Marty Hatlelid, Ladner (written by Alison Acheson)

In May of 2015, my spouse, a musician and guitar teacher, experienced an evening gig when his guitar felt too heavy. At the end of the night of music, he was exhausted, and could hardly take his equipment—heavy speakers, and other gear—back to the car.

For some months, he’d struggled to play his beloved gypsy jazz on his guitar, and convinced himself he had arthritis or carpal tunnel…or something. But after that May evening, he booked a time to see our GP.

Our GP was post-retirement age and had had 3 patients with ALS, and he knew the one marker question to ask: How have your emotions been lately?

Marty’s had been all over the place, crying when he left his brother at an airport—so unlike him.

He talked to our doc on a Wednesday, and the doc booked some immediate tests, and phoned us Sunday night to come in together on Monday. He gave us a preliminary diagnosis that quickly. By July 21, we had it confirmed by two neurologists.

The progression was very quick, with the onset in his hands, and fasciculations (twitching) in upper arms, which I had noticed in April. He managed to play golf through that summer, even though he went about the course with a cart shortly after the GP’s diagnosis. I am so glad he had that time of golf. While he was golfing, I was madly researching…always coming up empty-handed. As a UBC employee, I spent hours in the medical library, and all that yielded was that green tea is indeed useful. Not much.

We did consult a naturopath, who said she hoped to ameliorate pain and slow progression, but she would not be able to do more than that, she said. I soon became aware that not all sources of info were as honest as she. I also began daily journal jottings to try to hold myself together as the person in the family whose task it was to just generally hold everyone together…mostly the journal became a repository for thoughts on how to be hopeful in hopelessness, how to both accept and still push; it is all such a balance. Later, that journal became a memoir. I wrote the book that I was looking for, to read at the time. I could not find anything.

https://www.goodreads.com/book/show/43975907-dance-me-to-the-end

Our times at GF Strong were abysmal. In their defence I will say that the nurse on staff—who had been there almost two decades at that point—was very helpful. She would not hesitate to spend an hour on the phone talking. The OT was also very helpful with practical matters—foam to wrap around eating utensils, for instance, and photographs of how to renovate a bathroom.

My brothers and nephew and father added a roll-in shower to our downstairs powder room, and a ramp from Marty’s teaching studio…which then became a bedroom. I was so grateful we did not have to move, and that, other than 24 hours, for feeding tube surgery, he never had to leave home.

But the bleak basement of GF Strong, and many of the staff, are woefully inadequate. I trust with the COVID time we are now in, they may have had to change up their approach. In early 2016, I asked if we could do a remote meeting, and stay home, and was told “no.” Our Canadian medical system is so committed to policies and procedures, with little flexibility. We are all loathe to critique it! (And for good reason in many ways…) But it does need to be re-envisioned. Flexible. Practical…to meet needs. I feel that the same amount of funds can probably do this…but I also work in a giant educational institution, and know such systems have issues. (Mostly of their own invention.)

We had communication specialists come to our home, and when I compare the resources we were given, compared to what I see folks living with on a Facebook page I am active on, I’m appalled. Marty was given an ipad…which we already had. They added inadequate software. No more useful than what we already had.

What most bothers me is the fact that at no time was I given information that would have been truly useful. I bought a book written by specialists in Oxford, UK, and learned more from reading through it twice.

https://www.goodreads.com/book/show/7627751-motor-neuron-disease

It took me some weeks to realize that ALS is MND in the UK, otherwise I might have found it earlier.

From this book I learned the reality that ALS has a “pace”, and each person is different—the pace is equal to the rate of onset. So Marty took days to diagnose, and his pace was rapid. No one at GF Strong told me that. Also no one told me that only 20% of people with ALS have that “clear mind” that—to me—was the real horror that I found at the age of 12 when I saw “The Lou Gehrig Story.” Marty was not in that 20%. But neither was he in the 5% who experience outright dementia. Still, NEVER did anyone at GF Strong talk with us about Frontotemporal Dementia. Marty seemed to me to be somewhere at the mid-point between lucid mind and dementia. This greatly affected his capacity to communicate in any way with us in the last few months, and emotionally created challenges even before that. I have written about this on Medium.

https://medium.com/illumination/als-and-frontotemporal-dementia-13c757cef7fb

Recently, taking part in a “book club” event to share my memoir, it turned out that one of the club members is a death doula, and she asked if we have these in Canada. (She is in CA.) I said we do, but—again—no one ever mentioned such a possibility, and it did not occur to me. The immersion in caregiving can be overwhelming, and it really is useful if medical folks can be supportive and come up with useful suggestions and knowledge.

Months after Marty passed, I finally had time to open some mail. And was blown away, opening an envelope from the ALS Society that included a note about the possibility of their supplying at-home nurses who are ACTUALLY TRAINED to work with folks with ALS. Certainly, public health care-aids most definitely are not. We had one come in once, and I swore never again; I ended up training him for the time he came…and they could not guarantee that it wouldn’t be a different aide every time!

How do doctors not know that these resources are there? How does the so-called ALS Clinic not know to advise? How do they not know about THE most frequent form of dementia that can strike with this illness? The social worker that worked with Marty appeared to have no concept of palliative care. The best he could offer was, “You know what has worked for you in the past when you are challenged? Well, do more of that.” I remember being tempted to ask if he’d actually paid for his education.

I realize that this type of work does not come just from training; it has to come from a deep pit of wisdom in an individual. Education only adds to it. It cannot create it. Hiring individuals for such positions takes wisdom on the part of the hiring committee, too. So yes, we need funding…but we need wisdom even more. And that is in even more short supply. Alas.

One big area to approach in this country is to free us from the protocol that surrounds medical research! When I searched for any type of research Marty could take part in, there was nothing that did not require for at least two years to have passed since diagnosis; we need for people who are diagnosed to be able to access taking part as quickly as they are prepared for! Marty’s time was short, and if he could have, he would have been pleased to take part in research, no matter how experimental it might have been, not just for any positive results for his own self, but also to leave a legacy. To feel useful. All humans want the opportunity to feel useful, and that their lives have made a difference.

I realize that if medical science/research begins to find some answers or partial answers to ALS, they might want to dial back such jettisoning of protocol…but for now, it remains a terminal disease, and honestly, for those who are diagnosed quickly, PLEASE oh government/policy folks…let them take part in research! It could mean so much for all.

I must conclude by saying that we did have an amazing “therapeutic touch” worker from our local hospice, who came once a week or so, and she was wonderful.

We also had incredible support of friends, neighbours, family. My memoir is part prose and part free verse, so I’ll conclude with sharing one such “poem” about food:

Food

Just shows up

In the fridge, the freezer, on the wide doorstep out front

foil-wrapped, with a note on top

The last twelve weeks, no planning

on some anonymous person’s part

yet never too much or too little. Sometimes

people say “I’ll do Tuesday…except

when I’m away,” and even then

it works

In that time I cook only twice—pizza

and barbecue hamburgers

two family favourites that leave me hungry

to create, but that time will come

In the meantime

this

is a miracle

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British Columbia

Michael David Sands, Maple Ridge

Mike loved life. He loved having fun and making people laugh. He was easy going. He was a proud dad, and a new granddad. He was active, athletic, an avid runner—and fast. His baseball teammates called him, Wheels. He loved stealing bases and even home plate.

Mike worked two jobs as a registered nurse. He quit working on March 7, 2011, the day he was diagnosed with ALS. After some of the shock and deviation of the diagnosis wore off, he began his quest to fight the effects of the disease. Mike made changes to his diet and exercise routine among other things, but what he needed most already existed within himself: an unwavering faith, a very positive attitude, a wonderful sense of humour, and courage. That is what inspired me to start a blog. I called it ALS With Courage.

My blog was a great way to keep friends and family informed of Mike’s constantly changing condition and it was also a great way to reveal his incredible spirit. But over time, it became so much more. It became a ministry, it became therapy for me and it became a collection of lessons—including the lesson of letting go. Mike let go of working, walking, talking, eating, moving, and slowly he let go of breathing. And slowly I let go of him.

During the last eight months of Mike’s life, I wrote a book. In it I expand on the stories from my blog, including posts Mike wrote. I focus on Mike’s strength and determination, on our hope and faith in God, and the sorrow and joy of learning to let go. The book is called, Hold on, Let Go: Facing ALS With Courage and Hope.

I continue to write about Mike and tell about his fierce determination, his rock-solid faith, and his hope, bravery, and contentment in the face of death. A hero to me, our children and family—we are forever changed and extremely blessed to have had him in our lives and to have called him ours.

I have met many people with ALS and most of them are like Mike: brave, positive, humorous, determined, strong… heroic!

Michael David Sands (1962-2015)

His glass was always half full. Lessons to be learned from this courageous man: Give thanks in all circumstances. Have faith, be hopeful, and love deeply. Talk is cheap so walk the walk. Be generous. Never give up! And if you don’t have a napkin, just wipe your hands on your socks (he always work knee-highs).

Our beloved son, brother, husband, father, granddad, uncle, nephew, cousin, and friend was called home to heaven on Monday, January 5. His chains are gone, he’s been set free. He’s doing cartwheels now with Jesus and enjoying steak dinners and fettuccine. Mike battled ALS for four years with brilliance, and when the Lord called him to give up the fight, he humbly obeyed.

A friend says, “Though his earthy body may have lost the battle with ALS, his spirit conquered it tenfold.”

Mike will be dearly missed, but his lessons live on forever!

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Ontario

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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Manitoba

Doreen and Robert Dick, Pinawa (written by Nancy Chapel)

Since February 2002 the Whiteshell Cross Country Ski club has hosted the annual Doreen Dick Fortitude Ski Tour. In 2013, the ski club honoured the memory of both Doreen and Robert Dick, who were a vital part of our ski club and community by hosting the first Doreen and Robert Dick Memorial Ski Tour in support of the ALS Society of Manitoba. The event which brought out 55 skiers who raised 8, 213.00 for Manitobans living with ALS was considered a success and The Whiteshell Ski Club has decided to run a modified version of the memorial tour and fundraiser as an annual event.Doreen and Robert Dick both grew up in Dorval, Montreal. In 1969, the Dicks together with their children; 5 year old Douglas and 6 month old Nancy moved to Seven Sisters Manitoba where Robert worked for Manitoba Hydro.

Doreen soon became an active member of the Whiteshell Cross Country Ski Club. She taught Jackrabbits, and as a competitor, represented Whiteshell and Eastman in such communities as Snow Lake, Thompson and Riding Mountain. Robert, though not the competitive skier that his wife was, also began skiing and helping with the development and maintenance of the Whiteshell Ski Trails.

In 1994, a couple of years before Robert’s retirement, Robert and Doreen moved to Pinawa. In addition to skiing they enjoyed golfing and gardening. Robert raced sail boats and Doreen volunteered at the Pinawa Hospital.

In July of 1999, Doreen began having problems with slurred speech. Doctors were concerned that she might have had a stroke, but when that proved negative, other tests were done. In November of that same year she had a preliminary diagnosis of ALS (Amyotrophic Lateral Sclerosis) also known as Lou Gehrig’s disease. ALS is a rapidly progressive fatal neuromuscular disease in which nerve cells die and leave voluntary muscles paralyzed.

Despite her deteriorating health, in February of 2000 Doreen joined other Whiteshell Ski Club members on a tour, which she suspected would be her last, of the English River, Jones Graham, and Orange Trails, stopping at both cabins for rest and refreshments. The total distance was approximately 16 kilometres.

Doreen’s suspicions were correct, this was to be her last major ski tour. Her health deteriorated rapidly over the next few months. She began to have trouble swallowing and in April of 2000, at 59 years of age, she had a final definitive diagnosis of Bulbar ALS. Bulbar ALS is a specific type of ALS where onset symptoms are in the speech, esophagus, and respiratory systems.

In August of 2000, Doreen could no longer swallow and needed a feeding tube. As she had lost the ability to speak she used a computer with a speech recognition program to communicate. The feeding tube and the fact that she could no longer talk did not stop her from playing golf that summer, or from interacting and playing games with grandchildren, Madison, Aidan, and Riley via computer. However, her health continued to deteriorate rapidly. With the help of community volunteers and their children, Robert cared for her at home for as long as he could. But in July of 2001, when she required a ventilator to breathe, it became impossible for him to care for her at home, and she went to live at the Riverview Health Centre in Winnipeg. Robert maintained his home in Pinawa, but spent four days a week by Doreen’s side at Riverview, taking her for walks in the neighbourhood, going on tours arranged through the centre, visiting with their children and grandchildren and helping with her general care.

In the spring of 2007 Doreen could no longer use her computer and her only way of communicating was with her eyes. When even that became difficult for her, she, through her own choice, was taken off the ventilator and passed away in September of 2007.

Just prior to Doreen’s death, Robert and Doreen’s daughter Nancy Chapel, her husband Ben, and their three children moved to Pinawa. With his son Douglas and daughter-in-law Bev being nearby in Winnipeg, Robert was able to take comfort in spending time with his children and grandchildren as he adapted to a life in which he was no longer a husband or a caregiver. But within a couple of years, in 2009, Robert began noticing changes in his body. He had trouble doing simple tasks like tying his shoelaces, and experienced general weakness in all his extremities. He began to suspect that he too might have ALS. As ALS is a very rare disease (with only 1 or 2 people out of 100,000 having it) family and friends thought this to be a statistical impossibility. In the spring of 2010 he was admitted to the Pinawa Hospital with pneumonia and needed a bipap mask (which is a less invasive form of ventilation) to breathe.

After several months of testing, in June of 2010 Robert was diagnosed with limb onset ALS disease. With the help of his children, home care, and community support Robert stayed in his home for as long as possible. He still enjoyed his garden, so Nancy, Douglas, and some of Robert’s friends and neighbours planted and cared for it in just the way he wanted. In April of 2011, when he was no longer able to feed himself, he was moved to the Whitemouth Personal Care Home where he stayed until he passed away on June 19th, 2012.

No one knows the cause of ALS disease, or how this married couple both contracted the disease. Neither are they the only people from Pinawa, or the Whiteshell Cross Country Ski Club, who have been afflicted with this disease. David Johnson, son of Harry and Ellen Johnson, who lived in Pinawa as a child, and was also a Whiteshell Ski Club Jackrabbit contracted ALS at the age of 41. At this time he was living in Kelowna with his wife Shani, and teenage children Josh and Ashlea. Some Pinawanians will remember donating money, via the Pinawa Christian Fellowship and other channels, to help David and his family deal with the financial difficulties they incurred as a result of the disease. David died of ALS in 2010. (See David’s story as told by his father on this website).

As a way of paying tribute to Doreen and Robert Dick, as well as a means of helping people such as the late David Johnson and his family who have been afflicted by ALS, the Whiteshell Ski Club invites you to join us in our memorial tour. All donations will go towards supporting people in Manitoba who are living with ALS.

Ski tours of varying lengths will be made available for beginner, intermediate, and advanced skiers. Multiple guides will allow participants to ski at a comfortable pace.

As skiers, we in the Whiteshell Cross Country Ski Club love to see people get out on their skis, but if you don’t, or can’t ski, please consider supporting those who are participating in the tour with your pledges. Tax receipts are available for donations over $20.00. Pledge forms can be downloaded from this site as well.

The 2016 tour began with Nancy Chapel – daughter of Doreen and Robert Dick – giving a brief presentation on ALS disease at the Pinawa Club. Following this, 15 skiers set off on tours of varying length and difficulty and later returned to the Pinawa Club where they met other supporters for dinner. The Pinawa Club served a special from which $2.00 for each dish ordered went to the ALS Society. In total $1,064.00 was raised for the ALS Society of Manitoba.

The following is a copy of the presentation given by Nancy Chapel in Feb 2016:

I would like to first thank everyone for coming out for the 4th Memorial Ski Tour in honor of my parents, Robert and Doreen Dick.
My parents both passed away from ALS, better known as Lou Gehrig’s disease. Those of you who knew my parents know that they both embraced life to the fullest, and after they were diagnosed, they lived with both courage and dignity. For those of you that did not
know my parents, I have printed up a copy of their story from the Whiteshell Cross Country Ski Club website which I will leave here.

For those of you who may not know what ALS is. Amytrophic Lateral Sclerosis is a neurodegenerative disease where the nerve cells that control your muscles die. The “living wires” that connect your brain to your muscles degenerates, leading to a loss of mobility, loss of speech and eventually impact the ability to breath. It does not affect
involuntary muscles such as the heart, does not affect the brain, or sense of touch, so you are essentially “trapped” within your own body.

In 2014, the Ice Bucket Challenge, which I am sure most of you have heard of or even participated in, made international headlines and raised 100 million dollars to fund research. In Canada 26 million dollars were raised, of which 1 ½ million dollars was awarded to researchers right here in Manitoba.

On January 28 of this year, there was a major research breakthrough published by Oregon State University in which they were able to halt the disease progression in one type of mouse model, allowing the mice to approach their normal lifespan of 2 years. Without treatment, the mice would die within 2 weeks. It is not known yet if humans will
have the same response, but researchers are moving as quickly as possible toward clinical trials.

When my mom was initially diagnosed almost 15 years ago, there were around 55 people living with the disease in Manitoba. Today, there are approximately 300 people living with ALS – 9 of those are in the North Eastman region. When I go out to ski today, I will not only be skiing in memory of my parents, but in support of those currently
affected by ALS.

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Marty Hatlelid, Ladner (written by Alison Acheson)

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