By Jill Sperling

Living with ALS: Kamloops family speaks out about daily challenges

Jun 16, 2017 | 12:30 PM

KAMLOOPS — ALS, also known as Lou Gehrig’s disease, is a debilitating neurological disease that currently affects around 3,000 Canadians. 

The disease prevents the brain from communicating with the body’s muscles, and eventually inhibits speech and movement. 

ALS is devastating for both the patient and their family, with 80 per cent of people live with the disease likely to die within two to five years. 

The Keating family is trying to come to terms with the realities of ALS, as they take care of father, grandfather, and husband Rob. 

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“It’s a 24-hours-a-day job,” said Rob’s wife, Marilyn Keating. “You’re at his beck and call because he can’t do anything, anything you take for granted as a daily routine, he can’t do any of that.”

Rob was diagnosed with ALS in September 2015. Shortly after, the avid outdoorsman, fishing enthusiast, and golfer began to lose mobility in his arms and legs, and was no longer able to take care of his own needs.

“It was mostly on his left side to start with,” Marilyn said, “and then it progressed to the right side, so by last summer he wasn’t able to feed himself anymore.”

Rob’s speech is also affected. 

There is currently no cure for the disease, however, according to the ALS Society of Canada, there have been significant research gains in recent years. 

That is credited, in part, to the ALS Ice Bucket Challenge, which created global awareness and raised around $20 million for ALS research. 

“People came to terms with a lot of it with the ALS Ice Bucket Challenge,” Marilyn said. “People were more understanding and aware of what was going on, but I don’t think they understand the degree of the disease itself: what it does to the body, and what it does to your family.”

The Keatings have purchases a chair lift for Rob to go up and down the stairs, and some rooms in the home have been modified. 

Rob receives home care through Interior Health, and the ALS Society of BC has donated medical equipment to help the family cope with daily struggles. 

“The motorized wheelchair we’ve purchased through insurance, my work insurance and his work insurance,” Marilyn said, “and the ALS Society has helped us out as well (to) purchase that. So we will donate that to them when we are finished with it, for other people to use down the road.” 

With no cure for ALS, the Keatings are trying to make peace with an inevitable outcome.

“It’s one of the hardest things I think I’ve ever had to deal with, knowing that you’re fighting a battle that you’re never going to win.”

Annual ALS awareness walk set for Saturday

Hundreds of people are expected to participate this weekend in the annual ALS Society walk starting at Riverside Park.

Last year, a record turnout for the Kamloops event, and organizers are hoping this 8th annual walk will result in an even larger participation.

Wendy Toyer, ALS Society Executive Director, says there were 419 walkers last year, raising $37,000 towards research and support for those suffering from the disease.

She says the annual walk is the signature event across the country to raise awareness and funds for those impacted with the debiliating disease.

The Kamloops walk takes place tomorrow, with check in at 9:00 AM at Riverside Park adjacent to the bandshell.

The 5 kilometer walk itself gets underway at 10:00 AM.