Recently, 500–800 people gathered in Doylestown, Pennsylvania, for the 18th annual Tour De Cure, a fundraising event for the American Diabetes Association (ADA). The event includes cycling routes from 12–100 miles (more on that in a minute), as well as the option to walk or run. This particular event is one of 51 that the ADA will host across the country this year. According to Nathan Hughes, Development Manager for the Pennsylvania chapter of the American Diabetes Association, this year’s campaign is expected to generate over 18 million dollars.
As the name suggests, the Tour De Cure raises money for diabetes research. The long-term goal for the American Diabetes Association, of course, is a cure. But until that day comes, the money raised for diabetes research will still help improve the lives of those living with the condition. After all, it is through pioneering research that we have developed better insulin, continuous glucose monitoring, and pumps, to name a few. And there are new avenues on the horizon everyday.
I participated in this event, riding 63 miles around Bucks County, PA, with other committed fund-raisers. Here I present my story, along with those of Andrea Deutsch and David Endy.
Scott Coulter
How long have you lived with diabetes?
I was diagnosed with Type 1 diabetes at the age of 15, and I’ve lived with the disease for 25 years now.
What motivated you to join the Tour de Cure?
Even though I’ve had diabetes for 25 years, contribute to an online blog about diabetes, and have followed the work of the ADA for many years, it was cycling, not diabetes, that started this journey for me. I started cycling about a year-and-a-half ago as a way to help lose some weight and improve my general health. I wasn’t really thinking specifically about diabetes when I started. As I continued cycling, I discovered how much I enjoy it — it gives me energy, it’s fun, and it HAS helped me slowly drop some weight (though I have plenty more to lose). And of course, it also promotes better blood sugar control, and lowers the amount of insulin I take. When I saw the Tour de Cure, it was a perfect fit — a great cycling goal, and a cause I care deeply about.
What challenges have you faced living with diabetes?
Living with diabetes is so hard to describe to people who don’t have it. I wrote a blog entry about the “invisible” nature of this disease — the way in which we carry an emotional, logistical, and sometimes physical burden that simply can’t be translated to the people around us. That may be one of the biggest challenges for me. As my own wife has said to me during moments of frustration and burnout, “I wish I could know what it feels like to live with this!”
What skills and insights has diabetes given you?
We don’t often talk about the positives of diabetes, but they exist. Diabetes has taught me a great deal about balance — physical, emotional, and even spiritual. It has been, as my mother likes to say, “a forced practice.” In that way, it can be a spiritual practice, in which we learn to let go, to accept what is beyond our control, and to embrace what is within it.
What issues affecting the diabetes community most concern you?
I worry a great deal about the cost of insulin, and access to health care. Watching the dismantling of the limited gains made under the Affordable Care Act (ACA) is a daily heartbreak for me, because I know how cruel and devastating the old system was for people with preexisting conditions.
Beyond diabetes, who are you?
I am a working musician and music teacher, a devoted husband, and a “father” to four cats with my wife, who may be the most supportive, compassionate, and wonderful human being on this planet!
Andrea Deusch
How long have you lived with diabetes?
I have had Type 1 diabetes for over 49 years since being diagnosed at the age of 15 months
What motivated you to join the Tour de Cure?
A friend who is an avid cyclist told me about the Tour de Cure and I thought it made a lot of sense to ride for a cause that affected me.
What challenges have you faced living with diabetes?
My biggest challenge is trying to stay as healthy as possible in the midst of a busy lifestyle. It means making smart decisions about what I eat, getting enough exercise, managing stress, and dosing my insulin so that I avoid going too high or too low.
What skills and insights has diabetes given you?
I have gained a few things living with diabetes for almost 50 years. I have gained discipline, as the consequences of being sloppy with this disease are not fun. I have also gained a sense of empathy for those who struggle with their health, as I understand how difficult a day can be when you don’t feel well.
What issues affecting the diabetes community most concern you?
One is access to affordable health insurance for people with diabetes. I am the owner of a pet store called Spot’s — The Place for Paws, in Narberth, PA. I was able to open the shop about 15 yeas ago after having been an attorney. At that time, I was grandfathered into an insurance policy due to my prior job, but that policy was getting prohibitively expensive as the years went by. No other insurance company would even consider quoting me for a policy because of my diabetes. I was effectively being squeezed out of the health-insurance market, as well as my role as a store owner, because of the lack of access to affordable health insurance. When the Affordable Care Act was implemented, and I could no longer be discriminated against as a person with a pre-existing condition, I had access to affordable health insurance, and I could continue to run my business. It was life changing for me. If those with pre-existing conditions such as diabetes are once again denied access to affordable health insurance, it is essentially telling any children that are diagnosed with this condition (or many others for that matter) that they will never grow up to work for themselves and that they will always have to rely on others who can provide coverage for them. It makes a bad situation much worse.
Beyond diabetes, who are you?
I am a small business owner and am the current mayor of Narberth, PA — I am the first woman to ever hold this position. I have many interests, including advocating on behalf of the ADA, The Pennsylvania Health Access Network, and The Small Business Majority for health-care policy that makes sense; being on the Volunteer Board of the Tour de Cure; and being the pet mom of my wonderful rescue dog, Daisy.
David Endy
How long have you lived with diabetes?
I’ve had Type 1 diabetes for 30 years. I was diagnosed at age 22.
What motivated you to join the Tour de Cure?
I’m an avid cyclist. I started cycling soon after my diagnosis to help control blood sugar and maintain fitness.
What challenges have you faced living with diabetes?
It’s a daily “job.” There are no vacations. It can take a toll physically, as well as mentally.
What skills and insights has diabetes given you?
I had a fellow Type 1 ask me, “What’s the best thing about diabetes.” I initially thought that was a silly question, until I thought about it a bit. I think of what my life would be without diabetes. I may have never gotten into fitness and taking care of myself. It’s interesting to think about what I would look and feel like if I were not diagnosed.
What issues affecting the diabetes community most concern you?
I think the cost of insulin is very concerning. I have health-care coverage that covers a good portion of the costs. But for folks who do not have coverage, the costs of insulin can be astronomical.
Beyond diabetes, who are you?
I work for an engineering software company in finance. I’ve worked there for almost 20 years. I’m married with no children, but my wife’s parents recently moved in with us, due to her father having a stroke. I enjoy working around the house, and obviously, cycling. I ride about 3,000 miles a year. I also do yoga a couple days a week, as well as rowing and TRX work outs a couple of mornings a week. My wife also started raising ducks this spring, so we have four ducks, as well as two cats, and my in-laws’ dog living with us.
Thank you to Andrea and David for sharing their stories and to Nathan for reaching out to find fellow riders participating in the event. Let’s all keep pedaling toward a cure!
Want to learn more about preparing for the Tour de Cure? Read “Gearing Up for the Tour de Cure With David Weingard” and “Biking for Health.”
