From The Blog
Shared Experiences, Connections Lead to New Parkinson’s Support Group
While walking his dog last year, Seabrook Island resident Floyd DeAndrade noticed his foot dragging. The endurance-sport athlete, who at 77looks closer to 60, thought it might be a back issue, but heeded his wife Susan’s advice to see his doctor, which led to a referral to a neurologist specializing in movement disorders.
After a detailed exam in which he performed simple tasks to assess the agility of arms, legs, muscle tone, gait and balance, Floyd learned that he had Parkinson’s Disease (PD).
PD is a progressive disorder of the nervous system that can affect movement and cognitive function. Dying neurons cause a loss of dopamine which sends messages to the part of the brain that controls movement and coordination. It can often come with alterations in memory, attention and thinking– not dementia, but easily mistaken for it. An estimated 10 million people worldwide live with PD, 1 million in the United States. It strikes50% more men than women, and the average age of onset is 60.
Floyd’s reaction to his diagnosis was immediate action. “PD comes with a curtain, the perception that we must hide from our disease, or that others are afraid of it. I’m open about it to set an example that you can take control to slow the disease’s progression and enjoy a better quality of life.”
Through this openness, Floyd has connected with other members of the Kiawah and Seabrook communities who share his diagnosis, as well as their care partners. One of those members is Former Kiawah Mayor Bill Wert. Bill’s PD manifested in balance issues, a stiffening of facial muscles, softening of voice, and motor impairment primarily on one side of his body. While initially dismissing early symptoms as part of the natural aging process, with the encouragement of wife Pat, Bill too sought an assessment which led to his diagnosis. Like Floyd, he took action, working with both physical, occupational and speech therapists to halt the symptoms and even restore abilities.
Partners in Care
Parkinson’s is a family disease; those with PD are challenged by changes to life as they knew it, isolation, depression and anxiety. Their care partners – in many cases their spouse, adult child or grandchild – face their own challenges. They, too, experience loss of control, helplessness and fear for the future. They are also juggling:
• Helping maintain their loved
one’s quality of life.
• Educating themselves about
symptoms, treatments, and
the progression of the disease.
• Keeping track of
appointments, medication schedules, exercise and diet.
• Providing the love and support necessary to meet the
challenges of living with PD.
“Care Partners – I prefer that term over caregiver because we truly are partners in managing this disease – have unique responsibilities,” says Pat. “It helps to talk with others, to share lessons learned, victories, challenges and resources. There is a wealth of information available from resources like the National Parkinson’s Foundation, the Michael J.Fox Foundation, the Davis Phinney Foundation, locally at MUSC, seminars, books and websites – much of it free – which those managing on their own may not realize.”
The Werts and DeAndrades connected through openness and self-education. Over time they met other Kiawah and Seabrook islanders living with PD. Those connections have led to the formation of the Sea Islands Parkinson’s Support Group, associated with the Charleston Chapter of the National Parkinson’s Foundation. Having a group nearby will make support more accessible so that more can take advantage of help.
Floyd says, “You shouldn’t feel guilt or shame about your diagnosis. You can have a good life. In this peer group, you’ll have a place to be open, to learn, or to just listen. There will never be pressure to share information. Your privacy will be respected.” The Sea Islands Parkinson’s Support Group (SIPS) will meet monthly, with the first session scheduled for Thursday, April28, at 2 p.m. at Church of Our Saviour, 4416 Betsy Kerrison Parkway, Johns Island. Future meeting dates will be added to the KICA online event calendar (kica.us/events) as they become available.
To learn more about PD, view a more detailed version of this article at kiawahcares.org, or contact Floyd at [email protected]