The Pursuit of Joy Juice: Cyclist and Hiker Edits the Script of Parkinson’s

I retired at the end of 2003, eager to enter Act III…except for the annoying, painfully persistent tremor in my right arm. When a movement disorder specialist diagnosed Parkinson’s disease (PD) in 2008, my life changed and my health took center stage. My new neurodegenerative disease script did not include the words “cure” or “happy ending.”

Although most people associate Parkinson’s with physical tremors and jerky movements, it has many non-motor symptoms that affect cognition and emotion as well. By the time movement symptoms show up, 50 to 80 percent of the substantia nigra (the part of the brain that produces dopamine) is dead. The disease affects other parts of the brain and the body, causing unpredictable emotions and scrambling executive functions. In some cases, dementia will surface. Day by day, hour by hour, we truly don’t know what will happen next. Linda Ronstadt, who was diagnosed in 2012, aptly referred to each day as “Mr. Toad’s Wild Ride.”

Enter Hope
Serendipitously, I learned that fast-paced cycling could possibly slow PD’s progression. In 2009, my husband and I were invited by neuroscientist Dr. Jay Alberts from the Cleveland Clinic to join the Pedaling For Parkinson’s team in the Des Moines Register’s Annual Great Bike Ride Across Iowa (RAGBRAI). Without thinking, I lept at the opportunity. I could turn my neck no more than 90 degrees. My right arm hung stiffly at my side. My hand clenched. I shuffled, hunched over, staring expressionlessly at the sidewalk. How could I ever ride 450 miles across Iowa?

But Dr. Alberts’ research showed that if people with Parkinson’s rode three hours each week at 80 to 90 revolutions per minute, keeping their heart rate at 60 to 85 percent of their maximum, their symptoms improved an average of 35 percent over just eight weeks. Worried about failing in Iowa, I committed to fast-paced cycling several hours nearly every day, far beyond what Alberts prescribed. Exactly a month later, while walking my dogs, I noticed both arms swinging freely. I extended both hands with no cramps; I turned my head more than 180 degrees with no pain. I walked gracefully, heel to toe. I smiled and cried. The dogs wagged their tails. That July, I crossed all of Iowa on my bike. I did it again the next year. Not only did my physical symptoms improve dramatically, cognition and emotions improved as well. I felt in charge of myself.

Action Beats Apathy
One of the most difficult barriers to overcome with Parkinson’s is apathy. With diagnosis we are given a script and are told we have no ability to change our lines. So why try? Pedaling For Parkinson’s, a program based in YMCAs and athletic facilities, provides an editing pen. By joining people who face similar challenges, we become part of a community based on actions that have proven results. Through sharing stories and strategies, we recognize that our symptoms are not unique and there are ways to cope. Contributions to the class and to each other are appreciated and celebrated. Each time a person reaches out and gives to another, their body responds by increasing production of dopamine, that joy juice of our brains.

No one ever looked at me and said “athlete,” and I had never climbed a mountain. But when I was asked if I would try to climb 19,340-foot Mt. Kilimanjaro with people who have multiple sclerosis or Parkinson’s disease, I quickly agreed—even though I was 65 and the only woman in the group with PD. On July 18, 2011, standing on the roof of Africa, cold and weary beyond belief, I cried again. It was more than a walk in a park at high elevation—physically, emotionally and intellectually—but since then I have climbed to Annapurna Base Camp in Nepal, and I’ve ascended the Inca Trail to Machu Picchu.

I still cycle most days, too. Cycling feels like plugging my brain into a wall socket. Can fast-paced cycling cure Parkinson’s disease? No. Will it help you like it helped me? Very likely. But because ours is a designer disease, every person’s version is different. Living with PD involves much more than mind over matter, and self-awareness. Self-efficacy means everything to people who have been sentenced to this slow, painful neurologic disintegration. Despite wishful thinking and serious intent, we must recognize our limitations and define our own mountains, even if our challenge is walking around the block.

However, consider if 10 percent of the estimated 1.5 million people with PD in the U.S. benefitted from the cycling regimen. (Another 50,000 to 60,000 people are diagnosed annually as the population ages.) The changes in lives and health care costs would be huge.

In July 2016, five years after Kilimanjaro, I rode my sixth RAGBRAI at age 70. Although I may not be aging with the confidence I had anticipated years ago, I am writing a positive script that is based on reality.

Nan Little is a cyclist, author, speaker, mountain climber, anthropologist, teacher, volunteer, flyfisherwoman, wife, mom, grandma, and friend. Since being diagnosed with Parkinson’s disease in 2008 at age 62, Nan has cycled across Iowa six times, climbed Mt. Kilimanjaro, trekked to Annapurna Base Camp, and hiked the Inca Trail in Peru.