ALS walk set for Sept. 29
London Community News
Photo by Mallory Clarkson/London Community News/Twitter: @MalloryClarkson
“It is what it is,” Doug Clark spells on a message board held by his daughter-in-law when asked what life is like with the debilitating disease Amyotrophic Lateral Sclerosis (ALS).
While Doug has lost most of his ability to speak, his infectious laugh and sparkling eyes shine as his family sits around his living room, talking about ALS, also known as Lou Gehrig’s disease, and how it has impacted his family.
ALS is a disease constantly attacking the nervous system, causing paralysis, difficulty speaking and swallowing and a decline in breathing ability.
A person’s intellect and senses, however, remain unaffected.
There are currently about 2,500 to 3,000 people living with ALS in Canada and roughly 90 per cent will die three to five years after diagnosis.
ALS is a disease that affects the whole family as 90 per cent of care is administered by family caregivers and 40 per cent of families struggling with ALS live in poverty because of the hefty price tag associated with equipment and supplies.
The Clarks aren’t living in a worse case scenario, however, as the pair are retired and Judy, Doug’s wife and best friend, used to be a nurse.
“Judy had just retired from a full-time job of nursing where she actually cared for a couple of patients who had ALS, so she’s very familiar with the disease,” said Alynn Smith, Doug’s daughter-in-law. She added, as an outsider looking in, she feels Judy has lost out some of the best years of her life.
“I kind of feel she’s gone from what should be the glory years of retirement to still being a caregiver and doing what she did as an occupation,” Smith said, stressing the pair are more or less homebound.
“Doug and I are both retired, so we planned to travel, so that’s almost out of the question,” Judy added.
Charlene Spector, regional manager of Thames Valley/Grey Bruce regions of ALS Ontario, said the disease can at times bring families together, but it can also rip them apart.
“I don’t think people really know how it affects the families of the person with ALS. It’s like a family disease — physically, emotionally, financially,” she said. “Forty per cent of our clients are in poverty because of ALS, the equipment is expensive.”
Equipment and care costs average around $140,000 per person over the course of the disease — most of which isn’t covered by government funding or private insurance and must be paid for out of pocket.
ALS Ontario works to fill the financial and emotional gaps for more than 1,000 families annually through equipment loans, peer support and counselling groups.
Spector stressed one of the reasons raising money for ALS Ontario is so important is because the organization doesn’t receive any government funding and solely relies on donations and fundraising to offer clients the services they need.
Its biggest fundraiser — the walk — in London will be held Sept. 29 at Springbank Gardens (285 Wonderland Rd. S.).
This will be the eleventh year the London Walk for ALS is taking place in the Forest City. In total, there were 8,000 people in the province participating in the 28 walks that already took place.
Organizers are expecting approximately 700 participants for the London walk, where they’re also hoping to raise $167,000.
For more information on ALS Ontario, visit www.alsont.ca.
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