Diabetes Connections with Stacey Simms Type 1 Diabetes

The T1D news show you've been waiting for! Long-time broadcaster, blogger and diabetes mom Stacey Simms interviews prominent advocates, authors and speakers. Stacey asks hard questions of healthcare companies and tech developers and brings on "everyday' people living with type 1. Great for parents of T1D kids, adults with type 1 and anyone who loves a person with diabetes.
RSS Feed Subscribe in Apple Podcasts
Diabetes Connections with Stacey Simms Type 1 Diabetes









All Episodes
Now displaying: Category: athletes
Sep 13, 2022

Doug Scalia has completed 25 marathons in 15 states. He’s about to add three more to his list, including the New York City Marathon as part of a team of people with type 1. He knows it sounds like an impossible feat for many, but he says anyone can do it! Doug was diagnosed as a young adult and he’s also played in the World Series of Poker so we have a lot to talk about.

This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

Learn more about Beyond Type Run and Doug's team

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

Join the Diabetes Connections Facebook Group!

Sign up for our newsletter here

Episode Transcription Below (or coming soon!)

Please visit our Sponsors & Partners - they help make the show possible!

*Click here to learn more about OMNIPOD*

*Click here to learn more about AFREZZA*

*Click here to learn more about DEXCOM*

Jul 26, 2022

Sebastien Sasseville recently completed The Race Across America, a grueling 3-thousand miles coast to coast cycling event that riders must complete in only 12 days. That means pushing through not just diabetes, Sasseville lives with type 1, but also eating on the bike and sleeping just a few hours at a time.

Sasseville has been an ultra athlete for two decades now. We get more details about this race, why he wanted to do it and how he managed type 1 throughout.

More on Sassville here:

This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

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

Join the Diabetes Connections Facebook Group!

Sign up for our newsletter here


Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!

Episode Transcription Below (or coming soon!)

Please visit our Sponsors & Partners - they help make the show possible!

*Click here to learn more about OMNIPOD*

*Click here to learn more about AFREZZA*

*Click here to learn more about DEXCOM*

May 24, 2022

Mike Joyce is out there – somewhere – on the Pacific Crest Trail. He set out a couple of days before this episode airs, on a 2600 mile long distance hike. It's part of his attempt to complete what’s called the Triple Crown of Hiking. He’s already done the Appalachian Trail and the Continental Divide trail. Only 535 people have completed the Triple Crown. Mike lives with type 1 and he’ll share how he went from pretty sedentary to long distance hiker and how he manages his diabetes on these incredibly long and challenging hikes.

This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

Follow Mike on Instagram

Learn more about the T1D Exchange 

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

Join the Diabetes Connections Facebook Group!

Sign up for our newsletter here


Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!

Episode Transcription Below (or coming soon!)

Please visit our Sponsors & Partners - they help make the show possible!

*Click here to learn more about OMNIPOD*

*Click here to learn more about AFREZZA*

*Click here to learn more about DEXCOM*

Apr 12, 2022

Sage Donnelly started kayaking with her father at age two, when he'd sit her in the boat next to him. She was diagnosed with type 1 diabetes at age 3 and got right back in the water. After watching competitions for several more years, at age seven she told her parents she wanted to compete. She wasn't kiddng!

Donnelly was the Jr. Women’s Freestyle World Championship and earned a spot in the Olympics. More recently, she's decided to go in another direction and shares what prompted the change. We talk about how she keeps her diabetes gear protected in the water, treating lows during 3-day remote adventures and more.

This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.


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

Join the Diabetes Connections Facebook Group!

Sign up for our newsletter here


Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!

Episode Transcription Below (or coming soon!)

Please visit our Sponsors & Partners - they help make the show possible!

*Click here to learn more about OMNIPOD*

*Click here to learn more about DEXCOM*

Dec 28, 2021

Peloton instructor Robin Arzon was diagnosed with type 1 as an adult, when she was already an endurance athlete and marathon runner. After her diagnosis, she was determined to keep those incredible fitness feats coming. Arzon is now Peloton’s VP of fitness programming, an ultramarathoner, a best-selling author, a new mom, and more. If you’re looking for some new year fitness inspiration, she’s got you covered.

This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

More about Robin Arzon

More about Gvoke HypoPen

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

Join the Diabetes Connections Facebook Group!

Sign up for our newsletter here


Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!

Get the App and listen to Diabetes Connections wherever you go!

Click here for iPhone      Click here for Android

Episode Transcription Below:

Stacey Simms 0:05
This is Diabetes Connections with Stacey Simms.
This week, peloton, instructor Robin Arzon was diagnosed with type one as an adult when she was already an endurance athlete and marathon runner. after her diagnosis, she was determined to keep those incredible fitness feats coming.

Robin Arzon 0:24
I really have had to treat myself kind of like an experiment like get curious and just see and trust that even on the days that aren't my best, I'm trying my best and my best is good enough

Stacey Simms 0:35
Arzon is peloton’s vice president of fitness programming an ultra marathoner, a best selling author, a mom, and more. If you're looking for some new year's fitness inspiration, she's got you covered.
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'm always so glad to have you here, you know, we aim to educate and inspire about diabetes with a focus on people who use insulin. this time of year I always seem to have a fitness interview, right? That makes sense. It's the new year we're making resolutions. We're getting motivated. So you know, take a look back in years past I talked to Chris Rudan from the Titan games. I talked to Eric Tozer, who did seven marathons on seven continents in seven days, you know, stuff like that. But you don't have to have these incredible achievements, these these incredible goals. You know, this to be fit to stay healthy. I mean, I'm certainly never doing an ultra marathon. It's not one of my goals, especially as I get older, I want to stay moving. That's really important to me. So well, somebody like this week's guest Robin Arzon isn't I'm sorry, Robin isn't going to motivate me to ever run a marathon. She is going to inspire me to try a little more to do some different things. And I hope she inspires you in the same way as well. Whatever your fitness goals are for 2022
I have a story that I want to share about something that happened recently with me and Benny, it isn't really about new year’s resolution. So I'm going to keep it till the end of the interview. I'll come back and tell you he challenged me to do some things kind of an empathy exercise about type one, I failed miserably. That's the spoiler. So we'll get to that in a little bit.
This week's interview is one of my shortest ever I had very limited time with Robin. So I decided to not ask her about her diagnosis story. I skipped a couple of questions that I would usually ask, but in case you're not familiar with her, I wanted you to learn more. So here is a quick explainer that she gave beyond type one a few years ago, and we're playing this with their permission.

Robin Arzon 2:32
I am a reformed lawyer turned ultra-marathoner. I'm head instructor at peloton cycle as well as vice president of fitness programming. I'm on the Leadership Council beyond type one. I was an endurance athlete Well, before I was diagnosed with type one diabetes, I was diagnosed in February of 2014. So only a few years ago, as an adult, I was in my 30s when I was diagnosed. And it's been an interesting little dance I'm doing with my pancreas these days.
I had just returned from a trip to India. I was in India for about three to four weeks with my mom and my sister. And when I came home back to New York City, I thought I had jetlag or something like my body just felt really sluggish. And I had extreme thirst. That was the number of extreme thirst and frequent urination. And that was the number one thing that really was strange, because I know it wasn't dehydrated. And as an athlete, I kind of could tell immediately that something was off with my body. I had an awareness of type 1 diabetes, but certainly not on any kind of medical or even practical level. And I definitely didn't know how to how to live with it. That was actually my very first question after I was diagnosed was how am I gonna run 100 mile races? And that was a question pretty unfamiliar for my endocrinologist and so then I want an immediate search for all the technology that would allow me to train uninterrupted. I actually had a half marathon two weeks after my diagnosis and I and I ran it. And I think I was on a pump within a week that I had a Dexcom within 14 days.

Stacey Simms 4:27
Robin was diagnosed in 2012. She's now peloton vice president of fitness programming. She and her husband had a baby in 2021 and January just a couple of days from this episode going live. She is publishing a children's book and you will hear her talk about that. There is a video of this interview over on the Diabetes Connections YouTube channel if you want to watch I will link that up in the shownotes.
Full disclosure. The reason I had limited time for this interview is because Robin is on a media tour courtesy of Gvoke Hypopen so you will hear a lot about that in this interview ended agreed To do this, I also agreed to post information about Gvoke in the show notes which I have done. If you've listened for a long time, you're probably tired of hearing these disclosures. But if you're new, it's very important to me that I'm open and honest about what you hear on the show. And I really thought the tradeoff of hearing about Robin’s experiences and advice was worth it.

Robin, thank you so much for joining me and spending some time with me and my listener. So how are you doing today?

Robin Arzon 5:29
I'm great. So nice to speak with you. Stacey.

Stacey Simms 5:31
I know that you have a little bit that you want to talk about with Gvoke. They are a sponsor of my podcast as well. Let's just dive in and talk about that because being prepared is just part of the reality when you live with diabetes, right

Robin Arzon 5:42
100% I mean, in the landscape of things that are uncontrollable of living with diabetes and diabetes management, we have to control what we can control and Gvoke Hypopen is the first auto injector of medicine if we have a severe low blood sugar event, and the looming prospect of that can be scary. And as an ultra marathoner as someone who lives as an athlete lives with movement, you know, and I know your listeners are very, very well versed in the diabetes landscape, and probably can relate to that to a certain extent. I needed to take agency back, which is why I partnered with Gvoke Hypopen because recently, for example, when I ran the New York City Marathon, I had the Gvoke Hypopen in my race kit. Thankfully, I didn't need to use it. But it does give me peace of mind out there on the racecourse, you know, knowing that I have this medicine accessible to me, if I have a severe low,

Stacey Simms 6:31
I'm going to knock wood everywhere I can find some because yeah, I've had to use Gvoke or any kind of emergency glucagon in the 15 years since my son was diagnosed, have you ever had to use anything?

Robin Arzon 6:41
Thankfully, no, thankfully, I have not had to use it. And I'm very grateful for that. And I'm also grateful that I sought out the right care for myself. And I advocated for myself with my doctor. And I recommend folks do the same and of course, do their own, you know, investigation of safety and risks and allergies and all the things associated with with any medical prescription. But we have to advocate for ourselves and figure out what works for our lifestyles.

Stacey Simms 7:04
Alright, so you were diagnosed with type one as an adult, you were already an incredible athlete. And I think I heard you say somewhere that you ran a half marathon a week or two after your diagnosis.

Robin Arzon 7:14
Yes. So I had a half marathon, I think a week later. And then I had a 50 mile ultra marathon few weeks after that. So it was a blurry and really daunting time. And I had to figure out quickly, this new life, this new thing, I believe superheroes are real. And I know that folks living with diabetes, diabetes warriors are superheroes. And in my superhero toolkit, It now includes insulin, it includes glucose taps. It includes the you know, the Gvoke Hypopen and it's I developed a mantra actually, during that time that forward is a pace. There are some days when the next step is the only step that you can focus on and that's okay. But I figured it out because it was meaningful to me the first question I asked, when my endocrinologist said, you're going to be living with insulin, your pancreas doesn't produce enough or any, I thought, Oh, okay. And I said out loud, how am I going to cross the ultra marathon finish line I have in a few weeks. And we figured it out. And I made mistakes, and I figured it out. And I educated myself. And I want folks to feel that same empowerment of like, gosh, we're gonna figure it out. We're going to be ready. We're going to be warriors, and we're going to continue to be epic.

Stacey Simms 8:24
One of the biggest questions I got when I told my Facebook group for the podcast that we were talking was, again, knowing everybody is different. But you know, just what do you do to avoid lows? Because exercise? I mean, let's face it, some people with diabetes do not exercise because they are afraid of low blood sugar. How did you get past that? How do you avoid crazy highs, crazy lows, when

Robin Arzon 8:44
you're exercising, it is a lot of trial and error. And just like anything else, it's observing, just like observing how your body reacts to a certain food, you have to observe how your body reacts to a certain type of movement. For example, lifting weights, for me might make my blood sugar go up. Whereas of course, cardiovascular or aerobic things like the bike with running will make it go down. So I really encourage folks to get curious, start small, right? Well, you don't have to go out and run an ultra marathon. But maybe you know, you start with the 10 minute walk around the block and see what happens. And then you bring you know the glucose tabs or the apple juice with you, I always have some type of rescue carbs, right. And this is really where the Gvoke Hypopen can come in as well. Because you know, you've got that in a severe and you know, in the situation where we're really putting ourselves in a low blood sugar, severe low blood sugar circumstance, we have medicine that is on the spot that is going to react on the spot that gives me a lot of peace of mind. So it's that two pronged approach of daily diabetes management. And then you know, having this in a circumstance where things get a little bit more severe, or a lot more severe.

Stacey Simms 9:48
Yeah, we have quite a few people who said I take her class I see her all the time. Have you ever had a low blood sugar during instruction like when you're doing a class?

Robin Arzon 9:57
Thankfully, yes, I've gone low but It's all been manageable, drink some juice, keep it moving. I've never had to stop a workout, thank goodness. And that's literally 1000s of hours of practice of knowing my body and knowing the exact timing of like, okay, I'm going to drink a quarter of my smoothie. Eight minutes before this class, I really have had to treat myself kind of like an experiment, like, get curious and just see and trust that even on the days that aren't my best, I'm trying my best and my best is good enough. That is also encouraging. So So I encourage folks to give themselves that same grace, but also that same dose of bravery. You mentioned that there are folks of your listeners who are so scared that they're not moving, but they're not working out. And that really saddens me, because they're limiting their own potential. And why you're letting diabetes when when you do that.

Stacey Simms 10:46
I don't know if you're familiar with Don Muchow, who ran or walked from Disney Land to Disney World that she I did I

Robin Arzon 10:53
read about this. He was told

Stacey Simms 10:55
when he was diagnosed a long time ago, right. I think it was the late 70s. He was told do not exercise because it was too dangerous. That was a real thing that people were told not all that long ago. And he had to wake up one day and say no, no, you know, so I give you so I mean, sounds silly to say, but I give you so much credit for getting your diagnosis and saying no, no, I'm, I'm getting right back into it. And I've had the privilege of talking to a lot of people in the public eye like yourself who have treated lows while they're on camera. musicians who sneak a sip of orange juice or racecar drivers to kind of have it in their car. Can I ask you do you keep something sneaky? Is your water bottle is the other two maybe that people should look for?

Robin Arzon 11:32
One is water and one is juice. I always have some form of juice on me onset always, always, always. And yeah, no shame in that. If I need it. Take a sip, keep it and keep it moving. Thankfully, you know,

Stacey Simms 11:44
yeah, I think it's lovely to find out those little things because it makes our kids and a lot of adults feel better to know they're not alone. I mean, that's half of this. Did you find a community when you were diagnosed with type one because it can be very isolating?

Robin Arzon 11:57
You know, I was, as I mentioned, I was running ultra marathons at the time and there is an amazing ultra marathoner, Steven Anglin, very accomplished he does hundreds and hundreds of miles at a time really epic guy. He was the first person I went to outside of my medical team. And I was like, What the heck, what do I do and you know, he kind of talked me down. And you know, I hope to be able to pay that forward, especially as being part of this be ready campaign, I want to be a visible example of the fact that we can continue moving, we can continue being heroic in big and small ways in our very own lives. Um, you know, as a new mom, I read fairy tales to my baby girl every night and I want to live a fairy tale that is is is even stronger than things that she's going to read in books, and then pass the baton to hertz to one day live just as gravely, but it does require us to be prepared. And that is literally why I wanted to partner with the Gvoke Hypopen team. Because the reality is, the more prepared we are, the more peace of mind we're going to have. You can't control everything. And with any prescription medication, you have to speak to your medical provider to make sure that this is the appropriate avenue for you. But it does provide me peace of mind in the event that a severe blood sugar is looming.

Stacey Simms 13:05
You're coming to 8 years with type one, have you experienced burnout at all yet? You know, it's I think,

Robin Arzon 13:12
yes, I mean, there are certainly days where just like really more of this tightrope walk. So it's definitely exhausting. And we make to think like a pancreas requires a lot of mental energy. But I'll tell you something, I've discovered more than burnout, that every single day we have the choice to turn why me and to try me. And the self pity is poison. I think that self pity is poisonous and much more harmful than burnout. For me, I choose to constantly flip the script, constantly turn pain into power, I have no other way. And it's both being someone that lives with type diabetes, and also being an athlete, and also being a mom, and also being an executive and also being an author and also being an entrepreneur. And it's like, let's go.

Stacey Simms 13:56
I know we're gonna run a time. Two more questions, if I could, you mentioned your daughter things beep with diabetes. How was she doing with that? I mean, she's so tiny. But does she know what?

Robin Arzon 14:05
Oh, my goodness, you know, I mean, we're just learning and she's very curious about the gadgets and the beach and the stuff and I will explain to her, you know, in age appropriate ways of like, this is mommy's medicine, and this is what Bobby needs to do. And now I explained to her what a pancreas is, and you know, things that I definitely didn't learn at her age. But you know, I want her to know, I want her to be informed too. And I want her in order for her to be proud of me. She needs to be informed as to what I go through. And I want her to see me dealing with challenges and rising above it. The Diabetes community is incredibly supportive, and whether you know, the Gvoke Hypopen can be used for folks, age 2 and up. So that's a wide swath of our community and is a great place for more information. That's where the total story is, including any side effects information and safety language.

Stacey Simms 14:51
And then the last question is just what are you looking forward to in 2022? You've already accomplished so much you listed all those things that keep you so busy.

Robin Arzon 14:58
I'm very excited. about the launch of my children's book, it's my first children's book strong mama. It is a love letter to my baby girl. And it really puts the focus on a caregivers self care. So let's remember that we have to prioritize our self care. It's not selfish, whether your parents or not take the time for yourself. Because yes, that burnout is real. And we have to go inward sometimes in order to give

Stacey Simms 15:21
outwardly but like hope when it comes out, you'll come back on and share.

Robin Arzon 15:24
Oh, that would be great. That would be great. Nice. Nice to see you today, Stacy.

Stacey Simms 15:28
Oh, my gosh, thank you so much, Robin, I appreciate your time. Have a great one.

You're listening to Diabetes Connections with Stacey Simms.
More information about Robin a full transcript and the links to Gvoke and to the video are all at the homepage at diabetes I am going to follow up with her hopefully, she'll come back on in a couple of weeks to talk about her children's book and answer more of your questions.
I mentioned at the beginning of the show that Benny asked me to try something new. So let me just set kind of set the table about what's been going on here, especially if you're new to the show. So Benny was diagnosed in 2006. Right before he turned two, he is 17. Now, and so he's had diabetes for really just over 15 years. For the last two years, I've really tried to slide into doing less and less and less to the point where in October of 2020, I turned off all of my Dexcom alarms except for urgent, low. And after a big trip he took the summer he went to Israel for a month with a non diabetes camp after he did well with that. I said to him, Well, what do I do now? Right? What do you want from me? How can I help you? Am I here just for customer service? Right? When you want me you contact me, not the other way around? And he said that that's what he really wanted to do. Have I been 100% successful at that, of course not doing nag him here and there to bolus or if I see something wonky? Of course, is he doing? Well? Yeah, he's doing really well, except I'll be honest with you. He's not as diligent. He's not as on top of it. And he wouldn't mind me saying this, as he was when I was diligent and on top of you know, and as you're listening, if you're laughing, if you're an adult with type one, or if you're a parent of an older child, or young adult with type one, you have gone through this, I've gotten a lot of reassurances from my friends, the diabetes community that as long as he's not doing anything dangerous, and he certainly is far from that he's doing great that the way I would do it is not gonna happen anymore. It's up to him now, which is really, really, really hard.
So here's what the challenge came in. About a month ago, I pointed out to him that, you know, he was missing some boluses. And he wasn't paying attention to things as well, you know, we had like a, it was a moment where I said, can I talk to you about this? And he agreed, and we had a really good conversation like we do every once in a while. And he said, You know what, Mom, I'd like you to try to remember every time you eat to do something, and I said, Yeah, but after 15 years, like how can you not know how can you not do this? Right? I mean, every parent has said that or thought that right? So he said to me, okay, every time you eat anything, I want you to text me. I said, Sure. No problem. I always have my phone with me. That's gonna be easy. And you know, he rolled his eyes. And he said, we'll say,
so the first day, I text him every time I eat three meals, you know, a billion snacks, whatever I'm eating, I text him every time. The next day. I text him. I'm not even really thinking. I text him at dinner. He was at work. He texts back “Is this the first time you've eaten today?” with assorted emojis. And I went, Oh, my God. I did not text him for breakfast. I did not text him for lunch. I hadn't even thought about it. I completely forgot about our bet. And I said, Okay, not fair. That was just day two. It wasn't that I forgot to quote bolus while I was eating. I just forgot that we had agreed to do that.
He said, Okay, I'll give you another couple of days. Well, the next day, I remembered breakfast, I forgot lunch. So he wanted me to keep it up for two weeks, which was our original agreement, I felt that he had proved his point after a day and a half, really. But I kept it going. And I did better. But I really failed at it.
Was that a lesson with universal implications? Probably not. I bet you'd be a lot better at it than I was. I don't know why I couldn't remember. I don't know what I was thinking. But between the two of us, it was a fantastic lesson. And it was such a great way for me to see how even after all this time, you know how difficult this is how tough it is to be perfect. And you know, as you listen, maybe your lesson is, well, that means that you need to set more reminders. And be on him more. I mean, everybody, I guess would take this a different way. The lesson to me was: have a little bit more empathy, and have a lot more respect for the way he is doing it. Well, I mean, we're not talking about a kid who's ignoring his diabetes, and you don't like I don't talk about numbers, but we're talking about an A1C that's, you know, maybe a couple of tenths, maybe a half a point higher than it was last time. And we're already seeing numbers that I never thought we'd see when he was in the teenage years. If you'd asked me, you know, years ago, thank you control IQ. Thank you for a kid who is responsible.
So that's a long way of telling this story that I really got a lot out of so as you listen, if you're a parent, talk to your kid, maybe this is something you can do if you're an adult nodding your head saying yes, Stacy, we could have told you that's what would happen. You know, thank you for your patience. But I got a year and a half before Benny goes off to college. That's it. He is beginning his second semester of junior year. And I think most of these lessons, frankly, are for me. So boy, I hope I'm learning.
All right, we do you have a newscast this week, that is Wednesday, live at 430, on Facebook, and YouTube, and then live on Instagram at 4:45 different times, until these services decide to play nicely together. And I can do them all at once. But right now, Instagram will not let you that's why there are different times for that, but we turn it into an audio podcast that you can listen to on Fridays. And then going forward, we're back to our regular schedule with the long format interview shows every Tuesday.
I am hoping that we're gonna have a lot of technology to talk about this year. We do have some great episodes coming up with the folks at Tandem. We've got an update from Dexcom, as well as some interviews with newly approved products and products overseas that are going to be submitted for approval in the US this year. So a lot to work on a lot to come. I'm really excited about 2022 Not just for the show, but for what I really hope the community starts seeing when this logjam of COVID approvals or COVID, delays at the FDA starts loosening up and walking through so fingers crossed for that.
Thank you as always to my editor John Bukenas at audio editing solutions. Thanks so much for listening. I'm Stacey Simms. I'll see you back here in a couple of days until then be kind to yourself.

Benny 21:29
Diabetes Connections is a production of Stacey Simms media. All rights reserved. All wrongs avenged

Sep 7, 2021

A high school swimmer with diabetes is told he can’t compete at the state championships because of his CGM’s medical tape. It's a story that's been all over social media and national news outlets. What really happened here? We talk to Ethan Orr and his mother, Amanda Terrell-Orr.

They explain  what happened that day, what they’d like to see change and what we can all do to protect our rights when it comes to diabetes.

Also this week! Send us your "Dear Dr. Banting" audio! Details here 

This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.


Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!

Get the App and listen to Diabetes Connections wherever you go!

Click here for iPhone      Click here for Android

Episode transcription below:

Stacey Simms  0:00

Diabetes Connections is brought to you by Dario Health. Manage your blood glucose levels increase your possibilities by Gvoke Hypopen the first premixed auto injector for very low blood sugar and by Dexcom help make knowledge your superpower with the Dexcom G6 continuous glucose monitoring system.

This is Diabetes Connections with Stacey Simms.

This week, you've likely seen the story of a high school swimmer with diabetes told he can't compete at the state championships because of the CGM, his medical team what really happened here, we talked to Ethan Orr and his mother.


Amanda Terrell-Orr  0:41

The whole point of the rule is to prevent a swimmer from having a competitive advantage. You would not have to be someone who understood type 1 diabetes to look at what even had on his arm and know that of course that would not cause the competitive advantage. Of course, it was just medical tape covering up a medical device.


Stacey Simms  1:00

Amanda Terrell Orr and 16 year old Ethan join me to explain in their own words, what happened that day, what they'd like to see change and what we can all do to protect our rights when it comes to diabetes.

This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

Welcome to another week of the show. Always so glad to have you here. We aim to educate and inspire about diabetes with a focus on people who use insulin. I'm your host, Stacey Simms, my son, Benny was diagnosed with type one right before he turned two. That was almost 15 years ago. My husband lives with type two diabetes. I don't have diabetes, I have a background in broadcasting. And that is how you get the podcast.

Before we jump in. I need your help. I am trying something for November. I want to hear your dear Dr. Banting stories and letters. I posted this on social media. If you're in the Facebook group Diabetes Connections of the group or you get my emails, you will be seeing this this week and for the next couple of weeks. Because all the month of September. I'm asking you to record some audio. It's very simple. Just do it on your phone. As part of the dear Dr. Banting exhibit. We talked to the folks at Banting house the museum where Dr. Frederick Banting had his eureka moment where he came up with the idea that led to the discovery of insulin with other people. But Banting house has an exhibit called dear Dr. Banting. And I go much more in depth on this. It's a Diabetes It's on my social media. I'm asking you, what would you say if you could thank Dr. Banting for yourself for your child? Right, just thank him. So all the specifics are in the show notes. Basically just try to keep it to a minute. I'd like to play these back during the month of November. I'm really looking forward to what you have to say. Don't worry about making it perfect. Just try not to have too much background noise use your phone's voice memo app doesn't have to be anything fancy and send it to me Stacy at Diabetes I cannot wait to hear what you have to say.

Alright if you haven't heard and boy this was all over social media last week and this week. Here's a quick synopsis of what has been reported. Amanda and Ethan will go much more in depth and and frankly set a few things straight that were reported a little bit inaccurately even has type 1 diabetes. He was diagnosed at age 10. He wears a Dexcom G6  he uses simpatch the brand of the tape is not important, but you should know that he wears the medical tape over the Dexcom as many people do, and that's pretty much what does that issue here. He also wears a Tandem t slim x two pump that he removes most of the time when he swims.

Ethan swam all season for his high school in Colorado Springs. No issue he had the CGM on for every meet. But at the state championship, as you'll hear, it became an issue. And I'll let me tell that story. But you should know going in is that this is not a lawsuit. The family is not suing for damages or anything like that they filed a complaint with the United States Department of Justice, Civil Rights Division. This is not about money. And you may have also heard that the CHS at the Colorado high school activities Association, which is receiving the complaint here. They say that Ethan did not have a signed medical authorization to have something like this. Well, he has a signed 504 plan. So does that overrule? Or could that be looked at is in place of what they're talking about in terms of medical authorization to wear tape in the pool because it applies to his diabetes and his diabetes medical management plan, USA swim, that governing body does allow medical tape. So there's a lot going on here and I think it's more in depth. And then you've seen in certainly a lot of these media reports, as well done as they are, you know, these people don't speak diabetes, they don't cover diabetes on a regular basis. So it's really excited that Amanda and Ethan agreed to come on and share their story where we could really kind of drill down and figure out what happened here and more importantly to me learn what we can all do to prepare our kids for sports and to kind of learn what we can all do to stand up for ourselves when it comes to diabetes. Right.

Okay, so quick housekeeping note, I'm nosy I like to talk to people so we set the table for a while here I talk about his diagnosis story how he adjusted to swimming you know all that kind of stuff. So if you're just here for the lawsuit stuff, we don't talk about the actual swim meet until about 12 minutes into the interview. So you could go ahead and skip ahead I'm not offended but just know that there's some getting to know you stuff that happens before we talk about the nitty gritty

Alright, Diabetes Connections is brought to you by Gvoke Hypopen and when you have diabetes and use insulin, low blood sugar can happen when you don't expect it. That's what most of us carry fast acting sugar and in the case of very low blood sugar, why do we carry emergency glucagon there's a new option called Gvoke Hypopen the first auto injector to treat very low blood sugar Gvoke Hypopen is pre mixed and ready to go with no visible needle in usability studies. 99% of people were able to give Gvoke correctly find out more go to Diabetes and click on the Gvoke Logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma visit Gvoke glucagon comm slash risk.

Amanda and Ethan, thank you so much. We did this on short notice I really appreciate you coming on and sharing your story.


Amanda Terrell-Orr  6:27

You're welcome. Thank you for having us. Thank you.


Stacey Simms  6:31

And Ethan, you got up pretty early to do this. I am East Coast, your West Coast. So I appreciate that very much.


Ethan Orrr  6:35

It's all good.


Stacey Simms  6:39

Let's back up a little bit before we jump into what happened here and the lawsuit and everything. Amanda, let me start with you. Tell me your diagnosis story.


Amanda Terrell-Orr  6:48

Sure. So Ethan was 10 when he was diagnosed, and our diagnosis story, I think is fairly typical of other people we had noticed, Ethan's teachers had noticed that we had noticed that he was going to the bathroom way more than usual. So I took him to his pediatrician and expressed some concern about that didn't really know what might be happening. They did a test of his urine. And it didn't show any kinds of problems with sugar or ketones or anything like that. So we just sort of stopped at that point. And then you know, weeks go by, and this is still happening. We went on a small vacation and even drank all the bottled water that we had, and was still going to the bathroom all the time. And then the day before Easter that year even had been kind of wrestling with a friend. And he started to be short of breath. And he also felt like really like something was wrong. So the morning of Easter, we wake up and I look in his mouth, and I see white spots in his mouth. And I say to him, it's time we need to go to urgent care. So in the back of my mind this whole time has been some education that I saw on a friend's Facebook post about type 1 diabetes, her son has type one. And she always posts educational information. And so in the back of my mind, I was thinking, I wonder if the test whatever they did at the pediatrician was wrong. So we go to urgent care, they test them for strep throat, of course. And then I mentioned to the doctor that I'm concerned because of these other symptoms. The doctor, of course, has someone test his blood sugar. And luckily for him, it wasn't extremely high. He wasn't NDK. But urgent care at that time, send us directly to the hospital. So Ethan really stayed a day in the hospital. And the next morning, we were able to connect with the Barbara Davis center part of Children's Hospital in Colorado. It's an excellent place for treatment of kids with type one. So we were able to go there and immediately start connecting with resources and other families and of course, like, like everyone after diagnosis, drinking from the firehose to try to figure out how are we going to live in this new life?


Stacey Simms  9:10

Even What do you remember that time?


Ethan Orrr  9:12

I remember during the day before with all the symptoms that I would wake up in the middle of the night like to use the restroom. I didn't know what diabetes was immediately in the car. So mom was tearing up a little bit on our way to the hospital. And she when I asked asked, like, what is diabetes? She's like, well, you're gonna be getting quite a few shots today. Because like home, right? No, I like I thought she was kidding. At first cuz I've never heard of some like that. The beginning is I was just in shock a little bit. But then like, I slowly edged in or wet or things will be good. Nothing's gonna change too much.


Stacey Simms  9:53

I don't want to fast forward too much as we're getting to, you know, the news story here, but you're 16 now, so Were those six years. Obviously you play sports, did things kind of go to a better place? Do you feel like you guys managed it pretty well?


Ethan Orrr  10:08

Right? When I got diabetes, I was still competing, swimming wise, and I was trying to swim for the Colorado torpedoes in Manitou. At the time I, I had my CGM, but it didn't work in the water was a different type of CGM. So my phone couldn't connect in I was in a spot where I was close to my honeymoon period. And so we had a we are way too many troubles, trying to like dangerous troubles trying to be able to swim that year. So I ended up just pulling out, you know, we made a family decision is too dangerous, because I could feel my blood, like when I went low or high or anything like that isn't that low? This year, at the beginning of the season, we are a little bit of a problem. Not a little, there's a big problem at the beginning of the season, because my body wasn't ready and adjusted for stuff like that. So I had a lot of very, very bad lows during some practice for like about a month. And then it finally picked up and I was completely fine after that. And I was able to swim very well with the rest of it without blood sugar issues.


Stacey Simms  11:16

Amanda, let me switch over to you. Tell me about that experience. Because I know with my son, every seat Well, first of all, he changes sports every couple of years, which is bananas, because we figure it out. And then he moves on. So what was swimming? Like? Yeah, you hear you,


Amanda Terrell-Orr  11:29

I hear you. Yes, we have that experience as well. It sounds like our kids are similar that way Ethan likes to jump around sports. So he had been even been competitive swimming for not an insignificant amount of time, I would say when he was diagnosed, and it was just in that honeymoon period and learning everything. And being just terrified of every significant low. You know, at the beginning, those things seem really insurmountable. Because even had a couple of really scary lows, it was also kind of affecting his confidence to stay in swimming. So sadly, something that he really loves. What we said is we put it on pause. We didn't think it would be on pause this long. But it was really Ethan's choice. And so we were really happy this season, when he chose swimming again. And then he started swimming, and everything that we thought we knew about management of his diabetes changed in some ways. And in Ethan's case, he was he's very active, he's very fit. But his body was not used to the kinds of energy that need to be expended to swim in particular. So we tried all the things, all the tricks, all the tips that everybody gave us. And he was still having really significant lows, having to be assisted out of the pool sometimes. But to his credit, and one of the things I'm so proud of him for is that he swam right through that he had to sit out of practice a lot because of low blood sugars. But he still kept going every day. And he believed us when we said your team is going to help you and by team I meant his endocrinology team, and also athletes with type 1 diabetes. So we threw out questions out there into the social media world and got great advice from other people, athletes with type one. And we combine that with the guidance from our endocrinologist and Ethan's body also adjusted to the swimming. And so at the end of all of that he was at the end of the season, he was really doing pretty well in terms of being able to swim safely. So we were very proud of how he came through this season. You know, to be honest, as a person without type 1 diabetes, and an adult. I don't think I would have done that. It was very, very hard, but he stuck it through and was fortunate enough to be able to go to the state championships.


Stacey Simms  14:01

He said I'm curious what worked. Looking back on all of that.


Right back to Ethan answering my question, but first Diabetes Connections is brought to you by Dario Health and bottom line you need a plan of action with diabetes. We've been very lucky Benny's endo has helped us with that and he understands the plan has to change. As Benny gets older, you want that kind of support. So take your diabetes management to the next level with Dario health. Their published Studies demonstrate high impact results for active users like improved in range percentage within three months. reduction of A1C was in three months and a 58% decrease in occurrences of severe hypoglycemic events. Try Dario’s diabetes success plan and make a difference in your diabetes management could have my forward slash diabetes dash connections for more proven results and for information about the plan.

Now back to Ethan explaining how they got his blood sugar more stable during and after swimming.


Ethan Orrr  15:03

So to be honest, the only reason it worked, I in my body got adjusted. At the beginning of it, I would have to take seven juices, maybe practice a, like during the entire thing, not not like a one point. But like throughout of like a one hour practice is really bad. But something that we did is I had gummies like little energy energy jam. Yeah, it's like the glucose gels. Yeah, we had glucose gels next to it. Because if you have too many fluids, with swimming, you can get nauseous, especially with it being juicing and eating granola bars before you, when something very hard tends not to work out very well to something that's like flexible with your stomach. So it's not like you're eating like a valley granola bar, and then you're going into pool and wanting to puke.


Amanda Terrell-Orr  16:03

Yeah, even some of the things that you're maybe not remembering because they just became so routine for us is suspending his pump. like two hours before practice making sure he didn't have any insulin on board keyword also, toward the end there where we were waiting for his body to adjust, he would have the equivalent of a meal, about an hour before practice with no insulin to cover it. And he would still getting into the water, those first bit of time would still go very low in a short period of time. So then he would have to sit out like he was saying, you know, have a lot of juice. And then he would be nauseous and not able to swim as well. What the doctor kept telling us is, you know, hang in there, we're going to figure this out, your body's going to adjust. And sure enough that ended up happening. But those are the kinds of things that we had to try in the early part of the season.


Stacey Simms  16:57

Sounds very familiar. My son's first wrestling practice freshman year of high school, he ate 85 uncovered carbs and still would not go above 70. Yeah, I was able.


Amanda Terrell-Orr  17:09

Yeah, the other thing that was really challenging that we had never experienced before, but we know that other people have since we reached out is overnight. Well, after practice, Ethan would have lows that would last for hours, no matter how many carbs we would give him. So then we would have to get to the point where we were micro dosing glucagon with the advice of his doctor in his circumstance to try to bring his blood sugar back up. But there were nights where my husband and I were up for four hours at a time just trying to get his blood sugar into a safe range. And this year, is the first time in all of those years, he's had diabetes, that we had to ask for emergency medical assistance for a very severe low. So it was a really, really difficult time. But what we like to think about that, and you know, he's very resilient, he got through that time. And you know, the type one community was really helpful in helping us come up with ways that we could try to address these big problems that we're facing.


Stacey Simms  18:14

So you brought up the state championships. Let's just jump into that now and talk about what happened and the basis of the lawsuit. And you know, what you hope to accomplish here, but start by telling me and Amanda, let me ask you what happened at the state championships.


Amanda Terrell-Orr  18:29

So the summary version of that, that I would say is that even had several events that day, they were all relay events, which means that he was competing as part of a small team of other swimmers. He had swam to those events. And the last event of the day would have been his final relay event swim. He was standing at the side of the pool with another student next to a referee, and the referee asked Ethan about what was on his arm. And so Ethan explained, of course, that it was a continuous glucose monitor that it measured his blood sugar that it was for type 1 diabetes, and that he had the patch over it to keep it on during swimming, which every athlete knows that everybody's body's different, but you are more likely to need extra cover over your CGM when you're sweating or swimming or that kind of thing. So the referee asked Ethan, who his coach was and who he swam for, and minutes before the event was scheduled to begin the referee address the coach. The coach told the referee all the same information that Ethan told him And in addition, said Ethan has an active 504 plan that allows him to have his medical equipment. The referee insisted that Ethan was in violation of what is commonly called the tape rule, which is essentially the fact that a swimmer can't wear something extra on their body to aid their speed boy The four body compression because those things could give the swimmer a competitive advantage. The coach tries to explain again everything that was going on. And that not one time in the 70s even swam prior to the state championship. Did any other referee believe that that rule applies even. It's always obvious in some of the videos that various news stations have used. You can see it on Ethan's are messy swimming. So clearly referees who are paying close attention to the swimmer to see whether their stroke is off or they're, you know, doing anything else that would be a violation saw this on his arm and no one said anything. So the referee was told that information as well. The referee insisted that in order to compete under that tape rule, he would have needed a doctor's note to say that it was medically necessary. The whole point of the rule is to prevent a swimmer from having a competitive advantage, you would not have to be someone who understood type 1 diabetes to look at what even had on his arm. And know that of course, it would not cause a competitive advantage. Of course, it was just medical tape covering up a medical device, the Dexcom G6  says on it what it is. And I timed it, it takes about 15 seconds on Google to figure out what that is. So if the referee did not believe the information he was getting, and the whole purpose of the doctor's note is to say, you know if needed, and so it doesn't give a competitive advantage. All of that together means that the referee heard all that information. And he either didn't believe it. Or he continued to believe that either was potentially cheating by wearing a foreign device or substance to aid his speed buoyancy or body compression. So at that time, the referee said that Ethan was not going to be allowed to swim. One of the important things that has happened in the news that I know the governing body is having trouble with is the use of the term disqualification. In my mind when the kid doesn't get to swim, the semantics of that don't matter. But it wasn't the fact that even swam in the meets in that final event and was disqualified, he was not allowed to swim the final or that. And so what the coach tells us happens from that point is that the referee says Ethan will not be able to swim, you were required to have this note, he's in violation of the tape roll. And so the referees scramble, because again, he's addressed minutes before the event starts and substitute another swimmer for Ethan. But what the coach told us is that in the rules, when you're going to substitute a swimmer, you have to go to, you know, like the administrative table and make that substitution in a particular kind of way. And so he was not able to do that in that time period. And the coach indicated to us that the relay team was subsequently disqualified for not having a proper substitution. Now, we learned for the first time when chafta issued their statement, that they are saying that the team was disqualified for an early start. And, you know, from our perspective, although it's really upsetting to us that the whole team would have been potentially disqualified on this substitution issue. The fact is, the crux of this is that Ethan was not allowed to swim, because someone incorrectly interpreted what he had on his body is potentially cheating and violation of the taping raw. That is essentially what happened in Ethan's case. And that just started all of the research and that kind of thing that our family did before we decided to engage a lawyer got it.


Stacey Simms  23:50

My question, I had a lot of questions. But one of my questions is, is it your belief, and I assume it is, since you're going to have with the lawsuit, that having a 504 plan, being covered by the American with Disabilities Act supersedes that tape rule.


Amanda Terrell-Orr  24:05

There are several points to what we're saying. So the first thing we're saying is the rule doesn't apply to even circumstance. And although the high school associations have not chosen to be this clear, the USA Swimming rules are very clear that taping for medical devices is not a violation of this taping rule is really about kt tape or therapeutic tape that would be used to support somebody muscles or joints or ligaments or tendons in a way that would give them a competitive advantage. Anybody who knows anything about swimming knows that when something protrudes from your body like a CGM, that it actually causes the disadvantage because we're talking about milliseconds of time and surface drag can actually make him slower. Additionally, we know the rule didn't apply because no other referee instead Prior meet even mentioned it as being possibly implicated by that rule. So let's say he even mistakenly believes that the rule applies, there are a couple things about that he did have a 504. We do think that's important, because the 504 says that he's able to have his medical devices at all times, in all school activities. Secondly, and I believe this is standard across the country, but even had to have a sports physical before he participated in sports that said that he was safe to participate in those sports. So there are lots of reasons that we believe the rule didn't apply. Even if it did, Ethan should have been fine without a specific doctor's note to prove he had type 1 diabetes. And further, the referee under the rules had the discretion to allow even to swim if he did not find that to be excessive. And he says, and he chose not to let even swim. So for all of those reasons, I think the way I described it to someone is there was a tortured reading of that rule to exclude a kid was type 1 diabetes isn't


Stacey Simms  26:13

how is your team reacted to all of this?


Ethan Orrr  26:15

Whoa, I didn't find out until I was literally walking to the blocks. My team was a little bit upset, but because they didn't know what was going on. At first, my friend, I was with one of my teammates. While that was happening, and he's like, going on well, the coaches talk or not the coach, the referees talking to me. And so I was walking to start the event, like I was walking around the pool, and they were like, Ethan, why aren't you sorry? I was like, What? What do you mean? And they're like, you're not swimming coach just said, Go talk to coach right now. We're starting to bet right now. Aren't we? Just like, yeah, go talk to coach right now. And we're gonna talk to him. And he was like, yeah, we're looking. I'm looking at the rulebook right now. And we're all looking at the rulebook really quick, but you're not able to swim. Because the CGM on time. And so everyone was like, why? because they didn't know it was forward. And the teammates that I was with is like, was it that coach, or, or the rapper or whatever? I was like, yeah, know what? He was like, yeah. I don't know what to tell you. I was like, Oh, okay. We were all upset about it. I was really dumb. Did


Stacey Simms  27:26

they support you? I mean, in these days in the time that has passed, tell me about that.


Ethan Orrr  27:32

Oh, yeah, no, they've always, I'm friends with everyone on the swim team.


Amanda Terrell-Orr  27:35

They're all super great. My coaches super great. The trainer for the cornado, the school that I stand for, is really great. My teammates are really supportive whenever I would have to get out, you know, they just, they'd make jokes, they'd be funny about it, like try and like lighten it up and whatever. They're really great. They're a really great team, they are really great team, I'm still going to swim for them this year, I'm still competing for I'm going to try and compete for state this year to this. I think the other thing, even in terms of the support even got, we we really can't say enough about this coach and the athletic trainer, it was a difficult season for them to of course, because of everything Ethan went through. So this happened, the state championship happened at the end of June, at the very beginning of July, the coach actually sent an email to chafa and laid out the situation of what occurred, asked if they would work with him, because he believed that what happened could potentially be a violation of even federal right. And I spoke with the coach kind of throughout that time. But at the end of July, I spoke with him more in depth and and I really wanted to know what kind of response he had received, he had received zero response to that email. So here we have a coach that's trying to act, you know, advocate for his student with diabetes and try to get something change. So this wouldn't happen again. And he received no response to that,


Stacey Simms  29:04

you know, Amanda, a lot of people are going to be really excited that you've done this and want to see this change and are rooting for you. But a lot of people are also going to be wondering why a lawsuit. There's just so much that happens to you all. When you file a lawsuit, you're going to get a lot of negative attention, you're going to get pushback, we file the lawsuit and what are you seeking in the lawsuit?


Amanda Terrell-Orr  29:26

So I'm glad that you raised that. That's one of the points that is confusing to people. We actually have not filed a lawsuit we filed a complaint with the Department of Justice alleging a civil rights violation. So that process is a different kind of process. That's not about monetary gain for anyone. That process is about the Department of Justice investigating whether or not there was a violation of even civil rights and if so, what kind of oversight is necessary over the governing body so that athletes with this abilities don't experience those kind of violation. So it's essentially a mechanism to enforce oversight and change, but not a mechanism whereby we would receive any funds whatsoever. Our lawyer is doing this pro bono. If we were to file a lawsuit, that would be a different circumstance. But it isn't our goal. To get money out of this situation, our goal has several parts to it, the main part of it is both the national and the state rules need to get with the times and make the kind of changes that USA Swimming has made. That makes it clear that taping of a medical device is not cheating. That is the primary thing that we need to see. I also truly believe that chafa in their rulemaking process needs to include the voice of athletes with disabilities, or people who have a lot of familiarity with those areas, I think that would help give voice to some of these areas where they clearly have not educated themselves. And I just think that voice is so important. So those are a couple of the main things that we're trying to get accomplished here. And, you know, in general, the governing body had the opportunity to say, we really care about this, we want to work with these folks to try to make change. We had one referee interpreted this way. This isn't what we believe as a system. But their statement, you can see, it's clear that they believe that discriminatory reading of that rule is the right reading of the rule. So we need some help from Department of Justice or other avenues to force the issue to get them to change. What kind of tape do you use? Do


Stacey Simms  31:45

you mind? I mean, you can share a brand name or just you know, because there's so many different overlays for the Dexcom. I'm curious what it looks like


Amanda Terrell-Orr  31:50

he was wearing the simpatch. Got it. And one of the things that I've been saying to people, if they're not swimmers, or athletes, they don't necessarily understand the difference between my kcca for therapeutic tape and Matt. But as you know, and as other people who use those overlay patches, now, that patch was specifically exclusively and obviously designed for that purpose. It has a perfect cut out just for made for the exact model of CGM that you have. And it's clearly obviously just holding that device on. So anyone who looks at the simpatch, or any other similar kind of patch, can easily understand what it's there to do. And not that and understand that it's not there to aid his speed, buoyancy or body compression, it can't do any of those things. And it's clear that it can't when you look at it,


Stacey Simms  32:45

he said you've said you're gonna start swimming again, you want to make it to the states again, why is this got to be very disruptive to you? This can't be a fun thing to be going through. Tell me why you like swimming.


Ethan Orrr  32:56

It's one of the hardest sports for you to be able to do. I really enjoy the individuality, but also how you work as a team. I mean, no matter what the points that you get for individually swimming, impact the entire team on in deciding if you win or lose the knee or event or competition, whatever, whatever composition, I really loved swimming, I've always loved swimming. But once I got diabetes, there's a we couldn't manage it properly without being safe. But nowadays I can. And I totally love to pursue it. I feel like it's great. It's great for the body. It's great. It's great in general, and just to get your mind off of whatever I mean, I think this is an amazing sport. And I'd love to pursue it. So even if we've had troubles, hopefully, we shouldn't have those same troubles. If the if we get the rule change that we need and want then I shouldn't have the problem, then I can swim and still compete. I don't hate chess or anything like that. I just want some real change. You know, before I let you go,


Stacey Simms  33:57

Amanda, let me ask you what I saw this story on social media. I feel like it's been in every diabetes Facebook group. Obviously it was local television and got picked up by national media. What's the response been like for you?


Amanda Terrell-Orr  34:08

What I want to focus on is the positive first because that is the overwhelming majority of response we've gotten. We've just received so much support. We've received support from jdrf. We've received some for support from Team Novo Nordisk we've received support we were contacted by Dexcom. So all of those are good, but also the heartfelt messages that we've received from other parents of athletes with type one have been moving and have really helped support us through a time where we're getting the kind of attention that we did not expect from this. We expected that we would file something that our lawyer would do a press release and a couple of local channels would be interested. And then we would just wait and see what happens. This has been way more of a response than we expected and the back much Already in that response has been positive and supportive. But as we know, in the public domain, there are always people who don't think about the consequences of what they say on real people. And they come after, you know, a 16 year old in their comments. And so early on, our lawyer told us don't read the comments. And that was really great advice. So now, we basically just engaged with people who have commented on, you know, like a diabetes, Facebook post, or some other kind of social, that's from folks who understand that better. And, you know, we've kind of asked those people who are supporting us, if they're reading the comments, they can address those issues, they can address people who are trolling us. And that would be really helpful to us, because we just can't be beat up that way. But I also think chaffles response was very disappointing to us. And it felt like they were minimizing denying and blaming. And they had the opportunity to look at this much differently in a way that was geared toward change that could allow student participation. And they chose not to do that. It felt like backlash to us that they chose to respond in that way. But by and large, boy, we really appreciate all the support we're getting, it's really the fuel that keeps us going. Because this is hard, it's really hard to be in the spotlight this way, and even made this choice themselves about whether we were going to do this after a lot of research. And so it's wonderful when people support him and say, Thank you, Ethan, for doing this, and lift him up around his struggle. That is just been wonderful.


Stacey Simms  36:44

He's gonna let you have the last word here. When you hear your mom say all this stuff, like what's going through your head? Did you think it would get to this point where it's not nationwide?


Ethan Orrr  36:53

Honestly, no, I was surprised that it got really big, really quick. I was not expecting that at all. So I'm really happy that that people are supporting it.


Stacey Simms  37:06

Well, thank you so much for joining me, keep us posted. love to know how this moves forward and plays out. But thanks for explaining. And, you know, we wish you all the best. Thank you both.


Amanda Terrell-Orr  37:16

Thank you so much for having us.

You're listening to Diabetes Connections with Stacey Simms.


Stacey Simms  37:30

More information at Diabetes I'm gonna link up some of the stories about Ethan that some of you may have already seen most, we're gonna try to link up some follow up as the story progresses, because we're really just at the beginning here, you know, I'm going to follow through this complaint with the Department of Justice, see what the rule changes are like if they come through and see if other clubs and athletic associations follow suit, or do anything that is proactive. If you find something in your local community, let me know if there's a rule change because of this, or I gotta tell you, we've already talked to the coach about Benny's wrestling, and you know how he wears his equipment. I'm double checking, I just want to make sure that we're all good, because while he has been fine so far, and last year, we saw a ref wearing a T slim pump at a couple of the meats. I didn't go over. But Benny did go over after the meets and just say hello, when you just showed us pump and that kind of thing. But even if the ref has type one and wears a pump, you know, there still may be a misunderstanding of the rules. So I I'm definitely double checking all of that, to make sure that we're not gonna have any issues this year. It's complicated.

I gotta tell you that my favorite part of the whole story is how Ethan's teammates have hung with him. Right. And they haven't made him feel different. They haven't made him feel like he's to blame for things. We've been so lucky with Benny that he's surrounded with people who support him as well. And if you heard the episode he was on a couple weeks ago. He says part of that is because he just doesn't want to be with people who don't support them. And we're really, really lucky that he feels that way. So Ethan is lucky as well. But Big thanks to Ethan and Amanda for coming on so quickly and sharing this story and making some time for me.

All right, Diabetes Connections is brought to you by Dexcom. And we have been using the Dexcom system since he was nine years old. We started with Dexcom back in December of 2013. And the system just keeps getting better. The Dexcom G6  is FDA permitted for no finger sticks for calibration and diabetes treatment decisions you can share with up to 10 people from your smart device. The G6  has 10 day sensor wear and the applicator is so easy. I haven't done one insertion since we got it Ben he does them all himself. He's a busy kid and knowing he can just take a quick glance at his blood glucose numbers to make better treatment decisions is reassuring. Of course we still love the alerts and alarms so 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 and click on the Dexcom logo.

If you are listening to this episode as it goes live on September 7, then I wish you a very happy new year. It is the Jewish holiday of Rosh Hashanah. And as you probably know, these podcast episodes are taped and scheduled in advance. So I am not working today I am celebrating the new year with friends and family. And I don't mind sharing that. We always go to our same friend's house. I don't have any family locally here in the Charlotte, North Carolina area. And our friends this year, were probably having like 20 to 30 people, they bought COVID tests for everybody those over the counter COVID test as I'm taping, I haven't taken it yet. When you're listening to this, I will have taken it. But I thought that was really interesting. We're all vaccinated this group we've gotten together before earlier in the summer, it was actually the first group of people that I got together with in Gosh, I want to say maybe late May, you know, we'd all been vaccinated, but he's really excited. Nobody knew Delta was coming. And so we know we're all reacting to this in different ways. I'm really, I guess the word is interested that this is going on. I wonder how many other people are doing this for small private gatherings. I'm excited to be celebrating and may it be a sweet and happy new here because my goodness, we definitely need it. So I'm gonna leave it there.

Big thanks to my editor John Bukenas from audio editing solutions for really jumping in here. We put this together much more quickly than our usual episodes. So thanks so much as always, John, and thank you so much for listening. I'm Stacey Simms. I'll see you back here on Wednesday for in the news. That'll be Wednesday live on Facebook at 430 Eastern Time, and then we turn that into a podcast episode for Friday. Alright, until then, be kind to yourself.


Benny  41:35

Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrong avenged

Aug 10, 2021

Any level of exercise can be more challenging when you live with diabetes. When Eoin Costello was diagnosed with type 1 at age 19, he was worried that his love for fitness and sports would have to be put aside. Instead, he found a way to not only stay active but to coach other people with diabetes to do the same. Whatever level of fitness you're looking for, Eoin is all about having fun and making it work.

He's also the host of The Insuleoin Podcast. Stacey appears on a recent episode talking about her parenting experience.

Also this week, In Tell Me Something Good – type 1 diabetes and space force? Did we just see a big barrier – military service – come down? Link to the article here. 

This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

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

Join the Diabetes Connections Facebook Group!

Sign up for our newsletter here


Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!

Get the App and listen to Diabetes Connections wherever you go!

Click here for iPhone      Click here for Android

Episode Transcription Below: 

Stacey Simms  0:00

Diabetes Connections is brought to you by Dario health manage your blood glucose levels increase your possibilities by Gvoke Hypopen the first premixed auto injector for very low blood sugar and by Dexcom help make knowledge your superpower with the Dexcom G6 continuous glucose monitoring system. This is Diabetes Connections with Stacey Simms. This week exercise with type one can be a challenge. You know there are a lot of variables Eoin Costello was determined to make it work when he was diagnosed and says the key is don't expect perfection.


Eoin Costello  0:41

When I start something new, I'm probably gonna see some highs and I'm probably gonna see some lows. And I think being aware of that, first of all is very important because you're not going to be as frustrated or discouraged when you do inevitably see these highs and lows


Stacey Simms  0:57

Eoin was diagnosed as a young adult. He has his own podcast and we talk about managing different kinds of workouts, treating lows at 3am. And lots more

in Tell me something good type 1 diabetes, and space force. Did we just see a big barrier US military service come down?

This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.


Welcome to another week of the show. Always so glad to have you here. You know, we aim to educate and inspire about diabetes with a focus on people who use insulin. I'm your host, Stacey Simms, my son was diagnosed with type one back in 2006, at the age of almost two, and he is now 16. My husband lives with type two diabetes, I don't have diabetes, I have a background in broadcasting. And that is how you get this podcast.

I am just back from podcast movement, which is a really big podcasting conference. I've gotten to it in years past, but I haven't been in a while it was really fun to catch up just like diabetes conferences, you know, you see all your friends and you do learn stuff. And I was there in a different sort of capacity, not just learning about my own show. But I'm working a little bit with a group called sheep podcasts, which is of course, podcasting for women. And I bring all this up just to say, it was really interesting to see the difference between travel at the beginning of July, which was the first time I really went to any kind of conference or in person gathering that wasn't, you know, immediate family. And in July, we were certainly very cautious. And friends for life, the organization there did a great job at being smart about COVID and doing everything they needed to do. But the difference this time was just the attitude and the feeling because of the Delta variant. You know, it was very interesting. Many more people were masking indoors than in July, many more people were expressing concerns about traveling back and forth. And I don't bring this up to say anything other than it was an interesting observation. You all know as you listen, you know, this is a very educated audience What's going on? I don't have to tell you anything.

If you follow me on social media, you might have seen that I was wearing a mask outdoors in downtown Nashville, I was kind of reluctant to go to downtown Nashville at all, but I'd never been there. And I wanted to see all the bridesmaid stuff myself. Because it is like the National Capital now in the US for bachelorette parties. And yes, it lives up to that hype. It was amazing. But I was wearing my mask outdoors. If you followed me on social you saw that. And I haven't done that before but it was crowded and a lot of young people and you know in the US the younger the less likely to be vaccinated. So we took more precautions than we know I say we then me than I normally would have

also was so much fun to meet some diabetes friends just as an odd coincidence in Nashville last Wednesday. As you listen children with diabetes, the group that puts on friends for life had a very cool event with mankind, the people behind Afrezza inhaled insulin, and they sponsored a fun time at a go kart track with Conor Daly. He is an IndyCar driver who lives with type one. And he was in town because Nashville had their very first Music City Grand Prix. I will link that up. It was a very cool, very different kind of race. But Connor was very cool himself. He was super engaging with the kids. I will link up some coverage. There was a new story come up some of the local news stations came out and made some videos which was really nice. I got to meet Rachel Mayo, who is a very cool lady who lives in Nashville. And you know, we're we've connected on social media for years. She lives with type one. She works with the JDRF chapter there. And Ernie Prado who's been on the show before he works at NASA. I saw him with friends for life. And he told me if I was going to Nashville, I had to look her up. So Rachel, it was so great to meet you. And maybe next time we will get in the go karts. I don't know. It was really fun though.

you know, one of the things I mentioned podcast movement, but one of the things that's really fun about going there is meeting other podcasters you know, we already have fabulous other shows in the diabetes community. There are lots of podcasts and more of them. keep popping up all All the time, I did sort of a swap with this week's guest, but we did it kind of backwards. I taped the interview you're about to hear with Eoin first. And then he interviewed me about a week later. But he has already aired the interview that he did with me. His turnaround time was quicker. So I'll put the link in the show notes to that Eoin Castillo's show is the Insuleoin podcast, it is great. Oh, and you can hear the name in the title there Eoin was diagnosed almost 10 years ago at the age of 19. And he was very active very much to sports at the time. And as you can imagine, very worried about whether he'd be able to continue. It's a bit hard to imagine now. But even 10 years ago, there wasn't the social media there was in the communication we have now in the diabetes community. I mean, it's taken off for sure. But when you think about it, 2011 was still at the very beginning. So there wasn't a lot of information out there for somebody who wants to run marathons or lift weights competitively, you know, that sort of thing. We had a great conversation about how Eoin you know, kind of found his way and he is now helping many, many other people. And he is Yes, he's from Ireland. I think his accent is much nicer than my my New York accent which occasionally comes out I know you hear it here and there.

But first Diabetes Connections is brought to you by Gvoke Hypopen. Our endo always told us that if you use insulin, you need to have emergency glucagon on hand as well. Low blood sugars are one thing we're usually able to treat those with fast acting glucose tabs or juice but a very low blood sugar can be frightening. Which is why I'm so glad there's a different option for emergency glucagon it is Gvoke Hypopen. Gvoke Hypopen is pre mixed and ready to go with no visible needle. You pull off the red cap and push the yellow end on to bare skin and hold it for five seconds. That's it. Find out more go to Diabetes and click on the Gvoke logo. Gvoke shouldn't be used in patients with via chromosoma or insulinoma. Visit Gvoke glucagon comm slash risk.


Eoin Welcome to the show. It's great to talk to you today.


Eoin Costello  6:59

Thank you, Stacey. Thanks for having me on. I'm actually a longtime listener of the podcast. I was a pleasure. So I appreciate it.


Stacey Simms  7:05

Thank you so much. I was just about to say I really enjoy your podcast. It's kind of funny talking to a fellow podcaster. This will be nice.


Eoin Costello  7:14

Absolutely. At least we were both used to speaking on a mic.


Stacey Simms  7:17

Oh, we see now you set it up. Now we have to like up the game. We really have to be good today. I want to talk about your show and what led you there. But let's just start at your story's beginning. You were diagnosed with type one at at 19. What's going on in your life during that time?


Eoin Costello  7:35

Yeah, so I was kind of transitioning from high school, we just call it regular school in Ireland into college. So I had done a year of like a portfolio course I was actually going to art college for animation. It was around Christmas time. And I had noticed some differences in terms of how I was feeling. Obviously, I was very tired. I had lost about a stone and a half in the space of a month. I was really thirsty all the time. I just didn't have any energy. And I suppose because I was 19. And I was kind of into fitness and train and and keep myself healthy. I had this I had this naive attitude of I'm 19 I'm invincible. How could there be anything wrong with me, therefore, I'll just brush it off to the side. And it was around Christmas time and and in Ireland, we like to go to bars, we like to have a good time around that. Obviously, in France, I was having a few drinks. And if I was tired during the day, I would say it's only because I was out last night or if I was thirsty. It's because I've had a few drinks the previous night. And it wasn't until my parents were kind of quietly concerned. What they had mentioned that I should probably go dEoin to the GP get a blood test and just to see if everything's okay. And I reluctantly agreed because I was kind of saying, Look, I'm fine. I'm fine. I'm fine. There's nothing wrong with me. But I I gave in, because I just wanted to keep my parents happy.


Stacey Simms  8:59

Let me just interrupt you real quick. Just to translate over here. A stone is 14 pounds. So you lost 21 pounds.


Eoin Costello  9:06

Yeah, it flew off me. Right? Yeah. And in a very, very short space of time was about a month, a month and a half. But the thing about it was because you kind of see yourself every day, I didn't notice it as much. And it wasn't until I'd seen a friend who I hadn't seen and maybe six months or so I just bumped into her in the street. And she said to me, You look really different. And I said how would you mean and she goes I don't know you just look different. And she she kind of blurted it out and was embarrassed nearly but from saying it, but it was obviously because I had lost so much weight in such a short space of time. So basically I went down to the GP got a blood test. And a couple days later I got a phone call saying this is all I said it is blood test come back. You have type 1 diabetes, you need to go to the hospital right now. And I went in and my bloods were like six 40 640 so very high. And then that led me to my new life.


Stacey Simms  10:05

Was there any confusion about which type it was? Because sometimes, as a young adult, they don't go type one initially,


Eoin Costello  10:11

no, straightaway, they they had told me it was type one. But I had barely even heard the word diabetes before. I obviously knew that it was a condition that people lived with. But I had no idea of the complexities of it, or just the, the detail that you have to now live your life by. But no, there was no confusion. It was type one straightaway.


Stacey Simms  10:31

And while I'm sure your parents were supportive, but very worried, I heard your brothers gave you an interesting well, while you were in the hospital, is that true?


Eoin Costello  10:40

Yeah, it is true. So I was I was in hospital. I think I stayed there for about three nights while I was on an IV and obviously getting the crash course and diabetes management. And my family, in a good way have a dark sense of humor. We're nice people we like to think what around difficult times like that sometimes it can be nice to try and keep things light hearted. So my two brothers got a cough my brother and or my my dad. And we're obviously informed that Eoin has been diagnosed type 1 diabetes is in hospital. And on their way to the hospital. They picked up bottles of CO sweet jellies, these kinds of things to bring in as a joke. It kind of sounds weird. If you don't if you don't know. It came, it came from a good place.


Stacey Simms  11:30

That's funny. Yeah, I think sometimes dark humor has its place for sure if you know it's coming with love. That's really funny. Exactly, of course. So you're already very involved, as you said in fitness. I assume you played sports all growing up. What were you thinking at the time about what was to come next?


Eoin Costello  11:47

Yeah, there was a lot racing through my mind, obviously. But one of the big things that stood out to me and one of my main concerns was, can I continue to play sport, can I continue to be active, and for my whole life, I, I played a lot of different sports. But at the time, I was playing football, or I was playing soccer at a very high level. And I wanted to continue doing that. And because I didn't know anything about diabetes, I had almost automatically assumed that this would prevent me from being as active or playing sport. So it was obviously a big adjustment in terms of how to manage blood sugar around exercises, as we all know. But as time went on, I kind of quickly realized that look, you can of course, still play sport, you can be active, as long as you're still prioritizing your diabetes health. But the first while I was I was very concerned.


Stacey Simms  12:41

It's interesting, when you were diagnosed, you know, almost 10 years ago. Now, this is a time before a lot of social media. I mean, it's kind of just starting. But I guess what I'm asking is, you have a huge Instagram following, and other social media following and you post advice, and you talk very openly about how to do what you do with type 1 diabetes, I've got to assume that wasn't available for you. When you were diagnosed? How did you figure it out? How did you know what to do?


Eoin Costello  13:07

Very, very good question. It reminds me of when I kind of first got back to college. Because when I was in class, obviously, I had just been recently diagnosed. And as you say, Stacy, there was no social media, there wasn't really any, any sort of community based support groups that I could kind of connect with online and learn from other diabetics. And as we know, it can be very isolating to live with diabetes, because it's sometimes are consuming in your life. So at times, I was thinking I only person in the world left with this thing. And obviously I wasn't, but sometimes you can feel like that because it is so just on your mind all the time I was in college, I remember, some days, I was supposed to be doing work, but I might be behind the computer or laptop, just researching diabetes, because I became obsessed with in a really good way. Because I knew that. Okay, this is a very, very serious condition. It's something that is out of my control. Now I have it, there's nothing I could have done to bring it on. There's nothing I could have done to prevent us. But it's in my best interest now to know as much as possible. And for any diabetic out there, the more that we know, inevitably the easier things can be. I kind of just became obsessed with obsessed with trying to understand how different exercise would affect me how stress would affect me how lack of sleep would affect me, how hydration, different foods, these kinds of things. And it was it was almost like a guilty pleasure. I was just constantly constantly looking at open research and


Stacey Simms  14:42

we're going to talk about what works and I'd love to get some advice for everybody from you know, the very casual athlete to somebody who's really, really more involved in fitness. But I got to ask, did you have any mishaps in the beginning? Did you try anything that you said that's not going to work?


All right back to Eoin answering that question. But first bottom line, you need a plan of action with diabetes. We've been lucky that Benny's endo has helped us a lot with that and that he understands the plan has to change. It's been he gets older, you want that kind of support. So take your diabetes management to the next level with Dario health. Their published Studies demonstrate high impact results for active users like improved in rage percentage within three months reduction of a win see within three months and a 58% decrease in occurrences of severe hypoglycemic events, try Dario’s diabetes success plan and make a difference in your diabetes management. Go to my forward slash diabetes dash connections for more proven results and for information about the plan.

Now back to Eoin answering my question about whether he's tried something in his workout or his diet routine that just didn't work.


Eoin Costello  15:59

Thankfully, I didn't have anything dramatic. Thankfully, I highlight. But yeah, of course, there's so much trial and error with diabetes and from throughout throughout the last 10 years, I have just had thousands of highs, maybe not 1000s of lows, hopefully keep them keep them less. But the more that I tried different things, the more that I tried to get out there the more exercise that I did on a test and different foods with different amount of amounts of insulin. There's just so much trial and error. But hopefully, I didn't have anything like decay or I wasn't kind of rushed into hospital board. Well, fingers crossed. Yeah, let's keep let's keep it. So it was more so just the highs and lows as they call them rather than anything too serious. Thankfully,


Stacey Simms  16:47

well, and I'll be I'll be clear on I was thinking more like you ate a banana before a workout. And it was not the right idea or wasn't so much like DK. Okay, I'm not too worried about, you know, that kind of mistake. I was just thinking about something smaller. But that's up to you.


Eoin Costello  17:03

Yeah, of course, there's times where I remember when I, I think it was been a few weeks after I was diagnosed and I was kind of getting back into the gym. But I was also kind of coming into a honeymoon phase quite quickly after I was diagnosed. And I was taught and I was learning to carb count for one unit of insulin for 10 grams carbohydrates. And I remember, I finished the workout in the gym, I went down to the changing room to get changed up shower, and I had a banana. I weighed out the banana. It totaled 50 grams of carbs. So I thought, Okay, perfect. I've waited out I've done everything I'm supposed to do. I took five units of insulin and ate a banana. But I hadn't fully realized the impact of a potential honeymoon phase. So I quite quickly plummeted. And I now have to get two liters orange juice in quite quickly. But I'm just mistakes like that. Just where you think you're on the right track with an insulin dose of carb count or something as diabetes does. It sometimes surprises you?


Stacey Simms  18:06

No doubt. I hate bananas. That's funny. That's why I gave that as an example. I'm not surprised that you had an incident with a banana. No, no, don't. Not one of my favorites. What kind of technology do you use? Do you use a CGM? Do you use an insulin pump?


Eoin Costello  18:24

So I've always used MDI, my mom, Nova rapid and Lantus. But only this year, I've got a Dexcom G6. And as you can imagine, that's completely opened up my eyes to a 24 hour period with my blood sugar rather than just that snapshot in time with a finger prick.


Stacey Simms  18:41

What motivated you What led you to start using a CGM,


Eoin Costello  18:45

it was more so they had become available in Ireland. So thankfully, in Ireland, we are with something called the long term illness scheme. So if you're diagnosed with Type 1 diabetes in Ireland, all of your supplies are covered, which is unbelievable. But only recently they had included the Dexcom G6, so it was actually only offered to me almost a year to today. It's been a game changer. It's just and particularly with exercise, it gives you so much more freedoms or much more confidence when you are to go to the gym or you are to go for a run or whatever it might be. It's so


Stacey Simms  19:19

interesting with exercise because my son who lives with type one has played lots of different sports. And it's always amazing to see those rises in blood sugar that comes not from food, but from exercise and the different types of exercise you have to learn what to leave alone with treat for. Did any of that take you by surprise? Did you see those? I call them adrenaline highs?


Eoin Costello  19:43

Absolutely. Yeah, I suppose what really surprises me and still to the day What surprised me so much is the drastic difference between and this is obviously from my own experience, the drastic difference between heavy weight training and something like a rant So to give you an example, if I was to actually, only this morning, I was in the gym, and I was doing relatively heavy squats. And when I work with heavier weights, my blood sugar skyrockets. So I've now gotten to the stage where more often than not, I will have to pre bolus for a heavy leg workout, because I'm anticipating that big spike. Whereas if I'm to go for a run, I'll know that after, say, 2030 minutes, my blood sugar's are inclined to trend lower. So ideally, I always try and go for a run with little to no insulin on board. That's why I like to run first thing in the morning. And then we're training in terms of weights, depending on what it is. I'm training. Like, if I'm doing heavy squats, I may need to pre bolus as if I'm having a meal, which is strange.


Stacey Simms  20:52

Yeah, yeah. But you have to figure all that out. I mean, it's it's incredible. And I always feel like just when we have one sport figured out, he decides to change. keep you guessing, right. You can't quit baseball. We figured it out. Now. He's done baseball, and basketball, football, a little bit of lacrosse, and now he's really enjoying wrestling. So I think wrestling is going to take us through high school, we are still figuring it out. Because it is you know, practice is super intense with lots of cardio and then sometimes wait on alternate days. And then the meats are just a lot of standing around and then these bursts of energy. So you know, it's


Eoin Costello  21:27

what would Benny's blood sugar? How would it react if he was saved on an intense wrestling session?


Stacey Simms  21:34

Well, the practices are to the point where we have the example, the very first wrestling practice he ever went to he ate 85 uncovered carbs during the two hours, he just liked having to stop No way. It was real. It was unreal. He was he's an active kid. But at the time, this is two and a half years ago. Now. He wasn't as fit as he is. Now to be quite honest with you, he had taken himself on as kind of a project and between eighth grade, and now he's about to be a junior. So two and a half, three years, he's really transformed his body. He's gotten a lot more fit. He's lost weight, he's muscled up. It's been it's been fun to watch, and kind of inspiring as the mom who just like walks the dog and works out a couple times a week. But he's really done well. So that first practice, though, was amazing. So we knew we had to make some changes. So we you know, we adjusted insulin. And as he exercised and became more sensitive, right, he responded better to the insulin, we were able to make a lot of adjustments. So if we knew it was a heavy cardio day, he would change his basal rates going in, in having control like you with Tandem has kind of changed that. But still, if it was a heavier weight day, he actually he kind of wait, no pun intended, he waits out the high, he doesn't like to dose for it too much because he will drop. And then during a meet, he just tried to kind of ride it. But he's 16 on. So sometimes that means ignoring it. To be quite honest with you, I can imagine and just getting through. So as his mom, I'm like, you know, if you just gave yourself a little bit you could He's like, it's fine. It's fine. It's fine. And it's fine. He's doing very well. He's very healthy. Our endocrinologist is pleased. So I can't really criticize him. But I but I'd like to


Eoin Costello  23:23

as mother's ward. Well, I'm sure look, he's he's in fantastic hands, obviously. But it's it's amazing to hear that he has stayed so active. And as you say he changed his body and seeing the difference with even the insulin requirements. Oh, yeah. Amazing.


Stacey Simms  23:37

Yeah, it's been great. So let me get I don't want to talk all let us let me get back to you. Sorry. When you talk to people about diabetes and fitness, and let's be honest, you are you know, fitness seems to be kind of your job. This is something that you are really passionate about. I'll share some videos and some photos if you haven't seen Eoin he's he? Are you a model? You're a fitness model in some ways, right? Terrible question. You're


Eoin Costello  24:03

gonna laugh at regression? Well, yeah, I'm with a model agency in Dublin, but it's not my my full time job.


Stacey Simms  24:09

Okay, so you can imagine how fit he is to have that as even a part time job. So let's start though by talking about people who are moderately active with diabetes, right? They may not they may not expect to be on the cover of, you know, a Fitness magazine, but they want to get in better shape. What kind of advice do you have for somebody who is worried about going low? Or is hearing us talk about these highs and isn't quite sure what to do? Where do you start?


Eoin Costello  24:35

Yeah, absolutely. Good question. And it's, it's something that I always touch on too. I make it quite clear that because I am so into fitness, I would never expect anybody to, you know, go to the gym five or six days a week and go out for runs multiple times a week. It's what I do with what I love. It's not for everybody else. But it's important that as a diabetic, we have some sort of activity in our life. Whether that be Going for a short walk a day, whether that be playing tennis, whether it be going for a swim, anything that you enjoy is the first piece of advice. It's important that if you want to exercise or if you're trying to introduce a new sort of regime or routine into your into your life, it's important that you enjoy it. Because if you do, you're a lot more inclined to continue to do and continue to see the benefits from it. So if somebody is concerned about the highs that I was speaking about, or the lows that I mentioned, what Ron's there is so much trial and error. And it's important that people always remind themselves of when I'm starting something new. And this can be with any aspect of your life. But particularly with diabetes, when I start something new, I'm probably gonna see some highs, and I'm probably gonna see some lows. And I think being aware of that, first of all, is very important, because you're not going to be as frustrated or discouraged when you do inevitably see these highs and lows. But if I was to offer somebody advice, who is trying to start walking or trying to start, say, even a light jog a couple times a week, the first thing is always be prepared for a high or low blood sugar, particularly low blood sugar, because the impacts of a low can obviously affect you quite quickly. So the first thing is always have your low treatment and start small, you don't need to aim to run a marathon quite quickly, you can think, Okay, I'm going to start this week, walk around the block, see how my blood sugar react, I might do to walk around the block, see how my blood sugar reacts to that. So instead of that kind of all or nothing mentality, you really need to ease your way into it. Because when you ease your way into things, you can steadily see any patterns or trends which approach, it might not be the best idea for somebody to say, Okay, I haven't gone to the gym ever before, but I want to start going, therefore, I'm gonna go to the gym six days a week, yeah, it's gonna be very, very, very difficult to understand how your body and how your blood sugar reacts to that. It could be I'm gonna go to the gym one day a week, and I'm gonna see what my blood sugar's like before, I'm gonna see what my blood sugar is like, during, and after. And if you're aware of the trends and patterns, like I said, with your blood sugar, it gives you more confidence over time. And the more confidence you have with your blood sugar, the easier it is to continue to do more.


Stacey Simms  27:27

And then for the people who want to do more, because we have quite a few people who listen to this show who are very much dedicated to fitness activity, athletics, you know, for those high achievers, any tips to kind of stay at that high level or get there,


Eoin Costello  27:43

I think a lot of that would depend on what that specific person's goal is. But if it is, say, to change your body composition, for example, and you really enjoy going to the gym, you like lifting weights, you can see your body changing over time, and you want to continue doing that, because it's it's what you love. Again, it's about enjoying it. But the priority will always be your blood. And I think no matter who you are what you do in terms of your exercise, whether it be intense, or just kind of casual each day, the priority is always blood sugar. Always, always always, for me anyway, that's how I feel about. And I think if you have a good understanding of how you're reacting to these certain things, then again, it gives you the confidence to push further and further and further and further, if that's what you want to do. So, to give another example from from my own experience, since the lockdown in Ireland, the gyms high close now, they're opened back up, thanks, thankfully. But when the gyms closed, I got big into running. And the first few rounds that I went on, it was again, a lot of trial and error, I would see a few lows, I would see my bloods dropping at a certain distance or a certain time. But the more I did it, the more my confidence grew. And then the more you do, you can kind of see yourself setting yourself goals. So I did a running challenge, which was 48 miles over 48 hours. So you'd you'd run for miles, every Yeah. So it was four miles, every four hours for 48 hours. And before I started running, I was thinking arc like could I could I do that, like with my butcher we get in the way is that realistic foot The more that you do, you can kind of see yourself getting closer and closer and closer and closer to doing these things. So if there is somebody who, as you say Stacey is a high achiever, or really enjoys their training, if you have that goal that you want to work towards, you can tweak your training or, or even tweak your diabetes management towards that, if that makes sense.


Stacey Simms  29:50

Yeah, I'm curious though you said you know the blood sugar is your top priority. What do you mean by that? Do you mean staying in range just knowing where it is? You know? When you say your blood sugar is the most important part of your workout, can you just talk a little bit about what you mean by that?


Eoin Costello  30:05

Yeah, of course. So I mean, not even specifically with training just in general, I always went out obsessing about it too much, I always like to prioritize my diabetes health. And for me, that is trying to keep my time and range in range as much as possible. Because I know that if I'm fluctuating high and low, and my time and range isn't where I would like it to be, that can almost immediately affect my quality of life for that for that day. Because I know that my clothes are up and down, not gonna feel the best and gonna feel as if I'm on the backfoot to my blood sugar kind of chasing them. So I always like to be as prepared as possible, so that I can almost look ahead those 2345 hours into a time where I'm working out to see, okay, I've eaten I've eaten this meal, I've taken this insulin. How can I expect that to react when I say I prioritize as I prioritize it, because I know that I won't be in the best form or I won't be able to train as much as I would like, if I'm having difficulties with my blood sugar.


Stacey Simms  31:12

What do you like to use to treat Lowe's Do you have a go to


Eoin Costello  31:16

when I'm disciplined with Lowe's, my go twos are these lift glucose drinks, or else dextrose tablets was easier said than done. When you when you're not having low blood sugar, but it's a whole different story, when you're waking up at 3am with a low blood sugar. And if I wake up at 3am, with a low blood sugar, the kitchen is just raided. And it's I always say I'm like a bear going into a picnic sometimes just can't be stopped.


Stacey Simms  31:44

Let's you know, it's nice to know you're human. I mean, that's that that takes a lot of discipline to just go for the tabs.


Eoin Costello  31:51

It depends on how low I am. If I'm dipping just underneath the time and range, it's easy enough just to stick to the glucose. But if I know I'm going lower, it's game over in terms of the treatment. And I know that then I'm going to inevitably see that kind of rebound. Hi, yeah,


Stacey Simms  32:09

do you have any foods that you really like to indulge in every once in a while


Eoin Costello  32:15

there is chips or crisps? We call them over here. And they're like, we thought they're beautiful things really crunchy. You're making me think about them. They're just these really crunchy salt and vinegar chips, as you call them. And they do these massive bags in Ireland. So I always have a few of them in the house. Just I probably eat them too often. Maybe that's why I train so much.


Stacey Simms  32:42

You know, I did want to ask you about your podcast. I'm curious. You know, I mean, I was in broadcasting. I know why I started my show, gosh, many moons ago. Why did you start your podcast? How did that come about?


Eoin Costello  32:55

I had never planned on us to be honest. And I think when I initially set up an Instagram page two, as you said earlier, Stacey to kind of help give people advice that I might be able to offer or what just experiences from my own life, it was almost like a snowball effect where the more that I shared, I felt as if the more I had to say. And then it almost came from a sort of selfish standpoint because I really wanted to interview other diabetics. And like throughout the past 10 ish years, I've always learned more from other diabetics than I have anybody else. So I felt that having a podcast gave me an opportunity to speak to as many diabetics as I could and to hear from their experiences. So it was to get other people on to share their experiences. And some of the guests that I've had on have been amazing. And I know you're going to be on shortly, which I can't wait for, for as well. I call this the insulin podcast redefining diabetes. I call it that because, well, for two reasons. Number one is I feel that diabetes is so globally well known. Everybody knows that it exists. But it's so widely unknown, and people don't truly understand the the intricacies that you're just a normal day entails. So I call that redefining diabetes, because I want to hopefully redefine what society see diabetes as and also, more importantly, what a diabetic sees that IBS is, it's really important for me that any diabetic out there realizes that look, it's not an ideal situation to be in as we know, it's a difficult condition to live with. What if we can learn to redefine that in our own head and kind of scratch on the surface to see what positives can we take from this, it doesn't have to just be a negative impact on our life. There can be positives from it, and I feel from sharing some of my own experiences and more, I suppose particularly more with the guests. It helps get that point Cross I've had people who've climbed Mount Everest ran across Canada, Chris Rutan, who was a motivational speaker who has obviously been on your podcast too. And I just think it can offer a lot of people value as your podcast those you've, you've been going for years now. And I know there's obviously 1000s of people that get such a massive benefit from this. So I'm hoping that they do too from my podcast.


Stacey Simms  35:23

I'm sure they do. It's a great show. But before I let you go, I'm curious, you know, you want to redefine diabetes. So if you look back at Oakland, 10 years ago, right, in the hospital, your brothers are bringing you soda and candy. And, you know, giving you a hard time, would you say that, at least to yourself, the definition of diabetes that you got that day, that in these 10 years? Since that you, you've redefined that for you?


Eoin Costello  35:51

I would like to think so. Yeah, I think if I was to put myself back in that hospital bed that was that 10 years ago, and to see how far I've come even just in terms of my own management and how I view my own diabetes? Yeah, I think I've redefined it for myself, which I'm proud of, I have to say,


Stacey Simms  36:09

yeah, you shouldn't be It's okay. That's great. Eointhank you so much for joining me, it was a pleasure to talk to you. I'm looking forward to talking to you for your show. I'm always it's a little weird to flip the microphone around and be interviewed. But I'll try to behave myself. Thanks. Great. Thanks so much for joining me today.


Eoin Costello  36:27

Thanks, Stacey. I can I just quickly say, I just want to thank anybody who's listening. I know that anyone who listens to the podcast is obviously looking for value. And I know that your time is an important asset. So I hope you've been able to get something from this episode. And Stacey, I'd like to thank you because this podcast for me personally has has brought me a lot of value. And it's offering people 1000s of people out there huge support and reassurance around their diabetes. So from a type one diabetic. Thank you, and I appreciate you.


Announcer  37:03

You're listening to Diabetes Connections with Stacey Simms.


Stacey Simms  37:08

For more information about Eoin in my show notes, you can always find out everything at Diabetes, Connections comm if you're listening in the podcast player, it may be a little difficult to see everything. Some of them don't support the links or the transcript I put in you can always come on home to Diabetes I so appreciate talking to Eoin. It was so kind of him to say what he said there at the end. I never know what to say. But what a nice comment. And I really do appreciate that I do highly recommend his podcast, the insuleion podcast. It's a lot of fun. He's so engaging, as you heard, and it really is terrific. Please check it out.

Up next, we're gonna talk about space force. Did you hear about this guy with type one made it in? What does that mean for military service in the US? We'll talk about it. But first Diabetes Connections is brought to you by Dexcom. Dexcom has a diabetes management software called clarity. Do you use this because for a very long time, longer than I'd like to admit, I thought it was just something our endo could see. But it's really helpful. Now I have it on my phone, you can use it on both a desktop or as an app. And it's an easy way to keep track of the big picture. I find I use it a lot when we're adjusting things you know, which felt for a long time like it was non stop at age 16. Any kind of seems to be leveling out on growth and basil rates, at least for now. But clarity really helps us see longer term trends and helps us not you know over react, the overlay reports help put context his glucose levels and patterns. And when you share the reports with your care team, it's easy for them to get a great idea of what's going on and then they can better help. managing diabetes is not easy. But I feel like we have one of the very best CGM systems working for us find out more Diabetes and click on the Dexcom logo.

And an article from Stars and Stripes was making the rounds. This is a military publication. And you may have seen this really interesting. Tanner Johnson was due to graduate from the US Air Force Academy in Colorado. When he was diagnosed with type one. They allowed him to return but they referred him for counseling and they told him this is going to be the end of your military career. But he told the counselor, I want to stay in what if we could demonstrate that I could do it. He was able to get in front of the academy superintendent and talk to him. And apparently that personal meeting made a big difference because the 10 General Richard Clarke reportedly went to bat for Johnson. There's not a lot of detail in the article about the process here. But Johnson was allowed to graduate in 2021 and he was accepted into the space force.

If you are not familiar. This is I don't blame you because it's very, very, very new. Us space force is the sixth independent US military service branch. Of course it is tasked with missions and operations. In the space domain, it was signed into law at the end of 2019. And honestly, I know a lot of people think that this is something that former President Donald Trump just kind of made up and put into existence. But the idea has been around since the 50s. And it was seriously considered in the early 80s by Reagan. So I only say that to say, this is part of the US military. I saw a couple of Facebook comments about Tanner Johnson questioning whether this was really a military service assignment for somebody with type 1 diabetes, I believe it is, is it combat? Ready, right? Because Can you be deployed when you have type 1 diabetes is still the question. And that certainly doesn't seem to be something that is being planned for with space for so I obviously have a lot of questions, as I'm sure you all do, as well.

So I reached out to the reporter who wrote the story and said, you know, can you connect us I'd really like to talk to Tanner, and she reached back immediately. It was fabulous. I was so grateful for that. Thank you, Karen. And she said, I will ask him, I will reach out but he just started training with space force. And he will need authorization from leadership to talk to you she said quote, they tend to say no. So we'll see what happens. If you know, Tanner Johnson, or you could get me an interview with him. Please reach out. Let me know how to be connected. Because I have a lot of questions as I know you do, too. But what an inspirational story, what a big first step for the US military. We've talked to other people who have been diagnosed while they are already in the military, and they've been able to stay active. But I don't know anybody who was diagnosed during training, who was able to stay in.

So we'll keep following this one. But I'm putting this under Tell me something good because man, that's the last big barrier. We've got, you know, airline pilots in last couple of years can be type one now. Military service is the one that we still, you know, after that it'll be astronaut. So I think it's fantastic.  If you have a Tell me something good story, please reach out Stacey at Diabetes or post in our Facebook group. I ask there periodically. I love sharing good news.

Okay, before I let you go, just a reminder, join me on Wednesday, every Wednesday on Facebook Live. I do a very quick five to six minute newscast give you the headlines in diabetes of the last week all types of diabetes, not just type one. And then I turn that around. We make it a podcast episode on Fridays. But if you want to watch that Facebook Live, then it's on YouTube. And I you know I put it all out on social this week. If you're listening as this episode goes live on August 10, the Facebook Live is going to be earlier. I'm still actually making my schedule because Wednesday just is some kind of bananas day. And I have to do the newscast earlier. So watch the Facebook space. It'll probably be three o'clock in the afternoon 330 something like that. It's usually 430 and I am getting a great response. So I'm so glad you all seem to enjoy it. Thank you very much. If you have news tips, send them my way too. And that's it. Thank you so much to my editor John Bukenas from audio editing solutions. Thank you so much for listening. I'm Stacey Simms. I'll see you back here in just a couple of days until then, be kind to yourself.


Benny  43:11

Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged

Jul 27, 2021

When Gary Hall Jr was diagnosed with type 1 diabetes in 1999 his doctors told him to give up competitive swiming and drop out of the 2000 Olympics. Instead, he charged ahead and became the first person with T1D to take home an Olympic Gold Medal. Hall won Gold in Sydney in 2000 and again in Athens in 2004, adding to the medals he'd won in 1996 before his diagnosis.

Stacey caught up to Gary at this summer's Friends for Life Conference and asked him how he got past what his doctors told him. He also shared what he tells newly diagnosed families today.

Plus, Benny is home – after a month abroad.. Stacey has and update on her son's trip to Israel and how they managed his diabetes for that time.

This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

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

Join the Diabetes Connections Facebook Group!

Sign up for our newsletter here


Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!

Get the App and listen to Diabetes Connections wherever you go!

Click here for iPhone      Click here for Android

Episode transcript below: 


Stacey Simms  0:00

Diabetes Connections is brought to you by Dario health. Manage your blood glucose levels increase your possibilities by Gvoke Hypopen the first premixed auto injector for very low blood sugar, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.

This is Diabetes Connections with Stacey Simms.

This week with the Summer Olympics underway and swimming taking center stage this week, I caught up with gold medalist Gary Hall Jr. The very first person with T1Dto take gold. He talks about what's changed since then.


Gary Hall, Jr  0:40

I rely heavily on the convenience of CGM, I mean being able to see where my levels are trending. In order for me to compete at the Olympic levels and do the necessary training, I was manually testing with finger sticks 20 times a day,


Stacey Simms  0:55

when Gary was diagnosed in 1999. He was told he'd never swim competitively. Again, we talked about how he got past that and what he's telling families today, and Benny is home my son after a month abroad, I have a little bit of an update on how it went. 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'm always so glad to have you here. You know, we aim to educate and inspire about diabetes with a focus on people who use insulin. My son Ben, he was diagnosed right before he turned two back in 2006. My husband lives with type two diabetes, I don't have diabetes, I have a background in broadcasting. That's how you get the podcast.

And one of the fun things about going to diabetes conferences is that you don't know who you're going to run into. It turns out that just a few weeks before the postpone to Summer Olympics were to start there was an Olympic gold medal swimmer at the recent friends for life conference. So great to be able to go back in person finally kind of feeling our way through this and hoping that, you know, we'll see what happens for the rest of this year but hoping that we can get back to it. But once I saw that Gary Hall Jr. was speaking to families, attending friends for life for the first time. I knew I had to ask him to be on the show. So he graciously agreed he met me just a few hours later we did this interview in person you will hear me during the interview referred to how far he had to walk and I mean it. This conference center is huge. And I appreciate him basically meeting me at the farthest point from where he was. And you'll also likely hear some background noise or some music.

If you are not familiar Gary Hall Jr. represented the United States at swimming in 1996 in 2002 1004, it's really quite a family legacy. His father, his grandfather, and his uncle all competed on the US Olympic swim team. Paul won silver in 96. And then he was diagnosed in 1999. With type one, his doctors told him he would never swim again competitively. But then in 2000 in Sydney, he became the fastest swimmer in the world. He broke his own record in 2004. And by the time he retired from competitive swimming in 2008, he had won 10 Olympic medals, including five gold. In these current Olympics.

There is a competitor from the US with type one, Charlotte Drury. She's not a swimmer. She's a trampoline gymnast. And I talked about her during in the news last week, our last episode hoping to have her on the show in the near future. I'm really interested to hear the difference because it's only been what a little bit more than 20 years since Gary Hall Jr. was diagnosed and told no way dropped out of the Olympics, you'll never do it. And Charlotte Drury was diagnosed and three weeks later returned to her full training as she was diagnosed this year, she was diagnosed right before the trials. So it's a completely different world in these 22 years, let's say in between those diagnoses. So I'm really interested to kind of talk to her in the near future hopefully.

Alright, so let's get to it. But first Diabetes Connections is brought to you by Gvoke Hypopen. And when you have diabetes and use insulin, low blood sugar can happen when you don't expect it. That's why most of us carry fast acting sugar. And in the case of very low blood sugar, why we carry emergency glucagon there's a new option called Gvoke Hypopen  the first autoinjector to treat very low blood sugar gvoke hypo pen is pre mixed and ready to go with no visible needle. In usability studies. 99% of people were able to give Gvoke correctly find out more go to Diabetes and click on the gvoke logo gvoke shouldn't be used in patients with pheochromocytoma or insulinoma visit gvoke slash risk.

Gary, thank you so much for walking the length of the convention center to talk to me today. I appreciate it.


Gary Hall, Jr  4:50

Yeah, I'm getting my steps in today. I feel really good about it. And I'm also having a lot of fun. Awesome. I'm


Stacey Simms  4:56

glad to hear that. You spoke to the first timer. Families this morning people who have are experiencing their first time to friends for life. Why was it important for you to speak to them? What were you talking to them about?


Gary Hall, Jr  5:09

The antiquated expression is shell shocked. Now, I think it's PTSD. But when you go through a diagnosis, it hits your heart, it hits your family members and loved ones really hard. And you have a lot more questions than answers. And desperate is a word that comes to mind when reflecting back on my own diagnosis, what makes this such a great convention, such a great organization, friends for life, and children with diabetes. And everybody that attends, you know, it's that sense of community here that we're not in this alone, that there are others out there living and dealing with this condition in a similar way that understand your struggles. And that's really all we want. In some ways, it's just to be understood, you know, in such an emotional, traumatic time and experience. And so for first timers, many of them are newly diagnosed, or the parent of a newly diagnosed child, it means a lot to me, because I haven't forgotten what it's like, in that short time after a diagnosis and to be able to offer some support and encouragement and hope, hopefully, hope, to those makes me feel really happy.


Stacey Simms  6:34

But when you were diagnosed, there was no one to lead you through it. There is no had been knowing with your experience or the experience you wanted to have. And you've very famously shared, you know, what a difficult time that was and how emotionally low it brought you. I don't want to take you through that whole thing. But I'd be curious to know, where you found inspiration. How did you get through that time when they said sorry, kid, you're done?


Gary Hall, Jr  7:00

Yeah, it took time. It took time, you know, there are stages of grief, and waited my way through that mark. And found, in some ways, fortunate that I was a top level swimmer prior to the diagnosis. Because I had people reaching out to me, this is unusual, that's not the norm. And so I was able to very early connect with jdrf children's Congress, and children with diabetes. I was here in 2005. When this was a new thing.


Stacey Simms  7:40

I'm gonna ask you about that. I heard there with some some swimming some kids. Yeah, it stands in the pool.


Gary Hall, Jr  7:46

You can count on that when it's here at the Coronado Springs Resort. Disneyland world. Yeah, lots of swimming. Lots of smiles. Good memories.


Stacey Simms  7:57

I bet I bet. But I mean, not to dwell on the difficult, but it's wonderful that they reached out to you. Right. And that is, that is an unusual experience. But you still had to find a way to say to yourself, my dream still gonna happen?


Gary Hall, Jr  8:12

Yeah, there was no certainty in that pursuit. I didn't know what was possible. But this is life, right? Like, we don't know what we're capable of, until we put ourselves out there. And I was willing to try and was really fortunate to connect with Dr. Anne Peters and, and has been here in the past and spoken so many people and she's great. She's, I love her. I love hen Peters. She was the inspiration. It only came in the way of Yeah, let's give it a try. You know, is that that was such a departure from these other doctors that I had initially come in contact with that, um, yeah. If you set your mind to something and try to figure it out, you're gonna have some success, eventually. So that's what we've kind of set to work doing. And like I said, there's no certainty that I would be the fastest swimmer in the world one day, but that's what happened.


Stacey Simms  9:20

Yeah. When you look back at that time, and you think about how you manage diabetes Now, what's changed for you?


Gary Hall, Jr  9:29

The game changer in diabetes management was the continuous glucose monitoring device and Dexcom came out with that device just changed with diabetes management, and it was just almost like, how come I I couldn't have had this 20 years earlier? You know, or you know, I guess it wasn't that long when I but 10 years earlier. I rely heavily on the convenience of the sea. gam I mean, being able to see where my levels are trending, in order for me to compete at the Olympic levels and do the necessary training, I was manually testing with finger sticks 20 times a day. And that doesn't even come close to comparing to you know what the Dexcom has to offer? Yeah, that's been the biggest change area. You know, in 2000. I was diagnosed in 99. last century,


Stacey Simms  10:25

turn of the century turn of the century,


Gary Hall, Jr  10:27

you know, the pumps were really just becoming popularized at that time. And I like pumps, a lot of people swear by them and love them. But it was just I never felt connected. That's the first time I've ever used that. Upon I just caught myself. Anyway, I yeah, I just never the attachment. And maybe it was because I was swimming in the water and just wearing a skimpy Speedo or whatever body conscious, I don't know. But I was able to get over that with when the CGM and in the street behind the speedo location.


Stacey Simms  11:05

We get a little personal on this show.


Gary Hall, Jr  11:06

Yeah, so yeah, but the benefits to me were worth a wearable. Yeah, I live with the pump companies were doing but at the time 2000 everybody was, you know, it was parading in the convention halls. You know, the pumpers, you know, is this big movement and game changer, and you know how diabetes managed, but I found after trying all the pump set, you know, I was getting good, you know, range as long as the testing was the key. And as far as long as I was willing to give myself a shot. You know, pen needles are pretty easy to take. So that's just personal preference.


Stacey Simms  11:46

I just want to ask you about the 20 finger sticks a day, because I remember my son went seven years without a CGM. And it was, especially in the pool, this pruney fingers, it's really hard to do finger sticks. Was that an issue for you? I mean, do you have memories of like, oh, not this one. I'll try this finger or I mean, it must have been slipping around on the pool and the wet test strips.


Right back to Gary answering that question. But first, one of the things that makes diabetes management difficult for us that really annoys me and Benny isn't actually the big picture stuff. It's the little tasks all adding up. Are you sick of running into strips? Do you need some direction or encouragement going forward with your diabetes management, with visibility into your trends help you on your wellness journey? The Dario diabetes success plan offers all of that and more. No more waiting in line to the pharmacy. No more searching online for answers. No more wondering about how you're doing with your blood sugar levels, find out more go to my forward slash diabetes dash connections.

Now back to Gary answering my question about what it's like checking your blood sugar while you're swimming.


Gary Hall, Jr  13:00

So yes, drying off properly is very important. There are times where Yeah, there's just a watery blood thing I don't Yeah, it was juggling, you know, and a lot more to carry and a pocket. You know, I like to travel white empty pockets. So now I've got my smartphone and, and a pen. And so I appreciate probably that more than anything because I you know, bulky pockets, slow you down.


Stacey Simms  13:29

And my listeners will definitely want to know, if you have any tips and tricks keeping that Dexcom on in the water. Everybody's got a different method because everybody's skin is different. I'll give you that disclaimer. Any advice or any thing to share?


Gary Hall, Jr  13:41

Yeah, I know. I use duct tape.


Stacey Simms  13:45

I need to just narrate. He looked around almost ashamedly. Yeah, I know.


Gary Hall, Jr  13:53

I'm just hardcore that way. I guess I'm sorry. I kind of like the roughness of it. And so yeah, when I need securing I get that that silver ducted.


Stacey Simms  14:06

I'm almost Sorry, I asked. You're meeting kids here. You're talking to parents. You know, this is a family conference. There are a lot of adults with type one as well. But I remember when my son was first diagnosed, anybody that looked like they were living well, with type one, I would just great. How did you do it? What did you do? You know, what's the key? And I know there's not really an answer for that. But I'm curious what you say, because I'm sure parents have already asked you.


Gary Hall, Jr  14:30

What do you have to do to stay healthy? And?


Stacey Simms  14:34

Well, I think it goes beyond that. I'll change my question. Beyond keeping your blood sugar in control and listening to your mom. Right and doing everything. Yes, always. I'm curious if there's more to it, because for me, I find that my son thrives the best when he is he's allowed to take risks. He knows that we trust him. And even if he messes up, you know, hopefully it's in a safe enough environment. He's 16. Now, just for context, So we're giving him a longer and longer rope. And I think that's important for thriving with diabetes is letting your kids make mistakes, letting yourself make mistakes. I'm curious if anything like that kind of helped you. I mean, you're somebody who had such high goals that had to help you thrive as well,


Gary Hall, Jr  15:16

well, I've got children, my daughter is 15, my son is 13. Now, and they don't have diabetes, knocking on wood, and they're at an age where I remember from my childhood independence as an important thing. And as a parent, you want to protect them in a shelter them, right. And even more, so when your child has diabetes, we have to let them go, they have to leave the nest at some point, and develop that sense of independence. And so that's difficult for a lot of parents here. Especially newly diagnosed, you know, that really have that instinct to protect and shepherd and, and so then there may be some mess ups, you know, and learning curve, and trial and error process, there's air involved, and there certainly was in my learning curve and diabetes management. Eventually, you get through that, and they're able to take some ownership of it. And I think for me, I've always had a fierce sense of independence. And so that was really important for me, not just in my pursuits in the pool, but also in in diabetes management.


Stacey Simms  16:34

Summer Olympics are coming up. What can we look for? Like, can you tell us anything? We should be like watching behind the scenes or stuff we don't know, or, you know, fun stuff about swimming? I mean, you you made such a show of it.


Gary Hall, Jr  16:48

That sport is entertainment. So don't fault me. No, no. I had some fun. That's all I was doing. horsing around, but it for Look out, I went to the Olympic trials for USA Swimming. They were in Omaha, Nebraska just a couple weeks ago, and saw the team qualify. And what an intense meat that is, you know, they take first place and second place, third place goes home, I was able to see some outstanding swims. I'm a fan of the sport. I've been following it closely my entire life and the guy, the next guy, you know, because there's certainly been a lot of merit of, you know, Michael Phelps, his retirement, he's been a pillar of USA Swimming for so long. You know, who's going to replace that pillar. Caleb dressel is the guy. And everybody will know his name after these Olympics. He's really just a phenomenal swimmer and great role model. I expect good things out of him on the women's side. Katie ledecky, she was around in the last Olympics. She is a sweetheart, she's a darling, she's exactly who you want your daughter to grow up to be like, so Team USA is in good hands. There's a lot of swimmers with them, shoulder to shoulder, representing the United States and we can count on them to do a great job and represent us really well.


Stacey Simms  18:10

And then just one last question before I let you go. Kids listening families listening with type one who want to swim, high school level college level, maybe dreaming about the Olympics. Any advice for them? I guess I'll be fishing here a little bit. But feel free to get specific. Obviously, you want them to follow their dreams?


Gary Hall, Jr  18:26

Yeah. Listen, I say it often, you know, you don't have to win an Olympic gold medal to enjoy the benefits of sport. You know that there is social camaraderie, this built in a support system and you're surround yourself with other young ambitious people that have goals and work hard to chase them down. And, you know, this is an exclusive to swimming. Obviously, I'm a little bit biased. I think it's the greatest sport in the world. It is but you know, we'll we'll accept the benefits of other sports in addition to I love sport, I love what it teaches the data. It's overwhelming kids that are involved on us in a sports program on a sports team average, they outperform their classmates by one full grade in the classroom. You know what it does in stress reduction, and overall health benefit is tremendous. You know, if there was a single drug that had the efficacy of exercise and provided the same benefits of exercise, every single doctor in the world would prescribe that. It doesn't have to be swimming doesn't have to be for a gold medal. But go out and have some fun.


Stacey Simms  19:43

Gary, thank you so much for talking to me.

You're listening to Diabetes Connections with Stacey Simms.

Lots more information about Gary in the show notes at diabetes dad or wherever you're listening, most podcast players will let you access the notes. But I do put a transcript in now to every episode. And that can get a little bit long. So if you don't like the way it looks in whatever player you're listening to just head on back to Diabetes and click on the episode homepage. And I'll be honest with you, I don't usually share this kind of stuff, but I kind of wish I prepared a little bit better. I mean, I didn't realize I was talking to Gary until I talked to Gary. Right. I met him there. And he said, Sure, I'll come on. And then we did the interview. And he has so many other things I wish I had asked about he punched a shark. I guess this dude who's in the middle of a shark attack, the shark was attacking his sister, and he punched the shark. I mean, this is a crazy story, his sister's okay. And he's also been very outspoken about doping during the Olympics. I'd like to talk to him again, maybe we'll be able to do an Olympic Roundtable, one of these days with the other athletes who have competed, but he was very gracious to talk to me and to make the schlep all the way down the hallway to where I was, and you're laughing, it probably takes a good 15 minutes to get where I was in the conference center there at the beautiful Coronado Springs Resort at Walt Disney World. That's where they have the friends for life conference every year in July.

All right, up next, Benny is home. Many of you know that I haven't really felt like I could breathe for the month that he was overseas. So I'll tell you a little bit about how we handle that. But first Diabetes Connections is brought to you by Dexcom. And when we first started with Dexcom, back in December of 2013, the share and follow apps were not an option. They hadn't come out with the technology yet. So trust me when I say using the share and follow apps makes a big difference. I think it's really important to talk to the person you're following or sharing with get comfortable with how you want everybody to use the system. Even if you're following your young child. These are great conversations to have, what numbers will you text, how long we will need to call that sort of thing. That way the whole system gives everyone real peace of mind. I'll tell you what I absolutely love about Dexcom share, and that's helping Vinnie with any big issues using the data from the whole day and night, not just one moment, internet connectivity is required to access separate Dexcom follow up to learn more, go to Diabetes, Connections comm and click on the Dexcom logo.

All right, so Benny is home. As I am taping this episode. He's been home for just two days. Now we grabbed him up from the airport here in Charlotte and hugged him, I did not want to let him go. It was so nice to see him. So just real quick, if you aren't familiar, then he is 16. He's been going to a non diabetes, sleepaway camp for a month since he was nine years old. And it is with this camp, that he just went to Israel. And he was gone for a little bit more than a month. So how did we do it? How did we let him go with a non diabetes crew of people overseas for all that time, I'm going to do an episode hopefully with Benny soon I want to get his take on this. But I'll just give you an overview basically, of what we planned and how it went.

So the main thing to know is that Benny has been doing this for a long time when he goes to this camp. As I said, one month since he was nine years old, we do not use share, we don't use Dexcom, I am not a part of his day to day diabetes care. So I think that's the first big thing to know. And also the first big thing that went into really making sure that he knew what he was doing. He's proved time and time again, that he could do this. It's never perfect, I should probably have led with that. We don't expect perfect blood glucose lines and numbers when he's at camp. That's not part of our expectation, which I think helps a lot. And I am used to not really knowing what's going on for an entire month. Now certainly we check in with the medical staff, and especially when he was younger, we would have phone calls. And we did a lot of prep.

And we did a lot of prep here. So we made sure that the staff knew what was going on that he had diabetes, that he will be that he will be a little bit more help probably in certain situations that they had to make sure to store things correctly, not just the insulin, but storing all of the extra diabetes supplies. You don't want dex comms and pump and sets. You know, when you're schlepping across the Negev  desert, you really don't want those in your backpack. So where would we keep them that they would stay cool, you know, that kind of thing.

We decided to set up several different profiles in his pump, he uses the Tandem x two with control IQ, which was frankly a very big help on this trip. But we set up a few different profiles, the regular profile, a 15%, less insulin profile, any 30% less insulin profile, and we named them that 15% less 30% less, make it really easy for him to adjust as he got there because there were some times when they were incredibly active, you know, lots of hiking, lots of moving around lots of heat. We decided in advance, you know, had a lot of conversations about this that a staff member would follow is Dexcom. I will debrief Benny more about how this actually went. But my understanding is that the counselor who is known for years followed his numbers but only had the urgent low alert on his phone. So you know, he wasn't getting beeps all day long. And that seems to have worked out very well. I also followed I wasn't quite sure that I wanted to like I said, I don't usually follow him when he's away for that month at camp.

But we decided in this circumstance, it would be a good idea. But I had to have a plan. So Benny and I talked about what do I do? Right? What am I supposed to do from North Carolina? If he's beeping in Tel Aviv? So we decided that if he was low for a certain amount of time, if he was high for a certain amount of time, I would text Benny. And if I didn't get an answer, then I had a system set up in place where Okay, I would call the counselor who was following him no answer. I would call the counselor and staff who's in Israel, no answer, I would call the staff in New York. And we would go through that I never had a moment during the month where I had to call anybody or text anybody. But Benny, and I only did that, and we'll talk about the episode that we do together. There were a couple of times where he was not low, but it was alerting urgent low for longer than I would have been happy with. So that's why, you know, when he's low for that amount of time, I texted him, he said, it's fine. We resolved it.

That's about it. I mean, what other prep did we do? The prep that we've been doing since he was two years old, you know, my philosophy is trying to get him as independent, as confident as I can with diabetes, although I gotta be honest with you, that has come back to bite me because I did not expect him to be this into 16. And I was, frankly, very worried all month, but he did great. He really did. It's a lot to shoulder. It's a lot to shoulder at any age with diabetes, right at any time. But this in particular was a big challenge for him. I'm really proud of him. And I can't wait to hear although if you know, Benny, if you've listened for a long time, I'm also kind of dreading hearing someone. Say, but we'll be honest with you, and we'll share it all. So hopefully, that'll happen in the next month. I'll have him on the show to talk about his trip. But he is home. He did really well. And he's excited to be sleeping in his own bed.

Alright, before I let you go, we are traveling a lot in the next couple of weeks, just some family stuff. And I'm going to be at a podcast conference going to Nashville for podcast movement. So I don't think we're going to have any schedule interruptions. I've got it planned out pretty well. But hey, you never know. Please join Diabetes Connections, the group to stay up to date when stuff happens. I post there first, so you will know what's going on. But I think we're smooth sailing in terms of shows. We are talking to the folks from afrezza and I've got an omnipod update lots of information about what's in front of the FDA right now. Man, I hope that stuff gets approved soon, but we shall see. And then we're going to be back to school here. In the end middle of August, middle of August for my daughter goes back to college end of August for Benny and COVID and delta variant permitting. I'm really hoping to get back to some in person activity on the local level on the national level. So fingers crossed, we shall see. thank you as always to my editor John Bukenas from audio editing solutions. Thank you so much for listening. I'll be back in a couple of days with in the news. Join me for the top stories in the diabetes community. Until then, be kind to yourself.


Benny  28:00

Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged

Apr 20, 2021

This month, Don Muchow became the first person to run from Disneyland in California all the way to Disney World in Florida. It's a pretty amazing story when you consider that when Don was diagnosed with type 1 back in 1972 they told him that exercise was too dangerous. He wasn't even allowed to take part in his school's gym class!

Don shares how he made the turn to ultramarathons and beyond and what led him to make this incredible coast to coast journey. He had to contend with COVID delays along the way and got a terrific surprise when he arrived in Orlando. Plus.. what's next? He's already thinking about another incredible goal.

Learn more about Don here

In our Innovations segment, a seven day pump inset? And

some of our favorites have a little fun with a donut demonstration.

Stacey mentioned a new link for Dexcom and Medicare this week. Find that here. 

This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

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

Join the Diabetes Connections Facebook Group!

Sign up for our newsletter here


Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!

Get the App and listen to Diabetes Connections wherever you go!

Click here for iPhone      Click here for Android

Episode Transcription below



Stacey Simms  0:00

Diabetes Connections is brought to you by Dario Health. Manage your blood glucose levels increase your possibilities by Gvoke Hypopen the first premixed auto injector for very low blood sugar and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.


Announcer  0:22

This is Diabetes Connections with Stacey Simms.


Stacey Simms  0:27

This week Don Muchow just finished an incredible run from California's Disneyland all the way across the country to Disney World in Florida. diagnosed with type one as a child, Don wasn’t an athlete in his early 40s. He decided to try working out but then he got some bad news. His eyes were in trouble.


Don Muchow  0:47

It was like a punch in the gut to get that laser retinopathy treatment after I had made the decision to be healthy. And I made myself a promise that if I could just have a do over, I will do it over and I just kind of not looked back since then.


Stacey Simms  1:06

He’s definitely not done. He’s 59 and he has yet another big goal. I'm so excited to share his story

in our innovations segment, a seven day pump inset and some of our favorites. have a little fun with a doughnut demonstration. 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. You know we aim to educate and inspire about diabetes with a focus on people who use insulin. If you are new welcome. My son was diagnosed with type one back in 2006. Right before he turned to my husband lives with type two diabetes. I don't have any type of diabetes. I spent my career in broadcasting and that is how you get the podcast.

My guest this week. Oh my goodness is Don Muchow. He made national news last week when he finished a coast-to-coast run. He calls himself a type one diabetic extreme ultra runner and Iron Man boy is he ever I wanted to read you a couple of highlights from Don's website. So here's what he did before the accomplishment we're going to talk about today in 2019, who ran across Texas he holds the fastest known time record for doing that. 2018 he completed relay Iowa which is 339 miles in 2018. Sioux City to Dubuque first ever solo finisher of the longest us relay first ever T one D finisher 2017 capital to coast race 223 miles, Austin, Texas to the Gulf of Mexico first ever to Indy solo finisher, and on and on and on, I will link up Dan's website over at Diabetes and in the show notes, and do yourself a favor because that wasn't even a quarter of the list of stuff that he has accomplished.

And as you heard, he was not always an athlete. His story is even more amazing. When you find out that when Don was diagnosed in 1972, he was told no exercise too dangerous with type one, not even gym class, he was not allowed to take gym class, I will let Don tell you how he overcame that type of thinking to become the incredible athlete that he is now and he has great advice for those of us who want to be more active but are not ever going to run across Texas, let alone across the country. And that is coming up in just a moment.

But first Diabetes Connections is brought to you by Dario. Bottom line you need a plan of action with diabetes we have been very lucky that Benny’s endo has helped us with that, and that he understands the plan has to change as Benny gets older you want that kind of support. So take your diabetes management to the next level with Dario health. Their published Studies demonstrate high impact results for active users like improved in range percentage within three months reduction of A1C within three months and a 58% decrease in occurrences of severe hypoglycemic events, try Dario’s diabetes success plan and make a difference in your diabetes management. Go to my forward slash Diabetes Connections for more proven results and for information about the plan.

Don, thank you so much for making some time with me. I really appreciate you coming on.


Don Muchow  4:26

Thank you very much. I'm happy to be here.


Stacey Simms  4:28

How are you feeling this morning?


Don Muchow  4:29

Oh, hungry and tired. Oh


Stacey Simms  4:33

my goodness. You know, I'm not sure where to begin because there's so much to your story. But I guess let's start with my biggest question. And I always have this for people who are ultra athletes and do these incredible incredible feats. Can you tell us why you would do something like this? When did the idea enter your brain that this was a thing you wanted to do?


Don Muchow  4:55

We started thinking about the run about three years ago. And our primary objective was to get the word out to other type ones who are living with the disease. That while exercise can be justifiably scary, because low blood sugars can lead to seizures, and consciousness, even death, the long term complications from avoiding it entirely as I had done for the first 30 or so years, since my diagnosis are really pretty awful, I wouldn't compare it to the remote possibility of a trip to the ER for incredibly low blood sugar. And it's a snake in the room that you have to face. You can't ignore it, and you can't freak out about it.


Stacey Simms  5:42

You said we and our there what Tell me about your team. Before we go any further.


Don Muchow  5:47

I often tell people somewhat jokingly that I just do the running. And my wife and crew chief Leslie does everything else. That's actually pretty close to true. I started calling her mission control. Once we got started, we got closer to the Space Coast.


Stacey Simms  6:01

That's great with a run like this. And well, I want to talk about, you know, other feats that you have done. And you already mentioned, you went so long without regular exercise. There's so much to this story with this run. What did you think because you started this mean, COVID really threw you for a loop, we'll get into that. But when you were starting out what was the plan,


Don Muchow  6:22

we had spent probably about a year getting the route laid out so that it was safe enough to do, we were conscious of the fact that some people might want to do that same route again. And the last thing we wanted was for someone to die trying. When we started thinking about sort of putting feet on the ground, we went out and scouted the route in the car and made sure that I was comfortable with a train and with the route that I would be running. And we still run into obstacles, but it sort of helped us get our mind around the idea of what it would be like to run across the country. Wow.


Stacey Simms  6:58

What kind of things do you look for when you're scouting it out? Is it roads? Is it towns to be able to drive on?


Don Muchow  7:05

You're right on all three of those. We wanted a route that I could run that the van could drive as well. Wouldn't be much use, especially with type one, if I ran 100 miles of trail in Arizona, and there's no way to find. So we wanted a route with wide shoulders, relatively low traffic that the van to drive most of when we were in metropolitan areas that had bike trails. That was the one exception where we just kind of let me run on the trails because they had always pop out to CBS or gas station or something like that.


Stacey Simms  7:39

And why Disney to Disney was that geographic? Are you a fan?


Don Muchow  7:43

I am a fan. My wife and I are both big fans. Disney has been credited for saying something about how If you can dream it, you can do it. And that seemed like a sort of an anthemic statement, but really the the actual route from Disney to Disney was a bit of a happy accident. We originally planned to run from basically from LA to the Space Coast. And a friend of mine said, Oh, well, so you're running from Disneyland or Disney World. And I you know, I didn't have that idea. But that is brilliant. We decided to switch it up just a little bit to do the Disney Disney piece inside the transcontinental run.


Stacey Simms  8:18

Very cool. Oh, that's great. So you started out I remember when you put your feet on the ground and got going. And at that time COVID was not really a thought. When did you realize that you were going to have to make some changes


Don Muchow  8:31

that occurred to me in I think it was about end of the second week of March of 2020. When we were making a restock stop, and big spring, Texas, and we stopped at Costco and they were out of water and out of practically everything else we needed. And we began to get Inklings that it was going to be impossible to resupply the van and we were looking at lockdowns in my hometown. And we thought about, okay, well can we make it to Dallas. And if we did, you know, there will be facing an empty refrigerator. So we decided to kind of be planful about how we were going to sort of pause things and pick it up when it got safer to do so. We had to pause on March 22 or 24th. I don't remember exactly what we picked up again on September 24. ran for about a month and had to pause again because the numbers east of Texarkana were looking bad. And then we finally resumed the last third of the run and on March 2 of 2021 and made it to the coast.


Stacey Simms  9:40

Wow. And pardon my ignorance here when you're marking an event like this or a feat like this. Is it days, hours just miles done? Are there differences in how you market and how if somebody's officially marking it


Don Muchow  9:52

mentally I'd look forward to the next big town. Whatever comes actually the next town of any sort. You Usually what that means is, you know, gas stations, lodging, that sort of thing. And when you're out there in the middle of nowhere, that takes on a special significance. In terms of documenting the run, we originally set out to document it more thoroughly when we thought that there would be records that we might bump up against. When we found out that on this particular route that no one had actually done Disney the Disney before we relaxed a little bit, but still kept marking our progress, we have a live GPS tracker that kept track of where I was, every moment, I have two GPS watches that have my workouts recorded. And we also have the recommendation of an organization called fastest known time, timestamp selfies next to unique landmarks. So in terms of marking our progress, very, very hard to cheat on a route like that if you have to be at a certain place at a certain time, and the only way you can get there is to run. So we documented our progress. using those tools. I


Stacey Simms  11:03

guess what I also meant was in terms of the time break that you had to take because of COVID do you count just the time running then for your you know, the way you clocked it,


Don Muchow  11:13

we did taught up the time total time we spent running believe between the two Disney's It was 88 days, and it was 90 coast to coast records organizations, especially fastest known time, care about the entire time it took you especially if there's no starting gun, that's typically where people like fastest, sometimes calm pick up. It's elapsed time. So if you're visiting the bathroom, you're still on the clock. If your technique picking the lunch break, you're on the clock, we realize that while this might be the fastest known time from Disney to Disney, since it's the first, it'll be a record that's easy to break for anyone that serious about it. It really will only take them about three months to do it at my pace, and many people are faster than I am. So we take comfort in the fact that we drew some attention to type one and exercise. And that this was a bit of a bit of a media event because it was the first Yeah, definitely helped us get the word out.


Stacey Simms  12:10

And I don't mean to take anything away from it. I'm just trying to figure out so do you have to count it on February to April? Or do you just count the time running? I guess would you have to count the COVID break?


Right back to Don answering that question. But first Diabetes Connections is brought to you by Gvoke Hypopen  and our endo always told us if you use insulin, you need to have emergency glucagon on hand as well. Full blood sugars are one thing we're usually able to treat those with fast acting glucose tabs or juice very very low blood sugar can be very frightening. Which is why I'm glad there's a different option for emergency glucagon it's Gvoke Hypopen. Gvoke Hypopen is pre mixed and ready to use with no visible needle. 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 and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma visit g vo glucagon comm slash risk. Now back to Don. And he's talking about how the timing of this amazing run is recorded.


Don Muchow  13:21

Personally, I count the whole time. It is what it is.


Stacey Simms  13:24

I have a few more questions about the run itself. But I want to go back and talk to you about you mentioned the 30 years you spent not really exercising, it's hard to believe but when you were diagnosed, you were told it was too dangerous. Is that really a factor said tell us about that.


Don Muchow  13:41

I was diagnosed in 1972. And people who are considerably younger than me may not realize that glucose meters weren't invented or weren't publicly available until the early 1980s. My first glucometer was this massive brick shaped thing that I got, I think it was either 1982 1983 prior to that, really the only way of telling what your blood sugar was not what it is. But what it was, was with a urine test and all that really told you as past history. It was justifiable given the circumstances, that if there was no way other than a trip to a hospital to have a glucose test done, that if you couldn't tell how low your blood sugar was, and you were feeling awful and faint, and you know, on the verge of passing out that maybe it wasn't so good to do things that cause a drop in blood sugar problem was that, you know, after 30 years, glucose meters had been around for a while at that point. And I didn't change the advice I was following. So that's on me. But I think a lot of people even with glucose meters are justifiably scared that if they can't stay on top of a severe drop in their blood sugar that maybe this is not for me to do. We face challenges during these long runs. And because I'm type one, like a lot of you out there, you know I gotta face the same challenges and Many of them aren't easy, but I just keep thinking about the turn, I almost took down the road to being visually impaired and having circulatory problems. And I'm just so glad that I went ahead and face those risks. Wow.


Stacey Simms  15:15

Do you remember what it was that made you think I've got to move forward with exercise? I've got to change this. Yes, please, please tell me what you answer that the first thing you did wasn't a marathon.


Don Muchow  15:27

Not a marathon. It was in 2004. I had gone to see my retina specialist who had been monitoring proliferative retinopathy and my left eye. And it had come to the point where he recommended a laser retinopathy treatment, I think those are deprecated. These days, I think they use an anti inflammatory injection now. But back then the recommended treatment was laser treatment of the blood vessels in the eye that were leaking. And it left me with a blind spot. And I asked my retina specialist at the time, well, what does the future look like for me? And he basically said, Well, I'll have more blind spots if you don't do anything. And I had already made a decision that year, that after finding out was short of breath going up the stairs, that I wanted to be healthy, signed up for 5k turkey trot, and it was like a punch in the gut. To get that laser retinopathy treatment. After I had made the decision to be healthy. I made myself a promise that if I could just have a do over, I will do it over. And I'm just kind of not looked back since then. I actually have a little bit of a concern that for many years that once I got to the point where I finished a run across the US that I would turn around and go Okay, now watch, and and not run anymore. But I've taken up swimming. So hopefully that'll help.


Stacey Simms  16:51

And I'm trying to do the quick math, you're done. But how old? Were you in 2004?


Don Muchow  16:55

I think I was in my early 40s. I don't know the exact age, I think it was 42. But I'm not sure about that.


Stacey Simms  17:02

I only asked because you didn't change your mind when you were 22. Right, you didn't start exercising at a super young age. I think 42 is still very young. But it's not, you know, you're not a kid, if you're making decisions a little bit later in life. And the results are phenomenal. I mean, I just can't believe that,


Don Muchow  17:18

I actually think it was something of an advantage to start once I had a gray beard because I have lower expectations of myself. And I think as you push the distance, it's good to remember that not everything in life is achieved by going all out. I progressed slowly to longer and longer distances, probably around 2011, I had gotten used to running marathons and I realized that wasn't getting any faster. There was an ultra, I think it was a 50k in Fort Worth that came up on the radar. And I thought to myself, well, that's only five miles longer than a marathon. Let's try it. I did find it. There were only 400 people in that race that signed up. I think it was like 25,000 or something and signed up for the marathon, but only 400 for the ultra. And it was kind of a nice feeling to realize that, you know, the bulk of the work was behind me. And really now it was just seeing how far I could go. And I began to realize that, you know, if I sort of run my own pace, which is relatively slow, that pushing the distance was a more interesting challenge to me than trying to run faster and risk injury.


Stacey Simms  18:27

By the way, as a mom, I have to say, is that a Dexcom? Beep You good? We need to take care of any.


Don Muchow  18:33

We're good. I have lunch just a little while ago. So it's probably complaining about that.


Stacey Simms  18:39

I'm sorry to be if that's a rude thing to say.


Unknown Speaker  18:41

No, no, no, no, it's we're all tribe.


Stacey Simms  18:45

Thank you. So let's talk. I have some questions from my listeners. But let me ask you a couple more Disney questions. There's this great video of you finishing at Disney World. What was that like? And did you know that they knew you were coming and we're going to be celebrating like that?


Don Muchow  19:00

I knew absolutely nothing about it. We actually were talking just before at our last aid stop before we ran up to the Magic Kingdom about what would happen when we got there. We had thought okay, well, you know, we don't want to serve the Disney guys, we, you know, we realized that's private property, not officially part of the run because we had made a rule for ourselves that we would not run on private property. And when we got to the contemporary zero security guard said, Oh, are you the runner? And my first thought was, oh, guy, we're gonna get escorted off the property and they knew we were coming. And I said, Yeah, I'm the runner. And he said, Okay, well, hang tight. We got some friends waiting for you at the gate, ran over to the gate. And there were probably two or 300 Disney cast members waiting, all cheering. There were people lining the run up to the gate. And when we got there, most of aliquot the president of Walt Disney World presented me with a custom Mickey Mouse cat that said Disneyland The Disney World and escorted me into the park and said, have fun, do what you want to do, we'll pay for it. Wow. And I had an ice cream cone. And I wrote, it's a small world. And I had 50 more miles to go. So I went back and finish running. But it was the most magical time in the world. I just can't thank those guys enough. That was this awesome surprise party.


Stacey Simms  20:20

Do you know who told them? I mean, we


Don Muchow  20:22

all knew your guy, some sneaky person, I don't know. Actually, I actually have many, many months ago at contacted Disney media relations to see if anyone had run from Disneyland Disney World. And then they kind of went radio silent for a while. I suspect that what happened was that they waited for a while to see if it looked like it was going to finish. And then when it looked like it was actually going to happen. They're like, Okay, this is something noteworthy, and let's be there, and let's make his dreams come true. It was amazing. Finish the second finish line on the coast and Indialantic was almost as awesome because I really mostly expected my bio dad and his wife to be there, my brother and his wife. And you know, we'd all take some selfies and celebrate the fact that we got there. And there was a bit of a crowd and make the deputy mayor of Indialantic was there and had swag and other things. If somebody brought me a Red Bull. And I needed that. So it was it was pretty awesome. To have the two finish lines was kind of a bonus.


Stacey Simms  21:26

And just to be clear, when you said after Disney World you had 15 miles to go. Is that the same day that you did this? Yes,


Don Muchow  21:33

yes. The same day. Our plan was to stop in Kissimmee. Right at the turn to 192, which has toward the coast. I think we finished that day at 31 miles. You know, originally, when we didn't think there was going to be much of a fuss at Disney, we were hoping to do more like 3436, something like that. But we actually got in about 50k that day, and I was pretty happy about that.


Stacey Simms  21:57

The next question from my facebook group is about how did you manage blood sugar along the way, I know there must have been lots of ups and downs and things like that. But can you give any advice especially for the athletes who are listening in just on you know how you manage such a, an endurance feat?


Don Muchow  22:15

A couple of things. One is that it's important to be aware that while cardio can make you insulin sensitive, pushing it to the point where stress becomes a factor, the stress hormones can actually reverse that effect a little bit and make you a little more insulin resistant. I like to tell people that that's your body pumping you full of hormones and energy so you can run away from the cheetah. So that's an effect to be aware of my wife, Leslie, who managed all the food, made sure I got enough calories every day did a good job of watching my sugars on Dexcom follow. So generally speaking, when I got to the van, she knew what kind of fuel I needed and had it ready. In terms of using the settings on my T slim Tandem pump, I had to run it in sleep mode most of the time, because I was fairly insulin sensitive during the day and unless blisters or heat were bothering me, the biggest challenge was keeping my sugar up. I found that even in exercise mode, it was those teeny little too much. So I would say if you're going to run 100 milers, 200 miles, that sort of thing. Think about sleep mode, and not just exercise mode. That was something we had to do.


Stacey Simms  23:32

The same person wants to know how many pairs of shoes you went through.


Don Muchow  23:37

If you count just the ones that I wore out, it would be seven, I had a custom pair of shoes equipped with velcro all the way around the top and sand Gators. Same with the ones I use in the Mojave that I put put on for the beach. So that would be the eighth pair. So eight pairs of shoes, including the ones for the beach.


Stacey Simms  23:59

Oh my gosh. And if you could briefly and I will I will get you out of 1030 I promise. Just a couple more quick No worries, we


Don Muchow  24:06

can run a minute or two. Okay. Okay, NOT HAVE NOT HAVE NOT a half hour


Stacey Simms  24:09

Oh, no, no, no, no. Um, another question here is what did your training schedule look like? How do you train for something like this,


Don Muchow  24:17

um, I have a hilly 50k route that I typically do training runs on. I borrowed it from some cycling friends of mine who wanted a route with a lot of hills in it. And I typically try to go out and run that in every kind of weather that I could. During training, I would take I would take the rest day in between training days, but every once in a while I would run three or four days in a row, you know, do the same 50k route. Generally speaking, I didn't train above a 50k distance because I didn't expect to do more than 35 miles a day on the transcon I'm for Texas. We train a little bit longer per day. And for Iowa, we were training like 15 miles a day. But there's just no way for me that I could keep that kind of keep up a distance beyond 35 miles a day for 100 days.


Stacey Simms  25:15

When you're doing something like this, do you try to eat the same stuff all the time? Do you? Are you able to bury things? How does that work for you,


Don Muchow  25:23

um, I tend to gravitate towards some things that I liked. We also paid a lot of attention to trying to get things into me that had protein so that my muscles could rebuild a little bit better overnight. So we ate a lot of hummus, a lot of yogurt, chicken salad, that sort of thing. I got to a point where I didn't want hummus. Yeah, we ran out. We ran out, we ran out a chicken salad before I hated it.


Unknown Speaker  25:54



Don Muchow  25:57

with I'll see hydrated attempted to taste kind of pasty to me. But we would start putting those little mandarin orange cups that you can get at the grocery store, we would put those into yogurt to make it a little a little wetter. And it was a great fuel source. I mean, it's protein, fat, a little bit of sugar. So we I had a lot of that. If I needed carbs, we you know we'd throw in a Oreo or another butter or something like that. But we really paid attention to trying to get the calories and to me. I went through about probably 4000 5000 calories a day. Wow, if any less than that I was losing weight.


Stacey Simms  26:39

Did you did you have to treat lows along the way a lot of them or were you able to kind of manage by what you're eating. And with the sleep mode, as you said,


Don Muchow  26:49

I'm most mostly we managed by eating in sleep mode. We didn't run into a lot of lows on this run. And by that I don't mean to suggest that we had a lot of highs. On the days that were upwards of 35 miles. I tended to have more persistent highs until I went to sleep. And then of course my sugar's dropped very rapidly at that point, we had had previously had a run in with a severe low back in 2019. When I ran across Texas, there was a section between Kermit and Odessa that was very stressful to me. And my sugars had run high the whole day as a 41 mile stretch. And I basically kind of burned up my glycogen was under fueling because my sugar was running high from stress. And then that night when I went to sleep, my sugar dropped to 20. And for anyone here who's not from the US, that's probably one millimolar something very close to that, and, and was wavering in and out of consciousness. And my wife had a glucagon rescue kit that she used on me and I God knows how many carbs for my sugar, what came up. We learned to be careful about that and pay a lot of attention to whether the highs were due to over fueling or stress. And if it was stress, we treated that very differently than we did. You know, overeating. Stress, we typically found that dosing Just a little. And actually taking on food even though my sugar was high, was the best way to get my body to sort of calm down. Otherwise, I would just run high until I fell asleep and then I dropped like a rock.


Stacey Simms  28:38

I'm laughing with this question, because we debated in the group. But this question came up. Ask him what he's going to do next. I do have another?


Don Muchow  28:50

That's a good question. Um, I have been, I've had my eye on solo swim around keywest. That's not as amazing as it sounds from a type one perspective. My good friend Karen Lewin was actually the second type one to solo swim around keywest. I don't remember the name of the first one. So but I would be joining a club of people I'd be very happy to be a member of that's a 12 and a half mile swim. During the COVID pause, I switched to swim training because I needed to do something to break up the run training a little bit it was getting monotonous without knowing when I started again. Yeah. So I've got that swimming on my mind to do after this. But at the same time, I think I need to take some time off, recover. Just relax and sort of let my body sort of recalibrate to what normal life is like.


Stacey Simms  29:46

And I have to ask you mentioned they said Disney World. Come on in and do whatever you want. It's on us. He had an ice cream cone and you did small world, small world on why


Don Muchow  29:59

I have some real Very pleasant memories, from my childhood of riding that ride. It's always been there. And it's quiet. And one of the things that I found on the out on the run was that I would get something a friend of mine called it sympathetic nervous system overload, basically being two or three feet from traffic. for hours on end, I got to the point where I was kind of jumping at loud noises. So we really loved It's a small world. And that was one of the reasons we chose that. And it was our favorite ride anyway, so


Stacey Simms  30:38

I love it. Hey, before I let you go, any advice for people listening who are you know, they're running five K's or they're maybe just starting exercise with type one. And, you know, not planning to do what you've done. But a little nervous, but a little excited about exercise. You know, what do you tell people like that.


Don Muchow  30:59

Um, if you have a bad day, it's just a bad day. Don't kick yourself for mistakes. Don't kick yourself for things that don't go the way you expect, um, look at it as a chance to learn something. Even bad blood sugar Day is a chance to alter your plans, change something in the way that you manage your sugars during exercise. But above all, don't give up. I said


Stacey Simms  31:23

that was my last question. But something else just occurred to me, Don, have you ever gone back to the doctor, or anybody from kind of your previous life?


Don Muchow  31:32

I have. And things have been stable so far, we're going to kind of thoroughly check things out to make sure nothing's changed after the run. But we'll see how it goes.


Stacey Simms  31:42

Yeah, but they've got to be so excited to see what you've done.


Don Muchow  31:46

My endocrinologist is pretty excited. I'm hoping to see him here in about a month or so. And we'll check in with each other and see what we can tell from the numbers. Well, Don, thank


Stacey Simms  31:59

you so much for spending so much time with me. I really appreciate you coming on. Congratulations. And I got to tell you, I think what you should do next is is rest stop and put your feet up for a little while. But I know that's not going to happen. But thanks for being here.


Don Muchow  32:11

That sounds like a great idea. I'm happy to be here. And thank you so much for your time.


Unknown Speaker  32:20

You're listening to Diabetes Connections with Stacey Simms.


Stacey Simms  32:26

More information about Don in the show notes or Diabetes linked up to all of his amazing accomplishments. I'm still a little speechless. What a thing to do just to think of doing these incredible goals and getting them done. I know that people like Don will say, well, it's just a matter of training, and then you put one foot in front of the other. But my goodness, it's pretty amazing stuff. Innovations coming up in just a moment. We're gonna talk about what looks like a pretty big move from Medtronic in terms of longer where pump in sets.

But first Diabetes Connections is brought to you by Dexcom. And I get a lot of questions about Dexcom coverage for people on Medicare. You know, why not? It's not as though you stopped needing a CGM, the minute you turn 65. The good news is that the Dexcom G6 continuous glucose monitoring system is covered for Medicare for patients who meet the coverage criteria. If you have either type one or type two diabetes, and intensively managed insulin, you may be covered. To find out more about what that means. And if you qualify, check out backslash g six dash Medicare, you're going to want to talk to your doctor and you may even be able to get your Dexcom supplies at the pharmacy saving time and money. Learn more again that link I'll put this in the show notes too. It's backslash g six dash Medicare.


Innovations this week, one medical story and one donut story. Let's do the medical one first, interesting news from Medtronic, they have launched a new line of what's been called insulin infusion hardware. They've launched this in Europe, that basically doubles the time you can wear it so you know, if you were an insulin pump, you know, as you listen, you have the inset on your body. It's the way a tube pump will connect to the Omni pod has this too. It's just a little different cuz it's kind of hidden in the mechanism. But they all have this way that you insert a needle the needle comes out and the catalyst is under the skin with the adhesive and the connector part above the skin. I used to describe it looking like a tiny nicotine patch with a bump on it. They last about three days. You're supposed to change them every two to three days to avoid infection and scarring and clogging and that stuff, but Medtronic says that they have one that will last seven days.

And we talked about this when I spoke to Medtronic Sean Salmon back in oh I want to say October of last year was the fall of last year. He mentioned this. He said that the tubing set is what he called it would go from two to three days to seven days. And he said the way they were doing that I'll link up the episodes you can listen again, is that it has to do with the way that they filter insulin. Through the inset. He says that the preservatives in insulin are what causes the site reactions and the clogging and that kind of thing. And they found a way, you know, obviously, it's proprietary didn't go into too much detail. But they found a way to work around that. This is really interesting. I'm surprised this didn't make a bigger splash. This is a huge deal. If it works as well as we would hope to be able to where your pump on your body for longer without scarring or issues or that kind of thing. So European friends, if you're using it, you hear about it, talk to your endo about it, let us know how it goes. And we will wait for more information on the Medtronic seven day inset.

And the other story I wanted to bring you in innovations is the I don't know if it's a medical innovation, but it sure could be helpful that fabulous people at TCOYD take control of your diabetes released a video that many of you sent to me and it was just fantastic. I wanted to share it, it is how to eat three donuts and stay in range. And this is Dr. Jeremy Pettis, Dr. Steve Edelman, and they basically have a demonstration. But it's really a kind of comparison of how they would each do it. And they show you they eat three donuts they take you through, they're using a Dexcom to kind of show the results. It is a Afrezza the inhaled insulin, kind of versus timing of traditional insulin, I won't spoil the whole thing. It's fun to watch, I think they do an incredible job as always, of breaking down kind of complex thoughts and making them user friendly, I'll call it and they have such a great sense of humor, I really, really enjoy their stuff. So if you haven't ever watched any TCOYD videos, they have a ton of them. And their conferences are always a really good time too. So I will link that up in the show notes. But I would imagine you could Google how to eat three donuts and stay in range. Probably it'll pop up pretty easily.

Before I let you go, we did have our quarterly endocrinology visit. I always thought about putting it off because there's really nothing going on. Right now we're kind of in a groove or just re entering some parts of life. Knock on wood is you're listening this my whole family is vaccinated. Benny is two weeks past his I think I'll be past two weeks past my last one when this episode goes live. Yeah, it will be. And Benny has really re entered more of the real world very recently, as I've mentioned before he got a job. He's back with the wrestling team. He's not yet going to school. He's staying virtual, but he's back on the high school team. And you know, we've had some blood sugar issues as you would expect whenever you're going back to a sport after a long time not but he's managing them really well. So that I only share the endo appointment because he of course, we've known this guy for 14 plus years. He's taking his family to Disney World for the first time. And that's later this year. And that's what we spent mostly we've been talking about.


You know, my tips and tricks for Disney World, we'd have that episode last week, but his kids don't have type one. So it wasn't that relevant anything to have to listen to the podcast episode. And I realized I haven't been to Disney, you know, since COVID. Certainly. And I know that there have been some changes. So I'm fascinated to see that apparently, Fastpass plus has been eliminated during COVID, which was like my lifeblood when I go there, you know, I get this well in advance, listen to how excited I'm sounding just talking about it. But I get him in advance and we refresh 600 times a day and get all the rights we want. I mean, it's really, there's a science to it a little bit of madness to it, too. But it sounds like I'm gonna have to relearn everything. Because it sounds like they're gonna make a lot of changes when they you know, they really start opening up more, although disney world has been open really for months and months and months. But you know, when they start letting the bigger crowds back in, so that was fun. I love our endo. I feel really fortunate that we have the relationship with Him that we do. And the visits are now me kind of sitting in the corner. You know, me I stay, I can't stay quiet. But I do very little. It's really just a conversation between him and Benny and I feel really fortunate about that.

Alright, classic episode coming up later this week. As always, thank you to my editor, John Bukenas, from audio editing solutions. Thank you very much for listening. Hey, do me a favor, share the show. If you enjoy it. You think this is good information. If it's valuable or helpful to you in any way. Please tell somebody else in the diabetes community about it. Word of mouth is the best way to spread the word about podcasts and I really appreciate that. All right, I'll see you back here in a couple of days. Until then, be kind to yourself.


Benny  39:35

Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged.


Apr 1, 2021

Sebastien Sasseville has an incredible track record of athletic accomplishments. He's climbed Mt Everest, finished six Ironman races and completed the brutal Sahara ultramarathon. In 2014 Sebastien ran across Canada - the equivalent of 170 marathon in nine months - to raise awareness for diabetes. He was diagnosed with type 1 as a young adult.

These days, Sasseville is a motivational speaker and author and  late last year he teamed up with Tandem Diabetes as a brand ambassador.

This interview was taped in the summer of 2015 at the Friends for Life Conference.

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

Join the Diabetes Connections Facebook Group!

Sign up for our newsletter here


Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!

Get the App and listen to Diabetes Connections wherever you go!

Click here for iPhone      Click here for Android

1 2 3 4 Next »