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"We're not in this alone" - Gary Hall, Jr on Winning Olympic Gold with T1D

Diabetes Connections with Stacey Simms Type 1 Diabetes

Release Date: 07/27/2021

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

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

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

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

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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.

 

Benny  28:00

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