Keeping Parkinson’s patients rolling

John Carlin credits Pedaling for Parkinson’s with saving his life.

Carlin connected with the nonprofit at a time when his Parkinson’s disease symptoms were worsening — tremors, deterioration of fine motor skills, softening of voice.

After he joined the Pedaling for Parkinson’s team in training for the Register’s Annual Great Bicycle Ride Across Iowa, he regained control of his body. His symptoms receded.

“Without Pedaling for Parkinson’s, I don’t know where I’d be,” Carlin said. “I was sinking fast.”

The development of a great idea

Pedaling for Parkinson’s was founded by Jay Alberts, who in 1994 graduated from Iowa State University with a bachelor’s degree in physical education — what would now be called kinesiology.

Alberts, who grew up in a small northwest Iowa town near Lake Okoboji, started his Pedaling for Parkinson’s RAGBRAI team in 2003 because he wanted to reach out to people in rural communities who suffered from the disease.

“We wanted to inspire them to take a more active role in their treatment and a more active role in life,” he said. “You don’t have to just sit back and be a passive recipient.”

Once Alberts began pedaling with Parkinson’s patients, he noticed some interesting and unexpected changes in them.

One year, Alberts rode on a tandem bike with a friend who had Parkinson’s disease. He discovered her handwriting, typically shaky due to the neurological issues cause by Parkinson’s, was perfect during the bike trip.

Another year, he rode for one leg of the tour on tandem with a man who began the day suffering from tremors. By the end of the day, the tremors were gone.

These observations drove Alberts to study the effect of exercise on Parkinson’s symptoms — particularly “forced” exercise, when a person is encouraged to work harder than normal, like on a tandem bike with a vigorous rider.

In 2007, Alberts and his colleagues sought funding for a study, but no one would take them seriously. The researchers didn’t give up. Eventually they cobbled together a preliminary study, and the results showed a positive relationship between forced exercise and a reduction of Parkinson’s symptoms.

Today, similar studies are being done at various institutions across the country as scientists hone and expand upon Alberts’ original research. Alberts has also partnered with several YMCAs across the country and given them license to set up their own Pedaling for Parkinson’s programs.

“It started in the cornfields, but I think we owe people with Parkinson’s to make it available everywhere,” Alberts said.

Studying Parkinson’s on a personal level

Philip Martin, professor and chair of kinesiology at Iowa State, has ridden RAGBRAI with Alberts and Carlin for the past several years. He’s deeply impressed by the growth of Pedaling for Parkinsons.

“It’s a great example of outreach,” Martin said.

Martin met Alberts in 1994, shortly after Alberts graduated from Iowa State’s undergraduate physical education program. Martin at the time worked at Arizona State University, where Alberts applied for graduate school.

Alberts is impressive because he doesn’t study Parkinson’s from behind a microscope, Martin said. Instead, he meets people on a personal level and works hard to understand the day-to-day effects of the disease.

“To really understand how it impacts people, you need to talk to people who have the disease,” Martin said. “He does that — and much more.”

Pedaling for Parkinson’s continues to grow. Alberts’ RAGBRAI team initially consisted of seven people. It now has around 70 team members, including Carlin.

Carlin has only missed one RAGBRAI tour since he started riding with the team in 2009 — and he missed it in order to climb Mount Kilimanjaro, a feat he believes was only possible due to the cycling work begun with Pedaling for Parkinson’s.

A neurologist diagnosed Carlin with Parkinson’s disease in 2002. He was only 44 years old and had three young children. He got help from doctors to try and manage the disease, but by 2009, all of his doctors had moved away and he was looking for someone new.

Carlin made an appointment at the Cleveland Clinic, where Alberts worked. When a neurologist there heard Carlin bicycled for exercise, he pointed Carlin in Alberts’ direction.

That same year, Carlin completed his first RAGBRAI tour. He’s now also working to start indoor Spinning for Parkinson’s classes at his local YMCA.

“I’ve worn out five bike seats since 2009,” Carlin said. “I’m a zealot when it comes to biking. It saved my life and it still continues to.”