Hope for Parkinson’s patients

Copied from The Northwest Parkinson’s Foundation Weekly News Update

Tim Freed

Winter Park Observer - Until eight months ago, Robert McRainey had never been cycling in his life. The bike that he bought 25 years ago had remained untouched, and was beginning to collect dust in the garage of his Casselberry home.

Today, McRainey finds himself on a bike at least three times a week, taking a spinning class and riding outdoors whenever he can. While some cyclists take classes to improve their endurance or lose weight, McRainey and the 20 other participants in his spinning class are after something else: a better quality of life with Parkinson’s disease.

Cyclist Roy Roden came to the Crosby YMCA Wellness Center in Winter Park last Wednesday to share the story of his 4,500 mile ride across the U.S. with Parkinson’s disease, an inspiration to McRainey and the other members of the center’s Pedaling for Parkinson’s Program – a stationary cycling class founded on research showing a reduction in symptoms by pedaling a bicycle.

After receiving the surgery for Deep Brain Stimulation (DBS), an electronic device that enables the brain to control movement better, Roden set off on his journey with his wife Lynn from Seattle, Wash., in November. Three months later they arrived in Florida, making a stop in Orlando to speak at the Crosby YMCA before arriving at his final destination in Miami.

“It’s awe-inspiring to see him get his life back, do the DBS and let everybody know that the DBS is working. It’s an option that people should look at,” said McRainey, who was diagnosed with Parkinson’s two years ago. “With him pedaling across the U.S. like that, we would never think that we could do something like that, and the fact that he’s doing it just gives us something to shoot for. Maybe not at quite that level, but we have the ability; all we have to do is go for it.”

As Roden continues his journey toward Miami and a better life with Parkinson’s disease, the members of the Pedaling for Parkinson’s Program continue on their own journey as well, gaining small victories every time they sit on the bike.

“I see people come in and they can hardly get on the bike,” said Howie Apple, a Parkinson’s patient and co-instructor of the spinning class. “By doing it enough times, they develop the skills to even get on the bike.”

“If you get on the bike and do five minutes and then get off, the important thing is to come back. The real issue is to start people off where they are and to improve from there with their own baseline.”

The Pedaling for Parkinson’s program began in 2012 when Apple found research conducted by the Cleveland Clinic showing that up to 35 percent of symptoms were reduced when Parkinson’s patients rode a bicycle, optimally at a rate of 80 to 90 revolutions per minute. Apple approached the Crosby YMCA about a program, and in June of that year, the first group of members began the classes.

McRainey has started to see success with his own symptoms. Before the cycling classes, he often felt fatigued due to his medication, and was forced to take three naps every day. After eight months of classes though, he has now gone down to only one nap every other day. McRainey also mentioned that his depression, a common symptom of Parkinson’s disease, too has dwindled.

“I think it’s amazing. I think everyone is entitled to have the best quality of life that’s available to them so they can be more active in the community,” said Brittany Dixson, the medical fitness coordinator for the Crosby YMCA Wellness Center. “The fact the research backs up what they’re doing is even better. The research already shows that there’s going to be benefits to this, so if they keep going for it, they can hopefully reap all of the benefits that this cycling class will give them.”

Apple, his wife Debbie and co-instructor Terri Callanan are currently monitoring the progress of the program’s members, and plan to submit statistics such as heart rate, time spent riding and average cadence to an institution to prove the effectiveness of cycling, and to show the improvement of the riders.

With the Pedaling for Parkinson’s Program at the Crosby Center being the only program of its kind in Central Florida, Apple also hopes that it will expand to other locations, giving more Parkinson’s patients an opportunity to come together against the disease.

“It means so much to face down the giant, the fact that you’re having to deal with this disease, which is degenerative as time goes on,” McRainey said. “A lot of people may want to give up.”

“The camaraderie by being involved with other folks that are facing the same problem, where you become a community in itself, is just amazing. It’s the difference between night and day as far as that goes.”