Jay Hardcastle, 76, of Carolina Forest developed tremors that got progressively worse over the past two years.
His balance deteriorated and in February he fell and broke his hip.
Cecil Borntrager, 63, of Fayetteville, N.C. recalls how his left hand stopped moving while he was washing his hair.
Another time when he was riding his motorcycle, his left fingers wouldn’t clasp the brake on the handlebar.
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Jim Newton, 70, of Garden City has memory and sleep issues, among other health concerns.
“His body doesn’t get the signals to move, and he must tell himself to move,” his wife, Donna, said. “It is more responsibility on the caretaker.”
These men and more than 40,000 other residents of North and South Carolina developed symptoms diagnosed as Parkinson’s disease.
People recall Michael J. Fox from television’s Family Ties and Spin City and the movie Back to the Future. Today they associate him with the Michael J. Fox Foundation for Parkinson’s Research.
Fox was diagnosed with Parkinson’s disease in 1991 when he was 29 years old. We heard of this disease when famous people, such as Fox, Muhammad Ali, former President George H.W. Bush and Linda Ronstadt announced their diagnoses, but the Parkinson Association of the Carolinas wants everyone to know:
▪ 1 million people in the U.S. have the disease
▪ 7-10 million people worldwide have it
“I’m definitely a card-carrying Parkinsonian,” says Tom Gantt, 74, of Calabash, N.C., who was diagnosed with Parkinson’s Disease in 2010. In February he took over as moderator of the support group at Our Lady Star of the Sea Catholic Church in North Myrtle Beach. He plans to learn the concerns and conditions of each of the 25-30 people who attend the meetings and hopes to help them enhance their lives.
“My focus is physical health of everyone so they can maximize what they can do, what they can afford to do and have fun with it,” he says. “I shag and plan to give a shag presentation with Sinatra-type music and slow dance. I box and will give a boxing demonstration.”
No definite cause is known for Parkinson’s Disease, but several medical professionals, including those at Johns Hopkins Hospital and Mayo Clinic, say brain cells that manufacture a chemical called dopamine in the “substantia nigra” area of the brain die off.
This chemical helps control muscle movement, which is affected in Parkinson’s Disease.
Gonzalo Revuelta, movement disorders specialist at Medical University of South Carolina in Charleston, explained at a recent symposium:
▪ less than 5 percent of Parkinson’s Disease patients have a genetic cause
▪ the risk for Parkinson’s Disease increases with age
▪ risk increases with pesticide exposure
▪ most Parkinson’s Disease patients are male
The disease is named after the English physician, James Parkinson, who in 1817 described it in Essay on the Shaking Palsy. Often the disease is misdiagnosed because of the host of possible symptoms. National Parkinson Foundation lists the most common early warning signs:
▪ tremor or shaking of limbs, chin, lips
▪ small handwriting
▪ loss of smell
▪ trouble sleeping
▪ trouble walking
▪ soft or low voice
▪ masked face
▪ dizziness or fainting
▪ stooping or hunching over
Among the symptoms Medical University of South Carolina includes are:
▪ slowness of movement
▪ impaired balance and coordination
▪ shuffling gait
▪ anxiety and depression
▪ cognitive impairment
There is no cure for Parkinson’s Disease Instead medications and therapies treat the symptoms. Dyskinesia, a distortion of voluntary movements, often occurs as a side effect from long-term use of levodopa or other medications. It is necessary to get a medical diagnosis to confirm Parkinson’s Disease, ideally from a neurologist specializing in movement disorders.
Alexander Tressor of Spartanburg says he was a ballet and jazz dancer in New York when he was diagnosed 10 years ago at age 47. He has developed and markets videos on Parkinson’s Disease “[Parkinson’s Disease patients] don’t have an alternative except for meds,” he says. “Parkinson’s can be kept at bay through exercise. If you can move, you can exercise.”
He recommends patients read food labels, eat fresh vegetables and avoid sodas and sweeteners. “If you can’t say it, don’t consume it,” he says.
“Exercise is the key,” says Beverly McGovern of Longs, whose late husband was diagnosed in 2010 and passed away in 2015.
“Almost all doctors say, ‘Exercise. Exercise. Exercise.” She explains that she and Joseph didn’t know anything about Parkinson’s Disease, but she researched the topic and the couple founded the support group at Our Lady Star of the Sea Church in 2013.
Larry Kanow, 68, of Ocean Isle Beach, N.C. works out on a NuStep every day and often walks in an indoor swimming pool. When he was diagnosed in 2006, “I was dragging my left leg. I had very slow motion. I couldn’t sleep. I had mask-face expressions,” he says. Medication has helped him, but he’s not the vibrant, energetic person he used to be.
“There are a lot of us out there, and there’s not a lot of support because neurologists have moved away,” he says.
Howard Respass of Carolina Shores, N.C. has organized a support group at Seaside United Methodist Church in Sunset Beach, N.C.
“Involuntary movement is one of my symptoms,” he says. “That tends to be a big problem.” Diagnosed in 2007 at age 46, he doesn’t need assistance, but he encourages caregivers to attend the meetings. “They may not have the disease, but they have to live with it,” he says. He plans to provide information and to have people share their experiences. “Once you start a topic, the whole room gets energized,” he says.
“Understand that no two people are the same with the disease,” he adds. “Meds have side effects. Colds, the flu, a toothache go away. A bad knee can be fixed. With Parkinson’s, you don’t die of it. You die with it.”
DEEP BRAIN STIMULATION
One treatment that is available but not recommended for everyone is deep brain stimulation, an operation that MUSC has performed for the past 15 years. Revuelta explained DBS does not help with cognition.
“I had no pain, no problem with recovery,” said Gary Doig of Conway, 63, who had the procedure in 2015. “It’s been a fantastic journey.” A musician and hockey player, Doig had to suspend those activities when he develop Parkinson’s Disease eight years ago. Since the operation, he resumed playing the drums and does recreational ice skating and hockey. [DBS] changed my life,” he said.
Jim Newton had the surgery 6 years ago. “It actually turned back the clock for him,” Donna said.
Nancy Whitfield of Ocean Isle Beach, N.C., had the operation a year ago at Stanford University Health System in California.
“I either had to have brain surgery or my life was over the way I knew it,” she said.
One of my favorite things to do was dance. It’s one of the hardest things to do now──sit and watch others dancing.
“One of my favorite things to do was dance,” she adds. “It’s one of the hardest things to do now──sit and watch others dancing.”
All procedures from her memoir, Broken Places, benefit the Michael J. Fox Foundation. “I’ve always enjoyed life,” she says.
“[Parkinson’s Disease] makes me aware of what people with any illness go through. My life is still fun. I enjoy being content in the moment.”
Broken Places, A Memoir
by Nancy Whitfield. All proceeds benefit Michael J. Fox Foundation Parkinson’s Treatment by Michael S. Okun, M.D.
Noon, second Wednesday each month, Seaside United Methodist Church, 1300 Seaside Road, Sunset Beach, N.C., moderator, Howard Respass, email@example.com, 703-638-3396
7 p.m. second Thursday each month, NHC HealthCare, 9405 Frontage Road, Murrells Inlet, moderator, Donna Newton, firstname.lastname@example.org, 357-2306
2 p.m. third Wednesday each month | Our Lady Star of the Sea Catholic Church, 1100 8th Avenue N, North Myrtle Beach, moderator, Tom Gantt,email@example.com, 301-938-9843