Community Voices: Bicycling with Multiple SclerosisWritten by Stacy Jurich | | firstname.lastname@example.org
June 29 and 30 is the 24th Annual Reeves Northrup Memorial MS Bike to the Bay, a fundraiser for the National Multiple Sclerosis Society. Robert Hannon and I, along with our other teammates on The Missing Link, will ride 75 miles each day for the cause. Robert was diagnosed with MS in 2008 yet he continues to ride strong, commuting daily to his job as a postal carrier and riding in his 12th Bike to the Bay. Robert is a co-founder of Toledo Bikes! (formerly Toledo City Bicycle Co-Op) and an encouraging and inspiring bicycle mentor to myself and many others.
SJ: You have told me stories about riding 140 miles from Kent to Toledo as a young adult. Is that when you really got into biking?
RH: I fell in love with bicycling when I was a young kid. We moved from Toledo to Kent, and when I was 17, I was riding 50 miles a day between Kent and Cleveland. Shortly after that, I decided I was ready to make the long ride to visit friends in Toledo. I really loved to hop on my bike and go without much preparation or forethought. When I think back on how far I would go without tubes or tires, just a pump and a patch kit, I’m kind of amazed I never got stuck anywhere. But I really liked traveling by bicycle.
SJ: People are always both intrigued and impressed by your recumbent bicycle. What made you start riding a recumbent and how is it custom designed to meet your MS needs?
RH: My first recumbent was homemade from scrap parts of other bicycles, with a child-size crank on left and full size on right because I had torn cartilage in my knee and didn’t have a full range of motion.
After getting diagnosed with MS, I was dealing with balance issues and a lack of sensation in my feet. I had been riding with clipped shoes, but I couldn’t feel if my feet were clipped or not. I couldn’t unclip when I started to lose balance so I’d fall. This was really upsetting because at the time I was head of the bicycle club in the Old West End and it was very difficult to face the fact that maybe I wouldn’t be able to do that anymore. After I realized it wasn’t getting better, I went to regular pedals and tennis shoes, but the shoes would slide off the pedal. After unsuccessful attempts, I got the idea of making wooden pads to fit my feet like a pair of gloves. This worked well because I could tell when my feet were on pedals and keep them there the whole time.
Living with MS really put a new spin on the phrase, “It’s like learning how to ride a bike,” because I really had to learn how to ride a bike again. I had to compensate for the non-normal sense of balance. Turning is second nature; you just do it, but I would have to actually think about what was involved in turning and plan my turn and think my lean. Everything became more calculated. After some time, I’m fortunately at the point where it’s almost second nature again.
SJ: How do you cope with MS and how does bicycling help?
RH: Coping and bicycling are very closely related. Being able to still bicycle is a great psychological boost because there is a tendency to become somewhat depressed or preoccupied with the illness and you don’t want the illness to be your life. Being able to ride almost as well as I ever have is really a powerful energizer. It’s self-esteem producing and mood-elevating just to be able to do it, and to be able to do it well is even more so. I firmly believe that still riding improves my balance and my strength and those two things together are tremendous help in keeping me able to work, which is also very important in self-esteem and not getting mired in the disease.
SJ: What is the hardest part of living with MS?
RH: One of the most difficult decisions I’ve ever made in my entire life was to start taking drug therapy. Becoming dependent on a drug to slow the course of the disease was a difficult choice for me. There are a lot of troubling symptoms like heat-related fatigue, numbness and tingling in extremities, decrease in cognitive function, all of those exist. Still the hardest thing was that decision, but the potential physical damage that I was already starting to have was more devastating that being on the drug.
SJ: How does Bike to the Bay help with the cause and help you personally?
RH: It’s the largest single fundraiser of the year for the National MS Society, which is the biggest funder of research and development for both treatment, assistive devices and search for a cure for MS. To put that in perspective, in 1994 there was only one FDA-approved treatment for the disease. A couple more came along shortly after but now there are at least seven FDA treatments on the market. I had to try several before I found something that worked and was tolerable for me and I know that’s the case for other people, too. The fact that we have choices now is a great relief and it makes living with the disease much more tolerable and productive. I also know people who have had help with the assistive devices for walking and even a device to swallow for a guy I know with nerve damage in his throat. MS society is the biggest funder of these things.
Personally, the ride is important to me with the treatment options it supports, the ability to participate, even after diagnosis, and to be able to help other people with the disease.