Racing Type 1 Diabetes to the Cure

By J. Jody Kelly – July 5, 2012
Photography by Brian Fitzsimmons

What does a two-time Ironman do when a vital part of his body, his pancreas, fails? Quit racing, sit on the couch, and dwell on past glories? No, no, and no. Not if your name is Todd Werner. You get back out there and race another Ironman. Then you form a bicycling team that will raise money for research to cure Type 1 diabetes. That’s what a big-hearted Ironman like Todd Werner does.

When Werner received his diagnosis of Type 1 diabetes two years ago at age 39, he and his wife, Teresa, weren’t as shocked as they were when their only daughter Ava heard the same sobering news a year and a half earlier. She was 5 years old. They learned that some people are genetically predisposed to Type 1 diabetes but, at that time, they knew of no relatives with the disease except for an aunt on Werner’s father’s side of the family. Immediately, all three Werners learned how to prick Ava’s finger for a blood glucose test, how to inject insulin, how to help her eat properly, and much more.

Two weeks after Werner’s own diagnosis, he was still learning how to count his carbohydrates, monitor his blood sugar, and manage his insulin intake when he ran the 3M Half Marathon on January 24, 2010. He admits to feeling “scared to death.” A friend ran right beside him and his wife monitored him closely from the sidelines. But Type 1 diabetes didn’t degrade his performance. He scored a personal record, finishing in 1:49:51 and averaging a mile in 8:23 minutes. Not too shabby, despite having to cope with a life-threatening disease for which there is no cure—yet.

Before his diagnosis, Werner had finished two Ironman competitions, Coeur d’Alene and Cozumel, along with numerous foot races and shorter triathlons and five half Ironman-distance races. He finished his first Ironman in just under 12 hours and his second in a little over 13 hours. Werner had to work his training around taking care of his family and his job at Dell. And yet his pre-diagnosis Ironman times were impressive enough to rank him in the top 25 percent.

Shortly after returning from Cozumel, Werner developed the same annoying symptoms that his daughter Ava had experienced: excessive thirst, urination, and fatigue. Overnight, his vision deteriorated so much that when he went out to ride his motorcycle, he couldn’t read the street signs. His doctor told him that his blood sugar reading was way off. His diagnosis was diabetes, but not the more common Type 2, which most often occurs in middle-aged and older people who tend to be overweight and sedentary. Accounting for about 93 percent of diabetes patients, Type 2 can be reversed with permanent, major lifestyle changes. Their pancreases still work to produce insulin; they just produce too much of it.

Werner was diagnosed with Type 1 diabetes, which can’t be reversed because the pancreas simply shuts down. Over a period ranging from a few weeks to about a year, according to Werner’s nurse practitioner, Carole George, the pancreas stops functioning and no longer produces the insulin the body needs. Type 1 diabetics must rely on insulin from external sources. If they don’t get it, they could suffer kidney failure, blindness, heart attack, stroke, nerve damage, amputations, and death. Once called juvenile diabetes, Type 1 is actually diagnosed as often in adults as in kids. In fact, 85 percent of people living with Type 1 diabetes are adults since there are more people over 21 than under.

How did Werner learn to cope with this disease? Like an Ironman, of course. His nutritionist, Sandi Spicer-Moore, reported that Werner spent no time in denial. “He learned quickly how to manage his blood sugars and food intake. He already had a good understanding of carbohydrate counting. It took only a few weeks to determine his specific insulin needs for carbohydrates. He was mentally ready to move from multiple daily insulin injections to insulin pump therapy when I first met him shortly after diagnosis. The transition to the pump allowed much more freedom in his food choices and options for adjusting for exercise.”

Werner focused so well on his nutrition during races that he was able to block out everything except swimming, bicycling, and running. The downside? Werner ran an extra loop at the Capital of Texas Olympic Triathlon on May 30, 2010. He felt great throughout the race and didn’t discover his extra mileage until he met up with his friends, who’d finished 20 minutes earlier and were beginning to wonder where he was.

By the time Werner was ready for his first post-diagnosis Ironman, he was an old hand at coping with his disease. Werner mounted a control panel on the handlebars of his bicycle that displays information collected from two wireless devices. One is a continuous glucose monitor that tests his blood sugar level at regular intervals. The other device is an external insulin pump with a subcutaneous line that delivers just the right amount. Thus armed, Werner raced Memorial Hermann Ironman Texas on May 23, 2011. The weather was brutally hot and humid, but his finishing time was only a few minutes slower than his time for Cozumel.

In a single word, what Werner obtained when he continued his post-diagnosis athletic pursuits was this: “Validation.” He proved to himself that Type 1 diabetes is no barrier to a full life. Many athletes with serious illnesses might be satisfied to continue racing just for themselves. Not Werner. He went on to help establish the Austin chapter of JDRF*, the leading global organization focused on Type 1 diabetes research and the largest charitable supporter of research on Type 1. Actress Mary Tyler Moore is the international chairman of the foundation.

Austin is generous to its own. Though only a couple of months old, JDRF Austin is already ranked seventh in the nation for fundraising. Werner and his team of cyclists are training for a 100-mile JDRF bike ride in Burlington, Vermont, on July 12–15. Each member of the Austin JDRF cycling team is raising $4,000 to help cure Type 1 diabetes. So far, seven people have made this commitment. About 20 others are participating in the local training rides or offering other support.

In addition to riding in Vermont for himself and his daughter, Werner is also helping to coach the newer riders and has instituted a no-drop policy. No matter how new to cycling someone is, there will always be other riders nearby to help fix a flat tire or offer tips and encouragement. Werner wants to make the point that anyone can become more fit and healthy through exercise and anyone can help others.

Another JDRF cyclist, Julie Hiebert, 54, is doing the Vermont ride for her 24-year-old son, a Type 1 diabetic. Carlo Cucina, 41, is doing it for his 8-year-old daughter, also a Type 1 diabetic. Crystal Harris, 41, is a good friend of Werner’s wife and daughter. So far, three additional riders have committed to the Vermont ride: Kitt Dickey, Emily Rhodes, and Joscelyn Scott.

After a recent 50-mile training ride on the infamous “dam loop,” Laura Mandy, 40, Peter Rodriguez, 45, and Kris Fisher, 36, talked about their supporting roles. While none of them has Type 1 diabetes or family members with the disease, they are passionate about finding a cure. They respect Werner so much that they will do whatever they can to help him and other Type 1 diabetics. The same is true for Kris Pelky, 33, and Ben Pelky, 35, who are supporting the cycling team. Their young daughter has Type 1 diabetes.

No one expects the Austin JDRF riders to gather enough donations to cure Type 1 diabetes by themselves but, by pooling their contributions with those collected from all the other chapters worldwide, Werner hopes to give the best researchers a boost that will put them over the top as they seek a cure for this potentially fatal disease.

Type 1 diabetes is a serious disease, but how does it work anyway? Nurse practitioner Carole George explained “the pancreas is an endocrine organ that makes exocrine hormones that digest our food and endocrine hormones such as insulin and others. The cause of Type 1 diabetes is uncertain but is believed to be caused by an environmental trigger in genetically predisposed people who then develop an autoimmune reaction destroying the beta cells that produce insulin.”

She added that, “When glucose molecules attach to red blood cells, they stay attached for 120 days. That’s why we follow a lab called a “hemoglobin A1c” every three months to see how someone’s average blood sugar control is doing. For the patient, these red blood cells are flowing through their blood and over time can cause the commonly known microvascular diabetes complications. For instance, in the eyes they cause the vessels to swell and rupture and eventually hemorrhage, which is called diabetic retinopathy, the leading cause of preventable blindness. A common symptom is for vision to become blurred when glucose is very elevated; this is individual per patient. Some people get blurred vision with blood sugars greater than 400, some greater than 200, [while] some have no complaints at 500—[it’s] completely individual.

“Similarly, the kidneys filter our blood but don’t like to filter blood greater than 180 mg/dl so when sugars are high, people often urinate excessively and are consequently unusually thirsty. That’s the kidneys trying to rid the body of this excessive sugar. Over time, this is what causes damage to the fragile filtering system of the kidney and can eventually lead to dialysis where a machine has to do the filtering. One of the ADA standards of care is to check for microalbumin (baby protein in the urine) on an annual basis.”

Also, “I would add that when large red blood cells associated with poor glycemic control can no longer deliver oxygen to nerves all over the body because they simply can’t fit through tiny capillaries that feed the nerves, people start to develop nerve damage that may present as numbness and tingling in their extremities, sexual dysfunction, a wound that won’t heal properly, or gastroparesis (nerve damage to the GI tract that results in symptoms of nausea and vomiting when people eat).”

According to the JDRF, two promising areas of research are transplanting beta cells and developing an artificial pancreas. In fact, clinical trials will start soon for the artificial pancreas. A reliable cure may be years or decades away, but researchers are working hard to develop one.

Type 1 diabetes is indeed a serious disease. But it doesn’t have to stop you from living the live you want, as long as you’re careful. Just ask Todd Werner. And, yes, he plans to do more Ironman races but not every year. The training takes too much time away from family life. His next one will probably be a destination race at a location where his family can also have a good time. “Laissez les bons temps rouler.”



J. Jody Kelly, owner of Strengthmobile, is an ACE-certified personal trainer who conducts exercise sessions in the homes of the elderly or disabled. She races triathlons, lifts weights, and takes Pilates mat classes.

 

 
 

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