To begin with, I have always cycled – well, at least since I was introduced to cycle touring as a kid by my reluctant sister who needed company on a cycling vacation and had no better alternatives. Since then, my sister and I have taken dozens of trips together throughout North America, Europe and Asia.

Things changed when I was first diagnosed with Young Onset Parkinson’s Disease. Though I am now a settled and happy cyclist, it was a journey of stages to get back here. This is a description of my stages.

I stopped cycling:

As many will know, a PD diagnosis occurs well after the actual onset of the disease, once dopamine deprivation is pronounced enough to noticeably impact physical functions. By the time of the diagnosis, I was lethargic, slow, unmotivated, prone to muscular cramps, and now saddened by my dark prognosis.

Riding became a chore that I was apt to avoid. I still went to spin class, but it lost its purpose and was no longer fun. I fell out of my cycling habit – many habits, in fact.

I may have stayed this way, but I read a book that got me thinking. I cycled to save myself:

In The Brain’s Way of Healing, Dr. Norman Doidge recounts the story of John Pepper, a man who manages his PD by transferring repetitive tasks (such as walking) from autonomic to conscious control. It got me thinking about what I might do – in addition to medication - to help manage my symptoms. I started walking everywhere: to work and back each day, on errands, out with my family. It felt great to be doing something. Each day, I would track how long it took me to walk to work, and I would try to beat my best time.

Despite my best efforts, I could not master conscious muscular control. However, something interesting happened; it awoke an awareness of the benefits of intense exercise. I started to get hungry for athletics; competitive; motivated; fulfilled. I no longer cycled, I raced. I felt triumphant, like I was engaged in battle, fighting to save the elements of my life that I cherished. I adopted the mantra: “I cannot outrun Parkinson’s, but maybe I can out-cycle it.”

I began to feel stronger and less afflicted, and an encounter with a friend changed that concern into a new motivation.

I cycle to help others:

I watched as a friend struggled a bit with a maneuver during a PD fitness program, and she gave up. I convinced her that her difficulties were balance related, not strength. She was scared to try, but we reworked the maneuver so that falling was no longer an issue. To her surprise she was instantly successful. I saw that fear was such a crippler of people living with PD, but that it could be managed. I started to focus on that – looking for signs of unwarranted fear, and assisting with encouragement and support. I found that people responded well and, when appropriately motivated, they could find their extra gear. Even better, I saw that it made them happy.

I took this idea and set up the Rigid Riders team with my friend Mike Loghrin. We were actively looking for reluctant cyclists who had the ability to cycle, but were held back by unwarranted fear. Our pitch was: if we eliminate the real threats to injury, would you give it a try We formed a team and entered a fundraising event in Canada, called Pedaling for Parkinsons. We wanted a team name to reflect our attitude of defiance in the face of hardship, so we call ourselves the "Rigid Riders", which is an irreverent taunt to a menacing PD symptom of muscle rigidity. To hammer the point home, our slogan is "We go hard”.

We did go hard in our training last Spring, practicing skills and building endurance. And then, on a warm and sunny day last July, our team of 30 - half with PD and half family and supporters - started a 40km ride together. Everyone completed the route and, in doing so, they did something that most thought they couldn't - even themselves. Better still, many now consider themselves to be cyclists, and have continued riding. We made this an annual program, and we are now in our 5th year.

I am back to my love of cycling, and now I have company. Go Rigid Riders.

Steve Iseman (UK) biking team.
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Ideas and opinions expressed in this post reflect that of the author(s) solely. They do not necessarily reflect the opinions or positions of the World Parkinson Coalition®