‘Be grateful for what you have’ Once-active marathoner diagnosed with ALS shines light on devastating disease By: Katie May Posted: 7:00 PM CDT Thursday, Jun. 16, 2022 Last Modified: 11:21 AM CDT Friday, Jun. 17, 2022 Updates

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This article was published 15/06/2022 (925 days ago), so information in it may no longer be current.

Until six months ago, Kevin Rosen’s internet searches were fuelling his growing fear.

Unexplained changes to his physical abilities had been plaguing him. It started subtly: the soft-spoken 50-year-old Winnipegger began to have trouble getting words out. He was involuntarily slurring his speech. Even though he was in great shape, he felt weak. Then, his muscles started twitching. He wondered if he’d unknowingly had a stroke.

Rosen is an active dad and seven-time marathon runner, but online symptom checkers pointed to a progressive neuromuscular condition that could steal his ability to walk, speak, and breathe. They turned out to be correct: amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease.

Now, having his fears confirmed via a medical ALS diagnosis was strangely freeing for Rosen, who is opening up about his experience in hopes of helping the more than 400 other Manitobans with ALS and related neuromotor conditions.

The paralysis-causing condition is fatal, and the majority of people with ALS die within two to five years of being diagnosed. There is no cure and current treatments don’t halt degeneration of parts of the brain and spinal cord.

His prognosis was a “gut punch” that took time to process but Rosen has been able to find glimmers of hope. His words are laboured now, but he’s finding his voice in a different way. As a self-described glass-half-full kind of guy, he wants to pass that cup around.

“What brings me some joy now is knowing that I have the chance to rebalance my life. I think, like many people, my life was out of balance before. And even though I have received a heartbreaking prognosis, I’m so grateful that I have some time to shift my priorities and really be present and focus on the things that matter,” he says in a recent interview.

One of the things that has mattered most is the outpouring of support Rosen received as soon as he started telling the people in his life what he was going through.

For more than two years, even as he endured a series of specialist visits and medical tests — that in January led to an ALS diagnosis via the process of elimination — Rosen kept quiet about his symptoms, confiding only in his wife Judi.

“I’ve always been a very private person,” he says. But as soon as he started opening up, support from family, friends, co-workers, and even distant acquaintances was “tremendous and touching.”

“It really helped soften the blow of the gut punch,” he says. “It helped me through a hard time, and even now, the love and support I receive, I’m so grateful for it, and it helps.”

June is ALS awareness month in Canada.

With certainty came some relief, Rosen says. When he didn’t know why he slurred or suddenly felt weak, he was self-conscious about it. No more.

“It feels more freeing to not have to work so hard to hide it,” he says. “It was a stressful couple years, and as strange as it sounds, when I got the diagnosis, part of me was relieved just to finally know what had been happening to me.”

That’s why speaking up now is important to him, Rosen explains. He has hope for research advancements, better treatment and a cure. Not just for himself but for other Manitobans coping with ALS.

Many of them will be taking part in a Walk to End ALS charity fundraiser at Assiniboine Park on Saturday morning, aiming to raise $155,000.

“I don’t know how much support each of them has, and I think the more attention we can raise for them, the better,” Rosen says.

In an interview, Rosen doesn’t gloss over the reality of his future but his optimism shines through.

Post-diagnosis, he stopped working after 25 years in marketing and communications. Like so much of his daily life, job tasks had been getting harder. He doesn’t need mobility equipment or medical devices yet, but he’ll turn to the ALS Society of Manitoba when he does.

“I know that it’s coming soon to a theatre near me,” he says lightly. “And when the time comes, I’m very grateful to know that there is an organization like that that’s equipped to help me and to help others in that situation.”

“It feels more freeing to not have to work so hard to hide it.” – Kevin Rosen

Now, his days consist of several hours of various speech, tongue and breathing exercises to try to maintain his level of muscle function. He goes for a run when he can, knowing he may not be able to for much longer, and tries to cut out all the noise and really enjoy time with family and friends.

There’s no time for aimless scrolling or responding immediately to every email, text and notification ding. Every day is different — a symptom that bothered him yesterday may be gone, only to reappear next month.

So Rosen takes it day by day and spends as much time as he can with the people he loves. “Be present” is his advice to his past self and to others — and not in a superficial way.

“Be grateful for what you have and appreciate the moment, because you never know how much time you’re really going to have left. I think people acknowledge that, but it’s almost a cliché,” Rosen says.

“Being able to actually experience that as I do now is what helps me be more positive and gives me hope.”

katie.may@freepress.mb.ca