ALS riders show their grit



MAYOR TEUNIS WESTBROEK addresses ALS patient and their supporters Thursday outside town hall. Neil Horner photo
By NEIL HORNER
News Reporter

Aug 03 2007


The diagnosis of ALS may be a death sentence, but that doesn’t mean people with it are helpless.

That truth was made abundantly clear last week when the 2007 On-a-Roll for ALS tour stopped off in Qualicum Beach.

ALS, or amyotrphic lateral sclerosis, or Lou Gherig’s Disease, is a major neurological disorder, the most common cause of neurological death in Canada.

In a bid to raise awareness and funds to deal with the disease, the On-A-Roll tour saw ALS patients relaying in their wheelchairs from Campbell River to Victoria.

The tour stopped Thursday at town hall and the participating rollers were greeted by supporters and Qualicum Beach Mayor Teunis Westbroek.

Speaking at the afternoon event, Gord Pearmain, a director for ALSBC, said even though they use power wheelchairs, the participants simply didn’t have the strength to travel the whole distance from Campbell River to Victoria this time around.

“The fact is it’s a death sentence when you’re diagnosed, but what’s worse is you lose a little bit of yourself every day,” he said. “You can feel it. Although they’re power wheelchairs, you lose muscle and strength in the limbs and digits, and as you lose muscle, you lose bulk, so staying warm becomes a consideration.”

As a result, he said the team started with one roller, and will continue picking up and dropping off rollers along the way until they reach Saanich, where the event ends up.

Pearmain said he finds it inspiring to see the bravery of those with ALS.

“It’s inspiring to see how graciously people with death deal with life,” he said. “Most of them are very positive people. They want to do as much as they can for themselves, and with events like this, they’re doing it for others.”

Fundraising for ALS, he said, is important, as even though there’s no cure, it’s not cheap to treat.

“We’ve figured out that to buy everything a patient needed would cost $135,000,” he said. “Who has that kind of money to spare?”

Pearmain said he would like to see ALS patients receive palliative care status as soon as they receive the diagnosis.

“That’s the one part of our health system that works beautifully,” he said. “As it is, some bureaucrat made an arbitrary decision that a doctor has to certify you are six weeks from death. That’s patently ridiculous.”

In his brief remarks to the approximately 30 people at the event, mayor Westbroek said he was impressed with their determination to roll to Victoria.

“I hope you get a lot of support and wish you strength, for you and your families, as you deal with this disease,” he said.

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