A meeting to determine interest for a local Parkinson's support group didn't garner much attention Monday at the Sister Kennedy Centre.
Marielle Henderson, the community development coordinator with Parkinson Canada, drove from Thunder Bay to help Tom Big George, whose mother suffers from Parkinson's, organize monthly meetings that would start in the fall.
Unfortunately, no one from the community came out to support their group.
Big George did mention some people he talked to indicated that they were shy to attend the organizational meeting.
“People are quite embarrassed to get out,” he said.
“It is one of the things that my mom goes through too.”
Henderson chimed in, agreeing that shyness isn't uncommon when trying to start up a support group.
“It's hard to get people out at first,” she said.
Henderson assured that people wouldn't be forced to talk about their experiences.
A way they make the group a more comfortable and inviting space is bringing in guest speakers.
“We get speakers to come in so that people can sit back and listen instead of talking about their own experiences,” added Henderson.
“It makes people feel more comfortable.”
Parkinson's is a disease of the central nervous system that results from the loss of cells in various parts of the brain.
This includes cells in the part of the brain that produce dopamine, a messenger responsible for transmitting signals which help coordinate movement.
People who suffer from this disease begin to lose control of their movement which causes slowness, impaired balance, stooped posture and rigid muscles.
There is currently no known cure for the disease.
Henderson works for Parkinson Canada, the leading non-profit research organization for Parkinson's.
They are based out of Toronto but have an office in Thunder Bay.
Henderson mentioned that it is often difficult to create support groups in small communities. The only Parkinson's support groups in northwestern Ontario are in Thunder Bay and Dryden.
“Up in northern communities it's hard to get support groups,” Henderson noted.
“It can be difficult in any town, small or large, due to the challenge of locating people with Parkinson disease.”
Big George was able to get in touch with the organization by calling the head office who redirected him to Henderson. They have been going back and forth for about a month now trying to plan a support group in Fort Frances.
Big George wanted to have a Parkinson's support group in town not just for his mother but so that others can get educated too.
He mentioned that he struggled to understand the disease at first.
“I've tried to understand what the disease is all about,” he explained.
“But it's a very complicated disease,” he added, but mentioned the Parkinson Canada website is a great resource with plenty of information.
In order to start their group, Henderson and Big George need a facilitator, someone to run and organize the meetings.
“We are looking for someone who is passionate about helping people, friendly and organized,” said Henderson.
“The main role of the facilitator is to communicate with myself to ensure the group is update with Parkinson news or important issues, as well as booking speakers or arranging the meetings to fit the groups needs.”
“I am there to guide the facilitator and definitely help out,” she assured.
If the group does gain enough interest, they will meet monthly in the fall.
“We don't have a date or a space yet, but [the next meeting] will definitely be in the next few months,” said Henderson.
“We typically need three members to start a group.”
“Once we have people interested we can finalize details,” she added.
If anyone is interested in planning the meetings, volunteering to facilitate or simply attending them contact Henderson at 1-800-565-3000.