Stacey & Benny: What We've Learned After 14 Years of Type 1 Diabetes
Release Date: 12/08/2020
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Benny sits down to talk about everything from which diabetes task he hates the most to what he loves about the diabetes community and much more. Stacey's son was diagnosed with type 1 in December of 2006, just before he turned two. This week he answers questions about Dexcom and pump site insertions and shares his excitement about turning 16 and (hopefully) getting his driver's license soon!
In Innovations, we talk about the new Hello Dexcom program
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Stacey Simms 0:00
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This is Diabetes Connections with Stacey Simms.
Stacey Simms 0:27
This week, 14 years ago this month, my son was diagnosed with Type One Diabetes. Benny joins me to answer a bunch of questions including how he psychs himself up for every inset and CGM change. He says, you gotta be fast.
Like with baseball, if you step up to bat and you get inside your head, you know, like you're gonna not hit the ball, you're gonna swing bed and if you like, leave the inset on your body. Like you're holding it there like, more and more you get in your head and like, this is terrifying. Why am I doing this?
Stacey Simms 0:54
Even now after all these years?
Oh, yeah, like if I don't do it in the first like, 10 seconds I have it on my body. I have to like take a minute.
Stacey Simms 1:01
He also shares what he remembers about moving to more independence. He was diagnosed before he was two. So it's been quite a change for us over the years. We also share what makes him nervous, what makes him happy, and a lot more
In innovations this week, a new program called Hello Dexcom may have more people trying this CGM. 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 along. We aim to educate and inspire about diabetes by sharing stories of connection. As I have said my son was diagnosed before he turned two my husband lives with type two diabetes. I do not have diabetes. I have a background in broadcasting and local radio and television news. And that is how you get the podcast.
I apologize right off the bat. My voice is a little rough this week. I have had some kind of lousy cold since Thanksgiving, I got checked for everything. COVID, strep, blah, blah, blah. It's just a regular old virus. And I don't feel that bad. But I probably don't sound that great. So I apologize for that. It really is hard to believe that 14 years have gone by. I remember that day like many of you do the diagnosis day, like it was yesterday. I've told a lot of stories about that day, I was working in radio, our lives were so different. My kids were so tiny. Some of you saw the photo I posted in the Facebook group of Benny and you many of you met him when he was tiny. And it's got to be jarring because I don't share photos of my kids all the time on social media to now see him looking so different. And he's 5’11. I mean, he's working out all the time. And we talked about that in the interview.
It's just amazing, right? You parents know you you hear your kids in the kitchen and you look up expecting to see you know, your seven year old daughter, and there's this 19 year old woman. What are you doing in my house? All the cliches about how quickly it all goes. But I'm always happy when Benny comes back on the show and answers questions that you submit questions that I have. It's amazing for me as his mom and it's become quite a time capsule. I think as we'll look back in years to come, and I hope it's helpful or maybe entertaining for you all. So we will get to that in just a moment.
But first Diabetes Connections is brought to you by One Drop and I spoke to the people at One Drop and I was really impressed at how much they get diabetes. It makes sense their CEO Jeff was diagnosed with type one as an adult. One Drop is for people with diabetes by people with diabetes. The people at One Drop work relentlessly to remove all barriers between you and the care you need. Get 24 seven coaching support in your app and unlimited supplies delivered. No prescriptions or insurance required. Their beautiful sleek meter fits in perfectly with the rest of your life. They'll also send you test strips with a strip plan that actually makes sense for how much you actually check when dropped diabetes care delivered. learn more, go to Diabetes connections.com and click on the One Drop logo.
If you've listened to this show at all, you know my son Benny was diagnosed just before he turned two back in 2006. So that makes 14 years of type one in my house. We've done shows with him before In fact, when we marked one decade with type one, I interviewed my whole family. I will link that episode up if you'd like to go back and listen, I talked to my husband and my daughter and got the sibling perspective, which was really eye opening for me. And I talked to Benny, which four years ago he sounded quite different.
I have been told that Benny and I are kind of quick, we may talk in a bit of a shorthand when we're together. So listening to this interview, you should know just a couple of things. Geoffrey we mentioned is a diabetes camp counselor who is terrific. He's a great friend. We both love him, no matter what we say here. Sorry. Geoffrey. Benny mentioned some issues with his tandem pump. They are being wonderful about this. And by the time you listen, it's probably all resolved. But I will tell you a bit more about that after the interview, Benny and I get a little silly. I don't know if everybody appreciates that But enough of you have told me that it's okay to leave in. So I did. I did take out some really over the top ridiculousness, but I put that in at the very end of the show. So you can listen if you want to, like, Alright, we start off with Benny, rummaging around my office.
So I sent you into my closet to find a mic, pop filter. And what did you come out with? What is that?
It's a USB hub. And what does that do? basically turns one USB slot into three or four.
Stacey Simms 5:29
I remember buying that because I thought I would use it at conferences, but it didn't really work out that way.
Well, I mean, your computer has, I mean, I guess enough. Like it's not a one of the Mac's that have one USB, this would be very useful for that. I do not have one of those, but I will certainly find a use for it.
Stacey Simms 5:46
All right. So how are you?
How are you?
Stacey Simms 5:50
I'm great. Oh, my goodness. So as we are sitting here, this is 14 years of type 1 diabetes. Today, this is your actual diversity is today.
I’m such an old man
Today's the Saturday that we went down to the hospital in Charlotte. And then later that night, when I was freaking out, you put your arm around me and you said
it’s gonna be okay, mom,
you said it's gonna be okay, mommy. Yeah, that was tonight.
I'm an old man. I'm so old. That's wild. I don’t remember any of that.
Stacey Simms 6:15
What's interesting, too, is we started your Dexcom on Christmas Day. 2013. So you had just turned nine? Yeah, or you were about to turn nine. And that's we started your Dexcom you must remember that.
And we were at grandma's house in the big screen room,
Unknown Speaker 6:36
right? Like that movie theater room.
And you were both with me. I was like, freaking out. And dad was just like, Alright, we're doing it wrong. And I was like, that was terrifying. Let's never do that. Again.
Stacey Simms 6:49
That was the old I was gonna say G5. But it was the G4. It was a G4 flat. No, it was a G4 pediatric which had the same inserter as the G5. What I wanted to ask you about was. Stop. You are impossible we need to do this on video one day. See, you've been doing that, trying to like eat the mic three years old, gross, fine. Well, you couldn't find any pop filters, because every time I talk to you I have to get a new one.
So I figured you don't have a lot of like reflections with diabetes. we've, we've asked you some of these questions before
and I'm not the best at answering them.
Stacey Simms 7:30
Not quite a I'm not the most reflective person a meditative Sage if that's the right way of putting it. But you do have a lot of good things and wisdom to share. So I thought we'd take a different tack this time. Okay. All right. So here are some dumb questions.
Unknown Speaker 7:45
We love them.
Stacey Simms 7:46
And you have done your own will say, you have done your own pumping sets and Dexcom insertions I'm gonna say 2 to 3 years now I've kind of lost track, but it's been a long time. I can't remember the last time I did one with you. Which is worse, pumping set or Dexcom
Oh pump? For sure. Why? Tell me about it. Because the Dexcom is a little before the G5 and G for pediatric were terrifying. Yeah, they were like giant syringes and like you could feel the needle go in and like all you could feel it move the entire time.
Stacey Simms 8:17
Do you remember? That definitely let you finish the actual question. But do you remember the first time Geoffrey tried to get you to yesterday or so?
Are we friends for life?
Stacey Simms 8:26
We were at I think a Jdrf conference. It might have been a friend for life conference. But I think it was local. Because Geoffrey was there from our
local. Yeah, we were in the hallway outside the conference room. And he was like you either do it yourself or it's not happening. And that's actually how he made me do my first inset too. But that was that camp. Thank you, Geoffrey. You have traumatized me. He said the way he did it was just push up against the wall. And then like with the white part to go in, and then the clear part. he'd pull it up by himself. And I'm like, that's not how I would do that. And I was I was utterly terrified. I just remember walking up. Oh, you had I had it on my arm, right? And it was like the whole thing was stuck on my arm. And I was just like running around because I will I'm not doing this.
Stacey Simms 9:07
Yeah. If you're not familiar with how the G5 used to work, or the old Dexcoms you'd have to, it just looked like almost like a giant syringe a surrender, right? So you'd push down on one part and then pull up on one part. I'll put a video link in the show notes. So you can check that out. But it's very hard to do by yourself. So people got very innovative and use door jams. And well
I actually did it by myself. I mean, I got to the point where I could you just got to stretch your fingers.
Stacey Simms 9:32
But also you couldn't really do in your arm by yourself.
I couldn't I got to the point. Yeah,
excuse me. Um, it was just really fast because I'm so like most people like did it kind of slowly and then like pull it up pretty fast. But like I did it like all in one smooth motion so that I could actually do it with one hand on my arm. No, because I'm just that I don't
Stacey Simms 9:51
remember. I think when Geoffrey did it that day though. We wound up just removing it. Yeah, we just took it off because it was your conference with it sticking out of your arm.
Unknown Speaker 9:59
I mean Sorry to laugh.
Stacey Simms 10:00
I was like, You were scared. I was terrified. There's so much that you guys have to go through. That is so scary and not fun.
Unknown Speaker 10:07
So Geoffrey bullies me. All right.
Unknown Speaker 10:08
I love you, Geoffrey.
Stacey Simms 10:11
You said the inset hurts more now.
Stacey Simms 10:13
So how do you Wow Tell me about your procedure. Oh, you do it?
Well, the Dexcom. But let me get back to that. Now it's just a button. And it's not scary at all. Like you don't see the needle. You don't see anything but the bandage sticky part and the big orange button. It looks kid friendly. Like it doesn't look like it's gonna stab you. It's just a button. But the the inset like you can see everything. You have to like a bit. You're basically looking at the needle the entire time while you're unwrapping it. And let me just say that the inserts are way harder, way harder to unwrap than the decks comes. Someone should get on that. I'm with you. And like the spring mechanism, like you have to like pinch down on both sides. That's like, I just adds the aspect of like you are stabbing yourself.
Stacey Simms 10:59
Well, it's interesting, because you know, you have done more shots than people. Most people who use a pump will have done well. I don't remember any of them. You just did. You stopped in March. Oh,
Unknown Speaker 11:09
Stacey Simms 11:10
did that Tresiba. Oh, that you see.
Unknown Speaker 11:13
Let me rephrase.
When I think of shots, I think of like the the one with the orange test
Stacey Simms 11:17
syringe shots like the old Oh, yeah, that's true, because you were two and a half when we stopped that. Okay. But what I mean is, here's my question. As a person with diabetes, who has sharp objects in you quite often, it must be so strange to have to insert them and as you're saying, You're watching the needle the whole time you're wrapping the inset unwrapping the inset, and then you put it on your body. Isn't your body kind of telling you like not a good idea?
Yeah, no, I mean, absolutely. Like, it's kind of like sports. Like if you don't do it at that moment. Like with baseball, if you step up to bat and you get inside your head, you know, like you're gonna not hit the ball, you're gonna swing bed. And if you like, leave the inset on your body. Like you're holding it there. Like Like, more and more you get in your head and like, this is terrifying. Why am
Stacey Simms 11:58
I doing this? Even now after all these years? Oh, yeah,
like if I don't do it in the first like, 10 seconds. I have it on my body. I have to like take a minute.
Stacey Simms 12:07
That just makes sense to me. Because your body is never going to say yes to a needle. It's always going to want to send your body's not down.
This is not a good idea. crazy person.
Stacey Simms 12:18
Does the coughing still help?
Oh yeah, I do it every time. I don't know if I would need to anymore, but I still do it every time
Stacey Simms 12:26
and we should explain when you cough apparently you kind of confuse your body for minor pain.
I think it just distracting. Like I think if you like the whatever it is like the nerves receptor pain, whatever. Just focus on your lungs for like, a quarter of a second. And that's when the needles going in your body.
Stacey Simms 12:43
So can you now cough and stay still? Like that's the one thing that makes me nervous when I hear you coughing it's like picture you moving and then the needle getting
I never moved that much. It's like a little flinch. Like if your cough right now it's not like you're not gonna move six feet. We need a camera
Unknown Speaker 12:58
camera. He just like jumped off his chair. Maybe another time.
Stacey Simms 13:07
Right back to our chat 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 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 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 a pheochromocytoma or insulinoma visit Gvoke glucagon comm slash risk.
People ask me a lot. How did I get you to do your own insets and Dexcom stuff? And I don't really think we had a method. Yeah,
I don't. I think eventually it was like, I think it was a mix of us saying like, I think we should start doing this and me being like, I should start doing this. It wasn't like one of us was like this needs to change. It was both of us kind of like we can't if we want to
Stacey Simms 14:14
I seem to remember in fifth grade your inset coming out once and me saying you're fine. Do it yourself.
I don't remember that.
Stacey Simms 14:22
Well, I'm glad because I felt kind of mean at the time. But me but you did it and you were really excited about it. And I think it's also as you got more independent. You didn't need me or want me hovering over Yeah. No, but you don't mean like when you used to go to Birkdale with your friends, and we would go places and do things. You know, like in seventh grade, you'd go to Burke does our local shopping center and you wouldn't if your insect came out or had an issue with like, you didn't want your mommy coming to your rescue. Well, I would have been happy to I know. But I think that helps too. So what It's a tough answer, though, because there really isn't an answer is how you did it.
Yeah, it's kind of just um, and kind of just happened.
Stacey Simms 15:07
I think the G6 made that easy too, because you had been doing the G5 as you said by yourself. But when I forgot we were on the G6.
How did you pretty me forgot? Like I forgot. I thought it was like, I
Stacey Simms 15:17
don't know. Am I keeping you awake? I'm tired. You are beat tonight. workout? Yeah, well, we're gonna talk about that too. But when we switch to the G6, and there's that crazy video of you getting all geared up to do it in May of 2018. We got the G6 and you and I did a live Facebook, where you inserted for the first time was that on the couch? I think I remember that was the kitchen table in the old house.
Unknown Speaker 15:38
Oh, I do remember that.
Stacey Simms 15:40
And that after that you I mean, you did that one yourself. And then it was easy. So I never did it again. I mean, I never did the G6 period ever fancy. Yeah. Well, it's weird. After having done everything for you for so long.
It just tell us. You said you can't do it anymore. You said you can stab your son anymore.
Unknown Speaker 15:57
Oh my god. Hey,
tell me. So
Stacey Simms 16:00
tell me about working out. So you your wrestling practice is sort of back pain. And you've been outside today. So much fun.
Working out in masks outside in 50 degree weather is the best thing I've ever experienced.
Stacey Simms 16:14
What happens when you work out with diabetes? Because you work out a couple of times a week outside of wrestling too. I know, to me, you kind of act very casual about it. But what do you take into account? Like, how do you do that?
I'm very casual about it. Yeah, I pretty much just go into workouts. Like, if I'm above 120, and I bring food. And if I go below 120 I eat food. And then wait till I'm above 120 and then go back in. That's pretty much it.
Stacey Simms 16:42
That's that's super casual. I mean, at least you pay attention and you know, do what you need to do.
That's pretty casual. You see, I think you're replacing the word casual with lazy. Lazy would be like I'm 90. Let's do this.
Stacey Simms 16:55
Oh, I don't I don't know. I mean, you want to have an actual workout for the time that you're there. So you take care of what you need to take care of.
Yeah, because if you didn't, then you die. Well, don't worry, or it's a waste of time come in energy.
Stacey Simms 17:06
Yeah. So here's another question for you. I'm curious though. after your workout. You know, occasionally that pump doesn't get put back on
will because I go to the shower and shower last like shower for like two to three hours. Look, hot water and music. Very nice. Okay. Shout out to Tandem. Control IQ is very well, sometimes. You know, we're having some problems.
Stacey Simms 17:37
Yeah, well, we're just having some problems with Control IQ. We think the transmitter and the pump are not getting along right now. Each of the last four weeks have been ridiculous. We've gotten really used to control IQ.
It's great. It's really nice when it works.
Stacey Simms 17:48
Yeah. What is the diabetes chore that is the biggest pain for you.
Oh, filling a cartridge
that definitely filling a cartridge just
Unknown Speaker 17:56
because I said that for No, no, no.
It's definitely filling a cartridge pain in the Can I say a bad word? No? pain in the butt. Why? Because look, it's just annoying. Yeah, I have like 10 units less. Like at night. I have like 10 units left. And I'm like, Huh, I know, I have to go all the way downstairs and fill a cartridge. Right? You're all cozy in bed. Yeah. Like I'm about to go to sleep and I get I hear the stupid Animas alarm. But
Unknown Speaker 18:24
that's not the Animas alarm. You're First of all, whatever. You haven't had an Animas phone for four years.
Did I say Animas? Oh,
Stacey Simms 18:31
do you remember the Animas alarm?
Unknown Speaker 18:33
It was um, Beethoven?
Stacey Simms 18:35
Yeah. Because I can't. I can't hear Fur Elise without like.
But there was just like that very part. It didn't go on. It was like, Dude,
Unknown Speaker 18:46
that was it. Maybe they couldn't get the rights.
They? How did they How were they legally allowed to use that?
Stacey Simms 18:52
I think it's public domain. Is it? I think I think most classical music is Yes. Really? Yeah. You are not doing untethered anymore. We referred to that earlier. That's when you took about 50% of your basal from Tresiba long acting shot, and 50% from the pump with control IQ and with your body mind changing, right. But we didn't need to really do that. What did you think of that? Was it worth it?
I think at the time, it was very nice, because it significantly decreased the amount of times I had to change my cartridge. And that was really one of the main reasons we did it. And did it work like a charm. It did.
Stacey Simms 19:27
And it was also about changing that inset. Yeah,
well, that's different perhaps.
Stacey Simms 19:32
Well, no, I mean, I'm not talking about nagging you to change your inset, which I still do, apparently need to know. But I mean, we thought that there was something wrong with the inset somewhere. I don't know if you remember this. We tried different needle lengths. We tried different types. Right. We went to the longer needle and was just overloaded. It turns out by the amount of insulin we were trying to push through. So once we took half of the insulin away from the inset, it amazingly worked much better. Would you recommend untether You know, for a teen or somebody like I would
recommend it for someone that is using more than half their cartridge today will no more than a quarter of their cartridge a day and is a teenager if you're an adult?
Stacey Simms 20:12
Hmm. Why? Why do you think adults wouldn't do? Well?
I don't know. Like, it just feels like something that like, you know, teenagers have that like a hormonal imbalance. And I feel like it's just significantly easier to control it with a untethered,
Stacey Simms 20:27
I just felt bad. I'll be honestly I felt bad that you had to take an additional shot every day. Well, no,
I mean, I took that into like account mentally. Like I was like, I mean, is it worth it? And I was like, absolutely. It really was. I think that's one of the main things you should consider if you're looking into untethered. Like do you want to do another shot every day? And can you remember cuz I forgot sometimes. Yeah. But Tresiba is really forgiving? Tresiba is extremely forgiving.
Stacey Simms 20:49
Yeah. But it was amazing. The results were amazing. Not just with the cartridge changes, but with your agency and time and range, all that good stuff. Okay. So if it's a big if, if all goes well, you will be traveling to Israel, Summer of 2021 for four to four or five weeks.
Without anyone in my family.
Stacey Simms 21:07
Yes. But with camp with a camp group. What are your thoughts about diabetes? Are you nervous? Are you
a little nervous that I might run out of insets? Oh, and maybe insulin? I mean, I'm sure I won't, I'm sure we'll have an excess. I don't know, like being in a foreign, like, couple thousand miles away for the first time plus diabetes is? I mean, it's a little scary, like, truthfully, it's a little scary. But I mean, I think the fun and the the excitement significantly outweighs
Stacey Simms 21:41
I think you're very smart to worry about those things. Because unfortunately, you have to think about I think the most
thing, the thing I'm most worried about is my Dexcom not wanting to work. Oh, yeah. at Camp Carolina trails may rest in peace. The last year I was there, the second my phone was away from me, my Dexcom just did not connect to my pump once that entire week. And I really do not want that to happen.
Stacey Simms 22:06
Yeah, I remember that. That was um, that was 2018 2017, something like that. And we tried the Liebe re right, because I was kind of a backup plan. And then you were like, I'm just a diabetes camp. Forget it. And you did finger sticks all week. But that would not be fun.
Well, as I've made it abundantly clear. I think they give they their own you too much?
Stacey Simms 22:25
Well, they're ensuring your safety. Not everyone is is casual. But here's my here's
my thing. Here's my thing, right? If you have a Dexcom and someone like someone, a parental Guardian, gives it the Okay, why should you have to do a finger stick?
Stacey Simms 22:39
Well, because there are probably medical guidelines that they must go through, because they're not your parent that makes no sense. What if the parent
or guardian signs a waiver that says you can go completely off Dexcom?
Stacey Simms 22:51
Like, why would that not everybody does as well with the Dexcom as you do,
so that's why it's an that's why it should be an option to sign off to allow the parent or guardian to allow him I'm just so
Stacey Simms 23:01
happy someone will will take you that. I don't I don't sign anything special. I just say Will you put up with him? Here? Here? Take No no, no, no.
It's me putting up with them. Okay, it's very different. All right. Oh, my God. Look, I love the people there. But your policies I disagree with? I'm sorry. They're
Stacey Simms 23:18
shocked those the people that we know that are listening. Benny's never said anything like this to us. We've never heard him complain about anything. What a shocker.
You were Rufus. That was so much fun when we used to actually get together in person Tell me why it was fine. I
love that like the Okay, so, one, there was one day where I was walking down the halls and the second was with all the kids in there like, like the in the place where the parents sent them way to stuff dealing with them.
Stacey Simms 23:46
Like the child care theory.
That's what it's called. I see. I don't know, because I never got sent there because I refused. But like, those kids loved me. And it was it was so much fun. Like I really don't know how to explain it
Unknown Speaker 23:58
to me cuz you didn't have any training. Really? You've never been a mascot before the run in Davidson.
Oh, the JDRF Well, yeah, that was a lot of fun to do. The one the one with the kids though, was definitely the most fun. Like they just like their eyes lit up. They're like, Oh my God is this Oh my god. Oh
Unknown Speaker 24:14
my god, guys, look. Oh
my god. And you're in there and you're hot. And you're Oh my god, I'm so hot and disgusting in there. And I'm like, I'm like in this giant bear costume that all these little kids are hugging like a third of my leg. And I'm like, and I'm like dying inside. like half the time. I'm like genuinely smiling and the cat the other half the time I'm like dying on the inside because of how hot I am.
Unknown Speaker 24:34
But it was fun.
Oh my god, I do it 100 times. It was so much fun.
Stacey Simms 24:37
That's great. If you were to talk to those little kids outside of the room costume we don't want to scare them. Anything you would tell them about diabetes any Did anybody ever seen that helped you like anything that you'd like? Oh,
it's like I've said like 100 bajillion times and like I just said, Do what you want to do and don't let the stinking diabetes stop you. It shouldn't be something that stops you.
Stacey Simms 25:03
Alright, so I'm gonna I'm gonna make it more difficult because diabetes can definitely stop you, right? diabetes slows things down. Dude, how many times have we had to like change an incident a bit when I say stop? I
mean, like, like for a week, like you're just I don't want to do anything?
Stacey Simms 25:20
Well, I think it's important to talk about that because some people here don't stop and they think like, anything that goes wrong is a bad thing. And it's their fault, and they feel bad about it. And that's not what exactly what you mean.
Yeah, no, if something goes wrong with diabetes, the first thing you should think is it is not your fault. You did everything you could, something went wrong. Now, pick yourself out, figure out what went wrong, and try and fix it. And if it doesn't work, you track up someone else to help you.
Unknown Speaker 25:50
And you sounds like the Waterboy.
Unknown Speaker 25:55
That's some high quality h2o.
Stacey Simms 25:59
All right, you are almost 16
Stacey Simms 26:03
Let's talk about driving. I know that you think you've got it all in the bag. Absolutely
have it in the bag. I'm
Stacey Simms 26:09
the best driver this oh my god knock wood. I'm gonna swing a dead chicken over my head. And say a Kenohora the bad luck you just brought on yourself.
Don't do that English. I don't think a word you said there was English.
Stacey Simms 26:20
Just you know, take it easy. Take it easy, my son. It's a big milestone in anybody's life. But certainly for people with diabetes. I mean, we've gone over our like little protocol. And oh, here's a question for you. It's kind of about driving. So this is the first time I remember in your diabetes life where you've said, just give me the glucose tabs.
What's up with that? Well, I never liked the flavor of glucose tabs. I always thought they were kind of gross. But you have to take into account the convenience of them, they won't burst like I've had a lot with juice boxes gone, they won't melt, like gummies if I don't touch them for three weeks in a compartment in the car. And they really don't
Unknown Speaker 27:01
taste that bad.
So when it comes down to it, I'd much rather have something that I can I know will be there when I need it. Then something that tastes better.
Stacey Simms 27:10
Unknown Speaker 27:11
I know I'm so awesome.
Give me a card
Unknown Speaker 27:15
that you get your car. I got you a whole thing of glucose tabs,
Unknown Speaker 27:19
like the big ones. Yeah.
Stacey Simms 27:20
compartment already. That's
Unknown Speaker 27:23
orange, you glad I didn't say banana?
Stacey Simms 27:28
Sorry, I think we're good. What else? Should we What should we end on here?
What's it like? hearing other moms experiences with their kids with diabetes compared to your experience with me?
Stacey Simms 27:38
Oh, my gosh, it can be very difficult. Because I think I'll be honest with you, I think a lot of moms do a, quote, better job of managing their kids diabetes. And I have some guilt that I've given you so much independence, and that I haven't. No, no. juries not here yet.
The jury is definitely.
Stacey Simms 28:00
But I have some guilt that I haven't done as much as maybe I could have over the years. And I know that world's worst diabetes thing is a joke. But it's sort of kind of not sometimes. But on the other hand, I look at you. And I feel like while you may not be a perfect person with diabetes, you are not afraid of it, you respect it, you take care of it, but you're not afraid of it. And you don't feel You don't seem to feel guilt about it and you don't seem to be negative about it. You've never given up an opportunity because of it. And that to me means I'm doing okay. As you know, I talk to a lot of moms, especially in the Charlotte area with this this group that we have, and they're on the shortlist. It's it's a Charlotte parents. We have some dads, also moms, but it's it's a good question. Because I don't think um, and I think with with all parenting with your sister, too, I think that you know, there's no finish line. So I always feel like we could do better, we could do worse. But you know, if you guys are healthy and happy, then I feel okay. But it's a good question, because it's a really difficult one.
Well, thank you for coming to my podcast. We'll love to have you in about two weeks.
Stacey Simms 29:10
All right. Another one another question for you them. Ah, all right. We said how much we left control IQ stop. He said how much we love to control IQ. And I don't even know if you know what's coming down the horizon if I've kept you posted on the thing. What are you looking forward to in diabetes technology in the future?
The 80% thing?
Stacey Simms 29:27
Oh, and the next edition of the control IQ that will bolus you more robustly.
Yeah. Because while it works great, it is still not aggressive enough for me because I tend to rely on it a little bit more than I should.
Stacey Simms 29:39
Well, you, you know it would be really nice not to have to bolus for every meal. I think it'd be
really cool if they could find out a way to know exactly what and when I am eating. Well, there are some elders that thing that like senses when like you told me about the senses when you're moving your hand like
Stacey Simms 29:56
you know, there are some algorithms that are You're just gonna have to tell it you're having a small, medium or large meal, and it should be able to do all the work for you.
I feel like that's gonna that's too big of an umbrella of food. Because like if I'm having a small meal that could be like a bar, or it could be like a bunch of fruit. That's true. I feel like small, medium and large is too big umbrella. Well, it is. That would be a great first step, but definitely ensure my direction.
Stacey Simms 30:23
All right, so you're looking forward to more bolus power.
Yeah. All right. Two more automated bolus power.
Stacey Simms 30:28
Yes. I like that. I'm looking forward to that, too. I'm also looking for better insets As always, because we know those are the weak link of pumping. And I'm also really excited about the smaller cgms that are coming the deck.
I can't wait for the Tandem. The Tsport Oh, yeah.
Unknown Speaker 30:44
What is that supposed to come out?
Stacey Simms 30:45
COVID has knocked everything down. But probably something's coming
to a store near you in 2022.
Stacey Simms 30:51
My guess I mean, it's a guess is late 21. And that'll be fun to try because it will also allow you to try new sites.
Unknown Speaker 31:01
That's really funny.
Stacey Simms 31:02
all right, Benny, thank you so much. Happy diversity.
Unknown Speaker 31:05
Stacey Simms 31:06
I want to give a gift to you. When this airs. It's gonna be an Hanukkah. Say goodbye, like people on your age on YouTube.
Don't forget to like and subscribe and share and comment down and make sure to check out my merchant the description below.
Unknown Speaker 31:19
There you go. Perfect. Bye fam fam.
Unknown Speaker 31:27
You're listening to Diabetes Connections with Stacey Simms.
Stacey Simms 31:33
So I have to say, in between a lot of the silliness, I was really excited to have Benny's answers. We really, he told me a lot, I hope you got a lot out of that as well. And again, at the very end of the show, a couple of I guess you could call them bloopers, although it's just us being ridiculous and silly, if you want to hear that. So that's at the very, very end of the show.
I also wanted to mention the issue that he alluded to there with his Tandem pump, you probably are aware, he uses a tandem t slim X to pump with the G6 from Dexcom. And the whole system together with the control IQ software. We've had that since January of this year. And it really does work like a dream. It's a long story. But I'll try to keep it short here. And the basic problem is that the pump and Dexcom are not communicating as they have been for years and years. So it's really become a problem because the follow app and the Dexcom app are working fine. But the control IQ cannot work when it's not getting a signal from the Dexcom. So we've been troubleshooting this with Tandem for a couple of weeks now. They've been really helpful, but it's just taken longer than it might have. I don't know how to quite put this when I was more in charge. Because Benny is great. But he doesn't tell me right away. So when we troubleshoot and things are fixed, I think they're fixed. And then when I check in with him, oh, no, they're not fixed. So I really had to sit on him for this. And Tandem has been great with customer service. And I think we're almost to the end of fixing it. I'll keep you posted.
I think the only other thing from the interview I might need to explain is that he said something about camp Carolina trails is over, you know, the diabetes camp where he went, basically it was just kind of a change of camp in our area of the ADA had American Diabetes Association had run his diabetes camp like it does so many for many years. But things changed a couple of years ago. And now we have a local group that runs the camp. And it's pretty amazing to have that. They're really cool people and we'll have them on again, I'm sure to talk about all the good stuff that they've done because they do a lot more than camp. It's the diabetes, family connection. They have great Instagram accounts, some other stuff, but very cool people, we're really lucky to have them in this area, and they took over the camp and have done a great job despite what Ben he says he's such a complainer about that stuff.
All right, I want to tell you about our innovations segment in just a new program from Dexcom and Diabetes Connections is brought to you by Dexcom. As I said, we've been using the Dexcom G6 since it came out. It really is amazing. It is now FDA permitted for no finger sticks for calibration and diabetes treatment decisions. You do that to our warm up, the number just pops up. I know it sounds silly to a lot of you who are newer to CGM, that's amazing. It really is wild. to not have to calibrate we have been using Dexcom for seven years and it just keeps getting better. The G6 has longer sensor wear and the new sensor applicator as Benny said it's so easy to use. We still love the alerts and alarms and that we can set them how we want if your glucose alerts and readings from the G6 do not match symptoms or expectations. Use a blood glucose meter to make diabetes treatment decisions. To learn more, go to Diabetes connections.com and click on the Dexcom logo.
Innovations this week a new program from Dexcom. And of course when I talk about them or talk to them I always like to disclose as you've just heard, I just did a commercial for Dexcom and they do pay me to talk about them in the commercials of this podcast, but what you're about to hear is not part of the endorsement, they did not pay me or give me anything to talk about this. I think it's interesting. And I'd love to know your take on it as well.
This is a program called Hello Dexcom. And it is a new sample program. So what's gonna happen here is that people are going to be able to try a G6 system at no cost. They basically get it at their doctor's offices, it says - and I'll link this up in the Facebook group as well and in the show notes on the episode homepage - but it says whether provided to a newly diagnosed patient to get them started on CGM right away, or a CGM naive patient who wants the opportunity to try the device before committing to a personal system. The Hello Dexcom sampling kit allows people with diabetes to experience the life changing power of CGM, they get the transmitter the sensor and access to a digital experience. They call this a 10 day digital empowerment journey to ensure they get the most out of the experience and understand if CGM is right for their personal diabetes management.
Now, I of course had lots of questions. Look, we've said a million times CGM is going to be standard of care. There are 39 CGM systems in development, who knows how many are actually going to come to market in the United States or in other countries, but this is going to be standard of care for people with diabetes. So more people getting on CGM might be a great thing. I don't know, I am always concerned about education. I see it all the time. And I've you've heard me tell this to Dexcom. And to pump companies until the break, people get this stuff on their body, they go home, they don't know how to use it properly. They don't know how to use it to its utmost. They don't know how to use it so that it helps them thrive rather than holding them back. We just need more education. Obviously, this is a soapbox issue for me.
So I asked, and I'm gonna take you through the QA that I did with Dexcom. So this was an email back and forth. I'm going to read you my questions and their answers. If you prefer to read. Look, every episode this year has a transcript. So this will be in the transcript if you prefer to read it. I know especially with my scratchy voice, it might be kind of hard to listen to. It doesn't matter to me, if you want to read if you want to listen, that's going to be the next two to three minutes of the show.
So here's what I asked, Does the patient get the sensor and transmitter with no commitment or insurance coverage? They said yeah, since Hello Dexcom is a sampling program. It's available at the doctor's office comes at no cost to the patient. So I said since the transmitter lasts 90 days, what happens at the end of the 10 day trial period? Does the patient choose to continue on with the same transmitter? Or do they just throw it away? They said at the end of the 10 day sampling period. If the person chooses to stay on Dexcom they will be able to use that transmitter until it needs to be replaced. I'd like to know more I wrote about the digital empowerment journey. What is that videos personalized instructions. The digital journey they wrote is a 10 day email series that walks the user through how to make the most of the GS six. Once a user receives the Hello Dexcom kit. they'll receive instructions on how to set up their online digital journey. They go on to say they'll get the dexcom clarity app they'll share that with the physician once the sample period has ended. There are checkins in the form of email, which share more information they can get custom alerts and allow others to follow through Dexcom follow.
who is the daily check in with I wrote the patient's doctor a Dexcom employee? If it is the latter, is it tech support or a diabetes educator? emails are sent to the patient every other day, they wrote as part of the empowerment journey. But users will also have access to customer support to assist throughout the process. At the end of the sampling program, users will meet with their physician to discuss their experience and review their clarity results.
And finally, I wrote this might be an unpopular question. But I know my listeners will want to know if Dexcom can afford to give away this many sensors and transmitters. Why not lower the price for existing customers? Here's their response. A lot goes into creating this technology. It takes years to develop, study and gain approval. And then of course you have to market it raise awareness and encourage people to use it. The Hello Dexcom sampling program is part of that effort to raise awareness and adoption of Dexcom CGM to help people control their diabetes. They went on to give me some information about coverage. I'm going to link up if anybody does need help paying for their Dexcom. Or if you need information about Medicare and Medicaid, I will link that up as well.
But I think these are questions that need to be asked because from a sales point of view, this is a home run program, right for Dexcom. You go to your doctor, I'm not sure if I want to use a CGM. They have the professional ones they could put on you where you don't see it. These have been around for years and years. They put a CGM on you. But you don't look at the information. The doctor gets it and uses it to help with care. Or maybe it's a way to test out the CGM. But this is a much better way to test out a CGM, right when you get to keep the transmitter when you're done. So this is a really cool program. But I could also see some confusion because we know enough people who get educated by educators right they they meet with the CDE they Meet with a Dexcom trainer. And then three days later, they're in my group saying what happens? Why do I have down arrows? What does it mean? If I have signal loss? Where can I put this on my body and all the things you've seen in all the groups you're in? So I do think that we need so much more education.
But this is a really interesting program. What do you think? Hello, Dexcom? Is that something that your doctor has talked to you about? It's brand new in December, but by the time this episode comes out, it'll be out for a little while, love to hear your thoughts on that. And again, I will link up more information in the show notes.
As we come into the homestretch of 2020. I know most of you cannot wait for this year to be over. But I have a feeling there's gonna be a few interesting technology drops before the end of the year. That always happens in late December. So I am braced for it, which means probably won't happen this year, because I'm ready. But I do have some great interviews lined up, we are going to be heavy on technology in 2021, I have decided, it's what I'm really interested in what you're really interested in. Of course, we're going to tell the great stories from our community. And we're going to keep talking about access and affordability. But I am very excited to talk to new pump companies to talk to new CGM companies to check in with our friends and find out what's happening at companies like Tandem and Ypsomed, and Medtronic and all the stuff that's coming out in the next year or two. So we're gonna be heavy on technology. Let me know what you want to hear. If you work for one of these companies. Come on, reach out, we'd love to hear from you. listeners to this podcast are smart and savvy. And if you let them, they can help you. They're fantastic for focus groups and studies and they really get it so I didn't expect to make a pitch that way. But if you have a pump CGM technology diabetes company, email me Stacey at Diabetes connections.com we can definitely get you the ear of people that are hungry for information, want to hear from you and want to help you because we don't want you to make advances or what you think are advances. We don't want you to move ahead. Without us. We want our input to help make your products better.
Stacey Simms 42:03
thank you as always to my editor John Buckenas from audio editing solutions. Thank you, not only for listening, but for being there. I mean, I'm not just an announcer in this community, right. I'm a mom, you heard my kid. You know, we need you. We need each other. I'm honored a privilege to serve this community. And I'm also so grateful to be part of it. So thanks for always being there. For me. I'm Stacey Simms. I'll see you back here next week. Until then, be kind to yourself.
Diabetes Connections, is it production of Stacey Simms media? All rights reserved. All wrongs avenged?
It's like I've said like 100 bajillion times. And like I just said, What?
Unknown Speaker 42:54
Making a face that you just say it?
Unknown Speaker 42:56
Am I not allowed to go?
Stacey Simms 42:57
Fine. Take your time.
Unknown Speaker 42:58
I'll take a sip of tea.
That's That's her taking a sip tea. You're gonna laugh You are laughing. Tea. Yummy. Here's the tea.
Unknown Speaker 43:20
Oh my god.
I think you should not edit this at all. That's
Unknown Speaker 43:23
gonna go at the end. Oh, that laughing