MAN ADVOCATES FOR ALS PATIENTS FOLLOWING WIFE'S DEATH

PRIOR TO HIS WIFE DIAGNOSIS, MICHAEL PETRACHENKO ADMITS HE DIDN'T KNOW MUCH ABOUT ALS

When Michael Petrachenko and his wife Monique Coutu got her ALS diagnosis, they decided to make the most of what time she had left.

After four years of doctor appointments, trying to figure out what was ailing Coutu, they received the ALS diagnosis in 2017.

"It started (with her being treated for) carpal tunnel (syndrome)," Petrachenko said, explaining that she was having issues writing. Then, they thought maybe a brain tumour, or a stroke, before they landed on amyotrophic lateral sclerosis (ALS).

ALS Canada defines the disease as "a disease that progressively paralyzes people because the brain is no longer able to communicate with the muscles of the body that we are typically able to move at will."

When his wife received the diagnosis at age 58, Michael admits he didn't know much about it beyond the viral Ice Bucket

Challenge.

After he learned more, Petrachenko said he and his wife went through a few weeks of grieving, before one day she had a total turnaround, like a switch had been flipped.

"We bought a van from an ALS patient who had just passed, and we started travelling all over North America," he said. "We flew to Palm Springs, we drove to Florida. We went everywhere. And we just kept doing stuff because we knew that it's going to come a time where she can't do all that."

Though he's been participating in the "Walk to End ALS" for five years,

this year was his first time without his wife, as she died in November.

He and his friends participate in the walk under a team called "Unique Monique," a name coined by Coutu herself.

This year's walk took place on June 3, at Grantham Lion's Club in St. Catharines.

While participating in the walk itself is important, Petrachenko said the real goal is to raise money.

He said about 60 per cent of the funds raised go directly to patients who need the help, and the other 40 per cent of funds go to research.

Money to help patients

is often greatly needed, he said.

"In the States, ALS is also known as the bankruptcy disease," he said. "You get it, you're selling your house, you're selling your cars just to downsize and take care of all the things that are needed as the use of your mouth starts to stop, your breathing is a problem because everything's a muscle, right? You know, despite your five senses and your mind working as well as they always have."

Friends rallied around the couple, who live in Welland, to helped convert their garage into a fully accessible apartment of

sorts for Coutu to live in.

Since her passing, most of Coutu's equipment has been donated to other local ALS patients.

Local health systems were incredible to work with, Petrachenko said. As soon as they received the diagnosis, he was called by Hotel Dieu Shaver, a rehabilitation hospital, which wanted to get audio samples of Coutu's voice while she could still speak. That way, when she needed to use a computer to speak, she would be using her own voice.

"It used to be that it was for older people, but now there's people in their 30s being diagnosed," he said.

"Doesn't matter, male or female, doesn't matter what position you have in society, what kind of work you did. We don't know how it starts. We don't know how to slow it down. We don't know how to stop it."

It is estimated that more than 3,000 Canadians are living with ALS.

In Coutu's final years, the couple developed a motto that Petrachenko still holds dear, and hopes others will learn from as well.

"Keep busy living, enjoy friendships, enjoy family and enjoy Mother Nature," he said. "Enjoy what you're capable of doing."