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Bill Wilson, Who Has Parkinson's Disease, is an Advocate for Greater Awareness and More Research
- Jun 05 2013
By Charlie Patton
When retired University of North Florida statistics professor Bill Wilson was first diagnosed with Parkinson's disease in the spring of 2006, his initial reaction was to hide his condition.
"For the first three years, I never told anybody," Wilson said. "There's a certain amount of stigma attached."
Life with Parkinson's, a chronic and progressive disease of the central nervous system, is filled with small indignities, he noted.
He has trouble getting dressed, especially with buttoning his shirt. He sometimes can't get his wallet out of his pants pocket. Eating can be a problem.
"You shouldn't eat anything you don't want in your lap," he said. "Parkinson's can make you look kind of silly. You do lose your dignity."
But as he learned more about the disease, his attitude changed. He accepted his condition and began seeking out more information. He joined a support group, which made him "aware that people want to know about the disease even if they don't want people to know they have it."
Now he's become a research advocate for the Parkinson's Disease Foundation, having gone through a training course at Stone Mountain, Ga. His role now is "to train people about Parkinson's" and "get people involved in clinical trials."
There has been a surge in the amount of Parkinson's research in the last decade as celebrities such as Michael J. Fox and Muhammad Ali, who have Parkinson's, have brought more attention to the disease, Wilson said. Fox will have a new show on NBC this fall in which he'll play a former newscaster who retired because of Parkinson's but decides to go back to work.
Despite the increased attention, 80 percent of clinical trials are delayed at least a month because of lack of participants and 35 percent of research studies are never finished because subjects can't be found, Wilson said. He's involved in two trials, one being conducted by the Mayo Clinic and the other by the University of Washington in connection with the Veterans Affairs Department.
Wilson has also started a quarterly First Coast Parkinson's Disease Newsletter. In April, which is Parkinson's disease awareness month, he organized "A Conversation with Experts about Parkinson's Disease" at UNF, during which researchers and caregivers explored 10 topics for an audience of 90 people.
He estimated that about 4,000 people in Northeast Florida have Parkinson's.
"But they are not showing up at support groups and are not getting the education I think they should," he said.
Parkinson's in its early stages can be difficult to diagnose, especially because of the wide variety of symptoms that can but don't always accompany the disease.
Wilson's early symptoms included difficult walking - "people noticed my gait" - and talking - "I couldn't make people hear me."
But it took about six months and visits to several different specialists before he was diagnosed by physicians at the Mayo Clinic.
Wilson's mother was diagnosed with Parkinson's in the early 1970s. At the time, he was told Parkinson's was not hereditary. That turned out not to be true. About six months after Wilson was diagnosed, his older brother was also diagnosed with Parkinson's.
Among the motor symptoms that are associated with Parkinson's are slowness of movement, muscle stiffness, tremors, impaired balance, loss of fine motor control and shuffling gait. It can also cause sleep disturbances, mood changes, digestive problems, fatigue, tingling in the hands and feet, sexual or urinary problems, fainting or dizziness, excessive sweating and forgetfulness.
Modern treatments can be effective at managing the early motor symptoms of the disease, mainly through the use of levodopa and dopamine. Surgery and deep brain stimulation have been used to reduce motor symptoms in severe cases where drugs are ineffective.
Wilson said that besides medication, the thing that helps him most is exercise. He goes to the gym five days a week, working on his upper body, his balance and his flexibility. He also plays golf regularly.
Source Date: Jun 05 2013
Source Publication: The Mayport Mirror
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