'YOU GET TO MEET WITH PEOPLE WHO ARE IN YOUR SITUATION'

SUPPORT GROUP RAISING AWARENESS OF PARKINSON'S DISEASE

Parkinson's Disease doesn't need to result in isolation, or be a source of embarrassment.

"It was two or three years before I said anything, other than to family," said Dwight Bryan, a member of the Wasaga Beach Parkinson's Support Group. "There are people out there who will never come to a meeting because they're embarrassed, or whatever. I can appreciate that, but it's wrong, because you need to talk to people."

April is Parkinson's Awareness Month, and after nearly three years of being online, the support group wants to get the word out that in-person meetings are back — as well as raise awareness about the neurodegenerative disease.

The group was formed in 2018, after Brian McGrath was approached by a friend to help form a support group.

That's when he found out there were seven other people on his street who had Parkinson's.

"It was really prevalent, right here," said McGrath, who was diagnosed in 2010.

Parkinson's results from the dying off of cells that produce dopamine — a chemical that carries signals between the nerves in the brain. As the cells die off, the symptoms experienced include unintended or uncontrollable movements, stiffness, and difficulty with balance and coordination.

It is treated with a medication called Levadopa, though there are surgical options such as deep brain stimulation. Exercise has also proven vital to helping control the disease

Parkinson's affects about one in 400 people over the age of 60, and one in 100 in people aged 70.

McGrath witnessed what his sister went through when she was diagnosed at the age of 40. She died at 70.

"It is very embarrassing at times, but as Dwight says, it's better to explain to people why you have a shaky hand," he said.

During the pandemic, members were able to access webinars and other resources on Parkinson Canada's website at Parkinson.ca.

"Support groups, and the volunteers who make them possible, play a significant role in supporting Canadians impacted by Parkinson's," said Alison Li, Interim director, Programs and Services at Parkinson Canada. "Whether subject specific (such as young onset or care partners) or more general, support groups provide a safe environment for people to connect and share with each other how to live well with Parkinson's because a full life is still possible.

"No matter what stage of the Parkinson's journey someone is on, we encourage them to connect with us to find out what resources are available."

"It helps us with ideas of what we should be doing and shouldn't be doing," Bryan said. "But one of the nicest features is you get to meet with people who are in your situation."

The goal is to educate, and support, both those with the disease, and their caregivers, McGrath said. A section of the agenda is set aside for a "healing circle," which allows participants to talk about what's on their mind, or what questions they have.

Group facilitator Philip Bender said those with the disease can feel anxiety and depression, as the "unsureness" one feels with their body's movements translates into a psychological level as well as a physical one.

He learned that it's OK to ask for help.

"It took me a while to accept help," Bender said. "At first I said, 'thank you very much but I'm trying to do as much as I can on my own'.

"But now I will accept the help, because it's good for me, and it's good for them."

The group meets on the first Thursday of each month, from 12:30 to 2 p.m., in the meeting room at the Wasaga Beach Public Library (120 Glenwood Dr.). For more information, call Bender at 905-703-6248 or email bender.philip@gmail.com.

STORY BEHIND THE STORY: Simcoe.com spoke with members of a the Parkinson support group to understand the impact of the disease, and how the group supports those who have been diagnosed with it.