Amyotrophic Lateral Sclerosis (ALS) is a disease which progresses differently in everyone but always ends the same: the loss of voluntary movement leaving a person paralyzed.
“What happens with ALS is your voluntary muscles cease working but your heart remains strong so you’re just trapped in a body,” said Susan Hanson, one of the coordinators of the annual Okeover-Powell River Walk for ALS which this year takes place on Saturday, April 14. “Your cognitive abilities aren’t affected, just your movement. You can be totally paralyzed and fully aware.”
For the sixth year in a row, the walk will raise money for the ALS Society of BC in hopes of finding a cure.
ALS is a form of motor neuron disease. It is a relatively rare disease and those who have it often don’t know anyone else who does. That is why Danielle Lessor from the society started a support group in Powell River.
“We had five people at the support group who have ALS,” she said of the first group meeting in March. She estimated the number of ALS patients in Powell River to be about six, maybe more.
“It’s high per capita for a town this size. There are apparently, according to some of the people in the group, a couple of others that don’t want to be a part of a group. It’s quite significant I think for such a small area.”
Approximately 3,000 Canadians live with ALS. Hanson said the support group is much more than peer support. It makes patients aware of services provided by the society.
“It’s to let them know what services ALS BC can offer because a lot of people don’t know they can get equipment through ALS BC.”
Home health and various therapies are provided by the society as well. Patients are also provided a place to stay at Easter Seal House when they travel to Vancouver to see specialists. Lessor said it was apparent at the support group meeting how much these services help patients.
“When our [director of patient services] talked to this group and all the things the [society] does and the look of relief on some peoples’ faces...One of the gentlemen has a difficult time mobilizing. He stopped going to Vancouver where the specialists are because he doesn’t have the energy. That alleviated so much stress.”
Hanson said it is estimated that it costs $405,000 to fully care for an individual patient with ALS as the illness progresses. That includes things like wheelchairs, lifts and breathing equipment. It is why Lessor calls the support group “a sense of community within a larger community.” She said anyone interested in attending the support group can call her at 604.485.0201.
A large proportion of the funds supporting the society and research for a cure comes from the annual ALS walk. Frankie Kellner, fellow walk coordinator, said they hope to raise $20,000 in Powell River this year. “The slogan is dream big, so we’re dreaming big,” she said. “Powell River is unbelievably supportive.” Over 100 people attended the walk last year and raised $16,000.
Hanson hopes to recruit more walkers. “We want to increase the number of walkers. We feel we’re getting closer to the cure. We have Grant Lawrence coming.” Lawrence, a CBC Radio 3 personality, wrote a book called Adventures in Solitude: what not to wear to a nude potluck and other stories from Desolation Sound.
The event kicks off at Laughing Oyster Restaurant on Malaspina Road with registration at 9 am and the walk starting at 10 am. A special benefit lunch will follow the walk and features a silent auction, draws and balloon bonanza, all held at the restaurant. Lunch costs $22 including tip and taxes with $6 being donated back to the walk proceeds.
Reservations must be made for those wishing to attend lunch. To make a lunch reservation, interested readers can contact Kellner at 604.483.2277 or Hanson at 604.414.0318.
