Running Across the USA with Type 1 Diabetes

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Don Muchow, Ironman and ultra-marathoner, deserves a special place in the annals of athletes with Type 1 diabetes. But what’s truly remarkable about Don’s story is that he spent the first several decades of his life on the couch, fearful of exercise-induced hypoglycemia, without the faintest idea that a world class endurance athlete lurked within. He started running in his 40s and he hasn’t looked back, tackling longer and harder challenges as he has aged.

Don has just embarked on a journey of almost unthinkable endurance – running all the way across the USA, from the Pacific coast to the Atlantic. He runs to push himself, and to push others too.

Don’s story starts in 1972, when he was diagnosed with Type 1 diabetes as an adolescent. Like everyone in that era, Don grew up in what now seems like the stone age of diabetes management. It would be over a decade before he got his first glucose meter, and even longer before the mainstream medical establishment properly understood the consequences of chronic hyperglycemia. Debilitating complications and early death were considered all but inevitable.

“I still have a vivid memory of getting my first glucometer, which was the shape and size of a brick, and required a hanging drop of blood. I was really excited about that. It took a minute to wait for the results! Prior to that, it was a matter of testing your urine to see if you had spilled sugar out of your bloodstream.”

Don explained that it took so long to get feedback that it wasn’t really possible to analyze one’s diet or behaviors to understand what was really affecting his glucose level.

“Back then, if you wanted to get your blood sugar tested you went to the hospital where they had the equipment to do that. It was something you did once a month. It was a big deal.”

Managing the condition virtually in the dark, people with diabetes at the time were advised to live as cautiously and predictably as they could.

“My doctor at the time said, ‘it would be much easier for you to manage your diabetes if you didn’t do things that caused sudden changes in your blood sugar.’ You know, one of those things obviously is don’t eat that piece of pie just because you feel like you want pie. The flipside of that is: don’t go play outside, don’t ride your bike, don’t exercise, don’t swim. I took that advice seriously.”

He probably took it too seriously. Flash forward to 2004: Don was 42 years old, overweight, out of shape, and just beginning to feel the damages wrought by chronic high blood sugars. A visit to the doctor would give him the kick in the butt that he needed to change his life:

“I got a diagnosis of proliferative retinopathy in my left eye, and had to have a treatment that left me with blind spot. I realized that I had to try something now, because the alternative was not gonna look good. I threw out my big plates, tried to eat things that were lower in carbohydrates, and tried to get some activity.”

Around the same time, a diabetes educator introduced him to the concept of exercise equivalence: that certain bouts of exercise could have the same glucose-lowering effect as certain amounts of insulin.

“For example, you could learn to think of a 20-minute walk as equivalent to a certain amount of insulin. And rather than giving the insulin that you didn’t necessarily need to correct a high blood sugar, and end up storing all that sugar as fat, you could actually use exercise in its place, increase your basal metabolic rate over time, and experience a leveling effect on your blood sugar that you probably wouldn’t have gotten if you’d been sitting around on the couch.”

Don had been profoundly sedentary, living his life by the advice that he’d received decades previous, advice that had only become more and more out of date as the tools of diabetes management got better. He was not exercising at all. But the diagnosis with retinopathy pushed Don into action. The future ultra-marathoner began his journey with just a few steps:

“It was a bit of a challenge for me even to get started. At first we’re talking about maybe 20 minutes of walking on a treadmill. At that point in my life I was already feeling like I might have a heart attack just from walking up the stairs. And that didn’t feel right, to feel way in my early 40s.”

He pushed himself from walking to running, and eventually to biking and swimming too. It wasn’t easy. At the time one couldn’t simply log onto Facebook’s Type 1 Diabetic Athletes Group and ask for advice. Don needed to discover for himself, through trial and error, the myriad ways that exercise can impact blood sugar:

“I definitely went through a phase where everything new that I did seemed like it was wrong. But at least it was new data. I would misestimate how much exercise was sufficient to drop my blood sugar, or I would discover after it had come down to a normal level that it would continue to drop. All of the things that people living with the disease in this day and age already know about: insulin sensitivity, post-workout spikes, post-workout lows, all of that stuff.”

Eventually Don did meet some more experienced runners with Type 1 that graciously offered to help him out with his own management. It’s a role that Don now relishes to play himself.

Don Muchow - Running Across the USA with Type 1 Diabetes

In the next decade, Don worked his way up from those first tentative treadmill sessions in incredible fashion. Walks led to 5ks, 5ks to 10ks, 10ks to marathons. He was nearing 60 years old and had just placed on the podium at a quadruple marathon when realized that he would probably never get any faster. But he wasn’t done setting new goals for himself: “One thing I can do is keep running longer distances.” That set him on the path that resulted in runs across Iowa and Texas, and will soon see him run from one coast to the other.

With his commitment to exercise, a better diet and the latest technology, Don’s glycemic control is better than ever. He’s found the balance of insulin, carbohydrates and energy that he needs to keep himself fueled and healthy on his long runs. When he gets well above marathon distances, 40+ miles, the intense physical stress of the run can cause his blood sugar to behave unpredictably. And so Don will average 30-35 miles per day on his run across the country, a distance that sounds outrageous to me but is modest and manageable for him. His wife follows with a camper van and a rooftop tent, and he’s planned the route to avoid the interstates, hitting as many little road and small towns as possible.

You have to think a lot about food when you’re planning to run hundreds of miles for weeks on end. Don mostly sticks to keto snacks like cheese and nuts during a run, saving sugar for the times that he really needs it:

“For me, going at a slow and comfortable pace that I can sustain for more than a hundred miles, I want to have keto food. That’s my diesel fuel. I think that people who eat nothing but sugar, honey, or glucose gels because they’re trying to break a marathon record – that’s great for them if that’s what they’re trying to do. But if you’re not going at rocket speed, don’t take on rocket fuel.”

This appears to be good advice even for those without diabetes: a 2016 study showed that committed endurance athletes can have surprisingly high insulin resistance, potentially attributable to the steady stream of high-sugar drinks and snacks that they typically depend on.

I hadn’t yet asked the biggest question: why run across the USA?

“Obviously, there’s the personal challenge of doing something difficult, with one hand tied behind my back testing my sugar. I want to see what I can do.

“I also want to see what any of us can do. I wasn’t born with a special set of genes or anything like that. I started when I was fairly old. I feel like I’m an example of what an ordinary Joe could do if he tried.

Don Muchow - Running Across the USA with Type 1 Diabetes3

“My biggest and most important goal is to encourage people who are as afraid as I was back in 1972 of doing anything that might drop my blood sugar. I want to say to people, ‘Look, there are examples that you can follow. There are over 300 folks with Type 1 that have done full Ironmans. There are people that have hiked the Pacific Crest Trail. If you want to know how to do this, there’s a community of people, they’re reachable and they’ll talk to you!’ I didn’t have that back then, and I want to be sure that everyone that wants to go out and play knows somebody else that can help them.”

Don’s run started in California on February 1, and should last about four months. If you want to support Don’s cause, follow his progress, or even run with him on the road, check out his website: T1Determined.

For more information on diabetes and exercise visit Diabetes Daily.

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