'Science can happen anywhere': RAGBRAI discovery leads to breakthrough for Parkinson's research
- 25 July, 2019
- Des Moines Register
WINTERSET, Ia. — Davis Phinney never let his nerves show on the bike.
That steely nature and competitive drive helped him win a bronze medal, two stages of the Tour de France, and the nickname “the cash register,” a nod to his penchant for taking purses.
A couple of decades removed from racing professionally, Phinney’s nerves still don’t show on the bike — but that has as much to do with new science as it does with his resolve.
Twenty years ago, Phinney was diagnosed with Parkinson’s disease. He was prescribed rest, which was both a difficult task for a man who has always been on the go and, as it would take him a few years to learn, the exact wrong remedy if he wanted to slow the disease’s progression.
A few years later and a few states away, Dr. Jay Alberts, of the Cleveland Clinic, was pedaling across Iowa on a tandem bike with Cathy, a Parkinson’s patient. The ride was mostly a publicity tour and the doctor’s attempt to bring attention to the need for more Parkinson’s research.
But somewhere between the beer tent and Mr. Pork Chop, he stumbled onto an important finding: Cathy’s physical abilities improved after a day of pedaling, and then improved more after another day.
That chance discovery was the spark to a groundbreaking study that would reverse the common practice of recommending repose for Parkinson’s patients. After hearing of Alberts’ conclusions, The Davis Phinney Foundation funded more of his research.
Now, Phinney and Alberts have come back to the Register’s Annual Great Bicycle Ride Across Iowa, the place where the spark was lit, to show that exercise is the cornerstone of living a better life with Parkinson’s. More broadly, Phinney adds, they want to bring Parkinson’s “out of the closet,” by exhibiting that a diagnosis isn’t a death sentence.
“There are few places where we can have the kind of impact that we have on RAGBRAI,” Phinney said. “Everyone who passes us will learn about Parkinson’s and hopefully come to understand it better.”
Input, output and his greatest challenge
In a Winterset hotel’s parking lot just off the route, 75 riders dressed in red, white and blue Evil Knievel jerseys gather for breakfast before setting out on the road from Winterset to Indianola.
Among the sea of daredevil lookalikes, Phinney is most definitely a star — in both the Parkinson’s and cycling communities. People want selfies or just to shake his hand.
Considering he was an Olympic athlete, I can’t stop thinking that this disease — one that slowly steals your movement — has to be particularly hard to deal with. So I ask him, “Do you feel like your body failed you?”
“I view it as a challenge, the greatest challenge of life,” he said. “At one time I was a real athlete and all that training — the preparing, the mindfulness, the advocating for self-care — I still use that today, but in a different way.”
The executive director of the Phinney Foundation, Polly Dawkins, jumps in. They like to think of a journey with Parkinson’s as a metaphor for endurance sports: The doctors are your coaches and, like coaches, they are responsible for your drills — just instead of burpees, their controlling pill requirements and sleep regimens.
“It’s still about how input contributes to output, and we know that micro-adjustments can change everything,” she said.
Science in the cornfields
As a long-time Parkinson’s researcher, Alberts knew exercise was important, but how important was driven home to him on RAGBRAI 2003. Pedaling on a tandem bike connected to Alberts (a fit guy), Cathy was forced to go at his speed (90 RPM), which was significantly faster than hers (80 RPM).
On the bike, Cathy didn’t feel as stiff, he noticed. She was pedaling faster, and her brain function was better. As she wrote postcards and mailed them to her family from across Iowa, her handwriting became more legible.
“It was a serendipitous discovery,” he said. “Science can happen anywhere, even in the cornfields of Iowa.”
“If I am stressed or stiff one day and I get on the bike, my entire body will feel better,” he said. “It’s like a brain hack.”
With his research that cycling can play an important role in treatment, Alberts is hoping more doctors will give out prescriptions for exercise, and more funding will be allocated for research on the connection between biking and better lives.
Through the partnership between Phinney and Alberts, more than 120 YMCAs across America have a Pedal for Parkinson’s program. And soon they hope to finalize a deal with Peloton to put 250 research bikes in the homes of Parkinson’s patients.
“Parkinson’s robs patients of control, and cycling helps them take it back,” Alberts said.
Blending in — even if it’s just on a bike
To put it simply: Phinney and Alberts want to change the conversation around Parkinson’s. They want people to know that small triumphs — slightly better hand-writing on a postcard home — can lead to bigger victories. They want people to get out of that closet.
Looking around the parking lot, I’m struck by how difficult it is to tell the difference between Parkinson’s patients and other riders. No one is watching for how stiff someone is walking or treating anyone with kid gloves.
My grandfather died from Parkinson’s just over three years ago and I can’t stop thinking about what he would be like if he were here. Would he be wearing that goofy jersey? Probably. He’d definitely be smiling.
Later Tuesday night, from the main stage of the Simpson College stadium, Phinney would be picked out of the crowd to watch a video of cycling greats paying homage to him and receive a proclamation from the governor thanking him for his work fighting Parkinson’s.
But for now, he was riding — Evil Knievel outfit on, complete with a kitschy cape in the wind — and smiling, just like everyone else.
6 Comments
Submit a Comment
You must be logged in to post a comment.
Related Articles
-
2 days agoIf you've registered for RAGBRAI LI - congratulations! You're in for a week of fun, riding some of the most scenic parts of rural...
-
3 days agoFrom time to time I receive an email from a RAGBRAI rider who asks some very basic questions which I may overlook or consider too...
-
6 days agoThis week on the JustGoBike Podcast! Murph chats with Erin and Matt about a fun event that doubles as a fundraiser for the...
It might be that sunshine also plays a beneficial role perhaps through production of nitric oxide. An interesting comparison blinded study would include a group riding indoor exercise bikes versus a group riding on Ragbrai.
In February last year, out of nowhere, my eyes became light sensitive, had slurred speech, my vocal cords seemed strained and my legs/hands began to shake uncontrollably, and I was diagnosed of PARKINSON DISEASE. I started out taking only Azilect, then Mirapex and sinemet as the disease progressed but didn’t help much. In July, I started on PARKINSON DISEASE TREATMENT PROTOCOL from Herbal Health Point (ww w. herbalhealthpoint. c om). One month into the treatment, I made a significant recovery. After I completed the recommended treatment, almost all my symptoms were gone, wonderful improvement with my movement and tremors . Its been 6 months since I completed the treatment, I live a better life..
My wife have been suffering from Parkinson’s disease (PD) for the last five years and she had constant pain, especially her limb. Then the inability to swallow without getting choked, soft speech and muscle rigidity. Thank God she have finally recovered after seven weeks of taking a Herbal medication, I feel so happy and excited to see my wife recover from PD very fast. She can talk very well and walk freely now. Here is herbal centre that helped my wife recover if you need their help; (besthealthherbalcentre. c om).
Around age 60 I noticed that my handwriting was getting smaller and I was writing faster. I also noticed a small tremor in my right hand. The doctor went over my different symptoms and he suspected I’d either had a small stroke or the beginnings of Parkinson ‘s disease. After finding a neurologist and some testing I was diagnosed with the beginning stages of Parkinson’s disease. That was 4 years ago. I took Sinimet four times a day to control my symptoms, which include falling, imbalance, gait problems, swallowing difficulties, and slurring of speech, A year ago, I began to do a lot of research and came across Rich Herbal Gardens (ww w. richherbalgardens. c om) and their Parkinson’s HERBAL TREATMENT. After seeing positive reviews from other patients, I quickly started on the treatment, I experienced significant reduction/decline in major symptoms, including tremors, muscle weakness, speech problems, difficulty swallowing, balance problems, chronic fatigue and others, The truth is you can get off the drugs and help yourself by trying natural methods, i live symptoms free.
PLEASE READ IS IMPORTANT.
WorldHerbsClinic Parkinson’s disease herbal FORMULA helped my dear husband. I feel so bad for him because this is a hard disease and he tried and tried and gets so frustrated. Over 2 months plus now maybe or so he has been taking this product and he is doing good. I see it happening too. He is happier and buttons his own shirts now. My husband is a good guy and we have been married for 51 years. This disease takes a person away slowly and it painful. But now my dear husband is more like himself again. He is more spry and has his wits about him. I think he is more sassy though, but I count all as good, as before he just really stopped talking. Now we talk again and I missed him so much. Thanks to World Herbs Clinic for this product. We don’t have much time left in this world and you have given us more time together. Thanks again. I hope this review works ok and that I do it right. I am not good on the computer.
My Wife was diagnosed with Parkinson’s disease when she was 52 years old 4 years ago. The levodopa did very little to help her. The medical team did even less. Her decline was rapid and devastating. It was muscle weakness at first, then her hands and tremors. Last year, a family friend told us about Natural Herbs Centre and their successful Parkinson’s Ayurveda TREATMENT, we visited their website www .naturalherbscentre .com and ordered their Parkinson’s Ayurveda protocol, i am happy to report the treatment effectively treated and reversed her Parkinson’s disease, most of her symptoms stopped, she is able to walk and her writing is becoming great, sleep well and exercise regularly., she is pretty active now