Hearing you’ve been diagnosed with Parkinson disease can be a devastating and demoralizing blow. Just hearing the name of the disease can crowd out all your other thoughts and leave you feeling alone.
“So many people have been diagnosed with Parkinson disease—they meet with their neurologist and they have their 15 minutes, and then they go away knowing nothing about Parkinson disease,” says Sherry Bower-Gagne, client service coordinator with Parkinson Association of Alberta.
“It’s like they get hit with that diagnosis and then there’s no listening after that, because it’s such an impact,” she said. “So they go home and they feel like their life has come to an end.”
Bower-Gagne works from the Parkinson Association’s Lloydminster field office. She says there is information and programming available that can help people get over the shock of diagnosis and get back to living well.
“There’s so many things we can teach them so they can improve their quality of life, and they can actually do a lot to help with their symptoms,” she said.
Much of the teaching doesn’t come from the provincial association’s resources, but from other people who are living with Parkinson’s themselves. Bower-Gagne says the information shared at support groups is immensely valuable.
Participants in the support groups share their experiences with the disease and their own innovations for dealing with the symptoms. The information is obviously helpful, Bower-Gagne says, but the groups also offer the kind of morale boost that can only come from knowing you’re not alone.
“That’s the crazy thing about it,” she said. “I know a fellow who says, ‘You know, ever since I was diagnosed, people treat me like I’ve got leprosy.’
“And then he started joining our support groups and our exercise groups and things like that. It wasn’t all of a sudden, but his sense of humour started to come back. And he doesn’t miss a meeting. Any opportunity he has to get together with his peers, he’s there. So it really brings that quality of life back for some, for sure.”
The association offers peer groups, exercise groups, widows’ groups, sessions on dealing with grief and loss, and more. The groups may be run in-person or online; there are even more resources on the Parkinson Association of Alberta website; and the organization publishes Pulse, a quarterly magazine full of information and tips.
A support group meets bimonthly at the Neighbourhood Inn in Bonnyville. The next meeting is Tuesday, June 20.
Bower-Gagne says it’s impossible to overstate how valuable the group participants’ collective experience is. Parkinson disease may present a combination of different symptoms that differ from one person to another. By having many people’s experiences to draw from, chances are you will find someone who has dealt with a problem you may otherwise feel you are facing alone.
“Basically all of them have something in common, and that’s Parkinson disease. But there’s so many different symptoms,” she said. “You’re going to find all kinds of different combinations of it. And it’s interesting because they always learn something new from each other.”
She tells of a client who had experienced a symptom known as “burning mouth”—something Bower-Gagne had never heard of. But another person offered some tips that had worked for him.
“And then I’m up in Grand Prairie two weeks later, and one of my clients up there is talking about burning mouth because he’s just thinking nobody else has ever experienced this. And now we know three people who’ve experienced it,” she said.
“They can brainstorm about what things help for them. And it can be types of wheelchairs, or shoes that work really well, or sheets that you can put on your bed. They’re always teaching us, too. It’s so valuable when we talk to other people and we can say, ‘well, you know, I was talking to this person the other day and they found that this works.’”
Parkinson Association of Alberta has locations in Edmonton and Calgary, and field offices throughout the province. Programs and support groups are run either in-person or through Zoom; they also do home visits.
“We can meet with individuals for coffee because we do one on one support as well, helping people navigate some of the hurdles,” Bower-Gagne said.
Any difficult diagnosis, including Parkinson’s, can be an isolating experience. Bower-Gagne says the Parkinson Association and its local groups can help people overcome that.
“You think that you’re the first person to have to deal with this, and then you find out that you’re not—and that there is a community of like people,” she said. “And then you find out that you know what, it’s not the end of your life. It’s not.”
For more information, visit the Parkinson Association of Alberta website at parkinsonassociation.ca, or call their toll-free number 1-800-561-1911.
To learn more about what is available in our area, you can reach Sherry Bower-Gagne at (780) 808-5006, email sbower-gagne@parkinsonassociation.ca.
