‘No two patients are the same’: Patients share their experience during Parkinson’s awareness month

Parkinson’s is the world’s fastest growing neurological disease – and it does not discriminate.

Jon Denman has been living with Parkinson’s disease since 2019.

“No two patients at the same, a good physiotherapist once said to me.”

Denman, who is 74 years old, discovered his disease when he went for knee surgery the surgeon noticed his tremor and recommended a neurological consult.

“You sometimes see symptoms years before it’s actually diagnosed,” Denman explained. “Most of us are in the 60s and 70s when first diagnosed. Some of us are just over 40. This is more common.”

Parkinson Canada’s associate director of community outreach and engagement, Bryce Perry was one of those who didn’t realize Parkinson’s could affect people in the 30s and 40s.

“I was twitching and I thought, well, maybe I had too much coffee and it was stressed out,” Perry said. “Maybe, you know, there’s some other kind of thing going on with me.”

“We’re kind of like snowflakes. So, it has many different faces, and a lot of people don’t really understand that.”

Perry was 40 years old when he finally got diagnosed with Parkinson’s after he started seeing resting tremors on one side.

“It took me two years to get diagnosed,” he said. “There was two different neurologists but I kept going back because it was something not right. And so you have to really fight for yourself, and advocate for yourself to your doctor.”

It took a while for both Perry and Denman to get diagnosed with Parkinson’s, which is why they encourage people talk to their general practitioners about any new symptoms. They both say it’s important to remember that a Parkinson’s diagnosis is not a death sentence.

“A friend of mine had it diagnosed at the age of 74, and I’m 74,” said Denman, “I’ve known him over the years, and he was really angry. A lot of people get very angry and in denial.”

Perry said when he was diagnosed at 40, he thought he had five good years left. He wondered if he would walk his daughter down the aisle or see his kids graduate.

“I thought it was just kind of the end of everything. And now, it’s 15 years later.”

Perry said he’s seen his body slow down, but he listens to it and accommodates. He said there are measures, like exercise that can help slow down the process.

Denman said it’s about having a strong network of good people around him.

“If you can, having a carer or partner, is incredibly important,” he said. “I’m very lucky to have my love with me, going on 45 years and she worries about me more than I do.

Denman helps run support zoom calls for patients with Parkinson’s to give them an outlet and remind them they are not alone. He said it isn’t easy to always be positive so he tries to have a sense of humour about everything.

“I can scrambled eggs faster then Gordon Ramsay,” he said.

“It can be very frustrating, so it’s tough to maintain a positive attitude all the time. But do you see someone who has it worse than you, and you think about how you can help, and what you can do.”