Canada’s ALS Stories
We believe that sharing the stories of Canadian families dealing with ALS, or who have lost someone to ALS, is an important way in which we can amplify our voices and drive scientific, medical, financial and legislative breakthroughs in the search for treatments and cures.
The stories below speak to how ALS impacts not only the individual, but also families, friends and entire communities.
Our goal is to collect at least 100 stories from Canadian families. Share your ALS story by emailing Diana Rogers
Laura Skapin (written by Jennifer Hermann)
For my Mom, Laura, it started with cramping and weakness in her hand. It was assumed by her doctor that it would naturally be carpal tunnel syndrome, due to the fact that my Mom was a legal assistant for 30+ years and that included a lot of repetitive hand movements at a desk for prolonged periods. Instead of getting better, it got worse. She eventually lost use of that hand and then experienced falls while out walking her dog as her next symptom she experienced was foot drop.
February 15, 2017 is a day no one in our family will forget. She was given the diagnosis of ALS. My parents were told to go make memories, so make memories is what we did. This included a trip to Maui, many family gatherings, a special visit in her home with her favorite singer and even a visit to a wolf rehabilitation center (Mom loved wolves).
Our family always found it strange how the diagnosis was delivered and that was it. The rest of the time with doctors and other staff was symptom management. So we were left to research various diets, supplements, protocols and drug trials going on that demonstrated some success.
My Mom tried anything we came across online that seemed to help other PALs. Over time, my parents kitchen countertop was loaded with supplements. My Mom took the mindset that she would try whatever it takes to spend more time with her family.
Before it’s approval in Canada, we found a way to import Edaravone from Japan into Canada. She was able to have infusions done at South Health Campus, in Calgary, for several months before it became too difficult for her to make the trip daily. By then, she was extremely weak and lost use of both legs and her left arm.
After some time, she decided it would be okay to stop the infusions as it was putting more stress on her than necessary. For 5 months following that, she continued to decline. ALS stole her ability to walk, to move her arms, to eat, and was taking away her ability to breathe on her own. January 21, 2019, she took her last breath while in hospice care. She gave it all she could with the hope she could watch her grandchildren grow up. ALS stole my Mom from us, and it stole a wonderful Nana from her grandchildren.
Something needs to be done to open up access to treatments asap so no one has to deal with ever again. Although my Mom is no longer with us, our family is still dedicated to helping find a cure for this awful disease.
Jessie Ravnsborg, Calgary (written by Heather Lucier, Calgary)
In February 2018, my 35-year-old daughter, Jessie, headed to Sierra Leone, Africa. Jessie had recently graduated with a Masters in Leadership and had gone to visit a friend and volunteer teaching a management course to young Sierra Leonean teachers. Outgoing, independent and passionate about education, Jessie was in her element. The mother in me was so proud to see her step out but also nervous about her being halfway around the world.
Prior to her departure, Jessie had experienced some weakness in her hips, but her physician and physiotherapist had given her the green light. Near the end of her trip she called me to say that suddenly her hand was losing dexterity. I suggested she come home immediately.
Two days of traveling later, Jessie landed in Calgary and I took her straight to Foothills Medical Centre. After many tests, she was eventually diagnosed with sporadic limb onset ALS. A total shock for her, and me. Yet, four hours after being told she had ALS Jessie told me: “Mom, quality of life for me is meaningful engagement with people… so I will not go on a ventilator nor have a tracheostomy. I will likely choose Medical Assistance in Dying (MAiD) when I feel it is time.” That is a lot to take in for a Mom. It amazes me to this day that my daughter knew so solidly what quality of life meant to her and what her final wishes were.
Initially Jessie wanted to return to her work and to her network of friends in Kelowna BC, but the area did not have an ALS Clinic nor the supports that she needed as her ALS progressed. During her one-month stay in hospital, I renovated and reorganized my condo to safely accommodate the equipment to support her: a commode-accessible shower, a lift chair, hospital bed and wheelchair. This time also allowed Jessie and I to start processing her diagnosis emotionally in a supportive environment.
Jessie opted for edaravone/radicava infusions to (hopefully) slow the progression of the disease. The Alberta Health Service (AHS) ALS Clinic provided exceptional logistical and emotional support, along with the AHS Day Medicine infusion area. Our network of supporters, who we were so grateful for, rallied around us in many practical ways. Within just four months of her diagnosis Jessie was totally dependent on a sit-stand lift and wheelchair; had just 45% lung capacity; and was using BiPAP 12 hours/day. It was difficult to see her, active just months before, learn to navigate a new way of daily life.
Our biggest challenge came in navigating homecare. We expended significant energy managing public (AHS) home care services. We eventually hired private home care to supplement what was lacking with public home care. This is a costly decision, but the other option was either long term care or hospice care… of which neither were acceptable to Jessie nor me.
A year into Jessie’s disease her lung capacity was 28%. She was more dependent on BIPAP and started using a sip-ventilator. Programs such as Alberta’s Provincial Respiratory Team and the incredible ALS Society of Alberta loaned us equipment that otherwise would have been very costly, and their technical/logistical support ensured Jessie’s needs were met.
When Jessie was diagnosed, she said “I wasn’t a bitter angry person before ALS so be darned if ALS turns me into one”. Jessie’s daily mantra was “I choose joy each day”. And she did! She spent time with her family/friends; we toured Montreal; she attended concerts, plays, and hockey games; she met and became friends with her favorite NHL’er Brian McGrattan & his family; she saw President Obama and Oprah speak; and even won the Dave Kelly Live Inspiration Award. She said “Mom, I’ve lived more in 20 months than I likely would have in 20 years!” I hold onto these moments and memories.
On a calm and love-filled Saturday (November 2, 2019) Jessie bravely chose life on her terms by utilizing medical assistance in dying. After 20 months of living with ALS Jessie looked me in the eyes, said “I love you” and went towards the brightest light.
Those who have journeyed through terminal disease understand grief starts the day of diagnosis. What Jessie taught those around her was how to find joy within that journey of grief. Less than a year later, I am still devastated by the loss of my only child to this insidious disease and yet, my heart is filled with all the joy Jessie brought to my life through each day of hers.
Sara McDonald, Kelowna
Initially, I went to my GP after the 2019 Christmas holidays when I noticed some subtle slurring in my speech and wondered if I had had a stroke. In January 2020, I was diagnosed with ALS by Dr. Daniel Fok, a neurologist who recently moved to Kelowna. Kelowna General Hospital (“KGH”) is extremely fortunate to have Dr. Fok as he specializes in neuro-muscular disorders and hopes to establish a clinic at KGH.
I have ‘bulbar onset’, which means that my symptoms involve speech and swallowing problems, as opposed to the more common ‘limb onset’ in which symptoms begin in arms and legs. It is now a waiting game to see where the symptoms progress in my body and how quickly. In January 2020, Dr. Fok gave me an estimated time frame of 2-3 years before my life ends. Through the CAYA organization I have finished ‘voice banking’ and ‘message banking’ to provide communication aids. My speech now is difficult to understand and very tiring for me so I have started to use my ‘voice’ on my mini iPad. My ability to swallow and chew is becoming progressively worse. Last month I had a feeding tube placed and now use that daily to hydrate and supplement my diet. I live in constant dread of choking on liquid, food or my saliva.
I was absolutely shocked at my diagnosis. This is not what I had expected for the rest of my life. I am single, so I have to organize my home, look after myself and plan for what life with a terminal progressive disease will be like on my own. I am disheartened at the lack of clinical trials that are accessible to BC residents; our province is at the back of the pack when it comes to ALS treatment and research. I want to participate in clinical trials, but there is a lack of opportunity. This surprised me – in a province with so much, we should be doing better. It shouldn’t feel so hopeless.
I am very fortunate to have a supportive family. My adult daughter, with her son and partner will move into my home late this month to provide care when I am no longer able to look after myself or be financially independent. My other children and my four siblings have shown outstanding support. But I don’t feel that the government of BC is showing anywhere near the kind of support that I and other ALS patients desperately need.
My blog can be found here: https://sarasalslife.wordpress.com/
Tony Volpatti, Revelstoke (written by Aaron Volpatti, Vernon)
In February of 2015, my dad, Tony, joined me on the annual father/son road trip while I was playing professional hockey. We were boarding our plane from LA and he wasn’t able to lift his suitcase into the overhead bin. Since my dad was a big strong man who worked long hours with Canadian Pacific Railway, we poked fun at him and attributed this to him aging. Nothing more was thought about this minor incident, but these problems started happening more frequently throughout the year, and he was ultimately diagnosed with ALS one year later. This was a crippling diagnosis for my dad and our extremely close family. He was 55 at the time of diagnosis, and was forced to retire from CPR the next day to live what we thought could be his last quality 6 months of life.
Today, he has three grandchildren between my sister and I, and my mom will be retiring this year to help care for my dad. Thankfully, his progression of the disease has been relatively slow, as he was diagnosed more than 4 years ago, but has most likely had ALS for 5 years. While he is very thankful he had a couple great years, he is now unable to care for himself full time. He has very limited use of his arms and needs help with mundane daily tasks, and his speech is starting to wane. We are in the process of getting my family moved into a condo and potentially selling the house that my dad renovated with his bare hands for 10 years while working full time.
My dad has participated in some clinical trials, but nothing has helped his symptoms. He has since focused his time and energy around his family. Since he gets extremely tired after small tasks, his energy needs to be carefully allocated to what he deems most important. That being said, my dad is very willing and would like to be part of any promising research to help fight ALS, but he is very firm that there needs to be treatment in BC for local residents living with ALS. Time is ticking away for patients living with ALS, and there needs to be more options in BC so we don’t have to waste our precious time travelling around the country or even the globe.
Covid-19 just exacerbates the health risks imposed by patients with ALS flying, and compounds the point of wasted time that could be spent with family, especially if there are quarantine implications due to this travel. For patients that are currently part of clinical studies, and are perhaps noticing a beneficial difference in their health, how are they supposed to continue with Covid-19 restrictions?
Tania Hennigar, Salt Spring Island
I am giving every effort every day, to find and live out a new life purpose. In, what I call my pre-diagnosis life, I was focused on helping breast cancer survivors heal what many referred to as their “butchered bodies” by restoring the areola and decorating mastectomy scars with beautiful art. I was a specialty certified medical tattoo artist who found purpose and passion in helping others on their healing journey.
That has not been my reality since my diagnosis in January 2019. Now, I face each day with uncertainty and in a state of inertia as I feel paralyzed and confused. I feel like I should fight. I want to fight. But everyone tells me it is futile. When the Neurologist in Kamloops gave me the diagnosis I was alone and in shock. I would think that giving someone the news of a terminal illness they would at least ask if they are safe to drive home.
My next experience was in the dark offices of GF Strong where I met with my new ALS “team”.
It could have been in the basement of an old high school. It was very disheartening. I was excited to be seeing a team of specialists but my mood was soon dampened and it started with the office.
While at this appointment I enquired about treatments, therapy, special diet and/or vitamins and each time I was dissuaded. They stated that the only medication available is very costly and extends life by an average of only 3 months. I was told it would be time better spent focusing on my quality of life rather than spending time and money in clinical trials or on expensive drugs. I was told to eat everything my heart desires, not to worry about diabetes or weight gain. Would their answer be the same if BC MSP covered those expensive prescriptions? Would their answer be the same if there were clinical trials available in BC and they knew we did not have to spend a life savings travel to different provinces, countries, or continents to receive them? We are being told it is hopeless. And we are being told that in an environment that reflects that notion.
I am not only battling ALS and its physical debilitations but also the emotional trauma of having a terminal illness with no cure, no treatment and no hope when there really should be all of the above. I am not alone. Please help us.
Rick Wilson, South Surrey
I am 51 years old. I am a husband to an amazing wife, Treena, and father to two incredible children, Brett and Hannah. I am an Elder at Willingdon Church in Burnaby and the CFO at BC-based BID Group.
On August 9, 2019 I received an initial diagnosis from my VGH-based Neurologist that I “most likely have ALS.” When we asked what the healing process would be, we were given zero hope and told “live your best life and get your affairs in order.” My next prescribed visit was to be in December 2019 for palliative counseling at GF Strong. Given the lack of certainty, zero reasonable alternatives presented for treatment or therapy or tangible proactive support, and having a good friend who was previously misdiagnosed with ALS, I elected to pursue a second opinion. In mid-November 2019 I went through testing at the Mayo Clinic where a diagnosis of ALS was confirmed. Prior to my experience at Mayo, I had always believed that we had a superior medical system. I assure you there are vast differences in the level of care and expertise between our two experiences and it was the first time I saw just how wide the gap truly is.
I am in early stages of progression and, outside of the effects of ALS, my lifestyle and health have been and remain very good. I have approximately 80% of my base physical functionality with noticeable muscle atrophy and lost dexterity in my hands. I am walking slowly, without any assistance and have full respiratory capacity.
We are thankful for the team at the Mayo Clinic who introduced us to the head of their ALS research department. It was that discussion that sparked the only source of hope, through therapeutic means, that we had received. Until this letter, that dialogue and subsequent correspondence led us to two of the key sources of proactive self-advocacy we have employed so far: 1) sources of research for both holistic and medical treatment/promising trials (all outside of Canada); and 2) the Healey Platform Trial being led by Dr. Merit Cudkowicz at Mass General in Boston.
My wife, Treena, who has no medical training whatsoever, has been a research warrior and her efforts have led to the bulk of the learnings we have accumulated about fighting the progression and reversing the effects of ALS. In fact, many of these my Neurologist hadn’t heard of or didn’t have a working knowledge of let alone making any suggestion about the limited knowledge she had as a starting point for us to try.
Through Treena’s relentless research in combination with the guidance of a skilled local Naturopath and the assurance that God will continue to guide us down the right path, we believe we are finding the right combination of holistic supplements and therapies to slow progression, with all hope that will last until a cure can be found and be made immediately available. Today I take 18 different supplements, some every waking hour.
All of these efforts are at a personal, non-tax-deductible expense of over $1,000 a month. Unlike other heavily publically funded disease and self-imposed harm therapies, people with ALS are personally funding treatment. One of the constant mental battles is the weight of balancing both the financial and emotiional cost of fighting to live with the question of how far can we afford to go before using all of our family’s future source of financial resource.
I am grateful to have been recently accepted into the Healey Platform Trial to be conducted at the University of Washington starting in June 2020. All the time, travel and whatever else is required outside of the actual trial therapy will be at personal, non-tax-deductible expense over the initially estimated 24-week period.
The Healey Platform has expressed interest to include Canadian universities such as UBC and McGill in the platform trial. Sadly, funding has not been made available for this important work. Let’s show them that BC will lead the way by funding and inviting the Healey Platform Trial to UBC and/or other BC universities.
New therapies are near. One of the most promising is a stem cell treatment called Nurown® by Brainstorm Cell Therapeutics (https://brainstorm-cell.com/pipeline/#als). When these and other therapies are made available, people with ALS do not have the luxury of waiting for either the lengthy regulatory process nor the interprovincial bartering with drug companies for pricing. We plead vehemently for a change to these processes to allow for their immediate distribution to those suffering with this insidious disease. Please ask yourself if you or a family member were afflicted and you knew there were life-saving treatment, what would we need to do differently in BC and Canada to ensure it were made available?
Not only are we experiencing the isolation of daily progressing into a disease-induced cocoon where our perfectly functioning minds are trapped inside of a functionally dead at-will body, but we are fighting alone in all respects to find treatments and a cure. We desperately need your help.
BC is leading the way globally in Spinal Cord research and treatment thanks to the efforts of heroes like Rick Hansen, nationally with Cancer treatment and care and on so many other areas of social value. Like we have with COVID, let’s show the rest of the country that BC will not only face the health challenges in front of its citizens but will lead the country through them! We can beat ALS together. Let’s go!
Bob Bryant, Surrey
I am 64 years old. I grew up in Richmond and eventually married and moved to Surrey to raise my family. I have two grown children and four grandchildren. We are a very close family and fortunately I have a lot of support from my wife so I can still live a reasonably normal life.
I worked my entire career in the development industry, building mostly residential homes. The last 15 years of my career I worked as Senior Vice President of Construction for Polygon Homes, a local homebuilder.
I was very proud of what I did and I miss it every day but my life has changed and I now have a new path to follow.
I was initially misdiagnosed with neck issues and had surgery to remove two discs in my neck. When this didn’t work I kept pushing for answers and was finally diagnosed with ALS in July 2018. I will never forget the horror of hearing this diagnosis. I was told to get my life in order and that I had a very short time to live. The doctor said to travel while you can because soon you will not be able to. Little did I know that some people live for many years with the disease, and some people do not of course. With very little answers and more questions, I started doing as much research as I could.
I stopped working at that point as my heart was not into it anymore and I felt that I was getting weaker. Quite honestly with what I was told I thought I was going to die within a very short time.
I traveled to Japan to get medication (Edaravone) that was not yet approved in Canada. I travelled to Seattle, Washington to meet with an ALS expert and it was there that I was told, finally, what type of ALS I had, and what the prognosis was for me.
It felt good to get answers and it was a very professional environment in Seattle, which is something that I feel every ALS patient deserves. I applied for many clinical trials outside of BC but was turned down on all of them for various reasons. Even though I had a 50% chance of getting a placebo and I would have to pay for all my travel, I was still willing to take the chance had I been accepted as there are not many options.
I also went to an ALS seminar in Salt Lake City Utah where I met people with ALS from all over the world that had come together with similar stories of hopelessness. All looking for answers and all willing to try anything rather than just giving up.
It has now been almost two years since my diagnosis. My life has changed forever, my arms are getting weaker, but I still have a very positive attitude and outlook as I know that I could live for a while yet. I take lots of different treatments which will hopefully help me to live the rest of my life with some quality, and hopefully one day we will find appropriate treatments to keep this horrible disease at bay, as is the case with diabetes and other serious illnesses and conditions.
Jeff Derby, Cloverdale
I was diagnosed with ALS on July 11, 2018. I was 59 years old. After many months of seeing several specialists I was given the diagnosis at the ALS Clinic at GF Strong. Although it was devastating news, my family was with me and they became my research team. With little assistance and hope / future being offered by the ALS Clinic at GF Strong, my family compiled a list of clinical trials and treatments that we proceeded to follow up on. I have been in a clinical trial out of the Swedish Medical Center in Seattle, Washington, which we believe has helped slow my progression. The Swedish Medical Center has provided me with a level of care that I just do not receive in BC, which is due to the amount of full-time ALS neurologists and staff they have at the Swedish Medical Center. I look forward to a world class facility in BC that can provide clinical trials and care that is deserved in our great province.
I have had ALS likely for more than three years. Although the progression in my arm has moved slowly, over the past six months I have had more difficulty breathing at night and now use a bi-pap machine. I maintain a daily routine of light fitness and breathing exercises, which helps but it is a daily fight.
Rob MacLean, Pitt Meadows
I was diagnosed with ALS on August 13, 2019 (one week after my 51st birthday). A week after my diagnosis, I travelled to Montreal to see if I met the criteria for a clinical trial. After being accepted into the clinical trial, I had to travel to Montreal every 2 weeks for the first 3 doses and then have continued monthly after that. Each visit I receive the drug (or placebo) via lumbar puncture.
Due to the Covid-19 pandemic, I had to travel to Montreal on my own recently for my appointment. My wife could not travel with me as there is now a restriction to self-isolate for travel within Canada. I now travel with masks, gloves and hand sanitizer so that I can somewhat safely travel to and from Montreal. Given that I am immune compromised, it is very risky for me to be travelling on airplanes/staying in hotels at this time.
Since returning home I have had to remain in self-isolation in a downstairs bedroom in our house. I can’t interact with my family. My parents and in-laws, who are all in their 70’s, can’t visit. As I am now in the extension study in Montreal, I am expected to go to Montreal every two weeks for my next two visits. If the regulations remain in effect, that means I will have to self-isolate the entire time in between visits. This is a huge burden on me and my family. If I were receiving the treatment in Vancouver the self-isolation would be unnecessary.
My hands and arms have continued to decline since last summer. My wife and kids help me with putting on socks, shoes and doing up zippers. I used to enjoy cooking but can no longer help. My wife now cuts up my food for me.
One of my favourite hobbies was golfing but I am no longer able to do that. I’m finding it harder to speak for any length of time and am self-conscious, so I find that I am not interacting with many people/friends anymore. I haven’t worked since last April as my constant pain with ALS has been debilitating. I have seen numerous doctors and to date, have not been able to manage the pain. It’s terrible enough having ALS but to be in constant pain is worse. It would be nice to get some sort of control of the pain so that my quality of life could be better.
Leanne Yacyshyn, Langley
I am a 46 year-old wife and mom to two teenagers. I grew up in Langley and now live there with my family. I taught elementary school for about 16 years and due to ALS was forced into early retirement at the age of 43.
I was diagnosed in December 2016 by the ALS Clinic in Calgary after having symptoms for six months. My family moved to Calgary in 2012 for my husband’s job, but returned to BC after my diagnosis so that we could be closer to family.
I began attending the ALS Clinic at GF Strong once I moved back and was so surprised by the outdated and depressing facility. Calgary’s clinic is located in a brand new hospital with beautiful views and modern equipment. Such a contrast to the facility in Vancouver. I could not believe that an ALS clinic would not have a respirologist on site; so ridiculous when breathing is one of the hallmarks of the disease. In Calgary, not only is there a respirologist at the clinic, but all of the testing is done there as well. I currently have to go to two different locations to see a respirologist and to get testing done. This is not only inconvenient, but with the mobility issues associated with ALS it can be near impossible.
My symptoms began with weakness in my right hand and have progressed over the four years to include no use of my hands and arms. I am unable to walk, speak or swallow and am therefore fed through a g-tube. I use a bi-pap machine a few hours a day to support my breathing. I communicate and type entirely through a tablet controlled by a sensor that sticks to my glasses. I move my head to hover over the letter I want. As you can well imagine, a letter like this one would take me hours and hours to type. In addition to my family, I have four part-time caregivers who help me in all aspects of my life – bathing, dressing, brushing my teeth, feeding, transferring, etc.
I realized at my first ALS clinic appointment that I wouldn’t be given any hope or ideas on how to possibly slow my progression of the disease. I went to the clinic for a year before deciding it was too depressing to just list off things that I could no longer do, and so I quit going. Sadly, I had to hear about exercises to help with facial muscles and speech through a Speech Language Pathaologist in the USA, as well as the use of voice banking to record your voice. I did not get any information on these things at the clinic here and by the time I researched myself it was too late, my voice was not intelligible enough to bank. I occasionally see the clinic’s Occupational Therapist and Physical Therapist; they are awesome and even help me a lot through email. I have done a lot of research in the years I have been living with the disease and I have spent a lot of money on testing, supplements, alternative therapies and traveling to Seattle and California for treatment and some hope.
I never anticipated having my life cut short. I always took for granted that I would see my kids graduate from high school and university, get married and have kids of their own. I believed that I would see out my career to the end and then happily retire as a volunteering, yoga loving, babysitting grandma. Then ALS happened, and unlike being diagnosed with cancer or heart disease, there is no discussing treatment options, you are simply left to get your affairs in order and wait to die. It’s infuriating, even more so with the COVID pandemic going on. ALS patients are constantly told that there is no money in the budget for research and yet our government has unlimited money in the coffers for the coronavirus. In the USA, the FDA won’t fast track the NurOwn stem cell treatment for ALS (after already being in trials for ten years), even though it has proven effective, because they claim it may not be safe, and yet they have just approved fast track status for a COVID-19 stem cell trial under compassionate use. I would like to know where the compassion is for ALS patients and their families. ALS truly is the forgotten disease.
My blog is found here: leanneislivingwithals.com
Marty Hatlelid, Ladner (written by Alison Acheson, Ladner)
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.
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.
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.
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:
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
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
is a miracle
copyright © 2020 by Alison Acheson. From Dance Me to the End: Ten Months and Ten Days with ALS. Reprinted with permission of TouchWood Editions
Ron Holiove, Ladner (written by Leah Holiove, White Rock)
My dad was the strongest man I know, he was a big burly guy when I was growing up and I was his daddy’s girl. He took care of himself and always ate great and exercised well into his 60’s. Then one day he was working on his van and he dropped a tool and he had a hard time picking it up. He then started to lose weight in his left arm and the use of it as well. After around a year and a half he finally went to see a doctor because my family and I kept bugging him to get his arm looked at. He went to his doctor who then sent him to hospital and they determined he had a couple disks in his back that were probably pinching a nerve and that was what caused the paralysis of the arm.
They had scheduled a surgery. But we thought he should get another opinion so my brother took him to VGH and he saw a neurologist who was awesome and diagnosed my dad with ALS. That day I was working at a radio station at the time and was about to go live on air when my brother called me right away and told me the devastating news. I was in shock, I knew what ALS was because just the summer before the Ice Bucket Challenge was everywhere and we talked about it on air and we did the challenge at the radio station as well.
A week later my brother and I then took my dad to GF Strong for an appointment to find out everything we could about this horrifying disease. Once we got there we were shocked at the fact it was in a basement of a building and it was so dark and dismal. It truly was depressing but my dad was positive as he sat at the reception area and struck up a conversation with a man beside him who looked to be in rougher shape. My dad asked how he was doing and said “it’s going to be okay” to him. I tried so hard not to cry at that moment. They then ushered us into a little room where we meant with a neurologist, a therapist and a physical therapist. I sat there as I saw the hope fade from my dad’s eyes as they took turns telling us how there is really nothing they could do and that he had between 2-5 years left. I kept asking about clinical trials and medicines, which I was told there were no trials currently and I would have to do research on my own to see if there were others he could sign up for in other countries. We were told about a drug that would only extend his life by 3 months. 3 months, that’s it. The therapist was a nice lady and could see the devastation on our faces and she tried to smile and tell us that we could get equipment to help my dad as his disease progressed.
The three of us left there and didn’t talk all the way home to my dad’s house. I tried not to cry the whole time because my positive dad now lost all positivity. That crushed me. I told him I would search online for him and see if I could find something, anything. I was shocked in my research about how UNDER FUNDED this disease is and how the facilities here in BC are so sub par compared to other ALS facilities within Canada and the world. The government of Canada needs to do better and not forget these people of all ages afflicted with this deadly disease, this life sentence. They NEED to do WAY more!
This was in February of 2015 when my dad was diagnosed, he died in May of 2015, three months after his diagnosis. We thought we had at least a few years, but unfortunately we did not. I truly hope the government will do better, there is no other option, give people hope, please.
JP Poirier, Gibsons (written by Nicole Poirier)
It can start with twitching and weakness in your arm or leg. You might think it’s nothing. That it will pass. The twitching for JP starred December 2018, who noticed the twitching in his arms. Several doctors said it was stress and would pass but he was unable to control the twitching and was becoming limited in what he could do physically. In the beginning of March 2019, JP went through a battery of testing which included MRI and CT scans. JP and I met with a neurologist to go over the test results. The devastating news of the preliminary diagnosis from the specialist is that JP has a neurological disorder, a Motor Neuron Disease, possibly ALS (Lou Gehrig’s disease).
In April 2019, JP and I met with the ALS clinic at GF Strong to follow up and get another opinion. JP was rather healthy at this point and walking into the ALS Clinic in the basement of GF Strong made us both depressed. I will never forget the day our lives were shattered, and the Doctor told JP he has ALS.
In the 18 months since his diagnoses, we have seen huge declines in JP.
Here is a snapshot of his ability now compared to last year. All the “little Deaths” the disease is taking away from his daily life.
- He can no longer wash his hands, scratch his head, rub his eyes, blow his nose, shower on his own, or brush his teeth.
- He cannot put on any clothing requiring him to zip or button, putting on socks, pants or a shirt requires assistance.
- Tie or pull on his shoes,
- He can no longer Manipulate his phone, use the touch screen or put on headphones.
- He can no longer hold a piece of paper or turn the pages.
Simple things in life we take for granted, simple things you do in your everyday life are now a battle for JP, something as simple as scratching your face or answering your phone to talk to a friend is something JP can no longer do. He now needs someone to feed him daily as he cannot do so.
The biggest change this summer has been his ability to speak, he gets hoarse and sore when he tries to speak, and his speech is slurred and it is very difficult to understand him on some days. He is still walking but with a drag in his foot and starting to lose muscle tone in his legs.
We were told there were no trials he could participate in and no drugs to help slow his system. We need better than this in BC. ALS patients should not just be told to go home and left to die. We need action now as time is running out. We need our collective voices to #EndALS.
A GoFundMe campaign that has been set up for us can be found here.
Ryoichi Hosoya, Squamish
Written using my eye gaze device
My name is Ryoichi Hosoya. I was originally from Gunma, Japan and obtained my Canadian permanent residence status in 2005. I was diagnosed with ALS on March 9, 2019. Before my diagnosis, I had been working for Whistler Blackcomb Resort, British Columbia since 1997 as a ski instructor. I also met my wife Winnie in Canada and we had been happily married for 13 years. Winnie works as a real property paralegal with McCarthy Tetrault LLP in downtown Vancouver.
Since my diagnosis, both of our worlds had been thrown upside down. I was being told I am a rapid progressor. I needed to start using a cane a month later, changed to double walking poles in May. By August, I had to use a walker/wheelchair because I already had a few falls and get tired really fast. 2 months later, I was given a small power wheelchair as I was no longer able to walk. I lost my ability to walk only after 7 months since my diagnosis. At that time, I was still able to stand up with support and make a few steps to transfer to a chair/bed myself. But by end of December, 2019, I couldn’t even do that anymore and had since been wheelchair and bed bound. I need a hoyer lift to get myself transferred. My breathing started going down in July. I had difficulty swallowing and had to be very careful and slow when I eat or drink to avoid choking. My wife had to cut my food and feed me because my arms are too weak to do so. My voice started getting weaker in August 2019 and speaking was getting harder and harder for me. Winnie had to take compassionate leave from work by end of November, 2019 because my doctor told me I was at significant risk of dying in 6 months.
Since my diagnosis, our lives have been nothing short of despair. My neurologist in Canada told me there is no cure for ALS and the only drug available can only extend my life no more than 2-3 months…we felt there was nothing else we could do but to take care of my business and treasure my last days with my family.
Winnie and I spent the first two months in emotional chaos. Then I started doing research and found out about this stem cells Phase 3 clinical trial going on in the U.S. called “NurOwn” by BrainStorm Cell Therapeutics Inc. Right away I felt I still have hope and started contacting them. I was extremely lucky to be accepted as one of their 200 trial participants.
Since August, 2019, my wife and I had been traveling back and forth between Canada and California at least once or twice a month for my visits (there are total of 14 visits). Needless to say all traveling and accommodation costs are out of pocket expenses. On top of that, as my condition continues to decline, it was getting harder and harder for me to travel. I had to be lifted in and out of a plane and to the washroom on the plane. My breathing was so much weaker that I couldn’t even sleep on a hotel bed as I need to sleep elevated with my weaker breathing capacity and I needed a bed rail to help me turn and get out of bed. Those trips truly took a toll on me. It felt my decline got even faster and thought I won’t live to see spring in 2020. I cannot help but wonder why there are no clinical trials locally in B.C. for ALS? I know of someone who is able to receive stem cell treatments for his terminal cancer in B.C. but for terminal ALS patients, we have nothing in B.C.
I received a total of 3 stem cells infusion treatments in this trial. It’s like a miracle happened overnight. I was able to pick up a spoon and feed myself again the next day right after my treatment! I have had so much fasciculations and was in so much pain before (my wife couldn’t even touch them) but the fasciculations and pain were mostly gone after my treatments. Best of all is, I was able to stand up again in May and made 14 steps with my physiotherapist! I feel so great that my progression had slowed down a lot and that I see some reversals in certain areas. I truly believe I am the lucky one (50% gets real drug) who received the real drug.
I know “NurOwn” truly works as it worked on my body. For the first time since my diagnosis, I feel I have the hope to live again! All ALS patients deserves the right to access any treatments that works! We need NurOwn” approved in Canada ASAP and simultaneously with FDA approval so to give all ALS patients a chance to live!
The cruel realty is, I am now done with the trial since June and am cut off from these treatments. My progression started to speed up again since last month and I am feeling the hope I once had is being taken away again…I feel like I am back to day 1 where I have no option but to sit and wait for my own death. I don’t have access to these treatments which helps me survive or reverse my symptoms as they are not approved yet. No matter how much money I have to pay, I don’t have access…
If NurOwn were to go through the normal regulatory approval protocol, I don’t think I will live to see that happen as I believe I will be gone in less than 6 months without NurOwn. And that will be the case with many other ALS patients out there whose hope to live were crushed due to a lengthy approval process. We ask that you please help and do the best you can to give all of us the “HOPE TO LIVE” & the “RIGHT TO LIVE”. PLEASE HELP EXPEDITE THE APPROVAL OF NUROWN!
Thank you for your kindest action to all ALS patients.
Ole Jensen, West Vancouver (written by Shirley Jensen, West Vancouver)
This is our story. Sadly, my husband Ole’s story does not differ from many of the 1 in 400 people in Canada who are diagnosed with the hopeless death sentence of ALS. Ole was diagnosed at age 55 in May of 2003 and died in May of 2005.
Ole’s good health declined from him being an active person in tennis, skiing, golf, soccer, hockey and cycling. He coached our two boys in baseball, and soccer and taught them how to mountain camp and ski. We took trips to Whistler and went boating with family and friends. I have limited vision and my wonderful husband guided me and added to my quality of life by teaching me to downhill ski, tandem cycle, golf, hike, and participate fully in life. Ole was a professional engineer owning and operating his own company.
Looking back, his symptoms began in December on the beach when Ole experienced discomfort walking … followed by trouble skiing which he at first attributed to wearing a “new agonizing pair of boots”. Quivering in his legs and limping followed and a Physio thought it might be pinched nerves… but we soon realized something else was going on.
We got lucky and found ourselves in the incredible care of Dr. Andrew Eisen. Although, Dr. Eisen delivered the diagnosis and prognosis with great compassion and care, receiving the news was like being hit with a bolt of lightening. The ALS Clinic at VGH was in financial trouble and Ole promised to help make sure the clinic would remain open. (At that time, GF Strong was of little use to us; like others, we found our appointments there overwhelmingly depressing with only dreadful news to share.) Ole worked with Dr. Eisen and a team of volunteers to develop a Patient Services Committee, initiated a Patient Survey and insisted that Patients be represented on the Board of the ALS Society and that monies raised went directly to patient services and not to overhead.
We hired our own Physios, and home care people with multiple talents and ingenuity. As Ole’s speech became only a whisper, a speech augmentation person set up a microphone and speaker system so that we could hear his weak voice. Wheelchairs and other necessary equipment were adapted by family and friends.
The rest you know. ALS steadily, methodically, ravishes and tortures the body while the mind is forced to live without hope. Ole was abruptly and callously taken off Riluzole by medics who feared it would give him a stroke. Without access to clinical trials there is no hope … and victims of this disease need to live with hope due to their shortened life-span. Hope is the one thing that keeps us going. Even a sliver of hope can mean so much.
I am constantly humbled by the courageous spirits of those fighting this terrible disease. The smallest thing, breathing, turning a page, taking a step, uttering a few words, were mammoth challenges day and night.
Painfully, my boys and I are permanently scarred by repeatedly witnessing Ole’s daily traumas and struggles as we watched our brave, wise loving father and husband face the cruel tortures of this disease without hope. He lives on in our hearts and our homes.
Greg Smith, West Vancouver
I am living with my partner and four kids, ages 14 and 22. For 10 years, I have been an active investor in the BC High Tech sector. I recently “retired” from my job as I was unable to efficiently complete my responsibilities due to my ALS progression. I was previously active in life, skiing, playing squash, camping and kite boarding, with my family.
I was diagnosed with ALS on April 7, 2019. I was 51 years old. Like most people who are diagnosed with ALS, I originally looked for other reasons for my symptoms. After a month of testing other possible treatable causes, I accepted my fate of ALS. Throughout my journey, my family and I have sought out all possible opportunities to advance the science in providing a cure for ALS. I was accepted and I have been participating in the Phase 3 clinical trial of a promising stem cell treatment called NurOwn. At least once a month I have to travel to San Francisco, California with a family member to keep in the protocol. This travel is done at my own expense.
My experience with ALS resources here in BC is drastically different then my experience in San Francisco. Providing hope and providing proactive activity and treatment is non-existent at the ALS Clinic in BC. I believe this is because the disease is underfunded in BC.
My ALS continues to progress and I have been recently committed to a wheelchair for mobility, this after just one year of diagnosis. I wish the ALS Clinic measured my progression and shared their knowledge and understanding of this disease a year ago, I would have made many different decisions and taken a different pathway on my ALS journey.
Kerry Winkler, West Vancouver
I am 57 years old. I have been married for 32 years, and have 2 children (a daughter, 26 yrs. old, and a son, 24 yrs. old). I spent my career as a CA/CPA in various executive roles, most recently as President and part-owner of a business with 100 employees.
I have had the good fortune of living an enviable life – wonderful family, fulfilling career, extensive travel, and involvement in numerous outdoor activities and sports. I desperately wanted that life to continue.
My symptoms of ALS appeared in the fall of 2016, when I lost the ability to hold an edge when skating in hockey. I was diagnosed with ALS on July 5, 2017. I had gone for a nerve conduction test in the middle of the work day. I remember taking the news from the neurologist in stride, but then breaking down when I said it aloud to my wife over the phone. I remember having to keep it together at work for the rest of the day, and then sobbing with my wife on a park bench that evening. I remember the torture of telling our kids and seeing their torment.
The march of ALS progression is relentless. By the fall of 2017 I required a foot brace to assist with walking. In the spring of 2018 I stepped away from the President’s role at our company. By the fall of 2018 I could only walk short distances and required the use of a cane, and through 2019 I went from a cane, to forearm crutches, to a wheelchair.
It has been necessary for us to make significant modifications to our home to accommodate my lack of mobility. My core strength has weakened significantly, my arms and hands are weakening, I can feel thickness in my tongue, and I’m consciously aware of my swallowing while eating.
I am one of the lucky ones. In the world of ALS, I should be dead by now. With no known cures or effective treatments, regulatory processes that ignore the torturous attributes of ALS, and a void of government-funded research for ALS that is an embarrassment to our country, I fear that I will soon become yet another lost voice for urgent change to this situation. Time is my enemy.
Rosemary Slinger, North Vancouver (written by Molly Thompson, North Vancouver)
As owners of the Black Bear Neighbourhood Pub in Lynn Valley, my parents have been a valued part of the Lynn Valley Community in North Vancouver for many years. My Mom, Rosemary (Bobbi) Slinger, who was born in England, has lived in North Vancouver for over 50 years since meeting my Dad at a party in London.
My Mom was diagnosed with ALS in January 2019. Today she cannot speak or swallow. She has trouble breathing as her lung muscles are weakening. She is fed through a feeding tube and requires 24-hour care. Before her diagnosis she was the most amazing Grandma to her 3 beautiful grandchildren. They have such a hard time understanding why their Grandma can’t play with them or look after them the way she did before. Now because of Covid-19 we can’t even see her in person which seems a horribly cruel twist of fate. We are watching her deteriorate with no hope for any cure. I think hope is really essence of it all.
We as humans need hope. From the moment my Mom received her diagnosis in the ALS Clinic at GF Strong any hope we had was lost. Our experience at the ALS Clinic was so horribly depressing that we as a family decided after several appointments that we no longer wanted to put Mom or ourselves through the long, tedious follow ups. It’s not to say that the people there aren’t kind, they are. It’s just simply what do they have to offer? Certainly not hope. Just a checklist of signs that you are deteriorating and come back again in 3 months so we can see how much worse you are. Why don’t we offer clinical trials in BC?? Why is the ALS Clinic in the basement of a dingy old building with no windows? For someone with this diagnosis who has very little hope left, shouldn’t we be doing something to help even give them a glimmer??
This disease has directly and indirectly affected hundreds of people within my own inner circle and I’m sure it’s the same for everyone connected to ALS. Please help us.
Dr. Mark Seger, North Vancouver
It is 2020, I am 57 and live with the support of my wife and two adult sons in North Vancouver. I grew up with a healthy balance of good food, education, sport, outdoor adventure and travel. This lifestyle seemed right to carry on as an adult, with a reasonable expectation of longevity.
After my high school exposure to biology and the other sciences captured my interest, I became very determined to pursue medical training and was ultimately licensed as a family physician in 1990. Seeing a lot of value in the doctor-patient relationship, I adopted a (now old-school) broad scope of practice that covered pregnancy, child birth, death, and everything in between. My goal with every patient was to provide my best care with available resources and to advocate in their favour when appropriate. With no healthcare needs of my own and an excellent family health history behind me, I expected to continue practicing this pattern of care well into my 60s.
That all changed before my 50th birthday. After occasional word slurs followed by muscle wasting in my right hand and muscle twitching all over my body, I visited my own family physician. The next 12 months put me through more tests and doctor visits than my entire life previously. While ALS was the most probable diagnosis, elimination of other possibilities delayed a firm diagnosis for 18 months or so. This was bad enough, but learning that not much had progressed in ALS treatment since my medical school training was beyond disappointing.
I recall the inner feeling of isolation living with this secret as I continued to work. Because timing is everything, even my wife was unaware for some months. To avoid complicating high school for my youngest son, I waited until well after graduation to tell them both, using a mountain bike ride to soften the blow. Paradoxical good fortune has given me a slowly progressive disease pattern and preserved my legs, so I was able to extend my professional life by stepwise scaling back the scope of practice as my capabilities changed. I finally had to stop working about 4 years from symptom onset.
While I have declined available treatment based on unimpressive cost-benefit ratio, and my slow progression eliminates me from clinical trial eligibility, the past four years have allowed opportunity for participation in disease research. I have undergone serial MRI brain scans, completed multiple complex cognitive quizzes, and donated blood for genomic study. The ALS Therapy Development Institute in Boston has a data stockpiling project they call the Precision Medicine Program. They now have over three years of voice recording and movement tracking data that I have been able to submit remotely. Their collaboration with Google has allowed me to participate in the development of a speech clarification app called Euphonia. This transcribes poor vocal clarity to perfect print and permits electronic enunciation. ALS has tested my natural optimism, but exposure to the enthusiastic and brilliant people involved with these projects has been inspiring.
I am now about 8 years in. My voice is weak, my speech is barely intelligible, swallowing requires focused attention to avoid choking, my neck struggles to support my head, my hands are almost useless and I cannot lift them above my head. This past February I received a surgically placed feeding tube to avoid further weight loss. Nocturnal breathing support is coming up next. Although my world is becoming progressively smaller and I need more help from family, I face each day choosing to focus on what I still can do rather than what I cannot.
The ALS Therapy Development Institute has a motto worth quoting:
ALS IS NOT AN INCURABLE DISEASE, IT IS AN UNDERFUNDED ONE
To me this conveys an attitude of commitment, excellence, and hope. That is exactly what ALS needs.
Greg G., North Vancouver
I am married and we have two kids under the age of 10. We live in North Vancouver, where we both grew up, and are active members of our community. I have coached my son’s baseball teams and also supported my son’s soccer teams as an assistant coach. I have also been a practicing lawyer for almost 20 years, the last 10 at TELUS. My wife is a teacher in North Vancouver. As a family, we are members of the local ski club.
I was diagnosed with ALS in May 2019. I was 48 years old. The neurologist who diagnosed me told me that there are no meaningful treatments and that I should get my affairs in order and cross items off my bucket list within the next six months. He also told me that the next step was to attend the ALS Clinic at GF Strong, however, the next available appointment was seven weeks away.
Because BC does not offer clinical trials for experimental drugs, which advance science and provide hope, I have traveled to Montreal 13 times in the last 15 months to participate in trials. Two thirds of the people in the trials get the drug, one third get a placebo. For a few of the visits to Montreal, all they needed from me was a bIood /urine sample; I flew across the country for a 10-minute appointment.
I am 16 months into my diagnosis, my arms are weak, my hands are feeble and my wife must help me get dressed and cut my food. I can barely walk, my capacity to breathe is decreasing and my ability to speak loudly and clearly comes and goes.
Brian and Laverne G’froerer – North Vancouver (written by Paula Michetti, Calgary)
My parents, Brian and Laverne G’froerer, were (are) remarkable individuals that spent their lives as part of the Vancouver music scene. Dad spent his career playing French horn with both the Vancouver Symphony Orchestra and the CBC Radio Orchestra. Mom was a professional singer, first with the Vancouver Opera and then as long-term member of the Vancouver Chamber Choir, where she was nominated for a Juno as the executive producer of the album “A Quiet Place”. This album was intended to provide moments of calm to those struggling both mentally and physically, and was often used in the healing touch sessions she provided to so many around the Lower Mainland. Their lives were brilliant, unique and inspiring to my sister and I growing up in North Vancouver. And unfortunately, in an incredibly rare situation, they will both die from ALS.
My mom passed away in March of 2018 after a battle with both ALS and Frontotemporal Dementia (FTD), two diseases which unfortunately can go hand-in-hand. FTD is a heartbreaking form of dementia, as it kills the part of the brain that is responsible for the essence of who you are. Mom’s recognition of social norms deteriorated, her sense of humour disappeared, and she lost her language skills. While her memory was intact, the loving, empathetic woman that we all loved so much slowly deteriorated, leaving a shell of a person that did not laugh, did not ask questions about her beloved grandchildren, and could not interact socially. Heartbreakingly, it also stole her ability to sing. After doing lots of online research, the FTD diagnosis in January of 2017 was expected – what we didn’t expect was the bulbar-onset ALS diagnosis just 8 months later. She was choking on food, unable to speak, and her doctor had told us this was just part of her dementia. But, we dug deeper and insisted on more testing, which we were right to do. ALS was indeed now part of our lives.
Along with that diagnosis unfortunately came a lack of understanding from many in the medical field, not to mention society as a whole. Two rare diseases intertwined… Google often was our best resource. My dad was mom’s caregiver up until late December 2017, when she unfortunately ended up in emergency, and the care team determined that she needed full-time support from a medical team. Mom lived her last three months at the Lynn Valley Care Centre, still walking up until a few days before her death, when her lungs finally gave out and she passed away on March 26, 2018.
Watching mom’s death from ALS was incredibly painful, but we believed dad would have many years ahead of him. Unfortunately, just a year and a half after mom’s death, we received the unbelievable news that we dreaded but unfortunately expected after watching dad’s symptoms progress. He too, had ALS. When two spouses have ALS, and there is obviously no genetic connection, it is not referred to as familial ALS – it is Conjugal ALS. And when I asked about it, while doctors and researchers acknowledge it is likely not random and there must be some environmental connection – they couldn’t offer any concrete insight. Just an awful twist of fate. I find that people seem to not believe me when I say that both my parents have (had) ALS, like I am making it up. I truly wish I was.
Dad is still living in North Vancouver, but is succumbing to the awful progression of this disease. Unlike mom, his ALS is limb-onset, so we can still chat over sushi dinners, which is wonderful. But his limb-onset ALS means that he is losing mobility in his hands, and walking is becoming difficult and exhausting for more than a short period of time even using his walker. Dad can no longer play the flugelhorn in his brass band, which had become a great joy of his in the years following his retirement from the VSO. His lung capacity is substantially reduced, and as a result had a feeding tube put in pre-emptively once his lung function was at 50 per cent, for down the road once his swallowing function is more impaired. Unfortunately, we all know ALS far too well, and know what is to come.
Watching both of your parents go through this disease is something I would not wish on my worst enemy. We have to wonder if there is something environmental on the North Shore that could be a cause somehow? There seem to be so many cases in our beloved neighbourhood. My heart breaks even more for those that are my age and younger, often raising young families, that are struck with this disease.
Shirley Clarke, North Vancouver (written by Laura Clarke, North Vancouver)
I am writing this on the 10th anniversary of my mother, Shirley Clarke’s, death from ALS. Tonight her husband, children and grandchildren celebrated her life at her favourite Vancouver patio at Bridge’s restaurant on Granville Island. She missed watching her grandkids run around and play and eat ice cream cones dripping in the heat. ALS robbed her of this and took our mother, wife and grandmother at just 56 years old.
My mom was diagnosed less than 2 years prior to succumbing to this awful disease. There was some tripping and falling that we initially chalked up to my mom’s clumsiness…but behind the scenes, she and my dad were meeting with doctors, more concerned than they let on to their grown children. We didn’t experience those depressing doctors appts with them, instead they received a diagnosis and digested it for months before finally telling us kids, by then I was pregnant with their first grandchild. At that point, my mom, 7 months into her diagnosis, accepted that this disease was terminal – when she told us, it was about enjoying the time we had left together, managing her needs, and getting her affairs in order which was a monumental task being that we were a family real estate business for which she was the face and name.
My mom was a beloved member of our community. She was the ultimate hands on mom, so involved with my brother, sister and my lives. She waited until we were in our teens and twenties before starting her career as a realtor, and she quickly became very successful in our area in North Vancouver. Everybody loved her. She was kind, caring and generous. Everyone was shocked that Shirley was taken so quickly, in the prime of her life and career.
Soon after her diagnosis, my parents gave up on the GF Strong appointments as they were not getting them anywhere. Their family doctor, along with a close friend’s daughter who was a palliative care doctor, became a weekly, then daily manager of her medical needs and every changing medications. We were fortunate to keep her at home, we built a wheelchair accessible bathroom in the garage, moved her bedroom down to the dining room, and my car became the wheelchair minivan with a ramp – ironically handy with the new baby I was tending to at the same time as my ailing mother.
My mom’s quality of life deteriorated so quickly and daily tasks became so onerous that I truly can’t imagine her and our family enduring them for much longer than we did. As much as I would love for her to be with us now, I am so glad that she is no longer suffering the way she did with ALS. It is truly an excruciatingly painful journey for every ALS patient and their family, one for which I still bear the wounds. It pains me when I get a phone call from someone I know whose loved one has received this diagnosis. I wish I had more resources to give them, more stories of hope…but there are none. We have so far to go with this disease and need all the help we can get.
Fiona Marshall-White, North Vancouver (written by Stephanie Marshall-White, North Vancouver)
I am 26 years old and not a day goes by where I don’t think of my mum, and what ALS robbed my family of. February, 5 years ago, my mum came to visit me at university in Ottawa and slipped on some ice. While seemingly normal enough for a person to lose balance on the icy wintry sidewalk, began the process of her eventual diagnosis a few months later of ALS. Just over a year later, she lost her battle to this devastating disease.
A successful entrepreneur, recognized in her field of tourism and meeting planning in North America and a well-known member of the community she never sat still a day in her life. Always on to the next challenge, striving to be better to those she worked with and to her family.
After her diagnosis, the most difficult thing for her to understand was the non-existent support given to ALS patients through the health care system. Having to show up once every six months to the bowels of GF Strong – a rehabilitation hospital – to be told yes all is normal, this is ALS. Her family became her advocate as most medical professionals outside of GF Strong had no idea how to help an ALS patient. Once, she was admitted to Lions Gate Hospital with trouble breathing, I (her daughter) had to explain the basics of ALS, the breathing devices and more to the nurses and doctors. That experience not only shocked me but profoundly disappointed me that my mum had such little support from the medical professionals in our community.
In talking about her greatest desire after her diagnosis, my mum said the one thing she wished she could have, hope. Hope that a treatment, or even that the services available in British Columbia could be a reality for her. My mother’s condition deteriorated so quickly, we never had time to look at other treatments in Canada or out of the country.
She also would have been the first to admit that we were lucky, we had the resources to be able to afford help, to do the essential remodelling of our home, for my dad to leave his job to spend time at home. We also had the incredible support of the ALS Society of BC. But there are so many in B.C. who simply don’t have those options, and it is for those that I advocate for now by continuing to tell my mum’s story. All that ALS patients ask for is hope, all that ALS patients’ families ask for is hope – we need our legislators to help deliver that.
Suzanne Rayment, Vancouver (film by Andrea Copp, North Vancouver; edited by Nigel Edwards)
Mae Dang, Vancouver (written by Calvin Dang, Vancouver)
My mother, Mae Dang, was diagnosed with ALS at the age of 34 in 1973. She died of the disease in January of 1993.
I was 3 years old when she was diagnosed.
That is to say that I only remember her as “Mom.” Not Mom, victim of ALS. Certainly not Mom, the energetic, beautiful, intelligent, woman who was a gifted athlete and elementary teacher, born and raised in Vancouver.
As Mom, she never spoke with her physical voice as it was one of her first physical abilities to vanish. She, however, articulated volumes with the cadence and expressiveness of the blinks and looks of her eyes. In those eyes, she expressed elation, anger, happiness, sadness, and pride. At first, she communicated with a bliss board (google it!), but as her ability to move her hand and fingers slipped away, communication consisted of a streamlined way of spelling words using the alphabet and her eyes to indicate letters. This method became very efficient and an abbreviated language developed between her and I. For example, as soon as she spelled out “ilo. . .,” my reply to her was always “I love you, too. Mom.”
Almost all of the care for my mother came from my father, Joe. While still a full time teacher in North Vancouver, Dad would bring Mom home from Pearson Residential Facility in Vancouver on weekends. He would cook, clean, feed, take her to the bathroom, turn her as she lay in bed, brush her teeth, wheelchair her everywhere. He also took her, my brother, and myself on vacations – Florida, Disneyland, camping trips. He made every effort to have her witness the milestones of our growing up – baseball and basketball games, birthday parties, graduation ceremonies. With an herculean effort on Dad’s part, it was life lived as best as could be.
It gives me solace that Mom was able to watch me play sports, graduate, go to university, and meet the amazing people who were my friends back then. The regret that I have is that she was not able to meet my wife nor my daughter and son – her grandkids – and to know that I’m OK.
As long as I am alive and have a coherent thought in my head, Mom will be alive as well – every single day that I think of her.
In May of 2019, I received an email from one of those amazing guys that I knew back in high school, Greg, a dear friend with whom I had not had contact with for thirty years. In that email, Greg asked me if I would like to have a coffee and a chat about his very recent diagnosis of ALS.
That news crushes me. Everyone who is touched by this disease knows the meaning of impotence and helplessness. It hurts me to know that there is not a lot I can do for my friend other than let him know that he is not alone, and that he has friends and family, including his children, behind him, helping and holding him every step of the journey.
Paul Smith, Dartmouth
Story to follow
Bill Duff, Halifax
Story to follow
Erin Hines, Dartmouth (written by Shelley Hines)
When Erin’s dad died unexpectedly in 2007, we thought that that would be the most difficult thing our family had ever faced, but I was wrong.
Erin had been going to community college to study Medical Office Administration, when she noticed that there was something weird going on with her thumb, she could not seem to get it in a “thumbs up” position. Then her other hand started to be affected, and her gait started to change. After all the tests and trips to the hospital, she was diagnosed with ALS on January 16th, 2018, one month shy of her 24th birthday.
Her twin sister moved home from Alberta, just prior to this, and her brother moved back to Nova Scotia in August of 2018.
As her mom, I was completely devastated by her diagnosis, and have never felt so sad, angry, depressed, helpless, lost, in my life. Why did this happen to her? How were we going to get through this? There were many drives to the beach so I could cry and scream at the ocean. Trying to be strong, not only for Erin but for Emily and Alex as well, feels like more than I can bear some days.
I know there will be worse days to come, and I try not to think of those. That old cliché “one day at a time”, is now my mantra. Her bad days are my bad days, and her good days are my good days.
Quote from Erin a few weeks after her diagnosis…
“I’ve cried more tears from laughter than I ever have from sadness, and I’ve felt more love in 23 years than some people feel in 100. Those are the things I’ll focus on when things get tough.”
So for now, we fight!!
Taya Jones, Toronto
Story to follow
Diana Rogers, Toronto
Story to follow
Carol Skinner, Ottawa
I was diagnosed with ALS on September 19, 2013, at the age of 41.
The day of diagnosis I went in for an EMG and walked out with 2 to 5 years left to live. It is a day that those of us living with ALS will never forget. It is an unwanted anniversary, a marker of shock and fear, a countdown of the years, months, days, minutes that we have left.
I woke up that day without a clue as to how my life would change. I went through the dreaded needle in the muscle test and the neurologist kept saying, “I’m afraid to say this is quite serious”. My husband Travis and I were trying to focus on what the doc was telling us…no tumours…no blockages…sound back…sound brain…nerves going to muscles…motor nerves not affecting sensation…degenerative condition…motor neuron disease…lou gehrigs disease…no known reason….ALS…progressive…no treatment…no cure… shortened life…2-3 years…
Of course this is a devastating tragedy for my family and myself. We had to sell our home to move into an accessible rental. I am losing my body, in a way that is terrifying as day by day there are activities of daily living that I can no longer accomplish on my own. I have lost my career with the Canadian Mental Health Association as an art therapist facilitating groups for individuals with mental health and substance use disorders. I can no longer drive. I have lost my independence. I have a PSW who helps me shower. I cannot cut my own food. We have lost our future dreams. ALS is an illness that is at the forefront of our thoughts 100% of the time.
I now focus my time on advocating to end ALS. Due to my illness I was forced to quit my job immediately upon diagnosis. I was proud of the work I did in giving back to others, and being an advocate for ALS has replaced for me what I have lost in my career. It brings back purpose and meaning to my life. Please visit my blog at www.livelovelaughwithcarol.com
Derek Swinnard, Ottawa
Derek Swinnard was an athlete, basketball coach, school teacher, husband and father of
two daughters. In 1993 & 1994, when he was in his early 40’s, he noticed he was not running as well, and dropping balls so much so that he stopped playing with his local baseball team because he felt he was no longer contributing. He joined an “over 35” basketball team, yet his older teammates were outrunning him. He had difficulty shooting and he seemed to be falling a lot. He developed drop foot in his right leg, which the neurologist had told him was an “irreversible L4 problem”.
Derek tried acupuncture and also saw a chiropractor who specialized in sports injuries. They seemed to help somewhat yet over time his symptoms worsened. On his “old-timer” ice hockey team he started having trouble standing and fell often. In the classroom he was dropping chalk in class, and had trouble throwing and catching things. A physiotherapist noticed his right calf was visibly atrophying.
In June 1995, on a visit with friends, he tried special insoles and tried sleeping on a magnetic mattress pad, both of which he purchased and both helped, but overall, Derek’s symptoms continued to worsen. He was experiencing bad muscle cramps, severe muscle twitching, and began to have trouble stepping in and out of the bathtub.
When he went back to visit his friends in September, they literally put him in a car and took him to a local naturopath, who did live blood cell analysis, and showed him his blood versus healthy blood. His naturopath identified free radical damage, white blood cell problems, as well as yeast and fungal infections. He left the office with dietary instructions (including no fried foods, no red meat, no carbonated drinks), liver and kidney cleanse supplements, and a number of other supplements. Although Derek felt he might be getting scammed after the $400 bill, he trusted his friends’ judgment and decided to follow the naturopath’s instructions. After several months of strictly following the regimen, in November 1995, he returned for another live blood cell analysis and could see for himself the obvious improvement in his blood.
Also in November 1995, Derek began seeing a homeopath, an hour and a half’s drive north, who found lead toxicity, and a number of other abnormalities.
Although he was feeling better with his holistic treatments, Derek knew there was something still wrong. He noticed during weight training his strength had diminished and that his left side was weaker than his right. He saw a doctor for blood work and his doctor noticed enough abnormalities to refer him to a neurologist. The neurologist ordered tests, including a nerve conduction test and muscle biopsy, which were inconclusive so Derek was finally referred to a neurologist in Toronto in June 1996, and continued visits about every six months. After the fourth visit, he was definitively diagnosed with ALS in December 1997.
During all of his visits with traditional doctors in the process of getting diagnosed, Derek’s doctors did not suggest any treatments, only more tests. So during the period from June 1995 until he was diagnosed in December 1997 Derek continued with various holistic regimens. He continued the diet and supplements that the out-of-town naturopath recommended, then found a local naturopath to work with. He was also treated by a Chinese herbalist/acupuncturist, and continued with the chiropractor and the homeopath. He felt positive results from these treatments, their approaches made logical sense to him, and he was taking positive steps towards his health versus doing nothing while waiting for test results and more neurologist referrals.
As a result, after two and a half years of holistic treatments while getting diagnosed, by the time the final diagnosis came in December 1997, Derek’s symptoms were about 60 percent better than they were at his lowest point.
Still, when the diagnosis finally came, afterwards Derek was in a daze. He told his wife, who was upset not just with the diagnosis, but also that Derek did not want to share the diagnosis with anyone, including their two teenage daughters. Derek felt that what he was doing was working, that he could beat this, and wanted to share the diagnosis only when he could give people good news.
After his diagnosis, Derek stepped up his holistic therapies. He saw his homeopath regularly and continued with the naturopath, who started researching ALS and based her treatments on what she found. He was referred to a different chiropractor who found and cleared three blockages in his spine. His lower back felt better and he found out spinal blockages could also affect nerves going to internal organs and glands, like the adrenals. His Chinese herbalist/acupuncturist referred him to a well-regarded acupuncturist from China, whose treatments helped his spasticity and walking. He had some sessions with a cranial sacral therapist. Derek also researched on his own. He found and tried a number of vitamins that might help. He had no adverse results from any supplements except for calcium-based supplements. He took grape seed extract almost from the beginning and still takes it today. Derek also found Steven Shackel’s website in 1998, now http://shackel.org, to be extremely valuable and some of the protocols on that site were helpful. After reading about liver function he added NAC, milk thistle and burdock root to his regimen and noticed the yellow tinge in his eyes disappeared. He shared with Steven via email his success and others wrote to Derek wanting to know more details. Just knowing there were others healing ALS holistically and trying to heal had a positive effect.
While working on his holistic treatments after his diagnosis, Derek continued to work as a school teacher. He thoroughly enjoyed his work and it helped him keep his mind off his disease. Still, the stress of “acting normal” while dealing with a terminal diagnosis, worried about falling, wondering each morning if he would be able to walk to the bathroom, Derek began to have mood swings and had a very short temper. Finally, during an outburst about eighteen months after diagnosis, his wife insisted he share what was happening with their daughters, and shortly after that they shared it with other close family members and friends.
Derek was raised United and his wife is a devout Catholic. His routing included saying the Lord’s prayer every night and thanking God for what he does have, rather than focusing on what he does not. Still, around the time he shared his diagnosis with his daughters, even though he was continuing to improve physically, Derek was frustrated with his slowness of his improvement. In late August 1999, Derek remembers going out onto his back deck, looking up and saying “God, could we make this better or just get it over with?” He said it not as an ultimatum, but rather a plea for help.
About two weeks later, Derek was coaching a basketball clinic and that night he had a dream. In that dream, a person he thought he recognized said “Hi Derek” and a peaceful feeling came over him. Later in the dream the room was very crowded and Derek thought he might fall and he felt someone intentionally bump his back. He could not turn around but a hand appeared and showed him a note, and he felt that same peaceful feeling. On the note was written “Psalm 30” and then he woke up. When he looked up Psalm 30 it was “The Blessedness of the Answered Prayer”. He couldn’t believe what was written and when he showed his wife, she cried.
After the dream, things seemed to shift. Derek’s fear of death subsided considerably. The emotional roller coaster he had been experiencing during and since diagnosis calmed. When he felt down he knew that someone was watching over him.
About three years after diagnosis, Derek finally shared his ALS diagnosis with his colleagues at work, and soon the school and community knew. They had been aware of the gait issues and likely thought it was MS or Parkinson’s. This led to Derek getting involved in the local ALS community. He participated in fundraisers, including annual ALS walks. He remains involved to this day and also participates in the national Canadian ALS Society as an ALS patient representative.
Over the years Derek has met and shared his story with many people diagnosed with ALS. Some are interested in what he has done, others are not. Some try some treatments and then seem to give up. Many have not had the level of success that he has and to them he would like to say, “Be patient, be persistent, keep trying things, keep researching, see holistic practitioners, stay positive, and don’t give up”.
Today Derek feels he is about 95 percent better. After over 20 years experience with ALS, he knows that positive mental attitude is key to healing. Without being positive, without gratitude each day, without letting go of the negative things in life that happen almost daily and turning them to positives–all the physical therapies in the world will not be successful.
Someone once told Derek that healing is like peeling an onion. Until you get to each layer you don’t know what needs to be healed, and until you heal that layer, you won’t be able to see the next one. This is why the same treatment that did not work at an early stage of healing, might work at a later stage of healing. The onion example can be equally applied to physical and emotional healing.
Derek credits also his healing not only to his own positive attitude, research, and acting on that research, but also to the various medical professionals that helped him in his healing journey. They worked with him on nutrition, supplements, detoxification and applied their expertise to helping him heal. His homeopath and naturopath were especially key, but the chiropractors and acupuncturists were important as well. Even the magnets had a positive impact. Having the support of his wife, family and friends was also key. His friends dragged him to that first naturopath and set him on his healing journey. His wife supported him while he tried any and every treatment he could find. Steven Shackel provided him with information on his website. Each holistic professional and each chance article he read or encounter with a friend all contributed to his healing.
Derek suggests considering prayer and reading Psalm 30 for anyone diagnosed with ALS. He believes we will eventually go to a better place, but in the meantime don’t give up on getting better now and do everything in your power to heal.
Deane Gorsline, Ottawa
Since my earliest memories, soldiers have fascinated me and the arduous journey to martial prowess enraptured me. My military career began in 2007, a week after graduating high school, when I left Quesnel, BC for basic training in St. Jean, Quebec. Following basic training, I went to the Royal Military College of Canada where I studied civil engineering and completed my training as a Combat Engineer Officer. Since that time, I have qualified as a Combat Diver and served in Afghanistan and many other things. I relished every opportunity to challenge myself and drive my body further than one thought possible. The pursuit of excellence in the profession of arms was my calling.
Alongside being a soldier, I have strived to be a faithful, loving, partner and husband. I met my beautiful wife, Danielle, in our last year of high school in 2007. We followed our own pursuits after graduation but our paths crossed again in 2012 and we began dating. Since then, Danielle has dealt with an overseas deployment, numerous multi-month-long exercises, and two postings. She has been my emotional rock and greatest supporter. Concurrently, she has completed her Ph.D. in microbiology and biotechnology, being recognized with multiple awards including the Governor Generals Gold Medal as the valedictorian of graduate students for her graduating class at the University of Alberta. We have a cat and a dog and we share a love of the outdoors. Backcountry trekking, mountain biking, ice climbing, and hunting are just a few of the activities we love to share. It is my conviction that we, as a couple, are at our best on a long arduous backcountry trek together. We have shared the pleasure of this experience on multiple trails. At the time of diagnosis, we had dreams of having a family and Danielle’s career was just blossoming. Now with my rapidly degenerating body, the outdoors is no longer something we can share. Danielle’s career has been paused to help care for me and maintain the household as every chore and household task that requires hands fall to her. The question of a family is beyond complex. Our collective dreams have been shattered by ALS.
On Christmas Eve of 2018, as Danielle and I sat in the cold, stark basement of the Ottawa Civic Hospital, we listened stoically as a neurologist diagnosed me with ALS. We had mentally prepared for the worst but hoped the weird muscle fasciculations and unexplained weakness in my hand could be attributed to nerve damage or a herniated disc from a lifetime of physicality and a decade of soldiering. Our hope that it was anything but ALS was wiped aside with a quiet finality from the neurologist explaining I had 2 to 5 years to live. A few silent tears rolled out of Danielle’s eyes as she shuffled some papers she was holding. I fidgeted nervously, attempting to control my breathing, heart rate, and pathetically welling eyes. As the diagnosis of ALS began to loom over me, Danielle began researching the latest treatment options and publications on ALS. She began to ask the neurologist about the latest peer-reviewed scientific papers presenting promising results from phase II and III clinical trials she had found. Her initiative made me feel hope; if we put in enough work and found enough drugs and therapies we could stack them together for a meaningful change to my life expectancy. I was proud of her work and how she had prepared us to ask intelligent questions. That flimsy life raft of hope was shattered as the diagnosing neurologist nonchalantly admitted to having zero knowledge of any of the scientific data surrounding the multitude of validated papers Danielle had brought in. From this, it was clear we would have to keep track of the latest therapeutic advances ourselves.
We left the hospital feeling empty and numb. On the drive home, Danielle asked if it was normal my neurologist did not know about numerous major clinical trials running out of other world-leading motor neuron disease clinics. I did not have an answer. I felt as though I had been sent home to enjoy what little remained of my independence until I eventually required hospitalization, slowly became a prisoner in my own body, and asphyxiated. Death is not foreign to me; as a soldier, I have contemplated my mortality frequently. However, to passively wait for death without fighting, regardless of the odds was an excruciatingly foreign concept. This was my first wake-up call on how fractured, uncoordinated and sometimes apathetic the health care system can be in the fight against ALS.
For me, the worst was explaining the news to my parents. I had only notified my parents of the potential of a serious medical condition two weeks prior. Seeing the pain on my mother’s face and the helplessness on my father’s face as their only child was handed a death sentence was painful. It made me sick to my stomach. For the rest of the week, we all tried to enjoy the holiday season and make it as normal as possible considering the circumstances. My father would comment on how my ice skating still looked good in a vain effort to console himself, despite the fact I was rapidly losing the ability to handwrite or tie my shoes. My father is one of the most disciplined and professional mentors I have ever had; however, this was foreign territory for him. I could see uncertainty in him for the first time in my life. The distress was visible in my mother as well; however, her spirit is relentless and she immediately began to research where the very best ALS clinic is in North America. Within a week, she had booked an appointment for me at the Massachusetts General Hospital with the head neurologist at the end of January. This was our family’s new hope.
The care and information Danielle and I received in Boston were superb. The neurologist was acutely aware of all meaningful and recent scientific developments within the motor neuron disease field. this information enables us to source new medication to fight for percentage points of increased life expectancy. this meeting bolstered our family’s hope and enabled us to plan our offense of action against the disease. Danielle and I left Boston with a renewed sense of purpose. One opportunity that was identified was a new mesenchymal stem cell procedure in Seoul, Korea. The treatment is the leading edge in clinical trials for ALS therapy development and foreigners can pay to participate in their phase III clinical trial. My close friend helped my family by initiating a Go Fund Me that raised $75,000 CAD in one month. In the following year, my family and I traveled to Korea on five occasions to facilitate three stem cell injections. Through analysis of anti-inflammatory biomarkers in my CSF and quantitative strength analysis, I obtained a cumulative total of 5 months reduction in disease progression. Albeit this came at a major cost to our family and I sustained arachnoiditis from the nine lumbar punctures I had in the last year. My family does not regret the cost of this endeavor because this was a way to genuinely fight this disease. As such, our mental health and resolve were reaffirmed through offensive action.
Throughout my journey, I’ve met many people within the ALS community, including many wonderful volunteers and other people living with ALS. Through this community, I have begun to understand that science is not our only barrier to fighting this disease. Just because therapy has been scientifically validated to treat ALS doesn’t mean we will be able to access it before the disease takes our lives.