Cycling His Way Through Life With Parkinson’s: The Story of John Alexander

Samantha Felder avatar

by Samantha Felder |

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As Parkinson’s patients, we’re often told that we should exercise regularly. Exercise offers us many physical and mental health benefits and may help slow disease progression. A variety of exercise programs and classes have been designed specifically for Parkinson’s patients, ranging from boxing to tai chi to dancing. Talk with your doctors to determine which form of exercise would suit you best.

I was inspired to start biking again by my friend and fellow Parkinson’s patient John Alexander. John lives in Lake Mary, Florida, and has become an avid cyclist since his diagnosis. He even wrote a book called “The Journey Begins With 1,000 Miles: Thriving With Parkinson’s Disease Through Hope, Optimism, and Perseverance” about his biking adventures.

I recently connected with John via email to learn more about his story. Excerpts of our conversation follow, with light editing for clarity.

SF: When were you diagnosed? What were your first symptoms that led you to see a doctor?

JA: I was diagnosed with Parkinson’s on Jan. 6, 2010. A few months before, during a routine annual visit with my sleep doctor (for the treatment of sleep apnea), he noticed a tremor in my left hand. I thought that was due to a torn rotator cuff in my shoulder.

My primary care physician ordered an MRI of my brain and sent me to a neurologist. He gave his diagnosis based on his observation of my motor skills and my walking. I later learned that getting a diagnosis early on is often rare, but the sooner you know, the sooner you can begin treatment.

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Does anyone else in your family have Parkinson’s?

No one else in my family has Parkinson’s. However, my brother and several cousins have essential tremor.

How did the people around you respond to the news?

My wife and children (adults at the time of diagnosis) were concerned about several unknowns. Would I die from Parkinson’s? Would it affect my ability to work and provide for my family? As I learned more about Parkinson’s, I came to realize that many of those concerns [would be alleviated through] good medical care, exercise, and self-care.

You’re now an avid bike rider. Did you bike at all before your diagnosis?

I hadn’t ridden my bike in years. I signed up for a bike class called Cycling Savvy, which gave me the skills to ride whenever and wherever I wanted.

You then biked 1,000 miles in a year. How did you come up with that idea?

After the bike class, I began riding both on my own and with a group on a regular basis and kept track of the miles ridden. As the miles built up, I set a goal for riding 1,000 miles in one year — and achieved that goal.

What was the process of writing your book like?

It was a pleasure to share what I have learned about living well with Parkinson’s. Writing the book was also a creative outlet. I worked with a book coach named Amy Collette. She helped guide me through the process and handled the publishing details. I completed the book in six months — from my initial meeting with Amy to the publication date.

Tell us a little bit about your experience advocating for Parkinson’s patients.

I applied to serve as a delegate for the Michael J. Fox Foundation and the Parkinson’s Foundation to advocate for the needs of the Parkinson’s community on Capitol Hill in Washington, D.C. It is very rewarding and necessary work.

What advice would you give to newly diagnosed patients and others struggling with Parkinson’s?

One of the most trusted and best resources for people living with Parkinson’s and their care partners is the Davis Phinney Foundation. They can send out a checklist for newly diagnosed individuals.

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To read more about John, check out the story he shared as part of this site’s 30 Days of Parkinson’s initiative in April.


Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

Comments

Susie Rheault avatar

Susie Rheault

I was very heartened to hear your story of biking so much. I have PD and was diagnosed about six years ago. Prior to that I had been an avid cyclist and was putting on 25 to 50 miles a week. But the first time I got on my bicycle I fell off of it right away and then shortly thereafter I fell again at a four way intersection. My husband told me that I was a risk to myself and others and that I should only contemplate stationary biking. I have done a bit of that and find it excruciatingly boring.. I’d like to be in the out-of-doors and biking again. I am concerned about balance issues and sharing the road with cars. Can you give me any encouragement from your standpoint on these concerns? I am balancing better these days with the help of the right medication. I’m also dancing a couple of days a week and I would love to get back to biking even in a minor way. Thanks for any support you can offer, Susie

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jerry b ward avatar

jerry b ward

Get a Tacx trainer for your road bike and connect it to a laptop and monitor running the. ROUVY software. You can then ride routes all over the world . The trainer will increase the resistance with the inclines and you will neeeed to shift.
Better than outside with all the dangers

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Denise avatar

Denise

You should also dig into the life of David Heydrick, a neurologist who happened to get diagnosed with PD. He created a holistic treatment program called the Parkinsons' Pyramid that he presented at the Governor's Conference. It all stemmed from him taking a 50 mile tandem bike ride, and realizing his symptoms were minimized after the bike ride. Here's a clip from 2006: https://www.nbcnews.com/health/health-news/exercise-may-slow-parkinsons-downward-spiral-flna1c9466080

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