‘Science can happen anywhere’: RAGBRAI discovery leads to breakthrough for Parkinson’s research
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.