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Ask The D-Moms: Driving, Independence and "Holding Hope in our Hands"

Diabetes Connections with Stacey Simms Type 1 Diabetes

Release Date: 02/12/2020

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More Episodes

Ask the D-moms is back! We’re tackling leaving kids home alone, keeping perspective when you’ve been in the diabetes community for a long time and driving with T1D. Moira’s daughter was behind the wheel before CGMs and Stacey's son just got his permit.

Check out Stacey's new book: The World's Worst Diabetes Mom!

Stacey mentions a blog post Moira wrote back in 2013 about hybrid closed loops 

In Tell Me Something Good, an amazing way to raise awareness.  We’ll talk about the Run Across America – one man – from Disneyland to Disney World.. and its’ going on right now. More about Don Muchow from Diabetes Forecast Magazine (2019)

Join the Diabetes Connections Facebook Group!

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Episode Transcript: 

Stacey Simms  0:00

Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes. By Real Good Foods real food you feel good about eating 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, ask the D moms is back. We're talking about leaving kids home alone. Keeping perspective when you've been around this community a long time and driving. Moira’s daughter was behind the wheel before CGM, which had one advantage:

 

Moira McCarthy  0:42

The good thing about a blood glucose meter and a driving teenager was I had proof whether she had or had not checked her blood. You are no longer going to have that. And so I don't know other than crossing your fingers and just keeping reminding them I don't know how else

 

Stacey Simms  1:01

I have an idea.

You'll hear what my idea for kids with CGM is. It's something they can do before they buckle up in Tell me something good an amazing way to raise awareness. We'll talk about the run across America. One man going from Disneyland to Disney World. It's going on right now.

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 Diabetes Connections. I'm your host Stacey Simms. So glad to have you along. Hello to new listeners from Maine. I spent this past weekend in South Portland, Maine, talking to the PPODS. I love that name. Parents and providers of diabetic children. It's got a little logo with peas in a pod. Very cute stuff. Now I'm taking a little bit of a chance saying I was in Maine this weekend because as you know, I do tape this podcast a couple of days in advance. And as I'm getting ready to go to Maine right now Actually, it looks like there's some snow in the forecast. So fingers crossed, that all goes well, and that my plane takes off on time, and that I wear the correct footwear. You know, I used to live in Syracuse, New York. I'm from New York, and I lived in upstate for 10 years. I had all sorts of boots and coats, but I moved to Charlotte 20 years ago. Most of that stuff is long gone. So I was really hoping for Sunny dry weather for main. But it looks like that is not to be so yes, I'll be posting on social media about how it goes. But assuming all as well, I make it there and back with no delays. Fingers crossed. I'm sure it'll be a great time. And of course as you're listening, it was a great time.

It's one of those funny things that I thought about a lot especially when my kids were younger about the differences raising kids in the south and in the north. My sister still lives in New York and her kids were growing up. She would send me the cutest pictures but they would in snow pants and snow shoes and jackets and scarves and gloves. And I was throwing my kids at the door, not necessarily with flip flops all year round, but pretty close to it. Benny, I don't think owns a pair of long pants. He basically wears shorts, even when we get a flurry or two here. But I also always thought about diabetes, and how much more difficult it must be to manage all the gear for kids, when they're all bundled up. You know, you do hear about static issues with some of the diabetes technology and other stuff like that. And I was just always really happy that I didn't have to mess with it too much living here in North Carolina.

All right, I'm going to be talking to my friend from the northeast. My friend Moira McCarthy, lives very far from me, but we'd love to get together virtually every once in a while. And I'll be talking to her in just a minute but first Diabetes Connections is brought to you by One Drop. And you know, I spoke to the people at One Drop, and I was really impressed about how much they just get diabetes. And 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. One Drop, diabetes care delivered, learn more, go to diabetes, connections calm and click on the One Drop logo.

My guest this week is my dear friend and fellow D mom. Moira McCarthy, Moira is of course a renowned writer and author, a speaker and advocate, a professional travel writer and much, much more. Her daughter was diagnosed at the age of six more than 20 years ago. And in this go round, I get a little selfish with my questions. Yeah, I have a question for more. You know, Benny just got his permit to drive in early January. And I wanted Moira’s advice. So we talked about that. And we, you're going to hear us kind of puzzle out some things on the spot. We came up with a couple of ideas. And we didn't talk about this ahead of time, and I debated editing some of it out. But I think it's kind of fun to listen to the wheels turn. So you'll hear that and we also talked about when is it okay to leave your child home alone. And then we got on a bit of a soapbox about being blunt, because we're very blunt and the blowback that we both take for that. I will link up all of the stuff that we talked about here, including I mentioned a blog post that Moira wrote back in 2013. And you'll know it when you hear it and I will link it up at the episode homepage. So here is my chat with my fellow D mom. Moira McCarthy.

 

Hello Moira, it has been too long. How are you?

Moira McCarthy  5:45

 

I know the holidays went by 2020 started whereas the year going I am really good. I just got my hair did and while I was there, I was thinking all this is perfect because I'm staying and I are doing the podcast and then I remembered that they can't actually see you on the podcast. So people should just assume I've always had my hair dead right before it I

 

Stacey Simms  6:08

always look beautiful. It's so funny with the show because a lot of times when we do these interviews, you know, you can open up the video window, but half the time I'm in my pajamas, or you know, it's late

at night, and I don't want I don't even want to show myself to the person I'm talking to. Maybe one of these days we'll do a video podcast, but not today. So I've been dying to talk to you because right at the beginning of the year, Vinnie got his permit now in order to drive in North Carolina. I know in North Carolina. No, he's like four. Yeah, exactly. You can get your permit here at 15. And then you can get your driver's license. It's a graduated system, but you can get your driver's license at 16. So a lot of kids like my son at 14 and a half, you know, go to Driver's Ed, and then they take the the written portion, then they take the driving portion and then they're behind the wheel and that's where we are So I was so happy to talk to you because we're a few weeks into this now. But what do you think of driving and diabetes? I know it was a little different when when Lauren was driving, but can you share your experiences on that?

 

Moira McCarthy  7:12

I it wasn't that much different. The first thing I will tell you is Lauren is my second child, my older daughter is four and a half years older than her. And so we had experience teaching a child to drive before and I can honestly say that, I think that Lauren having diabetes made me take it all more seriously and do a better job than I had with her sister. So I think it's kind of a benefit. And one little example I can think of off the top of my head and then we can talk about details about kids with diabetes and driving and what they should do is um, I remember realizing that was really important to teach Lauren, my daughter with diabetes, how to pull over safely if you had to pull over suddenly for some reason for her it would be a low blood sugar or something right. And I realized that I don't think I ever taught my daughter that like, I think if you just say well pull over as soon as you're low, they're going to, they could pull over. And so place it, it's really dangerous to pull over, you know, instead of like go to the nearest exit or, you know, if you cannot make it there call 911 type of thing. And so that's just one example of many that I think that it caused me or led to me to do a much better job.

 

Stacey Simms  8:22

If you're listening and thinking, of course, they're gonna know how to pull over, get me just you've never driven with a new driver, because it's amazing what they don't know. You think they've been your car for all these years? They must pick up on everything. But I never taught Leah, my older child who's now 18 you know, I never taught her how to pull over safely. That's going to be lesson number one when she comes home next,

 

Moira McCarthy  8:41

because seriously, you can say most people must but how many times have you seen people pulled over like on the median strip side instead of the other side of the highway? You know, or or up next? What jersey barrier when you're like, No, no, don't get out of your car there. So as far as kids with diabetes, we were big problem. opponents have a contract for driving. And you sign the contract right at the point that he's at now, when they begin driving, and you sit down together and you discuss it, and there's actually a chapter in my book on driving and there is a sample contract. I'll tell you in a moment what I would add to that, because that was written five or six years ago, but you come to agreements together on what the expectations are, and then you both signed the contract. And for us, we did have low blood sugar amount that we expected her to pull over, if she got that low. And then we didn't really have one for high and we can talk about that if you want to. But our agreement was that if she forgot to check before she drove, she would have the keys taken away from her for a period of time. And sure enough, the first month, she had her license, she did it and I had to take her keys away for within that day, I had to drive her everywhere again. I say well, that's not a punishment if you drove them but it was a punishment. So with the Contract everything is out in the open and clear. And you as a parent have to stick to it and your child has to stick to it too.

 

Stacey Simms  10:06

So when I said things are different, all I really meant was CGM, which obviously not everybody has.

 

Moira McCarthy  10:13

Yes. So I will tell you what I would add to that contract and what I think about CGM and then we can talk about it more. I personally think it's super important that your children never ever, ever, ever look at their CGM while they're driving. Now, that doesn't mean they shouldn't use it. But just like a cell phone, it should be put away somewhere. And if they hear the sound, they should proceed to a place where it's safe to pull over and look at it pulled over. Because you know, and I know, it only takes two links of an eye if that for a kid to look down at something else, and look up and end up in a bad situation in a car.

 

Stacey Simms  10:52

Yeah, that's a great point. I was just thinking of checking the CGM when you start the car and I think a lot of people would be okay with their kid glancing at it rather than doing the finger stick. That's a personal thing I think that parents have to decide. But what's interesting is so Benny has an app from, I guess it's from the DMV, it's probably not, it's probably from a third service that the NC the North Carolina DMV is working with. But it's an app on his phone to keep track of his hours of driving. So instead of filling out the piece of paper that my daughter did just a couple of years ago, when he gets behind the wheel, he first opens the driving app and clicks on or whatever the heck he does. And then he opens the CGM app, and looks at that as well. Yeah, so I'm really happy because he's getting in the habit of just checking something, right. He's got to pull out that driving up every single time. So we're making him look at the CGM, too, but it never occurred to me to tell him don't look at it while you drive. I mean, obviously, his phone has to be away and that sort of thing. But I can see where he would think, well, this is a safe thing to do. I'm trying to figure out what my blood sugar is.

 

Moira McCarthy  11:52

Yeah. Every time I mentioned it to a parent, they're like, but but it's safe because it's their blood sugar. I'm like no. You cannot let a teen or any driver for that matter. Look down at a screen when they're driving even if you feel like they're just glancing. It's in my opinion, the most important thing and driving and CGM is that.

 

Stacey Simms  12:13

Yeah. And just a little bit of a heads up for people who may not know. And I'm going to say this, but I'm going to give a warning, my own warning at the end. You can now if you use a dex calm, and maybe there's other CGM that will do this. You can now say, hey, Siri, or Hey, Google, what's my blood sugar, you can actually do that in your phone. However, I still be really careful about that while you're driving. I don't think a lot of teams are driving for hours and hours and need to constantly assess their blood sugar. So that's my warning is even with that. I would still not want my child constantly checking blood sugar. So I just don't think it's safe and it didn't occur to me until you brought that up more.

 

Moira McCarthy  12:48

The interesting challenge for you parents, such as yourself, putting Benny on the road is the good thing about a blood glucose meter and a driving teenager was I had Proof whether she had or had not checked her blood, you are no longer going to have that. And so I don't know other than crossing your fingers and just keeping reminding them. I don't know how else

 

Stacey Simms  13:13

I have an idea. contract you get behind the wheel, you take a picture your blood sugar, you don't need to send it to me at that moment.

 

Moira McCarthy  13:21

That's a really good idea. But I wouldn't make them I send it to you because I'm not sure that I would sit home. Let's talk about this because I don't know the answer. Will you sit home and watch his blood sugar's on his CGM when he's out driving around in the car? Huh? Well, I don't know. I think I would say no, but

 

Stacey Simms  13:44

Well, I'm gonna say I'm going to be honest. I'm going to say I will glance at them, but I will rely on the alarms. So I think and he and I will talk about this as it's funny to think about this as we're recording, but I think what we'll do is if he hits a certain number, then you can expect a phone call For me, not a text, you know, but maybe a phone call, but I don't think that number is going to, it's going to have to be low, you know, and just to check in on him, but I also don't want to distract him. So yeah,

 

Moira McCarthy  14:12

this is a good question.

 

Stacey Simms  14:14

But all the phone calls now we're you know, we're hands off. So but there's but it's also not legal in every stage talk on the phone when you're driving. Oh my gosh, what a thing we've gotten ourselves into.

 

Right back to us try figure it all out. But first Diabetes Connections is brought to you by Real Good Foods. I love this stuff. They're so easy. They're so convenient, and they're good and they're good for you. One of the fun things about going to the Real Good Foods website is not only can you see all of the products, I mean, I usually buy it in our grocery store. It's really nice to just have it in the freezer there but all of the products are online, and then you can go into recipes. And if you've heard me talk about this before you might be thinking recipes isn't the stuff pretty much ready made. It is But then they have all this fun stuff you can do with it, and different ways to prepare it and mix and match a stuffed chicken power bowl. Spicy Italian sausage lasagna. I'm not sure what this is about pizza fries and ice cream. Okay, you're gonna have to go check it out and see the recipe for yourself. They have a lot of great offers, and you'll find out what makes them so good, but you really don't know until you try them. Find out more just go to diabetes, connections calm and click on the Real Good Foods logo. Now back to me and Moira and we're working out this driving and CGM thing in real time.

 

Moira McCarthy  15:43

No, I think this is really good. I think we can think this through. I think that what I would do is, like you said set a parameter but also if I see it, give it a little bit of time. Like I wouldn't assume the minute I see it, that he's driving and not Although I don't know, I think the best thing I know everybody's doing it a different way now, but I think the best thing might be not to watch them from home because they need to learn how to manage their blood sugars in the car on their own.

 

Stacey Simms  16:15

Yeah, I think I'm still gonna have him take a picture every time I begin.

 

Unknown Speaker  16:20

Yeah.

 

Unknown Speaker  16:23

You just have to send it to me.

 

Unknown Speaker  16:24

Right? And then every once while like I would

 

Stacey Simms  16:27

do, you could say I'm

 

Moira McCarthy  16:29

just gonna take a look at that. Just show me and then you see. And also even if you never say that, he knows that you have the ability to ask him. That's the secret. I think that's a very good idea, Stacy.

 

Stacey Simms  16:40

Why thank you. It's you win. Please trust but verify. I'm gonna talk to Benny. Maybe we'll follow up on this a little bit more and kind of see how it goes. But when I didn't I meant to ask you earlier when you took Lauren's keys away. I'm curious because she's such a shy and retiring type of person. How did that I mean, obviously she learned from it. It was important but she she was probably pretty upset.

 

Moira McCarthy  17:01

She was upset, but not at me because we had that contract. And so it wasn't like I was saying, Oh, you did this and now this is your punishment. She made a decision to do something, knowing what the outcome would be. And so she was mad at herself.

 

Stacey Simms  17:19

Hmm. Right. I got to get a contract ASAP. Yeah, you work? Yeah, it does work. We did it for social media. I do and it definitely works. Okay,

 

Moira McCarthy  17:27

great. parents with kids without diabetes or learning to drive need one that like I said, I learned so much from my second kid with diabetes driving that I should have done with my first one. So,

 

Stacey Simms  17:37

alright, so on to the next question, which was not for me. And thank you for answering my question and letting us hash this out a little bit. So I was at an event in South Carolina recently, and it was so cute. There was a mom with a daughter who was diagnosed about a year ago, the little girl was seven. And at this event I mentioned Okay, my husband's out of town. I'm an hour and a half away from home. I was in Columbia, South Carolina. Ben, he was home alone, Benny was not only home alone, he had gotten himself a ride home from wrestling practice, he had made dinner I don't even I'd left him some food, but I really don't know what he ate. And I was not going to be home until about 10 o'clock at night. And I shared that with the audience because I had my cell phone out, just like you do with any kid just in case diabetes or not, you know, thing if your parents was the closest, and they needed to be around, and so I could make a joke about I don't know what he's eating for dinner and that kind of stuff. We didn't talk about it very much. But at the end, that parent and little girl came up to me and the little girl was like mom asked her a mom asked me Well, how old do you think kids should be when they can stay home alone with diabetes? And the little girl is so cute because she's like,

 

Unknown Speaker  18:40

I told you I told you I'll be old enough.

 

Stacey Simms  18:46

So this is a good topic because as usual, it doesn't just happen. You know, you plan for things and I should say, because I was an hour and a half away and I did this with my older child to my neighbors are great and I have friends you know? 10 minutes. away, I had two people that were on, as I like to call it, they're on hot standby, not necessarily for diabetes, but like if you can't get a ride home from wrestling, or if I don't know, lightning strikes the house, you know, whatever. Right? So what what are your thoughts on leaving kids home alone with diabetes?

 

Moira McCarthy  19:17

So I know that I sound like a broken record. But ask yourself what you would do without diabetes on board? And that should be your answer. I honestly did not see. And Lauren was my second child. So I did have a child that I had to make those decisions with before. I didn't see any reason that diabetes would make the answer any different. Now, the answer is super complicated, because in some states the legal question and in some states, it's not and then some situations parents are in desperate situations where they're going against something they may want to do. And so it's a complicated thing. So the way it worked for me in our town, you can take the babysitter training course when you're 11 and a half. And so that's when kids in our town between 11, a half and 12, that's when they kind of start babysitting a little. And so I backed it off from that by about a year to a year and a half. And that's when I would start like leaving them for short periods of time. Or if we were just going to a movie that was 10 minutes away. And as you said, always with you know, Mrs. Jones is home across the road, if you can't get me type of thing. And so I don't really see any reason, and maybe you can tell me what the reasons are. Why that answer would be different with a child with diabetes. And I say that I raised a child with diabetes, I fully understand all the responsibilities they have, but they should become just sort of a part of what they do and how they live and how they do all the other things that Everybody else does when they do it. What do you think? Am I wrong?

 

Stacey Simms  21:04

Yeah, unfortunately, I'm, I'm going to agree with you. We're going to be nice and boring here. And I did pretty much the same thing. Yeah. I quit. But I can play devil's advocate in a moment. So we did the same thing in fifth grade. And I think that's when they're 10 or 10, or 11. But it was fifth grade, specifically, that I started leaving my kids home alone. Leah was the older child. And then same thing with Benny, and it was a quick trip here or going there. The diabetes definitely made me more nervous. I would have to write it right. I think it's important to say when we're saying this, you know, it's not. I know, you're not just cavalierly, although Lauren could probably run the town by herself at age 10. You know, you weren't just cavalierly, oh, it's fine. It's fine. You have to do a little bit more. But I do think the fear is, especially with CGM, which helps but also shows you everything. The fear is the kids going to be reading a book in the chair and then just fall over people are concerned That their kids gonna play a video game and forget to look at their CGM or check their blood sugar. And they're going to collapse. I mean, let's call it what it is. People are terrified to leave their children alone because they're afraid of the worst possible scenario. I mean,

 

Moira McCarthy  22:12

what kind of video game?

 

Stacey Simms  22:17

But you know what's really funny is a lot of times, this is a real thing. Kids get so distracted. And I have one of these, they get so distracted with some of these high intensive video games, that they don't release their blood sugar's low until they stop playing, or that their blood sugar's really high. Now, it's fine, because they stopped playing and say, Oh, I really low and then they treat, right? Or they stopped playing say, Oh, I'm really high and they take some insulin. So it's not that big a deal. But I think once you see that happen, you're thinking, well, what if I wasn't home? And the answer is, if you weren't home, the kid would treat the blood sugar, right?

 

Moira McCarthy  22:49

And that goes to the perception that many have that if their kids blood sugar's low, and they bring them something or something that they're quote unquote, saving their lives. Yeah, and I think that they really believe that but what I always say it's kind of like saving a life sort of the same way, if someone's really hungry, you feed them. You know, I mean, I don't know of any cases of kids just falling off their couch and dying from diabetes. I know that cars hit houses randomly while a kid sitting on a couch or lightning strikes the roof or a tornado comes. In other words, people die. I just don't feel like there's that kind of urgency. Now. That's an educated child who knows how to take care of themselves. I'm not talking about a child with special needs more, or one who's newly diagnosed and has absolutely no idea or the rare rare case of the true hypoglycemic kind of where person which is a whole different ballgame and frankly, doesn't really exist in children. So it's sort of not in this conversation. But I think that if people could understand that those arrows are not even though You can make it have a siren sound, it's not really

 

Unknown Speaker  24:02

an ambulance situation,

 

Moira McCarthy  24:05

that might make it easier to do. And of course, all children are different and all children are unique. And there may indeed be a 16 year old boy who still needs a babysitter for different reasons. But just speaking in generalities, if your child has been educated about their diabetes, and they're within the age that you would leave them alone, it's more about you than about them, leaving them alone, I think.

 

Stacey Simms  24:28

Yeah, I agree. I agree. You're not you know, you have to decide. And I saw this at another event I went to we were talking about sleep overs, you really have to decide that your child is not on death's door when they're diagnosed with Type One Diabetes. And I know you and I both get a lot of flack. A lot of people who will not say this publicly, but will dm us and email us and tell us that we're wrong, but we're not. You have to decide that your child is not on death's door with type one, or you won't live life and this is one of those tiny little things that you may not be thinking it as you listen, but if you're reluctant to leave your 13 year old home loan? And the answer is because you're afraid they're going to go low while you're not home and collapse and die, then I don't know anybody else more who speaks this bluntly. And it drives me a little crazy. I think when we speak so bluntly, it's a little scary. But it's also honest. And it's important, because when you have this kind of fear, you have to name it. And you have to talk to your endocrinologist about it. If you have this kind of fear, you know, and just find out about it.

 

Moira McCarthy  25:22

It's really interesting you say this, because I've thought a lot about this in the past 24 hours because of something that was written and perhaps you can link this to this podcast this month, which is rensis new article. Yeah, about how she almost walked away from it all. And I will be honest with you, and I think this might be important to talk about in in that I know there are people out there because I'm listened to widely and read widely, who think I am just the most fun feeling uncaring person in the world because I say to them, you could move past your fear and you could do it for the sake of your child and you don't need to have this fear and they therefore Fear is so part of them, which I get that they take it as a personal affront. And I had been thinking, you know, maybe it's time for me to stop saying it. Maybe it's a different world and thank god my daughter grew up before everybody was as afraid as they are now. We were all afraid we're humans, but then I read rensis thing and I was like, no, it's okay to be blunt. Sometimes, you know, it's that old song cruel to be kind in the right measure. You're doing it for the best reasons. And and when I see parents who are so scared and so paralyzed and passing it on to their children, if they think it or not, or not passing it to the children, just their affiliate that way, it breaks my heart because I know in 95% of the cases, that doesn't have to be the case, right? Yes, yes.

 

Unknown Speaker  26:43

Yes. Well, I know she was saying

 

Stacey Simms  26:48

it is it's very difficult, but I'm glad you're sticking around. And you know, it's funny, you mentioned you are widely read, and it brought to mind this year, in the last couple of weeks. Of course, we've all seen the big excitement over control IQ with the tandem insulin pump. as Laura and I are speaking this is at the very beginning of this. So I don't have anything to say yet about our usage of it. By the time it airs, I'll probably have a lot to say. But every time I think of closed loop and this is a hybrid closed loop, I understand but every time I think of artificial pancreas more I don't even know if I've ever told you this. I remember where I was when your column came out. And I read it called something like I held hope in my hand

 

Moira McCarthy  27:26

is held in my hand. So it was about Anna Floreen. Oh, yes, yes.

 

Stacey Simms  27:30

I was at the Honda dealership in Ft Mill, North Carolina, waiting for my van to be serviced. And I was crying.

 

Moira McCarthy  27:41

And it was believable. That was the first time that anything that treated diabetes that way existed outside of a hospital setting. Yeah, that day and I met her for lunch. She had to stay within three miles of the hospital, but she could go out So we met for lunch. And it was the first time I had watched Anna, not have to weigh what she was eating that way with the scale. But you know what I mean? Right, right. It just blew my mind. So Wow, that's a good memory for me. I got kind of choked up when you brought it up.

 

Stacey Simms  28:15

Oh, absolutely. And of course, this isn't exactly that. It's not the I don't remember what software was being tested. And you still have to count carbs and do that with this with control IQ. But I think of you. And if you're not familiar, Moira and I are friends now. But I was just a fan back then reading all of her blogs and books and everything. And so I wanted to ask you, because then I don't know what year that was. But you know, you've been in this world for a long time. You know, born was diagnosed 22 years ago,

 

Moira McCarthy  28:43

almost 23

 

Stacey Simms  28:45

years. 23 years ago. Two and a half. Yeah. All right. So I don't know if you can answer this question. You know, we've been into for 13. And I feel like sometimes, as you mentioned, you're thinking, well, maybe I should stop talking about it. You know, how do you how do you kind of keep on going, going going because I've I really hope you continue to do so. It's a very selfish question.

 

Moira McCarthy  29:05

It's a good question. And I remember a million years ago, I, I'm going to say was 1999 or 2000. So I had been in the diabetes sphere for Lauren was diagnosed in 97. And I went to my first jdrf International Conference they used to have, and there were all these people who were doing so much and were so smart and knew about all the research. And I got up and I asked the question, they were also hopeful. And I asked the question, is your hope real? I want someone who's been in this for a long time to answer is this hope real? Because I don't want to hang out find out in 15 years, like this is all just some stupid cult, you know? And this woman named rd Johnson got up, and she's very well known in the diabetes community look her up but um, she said, I think it had been like 15 years since her son have been diagnosed at that point. And I remember thinking, wow, and she's still involved. Team. I know I'm going on. I mean, I waited a year till I got involved. So it's been 21 going on 22 years. So, but I think it's a really good question. And I'm going to say that it's not easy. But I have a couple reasons to keep pushing. And most of my friends who were super involved, sort of start dropping away about 10 years ago, there are not that many of us who have been constantly involved for two, three decades. Yeah. But the first thing is that I really did make a promise to my daughter when she was diagnosed that I would try until there was a cure. And I think she would totally understand if I said right now I'm over it. I did the best I couldn't image for but that's as far as I can go. But I, I want to appreciate and respect that promise. So that's the first thing and I'm very thankful for the jdrf ride to cure because that makes it more palatable at my point to be involved. I would feel weird doing a walk to Now you know what I mean? I do and I do like riding my bike. And I like the people who are there. And I'm thankful to all the people who donate I mean, I just registered to ride like two days ago, I think I have almost $5,000 and people are so good. And then the second thing is, I have to find some positivity out of all this for me, I have the positivity for my daughter's easy. All I have to do is look at her and see her career, her life, her happiness, it's all good. But I have to get something out of this for me because raising a child with diabetes is is a lot. And I think for me what it is, is if I can share my mistakes and what I learned from it with people now and if they can believe me, then maybe I can make it easier for someone else and that makes it worth while what I went through. Does that make sense? Does that sound hokey and stupid? Oh, it

 

Stacey Simms  31:54

sounds wonderful and genuine. Yeah, it really does.

 

Moira McCarthy  31:58

It gets harder and harder. Because I know that I'm people think I'm a dinosaur, but what I understand is, I'm kind of a dinosaur, but I'm a dinosaur that's evolved. Like, I understand technology and respected and I know what's going on. Do you know what I mean? It isn't like I'm stuck back in barefoot and that was fine.

 

Stacey Simms  32:20

I know the trick that I know you're trying to pull here is using technology to the best of its ability to help us and not hold us back.

 

Moira McCarthy  32:29

million percent. Yeah, we know it's so happy. So happy.

 

Stacey Simms  32:33

Yeah, it's and another thing that you said that I just want to bring out if you know as you listen, a lot of newer people we mentioned control IQ. And you mentioned jdrf Moira, and I think this is just another reason to stay in the game. You may not realize as you listen, that control IQ way back in the day was called tape zero technology and type zero technology came out of University of Virginia. Maybe you know that if you listen to this podcast, but you may not know That the first funder of type zero technology was jdrf. And without the biking that you do more and the walks that so many other people do, and the fundraising that goes on, you know, the control IQ and other closed loops, hybrid closed loops, I need to be careful. You know, it's not going to happen. And I know a lot of times like, because I see the comments, people don't know that jdrf does these kinds of things. They just kind of think it springs up. But I wanted to tie all that together. As you mentioned it since we already talked about it this episode, and it's just really important to me to have that link. If that makes sense. I feel like I'm helping

 

Moira McCarthy  33:38

even further back from that type zero, when the very first continuous glucose monitors came on the market. No one was buying them. They weren't getting any attention. Zero insurance companies were covering it. And so at showed her up and I was one of the lead people on this. I chaired advocacy nationally and stuff like that at the time, but a whole team of us The first thing jdrf did was no company wanted to fund studies. The NIH didn't want to fund studies. No one cared about CGM. So jayda funded studies in six centers across the country, on children and adults in CGM. And those were the very first studies that showed that they would make any difference. And that's when companies started saying, Hmm, maybe we might want to invest in this product. So then companies invest in the product. And what we did is we physically and I was one of these volunteers found people in large insurance companies, because no one was covering them, and filled out their paperwork with the mic by hand, got them covered in all the big companies. So then we could say, well, there's a precedent for you, someone's been covered in your company. And that's how they got covered. So that's all I just thought that was an interesting little It

 

Stacey Simms  34:48

is alright, we'll have to talk to jdrf. We're going to do the Time Machine thing where we go back and talk about CGM and the artificial pancreas project and all that kind of good stuff. A great idea. Yeah. But more thank you so much for popping on and sharing some of your wisdom. We're not doing this every month like we were last year, but we'll do it here and there.

 

Moira McCarthy  35:07

Yeah. Thanks for having me. It's always good to catch up.

 

Stacey Simms  35:09

All right, and I'll be consulting your book for Benny's driving contract as soon as we

 

Moira McCarthy  35:14

add the CGM thing. Don't forget no looking at your CGM. I love

 

Stacey Simms  35:18

  1. Alright, thank you so much talk to you soon.

 

Unknown Speaker  35:25

You're listening to diabetes connections with Stacey Simms.

 

Stacey Simms  35:31

I'll link up all the information on things we talked about at the episode homepage at diabetes connections.com. And wherever you listen to the show, a lot of people listen through social media or on apps. That episode homepage has all of the information. And starting this year, every episode has a transcription as well. So go ahead and please check that out. Isn't it funny though, how I remember that blog post and exactly where I was when I read it. It's just funny how things stick with you and I can't believe it was more than seven years ago. Now. Oh my goodness.

All right, I will have Tell me something good in just a moment. But first diabetes Connections is brought to you by Dexcom. Do you know about Dexcom clarity, it's their diabetes management software. And for a really long time, I thought it was something just our endo used, but you can use it on both the desktop or as an app on your phone. It's an easy way to keep track of the big picture. I have been checking it about once a week, I'll be honest with you, since we switched over to the control IQ software, I am checking it more often. Just because this is new, and I want to see the trends, but it really does help us dial back and see the trends and not overreact to just what happened one day or one hour. Those overlay reports help the context of these glucose levels and patterns and you can share the reports with your care team, which makes appointments a lot more productive. managing diabetes is not easy, but I feel like we have one of the best CGM systems working for us. Find out more at diabetes connections calm and click on the Dexcom logo.

 

A couple of days ago, Don Muchow took off running, and he is not gonna stop for quite some time. Don is running across America took off on February 1, and he is estimated to reach the finish line on May 8, he is heading east started in Newport Beach, California. And the plan is to run 2830 miles in less than 100 days. The goal here is to make the fastest to Wendy crossing to date because other people have done this. But he also hopes to compete the first ever solo run by anybody from Disneyland to Disney World. I will link up all about Don because this is obviously not his first time doing something like this, although I think this is the longest one, but man, it's wild and he's got the whole route. You can support him. You can can track him, you can join him. He is doing this with the support of many people and not least of which is coming from his wife who's driving the support van. And one of the things that stuck out to me as I was reading about Don, is that he didn't do his first five K, until he was 43 years old. He was diagnosed at the age of 12, in 1972. And at the time, they really thought it was just too dangerous. You know, there was no easy way to check blood sugar in those days. So they said, you know, skip gym class, don't do a lot of physical activity. And he says he followed those instructions for a long time. But when he was 44 years old, he needed treatment for diabetic retinopathy. And then he decided, look, it's only going to get worse if I don't make some changes. And that's when he decided to start running. Well actually started walking.

And this is a great article from diabetes forecast magazine. I'll link this up, and you could read the whole thing. But he didn't start out with an iron man. He and his wife decided to start eating less and then they started walking. He said it was boring at first, but then it got more fun, bigger accomplishments. And then he ran his first five K. And he went on from there. He eventually founded a chapter of the diabetes and exercise Alliance, which is a community of people who are really active with diabetes. And really active seems like an understatement when you're talking about crossing the country, just on your own power. There are two people with type one who have done this before we actually spoke to one of them. We talked to Noah Barnes and his dad, Noah walked in 2017 spent the whole year basically, and is holds the record for the youngest person to cross the US on foot. So I'll try to catch up with Don as he is on this journey or shortly after, but again, I'll link up all of the information because the route is there, how to support him, his there and all the dates and everything else. So I urge you to follow along and they're also posting all this stuff on Facebook to T one determined all one word, Type One Diabetes run across America. The page and he's reporting you know everything blood sugar's food, sleep, whatever you want to know. This is great. We're all behind you done. Good luck. Tell me something good.

 

Quick little update on Benny. Many of you have been following his injury this year he started out on the high school wrestling team. And the got pretty badly injured in October needed knee surgery. It wasn't really wrestling, it was just bad luck. So he is doing much better now. He's been off the crutches since the beginning of January, hallelujah. He's feeling great. He is dying to get cleared or ready to wrestle, but it looks like he's not going to make it by the end of the season, which is really the end of this month. But you know, it's hard to have perspective when you're only 15 but the doctor is really looking at this as a long term issue and doesn't want him to have any problems when he's 30. I think Benny would trade that right now given the choice to wrestle a couple a match. But of course, we're gonna kind of let him and luckily his coaches gonna let him either. I'll keep you posted as that goes because we were really in interested to see how he would do with diabetes. We got the blood sugar stuff kind of under control at the beginning of the season after some serious lows and some big problems with I mean, he had one practice I told you where he 75 uncovered carbs, holy cow. It's such intense physical activity. But we're more concerned and curious now about keeping gear on. Because when he actually wrestles, which he hasn't done yet, he's done it in practice. But you know what I mean, we had to figure out where to put the Dexcom the pump, he wears a tend to pump, he can just clip that off for the match. But the Dexcom is gonna be really interesting. So I'm talking to some people who are in the wrestling community. And we're going to figure this out because he will be back on the mat soon, even though the season's over the club season apparently will continue and he really wants to participate in them. So I hope it continues. It will be fun to see and I hope we can experiment with different places to put the decks and see what goes on with that.

My next trip is in March 1 weekend in March. I will be in Wilmington, North Carolina. Really excited to go to their first JDRF summit there. It's gonna be a little cool to hit the beach but Wellington's always a fun place to go hang out. thank you as always to my editor john kennis from audio editing solutions. Thank you so much for listening. I'm Stacey Simms and I'll see you back here on Thursday for our minisode

 

Unknown Speaker  42:20

Diabetes Connections is a production of Stacey Simms media. All rights reserved. All rounds avenged

 

Transcribed by https://otter.ai