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Tuesday, May 28, 2024
One man’s journey with ALS: His body ravaged by an insidious disease, Peter Earle vows to face death on his own terms
Peter Earle was diagnosed with ALS in April 2023. The disease progressed quickly and by October, he was living in long-term care at Upper Canada Lodge. He’s since been closing his Queen Street store in preparation for end of life. RICHARD HARLEY

Peter Earle is preparing to die on June 4.

The Niagara-on-the-Lake men’s shop owner has amyotrophic lateral sclerosis, or ALS, which has robbed him of his ability to speak, his mobility and soon his life.

As the disease progresses, it is forcing him to close his popular Queen Street retail store, Halley’s Fashion for Men, and prompted him to move into Upper Canada Lodge so he can have the help and care he needs.

ALS is insidious and takes a physical toll, but it hasn’t affected Earle’s intellect or awareness as he keeps up on the news and oversees the dissolution of his business, including a second store he opened in Kingston in 2017.

Make no mistake, his brain is working at full speed.

Now, almost completely paralyzed, he has no use of his hands. His speech has gotten progressively worse and it is difficult to understand him.

He has limited speech assistance, which helped him communicate during one of the two interviews for this story.

Earle relies on a wheelchair and innovative eye-tracking technology that recognizes his eye movements, allowing him to operate a computer in his room.

With his brain fully aware and functional, it’s a frustrating life.

A man who lived for social interaction and communication, Earle now is mostly restricted to creating short emails, each slowly, painstakingly constructed as his computer interprets the blinking of his eyes.

Through it all, he remains in high spirits — as high as they can be — and is still active in his business, booking advertisements to sell off his remaining merchandise.

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Halley’s Fashion for Men, which Earle took over 10 years ago, has been around since 1992.

It is a bona fide retail landmark in downtown Niagara-on-the-Lake. And he loves running it.

If you live in town, you’ve likely seen him on the street, around the shop or perhaps at the Stagecoach restaurant getting breakfast.

He wasn’t always in the fashion business. He changed careers after 30 years as the head of government and media relations at steel giant ArcelorMittal Dofasco.

With his experience, he’s media savvy and closely follows politics.

He accomplished most of it alone. Married once long ago, he had no children and never wed again.

Now 74, he is forced to come to terms with his illness, which came on suddenly.

In July 2022, Earle knew something was wrong. He had symptoms of what he suspected was a neurological disorder.

“I’m pretty intuitive,” Earle says during an interview in his room at Upper Canada Lodge.

He saw his family physician and was immediately sent to the McMaster University Medical Centre.

He was told his suspicions were right — he had all the signs of a neurological disorder, but doctors weren’t sure what it was.

By the end of October, he was advised he might have ALS.

At that point it was manageable.

He was having issues with his hands and arms not co-operating, but he was still driving to Kingston to manage his other shop, still working.

He was officially diagnosed with ALS in April 2023.

Even with the diagnosis, he still felt mostly OK. His right hand and arm were weak and he had trouble controlling them. His body was starting to betray him.

Through July 2023, though his symptoms had progressed mildly, he was still working, still having those breakfasts at the Stagecoach, where he’d talk politics with friends.

“I was near normal,” he says.

That August, he began only driving locally and stopped going to Kingston. Things were looking worse.

On Sept. 1, 2023, he fell at home and couldn’t get up. He had lost control of his arms.

Pulling himself with one arm, it took him an hour and a half to crawl to his front door, where he shouted and shouted until his neighbour Joe Rose heard him and came to help.

His condition deteriorated rapidly.

He was admitted to the St. Catharines hospital on Sept. 4 and Hotel Dieu Shaver rehab hospital on Sept. 20.

On Nov. 2, he moved into Upper Canada Lodge.

Just like that.

He had left his home in September — “and I never went back.”

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He says he will take his life into his own hands when he loses complete control of his body. That is happening quickly and June 4 is barely a month away.

In the meantime, friends have been taking him out about once a week to the Shaw Festival just down the road.

And while he’s in good spirits despite it all, the difficulty communicating can be frustrating.

It’s particularly tough in social situations.

“I had a very hard time at a lunch meeting with my neighbours,” he says.

“Five people in a social setting, who are not used to hearing me. It’s very hard for everyone.”

Sometimes people don’t know how to interact. Because his speech is much slower than normal, they often start filling in the blanks for him, or trying to finish his sentences — which he finds irritating.

“They do all sorts of things other than listening and waiting and clarifying when they don’t understand.”

Dr. William Brown, a friend of Peter’s, says he’s guilty of the same thing.

“I mean, I noticed that the tendency for most people who visit him, is it takes so long to get it out, that they try to complete what he’s saying. They kind of step on him.”

“And I do it, too. But he really doesn’t like that. Partly because a lot of us were guessing wrong.”

As Earle notes, “Everyone is guilty of that because we take our communication for granted.”

Brown, a professor of neurology (who writes a weekly column for this newspaper), met Earle by chance at the community centre in January 2023.

He noticed Earle on one of the stationary bikes and saw that his right arm was weak. He struck up a conversation.

They realized Earle’s ALS specialist was John Turnbull, a former student of Brown’s at Western University, who now leads the ALS clinic at McMaster in Hamilton.

In those early days, it was just Peter’s right arm giving him trouble.

They became friends and would go out to the Charles Inn for a drink about once a week.

“And then that right arm, it was almost useless within six months from my meeting him,” Brown says.

Then it was his left arm and then his speech began to decline.

Brown visits him regularly at Upper Canada Lodge and admits it’s tough to watch what Earle is going through.

“Here’s a guy, now, almost completely paralyzed — functionally completely paralyzed in his arms — so he can’t use his iPhone and can’t write stuff out,” Brown said.

“And I think he’s found it very frustrating.”

It’s especially challenging for someone like Earle, who is “all there.”

“It’s really frustrating to tell people what you’re feeling, what you’re thinking about, what’s really bugging you, what you want and whether they’re fed up with you for the moment, or kind of whatever — or they want to go to the can,” Brown says.

It also can be awkward for people who try to communicate with him.

“What do you say to somebody that’s in such bad shape?”

Brown says the technology is coming along to help people like Earle communicate, but it’s not there yet, nor is it affordable for the average person.

But for someone like Earle, the technology could literally be a life-saver.

“If reasonable speech could be restored to Peter, he would probably want to continue on. Probably. That’s what I think. I’ve never asked him that question,” Brown says.

*****

Knowing the date he will die is comforting in a way for Earle.

“My mind is still good,” he says. “But it’s the right thing to do. The alternative is much worse.”

Eventually, as full muscle control is lost, ALS would steal his ability to breathe.

“Why would I go on like this and get nothing but worse?” he says.

“Really, I have no communication. And that is no life.”

Earle is full of praise for the medical system, including the staff at Hotel Dieu Shaver and Upper Canada Lodge, who have helped him manage his life and cope.

He’s extremely thankful to his staff and his old friend Warwick Jones, who have helped him continue to operate and close down the business, and to longtime friend Jim Ryan.

On June 4, Earle will embark on his final life journey.

There will be a reception to celebrate his life on June 12 at the Niagara-on-the-Lake Golf Club.

If Earle could be there, no doubt the latest in news and politics would be a big part of the conversation.

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