Every story different for those dealing with Parkinson’s disease
Published 12:00 am Wednesday, April 6, 2016
By Mark Wineka
SALISBURY — Dr. Yogi Patel says his personal story with Parkinson’s disease began in 2001, when he noticed he was dragging his leg.
He saw an orthopedist, then a neurologist, and it seemed to take 15,000 tests, Patel said, before a doctor at Duke University told him he had the early symptoms of Parkinson’s disease, a progressive neurological disorder.
About a million people in the United States have the disease.
Patel was 38 at the time of his diagnosis. His marriage was failing, he had three young children, and his medical practice was facing a lawsuit.
“It was very emotional,” said Patel, an internist who had to give up his clinical work about five years ago and his administrative duties about three years ago.
Patel was guest speaker Tuesday during the monthly meeting of the Parkinson’s of Rowan County support group.
“Some people call this a support group,” President Deirdre Blabon said. “To me, it’s a life group.”
April is Parkinson’s Disease Awareness Month, and one thing Patel stressed and the local group always emphasizes is there are many faces, young and old, to the disorder and a multitude of ways it presents itself.
“Not every Parkinson’s patient is the same,” Patel said.
Many people associate Parkinson’s with shaking or tremors.
But some of the other motor symptoms can include Bradykinesia, or locking up while attempting to walk; a low voice volume or muffled speech; loss of smell; lack of facial expression; stiffness and rigidity in the limbs; trouble with balance; a stooped posture; or decreased ability to swallow.
Plenty of non-motor symptoms can occur, too, such as anxiety, depression, constipation, dementia, hallucinations, sleep disturbances, sexual and urinary dysfunction and impulse control disorders.
Patel said he went through a period with a gambling compulsion caused by his Parkinson’s.
“I lost more than I won, let’s put it that way,” he said.
As a doctor, when he finally decided to address his Parkinson’s, Patel said he needed to find a medical answer, which proved to be difficult. Parkinson’s was first identified 200 years ago, and in the two centuries since, no definitive cause or cure has been found.
Now it ranks second only to Alzheimer’s disease as a neurodegenerative condition, Patel said.
Doctors know the disorder is associated with the loss of dopamine-generating cells in the brain, and there are quite a few drugs, on the market for years, which have been prescribed.
Parkinson’s patients need their medications at the same time of day, every day, and it’s dangerous for them to skip or postpone doses.
While his disease has progressed over 15 years, Patel said he has been helped by Deep Brain Stimulation surgery about two years ago, though it’s not necessarily the answer for everyone with Parkinson’s.
“I can tell you personally it has made a big difference for me,” Patel said.
Before the DBS surgery, Patel said he often would lock up during his morning walk from bed to the bathroom. Those freezing moments have stopped, and Patel says he can now walk a half-mile to a mile, as long as he can go at his own pace.
He said the DBS also has helped in controlling his tremors.
As a doctor and seeing what advances have occurred in the search for cures for other diseases, Patel said he is a bit discouraged at research efforts behind Parkinson’s disease. Too much of the funding for research has been diverted toward treatment and not finding the cause and cure, Patel said.
He also blamed a money-hungry pharmaceutical industry for holding back efforts at finding a cure.
“It’s a little cynical,” he said of his opinion.
Blabon said a large contingent of Rowan Countians — 28 already have signed up — plan to participate in Saturday morning’s “Unity Walk” for Parkinson’s in Charlotte.
The group will be wearing their own Rowan T-shirts, the sales of which led to a $225 contribution toward Parkinson’s research. The Hurley Family YMCA is furnishing a bus for the Charlotte trip.
The Rowan group meets every first Tuesday of a month at First Presbyterian Church in Salisbury. But Tuesday’s meeting was held at the YMCA, which has become a strong partner for the group, along with Novant Health.
There is a YMCA exercise group for people with Parkinson’s at 10 a.m. Mondays and Wednesdays.
Contact Mark Wineka at 704-797-4263.