former nhler mark kirton living and leading with als: 'be loud about it'
"i want the word to spread how devastating this disease (als) is for families. and do something about it"
6 minute read
mark has three grown kids—adam, sarah, and taylor (far left, second from right, far right) and is retired from the 34-year realty business he and his wife lisa (second from left) built in oakville, ontario that she continues to run, when she’s not “wearing the hat at home as well,” he laughs.
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as a kid growing up in the prairies, mark kirton was skating on frozen ponds from as young as four. he wanted to play in the nhl just like his friends, so he chased that dream with single-minded determination. “i don’t think that there was any doubt in my mind that i wanted to play. i never even thought about going to university. and then i was fortunate to make it.”
for 11 seasons, from 1978 to 1988, mark played for the toronto maple leafs, detroit red wings and vancouver canucks. “i still remember stepping on the ice that first shift in toronto, and when i scored a goal, i swear my feet didn’t touch the ground for days.”
he was known most for his sportsmanship, his sense of humour and great big heart.
his character, along with his family and longtime friends, have seen him through some tough days. in 2018, he was diagnosed with als, or amyotrophic lateral sclerosis, a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord, gradually taking away mobility and function. every muscle breaks down over time. there are few effective treatments for als and no cure.
right now, there’s about 3,000 people in canada living with als. about 80 per cent of people die within three years of their diagnosis, and 1,000 families lose someone each year to als. those who live for longer than five years usually rely on a ventilator through tracheostomy and communicate with their eyes and eye-gaze technology. als has been described as “living in a glass coffin.”
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mark’s take on why him, why did he get this devastating terminal disease?
“playing professional hockey for 11 years, you know, you get pretty hard in some areas. you’re in a locker room environment, which breeds humour and teasing and stuff like that. i know it sounds kind of dark and weird, but it’s almost like hockey prepped me for this,” says mark, now 67, who spends his days mostly in a power wheelchair.
his personal support workers (psws) help with his feeding, toileting and care because he no longer has the use of most of his body. he has a breathing aid with a tube attached to his nostrils to keep his diaphragm working. for now, he can still move his head, talk and use voice to text on his computer.
and he has a great laugh. you can’t help smiling back at him.
mark kirton played 11 seasons in the nhl for the toronto maple leafs, detroit red wings and vancouver canucks.
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early signs of als and the path to diagnosis
for mark, it started in early 2015 with an uncontrollable twitch in his right bicep, which he dismissed as too much caffeine. but then it spread to his fingers on that hand, weakening his grip. that was followed by numerous falls when his knee or ankle gave out, and then he had trouble gripping his golf clubs playing another game he loved with his friends. he ended up golfing with fat grips on his clubs and basically one arm.
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yes, he went to the doctor that spring, leading to a gamut of tests that went into 2018, including lyme testing, numerous emgs for nerve or muscle dysfunction, orthopaedic appointments, nutritionists, and rheumatologists. meanwhile, the spasms and cramping of his arms and legs would keep him up during sleepless nights.
in april 2018, he and his wife met with a leading als doctor from sunnybrook hospital in toronto who gave them mark’s diagnosis of als, crashing their world in about 10 seconds. mark told the doctor that he planned to be around for a long time, despite the lifeline statistics.
“my wife and i decided that night that i had two choices. i could either go into the corner and be silent and not tell anybody,” he recalls. “or i could make a difference with what longevity i had left. i chose the latter.”
friendship goes the distance when you’re struggling with als
“i told my close friends—i’ve got 13 buddies that have known each other for 53 years—we still hang out and we do a zoom call every week. and they visit all the time, but i tell them right away, do not ever come up to me with pity because i’ll show you the door,” he says.
pity doesn’t help, but friendship goes the distance.
mark has three grown kids and is retired from the 34-year realty business he and his wife lisa built in oakville, ontario that she continues to run, when she’s not “wearing the hat at home as well,” he laughs. her domestic duties include taking care of the house, getting groceries, prepping meals and looking after mark when the psws go home.
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what’s most important about living with als for mark is the love that surrounds him.
“i certainly am,” he says of being supported by loved ones. “i’ll tell you right now if i did not have the care that i have from the family and the psws, there’s no way i’d be here. it’s all attitude, right?”
about five to eight per cent of als cases are hereditary, passed through genetic mutations, but the bulk of people impacted have sporadic als where a genetic mutation happens at random. it can strike anyone at any age. “it’s the worst disease in the world, like your brain is 100 per cent normal. everybody who has als has it a little bit differently.”
als comes with family pain and sacrifice
and his als has never been just about him. when the disease strikes a member of a family, it strikes everyone. mark is keenly aware of the pain on the faces of family members when they see him struggle, the countless hours of care and the sacrifices they make to help. he’s written about his als journey, pointing out the hard truth: “while i have the als diagnosis, the whole family has it as well, through me. in essence, they become an extension of me.”
in the fall of 2020, he met a group of “pals” (people with als) from across canada who created a patient-led initiative, als action canada, to find a cure. he joined with characteristic determination, proud to be a board member and to call the members his friends. the group runs a virtual support group every other week where they share stories and tips on what’s needed as the disease progresses.
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mark says als is also known as the bankruptcy disease because of the mounting costs of things like care and home renovations to make rooms accessible, advancing to where you need a hoyer lift to transport you out of bed to the toilet, for example, motorized wheelchairs, chair lift, ramps and a hospital bed. the list of assisted living devices is long.
he’s also taking one of three treatments approved by health canada that may slow down progression and extend his life. there are about 180 trials going on around the world, he says, highlighting one for focused ultrasound at sunnybrook hospital.
mark kirton has made and kept many friends over the years, including other nhl stars wayne gretzky, front left, and brendan shanahan, front right,
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appreciating the positives, like watching a lot of sports and his devotion to als action canada, is a welcome respite from all the daily challenges. the group recently launched the als super fund with medical expert advisors to offer supports to people and their families, and help boost fundraising efforts and direct where funds should go to research and investigative trials in canada. marks says about $1.4 million of the $2 million raised is a feat accomplished in the last 18 months.
he’s also helped to bring professional sports teams and celebrities to the cause, participating in popular fundraisers like last december’s virtual concert headlined by jim cuddy of blue rodeo and featuring nhl legends like hall of famers darryl sittler and wayne gretzky. he says there’s more to come.
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mark has also had time for self-reflection and appreciating life, because you can’t take it for granted.
“i’ve had a good life. i love playing hockey. i love golf. and then i get hit with this,” he says. “my only regret would be that i didn’t stay healthy long enough for lisa and i to be able to fulfill her plans to travel and start to really enjoy each other after the kids were gone.”
words are powerful. so, at the end of the day, what’s his message to others?
“that’s easy,” he says, quick to smile. “when they hear that somebody has als or they they’re in a conversation where als comes up, i want them to be loud about it. i want the word to spread how devastating this disease is for families. and do something about it. if there’s a fundraiser, get involved, and if the topic of als comes up, get knowledgeable about it so you understand what you’re talking about and you can spread the word.”
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