Living with ALS: Shuswap man pursues his bucket list

By Tanya Cronin
June 12, 2018 - 3:03pm Updated: June 12, 2018 - 5:33pm

KAMLOOPS — It's a terminal disease, and right now there is no cure or effective treatment. ALS, or Lou Gehrig's Disease, destroys muscles and over time it leads to a loss of mobility, loss of speech, and it eventually stops someone's ability to breathe. A terminal diagnosis is devastating at any time, but for a Shuswap man and his family, the reality of living a few more years came just four months ago. What was thought to be a pinched nerve in his back turned out to be ALS. The disease progression has been slow, but relentless, taking over one muscle at a time.

There are people who talk about a bucket list ,and those who live it. Alongside his wife Betty, Martin St Amand is living it.

"We sort of got to a point where realizing there's nothing we can do, so Betty's philosophy is we make the most of the time we have left, and what comes after comes, it's out of our control," says Martin St Amand. 

An upcoming trip to Europe this month, and another to China in the fall. The St Amand's are focusing on big adventures in the face of a cruel disease.

"While we still can do this travelling, we're going to go travel, you just don't know what tomorrow brings so we're just going to live it all each day by day," says Betty St Amand.

February 13th, 2018 Martin's life changed drastically. He was diagnosed with ALS, just 11 months after noticing symptoms.

"I still had a sore back, and that's how it started, and that journey went from a sore back and about a month later, I started getting a floppy foot on the left," says Martin.

Doctors appointments and numerous tests later, the devastating news came. Martin and his wife were met with three life-changing letters that would alter their path going forward.

"Both my wife and I are sitting there and we're like what, how can that be, how is that possible, I don't know anybody who has that disease," says St Amand. "So I said to him, what now, and his answer was go home, get your life in order, you've got 2 to 5 years to live."

Suddenly the retirement dream home they built on an acre of land in the Shuswap meant so much less. And this healthy outdoor enthusiast - avid hiker, biker, kayaker, and snowshoer, was robbed of his mobility.

"It's been difficult because he's so active, and the hiking and stuff like that, he's a very active person and he likes to control things and he just can't control this, it's frustrating for him to be losing his momentum," says Betty.

"My biggest fear is being trapped in a body and I have to have other people do everything for me, I don't want to put my family through that, so I would just as soon go before that point because I just don't think it's right for them to have to go through seeing my suffer," says Martin.

ALS, also known as Lou Gehrig's Disease, causes nerve cells that control movement to die. Over time takes away the ability to walk, talk and eventually breathe. Even though physically it's harder than it used to be, Martin is focused on time with family, and with the support of the ALS Society, he's able to hold on to some independence.

"The ALS Society has been a godsend, they have been fantastic, they've given me the scooter, they've sent me a walker, it's a walker that converts into a wheelchair from a walker," says Martin.

Martin and Betty are all about the very moments they have left together with their two sons and loved ones. And while ALS has shattered many of their plans for the future, they are determine to prove a terminal disease, doesn't mean the end of living.

"Breathe and do your bucket list, gather the family and talk about it, just sit and breathe and start making plans as to how to live each day, you just do it," says Betty.
 

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