A local man with Parkinson’s disease fears people will take the wrong message from the death of actor/comedian Robin Williams.
The man, who did not want his name used because of his employment situation, said people who have Parkinson’s, as well as depression, need to take up Williams’ torch of making others smile, and draw on the strength he showed during his lifetime, rather than dwell on his death.
Williams committed suicide last week and was newly diagnosed with Parkinson’s. The disease, according to Parkinson Society Newfoundland and Labrador, occurs when cells producing the chemical dopamine — which carries signals between nerves in the brain — die. Dopamine controls movement.
Symptoms include tremors, slowness and stiffness, impaired balance and rigidity of the muscles.
The local man said he understand’s why Williams — who also suffered from depression — may have dreaded the possible loss of his trademark smile to symptoms of Parkinson’s.
“Don’t lose hope because of it,” said the man, diagnosed with Parkinson’s four years ago. “Parkinson’s was just one more thing he had to deal with.
“He wouldn’t want us to be sad. He would want us to look at the good stuff.”
The man said people still perceive Parkinson’s as an old man’s disease and many people try to keep symptoms secret and don’t contact the Parkinson’s Society for help and advice.
“They figure it’s going to go away,” said the man, whose own tremors became obvious when a co-worker noticed him shaking as he drank from a cup, and when he tried to pour from a kettle for company in his home. When he wore down new work boots unevenly in a week, he sought medical help.
He said diet, exercise and laughter are huge aids in managing the disease, and he also learned that his medications can interact poorly with certain food.
They are also expensive — one new medication costs $250 a month and is not covered by health insurance.
Derek Staubitzer, executive director of the Parkinson Society Newfoundland and Labrador, estimates about 1,800 people in the province have Parkinson’s, but the organization has heard from only about 300.
He said while Williams’ death has brought awareness to the disease, it has created some confusion too.
For instance, Williams’ friend, comedian Rob Schneider, has been reported in the media suggesting Parkinson’s medication may have led Williams to suicide.
Staubitzer said the society has received calls from people with the disease who are concerned with that conjecture. But he pointed out that no two Parkinson’s patients have the same symptoms.
If someone is suicidal, or feels their medication is causing a side effect, they should talk to their doctor and get help, he said
Depression often appears in Parkinson’s patients years before they develop tremors, Staubitzer said, adding many find the depression more debilitating than the physical symptoms.
The society often gets calls from spouses and other caregivers about Parkinson’s sufferers who don’t want to do anything all day, and the situation can be stressful on family.
“When newly diagnosed, they may be experiencing an element of depression,” he said.
“They are often reluctant to reach out for help due to the stigma with mental-health issues and some of the reluctance to reach out because of Parkinson’s.”
But Staubitzer said there is help and support. The society sponsors a weekly exercise class, which allows people to connect with other Parkinson’s sufferers.
Emphasizing the message of hope, Staubitzer pointed out that 81-year-old British Columbia resident Dan McGuire, who has Parkinson’s, was due in St. John’s Tuesday after bicycling across the country on his own.
“I can’t wait for this guy to roll into town,” Staubitzer said, adding it’s uplifting news after the Williams tragedy.
The society is also working on starting a choir in the fall made up of Parkinson’s sufferers, as voice therapy helps.
Other major events scheduled include the annual super walk Sept. 7 at the Techniplex in Pleasantville. Details can be found at www.parkinsonsuperwalk.ca.
A gala fundraising event takes place on Friday, Oct. 10 at the Capital Hotel. The toll-free number for the society is 1-800-567-7020.