Steve Wells visits Susan Egan at her wedding in Vernon. Wells will once again be in Vernon for the annual Walk for ALS in Polson Park June 9. (Photo submitted)

Longest surviving person with ALS to be part of B.C. campaign walk

Steve Wells will participate in the Vernon Walk for ALS June 9 at Polson Park

  • Jun. 6, 2018 6:15 p.m.

He had been mentally preparing for the day for nearly two years.

And, when that day finally came on March 14, the day Stephen Hawking passed and Canadian Steve Wells became the longest surviving person with ALS, Wells woke with a simple, “Oh,” and went back to sleep.

Wells, who was diagnosed with amyotrophic lateral sclerosis (ALS) or Lou Gehrig’s disease at age 21 in 1980, will hop on a WestJet plane and fly to Vernon for the annual ALS Walk June 9 at Polson Park.

“In August 2017, I noticed that Vernon had an ALS Walk. I mentioned it to ‘the Sue’s’ (Wells’ longtime friends Susan Egan and Sue Rooks). One thing led to another and I ended up making a promise, that being my participation in Vernon’s ALS Walk,” Wells wrote from his room in a Toronto-area hospital that he has called home for more than 14 years.

“We joked about my ‘celebrity’ status, being No. 2 in the world, and how it would increase the donations to the ALS Walk. With the tragic loss of Stephen Hawking and my subsequent elevation to being No. 1 in the world, something that I take very seriously, it became obvious to me at least that I had to become visible whenever and wherever possible. What better way to begin than with two close friends that just happen to live in Vernon.

“The long and short of it is that my presence will, hopefully, increase donations and fulfil my obligation to the promise that I made.”

Vernon’s Walk for ALS is part of a nationwide effort to raise funds to support people living with ALS and the ALS Canadian Research Program Wendy Toyer, executive director for the ALS Society of B.C., told The Morning Star.

“The Vernon ALS Walk is the inaugural ALS Walk of my campaign to participate in ALS Walks from coast to coast. It will probably take at least three years to complete as there are many walks occurring simultaneously in various cities and towns across the country,” Wells said.

Backed by his friend Bruce and his nurse Alsie, Egan is over the moon that Wells will once again visit Vernon.

“Steve is one of my very best friends and ours has been a lifelong friendship,” Egan said, adding that she met Wells in university. “Communicating through email with a retinal scanner, he has helped and supported me through thick and thin. Miraculously, he flew out in person to share in the joy of my wedding here in Vernon. It was amazing that he was able to handle the flight with being on a ventilator.”

For Wells, however, flying is less amazing and more yawn-inducing.

“Flying is, in a word, boring,” Wells jested. “The transfer in and out of the aircraft is mildly interesting but the rest is a snoozefest.”

Wells was studying at Queen’s University in Kingston, Ont. when he was diagnosed with the disease.

ALS is a rapidly progressive, neuromuscular disease. It attacks the motor neurons that transmit electrical impulses from the brain to the voluntary muscles in the body. When they fail to receive messages, the muscles lose strength, atrophy and die. ALS can strike anyone at any time, regardless of age, gender or ethnic origin. Eighty per cent of those diagnosed die within two to five years.

Now, more than 30 years later, Wells spends his days motionless in his chair, but he doesn’t want any pity. Wells is sharp as a tack and doesn’t let his diagnosis slow him down.

“I have a vicious neuromuscular disease, so what,” Wells wrote. “I would like to help others with my story and the inspiration (and) hope that it provides.”

Wells completed his degree in physical education at Queen’s University and is currently attempting to earn another in law and economics.

“I am on some painkillers that really affect my ability to concentrate but I will persevere,” Wells said.

When he isn’t studying, Wells trades U.S. stocks and options online — a job he has worked for more than two decades. On top of everything else, Wells also collects art.

“I don’t know much about art but when has that ever stopped me,” Wells jested.

Egan said despite being in a chair and communicating solely through his computer, Wells is still the same man she has always known.

“His optimism, courage and his sense of humour have been such an inspiration to me and to many. I believe that it is his positive outlook and his big heart that have helped him to be the person who has lived the longest in the world with ALS, having been diagnosed at 21 and now being in his late 50s,” Egan said.

“Steve is an amazing guy. Although he is trapped in a body that doesn’t work, he doesn’t let that define his life.”

And Wells hopes that other who face ALS will follow suit.

“Educate yourself. The more that you know about the disease and it’s likely progression the easier the ride will be. You will know what is coming and as such be ahead of the game,” Wells said.

“One’s mental state is paramount. Having a passion that gets you out of bed each and every day is the key.”

Registration for the ALS walk on June 9 at Polson Park begins at 10 a.m. The walk kicks off at 11 a.m.

Related: Vernon Walk for ALS set for June


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parker.crook@vernonmorningstar.com

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