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.
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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 connections.com. 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 connections.com 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 connections.com and click on the Gvoke Logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma visit Gvoke glucagon comm slash risk.
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.
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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 connections.com. 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 connections.com 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.
Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrong avenged
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.
Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
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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?
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 connections.com 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 dario.com 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.
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 connections.com 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 connections.com 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 connections.com 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.
Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged
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.
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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 connections.com and click on the gvoke logo gvoke shouldn't be used in patients with pheochromocytoma or insulinoma visit gvoke glucagon.com slash risk.
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 daario.com 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 connections.com 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 connections.com 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.
Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged
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.
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.
Get the App and listen to Diabetes Connections wherever you go!
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.
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 connections.com 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 Dario.com 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 connections.com 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 connections.com 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 dexcom.com 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 dexcom.com 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.
Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged.
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.
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The Legend of Sam Fuld was born during his days in the minor leagues and when he played for the Oakland A's and in Tampa Bay. It involved his wild dives and seeming willingness to do whatever it took to make the play. Earlier this year, Fuld became the General Manager of the Philadelphia Phillies.
Sam Fuld was diagnosed with type 1 at age ten and first spoke to Stacey in 2016. In this classic episode he shares his story, what he did as a player to manage his blood sugar, and a lot about the camp he's still organizing today.
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Stacey Simms 0:00
This episode of Diabetes Connections is brought to you by inside the breakthrough. A new history of science podcast full of Did you know stuff like does snake oil actually contain snakes? If you're intrigued by science get excited about the process of discovery and one of the best stories that your next dinner party inside the breakthrough is the show for you.
This is Diabetes Connections with Stacey Simms.
Stacey Simms 0:31
Welcome to a classic episode of the show where we take a look back at stories of connection that you may have missed the first time around. I'm your host, Stacey Simms, and of course, the emphasis is still on educating and inspiring people with diabetes with a focus on those who use insulin.
This time around, you're going to hear from the legendary Major League Baseball player Sam Fuld diagnosed with type one at age 10. I first spoke to Sam in 2016, when he was playing with the Oakland A's. He retired as a player in 2017. And he was just recently named the general manager of the Philadelphia Phillies.
If you're not familiar with Sam fold, I say legendary because and you'll hear us talk about this. There was a time when he was known for these incredible plays in the outfield where he would just throw his body into walls, he would make these dives that to me, the mom looked painful. And I linked up one of the many videos made by fans, you can check that out in Diabetes Connections, the group on Facebook, but Sam is a lot more than the legend. He also has a terrific program, a coaching program for kids with type one. I will let him tell you more about that. But I will link up the information in the show notes. And I will talk about that after the interview as well. Because you know of course in 2021, it looks a little bit different.
Please remember this podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
This episode of Diabetes Connections is supported by inside the breakthrough a new history of science podcast, the 2021 is the 100th anniversary as most of you know of the discovery of insulin. It is arguably the biggest scientific discovery in Canadian history. This series examines that moment and many others through the lens of Canadian researchers trying to find what's next for the fight against diabetes. The host, Dan Riskin, has a great following you may know him from many years of hosting primetime Discovery Channel shows. He's also really funny. He's appeared on a lot of late night shows and he wrote the book, Mother Nature is trying to kill you. We've got a link to inside the breakthrough over at Diabetes connections.com. And of course you can find it wherever you listen to podcasts.
When I'm doing these classic episodes, I have reaching back to the people featured in them for a comment and update, you know, to let them know that we're bringing the interviews back out and see if there's anything they can add and Sam Fuld was kind enough to correspond with me. And I did send to him congratulations on the amazing new job as General Manager for the Phillies. And I asked him if he could give us a diabetes update. So here's what he said, quote,
“Hey, Stacy, I am really enjoying my new role. I am trying to learn and achieve as much as possible as we enter spring training. I'm surrounded by a lot of experienced co workers and have been leaning on them extensively throughout the past few weeks. Time is precious these days. So I'm really grateful for my Dexcom G6. Next up is a transition away from insulin pens, and toward an insulin pump. I'm really excited about experimenting with one of the hybrid closed loop systems.”
So that's the update from Sam, as you'll hear the interview, he was not using an insulin pump. And of course I told him he can just jump in Diabetes Connections, the Facebook group and learn more from all of you. So let's see if he pops up.
All right, here's my interview from February 2016. All right, my guest today is Sam fold. He was diagnosed type 1 diabetes at age 10. after he'd already made up his mind to play professional baseball, as you likely know, he got there playing first with the Cubs than at Tampa Bay. And now with the Oakland A's. It was while in Tampa that Sam started his weekend camp for kids with diabetes, teaching them as he's learned that diabetes shouldn't hold you back. As a mom of a kid who plays baseball has type 1 diabetes. I'm really excited to talk to you, Sam fold. Welcome to Diabetes Connections.
Sam Fuld 4:31
Hey, thanks for having me.
Stacey Simms 4:32
Can we start kind of by going back before you were even diagnosed? You were really into baseball is what I've read. Is that right?
Sam Fuld 4:41
Oh, yeah, yeah, baseball was. I really can't remember a time where I didn't love baseball. I was I was probably four or five years old when I realized like, oh, man, this is my favorite sport. I mean, I played every sport imaginable grown up but there was something about baseball that I just really loved and I think it was better Added to then the other sports was okay, the other ones. But for some reason I was better in baseball I think that probably helped contribute to my passion for but I think it worked hand in hand. I was good at it because I loved it. And I loved it even more because I was good at.
Stacey Simms 5:14
So not too many years later than you found out you had type 1 diabetes, what happened? Do you remember your diagnosis?
Sam Fuld 5:21
vaguely. I mean, luckily, it wasn't anything too scary. I mean, it was essentially an accumulation of a couple months of symptoms. And there's no type 1 diabetes in my family at all. So my parents didn't really know what was going on. They just something was going on. And, you know, I showed all the classic symptoms of going to the bathroom all the time and being thirsty and losing weight. You know, I was 10 years old and lost 10 pounds over the summer. So my parents didn't take them too long to figure out something was wrong. So I think I remember going into the doctor and you know, it was about a 480, which obviously is pretty high, but certainly not really high. When you when you compare it to some of the other numbers that diagnosed diabetics get. So you know, it wasn't anything too scary, luckily, and we all knew right away what what the deal was,
Stacey Simms 6:09
what was the deal? I mean, how did it change your life? And this was, I'll call it a generation ago, let's say your diagnosis, right, like 20 years ago. So how did it change your life? This wasn't a time when people were automatically going on an insulin pump and getting a Dexcom
Sam Fuld 6:23
No, not at all. No, I don't even think pumps were on the market. At that point. It was certainly not an option. And yeah, I just remember well, so I was at an age where I could be pretty independent with it. So I remember my parents helped me out with with my injections for the first few months after being diagnosed. And but shortly thereafter, I was really independent. And I you know, I had the old old school syringe and the vials and my meter. You know, I think it probably was like a 25 second countdown. So which is an eternity nowadays, but it wasn't too bad. I mean, it wasn't like reading the color of a urine sample. Right?
Stacey Simms 6:59
Nobody was sharpening the needles.
Sam Fuld 7:02
Yeah, so somewhere in between, like ancient diabetes and current diabetes treatment. I was so naive. I didn't know what I had. No, you know, I think my uncle had a cat with diabetes. And that was about all I knew about. So I really, in some ways, was naive and a little ignorant. And I just thought, okay, God, I figured it was kind of like having asthma. Like I had asthma at the time. And I was like, Okay, I guess it's another thing to deal with. And I guess that naivete kind of helped me in some ways.
Stacey Simms 7:29
Yeah. Well, it's good to not know what you can't do. Did you ever think you couldn't play baseball?
Sam Fuld 7:34
No, no, I was lucky. I mean, the the medical staff was really positive and supportive, and my family and friends are really supportive. So it really never crossed my mind. It would hold me back, I think I was lucky to be surrounded by some really supportive people. And I, you know, I think it wasn't until months or years after I was diagnosed, that I heard this stigma that maybe diabetes could hold you back, or that that was even a thing. So I think, again, I was lucky that the first thing that popped in my mind was okay, nothing's gonna change, you're gonna have to see me a big pain in the butt potentially. But, you know, ultimately, it's not gonna hold me back.
Stacey Simms 8:11
And you mentioned you had asthma. Do you don't have
Sam Fuld 8:13
to do that? No, I was kind of like an exercise induced as it was. I sort of grew out of it. My dad is as one goes. Yeah, I don't know. It's, um, I would put the time I was like, using an inhaler occasionally. But no, luckily, that's a non issue at this point.
Stacey Simms 8:28
Yeah, I was gonna say that's a lot to deal with. But you've mentioned that you had some great inspiration shortly after your diagnosis, because there have been other professional ballplayers with type one.
Sam Fuld 8:40
Yeah, there have not too many. But you know, I think in back then, when I was diagnosed, it wasn't like, you could just hop online and Google like type one diabetic baseball players, you know, kind of word of mouth. So I know about rod Santos, the Chicago Cubs. Great. And then I had a family friend, at the time was a pitching coach for the Boston Red Sox. And he knew of Bill gullickson, who was a longtime Major League pitcher. And so when I was about type one himself, and when I was about 12, you know, year and a half after being diagnosed, my family friends set up this sort of meeting on the field at Fenway Park, when when Bill was in town pitching for the Tigers, and I got to meet him and you know, it was like a two minute conversation and but that really kind of went a long way I was I knew he existed, but to really meet meet him face to face, it kind of gave me an extra bit of motivation.
Stacey Simms 9:29
I think that's so important. Because as you said, no one sat you down a diagnosis and said, well, son, your dreams of baseball are done. This is not going to happen for you. And a lot of kids in in my son's generation, don't worry about that either. They're not really told anymore. This is going to hold you back. But being you know, kind of hearing that and then seeing and meeting somebody who's done that is a big difference is that one of the reasons I would assume that talking to Bill gullickson really cemented it for you why you now talk to these kids.
Sam Fuld 10:00
No doubt, no doubt. I mean, I remember that moment. You know, it was 22 years ago, 2122 years ago, but I remember it like it was yesterday. And I definitely impacts the way I, you know, I go out of my way to meet other kids with type one. So I think yeah, that that moment was so invigorating to me, and I'll never forget it. Part of the inspiration for the camp that I do and and all the interaction I have with with young type ones.
Stacey Simms 10:26
Well, let's talk about the camp in a little bit. But I do want to focus on I mean, the way you play baseball, that crazy first season in 2011, when you had all of those, the jumping and the diving and the YouTube videos, Was that fun for you? Instead of crazy here, because I'd also like to talk to your mom, I was worried about you getting hurt. so silly.
Unknown Speaker 10:50
Sam Fuld 10:52
I can't speak for my mom. She was probably willing to deal with like the whiplash that I got on all those guys. I think she got a pretty good kick out of that whole run to know I loved it. It was an amazing, amazing part of my career in life. Really, it was, it happens so quickly, you know, I was kind of, I just come over to the rays from the Cubs in a trade. And, you know, I had a little bit of big time with the cubs. But this was like my first opportunity that first time making the team out of spring training, you know, but even at that point on opening day, I was like, essentially, the last man on the team, you know, it's like the fifth outfielder and didn't envision really playing a whole lot. I was just kind of thrilled to be on the team. And Manny Ramirez retired. And that kind of thrust me into like the starting role. And I just kind of ran with it. And the next few weeks, were just like this crazy, wild ride. And I guess I'm lucky I had the perspective, I guess I know enough perspective to try to enjoy the moment as crazy as it was. There were moments I was able to like, sit back and just go oh my gosh, life is crazy right now. But this is fine.
Stacey Simms 11:59
It's great. And I if as you listen, if you haven't heard about this, I will link up the legend of Sam fold and some of the videos that came out of that season. A lot of fun. But tell me about your your routine, if you could, I had a lot of questions from people who wanted to know as a professional athlete, how do you do it with type 1 diabetes? How do you take care of yourself? You don't if you don't mind getting a little personal here to kind of share maybe a game day routine or how you take care of at all? Sure.
Sam Fuld 12:27
Well, I mean, I'm sort of an old school diabetic I use my Lantus and novolog pens, and I don't use a CGM, nor pump obviously. And that's just worked for me. I've been I've been using these pins last 10 years or so. And I really, I find that they work well for me. So I do my lantis at night, once once a night, I wish I could draw up like a typical game day for you unfortunately, like they're not none of them are typical there every day is different. And, you know, we play seven o'clock games, we play one o'clock games, we play three o'clock games, you know, we play in New York on East Coast time we play in Oakland, obviously, we play you know, we're in different time zones throughout the year. So really, if, if there's a typical day, it's that I'm changing something. And you know, we're exposed to different foods in the clubhouse, you know, we get fed really well in a clubhouse, but there aren't exactly nutrition, nutritional labels on everything that we eat, you know, it's a lot of like, catered food that that's brought in, and you just, it's a lot of it is a guessing game. So that being said, You know, I do try my best to, you know, maintain some sort of routine and as best as I can. So if it's a night game, which I'd say about two out of three games that we play or night games, I'll just try to have like a, you know, oatmeal is like my go to in the morning. I love oatmeal, maybe a little fruit in the morning. And then sort of snack is needed until lunchtime. And I'll I love going to like a turkey sandwich with some fruit, maybe some vegetables and hummus, something like that pregame and then play at seven and then we eat after. I mean, we haven't crazy when you're diabetic or not. We are on a crazy schedule. You know, your launch is like five o'clock and your dinner is 11 o'clock at night.
Stacey Simms 14:20
My son would think that sounds fantastic. You definitely have dinner at lunch or dinner at five and then dinner lunch again. Yeah,
Sam Fuld 14:28
that's great. Until the next day, you have to wake up at like seven eight o'clock game and then you're back to like normal life. So yes.
Stacey Simms 14:35
Do you just test a lot more? Do you check a lot more?
Sam Fuld 14:37
Yeah, I tend to I mean yeah, whenever Yeah, I think I mean I test a lot regardless, but I particularly during games and yeah, just during the season, I'm checking quite a bit. So you know, typical game, I'll probably check at least three times during the game. I think. On average, I'm up about eight checks per day.
Stacey Simms 14:56
And this is totally nosy so tell me to buzz off is the no pump thing. Comfort thing, or is it also like your, you know, your diving and jumping and running around?
Sam Fuld 15:03
Yeah, I think it's a little of both. You know, I experimented one a couple years ago in an offseason and shoot every kid I talked to loves them, you know, and I hear nothing but great things about them. So I thought I'd give it a shot. I owed it to myself to try it. And I, I definitely found some benefit to it. But I also just didn't like that foreign body attached to me. And I was worried that if I were to wear one during a game, then it would become a bit of a hazard. So yeah, and I think if I were struggling more with my treatment, currently, I would be more compelled to change, but I just don't really comfortable the way.
Stacey Simms 15:39
One of the things I wanted to ask you about. And this is kind of silly, but it's from my son's perspective, I wanted to ask you during his baseball games, and he's 11 years old, we can see because he wears a CGM, that when he's at bat, or when there's a big play, you can watch the adrenaline spike. It's pretty wild. And I'm curious if you have dealt with that kind of thing. And how you deal with perhaps post game highs that are adrenaline highs?
Sam Fuld 16:08
Yeah. Oh, it's really one of the bigger challenges. I mean, especially I, I've had a lot of games where you know, I won't, I won't start, and I'll be on the bench. And all of a sudden, in the eighth inning, I'm called upon a pinch hit. And like, so you go from kind of very relaxed mindset, you know, you try to anticipate these changes being made. So your adrenaline gets going around the sixth seventh inning, you try to get your body loose in case you are called upon. And then but then you just can't predict that sort of that huge adrenaline spike and that blood sugar spike, when you're called upon to pinch it or even pinch Ron, or whatever it may be. And so I mean, I'll be right where I want to be in the low mid one hundreds. And then I got like, 20 minutes later, I mean, 300. And it's unbelievable. Can you just can't it's really tough to control. But yeah, you did you do the best you can. And it's one of those things that just in some ways, it's difficult to combat. And but I'd rather be a little on the high side and on the low side, obviously. So and then, you know, after the games are crazy, because then you get that letdown, essentially, you know, I'll eat an entire meal, a big meal after a game and not even need any novolog just because I've got all that adrenaline wearing off. And then you get those crashes. And you need carbs. Just to keep you aboveboard.
Stacey Simms 17:28
Yeah, it's been an interesting learning experience for us over the years of baseball as he's gone from Little kid playing to bigger kid playing and, you know, the different pressures and things. So he's like, you know, we're all walking science experiments. To some extent, I see
Unknown Speaker 17:42
a lot of data
Stacey Simms 17:44
in your data. And you know, you're the scientist as well. So it's pretty crazy. Let's talk about your camp. This is such a great program. This is the fourth year, you have a camp for kids who play sports, all different kinds of sports. And it's with one of the Tampa hospitals. Tell me about how this came about and what you like about it?
Sam Fuld 18:02
Well, so came about my first year at Tampa, I just got a invitation to come check out the University of South Florida's new Diabetes Center, they just built the center. And they were kind enough to extend an invitation for me to just come check it out and meet the meet the people associated with the, with the center. So I did so I think on an off day that we had, and in Tampa and met all the folks there and and you know, over the last few years, I kind of had it in the back of my mind, this idea of holding a camp diabetes campus sports camp, you know, obviously, what was familiar with the diabetes camps out there. And I thought maybe making it unique to sports, obviously, exercise goes, goes such a long way in regulating type one. So I thought this would be a good idea as I brought up the idea with the USF folks and they loved it. And so within months, we had this first annual sample USF diabetes sports camp. And it was wildly popular. It's like 100 kids, the first year and we did it. And I went out and kind of went on the recruiting trail. You know, it's amazing. I was using like Facebook and LinkedIn, and you name it to find these five coaches, because I wanted all the coaches there to be type one athletes themselves so that all those sports that we offer are coached by type ones themselves who have played at a pretty high level college or even professional. So that part was really fun. I felt like I was recruiting my own little team. And we've, that team has stayed together. Yeah, I think we haven't. We've expanded the number of sports we offer. We have more and more coaches every year. But those that took part in the first year have stayed with us because they know how inspiring the whole weekend is. So
Stacey Simms 19:46
did you look for coaches that were familiar with type one, or did you look for great people to take part and say, Hey, we can teach you the type one stuff?
Sam Fuld 19:52
No, I want to coaches that have type one so all workers have type one. Oh, wow. Yeah. I'd say a couple that we have our are parents of type ones. But other Otherwise, I'd say out of the 15 to 20 coaches that we have, you know, all but two or three are type ones themselves. So I mean, we have a basketball player who played overseas, he's type one we have a great tennis pro Jen king who played, she played in several years opens, and she's type one. And Bill gullickson, ironically, has come
Stacey Simms 20:21
Sam Fuld 20:23
Yeah, so we have an amazing, amazing staff. And we help we partner with the Florida diabetes camps who have been around for a long time and hold camps throughout the state of Florida. And they've been a tremendous help to. So it's been a huge team effort. And it's just been a really, really, it's one of my favorite weekend's of the year and we've grown and I was worried that when I left Tampa to go to Oakland that my camp following would diminish, but it's actually increased. So I think this thing is here to stay.
Stacey Simms 20:51
It's a pretty unique program to have all of those coaches with type one and all of the different sports, do you find that the kids are coming to maybe learn about their sport, but I would guess that there's a lot more going on than just how to take care of your adrenaline level? After Yeah,
Sam Fuld 21:08
yeah, it's everything. You know, I think there's something empowering about just being around so many other type ones. And then you combine that with just the amount of fun that you have playing the sports that you love, you know, the kids get to choose their three favorite sports, and then they play that those three sports all day. And so you have that amount of fun, and you share those stories with one another. And you learn from the coaches and you this, I think there's just like an intangible feeling you get by being around so many other diabetics, and I that's personally that's one of my favorite parts of the campus is being around learning from others. But just that feeling of comfort, you know, you can't really can't put a price on that.
Stacey Simms 21:50
I have a few questions, if you don't mind that I got from Facebook, i Diabetes Connections, because people are always interested in just different ways that you've handled certain situations. So I'm gonna throw a couple at you. But if these are not things you want to answer, you know, just let me know, they're not crazy, but just let me know. Okay. All right, ready? So Bill wanted to know, he said, I'm interested in how the college recruiting process was impacted by type 1 diabetes. Were coaches reluctant to recruit or was it a non factor? And I'll jump in and add that you played for Stanford? And to that question, then do you disclose that you have diabetes when you're going through shifts? I mean, that's kind of an interesting issue. So I'll let you answer the question.
Sam Fuld 22:30
Yeah, I was lucky enough. As far as I know, I don't think it was a concern. I mean, I was there recruiting a whole scene 15 years ago, or whenever it was, when I was being recruited, it was a little different than it was now. And by no means was I, you know, withholding any information. I was certainly open with my type one. And as far as I know, it was a non issue. It may have been, and I just didn't know about it. But I mean, Stanford recruited me and as far as I know, they they had zero experience with type one ballplayers. So you know, it wasn't like they had this great example of another type one player who was a perfectly great player with with no issues. I was a new experience for them. But it didn't prevent them from recruiting me. So I, again, there was one instance where when I was at Stanford, and I met with a Baltimore Orioles Scout, and this is my senior year in college, and for those of you don't know, in college baseball, you're eligible to be drafted by a major league organization after your junior year. And so I was drafted by the Cubs after my junior year and went back to school my senior year. But in talking with this Oreo Scout, he was saying, Yeah, we wanted to draft him last year. But you know, we were worried about the diabetes. That kind of threw me off a little bit. And that's kind of my one story of somebody like just outright telling me Yeah, we were had some reservations, because you're type one, but otherwise, I am free of any crazy stories.
Stacey Simms 23:54
That's good. That's weird that he would tell you why not just your mouth.
Sam Fuld 23:59
But I'm glad he did. Yeah.
Stacey Simms 24:02
Exactly. It does happen, obviously. And then the other questions, we had a bunch of questions about pumps, which we're not going to ask, but you know, mostly, how do I keep it on my body when I'm sweating? And then how do you manage the delayed hypo reaction to exercising and you mentioned, you're usually eating and not treating? Is that what you usually do?
Sam Fuld 24:20
Yeah, like I said, I mean, it sometimes it means I eat a big meal and don't even give myself any novolog until a little bit later, or it's kind of as needed. Yeah, it's, I'll have like a big plate of pasta and not need a single unit. So, you know, I like anything. It's, it's a matter of regular checks. And, you know, it's, like I said, every day every night is different. You know, the amount of food, the amount of exercise, the stress level, everything is there's always the variables change every day. So the way to combat that is to check as often as you can.
Stacey Simms 24:54
Well, we're talking to you before the camp we're talking to you in the beginning of February here and This podcast will air in a couple of weeks. And when it does, it'll be just about time if not just past time for pitchers and catchers to report on what are you looking forward to this season?
Sam Fuld 25:10
Well, I think I'm, I'm excited for, you know, bounce back here, I think individually and team wise, we had a down year, we had some expectations last year, and we didn't meet them, and we just couldn't seem to catch a break. So I'm looking forward to maybe catching a couple breaks on the positive side and individually just looking to contribute and have a better year individually. And yeah, it's a it's a good group of guys. And I think we're gonna sneak up on some people. We We definitely, we had a frustrating year last year, but I think we're gonna be what will surprise
Stacey Simms 25:40
some people this year. Cool. And let me just end by asking you, we started by talking about you at age five or six, you know, getting into baseball, and being excited about it. What's it like when you now and that first game of the season, or maybe that first practice when you walk on the field? Is it still a little unreal? Or is this just another day of work?
Unknown Speaker 26:01
Sam Fuld 26:01
still a feeling of, wow, this is my job, I get to go out and play baseball. You know, there are definitely moments during the year where that wears off. Especially here in the years like last year. No, I think we remind we try to remind each other like, despite all the challenges that that playing presents, the stress and the travel and the expectations, I think we do remind each other we do a good job of saying Holy cow, we get to do this for a living. So this is never you know, that first day getting put on a uniform, be outside and you didn't sign a few hours, things like signing autographs and knowing that there are fans out there who are supporting you. It's a pretty cool moment, despite having this will be like my 13th year or 12th year in professional baseball so it doesn't get old.
Stacey Simms 26:49
Was there anything you wanted to mention anything about camp or anything else that I missed?
Sam Fuld 26:52
No, I think no, the camp obviously is near and dear to my heart. And the other event that I've got going on now is a partner with a nonprofit called slam diabetes who primarily old wiffle ball tournaments as fundraisers for for camps throughout the country. And so I partnered with them and we did a two was a lot of tournaments now in Tampa. And they're really cool. If you get a chance to check it out. It's slam T one D org. And we do some really cool tournaments. They do a bunch of the New England and have now expanded down to Florida partnering with me and we raise money for my camp so that we can keep our camp tuition really low and add to the many features that the camp provides. It's a really cool thing we've you know, last this last tournament we had in Tampa, we had 16 teams, so it's a big tournament we raised up to right around $60,000 so it's a pretty cool event. We had about 2020 big leaguers come out and play with us and it's pretty fun to see a major leaguer. You know, we had Josh Donaldson out MVP of the American League last year who's striking out against the 12 year old. So it's a pretty fun event. It's I definitely encourage you guys to check it out.
Stacey Simms 28:04
We will well Sam Fuld, thank you so much for joining me today. Really appreciate your time.
Sam Fuld 28:09
Thanks for having me. I appreciate it.
Unknown Speaker 28:16
You're listening to Diabetes Connections with Stacey Simms.
Stacey Simms 28:22
More information about Sam on the legend, the video at Diabetes connections.com. And, of course all about the camp as well. Quick note, it says on their website that the 2021 camp will be held virtually, and you never know what other celebrity tnd athletes will stop by. That's what it says on their website. So you can find out more at that link. I think this is fantastic. It's really too bad that everything's virtual right now. But it is a terrific way to connect. And as we've seen, listen to look on the bright side, you can connect with many more people who are available virtually, who may not have been able to travel to the camp. So that's one way to look at it.
Listening back to that interview just kind of made me nostalgic for the time when Benny played baseball. That was his big sport when he was younger elementary school and I think the first year into middle school maybe into seventh grade but i think i think sixth grade was his last year of baseball. I mean diabetes wise, I loved baseball, there was so much downtime, so easy to treat if he needed to. He got his Dexcom in fourth grade I'll never forget this is before share. He had his receiver in you know case and we would hang it from the wire is called wiring, you know what I mean? Looks like netting but the wiring at the dugout and we would hang it on that with a clip. So I could walk over and check it. You didn't get shared till the end of fifth grade. So that was a different story in a different time for the things you remember. And baseball was just a lot of fun. I mean, not even memories of diabetes, just all the good times and the great friends that he made and you know still talks about and hangs out with to this day.
Looking ahead next week. I am working on an episode that should be out next week. If not, it will be out shortly about COVID vaccine type one advocacy. We've been talking about this in the Facebook group, it is different in every state and many states are changing where they're tier type one, it's going up. It's coming sooner for many people in many places with the type one, but not everywhere. So if you are curious about this, we're going to talk about how to find the information where you live. And if you're not happy about it, what you can do to advocate for yourself or your family member, you know, and find out what's going on behind the scenes in terms of advocacy. So I'm really excited to bring that to you. And that should be here next week.
Thank you as always to my editor john, because from audio editing solutions, thank you so much for listening. I hope you're enjoying these classic episodes. I'm having so much fun for me them to you.
I'm Stacey Simms. I'll see you back here next week. Until then, be kind to yourself.
Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged
Eric Dutcher is one of the super athletes of the diabetes world. He even calls himself Chronic Superhuman on social media! But he spent years years thinking diabetes meant that he shouldn't be active, and he admits he got pretty low. Eric shares how he found his way to a brighter - and incredibly active - future.
He's now a big part of the Diabetes Sports Project and is training for an Ironman race later this year.
More in this episode on Spare a Rose - marking 8 years of saving lives around the world.
Get the App and listen to Diabetes Connections wherever you go!
Staying in the US Military ater a type 1 diabetes diagnosis isn't easy, but it can be done. Meet Jason Cyr. Diagnosed in 2011 while deployed in Africa, he was able to return to the Army and retire on his own terms a few years later. Jason is an élite cyclist and now a cycling coach.
Stacey mentions another veteran who was able to stay on active duty after a type 1 diabetes diagnosis. You can listen to our episode with Mark Thompson here.
In Tell Me Something Good diabetes month stuff, a big milestone for the college diabetes network and a new podcast about diabetes and mental health.
Get the App and listen to Diabetes Connections wherever you go!
Stacey Simms 0:00
Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes 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.
Stacey Simms 0:28
This week, we're celebrating Veterans Day by sharing the story of Jason Cyr. He was diagnosed with type one while serving in the US military deployed in Africa in 2011.
Jason Cyr 0:40
You know, I was like oh my gosh, this is like my career is on this trajectory to continue to serve whether it's special operations or just back to the regular army. I really enjoy this I started because I really love working with soldiers mentoring soldiers leading soldiers and I was like this is all over now. So now what am I gonna do?
Stacey Simms 0:56
Cyr was able to stay in the military. He shares that story what he's doing now and why I have a photo of him on a unicycle
In Tell me something good. Lots of Diabetes Awareness Month stuff and a big milestone for the college diabetes network.
Welcome to another week of the show. I am so glad to have you along. I am your host, Stacey Simms, and we aim to educate and inspire about type 1 diabetes by sharing stories of connection. My son was diagnosed with type one right before he turned two, we are getting close to his 14 year diversity. My husband lives with type two, I don't have diabetes, but I have a background in broadcasting and local radio and television news. And that is how you get the podcast.
It is of course diabetes Awareness Month. So there's lots of things you're seeing if you follow me on social media. I'm posting as I do every year, photos, stories of people in the Charlotte, North Carolina area where I live, who live with diabetes. And I also and this is the first time I'm doing this in diabetes Awareness Month, I'm running a contest, I'm running two contests, and they have started as this episode first airs, if you're listening to it, the week of veterans week of 2020, the contests are going so I'm not gonna spend too much time on them here because they are social media only one of them is in the Facebook group Diabetes Connections, the group you have to be in the group to take part and the other one is on my Instagram and Instagram for me is only Stacey Simms, I do not have a separate one for the show. It's enough. So you get pictures of me walking my dog and pictures of my husband cooking and diabetes awareness stuff and podcast stuff all in one Instagram feed.
I want to give a brief shout out and thank you to the companies that are helping out with the Instagram contest. This is a multi company prize giveaway, we've got a lot of people taking part, it's possible that I may add to this list, and I will certainly revisit it. But big thank you to the folks at NRG bytes. Pump Peelz RX Sugar, Dia-Be-Tees, Wherever EuGO, T1D3DGear and GTTHL Apparel and to the world's worst diabetes mom, the book we're giving that away to I will list all of those fabulous people with links to the companies in the show notes Just go to Diabetes connections.com. But the best way to find out more about them is to head on over to Instagram and take part in that contest. big thank you to everybody for taking part in that.
Kind of a subdued Diabetes Awareness Month, I think for many people with the election in the US and just a lot of diabetes burnout out there. So I hope the contest is a bright spot. But I'm also doing a panel that is this Friday, as you listen on November 13. And that is with my friends at One Drop. We've put together a great panel, we're going to be talking about community, how to get more involved, what we get from community and some surprises there. And we are talking to people with type one, type two and parents of children with type one. And that's going to be a lot of fun that is live on the Diabetes Connections Facebook page, and One Drop will be amplifying it as well.
And speaking of One Drop Diabetes Connections is brought to you by One Drop and I spoke to the people there. And I've always been really impressed at how much they get diabetes. It just makes sense. Their CEO Jeff was diagnosed with type one as an adult. One Drop is for people with diabetes by people with diabetes. The people at One Drop work relentlessly to remove all barriers between you and the care you need. Get 24 seven coaching support in your app and unlimited supplies delivered. No prescriptions or insurance required. Their beautiful sleek meter fits in perfectly with the rest of your life. They'll also send you test strips with a strip plan that actually makes sense for how much you actually check. One Drop diabetes care delivered. learn more, go to Diabetes connections.com and click on the One Drop logo.
My guest this week is a member of a very small club. Not only was Jason Cyr diagnosed with type 1 diabetes while he was in the military, he was allowed to stay in. And you may recall, I met Mark Thompson last year I spoke to him last November. And until this interview, Mark was the only other veteran I've ever talked to personally, who was able to stay in the military. After a diagnosis Mark story is slightly different. His career path after is different as well. I will link up more about mark in the show notes for this episode, you can go back and listen to the prior episode, and learn more as well. And those show notes and the transcript as always, at Diabetes connections.com.
Now the military policy in the US is pretty straightforward for enlisting, you cannot enlist in the military with a chronic condition like type one. But there is just just a bit more wiggle room if you're diagnosed while you're already in. So Jason Cyr was diagnosed while deployed in Africa. And he thought as you can understand that his symptoms were you know, from the weather or the altitude or all of the extra activity, he always does big runner and a big biker. He's going to tell that story and what he's been doing since he retired from the military in 2016. Jason, thank you so much for joining me, your story is pretty remarkable. I'm excited to talk to you.
Jason Cyr 6:16
Oh, well, thanks for having me, Stacy. I really appreciate I don't know if it's a remarkable story. But I appreciate you saying that. I'm flattered.
Stacey Simms 6:22
You're the second person that I've interviewed or even have known with all the hundreds of maybe thousands of people that we've been lucky to meet the diabetes community who has been able to stay in the military after a type one diabetes diagnosis. So I'd say that's pretty remarkable. And I'd love let's just start right there. Can you tell me what happened where what was going on when you were diagnosed?
Jason Cyr 6:42
This was, oh, gosh, it was 2011. I was deployed to sock see the Special Operations Command Horn of Africa. And I was working in Kenya for that organization, basically, helping to do some work with with the Kenyan military. And we kind of set up well, that kind of we had set up an American style Ranger School there. And I was helping a lot of the officers and enlisted folks just make that organization and that school run more smoothly. I am a Ranger School graduate. My career started actually, in the 75th Ranger Regiment, specifically a third Ranger Battalion, spent most of my time at sea company. But so I was there. And we were, were doing some training. And because we were living in the Mount Kenya area of Kenya, it was that elevation. If I recall correctly, this is going back a few years now. I think it was about 11,000 feet or living that. And so I and I was running every day, I was probably running 10 miles a day or something like that, just because I didn't have my my bicycle there. And I was running with some Kenyans. And so I just kind of had some signs and symptoms, you know, the polydipsia polyuria weight loss, and I just sort of chalked it up to Hey, I'm eating different foods, and I'm living in at times in an austere environment and running every day. And like I said, at elevation, so I just kind of dismiss those things.
Stacey Simms 8:06
And I'm gonna just jump in polydipsia polyuria really thirsty really have to pay?
Jason Cyr 8:10
Yeah, exactly. just translate for me and drink. Yeah, sure. And drinking like a gallon of water that you know, cup. You know, I don't know. I betcha I was drinking a gallon of water a day. But I just sort of chalked it up to like, Oh, it's fine. I'm a special forces guy. This is normal. You know, we're supposed to be able to just sort of, I guess suck it up. Anyway, I did have a medic with me on the deployment of Special Forces medic at 18 Delta. And he multiple times said, Hey, you should there's something wrong with you. You've got to go get checked out. So I think he had reached out to the our battalion surgeon and the surgeon had had come down to to actually go and climb Mount Kenya with me. Like on a weekend, a four day weekend we had off. And so anyway, we went climbing mountain and after that, he said, Hey, you got to go get looked at so I had a meeting with I think that defense attache at the at the embassy in Nairobi A few days later. And so I said, Yeah, when I go down there, I've got to meet with him. I've got to brief him on some stuff that we're doing. And I'll go get checked.
So I go down to the hospital after the briefing. And I present with like a blood sugar of like 840 I think, a one C of like 14. So at that point, obviously we knew something was wrong. superfit guy didn't think it was type two, but I was thinking I can't be type one. I'm 36 years older, or whatever it was 37 maybe at the time, wow. That of course starts a cascade effect where they evacuate back to I think we're in Djibouti at that time, and then eventually on to launch to Germany, where, you know, I got some more testing, done some more formal testing done and they said, hey, you've got type 1 diabetes. So you know, after probably a 15 minute pity party, I said Well, I'm gonna have to own this. So I went from there. Yeah, I guess at that point, I went to Fort Belvoir and Walter Reed Medical Center and got some more things done, figured out and then I went into the what's called the ward Transition battalion where they basically start proceedings to, you know, put you out or medically retire or whatever out of the military.
And I guess long story short, I had some great officers that I worked for a two star, and at the time a full bird Colonel that that just said, Hey, you know, you can stay and we've just invested all this time and money in you. I was just about through grad school later on while I was there, and they just said, Hey, we know we're going to retain you. So you go to this medical board, and the board decides, hey, we're gonna put you out. But if you can provide overwhelming evidence that you can stay in and do it safely, and you're going to have these folks that are going to, I guess, you know, not deploy you or put you in an environment where you can make a bad decision if you're hypoglycemic, or something will let you stay in. And so, you know, I think at that point, I was probably at 17 years or something like that. So I really only had three years ago, and my company command was up, I was in a staff position. So there's probably little harm I could do if I had a had a low or something like that. And I think at that point, I had displayed that I you know, had run a marathon I was racing factor racing and a category one and, you know, elite level of still doing some like UCI races. And I think I had displayed that I owned the disease as well as you can, in that short amount of time. And the board made a decision to let me stay in 220. I actually ended up doing I think, 23 years all together. So I ended up staying, and probably six more years, and then retired.
Stacey Simms 11:26
All right. It's an incredible story. I have questions. You mentioned, when you were diagnosed, you had a 15 minute pity party. And I'm just curious. Now I'm assuming that's a little bit of an exaggeration. I'm not taking anything away. If it was 15 minutes and moved on. That's fantastic. It's amazing. But what what really went through your mind, because you had been, as you said, 1718 years in, you didn't know yet that you were going to stay. You didn't know yet that you'd be able to continue with marathons and bike riding and doing everything that you did, do you mind and I hate to get so personal. But just from my own experience, I had a little bit more than a 15 minute pity party when my son was diagnosed. I'm curious what really went through your mind at that moment?
Jason Cyr 12:06
Oh, well, you know, I think after 17 or 16, whatever it was probably 17 years of service, you're kind of like, Man, I've done all this stuff. I've served in all these great units. Why me? I've always been super fit. I think I just, you know, I was like, Oh my gosh, this is like my career is on this trajectory, to continue to serve. And you know, whether it's special operations, or just back to the regular army, I really enjoy this. I don't necessarily serve I mean, obviously, I serve because I love my country. But I serve because I really love working with soldiers, mentoring soldiers, leading soldiers. And I was like, this is all over now. So now what am I going to do? Because this has sort of been who I am and what I've done. In a nutshell that that is what it is. That said, I can't say that I wouldn't if my if my son is diagnosed with Type One Diabetes, I'm going to have a longer than 15 minute pity party, for sure. I can empathize with you. 100%. I think for me, it was just like, hey, let's just get on with it. Let's own this as much as we can.
Stacey Simms 13:02
That'd be just be the perspective of a parent versus family
Jason Cyr 13:05
Yeah. It's very different than me. Yeah. But yeah, I don't even Oh, gosh, I can't even imagine. I mean, I think it's difficult day to day. And I'm one of these people who probably there couldn't be a better person to get it. In my own opinion, because I'm just one of those people who constantly looks at my Dexcom. I'm constantly, you know, weighing what I shouldn't shouldn't put in my body. You know, how hard should I go? I'm constantly thinking about the dosages of insulin I'm taking. So I don't think it would be there's a better person to get it. But yeah, I mean, that's generally what went through my mind.
Stacey Simms 13:37
When you went back when you were clear to go back into what you were doing. I'm curious, what was your routine at the time? Because we're talking about what, seven or eight years ago you mentioned Dexcom? Did you have that then I think I read you were checking your blood sugar like 20 times a day at one point, you know, take us through the routine of that initial first year back in the service.
Right back to Jason answering that question. But first diabetes Connections is brought to you by Gvoke HypoPen, and almost everyone who takes insulin has experienced a low blood sugar and that can be scary. A very low blood sugar is really scary. That's where Gvoke HypoPen comes in. Gvoke is the first auto injector to treat very low blood sugar Gvoke hypo pen is pre mixed and ready to go with no visible needle. That means it's easy to use how easy you pull off the red cap and push the yellow end onto bear skin and hold it for five seconds. That's it. Find out more go to Diabetes connections.com and click on the Gvoke logo joke shouldn't be used in patients with pheochromocytoma or insulinoma visit gvoke glucagon comm slash risk. Now back to my conversation with Jason. He is talking about what it was like when he first went back into the army after being diagnosed.
Jason Cyr 14:58
I didn't have a CGM Immediately, and obviously, they didn't put me on a pump either. So I was, you know, manually doing this stuff, I was actually buying extra strips, you know, because I was testing like 15 or 20 times a day. And so the prescription that I had wouldn't, wasn't lasting that, you know, as long as it normally would. But part of the reason I was doing that is because I was also trying to figure out how to get back to racing at at least the highest level I could do. And at the time, I did have a USAC, or United States cycling Association, or USA cycling pro license. And so you know, as a pro, I was pretty mid pack fodder. But definitely fast enough that I was, you know, winning expert level races at Nationals, or at least getting on the podium. So I wanted to at least see if I could get back to that. And the way to do that, as far as I was concerned, is just collect data. And so my, my wife, who is a scientist helped me build this really wild looking Excel spreadsheet that had like linear regression on it. And I was just plotting points and figuring out, okay, if I go for 20 minutes at max effort, anaerobically, what happens to my blood sugar, and then if I go 40 minutes, what happens? And if I feed at 45 minutes, you know, what happens after that. And so I just was, I guess, in the course of training six days a week, I was just trying to figure out what happens, you know, if I have this much, you know, slow acting insulin on board, you know, what happens with that race effort. And then what happens if I have, you know, from working out or in a periodized stage, where I'm doing like six days of really hard training, and then taking a break? Is the insulin a lot more sensitive.
And, you know, I found out obviously, that it was, so just things like that I was just trying to figure it out. my saving grace really was that my wife, unbeknownst to me, wrote a letter to Phil Sutherland that at the time team type one, and he immediately invited me at the time I think we were Sanofi or Sena Fie team type one. So I was on that team, I think, for a year. And then I got on to the team Novo Nordisk elite team. And just being around type one athletes at training camp in Spain, or in California, we did, we did quite a few training camps over the, I think, five years I was with that team. That was a huge help, because it was just a depth and breadth of knowledge and institutional knowledge that I just didn't have. I didn't know any other type one, athletes, I just started asking those guys questions. And then I also had unfettered access to a an endocrinologist, who's who was on the team, and I just started firing off questions and trying to figure it out. And so the trajectory that I had for learning how to race and deal with diabetes and still maintain a 12, or 14 hour week training schedule was great. And I couldn't have done it. Or I mean, I could have done it, but it would have taken I take a lot longer to figure out those variables. So I think having access to those guys was just great.
Stacey Simms 17:55
When you got your Dexcom, having been someone who already kept their own spreadsheet, and pretty detailed ones, I'm curious what you've done with your data, I famously on the show, have the perspective of my son and I, we're really not big data, diabetes, people we are go by feel, you know, we do great, it's all good. But I love respect and marvel at people like you who really dial into it. So with that being said, when you got the Dexcom, and you opened up clarity, or you looked at these things, what was that like for you?
Jason Cyr 18:29
Oh, it was huge. It's even better now with the six. I mean, I started off with before, you know, went through the five transition to the six. And the six is just like it's almost overwhelming the data that that? Well, it is overwhelming, but it's just great. It's also really great to see the the amount of stuff that's available to you. And so yeah, I use the data all the time. It's great. When I'm racing, we just, we didn't have much of a race season this year. But I think I did five races, and three of them were enduro racing, which is the it's a mountain biking discipline that I focus on. And those races can last for four to six hours, seven hours, you're only racing stages. But you're you're riding from the end of a stage all the way back up the mountain to another stage to race back downhill with these chips on your bike where they they're collecting time. And so seeing the trends, whether it's going up or down or it's really good to see it helps immensely. And then I also look at that data after the race to see it because that racing discipline is very anaerobic and going full gas for the three this to seven minutes or eight minutes that the stage lasts. When you finish because your anaerobic, you know you're you're dumping glycogen in your blood, you're getting these huge spikes that you know your body has to test to deal with later on. And so knowing exactly how much insulin to take, after, say two stages and maintain a good blood glucose level is really important. And obviously you couldn't do that with just by finger sticks, trying to figure it out. So it just Yeah, the data that I get from that informs my decisions and racing, especially over a long day, or days leading up to it, I couldn't do without it. So I think the CGM is really important.
Stacey Simms 20:12
I must have sounded ridiculous to you, I promise we don't just wing it with my son,
Unknown Speaker 20:16
Jason Cyr 20:19
also get that I am a total geek. I mean, that's I think there's reasons to push me to cycling coaching, because I just love looking at heart rate data and power data and overlaying these things and figuring out the puzzle of how we make someone stronger and faster.
Stacey Simms 20:33
Yeah. And I'll tell you what podcast listeners are my listeners are super data people, which I feel bad sometimes that I'm their host, because people that listen to podcasts in general want more and more and more information. So sometimes I'm like, sorry, but you know, we do the best we can, and want to go back if I could, to some military questions. Because there are so many young people who were diagnosed with type one who unfortunately, cannot serve in the military. This has been their dream. And curious what your perspective is, do you think that will change? I know that there's they're looking at it. I mean, there was a study a year or two ago that they were doing at Fort Bragg, with people with type one trying to kind of see how more modern diabetes technology might help. What's your perspective on that?
Jason Cyr 21:16
Yeah, I think, and obviously, I'm not a physician, or a doctor in any way, or probably an expert, I'm probably an expert on my body and how it reacts, I think that maybe technology could fix the problem. That said, I make silly decisions. When I'm hypoglycemic, and soda, I think, to put a combat leader in a position where they have to make life and death decisions. And there's potential that you could be hypoglycemic in the moment, obviously, is detrimental. And that's just on face value. And I haven't looked at how the technology could change it. But I will say that it has made me much more aware of highs and lows just because of the alarms that are associated with a continuous glucose monitor. So yeah, I think it's possible. Yeah, for sure. But I would let you know, the experts make those decisions that said, I can empathize with someone who just really wants to be have a career in the military, because it's made me who I am. I mean, it does. Obviously, my military service doesn't define me as a person, but it is a huge part of my life. There's very few moments I will say that I did not enjoy in my 23 plus year career in the military. So yeah, I hope that we get to the point where that's technology fixes that or perhaps there's a cure someday, I certainly wouldn't enjoy that. Because I tell you what, the first thing I'm gonna do is eat a whole cheesecake.
Stacey Simms 22:39
When you return to the military, if your diagnosis what you do, what was your job? What were your duties? Um, I
Jason Cyr 22:45
think what was my first my, I think I was the, the Operations Officer for this critical infrastructure protection Battalion, which we started, we use a lot of 18 series, guys. 18 series guys are special forces, guys. And we modeled that program off of what the defense Threat Reduction agency does. And they typically use a, or at least in the past to have I'm not sure what they do now. They use a soft guy like a Seal or a Green Beret to do the targeting piece when we look at how we would defeat or take down like, say, a facility. And so I was I think I was an operations officer. And then I moved to the executive officer, the deputy commander of the that critical infrastructure protection Battalion, and I spent the rest of my career there, basically, because I was working for these two officers that wrote letters recommendation that keep me in the military and so that I finished my career out there. And you know, probably one of the reasons I did retire is I was never going to go and command a combat unit ever again. That was not going to happen. You know, I wanted to be obviously I joined the Ranger Regiment and then spent time as a special forces guys starting as an 18. Charlie, which is a special forces engineer. You know, I did those things because that's what I wanted to do.
Stacey Simms 23:55
You mentioned that now you're coaching your coaching other cyclists? Yeah, correct. How so? How is that going? And I'm struggling to think of how to ask this because you started doing that during this pandemic.
Jason Cyr 24:06
They I did and I have to say it's been it's been incredibly successful. The company is cycle strategies. We coach road cyclists, cyclocross, but we focus on you know, the mountain bike discipline, so enduro, downhill, cross country, mountain biking, and I thought, hey, because we're in the middle of a pandemic, this will give me some time to get my feet on the ground, figure out the business aspects, you know, subs, figure out the books, figure out how we're going to deliver the coaching process, and it's been busier than I ever thought maybe that's that is because of, of this. In the process of coaching. Most of it is online, I use an online platform called training peaks to coach my athletes, and I do do the other side of the business is the skills piece. And so I do do skills training with adults and kids, but we're wearing masks. I don't touch it. You know, we don't there's no contact. We just I'm really trying to do our best to stay six feet away in cycling is sort of a socially distance thing anyway. So
Stacey Simms 25:06
it's been amazing though, because cycling has been so popular. I mean, it's been more and more popular every year. But during the pandemic, we tried to get my son's bike repaired. And it was unbelievable. how busy everybody is there at a party. You know, everybody wants to bike ride right now.
Jason Cyr 25:21
Yeah, yeah, I know, our local bike shop has had a really difficult time, trying to come up with way logistically to come up with ways to find parts for folks and just keep the item. Yeah, so it's been great for the sport. I think it's Yeah, it's helped me with a few clients that have just decided, Hey, I'm going to take up cycling, I really enjoy this. Oh, I think I need a coach. And I'm getting an email. And yeah, it's, it's, it's been great. I love it.
Stacey Simms 25:46
What is your advice for people with type one who are reluctant to get active? Because it is a lot of work? And frankly, even with all the technology, there is still some fear, right? It's hard to do a two hour bike ride without going low. If you haven't done that already.
Jason Cyr 26:03
Yeah, my recommendation is, well, first off, I just think living a healthy lifestyle helps you control your blood sugar, much better. And isn't that the intent, obviously, we don't have a pancreas that functions, at least that part of the pancreas doesn't function properly, to provide insulin and the glucose back in the cells. And so exercising helps you a treat some of that out of your system to help to put it back in. It makes you more responsive to insulin. And again, I will full disclosure here, I'm not a physician at all. I'm not an endocrinologist. But that has been my experience. So yeah, that's the first point is it really helps me at least control my blood sugar by just exercising and being consistent about it. Second, it's, it's just a healthy thing to do. And the third thing I would add is that taking it slow. So you may start with 15 minutes of writing and see how your body responds to that. And then add another 15 minutes until you get to an hour something that would be my recommendation. And I just feel like it's a great way to live. Anytime I'm sedentary, I am now chasing numbers. But if I just stay active, generally active and I'm not saying I go out and you don't have to go out and train for two or three hours every day. That's nice. And I know folks that do do that. But I don't do that. I may go for a couple hour ride to three times a week. Otherwise, I'm just doing an hour and maybe a little bit of weightlifting or something in nowadays in the garage.
Stacey Simms 27:27
What do you still like after all this time about riding your bike about cycling?
Jason Cyr 27:32
Oh, yeah, that's a great question. I don't know I'm sure my wife would have. She would say I'm obsessed. I don't know. All things. two wheels. We have dirt bikes. We've got cyclocross bikes. I even got a unicycle this year, as a way to figure out how to work on some balance. I don't know I think for me, cycling creates an experience where I can think about the day I can decompress. I've always used cycling when I was in the military, especially command to decompress. So I would come home, I get on my bike for an hour, and I go just smash out some laps, and really get my heart rate up high a few times, do some intervals. And I would be completely decompress to come home and have dinner with the family and being a good husband and a good father. So for me, I think it's just a bit of an escape, perhaps the endorphins that are released in the process of of executing some physical activity. I'm not sure but I do know that I do a lot of thinking. When I'm while I'm writing,
Stacey Simms 28:27
how's the unicycling going?
Jason Cyr 28:29
Good. I took it took me a solid hour of falling before I figured it out. I put knee pads on and shin pads is pretty funny. The helmet everything. And I just went out there. I just started getting after it. But now I can ride all the way around town on it. Wow. Sure, my neighbors thought that I was
Stacey Simms 28:48
gonna say does anybody stop you? Or take Oh, yes.
Jason Cyr 28:50
Well, interesting enough. My neighbor lives right across the street. He's a really cool guy. He's probably in his maybe mid 50s or something like that here. This is all Jason Let me try that thing. And as I said, God, be careful this thing you'll get hurt. And he jumped right on it and wrote it right down the road massive. Oh, look at that. That's awesome. And he knew, you know, he, he had spent his his youth riding in them. But I didn't know that. So I thought it was great. I was amazed. That's awesome. That's fine.
Stacey Simms 29:16
Yeah, you just cycling isn't the kind of thing that you just jump on and go, that's somebody who had a little bit of experience?
Jason Cyr 29:21
No. And I've got a few kids that I coach, and they all ride unicycles. So I said, Well, hey, you know, if they're gonna do it, I've got to figure this out. So every time in between, like after races or before races, they're just riding around on the unicycle. And I have to say, what it really engages your core. I thought that was really cool. And then the second piece that you get out is this great building of motor skills, and motor schemata or proprioception that you're kind of building and so the balance that comes from that is great for cycling, especially the offer of disciplines.
Stacey Simms 29:52
So listen, I went all over the place. Was there anything you want to talk about that I didn't mention?
Jason Cyr 29:56
No, I would I would add that, you know, thank you so much for letting me You know, I guess, Share, share my story. I don't think it's remarkable. I'm flattered that you think it is. The last thing I would add is that service and the military and service to your country is one, it is just a great privilege to lead and serve one serve, but to lead and be given the great responsibility to lead men and women, I think is just it's a privilege, really, and I wouldn't have done anything else had I had a had an opportunity. I just I've really enjoyed my service to the military and just serve with all those people. Obviously, there's ups and downs. You know, I've lost friends along the way, you know, in Afghanistan and deployments, and just other places, training accidents, those kinds of things. But it's just been a great opportunity. And, and I enjoyed every bit of it.
Stacey Simms 30:42
Well, we can't say thank you enough for your service, and how much we appreciate everything that you've done. And thank you so much for coming on and sharing your story. And if you don't mind me asking, I would love to have a unicycle picture. Oh, sure. Next time you're on.
Jason Cyr 30:56
Absolutely. I've got your your number. I'll text you one.
Unknown Speaker 30:59
That'd be great. Thanks
Unknown Speaker 31:00
so much for joining me.
Jason Cyr 31:01
Thank you, Stacey. Thanks very much.
Unknown Speaker 31:09
You're listening to Diabetes Connections with Stacey Simms.
Stacey Simms 31:14
More information about Jason's story, he was written up quite a bit for bike riding with the Novo Nordisk folks, as he mentioned, I mentioned that unicycle shot, I will put that in the Facebook group as well. Many of you who gosh years ago used to follow my blog may recall that my kids elementary school had a jump rope club. And stay with me, there's a point here, the jump rope club was featured, we put them into the Big Blue test two years ago, which was a wonderful effort from the diabetes hands foundation to get people to exercise and check blood sugar. And it was a really great outreach efforts. So the jumper club was featured in that. But another elementary school where a lot of my friends kids went, had a unicycle club. And that always blew my mind. Because, first of all, who had the idea to start the unicycle club, and it was very popular, and they did just as much with those unicycles as my kids did with the jump ropes we had, like 40 kids, fourth and fifth graders zipping around on unicycles. It was bonkers, but good for you. Cornelius Elementary School in North Carolina, we salute you. Tell me something good coming up in just a moment. But first diabetes Connections is brought to you by Dexcom. And we started with Dexcom back in the olden days before share. Yeah, there were two years almost, I think we used it before share. Trust me when I say using share and follow apps has made a big difference. Then he and I now set parameters about when I'm going to call him or text him you know how long to wait, that kind of stuff. But it really helps us talk and worry about diabetes less. You know, if he's away on a trip or at a sleep over, it gives me peace of mind. It also helps I love this if I need to troubleshoot with him, because we can see what's been happening over the last 24 hours and not just at one moment. The alerts and alarms that we set also help us from keeping the highs from getting too high and help us jump on loads before there were a big issue. Internet connectivity is required to access the separate Dexcom follow app. To learn more, go to Diabetes connections.com and click on the Dexcom logo.
And tell me something good this week Happy Anniversary diaversary. Happy 10 years to the college diabetes network. I can't believe this organization is 10 years old. We have been following their progress from the beginning. The college diabetes network started when Christina Roth basically started a campus group by herself wanting peer support on college campuses. And then she expanded into a national nonprofit which only served the young adults it really was geared towards college kids. But as it grew, and Christina saw the need, it continued to expand and now includes information for high school students, college students, young professionals and people like me, parents and family who are trying to stay informed, stay calm, learn more about sending their students, their kids with T Wendy off to college. So congratulations to the college diabetes network with more than 224 chapters now on campuses across the country. They are just doing an incredible job. They have a bunch of celebrations going on this month. And Benny is he's a sophomore in high school. I'm trying not to get too far ahead of myself. I have learned with all these years with type one, you know, in my family, that while it's good to be prepared and think you know what's coming, you really don't know what each stage is going to bring with your child because every kid is different. So I've stayed away from college type one stuff as much as I can until we get just a little bit closer. another bit of good news this month. The diabetes psychologist podcast has launched and this is with Dr. Mark Heyman and I spoke to him earlier this year. And then kind of off the year we talked about his podcast and I'm thrilled that he took the dive It has done this, I will link it up in the show notes. There's just not enough in terms of resources right when it comes to mental health and diabetes. So kudos to him for launching this. He has launched it as a limited series. He has a bunch of episodes out, and we shall see if he continues, but I'm thrilled that he put these important episodes and good help out there.
And this last one isn't really a concrete Tell me something good, but it's just something I love. You know, every year, there are diabetes challenges on Instagram and Facebook, you know, social media stuff, I'm sure there's stuff happening on tik tok and snapchat that I will never say, but it's all about, you know, post every day, and they give you something to post. And if you're interested, I mean, we're almost halfway through the month. But there's still a long way to go. I'll link up a couple in the show notes. And I'm sure you've seen them on Instagram, but I, I love these. I don't participate anymore, because I have a lot of other stuff going on. And you know, it's Benny's type one. I mean, it's really not something I can take pictures of all day long anymore. I'm not taking care of him in the same way. But I love to see these posts. I don't care if you're posting twice in a month or every single day, your posts are seen. They matter. And they make me smile. They're not all happy posts. Certainly they're all good news posts. That's not what diabetes is all about. But it really is heartening to remember that this community is still the DRC it's the diabetes online community, and your voice matters, your pictures matter. So thanks for letting me take part a little bit in what's going on in your diabetes life. That way, if you haven't told me something good story, you can always reach out Stacy at Diabetes connections.com. And I regularly asked for submissions in the Facebook group, Diabetes Connections group.
A couple of reminders of things I've been telling you about in past episode First, the contests are going on right now I've got two contests this month, one on Instagram one on Facebook. So the Facebook one is only in the group. It's in our podcast group. But the Instagram one is on the Stacey Simms account, it's the only account I have over there. So definitely check those out. Again, links in the show notes, any app you're listening to will have the show notes. So you can always go back to Diabetes connections.com. And the second thing I want to make sure you know about is the ebook, Diabetes Connections extra. I'm giving this away for free. Yes, you do have to sign up for my newsletter. And if you already signed up for the newsletter, you can still sign up and get the book you will not get double the newsletter. Although, you know, would you really mind hearing from me more than once I know. But definitely sign up and get that ebook. I think it's really good for newer diagnosed families, for people who have maybe just started a CGM who have never really figured out what ketones are. And I think for veteran families, and really well educated people, let's face it, like yourself, probably who listened to this podcast every week. It's fantastic to give to the other people in your life, who may not really understand diabetes, because Diabetes Connections extra is full of conversations about the basic building blocks of diabetes management. And some people just learn better when they read a book, rather than sitting down with a grandma, or sitting down with your best friend who's interested and kind of explaining. And that's what I think it's really going to be good for. But
you tell me I'm interested to see what the reaction is to this. That is Diabetes Connections extra and we are giving it away for free, it will not be free forever. I'm going to put it on Amazon as an E book in a couple of weeks. Okay, thank you so much to my editor John Bukenas from audio editing solutions. And thank you so much for listening. It means the world to me that you're here week after week. I appreciate it so much. I'm Stacey Simms. I'll see you back here next week. Until then, be kind to yourself.
Unknown Speaker 38:38
Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged
Linda Franklin is one of the strongest people we know - and we mean that literally! She holds world records for power lifting and has ranked at an elite national level for cross fit. Linda was diagnosed with type 1 at age 26 and reveals she struggled with management until she found her community. You may know Linda from the amazing Facebook group, Type 1 Diabetic Athletes
In Tell Me Something Good, the dedication of a dad.
Innovations this week has an update on the longest wear CGM yet.
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Stacey Simms 0:00
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This is Diabetes Connections with Stacey Simms.
Stacey Simms 0:27
This week, Linda Franklin is a world record holder for powerlifting diagnosed with type one at age 26. She's in her early 60s and at an elite level, but she says she really struggled with management until she finally met somebody else with T1D, who shared her passions.
Linda Franklin 0:46
And I was trying to do CrossFit and coping with the crazy blood sugars. And I was really having a difficult time when I met him. It was really an eye opener for him and meat. We were just so excited to talk to each other about things,
Stacey Simms 1:00
Linda and that friend Daniel went on to create a now well respected and very large Facebook group for athletes with diabetes. We'll hear more of Linda's story and get some great advice about fitness and type one
in tell me something good. The dedication of a dad and in Innovations an update on the longest wear CGM yet
this podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Welcome to another week of Diabetes Connections. I'm your host, Stacey Simms, and I'm really glad to have you along. We aim to educate and inspire about type 1 diabetes by sharing stories of connection.
I don't know about you, I am on the edge. What a stressful time. I mean, this year has already been bonkers. I find myself, as they say, Doom-scrolling through Twitter, I was already on my phone way too much before this year. And it's just multiplied to the nth degree. Now, don't worry, I'm not going to talk politics here. This is not the place for that you do not come here. I am sure to talk politics. And if we were going to have a show about that, because let's face it, sometimes there are issues you would know before you heard me start talking. This is not that. But I do think it's important to acknowledge that politics is exhausting us.
Everything is exhausting us right now. And I thought it would just take a minute to share with something that is really helping me. And maybe you have your own version of this. Maybe I'll put this in the Facebook group when this episode comes out. And it's Diabetes Connections of the group. I really hope you can join us on Facebook. It's such a great group of super smart, wonderful people. But what's helping me is another podcast. It is pop culture, happy hour. It's an NPR podcast. It's been going on for years and years. I think they just celebrated their 10 year anniversary. And they just talk about pop culture for 20 or 30 minutes. It's fun, it's distracting. And what I have been doing lately because I just found this podcast this year. So there's a huge back catalogue to me. I'm going back and listening to podcasts from 2016 2018. You know, I'm listening to them talk about movies, and TV shows and things that were popular in the news a long time ago. And you know what? It's a great distraction, and it gives my brain a break. So I know you come here for diabetes news and not necessarily weird podcast recommendations. But man that is really helping me right now. Along with walking my dog.
Maybe I should give a little nod to fitness since that was what we're talking about. Actually this episode. You know, I live in the Carolinas. I live in Charlotte, North Carolina. We're so lucky. We live near a Greenway and the weather is generally pretty nice. So I have been able to walk my dog almost every single day. She's actually right here under the table as I tape. She's usually pretty quiet and when she's not, We edit that out. But my dog's name is Freckles. She's not very friendly. She likes us but she hasn't met anybody else that she likes yet. Except maybe my dad. He does like when grandpa comes to visit because he also walks her every single day. But man, she's an interesting character.
Anyway, we will get to Linda Franklin. That's why you're here. Linda Franklin, who is an amazing, amazing story, not just for her dedication to fitness and her passion for it her world records in powerlifting but her diagnosis story and what she found inspiring early on, and a teenage Bret Michaels how he makes an appearance. So we got a lot to talk about. But first diabetes Connections is brought to you by One Drop.
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Like many of you, when I have question about sports and diabetes, mostly about my son, I head over to the type one diabetic athletes group. It is one of the biggest Facebook groups there is. But it's also largely drama free and full of support. My guest this week is a big reason why she didn't start the group. You'll hear more about that in our interview. But she is an inspiring and I think larger than life personality, who challenges us each week with flex Friday and other fun posts. Linda Franklin is a world record holder in powerlifting. And before that, she placed 14th Worldwide in the 2014 CrossFit open this interview was conducted live in that Facebook group, you can watch it there it's recorded and then playback in the group. Or you can see it on our YouTube channel Diabetes Connections over on YouTube, I will link all of that up in the episode homepage as usual, at Diabetes connections.com It was great to talk to Linda here is our interview.
We don't normally take like this and who the heck knows how it's gonna go. But she's been such a great sport. And I'm so excited to welcome my guest someone a lot of you know quite a bit about but some of you may not and boy but a story. Linda Franklin, thank you very much for letting me in the group and agreeing to do this and fingers crossed, it all works out.
Linda Franklin 6:22
Yeah, it will.
Stacey Simms 6:23
Let's jump right in. Because this is a group for and about athletes. And I joined this group because of my son, who was a type one. And he's played a billion different sports. Most recently, he's more interested in wrestling. But I'm just so impressed with the amount of knowledge in this group. Do you mind just sharing how the group itself came to be? Sure.
Linda Franklin 6:46
So Daniel Borba, who has been a lot a little inactive lately, because he's expecting his second child, which is super exciting. But I met him back in 2013, my brother said called me and said, hey, there's a type one diabetic in my gym, my brother on the CrossFit box. And we were both so excited because he knew I didn't know anybody. And so I met Daniel, we did a little tiny podcast that just disappeared, you know, was wasn't much of anything, but it was so great to get to know him. And he'd been thinking about exercising and not there just wasn't much knowledge out there for how to control blood sugars, exercise, being type one, taking insulin, it's very complicated. So he just got decided to start this group and invited me and here we are. This was seven years ago from June, and it's blown up. Well, unfortunately.
Stacey Simms 7:44
Yeah. Well, I mean, there's good and bad, right?
Linda Franklin 7:47
Stacey Simms 7:48
talk about the good and a little bit. I mean, we're gonna talk about your story and all of your incredible accomplishments. But I'm really curious seven years ago, and that's about when I started my local Facebook group to the diabetes community was interested in in kind of different things. The technology has changed. Now the knowledge has changed. Do you remember the first kind of questions people had I imagined it was just how do I work out without crashing?
Linda Franklin 8:11
It was very small. We were like 300. To begin with, I would say for the first year, three to 500 people. So it got to be very intimate. And as the group grows, larger, questions become more voluminous. And you can start categorizing everything. But at first it was Yes, that was a big, big problem, or spike, what a really big problem was because it was really based around CrossFit to begin with was the spike after exercise. That was a huge, huge problem. And for me, too, because I was doing CrossFit at the time. And it was a that crashing and spiking after exercise was a big, big issue in the group, how to eat before you get started and when and how much and how much protein and I could go on?
Stacey Simms 8:57
Well, I'm gonna ask you to so I made a note of that, because I think it would be great to get some of your advice a little bit later on. But you said CrossFit, now I'm looking at your bio, and I don't even know where to start your soccer CrossFit world record holder now powerlifting let's go all the way back before you were diagnosed in your 20s What's your sport in high school? Like Were you always athletic?
Linda Franklin 9:24
I was a cheerleader. Okay, this was the 70s, early 70s back in what was cheerleading,
Stacey Simms 9:30
the sport that it is now because the leader in high school in the 80s and it was not an athletic sport.
Linda Franklin 9:36
No, it wasn't then, but I grew up with a bunch of boys and I climbed trees. I've always been a tomboy. And when I did sports in school and high school classes, I set the standing broad jump record in high school and you know, just stuff like that. I kind of excelled at every sport that I did. Except for basketball. I can't run in triple vault. So that was like, but I think my whole family's pretty athletic.
Stacey Simms 10:04
So when you were diagnosed, first of all, what was the process? Were you given an answer immediately or at age 26?
Linda Franklin 10:12
Was it? We don't know what it was strange. Like I've told someone before, or many people that women, it's typical when you have a lot of high blood sugars for a long time, or even a short period, yeast infections are a really big problem. And it was for me, and I was actually in the midst of bodybuilding, starting lifting weights. And this is what introduced me to weights which I found a real love for. And I started just eating a lot drinking a lot up on my ping and the yeast infections got super bad. I look like I walked like I'd been riding horse for. So I went to the doctor, gynecologist beat into a company says you need to go to the lab, like today. So I went the next day because I'm 26 living by myself and my back. Yeah, whatever. Okay, right. Yeah. And I drink in syrup all day at the lab. And by the time I was done, I was like, almost 800. So they said, we'll come back in a few days. And you're going to go see your doctor on Monday. And you know, but they let me go home. And it was really casual. I mean, they knew, obviously, I was diabetic, but they didn't put me in the hospital right away like they would normally now. And that's pretty much how it all got started.
Stacey Simms 12:07
Did you immediately think? Did someone tell you you can go right back to the gym? Or were you told don't work out? Do you remember anything different?
Linda Franklin 10:12
No, I just remember sitting in the doctor's office with a diagnosis on Monday morning. And he just literally went into a fog. He just said you know you're gonna, this is gonna cut your life short. And just all the old 70s routine. And he wasn't trained. I mean, it was an internist, or whatever you call them and wasn't really trained in depth about diabetes, treated mostly type two. So he did tell me not to do activity. But I didn't go back to bodybuilding because I wasn't feeling good.
Stacey Simms 12:07
What led you back to your activities at all, though? Because you didn't ultimately wind up not exercising?
Linda Franklin 12:14
Yeah, absolutely. So what happened though, is I got really active only to control my blood sugar. I refused insulin, I freaked out. Well, I didn't have parents looking over me gone for doing this. I didn't have
Stacey Simms 12:28
an endocrinologist either. As you said, You know, I didn't. It was
Linda Franklin 12:31
just pretty, pretty basic. And I just decided, Okay, well, after I eat, I'm just gonna I gotta jump rope. I jumped rope, or walked or ran after every meal for about three months, until I was down to eating out of a jar peanut butter and decided, I think I need insulin. I just couldn't do it anymore. But that's I just, it was ingrained in me to exercise anyway, before that. So I decided, Okay, I kind of laid off for a little bit. And then I got back into snow skiing and doing normal things. But I wasn't in great control or anything. But I still did stuff.
Stacey Simms 13:10
Yeah. I mean, you couldn't have felt that great. But you also don't want to sit home and not
Linda Franklin 13:13
feel great. No, I'm not wanting to sit behind and watch everybody do stuff when I know. So when did things start to get better? Actually, I would say right before my first pregnancy, I knew that I needed to get my ducks in a row before this happened. That was when I was 33. And I went to the sweet Success Program. But they were both my pregnancies were planned. And I decided I got my a one c under six and got pregnant, had my first baby. And then two years later, did the same thing. And then after that it got a little bit crazy again, you know, with kids and was hard to keep in control. But that's when I realized I need to do better. I didn't have a blood sugar meter, the first two years, I cut my strips into quarters to save money because the meters then would take cut strips, they won't know. So I did that. And I did all these things to save money. But I did a lot of injections to I was stacking insulin a lot up and down, up and down get really low get really high. And it was I was a mess. Before we move on,
Stacey Simms 14:21
you mentioned something called Sweet success. Is that a local program to you is that a hospital program actually
Linda Franklin 14:27
was a nationwide program, I believe for women type ones that get pregnant and they just start this program suitesuccess. I don't know if it's California based or if it is nationwide. I'm not really sure but it is I do know here in California and it was wonderful. He said he was at a more it was at a UC hospital. I was there every two weeks but they both went fairly well.
Stacey Simms 14:54
It's such a different time I think it's hard to understand is
Unknown Speaker 14:57
Unknown Speaker 14:58
not only the insulins were different But as you said the blood sugar meters were new in the mid 80s. It's not like it is now at all.
Stacey Simms 15:11
Right back to Linda answering that question and taking a look back. But first Diabetes Connections is brought to you by Dexcom. And we have been using the Dexcom G6 since it came out more than two years ago. And it's amazing. The Dexcom G6 is now FDA permitted for no finger sticks for calibration and diabetes treatment decisions. You do that to our warmup, and the number just pops up. I mean, do you remember back before where you had to wait in a two hour warmup, and then you calibrate then it would start populating? It's just a great advancement. We've been using a Dexcom for seven years in December, and it just keeps getting better. The G6 has longer sensor were now 10 days, and the new sensor applicator is so easy to use. Benny does this all by himself. Now. We love the alerts and alarms, and that we can set them how we want if your glucose alerts and readings from the G6 do not match symptoms or expectations use a blood glucose meter to make diabetes treatment decisions. To learn more, go to Diabetes connections.com and click on the Dexcom logo.
Now back to Linda. And she's talking about what technology was like when she was first diagnosed.
Linda Franklin 16:20
No, there were no cgms there were no cell phones. I mean. So it was Harry Caray. You know, I especially being diagnosed in my mid 20s. I know some people that were diagnosis, children, their parents kind of monitored them and got them through high school into adulthood with a lot of success, but also got them real regimented. Whereas me, I'm 26 I've already got my routine and this gets in the way. And here I am gone. Uh, well, I'm just going to make do till whenever until you know more good stuff comes along. And I I suck at technology. But I sure do love it. I'm telling you.
Stacey Simms 17:00
Well, unless I'm laughing technology, I can't even get my your phone good wired things to behave. And you know when my lighting is insane, so we're in good company, sister. Don't worry about that. But let's talk about you said you started to turn things around a couple years after your second child was born. I'm curious, like, Did you meet somebody? Did you just say to yourself, Linda, I'm not feeling great. I want to do more. I got the CrossFit stuff going like
Linda Franklin 17:21
I'm actually no, I never did know anybody until the dots started. So I didn't really know anybody that was type one, until I was probably well, until I met Daniel Borba the founder of the group. That's why my brother called me said I met a type one because I really didn't know anybody than other. I worked in endocrinology office, and there was another girl there that was, but it wasn't the same as meeting and talking about
Stacey Simms 17:49
was it until you met him that you've got things. I don't see more under control. But you're such a success story. Um,
Linda Franklin 17:57
it did help because it, it made me pay attention to it more, I was kind of brushing it under the rug for a lot of years, like, Okay, I'm just gonna just shoot myself through my chains and just keep doing what I'm doing. And he put it in my face. And I was trying to do CrossFit and coping with the crazy blood sugars. And I was really having a difficult time. So when I met him, it was really an eye opener for him and me to talk about, we were just so excited to talk to each other about things. But before that, my whole connection with type one, and any type of anybody else out there with it. What were diabetes forecast magazines, and I'll never forget when I was in my mid to late 20s. I got one with Bret Michaels on the cover on my porch. I had it I have a T shirt, but it was so cool. I'm like, Oh my God, he's a teenager with type one. Wow. Yeah, it was it was weird. But I had stacks of diabetes forecasts and I would read them. And that's how I connected to it. There was nothing else to connect to really for me.
Stacey Simms 19:02
So tell me about CrossFit. This is not for the faint of heart. I don't even sure where to begin. I just think of people flipping tires. Right and to be ranked 14th in the world
Linda Franklin 19:13
at one point. Well, that was 2014 CrossFit open. Yeah. What goes into that? I got in. Okay, well, it's at that point in time, I was training five days a week. And in between all that I was riding up and down to the CrossFit box on a bike that had no gears up and down hills, like so, you know, I'm a nut. So that's what I did. And I just trained five days a week and did everything I could I mostly trained with it was all younger people in the box. So you know, at my age I started like I was like 57. So there just aren't weren't that many people who were that age in my box. So all these younger people in there and I'm going I gotta keep up.
Cuz that's my, that's how I think.
Stacey Simms 20:03
So take us through a little bit of how you manage diabetes, though, for something like CrossFit, when it is it's cardio with strength. There's just so much going on.
Linda Franklin 20:10
Right? Yeah. And there's a lot of variables and you don't know from day to day, and I actually had to talk to the owner there to give me the workouts the day before, which she doesn't know, CrossFit box likes to do that, because they don't want you to cherry pick their workouts, they want you to just come and do whatever is on the schedule that day. But I had told her, I can't keep doing this without knowing because I have to plan. And so she was kind enough to work with me and what I would do, I knew that what time the classes were, and after talking to Ronnie, my coach, back then he wasn't my coach, but he knew I was doing CrossFit. And he was actually an admin in the athletes group and said, you know, do some insulin and eat some protein and a small amount of carbs, but do half the insulin for it, and then go and take some Gatorade, put it in a bottle and have something to sip on, which is what I started doing, and it started to get better. But still, it was never perfect. It was really difficult. The ups and downs. And it mostly was the adrenaline afterwards kicked in. And I kicked in while I was working out. But afterwards, the blood sugar's were high for like 24 hours. And it was ongoing, you know, until I had to stop. Some days were different depending on the workout, but just some workouts just hit me really hard. So it was never stable.
Stacey Simms 21:30
Did you ever figure out how to handle this? I gotta tell you and I'm only dealing with a teenager. Yeah. Isn't CrossFit that much? Like he hasn't workout like that is what I mean. But we definitely have those adrenaline highs after certain sports.
Linda Franklin 21:42
Yeah, they're really tough alone. Yeah, soccer, I have really big problem with that, too. And my bigger problem, I think was all of it was that I would not eat. Like when I did soccer tournaments, I wouldn't, because I couldn't eat when I was out there running because I played striker. And it was, you know, a lot of sprinting, and I just can't eat and do that. So I wouldn't eat. And I think that is part of the problem was that I wasn't consuming enough food and taking insulin for it to get my blood sugar's down into a normal range. I think it's really important that people don't starve themselves around activities, just try to put your food in at a, you're not to stuff yourself, but eat the right things and take insulin for it, and you will get through it. It may not be perfect, but it will be better than if you don't eat at all, because your liver will raise its ugly head.
Stacey Simms 22:37
How then did you go to powerlifting, because that's just a natural progression, it's something happened to just see something or set a goal.
Linda Franklin 22:43
It was not a natural progression. I CrossFit, well, long term diabetes complications actually probably caused it I did with CrossFit, you do a lot of excessive gripping exercises, a lot of things are like do 100 days and then 50,000 level bar and you do the pull up thing. And with all the gripping that I was doing my overtime, your tendons thicken with diabetes when it's out of range. And so that's what happened and my fingers started to trigger all all of them all. But what happened for people who weren't familiar,
Linda, I'm sorry to interrupt you. Can you explain what that is? When you say okay, triggered?
Yeah, so trigger finger is you have tendons and all of your fingers. And there are two that go up to side. And there are little if you can imagine a fishing pole with a line on it with a little I don't fish but me there's, you know, there's a little you know, the little things that you thread the, the wire the line through, okay, so those are on your knuckles, and those of your tendons sliding up and down. So the line so when you when they get thick, and like weedy and stuff, then they don't slide as well, they get caught. So with the thickening tendon, it can't slide through the little shields that are on the side there on your knuckles, so they get caught and they get stuck, and then you pop your finger open. But it's a it's a really common problem with diabetes and in women that are my age.
So I went to UCLA doctor, he said, No, all your fingers are involved, and we're gonna have to do surgery. So I had a lot of hand surgery. And so I recovered and then I had shoulder surgery several weeks later, so I was just a mess for about a year. But I knew that I needed to get back to lifting I just I missed it so much and I just couldn't sit still my blood sugar's were starting to was gaining weight. I'm like, Oh, I just don't like feeling like this. So I talked to my brother who's a CrossFit expert. He's been in the games four times, and he told me you know, you could possibly power left and went back to the gym, started working on it, put a video in the Athletes group and I said, Okay, I've kind of reached a point where I don't know where to go from here. What do I do? And Rodney saw my video and he's like, let's talk. So we talked. And that's how I got started. Wow. What
Stacey Simms 25:11
is appealing to you? About powerlifting? I can think of a lot of things. But I'm curious, like, why do you do it? What do you get from it?
Linda Franklin 25:21
Oh, man, that's a really tough question to answer. I think it's a rush of, and there's obviously adrenaline involved, too, but just lifting heavy, it's mental. You know, obviously, there's a physical benefit for it. But the mental part of it for me is that I like feeling strong. I just love the feeling of being strong, or getting stronger. And I don't care about, you know, records are great and everything. But to me, it's just the feeling of being strong is wonderful.
Stacey Simms 25:54
What was it like, though? I mean, I know it's not about the records. There's a tremendous picture of you. I think you're breaking a record. And there's a crowd of people. I don't know if it's a video screen. I couldn't tell from the photo that I was looking at. And everybody's kind of cheering and robbed me, especially as cheering. Oh, you know what I'm talking about? Yeah, just Philadelphia
Linda Franklin 26:13
meet that. I went to, I believe, yeah. And in fact, that was me. And Roz, such who is in our group and does the daily workouts on the weekends, we did a meet together, Rodney coached six or seven of us out with a group, but there were seven type ones that did that. Wow, that meet in Philadelphia. So I flew out there from California, never flown that far in my life. But I did it. And we It was a blast. And it was a huge type. One thing was so awesome.
Stacey Simms 26:46
I'll come back to the other questions and about the records. But what was that like for you? I mean, as you said, You've never flown that far, you came all the way east to be with a group of type ones power lifting. I mean, that must have been an incredible situation just to be around everybody.
Linda Franklin 27:00
Yeah. Well, and, and in fact, I hadn't met half of them. But we had talked, you know, over social media and stuff for some length. And although Roz, I knew before that she had come out and handled me for a meet in California, which was amazing. Another one of us flew out from Portland. And it was just, I can't even explain how crazy it was with the blood sugars and all the beeps. And it was just insane. But we were all there cheering each other on. And you know, Rodney had his hands full. Let me tell you. That's awesome. It was pretty incredible.
Stacey Simms 27:35
What's different about managing blood sugar's when you're powerlifting? Then CrossFit, do you mind if is like a little bit of advice, maybe to for people who are looking to get into it.
Linda Franklin 27:43
What I found is consistency is key. And it doesn't have to be every day. Because when I first when I first started getting really back into exercise, after being diagnosed, I tried to do something every single day. And I don't do that now. And I don't feel that I really have to other than I don't sit down all day long. But what I find with it is, it's more of a weekly pattern, versus a daily pattern. And if you do, train over time, you'll start to see changes in your blood sugar's at first when I first started, it wasn't great, but I started to learn how to treat. I knew what my weak plan was. And I could say, Okay, today, I'm gonna have a little snack before I go. But typically, I know how to combat highs better because it's not random stuff. I know what I'm getting into. Because it's just easier for me. It's more predictable. And now my body feels that it is to
Stacey Simms 28:45
Is it a matter of keeping track and logs or looking at your CGM data?
Linda Franklin 28:50
A CGM data is important. I used to keep logs ridiculously back before anything was around, so I can't do that anymore. I tried it last two days, and I'm done. But I do keep a workout book. I don't record my blood sugar's though. But I do know that when I go out there, I'm in a range. I either put my exercise mode on, I take my pop off if I see it start to fall, but I typically run fairly flat. Unless I just for some odd reason. Something goes awry. And that happens.
Stacey Simms 29:23
You mentioned exercise mode. Do you use control iQ? Is that what Yes,
Linda Franklin 29:27
Stacey Simms 29:28
Tandem Dexcom. And it works pretty well for powerlifting.
Linda Franklin 29:32
It does when you're doing high reps. When I do heavier weight, lower reps. I don't mess with it. I just leave it alone. But I do. You know I have an exercise bike in the garage. I get on every once in a great while. I do it
Stacey Simms 29:47
a couple of minutes ago, you mentioned complications. And I feel like sometimes especially we as parents, we're so afraid to talk about that kind of stuff. Right? And the only way we want to talk about it is did you do it Right, with what did you do? What was your a win? See? How did you eat? Or did you at hell? You know, we were so narrow minded on that, that I just want to ask you, and I guess I'm, I'm trying to figure how to ask you. But first, let me say thank you for talking about complications in the first place, because it is something that happens. It's not something obviously, you have always taken great care of yourself, even when you were saying earlier that you didn't, you're active, healthy person. Is it hard, though, to share those experiences with the diabetes community?
Linda Franklin 30:29
Actually, it isn't. And I feel that I'm being helpful when I do that. Because it could be diabetes, it could be anything else. To me, it's part of living life. And I look at it as I've done the best that I can, I don't look at it as a bad thing. I just try to let people know as not to be afraid of it, I do as I get older, I do have some anxiety around it now like seeing my blood work. When I go to the doctor i get i get real anxiety around lab work and stuff like that, I it's just part of getting older. It's not just part of being diabetic. You know, my mother died from type two kidney disease. And I helped her go through the process. And it was really, it left a real whole, you know, and I but it also made me aware that I need to, I really need to be careful. And so when I wait for my labs to come, I'm always like, how are my kidneys, you know, that's the first thing I worry about, because of what she went through. I saw what she went through. But you can only be the best you can from day to day. And I just hate to see people beat themselves up day after day. And I have adapted to what my hands are now they're not pretty and they're not, you know, my palms are strong, my fingertips are weak, but I found something I could do to keep me healthy. So you just adapt around these things. It's what we have to do as human beings, regardless of what we're dealing with. And I think it's good to know.
I mean, I had someone reach out to me the other day about trigger fingers. She's been diabetic for almost 20 years, maybe I feel so good that people can reach out to me and talk to me about it. Because it's it's a real thing, just like frozen shoulder and all that other stuff in the end being type one diabetic. And I just think that it's okay. There are ways to handle it. I had a great surgeon, he fixed me up not perfect, but it's another chink in my armor. Now, and now I've got stories to tell right? down
Stacey Simms 32:22
it's life with or without diabetes. Yes. You had mentioned before we got started that your daughter had learned a lot from you, in terms of being able to spot diabetes. Can you share that story?
Linda Franklin 32:35
Yeah. So you know, with my kids, obviously, I've had two kids while being pregnant at 33 and 35. And both of them have had to give me glucagon. Unfortunately, I know, there's a lot of people that have lived as long with diabetes as I have and have never had to use it. But here I am. And they recognize signs just from being around me. Are you low? All the typical questions, but she worked at a daycare center and in a gym, and the couple brought their daughter there. She was 18 months old, and they dropped her off and she was not well, and my daughter was holding her and said, I think she's diabetic. I don't know what clued her in but there was some symptoms that this little girl was having that, you know, she recognized. I can't really tell you but I'm so thankful in a weird way that she did.
Stacey Simms 33:25
And and the 18 month old did wind up getting diagnosed.
Linda Franklin 33:28
Yes, she was the youngest in the county. Yeah, at that time. And actually she was it was in the hospital for quite some time and we ended up nannying her after that first my daughter, and then I did and I gotta tell you, kudos to you because I nannied her for six months, and I was a wreck. Oh, the literal wreck. I'm like, I can't do this anymore.
Stacey Simms 33:52
There is truly I mean, every there's no good. There's no bad he didn't do the type one right? It all stinks. But there is truly something unique about toddlers and very little ones. It is a it's a circus. Yeah. It's just it you have to laugh.
Linda Franklin 34:07
Because thank God, I know. Well, you know, the parents were super cool. And they just wanted her to be they loved having us there. And they knew that I handle it. But the thing is, and they were regimented, but not to the they want her to live a normal life. And it was so great to know that not to restrict her so much that she couldn't have fun. That's great. That's, that's funny.
Stacey Simms 34:30
So a world record holder, all this wonderful stuff. You are in your early 60s. Now what do you have any any other goal or is there anything you're working on now? I mean, you've done enough You don't have to.
Linda Franklin 34:44
Actually I am signed up for me to November, but it's November 7, in LA there's COVID there's the election. I think I may just pass on this. I'm really giving it some serious thought and I think it might just I might just do a mock meet at home. You know, I'm a little scared about the COVID thing, because I've had diabetes for so long and, and my age, even though I'm healthy, I don't know how much vascular disease I have. And they do say that that's an issue with it. So I just want to be careful. And there's no point in me really stressing out about something like that right now. It's not that important to me to go do so I figured I could just do a fake one in my garage. Hey,
Stacey Simms 35:24
I've seen some pictures of your garage, though.
Linda Franklin 35:26
I'm not what I was
Stacey Simms 35:28
gonna say you. Did you put that together this year?
Linda Franklin 35:31
Yeah, actually, some young kids here at the gym locally, the gym shut down. They had it at the gym, back up, and they sold it. And I bought it. Oh, I was very blessed in that regard. But yeah, so it's little tiny, single car garage. But I got it all in there. Just what I need. And it's working great.
Stacey Simms 35:49
I'm curious. After all this time, it must be just such a part of your life. But do you still have to get psyched up to work out as often as you do? Are there days where you're just like, I'm laying in bed on none of this nonsense?
Linda Franklin 36:00
And not very many? Yeah. I have them every now and then I had one just I think it was Sunday. Actually. It was like, yeah, I'll just put it off to tomorrow. But no, I have to set goals. Oh, to stay motivated, you know, but I I'm always looking for a goal. I can't not have one. And I think it's really important for people to have goals, but not to get so hung up on it. It's not a failure. If you don't meet it, it's the fact that you're working on something is the success.
Stacey Simms 36:30
Before I do let you go here. I'm curious. There's so many people in the group here for support here for advice. If somebody is just kind of dipping their toe in the water as an adult with type one or a parent of a kid who's you know, playing high school sports, any advice for them? I mean, I would assume that with the technology that we have, things are easier, but there's still some basics that you have to think about.
Linda Franklin 36:50
Yeah, well, there's always a couple things I preach about. And one is when I did have that really bad, low blood sugar, my daughter's boyfriend's a firefighter. And he said, Hey, you need to get up a box of and put on their low blood sugar type ones, snacks, or whatever you want to put on there. But make it bold and let everybody know where it's at. So when you go to sleep at night, and you start to have a low, it's always so important to have something on you or near you all the time. It doesn't have to be like if you're in the house, big deal. It could be across the room. But when you're in bed, and you're sleeping, you should have something by your bed, it gives your parents peace of mind. Or if you go play sports, you need to let everybody know that you're diabetic. I when I first joined a soccer team, that's the very first thing I did. I'm actually proud to be diabetic. Not that I like having it. But I'm proud to tell people look at this is me, this is what I'm going to do. And I want you to support me because I'm going to do this. So I think it's important to embrace it. Just let people know, don't hide it from anybody. And because they'll feel guilty if something happens. It's not fair to them, either.
Stacey Simms 38:00
It's a good point. Yeah, it makes it easier for everybody. I always feel bad when people or kids are shy.
Linda Franklin 38:04
And it's an educational point to you know, you bring it up and didn't tell people I had a guy asked me the other day goes home. You got it bad.
Unknown Speaker 38:12
Yeah, you had the bad kind.
Linda Franklin 38:15
Okay, so we sat for about a half an hour after about the night school.
Stacey Simms 38:20
I just curious too, is anything ever happened? Where like it's popped off? Or somebody hit it with something? You know, My son has all sorts of crazy stories. Oh,
Linda Franklin 38:28
actually, no, I've been pretty lucky. I'll just you know, knock it off on a door jamb or something. But you know, that's happened a couple times. But other than that, I'm pretty careful
Stacey Simms 38:37
with a thanks so much. This was so fun. Thank you.
Linda Franklin 38:39
You've asked questions I've never been asked before. I love it.
Unknown Speaker 38:48
You're listening to Diabetes Connections with Stacey Simms.
Stacey Simms 38:54
You can find more information on Linda and articles on her and find that picture that I mentioned with Rodney Miller and I will put that in the Facebook group as well. But you can find everything at Diabetes connections.com. Every episode has its own little little almost like a blog post. But every episode has its own page with a transcript as well. You can listen you could download the episodes. You can listen on any podcast player. I mean, at this point wherever there is audio on Stitcher, Pandora, Amazon, we're all over the place. You can find Diabetes Connections. Up next Tell me something good with a very devoted diabetes dad.
But first diabetes Connections is brought to you by Gvoke Hypopen. Almost everyone who takes insulin has experienced a low blood sugar and that can be scary. A very low blood sugar is really scary. And that's where the Gvoke Hypopen comes in. It is the first auto injector to treat very low blood sugar. Gvoke Hypopen is pre mixed and ready to go with no visible needle. That means it's easy to use in usability studies 99% of people were able to give Gvoke correctly. I am so glad to have something new find More go to Diabetes connections.com and click on the G voke e shouldn't be used in patients with pheochromocytoma or insulinoma. Visit gvokeglucagon.com slash risk.
In Tell me something good This week I want to share with you this story. This is so adorable. I found this on Facebook and I think it do need to see the photo. So I'll link that up in the group as well. But I will describe it the best that I can. Let me read the caption first from Andrea and she says yesterday we went to Mayci's endocrinology office for our first of three pump training classes. Mayci was given the opportunity to put a trial failing pump on to get the feel of it and become used to it. She was a bit afraid and apprehensive at first. Now looking at this photo, I want to say Mayci is maybe three, maybe four. She is a preschooler, I know that much. And the pump that they're talking about is the Omni pod here. Andrea goes on to say, Daddy stepped up and volunteer to also get a trial sailing pump. He's not type one to help support and show me see it is no big deal.
And this is the cutest photo of the dad right next to me see, and they're both showing off Omnipod on their arm. And she looks a little nervous. Still, you know, preschoolers are doing that smile, and they're a little nervous. But then it's got to be great to have her dad next to her doing that. Kudos. I think by the time this photo has posted the time has gone by maybe two weeks, and she may have already been live with the Omni pond pump. And I hope things are working out great.
I tell the story in my book, the world's worst diabetes mom. But one of the things that made me the world's worst diabetes mom is that I never tried on any of the technology. I never, you know, I never tried to make Vinny feel less alone. It sounds terrible when I put it that way. But I never put on a pump instead, I never put on Dexcom several reasons why. First of all, we're so lucky Benny has been surrounded by friends with diabetes, since he was diagnosed. No, we didn't have anybody close to us. We didn't have any people in our town or our school until at the end of first grade. And he was diagnosed at two. But we didn't know people through jdrf. And we didn't know people that we could hang out with and see one of my best friends started a little diet buddies thing for little kids. So we always knew people who had the same tech on that he had. And the other reason I never did it is because I was so afraid that if it hurt me that I would never be able to put it on Benny again. And that's true. I was terrified that if a pump in set hurt or a shot hurt or late by the time I had Dexcom he was he was nine years old, it didn't really matter anymore. But if that hurt, I had hardened my heart in the way that you do in this terrible way that you have to do when you are doing medical things necessary things to your child. And boy that sounds so dramatic when I put it that way but I think a lot of you understand what I mean. And we had caregivers who did it for themselves just because they wanted to experience it and said oh it's no big deal. It'll be fine. I was never sure it would be no big deal. Is that interesting how we as parents do things so differently?
But back to this fabulous dad if you have a Tell me something good story, you can always email me Stacey at Diabetes connections.com or just drop it in the Facebook group I every so often, and they are always such great story. So thank you so much.
quick look at innovations this week a segment I added this year Sensionic holdings which is the company behind the eversense implantable CGM, they have announced they are filing for a supplement application to extend the wearable life to 180 days. What does that mean? It means Hey, the FDA is now considering letting the eversense CGM system expand 280 days in the US that is quick math six months. And that is up from the three months that it is currently allowed for, you probably haven't heard too much about ever since recently. And that's because honestly earlier this year, wasn't clear that they were going to make it with COVID. Everything else that had happened, it really seemed like the future of the company was in doubt. But they cut a deal with asensia diabetes care, which used to be part of Bayer diabetes. So very, very big company here, which I think is a good move for the ever since we've looked into it because with many wrestling and who knows what will happen with wrestling with COVID. But workouts are starting again pretty soon as I can't imagine they're doing actual wrestling. I'm guessing this is more just fitness workouts. But wrestling is a really tough sport for diabetes technology as you can imagine, because everything's fair game, so somebody could put their hands pretty much on you almost anywhere that you could put a Dexcom or a pump in set. So we've got a lot of great advice from people who've been there. And we've got lots of good methods but we are looking into ever since as a possible backup plan. It's weird to think about because you know, full disclosure here you know, we use the Tandem X to with control IQ which means we need the Dexcom G6 right now. So that kid could have the ever since under his skin and then the Dexcom has Well, not during wrestling season, I don't know what we're going to do. But as always, I will keep you posted on that. But if you have any news for innovations, and that does not have to be a big technology news story, it can be your hack your tip your trick for diabetes, please let me know as well.
I said a couple of weeks ago, this was going to be a very busy time in terms of news stories in the diabetes community always seems like fall has a lot going on. And that is definitely the case. podcasting is really hard for breaking news. But I do my best when something happens to kind of go more in depth and give you a perspective on it by talking to the actual players involved. So I hope you're in the Facebook group or follow me on social media, because that really is the best way to stay on top of what we're doing here. I don't mean to be cagey. But in terms of the timing of the podcast, there are a few things that I have that I've taped that I hope to release in the next two weeks. And as I'm talking to you here, as I'm taping this episode, I've got like three different news stories that I'm working on that I don't know, maybe they'll be old news by next week. So got to do the best we can with the weird time shiftiness of podcast, or maybe someday somebody will pay me to do a daily diabetes news show. If that's you, let me know. Ah, thank you, as always 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 next week. Until then, be kind to yourself.
Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged
Diabetes nurse practitioner Michael Greenberg just ran the New York City Marathon – his first marathon – with Beyond Type Run, a group of people with type 1 diabetes fund raising and training together.
Michael shares advice about running and training with T1D, about what led him to change his career path and how his love of comic books and wrestling help him deal with diabetes.
Stacey talks about Pie Benny Day from a few years back: watch the video
In TMSG: a sports connection results in a real life meetup that one kid will never forget.
At the end of the show, Stacey shares details of Benny's recent surgery - as it pertains to type 1 diabetes.
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