Being active helps Parkinson's patients remain optimistic


Frank Puleo rides a Harley. He was a helicopter pilot for the Rhode Island National Guard and later in life provided care to premature babies.

Jeffrey Bartsch is an eighth grade teacher at a Beverly, Mass school. He’s taken up boxing and works at staying physically fit.

Donna D’Ordine, 64, is confined to a wheelchair, but she’s out there and moving.

They all have Parkinson’s disease, but that didn’t stop them from participating in the 20th annual Parkinson’s Optimism Walk and 5K Saturday at Goddard Park. They were hardly alone as family, friends and scores of others diagnosed with the disease for which there is no known cure turned out in an effort raising $80,000 for the Rhode Island Chapter of the American Parkinson’s Disease Association. The money all stays in Rhode Island and will go to help people with the disease whether it is to pay for a walker, wheelchair, acupuncture, respite care and countless other expenses that relate to helping someone and their family cope with the disease. About 2,000 Rhode Islanders have been diagnosed with Parkinson’s.

As the name of Saturday’s event implies, Mary Ellen Thibodeau, the only paid staff member of the Rhode Island chapter, is upbeat by developments concerning Parkinson’s, although there appears to be no medical breakthrough on the horizon. A registered nurse at Kent Hospital who has run the Parkinson’s Center at Kent Hospital for 12 years, Thibodeau is enthused by what she’s seen. It’s all about being active.

“We keep them moving, lively; we make them move,” she said.

The activity takes many forms, from dancing and yoga to pedaling, kayaking and boxing. Boxing has been one of the breakthroughs with as many as 135 Parkinson’s patients working out at the Parkinson’s Center in Pawtucket.

Puleo was diagnosed seven years ago.

“The tremors are a pain in the neck,” he says with a laugh over the pun. He dismisses further discussion of his condition, “other than that life’s normal” adding, “The more active you are the better you feel. You can’t let it get you down.”

Puleo was there to do the walk, which started shortly after outgoing chapter president Athol Cochrane sounded an air horn sending a wave of people from the park beach parking lot under the footbridge to the carousel and into the park. More than 100 runners, both those with and without Parkinson’s, were sent off more than an hour earlier. They were back at the carousel waiting to learn how they had finished.

Bartsch was one of them. Sweat spotted his t-shirt, but otherwise he looked rested. He said the weather was ideal for running, cooler than it had been in the past week and overcast. It worked for him. He placed first among male Parkinson’s runners. He said keeping physically active has helped him deal with the disease. He’s given up bicycling, finding it potentially dangerous, and taken up stationary rowing.

Jessica Burns was one of the many who doesn’t have the disease but was engaged in making the event a success. She is one of 19 on Team YOPD (Young Onset Parkinson’s Disease) who helped raise more than $10,000 for the cause. She became involved because her father, Joseph Burns, has Parkinson’s. She has found people “incredibly generous,” raising most of the money through social media.

Thibodeau finds herself blessed by those involved in the work of the chapter. She said there is purpose and consensus to their work. And she is constantly amazed by optimism of those with the disease. She said she could be reached at 736-1046. She said she is there to help anyone with Parkinson’s.


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