This story comes from Aspirations Journalism, an initiative of The Patterson Foundation and Sarasota Herald-Tribune to inform, inspire, and engage the community to take action on issues related to Age-Friendly Sarasota, Suncoast Campaign for Grade-Level Reading, National Council on Aging and the Suncoast Nursing Action Coalition.
For most people, running, biking, dancing, and other physical activities are an important part of healthy living. But for people with Parkinson’s Disease, exercise is a vital part of maintaining balance, mobility, and other activities.
Research has repeatedly shown that Parkinson’s-specific flexibility exercises, aerobic activity, resistance training or strengthening exercises can improve many of the disease symptoms.
The importance of exercise is widely known among people with the disease and those around them, but the outside community has largely been left in the dark
“The community, even the medical community, isn’t aware of how crucial exercise is to prolonging progression,” said Robyn Faucy-Washington, the CEO of Neuro Challenge Foundation for Parkinson’s, a nonprofit in Sarasota dedicated to improving the quality of life of people with Parkinson’s and their caregivers. “Most people don’t understand.”
That’s partially why a team of national Parkinson’s specialists, physicians, caregivers, and about 1,800 others are gathering at the Bradenton Area Convention Center on Saturday for the second annual Parkinson’s Expo. The event is free and runs from 9 a.m. to 3 p.m.
It’s a chance to address a myriad of issues and concerns and talk about the latest medical findings and projections on a progressive nervous system disorder that impacts 10-million people worldwide.
Approximately 60,000 Americans are diagnosed with Parkinson’s every year. Six years ago, Patti Sylvia’s husband Carl was one of those people.
Shortly after Carl was diagnosed, the couple joined Rock Steady Boxing, a nonprofit gym dedicated to improving mobility through non-contact boxing.
Boxing is one of the most physically demanding styles of training.
"Because Parkinson’s causes a loss of agility, muscular endurance, balance, and hand-eye coordination, the sport is ideal for delaying symptoms because it emphasizes gross motor movement, balance, and range of motion," said Faucy-Washington.
In four years of training, Carl’s balance and strength improved. But the disease rapidly progressed and he was later diagnosed with dementia and now lives in an assisted living facility.
“It was really good while it lasted, but there is only so much you can do with Parkinson’s,” said Sylvia, 62, of Placida.
Shortly after Carl’s diagnosis, Sylvia joined the Neuro Challenge Foundation, where she found a community and support that helped her connect to other families and caregivers with similar stories.
Sylvia hopes that the event on Saturday will spread awareness about the disease and the often private struggles of caregivers. “People don’t understand how unfriendly the world is when you are living with someone with a disability. People roll their eyes and say ‘can’t you hurry him up’ when we’re out in public. Even close friends don’t understand.”