Imagine not being able to control your muscles and the movements of your body.
That is what it’s like living with Parkinson’s disease. Parkinson’s disease is a chronic, neurodegenerative disorder in which the loss of cells in various parts of the brain leaves people less able to control their movement.
That can make everyday life difficult.
But, Jay Alberts’ RAGBRAI experience in 2003 revealed a link between exercise and improved symptoms.
Alberts was riding a tandem bike in 2003 with Cathy Frazier of Atlanta. Frazier, a Parkinson’s patient, mentioned to Alberts that it didn’t feel like she had Parkinson’s when she was on the bike with him.
“At first, I thought that was because we’re eating pie and ice cream and the beautiful scenery of Iowa as opposed to Atlanta,” Alberts said. “Then other people started to comment on the same thing in terms of when they rode with me on the tandem, they didn’t feel these symptoms.”
What started as a RAGBRAI trip to raise awareness for Parkinson’s disease quickly turned into a learning experience for Alberts.
After that first RAGBRAI trip in 2003, Alberts began looking at the differences between regular cycling and riding on a tandem bike.
“What we see is on a tandem bike, the front and back person have to pedal at the same rate, because they’re mechanically linked,” Alberts said. “What we were finding is I’m pedaling 80 to 90 RPM, whereas a patient is usually pedaling 40 to 50 RPM. I was forcing them to pedal at a faster rate.”
Alberts, now with The Cleveland Clinic, is currently working on a randomized clinical trial involving 100 subjects — one of the largest exercise studies ever done.
“An interesting aspect is Parkinson’s disease is a disease that robs you of control. And really, what we’re doing with the exercise is trying to give patients some level of control back. That’s a really powerful thing for many of the patients,” Alberts said. “We came here in 2003 ... to let individuals know even when you’re diagnosed with this disease, it’s not a death sentence. It’s just the cards you’ve been dealt, and now you need to best figure out how to play that hand.”
Riding with Parkinson’s
When Alberts and his group pedaled into Creston Monday, his team included seven Parkinson’s patients participating in this year’s RAGBRAI event.
Nan Little of Seattle is participating in her sixth RAGBRAI this year.
“Preparing to ride for RAGBRAI has certainly helped with my symptoms,” she said. “The actual event is certainly a challenge, and it (preparing) gives me a lot of energy in the tank. It really is a challenge to ride RAGBRAI on a solo bike.”
Little was diagnosed with Parkinson’s disease in 2009 and started training between 1.5 and 4 hours per day, four to six times per week. Within one month, her symptoms had disappeared, she said.
The symptoms come back, but Little is able to keep her symptoms largely at bay by continuing to ride her bicycle.
“It helps over the longer term, but it also helps in the near term,” said Doug Little, Nan’s husband and caretaker. “If she’s having a bad day, I can just say, ‘Go get on your bike.’ It’s amazing how 10 minutes of biking can kind of help even things out.”
Mike Fahning of Minneapolis participated in his first RAGBRAI in 2014. At the time, he wasn’t noticing the benefits of riding his bike. It wasn’t until others pointed out his progress that he noticed it.
Fahning was suffering from severe dyskinesia or involuntary movements when his first RAGBRAI began. It was so bad, he hadn’t slept in 30 hours.
He was intimidated by his first day in 2014, since he had never ridden his bike as far as the 80-mile route for that day. But, after several days of riding on RAGBRAI, his fellow team members began telling him he looked like a totally different person than when it began.
“When you live with a disease for so long, sometimes your days run together; your symptoms run together,” Fahning said. “The progression is so slow, you don’t realize what the benefits are until someone tells you you’ve changed.”
Jon Carlin of Denver, who has ridden on RAGBRAI since 2009, has seen firsthand the benefits riding a bike has on his Parkinson’s symptoms.
After seeing those benefits, he went home and started Parkinson’s riding and spin classes at several YMCA facilities in the Denver area, where he now sees others reaping those benefits.
“It’s really fulfilling, because I’ve been able to gain the benefits of it and now I can see other people. We’ve seen people with dyskinesia (have it) go away,” Carlin said. “It forms a community for them. It’s like your kids when they first learn to drive or ride a bike. A lot of them will probably never get outside on a bike, but they come religiously to spin class.”
Alberts’ Pedaling for Parkinson’s team also creates a community. For Jeanette Holm of Kalamazoo, Michigan, it combines two things that are important in her life.
Holm was an avid cyclist before being diagnosed with Parkinson’s two years ago.
“I’m really happy to be a part of this (team) this year. It’s really exciting for me,” she said. “I like the fact I can talk to other people who also have Parkinson’s and who also enjoy cycling. Those are two things in my life that are important to me right now.”