“Three letters that will change your life forever: ALS.
“And that’s what it does,” says Donald C Watt, world-class snow carver and walk coordinator for the Whitehorse Walk for ALS.
ALS: Three letters that carry with them a death sentence.
Most of us do not know how we’re going to die. We wouldn’t want to. But, with ALS, Watt says, “You know what you’re going to die of, and you know that it’s going to be fairly soon.”
Watt’s dedication to the walk began at a young age. As a boy, Watt watched a National Film Board documentary on snow carving. Afterwards, Watt says that his father, George Watt, told him, “Donald, you can do anything you want.”
Donald believed him.
Then George Watt died just six months after being diagnosed with ALS.
Watt’s passion for raising money for the dreaded disease is understandable. And he says he has put his organizational skills, as a snow carver, to good use in organizing the second Walk for ALS.
Watt was inspired to organize last year’s walk when he heard about the plight of a young woman, a forestry worker, in Whitehorse, with ALS, who asked why there wasn’t a walk. Thalina Tchulokovsky did not live to see the first walk, which was dedicated to her.
Watt is all seriousness. There is not even a hint of a smile around his grey-blue eyes; no upward curve of his untamed salt-and-pepper moustache. There’s nothing to smile about as he divulges the devastating impact of this neurodegenerative disease.
“The hardest thing about ALS [amyotrophic lateral sclerosis, a.k.a. Lou Gehrig’s disease] is that it disintegrates the body, but not the mind …
“Friends shy away.
“Medical expenses go through the roof …”
There is the anticipation of a “but” contained within his last pause.
Although unspoken, here it is: “That’s where the ALS Society comes in,” Watt says, explaining that 60 per cent of funds that are raised go toward purchasing medical equipment – walkers or canes, wheelchairs, oxygen equipment, 24-hour care – while 40 per cent is used to pursue prevention and, ultimately, a cure.
“Last year we raised $7,000.
“I’m hoping we’ll raise $10,000 this year.”
Last year, approximately 60 walkers participated in the “dog-friendly” event.
But aside from raising money, Watt plans to raise awareness and to help “those who are caught up in this”, to live a more dignified life.
He believes things are beginning to happen. “Now,” he says, “if we could just isolate the problem and find the cure.”
Where is hope found in the midst of this?
Watt says he finds hope in the stories of the amazing people he has met … people living with ALS – “People,” he says, “who are not handicapped by the biggest handicap of all.”
One of these people – Len – will speak before the walk on Sunday, Sept. 26 at Shipyards Park. Registration will take place at noon and the walk will commence at 1 p.m.
“What I really want” [the longest pause, yet, sustained perhaps for emphasis, or perhaps so that Watt can steel himself to continue what seems, naturally, to be an emotional appeal] “is for friends and family, kids and dogs … to listen to Len, then have a short walk … and help us find a cure.”