YOU SAID IT
Disease also can have impact on caregivers, says Parkinson Canada ambassador
“WHEN I WALK INTO THE HOUSE, I AM TREATED LIKE ‘MOM,’ WHICH IS SO REFRESHING, BECAUSE I HAVE TWO TEENAGE GIRLS WHO HAVE GROWN UP LEARNING THE HARD WAY ABOUT THIS DISEASE.”
— Jackie Landry talking about Parkinson’s disease.
If there’s a typical image that comes to mind when many people think of Parkinson’s disease, the reality of Parkinson’s goes well beyond that picture, says the founder of a support group for people affected by the disease.
“(There is) this common myth that it’s just the tremor,” said Jackie Landry. “It goes far beyond the tremor. It goes beyond the face. It’s so much deeper than that.”
Landry is head facilitator of the tri-county Parkinson’s support group she founded in the fall of 2016. She recalls starting out with five people. The group has grown to about 50, including those with Parkinson’s and caregivers.
How Parkinson’s affects people – what symptoms they may have, etc. – can vary from person to person.
“It progresses fast in some, slow in others,” Landry said. “It’s usually slow. By the time it’s diagnosed, it’s usually progressed enough that it’s somewhat noticeable.”
Landry, a 42- year- old from Amirault’s Hill, was diagnosed in 2014, although the disease was traced back to her teen years.
That Parkinson’s can affect people of all ages was driven home by the case of New Brunswick youngster Keegan Campbell, the world’s youngest diagnosed Parkinson’s patient. Now four years old, he was just two when the diagnosis was made.
“Every time I talk about him I get emotional,” Landry said, adding her support group is looking at what it can do to support Keegan.
Landry knows all too well how Parkinson’s can affect every aspect of one’s life and she doesn’t want Keegan – or any other young person – to face that kind of future, which is why she hopes researchers will find a cure.
“Parkinson’s is a very long and cruel disease,” Landry said in an interview during Parkinson’s Awareness Month, which is marked each April.
She also refers to Parkinson’s as an “isolating disease,” a description that can apply not only to those with the disease but also to the people around them, hence the emphasis this year on recognizing families and caregivers.
Landry – one of Parkinson Canada’s ambassadors in Nova Scotia – is grateful for how supportive her family has been, citing her girls as an example.
“When I walk into the house, I am treated like ‘mom,’ which is so refreshing, because I have two teenage girls who have grown up learning the hard way about this disease,” she said.
Parkinson’s can be a financial strain too, given things like medication costs and the fact that people with the disease may be unable to work. Landry, for instance, no longer teaches.
As for the tri-county Parkinson’s support group, members say it’s good to be able to talk to others who are affected by the disease.
Etta Belliveau, one of the group’s co- facilitators, recalls struggling to find information on Parkinson’s. Joining the group has helped a great deal, she said.
“The group has meant everything and then some to me,” said Belliveau, an East Pubnico resident.
Celinda Balser, another co-facilitator, said the support group has been “amazing,” giving participants a chance to hear and learn from the experiences of others, including Parkinson’s patients like herself, as well as caregivers.
“We connect, we talk, we help each other,” said Balser, who lives in Bear River.
The group meets the last Thursday of the month, from 6 to 7 p.m., in the Sobeys community room in Yarmouth.
And while the group has grown considerably from the five people it began with less than two years ago, Landry and her co-facilitators say they know there are many more people in the tri-counties who are affected by Parkinson’s.
Despite the challenges of living with Parkinson’s disease, Landry tries to view it in a positive light, saying it has given her a chance to assist others on their Parkinson’s journey.
“I’ve met so many people that I never would have met before,” she said. “I want to help people.”