Canada’s ALS Stories – Mark Kirton, Oakville

Every young boy growing up in the prairies, skating on a frozen pond, dreams of playing for the NHL. I lived that dream from 1978 to 1988, playing for Toronto, Detroit and Vancouver. 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. After leaving hockey, I went on to raise a family and develop an ongoing 34-year Real Estate career in Oakville (just west of Toronto). My name is Mark Kirton, and I am now 66 years old.

It seems like it was yesterday, but it was April, 2018, when my wife, Lisa, and I were sitting nervously in a 6 x 12-foot waiting room at Sunnybrook Hospital, waiting for the results of yet another EMG test. But it this time, a leading ALS Doctor from Sunnybrook was at the helm and reading the results.

As he entered the room, it took all of about 10 seconds for our world to come crashing down. Diagnosis ALS and no cure. My first thought, while consoling Lisa, was how were we going to tell the kids? There are three, with the youngest being our then 13-year-old daughter. The next thought, was how Lisa and I had worked so hard, for so many years, in order to set up our golden years of enjoyment, and how, in a matter of seconds, they were snatched away from us. I looked towards the Doctor as I told him that the lifeline stats might not be long with an illness like this, but I am ready to do battle. And I plan to be around for a long, long time.

Later that night, I made the conscious decision to do everything in my power to remain the same person I have always been, and to make sure that my circle of friends treat me no differently. I wanted to be able to start every day with a 100% positive outlook, second to none determination, and lastly, never lose my sense of humour, no matter what the challenge was in front of me. I am still that way today, 6 years since diagnosis and 9 years since my first symptom.

When ALS strikes a member of a family, it really strikes everyone. The pain on the faces of family members when they see you struggle, the countless hours of care needed daily and the sacrifices they give, to help with everything, is true love at its finest. And let’s be honest, while I have the ALS diagnosis, the whole family has it as well, through me. In essence, they become an extension of me.

It all started back in March 2015, when I had an uncontrollable twitch in my right bicep. Did I need to cut down on my coffee? At the time, I was told it was probably benign fasciculations. But not too long after, it spread to my fingers on that hand, and my grip weakened. The weakness factor became really apparent when I was in the gym and couldn’t do a bicep curl with only the bar ….

Then there were numerous falls, where my knee or ankle would simply give out, and down I would go. At the golf course, I would beg my competition for more strokes to compensate, because I couldn’t grip the club properly. I eventually ended up playing with fat grips, hybrid woods and basically one arm. Still no strokes? But I love the guys still the same and wouldn’t want it any other way.

We spent from April 2015 to April 2018 going through a gamut of tests. IVIG treatments at McMaster, Lyme testing, numerous EMG’S, orthopedic appointments, inflammation appointments, nutritionists, rheumatologists, blood work and on and on. And yet the disease was moving like a clock. Right arm, left arm, left leg and then right leg. The twitching fasciculations and subsequence cramping’s were over the top. Every night I would lie in bed and have to deal with these spasms. Ouch

People that have this illness totally understand, it is really a game of inches. In the initial stages of the ALS journey, whether one is trying, without help, to get up off the side of the bed, office chair, shower chair or toilet, if the seat is too low, it is an impossible task. And then advances to the point that one needs help dressing and undressing, showering, preparing food and, being rolled over in bed due to paralysis and on and on. Not to mention that everything else that you took for granted, now becomes a huge challenge.

Then there was the incredible expense of the house renovation to make the bathroom, bedroom etc. accessible. Things then advance to the stage to which a Hoyer lift, motorized wheel chairs, chair lift, ramps and hospital bed come into play and become part of our lives. And of course, there is the Cough Assist to use whenever I get congested with phlegm that needs to be removed because my cough is simply not strong enough on its own and choking becomes a problem. With feeding tubes, breathing apparatus and loss of speech and eventually total paralysis around the corner. Wow, there is so much to look forward to, sigh, along with overwhelming costs, to aid in the quality of life? Now I see why ALS is called the bankruptcy disease! And now, unable to walk and confined to a wheel chair for the last 3 years. Needing the transfer lift to move me from wheelchair elsewhere. At this stage, I need help with virtually everything including dressing/undressing, feeding, toiletries etc. but you know what, I am blessed because I can still speak, swallow and breathe. ALS affects everyone different but ultimately has the same result.

The best way to describe this, is it is very much like being trapped in your own body like a glass coffin, with a fully functioning brain, which certainly helps for a while, as one navigates his/her way through 100’s of daily challenges. I am still able to navigate a mouse with the palm of my hands and use the computer by speaking into it, to aid with emails and texts. But when it worsens, I will become totally trapped and have to rely completely on others to cope around-the-clock.

All throughout the journey, the memories are etched in stone. One day in January about 5 years ago, I was turning out the lights in the lower level of a house that I was showing and proceeded to slowly walk up the stairs, leading with my stronger right leg. But for some odd reason, when I reached the last step, I switched to lead with my left leg, and slowly I started to tilt backwards. There was nothing I could do to stop it. So, I put my flailing arms up on top of my head and down I went like a 10-pin bowling ball. Upon reaching the bottom, quickly I might add, I lay on the rec room floor in the fetal position, wondering if I still had all my faculties or not and where I was. Actually, it crossed my mind, that I was probably in the same position that the murder victims are in on a TV series, just before they get chalked. Regardless, the client had left, and carefully I somehow willed myself to the top of the stairs and home. I have been hit and knocked out in the NHL, but this was like I was run over by a freight train.

I tell this story, to make 100% sure that everyone inflicted with this horrible disease is extremely careful near stairs. I have heard of similar events that didn’t end well. I realize now how lucky I am to still be here to fight the fight and that I must have a purpose in all this.

We then added a new “in house rule” thanks to me and a fall later that year. IF I plan to watch TV after 10 pm, the rule is, that I have to wear my hockey helmet. Trust me, it is not a good look. An old NHL goalie friend of mine, Chico Resch offered me his goalie mask, so that I could fall in any direction. Nice.

Currently, I am only taking 1 of the 3 treatments approved by Health Canada. 5 years of EDARAVONE (Radicava) treatments 10 days per month and stopped taking the other 2 because daily Riluzole pills were driving my liver numbers upwards. And the drug Albrioza due to reactions and unfavourable phase 3 results in the Phoenix trial.

These are not cures. They are for slowing down progression and extending life of which we are now not sure they even do that? Having said that, I Am encouraged by all the trials that are taking place around the world. Especially promising, is the trial for focused ultra sound opening of the blood-brain barrier, right here at Sunnybrook Hospital, through Dr. Zinman, a leading ALS doctor, and his team.

Even though ALS advocacy Awareness has really improved in the last 3 years, there is way more that can be done to help the cause. More ALS AWARENESS, RESEARCH FUNDING, COUNTRIES WORKING TOGETHER to share results, bringing TRIALS TO CANADA and making TREATMENTS AFFORDABLE. FASTER TRACKED and EASIER ACCESS to the ALS patients where time is of the essence, or many of us wont live long enough to benefit. We need to get the promising drugs in to our bodies asap and not be tortured, waiting for red tape approvals for months! Then, when the drug is finally approved there is the issue of whether one qualifies for it. In most cases, the patient does not because the diagnosis from symptom onset to diagnosis is too long of a period. It makes no sense! Currently the approval process through Health Canada can take up to 2 years or more, unless they designate it “priority review“ which we are looking at 180 days. And then, it needs to be provincially approved. With the average lifespan of an ALS diagnosis being 2 to 5 years, one can certainly see the urgency.

You see, the bottom line here is, there are no 2 patients that have ALS that are exactly alike. It affects everyone different. And because of this lack of the equality, the slow progression drugs will help some significantly and others not so much. Therefore, why not make the drugs available to all? If it benefits some, it’s a win. And then to take it a step further and put restrictions on who qualifies using a criteria of for example an 18 month window from symptom onset to official diagnosis when it comes to the most recent approved drug Albrioza. How can that possibly work when foremost it takes 2 to 3 years from symptom onset to be diagnosed officially with ALS?? The system needs change! It makes no sense.

MAJOR LEAGUE BASEBALL stepped up to the plate 3 years ago in 2021 and agreed to have an annual LOU GEHRIG DAY (June 2) to help with ALS Awareness. And so, they should. After all, he is one of theirs! Lou Gehrig was a Hall of Fame superstar with the New York Yankees and it is the right thing for them to do. It was a huge success. It was the greatest opportunity the ALS community has had in 80+ years, to have our story, the ALS story, heard across the land and have it resonate with its people in a way that rallies them to our cause like never before. It was a huge day for all of us and was proud of MLB and their step up to the plate.
The NATIONAL FOOTBALL LEAGUE/college football have numerous former players afflicted with ALS and hopefully they will follow. With Steve Gleason from the New Orleans Saints, Steve McMichael from the Chicago Bears and O.J. Brigance of the Baltimore Ravens are only 3 of many.

THE NATIONAL HOCKEY LEAGUE and NATIONAL BASKETBALL ASSOCIATION also have former players, managers and extended family members, who have ties to ALS and have experienced the devastation it has caused in its wake. With the most recent being the passing of Toronto Maple leaf superstar Borje Salming and Chris Snow assistant general manager of the Calgary Flames. And the diagnosis of Bob Jones the assistant coach of the Ottawa Senators .

Hollywood has been hit as well, with their beloved late publicist, Nancy Ryder, whose many friends stepped up for the cause. The music industry is been hit as well with John Hopkins from the Zac Brown Band Inc. recently diagnosed and immediately becoming an ALS advocate.

But there is no question, that the ICE BUCKET CHALLENGE has been the biggest ALS awareness launch and fundraiser in the past, but the ball was dropped due to the passing of their leaders. It is important now, to pick up and carry that torch to the next level and find the cure.

ENOUGH is ENOUGH? LOU GEHRIG died in 1941…80 YEARS AGO!

It is also so very important to understand and realize that our ALS afflicted “leaders” right now, like the late Pat Quinn and Peter Frates (ice bucket challenge), Brian Wallach www.iamals.org  New Orleans Steve Gleason and others, are only able to lead for so long, before the turnstile turns to the next in line for a re-start.

This is why TIME IS OF THE ESSENCE. It is time to step up and get some resolution in a BIG PUSH, like so many diseases have successfully done. Or recently Covid 19 and of course HIV. The momentum needs to stay strong!

LET’S MAKE THIS DISEASE TREATABLE … NOT INCURABLE!

In September 2020, I met a group of PALS (People ALS) from across Canada who had come together to create a patient led initiative to find a cure and I am now a part of it.  www.alsactioncanada.org they are extremely well organized, determined and tightly aligned in their quest for a cure. I am proud to be a board member of this group and to call them my friends. They are the bravest, most courageous people I have ever met! Always a smile and a look of determination each and every day. Even when at times, things feel insurmountable. But the sad part is that we have lost 31 members in the last 20 months and another 20 or so coming on board newly diagnosed. 2 recently aged 31 and 32 years old.

As a group we recently launched a new website called http://alssuperfund.ca which has some amazing support videos on it. We have recruited some of the sharpest minds in the ALS space to act as an Advisory Council to recommend where the funds should be dispersed. Leaning towards research and investigative trials in Canada.

I have stepped up my ALS advocacy awareness and fundraising by completing the following initiatives which have raised over 1 million in the last year:

– Design/build of the ALS Super Fund website

– Recruited top ALS neurologists, scientists, clinicians for our Advisory Council

– 33 former Hall of Famer celebrities and sports media complete promotional ALS videos played on social media during June ALS awareness month.

– Completed a 7 NHL Canadian team campaign, where they all collectively raised funds through their old initiatives and donate to the Super Fund… Over 1 million raised.

– Other fundraisers such as golf tournaments, speaking engagements and other initiatives

– Implemented and cohosts a biweekly support Wednesday to allow ALS patients and caregivers the opportunity to converse and help each other through the different ALS stages

– Plans for another campaign in the fall of 2024.

In closing, I will leave you with this.

Time is the most valuable commodity in the world. And very often taken for granted.
And there sure isn’t a lot of time, for people with ALS. Inevitably it’s a death sentence.

The feeling of helplessness, when you have a fall and watch your daughter and wife look on with disbelief. In their minds, they cant comprehend how their NHL dad and husband, who had legs so strong at one time, folded like an accordion and is laying there hopelessly lost and unable to move.

In the end, I have no idea with respect to timelines and how It will play out for me. I am now into year 7 since diagnosis, of a 2-5 average lifespan. In other words, I am playing with house money. But I can control and try and capture every moment, every day with the people I love. Teach them everything, I have learned over the years and make them feel proud that they battled, right along side me to the end.

Thank you for allowing me to share my story and thoughts.

Mark Kirton

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Link to Original Article: https://www.alsactioncanada.org/als-stories/