Brothers David, left, and Eric Arsenault share a house in St. Edward. A stove is all the separates David’s bedroom area from the kitchen of the two-story home. Community members are coming to the aid of the brothers who are struggling with the affects of SMA. A benefit will be held for them September 11 in Palmer Road.
Confined to a wheelchair for the past six years, David, 60, has been making do with this rather “public” sleeping compartment since moving back to P.E.I. last year. He uses a homemade lift to transfer in and out of bed.
For now, his 61-year-old brother is still able to use an upstairs bedroom but it is a question of how much longer. Getting upstairs is a struggle and he sometimes has to stop on the way to rest. He moves backwards going downstairs.
The brothers are afflicted with Spinal Muscular Atrophy (SMA), a disease affecting motor nerve cells in the spinal cord and robbing them of physical strength.
David said he started to feel the effects of the disease in his late teens but was not diagnosed for another decade or so.
“Everything just got harder to do,” he said.
He worked at factory jobs in Ontario but his deteriorating strength impacted his long-term employment.
Eric said he was well into his 30s before he started feeling any effects. A chef who has worked at resorts across Canada, including a stint at the Rodd Mill River Resort, he said he was able to remain quite active for many years. Gradually, though, SMA started affecting him more and more and he finally got the same diagnosis as his brother in 1990. He is still able to walk, but relies on a motorized wheelchair if going any distance.
The brothers now occupy their grandparents’ house. Their parents, Allan and Audrey Arsenault had lived there until about a year ago but moved out because they required a single level.
Neighbours, however, recognize the brothers’ needs are increasing and they’re taking steps to help find them some assistance.
A GoFundMe account has been set up, and a benefit night for the brothers has been set for Sunday, Sept. 11, at 7 p.m., at the Palmer Road Centre.
A fundraising committee, headed up by Phyllis Gaudet, Betty Perry and Stella, Alice, Bernadette and Molly Gallant is homing to come up with the money to build an extension to the house to accommodate two main-level bedrooms and a washroom at the rear of the house.
“Something has to be done,” said committee member Phyllis Gaudet. “As a community we decided to get together (to help out).
Anyone wishing to donate to the benefit, or material or time for the building project, is encouraged to call 902-882-3089, 2987 or 2094.
The brothers indicated they appreciate the community’s support.
The brothers were also recently presented with Gloria Ellsworth’s wheelchair accessible van after she obtained a newer model. They admitted the van gives them renewed independence, as they are able to get out and about any time they have a driver.
They recently took a drive to North Cape and back travelling both shores. It was the first tour David has had of western P.E.I. in about a decade.
