Provincial Coverage of Drug Treatments Announced in Alberta: Amylyx Pharmaceuticals Canada’s ALBRIOZA™ and Mitsubishi Tanabe Pharma Canada’s RADICAVA ORS®.
The ALS Society of Alberta is pleased to announce that the provincial government has taken a significant step toward improving the lives of individuals living with amyotrophic lateral sclerosis (ALS) by introducing public coverage for both ALBRIOZA™ and RADICAVA ORS®.
ALBRIOZA™ is Amylyx Pharmaceuticals Canada’s new drug treatment for ALS while RADICAVA ORS® is an orally administered formulation of Mitsubishi Tanabe Pharma Canada’s existing RADICAVA IV® infusion drug treatment.
ALS, also known as Lou Gehrig's disease, is a devastating neurodegenerative disease that affects the nerve cells in the brain and spinal cord. There is no known cure for ALS, yet. Currently, the goal of available treatments is to manage symptoms and slow down the progression of the disease, giving individuals living with ALS more time to spend with their loved ones.
The addition of these treatments to the list of provincially covered medications is a ray of hope for Alberta’s ALS community. Both ALBRIOZA™ and RADICAVA ORS® have shown promising results in clinical trials, offering potential benefits in terms of improved quality of life for those living with ALS.
The Society applauds the provincial government's commitment to prioritizing the health and well-being of Albertans living with ALS. Time is not a luxury afforded to those affected by ALS, and the inclusion of these treatments in provincial coverage ensures ease of access for those who need it most.
The ALS Society of Alberta would like to express gratitude to the provincial government for its ongoing support and collaboration in addressing the time-sensitive challenges faced by individuals living with and families affected by ALS. Together, we can continue to make each day the best possible day for those living with this disease.
For more information on ALS, the Society, available resources, and support, please reach out to the ALS Society of Alberta. We remain committed to advocating for change, facilitating the provision of care, promoting awareness, and helping find a cure for ALS.
Making It Possible 2023 - THANK YOU
As ALS Awareness Month 2023 comes to a close, we want to thank all those who have been, and who continue to be, Making it Possible.
Thank you to the over 30 passionate, fierce and awe-inspiring members of our ALS community for graciously sharing their stories.
Thank you to all our event participants, Ambassadors, volunteers, committee members, donors and sponsors – you helped make our Walks and Runs during ALS Awareness month incredibly successful. Your continued support means that Albertans living with ALS can continue to have the ALS Society of Alberta in their corner while also funding research to help find a cure.
And thank you to everyone who engaged with and spread these stories around - the immense outcry of love and support from our community each year is astounding.
Making it Possible is a series that was created as a way for our families to share their stories. We are moved year after year by the positivity and hope shown by our community. They truly show the possibilities of life, even when living with ALS – of the joy, the sadness, the hope, and the love of family and friends. Our community teaches us every day about how to truly live, and strengthens our commitment to fulfil our mission – to make each day the best possible day for those living with and affected by ALS.
Thank You, Karen Caughey
Today, all of us here at the ALS Society of Alberta would like to give a thankful and heartfelt goodbye to our Executive Director, Karen Caughey. After over 16 years of outstanding leadership and service to the ALS community, we congratulate her well-deserved retirement.
Karen has been the cornerstone of our mission to make each day the best possible day for Albertans living with and affected by ALS for many years, and her legacy is irreplicable. She always brings compassion, empathy and a warm spirit to everything and everyone she touches. Going above and beyond is the bare minimum for Karen: from personally meeting with countless clients and donors, organizing with sponsors and event hosts, to helping to make sandwiches at our Edmonton Walk.
Karen has been vigilant and dedicated to ensuring a seamless transition for our incoming Executive Director, Leslie Ring-Adams. Everything Karen has done during her tenure has been in service of making The ALS Society of Alberta as great as it possibly can be in its’ support of our families. Karen, words can barely describe the impact you have made. Thank you for everything you do, and everything you are!
Making It Possible - Day 30: Rita Stegerman
This is bigger than me
Today is my best day and I plan to enjoy it.
I sit here at our kitchen table with my iPad, a small camera is attached, and a small sticker is on my glasses. This allows me to use the apps and to write this story. For this, I am truly grateful and not trapped inside my mind. Both of my hands and arms have stopped working. My tongue is weak making it difficult to swallow and impossible to say simple words. My legs are weak and today I was measured for a wheelchair. Tonight, I will be fitted with a BiPAP machine to help me breathe at night, and a feeding port is being installed in my stomach, as I am a shadow of my former self.
My journey started 17 months ago with my right hand and forearm feeling very cold. Then my fingers were stiff and so I bought the ergonomic correct pads, as my job included a lot of computer work. This didn’t help so I decided to go to my doctor. He suspected carpal tunnel and referred me to a neurologist. A month went by and then I got in to be tested. It was a series of nerve tests with no diagnosis other than I was to wait another couple of months and then get tested again. It was not carpal tunnel and was affecting my left leg and tongue as well. I waited another couple of months with my right hand getting worse. After another appointment with my GP, I learned they thought I had ALS. ALS? I’ve never heard of it. I remember going home and telling my hubby. I googled it and began to read out loud what it was. We both were in denial and would wait for the specialist at the Kaye Clinic. A few weeks later I went to learn the raw truth. I have a very aggressive ALS. It is terminal. Maybe 2-3 years. I remember sitting in my truck in the parking lot feeling numb. I really don’t remember driving home.
From there we met some of the most incredible people that truly helped us get ahead and understand the changes that came. The support came emotionally, and physically, and included help finding assistance from financial aid to equipment.
I went through all the stages of grief. I begged God to heal me. Then I had it out with him. Broken, I wept and surrendered. That is when I heard, this is bigger than you. What does that even mean?
My eyes were opened, and I started working with three research teams to find out more about this disease in the hope of an early diagnosis and possibly a cure. Then I began working with the ALS Society to see how to help.
Now I need to back up a bit. Three weeks after my diagnosis we lost our God Child and nephew Cole, in a terrible accident. Throughout this all, I kept hearing, this is bigger than you.
This life isn’t fair, and it downright sucks sometimes. I have learnt to find my gratefulness every day, thank God for what I can do and make today the best day.
Our son, Cody and my hubby, George came up with the idea to cycle from Canmore to Lake Louise this summer for a challenge. This became bigger than us. We decided to ask everyone to join us and turned it into a fundraiser for ALS. Starting this August 19th will be the “1st Annual Cycle for ALS”.
So, do you own a bike? Do you like the mountains? Does this sound overwhelming or challenging? Everyone can get involved, whether you ride only a few km or all 88km. We want you to get involved, to ride or to sponsor a rider. To do so, visit this link.
https://www.alsab.ca/cycleforals
The proceeds will go towards research for a cure and funding for the ALS Society for equipment that is available to the patients who need it. The biggest thing I believe would make a difference is simply awareness. Please consider sharing this and getting involved.
A huge thank you to my family, friends, caregivers, and the ALS Society. This is bigger than me. Today is my best day, and I plan to enjoy it.
Making It Possible - Day 29: Gordon Ellis
"I'm not going to let this run my life. I'm in charge." These words became my mantra 6 years ago when I was diagnosed with PLS. Could I have cowered under my covers? Could I have given up? Could I have quietly waited for my disease to take control? Yes, but… "I'm not going to let this run my life. I'm in charge." So, with those words on my lips, I set out to take control and continue as though nothing changed. I could not do it without my family though. My wife and two kids give me that extra push every day.
I needed to expedite my travel wish list, so I set about planning. I knew France and Africa were at the top. Because I knew mobility would be an issue, being in a wheelchair, it took a lot of planning. Renting bungalows, contacting the airlines about my needs, and recognizing that there may be certain areas I just couldn't get to. So, with a little work and the extraordinaire help of my wife, Sandra, and my two kids, Sam, and Fiona, it was a success. My kids even fought over who got to push my wheelchair which was funny.
In 2019, just before the lockdown, we packed our bags and headed to France. We spent 2 weeks driving around France, seeing the sites, and drinking the wine. It was hard in a wheelchair but well worth it. The memories I was able to create for my family are immeasurable. Navigating France in a wheelchair was bumpy with all the cobblestones it was still very doable.
Then, once the lockdown lifted, we started planning our trip to Africa and this past Christmas we took off. We spent a week in Zanzibar and 10 days on a Safari in Tanzania. I was lucky in that every morning our guide would pick me up and put me in our jeep so we could head out every day. Once again, it was hard but the memories we created for me, and my family were worth it.
Our plans for our next trip to Italy are about to start in 2024.
Making It Possible - Day 28: Board of Directors
Today for our Making it Possible series, we would like to recognize the dedicated members of the ALS Society of Alberta Board of Directors.
Thank you to the ALS Society of Alberta Board of Directors, for leading the Society to provide the best possible supports for our families across Alberta and fund ground-breaking ALS research.
Our incredible leaders are: Nancy Lyzaniwski, Cathy Martin, Gord Banting, Andrea Orzech, Kimberly Howard, Pamela Keenan and Tom Gee.
This dedicated group of individuals gives countless volunteer hours to lead the Society to “Make each day the best possible day for people affected by ALS.” Their constant and unwavering support guides our team to do their very best for our families.
We are so thankful for their service – in the words of Margaret Mead…
“Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has.”
Making It Possible - Day 27: Mikael & Frida Backlund
Mikael and Frida Backlund have been making possibilities happen for our families since 2015. They have dedicated their valuable time and effort to make a difference in the lives of families affected by ALS in Alberta.
In addition to donating funds to the ALS Society for critical ALS research, they generously provide tickets to the Calgary Flames Games so that families can spend a night out together. This is more than a night out, this is precious time families can spend together. Over 90 families from across Alberta have had the opportunity to attend a game. After the game, Mikael meets each and every family.
Mikael and Frida not only support the work of the Society but more importantly, make memories for our families to keep forever.
There are no words that can express the difference Mikael and Frida have made in the ALS community and their work in making our community a better place.
On June 26th, Mikael so deservingly received the King Clancy Memorial Trophy for his leadership qualities on and off the ice and his humanitarian contribution in the community.
Thank you Mikael and Frida!
Making It Possible - Day 26: Leni Thomas
It started abruptly enough in February 2018. My wife, Leni, started feeling that the kitchen knives were not sharp enough for cutting vegetables and meat and we changed the entire knife collection. It still did not help. Soon, she needed help to move pots and pans from the stove to the counter. Also, it became noticeable that her left ring finger started twitching and the space between her right index finger and thumb started experiencing muscle loss. The fingers also started curling and it was accompanied by pain. A shoulder pain started which we assumed was part of an earlier frozen shoulder. Then we noticed stumbling over words, fasciculation, left arm cramping and toe/finger cramps. We were also assuming that these might be side effects of the macular hemorrhage treatment that she was undergoing since 2017. We met our family doctor in April 2018, who recommended going to the Emergency as he suspected a stroke. Tests at the Emergency did not reveal anything out of the ordinary and we were provided a follow-up appointment at the foothills with a neurologist. An initial checkup with the neurologist did not reveal any problems; however, she was asked to go for an EMG test, which was scheduled 5 months later.
In between, Leni and the kids got a chance to go to India in August 2018 to get an ayurvedic massage for shoulder pain. Before the massage, following a friend’s suggestion, a checkup in a Mumbai Hospital revealed a surprise and shocking diagnosis; ALS. An independent confirmation again at another hospital in Vellore, India confirmed the same diagnosis. This was quite emotional and traumatic for the full family. As I could not go to India due to work, it was her brother who got the news first, which left him devastated. The son (who was 15 years old then) managed to piece together all the information and relate it to Stephen Hawking's disease. Our daughter while hugging her mother asked her, “Do you have only 3 years to live?” Coming back to Canada, the tests were repeated at the ALS Clinic and the confirmation was received that the diagnosis indeed was ALS. This was in September 2018.
In October 2018, Radicava was approved as a drug for delaying the ALS effects and she was one of the first patients to receive the medication. This was initially taken at the South Health Centre through IV infusion before being taken at home administered by nurses from Innomar. Other medications like Riluzole and Baclofen along with Vitamins were also provided. In 2022, the newly-approved drug Albrioza was also taken in oral form with other medications. During the first quarter of 2023, a choice was provided for Radicava in an oral form.
How did our lifestyle change? It was thrown upside down. ALS affects the whole family, and it was difficult to accept the diagnosis initially. The children, still in their teens, could not accept it and buried their heads in the sand. At the onset itself, I decided that as far as was possible, we will try to maintain our lifestyle and adjust and modify our routine as things changed. One thing that became noticeable was stability. She has had 9 falls to date, and every time she hit her head on the ground, the deterioration in overall functionality was noticed. Another issue was choking while having food or water. This became so problematic that by the end of 2021, she had lost about 30 kgs before her diagnosis weight and had become very weak. She had to the PEG-tube inserted in her stomach in January 2022, which led to weight stabilization but brought other issues like sleep deprivation due to frequent trips to the washroom.
The support provided by ALS Society and the Home Care Program was top notch and words cannot express our gratitude, especially to their respective co-ordinators Michelle and Home Care Occupational Therapist Angie. They were there at every turn to provide equipment and other support promptly, whether it is the wheelchair, transporter, walker, Bi-pap machine, transfer machine, the chair lift. Mention must be made about the drinking water bottle with a long straw supplied by society. The bottle attached to her chair would enable her to sip water at her convenience. Also, the ACETS program supplied a Grid Pad, an eye gaze equipment that enables browsing through the laptop with eye movements.
Slowly, we got into a routine. I would get up in the morning, wake her up, take her to the washroom, change her into her daytime dress and take her to her office chair and desk in the bedroom. With only finger movement for a mouse, I would make sure she is comfortable while seated at the desk. She would browse the computer for spiritual messages, verses from the Bible, inspiring stories from ALS patients, the latest developments in research and medications for ALS using her Pharmacy background, and messages on WhatsApp to family and friends. The home care personnel would come in the morning, and would carry out exercises, start the feed and medications and then would leave. Since I have to go to the office 3 times a week, I usually would be back in the house by the time the homecare personnel leave. I would then provide her feed and then if I have time and the weather is good, we would go to a park, where I would take her around in the wheelchair. By the time we come back, it is preparation for bedtime. However, she would get back to the computer to watch her favourite Hindi serials and browse for more spiritual and scientific articles. Then it is back to bed, with the Bi-pap adjustments and so on. Hence, she is fully occupied for the day.
We had a passion for road travel. We did one long trip in 2019 to Quebec from Calgary touching Ottawa, Toronto, and Detroit on the way. The trip was exhausting with kids helping in the driving, but all of us felt rejuvenated. Due to the Covid situation, no long trips were undertaken till 2022, when we took a trip to New York in May with the full family. By this time Leni needed help to go to washrooms and sometimes it was difficult to find family washrooms on the road trip where I could take her to some friendly gas stations and restaurants, this was made possible. Another trip was made to San Francisco on December 2022 and that was also quite successful. With Covid restrictions being removed, we attend Church Service every week and meeting so many people every week make her feel energetic. Our daughter is involved in ALS research in her Masters at U of C Neurosciences.
The support we obtained from friends, relations, and the South Health Campus ALS Clinic -OT, PT, Respiratory, nurses and doctors was amazing. Friends would take turns to provide food, and support for taking Leni to the Clinic and doctors and laboratory. Support from my co-workers and management was also really great. Sometimes, unexpectedly, total strangers would go out of their way to make us comfortable. It must be also mentioned about the wonderful care and service provided by CBI Homecare caregivers and by the wonderful nurses from Innomar. It was spiritual and experiencing God's love through these wonderful people. Recently, the World Malayalee Council honoured Leni with a plaque for bravely facing a terminal illness with courage and determination. The journey continues…
Making It Possible - Day 25: Jason Schmidt
On January 20, 2022, at the age of 49, Jason received the utterly devastating news that his deteriorating speech, muscle weakness and twitching were due to ALS (Amyotrophic Lateral Sclerosis), also known as Lou Gehrig’s Disease. Symptoms began mid-August of 2021 with slurred speech. Not only was Jason handed one of the worst diagnoses imaginable, he has the rarer and more aggressive Bulbar onset form of ALS, which first affects the muscles involved in breathing, speaking and swallowing. People with Bulbar onset ALS experience a faster decline and shorter survival.
Jason is the proud father of two beautiful girls, Peyton (15) and Riveigh (12) and a loving husband to his wife of 17 years, Bobbie. Before diagnosis, Jason was extremely active, playing golf several times a week, coaching his daughters, playing hockey, and running a growing business designing, installing and maintaining Geothermal heating and cooling systems.
As you can imagine, this past year has been incredibly difficult for Jason and his family. Living with ALS means making constant adaptations. Simple tasks become progressively more challenging and eventually become impossible. In a very short time, Jason has lost the ability to talk, hug his girls, drive a vehicle, text on a phone and use a computer keyboard. Gone is his ability to walk, sleep comfortably, brush his teeth, dress and feed himself, shower independently, drink independently, swallow food, adjust in bed and scratch an itch. There is no coming back from these losses. Eventually, ALS will take away Jason’s ability to breathe.
Besides the devastating physical losses, the emotional trauma is equally as extreme. The shattered dreams for the future… of continuing to build his business, then retiring to the lake. The dreams of family vacations, growing old with his wife, watching the girls grow up, seeing them graduate, walking them down the aisle, and dreams of becoming a grandfather - all taken away.
Since June 2022, Jason has been receiving his nutrition through a feeding port. His primary way to communicate is by using a computer with speech-generating eye gaze technology. He uses a wheelchair for mobility. Inside he is still the same person - still a wonderful father, a loving husband, a son, a brother and a friend. We are beyond grateful that his personality and cognitive skills remain unchanged. He still loves a good prank and teasing his girls. His humour, smiles and laughter are inspirational and help to keep the rest of us going. Jason remains positive and looks at each day with his girls, family and friends as a blessing.
Jason was very active in his entire life enjoying running, biking, skiing, golfing and hockey. This past winter, when he returned to watch a hockey game, with a team has played on for the past 17 years, the team surprised Jason by all wearing a crest with Jason’s hockey number eleven stating “F@ck ALS”. They also presented him with his jersey in a shadow box with the ALS crest. His daughter’s baseball team also replicated the crest with the modification to state “ALS Sucks” as stickers the team will wear on their baseball helmets to bring awareness to the disease.
The family tries to keep as normal as routines as possible and with the assistance of the ALS Society Jason is able to remain in his two-story home in the comfort of his family surrounding him. His new electric wheelchair, controlled by his head movements, allows him to watch his girls play sports and activities. Jason has demonstrated great fortitude and perseverance in the face of the suffering caused by this cruel and unrelenting disease. Despite the disabilities and discomfort, Jason continues to live life with passion and purpose. He views each and every day as a gift. He has maintained his focus on quality time with family and friends. Being a present and committed husband and dad is Jason’s greatest joy and with the support of the ALS Society this is a reality. The ALS Society has supported Jason and the family to live the best life possible with ALS.
Making It Possible - Day 24: Greg Plaxton
Working Together
Greg Plaxton was a former Heavy-Duty Mechanic for 40 years. With his knowledge, experience, and generosity, he helped people around him. He is known to be the “Handyman, go-to-man.” He helped repair the children’s bicycles in his neighborhood. Greg is fortunate to witness the children grow into young adults, up to having kids on their own. Despite being diagnosed with ALS, that did not stop the children he helped years ago come by and waves to him from the window.
Having ALS can affect a person’s hobbies, aspirations, and goals in life but with the continuous help and support from his lovely wife Michele, and their son Tyler, Andrew and his wife Alexandra. They all go above and beyond to help the ALS society. Having a great support team, Greg looks forward to bringing equipment from the ALS Society with him on his vacation to British Columbia. A summer vacation to make more memories as they visit Steven and Alexandra who resides in Ashcroft, BC, and Tyler who in Texada Island. These are the moments that Greg and Michele look forward to. Texada Island in BC is a beautiful location where you can sit on Tyler’s deck and watch whales swim by and listen to the seals in the evening. Being born and raised in Alberta his whole life, Greg enjoys traveling, as he looks forward to experiencing all sorts of neat and new things.
With support from the ALS Society of Alberta, they continue to help Greg and Michele. As everyone works together to make each day the best day possible for Greg.
Making It Possible - Day 23: Mike Crowe
My ALS journey began in 2014 with unusual cramping and muscle twitching. After a series of escalating tests, I received my diagnosis. Life since then has been a whirlwind of changes, some wonderful, some less so. A significant moment was the birth of my daughter, where my condition allowed me enough strength to support my wife during this amazing time in our lives. The difficulties brought on by the disease have been manageable thanks to the unwavering support of healthcare professionals, caregivers, my loving family, and the ALS Society.
Before my diagnosis, I was an avid skier and mountain biker. The need to adapt to my changing physical abilities led me to new interests. I now enjoy computer programming, 3D computer modeling, and electronics. This need for swift adaptation is a constant race to stay a step ahead of disease progression. These skills have allowed me to 3D print custom parts and create tailored solutions to operate my power chair and stay connected with my devices. I am fortunate to have patient caregivers and family members who are always ready to lend a hand, quite literally, to make this journey easier. Their support keeps me intellectually engaged and creatively fulfilled.
The most rewarding part of my daily life, however, is spending time with my family and being the best father I can be to my daughter. I love helping her with her schoolwork and having fun playing with her. She often has me playing Roblox, and she doesn't care one bit that I have to play using just my eyes. It's a wonderful journey to watch her grow and learn, and I feel incredibly fortunate to share these moments with my wife Lindy, who is simply amazing.
My current projects include improving my text-to-speech app, which utilizes a fantastic service for transforming text into speech. This service can create or even clone your voice. I believe that the generated voice sounds very similar to my healthy voice. I'm also experimenting with OpenAI to enhance my communication speed and naturalness. Another project is aimed at streamlining the process of using eye-tracking VR to operate my chair outdoors in bright sunny conditions. As of now, I rely on a caregiver to put it on and take it off, but I'm working on making that process more independent.
The ALS Society has been crucial for me and my family, providing up-to-date research information, timely advice, and much-needed equipment. The ALS Society is a truly wonderful organization, and I am extremely grateful to all the generous supporters of the society.
Despite the uncertainties of living with ALS, I remain hopeful and committed to making each day count. My plans include further exploring my new hobbies, spending quality time with my family, and advocating for ALS research. I believe that sharing my story and raising awareness will contribute to the ongoing fight against ALS.
I hope that my story can inspire others facing similar challenges and contribute to raising ALS awareness.
Sincerely,
Mike
Making It Possible - Day 22: Dwayne Breitkreutz
Hi, I’m Dwayne Breitkreutz. Up until September 7, 2022, I was a fully operational, frontline law enforcement officer. I worked my last shift on the road that day. But to go back a little while, back in 2021, I found out that my younger brother had ALS. He passed away in March 2022. As time went on we talked and compared some notes and I found out that I had some similar issues that he had. I didn’t think anything of it because ALS can be sporadic, which is what I thought his was; I didn’t even know about the familial version of ALS. For me, the initial symptom was really bad cramps that I had been feeling for years. The next thing that happened was I was getting a club feeling in my hands in the morning when I was showering. It felt like I had a club on the end of my arm instead of a hand. I then lost dexterity in the wintertime, in 2021, and thought nothing of it because I had spent many years working on a computer and thought it was maybe a carpel tunnel. One of the ladies in our office had carpel tunnel issues and she complained about pain. I had no pain but still had some similar indicators. I was tested and told that I possibly did have carpel tunnel syndrome.
I then went to see the surgeon for carpal tunnel. At this time, he did further testing and found that some of the things didn’t match up solely related to carpal tunnel. He wanted to do further studies which happened on November 21, 2022. It was at that appointment that I saw his specialist in neurology who told me he was 90-98% certain that I had ALS, but it would take a second confirmation from an independent doctor to confirm that. That was lined up and on December 13, 2022, I went in, did about 4 hours of testing, and it was confirmed that I have familial ALS. This means that my brother and I both have it. Numerous tests were done- blood tests, and DNA tests, to find out if we had some common markers. To this date, none of the known markers have shown up in either my brother or myself, so there must be other markers out there that they are looking for. I figured that from that, there is no good news for the end. But there is good news in the fact that I can contribute to the knowledge base of the disease- ALS- Amyotrophic Lateral Sclerosis. When they start rattling that around you, you don’t hear it the first bunch of times. People know it as Lou Gehrig’s disease, that’s what I knew it as up until my brother had it.
Now I’m getting involved in testing and studies. I will be starting on some medications in the near future. One symptom my brother had was that he lost his balance and couldn’t walk. His statement was, “My nose hit the ground before my feet did”. I’m walking around. I’m not balanced well, but I’m still walking under my own steam. But I cannot breathe. This disease strikes everybody differently. It moves at a different pace. I can confirm that because since I was diagnosed, I have still maintained many of my abilities. Some fine motor skills have been lost but I am still walking around whereas my brother lost it quickly. Even though it’s the same familial disease, it is moving differently in each of us. What this disease is taking, through my participation, is a database, nationally and internationally, that can help future generations. For me, being that it’s familial, it may help my children and my grandchildren. I am willing to do anything to help obtain more knowledge about this disease.
I am getting a tremendous amount of support from the ALS Society, the ALS Clinic, both at the Kaye Clinic and Misericordia Hospital sites. There are students working with us, which is building knowledge for future generations which helps to grow our understanding of what’s happening. The support that’s coming from the ALS Society, the Kaye Clinic, and all of their staff, Alberta Health Services, and Family Community Support Services have been wonderful. The information you get is overwhelming, but if you sit down and sort it all out, it’s a great help.
Thank you.
Making It Possible - Day 21: Mary Jo Fairweather
Lucinda William’s 2003 album has a song with the lyrics, “Everything is Wrong” on it. Being diagnosed with ALS a few weeks after my 65th birthday in January 2022 certainly left me feeling like everything was indeed, wrong.
A couple of weeks after the diagnosis, my husband Michael and I had our first clinic visit at Calgary South Health where we met our incredible support team. Although it was a bit overwhelming, we went away feeling like we had a group of caring people who would guide us through this difficult disease.
One of the people we met was Michelle, with the ALS Society, who explained how much support the Society would be along this journey. What an amazing organization! We’ve benefited from the loan of equipment to make our lives much more manageable, including a lift for our garage, a power wheelchair and a Hoyer lift. But the best benefit the Society offers is the twice-monthly Zoom meetings with fellow ALS patients. This group has taught me so much about living with ALS. I’ve met many wonderful people who raise my spirits and perhaps surprisingly, provide lots of laughs. Having the support of this group means so much to me.
So many friends have stepped up to offer their help and support both here in Calgary and in New Brunswick, where we’ve enjoyed our summer getaway for many years. And of course, I can’t say enough about my amazing family, who show their love and support every day. I never expected my husband to end up being my caregiver, but, not surprisingly, he has taken on the role with positive energy and love.
While we can’t control this disease, we can control how we deal with it. Every day seems to bring a new challenge, testing our physical and mental strength. Thanks to the incredible support of family, friends, the South Health team and the ALS Society, I remain positive and hopeful that a cure will be found.
Making It Possible - Day 20: Rob McCaffrey
Hello, my name is Rob. I’m 68 years old and I live in Spruce Grove, Alberta with my beautiful wife of 43 years, Janice. My wife and I share 2 amazing children together, Amy & Sean. They have blessed us with 4 beautiful grandchildren, Hanna, Clark, Lily & Grant. We’re a close family, we enjoy family dinners with all the kids, summer fishing trips, hockey games, sleepovers with the grandkids, hanging out in my shop sharing endless laughs & experimenting with different recipes on our Smoker BBQ.
I was diagnosed with ALS in July of 2022. Prior to my diagnosis, I worked for nearly 40 years as a locomotive engineer. I always had a passion for operating machines, whether it was hot rods, boats, tractors (I even took some flying lessons before hiring on at CN Rail in 1976). At the time of my diagnosis, I was operating the famous 1919 steam engine at Edmonton’s own cultural tourist attraction, Fort Edmonton Park.
In January, of 2017 I suffered a pretty major heart attack. As a result, I had stints placed in my heart and was put on a few ongoing medications to keep me from having further complications down the road. Some of these medications seemed to slow me down a bit and had me sleeping in my lazy-boy earlier than I normally would. My family noticed as well, but also figured it was medication/heart attack/age related. In 2018 I started to speak a little slower, it was very subtle at first. My speech slowly started to slur after a short time. My initial thought was that I had a minor stroke in my sleep or suffered a bad concussion in a recent work injury. I was referred to a neurologist, who did a few tests on me, and nothing seemed abnormal. So, I continued to work in my “retirement” and carried on with life.
Over the next couple of years my speech slowly got worse and in early 2022, my right leg started to drag slightly. I was referred to another neurologist who ran several tests on me. His diagnosis was PLS (Primary Lateral Sclerosis). PLS is like ALS, with many similarities and commonly mistaken for one another. Yet we were almost relieved with this diagnosis, because although it was not great, it only affects your upper motor neurons. It would disable me, yes, but it wasn’t fatal. I was sent to the Kaye Clinic in Edmonton to see more doctors and therapists, where I was quickly diagnosed with ALS in July.
With my mobility on the decline, I made the difficult decision to retire fully from the career that I loved so much. I couldn’t risk falling or tripping at work and hurting myself, or worse. I had to consider the public's safety, as well as my coworkers' safety.
At the same time, my family and I made yet another difficult decision to sell our much-loved acreage home of 33 years. We built a beautiful life there with so many great memories. Our children helped with the huge undertaking, as well as our wonderful neighbors, family and friends who all wanted to do as much as they could. We moved into a more easily accessible bungalow in Spruce Grove, much closer to my son and his family. It’s a real comfort to have them so close.
Both the Kaye Clinic and ALS Society of Alberta have been a huge support since my diagnosis, providing things like equipment, aids and home visits over the last few months. After learning how much I love hockey, the Society arranged to have me go watch a Calgary Flames game with my son Sean, my brother Willy and his son-in-law Nick. We all got to meet Mikael Backlund who donated the tickets – what a phenomenal experience!
In March of this year, we held a very successful fundraiser for the ALS Society of Alberta which was hosted at the Edmonton Clansmen Rugby Club. It was an awesome night! We had family and friends attend that we hadn’t seen in years. How nice it was to see everyone together showing support for our cause.
As I continue living with ALS, I know I have the unwavering support of my wife Jan, who has been incredibly strong for our family, my children Amy & Sean, and their spouses Joe & Lise, and the ALS Society of Alberta.
Thank you for reading my story,
Rob
Making It Possible - Day 19: Relan Crosby
Relan Crosby’s ALS Story written by Cathryne Wickwire (wife)
On December 10th, 2021, Relan went to his doctor because his left arm was not functioning properly in the shoulder area and was aching a lot. He attended physiotherapy, did exercises that were prescribed, and also had an ultrasound on the left shoulder. On June 20th, 2022, his physiotherapist discussed with Relan’s GP that the exercises were not doing what they were supposed to, and in fact, his arm was losing ground. He suggested that his diagnosis of arthritis and bursitis was not the problem.
On July 28th, 2022, Relan had his first appointment with a neurologist. This appointment lasted over 2 hours and the neurologist suspected ALS. On August 30th, Relan had an MRI and on September 12th 2022, the neurologist confirmed that Relan had ALS, insisting that Relan not work another day. At this point in Relan’s personal journal, he started numbering the days – this was Day Number 1.
Relan was born with a bright and cheerful disposition – he looked for the good not the bad, and did not dwell on the negatives. He decided that ALS stands for Always Laugh and Smile. So, we started an ALS book. The sections of this book included Timeline, Contacts, and Discussion. Re-reading this book has put this disease in perspective. We went from “Everything will be ok; my work has a medical benefits program” to “What! I don’t qualify because I am over 65?”, to finding other agencies that DO put the patient first.
Family, friends and agencies that work with ALS patients have helped tremendously in getting the items that were needed when they were needed. Items like a lift chair that Relan lived in and later became his bed, sitting in it constantly because with just a small adjust, his back would settle down, his legs would be comfortable, and his peace of mind would settle. We moved from an apartment that had 22 outside steps in the country to a seniors’ apartment building in Leduc that was wheelchair accessible. This happened on January 27th, 2023, with the help of EMS. We received commode chairs, portable power lifts with slings to go with them, and a bed that the air mattress adjusted to movement. And, on the 23rd of February, he received a power wheelchair. I noted in our ALS Timeline that it was a red-letter day! This was Day 166 in Relan’s journal, and another change, he could no longer hold a pen in his right hand, and I started keeping track in my personal journal of his days.
Relan chose not to take part in any of the medications that are offered by the ALS Clinic. We proceeded on a day-to-day basis, choosing not to do any searching of symptoms or signs of what’s next, but chose to proceed with each day as it came and handle it the best that we could with the help that was available. As one of Relan’s visitors said, “He handled it with such courage and dignity. I will never forget that visit.”
On Day 170, February 27th, Relan had a tightness in his chest. Relan had started doing personal messages on his phone to each member of his family and to personal friends, so on Day 170, we started transferring these messages onto his computer. On Day 179 (March 8th), we went and picked up a 2004 Dodge Caravan that was a factory wheelchair-accessible vehicle. We took it to our mechanic ,and on March 20th, Day 190, Relan was able to drive his power wheelchair into our van and he was once more able to be more mobile. Day 199, March 28th, Relan has a catheter installed, the reason being that we will be able to have better nights’ sleep. Relan is starting to become very short of breath.
Day 205, April 4th, Relan goes to the Misericordia Hospital and is in ICU. While here, he gets fitted with a BiPAP machine, a feeding tube inserted, his anxiety is worked on, LVR is introduced as well as a cough machine is used. Relan is here until April 19th, Day 220.
Relan was able to stay home for a short period of time. He did not use his electric wheelchair much, his right arm and hand were failing quickly, and he couldn’t use his computer mouse or answer the phone. He is on the BiPAP machine almost 24 hours a day now, with short periods off of it. Because of not enough arm/hand movement, he can’t alert me. The ALS Society of Alberta has provided a bell system that Relan is able to touch just with a slight movement of his finger that will buzz the speaker that I am provided with. We set it up so that when he does touch it the buzzer plays the William Tell Overture or the Lone Ranger theme song – it seems appropriate for a Western movie buff!
It was such a blessing to have Relan back home, and even though things were continuing to change daily, we still got into a schedule that was good for us both. At this point I had decided that it didn’t matter what household chores were left undone, if Relan wanted to watch me play a game on the computer/big screen TV, then that is what we did. He had lost his sense of taste and his desire for eating, but on April 27th (Day 228), our first anniversary, we shared a replica of our wedding supper from the year before. Relan even had a couple of bites of Caesar salad and lasagna.
On May 3rd, Day 234, Relan woke with sharp pains in the lower right-hand quadrant of his abdomen, went back to the hospital and it was determined that with medication and time, his problem could be fixed. On May 4th, Day 235, time was not on his side, and he determined that it was time to leave. So, still smiling and being cheerful he slipped quietly into a final rest at 10:25 pm.
Thank you, Relan, for the example you left for all those that were watching this part of your journey.
Making It Possible - Day 18: Bob Langill
A Breath of Fresh Air
Bob Langill was a former Rig Welder for over 24 years. He enjoyed working from province to province as he built new connections and renewed old friendships from different job sites. In December 2019, life took a turn and his whole world changed, something did not feel right. January 2020 was a confirmed date he was diagnosed with ALS which changed his life forever.
Despite how hard ALS can be on an individual, Bob continued to strive to live each day the best day possible. He would find ways to enjoy the outdoors, by being optimistic with any situations he may face. ALS can take away an individual’s dignity and independence while their body starts to weaken. An individual may find it hard to be motivated to strive each day. Through the help of the ALS Society of Alberta, they were able to help boost Bob’s independence by providing him with a scooter, that will not only help him but also fill his family with joy. Since the diagnosis, Bob has thought outside the box and ventures with his scooter while he takes up a new hobby with photography. Taking breathless photos of nature, and different types of birds as the seasons changed. Capturing every moment while experiencing every breath to feel the breeze from the fresh air. As years pass by, Bob can watch all his 8 grandchildren grow. They are always looking forward to seeing their Papa Bob. His grandchildren would always run with excitement with open arms whenever he is around. The best time is during the summertime when Bob can take his 5 grandchildren who are old enough to ride on the scooter. He would make every minute of every moment count for Ben, Vance, Eli, Kai, and Claire in making memories to remember whenever they cruise with their Papa.
With the continuous support and love from his amazing wife Sandi, their children, grandchildren, and the ALS Society of Alberta, Bob journeys on and look forward each day with a breath of fresh air.
Making It Possible - Day 17: Susan Lang
Near the end of August, 2021, my husband, two daughters, granddaughter, and I noticed that my speech was starting to slur. I did not think too much about this at the time. For the next three months, my speech continued to slowly decline, until a new symptom appeared. I began to choke a lot when eating or drinking; I even began to choke on my own saliva. I made an appointment to see my family doctor in January 2022.
My husband, Rick, went with me to ensure that the doctor could understand what I was saying. That appointment was the start of my journey meeting a number of doctors and going in for tests in a number of different fields of medicine. All had the same answer that nothing was wrong from their exams or test results. I went to the Speech and Swallow Clinic at the Glenrose Hospital, and the results of their test was that I had a decrease in muscle strength in my tongue: cause unknown. I met with a dietitian after the results and she went over my diet, ( I’m celiac,) and made helpful suggestions on what to eat to reduce the chance of choking while eating. They also referred me to the Speech Therapy program, only a six-month wait to get into. At least I had some indication on what was happening.
Over the next six months I met with my family doctor again, inquiring if I had a mild stroke or anything else that could cause the symptoms that I was having. My speech was still declining, not noticeable on a day-by-day basis, but friends who had not talked with me in a few weeks or a month could notice the change. My family doctor got me a referral to a Neurologist for December 1, 2022. Rick and I arrived early for the appointment, and our daughter Kimberley insisted on coming with us. We met with the doctor, who did a clinical exam and then an EMG. At 10:00 AM that morning, his diagnosis was ALS.
Our world changed in a nanosecond. He said that he would arrange for a MRI on the brain and refer me to the ALS Clinic at the Kaye Centre in Edmonton. A lot of tears were shed on the way home. We talked to our oldest daughter, asked her to come over, and told her the diagnosis. My sister also came over and we chatted. More tears. Rick picked up our granddaughter from highschool and brought her home with her mom and aunt. We told her the news, more tears. Some difficult phone conversations were made with family and friends – all were devastated by the news and very supportive. I received a call from the ALS Clinic, booking an appointment to meet with another neurologist to confirm the diagnosis in January. His diagnosis was Bulbar Onset Amyotrophic Lateral Sclerosis.
We met with the ALS Team at the Clinic. They were all very supportive, and willing to spend the time to answer all of our questions, no mater how trivial. They told Rick to call anytime with any question or concern, and that they are there to support us as we are on the journey with Susan. The ALS Clinic said to register with the ALS Society of Alberta, as they have many supports for both the patient and family caregivers. It was the first website Rick visited for information on ALS and how to support the individual with ALS. He called the 1-800 number and talked to a person in the Calgary office. She was extremely helpful and said that she would transfer him to the Edmonton office, as that is where we reside. He had an excellent conversation with Stephanie Saga, who helped him through completing the registration process while on the phone. She sent an email regarding the process and told us to call if we had any questions. A few days later, we received an email from the ALS Society inviting Rick and I to participate in online Zoom support groups, with me in the patients group and Rick in the family support group. Thus far I have participated in one session, as my speech is altered so it is difficult to understand what I am trying to day. Rick has participated in a number of family group sessions, and all have been extremely helpful in sharing our story, listening to other caregivers stories, and the positive exchange of group members supporting each other. One participant shared that her father with ALS had a stair lift installed so he could continue to access his “man cave” in the basement. When I had a respiratory illness and lost weight and strength to the point it was challenging for me to climb the stairs, Rick thought about that conversation.
On the next caregivers support group session, he asked a question regarding stair lifts. Stephanie called him and let him know at my next ALS Clinic session to request a home assessment and a PT or OT will come to the home, make an assessment of what health care aids are required, and the ALS Society will make it happen. I could not ask for better support than that. To help with the choking and to ensure that I do not lose any more weight, the ALS Clinic suggested a feeding tube. I had the PEG Tube “installed” on January 19, 2023 and the choking issues dropped significantly to the point where it has been days between episodes. I can still eat almost anything that I want to in addition to the formula I receive via the “tube” at the present time. I started on Riluzole, an ALS medication that had been used for almost twenty years at this point. Hopefully, it is slowing my journey with this horrible disease.
I just started on Glycopyrrolate, which is supposed to help reduce the amount of saliva the body produces to a much lower level. A nice benefit about the G tube is all medications are given through the tube ,so I do not worry about choking issues trying to swallow pills. I have signed up to participate in clinical trials to find a cure for ALS. Hopefully a cure will be found sooner rather than later. My symptoms at the present time are speech. choking, swallowing, excess saliva, cramping in both hands, and loss of fine motor skills in my right hand. No mobility issues at this time, thankfully. I am starting to use a text to speech app on my iPhone and iPad to assist in communication with family and friends. I am getting better at using the app the more I use it each day. I still like to walk to the mail box each day, chat with neighbours as best I can, and spend quality time with our two daughters and two grandchildren.
Rick and I still make a Starbucks run occasionally, and now with the return of warmer weather the occasional DQ sundae. I want to spend as much quality time as possible with Paxton, who is turning two years old at the end of May. Reading is still a passion – the library is close by, which is a good thing as I am there almost every week. I would like to thank the ALS Society of Alberta for their ongoing support as I continue my journey with ALS. Hopefully it will be a long and slow journey.
Making It Possible - Day 16: Rhonda Morgan
The early 2000s was an extremely stressful time in my life; in September 2000, I lost my grandma to a stroke, and 8 months later I lost my dad to cancer. I ran a very busy national non-profit organization, was a single mom to an eight-year-old son, and on top of it all, purchased my first home in August 2002.
In 2003, when my foot started dragging and I took a few unexplained falls onto my backside, I chalked it up to stress. When I went to run for the phone one day and discovered I could not run, I went to the doctor who referred me to a neurologist. After many tests, I was eventually diagnosed with Primary Lateral Sclerosis (PLS) in about 2004.
In primary lateral sclerosis, the nerve cells in the brain that control movement (upper motor neurons) slowly break down and fail over time. This makes the nerves unable to activate the motor neurons in the spinal cord, which control voluntary muscles. This loss causes movement problems, such as difficulty with balance, weakness, slowed movement and clumsiness, and problems with speech and swallowing.
I was already walking with a cane by the time I was diagnosed. Signs and symptoms of Primary Lateral Sclerosis usually take years to progress and generally begin in the legs. My balance was affected next, as it became very easy to knock me over. I went into the washroom of a restaurant and the door swung back, causing me to fall and break my shoulder. From then on when I went out, I used a walker.
Once the doctors knew what I had, I was contacted by the ALS Society of Alberta who provided me with all the equipment I needed to manage this disease. They were and continue to be my lifeline if I need anything from equipment, information to moral support.
I was also invited to come to the ALS Clinic at the South Health Hospital, which brings all the doctors, nurses, and specialists together, so that once a year, I am getting all the medical attention I need specifically directed at PLS in just a few short hours. So very much appreciated.
Over a few years, my PLS progressed to include slow, slurry speech. This continues to be the hardest part of the disease for me. I cannot even stand to hear my voice.
I continued to work until I was forced to retire in 2010, from the organization I had founded and worked to build for 25 years. I was very hurt for a long time and did not know what I would do. I felt useless, without purpose. Eventually, I turned to my bible and to God, who has shown me his grace and the blessings in my disease.
I live a very blessed life. The ALS Society provided me with a power wheelchair which has allowed me to volunteer my time once a week and go to an adult day program, where I enjoy playing cards and other social activities with new friends. I am still able to walk short distances and around my garden with my walker. I am still able to speak, slowly but understandably. I do my own housework, gardening, and some cooking. I have no pain, and my disease has allowed me to learn more about God and how wonderful life is when you are dependent on him.
Making It Possible - Day 15: Larry Heron
The Unshakeable Love
Larry Heron received his diagnosis of ALS on January 3rd, 2023. Before the diagnosis and mobility changes, he enjoyed golfing. He was recently qualified to undergo three types of medication from the Physicians at the ALS clinic in hopes to find a cure.
Providing care for an individual can be very difficult as the disease progress. An individual and their families will experience many various types of emotions and challenges. Throughout Larry’s journey, he’s received unconditional love and support from his wonderful wife Doreen. The two high school sweethearts have been married for sixty-one years. Doreen will always go above and beyond to help support him, both mentally and physically. They love travelling all over, especially in Hawaii. Despite the changes they needed to adapt to, their love for each other will always be unshakeable. They work as a team to not allow ALS to hinder them in creating memories each day. Larry’s favourite quote is “Don’t cry because it is over – smile because it happened.” They are trying to live that way, counting every day as a gift. Both love spending quality time at their lake house on the weekends, and sometimes with their children, grandchildren, and friends who can come out.
This journey is never easy, and with the continuous help of the ALS Society of Alberta, they continue to support Larry and Doreen with the Equipment program. Programs like these can help make trips to their lake house much easier while creating more unforgettable memories.