eventually to prevent a further rise. But it's been an interesting, obviously, I'm not like sweating and shaking with that kind of low. It's like a very steady just sitting, you know, at 55 or something. Stacey Simms 17:06 Right? That's something you have to be a bit experienced to have a backup plan. Ginger Vieira 17:10 And I'm not getting in the car, you know, it's like, right, Stacey Simms 17:13 but we've done that over the years. Yeah, I mean, you know, once you're a while in I think most people, I don't want to say experiment on themselves. But that's kind of what it is. And we've done that, you know, we've kind of let it ride and I'm right here. But let's learn. What do you think you would like you know, spouse's parents, other people around the person with diabetes who get diabetes as much as we can. But what do you want us to know about low blood sugars? Ginger Vieira 17:38 Even after it's come back up to a normal level you feel terrible for I mean, you mentioned feeling hungry for an hour, you feel terrible for a few hours. Other it's like...
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"If You Need Help, We're Here to Help You" - The Mission of Mutual Aid Diabetes
03/13/2021
"If You Need Help, We're Here to Help You" - The Mission of Mutual Aid Diabetes
When they're out of options, people who use insulin are turning to Go Fund Me accounts and other online crowd-sourcing ways of raising funds. is a new organization that hopes to help. Their mission is "to ensure every member of the diabetes community has access to adequate diabetes supplies, medications, sustainability resources via facilitated peer support." This week Stacey spoke to Emily Miller, part of the leadership team at MAD to learn more. ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode Transcript: Announcer :05 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:11 Welcome to a bonus episode of Diabetes Connections, where we aim to educate and inspire by sharing stories of connection with a focus on people who use insulin. I'm your host, Stacey Simms, my son was diagnosed with type one more than 14 years ago, just before he turned two. My husband lives with type two diabetes. I don't have any kind of diabetes, but I have a background in broadcasting. And that is how you get the podcast. Today we're going to talk about something that is relatively new in the community trying to provide help for an all too common problem, lack of resources and supplies. It's called Mutual Aid Diabetes. I noticed this on Twitter late last year, I wanted to learn more about it. So I reached out. And Emily Miller, who is part of the leadership team at Mutual Aid Diabetes was kind enough to come on. Emily, I really appreciate you coming on and talking about this. Thanks for being here. Emily Miller 1:01 Thanks for having me. I'm really excited to just kind of be able to share our story. Got it. Stacey Simms 1:05 Before we talk about MAD or mutual aid diabetes. Can I ask a couple questions about you? You live with diabetes? Emily Miller 1:14 Absolutely. I currently have type one diabetes. I was diagnosed when I was nine years old. And my dad actually was diagnosed with Type One Diabetes as well when he was about 19. So before I even had diabetes, it was like something that I even knew about, but I was diagnosed a little bit later in my childhood. And I have had it for going on about 19 years now. So I have to keep track via dates. But usually I don't think about it too hard. But yeah, about 19 years almost coming up in March. Stacey Simms 1:45 How did you get involved with mutual aid diabetes? Were you part of the formation of it? Or did you get involved after it had already been around before I spotted it on Twitter? Emily Miller1:53 Yeah. So I kind of came in, right before we had our like, first info session. Basically, during the pandemic, I had noticed a lot on Twitter and Instagram and like lots of different circles, basically, where mutual aid was popping up in different communities. So I live in West Philadelphia, you know, like Will Smith, all that kind of fun. Stacey Simms We all just sang it. (laughs) Emily Miller (laughs) It's no, it happens all the time. So I'm based in West Philadelphia. And there's a lot of mutual aid initiatives around here in terms of community fridges giving back in terms of financial mutual aid. And I love mutual aid, just because from the standpoint of asking a community what they need, and they give that answer back. And we're not turning it really into anything that's like part of the nonprofit industrial complex, or into charity or anything like that. So it's really a community meeting its own need. And as the pandemic really has gone on, a lot of diabetics on Twitter, although I'm sure some people know about the DOC, or the diabetes online community already, you know, the DOC really kind of started connecting a lot more people. And we've been doing this before pre pandemic stuff. But it was really a way for people to communicate and build that community that we don't necessarily have in our own lives. So I don't know how if your son experienced this at all, but when I was first diagnosed, my like pediatrician linked me up with another diabetic but other than her, I really didn't know any other diabetics, I just like, knew my dad. And so online spaces like Twitter and Reddit, lots of places like that have allowed for diabetics to kind of come together, domestically, internationally, to talk about these different issues that we're all facing. And so much of that is insulin pricing. At one point I had mentioned to one of my, you know, diabetic friends on Twitter that was like, Is there a fun that we can all just like dump money into and redistribute it? Because it seems like diabetics are just like sending the same $100 around to each other to fund these different things. Stacey Simms 4:06 I just want to jump in Emily and stop because there's so much that has already gone by that I want to ask you a little bit more about. And this podcast audience is interesting in that it's very well educated, it is a little bit more well off than the general population. I don't say this as anything, then the demographics that I've researched over the years, and it is very well connected, as well. But I'm not sure that everybody who listens even knows what mutual aid is. And you talked about that. You have that in West Philadelphia, but it's not official, right? I mean, it is what it says it's people just helping each other. Right. This isn't a group or nonprofit called mutual aid. I just want to be clear about that. Emily Miller4:46 Yeah. So the way that most mutual aid initiatives work is really outside of the scope of nonprofit status, or being an official organization. Different people will kind Have link up to mutual aid. And sometimes it gets formalized. Sometimes it doesn't, though. But I think a really good example of mutual aid that a lot of people know about is the Black Panthers. So back during the Civil Rights Movement, you know, they were doing a lot of community breakfasts and supply share, like helping people get medical aid, things of that nature. And that was really born out of the community of seeing the government didn't help us. And so we're going to help ourselves. And so I think for folks who are interested in learning a little bit more about mutual aid, it's basically reciprocal sharing of resources. So if one person can jump in and help this other person, they're going to do it. And then that way, if I ever need help, you know, I've kind of been able to prove that I can help out in some forms, and maybe someone's going to help me. And it's really knowing that like, no one dies today, or nobody is going to not get the care they need in order to survive. Because we are here to fill this gap that systems have created, essentially, we're going to fulfill the need, that systems that already exist have not been able to fulfill. Stacey Simms 6:09 Yeah, and there's so much of this already going on in and I'll bring it in might sound silly, but what I know is the moms groups on Facebook and local groups, I run a local group in Charlotte of 800. Its parents, but it is mostly moms. And there is a week that goes by that someone isn't getting them in the car, driving insets sensors, quite often insulin, I've done it myself many, many times to other families and individuals. And I would assume that that's kind of mutual aid, even though we don't call it that. Emily Miller6:38 I mean, that is that's mutual aid. You know, someone says, I need help, someone jumps in and says, I got that I'm going to help facilitate this for you. And I mean, same thing here, we, I think a lot of us in the community have been able to step up during this time of great need, especially when diabetics are at a higher risk for losing insurance during the pandemic losing financial support. It's just a time when more people need help. And so those requests are becoming more visible. And so now we have to kind of scale up what we're doing in order to make sure that people are getting their needs met. And I think that's something at the end of the day that I always think about is like how are we helping people? And how are we meeting those needs? Yeah. Stacey Simms 7:22 Alright. So going back to what you were talking about. You said, and I think you're absolutely right on this, it seems like we're passing around the same $100 trying to help people mutually diabetes has been linking up to us from what I see, you know, GoFundMe and trying to find ways to get help to people who may not like I can't jump in my car and drive insulin to everybody. Tell me about the financial part of this. How is that working? Emily Miller7:45 Yeah, so currently, the big goal really, for mutual aid diabetes, is to get that 501c3. So we can open up a bank account and really be that place where people can just like I said, dump funds in, and then start sending that out to people, we're in the process of obtaining that status. So while we're kind of working on our like 2.0 launch, which is coming up soon, we've created these other resources for people. So like peer to peer sharing methods, but like you were saying boosting GoFundMe is, but I think the problem of like the political side of mutual aid being like outside of the systems of governance, versus how we can help people in a way that doesn't put undue financial strain, or like running financial monetary donations out of someone's Venmo account, they kind of don't really sit together. So that's something that we've talked a lot about as like an organization of how do we get these two competing ideas and these two things that can both be true, and make sure we're honoring our community in the best way possible, while navigating, you know, the systems of, you know, the IRS and the nonprofit side of things, while also being true to our community. So, so much of the finances right now is like, if someone comes up and they have a little bit more financial resources, they're making that active choice to send that to someone's Go Fund Me, or something of that nature. Stacey Simms 9:14 I have to be honest, you Emily, I'm a little confused and pardon my denseness on this, but I'm, I'm trying to figure out what is the conflict here? Is it an actual nonprofit organization in conflict with the mutual aid essence? Emily Miller9:27 Yeah, I think that's a good way of putting it. So it's really about the whole core status of like, and I guess maybe that's not like the best sentence of like this, like the essence, like you were saying. So it's this essence of, we don't want to build a system that already exists that we know has not met our needs before. So a really wonderful, one of my favorite authors, Audre Lorde, said like the Masters tools will never dismantle the Masters house. I think that's a really good way of putting it of like if we just read create this system of how we get supplies to people how we get financial aid to people, we create this kind of dependence on like the mutual aid network. And just because unfortunately, the cost of insulin, the cost of supplies, all these things are so expensive. We are just by nature dealing with a higher amount of money than some other mutual aid initiatives are. So sometimes it's like, I've seen it in my local community fridges where if you have an extra $100, you can just like go to the store and buy extra gallons of milk, and I put it in the community fridge. But for diabetes supplies and insulin, it's so much more complicated, because you have prescriptions, you have doctors, you have insurance, you have benefits managers, you have the different companies that kind of run all this stuff. And so you come into all sorts of different ways of interacting with these systems. But if we don't want to emulate those systems by just becoming another pawn in it, and it's kind of trying to combat the idea of being a radical organization that's going to be able to support other people, but also not leaving anyone out. Because we've decided not to pursue c3 status, or a method through which we can't essentially like get funds in so we can then pay someone's copay off or someone's deductible things of that nature, it's just, it's a lot more thinking about the theory of it than I ever would have expected. But it's something where I feel really grateful to be able to bring that to the MAD team that at the end of the day, if we ever need to take a step back. And we need to think about like what we're going for, we have that kind of like theoretical and that like personal experience basis of it, where we can fall back on that, as opposed to just like, we have a bank account or something like that. So we were really trying to put the person at the center of it rather than the community. Rather than just like the organization. Stacey Simms 12:02 It's so complicated, as you said, with diabetes, because we, like my local group is a great example, we will help each other because we kind of know each other, and we trust each other even if we don't know someone Personally, I've seen them in the group for a couple of years. I know their child has diabetes, right? I know that this guy who lives in next town over is in between insurance and need some pods or whatever, you know, so we get the stuff that they need. It's different somehow, when, you know, we know there is a need, but I don't know if I should donate to this guy's Go Fund Me. Of course, I don't know if I should donate to this other thing. But then there have been so many groups have tried in the past, or have had the idea in the past, I should say of, well, let's just fundraise. And then where do we give it it is so complicated, because of all the prescriptions and I'm just really echoing what you said. But I guess what I'm leading to is the question of, are you then this is a big ask. So I I'm not expecting a big Yes. But are you then trying to use mutual aid diabetes, to spread the word of what needs to change in terms of legislation and insulin pricing and all that stuff? You've already mentioned some politics? Emily Miller13:03 Yeah, I think that's a great question. Because the existence of a group like Mutual Aid Diabetes by nature of just being a mutual aid group, it already shows that there's that gap in the system, like we were talking about. And so different people in the diabetes community, sometimes we call it like the diabetes, grassroots, essentially, you know, we know what skills we have. And so we can connect with each other, we can organize and we can talk about these different issues. Some people skill sets may just be better suited for mutual aid, some people might be a little bit better suited for like lobbying or things like that. But because we have these relationships to each other, that can inform how we use that information, to do things like lobbying, if we need to, or talking to elected officials, things of that nature. So it may not necessarily be like MAD’s wheelhouse, per se, to do some of that information. But just the fact that we exist as an organization brings awareness to that fact that the work that we do is because the way that insulin is priced in the way that supplies work is unsustainable for most people right now. And I think that's, it's a big, it's a big question of how do we link those things. But I think it is really important to talk about how the existence of something like MAD or different organizations and different organizations like the JDRF, or the ADA, or beyond type one, all these different things, what are their purposes within the diabetes community, because some of those organizations like JDRF and ADA and beyond type one, they talk about wanting to help people with getting assistance or making insulin affordable or making the best choices for each person's life, but by taking like insulin money and partnering with Big Pharma kind of defeats some of that purpose. So we're really here to kind of take that stance of like, we don't do these things, we don't take money we are buying for the community, we're trying to be inclusive of the whole community, all of these kinds of principles that we took a lot of time to think about. And just make sure that we are taking a stance that it can be done. And that as we kind of move along, you're helping people that we can meet the needs of the people who are essentially forgotten a lot of the time. And it breaks my heart that a lot of the time when we see these GoFundMe is, sometimes they have no money going to them, because people can't vet them. Whereas when I put up my GoFundMe literally a month ago to help crowd fund for health insurance costs, it got funded within six hours. And it's because I'm a vetted member of the community. But I take any of that surplus, I'm able to give that back to those people who have like $0 on their GoFundMe accounts, and I get DMS, from people all the time on Twitter of like, Hey, can you just boost this and it's the easiest thing to do. And by me boosting that, someone's able to get a little bit more visibility. And I think that's the great thing about Matt is that we have a little bit more visibility to bring that verification kind of in there. While also not being gatekeepers, we don't ask for proof of anything, but we do our best to make sure when we're meeting with people where we're trying to facilitate that need, we can talk to that person one on one and say like, what is the need here? How can we address this crisis? Are we doing crisis management? are we helping someone out to kind of feel more comfortable and asking for help these kinds of things. And the great thing about MAD, is that we just have so many wonderful people working in our community, you know, volunteers for MAD, a lot of them have so many different backgrounds, and so many different skills. So we have folks like medical social workers, people who work in ERs, but also people who just have a lot of experience in social media, or looking at like air tables or something like that. So we have all this different experience that we can kind of put together to make the most, I guess, facilitate as streamlined as possible, the aid that needs to be given to people. Stacey Simms 17:16 What kind of response Have you all received Since launching on social media late last year? Emily Miller17:21 Honestly, it's it's very surprising, I guess, for me, it's surprising because, you know, the communities that I come from, they tend to be really small and kind of insular. Sorry, I know where this is going. Yeah. And just to see the kind of outreach like, we had, I think 150 person limit on the zoom call that we needed, like for the intro session, and we maxed out and then so many people were like, how can I get this recording? How can we get this up there. And we're all behind the scenes, like typing to each other, like, have we finished the like closed captioning on this. So it's as accessible to as many people as possible, we just hit 1000 followers on Instagram the other day. And it just makes me really proud to see that something like mutual aid, which can sometimes be seen as this really radical sometimes divisive thing is being received and being really, you know, shouted out in the community. So it's really cool to see that. And just knowing that we've had a pretty amazing impact so far, just in terms of the people that we're reaching, and making sure that it is inclusive, and it is by the community, like I said earlier, because you know, it's Black History Month right now, I don't know when this is gonna go up here, being able to talk about the roots of mutual aid in black liberation, things of that nature. And to kind of connect with the community, in those respects, just shows that people are all while one, it can be a sometimes divisive thing. It's also growing a greater community. It's welcoming people in in a way that sometimes we...
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Sierra Sandison: The Story Behind #ShowMeYourPump (Classic Episode)
03/11/2021
Sierra Sandison: The Story Behind #ShowMeYourPump (Classic Episode)
She wore her insulin pump in the Miss America pageant back in 2014 and Sierra Sandison continues to advocate for people with diabetes today. In this Classic episode from June 2015, you'll hear from Sierra just as her book "Sugar Linings" is coming out. We'll catch up you on what Sierra is doing these days, her advocacy work and her accomplishments outside of the diabetes community. & accomplishments ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode Transcription Stacey Simms 0:00 This episode of Diabetes Connections is brought to you by Inside the Breakthrough a new history of science podcast full of Did you know stuff? Announcer 0:13 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:19 Welcome back to the show. I always so glad to have you here. We aim to educate and inspire about diabetes with an emphasis on people who use insulin. I'm your host, Stacey Simms, and this is a classic episode which means for bringing back one of our early interviews, and this is one of the earliest my fourth episode, which originally aired in June of 2015. Sierra Sandison is a big name in the diabetes community. You might remember her bursting onto our TVs and appearing all over social media after she won Miss Idaho and then walked across the stage and the Miss America pageant, wearing her insulin pump. She coined the hashtag Show me your pump, which continues to get lots of mentions today got millions and millions back then. I remember connecting with Sierra like it was yesterday, I was on vacation with my family in Isle of Palms, which is a beach near Charleston, South Carolina. We live in North Carolina, but believe it or not, the North Carolina beaches are generally further from us than the South Carolina ones. So we basically went to Iowa palms, I want to say almost every summer when the kids are growing up. And if you've read my book, that's where most of the bananas beach stories happen with Benny getting sand in his inset and all that stuff that I talked about. But we were leaving, we were just about to be on our way home. And I had reached out to Sierra, I don't remember who it was over Twitter or email, because she'd already been in the Miss America Pageant that had been the previous year. And I hadn't I didn't have the podcast in 2014. But she was talking about her upcoming book, Sugar Linings . And I thought this is a great chance to get her on the podcast. So I reached out and you know, had just launched I don't even think I was on Apple and the other apps yet I had launched the podcast on my blog for the first three or four weeks. And she reached back and said yes, and I gotta tell you, I was so excited. I remember, like the dork, I am high fiving with my husband, he was excited for me. And I gotta tell you, I'm still just as excited to connect with people and hear their stories. It's just a thrill every time somebody says yes, so I hope that never goes away. Thanks, y'all for letting me do this. I really appreciate it. And I'm gonna catch you up on what Sierra is doing today in just a moment. But first, Diabetes Connections is supported by insight, the breakthrough and new history of science podcast. It was created by SciMar, a group of Canadian researchers dedicated to changing the way we detect, treat and even reverse type two diabetes. The latest episode is all about how unpopular science can be very good science, Galileo probably comes to mind he was not exactly popular in his day. But there are a bunch of really interesting examples that they go through on this episode. Inside the break through you can find it anywhere you listen to podcasts. And remember, this podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. As I'm doing with these classic episodes, I reached back to the person you're talking to, to see if there's an update any information that they would like us to share and zero was kind enough to send me a message. This is five and a half years now after this interview you're about to hear and more than six years after the Miss America pageant, and she said that the main thing that she'd like to get across is that she has been trying to be much more outspoken about our advocacy efforts when it comes to focusing on insulin access and affordability in recent years, and I will link up another podcast She appeared on. She has been very outspoken about this and really trying to get information out there about better ways to advocate for lower prices and better access with insulin. She also says she is at Boise State studying mechanical engineering with minors in biomedical engineering and computer science. She was recognized as the number one student in her junior class. She's working on starting a 3d printing company and she is set to graduate next spring, Sierra, thank you for the update. You are absolutely remarkable. And obviously she's keeping quite busy. Here is Sierra Sandison from July of 2015. Thanks so much for joining me. Sierra Sandison 4:25 No problem. Stacey Simms 4:26 It's great to talk to you. You have a new book, a new blog, we have a lot to talk about. Have you always been in pageants since you were a little girl? Sierra Sandison 4:36 No, I was actually diabetes who got me in that got me into it. So at 18 I was diagnosed and throughout middle school in high school. I was bullied a lot I didn't really fit in. I didn't know what my identity was. I just like I just wanted to kind of disappear into the crowd. And this diabetes thing was another thing that the bullies could target and call it contagious and say it was my fault because of poor eating. How habits or lack of exercise, which weren't even like a part of my life. So it was ridiculous. But, um, I was just this. Just another thing on top of all the rest of the stuff that was making me different, that the bullies again, could target. So I get diabetes, my parents start pressuring me into training or into getting an insulin pump. And I kept refusing because like an insulin pump is a physical like external, very visible symbol of the fact that I have diabetes and Stacey Simms 5:28 How old were you when you were diagnosed? Sierra Sandison 5:31 So I would always like go to the bathroom to give myself shots and try to prick my finger. And, of course, that caused some problems, because I wasn't testing or bolusing when I was supposed to. Sorry, no. So Stacey Simms 5:45 I interrupted when you were talking about your parents wanted you to get a pump. And I asked about your age only because that's a difficult part of life anyway. I mean, you're transitioning, you're trying figure out what college is going to be like, or what's next. And here your parents think put this thing on you? Sierra Sandison 5:57 Yeah, exactly. And especially as an adolescent female, that struggles struggled with self-esteem, it was not something I wanted to put on my body. So then, a few months later, and by this time, I was either just about to graduate, or I'd already graduated. I can't remember. But I it was at the beginning of the summer, I heard about Nicole Johnson and the woman who directs the Miss Twin Falls pageant, which is my hometown, came up to me, and explained who she was and that her kids went to my school and she knew I had diabetes. And that she thought, I wouldn't want to know that Miss America. 1999 also had diabetes. And I thought that was so cool. So I go and Google Nicole Johnson. And here she is this beautiful woman. And she I found out she has an insulin pump. And up until that point, I thought that if I got an insulin pump, I would kind of disqualify me from being beautiful, because like, we are fed this definition of beauty, like we look at, we look at women on the front of magazines, and we compare, I compare myself to them. And I'm like, Well, my skin's not that smooth, and my hair isn't flawless like that. And this is not like this doesn't live up to that standard. And this doesn't live up to that standard. And none of them have an insulin pump. So therefore, that must not be beautiful. And now I see Nicole on Miss America, who has an insulin pump, and it's just like, super awesome. So I turned to my best friend that day at school. And while I was googling Nicole Johnson in class and I was like, Brittany, I am going to go to Miss America. And I'm going to wear an insulin pump. And she was like, I don't know what was going on in her head. She just looked at me blankly. But first of all, I didn't know what like how to use makeup or do my hair at all. I was totally, I was awful at everything I ever tried. So it was a struggle to find a talent. I'm not coordinated, like not athletic. Just like I just sucked to everything except for math and science, which didn't really help my popularity much. So I was just like, this dorky kind of nerdy person who always had a book and got made fun of so Britney is looking at me like, okay, like, whatever. But she was just like, what, like, the insulin pump is in like, the little machine your parents keep wanting to get and you're like, refusing to get it. And I was like, Yeah, she didn't. She didn't know where it came from. So then I go home and tell my parents, and they were like being the pageant like, Okay, if it's gonna get you an insulin pump, we'll get you an insert or like, we'll let you do the pageant and pay for this stuff. So Wow. So I compete in my first pageant. And guess what happened? Stacey Simms 8:37 You won. I lost. So you lost, but that was not what I expected. Sierra Sandison 8:42 Yeah, so I lost, which was discouraging, but I didn't give up yet. I go to this other little pageant. So I competed Emma's Twin Falls, which is my hometown, but there's also these other little pageants in the state that anyone from the entire state can compete in. So I went to this pageant that was open. That's what it's called when it's like, open to everyone. And there's four other girls were at Miss magic Valley. There's like 20 girls, for Miss Twin Falls, there's like 20 girls. And at that pageant, I won. So I was qualified to go to miss Idaho, and I was so excited. I was like, that was easy. Like, now I just have to win was Idaho, and I will go to Miss America. And so I show up at Miss Idaho, and there's 18 girls and the way Miss Idaho works is that Friday night, everyone competes. And then Saturday night, they read off the top 10 or top 11 and those girls compete again. So this year, they did a top 11 even though there's 18 girls, because I think they announced that they were going to do a top 11 before they know knew how many girls were competing. So Saturday night comes around and they read off the top 11 and I'm standing in the back with the bottom seven and it was so devastating because I at least if I didn't win, I at least wanted to make the top 11 and knock eliminated right away. So I got really sad and Brittany was like, Okay, how about this? How about you were your insulin pump wall like solving calculus problems, and inspire little kids that way? No, Brittany, I'm gonna wear my insulin pump on stage. But at this point, I kind of was giving up on the whole Miss America idea, which kind of made me like sad, but I realized that everyone in the audience would hopefully have I think everyone, everyone in general has an insecurity. Like I had my insulin pump and insecurity that makes them different that they sometimes want to hide and I really wanted to encourage them to not only like not hide it and tolerate it, but also to love it and celebrate it because it makes them unique. Stacey Simms 10:46 So how many Miss Idaho pageants did you enter before the one we all saw? Sierra Sandison 10:51 Yeah, so Okay, so I go home, and I compete for missed one falls. And this time, there's like, a gazillion girls, but I win it. And that was a little encouraging, because I just won like one of the hardest pageants in the state. So I, that's a, it's a whole, that pageant takes place, like a week after Miss Idaho. So I had an entire year until the next beside Whoa, I worked really hard, like, really, really hard. And I won't go into detail. But that's what made the difference between year one and year two, and I get to it, Stacey Simms 11:20 I understand you don't want to do it. What are your work on? Is it just your is it just getting in great physical shape? Is it more to it? Sierra Sandison 11:26 So that's part of it. But um, mostly it's really finding yourself and knowing what you believe. So when you go into interview, any question that's thrown at you, because you know yourself so well, like, you can answer it. And so I went to Okay, let's see, in December, Miss Miss Idaho, who was who won when I didn't make the top 11 challenged all of the local title holders to a new year's resolution. And I was about to go backpack through Europe for five months alone, which is a self discovery journey in itself. But I everyone was doing like, I'm going to work out more, and I'm going to eat less candy or something. And I was like, I'm not going to give up carbs. Exercising in Italy, like are you crazy. So I knew that we couldn't be fitness based. So I decided to read one book a month, which I've actually kept up to this day. And it's just taught me so much. But and then of course, we have the Europe thing. And like traveling in Europe alone for a long time. Just to traveling just teaches you a lot. So that's what I changed. So I get back to miss Idaho. And I really, I bow so I decided to wear my pump on stage. This is the first time I'll ever wear on stage because I hadn't more I will only wanted to work at Miss America where I could explain my story on TV into the media stations beforehand. And everyone would understand what the insulin pump was as well as my message. So I'm beside Whoa, there's a small audience. There's no type one diabetics watching. And I can't go out on stage and be like, Hey, everyone, like this is my insulin pump. And my message is for you to love the things that make you different. Okay, bye. Let's get on the show like that. So I get to miss Idaho in my pump, I put my pump on my pants. In that day, it just looked so much bigger than normal is like when I got a zit on my forehead and it looks like I'm so I'm trying to talk myself into wearing the pump and I'm, like freaking out. And finally I calmed down and I'm like, no one's gonna notice no one's gonna notice. So Stacey Simms 13:27 why did you Why did you wear it on stage? And what was it like, just before you walked out? If that wasn't the plan, what happened that you said, All right, I got to do it. Sierra Sandison 13:35 Um, so I didn't think I was ever going to go to Miss America because of the not making top 11 thing so but I really I got into pageants to where my pump on stage. And I wasn't going to give that up. Even though it wasn't the Miss America stage in front of millions of people on national television. I still wanted to know that I had the courage to do it. Um, so I walked out of the dressing room. And this little girl's staring at me and I met this in this like really self-conscious state like, no one look at my insulin pump, please. And the first thing she blurts out is like, hey, what is that she points to my insulin pump. And my heart sinks and I get really angry at the same time when I go back to the dressing room to kind of rip off the pump. And she's and she follows me and she explains that she's diabetic as well. And we get into the conversation about diabetes. And I end up asking her What kind of insulin pump she wears. And it ended up that she didn't have an insulin pump because she was really scared of what her friends would say. So at this point, I was like, I don't care what the judges think. I don't care what the audience thinks I'm gonna go where my insulin pump for this little girl and so that weekend I ended up winning and her mom came up to me and are her McCall is a little girl and her mom came up to me and Nicole was like, I'm getting an insulin pump. Oh my gosh. Oh my gosh. Oh my gosh. And then her mom after McCall ran off to tell some other friends how excited she was. Her mom came up to me crying because she's so excited that like she never thought her daughter would get an insulin pump agree to it. let alone be jumping up and down excited and confident about it. So that was probably the best. And then, of course, from there, I went to Miss America and made tough teen and yeah, yeah, there's Stacey Simms 15:10 a lot more to talk about. Yeah, I have to ask you, though, it's just so inspiring to hear. But when you walked on stage, and you've been in pageants for a couple of years, harder to wear the pump, or harder to wear that bikini, because Wow, did you look gorgeous? Oh, my gosh, that was so hard. Sierra Sandison 15:28 I actually have I so I, I work out a lot. And I like, I do CrossFit all the time. And I competed not now Geez, not now. But I competed in, like, power competitive powerlifting, or I guess that's redundant powerlifting competitions. So I was used to like being in like one piece, or just a sports bra and shorts. So that's like being in the bikini, scary for a lot of people. But it really wasn't that big of a deal for me until I put the pump on. So when did you realize that the pump Stacey Simms 15:59 and the pageant was becoming an actual movement, you know, that people were responding so strong. Sierra Sandison 16:06 Um, so I posted the picture online. And I kind of, I don't know, if some girl a lot of girls tried to start social media campaigns for their platform, and they just kind of flop because no one's really interested in them, if you know what I mean. So I was really scared that no one would like, like my message or because some people were telling me like, like fighting the beauty standards is stupid. And it's a stupid cause. But it's something I'm really passionate about. Because when I see someone like loving who they are, even though they don't look like a Victoria's Secret Angel, it really like encourages me to love myself. And so I really wanted to encourage that. But I also didn't think that anyone would take the time to take a selfie with their insulin pump. I don't think I would, I don't know. I just like, so I posted it. And then I went on with my day. And I got back to my phone. And it had like 1000s of likes, and 1000s of shares. And I went on Instagram, and people had been posting like crazy. And it was like it was incredible. So I think that like the same day or maybe the next day, I realized it was going crazy. It was awesome. Stacey Simms 17:15 Do you have any numbers? Or do you know how the hashtag Show me your pump? How far or wide that went? I mean, I know you were on the Today Show. And good morning, American NPR picked it up? Sierra Sandison 17:24 Yeah, I think so we, we did the math on the hits. And like number of viewers on all the TV shows and all the articles that were written. And we think my story reached about like five to 7 million people. And then as regard in regards to how many pictures were posted, you can't count those on Twitter, or Facebook. But on Instagram, there's almost 6000 today. Stacey Simms 17:50 So the social media campaign is going on in the time between Miss Idaho leading up to Miss America. Was it difficult to balance getting ready for the pageant in September of last year, when you were also...
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"We Want to Negotiate with the Immune System" - City of Hope & Defining a Cure for Diabetes
03/09/2021
"We Want to Negotiate with the Immune System" - City of Hope & Defining a Cure for Diabetes
The Wanek Family Project is an ambitious project to find new ways to treat, stop or prevent diabetes. The researchers who work there are also figuring out how to define what we all mean by cure. ) announced a six year plan to find a cure for type 1 back in 2017. This week, Stacey talks to Dr. Bart Roep about their three top areas of investigations and explains the thinking behind that "six year" announcement. In Innovations, rumors on a new smart watch with built in glucose monitoring - hope or hype? This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode Transcript Stacey Simms 0:00 Diabetes Connections is brought to you by Dario Health manage your blood glucose levels increase your possibilities by Gvoke Hypopen the first premixed auto injector for very low blood sugar and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:21 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:27 This week, an ambitious project to find new ways to treat stop or prevent diabetes is also figuring out how to define what we mean by cure, Dr. Bart Roep 0:37 the ultimate cure is stopped insulin injections, which is of course something I can just promise at this stage that I won't stop until we have a conference there. So that is the only promise I can make. But that is high bar. But we can also think of a cure to stop the disease process the immune response destroying beta cells, right? Because with that we we preserve a source of insulin. Stacey Simms 1:02 Dr. Bart Roep is the director of the Wanek family project to cure diabetes at City of Hope. He's going to give us a lot of information about their top three areas of investigations, a lot of which are going on right now some of which need your help In innovations, rumors about a new watch with built in glucose monitoring no needles, hope or hype? This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show. I am only so glad to have you along. I'm your host Stacey Simms, and we aim to educate and inspire about diabetes with a focus on people who use insulin. You know, my son lives with type one, my husband lives with type two, I do not have diabetes, but I have a background in broadcasting. And that's how you get the podcast. I was looking back, like so many of us are doing right now at march of 2020. And by this time, a lot of you had actually probably already begun staying at home stay at home orders. I believe it started in some states that early. But we had a lot going on in early March last year. And I was looking at the calendar to confirm this. But this really happened. I moved the first week of March, I spent one night in my new home. And then I went immediately to a JDRF conference the very next day, I had to pack my suitcase before I moved that I knew I would have my suitcase and my clothing in it for the conference that was in Wilmington, North Carolina. And that was March 6, seventh and eighth that we were all there at that very last JDRF conference locally in North Carolina that we all went to. I came back on Sunday, I moved a bunch of furniture around Well, my husband and my son moved the furniture, we hung some stuff on the walls on Monday, Tuesday, the 10th. One year ago to the day of this episode being released, I took Benny to his last scheduled physical therapy had knee surgery in 2019. And that was his last PT. And then a couple of days later, we flew my daughter home from college. And that was it. That was March 14 for us 2020 that we battened down the hatches. And for us all of this started. So here's to better days ahead. Look, I know it's still not easy, but I've seen many of your photos getting the vaccine. And I have to say I have a lot more hope than I did a couple of months ago for sure and even a couple of weeks ago. And hope is really the through line of this episode. And not just because the name of the organization has hope in it. You know, I mentioned City of Hope just a few weeks ago here on the show talking about their reverse vaccine trials. And then they reached out to me to come on the show and talk more about that and what else they're looking into. But they actually have changed their name recently. They're still on a mission to cure diabetes. We will talk about all of that in just a moment. But first Diabetes Connections is brought to you by Dario health and bottom line. Look you need a plan of action with diabetes. We have been lucky that Benny's endo has helped us with that and that he understands the plan has to change as Benny gets older you want that kind of support. So take your diabetes management to the next level with Dario health. There are published Studies demonstrate high impact results for active users like improved in range percentage within three months reduction of a one see within three months and a 58 decrease in occurrences of severe hypoglycemic events. Try Dario’s diabetes success plan and make a difference in your diabetes management go to my Dario .com forward slash diabetes dash connections for more proven results and for information about the plan. My guest this week is Dr. Bart Roep the director of the Wanek family project to cure diabetes at City of Hope City of Hope very recently changed its name to the Arthur Riggs diabetes and metabolism Research Institute. In honor of its longtime director and research pioneer Riggs scientific achievements include developing the technology that led to the first synthetic human insulin, a breakthrough that enabled mass production of insulin. I use the the words city of hope and Arthur Riggs diabetes Institute kind of interchangeably here, they had just changed the name, I think two weeks, maybe even one week before this interview, but many of you know that name, City of Hope, because in 2017, they made a big splash with an announcement about funding a project to cure type one. As you can imagine, a lot of eyebrows went up, including mine. And we talked about that in the interview, I am actually going to come back after the interview and talk a little bit more about the coverage of Dr. Roep refers to it and I just want to link it up and call your attention to some things. What's going on here is that they have started a six year program with the goal of finding a cure. And we're just past four years into it. Dr. Roep has been researching type 1 diabetes for more than 25 years, he is passionate about serving this community and ultimately finding a cure. Dr. Roep, thank you so much for spending some time with me. I'm really interested to learn more. Thanks for jumping on. Dr. Bart Roep 5:55 My pleasure. Stacey Simms 5:56 Let's just start with some of the basics here. If you don't mind, you're the project director for the one family project for type 1 diabetes. Can you tell me a little bit about what that is? Dr. Bart Roep 6:06 Yeah, absolutely. This program has been made possible by a wonderful gift from the Wanek family that allows us to do really novel, innovative out of the box, things that are all targeted to cure type one diabetes. So there's a very tight timeline, it's a six year program, we just entered year five, and we try to really cure diabetes in completely different ways. Because like you and all the stakeholders, I've been disappointed with the success of the current types of therapy. So it's all about curing type 1 diabetes, in close collaboration with one family and other corporate partners. And we're now at the harvest stage. So we now have a couple of programs that are really exciting and innovative, that are trying to really embrace the immune system and not suppress it and trying to cure diabetes. Stacey Simms I know that we could take any one of those programs, and probably spend more than an hour talking about each one of them. Can we kind of go through a little bit about each? Dr. Bart Roep We think that the immune system of a person with type 1 diabetes is the one that a cancer patient is craving. So we think it's the best immune system in the world. And but it comes with a price because even some of our own tissue may sometimes be attacked, like what happens in type 1 diabetes where the source of insulin, the beta cell is destroyed. But I think it's actually with good intentions, because I think that the immune system is looking for this trust issue. So we have come to appreciate that it is actually not a mistake of the immune system, it's actually probably a mistake of the beta cell, and the immune system is responding to it with good intentions. And that changes the entire paradigm, we believe that immunotherapy alone will not be enough, you must make islets happy again, because that's the provocation of the immune system. And maybe that alone could be enough to deter the immune response. And then the way that we try to do this is with a soft touch. So we want to negotiate with the immune system, we want to teach it how to do it right. Whereas all the therapies tested so far, have been trying to suppress the immune system. And as an immunologist, I think that is awful. And working in a cancer center, I know that this can cause cancers. And certainly during times of a Corona pandemic, the worst thing you can do is suppress the immune system. So what we want to do is do it very selectively and do do targeted, in a sense, it's kind of precision medicine, where we just want to treat the problem with type 1 diabetes and read the liver rest of the immune system in these and fight cancers and infection. That is what they all have in common. And that itself is already, you know, completely new and some people call us crazy. And the type of ways we're doing it, we have what we call an inverse vaccine. And we add inverse because normally people think of a vaccine that is meant to activate the immune system to fight virus or cancer. And we do the same, but we inactivate the immune system, but very selectively only to the vaccine that we get, which is a beta cell vaccine. So that's one. And the second one is that an all of this is actually coming from cancer therapy, what the breakthrough was that we genetically engineer the soldiers of the immune system, we give the cancer specific receptors, which then attack the cancers. And that has been a breakthrough in cancers. But what we want to do is exactly the opposite. We want to take the negotiators of the immune system, give them the new receptor, so they go to the islets and negotiate with the immune system. Try to do it right. That's what we call the Car T program. And the third one is is really become one of my favorites. And that is the very, very first therapy that's actually on the one hand trying to make beta cells happy again. And on the other hand, you know, redirect the immune system modulate the immune system. And that's done with one and the same product. It's an antibody that is already extremely successful in psoriasis and is now tested in, in arthritis graft versus host disease and transplantation or even in COVID. In extreme cases of COVID, it helps to moderate the immune response. And we have given that particular antibody a backpack with a growth factor that makes islets happy again. And the beauty of all of this is this backpack is only opens at the site of inflammation. So it the antibodies delivering the growth hormone for beta cells only where it's needed, namely, any inflamed islets. Now, when I say it's already started smiling, because it sounds almost too good to be true. And when that's the case, you probably are on the right track. So those are the three programs that we have. On top of that, we have a program from Dr. Riggs, the founder of our institute and major benefactor. And that has to do with dealing with complications of disease. So we have a molecule that we know is, is very effective in reversing and preventing neuropathy, one of the complications, diabetic complications, and we're trying to get that product also tested in in the diabetes arena to see whether we can prevent or reverse diabetic complications. But the other three are intervention studies. And what they also have in common is that they are also the first to really do personalized medicine in the sense that we've come to understand that every patient is different, the moms were right, we should have listened to them. And so we get that now. So we have drugs that we can give either 10 years before or after diagnosis before it's more difficult to find but after it's very easy to find, because that's where the majority of our stakeholders are. And we have drugs that we would probably reserve for the medical emergency of the diagnosis because they're a little bit more aggressive, a good come with some more risk. And we have products that we could give at any stage, like the antibody therapy, the bionic as I call it. So so that is also completely new. Now I'm really excited and proud of this program. And we were so eager to test this in the clinic and the one that is in the clinic is the vaccine, which is probably the weirdest of all Stacey Simms 12:27 I'm gonna stop you right there. I'm gonna stop you right there because I want to, I'm glad to hear you say that. Let's go through these three main programs, as you said, because the inverse vaccine is really how we got young the program this time around because I was talking about it a couple of weeks ago and realized I hadn't had anybody from City of Hope from the Arthur Riggs, diabetes and metabolism Research Institute, as it's now called on the show. So let's talk about where you are in the inverse vaccine. Because at that time you were looking for people to be in the trial, are you in trials? Okay, Dr. Bart Roep 12:59 we are we are still recruiting. But we need you know, for these types of trials, especially at this early stage, we need to be very picky, which is the worst thing you can do to a patient. But we need really need to find exactly the right patients. So we already did one trial, where I'm from the Netherlands as my accent probably is, is disclosing, and we did a trial there in patients that had, on average, about 12 to 15 years of type 1 diabetes just to see whether it was safe and feasible. And just to explain what we do, we takes immune cells out of the patient that we treated in the lab with vitamin D. That's a magic bullet. And then after a couple of days, we add the vaccine, which is a piece of proinsulin, the precursor of the hormone insulin, and then we inject it back into the patient under the skin. So those cells will directly swim to the pancreas and the islets and the draining lymph nodes and do their do their magic because it's truly magic. What what's happening there. And the strange thing is although I told these patients, the volunteers in the Netherlands not to have any expectations in terms of benefit. Three years later, they are all time low there HBA1C they are difficult age, they're in the mid 20s. Usually. And you know, there are an HBA1c of 6.2. And you know you as a mom will know that that is something or you count your blessings. So it may actually be that 10 years after diagnosis that could still be a benefit of just re educating the immune system. And what I love most about it is the legacy. We do two injections Prime members just like with COVID vaccinations, and then with time they get better. How awesome is that? Right? So it does look like this could be a disease modifying therapy. Now it's very early on. So that's why we now do a face to trial while actually Phase One B trial, I should call it, it's still to do with safety, but now in patients that still have plenty of beta cells, because that's the other novelty. And we now know that most patients still have beta cells, but certainly in the first five years after diagnosis, they are functional and make insulin. So that is the group of patients that we want to test now to be more certain that we can actually preserve that beta cell function and preserve a source of insulin in those patients. So Stacey Simms 15:28 yeah, in those patients that have the 6.2 A1C, as you had mentioned, I assume though, they're still using insulin for now. Right back to Dr. Roep answering that question in just a moment. But first Diabetes Connections is brought to you by Gvoke HypoPen. Almost everyone who takes insulin has experienced a low blood sugar and that can be scary. A very low blood sugar is really scary. That's where Gvoke Hypopen comes in. It's the very first auto injector to treat very low blood sugar Gvoke Hypopen is pre mixed and ready to go with no visible needle. That means it's easy to use in usability studies, 99% of people were able to give Gvoke correctly. I'm so glad to have something new, find out more, go to Diabetes, Connections comm and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma visit gvoke glucagon dot com slash risk. Now back to Dr. Roep answering my question. Were all those people who are doing so well on the studies still taking insulin. Dr. Bart Roep 16:34 They are. And that is why, you know, we also like to test it sooner. But how important is it to finally also address our attention to people with established disease, because all the other trials so far have always been limited to very newly diagnosed disease or just before diagnosis. And the vast majority of patients and you know, one of them, they have disease. And people always thought that there is nothing we can do. And it's game over. And that's wrong. Most patients have beta cells, and they may not function. But you know, the first thing to do is to avoid that they keep being attacked. And then with other therapies, making islets happy again, we may get them back into action. And I just believe that what we have done unintentionally, perhaps is that we did both, we stopped the immune response, we stopped the inflammation and maybe that itself with time is enough to have those beta cells come out of hibernation. So that is the working model that we have with that particular therapy. And we have to confirm that that that earlier observation, which is extremely exciting and a small group of patients will hold in California. Stacey Simms 17:46 Yeah, no, that is that's great. The second study that you mentioned, was this the bone marrow or was it you say it was used in cancer patients? Can you talk a little bit about that Dr. Bart Roep 17:55 both of these other therapies aren't directly taken as lessons from cancer therapy. You know, 10-15 years ago, we were treating cancer by resection surgery, chemotherapy, radiation. And nowadays, it's all immunotherapy. And one of the reasons why I joined city of hope is that I can learn from the cancer, the oncologists how to treat cancer in a personalized way. Because we also know now that even breast cancer is not one disease, it can be dozens of different flavors that require different therapies and sometimes only very mild. And that's what we want to do in type 1 diabetes as well. Except when we do that, we want to do the complete opposite. So because if you suppress the immune system, you get cancer and some cancer patients that are treated with immunotherapy to cure the cancer, they get type 1 diabetes, so it shows that you have to do it very sophisticatedly. That's what we try to do here. So in cancer, we engineer the soldiers of the immune system, what we call the effector T cells. And in type 1 diabetes, we do the cells that are normally regulating the...
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"Challenging and Humbling" - Raising Teens with Diabetes: Moira McCarthy (Classic Episode)
03/04/2021
"Challenging and Humbling" - Raising Teens with Diabetes: Moira McCarthy (Classic Episode)
Raising teens with diabetes can be very difficult, but there's a lot parents can do to make it less stressful. This week's guest has advice because she's been there. Moira McCarthy is the author of Raising Teens with Diabetes and she shares how a very tough time with her daughter, Lauren, taught her what these kids really need. The secret? You might think it's better technology or a certain diet or even discipline, but as Moira explains, it's compassion. Lauren is all grown up now, with a great job and a life far from home. She and Moira have a terrific relationship and she very generously shares her story to help others. This episode originally aired in July of 2015. ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode Transcription Stacey Simms 0:00 This episode of Diabetes Connections is brought to you by inside the breakthrough, a new history of science podcast full of Did you know stuff? Announcer 0:13 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:18 Welcome to a classic episode of Diabetes Connections as always glad to have you along, we aim to educate and inspire about type one by sharing stories of connection with a focus on people who use insulin. And with these classic episodes, I am bringing back interviews we did years ago, they are evergreen interviews that can still help people and you can really benefit from hearing these stories. But they are interviews that were done in 2015 and 2016, before the show had found all the listeners that it has now maybe that's you if you are newer, and with more than 350 episodes, you are sure to have missed a few. So this has been a fun way for me to go back and revisit some of the cool guests and great stories that we have shared. You know, it's funny to think about, but when I started the show, I was really concerned with Benny, my son becoming a quote, teen with diabetes. He was 10 when I launched in 2015. And you can hear that 10 year old voice at the end of every show when Benny reads my tagline. It is funny looking back because for us at least Middle School, you know ages 11 to 13 were actually much more difficult for diabetes stuff than the true teen years have been so far. As most of you know Ben, he was diagnosed right before he turned two. And as you'll hear in this episode, and in pretty much every episode from that first year, I'm terrified. I'm trying to figure out a way to make sure bad teen stuff doesn't happen to us and looking back it really makes me smile because what I was actually afraid of shows how much I misunderstood the teen years with type one my guest and now my dear friend Moira McCarthy has probably done more than anybody to educate me about this and she continues to do so to this day. A longtime listeners know more I became a frequent guest we even started an ask the demon segment we are due for another one of those pretty soon. If you're not familiar, Moira’s daughter Lauren was diagnosed with type one at age six. She's all grown up now living a very independent life with a great job in Washington DC and Moira , by the way lives in New England. They're not in the same town. They're hundreds of miles apart. But their path together with diabetes wasn't always smooth. Moira wrote one of the most widely read blog posts about diabetes parenting back in 2010. called freedom is their secret drug. I remember reading that boy. And just last month, she wrote a follow up to it. I will link them both up at the episode homepage at Diabetes connections.com. I am so grateful to Moira and her whole family really Lauren, their other daughter Leigh, Moira’s husband, Sean, for being open and honest about not just the good times with type one right not about the easy stuff not about when it was going well and about their community support and all the great things that they've done their accomplishments, being honest about their struggles more his interview from July of 2015 in just a moment for this is one of my first episodes. So I hope it sounds okay, I'm still doing radio stuff like introducing the guest a few times during the interview, you'll hear that but first Diabetes Connections is brought to you by insight the breakthrough a new history of science podcast, its historical wisdom, mixed with modern insight and insight. The breakthrough was created by SciMar. SciMar is a group of Canadian researchers dedicated to changing the way we detect treat and even reverse type two diabetes. 2021, as you know, is the 100 year anniversary of the discovery of insulin. It's arguably the biggest scientific discovery in Canadian history. This series examines that moment and many others through the lens of Canadian researchers trying to find what's next for the fight against diabetes. You can find inside the breakthrough wherever you find this podcast. And you should also know that Diabetes Connections is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Moira McCarthy, welcome to Diabetes Connections. I'm so glad you could join me. Moira McCarthy 4:16 Oh, it's great to be here. Stacey Simms 4:17 So much to talk about with you today. We met at a jdrf event in St. Louis last year. After which I read your book. You know, I don't have a team with diabetes Unknown Speaker 4:28 yet. Stacey Simms 4:29 It's kind of like looking into a time machine. And if you haven't seen raising teens with diabetes that's got the best cover. There's a teenage girl just rolling her eyes. As we've all seen. I have a teenage daughter but it's my son who has diabetes and he's 10. So more what do we have to look forward to? Moira McCarthy 4:48 Oh, it's just a snap. You know, agers all they want to do is please their parents. So I like to say we need the walk to cure adolescent. I think the good news Is that it really is temporary. When you're in it, it feels like it's not. But it really is a passing phase. And I think that when I hear like someone like you has read the book already, it makes me really happy. Because my hope is to be proactive and help people be proactive and kind of think ahead of the challenges you're gonna face and ways that you're going to try to work through them with your teenager. Stacey Simms 5:25 I think there are things that you can do, looking forward, to figure out maybe some things to do now when your kids are younger. But take us back and tell us a little bit if you don't mind about your story and your family's story with diabetes. How old was your daughter when she was diagnosed? Moira McCarthy 5:41 Sure, Lauren was diagnosed right at the start of kindergarten, right around actually at her sixth birthday. I knew nothing about type 1 diabetes and children before that. Once she was diagnosed, I realized that every single sign and symptom was right in front of my face, but she diagnosed Stacey Simms 5:59 on her birthday. Moira McCarthy 6:01 Well, she was diagnosed at her checkup, which was just shortly and wow. Which is very common, you know, yes, people go for checkups, then. So we were I say this with all the arrogance that that shouldn't be attached to it. We were the model patient family for a very long time. Lauren was extremely willing to just do what she had to do. I threw myself into becoming educated. She was actually the first young child in Massachusetts to go on an insulin pump in 1999, which seems crazy now because everybody can. We were progressive. And I really thought that I was the smarter mom who had it all figured out. And I would hear story about parents, with their teenagers and think, Well, I'm glad that's not us. And then I realized that I hadn't raised a teenager yet. And that no matter how hard you work, and how vigilant you are, and how wonderful your child is, the teen years can be extremely challenging and humbling. And so I learned a lot about, you know, the fact that you can't necessarily outsmart all of the challenges of diabetes all the time. Stacey Simms 7:17 And as a teenager with diabetes, let's talk a little bit about that. Because my understanding is it is not just the attitude, it is the physical as well, right? Moira McCarthy 7:26 There's a lot going on. It's just so unfair. I mean, think back to when you were a middle school, or an early high school kid, it's just such an awkward, uncomfortable time in your life without something like diabetes on top of it. And that's not just because of social reasons. That's because of hormonal reasons, too. And so you put diabetes on top of it, and you, you know, add to it, that it can make your blood sugar go crazy because of hormones. But you don't want to do what you have to do anyway. So who knows what it is in it. It's just a big old mess. It's a It's a challenging time, I really feel strongly that one of the reasons that I really support better technology is even if all we can do is just get this better technology to kids in their teen years. We're going to make life with diabetes so much better. I now that I've watched my daughter go through it, I totally get it. And I have so much respect for all teens, no matter how much they're struggling. I really do. That's great. And Stacey Simms 8:27 you and your daughter have been very open about your story. Do you mind if I asked you a little bit more about and I don't want to put it in terms of what went wrong. But what was difficult for her as a teenager? And how is she doing now? Oh, I Moira McCarthy 8:38 think it's fine to say what went wrong. Um, so what went wrong is is multifold first of all, I mentioned my arrogance, I really, really, really thought that I had it all figured out and that she had it all figured out. I trusted her so much at such a young age and put so much on her that I set her up to fail if that makes sense. Um, she actually came to me once and said you shouldn't trust me so much. And I think I just laughed at her. Stacey Simms 9:09 You'd be like just trust her to check at school or things like that Moira McCarthy 9:12 way. Um, you know, the old you yell into the next room, what's your blood sugar and they yell back a number. So what happened with Lauren is she she actually just wrote about this for a sweet life, I believe, where she explained when it all started. And she was at the pool at our beach club and I yelled across the pool, check your blood sugar and she went to get her meter out and just went huh. And waited a minute fiddled with it and yelled, you know, 118 or whatever, she yelled, okay, and I put it into my color coded Excel spreadsheet chart. And that was the beginning of it for her. She realized that she was trying to break free of diabetes. Ironically, she was feeling worse but in a in an adolescent mind that made sense to her. And I was I was letting her because I was burnt out. And it was pretty easy to just, you know, actually literally and metaphorically be in my lounge chair, letting her run the show because I was sick of it, when what she really needed at that time was me to at least check in on her. And by that I mean see things happen from beginning to end, at least once or twice a day instead of just trusting her to go off on her own and report in to me. And that's a funny thing, because she's a trustworthy child. She's honest, she's open. She was honest about everything in her life, except her diabetes and her blood sugar's and so under my nose, under my nose, and on my guard, my daughter went into real life true, not a joke. ICU DK. Wow. And that was when even her doctors were shocked. You know, that was when I knew I had to fix me so that I could help her get through this time. Stacey Simms 11:09 That's such a hard thing to hear knowing how on top of it, you thought you were in and she was, what happened? How did she do? Moira McCarthy 11:17 So at first, she dove back into doing everything great, and everything was fine. And then the struggles continued. And what I realized was, I needed to find a new acceptance or a new level of what was acceptable in her diabetes care at this point in her life. Was she scared? Stacey Simms 11:42 Was she upset? I mean, what was her reaction? Moira McCarthy 11:44 Well, you know, she said to me, once, someone asked me years later, I'll be honest, I went through anger, I, I wanted to shake her it's really, really frustrating. When you just want your child to feel good, and and, and do what they have to do. But what do I know, I'm not the person who was inside her head as a teen. So a couple years ago, someone said to me, ask Lauren, what the best tool is I can use with my teenager with diabetes, you know, is it is it a CGM, and I should watch everything? Is it a pump? Is it a meter? What is it? So we're driving the car and I asked her, and she thought about it for a while. And she said, I've got it, mom, I know what it is. It's compassion. And I'm like, but she said, you know, that whole time, I was beating myself up more than anyone could ever possibly beat me up. I felt like a failure. I couldn't face that I wasn't doing the right thing. I was letting myself down. I was worried about my health. So pointing any of that up to me was pointless. I already was doing that at a level you could never do. And so that really spoke to me about that makes you think about the struggles teens have that all that was going on in her head. I don't know how she was, you know, she was through all this. She was her student body president. She was homecoming court. She was star, the tennis team with all that going on physically and emotionally. It's pretty remarkable. Stacey Simms 13:21 And this is a, I guess I can say a bit of an overachieving family. She's now she's now in a good way. And she is now a college graduate has a great job doing very well. How did you get from DK a to that? Moira McCarthy 13:36 It was a process. I think that I had to realize and parents listening to this whose children are younger, I can't stress enough how you have to start doing this earlier is you have got to stop nagging them. Because when our voices fill their heads, there's no room for their own rational voice. And so it took me a really long time to stop nagging her and in fact, this morning, I kind of sort of wanted to nag her from 500 miles away to hurt work, but you just can't. And what happens when you stop that nagging is their own internal nag kicks in and they will listen to their own internal nag more than they will listen to ours. So I had to let go a little bit. But on the converse, I also had to make sure she was safe. But I had to have a new definition of safe while we went through this time. safe for us was not an A one C of 6.5 safe for us was not a log sheet with tons of checks in it every day safe for us was not now it would be the straight line across the CGM safe was knowing that she was never going to go into DK And all I had to do to make sure of that. And this will be confusing for parents of younger children, because they haven't experienced freedom in teens yet, all I had to do was check in and see her, do a blood check and put insulin into her body, at least one time a day. And if that's all you can manage for a period of time, they're going to be safe. And then you can work through the other things. And what worked for Lauren, she moved to a new endocrinologist, I loved our old endocrinology team, but she made a change. And her new under chronologist is very intuitive. And he treated her as a human being and not labs while working on the labs, if that makes sense. And he was the one who really cut back on what his expectations of her were. And by cutting back on the expectations, she was able to experience success and stop beating herself up as much. And then do more. Does that make sense? Stacey Simms 16:04 It makes perfect sense. And another piece of advice that I've tried to incorporate that I've heard you talk about is when your child comes home from school, and again, my son is 10. You know, we all want to say first, hey, how was your day? What's your blood sugar? Or, you know, how was your day? What do you do for lunch? And how did you bolus? And I have tried, Moira McCarthy 16:20 I don't really succeed, Stacey Simms 16:21 I have tried to stop doing that and say, how was your day? What were your friends like, and then either later on, ask them about it or say, hey, just give me your meter. And then you know, and we don't talk about it as much as we used to, I find that to be pretty helpful. Moira McCarthy 16:35 It really is I just got off the phone with a mom who reached out to me and asked if she could talk to me on the phone because she has a struggling teen, and she has an older child with diabetes. And she said that that action actually damaged their relationship to the point that she's still trying to rebuild it Stacey Simms 16:54 by just simply asking about it all the time. Moira McCarthy 16:56 All the time, the minute he walked in the door after school, it's such a natural thing for us to do as parents, but and I found when I first started working my way past that I was faking it. And that was obvious to my daughter because she said, you know, Mom, I know that you're asking exactly three questions about other things and just counting them until you ask about diabetes. So the answer is, and this sounds wacky, don't ask and what you said in there makes sense. You can look at their meter and get your answers, you know, and then whatever those answers are, you move on from there, don't go backwards, you know, so. But it's really hard because we care so much about this. And I think a way to try to work around it. And I talked about this in the team book is to remember that we're not raising an agency or a blood sugar, we're raising a human being. And their diabetes seems really important to us because it's such a responsibility medically and every other way. But the rest of who they are is just as important for us to nurture too. And if you can try to remember that it can help you pull that in. But it's what parent doesn't have that problem, you know, wanting to say what was your blood sugar. It's just what we do. So Stacey Simms 18:20 one of the things that you and I have talked about before is this remarkable advancement that's happened in technology. I my son has used a CGM for the last year and a half. He's had a pump since he was two and a half. But using a CGM has really changed the way I look at his blood sugar. And the way it appears throughout the day, and you mentioned a concert I want to talk about is the success is success, a flat line on the Dexcom. And that is something that I have to steal myself against going for because we all want to see those super steady, wonderful numbers. But that's just not how diabetes operates, at least not my kid. And he still does very well. Can you speak a little bit to this, I don't want to call it an obsession, but this it's almost this fear of letting kids kind of go in and out of range. Because at any moment, something terrible could happen when that's really not the case. Moira McCarthy 19:14 Yeah, so first of all, I want to premise that with if my daughter was newly diagnosed, and I was using these tools, I would absolutely fall into the category of wanting a straight line and worrying every time she went up and down. So I totally get it. Even though I started out this journey in a different time. And before those things, I can totally see how it could happen. But I have...
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DIY to FDA: Howard Look Explains the Tidepool Loop Submission
03/02/2021
DIY to FDA: Howard Look Explains the Tidepool Loop Submission
Right now, the very first diabetes technology with roots in the do-it-yourself community is in front of the FDA. Tidepool CEO Howard Look joins us to talk about what, if approved, will be a prescription mobile app controller: Tidepool Loop. We get details on the submission, including everything from how you’d actually get this app to whether you’ll be able to set your own blood sugar target ranges to which devices Loop could work with, international possibilities and much more. Howard mentioned Tidepool documents. In Tell Me Something Good a teenager with type 1 has a big idea about a Funko Pop character and some positive news for diabetes camps this summer. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode Transcription: Stacey Simms 0:00 Diabetes Connections is brought to you by Dario health. Manage your blood glucose levels increase your possibilities by Gvoke HypoPen the first premixed auto injector for very low blood sugar, and by Dexcom, take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:21 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:26 This week, the first Do It Yourself based diabetes tech goes to the FDA. We will get details on the submission of Tidepool Loop , including everything from how if approved, you'd actually get this app to whether you'd be able to set your own blood sugar target ranges, Howard Look 0:43 we did in our submission to the agency proposed flexible set point. We are in review right now. That is something new, and most companies before us have submitted with fixed set points or a limited set of set points. That is something that we are discussing with the agency we're not yet cleared, so I can't tell you how that discussion will go. Stacey Simms 1:05 That's Tidepool CEO Howard Look. He also answers questions about which devices this version of Loop could work with, international possibilities and a lot more. in Tell me something good a teenager with type one has a big idea about a Funko Pop character and some positive news for diabetes camps this summer. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show always so glad to have you along. We aim to educate and inspire by sharing stories of connection with a focus on people who use insulin. My son was diagnosed with Type One Diabetes just before he turned to my husband lives with type two diabetes, I have a background in broadcasting. And that is how you get the podcast. This week's subject is one that a lot of you are really excited about. I was going to say it's something that you've been waiting for. But I know a good portion of my listeners are part of the we are not waiting movement, and are using a DIY version of Loop already. For those who are not. What is Loop ? Well, that's a big question and I will direct you to a bunch of our past episodes. With the we are not waiting hashtag you can just go to Diabetes connections.com there's a search box on the upper right hand side of the website. And I have put all one word hashtag we are not waiting as a search term for any episode that deals with that with the DIY community. Of course, you can also Google Tidepool Loop , that sort of thing. But as simply as I can try to define it here, Loop is one of a couple of programs created by the community. This is not something that's commercially available, and it helps insulin pumps and continuous glucose monitors communicate. DIY Loop uses a Riley link another external piece of hardware to help with this. And it works with Omnipod and older Medtronic pumps. There are other programs openAPS Android APS, which work with older Medtronic pumps. That is a very quick and very light to say explanation of it. So I urge you if you're interested, although Howard always does terrific job of explaining more when I do talk to him here, I just want to make sure that you understand kind of all of the groundwork, this is not something that have popped up in the last couple of months. In fact, in late 2018 Tidepool , which was well known by then as a nonprofit, open source, a call it an information hub for people with diabetes, they announced they would shepherd DIY Loop through the FDA making it a lot easier for non diy yourself types to access what is really life changing technology. And now just over two years later, they've submitted and I don't know if an information hub is the best way to describe Tidepool , but it was started because there was no place at the time to view diabetes data in one place, I don't believe there really is still you can see data from your pump, your CGM, your meter all in one uploadable place and use interactive graphs and see trends and patterns in a way that was never available before. And I don't think it's available as robustly anywhere else. And then you can share with your healthcare team and invite other people and your healthcare providers to look at your charts and your graphs and your data. So that's how Tidepool s started. And if you want to hear the whole story about how they stepped up to take this new task on, again, I will link up these specific episodes at the homepage for this one at Diabetes connections.com. By the way, this is also a video interview, you can check that out at the Diabetes Connections YouTube channel, I'll put a link in the show notes there as well. I do want to give a quick disclosure here. I did a project for title in the spring of 2019. I was helping out with some research interviews in the community, that sort of thing. I bring it up because they paid me as a freelancer. And while they've never paid me for the podcast, I think it's important to always let you know about that kind of thing. By the way, I'm very good at community interviews and freelance projects like So reach out if you ever need a hand. Okay, Howard Look in just a moment. But first Diabetes Connections is brought to you by Gvoke Hypopen. And you know, almost everyone who takes insulin has experienced a low blood sugar and that can be scary. A very low blood sugar is really scary. And that's where Gvoke Hypopen comes in. Gvoke is the first auto injector to treat very low blood sugar. Gvoke hypo pen is pre mixed and ready to go. With no visible needle. That means it's easy to use, how easy is it, you pull off the red cap and push the yellow end onto bare skin and hold it for five seconds. That's it, find out more go to Diabetes connections.com and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma visit gvoke glucagon.com slash risk. My guest this week is co host Howard book here to talk about the very exciting submission of a Loop app to the US FDA, there is so much to talk about here. But Howard, let me just first welcome you to the show. Thanks for coming on. Howard Look 6:05 Hi, Stacey. It is so great to be here. I'm so excited to see you again. And so grateful for you having me on your show. Stacey Simms 6:12 Thank you. You know, it's funny to look back. And we have a lot to talk about. But I should say as we're getting started here, I have talked to you many times, but twice for the podcast and the first time was almost five years ago now. So as we go through this conversation, and as you're watching or listening, there's gonna be a lot of presumed knowledge, I think we're not going to try to explain everything. So I will link up the previous episodes where we talked about title and it's early days, and then the announcement a couple of years ago about this. But I think that even just a quick, cursory Google search will get you up to date before you listen to the interview. But there's a lot here. So Howard, thanks again. Let's dive right in. My Howard Look 6:52 pleasure. Thanks for having me. Stacey Simms 6:53 What did you all submit? Tell me about what actually went to the FDA. Howard Look 6:58 I have learned more about how FDA submissions go than I ever imagined my whole life. So we submitted what is known as a 510 k application, which is a big set of documents that says to the FDA, here's what we have built. And here's how we built it. And here is the work that we did to show clinical evidence to show software cybersecurity, what's called verification data, how we know that the software is working as intended. It describes what it looks like, how it works, what the requirements are. And all of that ended up being about a 2000 page submission, which sounds like a lot, but I've heard that other submissions are far far bigger. So we feel like it was a well crafted submission. And we are now in the thick of what is called FDA interactive review. So we sent in our submission on December 17. Turns out that was a snow day in Washington DC. So that was our thing. So our lawyers office used a courier to get a DVD ROM and deliver it to silver springs, Maryland. And what the FDA got was a bunch of documentation about Tidepool Stacey Simms 8:14 you submitted Tidepool Loop , this is an app, what is you know, what do you I guess we can fast forward what would the finished product be? Howard Look 8:22 So Tidepool Loop is a mobile application once it is cleared by the FDA and I have to be super clear it has not yet been cleared by the FDA It is currently under review. So it is not yet available. But once it is cleared Tidepool Loop will be a mobile application for iPhone. And people will be able to get it just like you get any other iPhone app by going to the App Store and downloading it, it will be prescription required. So you'll have to go to your endo or your doctor and say this is something I would like and get a prescription code. And then people will be able to download that app from the App Store. And what Tidepool Loop will do is it'll connect to insulin pumps and continuous glucose monitors. And it's what's called an automated insulin delivery device or some people call it other people call it closed loop or artificial pancreas. But basically it's software that automatically controls insulin delivery based on glucose values. And based on predicting how your body is going to react to insulin and carbohydrates. And it automatically uses an algorithm or math a fancy word for math to decide how much insulin you should get. So long winded answer Tidepool Loop is a mobile app that controls insulin delivery. Stacey Simms 9:40 Well, it's not long winded at all because I know there's a lot more to it than just that even But to be clear, when I think about this, and we'll go I would love to talk more about the history and DIY and and so much of that. It basically is the brains of the operation. So you have your pump, you have your CGM but you need that program. So you know, we have the controller queue we have horizon with Omnipod, if I'm getting that right used to be type zero, which we may see in other pumps, this is that Howard Look 10:07 that's exactly right. There's there's three pieces to an automated insulin delivery system. There's the insulin pump, which I think most people are familiar with, but it holds a reservoir of insulin. And sometimes it's something that you clip to your belt, like a Medtronic pump or a Tandem pump. And sometimes it's a self-contained unit, like an Omnipod that sticks right on your skin. So that's component number one is the insulin pump. component. Number two is the continuous glucose monitor. And the one that I think a lot of people are familiar with is the Dexcom G6, that's a super popular continuous glucose monitor or CGM, but there are others out there as well. And then the third piece is this controller piece in the middle. And what the controller does is it reads the data from the CGM. It also takes other information such as what your insulin to carb ratio is, what your insulin sensitivity factor is, knowledge about your basal rates. And it combines all that information using math and determines how much insulin you should be getting. And what's cool about it, people living with type one diabetes are used to that and used to doing the math on a napkin to figure out what their dose should be. But what's cool about it is that the software does it for you. And in the case of most automated insulin delivery systems, it does it automatically every five minutes, which is great, because that's a lot of math, and it's doing it for you. And it's also paying attention to how your body is reacting to what happened previously. And that's why it's called a closed loop system. It delivers insulin it it determines information. And then that brings that information back into the system to determine what it should do on the next iteration of the loop . Stacey Simms 11:49 And it really has been amazing. I mean, we use I mentioned control IQ. And I had no idea even though I had been told I could make you know, 300 decisions a day, one every five minutes, and then an additional one every hour. I remember the first morning I checked, and it kept Benny at like, let's say one 10th or 105. Great number I was so excited to see. And I thought oh, well, it didn't have to work very hard last night, because he was just cruising. And I went into the pump. Stacey Simms 12:12 And it had adjusted every five minutes. It's incredible. I don't know why I had, I hadn't thought about it that way that it would have to work just as hard right to keep him at that number. And it's not something that most people really have the inclination to sit there, you know, and do all day long. It was amazing to me just in a way. Howard, I gotta tell you, and you look at this as a parent of a child with type one, it kind of assuage my guilt of not being perfect all these years. Oh, yeah. Howard Look 12:40 Yeah, I know exactly what you mean. So our daughter, Katie, she's 21 now but she was diagnosed with type one when she was 11. And I totally I know exactly what you're talking about, as a parent, that feeling of why can I get this right? How can I do more? What Why is this so hard? And the answer is, because it's frickin hard. It is really hard work. And these systems are taking that really hard work and bottling a whole bunch of it up into these decisions that it can make every five minutes. And even they have to work hard. If you actually look at what the systems are doing. They're adjusting insulin delivery up or down every five minutes. And they're doing their best. And it's still really hard. And so yeah, I know exactly what you're talking about, and realizing what we as parents did getting up multiple times during the night giving correction doses trying to get it right. Like we all deserve a gold star for that because it is frickin hard work. You know, and everyone living with type, of course will start to because not just as parents, like people living with type one, doing this Stacey Simms 13:46 for decades, exactly with no breaks. So I have a lot of specific questions about title that my listeners have sent in. I'm cautious about getting too specific. I'm going to ask you, you may have to say can't answer that. Can you answer that? But before I do, I'd love to take a moment and talk about the significance of this being something that started as part of the DIY community. I was looking back and my podcast started in 2015. But we are not waiting and started really that that same came in 2013. But people working on things like this before that. Yeah. What's the significance? As you see it, of my understanding is this is the first kind of crowdsource DIY diabetes component. I'm not really sure what else to call it to go in front of the FDA. It seems like we should just kind of stop and mark that. Howard Look 14:31 I agree. There is so much to celebrate about the story. And what you just mentioned, is one of the huge components. So Tidepool Loop is based on an open source project that was known as Loop. I usually call it DIY Loop just to differentiate it, but it was just known as Loop. And there's a wonderful medium blog post by Nate Ratcliffe, who is the original author of Loop and he talks about how the works He did was built on top of the work that people did before him, people like Ben West and john Costik, who figured out how to control diabetes devices over wireless communication protocols. And then Pete Schwab who's the, his daughter is named Riley and Pete went and taught himself hardware design so that he could invent the Riley link, which made it possible to control at first Medtronic insulin pumps and then later Omni pod pumps remotely from an iPhone over Bluetooth. So it's this really incredible story of innovation of people figuring out how to make this happened. There's a whole other wonderful blog post that for your technically minded readers about the reverse engineering efforts that went into figuring out how to control the Omnipod, and how to add that functionality into Loop , which at the time only could control Medtronic pumps. And so it just goes on and on and on. There's a gentleman named Joe Moran, who was instrumental, he's been living with type one for decades, and he was instrumental to that effort. And so there's the open APS community and the Android APS community, Dana Lewis and Scott Liebrand, who I know you've met. And the story is that when the community really wants to do something, they just go figure it out, it's the most it to me the most incredible example of tenacity and innovation, and grit, and everyone working together for the greater good. And all of that transpired with people just doing their thing on their own, you know, nights and weekends, or, you know, none of them all of those names that I mentioned, it wasn't their day job to go do that. They did it because they wanted to help improve lives, their own lives, or the people they love living with with type 1 diabetes. And so what we did at Tidepool is we saw how popular Loop or DIY Loop was, my daughter started using it when she was still in high school, six years ago, and was getting incredible results, a bunch of other type coolers. Were using it. And we thought to ourselves, you know, what, we're in a really interesting position as a nonprofit, as an open source organization that has chosen to engage deeply with the FDA that we could take this open source project built by the we're not waiting community, and we could actually bring it into our regulatory quality system. And we could take it to the FDA and say, Hey, FDA, we actually would like to make this broadly available, we would like to put it in the App Store. And we started floating this idea with everyone with the we are not waiting community, with the device makers that would have to cooperate with the FDA, with the funding organizations like JDRF. And the Helmsley charitable trust. And across the board. Everybody thought it was a great idea. And so that was really, to me, it was just so heartwarming to know that everybody agreed, yes, this needs to happen. It can't these great systems that are helping our kids sleep through the night and helping us achieve, you know, really great, lower burden control of our diabetes, that we want to do our part to now pay it forward and help make it broadly available. So I was just I couldn't be more thankful and grateful to that entire community. So I often say we are standing on the shoulders of we're not waiting giants. Stacey Simms 18:30 That's great. All right. So...
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"Educational, Comforting & Really Fun" - The Story Behind Jerry the Bear (Classic Episode)
02/25/2021
"Educational, Comforting & Really Fun" - The Story Behind Jerry the Bear (Classic Episode)
You may know But this learning and companion toy for children with type 1 diabetes got his start as a college project. Ten students from Northwestern University entered the first every DiabetesMine Design Challenge back in 2009 and won the most creative design. A few of those students continued on and – as you’ll hear – started a new company called Sproutel. In addition to Jerry the Bear, This interview with Sproutel CEO Aaron Horowitz and Chief Creative Officer Hanna Chung first aired in November 2015. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode Transcription: Stacey Simms 0:00 This episode of Diabetes Connections is brought to you by Inside the Breakthrough, a new history of science podcast full of Did You Know stuff. Announcer 0:13 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:19 Welcome everybody. This is going to be a fun classic episode of the show. I'm really glad to have you along. It's been fun this year to take a look back at some of these interviews. These classic episodes, as you likely know by now are from the very first year or two of the podcast. Most of them are from the very first full year of lunch. And it's great to take a look back and revisit some of the cool people that we talked to a lot of you are newer to the show, or at least haven't been here for every single one of these. What are we 355 episodes. So I'm really happy to bring these classic episodes back out with an update. So hi, I'm your host, Stacey Simms, and my son was diagnosed with Type 1 14 years ago he is now 16 my husband lives with type two diabetes, I do not have diabetes, I have a background in broadcasting. That's how I came up with the podcast. And this episode is all about Jerry the bear a learning and companion toy for children with type 1 diabetes, you may be familiar with Jerry and I put some pictures in the Facebook group over Diabetes Connections of the group. But Jerry started out looking a little well a lot different and having different functionality. You may know Jerry has part of beyond type one. Now it's a program under them. They're helping with distribution and lots of other good stuff. But Jerry got his start as a college project. 10 students from Northwestern entered the very first diabetes mine design challenge back in 2009. And they won the most creative design back then a few of those students continued on and as you'll hear started a new company Sproutel that continues to this day. And in addition to Jerry, the bear Sproutel makes my special Aflac Duck for pediatric cancer and purple for finding calm. I will link both of those up at Diabetes connections.com you can get more information and check them out. They are they're adorable. They're really helping kids and families who need them. And as always, you know, episode homepage will have all the details. I did reach out to Aaron Horowitz. He is the CEO of Sproutel he's one of the people you'll hear from in this interview when I asked him for an update. And he says since this time, of course, they've added quite a few things. Most recently, they've added a continuous glucose monitor to Jerry. And they put in another software update that helps kids learn about washing their hands, and I guess washing Jerry's hands to about washing their hands more often that sort of thing. And he indicated that there is a big update coming later this year. So I will circle back with Aaron. And hopefully we'll do another interview and get some more info on Jerry. I will let Aaron explain much more about the history of the company in that classic interview in just a moment. But first, this episode of Diabetes Connections is brought to you by inside the breakthrough, a new history of science podcast. And the latest episode goes in a very interesting direction using the TV show friends to reveal how we really feel about scientists. I'm not sure that Ross is really the best example of this, but they they get it done. Marie Curie was an outsider in ways you never imagined sort of like Ross on the show. I really do love this podcast. It's historical wisdom mixed with modern insight with quite a few laughs along the way. Really great production value. Search for insight the breakthrough anywhere you listen to podcasts. And by the way, this podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. My guests in this classic interview are the CEO of sprout tell Aaron Horowitz. And Hannah Chung, who at the time was chief creative officer had a left Sproutel in the middle of 2020. I reached out to her I haven't heard back yet. So I will post an update in the show notes when I do hear from her and let you know where she is heading. Next is really fun to kind of go back in time and hear the story of Jerry, the team's appearance at the White House. And a lot more. Aaron and Hannah, welcome to Diabetes Connections. I am excited to talk to you both again. Aaron and Hannah: Absolutely. As are we, Stacey Simms 4:25 Hannah and Aaron. Let's start at the beginning. Let's start with the idea. How did you come up with the idea for a stuffed animal that kids could play with and learn from? Aaron Horowiz 4:35 So it actually started by talking to families of kids with type 1 diabetes. We we went into the homes of bunch of these families and as we were playing with kids, we observed that they were taking care of their teddy bears of their stuffed animals as if they also had diabetes. So they were pretending to prick the the paws of of their teddy bears pretending to give them insulin injections. Some kids were even actually taking little pieces of cardboard and paper and drawing insulin pumps that they would then staple to their bears first. So it that was kind of really this this lightbulb moment for us of wow, you know, these, these kids are mirroring everything that's that's going on in their lives that they don't yet have control of. So can we bring that play experience to life? And can we do it in a way that is educational, that is comforting. But most importantly, that's really fun. Stacey Simms 5:28 You know, it's funny, I hadn't thought about this in a long time, Aaron, but when you bring that up, my son had an Elmo doll, and Elmo from Sesame Street, and he was 23 months when he was diagnosed, and that Elmo got checked and got juice boxes, which made a mess, and got insets put on him. So it makes perfect sense that playing kind of helped these kids get through what they couldn't understand. Unknown Speaker 5:50 Absolutely. You know, like, as kids, we roleplay so many things, you know, right, we roleplay tea parties, we roleplay you know, dressing our animals up and making weddings for them. And for kids with with conditions like diabetes, like, like Benny did with Elmo to roleplay diabetes, Stacey Simms 6:07 when it was the idea of spread towel always to help medically and to help with play. And then you come up with the idea for type one, play? No, actually, Hannah Chung 6:16 the reason why I started spread tell was we really wanted to work on Jared the bear so and our mission was to really bring Jerry into the hands of all kids. And from there, we realized incorporating company allows erinite to work with this full time and you know, bringing awesome mentors, investors on board to help us feel the business. And from there just talking to a lot of families talking to a lot of kids, you have realized that the application of play into health can be so many different can help a lot of people not only for kids, but also for adults and the elderly. So from there, you know, working under the beret type 1 diabetes really allowed us to see the potential into coming into, you know, like applying this to help all kids to be healthy. And you know, and have a long term vision of helping all people to use play to help them to come healthy and well. So yeah, a little little Jared type 1 diabetes really allowed us to have the vision for scratch help. That's great. Okay. Stacey Simms 7:15 So Jerry has changed quite a bit. There is a new Jerry right now still loyal to that wonderful idea of learning through play. But tell me about the first Jerry, what, you know, what did Jerry look like? And what did he do Aaron? Unknown Speaker 7:30 Yeah, so well, I'll say that there are, quote unquote there two first Jerry's. There's the first Jerry the bear prototype. And then there's the first bear that we shipped. And I have a real soft spot in my heart for the first jar, the bare prototype. So I'll just touch on that for a second. Our first bear that we ever made, was when Hannah and I were still in school, we had no idea how to solder how to make a circuit boards, even even how to sew a bear. And so we were learning everything as we went along. And what we created I'm staring at it now in our office is like a two foot hard chested like behemoth of a bear eyes that we cut out of a Furby so that it blinked its head was attached to its body with with actually with metal nails. It was it was quite creepy looking. And we had made so many mistakes about our understanding of type 1 diabetes, because at that point, we didn't have kind of the intrinsic knowledge from the community. So for example, when we tested with our first our first user, Gerry's blood glucose level was only two digits. In fact, his screen was only two digits big. And actually, this, this little boy said, I would be hypoglycemic and go into the hospital. That was my, like, face total facepalm you know, we had missed the mark. But it taught us so so much about one, just the immense amount of knowledge that we had to learn so that we can then create something that actually had an impact. But it also showed us that despite the fact that Jerry was big and clunky and looked super scary, this this child was still really excited by the fact that there was a bear that also had diabetes. So that's, that's our technical for our first Jerry, Stacey Simms 9:08 I'm looking at the timeline you recently posted on Facebook, and I'll link this up at Diabetes connections.com if it's okay, is that the first Jerry the one that's really big and kind of light colored all the way on the left? It is He is creepy looking Hannah Chung 9:22 at that photo, because the girl is so cute, it makes the photo look really cute. But the bear itself is just take out the little kid part is kind of not that cute. Stacey Simms 9:32 But I it's fabulous to see where you're going. I mean, even then, you know, this is a toy. This is a really sweet idea. And then it's changed. It was um, it became a little smaller and a little bit more responsive, I guess is what I'm looking for at least it had three numbers for the blood glucose. Unknown Speaker 9:50 Absolutely. Yeah. So it got a lot more responsive. The bear that we ended up shipping. Really we went we had gone through 29 different iterations of product Type and the real difference between some of our early prototypes. And what we actually ended up creating and sending out to families was that the existence of a storyline. So the jury that that kind of existed in the world for the past few years, it has this curriculum with I say curriculum, but I mean animated storybooks. It's got 21 animated storybooks, where you train Jerry for the all star games, which are kind of like the Olympics. But the sports are things like climbing trees and diving with sharks. And we teach about diabetes skills, because each of these storybooks jargon meets up with a new friend like love with a monkey or George the vegetarian shark. And they teach Jerry about both a sport and a diabetes skill. So what we ended up sending out had this kind of all of these storybooks and the way that you unlocked the storybooks was that you had to care for Jerry correctly. So there's kind of this game mechanic that's built in where children are not only caring for Jerry, who, by the way, has a blood glucose level has fingers that you can prick to check, check that foods that you could swipe over his mouth and insulin injection spots. They're not only doing justice, what they did with their stuffed animals or with their Elmos, where they're mirroring all of their all of their care procedures. But they're doing it to unlock these the storybooks, which for them are kind of the carrot and the incentive at the end of doing this. But for us, that's that's really the way that we can convey some of the really complex things that that you need to learn. Stacey Simms 11:23 That's really interesting. So the new iteration of Jerry, you've expanded from just type one, as Hannah mentioned a few moments ago, you're really trying to work toward overall good health. Hannah, tell me what's new about Jerry this time? Yeah, it's Hannah Chung 11:38 a new Jerry. A couple of things. He's cuter, smarter, and with a more affordable price point. So the biggest thing that has changed is around this curriculum. So one, so the new Jerry, his base curriculum is around general health. So he touches social emotional development, nutrition, exercise, sleep and mindfulness. And from there families can customize Jerry to have a condition like type 1 diabetes, or food allergies, and yours were modular. And and it kind of allows families to kind of customize Jerry to mesh their own child. So you know, we can't so that we can build a world where everyone can have a Jerry but not all, Jerry is the same, which is really cool. And the way the new drivers interaction wise, Jerry had a belly device called a portal is kind of like a window to see what's going on in Jerry's world. So using this portal, you can kind of scan Jerry's brain and different body parts like the mouth and his stomach to see what is going on inside. Similar to the first year of the bear, you can still feed him, you can see how he's feeling. But if having the portal be detachable from the body, it kind of allows more physical movement for a child to interact with Jerry, which is really nice. And New Jersey also washable, which is a huge feedback that we've gotten from especially for educators, you know, if you want it to be used in a hospital setting, and washability is a big part was but we're wipeable with Clorox and things like that. Now this new Jerry is washing machine washable, which is really exciting. And Stacey Simms 13:09 yeah, that is because who would think of that, but but you absolutely if you have somebody who's using it in a in a healthcare setting in an office or a hospital, or you know that Elmo went in the washing machine a million times because they get kind of gross. Hannah Chung 13:21 Yeah. And then lastly, some of the looks of Jerry has changed. So the previous year was really cute. But we knew that Jerry could be the first Jerry was more geared towards kids who are younger, like five year olds, and now the New Jersey we want to help our age, the target age we're looking after is between three and four and nine. And even though that might be only a five years difference, it's a huge difference in the kids role and what kids can understand what kids are interested. So what we've done is we design a character that could be more appealing for all kids in that age range. So Jerry looks more expressive. And Jerry kind of have this longer arms like a monkey arm which I really love because he's more huggable. And so all in all, from design to interaction to the modular aspect of the curriculum has been the biggest part for us for ended up in designing the new dairy that we have. Stacey Simms 14:17 Aaron Talk to me a little bit about food allergies, there are so many health conditions, unfortunately that affect kids. Why? Why did you move to include allergies? Unknown Speaker 14:28 Yeah, when we look at different conditions that that kind of might be able to be addressed or to be helped out with with Jerry, we look at kind of two factors. One is the emotional implications and the other is the educational implications. And so food allergies very similar to type 1 diabetes, there's there can be unfortunately a lot of stigma for example, things like the peanut free table we've heard a lot of horror stories from families of isolation cause from eating at school. or children not understanding or really believing that other children have food allergies. So there's this whole kind of emotional and emotional coping component, which we really feel that Jerry kind of provides some of the biggest impact there just because of the comfort, because of this mirrored care that they have something else that is someone else. That's, that's just like that. And then the second is, is the educational component. And that really boils down, you know, for kids with food allergies, it's things like reading nutrition labels, and also very similar to diabetes and knowing how to articulate how you feel, and knowing when to to go and ask for ask an adult for help. This is really kind of universal across a lot of conditions. But you know, particularly in food allergies, there's every label or every piece of food that you put into your mouth, you're going to want to read the label, you know, see if it has whatever your allergen might be. And there is kind of this also really interesting correlation with, you know, an action that's tied in with mealtime, right. So for diabetes, you might be checking your glucose level and, and taking insulin for food allergies, you're doing it around mealtime, you're reading these nutrition labels, you're making sure that you're sitting in a place that's allergen free, you're making sure that the people around you don't have allergies, you you need to have washed your hands to make sure that you didn't touch anything. So there's all of these just kind of procedural things that we see a real alignment in the value that that we've seen Jerry provide for children with type 1 diabetes already. Stacey Simms 16:26 And so far, how has it been? I know you've just put it out there. And you've been part of the diabetes community for a few years, where you've been very well received, how have you been received in the allergy community? Unknown Speaker 16:37 So we've certainly had parents that are incredibly excited. I'll say this, we're kind of stole almost as funny term, but like making a name for ourselves in the food allergy community. We haven't yet gone to a conference dressed as teddy bears. Unknown Speaker 16:50 Yeah, Unknown Speaker 16:51 wait, what we did things like children with diabetes and ADHD, Stacey Simms 16:55 I should stop you and say, This is how I met Hannah and Aaron a few years back when they were dressed like Jerry, the bear at a conference, which was so much fun. And you definitely had to stop by and talk to them to find out what was going on. So yeah, you need to go to food allergy conference and do that. Unknown Speaker 17:11 Absolutely. That's kind of I think that that's how I think about kind of putting a stake in the ground. Moving into moving into new territory, we got to Don the bear suits, we got to go to a conference and maybe have a dance off with another mascot. Stacey Simms 17:25 But But have you have you had any feedback from parents of kids with food allergies yet? Unknown Speaker 17:29...
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"We Must Change This" - Advocating for Type 1 Diabetes and COVID Vaccinations
02/23/2021
"We Must Change This" - Advocating for Type 1 Diabetes and COVID Vaccinations
As the COVID vaccine roll out continues in the United States, many people with type 1 diabetes feel like they’re in danger of being left behind. Why is this happening and what can we do about it? Hear from long-time advocate Paul Madden. He's lived with type 1 for almost 60 years and he's been fighting for the rights of people with diabetes almost as long. Stacey & Paul talk about what the science says about COVID and all types of diabetes, why the priorities are different state to state and what we can all do to be better advocates. In our Innovations segment this week, and This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode Transcription: Stacey Simms 0:00 Diabetes Connections is brought to you by Dario Health, manage your blood glucose levels, increase your possibilities by Gvoke HypoPen the first premixed auto injector for very low blood sugar, and by Dexcom, take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:21 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:27 This week, as the COVID vaccine rollout continues here in the United States, many people with type 1 diabetes feel like they're in danger of being left behind. Why is this happening? And what can we do about Paul Madden 0:40 The science is very clear that type one is comparable to the risk of type two diabetes, if you should happen to get COVID. And I would say make sure your governor's office knows that make sure the Department of Health knows that because we've got to change this and the science is clearly there. Stacey Simms 1:01 That's longtime advocate Paul Madden, one of many leading the charge to get people with all types of diabetes higher up in the vaccine priority lists in every state. We'll talk about what's going on here. And action we can all take in our innovation segment this week, preventing type one and the tiniest patients, a new European studies looking at babies, and another new study this one about closed loops and kids. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show, I am always so glad to have you here. We aim to educate and inspire about diabetes by sharing stories of connection with a focus on people who use insulin, my son was diagnosed with type one more than 14 years ago, he just turned 16. Recently, my husband lives with type two diabetes, I don't have diabetes of any kind. But I have a background in broadcasting. And that is how you get the podcast. And longtime listeners who have heard me say that over and over again, know that over the years, this podcast has evolved, you know, where I used to focus only on type one. And then I got a lot better educated, frankly, about the strength of the diabetes community overall, and learned that a lot of people with gestational or type two or other types of diabetes, listen to the show because of the focus on insulin use and the technology and a lot of the research. And it's topics like this one that I'm focusing on this week that really drive home, how much we have in common and how we need all hands on deck the entire diabetes community when we're talking about something like the COVID vaccine, and getting priorities in order. So I'm thrilled that our focus has kind of widened out over the years. And it's thanks to a lot of better education by listeners, you know, like you talking to me about the needs of the community. And I think people like Paul Madden, and you'll hear more about him and his advocacy coming up, really drive home how much we all need to stick together. I also want to point out if you don't already know in our Facebook group, Diabetes Connections, the group, we have an ongoing discussion and some posts about what is happening state to state I've asked people to share from their state health department what is happening where they live, so that if you want to check in, and you're not exactly sure where to find your prioritization in whatever state you live in, you can pop into Diabetes Connections, the group on Facebook and find that information out pretty quickly. And if you know the right website and your state, please come in and add it. I have to tell you about something that happened in North Carolina recently, and this became a mainstream news item where I live in North Carolina. And this was a billboard that went up I will share this in the Facebook group. And it was a billboard that went up I believe in late January. And it said Governor Roy Cooper, our governor here does not consider type 1 diabetes an underlying health issue. Think about that. That's what it says on the Billboard in late January when I believe this billboard went up. Type 1 diabetes was not considered a priority for vaccination in North Carolina. That has since changed, but a lot of people garnered a lot of attention. This billboard went up in Johnston County, which is in the eastern part of the state. It's kind of Southeast Raleigh. I don't know if it's deep enough east to be called down east, as we say here. It's not quite toward the beach or that area. I believe there is an Ava Gardner Museum though, in Johnston County. That's kind of its claim to fame. As far as I know. Please don't correct me on that. You can you can correct me if you want on that. Send me your Johnston county emails, but really interesting stuff that somebody paid for it. The billboard company was contacted by the media outlet that did the story here was a Raleigh TV station and they said this isn't an anonymous person who bought the ad space. All I know, they said is what's in the message. But since that billboard went up, and I think it's still up, things have changed. People with type one and type two are now in what they're calling group four here adults at increased risk of severe illness. As of this taping, I'm taping this on February 19. We are on group three frontline essential workers so Hopefully we will get to people with diabetes and others with severe illness who are under the age of 65. And don't fit the other groups pretty soon. I don't know, maybe by mid to late March, but it is really a moving target. And I think that's important to keep in mind as you listen to this interview. And you think about this discussion. I talked to Paul this week. And as I am taping on the 19th, everything he said, is still in effect, but it could change by the time this episode is released, which is February 23. So if you're listening to this live on that date, I will post on social media if things change and of course, come visit the Facebook group to find out more of what's happening in your state. I'm optimistic that type one is going to move up as people get better educated and advocacy steps up across the country. But you know, it is a moving target like much of the vaccinations across this country. Alright, Paul Madden, and what you can do coming up in just a moment, but first Diabetes Connections is brought to you by Dario. Health. You know, one of the things that makes diabetes management difficult for us. I mean, that really annoys me and Benny, it's not really the big picture stuff. It's the little thing that's all the little tasks adding up. Are you sick of running strips, do you need some direction or encouragement going forward with your diabetes management with visibility into your trends help you on your wellness journey? The Dario diabetes success plan offers all of that and more. No more waiting in line at the pharmacy no more searching online for answers. No more wondering about how you're doing with your blood sugar levels, find out more go to my dario.com forward slash Diabetes Connections. My guest this week is probably one of the busiest people in the diabetes landscape that you will ever meet. He really has. I don't think he's done at all. But oh my gosh, Paul Madden has been on the frontline of advocacy for a very long time. He worked for 30 years at the Joslin Diabetes Center in Boston. He also worked at Johnson and Johnson with Animas, he has been part leadership roles at children with diabetes. He's been a part of the diabetes education and camping Association, the Association of diabetes educators had a large leadership role advocating specifically for people with type one at the American Diabetes Association. And he spoke last year, you might have seen him he was at the White House announcement on insulin pricing. Paul was diagnosed with type one when he was nine years old. And that was almost 60 years ago. And he talks a little bit about that in my interview with him. But I have seen Paul on social media advocating for the COVID vaccine prioritization for people with type one. So I reached out and I was really happy that he agreed and had time to join me. This is also a video interview, it's over on the YouTube channel. And I'll link that up in the show notes. If you would prefer to watch that the video is a little bit different. It is a little bit longer. And you will see exactly what we're referring to here right at the beginning. But you can certainly listen to it just as easily. You're not going to miss anything. If you just listen to my interview with Paul Madden. Paul, thank you so much for joining me. Paul Madden 8:01 Stacey . I've watched your podcasts and I know that you're getting right information out to us all and our diabetes world all 34 plus million of us here in the US. Yeah, Stacey Simms 8:11 well, I appreciate that. I'm grateful that it's generally an audio podcast with these video segments put in because as you can see, my production is sometimes a little wonky. We hit this at the exact right time for the sun to be setting on my window. So we've got some interesting stripes on me with the light. But we'll work around that. Yes. You're here because you have so much great information about type one advocacy, specifically right now around the COVID vaccine and prioritization. Let's just take a step back. Can you talk a little bit about the situation? We are in the middle to late February at the moment where things stand? I mean, the US has a bunch of different policies where things stand for people with type one right Paul Madden 8:49 now. Yeah, I'll give you a couple of scenarios of where it stands right now, Stacey . And regrettably, we can't define it well for every state without going into this state COVID Medical policy, but generally the CDC put out their announcements, and they said something to the effect. I won't quote them, but I'll paraphrase. But they did recognize that type two diabetes was a higher risk and a priority for earlier vaccinations. And that is very correct. Unfortunately, their wording for type one was far more nebulous, far less clear. And they said that for type one insulin dependent diabetes, we suspect it could be a higher risk. Now the challenge is, as you know, Stacey , we have approximately 1.6 million people in the US with active type 1 diabetes of all ages, you older guys and gals and folks like me, and very young little babies, little kids and all the way in between the type two population. It's over 32 million and so very quickly within the first few months of COVID, after February, March, they saw the data from the hospitals from the treatment centers, the ICU that said, Wow, type two diabetes is about a 3.3 times greater risk of serious complications than the citizen without diabetes. So they correctly log that in there, unfortunately, and we're saddened by the fact and I and others, it's it's never alone. It's always a group of us. But I reached out to the ADA, the JDRF, the the diabetes patient advocacy coalition, the leadership and diabetes group, and I children with diabetes, a group that you and I know, well. And 18 groups finally signed on when we sent a letter to Dr. Redfield, who was in charge of CDC. And we said, Please, sir, there's some new data, some new science that started to come out beautiful science in November, December, and a new article just came out in January to say, type one? Absolutely. If you give COVID Is it the same high risk level and one study imply there could be a little bit higher risk than type two? So six states have made the change? And have said, Absolutely, let's do it. Some states haven't defined type one and type two in their state policy, because remember, the CDC allowed the states to determine who gets the vaccinations on their state schedules, I got involved very much in Massachusetts, because unfortunately, they did distinguish, and they still have not changed the Priority Ranking for type one. And we're very discouraged by that. very discouraged. So the type one population, our kids get no priority. If you're over 65, we can now start to get it just because of our age tomorrow. But that's not enough. We've got to get all people with type 1 diabetes at the same Priority Ranking for vaccinations. So that's what we dug in, we're trying to get, we have a sense that we're going to get a meeting with the COVID Committee, the medical leaders here in Massachusetts, I know others are doing the same. So we only again, know of six states that have put type one in with type two. But as I'm talking to more and more advocates throughout our country, I'm learning that some again, like I said earlier don't distinguish. And they allow type one and type two to be together both as a high priority ranking. But we don't think that's more than about 20 to 25% of our states. And we don't have a definite number on that. So we got to keep pushing. Stacey Simms 12:38 I'm in North Carolina, as you know, and they did not first but they did slide type one up. And you know, a question that came up early on. And again, we want it to all be the same we want, again, we want that type one higher, but who would check and what a burden to kind of put on these health care workers who are giving vaccinations? I mean, I get it, if you're going up to kids, if you're a 12 year old, they're gonna say type two. But if you're 40, is someone going to be standing there saying, Well, what type do you have? What's your a one? See, show me your insulin pump? You know, it just seemed to put a burden on folks. Paul Madden 13:12 Yeah, we certainly did with this. You know, we haven't done this, as you know, since the Spanish Flu 1918. But none of us were around, you know, maybe 30 people around, but they can't really relay the story very well. They were three years old. Stacey Simms 13:27 And I hate to use a little dark humor. But people with type 1 diabetes were not included. They hadn't even figured out insulin at the last time Paul Madden 13:34 we checked I was pretty insulin era. Exactly, exactly. Right. So we've got to keep pushing and you know it Stacey advocacy. And for everyone who's participating in this advocacy is about getting the science clear. Having good backing, making sure you have some spokespersons from healthcare who are specialists in diabetes. I am a psychologist. I'm a diabetes educator. I know my diabetes, my personal diabetes of 59 plus years, and I've been an educator in it for 47 years, so I know it well. But I also realized that I often need to make sure I've got several physicians and other healthcare providers lined up and that we have done. Several people that have said, Yes, the Joslin clinic came roaring through and said, What do you need from us? We've got it. And they just sent me another article today that I can submit to the governor's office and the COVID Committee. And that's the type of things that we have to do. There's not enough people that get paid to be advocates. And I want to stress that and I wish that there were and I know the diabetes organizations wish they they had so much money that they could easily hire more people to do these things. So it really relies on us. The volunteers also offered to put the pieces together again working though, and supporting those diabetes health care providers. Stacey Simms 15:00 So if someone isn't an individual, they're not affiliated with a formal advocacy group, and they're in a state like Massachusetts or another state where they haven't put the type one priority higher. What do you do? What do you call? Stacey Simms 15:18 Right back to Paul answering that question. But first Diabetes Connections is brought to you by Gvoke Hypopen. And you know, almost everybody who takes insulin has experienced a low blood sugar and that can be scary. A very low blood sugar is really scary. And that's what Gvoke Hypopen comes in. It's the first auto injector to treat very low blood sugar Gvoke Hypopen is pre mixed and ready to go. With no visible needle. That means it's easy to use in usability studies, 99% of people were able to give Gvoke correctly, I'm so glad to have something new, find out more go to Diabetes connections.com and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma. Visit gvokeglucagon.com slash risk. Now back to Paul Madden answering my question of what are we supposed to do? Who do you call? Paul Madden 16:08 Yeah, I think most people bombard their diabetes specialist team phone number and email which was by the young people especially. And typically, the diabetes professionals in our states know who the advocates are. And if they don't, and they're seeing this, I want to encourage you to find out who your your statewide volunteer advocates are, and know the people from JDRF, from ADA, from the diabetes, DPAC group, patient advocacy coalition. They're quite a remarkable group. This is to pay staff and a bunch of wonderful volunteers, some very top senior business leaders who have been in diabetes for a long time, including the nonprofit world in diabetes, and they volunteered their time for this. So your medical professional should know. And then we the people living with diabetes should get to know these advocates also, because there will be other issues. This is a big one right now. But there's other big issues, the whole reimbursement, the medical switching, all of these things that make no sense whatsoever. Stacey Simms 17:14 Yeah. so in this situation, though, you would think it's better to call the people that are already working on it, rather than your congressman or your health department, or things like that? Paul Madden 17:24 Well, no, I think rather to coordinate with the people that are already working on it. But no, Stacey , you bring up a great point here, you and I and all of us have to be wonderful employers. And by that I mean, our state representatives, our federal senators and representatives, they work for us whether or not you voted for them, they are in office and taxpayer dollars, pay their salaries and benefits packages. And again, we've got to be a cooperative employee, employer, but we they do work for us. And we have to make sure they understand that this is a priority for 1.6 million people in the United States that live with diabetes. Absolutely. Yeah. Stacey Simms 18:08 I don't know if you can answer this. But I'm curious. Do you think that when the CDC put out those guidelines, and when states like Massachusetts aren't listening to advocates like yourself? I think not taking type 1 seriously? Do they maybe not understand it? They don't they think it's just kids? What do you think's going on? Paul Madden 18:26 Yeah, so maybe it's not a full understanding, but that the medical experts on the COVID...
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"Ultimately, it's not going to hold me back" - Phillies General Manager Sam Fuld (Classic Episode)
02/18/2021
"Ultimately, it's not going to hold me back" - Phillies General Manager Sam Fuld (Classic Episode)
The Legend of Sam Fuld was born during his days in the minor leagues and when he played for the Oakland A's and in Tampa Bay. It involved his wild dives and seeming willingness to do whatever it took to make the play. Earlier this year, Fuld became the General Manager of the Philadelphia Phillies. Sam Fuld was diagnosed with type 1 at age ten and first spoke to Stacey in 2016. In this classic episode he shares his story, what he did as a player to manage his blood sugar, and This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode Transcription: Stacey Simms 0:00 This episode of Diabetes Connections is brought to you by inside the breakthrough. A new history of science podcast full of Did you know stuff like does snake oil actually contain snakes? If you're intrigued by science get excited about the process of discovery and one of the best stories that your next dinner party inside the breakthrough is the show for you. Announcer 0:25 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:31 Welcome to a classic episode of the show where we take a look back at stories of connection that you may have missed the first time around. I'm your host, Stacey Simms, and of course, the emphasis is still on educating and inspiring people with diabetes with a focus on those who use insulin. This time around, you're going to hear from the legendary Major League Baseball player Sam Fuld diagnosed with type one at age 10. I first spoke to Sam in 2016, when he was playing with the Oakland A's. He retired as a player in 2017. And he was just recently named the general manager of the Philadelphia Phillies. If you're not familiar with Sam fold, I say legendary because and you'll hear us talk about this. There was a time when he was known for these incredible plays in the outfield where he would just throw his body into walls, he would make these dives that to me, the mom looked painful. And I linked up one of the many videos made by fans, you can check that out in Diabetes Connections, the group on Facebook, but Sam is a lot more than the legend. He also has a terrific program, a coaching program for kids with type one. I will let him tell you more about that. But I will link up the information in the show notes. And I will talk about that after the interview as well. Because you know of course in 2021, it looks a little bit different. Please remember this podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. This episode of Diabetes Connections is supported by inside the breakthrough a new history of science podcast, the 2021 is the 100th anniversary as most of you know of the discovery of insulin. It is arguably the biggest scientific discovery in Canadian history. This series examines that moment and many others through the lens of Canadian researchers trying to find what's next for the fight against diabetes. The host, Dan Riskin, has a great following you may know him from many years of hosting primetime Discovery Channel shows. He's also really funny. He's appeared on a lot of late night shows and he wrote the book, Mother Nature is trying to kill you. We've got a link to inside the breakthrough over at Diabetes connections.com. And of course you can find it wherever you listen to podcasts. When I'm doing these classic episodes, I have reaching back to the people featured in them for a comment and update, you know, to let them know that we're bringing the interviews back out and see if there's anything they can add and Sam Fuld was kind enough to correspond with me. And I did send to him congratulations on the amazing new job as General Manager for the Phillies. And I asked him if he could give us a diabetes update. So here's what he said, quote, “Hey, Stacy, I am really enjoying my new role. I am trying to learn and achieve as much as possible as we enter spring training. I'm surrounded by a lot of experienced co workers and have been leaning on them extensively throughout the past few weeks. Time is precious these days. So I'm really grateful for my Dexcom G6. Next up is a transition away from insulin pens, and toward an insulin pump. I'm really excited about experimenting with one of the hybrid closed loop systems.” So that's the update from Sam, as you'll hear the interview, he was not using an insulin pump. And of course I told him he can just jump in Diabetes Connections, the Facebook group and learn more from all of you. So let's see if he pops up. All right, here's my interview from February 2016. All right, my guest today is Sam fold. He was diagnosed type 1 diabetes at age 10. after he'd already made up his mind to play professional baseball, as you likely know, he got there playing first with the Cubs than at Tampa Bay. And now with the Oakland A's. It was while in Tampa that Sam started his weekend camp for kids with diabetes, teaching them as he's learned that diabetes shouldn't hold you back. As a mom of a kid who plays baseball has type 1 diabetes. I'm really excited to talk to you, Sam fold. Welcome to Diabetes Connections. Sam Fuld 4:31 Hey, thanks for having me. Stacey Simms 4:32 Can we start kind of by going back before you were even diagnosed? You were really into baseball is what I've read. Is that right? Sam Fuld 4:41 Oh, yeah, yeah, baseball was. I really can't remember a time where I didn't love baseball. I was I was probably four or five years old when I realized like, oh, man, this is my favorite sport. I mean, I played every sport imaginable grown up but there was something about baseball that I just really loved and I think it was better Added to then the other sports was okay, the other ones. But for some reason I was better in baseball I think that probably helped contribute to my passion for but I think it worked hand in hand. I was good at it because I loved it. And I loved it even more because I was good at. Stacey Simms 5:14 So not too many years later than you found out you had type 1 diabetes, what happened? Do you remember your diagnosis? Sam Fuld 5:21 vaguely. I mean, luckily, it wasn't anything too scary. I mean, it was essentially an accumulation of a couple months of symptoms. And there's no type 1 diabetes in my family at all. So my parents didn't really know what was going on. They just something was going on. And, you know, I showed all the classic symptoms of going to the bathroom all the time and being thirsty and losing weight. You know, I was 10 years old and lost 10 pounds over the summer. So my parents didn't take them too long to figure out something was wrong. So I think I remember going into the doctor and you know, it was about a 480, which obviously is pretty high, but certainly not really high. When you when you compare it to some of the other numbers that diagnosed diabetics get. So you know, it wasn't anything too scary, luckily, and we all knew right away what what the deal was, Stacey Simms 6:09 what was the deal? I mean, how did it change your life? And this was, I'll call it a generation ago, let's say your diagnosis, right, like 20 years ago. So how did it change your life? This wasn't a time when people were automatically going on an insulin pump and getting a Dexcom Sam Fuld 6:23 No, not at all. No, I don't even think pumps were on the market. At that point. It was certainly not an option. And yeah, I just remember well, so I was at an age where I could be pretty independent with it. So I remember my parents helped me out with with my injections for the first few months after being diagnosed. And but shortly thereafter, I was really independent. And I you know, I had the old old school syringe and the vials and my meter. You know, I think it probably was like a 25 second countdown. So which is an eternity nowadays, but it wasn't too bad. I mean, it wasn't like reading the color of a urine sample. Right? Stacey Simms 6:59 Nobody was sharpening the needles. Sam Fuld 7:02 Yeah, so somewhere in between, like ancient diabetes and current diabetes treatment. I was so naive. I didn't know what I had. No, you know, I think my uncle had a cat with diabetes. And that was about all I knew about. So I really, in some ways, was naive and a little ignorant. And I just thought, okay, God, I figured it was kind of like having asthma. Like I had asthma at the time. And I was like, Okay, I guess it's another thing to deal with. And I guess that naivete kind of helped me in some ways. Stacey Simms 7:29 Yeah. Well, it's good to not know what you can't do. Did you ever think you couldn't play baseball? Sam Fuld 7:34 No, no, I was lucky. I mean, the the medical staff was really positive and supportive, and my family and friends are really supportive. So it really never crossed my mind. It would hold me back, I think I was lucky to be surrounded by some really supportive people. And I, you know, I think it wasn't until months or years after I was diagnosed, that I heard this stigma that maybe diabetes could hold you back, or that that was even a thing. So I think, again, I was lucky that the first thing that popped in my mind was okay, nothing's gonna change, you're gonna have to see me a big pain in the butt potentially. But, you know, ultimately, it's not gonna hold me back. Stacey Simms 8:11 And you mentioned you had asthma. Do you don't have Sam Fuld 8:13 to do that? No, I was kind of like an exercise induced as it was. I sort of grew out of it. My dad is as one goes. Yeah, I don't know. It's, um, I would put the time I was like, using an inhaler occasionally. But no, luckily, that's a non issue at this point. Stacey Simms 8:28 Yeah, I was gonna say that's a lot to deal with. But you've mentioned that you had some great inspiration shortly after your diagnosis, because there have been other professional ballplayers with type one. Sam Fuld 8:40 Yeah, there have not too many. But you know, I think in back then, when I was diagnosed, it wasn't like, you could just hop online and Google like type one diabetic baseball players, you know, kind of word of mouth. So I know about rod Santos, the Chicago Cubs. Great. And then I had a family friend, at the time was a pitching coach for the Boston Red Sox. And he knew of Bill gullickson, who was a longtime Major League pitcher. And so when I was about type one himself, and when I was about 12, you know, year and a half after being diagnosed, my family friends set up this sort of meeting on the field at Fenway Park, when when Bill was in town pitching for the Tigers, and I got to meet him and you know, it was like a two minute conversation and but that really kind of went a long way I was I knew he existed, but to really meet meet him face to face, it kind of gave me an extra bit of motivation. Stacey Simms 9:29 I think that's so important. Because as you said, no one sat you down a diagnosis and said, well, son, your dreams of baseball are done. This is not going to happen for you. And a lot of kids in in my son's generation, don't worry about that either. They're not really told anymore. This is going to hold you back. But being you know, kind of hearing that and then seeing and meeting somebody who's done that is a big difference is that one of the reasons I would assume that talking to Bill gullickson really cemented it for you why you now talk to these kids. Sam Fuld 10:00 No doubt, no doubt. I mean, I remember that moment. You know, it was 22 years ago, 2122 years ago, but I remember it like it was yesterday. And I definitely impacts the way I, you know, I go out of my way to meet other kids with type one. So I think yeah, that that moment was so invigorating to me, and I'll never forget it. Part of the inspiration for the camp that I do and and all the interaction I have with with young type ones. Stacey Simms 10:26 Well, let's talk about the camp in a little bit. But I do want to focus on I mean, the way you play baseball, that crazy first season in 2011, when you had all of those, the jumping and the diving and the YouTube videos, Was that fun for you? Instead of crazy here, because I'd also like to talk to your mom, I was worried about you getting hurt. so silly. Unknown Speaker 10:50 That like, Sam Fuld 10:52 I can't speak for my mom. She was probably willing to deal with like the whiplash that I got on all those guys. I think she got a pretty good kick out of that whole run to know I loved it. It was an amazing, amazing part of my career in life. Really, it was, it happens so quickly, you know, I was kind of, I just come over to the rays from the Cubs in a trade. And, you know, I had a little bit of big time with the cubs. But this was like my first opportunity that first time making the team out of spring training, you know, but even at that point on opening day, I was like, essentially, the last man on the team, you know, it's like the fifth outfielder and didn't envision really playing a whole lot. I was just kind of thrilled to be on the team. And Manny Ramirez retired. And that kind of thrust me into like the starting role. And I just kind of ran with it. And the next few weeks, were just like this crazy, wild ride. And I guess I'm lucky I had the perspective, I guess I know enough perspective to try to enjoy the moment as crazy as it was. There were moments I was able to like, sit back and just go oh my gosh, life is crazy right now. But this is fine. Stacey Simms 11:59 It's great. And I if as you listen, if you haven't heard about this, I will link up the legend of Sam fold and some of the videos that came out of that season. A lot of fun. But tell me about your your routine, if you could, I had a lot of questions from people who wanted to know as a professional athlete, how do you do it with type 1 diabetes? How do you take care of yourself? You don't if you don't mind getting a little personal here to kind of share maybe a game day routine or how you take care of at all? Sure. Sam Fuld 12:27 Well, I mean, I'm sort of an old school diabetic I use my Lantus and novolog pens, and I don't use a CGM, nor pump obviously. And that's just worked for me. I've been I've been using these pins last 10 years or so. And I really, I find that they work well for me. So I do my lantis at night, once once a night, I wish I could draw up like a typical game day for you unfortunately, like they're not none of them are typical there every day is different. And, you know, we play seven o'clock games, we play one o'clock games, we play three o'clock games, you know, we play in New York on East Coast time we play in Oakland, obviously, we play you know, we're in different time zones throughout the year. So really, if, if there's a typical day, it's that I'm changing something. And you know, we're exposed to different foods in the clubhouse, you know, we get fed really well in a clubhouse, but there aren't exactly nutrition, nutritional labels on everything that we eat, you know, it's a lot of like, catered food that that's brought in, and you just, it's a lot of it is a guessing game. So that being said, You know, I do try my best to, you know, maintain some sort of routine and as best as I can. So if it's a night game, which I'd say about two out of three games that we play or night games, I'll just try to have like a, you know, oatmeal is like my go to in the morning. I love oatmeal, maybe a little fruit in the morning. And then sort of snack is needed until lunchtime. And I'll I love going to like a turkey sandwich with some fruit, maybe some vegetables and hummus, something like that pregame and then play at seven and then we eat after. I mean, we haven't crazy when you're diabetic or not. We are on a crazy schedule. You know, your launch is like five o'clock and your dinner is 11 o'clock at night. Stacey Simms 14:20 My son would think that sounds fantastic. You definitely have dinner at lunch or dinner at five and then dinner lunch again. Yeah, Sam Fuld 14:28 that's great. Until the next day, you have to wake up at like seven eight o'clock game and then you're back to like normal life. So yes. Stacey Simms 14:35 Do you just test a lot more? Do you check a lot more? Sam Fuld 14:37 Yeah, I tend to I mean yeah, whenever Yeah, I think I mean I test a lot regardless, but I particularly during games and yeah, just during the season, I'm checking quite a bit. So you know, typical game, I'll probably check at least three times during the game. I think. On average, I'm up about eight checks per day. Stacey Simms 14:56 And this is totally nosy so tell me to buzz off is the no pump thing. Comfort thing, or is it also like your, you know, your diving and jumping and running around? Sam Fuld 15:03 Yeah, I think it's a little of both. You know, I experimented one a couple years ago in an offseason and shoot every kid I talked to loves them, you know, and I hear nothing but great things about them. So I thought I'd give it a shot. I owed it to myself to try it. And I, I definitely found some benefit to it. But I also just didn't like that foreign body attached to me. And I was worried that if I were to wear one during a game, then it would become a bit of a hazard. So yeah, and I think if I were struggling more with my treatment, currently, I would be more compelled to change, but I just don't really comfortable the way. Stacey Simms 15:39 One of the things I wanted to ask you about. And this is kind of silly, but it's from my son's perspective, I wanted to ask you during his baseball games, and he's 11 years old, we can see because he wears a CGM, that when he's at bat, or when there's a big play, you can watch the adrenaline spike. It's pretty wild. And I'm curious if you have dealt with that kind of thing. And how you deal with perhaps post game highs that are adrenaline highs? Sam Fuld 16:08 Yeah. Oh, it's really one of the bigger challenges. I mean, especially I, I've had a lot of games where you know, I won't, I won't start, and I'll be on the bench. And all of a sudden, in the eighth inning, I'm called upon a pinch hit. And like, so you go from kind of very relaxed mindset, you know, you try to anticipate these changes being made. So your adrenaline gets going around the sixth seventh inning, you try to get your body loose in case you are called upon. And then but then you just can't predict that sort of that huge adrenaline spike and that blood sugar spike, when you're called upon to pinch it or even pinch Ron, or whatever it may be. And so I mean, I'll be right where I want to be in the low mid one hundreds. And then I got like, 20 minutes later, I mean, 300. And it's unbelievable. Can you just can't it's really tough to control. But yeah, you did you do the best you can. And it's one of those things that just in some ways, it's difficult to combat. And but I'd rather be a little on the high side and on the low side, obviously. So and then, you know, after the games are crazy, because then you get that letdown, essentially, you know, I'll eat an entire meal, a big meal after a game and not even need any novolog just because I've got all that adrenaline wearing off. And then you get those crashes. And you need carbs. Just to keep you aboveboard. Stacey Simms 17:28 Yeah, it's been an interesting learning experience for us over the years of baseball as he's gone from Little kid playing to bigger kid playing...
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From Discouraged to Inspired: Meet Chronic Superhuman Eric Dutcher
02/16/2021
From Discouraged to Inspired: Meet Chronic Superhuman Eric Dutcher
Eric Dutcher is one of the super athletes of the diabetes world. He even calls himself But he spent years years thinking diabetes meant that he shouldn't be active, and he admits he got pretty low. Eric shares how he found his way to a brighter - and incredibly active - future. He's now a big part of the and is training for an Ironman race later this year. More in this episode on ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go!
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Spare a Rose and a Game Show! (Classic Episode)
02/11/2021
Spare a Rose and a Game Show! (Classic Episode)
Spare a Rose has become an annual tradition in the diabetes community. The idea is simple: this Valentine's Day buy eleven roses, rather than the traditional dozen, and donate the money you save to the campaign. The cost of just that one rose will provide a child with diabetes in an under-resourced country enough insulin for one month. This interview is from our first Spare a Rose episode back in 2016. Stacey talks to advocates Scott Johnson, Kerri Sparling & Bennet Dunlap. In addition to learning more about he life-saving program, they also play our very first game show. Find out more and ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode transcription (untouched by human hands - our computer doesn't speak diabetes very well - check back for the edited/cleaned up transcript!) Stacey Simms 0:00 This episode of Diabetes Connections is brought to you by insight the breakthrough surprising stories from the history of science. This new podcast connects old stories to what modern day medical researchers are facing. Announcer 0:18 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:23 Hello and welcome to one of our classic episodes. I am so glad to have you here I am your host, Stacey Simms. And as always, we aim to educate and inspire about diabetes with a focus on people who use insulin. I want to talk to you about sphere of Rhodes. And if you think you know what that is all about, stay tuned anyway, because I guarantee nobody else has done a podcast like this on this issue all about sphere arose. So what is it? Well, each February since 2013, the diabetes online community all over the world has supported the charity life for a child through the spare aros save a child campaign. It is a very simple idea. Valentine's Day is coming up in the campaign goes all throughout February. But the thinking is that you should send 11 rather than 12 roses to the person that you love on Valentine's Day. And then the money that you saved from that one rose goes to spare a rose, and that one rose will provide a child with diabetes in an under resourced country enough insulin for one month. The math here is pretty simple. One rows equals one month, there are links in the show notes that on the homepage, I'll put them out on social as well with more information and easy ways to donate. I set mine up every year to just kind of keep going every month. It's very simple. And I was really excited way back when for my first spare arose episode on this podcast because I got to talk to three terrific advocates who helped create and nurture the program and continue to do so today. So I'm really excited to bring you this classic episode from 2016, which also features my very first game show on this podcast. We'll get to that in just a moment. But first, this episode of Diabetes Connections is brought to you by inside the breakthrough a new history of science podcasts full of digital stuff. The most recent episode is all about the electric car. I got a sneak peek, sneak Listen, I love this show. It is all about how bad timing killed the electric car. But it's also explaining rural versus urban, and women entering the workforce and there's so much going on in the background of the story. Inside the breakthrough was created by Simon Simon is a group of Canadian researchers dedicated to changing the way we detect treat and even reverse type two diabetes. You can find inside the breakthrough and this latest episode at Diabetes connections.com or just search for it anywhere you listen to podcasts. My guests this week are three people familiar to many of you. They always step up when they're needed. And I'm lucky to call them my friends now. Scott Johnson works at my sugar. He was there back when we spoke for this interview. But I knew him best at the time from his blog, Scott's diabetes. Bennett Dunlap has two children with type one, they're adults now. And since we first spoke, he has been diagnosed with Type two. He's been very open about that. He's been writing about that. And we last spoke when we were on a panel in gosh in November, December just of last year, and he was continuing to share his story. Carrie Sparling was writing six until me every weekday at the time of this interview, she did close the book on that blog not too long ago, she has just published a book of poetry. It's called range bolus. And I will have a link in the show notes I just found out about that I haven't had a chance to order my copy myself. But I will very excited for carry on that. And another note spare arose itself has changed a little bit since this interview, you'll hear us talk about Johnson and Johnson's involved made a few other points that may have changed, but the mission and the need have not changed. So if you can help, please do so. And remember, this podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Then it Carrie and Scott, welcome to Diabetes Connections. Unknown Speaker 4:09 Oh, thank you, Stacey. It's Unknown Speaker 4:10 a pleasure to be here. Unknown Speaker 4:12 Thanks for having us. Unknown Speaker 4:13 Yeah, it's a thrill. Thanks, Stacey Simms 4:14 Kerry. Let's start with you. Tell me a little bit about how spear rose came about. Kerri Sparling 4:19 I'm sure and I'll probably screw it up just a little tiny bit. So guys feel free to jump in and correct me at any point. But I'm spare Rose was born out of as you had mentioned, the Partnering for diabetes change group kind of got together and tried to come up with an idea and it's not exactly it's actually not at all sponsored by the IDF but their charity life for a child benefits from this program. So what it is like you said, you know, instead of buying the roses, you you really what it actually is, let me just back up a little bit is it's a way for those of us who have access to a lot to acknowledge that privilege and to kind of pop that bubble of privilege and help touch the lives of people outside of that access point. And you know, give a little of what we have two other people living with diabetes. We know what it's like. to miss an insulin injection or under calculate an insulin dose, we know what high blood sugars feel like the idea of having a child suffer from that and potentially die from that is too heartbreaking to even comprehend. So if there's a little bit that we can do to help move, the mission forward of gaining access to insulin for other people around the world, you know, in developing countries, we were like, yeah, this is something we we can't not do this is this is a must. So we all got together and decided that we could try to rally the community around this cause I think it's been very successful. Because again, it's not like one person or one group or one. I don't know, any driving force that that that runs this, it's everybody touched by diabetes has the chance to reach in and impact lives in a really, really big way. It's kind of hard to say no to that. Stacey Simms 5:45 And Scott was part of the idea here to keep it kind of simple. I mean, you buy food, you can still buy flowers on Valentine's Day, but maybe donate the value of just maybe one or two roses, what that would cost. Scott Johnson 5:55 Yeah, absolutely. I mean, simplicity is, is really important. When it comes to ideas like this, and I think ideas need to be simple in order for them to take off and and for a lot of people to get behind them and support because they have to be simple to understand for those of us who are really involved in the in the community and involved in diabetes, we understand and get it. But we're we want this message to reach many people who are not necessarily touched by diabetes or not, not that involved in the community. We wanted to reach a much wider audience. And so it needs to be a very simple idea, both simple to a to explain, simple to understand and simple to do as well. Stacey Simms 6:46 And Bennett, you're very involved in policy, do you think people are still surprised to find that, while we're talking about a specific kind of access here in the US, perhaps that in other parts of the world, the access is is much more limited? Bennet Dunlap 6:58 You know, I think that maybe they are and maybe it's a good thing that we remind them, but I don't think that anybody is surprised that insulin is hard to get and economies that are struggling. So like Carrie said, this is an opportunity for everybody to join in. Nobody owns sparrows, the community own sparrows, you own sparrows, because you're doing this podcast, God owns it, because he writes about it, whoever jumps on board is a part owner of what we're doing here. And like Scott says, It's super easy to do. So what do you do you go to spare arose.org all one word sparrows. And you click on the big rows at the top of that page. And it's going to take you to a donation page. And you can give through PayPal stupid easy, there's two dropdowns, you can give a one time gift you can give a rose. So you know Valentine's Day, a full bouquet of fancy dancy roses is maybe 60 bucks. So you take thinking give 11 take five bucks, give it the sparrows that's going to help a child stay alive for a month. Or maybe you give monthly, maybe you give a rose every month, that's a full dozen roses over the course of a year, five bucks a month. I mean, I got a Starbucks coffee staring at me. And you know, five bucks a month is way less than what I spend on coffee. And that will keep a child alive for a year. So you go to sparrows.org. either click on the give button or just click on that giant rose on the top there. Click the drop downs for whatever type of donation you want to make. Make the payment through PayPal, boom, you're done. You've helped save a life. Stacey Simms 8:35 And Carrie has been described as stupid easy, which I think is great. Bennett it really sounds like it's simple. Okay, you know, what has this come to mean to you this is I believe this is the fourth year that you will have tried to get the word out and supported this. Are you seeing change through it? Do you feel like this is something that will continue? Oh, God, I Kerri Sparling 8:55 will I mean, I I really hope it's something that will continue. But I think that change happens twofold. The first is the most important change, which is every every little donation goes and changes and improves and potentially saves the life of a child that's that is the Paramount thing, the thing that should always be on the forefront. But secondarily, people in the community are becoming more and more aware of what we truly have access to and how lucky we are as a group of people. I mean, here we are sitting on this Skype call. We're using our computers we texted before using our emails, whatever super privileged, very lucky, I don't worry about where my next injection of insulin is coming from, but to think about Hey, what's it like to worry about that what's it like to not have access to something I'm so accustomed to, to recognize how lucky we are, helps people step outside of themselves, help the community kind of evolve and grow in a way that really benefits everybody, not just the people in the community but the people outside of the community who are part of the community, but are benefiting from this campaign. We never meet these people whose lives that were changing but but knowing that we're able to, to make that change. That's really powerful stuff. And I'm hoping that out through this campaign, it helps kind of bring to bloom other ideas from different groups about how to acknowledge what we have and spread the wealth. Stacey Simms 10:10 Well, that's a really good point. Because Scott, as the point was made here, you know, this is not an idea that has a little tm after it, there's not really a copyright. Right, there isn't a tm, I didn't make that up. Just to just to check. So when we say no one owns this, and the community owns this, Scott, how have you seen that taken off, because it does look like the diabetes community really has embraced it? Scott Johnson 10:34 Well, I think it's important that that that it is embraced by everybody. And this is an idea that, that needs to be owned and embraced by as many people as possible. If If, if there's someone that tries to own something like this, it just doesn't go as far. So the whole thing is just get it out in, in, owned by owned by everybody owned by anyone that can talk about it or share it, you own it, you You are a part of it in and everybody involved with it, as is so thankful that you are doing what you're doing for it. So yeah. Stacey Simms 11:12 I'm curious to you know, the diabetes online community is a very big community. But it also seems very small in that we all kind of get to know each other. And you know, you really are many people are very accessible on Twitter, or you can you can reach them. I guess what I'm getting to and Carrie, let me read this to you is, how did you all come up with this? We talked about the you Partnering for diabetes change? What is that? Did you all sit around a table and Scott had his diet coke? And you guys kind of talk about it that way? How did it come about? Kerri Sparling 11:43 The sparrows idea itself? Unknown Speaker 11:45 Yes, Kerri Sparling 11:46 well, this, the Partnering for diabetes change coalition is a group of people who were brought together with assistance from Johnson and Johnson. So we do have to give them a huge nod because they, they don't own this project. But they've helped in part to shepherd it. And I'm really proud of of the investment that they've made in bringing the advocates together so that we could incubate this kind of idea, the idea itself, and Jeff is going to hate me for saying this. But the idea was actually born from Jeff Hitchcock, who runs the children with diabetes group. And it was just latched on to immediately by everybody in the room because it didn't serve an agenda. It didn't serve anybody's ego. It wasn't this Oh, look at me sort of thing. It was more this is actual social media for social good. This is a powerful thing. And everybody just took it and, and ran with it. So it was it was an awesome meeting. And what's come of that is, like everyone has mentioned already, nobody owns it. So this one idea, which was incubated by the group has been grabbed by the community of people living with diabetes, and beyond the diabetes community, into the patient community, and to people who work for diabetes companies. I mean, there's a lot of potential for this idea to spread. And it's a good idea to spread. Stacey Simms 12:51 And better give me your perspective, because as I mentioned, you work a lot now, with policy and that's been your interest for a while, put this in perspective for us in terms of how much easier perhaps something like spare Rose is to create change and to have an actual impact, as opposed to trying to make change happen legislatively? Well, Bennet Dunlap 13:12 you know, I'll tell you, I think that spirit Rose is the foundation of other change. I will tell you flat out that when we did the strip safely campaign, I went took the notes of how we created sparrows and just replayed them with different branding. So, you know, you mentioned that the community is large, but it feels small, I think the community is large, but it feels intimate. And what we can do with that intimacy is ask each other to help. And sparrows, to me is the very foundation of helping because like Carrie said, You're helping people you don't know you'll never see them. If you're super lucky, maybe you'll be at an event where IDF shows some of the art that these kids make, you know, and it's typical refrigerator art. In it, you see a little bit of an image of a kid that realizes they're staying alive because they're getting this magic Insulet from somebody. And that to me is the key is that we do things for others. We do things for people that will never see and then eventually we can do things for policy. But you know, if we're not living for others, we're never going to get to the policy stuff. So to me sparrows is foundational in everything we do. It's all about other people and taking the gifts you have and sharing them. Scott Johnson 14:30 It's you know, there's it's important to know that any anything helps, right like, this has been a really wonderful idea. We've seen it go a great ways so far. But if if all you can do is is one rows, that's a tremendous help before you can do a spread if you can't do one rows, but you can help spread the message. That's also a tremendous help like don't undervalue whatever You can do to help this cause it all, it all goes a very long way. Bennet Dunlap 15:05 You know? Absolutely, it's about doing what you can. And when we track what happens, we track how many people have given, doesn't matter how much you give that that you give is important to us. And if you can find five bucks, that's great and echo what Kerry said, you know, we really fortunate that the J and J brought us all and put us all in a room and then step back and, and let ideas flow. And I agree with what carries it Jeff came up with this idea and we jumped all over it hijack the rest of the agenda and spent the day figuring out how to make this work. But it isn't just j&j to get help. So if you have a business and you want to do a fun morale booster in February, let's face it, February in North America sucks. It's cold, rainy, and awful. or snowy and awful. So have a little campaign in your office put a little sign up by the coffee pot. It could be you know, your your local HVC vendor, it could be another company in the industry. Whatever this isn't a company's it isn't a person. It's everybody's Stacey Simms 16:12 more info on all of this at Diabetes connections.com. And I really hope you find it in your heart to learn more and to donate spare rose is a great cause. And we're going to do our best to make our own donations with something fun today. If you're familiar with Wait, don't tell me the NPR Quiz Show. This next segment is with full credit. And full apologies to those fine, folks. We're gonna have the Diabetes Connections version of bluff the listener and a News Quiz. If you're not familiar with Wait, wait, don't tell me. If this will still be fun. It's just kind of kind of silly. All right, so we need to welcome a listener. And I'm so excited to welcome Laura Duvall. She is here in Charlotte, and she's a published writer, founder of duelled marketing group. Laura, thanks for being here. Unknown Speaker 17:01 Absolutely. Thanks for having me. I'm excited. Stacey Simms 17:04 Laura, you have type 1 diabetes, right? Tell me a little bit about about you. Unknown Speaker 17:10 Oh, absolutely. So I was diagnosed with Type One Diabetes, when I was 10 years old. And have really benefited I think over the last 20 years, 25 years or so with the new technology in play for diabetics. So I got a pump when I was in high school that really allowed me to kind of play sports and go out with my friends. And about two years ago, I got one of the Dexcom sensors, which has totally changed my world. I'm a big runner. So I have done quite a few half marathons, was actually training to run the Disney marathon this coming weekend I got injured. But the technology that's available for diabetics now is really amazing. I mean, it just gives you confidence that, you know, you can be an active and force and you're not having to test your blood sugar 800 times a day. So you know, I have had really benefited I think from the advances in technology with diabetes and you know, love love being involved in the starlight community and then the health and wellness area. I've worked for a health care system for about eight years in marketing and and now have stepped out on my own to do the...
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"Hey, you're like Daddy now" - When a child is also diagnosed with T1D
02/09/2021
"Hey, you're like Daddy now" - When a child is also diagnosed with T1D
Chris Stocker is a well-known voice from the early Diabetes Online Community, launching his blog about life with type 1 diabetes called in 2007. In 2019, he stepped back a bit from the DOC with good reason: his daughter, four years old at the time, had just been diagnosed as well. Now, two years later, Chris is jumping back into the online community via and a . He talks to Stacey about what it's been like for his family to adjust to their new situation. He also has a great message for any men who live with T1D. In Tell Me Something Good, And some new books are our for the littlest ones of us.. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Stacey Simms 0:00 Diabetes Connections is brought to you by Dario Health – manage your blood glucose levels increase your possibilities by Gvoke Hypopen, the first premixed auto injector for very low blood sugar and by Dexcom take control of your diabetes and live life to the fullest with Dexcom Announcer 0:21 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:27 This week a well known voice in the early diabetes online community stepped back for a bit stopping his blog and his brand new podcast when his daughter at age four was diagnosed with type one herself. Chris Stocker 0:39 Do you want to help me do it? Do you want to help me I you know decorate my infusion sets and things like that. So we shared those common bonds and that's how we looked at it from the day of diagnosis was Hey, you're like daddy now. Stacey Simms 0:51 It's been two years since Chris Stocker’s daughter's diagnosis, and he's jumping back into the online community. Chris shares his story as a dad of a child with T1Dwho lives with it himself in Tell me something good. One of the scientists behind one of the COVID vaccines is one of us and some new books for the littlest ones of us. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show. We aim to educate and inspire about diabetes with an emphasis on people who use insulin aim host Stacey Simms, my son Benny was diagnosed with type one right before he turned to more than 14 years ago. My husband lives with type two diabetes. You know, I started blogging just after Benny's diagnosis. And that blog, which I eventually called off the dial led me to the DOC the diabetes online community at that time, and this is 2007. When I started, it was basically blogs and some online chat rooms. And you know, gradually social media exploded and everything changed to what it is now shorter posts, influencers, more podcasts, that sort of thing. The Twitter chat remains DSMA on Wednesdays, if you're not familiar with that, that is a 10 year old now more than 10 year old chat on Twitter, I'll put a link in the show notes, but it's just hashtag DSMA Wednesday evenings at 9pm. Eastern for anybody in the diabetes community we'd like to give it a plug it's not separated by type or if you're a parent or a person with type one. And that's one of the ways that I first remember meeting Chris stocker and it was great to talk to him this week for so many reasons, but it really brought me right back to those early days. You know, when we had diabetes blog we can you know, to feel like we're finding all these really to me amazing, cool people in my computer, which depending on your age, either sounds ridiculous or you know, right on you, you know what I'm talking about. But before we get to Chris, I do want to share a Twitter post that I was tagged in this is self serving, but I just I have to share it. A gentleman named Hugh Stimson retweeted my episode release about Lily and Ypsomed and my conversation with with Mike Mason from Lilly diabetes all about that. And he wrote, “I wish political journalists asked follow up questions, the way Stacey Simms asks health device executives follow up questions.” Whew. Thank you so much for writing that. It's hard to describe what that means to me. And and compliments are always nice. But that right there is why I started the show back in 2015. I would listen to podcasts. And I'd be yelling back at the hosts, I'd be asking my own questions. I'd be like, follow up on that. He didn't ask. You know, look, radio people are interesting. And well, I am really glad to be built like this. It is an odd thing sometimes. But I'm glad it came in handy. I'm glad it helped. And I'm really glad that you feel like I'm doing a service by asking those questions and trying, you know, sometimes we don't get answers, but you got to ask. So thanks again. I really appreciate it. All right, Chris Stocker in just a moment. But first, Diabetes Connections is brought to you by Dario health. And you know, one of the things that makes diabetes management difficult for us. It just really annoys me and annoys Benny, it isn't actually the big picture stuff. It is all the little tasks adding up, you know, are you sick or running out of strips? Do you need some direction or encouragement going forward with your diabetes management with visibility into your trends help you on your wellness journey? The Dario diabetes success plan offers all of that and more. No more waiting in line at the pharmacy. No more searching online for answers. No more wondering about how you're doing with your blood sugar levels, find out more go to mydario.com forward slash Diabetes Connections. Chris Stocker’s blog back in the day was called life of a diabetic and he wrote about everything from his diagnosis as a college student in 2009. To Day in the Life stuff to product reviews to what dragged him down and made him mad and what lifted him up. When his oldest daughter was diagnosed just before she turned four. Chris felt like he had to pull back and face this challenge before venturing back online in such a public way. But he never really left the community. And I think dads and men with type one as you listen, there is really great advice here for you in terms of support and asking for help. Chris, welcome to the show. I'm excited to talk to you. I feel like we have talked before, but it's only been on Twitter and Social Media. Thanks for jumping on. Chris Stocker 5:19 No problem. I'm definitely happy and honored to be a guest here. Stacey Simms 5:24 Well, you're a podcast pro and a YouTube Pro. So this should be fun. But we do have a lot to talk about. Let's just start at the beginning for you. Because your diagnosis story happened when you were in college. Right? You were 19. Tell us about that. Chris Stocker 5:35 Yeah. So I was I was a freshman in college, I was playing football at King's College up in Wilkes Barre, and the season was over. And I just was I was working out I was losing a ton of weight. I was drinking a lot of Gatorade and water. So I was urinating quite frequently. And I just thought I was losing weight because I was working out. And then this one night, I didn't have an appetite. I started getting sick all day long. And I ended up in the emergency room with 858 blood sugar. Stacey Simms 6:05 What year was that? If you don't mind me asking. Chris Stocker 6:07 That was in 2000. Wow. 2004. Stacey Simms 6:10 What was the diagnosis process? Like? Did they you as a young adult like that? Did they believe you had type one? Was it an okay, diagnosis? Chris Stocker 6:17 Yeah, it was. I honestly don't remember too much of it. Because I was kind of in in like a foggy state. My mom has worked at a hospital for almost 40 years. She took me to her hospital. So of course, we got the VIP treatment went right into the ER. And, you know, they took labs, and immediately The doctor came in and was like, You have type 1 diabetes. So there was no real question or debating anything whatsoever. Then I remember seeing the on site endocrinologist, probably I think it was that night. This was probably around 2am. So yeah, there was no discussion ever about whether it was type one or or another type of diabetes. Stacey Simms 6:56 And what did they start you want? You immediately put on? I think 2004 elantas was around for adults, but not necessarily for kids. Like what what was your beginning entry into diabetes tree? Chris Stocker 7:07 Yes, my very first night home, I can remember almost exactly the ratios and everything. I was taking 14 units Atlantis at night, the carb ratio was about 51 to 5015 to one. And that was Yeah, I was on lantis. And I think I started on probably either human log or no blog at that time. I can't remember that. But I didn't know anything about pumps or was never even brought up to me at that point in 2004. Either. Unknown Speaker 7:36 Did you go back to college, Chris Stocker 7:37 I I was not able to go back to King's College at that time. So I stayed home for a year I went to community college. And then I got this bright, awesome idea that I wanted to go to college away from Pennsylvania. And so I decided to go to Boca Raton, Florida and finish up school at Florida Atlantic University. So not only was I only a year or so maybe a year and a half, after diagnosis, I was then telling my mom that I was going about 1200 miles away to go to college. So it was definitely a rough conversation to have with her for sure. Stacey Simms 8:15 Okay, well, it is sometime later, let's say right, it's, you know, we know you did pretty well in college, I assume. Can you give us parents the reassurance that you know, you You did? Okay, and that was the right move for you? Chris Stocker 8:27 Yes, I mean, it definitely forced me to really grow up pretty quickly. I mean, I was 20 by the time I went there, but I was a little bit more mature than a lot of my, you know, my roommates and a lot of my classmates, because I was managing this disease pretty much by myself. I had no family, no friends down there. So it was really it was on me, I was in constant communication with my diabetes educator up here in Pennsylvania. So I was able to communicate via email with them quite often. So you know, there were some times where I had some pretty high blood sugars. I did actually end up at the ER one night, because I was getting my insulin through the school on campus pharmacy, which was not open on the weekends. And I thought that I could go from Saturday afternoon till Monday morning with just about 10 units of insulin which I use in one meal. So I actually ended up in the ER, I had met my girlfriend who's now my wife down there. And this was all new to her too. And she ended up taking me to the hospital and think I was probably up in the five 600 range. And then that was an interesting phone call to my mother as well. Who at that time, then flew down and did the motherly thing and came down and spent a few days down there with me. Stacey Simms 9:49 I'm wondering though, I mean, my kids, my daughter's in college far away. Then he is a sophomore in high school and we're starting to talk about college and I've told him you know, you can go wherever you want. I'd love for him to stay next year. We're at least in this state, but I doubt that he will. I'm curious looking back What made you want to go so far away? I mean, do you feel I don't wanna put words your mouth I wonder like, did you want to prove something to yourself? Did you just love that school always wanted to go to Florida like why from there's so many great schools in that Pennsylvania northeast corner? Chris Stocker 10:16 The weather? Yeah. Yeah. So I was playing football. I played football my whole life. I was playing football, I kings, I actually left the football team because I had no energy. I couldn't I didn't want to work out anymore. Later to find out that that was diabetes related. And I just said, You know what, like, I don't wanna play football anymore. I just want to go somewhere that's totally different than than where I grew up. I love Pennsylvania. I'm actually back here now. But I wanted to go somewhere totally different. And I started looking at colleges. I'd always wanted to go to UNC Greensboro. I don't know why, but I always wanted to go there. And I started looking online. And one day I was watching a tennis tournament, and Andy Roddick was my favorite tennis player and it popped up that he lived in Boca Raton. So I went on the internet, looked up colleges in Boca Raton, I found Florida Atlantic and I fell in love with their website. So I always used to joke that I have Andy Roddick to thank for meeting my wife. Even though I've never met Andy Roddick, and Andy Radek has no idea who I am. Stacey Simms 11:22 Well, you wouldn't be the first to go to college because somebody either lived in that town or went to that town that you admired. But that's a great story. I love it. I want to talk about the diabetes online community, you were a very big part of this. You still are. But there was this time when there were so many bloggers and we were all just finding each other on Twitter. But I at first like to skip ahead in your story to when your daughter was diagnosed. I think that's such a fear of so many people I know who are adults with type one. But it does happen of course and you do deal with it. Do you mind sharing her story too. When was she diagnosed? Chris Stocker 11:56 She was we're actually coming up on her two years, in about a week and a half year so she was diagnosed on February 12 2019 in the middle of a snowstorm. And that was when we decided to take her to the ER was when we had about eight inches of snow on the ground. Stacey Simms 12:19 Right back to Chris in just a moment Diabetes Connections is brought to you by g Bo hypo pin. And almost everyone who takes insulin has experienced a low blood sugar. And that can be scary. A very low blood sugar is really scary. And that's where GMO hypo pen comes in. It's the first auto injector to treat very low blood sugar Jeeva hypo pen is pre mixed and it is ready to go with no visible needle. That means it's easy to use in usability studies, 99% of people were able to give g vote correctly. I'm so glad to have something new, find out more go to Diabetes connections.com and click on the G book logo. g Vox shouldn't be used in patients with pheochromocytoma or insulinoma. Visit chivo glucagon.com slash brisk. Now back to my conversation with Chris about the night his daughter was diagnosed. Had you suspected I mean I, you know I don't wanna get too personal. But Chris Stocker 13:14 the signs were there. And I feel that I had maybe been living in denial for a little bit. It is something that I had thought about every single day from the day my wife told me she was pregnant, that that what if scenario and it was something that I talked about a little bit, but I didn't talk about it a lot because I felt too vulnerable, I guess. So I shared that because I knew I would not be the only one that had those feelings. But when I would see her, she was potty trained. So she was waking up probably three or four times a night asking for water and having to go to the bathroom. And I really started to see a change in how frequently she was going to the bathroom. And then that kind of was going on for you know, a couple of nights. And then just one night, I just had a gut feeling. And I said well let's pull out my meter. Let's check her so you know, of course, she didn't want that to happen. And you know, I can remember just looking at the meter. The number was in the 250s but I just remember looking at the meter and then just knowing and just knew and just being just crushed. So it was it was something that I had kind of mentally prepared for but it's just one of those things I don't think you're ever prepared. You know you think you might be but it's just you know, it was just a crushing feeling. But then the dad and the type one in me kind of just said hey, it is what it is. We just got to do it. And you know we took it to the hospital. I'm amazed by how she handled the entire thing. It was just unbelievable being in a in an ambulance to go from the ER on hospital to the pediatric unit at another hospital. I mean she loved that still talks about it to this day. Really Stacey Simms 14:57 what did she do what she did like she was feeling Okay, and she was excited. Chris Stocker 15:01 Yes. So she didn't really know what was going on exactly our local hospital, which was, you know, a few blocks away, they didn't have a pediatric unit. So it's a system hospital. So they just, you know, put her and my wife in the ambulance and took them to the hospital that had a pediatric unit for her. So she got to watch TV pretty much all day long. She got to play with toys in there. So it was different, you know, getting getting those first round the labs done and putting her into the burrito as they called, it was probably her only bad memory of the entire process. So she definitely still talks about those days, even, you know, she was a month away from turning four. What is the burrito? So sorry, later down on the table to draw labs and freaking out? Yeah, so they kind of, you know, they put like a weighted almost like a weighted blanket over her to kind of strap or in and they just called it a burrito, I guess to make it sound not so terrifying. Stacey Simms 16:00 How long did you stay in the hospital? And then what did you have to do? I assume you know, your you and your wife are pretty well educated about diabetes. So I don't know that you needed much of that. But it's different when it's your child, Chris Stocker 16:09 I would assume? Yeah, it's totally different. And we were in the hospital for about two and a half, maybe three days, I do know that they kind of rushed us through the process. Because when we first went there, I basically just said, Hey, listen, I have type one. I know what it's like, you know, I know what to do. But I don't have a child with it. So I know I need to, you know, relearn some things, and things are going to be a little different. But the, you know, the staff there and the whole diabetes team was very helpful. And really, they directed most of the education, most of the conversations towards my wife, which was something that we kind of asked them to do, because I really, you know, my wife had lived with me for 14 years before that. But my diabetes was kind of just my own diabetes, I didn't ask her to take an active part and help managing if she knew if I was low to give me Skittles, she knew if I was high, I needed some more insulin, but she knew that I counted while I was supposed to be counting cards, but she knew the basics, but really, she needed to start, you know, learning. What is basal? And what is this? And what is that? So a lot of that education was geared towards her. And I think it was, you know, very helpful, not just for her, but also for me, as somebody that was living with it for at that time, I guess it was 15 years, then that there was like a refresher course that I that I needed. Because I was in my I was in my my own habits. I'm in my own ways. And it was it was really good to kind of take a step back and relook at how you know, what is diabetes one on one, you know, what is the right way to kind of do some of these things. Stacey Simms 17:48 I'm picturing that, you know, your daughter has watched you do this, even if you haven't been doing it in front of her the whole time and everything that this is now...
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"We Need More Dorks" - NASA Engineer Ernie Prado (Classic Episode)
02/04/2021
"We Need More Dorks" - NASA Engineer Ernie Prado (Classic Episode)
Ernie Prado was diagnosed with type 1 as a teenager and is now a project engineer at NASA. He has a terrific story and it's not exactly what you'd expect. Ernie wasn't a diabetes superstar who lived a perfect diabetes life all along. We're so grateful he was generous enough to share the real story! This is our first in a new series of "Classic Episodes." In addition to our regular Tuesday episodes, we'll bring you an additional episode like this every Thursday. What’s a classic episode? It’s an interview that aired a long time ago but isn't dated in a way that takes away from the experience. We’ve been around for a while, so there’s a good chance you missed some of these back in 2015 or 2016. Stacey first spoke to Ernie Prado in 2016 and he's now the Project Engineer for something called the Super Guppy. He says it transports outsize spaceflight cargo in support of Artemis which will take the first woman and next man to the moon. ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode Transcription: Stacey Simms 0:00 This episode of Diabetes Connections is brought to you by Inside the Breakthrough, a new history of science podcast full of digital stuff with quite a few laughs along the way. Announcer 0:15 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:21 Welcome to a Classic episode of Diabetes Connections, something a little new this year. But as always, we aim to educate and inspire by sharing stories of connection with a focus on people who use insulin. I am your host, Stacey Simms, and I am really glad that you are here. So I said something new starting this week in 2021. In addition to our regular Tuesday episodes, I'm going to be bringing you an additional episode like this on Thursdays. So what is a classic episode, it is an interview that has already aired a long time ago, but it is still what we would call evergreen. It's not dated in a way that takes away from listening to it. Now we have a lot of episodes. We've been around for a while. So there is a good chance that you missed some of these interviews back in 2015, or 2016. And these are really interesting, fun people and I wanted to bring their stories to a wider audience. This week, you are going to hear the story of a NASA engineer, a rocket scientist who lives with type one. Ernie Prado has a really great story. But it's not exactly what you would expect. He wasn't a diabetes superstar who lived a perfect diabetes life all along. And I'm really grateful that he was generous enough to share the real story you will hear from Ernie in just a moment. But first, these classic episodes are brought to you by a brand new podcast. And this is pretty cool to have a sponsor who is also a podcast. So let me tell you all about this. This is inside the breakthrough. A new history of science podcast full of Did you know stuff like did you know Henry Ford and Thomas Edison were really good buddies. They even work together on an electric car, and it still failed. Episode One dives into stories including Archimedes yelling Eureka while naked in the streets and Alexander Fleming's discovery of penicillin by accident inside the breakthrough was created by SciMar SciMar is a group of Canadian researchers dedicated to changing the way we detect, treat and even reverse type two diabetes. This show is historical wisdom mixed with modern insight with quite a few laughs along the way. I've listened to it. It's a great show really high production value, great host and great information search for inside the breakthrough anywhere you listen to podcasts and at Diabetes connections.com. It has been almost five years since I first spoke to Ernie. What is he doing now? He is the project engineer for something called the super Guppy. It sounds funny, but this thing is really amazing. I'll put a photo and a story behind it in the Diabetes Connections Facebook group, Ernie tells me it transports outsize spaceflight cargo in support of Artemis, which will take the first woman and next man to the moon. So pretty important job really interesting stuff. And I think as you listen to this interview, you'll see that Ernie is really where he wants to be. Please remember, this podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. So here is my interview with NASA's Ernie Prado from June of 2016. Ernie, thank you so much for making some time to talk to me today. I really appreciate it. Yeah, before we get to the rocket science and NASA and everything that's going on now, take me back to the beginning you were diagnosed with Type One Diabetes at the age of 15. Did you know at that point, that you wanted to have some kind of career with the space program? Ernie Prado 3:55 Oh, yeah. So my life goal, I guess when I was younger, I was always drawn to space and airplanes. And my mom said, I cry if I didn't watch Star Trek when I was like four. So I wanted to be an astronaut. And before that I wanted to be a fighter pilot and fly f 18. So I was always drawn towards this and my goal was to end up in space. Stacey Simms 4:18 Well, you were diagnosed, as I said, age 15. The diagnosis was about, let's say 15 years ago, you're you're 29 you're 30 Ernie Prado 4:26 Yeah, it's half half my life now. Yeah. Um, Stacey Simms 4:31 what did the doctor tell you at that point was that you have type one. And you're never going to do these things that you always wanted to do? Or was it a little bit more kind? Ernie Prado 4:41 So actually, the past few months, I've been trying to figure out the exact date I was diagnosed just because, you know, I've been reading about folks and a lot of folks have a die of diversity. And I kind of was trying to figure out mine. And I've been thinking about that actually contacted the hospital. And unfortunately, I don't have the records. More, but I don't remember the doctor saying, you know, you're not gonna be able to do a lot of this. I feel like I've encountered more that, you know, outside of maybe the medical community. So I've been lucky enough to take part in a medical study from with FA and utmb about trying to get folks of chronic conditions like diabetes into space through companies like Virgin Galactic, and XCOR. And so I got to go into centrifuge. And that's pretty cool thing for diabetics to do. I did encounter some resistance when I was trying to become a flight controller. And so at the time, I had other projects coming up, so I kind of, you know, let that go to the wayside. But I haven't stopped me from doing most of the things I wanted to do. Maybe a few, but I try to find ways around it and still do them anyway. Stacey Simms 5:52 Yeah, and I want to talk more about that. I'm just trying to kind of figure out what this was like for teenage you. Because that's a tough time anyway, and to be diagnosed at age 15. When you're hopefully, you know, you're busy with a lot of other things. Do you remember what it was like at that point in your life to make that kind of change? Ernie Prado 6:10 Yeah, it was really hard, actually. So I came to accept that a lot more about the time I was 18. I was about three years after those first three years were a little bit difficult. Because, unfortunately, and you know, I love my mom to death, but she kind of told me not to talk about my diabetes, and to not let people know I had it. And over the years, I've realized that was a little bit, not probably not the best method to approach it. And so I dealt with it on my own a lot or just with support at home and from my family. You know, Stacey Simms 6:44 I'm sorry to interrupt. I've heard that from other people that at, it seems like a better idea to try to avoid discrimination, ignorance by kind of just keeping it to yourself, is that maybe what your mother was trying to do? Ernie Prado 6:59 I think so. And, you know, I think she did with the best intentions. But it was, it was really difficult to not talk about something that I considered So in general, about myself, because it was kind of thrust on me and said, hey, you're earning now you're diabetic, and, you know, it was through no fault of my own, it just happened. So it would be the same thing, as you know, having like a really strong interest in you know, like space, I wouldn't be able to hide that. I didn't want to hide the fact that I was out back. When I got to college, I started telling everybody and you know, I've continued that. But it was difficult, you know, to try to explain why I wasn't eating certain things around my friends, or why couldn't go out sometimes, or why I had to stop playing football and wrestling and all that. So it was a, I'd say it was a pretty good difficult time in my teenage years. Stacey Simms 7:49 And you had to stop playing sports was that because of I'm gonna just guess, because your mom was not comfortable? Or was it something that happened? Ernie Prado 7:57 Yeah, partly that. And my first doctor, I think, you know, in the abundance of caution said, you know, you might want to take it off for a little bit and learn about your diabetes and how to manage it. And it might have been understood as he shouldn't be playing sports anymore. But depressing. Yeah. Stacey Simms 8:18 Well, okay, so you get to college. You're you. You're telling everybody you have diabetes, what you study in college, were you now going ahead with the engineering with the career in space program? Ernie Prado 8:31 Yeah, absolutely. So when I got to college, actually declared my major before getting except for as soon as I got accepted, I believe. And I chose to pursue a double major in aeronautical sciences and engineering, and then mechanical engineering. Because I figured, you know, if maybe right now, I can't fly, or do what I want. I'm going to get involved somehow at NASA. And luckily enough, it ended working out. And I kept my majors throughout. And I tried to add a minor and do some pre med stuff, but I ran out of time and money, so I didn't get that. Stacey Simms 9:03 And were you able to go to work for NASA right away? Where'd you go to work? Um, Ernie Prado 9:08 so yeah, I was very fortunate. I began working at NASA as a co op at the age of 20. So it was my sophomore year in college, and I've been here since. So it's been about eight and a half a while on this cluster nine years. I've been out here. And so full time for about a little over five years now, though, for the first few years, I went between school and working here at Johnson Space Center. And I think in total of my college time was about a year and a half out here. So I really got my degrees in about three and a half years. Although I was in Davis for five years. Stacey Simms 9:39 What was it like? And maybe this moment happened when you were as you said, you were 20 and you went to work there but you're still in college, or maybe it happened after? What was it like when you walked into NASA and realized I am going to be here, at least in this capacity. Ernie Prado 9:55 So I'm kind of smiling like I believe right now. Remember that first day I mean, I'd never been to Johnson Space Center before, you know, being hired here. I've been at Kennedy Space Center with my dad, that was my graduation gift from high school, he took me there and in his big truck, and we tried to see a launch of, I believe, is STS 114, which was returned to fly and Stephen Robinson was going to launch that mission, which he was an Aggie from UC Davis. And that's where I was going to school. Then hurricane Ernesto roll through, me and my dad are both named Ernesto, and it hit a lightning tower. So they delayed the launch, and I didn't get to see it. But then, you know, a few years down the road, showing up here and saying, Man, I'm walking the same like ground, the astronauts have walked in flight controllers, and all these people in history. It was this really cool sense of I can't believe it. And I still kind of get that pretty often. It's a really cool job. Stacey Simms 10:55 It's so amazing when you get to do the things you've always wanted to do. That's a great story. I love hearing that. I was reading an article that the writer and author Moira McCarthy wrote about you more has been on the show a couple of times already. And she talked about I guess you told her, there was a point at which you realize that, you know, diabetes was something that you needed to kind of pay more attention to, during your time at NASA. Can you tell me a little bit about that? Ernie Prado 11:29 Yeah, so I guess that happened. Because I was working at the NBL, which is the Neutral Buoyancy Laboratory. It's our big environment for it was a gigantic pool, 6.2 million gallons. And it's the environment where we train astronauts at a spacewalk. Typically, if you're a co-op, in that building, you as a guest, at the end of your rotation, you get to dive in this big pool, which has a mock up of the space station in it. So it's this amazing, cool, cool thing to do. And my A1C was at 13.9. so incredibly high. I wasn't taking care of myself, just because I was stressed at school and more focused on getting good grades and kind of in a, I knew I had to diabetes, and I couldn't get rid of it. But I guess, and even though I told people, I wasn't accepting it, so my mindset was, well, you know, if I don't think about it, I don't have to deal with it. And that was a very poor mindset to have. So once they told me, Well, you know, your sugar is not controlled, you're not gonna be able to dive in this pool. I was, it was kind of a wake up call. And I was going to Well, that's a real bummer, because I don't know if I'll ever get to be here again. Or if I have this opportunity again. And so unfortunately, I didn't get to dive in the pool. But I had a very cool boss, he said, Well, you're still scuba certified. And although the medical folks won't sign off on you to do this, you can still snorkel the pool. So that's exactly what I did. I had my snorkel and I got to go about six feet deep in a 40 foot deep pool, I would have loved to sit on the floor and have my UC Davis flag. But, you know, I still got to hover above the mockups of the Space Station. And actually, there was two astronauts in there when I dove, I think it was Lincoln and Patrick, from STS 130. And I got to see them practicing for their spacewalk that they would do. And then later on, when I was back at school, I got to see them through the spacewalk in space, and I was going, I got to be in that tank with them. So I got I still got to experience it, luckily. But that was the point where not taking care of myself almost hindered something really cool that I could have done. Stacey Simms 13:29 Okay, so I have a dumb question for you. They learn to spacewalk or they practice spacewalk in in a pool. Ernie Prado 13:35 Yeah, so it's interesting, you want to think that you learn how to do space walking in a pool. When you're in orbit, you're in microgravity. And you're basically falling at the same rate as gravity, so you kind of just float. And so what the pools can simulate is the weightlessness. What it doesn't simulate is the resistance to movement. So in space, there is no atmosphere. So you can move very easily with very low friction. In comparison to work in a tank, you know, full of water, you have a lot of friction, when you try to move, it's kind of like when you extend your arm and try to swim in the pool. It's very difficult to do. So you can't simulate that, but the weightlessness portion you can. And they do that by attaching weights or foam on to the spaces that are in the pool, and you become neutrally buoyant, hence the name of the laboratory. So you don't sink in, you don't float just kind of hover there in one space and water. And so you actually can't even swim. If you can translate along the mock up or along the space station mock up with the hand rails on like you would on orbit. But if you need to go from one location to another, and you don't have anything to grab onto divers have to come and move you. Stacey Simms 14:40 Wow. That's amazing. What made you decide Do you remember when you were younger? You said earlier your mom said you got upset if you couldn't watch Star Trek at age four. Okay, first of all next generation or original Star Trek? Very important question, Ernie Prado 14:55 I believe, I think next generation but I like them all. Now. And when they come on, I will watch them. So I'm a big fan. Anything space related? And I'm in love with. Stacey Simms 15:07 It's funny but but what would you remember what got you really excited about it as a kid? Was there anything you can think back on and say that, you know, you just really wanted to go into space? We were fascinated by the planets. I'm always curious what, what sparks a passion in someone? Ernie Prado 15:23 So I feel like that's the hardest question to ask. And it's typically one of the ones that is asked, because it is an interesting thing. But you know, and you always hear the folk folk say, I just got the space bug, and it's kind of like this thing that just happens. So I do remember loving planets, loading stars, loving spaceships, is kind of everything about that. I'm not sure exactly what did I just think I was fascinated. There's one moment that kind of stands out to me, that was pretty neat. And it was this. eight and a half by 11, kind of photo of the first few shuttle astronauts are john young and Bob Crippen, and they were in their orange pumpkin suits. And I just remember looking at that, you know, at the time, I drew on the back and wrote my name, and like pink highlighter, and going, Wow, these folks are really cool. They get to go into space. And it didn't really dawn on me just how cool their job was, for some reason that picture always stands out in my mind. And then, you know, at 21, about a year after I started working here, I actually got to meet john young and shake his hand. Oh, wow. And, you know, so he was the commander of the first shuttle flight. But he also flew in Gemini, and then Apollo and he walked on the moon. So I shook the hand of a Moonwalker. And then that kind of like, is what threw me back to that memory of that of that picture going, whoa, that's really cool. And, you know, I think my dad probably has something to do with it, because he was in love with the shuttle program. And he told me about, you know, driving loads in his truck over to, I think, Edwards Air Force Base and Palmdale when they were building enterprise, which was tested shuttle for kind of clarity, and never flew into space. But it did the approach and landing test, and he has pictures of it, you know, back before the real shuttle ever flew. And then I remember asking him, did you ever think you'd have a kid that worked for NASA? And he said, No. Probably some of his interest rubbed off on me. Stacey Simms 17:15 That's great. You mentioned earlier, a couple of things I wanted to go through. You mentioned that you were in a centrifuge. Yeah. Tell me about that. What was that was that for testing. And I mean, that's just that's one of my nightmares, to be honest with you. So tell me all about that. Ernie Prado 17:30 So that was a really awesome experience that happened about three years ago, the commercial space tourism industry is starting to come up, it's still very young, but they need to do your research on how a more average person will fare in the environment of elevated g loads and weightlessness....
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Learning More About the Lilly Diabetes Insulin Pump
02/02/2021
Learning More About the Lilly Diabetes Insulin Pump
When Swiss pump maker Ypsomed launches brings it's business to America, likely in 2022, it'll be with Lilly Diabetes as their partner. The Ypsopump will be the first pump in the US that only takes one brand of insulin. This week, we spoke with Mike Mason, president of Lilly Diabetes about that decision, more about how the actual pump system will work and their timeline. Stacey also talks about how they were able to use a coupon to keep Benny on humalog - it wasn't as easy as some have said. And she has advice to make it work for you. Plus, new A1C guidelines for kids with diabetes. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode Transcription: Stacey Simms 0:00 Diabetes Connections is brought to you by Dario Health. Manage your blood glucose levels increase your possibilities by Gvoke HypoPen, the first premixed auto injector for very low blood sugar and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:21 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:27 This week, Swiss pump maker Ypsomed is teaming up with Lilly Diabetes to launch an insulin pump. Here in the US, it'll be the first pump that only takes one brand of insulin is Lily about the thinking behind that decision. Mike Mason 0:41 We look at this ad we don't look at it necessarily as limiting options, we look at bringing up a new option to the marketplace that as an integrated solution can provide a new way to be able to control the blood sugar. So that's how we look at it. Stacey Simms 0:57 That's Mike Mason, president of Lilly Diabetes, we talked about what that integrated solution is more about how the actual system will work, and of course more about its unique proprietary nature. I'll also catch you up on our insulin coupon experience and talk about new A1C guidelines for kids with diabetes. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show where we aim to educate and inspire about diabetes with an emphasis on people who use insulin. This year, I'm doing a heavy focus on technology. So this episode is a bit of a follow up, or maybe a partner to the one we did in January with Ypsomed. As was announced late 2020 Ypsomed and Lilly diabetes are teaming up to bring the existing YpsoPump which is used in Europe and Canada and some other countries around the world to bring it here to the US hopefully to submit to the FDA later this year, and be in the marketplace in 2022. The Ypsopump, as you heard in that episode already has a lot of features that are very popular. It's a very lightweight pump, it has the hybrid closed loop system, similar to Tandem t slim, similar to what Omni pod is hoping to launch later this year. So there's a demand for this kind of pump. But the question is what's going to happen because of the proprietary nature, as you'll hear in this interview, and as we talked about with Ypsomed, this pump will only take Lilly branded insulin. So to that end, and did you know that I have a weekly newsletter they do. And this year, I added a poll to it, which is really very popular. I'm so excited to see this. And when we did the episode with Ypsomed, I asked in the newsletter about your opinion on it, would you use a pump that only took one type of insulin? And I gotta say the results were really interesting and I thought kind of surprising. So 40% of people said yes if it's a great pump that is worth it 48% said maybe I'd have to feel confident about my insurance coverage and 12% said no way I thought the no way would be a bigger number so we'll keep those polls going I have a link always in the show notes about signing up for the newsletter it's very easy to do I don't spam you come on you know it's just me. I do send out a newsletter though with the week's show some thoughts about it that poll and some other information you know, as social media shows us all fewer posts frankly from the pages that we like and the people that we follow. This is a great way to make sure that you do not miss an episode and that you know what's going on with the show at all times. Okay, Mike Mason from Lilly in just a moment but first Diabetes Connections is brought to you by Gvoke HypoPen and almost everyone who takes insulin has experienced a low blood sugar and that can be scary. A very low blood sugar is really scary. That's where Gvoke HypoPen comes in Gvoke is the first auto injector to treat very low blood sugar Gvoke HypoPen is pre mixed and ready to go with no visible needle and that means it's easy to use. How easy is it to pull off the red cap and push the yellow end onto bare skin and then hold it for five seconds. That's it. Find out more go to Diabetes connections.com and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma visit Gvoke glucagon comm slash risk. My guest this week is the Senior Vice President of Eli Lilly and company and the president of Lilly diabetes. Mike Mason has been with Lilly since 1989. we last talked to Mike on the show back in 2018. It was our first conversation about the price of insulin. And we of course bring that up here in this interview. But we are mostly focusing on the pump and the partnership with Ypsomed and what it's going to take to bring it to the US although I promise I do talk about pricing and accessibility and everything you want to know. Mike, thanks so much for joining I'm really interested to learn more appreciate you coming on and spending some time with me. Mike Mason 5:04 Happy to do it, Stacy, appreciate what you do for people living with diabetes. Stacey Simms 5:08 Let's just start by talking about the partnership here with Ypsomed. How did this come about? Tell me about that, you know, the basics. And I guess we could start with really just, you know, why are you at really excited about this? Mike Mason 5:21 Now we're excited about it. I mean, what we do is we step back, and we take a look at where the unmet needs are in the marketplace, today, and then how science and technology is developing. And what we saw was that, unfortunately, a good percentage of people who who live with type one and type two diabetes for own insulin are not in good control. And so we saw an unmet need there. And we saw enough advancements in cgms, as well as technology that we felt that putting insulin together with a CGM, and in good software and analytics, that we hope can provide better outcomes with really less burdensome for someone who lives with type one or type two diabetes. So that's why we were interested in getting into this space. And as we were looking at options, we thought it was best for us to pursue a partner that had a good pump that was on the market today, who was an excellent developer and manufacturer of pumps. And we found the perfect partner in Ypsomed. So we we really liked their pump. They're an excellent Swiss bass manufacturer, and we think it's a good cultural fit for us, we think we really will work quite well together. And we're both very customer focused and want to make sure that ultimately, what's most important is helping people who live with diabetes achieved the control, Stacey Simms 6:49 before I asked you about the functionality of the pump. And before I asked you about the features of the pump, and more about the partnership, I'm just curious if we could go back, I was at the blogger event that Lily had in Cambridge, in 2018, where you showed us kind of the prototype of a pump that you were working on with a different company, can I ask, What happened to that is that not going forward in any way, shape, or form now, Mike Mason 7:13 oh, we very much hope that that product goes to the marketplace, the rights to the DEKA pump has gone back to DEKA, we really value our partnership with them. We think it's a very advanced pump. And we think it could really help people living with diabetes. And we know the DEKA is advancing, planning on, you know, advancing that pump to the marketplace. For us, we reflected back on how we can, you know, best use our capabilities to help people with diabetes and other therapeutic areas. And as we were facing COVID, we reflected on our ability to develop a new antibody in nine months and get that to the marketplace and manufacture that and we felt that as a company, our development, and manufacturing focus should really be on developing new medications versus new new pumps and new devices like that. So we decided our deck arrangement, we were responsible for the manufacturing and a good part of the development. And we felt it was better for us to find a partner who already had a pump, who is a manufacturer and developer, and for us to say primarily focus on building the integrated system and really having that experience with the people living with Type One Diabetes and type two diabetes. Stacey Simms 8:34 So any DEKA pump that goes forward, will that still be used with the proprietary cartridges that we're going to talk about down the road? I mean, it's slowly still involved with the DEKA pump whatever comes to market, or is it basically all in their hands now, Mike Mason 8:47 it's in their hands at this point. Stacey Simms 8:49 Let's talk a little bit more about that. Ypsomed partnership. As you listen, we did an episode with them. They went through a lot of the factors and different functionality of the pump. So I'm not going to go through that all again here. But I am curious, Mike, if you could talk a little bit about the algorithms in the pump. In other words, how might it be different from the other pumps that are coming to market tandems control? IQ software is one the Omni pod horizon, that sort of thing. Mike Mason 9:14 Yeah, I mean, I think algorithm will be critically important at the end of day what's what's most important is that you you build an integrated system and cannot help someone achieve better control. And what we think is we can use our 97 years of experience with insulin to build algorithms that that do a very good job of controlling insulin and blood blood sugar. And so that's our plans if we as we develop new products like Lyumjev our new ultra rapid insulin. This provides us to potentially provide unique algorithms that can really maximize the potential of a product like longevity. Stacey Simms 9:52 So let me ask you the the biggest question for my listeners is all about the proprietary nature of the pump. And before we get into that, let me just ask you a few details about it. But only use humalog or will it use other insulins you mentioned, Lyumjev things like that. Mike Mason 10:06 Yeah, let me tell you a little bit about the pump and why we were excited about the pump, we think it's a very good form factor. It's a small pump, it has a kind of icon based screen that makes it very easy to use for people who were. But one of the most interesting parts of the pump for us was the fact that they that uses a 1.6 millimeter cartridge. So it's a prefilled cartridge, that then gets plugged into the pump. And what that allows is allows someone to change if their reservoir goes down. So if the cartridge runs out, they can add new insulin independent of their infusion shed change. So if you think about the future of infusion sets, we think that will grow from three days to longer than three days, just like we saw the wear of cgms increase. Well, that doesn't help if your reservoir if you have to change your infusion set every time you use your your reservoir up. And so we believe that the 1.6 ml cart and the fact that they can, you could do kind of a hot change and change that independently. infusion pump should be a really nice feature for someone living with Type One Diabetes, or even in particular type two diabetes who uses larger amounts of insulin on a daily basis, be able to get the full life on an infusion set and be able to add insulin very easily into the pump. So that was one of the primary features that we liked. And so right now that 1.6 ml cartridge isn't on the market. And so in our press release, we communicated that we needed to make sure that we did launch that 1.6 ml cartridge in our insulins, both humalog and loon jet to make sure that that people could use our products in that pump. Stacey Simms 11:51 When it comes to market. It will only let me ask it this way. Right now in Europe and in Canada, though it takes the prefilled cartridge the same pump of novo, right I mean, these 1.6 milliliter cartridges exists elsewhere. This is a US only type of modification. Is it a different kind of pump that's manufactured in the US? How does that happen? Right back to Mike answering that question. But first Diabetes Connections is brought to you by Daario health. The bottom line you know you need a plan of action with diabetes. We've been really lucky that Benny's endocrinologist has helped us with that and that he understands the plan has to change has been he gets older you want that kind of support so take your diabetes management to the next level with Daario health they're published Studies demonstrate high impact results for active users like improved in range percentage within three months reduction of a one see within three months at a 58% decrease in occurrences of severe hypoglycemic events, try Darias diabetes success plan and make a difference in your diabetes management go to my dario.com forward slash Diabetes Connections for more proven results and for information about the plan now back to Mike about how the mechanics of the proprietary nature of the pump will work Mike Mason 13:17 well in the us right now there's that 1.6 ml cartridge isn't on the market place so we'll have to see you know is that advances is still kind of early on in development so we don't really know what instance will be available in the US for this you know in this cartridge size. But what do you think is important is first of all, I don't think anyone should be worried if they're on novels insulin or any other instance there's going to be plenty of pumps really good quality pumps for them to use so I wouldn't have you know anyone be concerned about their ability to have a high quality pump to use with their insulin what what we see is we we see an opportunity to provide a you know, an integrated, very simple to use pop another option for people living with type one and type two diabetes to have a an integrated, simple experience to improve their their blood control. Stacey Simms 14:08 Yeah, no, I think it's it looks like a fantastic pump. It's tiny, it's light. I know people in Europe who used to love it. I love the idea of having more pumps in the United States. But just to be clear, so I guess the the question about the proprietary nature that we keep referring to is it just because there's no prefilled cartridges of other insulins available in the United States? I mean you probably cannot answer this so I'm gonna say this out loud and you can say no comment or nothing but if I have a yep so mid pump that is approved in here and let's say 2022 and I bring in novo rapid or you know Novo Nordisk branded insulin from Canada in the same kind of glass insulin cartridge and I stick it in the pump I've made my IP so med Lily pump now compatible with other insulins. Unknown Speaker 14:56 Okay, didn't you comment on that Mike Mason 15:00 Wow, yeah, you're expecting a lot of people moving bringing product over from from Canada, I, you know, it's still we're still very early on in our apps is at this point, things are gonna have to develop and we'll get a better answer that question down the road. Stacey Simms 15:14 Got it? Okay, I know, I know, you cannot speculate you have to be so careful on what you say. And I appreciate you coming on and answering these questions. But I mean, I'm sure you can understand in a market that has three available insulin pumps in the United States that when one comes in, people have questions about why should I switch to him? And the biggest question that I have seen is, well, pumps usually have a four year warranty. And my insurance changes every year, whether I have with the same insurance or not, the terms often change, including what insulin they want me to use, we just went through this with my son this year, we had been using one type of insulin for a long time, and they switched us to another brand. And, you know, it's disconcerting, and it's a little, you know, it's, it would make I'll be honest with you, Mike, it would make me hesitant with the United States healthcare situation being what it is right now, to go to a pump, that would lock me into one kind of insulin, you guys have got to be thinking about that. What are the discussions? Like? Can you share anything about that? Mike Mason 16:12 Well, let me tell you kind of how we think about I mean, we, our goal is develop an integrated solution, I kind of look at it a little bit like the computer market, where, you know, early on, you know, you were able to and you still can today is build a an integrated system, you know, you can pick the monitor, you want the processor you want. And my brother continues to do that. And he has a great computer that works really well for him. And for myself, that's not what I'm looking for a computer, I've got four kids and a lot to do. And I want something that's just gonna work, I don't necessarily care what the processor is, or what the monitor is. And so that, you know, I kind of went to a Mac 1520 years ago, because it was simple solution. So it was another option out there, I think, you know, Apple provided a another option to people who needed to get work done and wanted to use a computer, we kind of look at that the same way. On the pump side, I think you're gonna have people who are want to have each component and be able to build that. But if we look at some segment of the market, and in particular those people with with type two diabetes, we believe a simple solution can provide, you know, a real good answer for those individuals. So what we look at this ad, we don't look at it necessarily as limiting options, we look at bringing a new option to the marketplace that as an integrated solution can provide a new way to be able to control their blood sugar. So that's how we look at it. Stacey Simms 17:40 So let's talk a little bit more about that integrated system. When I spoke to Ypsomed, they talked about it using a Dexcom having a very robust app, it looked like you were able to bolus by phone or you would be by the time it comes to the United States. Is the partnership with Dexcom exclusive or do you think you might work with other companies like Abbott, you know, on their libri and different cgms that could be integrated into the system? Mike Mason 18:04 Yeah, right now it's a three way partnership between us and and you have submit and then with your leveraging Dexcom CGM. At this point, we'll have to see how things progress and whether or not we bring Abbott or other CGM into the system. Stacey Simms 18:22 Ypsomed is also very much a pen company. And when I remember in that 2018 event that I've talked about before, Lily was also talking about integrative pens and things like that. Is that part of this deal here too? Or is it just a pump? Mike Mason 18:36 Now, this was just an exclusive partnership. ...
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Using Emergency Glucagon - What One T1D Mom Wants You To Know
01/26/2021
Using Emergency Glucagon - What One T1D Mom Wants You To Know
What is it like to actually give someone emergency Glucagon? What happens next? This week, Stacey talks to Bonnie O'Neil whose son was diagnosed with T1D at age 5 and is now 24. They had a scary situation while on vacation and out of the country. Everything worked out; Bonnie shares what she learned and what she wants other families to know. Bonnie is the author of a brand new book: . She has a unique family history of diabetes, losing a brother before she was even born and has a older sister who is still thriving today. In Tell Me Something Good this week, a big honor for one of our favorite frequent guests and fun news if your child plays Minecraft. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. EPISODE TEXT HERE... ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode Transcription Stacey Simms 0:00 Diabetes Connections is brought to you by Daria health. Manage your blood glucose levels. Increase your possibilities by Gvoke HypoPen the first premix auto injector for very low blood sugar, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:21 This is Diabetes Connections with Stacey Simms Stacey Simms 0:27 this week, what is it like, what really happens, when you need to use that emergency glucagon, I talked to a mom who found out while on vacation out of the country, Bonnie O'Neil 0:37 I was just all I could do to stop my hands from shaking and mix that glucagon and get it in him. So point number one was when you go on vacation, make sure that glucagon doesn't stay in your hotel, keep it on your person you just never know. Stacey Simms 0:52 Bonnie O'Neil's son was diagnosed at age five and is now 24. She has advice about using and carrying glucagon. She also has a unique story. She'll talk about growing up in the shadow of a family tragedy with diabetes, and how she and her sister have overcome that in tell me something good this week, a big honor for one of my favorite frequent guests. And does your child play Minecraft? Stay tuned. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show where we aim to educate and inspire about diabetes with a focus on people who use insulin. My son was diagnosed with Type 1 14 years ago, my husband lives with type two diabetes. I do not have diabetes myself, I have a background in broadcasting. And that's how you get the podcast. longtime listeners will know that this show is not really about our experience my family's experience of diabetes week in and week out. I don't share a ton of personal information about Benny, but we do talk about our experiences. And I bring that up because I did a show recently with him to mark 14 years, which was a pretty big milestone. And we've done a couple of shows together over the years. I always say Benny is a big goofball. But you know, he's got good things to say I like to talk to him. I'm very proud of him, even though I give him a hard time. And I got a really nice review that I wanted to share. I don't ask for reviews very often. Maybe I should if you'd like to leave a review, you can send one to me at the email address at Stacey at Diabetes connections.com. You can leave them on whatever podcast app you're listening to. You can drop them in the Facebook group. But this one really was nice. And so I wanted to share it and say thank you to Ruth Ann, who posted it following that 14 year episode where I talked to Benny and she says “I listened to it yesterday and came away feeling understood. I've had type one for almost 45 years diagnosed at age 12. Then he was honest in the way teenagers can be when they don't feel pressured to spin things to make other people happy. I found him incredibly inspiring.” She goes on to write “To me The message was you can be upbeat about life. But don't succumb to pressure to sugarcoat the hard realities of managing type one. I think being real is the healthiest approach to coping with a challenging chronic illness. Please tell him thank you from a grandma in Utah, Ruth.” And I will say thank you to you. That meant the world to me. I agree. I think it's so important to be honest to write that line of diabetes can't stop you from doing the things you want to do. But it will stop you and slow you down sometimes right not to sugarcoat things too much. I really appreciate you taking the time to write that down and share it with me. And of course, I will share it with Benny and Wow, good luck to you. 45 years with type one, you're the inspiration. If you would like to tell us something always happy to get nice messages like this. I'm always happy to take constructive criticism as well. I do have a few people over the years who have yelled at me. But I think I'm pretty easy to find either on social media or via the email address. And you can always go to Diabetes connections.com and get all the contact information there. But Ruth boy you made my day All right, we're gonna talk about using glucagon what that is like, and Bonnie's really interesting story in just a moment. But first Diabetes Connections is brought to you by Dario health. You know, over the years, I find that we manage diabetes better when we're thinking less about all the stuff of diabetes tasks. And that's why I love partnering with people who take the load off on things like ordering supplies, so I can really focus on Benny, the Dario diabetes success plan is all about you all the strips and lancets you need delivered to your door one on one coaching so you can meet your milestones, weekly insights into your trends with suggestions for how to succeed, get the diabetes management plan that works with you and for you. Dario has published Studies demonstrate high impact clinical results, find out more go to my radio.com forward slash Diabetes Connections. My guest this week is here to talk about using glucagon and I think we can all From that, but she has another important story that I don't want to gloss over. Bonnie O'Neil has been part of the diabetes community since before she was even born. bit of a warning, this may be hard to hear Bonnie's older brother died when he was eight, his type one went undiagnosed until it was too late. Now, this was back in the 1960s. But we know that's still gonna happen today. Her older sister was later diagnosed, she survived and is still thriving now. And Bonnie has a new book out. It's called chronic hope. So there's a lot to unpack here, including that very valuable information about her family's experience with glucagon. I found this to be a very valuable and eye opening conversation. And I hope you do too. Bonnie, thank you so much for joining me. Congratulations on your book. And I'm excited to learn all about you. Thanks for jumping on. Bonnie O'Neil 5:48 Thank you for having me. I'm excited to be here today. Stacey, Stacey Simms 5:51 tell me about your son. But he's doing now because he was diagnosed as a little kid. And he is all grown up now. Bonnie O'Neil 5:57 Yes, I've lived all the stages with him. So he was diagnosed as a five year old and he is now 24. So he's living not too far away from me about 15, 20 minutes, which I guess is every T one D mom's dream when their kid grows up that they live independently, but yet, we can still get our eyeballs on them and our arms around them from time to time. So yeah, he's doing great. Stacey Simms 6:22 You it's funny because being diagnosed, what does that 19 years ago? Isn't that long ago. I mean, my son was diagnosed 14 years ago. But in some ways, it feels like a different world. Do you mind taking us back to that time, if you could tell us the diagnosis story. And I'd love to also talk about what you all started in terms of management. Bonnie O'Neil 6:41 Sure, yeah, that's actually an interesting story. So I have diabetes in my family. So my brother was unfortunately died in the diagnosis process when he was eight years old. And that was before I was born. And so my parents had me in their 40s, basically to, you know, replace the child that they had lost. And then my sister was diagnosed when she was 16. And I was eight years old. And so I just grew up with it. We grew up with this fear of it being there. So I was always on the lookout for it. And I remember my first pediatrician when I want to have my first child, I said to him, so how do we test for this thing? Because I don't want it to be in in my child. This wasn't Austin. This is my oldest son, Alexander. And, and he's like, oh, Bonnie, you know, it comes on acutely. We can't just run a blood test every every few months, but you'll know it if you ever see it, frequent urination, and intense thirst. And so I was always looking and so the day that I noticed that in my son, Austin, you know, obviously, there's the major panic, but I had grown up through my three pregnancies, I had done the urine testing for gestational diabetes. And so I knew exactly what to do. I went to the pharmacy, I bought a test kit, and I dipped Austin's urine in it, and it turns deep crimson. And so I diagnosed him at home freaking out going to the doctor and saying, they're like, calm down. This is Odile, like it, maybe it's not type 1 diabetes. I'm like, Well, do you know what else it could be? And so we, you know, I bundle up the three kids and we're living in Connecticut at the time, I took them over to the pediatrician. And he didn't have ketones, because we caught it so early. And so their practice was leaning into something that they told me was what Yale was practicing at the time, although I have an endocrinologist friend from Yale, who assures me they never offered, I suggested that, but the thinking was, if your child doesn't have ketones, you don't admit them to the hospital. Hmm. So we went home, we literally went home without so much of the shot of insulin. As you can imagine, I was just freaking out because my brother didn't make it through his diagnosis story. So I was like, you know if you can remember Terms of Endearment and Shirley MacLaine, like shaky over the crib. Yeah, that was me that night, just like leaning over my son and just making sure all night long that he stayed alive anyway, that the pediatrician, the endocrinologist that my pediatrician was able to find for us was one who really didn't work with pedes. The youngest children they saw were really about 15 or 16. So we saw him The following day, and the long acting insulin that he gave him was Lantus. Stacey Simms 9:37 I was wondering if that was even approved, because I remember was not really 2000 so it was for little guys. Bonnie O'Neil 9:43 Okay, it was not it was it was not under age 10 and so I don't I didn't know any of that you know, and so, so that was the first there's two things that were very interesting in our in our care different so that was the one and then when we got to CHOP the Children's Hospital. Philadelphia. A week later, I forgot to say all this diagnosis happened exactly one week before we moved house from Philadelphia. Oh Stacey 10:07 my god, Bonnie O'Neil 10:08 I never recommend that moving house be part of your diagnosis to be that as it may that was our case. And so when we got to CHOP our the endocrinologist there was actually very keen to see know what would happen to this child being on Lantus at age five, I'm pretty sure that it's going to work out well, I can't prescribe it. But he came to me that way. So I can leave him on his protocol. So that was interesting. And it worked beautifully. So my son never used NPH. And I had friends at that time, who were very familiar with that insulin and just told me how fortunate we were that he never had to be on that. So that was one thing. And the other was, so my sister, the reason I gave you the backstory on my sister was that I grew up in a family of using exchanges, where you counted your you didn't count carbohydrates, but you looked at food, in terms of whether it was fat, or protein, or carbohydrate. And you gave each one an exchange. And so I was used to that world. And I literally was given a counting book that had both on it, it was the exchanges and the carbs. And it was kind of you could do it however you wanted. They were recommending I just use the carbs, but the exchanges were there as well. So that was interesting. Oh, and then there's a third one. Bonnie O'Neil 11:33 But I remember. So his diagnosis was shortly after the DCCT trial, results came out and talking about intensive insulin therapy and how important that was. And I remember several visits, going in and talking to my CDE and saying, I'd really like Austin to be on that intensive insulin therapy. And she would, she would look at me like I had 12 eyes and like to say something, and I didn't understand what she was saying. And she didn't understand what I was saying. And it was many months later that I realized that Austin was Stacey Simms 12:11 using Lantus and short acting together. Yes, exactly, was Bonnie O'Neil 12:14 exactly. So yeah. So I was sort of living in some a couple of old paradigms and had to get with the program pretty quickly. Yeah, Stacey Simms 12:22 but what a transitional time. Here was that that he was diagnosed, Bonnie O'Neil 12:26 it was 2002. Yeah. And I'm so thankful I that is it is that so spot on Stacey, because just a few years earlier, and and the story would have been very different. My sister's story is very different. Sure. Stacey Simms 12:37 And let's talk about your family for a moment. If we could be there's so much information there. You mentioned your brother, gosh, I can't I'm not even sure what to ask. But he died before he was diagnosed or during his diagnosis story. Was Bonnie O'Neil 12:48 this in the 70s? The 80s Yeah, it was 1962 Bonnie O'Neil 12:57 Yeah, yeah. So my sister was six years old, my my sister Barb, and my sister Johnny, my brother, Johnny was eight. And so it was Christmas week, and my sister had the stomach bug. And a couple of days later, after she got better, my brother started throwing up. And they assumed that he just had the stomach bug as well. And he may have had that, but it clearly he then slipped into decay. And so by the time he got to the hospital, which was actually New Year's Eve, what he was in a coma. And so he passed away three days later, to make the story even more unbelievable. My mother delivered my sister Betsy, just nine days after that. Stacey Simms 13:43 Oh my gosh. Oh my goodness. Yeah. You know, DKA is I don't have to tell you this. You know, it is the most dangerous time for people with type one and it's amazing to me how now. Gosh, we are you know, more than 50 years after what happened with your family with your brother? Yeah, we are still having something like 30 to 40% of people who are diagnosed with type one diagnosed in DKA, I know you work a lot are you you've written a lot with beyond type one. You know, are you involved in efforts? Do you see the you know the DKA awareness that's something that you you talk about. Right back to my conversation with Bonnie and we are going to hear her talk about glucagon in just a minute or two. And when you hear her talk about the emergency redbox, please remember, there are more options now and Diabetes Connections is brought to you by one of those by Gvoke Hypopen. Almost everyone who takes insulin has experienced a low blood sugar and that can be scary. A very low blood sugar is really scary and that's where Gvoke Hypopen comes in. It's the first auto injector to treat very low blood sugar. Gvoke Hypopen is pre mixed and ready to go with no visible needle. That means it's easy to use. Find out more go to Diabetes connections.com And click on Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma, visit Gvoke glucagon.com slash risk. Now back to my conversation with Bonnie and I just asked her about her family's tragic experience with DKA and how that's influenced her with what she does now in the diabetes community. Bonnie O'Neil 15:22 Yeah, I mean, I do write for beyond type one, and I'm very active with JDRF. I'm on the board of the founding chapter, the greater Delaware Valley chapter. And I know that we're doing a lot of advocacy work around that and, and even just trying to get the shift in titling someone has type 1 diabetes, a JDRF, has done a lot of work around that, and is seeing that that shift so that it's, you know, reframing it, so it's not Oh, they got diabetes, or my son didn't get diabetes on June 19 2002. That was when we discovered that he would be insulin dependent for the rest of his life. He was developing the disease before that. And so we're trying to change that language. I think we're making progress. So that there's there's an understanding that you are, you know, certainly with some of the antibody tests, that testing that is being done now to be able to know that, you know, this person's body is being set up to get the disease, you know, if you have, I think it was three out of the four markers. It's, yeah, Stacey Simms 16:31 well, and I was gonna ask you about that, about T one detect, we just did a show on that. We did an episode on that a couple of weeks ago. And when you think about something like that a person who has type one in their family, like you had and was so front of mind, I would imagine that you would have taken advantage of that with your kiddos, you know, years and years ago. Bonnie O'Neil 16:48 Yeah. And, you know, back then, and that was something that I asked my endocrinologist was, so should we do any sort of testing and their response, and I had to agree with it was, well, there wasn't anything that they could offer. Other than Gee, I'm really sorry, it looks like your child is probably going to get type one. So the way I've handled it now, as a mother of two adult children who don't have diabetes, is that decision is yours. If you want to be tested, we can get you tested. If you don't want to, I have to respect your decision. Stacey Simms 17:25 One of the things I really was looking forward to talking to you about and looking forward as a term I really should not use there. But I was very interested in is you were one of the few people I know who has had to use glucagon on their child, and then wrote about the experience. So I really appreciate you talking about this publicly. It is a fear that so many people have, you know, we have never had to break out that red box. And I'm so thankful for that. Would you share that story with us? You're even at home, right? You're on vacation? Bonnie O'Neil 17:54 Yeah. And I'd be happy to because you know, it's a it's a story that still brings up a lot of emotion in me, but it does have a happy ending. And there are some good takeaway points for your listeners in terms of preparedness. So yes, I'm happy to share the story. My family went on vacation to Costa Rica. So it was my oldest son's first year in college, Austin, that would have made him a sophomore, I think in high school and my daughter would have been eighth grade. And we realized that all the spring breaks were aligning all three kids were in three different schools. And we're like, Yes, let's go and do something fun. So we plan this, this sort of dream trip, you know, where you're going to be renting, staying in a treehouse. And like, I'd have some time at the seaside all kinds...
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Tandem's Control IQ at One Year: "The Real-World Data is Even Better Than the Clinical Data"
01/19/2021
Tandem's Control IQ at One Year: "The Real-World Data is Even Better Than the Clinical Data"
It's been a year since Tandem Diabetes Care released their Control IQ software, hybrid closed loop technology to help increase time in range. What have they learned about how people are using the system? Molly McElwee Malloy, Manager of Clinical Outcomes at Tandem Diabetes Care, is back on the show to answer your questions and to talk about what's next in the Tandem pipeline. Our innovations segment: using your CGM to get more out of exercise and.. a new study for people with rare forms of diabetes.. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode Transcription: Stacey Simms 0:00 Diabetes Connections is brought to you by Dario health. Manage your blood glucose levels increase your possibilities by Gvoke Hypopen, the first premixed auto injector for very low blood sugar, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:22 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:27 This week, it's been a year since Tandem diabetes released their Control IQ software, hybrid closed loop technology to help increase time it range.1 since that day, as we do around here. We've all been asking for changes. Tandem says they're listening, Molly McElwee Malloy 0:43 can it be more aggressive? Could it be less aggressive? Good, you know, do this or that I pick my targets. Could I put a timer on exercise? Could I do all that? We are looking at all of those things. I would say nothing's off the table right now. Stacey Simms 0:56 Molly McElwee Malloy, manager of political outcomes at Tandem is back to talk about possible changes to controlling q to answer your questions, and to look ahead at other tech in the Tandem pipeline In our innovations segment using your CGM to get more out of exercise, and a new study for people with rare forms of diabetes. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome back to another week of the show. I am so glad to have here. If you are just finding us if you are new to Diabetes Connections, welcome. We aim to educate and inspire about diabetes with a focus on people who use insulin, my son was diagnosed with type one right before he turned two back in 2006. My husband lives with type two diabetes, I don't have any type of diabetes, but I am the broadcaster in the family. And that is how you get the podcast. It's funny to look back on this year. Because not only did none of us have any idea what 2020 would really be like, but more to my point here, as I'm taping this on January 15. And planning to release on the 19th. This was a time when many of us in the community were just refreshing the Tandem page over and over again. Because Control IQ had been approved. And many of us had already talked to our endocrinologists about it and tried to get the prescriptions. And if you remember that time, especially on social media and some of the Tandem groups, it was a bit bananas. But we have been using Control IQ for a year. Now Benny got his set up at the very end of January, as I recall. And they are not a sponsor of the show. They do not pay me to say this. But it's been absolutely amazing for us, it has really made a big difference. And you know, I don't share numbers. I'm not all about the numbers and straight lines with him. But I do want him to be healthy. And I think we were doing great before but just back from the endo this time around about a week ago as you're listening now, his lowest A1C ever. And the time before that was his previous lowest A1C ever. And the best part is he's doing less work. And I am I swear I'm doing less nagging. If you ask him, he will tell you otherwise. But I promise you it's true. So I'm thrilled to talk about control IQ. I'm really excited that all of the pump companies are moving in this direction, it would be amazing for everyone to have access to this kind of technology. That is a discussion for another time. Probably Another little bit of personal news, Benny got his driver's license. I know I can't believe it either. Here in North Carolina, you get your permit. If you want at 15, you can actually take drivers at 14 and a half. But you get your permit at 15. And you can get your license at 16 right now, because of COVID. They are not even doing road tests. I know isn't enough bananas. But what happens is you get your basically your junior driver's license, you can't drive at night, which is what he would have been issued anyway, if he passed a road test. And they cannot move on to the next level the after nines until they get a road test. In fact, I believe what he has expired in six months without a road test. So he'll have to take one. He's a decent driver, you know how superstitious I am. So I'm not going to say more than that. But I'm confident we've got a whole system with diabetes we have we've had these discussions, and he's just so excited about it. And I'm really thrilled for him that this step has taken but as a parent, and for those of you who have known him since he was two, how did this even happen? Okay, we're gonna talk to Molly from Tandem in just a moment. But first Diabetes Connections is brought to you by Gvoke Hypopen and almost everyone who takes insulin has experienced a low blood sugar you know, that can be scary, but a very low blood sugar. It can be really scary, and that's where Gvoke Hypopen comes in Gvoke is the first auto injector to treat very low blood sugar. Gvoke is pre mixed and ready to go with no visible needle. That means it's easy to use. How easy is it, you pull off the red cap and push the yellow end onto bare skin and hold it for five seconds. That's it. Find out more go to Diabetes connections.com and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma visit Gvokeglucagon.com slash risk. My guest this week is the manager of clinical outcomes at Tandem diabetes care. And she lives with type one, Molly McElroy is I am grateful to say a frequent guest. And if you're a longtime listener, you know, her career and her life has been shaped by the technology that is now control IQ. That's not really an exaggeration. She was one of the first to test out an artificial pancreas system. And she changed her career path because of it. And my first interview with Molly was in 2016, when type zero technology announced their partnership with Tandem, and I will link up the previous episodes, we've done a bunch with her all about this software, you can find those links, as always, in the episode, show notes, wherever you're listening, the app should have show notes. If it's difficult to find, just head over to Diabetes connections.com. And every episode now has a transcript and lots of links and notes to help you out. Please stay though, to the very end beyond the interview because there are a few questions Molly had to check on. She couldn't answer at the time. And they sent me that information. And I will give that to you later on in the show. Of course, as I said, there's a transcript so you can check it out that way as well. Molly, thank you so much for coming back on to talk to me a year ago, you and I spoke about Control IQ it had basically just been approved. And you were kind enough to jump on that in late December. So thanks for coming back on. Molly McElwee Malloy 6:26 Oh, you're welcome. I'm very excited to be back on this. Stacey Simms 6:29 Yeah, well, lots of lots of questions, of course, from listeners and from me. But let's just start by taking a moment to kind of reflect what's the last year been like for you guys at Tandem? Molly McElwee Malloy 6:39 You know, it's been really crazy great is the best way I could describe it. There's a lot of excitement for control IQ, and rightfully so. And there's a lot of the feedback via social media about people's experience. And it's been really, overwhelmingly positive. It's also been kind of emotional, because this has been a rough time for everybody, right? Like last eight months or so that we've been in. I've been calling it seclusion. But it's, you know, everybody working from home. And that's been a really high stress situation, particularly for people with chronic disease, and myself included. So I've really been grateful that control like has been out and approved. And a useful tool during this time. Because just you know, stress influences glucose. And so it's been a big, huge help for a lot of people, particularly during this time. So it's been crazy great. And it's been busy. But sure, I would love to experience control, like you and all the interaction with healthcare providers in person. But it's been great just talking to people on the phone or on video or teams. And it's been really good that we've been really busy. Yeah, sure. All right. Stacey Simms 7:43 So what I'd like to do is take a look back, get some information from you about control IQ, and then kind of take a look forward because we know the product and the product line is evolving. So let's just start by asking you, what have you learned about control? IQ obviously had all the study information. But looking back at 2020? How are people using it? How is it working out? What is the data telling you, Molly McElwee Malloy 8:07 you know that this is the funniest thing, and this is not something that you can plan or you could guess but our real world data is better than our clinical trial data. And I'll say that again, because it's just, it feels a little crazy to say that out loud, because that's usually not the case, right? clinical trials are very well managed. And you know, there's protocols and everybody's sticking to stuff. But it turns out when you put this put control, like you in the real world where people are experiencing significant hyperglycemia, or even hypoglycemia, it does even better. So I mean, the clinical trial population was pretty well controlled, right? And we were still able to improve on that. But when you put it into the real world where people are doing, you know, they're real people, they're doing all kinds of real things, and we're able to get even better outcomes. It's surprising. It's awesome. It's a really cool experience, and definitely unexpected. Stacey Simms 8:59 Yeah. So let's dig into that. Can you tell us in terms of I guess you're measuring things like time and range? Can you give us a little bit more information about what you mean by they did better? Molly McElwee Malloy 9:09 So for one, it's it's time and proven time and range, right. So in our pivotal trial, we had about 11% over baseline improvement on time and range from a very good well control group, which is awesome. But in real world, it seems to be closer to 13%. Sometimes a little bit better. We've got some results from D Q&A which is a third party vendor that does research and they're affiliated with Diatribe. And they did some survey results about time and range by insulin pump therapy and it's been really cool to have like a 33% getting 81 to 90% time and range 31% getting 71 to 80% of 11% getting 91 to 100% which is crazy. So you know all of that And it just is amazing because it really does. It whips up on the competition. But it also just shows that, you know, this works even better in the real world. Stacey Simms 10:08 Any idea why? I mean, are people using sleep mode? Are people figuring out different ways to use it better? I'm just curious what you think might be happening? Molly McElwee Malloy 10:19 Yeah, I don't think it's the using sleep, you know, 24, seven or something. I think using a sleep schedule has been very successful. But I think the reason for this is that largely, and not everybody was correcting aggressively, right. So while there are that subset on Facebook, or social media that are trying to get that, you know, super, super tight range, there are plenty of people who, between meals, we're not correcting, and now they're receiving those corrections. And there's some evidence that we were able to publish. And I think we showed an ADA, but that persons with type two diabetes are benefiting from this. And that's because they're getting the corrections between meals, which we don't typically ask people with type two diabetes to do that. So getting that tighter control is really, really helpful. And again, not everybody does that. Stacey Simms 11:11 Yeah, I have one of those people in my house, who not everybody does that. I mean, we I tease Benny all the time, and he knows that I I talk about him on the show like this, he will happily, let me say that Control IQ has helped him significantly because he often boluses after he eats or forgets to bolus or didn't correct between lunch and let's say, bedtime, even if he gave himself insulin for dinner. And it really has made that burden lighter. And it's certainly not perfect. I have friends whose kids are much more engaged with their diabetes, I guess is a way to say it where they, they will you know, they'll bolus every two to three hours, or they're looking at their watch every 20 minutes. But he's never been like this. And it's really improved his quality of life. Because I'm not, I'm not willing to make him do that. Molly McElwee Malloy 11:57 Well, and if you think about the long term, decrease the complications because of this going on in the background is sort of automating this. I mean, that's a huge improvement and quality of life. One of the things I'm really excited about is to watch this going forward to see how we can measure decrease long term complications from this, you know, the not just like seeming variability, but with those micro macrovascular complications. But this is long term complications from diabetes from having high blood sugars. And, you know, that's just something that we've never been able to really control for before. So this is going to be very cool to watch and see how it plays out. Stacey Simms 12:36 No doubt. All right. We've gotten a little bit inside baseball, but I think most people listen to the podcast will understand some of the shorthand, I'll try to explain as much as I can. But if there are things that we mentioned, that you are not understanding, I'm going to link up lots of stuff in the show notes. But one of those things is sleep mode. And I just want to take a second to talk about that. Because you and I, when we talked last year, you said that there were some people using sleep mode, which will adjust basal but will not give you boluses, they were using a 24 seven in the studies, you called them sleeping beauties. And there have been many, many people in the real world settings who use that we do not we actually don't laugh at me, we stopped using sleep mode for sleep. Because as great as it was working for Benny with what you called a seclusion, we found that he was eating at interesting hours, you know, 1am 3am I mean, he went full nocturnal for about a month there way back when I want to say like June or July. And so we turned off sleep mode because we needed that bolus power at weird times. So it's been really funny how you can kind of use the system in a way that works for you. But getting back to my question, what have you learned about sleep mode? Is there anything you can share with us? We'll get her answer to that question and what she can share in just a moment. But first Diabetes Connections is brought to you by Dario health and we first noticed Dario a couple of years ago at a conference. And then he thought being able to turn your smartphone into a meter was pretty amazing. I'm excited to tell you that Dario offers even more now, the Dario diabetes success plan gives you all the supplies and support you need to succeed. You'll get a glucometer that fits in your pocket, unlimited test strips and lancets delivered to your door and a mobile app with a complete view of your data. The plan is tailored for you with coaching when and how you need it and personalized reports. Based on your activity. Find out more, go to my daurio.com forward slash Diabetes Connections. Now back to Molly answer my question - we were talking about what Tandem has learned about the use of sleep mode? Molly McElwee Malloy 14:44 Yeah, yeah, there's lots like I've learned I just want to share quickly that I've seen in looking at lots of reports with lots of health care providers that during what I've been calling seclusion or hibernation this this COVID time that people schedules are very, very different. They're eating at different times. And that sleep, as originally intended right is not what it looks like during this time. So there's a lot of people who have benefited from not using sleep when they're eating right through the night, or snacking, or staying up extra late or, like really altered schedules, right. So we've seen that some people have turned sleep off, and that's been successful for them. So sleep, what sleep is doing is it's based off of fasting metabolism. And it's using this 112 to 120 sort of target. And it's really, it's a really tight range. But it's doing this through modulating basal. And the reason it's only modulating basal and not giving corrections is because someone is sleeping, and they're not, we're not anticipating postprandial spikes, and we're not anticipating exercise or activity. And so it's really, really meant for when you are kind of static, and you are sleeping. Now, that said, Not everybody's sleeping normally, particularly during COVID. And so it doesn't always work that way. And then some people want to have sleep 24 seven, so that the basal is modulating, but that they're responsible for the corrections. And if you're willing to glance and see if you need a correction every two hours, that can work really well. But if you want to alleviate that burden, right, then, then sleep maybe isn't the best thing for you to use 24 seven, so it really depends on the user and the user's interaction. But the other thing I wanted to mention about sleep for users is that one of the things that we've noticed, and how people are using sleep is that if their schedule have has changed drastically with COVID, that they may need to reevaluate that sleep pattern as to what time it is. So for instance, if someone previously wasn't snacking at 10pm, and now they are starting sleep a little later may make sense because they may need an additional correction before going to that, you know, that's one circumstance I've seen a lot of. And another one is, there are some patients who can't go to bed with a positive IOB. And what I mean by that is, you know, going to bed with any insulin on board that is not related to carbohydrates, right, so for correction, and for them starting sleep sooner, and you know, obviously not eating right before bed, makes sense, because they're not getting any corrections before bed. So there's sort of really two very different types of insulin sensitivities, right, the person who's eating and then needs the additional correction, who may want to start sleep later. And then the person who isn't eating after dinner, and really doesn't want any additional corrections before they go to bed, starting it sooner. So I've also seen that very interestingly playing out in the public realm, and it's it's interesting to see how people are using it to make it work for them. Stacey Simms 17:44 Yeah. What about exercise mode? Have you learned anything about how...
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Rob Howe: First Thoughts On Medtronic's 770G (and a lot more!)
01/12/2021
Rob Howe: First Thoughts On Medtronic's 770G (and a lot more!)
The Medtronic 770G pump was released in the United States just a few weeks ago and Robe Howe is one of the first to use it. Rob shares his first impressions and tells us what he'd really like to see in pump technology. (Rob is a paid ambassador for Medtronic, but they did not clear or review his comments for this interview). Rob & Stacey spend a lot of this episode on other issues, talking about whether people with type 1 are "disabled" and what it means to use that word. Rob talks about achievement bias (and explains what that involves) and a lot more. We also find out about his fun modeling gig with Express and about his COVID-adjusted wedding in 2020. , including our in-depth discussion about the 770G and what else is on tap. In Tell Me Something Good – legislative action, a diabetes blog gets a shout out and a new tip makes a difference for a site location. And Stacey makes her predictions for 2021. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Tell me something good links: ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode Transcription Stacey Simms 0:00 Diabetes Connections is brought to you by Dario Health. Manage your blood glucose levels increase your possibilities. By Gvoke Hypopen the first premixed auto injector for very low blood sugar, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. Unknown Speaker 0:22 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:28 This week, Rob Howe is one of the first people in the US to use the new Medtronic 770Gpump. We'll talk about that. But our conversation got a lot more personal, including a discussion about whether most people with diabetes consider themselves disabled and everything that goes along with using that word. Unknown Speaker 0:47 I want to say like I Rob Howe, professional athlete, the guy who's goes and speaks and is like, you can do whatever you want. I identify as disabled, I am disabled, I have a disability. That doesn't mean that I'm not going to wake up tomorrow. And if my blood sugar's high, I'm just gonna quit and be like, you know, sayonara team Stacey Simms 1:01 Rob is also a podcaster. And he turned a few questions around on me, we went a few places I wasn't expecting, including my hard “no” stance on Disney guest passes from years ago, and a lot more. And we do talk a lot about the 770G as well. In Tell me something good legislative action, a diabetes blog gets a shout out and a new tip makes a big difference for site location. Plus, at the very end of the show, I'm going to do my predictions for diabetes in 2021, technology, community, and more. Stacey Simms 1:32 This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome back to another week of the show. I am your host, Stacey Simms, and we aim to educate and inspire about diabetes with a focus on people who use insulin, my son was diagnosed with Type 1 14 years ago, my husband lives with type two, I don't have any type of diabetes. I'm the broadcaster. And that is how you get the podcast. I released an episode on New Year's Day about the COVID vaccine. And we've had a big response to that the episode was about health care providers with type one who had received the very first batches some of the first people in the US to get that first of two COVID shots. But the response was mostly people wanting to know where they fall in the priority order for receiving it. Dr. Ponder Dr. Steven Ponder was in that episode. And he's an endocrinologist in Texas. He had been trying to get Texas to allow type one into the higher tier. But it looks like this is going to vary state to state, I would urge you to jump into our Facebook group. It's Diabetes Connections, the group and I'm just start a thread. Let's try to get everybody up to speed whatever state you're in, link up the health department look up a news story that you know of let us know what's happening where you live. Here in North Carolina, they're talking about chronic conditions for one of the phases but it's not clear if it's just type two with type one will be included. As Dr. Ponder said, How are they going to check? Right? Do we really want the people giving the vaccines to have to worry about you know, give me your paperwork or your type two type one. Where's your doctor's note? I mean, it's already so much less efficient than we all had hoped. I do think they are making good progress. As I'm taping this at the end of the first week of January. Here in North Carolina, where I live, they have announced that they will be using the National Guard to help out which I think is terrific. And as I mentioned with a husband who's got type two, with my 16 year old who has type one who is eligible for the vaccine, we are going to watch closely to see when it is our turn. But again, I'm hoping we can get a big Clearinghouse going in the Facebook group with information with sourced information about when and where the vaccine will be available, where you live. My talk with Rob Howe about Medtronic and this talk really did turn into something more. It's not a typical interview for the show. I think we'll get to that in just a moment. But first Diabetes Connections is brought to you by Dario. And one of the things that makes diabetes management difficult for us. It really kind of annoys me and Benny, it's not really the big picture stuff, right? It's all the little tasks adding up. Are you sick of running out of strips? Do you need some direction or encouragement going forward with your diabetes management and with visibility into your trends help you on your wellness journey? The Daario diabetes success plan offers all of that and more. No more waiting in line at the pharmacy. No more searching online for answers. No more wondering about how you're doing with your blood sugar levels, find out more go to My Dario dot com forward slash Diabetes Connections. My guest this week has been on the show before with a very different focus. Rob Howe joined me two years ago to talk about so called Walmart insulin which he used for a while as kind of an experiment if you want to hear how it went. I will link up that episode from 2018. Just go to Diabetes connections.com click on this episode or the show notes wherever you're listening We have a pretty robust search on the website as well if you prefer to search it that way. Rob is the host of the podcast, diabetics doing things. He is a former Washington Generals player. That's right. He's the bad guy. He was on the bad guy team against the world-famous Harlem Globetrotters. And this year, Rob became a model in a very cool campaign for Express and he got married. So Rob has a lot going on. And we've talked about quite a bit of it here. There is also a video of this interview over on our YouTube channel on Diabetes Connections over on YouTube, if you prefer to watch it's kind of fun to be doing more video interviews, let me know what you think about that. In addition to the audio, Rob is a brand ambassador for Medtronic, and he started using their newest pump, the 770G in December, we talked about that, and then had a conversation about everything from the word disability to why I never got Benny, a guest assistance pass at Disney. In fact, I put my foot down and said no to what he calls achievement culture within the diabetes community. Always great to catch up with Rob how from diabetics doing things, podcasts, and so many other things in the diabetes community. You become the go to emcee, I see you all over the place at virtual events. Thanks for jumping on. It's great to talk to you again. Rob Howe 6:13 Yeah, thanks so much for having me. I've become what I call, and literally no one else says this except me. I'm the host with the most Insulet on board. So yeah. Stacey Simms 6:23 Oh, I'm gonna steal that the next time I introduce you, I'll make sure to say that please Rob Howe 6:26 Please do. Rob Howe 6:28 I love it. Well, Stacey Simms 6:30 listen, we've got a lot to talk about today, I want to start off by just jumping in because the latest thing for you really has been not a change of technology. You've been a Medtronic guy for a long time. But you've got the latest version of Medtronic pump. So tell me, when did you start using the 770? Rob Howe 6:49 Yeah, so I am very fortunate. I've worked with Medtronic for a long time. And I've been a patient of Medtronic for even longer. So today, as of recording, it's December 16. And I think I've been on the Medtronic 770Gnow since December 1, right around there. So it was in the first wave of of Medtronic, folks, employees Ambassador group to get access to the new pump. And it's exciting. I mean, I think for me, I've been on the 670 g now for almost three years. So you know, one of the criticisms of the new pump is that it really isn't very different, in turn from a technological standpoint, except it does have what we've always been very critical. And I mean, we as the diabetes, greater community of the 670 was that there was no Bluetooth connectivity to the phone. So I think this is Medtronic response to say, Hey, we hear you we got to have Bluetooth connectivity. And it's great. It actually, the app is super intuitive, the mini med mobile app and it has your basically your sensor glucose like you would normally see on your pump display, but it also has your 24 hour time and range. So just a quick little swipe, you can get over there and see your your 24 hour numbers, which is kind of nice, especially if you've had a really good day, you can see that you know those high time and range numbers. So it's exciting. And you know, I think for people who are, you know, really into the nitty gritty, it's also a new transmitter for the sensors. So it's still the Guardian three sensor, but a new GL three transmitter, which just has a few of the, you know, annoying, calibration tweaks that some people have, I think more vocal people than I have have, for sure lamented. So the the new transmitter is excellent and has fixed a lot of the challenges from the early days. Stacey Simms 8:26 We talked to Medtronic a couple of weeks ago, and I'll link up that episode in the show notes here to go through all of the features and what's coming next. But it really is interesting how so often these companies and it's not just Medtronic, I would kind of compare it to Omnipod dash right so they have one version, then they almost have a stop gap, which has some improvements but isn't the big shiny thing that we're waiting for you know the if you're looking at the technology so carefully, which will be the 780 which is out in Europe and will be out soon. But you know, I have heard a couple of people who have used Medtronic for a long time like you have say the phone stuff would be nice but I don't really need it. And now that you have it, you really look at it more i mean i don't have diabetes and so I'm trying to get myself from following Benny so often to not looking at it 24 seven, but was it really that different for you to kind of just look at your phone more than your pump Rob Howe 9:15 right now. I'm operating mostly from home so there isn't a you know, work meeting where I would feel better about pulling the phone out versus taking the pump out of my you know, pocket and I am an insulin pump in the pocket person so I don't wear like a holster or anything like that. And obviously Medtronic pumps have tubing, but I think it's nice to just be able to you know, you're on the phone all day all day. Anyway, I'll admit I spend a lot of time on my phone and being able to click over in the night. You know, I think that's been the time that I've used the app the most when you know in when I'm laying in bed, Stacey Simms 9:47 I think it's huge to have it on the phone. My kid is a pump in the pocket kid too. And he would never look at it. If he didn't have to. He's on the phone and it would you say maybe a couple of directions. He it would be really a big deal. If he suddenly lost that which he hasn't even had for that long, right? Well, anyway, you get used to. Rob Howe 10:04 Exactly. And I think that's where I think as consumers, and this is sort of my you know, before getting more and learning more about what goes into diabetes technology from a FDA approval standpoint, and all of the sort of hurdles that they have to go through, you know, I was sitting there streaming a movie on my iPhone on an airplane, and I'm like, wow, if I can stream a movie on my iPhone on an airplane, we for sure should be able to look at your blood sugar numbers on a phone. But I'm very much like Benny, I love the phone, very familiar with the interface, I use it quite a bit. So I think, you know, in terms of having that convenience, it's just so nice. It's kind of just takes away, you know, I think Medtronic has really done a nice job in past years. And also going forward of really relieving that mental burden and making diabetes integrated into your life. And this is definitely something that makes diabetes just more integrated in the way that you already use technology, the way that you're already on your phone. And I can get a push notification. Now my alert on high if I'm, you know, I got my high alert set at 160 get the alert on high, it pops up in my phone, just like a normal notification. And I can take care of it then. So yeah, I really love it. And I think that's kind of like what you said with Benny, you get really used to it really quickly of having it there and having those numbers all the time. So it's just nice to have it a little bit more integrated into our everyday life. Stacey Simms 11:15 Are you a big auto mode guy? Do you use the features of the 670. And now the 770 Rob Howe 11:21 I am I stay in auto mode. I'm a big auto mode guy. And I think the criticisms that I see of it online are fair, and it's not perfect. And I think Medtronic has done a great job of talking about those, you know, initially, this was like 1.0 of the hybrid closed loop systems, you know, so the algorithm is now in technology world is a little dated. But now, like you said, mentioned 780 coming soon, in the US. You know, the next version of that, I think is really exciting. But for me, I'm an auto mode guy. And I think the the biggest example I'll give for listeners is I love to play golf, I have a weekly golf round that I play on Sunday mornings, and I set it on auto mode. And before auto mode, I would go out and you know, my basil would be what it was and I have to set a temp target or attempt basil and you know, even before cgms I just basically have to have gummy bears stashed in my golf bag. And on auto mode. Thankfully, you know, I go in with no insulin on board in the morning if my morning starts off really smooth. And I can go through my entire round walking or in the cart and not have to worry about correcting and not have to worry about high so it's it's really nice. I love auto mode. That Blue Shield gives me a lot of confidence. Stacey Simms 12:25 That's awesome. It's funny though, looking at as we're recording this on video I can see into your house is basketball stuff all over the place. Now I know you're big basketball player. We've talked about that we talked in the past. So I'm interested that you brought up golf and rather than basketball. Rob Howe 12:38 Well, you know, I'm aging gracefully, Stacy. Like, you know, I think I still love playing basketball. And I think that's one thing that sentimentally I think there's been so many terrible things that have been taken from us because of COVID. And the thing that's been really eating away at my heart, and my soul is not being able to play basketball and because it's just not safe. And I think in Dallas, especially we have so many cases and I've been able to do some training in a gym, by myself wearing a mask, but I just missed competing and I think golf, you know, you're competing against yourself. So it kind of scratches my itch a little bit. So that's been my COVID pivot. Stacey Simms 13:14 That's awesome. I've been playing golf since I was 22. So I'll take you out sometime when we got Rob Howe 13:18 ready to say no more. I'm ready. Stacey Simms 13:22 You know, one of the things that really made me smile in the last couple of weeks was that terrific video you posted. Your it was it was announcing the partnership you have with Medtronic now but the video itself was so great. It was you know, if you haven't seen it, we'll link it up. How would you describe that like an athlete grabbing a sponsorship or getting recruited for a team? Rob Howe 13:42 Yeah, you know, I, I was stuck on this concept of signing day. And this announcement, this announcement kind of felt like that. And for me, you know, I've worked with Medtronic for a number of years as an ambassador as a consultant. And now kind of deepening that partnership into a more formal role. It just came to mind. And I thought, you know, this is true to who I am as an athlete, and seems like a fun way for and you know, that's a big part of what we're working on together is doing some outside the box, maybe not traditional Medtronic type announcements. And I would classify this as sort of in that realm. And I'm just very fortunate that my team and Medtronic is so on board with hearing sort of outside the box ideas. And so getting to produce this fake press conference about my signing day and learning that there are no Medtronic hats and having to get a Medtronic hat made for me to put on so now I have like the one on one of one Medtronic cat, which I love. It was really cool. And the response was great. And again, I just I'm glad that my team didn't roll their eyes at the pitch. They were like, Oh, yeah, this actually sounds great. We'll we'll do this. And I can only imagine as it went through legal what legal was thinking of just reviewing that video, so very fun. That is funny. I Stacey Simms 14:48 think I have one of the remaining animus shirts left in existence from what I used to do appearances for them. Rob Howe 14:54 Yeah, you gotta gotta save that merge. It's like it's retro. You know? Rob Howe 14:57 That's really funny. Stacey Simms 15:04 Right back to Robin just a moment, but first Diabetes Connections is brought to you by g Volk, and almost everyone who takes insulin has experienced a low blood sugar and that can be scary. A very low blood sugar is really scary. That's where Jeeva kaipa pen comes in. It's the first auto injector to treat very low blood sugar. chivo hypo pen is pre mixed and ready to go with no visible needle. That means it's easy to use in usability studies, 99% of people were able to give GMO correctly. I'm so glad to have something new, find out more, go to Diabetes connections.com and click on the G book logo. g Vox shouldn't be used in patients with pheochromocytoma or insulinoma visit g VOCA glucagon comm slash risk. Now back to rob, and he is talking about new technology that he's looking forward to. Rob Howe 15:52 I'm very excited about the integration of the phone as the software back end to the pumps and the devices. I think that adding diabetes technology to the Internet of Things is a huge milestone in healthcare. It's a huge milestone for people with diabetes. And it's just going to make this whole user experience more intuitive. I think the DIY loop community has shown how you know how powerful it can be when technology and people helping each other...
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Ypsomed: Bringing A New Insulin Pump (and Partnership) to the US
01/05/2021
Ypsomed: Bringing A New Insulin Pump (and Partnership) to the US
For the first time in several years, a new pump company is making a reach into the US market. Meet Ypsomed, the Swiss company teaming up with Lilly Diabetes. Their device, The YpsoPump, is available in Europe and Canada and has some unique features. But when it launches in the US, likely in 2022, it will only use Lilly insulin. That kind of proprietary design is unique and is raising eyebrows. Stacey talks to Simon Michel, Ypsomed's CEO (she'll talk to Lilly in a separate interview airing in a few weeks). In Innovations this week, what is an inverse diabetes vaccine? And could you be part of a trial for one? This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode Transcription: Stacey Simms 0:00 Diabetes Connections is brought to you by Dario Health, manage your blood glucose levels increase your possibilities by Gvoke HypoPen, the first premixed auto injector for very low blood sugar and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:22 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:28 This week, my first interview with Ypsomed, the Swiss company teaming up with Lilly diabetes to bring a new pump to the US. A few features make YpsoPump unique, including their infusion sets which can help to cut back on insulin waste. Simon Michel 0:43 Yes it's terrible. It's throw away so much insulin all the time. But you can disconnect Of course from your body, you change a cartridge, you put it back on. And that's how you don't lose your insulin in the tube. Stacey Simms 0:54 That's Ypsomed CEO Simon Michel, we talked about more features and he answers questions about the partnership with Lilly in innovations. What is an inverse diabetes vaccine? And could you be part of a trial for one This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to our first full episode of 2021 Happy New Year. I'm so glad to have you here. Here we go. Another year of the podcast. My goodness, I'm your host, Stacey Simms. And as always, my goal here remains the same. We aim to educate and inspire about diabetes, with a focus on people who use insulin. any of that line sounds a little bit different if you're used to my intro where I talk exclusively about type one. But you know, more and more people with other types of diabetes are listening as the show is growing. And I think that's really important to acknowledge and to kind of dial back and see who we're serving here. My son was diagnosed with Type 1 14 years ago, my husband lives with type two diabetes, I do not have any type of diabetes. I'm the broadcaster in the family. This year on the show, I'm going to be focusing a lot on new technology, I think the delays that we saw in 2020, because of COVID are going to result in a lot more news than was originally planned or expected for 2021. You know, a lot of that innovation, a lot of those FDA submissions and approvals are getting stacked up, especially as we're looking at the second half of 2021 and into 2022. So you know, why not get ready. And you all have told me that you are very interested in episodes about technology. In this episode, we're gonna learn all about Ypsomed and their plans for the US market. I have an interview scheduled with their US partners, Lilly diabetes, to talk more in depth about the proprietary nature of this pump. You can only use Lilly insulin in it in the United States. That's interesting. We talk about that here in the interview. And then there are a bunch of questions that Ypsomed, really cannot answer that are more for Lilly. So I'm excited. I'll be talking to them soon. And just in the technology front, you're going to hear from the folks from Tandem. I've got a Medtronic interview, I'm excited to share with you. And as we look forward, of course, I will still be doing the personal stories interviews because I love those too. But please let me know if there are companies that you would like to hear from this year, and we will get them on and yes, Big Foot beta bionics. I'll be talking to everybody. Okay, Ypsomed in just a moment. But first Diabetes Connections has a new sponsor this year. Yes, I am so happy to welcome our newest partner Dario, I cannot wait to tell you all about them. You know, we first noticed Dario a couple of years ago at a conference and Benny thought being able to turn your smartphone into a meter was pretty amazing. I'm excited to tell you that Dario offers even more now, the Dario diabetes success plan gives you all the supplies and support you need to succeed. You get a glucometer that fits in your pocket, unlimited test strips and lancets delivered to your door and a mobile app with a complete view of your data. The plan is tailored for you with coaching when and how you need it and personalized reports. Based on your activity. Find out more go to my daario.com forward slash Diabetes Connections. My guest this week is the CEO of Ypsomed. And if someone is a leading maker and developer of injection and infusion systems, pumps and pens around the world, and not just for diabetes, as you'll hear, they've been in the space for a very long time. But we're talking to them because I know I have listeners around the world and I appreciate you all so much and many of you may have experienced with this pump, but we are us centric and Ypsomed announced that it is partnering with Lilly diabetes to bring their pump to the US market. That announcement raised some eyebrows when it came out this fall because it will be the first pump in the US that will only be used With one type of insulin that can only be used with one type of insulin, and the US market is the only place where that will happen, this pump will be available in other countries that already is with different types of insulin. In other words, to be clear, you'll only be able to use Lilly insulin, such as human log in the US, if so, mid pump. Now, Ypsomed has been around for a long time before this, of course, many of you who've been in the space for a long time will recognize some of the technology names and the brands that come up here. I was really excited to talk to the CEO, of Ypsomed Simon Michel, for the very first time, he's been the CEO since 2014, at the company since 2006. And as you'll hear, he kind of grew up in the company. And here's our conversation. Thank you so much for spending some time with me. I'm excited to have you on the show and learn more about this. Thanks for being here. Simon Michel 5:53 Thank you, Stacey. I'm to give us a chance to talk and explain to what we're doing. Yeah. Stacey Simms 5:58 So let's just start with the basics if you could tell me about Ypsomed because we're really not that familiar with it here in the US. So if you wouldn't mind taking me through. Let's start with the the company history before we talk about the product because you are not a new company. You've been around for a while. Simon Michel 6:14 Yes, I'd love to Absolutely. Thank you. So my father in 1985. Around the time when MiniMed founded the first company, the first pump in in Europe Disetronic. Some of you might still remember the name. And we were quite a successful pump company. And we sold the pump company at the Disetronic to Rouche in 2003, Rouche is still a name in Europe, roughly 80,000 patients on the product. But as they didn't really innovate anymore, we decided to go back into pumping in 2010. Stacey Simms 6:44 When you went back into the pump business, what was the product at the time. Simon Michel 6:48 So we did two things in 2010, we signed with Insulet. We took over the DC distribution of the Omnipod in Europe. So basically build up the business for for Insulet. between 2010 and 2017. When we've given it back to them, and the parallel we have started to develop our own YpsoPump so in back into tubed pumping and thought what can we do better? What can we do better in terms of pumps? What is the community needing tomorrow? versus the old Disetronic pumps, what can we do better? Stacey Simms 7:17 What did you find that you could do better? We're going to talk about what the pump looks like and what it does, but big picture. Simon Michel 7:24 So when we look at Ypsomed today for a whole, we make roughly 400 million in revenue, we grow at roughly 15% per year. So quite a healthy company despite of COVID we still grow and we have two businesses and it's quite important to understand we do both pumps and pens. today. I'd say you're by far largest pen and auto injector manufacturers in the world. We close roughly seven out of 10 deals in the pen space that's pens for insulins, solostar pen some of you might know it's also many of the Chinese pens, pens all over the world but all the injectors for autoimmune diseases migraine Astham, osteoporosis, So this is our device business. And the other half of our company the other 12 million is where we are very invest in pen needles in blood glucose monitoring and heat pump systems. And this we sell in Europe very successfully now for the past years in Europe and our own brand was owned subsidiaries and own people. Stacey Simms 8:20 I'd like to know more about maybe we'll talk more about the pens a little bit later on. But when you started talking about the pumps and the systems that you started making in the 2000s I'd love to get back to what was lacking in the pump market. What did you think needed to change that you could do differently and better. Simon Michel 8:37 So a couple of things you know, I mean to the pump was very much medical device centric. It's a very strong technic focus site is designed by engineers, great engineers from America from Switzerland from Germany, great people that think about what features we can add. But in the end of the day, we use these devices daily we don't really want to know and hear and feel and about this device. So number one criteria for us was to make it small and light. Ypsopump is roughly 80 grams. I don't know what this is in American weight measures but it's a it's a roughly half the weight of a Medtronic pump. I mean that gives you some kind of feeling very important, you wear it all day. The other thing is simplicity. We don't need all those features. I mean if you look at the at the iPhone, some of these phones they have many features but they only show the features that you actually use. So really simple in a way what is really required you don't need eight basal menus, you need two or three. Some might use but the big, big majority of us don't need this vast opportunities. Stacey Simms 9:38 When I look at the the pump that we're talking about today. It does look tiny, it does look light and I did the I had to convert as well using my iPhone and that weight that 80 gram weight is point .176 pounds so very, very, very light. It looks like it's smaller, it looks like obviously it's lighter and doesn't have a touchscreen. It Looking at his buttons? Simon Michel 10:01 Yes, absolutely. So it has a touchscreen. It's used like your mobile phone, you have one button to turn it on and off. That's basically it. But other than that you have a regular touchscreen, which works at night perfectly. Stacey Simms 10:13 It's basically white on black. So it's a very good contrast that you see, is the pump controlled by phone? Is it controlled remotely? Or is it still used as the touchscreen? Simon Michel 10:22 So yes, very important. We are a compared to other manufacturers, we are a iPhone app centric company. So you everything you do we do from your phone. So you have your Dexcom data on your phone, you give your bolus from your phone, you do your basal rates from your phone, that's that's our strategy, we have the firmware updates that go via phone onto the pump and back. It's very much app centric. The reason is we can be much, much faster and adding elements and adding new functions, new features, you don't need to change the device, you know, you don't want to change device or every year, simply too costly. This is why we set it up that way. Stacey Simms 10:59 So that's a huge deal. Because here in the States we're all waiting for, you know bolus by phone, we're waiting for pump control which Tandem and maybe Omni pod will have and hopefully 2021. But just to be clear, you have that already. Simon Michel 11:12 So we have the apps and the whole app control features are now launched in q1 in all over Europe. Yes. All the other things integrate the integration. The data this is this is in place the apps is in the market. But the integration of this bolus button and the CGM together is Dexcom is launched now in the beginning of ‘21, q1. Stacey Simms 11:32 But let's talk I brought up the United States market. Let's talk about this partnership with Lilly, what is that partnership going to look like? And we can talk about consumers in a moment. But what will that partnership look like? For you all? Tell me about the system? What will the Lilly IP so mad Dexcom system look like when you bring it to the States? Simon Michel 11:52 Well, basically, for my relationship, it's simple Ypsomed innovates and be manufacturer really supports in innovation and does the marketing and sales it was for us crystal clear from the beginning Ypsomed is a European company, it would be very tough for us to enter the big US market. So if you're looking for a partner, and luckily Lilly was looking for a pump, so we found each other a year ago Ypsomed would be the is the comet actually registered a product to the FDA, the expected approval in the second half of 22. But it's a fully branded Ace pump. So Dexcom is integrated as a bolus calculator calculator, the remote bolus function as a Type Zero controller that will follow by mid 23. And it is a Lilly product from a user perspective, but it's manufactured in Switzerland. Stacey Simms 12:35 It's so interesting to hear you say these things that a few years ago would have been very foreign to us. I think my audience is familiar now the ACE designation, Type Zero, which is the software that's inside. It's incredible, just to take a moment and think how far things have come Simon Michel 12:52 across fast pretty fast. Yes, Stacey Simms 12:53 goodness. But to be clear, Type Zero is the I would call that a hybrid closed loop software. So that's the software that will in very plain terms, work with the Dexcom to increase insulin or decrease insulin to try to keep people more in range. I just want to be crystal clear about that. Simon Michel 13:11 None of those days. Absolutely. I mean, I mean, Type Zero belongs to Dexcom. And of course Type Zero is further working on on new versions of the controller. It's a constant enhancement. At the moment, the features that you described are the ones it's the low suspend function. It's the hybrid adaptation of the baseline rate. There's the micro bolus element, there are a couple of features which have one goal to bring us to bring patients with type 1 diabetes in in time and range Stacey Simms 13:35 the ACE designation, and I get a little confused on this. So I apologize in advance. That's all about interoperability. Right That's about making these new technologies compatible with other devices. Right back to our conversation, but first Diabetes Connections is brought to you by Gvoke HypoPen, and almost everyone who takes insulin has experienced a low blood sugar that can be scary. A very low blood sugar is really scary. That's what Gvoke HypoPen comes in Gvoke HypoPen is the first autoinjector to treat very low blood sugar Gvoke HypoPen is pre mixed and ready to go with no visible needle means it's easy to use. How easy is it, you pull off the red cap, push the yellow end onto bare skin and hold it for five seconds. That's it. Find out more go to Diabetes connections.com and click on the Gvoke HypoPen logo. g book shouldn't be used in patients with pheochromocytoma or insulinoma visit gvokeglucagon.com slash risk. Now back to Simon talking about interoperability and the East controller. Simon Michel 14:40 Well, I mean, the great thing is that it's much easier to add different devices or different controllers to it. Once you have the ACE type designation you can actually change or upgrade a controller as it only is doing a lot of research on on controllers. So think about the might use their own controller in the future. Together with their new insolence. You can Think about situations where you can do better therapy better time and range when you combine new insulins with new controllers to actually use the insulin data to make better controllers. And also on the sensor side, it's possible that other sensors would come to the system at the moment, we love our partnership with Dexcom. It's great. It's really works perfect. But it's just it just shows an openness, that it's basically easy to add something else. Stacey Simms 15:22 I have another question you may not be able to answer. I will be talking to Lilly about this. And it's really a question about them. I was at Lilly's headquarters in Cambridge, the headquarters for this project a couple of years ago, where they showed us their pump prototype because at the time they were working on building their own hardware. And obviously that project, I don't know if it's put aside I'll ask them about that. But this is not that pump. Correct. This is not the the pump that Lilly developed their partnership with you is using your hardware? If so meds pump, not this Lilly, it was a little circle disk pump that they showed us at the time. Simon Michel 15:56 Yes. If the pump is purely manufactured by IP summit, it is the product designed here in Switzerland, that will be the pump that Lilly will use. You're absolutely right, Lilly was working on our own pump program, patch pump type program for many, many years. But you have to ask them they recently paid to our knowledge, they recently recently stopped the project, and are now fully focusing on our joint partnership to bring a cement Lilly pump to US patients. Stacey Simms 16:25 I appreciate you answering that. I know that's more of a question for Lilly, and we'll talk to them about that for sure. But you know, insulin affordability is a huge issue in the United States. And we are we are struggling with that and a lot of our health care system right now. But making a pump that only uses one type of insulin is going to limit options. And I gotta be honest with you, I think people are, it's it may not be seen as a very popular feature. You know, we have insurance issues in the United States. I just went through this with my son, where we'd been on one insulin for many years. And then my insurance company said, No, you you have to use this other insulin. And that can happen here. Are you concerned about that at Simon Michel 17:02 all, this will happen, of course, but it is ultimately beneficial for a health care system. And I can make the comparison with mobile phones. So if you have a mobile subscription, and you have your fixed lens subscription or internet subscription, you get a better deal. Now, this approach is to really bundle all these elements, and it will ultimately very much be much better beneficial for people with diabetes, it will be better for the healthcare system as of lower cost....
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"It's Like a Huge Drop Of Hope" - Health Care Providers with T1D get the COVID Vaccine (Bonus Episode)
01/01/2021
"It's Like a Huge Drop Of Hope" - Health Care Providers with T1D get the COVID Vaccine (Bonus Episode)
Let's start off 2021 with some hope! This week you'll hear from five health care providers who received a COVID vaccine in late December 2020. They all live with type 1 diabetes and share their experiences leading up to the vaccine and how they felt after getting it. These folks all got the first round of the Pfizer vaccine, which means they are all scheduled for another shot right around the time this episode goes live. Back in September, lives with type 1 diabetes and asthma. She has completed the vaccine part of the trial – two shots – and says she's had no bad reactions and no regrets. This episode: 3:00 Danica, a diabetes educator 8:48 Dr. M, a pediatric endocrinologist 14:00 Michelle, an ICU nurse (who's breastfeeding) 18:40 Geoffrey, a hospital worker 22:30 Dr. Stephen Ponder, a pediatric endocrinologist who's lived with type 1 for 55 years. ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode Transcription: Stacey Simms 0:00 This episode of Diabetes Connections is brought to you by The World's Worst Diabetes Mom: Real Life Stories of Parenting a Child With Type 1 Diabetes available as a paperback ebook or audio book at amazon.com. Announcer 0:19 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:25 Welcome, everybody. And Happy New Year, I am so glad to have you along for a little bit of a different and special episode of Diabetes Connections, I thought it would be a really nice way to start off this new year with some good news. Look, we're far away from leaving 2020 and everything that happened behind right, there's a long way to go. But this is an opportunity to sort of turn the page and look ahead to brighter days, and give you some news and information and stories from people with type one, which as you know, is what I am all about. And if you don't know if you're new, Hey, welcome. We aim to educate and inspire about type 1 diabetes by sharing stories of connection. I am your host, Stacey Simms, and my son was diagnosed 14 years ago with type one right before he turned to my husband lives with type two diabetes. And I don't have diabetes, but I have a background in broadcasting. And that is how you get the podcast in about mid December. late December. I noticed like a lot of you did I'm sure that people I knew were posting photos of themselves getting the COVID vaccine, right. These are healthcare workers. These are our front line in hospital, usually who are able to get the vaccine in the very first batches. And how exciting is that? And the photos were really hopeful and really gave me just, I don't know, a feeling I hadn't really had for most of 2020. So I wanted to talk to some of these people and find out more and get you some information as you live with type one or if people in your family do, what to expect what their reactions were. So here is what we've got. For this episode, I spoke to five health care providers who all live with type one who received a COVID vaccine in late December 2020. These folks all got the Pfizer vaccine. That means they're all scheduled for another vaccine. There are two doses in the Pfizer protocol. And for most of them, that second vaccine is coming right around the time this episode goes live. There are four shorter interviews with a diabetes educator and endocrinologist registered nurse at a hospital worker. And those are more about personal experiences. And then there's a longer interview with Dr. Steven ponder who is likely a familiar name and a voice maybe to longtime listeners, Dr. Ponder goes a little bit more in depth with me about the vaccine and about staying safe with type one. As we head into this new year. He also talks about things you might want to think about and questions you might want to bring to your physician. Please keep in mind that all of these folks were kind enough to share their personal experiences. They are not speaking for their hospital systems or workplaces and they are certainly not giving medical advice. Okay, Up first is Danica, who you might know as Diabetic Danica, she has been on the show before she has big YouTube and Instagram following and she is now a diabetes educator. I started out asking her about her reaction, when she found out she be able to get the brand new vaccine. Danica 3:21 Or at first we didn't think we would get it so soon because we knew the frontline people were going to get it first. So we work in the clinic but we're not like on the floor that treats COVID patients. We have COVID patients, we do it via telehealth like on an iPad video call. So we've got to do a little bit but the day after or hospital got it we got to get it to so I was really excited to kind of definitely was the most I've ever been excited to get a vaccine before. Just because there's been all this buildup and it's been such a hard year. And I don't know just overall just excitement, which is kind of weird when you're just getting a vaccine. Stacey Simms 3:56 No, I think we're all feel very hopeful, right? I mean, we all kind of started hearing about it and think I can't wait. So it just explained this is the the shot where you need two shots where you'd be going back for the second. Danica 4:07 Yeah, so it's a two shot one. But it's nice because they have you schedule it while you're waiting afterwards. Because just to be safe. Since it's a newer vaccine, they want you to wait 15 minutes after to make sure you don't have like an allergic reaction. So while we're sitting there, they had us just schedule our next one. So I already have it scheduled. And I'll just go in and get it just something. I honestly was a little nervous after I got it. I was excited. But I was like, Well, what if I do have a reaction? You know, because that's what everyone's worried about. I feel like and that's the majority of the questions I got afterwards was How are you feeling? Was that effective you had I think everyone's really worried about that but I felt fine. I the only side effect I had or symptom, wherever you want to call it was my arm was sore, just like the muscles in it. But that happens to me when I get my flu shot. So it wasn't super alarming to me. I'd say the arm soreness was worse for me than with a flu shot but the actual poke it didn't even feel so like when I got the shot. There was absolutely no pain for me. And then later, I just got sore for about a day like probably 24 hours. I didn't notice any changes in blood sugar, it seems like just run of the mill for me. I don't think it affected anything there. Stacey Simms 5:14 What has it been like for you in the clinic? Can you talk about your routine and how you stayed safe? Danica 5:18 Yeah, you know, it was it was really stressful at first because things were changing. And it was very and so like, every day, I felt like we were getting multiple emails about new protocols and things we had to do. Now it's more routine, which is helpful. You know, we wear masks and eye protection. And we really thoroughly wipe down high touch areas, they call it in our patient rooms, the doorknobs and the chairs and the keyboards and everything, this stuff that kills the virus. And I guess I thought it was I don't know, if anything major has changed. I mean, other than me looking at the numbers every day to see how they're going up or down and making sure I'm on top kind of what's new with the virus, just in case patients ask. But I thought it was a lot more stressful at first, like we're getting super used to wearing masks in the room, but I'm still looking forward to the day when I don't have to because it's kind of hard to talk to someone for an hour with a mask and everything covering your face. You know, Stacey Simms 6:10 how has this year been for you? I mean, you've been able to go to work, which I think is probably has been very helpful. But what has it been like, you know, how are you holding up? I guess is what I'm asking. Danica 6:20 Yeah, it was it was harder for us, like I mentioned, just work stress, that kind of thing. My day to day work, life hasn't changed a whole lot other than the extra precautions. And initially, we were shut down in my state. So I, I couldn't see my family and I was spending a lot of time at home. So mostly on weekends, I would notice it the most where I'm like, I'm not doing anything fun. And then it opened back up. And so with precautions, we could go out and do things. I feel like I'm hiking a lot more this year for the outdoors and distance and just beautiful one so fun to do. But in my personal life, it's actually been a great year, it is so funny to say to say overall, it's been such a crazy year, but my parents moved to the same town I live in which I'm super excited about. I became an aunt this year, and my little niece was born. And I started seeing my boyfriend as well. So just a lot of like personal life things that have been really exciting for me. So it's been kind of nice to have those as a happy distraction in the midst of the Unknown Speaker 7:13 craziness. Stacey Simms 7:14 I'm so glad to hear that. It's great to talk about good news. That's wonderful. Danica 7:18 I know. Yeah, there's always something good. And all the bad. Stacey Simms 7:22 I wonder to the people who are giving the other health care workers the vaccine, were they very Matter of fact about it. Were they excited? I imagine there was more words in your mouth. It's like there be more joy than there hasn't been for a while. Danica 7:37 I thought it was exciting. Yeah. Anyone the person one of the people who checked me in and someone I worked with in the diabetes clinic today, she's a nurse practitioner. So we were just catching up to and talking about that. We were excited about it. She hadn't got her vaccine yet. So she was looking forward to getting it most people working there hadn't gotten it yet, you know, because they're just volunteering, I assume to to kind of help out with it. So it was a cool process to be a part of. She ended up getting it low later that night, because they had two extras, and they were already out of the freezer. So they had to give them so Wow, that was kind of fun to hear about later, too. But yeah, I think overall compared to me getting my flu shot, it was a much more exciting thing. And you could tell it was a little new just because they they couldn't remember all the questions they had to ask me they had to look at their little cheat sheet, which is totally fine. And you could just tell she's like, I gotta do this a couple more times to be able to drink it. But it was like a teamwork. And yeah, they were doing a really good job. Stacey Simms 8:29 My next interview is with Dr. Jacob masse check. He's a pediatric endocrinologist who was diagnosed with type one as a teenager. He's been in and out of the hospital this whole year and his clinic as well. And he goes home to his family, which includes two children. So he was thrilled to hear that the vaccine was available through his hospital. Dr. M 8:48 I feel excited about it as well. I think this is, you know, the light at the end of the tunnel. So I'm thrilled that we have vaccines. I know Stacey Simms 8:57 you work in an office that probably more than most has had so many questions about COVID because you treat kids with type 1 diabetes yourself live with type one, what was your reaction when you found that you'd be among the first Dr. M 9:10 I'm very excited to receive the vaccine, we get regular updates on vaccines and get a sneak peek into how these vaccines are developed and how they work. And I actually think that this vaccine will be very similar and will work in a very similar fashion to the way that the flu vaccines work. So I think it's a safe vaccine. And I'm excited that it's going to be available for most of us very, very soon. Stacey Simms 9:38 It's going to be interesting for you to balance being a healthcare provider. You know, you want a vaccine because you see patients you're in a hospital system, but you also live with type one, any more thoughts kind of for yourself in your protection or all about your patience or a little bit of both? Dr. M 9:53 Well, being a type one, I am at a greater risk for having poor outcomes. If I worked To catch COVID and develop severe symptoms, so that thought is always in the back of my mind, being able to get the vaccine will put me at, I guess at a more comfortable level, seeing patients every day, knowing that I, I am protected. And knowing that I'm also less likely to develop it not only because of my risk, but also the risk of my family members that I love. Stacey Simms 10:26 I imagine that most of the people that you see, I'm making an assumption here, but you know, your pediatric endocrinologist, most of the kids are not eligible, certainly this first wave of the vaccine coming out. But you some of your patients will be some of your older kids and maybe some young adults that you see, what are you telling them? When they're asking, should I take the vaccine? Is it safe? What do you know? What are you advising patients? Dr. M 10:48 My understanding, and I am not an infectious disease expert. But from the kind of peek behind the curtain that we have received as physicians is that I think it will be a safe vaccine, it will work very similarly to the flu vaccination. So I think it's safe, sort of advise my patients to follow the restrictions on their, you know, local scale or state scale. But don't rush out of restrictions are lifted, wait and see what happens wait on the sideline, ever restrictions get lifted, or bans get lifted, we kind of have to think that we are, you know, at a higher risk. And it's better to wait and see what happens instead of rushing out if things open back up. So that's been my advice from the very getgo is, don't be a trendsetter when, when restrictions get listed, Stacey Simms 11:45 when I look at the pictures of health care providers getting vaccinated right now, it has surprised me how excited I am, was that your reaction to tell me a little bit about your you know, the emotion of it. Dr. M 11:59 I think having vaccines that are FDA approved, and that the FDA feels are safe, I think is a wonderful step towards seeing the light at the end of this tunnel. I think it gives us hope that we will soon be able to put this horrible year in the past and move towards a more normal life. I'm very excited about it. I'm thrilled. I think it's everybody's stress level will go down as we see that these vaccines are safe and are working. And we see that trends will start going in a positive direction. By positive I mean fewer numbers of patients testing positive and having complications. I feel great about it. Stacey Simms 12:46 I know you're not like an operating room all day. But I imagine when you come home from work, you've got to take a lot of precautions to Dr. M 12:51 absolutely make sure that I changed my clothing I wash up before I give them a hug. And that is something that I do. And I've been very fortunate knock on wood that I've stayed healthy during this entire ordeal. Stacey Simms 13:06 I've talked to a couple of health care providers who have similar stories of you know, changing outside and doing this for so many months. I can't imagine how great that's going to feel the day that you can be like, come on, I can hug you I'm home. Dr. M 13:18 I think we all look forward to that day. There's a lot of things that we look forward to and you know, this year has been very trying but it also made us appreciate kind of the silver linings in a lot of things. And it's been a reset for a lot of things. So I think we'll come out of this ordeal being stronger and having a greater appreciation for things that we may have overlooked in the past. Stacey Simms 13:43 You will next hear from Michelle, she's a registered nurse and she has spent this year working with COVID patients. She has two small children. And as you'll hear, she's breastfeeding which was something she gave a lot of thought to before she decided to get the vaccine. I asked her to kind of describe of what's going on with her day to day. Michelle 14:02 I'm I'm busy. a mom of three year old and a 10 month old. I'm a wife. Unknown Speaker 14:10 I'm a registered nurse, Michelle 14:11 I work taking care of COVID patients. Normally I work in the ICU and like on a telemetry unit. And then I'm also in grad school pursuing family nurse practitioner. So I have a lot going on. Stacey Simms 14:24 Yeah, what is this year been like just with COVID patients? Well, we Michelle 14:27 we prepared in March for this huge surge because we're in Pennsylvania and New York's right next door, and it didn't come. But our surge is now like our inpatient census is around 100 patients total for our hospital and we have 60 COVID patients right now. It's more than we can handle. It's all hands on deck. Stacey Simms 14:46 What's your routine like for coming home? Michelle 14:48 So with the two little ones, they don't understand that you can't touch mommy. So I shower at work. And then I come home so I end up getting home kind of late. If I finish everything On time 715 731 I've done so I don't get home till 815 at the earliest. Stacey Simms 15:05 So tell me about the COVID vaccine. When did you find out you were eligible? And how quickly did you say? Yes, Michelle 15:11 so I've been thinking about it long before it was even a possibility, and doing research and reading. And when I saw that the Pfizer vaccine was approved, our CEO, she's awesome. She's very transparent. She sent us emails all along. And she said that our hospital had applied to be a distributing center. And then she emailed us and said that we were approved, so I knew it would be coming. And I had already done my homework to know that I care for COVID patients, right, I see like the worst of what COVID can do. And to me a vaccine with a little risk or COVID with intense risk, Stacey Simms 15:48 it wasn't really much of a question. Were you concerned? Or did you ask about type 1 diabetes? Did you talk to your endocrinologist? Or did you say, Okay, I know enough, I've seen enough. Michelle 15:58 I actually, my endocrinologist doesn't know that I took it, I I did talk to my primary care doctor, who's also the pediatrician for my children, and I am breastfeeding. So I just wanted to check and make sure that it was going to be okay in that way. But the research shows there hasn't been breastfeeding research on the vaccine. But in general, vaccines are safe for moms to get when they are breastfeeding, and the chance of passing through breast milk is very small. So I considered all that I consider the risk for myself of getting COVID with type 1 diabetes, and I just didn't feel like the vaccine was going to be the big risk. Actually, I think I haven't gotten the COVID assignments as much as some of my other co workers have. And I honestly think that's because nobody else say it out loud. But my co workers know I have type one. And I think they're looking out for me, which is huge. Stacey Simms 16:52 I'm curious what advice you would give as a you know, as a health care practitioner, as someone with type one who has seen COVID this year in a way that most of us have not, you know, what is your message about the vaccine? Oh, Michelle 17:04 I think Americans like to think that...
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T1Detect: A New At-Home Test For Type 1 Diabetes
12/29/2020
T1Detect: A New At-Home Test For Type 1 Diabetes
Could a new, simple at-home test change the way we look at diagnosing type 1 diabetes? JDRF hopes to make something called T1Detect part of annual health checks someday. Dr. Frank Martin is a Director of Research at JDRF. He explains T1Detect in detail, including what the test is like, what it costs and where the information goes. And.. in our last scheduled show of 2020.. Stacey talks about ending this lousy year with a lot of hope. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode Transcription: Stacey Simms 0:00 Diabetes Connections is brought to you by Gvoke Hypopen the first premixed auto injector for very low blood sugar and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:16 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:22 This week, a new simple at home test for the antibody markers of type one JDRF is rolling out T1Detect, something they hope that someday will be just part of regular health screenings. Frank Martin 0:36 We would like to see this included so that right off the bat, we know how many people in the United States and in the world are at risk for developing insulin dependence so that we can intervene earlier into these people we can improve their health right at the beginning. Stacey Simms 0:49 Frank Martin is the Director of Research at JDRF. He explains T1Detect in detail including what it costs and where the information goes. And it's our last scheduled show of 2020. I want to talk about ending this lousy year with a lot of hope. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show. I am so glad to have you here we aim to educate and inspire about type 1 diabetes by sharing stories of connection. I am your host Stacey Simms, my son Benny was diagnosed with Type 1 14 years ago right before he turned two, my husband lives with type two diabetes. I don't have any type of diabetes, I have a background in broadcasting. And that is how you get this show. And here we are at the end of 2020. I was taking a look back I put out 71 episodes this year, we passed a million downloads, including 100,000 podcast views on YouTube. I talked to people around the world this year, including a mind blowing nine person six time zone game show over the summer, playing Hollywood Squares via zoom isn't something I'd expected to do going into this year. But that is just one tiny example of how we all I think tried to find some good in the great, awful. That was 2020. That's what I've been calling it. I'll talk just a bit more about this year. And my thoughts into next year. And some other news plans I have. I'm going to do that at the end of the show after this interview. So I hope you stick around after that. I don't know about you. But I was really intrigued when I saw JDRF putting out a lot of posts, a lot of ads, really try to spread the word about T1Detect this new at home antibody test. My guest Frank Martin does a terrific job of explaining what it is they're testing for, and why and how it works. I'm not going to do that here. But we have spent a lot of time over the last few years talking about TrialNet and the work that they have been doing in this space. I am a big fan of TrialNet, I will link up more information and the episodes that we've done about their research. And if you're not familiar, real quick, TrialNet does do testing to see if people carry the antibody markers. They are a research study as well, they are trying to learn how to prevent type one. And we do talk about that in this interview coming up. But again, I'll link back to other interviews that we've done. It's been quite a few over the years. And you know, they're likely going to get approval for Teplizumab, the medication that is now shown to put off the development of type 1 diabetes for three years. So all of that to say why do we need to detect, right? Why this and why now, I think Frank does a great job answering all of those questions and more. And also, there is a video version of this interview. I'm doing that more often. And that's why it may sound just a little bit different. As we start, you can go watch the whole thing if you prefer over on our YouTube channel. It is Diabetes Connections over on YouTube, but it's the same interview. It's just your preference. Whether you like to listen or you prefer to watch. I'm talking to Dr. Frank Martin about this new program from JDRF really caught our attention and wanted to learn more about it. Dr. Martin, thanks for joining me. Frank Martin 4:10 Thanks very much, Stacey. It's good to be here. Stacey Simms 4:12 Yeah. So tell me a little bit just in general about T1Detect I think a lot of people saw it pop up on social media got it in an email from JDRF. What is it Frank Martin 4:21 first off something we JDRF we're very proud of our our mission is really around accelerating the development of disease modifying therapies to help slow cure or prevent to one day and towards that we saw that there was a gap there is a need to be able to identify more people who might most benefit from therapies like that. And right now, there's a lot of great programs like great research programs that are doing this places like TrialNet, the asked program in Colorado, there's a lot in Europe as well. But those programs still aren't identifying enough people. So how do we identify more people? We knew that we need To educate more people about what it means to be at risk for T1D, that it's not just family members who are at risk, but I think it's almost 85% of people who are diagnosed don't have a family connection, we need to be able to teach the general population teach the United States and hopefully the world that this is a real issue. So T1Detect really is an education program and awareness program about type 1 diabetes and its risks. And then a very important component of that is making the test available to people. Because right now, they're not really available to people except in the context of research settings, or as people like you might know, in the context of an actual T1Ddiagnosis, when someone's has super high blood sugar, they're in the hospital. And then the doctors will do a confirmation test to see if it's type one, we want to make it available to people who don't yet have symptoms. So hence, T1Detect. Stacey Simms 5:49 All right, so tell me about how it works. It looks like you get something in the mail, tell me about the test, like the physicality short, Frank Martin 5:55 short, so you can go and find the test in a couple different places. First and foremost is the JDRF. website, we have access to information and the test kit button on our website through T1Detect, you click the button, it gives you some information about what it is to have to on D what the risk factors are, what are auto antibodies, because remember, we're What are we testing for, we're testing for auto antibodies, one of the major signs and symptoms that people have the autoimmunity, at least a T1D, you click the button you go to the Enable portal enable is the company that's running the test for us fill in some information, we're asking for your name, mailing address, things like that, we're also asking for some demographic information, we want to learn who's getting to end who's at risk, and that'll help us improve the program going forward. And then you come to a choice where you can pay for the test, the test is not terribly expensive, it's $55. To run the test, plus or minus a couple taxes, you also have the option if you cannot afford the test to have JDRF pay for the test for you will pay for the bulk of the cost. I'm leaving you with just a copay. $10. Right now, it's not a feature to ask your insurance company to pay for this, but in the future it will be. So all that being done, the test will get sent to you, you'll get a little box in the mail. And it was pretty simple. I did it. You have a Lancet, you poke your finger. And then you fill in two out of four of these circles on a piece of cardboard, let that dry and send it back. And then a couple weeks later, the company will tell you, you have one, two or three of the type 1 diabetes specific auto antibodies. Alright, so Stacey Simms 7:34 let me just stop you right there. It's a it's a finger stick, you guys are providing the Lancet Frank Martin 7:38 in the envelope and the band aid and the gauze. It wasn't very hard. I wash my hands first, there's a little alcohol swab to sterilize my finger. And then I did the test. But one of the benefits of what we're testing for, it's sort of a little resistant to dirt and contaminants. Yeah, I would Stacey Simms 7:55 think you know, you're not you're at home. You're not in a sterile lab. Yeah. Frank Martin 7:58 Yeah. So it's been okay. The reason we partnered with enable bio sciences on this particular test kit was because they've tested it a lot in this situation, and shown that when it's performed at home, and I have dogs, there's dog hair in my house, there's all sorts of crazy things going on in your house, it's still met the sensitivity and specificity requirements that we would need to say yes or no, you have the presence of this marker. So we have some pretty good confidence in the validity of the test. In that regard. Stacey Simms 8:27 I have a lot of questions. Sure. My first is, and we're going to talk more about the test itself and what you're testing for and what you do with the results. But I have to say my first question is, if you're looking for people who are not touched by type one already, right? You want people who don't have it in their families? I have to say, I'm not sure jdrf I didn't even know what that was right before diabetes, why not reach into pediatricians offices or, or other organizations? Or is this coming? Frank Martin 8:54 So that's, that's a great question. I've two answers. First is, yeah, if you if you don't know jdrf, if you don't know T, one D, it's not going to resonate with you to see now that there's a test available to tell me about that. So there's a huge education campaign. That's part of this. But we're going to educate people through social media, places like Facebook, web and D to tell people in the world who wouldn't normally know about tea, Wendy or jdrf. What this means that's an important component of it. The second is, how do we educate doctors who may not be familiar with tea one day, not all doctors are super familiar with it. So there's a huge healthcare provider education piece, that's also part of this program. That's why this program is not just a screening program. It's very heavily into patient education, population education, health provider education, and all those things are kicking off now. So this week, I think you'll start to see some social media campaigns around it. And in the new year, we'll be rolling out the health care provider education pieces. Unknown Speaker 9:52 So let's get back to the test itself. Frank Martin 9:54 Sure. Stacey Simms 9:54 What are you testing for? I don't know how specific you want to get a scientific you want to get It's not a question of high blood glucose and that sort of thing, right? Frank Martin 10:03 It's not. So let's take a little step back to the about the biology of type 1 diabetes, the biology of autoimmune diseases. So type one is an autoimmune disease, you know that I know that not everyone knows that it is. And one of the ways we can tell a person who has an autoimmune disease is we can look in their blood for signs and symptoms of that signs and symptoms that their immune system is doing something is not supposed to be doing. In type 1 diabetes, we look for something called auto antibodies. Now auto antibodies are something that that's sort of a general term to all different autoimmune diseases. People with multiple sclerosis have auto antibodies, people lupus have auto antibodies. What we're looking for in type 1 diabetes are auto antibodies that are specific to type 1 diabetes. And what makes them specific to type 1 diabetes is they are specific to things that are in your pancreas. So we actually are looking for three of the four primary auto antibodies that have been determined through many many years of research to be very good diagnostics for type 1 diabetes, they're IAA, IA2A and Gad, 65. Some people may remember those names from trial net or other organizations. But there are three of the four that help us diagnose to end and predict your risk. Now, we're not doing the fourth, but we will soon do the fourth. But based on those three, if you have two or more of those, we know pretty well that your risk of developing insulin dependence is very, very high. In fact, if you have two or more of those in your blood, you already have type one diabetes. So that's something people don't understand. Right? If you have two or more of those auto antibodies in your blood, you already have type one diabetes, you may not be symptomatic, but you already have it. Stacey Simms 11:46 Well that Okay, so I know people who've gone through trial net and have had two or more of the antibodies and don't don't have well, they have type one as you're saying, I guess, but they don't have the signs and symptoms. Well, how is that Right back to our conversation in just a moment. But first Diabetes Connections is brought to you by Gvoke HypoPen, and almost everyone who takes insulin has experienced a low blood sugar and that can be scary. A very low blood sugar is really scary. And that's what Gvoke HypoPen comes in. It's the first auto injector to treat very low blood sugar. Gvoke HypoPen is pre mixed and ready to go with no visible needle. That means it's easy to use in usability studies. 99% of people were able to give Gvoke correctly. I am so glad to have something new, find out more go to Diabetes connections.com and click on the Gvoke. logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma. Visit Gvoke glucagon com slash risk. Now back to Frank, and he's answering my question about people who test positive for the antibodies, but don't go on to develop the classic signs of type one. Frank Martin 12:59 When we talk about populations and health, there's always people at the far end of the spectrum, those people are at the far end of the spectrum, they don't represent what is normal for the whole population. There are a few people who who have two or more auto antibodies who never become insulin dependent. There's also some people who don't have any auto antibodies who become insulin dependent, and that is type 1 diabetes. It just means that in those people well in the people who are more who don't get insulin independence, there's some sort of protective mechanism going on there that I can't entirely explain right now, in the people who don't have these classic auto antibodies, it means they have something else in their blood that we're just not testing for. Stacey Simms 13:40 I mean, I know the research isn't perfect, and it's not, you know, exact, but those things are important. Which leads me to my next question, which is what happens when someone gets their results? And they find out they do have these auto antibodies, what is the testing system do for them, so they don't honestly get worried. And that's tough information to get if you're just home in your house opening a box, Frank Martin 14:01 right? There's a couple things that happen through screening and a to end diagnosis that can be scary one, they're scary, they they can cause a lot of psychological distress to the patients, their families. Also, some people get diagnosed with T1Din a really serious medical situation called diabetic ketoacidosis, which is in and of itself scary, and which in and of itself can cause worsened glucose control over the rest of your life. So there's a couple things we're doing to mitigate all these factors. First, we know that sometimes people get stressed out when they're thinking about getting screened for T1Drisk or when they learn about T and D risk. And we're making it perfectly clear that there are health care providers at their disposal, who they can talk to specifically for the mental health concerns around getting a risk diagnosis. Also jdrf has specific volunteers who are trained in talking to people who have recently been diagnosed with TMD. They've been through it themselves. They can see Say what their journey was like, What is good, what is bad, what to worry about what not to worry about. And that sort of personal communication, that sort of personal support is really important to help mitigate those stresses. And so we're going to deploy those same people, to the people who get a risk assessment from our program. Stacey Simms 15:17 So and I really appreciate you going through this, because you are a scientist you are, you know, you're kind of going above and beyond, I believe, talking about the mental health and support here, but I think it's so important science to Good point. So when I'm home, I get my envelope, it says you have these markers, here's a phone number to call, or here or next, someone's Frank Martin 15:34 gonna call you. Okay, so first, you'll get your results, you actually will get an email from enable saying your results are available, you'll have to log into the website to see your results. Now enable the company will know that you're in a high risk category, they will have a medical doctor call you to provide the results to you over the phone and talk to you over the phone, then you'll start to receive a series of messaging campaigns directed to you coming from jdrf saying we understand what's happening, this is what we recommend you to do. A lot of the recommendations are follow up with your primary care physician, you probably should get a glucose test after this, we're giving all the recommendations that we know from our own experiences have helped in the future, we'd like to see maybe a network of care around these people. But we don't have that yet. We don't have the ability to recommend a specific doctor to these people. But we can advise them to talk to their own doctor, we can support them through their jdrf network and give them the resources they need to make this journey as painless as possible. Stacey Simms 16:37 I have to say, I am so glad to hear that you are not going to wait to be contacted by them. Because you could that was my fear just looking at this as someone who's been through the process. No, you know, when you get a diagnosis, you're not thinking straight at all. So I think it's great that you're gonna be telling we've done Frank Martin 16:53 this before, right? Yeah, part of the of the benefit that is jdrf is, is we're made up of people who have to end who've been through the diagnosis, who have a lot of experience and support to offer to to new families. And so it's the least we can do in a program like this, to offer that to a person just finding out that they're at risk. Stacey Simms 17:12 You mentioned the four antibodies, yes, pressing for three, what's elusive about the fourth one, Frank Martin 17:19 it the other one's called z 28 zinc transporter aid. And it's just a trickier protein to work with. So the assay that the company's using right now just doesn't...
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Wait Wait.. Don't Poke Me! The Diabetes Game Show (2020)
12/22/2020
Wait Wait.. Don't Poke Me! The Diabetes Game Show (2020)
It's our annual game show! Based on NPR's Wait Wait... Don't Tell Me, Stacey invites panelists to try their hand at diabetes trivia, bluff the listener and limericks. This was first presented at the Friends for Life Virtual Winter conference where the audience played along via online BINGO. Watch the show on Special thanks to our panelists: Lauren Lanning, Justin Masterson and Chelcie RIce! ----- available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Episode transcript (beta version - check back for proof read version) Stacey Simms 0:00 Diabetes Connections is brought to you by Jeeva Chi popin the first premixed auto injector for very low blood sugar, and by dexcom take control of your diabetes and live life to the fullest with dexcom Announcer 0:16 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:22 Welcome back to another week of the show. I am your host, Stacey Simms, we aim to educate and inspire about type 1 diabetes by sharing stories of connection, a different sort of episode this week, because this is one of our game shows. I do these periodically for live audiences, usually at conferences and that sort of thing. And this year, we have kind of like everybody repurposed things for virtual. And so this time around, it was friends for life and their virtual winter conference. A couple of quick things. If you prefer to watch this is on my YouTube channel for the show. It's just Diabetes Connections over on YouTube, I will put a direct link in the show notes. And while it is kind of fun to watch these things, you don't really miss that much just by listening. In the trivia section. I will say there are three questions that are show and tell. But I do describe what the guests are seeing. I think you'll easily get it even if you're just listening. As always contestants are selected at random from the Facebook group from Diabetes Connections, the group, so make sure to join me over there because we do this now a couple of times a year, especially with everything virtual and people on zoom. It's so much easier to record these than in the past. I still really love doing it live and I hope to do that someday again soon. But in the meantime on with the show, recorded in November, and played at friends for life the first weekend of December 2020. Welcome everybody to wait, wait, don't poke me the diabetes Game Show. If you have heard the NPR version of Wait, wait, don't tell me. This is our version. So we apologize to NPR in advance. In this session, you are going to meet some terrific people living with diabetes or who have diabetes in their families who have gone above and beyond to help the community and we're going to have a laugh or two, probably at their expense. Wait, wait, don't poke me. We'll feature trivia bluff the listener and much more. But before we get to the games, let's get to our panelists. We'll do a quick intro and then we will get started. So first let me bring in Justin Masterson. Justin Hi, I first met Justin, when we were talking on the podcast about his walk a mile cards and exercise and empathy, a teaching tool to help those with diabetes understand a little bit about what people with diabetes go through every day. Justin's daughter was diagnosed with type one when she was five. She was diagnosed on her birthday. Yeah, he is in charge of strategy at seek a market research firm. Fell old is your daughter now just Justin Masterson 2:55 she just turned 11. So her birthday was just a few days ago, Stacey Simms 2:58 when she was really diagnosed on her birthday. Justin Masterson 3:00 it well. She fell on her birthday, but we got there the next morning. So it was technically the day after but she's now been six years and and living very well. Stacey Simms 3:11 That's awesome. All right. Well, we will hear more from you for sure. I want to bring in Lauren laning and Lauren is a familiar name and face to many people and friends for life. She's been there usually at the first timers since the very first ffl in 2000. She used to run registration at the elementary program now she leads the moms and the first timers. Lauren's daughter Monica was diagnosed in 96. And she has been I can say first and amazing at these muffle meetups. We've been doing boring. The muffled meetups have been awesome. Thank you. Oh, I Lauren Lanning 3:45 love them. It's great. It's great being able to connect with the fit. Stacey Simms 3:50 Yeah, so your daughter was diagnosed in the 90s. How was she doing now? Lauren Lanning 3:54 She is doing great. She's 20 she'll be 27 in a couple weeks. And she's at p in PA school at Stanford right now. Gotta brag. Wow. Stacey Simms 4:04 Yeah, go for it. That's awesome. And rounding out our panel is Chelsea rice. I Chelsea, he was diagnosed with type one as an adult at the age of 25. He's been part of the diabetes community since I can remember. Chelsea is a stand up comedian who doesn't just talk about diabetes, of course, but he has been honored by diabetes forecast Magazine as one of their people to know and he has brought much needed education and humor to groups like healthy voices and Chelsea, your you've really found a talent this year for making soap. I've been seeing all this beautiful soap. Chelcie Rice 4:37 Yeah. I've been locked in the house for quite some time. And so, you know, you get stuck with the phone in your hand and you get started looking at YouTube is like, you know, you take a shower, like you make stuff. So it's I mean, and that was like I and it's something that I that I do, if I see something that I get interested in Figure out. How do you make it? So that's how I even started. That's how I started baking. barbecuing. All this stuff is just like I just, you know, try to figure out okay, how do I do this? And so it just, I just picked it up and is is really kind of easy. And the funny thing is when I started just posting pictures, I was like, hey, how can I buy something like you know what I put in his name? I'd be like, you don't even know me. Stacey Simms 5:29 The soap looks gorgeous knows. I actually thought it was I thought it was food when you were first. Chelcie Rice 5:33 Yeah, no. That's the funny thing about soap is like, I mean, people talk about it. Okay, I've joined some soap groups on Facebook. Justin Masterson 5:45 That is such a quarantine thing to say. Yeah, join some soap groups on Chelcie Rice 5:48 Facebook like and that's the thing is like people were saying like, Okay, well, you know, people are quarantine now they're at home and they learn how to cook more than like baking sourdough. Random like, wash your hands with sourdough. I can make them fortune over this. So Stacey Simms 6:03 all right, well, as we move on here, you are each playing for a contestant who has been selected by random from the Diabetes Connections Facebook group. So let me tell you, who you are playing with and for and we thank them very much. So Michelle Briggs is playing with Justin. All right, Michelle. Yeah, fi Comstock is partnered with Chelsea. And Caitlyn states is with Lauren. So no pressure. But these very loyal wonderful podcast listeners are counting on you. Alright, Caitlin. Unknown Speaker 6:40 money involved? Am I gonna, ya Stacey Simms 6:43 know, hey, look, it's all virtual be tough to get Oh, well, yeah, Unknown Speaker 6:45 you know. Stacey Simms 6:46 So we're gonna start with trivia. And each of you has five questions. I'm going to know we'll take one person at a time we'll go through the questions. Don't chime in with the answers. But feel free to chime in if you have a comment or something you'd like to add. Or if you have personal experience, these are all diabetes community questions. They're not all about diabetes, which will become clear and write it Don't worry, don't worry, it's not, you're not going to be judged. I also do have some show Intel because we're at home in my office. So I thought why not? pull some stuff off the shelves and ask you about it. Alright, so we're gonna start with Justin. Everybody ready? I would stare at the clock if I had one. But hopefully we'll just we'll we'll just let you know when you're at a time. All right. Our first question comes from the field of sports. NFL tight end Mike Moore. I'm already messing up. NFL tight and Mark Andrews has type one. And he plays for the Ravens. He keeps a strict diet around games reportedly eating for eggs before every game and the same kind of sandwich the day he plays. And the night before. This sandwich is a staple of school kids. What is it? Unknown Speaker 7:57 Oh, man. Justin Masterson 8:00 My school. We ate a lot of chicken fried steak and salsbury steak. I don't think either of those qualify as sandwiches. I'm going to say it's the school kid. It's going to be a pb&j. I mean what's better than a pb&j? Stacey Simms 8:16 It is a PB and J and he says a lot of peanut butter. Not a lot of jelly. He prefers the complex carbs that come in. But I would think that the chicken fried steak is a complex something. Yeah. Unknown Speaker 8:30 It's complex. Chelcie Rice 8:32 Complex. There's so many complex things that go in it. Yep, yep, yep. Stacey Simms 8:36 All right. Excellent. All right. Next question. There is an eternal flame at Banting house, the Canadian National historical site where Sir Frederick Banting woke up in the middle of the night with the idea that led to the discovery of insulin. The flame is meant to burn until there is a cure for diabetes. It was lit by the Queen Mother. In what year? And this is multiple choice. Wow. 1979 1989 or 1999? I don't think this was featured on the crown. So Justin Masterson 9:07 it took it took him like 50 years to get this flame idea going. Unknown Speaker 9:11 Oh yeah, well, at least Yeah. Justin Masterson 9:15 I feel like it would be I feel like it would be in the 70s that feels like it was enough time to get the Queen Mother on board. I'm going to say 1979 Stacey Simms 9:23 incorrect. At 88 which I think is weird. I would have thought it was like 1959 but Chelcie Rice 9:32 okay, was all the rage on MTV. So Stacey Simms 9:36 I just finally figured out all the Elisabeth's in the royal family because of the crown the Queen Mother and the Queen girl anyway. Okay. All right. This is a an entertainment question for you. So brec bassinger is the young actress who stars in the CW hit show star girl actually got great reviews. It's been renewed for a second season. She lives with type one and her previous series was nickelodeons Bella and the Bulldogs and your daughter might have watched this. Maybe not. What sport did the Bulldogs play this whole show centered around this team? Was it football, baseball or soccer? Justin Masterson 10:16 Sometimes my thinking sounds a lot like googling. Now, I'm gonna say it was a soccer team. It had to be the Bulldogs soccer game with Stacey Simms 10:31 the quarterback. She was the quarterback. Justin Masterson 10:36 Michelle, I'll send you something nice in the mail. I'm just sorry. Stacey Simms 10:40 Well, there's a lot of game to go. There's a lot of Don't worry, don't worry. All right. Um, here's one. You know, I, I gave this answer away in the introduction. I don't know how well everybody was listening. I do this sometimes. Alright, here's the question. How old is the friends for life conference? I mean, what year of the conference? Is this year's 2020? lorincz. Unknown Speaker 11:07 Don't say any. Okay. Justin Masterson 11:10 1999. How about that? Stacey Simms 11:15 Well, I'm gonna give it to you. Because it is the 21st year, but it started in 2000. Right. All right. But we'll give it to you. We'll give it to you. That was on the line that was on the line. Okay. And your last trivia question, or this is a show and tell. I hope I don't get in trouble for this. We love all our sponsors. Okay. In in 2018. I don't know how well you can see this. Yeah, in 2018. Can you see this? Okay. accucheck had a diabetes awareness campaign where they sent out these hands, promoted by country singer, Ben NRW. The idea was that you'd make the symbol, right. And you would upload a photo to your social media platform with this hashtag. And then their parent company would donate if they would donate a buck to diabetes, education and awareness. So here's the symbol. What was the hashtag? Was it give a book about diabetes, Buck off diabetes or go buck diabetes? Justin Masterson 12:16 I can't believe any of those are true. Unknown Speaker 12:19 I'm gonna read it again. Stacey Simms 12:25 All right, we look at the answer in just a moment. What do you think it is? But first, Diabetes Connections is brought to you by Jeeva Kibo pen had almost everyone who takes insulin has experienced a low blood sugar and that can be scary. A very low blood sugar is really scary. That's what tchibo Kupo pen comes in. Chibok is the first auto injector to treat very low blood sugar. chivo hypo pen is pre mixed and ready to go with no visible needle. That means it's easy to use. How easy is it? You pull off the red cap and push the yellow end onto bare skin and hold it for five seconds. That's it. Find out more go to Diabetes connections.com and click on the G book logo. g Vokes shouldn't be used in patients with pheochromocytoma or insulinoma. Visit Chico glucagon.com slash risk. Now back to the game and Justin is trying to guess the buck hashtag Justin Masterson 13:18 give a buck for diabetes buck off that diabetes or go buck Stacey Simms 13:24 go buck diabetes. Unknown Speaker 13:25 Oh my gosh. Justin Masterson 13:29 I'm gonna say it was a buck off. Oh, hey, if those guys ever need some marketing consulting, tell them to give me a call. I think they might be on the wrong track from well, Unknown Speaker 13:43 less. Stacey Simms 13:43 You do Chelsea? Chelcie Rice 13:44 Yeah, I do remember that when I remember seeing is like are they really going with this one? That was Stacey Simms 13:51 there. Remember that at all? Ben rule. It wasn't it was not too long ago. It was 2018. He was on the Today Show or one of the morning shows. And it was it was really cute. I think they had a bull riding thing. I mean, it was really cute. Except for the part that was alright, you did great. Chelcie Rice 14:10 I gotta say, though, when you first pull that out. I thought that was a flying finger of fate from laughing in Asia, but yeah. Which finger to show first it getting easy. We don't want to give it away. Stacey Simms 14:31 All right. So Justin, thank you. Standby. We're gonna move on to Lauren. Now for the other trivia questions. And we're starting with technology. Right this year Insulet changed the name of their hybrid closed loop system from Omni pot horizon to something else. Do you know what they changed it to? Unknown Speaker 14:51 Ah, Unknown Speaker 14:54 no, I don't it's Oh, I'm so bad. No, no, Stacey Simms 14:59 it's Omni. Hi. Lauren Lanning 15:03 I can't remember no go. Stacey Simms 15:06 Sorry, Caitlin. Anybody? No Omnipod five. I don't don't ask me what coober Omnipod five man, Unknown Speaker 15:15 yet Anyone else? No, Unknown Speaker 15:17 no. Justin Masterson 15:19 I know about the Omnipod five as a thing. It just never occurred to me you would change from horizon to five. It feels like a downgrade and Stacey Simms 15:26 it's Omnipod five powered by horizon. Unknown Speaker 15:29 Oh god. Unknown Speaker 15:30 I don't know, either. Okay. Stacey Simms 15:33 Okay, so this one is a little silly, but I enjoyed putting this one together. Major League ballplayer Adam Duvall was diagnosed in his early 20s. He's had a great season with the Atlanta Braves. But in the minors, he suited up with the August green jackets, which is just a great name. What is the mascot of the minor league baseball team? Augusta green jackets. I'll give you three choices because this really has nothing to do with diabetes, but I thought it was funny. Is it an anthropomorphic green jacket? Like you know the Masters little green jacket? Is it a fierce green insect? Or is it a little green golf caddy? Lauren Lanning 16:17 I'm going with the answer. Look for thick, Stacey Simms 16:21 green jacket. green jacket that looks like a person. Yeah, no, it's a green insect. It's the like a yellow jacket. jacket. It's got a little stinger. It's very cute. It's very cute. I had nothing to ask about Adam Duvall. Sorry. All right. Here's a here's another one. You might know this one. Eric church, just one Entertainer of the Year at the Country Music Awards. I was in attendance a couple of years ago when he gave $1 million to a local jdrf chapter at their Gala. What is his connection to diabetes? Is it Oh, go ahead. Oh, we are multiple is his connection. He's got a connection of type one. Is it his mother, his daughter or his wife? Lauren Lanning 17:08 His mother, it is his mother Unknown Speaker 17:10 act. Yeah. Excellent. Yes, his Unknown Speaker 17:12 mom got one. Yay. Stacey Simms 17:16 All right. Um, diabetes, mine ran an article earlier this year referencing how many potential cgms are in the works currently being studied or built or trademarked? How many CGM continuous glucose monitoring systems Did they say are potentially coming? 1929 or 39? Lauren Lanning 17:41 I'm going to go with 29 Unknown Speaker 17:45 it's 39. Wow, Unknown Speaker 17:48 isn't that crazy movie? Unknown Speaker 17:49 Yeah. 39. Unknown Speaker 17:53 Hey, Chelcie Rice 17:56 we really need that many choices. Stacey Simms 17:58 I don't think we're gonna get that many but let's all throw in. Chelcie Rice 18:02 I mean, 39 What are we gonna be buying cgms at like, you know, Kroger or something. Stacey Simms 18:07 People like poor Gary shiner. The You know, there's certified diabetes educator who tries every system he's gonna be covered. Justin Masterson 18:12 So let's just work through all those you can only wear for the time before it really. Stacey Simms 18:19 Unfortunately. Lauren Lanning 18:21 I was on an airplane with him. And I think we were going to London for CWT conference. And i ne had on like, a, he had on a few different pumps testing. Yo, what happens? It was it was interesting. He's Stacey Simms 18:37 amazing. All right, your last question. Great, Chelsea. Chelcie Rice 18:41 No, that was just imagining and trying to go through ATF Yoda. Unknown Speaker 18:45 All that. Unknown Speaker 18:48 Want to explain. Stacey Simms 18:52 Just I'm just beeping every two minutes. Don't mind me. Lauren, here is your show Intel. This is one of the Bibles of diabetes care, right? The Pink Panther book. This is the ninth edition from the year 2000. I think we're all very familiar with this. But the question is, when was the Pink Panther book first published? Was it 1970 1980 or 1990? Didn't didn't. Donna Lauren Lanning 19:25 nine teen. Wait a minute. Wait a minute. It's Monica's Dr. Monica used to go seek Paperchase. Oh, and I used to work for the children's diabetes foundation who publishes the that book. I know this. Ah, it's 1970 Stacey Simms 19:50 it is it is 1970 who knew I didn't know you knew that. That's a Lauren Lanning 19:55 thing. Do the math because Dana was died. Dana Davis was diagnosed And she's got this old and I have to do the math. Stacey Simms 20:04 Yeah. And Barbara Davis center of course is where that so Chelcie Rice 20:07 that free, right? Corning fiberglass marketing? Lauren Lanning 20:13 No I think they paid oh yeah they paid for all the Pink Panther or no did they? Did they pay for it? There were there were very strict rules around how to use the Pink Panther. Well, and everything has been Stacey Simms 20:30 okay in my, in my research, I found that the first two monograph printings were in the 60s created by a parent to their basement using an old army press and sent out for free. So kids gather round and learn how we used to use paper. Actual publication of the book was in 1970. But...
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