April is Parkinson’s Awareness Month, a time to put a spotlight on a condition affecting more than 110,000 Canadians and their families. Most are over 65 but James Caldwell, the manager of government relations at Parkinson’s Canada, said that isn’t always the case.
“It’s called early-onset Parkinson’s,” Caldwell said. “I think the most famous case is Michael J. Fox who was diagnosed, I believe, at 29.”
Caldwell said Parkinson’s Canada tries to raise awareness about the broad range of people who live with the disease.
“Parkinson’s doesn’t discriminate on age or race or whatever demographic you have,” Caldwell said. “Parkinson’s does impact people from all walks of life.”
John Denman leads a Parkinson’s support group in Halifax. He said there have been cases of Parkinson’s in people as young as eight years old in the U.K.
Denman was diagnosed with essential tremors in 2016, but a surgeon recommended a neural consult in 2019 when he noticed his handwriting got smaller as he went across the page. The doctor told him it was a direct symptom of Parkinson’s. He was diagnosed after seeing a neurologist later that year.
“I had some symptoms as early as 2011,” he said.
Parkinson’s affects people in different ways and some have anxiety and depression years before Parkinson’s makes an onset, Denman said. He said some of the younger people try to hide their symptoms because they don’t want to lose their jobs.
“Employers don’t understand the disease,” he said. “In fact, an awful lot of people don’t understand the disease, including many in the medical profession.”
Denman said having a good neurologist is a tremendous help, but a lot of people get prescriptions when they are diagnosed and wait months to see the correct specialists.
“No information,” Denman said. “I’ve dealt with a number of people on the front lines of the support group who are scared. They don’t know and they can’t find out.”
Denman said the support group helps people get information their doctors don’t have from people living with Parkinson’s and experiencing similar symptoms.
Caldwell said it’s uplifting to see people like Denman take leadership roles in a community which needs peer support.
“We are a community. The Parkinson’s community in Canada,” Caldwell said.
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