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, 害羞草研究所淥h,害羞草研究所� and went back to sleep.

Wells, who was diagnosed with amyotrophic lateral sclerosis (ALS) or Lou Gehrig害羞草研究所檚 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.

害羞草研究所淚n August 2017, I noticed that Vernon had an ALS Walk. I mentioned it to 害羞草研究所榯he Sue害羞草研究所檚害羞草研究所� (Wells害羞草研究所� 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害羞草研究所檚 ALS Walk,害羞草研究所� Wells wrote from his room in a Toronto-area hospital that he has called home for more than 14 years.

害羞草研究所淲e joked about my 害羞草研究所榗elebrity害羞草研究所� 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.

害羞草研究所淭he long and short of it is that my presence will, hopefully, increase donations and fulfil my obligation to the promise that I made.害羞草研究所�

Vernon害羞草研究所檚 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.

害羞草研究所淭he 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,害羞草研究所� Wells said.

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

害羞草研究所淪teve is one of my very best friends and ours has been a lifelong friendship,害羞草研究所� Egan said, adding that she met Wells in university. 害羞草研究所淐ommunicating 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.害羞草研究所�

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

害羞草研究所淔lying is, in a word, boring,害羞草研究所� Wells jested. 害羞草研究所淭he transfer in and out of the aircraft is mildly interesting but the rest is a snoozefest.害羞草研究所�

Wells was studying at Queen害羞草研究所檚 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害羞草研究所檛 want any pity. Wells is sharp as a tack and doesn害羞草研究所檛 let his diagnosis slow him down.

害羞草研究所淚 have a vicious neuromuscular disease, so what,害羞草研究所� Wells wrote. 害羞草研究所淚 would like to help others with my story and the inspiration (and) hope that it provides.害羞草研究所�

Wells completed his degree in physical education at Queen害羞草研究所檚 University and is currently attempting to earn another in law and economics.

害羞草研究所淚 am on some painkillers that really affect my ability to concentrate but I will persevere,害羞草研究所� Wells said.

When he isn害羞草研究所檛 studying, Wells trades U.S. stocks and options online 害羞草研究所� a job he has worked for more than two decades. On top of everything else, Wells also collects art.

害羞草研究所淚 don害羞草研究所檛 know much about art but when has that ever stopped me,害羞草研究所� 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.

害羞草研究所淗is 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,害羞草研究所� Egan said.

害羞草研究所淪teve is an amazing guy. Although he is trapped in a body that doesn害羞草研究所檛 work, he doesn害羞草研究所檛 let that define his life.害羞草研究所�

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

害羞草研究所淓ducate yourself. The more that you know about the disease and it害羞草研究所檚 likely progression the easier the ride will be. You will know what is coming and as such be ahead of the game,害羞草研究所� Wells said.

害羞草研究所淥ne害羞草研究所檚 mental state is paramount. Having a passion that gets you out of bed each and every day is the key.害羞草研究所�

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

parker.crook@vernonmorningstar.com
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