Multiple sclerosis is the most common neurological disease affecting young people – most often diagnosed during a person’s prime career and family rearing years.
While the MS society of Canada raises funds for research, there is often little help for day-to-day issues.
Enter the Reaching Out Multiple Sclerosis Society (ROMSS), which has provided service since 1990 and whose motto is “Helping people locally.”
“When I arrived in Salmon Arm three years ago, I thought this was the MS Society, but it’s not,” says ROMSS president Gary Gagnon. “This leads me to think a lot of people who give money to MS Society of Canada think they’re giving to us but that’s not the case.”
Gagnon says he has nothing against the MS Society, but points out ROMSS does not get any funding from them.
“We do not raise funds for the same reason, so we’re trying distinguish ourselves from them,” he says, noting ROMSS has designed a new logo in an attempt to make people aware of the differences between the two societies.
Relying on community generosity, ROMSS raises funds to buy scooters, wheelchairs and other equipment MS sufferers need to cope every day.
Gagnon and half the members of the ROMSS board have MS.
They know full well how the disease complicates mobility and denies many the activities they once enjoyed.
Gagnon was diagnosed in 2004 at the age of 49, after falling a few times while running – one of his favourite activities.
“That’s why I got curious about what was going on,” he says, noting the disease has affected his left leg and arm. “I am still able to drive, and if I use a cane I can walk short distances, but I can’t write anymore because I’m left-handed.”
Gagnon says that, like most other people with MS, he suffers from fatigue, and misses activities he once took for granted.
“You have to put your energies into the things you can do, and I guess this is part of it for me,” he says, looking around the ROMSS office, which is located in the alleyway beside Pharmasave. “Even with these disabilities, you have to try to do what you can.”
Board member Kelly Karczewski was diagnosed in 2008, with much the same symptoms as Gagnon.
Approaching the half-century mark, Karczewski suffers from fatigue, balance and mobility issues and is on a disability pension. He is no longer able to garden or build and renovate houses.
“That’s something I used to do as well, and I can no longer hold a hammer,” he says. “I could never afford a scooter, so I came here and ROMSS provided me with one right away.”
Karczewski says the scooter not only gave him the freedom of mobility, it inspired him to join the board.
Reaching Out has 80 members but is serving some 20 on a regular basis.
Helping with mobility issues can be a costly business. As well as Karczewski’s $4,000 scooter, ROMSS recently bought Debra McDonald a $5,600 standing frame.
Scooters cost between $2,000 and $4,000 and ROMSS has a small inventory of them and power wheelchairs that they loan. They are often acquired when people bequeath them and ROMSS has them inspected to make sure they’re in good working order.
ROMSS also works with an occupational therapist and last year participated in an annual bike rodeo organized by the RCMP in order to teach users how to use their scooters properly and, just as importantly, learn the rules of the sidewalk and the road.
Organizers are hoping to do it again next year, this time as a fundraiser for the society.
Two other major ROMSS Fundraisers include a Christmas gift-wrapping serve at the Mall at Piccadilly and a spring dance, held at the Fifth Avenue Seniors Activity Centre.
“Volunteers would be greatly appreciated,” says Gagnon. “One problem we have is that a lot of the people on the board can’t do the physical organizing.”
As well as supplying a wealth of information, the ROMSS office is open 10 a.m. to 2 p.m. Wednesdays and Fridays.
“The main reason the office is open os so people can drop in, have a coffee and chat,” says Gagnon. “It’s one of the better things we do, to give people an opportunity to get together and openly share any problems they have, or just talk about whatever.”
As well, a coffee group meets once a month at Chester’s House of Cinnamon in the Mall at Piccadilly.
Anyone who would like more information or make a donation to the local society, can call 250-803-0109.