Exercise is a safeguard for people living with Parkinson’s disease, which is why the Parkinson’s Foundation launched “Moving Day” fundraising events throughout the U.S.
The fifth annual Moving Day Charleston takes over Edisto Hall at James Island County Park at 9 a.m. April 29.
“Movement is one of the best things that can combat Parkinson’s disease symptoms,” said Karson Terry of Columbia, development manager of the Carolinas chapter of the Parkinson’s Foundation.
The international organization hosts exercise-related “Moving Day” events across the nation to raise funds to help bring quality care to more people with Parkinson’s disease and further Parkinson’s research, education and outreach initiatives. The disease is a neurodegenerative disorder that affects dopamine-producing neurons. It is a diverse degenerative disease with varying symptoms, but in general it is marked by tremor, balance problems and stiffness.
“We’re doing one of the nation’s biggest genetic studies right now for Parkinson’s disease,” Terry told the Charleston City Paper. “We do everything that we can to not only increase research as far as trying to find a cure for Parkinson’s disease, but what makes us a little bit different from everybody else, is that we also want to be able to help people who are living with the disease right now.”
Parkinson’s is not strictly a movement disorder. Other symptoms include cognitive difficulty, anxiety and depression, impaired sleep, constipation, bladder symptoms, fatigue, pain, tingling and lightheadedness. Early signs of the disease include tremors, loss of smell, trouble sleeping, small handwriting, dizziness or fainting, a low or soft voice, and trouble moving or walking.
Living with Parkinson’s
Jay Phillips of Summerville was diagnosed with Parkinson’s 13 years ago when he was 61. Before retiring a few years ago, he was an accountant for a variety of different organizations, including public television.
“I’m fortunate to have had a milder version of the disease for an extended period of time, as for many people more severe symptoms set in around year five.” Phillips told the City Paper. “It’s a heterogeneous disease with a lot of variations. The combination of symptoms, the order in which symptoms appear and the severity are different from one person to another.”
Phillip said he started working with the Parkinson’s Foundation about 10 years ago. He attended research advocate training and has been involved with the Medical University of South Carolina (MUSC), recruiting people to take part in clinical trials and giving special care to those who become hospitalized with Parkinson’s. He’s also participated in peer reviews on a number of grant programs for Parkinson’s research, and he was the 2021 national volunteer of the year for the foundation.
For the past 10 years, Phillips has helped facilitate the Greater Charleston Parkinson’s Disease Support Group that meets every second Sunday at Roper Hospital in West Ashley from 2:30 p.m. to 4 p.m. He also leads a Parkinson’s support group in Summerville. (Contact the group at (843) 482-0254 with questions.)
Phillips said medicating the malady is complicated, and people over time tend to take what’s called a Parkinson’s cocktail of various medications as the disease progresses. Often there are side effects such as hallucinations or delusions. He said deep brain stimulation can be effective to help people reduce their medications over time.
“MUSC is a Parkinson’s Foundation Center of Excellence and has specialists in that disease,” Phillips said. “The problem with Parkinson’s is there are so many symptoms, and complications can arise. You really need to see someone who understands.”
Get moving
Terry said movement like walking and low impact boxing is very good for people with Parkinson’s. Rock Steady Boxing in West Ashley offers a program for those with the disease that can be helpful to hone fine motor skills. Phillips has been attending Rock Steady Boxing for the past several years.
The foundation recommends 2.5 hours of exercise a week, such as aerobic activity, strength training, agility-focused exercise and stretching.
“There’s no cure and drug therapies affect everybody differently,” Terry said, “so what works for one person might not work for another person. We know for a fact that low-impact movement helps everyone.”
Charleston Moving Day is a walking event that brings together people with Parkinson’s disease and their families and caregivers in solidarity. The James Island walk starts at 11 a.m. and is accessible to those who use wheelchairs or walk assistant devices. As of April 19, the foundation raised just over 75% of its $80,000 goal for Charleston Moving Day. You can donate on the website.
“Maybe your drug therapy isn’t working very well for you,” Terry said, “but you have this community here, be it in Charleston or any of our other locations where we do it, and we can make a difference together as long as we support each other.”
The funds go toward the foundation’s programs, resources and services such as the toll-free helpline at 1-800-4PD-INFO, free genetic testing and counseling, and community grants given to local businesses and organizations that benefit those with Parkinson’s disease, Terry said. For example, grants are allotted to agencies that want to provide a support group or exercise program.
“We give out grants every year,” Terry said, “and this past year just in the Carolinas we gave out grants totaling just over $127,500.”
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