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.

Making It Possible - Day 14: Graeme Drysdale

Hello, my name is Graeme Drysdale and my road to being diagnosed with ALS started in early 2022. I would wake at night with severe cramping in my feet and calves, and my stomach would tighten up whenever I would bend over to tie my shoes. I later noticed some soreness in my left foot when walking to work and not being able to move as fast when running. I chalked this up to being 45 years old and not drinking enough water or stretching. My left foot soreness progressed over the coming months, and I started to walk with a slight limp. On August 10th, I read a news release that told the story of Börje Salming and his ALS diagnosis. I closed the door to my office and decided to do a little research on what the signs and symptoms of ALS were. I was shocked to learn about ALS-related drop foot, muscle cramps, and muscle spasms (fasciculations)… all of which I had. The realization that I possibly had ALS sunk in, and when my wife saw my face later that evening, she knew something was wrong. I was able to see a neurologist within a week and then spent the following week in the Foothills Hospital waiting for an MRI, EMG, and other diagnostic tests. It was a difficult time, and I was unfortunately diagnosed with lower lumbar onset ALS. I let my manager know the bad news and stayed up late many nights with my wife trying to figure out how to tell our two young children that their dad had a terminal illness. I struggled with an inability to sleep, depression, and hopelessness.

My amazing wife, family, close friends, and co-workers got me through the next couple of months until I felt like I could breathe again. I now have foot drop in my right foot, a loss of muscle/strength in my legs and my hands cramp up frequently. Stairs are very difficult to navigate, and I typically walk with an ankle-foot orthosis and a cane. My lifestyle has changed, but I’ve chosen to focus on all the positives in my life. I can no longer actively participate in my kids' sports, but I can still cheer them on and volunteer in other meaningful ways. I had to step away from a rewarding career, but have an opportunity to pick away at my bucket list. Hiking in the mountains, camping, and playing hockey (some of my favourite activities) are too difficult, but I can still travel, sit in the sun, and visit with the people I love. I have bad days and know there are going to be difficult times ahead, but keeping a focus on the present has really helped my mental health and enabled me to be thankful for the memories I get to create each day.

I’m extremely lucky to have an outstanding support system around me. I could write pages on everything my wife and children have done for me in the past 9 months, and I would not be here without them. My employer has been so supportive and has gone out of their way to help me and my family out. We have amazing family, friends and neighbours who are always checking in and keeping things light and fun. The ALS Clinic at the Calgary South Health Campus and the dedicated team there are true professionals, and they make going through this process as worry-free as possible.

I’m thankful that I live in Alberta and have the support of the ALS Society. Karen Caughey and Michelle Savard organized a Flames game for my family, and we had the absolute pleasure of meeting Michael Backlund. We have also utilized the ALS Society’s Support for Champions program that helped fund my children’s hockey and swimming activities and a recent research update which was extremely valuable. I also had a motorized chairlift installed in my home that was 100% covered by the ALS Society.

My plans for the future include participating in Betty’s Run for ALS this June, more travelling, and creating as many memories as possible. We are going to try and stay in our two-story home and will be making some home renovations to accommodate a wheelchair. I’m also looking forward to a couple of fishing trips this summer and teaching my soon-to-be-teenage daughter to drive.

Working with the neurologists at the ALS Clinic, we decided to start taking two medications to slow the advancement of ALS; Riluzole and Albrioza. I’m also in the process of applying to take the new pill form of Radicava. I have not yet participated in any other drug or treatment studies as I’m focusing on getting myself into a good routine and feeling my best before adding anything else to my treatment plan.

Making It Possible - Day 13: Mike Redford

Great Memories 

When I was young, way back in the early 70’s, the term “family BBQ” meant an enjoyable day of fun and games with family and friends at the nearby campground around a fire pit, roasting hotdogs, grilling hamburgers, finishing off with flaming marshmallows on the end of a stick. 

Then in my late teens I was invited to a party in the big city. In the backyard, turning slowly on a rotisserie over charcoal, was a rib eye roast. This great smelling hunk of meat was being lovingly painted with sweet tasting BBQ sauce. Once I tasted that delicious piece of heaven, I decided right then and there that this was something I needed to create on my own. Burnt hamburgers and over-cooked steaks were going to be a thing of the past. 

It was a huge learning curve, but a few cows later, I seemed to have figured something out because my BBQs were enjoyed by everyone who came. Good times and great memories were being made all summer long. And because we’re Canadian, even a heavy winter blizzard couldn’t stop us. Many roast beef sandwiches were left for Santa Claus over the years. 

But then it all changed. Several years ago, I started to notice something wasn’t right. These same 8lb roasts I had been carrying out to the backyard rotisserie, seemed to be a whole lot heavier. I nearly dropped one bringing it back into the house as I tried to hold it with one hand and open the door with the other, something I had easily done hundreds of times in the past. Things seemed to be pulled down by gravity quite a bit more than I remembered.

Like so many others in the ALS community, I got the devastating news no one wants to hear, “You have ALS.”  It was September 28th, 2020, the day I thought I died. The thoughts of slow paralysis were pretty much all I could think of. Losing the ability to hug my wife, my grandkids, my mom, rubbing my dog’s belly, wiping tears from wife’s eyes when she had a bad day. These thoughts and so many others would keep me awake in bed, tears silently flowing down my cheeks. All these thoughts of what I was going to slowly lose and how many things I wouldn’t be able to do was consuming me. I felt alone. 

It didn’t take long, but something changed in me. I began to see how much support I have from my family and friends. Not to mention the amazing heroes I never even knew were out there. The doctors, counsellors, and all the support staff at the ALS Clinic at the South Health Campus. The ALS Society of Alberta, with all their support and equipment. I was amazed!

I felt I had to adjust and begin enjoying every minute of what was left. I wanted to continue making great memories for everyone around me, and I knew an amazing place to make those memories was in the backyard, having beers and creating a delicious meal for everyone around. But I wasn’t able to do it myself anymore. I would need to rely on my supervisory skills and “coach” someone with working arms and hands. This is where my amazing wife Julie and brother Wayne stepped in.

After a promising start, we decided that we were going to take this BBQ thing to the next level, so we bought a smoker. First it was simple cooks: meatloaf, bacon bombs, chicken wings, pork tenderloin jerky, ribs. Then, with my helpers by my side, it was time to try a 16lb brisket. After an all-night cook, several beers, and a slight hangover later, I served my first ever smoked brisket. And just like before, we were in the backyard making great memories with close friends and family. It was amazing! And proof that with some help, I could still create something tasty and bring everyone together.

I no longer think about what I can’t do or tear up thinking about old backyard BBQ memories. I am firmly planted in the here and now, and I’m making amazing new memories. 

Thanks so much to my amazing wife Julie, my wonderful brother Wayne, mom, and grandkids. You have no idea what you have done for me. Love you all!

Making It Possible - Day 12: Sue McMaster

If you’ve been touched by ALS, you know it’s a relentless thief. I was diagnosed in September 2020, at age 59, after about a year of symptoms.

Regardless of how it first reveals itself, its mission is to take over your body, step by step. It typically leaves your cognition and your eyes alone, but it takes your strength, your independence, and your stamina. It robs you of the ability to chew, swallow and eventually breathe. Muscles I spent years nurturing through yoga and exercising have evaporated. It stole my voice first and along with it my participation in my beloved show choir. I’ve graduated to pureed food, feeding tube nourishment and full-time wheelchair use.

Sounds grim, right? It is. But that’s not the whole story.

There’s also an amazing support community whose primary purpose is to make easier the lives of patients like me and our families as we transition through the phases of diminished capacity.

A year ago, after a series of falls, a big fall fractured my hip. One emergency hip replacement later, I was recuperating at the Foothills. The physical and occupational therapists were amazing. They helped me prepare my body for my new reality.

During one particularly sleepless night, when the noise on my unit was continuous, I decided it was high time to go home to peace and quiet and my own bed. Physically I was progressing nicely, but my home isn’t designed for a person using a walker. What changes needed to be made to allow me to go home? 

·      How will I get in the house? There are steps into both the front door and garage. At least one ramp needed.

·      There’s a single step between my living room and dining/kitchen area. Perhaps another ramp?

·      What about walkers? One needed on all three levels.

·      How will I handle the stairs up to the bedroom/bathroom and down to my office and TV room? Chairlifts?

·      Once I make it to the bathroom, I will need an elevated toilet seat and an armrest frame plus a bench for the shower.

This seemed like an insurmountable list.  I talked it through with the OT in the morning. We made a few adjustments and she said she would relay it to Michelle, my outstanding coordinator at the ALS Society. I didn’t yet understand how much magic the Society can produce in short order.

Michelle relayed the list to the equipment loan department who pulled from their inventory of 1,500 pieces. They also pulled in vendors and installers as required. My daughter quarterbacked deliveries and installation. Together, they made it all happen in just two – yes 2! – days.

And the most amazing part? All this equipment is on loan, for free. Literally thousands of dollars of supports and I’m not on the hook for any of it. How impressive is that? And that includes the power chair and garage lift I’ve needed since.

No one wants to receive an ALS diagnosis. But when you do, its comforting to know the ALS Society has your back. Responsive, kind, magical.  The ALS Society makes the impossible possible, every single day. I’m eternally grateful.

Making It Possible - Day 11: Mark Siron

Mark has always loved the outdoors - camping and fishing on summer weekends. He enjoys biking at Fish Creek Park and mountain biking at Kananaskis. He is a handyman (plumber, electrician, carpenter you name it), and an auto mechanic. At dusk, he will sit on the deck with a cold beer in his hand and watch the sun set until dark. 

ALS progresses at a different rate for everyone. Mark was diagnosed on April 17, 2020. 

I planned our trip to Kelowna the year he was diagnosed, as he was still able to drive then. We then flew to Vancouver the following year, as he was not able to drive anymore, and as of last year, he’s mostly in bed with a BiPap and Trilogy. Every day has been a struggle since the diagnosis, but this is a reminder to try and always make the most of those beautiful days… Making it Possible. 

In this picture, taken on April 7, 2023, we went to Fish Creek Park, with his new tilt manual wheelchair and Trilogy machine. I can’t say thank you enough for all the support from the AHS Home Care/ ACETS Program, Respiratory Outreach Program, ALS Clinic and The ALS Society of Alberta. With all their help, Mark is still able to enjoy some of the things he loves. The amount of time put into every assessment is truly appreciated. And the time our Coordinator from the Society spent checking on us through emails, telephone calls and texts to make sure we got the right equipment, give words of encouragement, or ears to listen sympathetically; Making it Possible to still have a great quality of life. 

We are strong, but I know we’re all mentally struggling. I wouldn’t wish ALS on anyone, but just know that some of us are out here, thinking about all of you, and praying for you through this journey.

“When life gives you a hundred reasons to break down and cry, show life that you have a million reasons to smile and laugh.” Psalm 56:8

Cheers!

Grace

Making It Possible - Day 10: Darryl Johnson

My name is Darryl Johnson and I was first introduced to the ALS Society of Alberta in May 2022. 

I had been on a medical mystery tour across the previous 2 years, having over a dozen tests and assessments by over two dozen doctors, all trying to determine what was wrong with my body. ALS is very challenging for doctors to identify, and it wasn't until April 2022 that I received my diagnosis. In an instant, the twilight years of my retirement changed. I was transferred to the Calgary ALS Clinic, where I learned about the support provided by the ALS Society.

One of the earliest indications of things changing for me was in the fall of 2018 at a 10 Pin bowling team-building event with my work colleagues. I had always bowled using a 14 lb ball, but this time I noticed my legs were wobbly when I rolled the ball. I thought I was just out of shape. In 2019, my left leg buckled a couple of times.  Once while traversing down a stairway, and another time when I dismounted from my mountain bike. I was still working at this point, although managing project workloads was becoming too much to keep up with, and I decided to retire at the end of 2019. In 2020, my gait when walking became abnormal so I began a quest with my GP to find some answers.

It has long been my philosophy in life to learn to be content in whatever circumstances I find myself in. Undeniably, ALS has its challenges, but who doesn't have challenges in their life? A wise man once said life is like the shadow of a flying bird, always changing, but we press on. My wife and kids are a huge help to me, and the community created by the ALS Society of Alberta is always encouraging and supportive. They have taught me so much.

When I began to lose my ability to walk very far, the ALS Society loaned me a power wheelchair to use, so that I can get out into the community. They also provided a portable ramp that I can drive on from street level up into the front entrance of our home, and a powered lift that carries me and the power chair from the front entrance up to the main living level of our house. The supports from the ALS Society have helped me stay connected with others and feel like I can still contribute. Without question, the ALS Society of Alberta is "making it possible" for me and hundreds of other Albertans living with ALS.

Darryl Johnson

Making It Possible - Day 9: Ralph Scott, Betty's Run 2023 Ambassador

Hello, my name is Ralph Scott and the journey to my ALS diagnosis began with several years of health issues. My previous family physician dismissed issues due to me being a Type 2 diabetic and upon his retirement, I was lucky that Dr. Gradwell agreed to take me on as a patient. The first thing this new Dr. said to me was “go ahead and tell me how you’re feeling, I’m listening”. What a complete 180 as my previous physician would always say “listen to me”. During the introductory appointment, we reviewed my medical history and weight loss and he advised me that my calcium levels were quite high going back to 2007. Several months later after surgery for “hyperparathyroidism” the little toe on my right foot didn’t feel right. After consulting with Dr. Gradwell a referral to Alberta Neurological Centre was booked. In November 2021 after two consultations, I was diagnosed with ALS. At first, I was devastated, but the more I thought about it the more it made sense. My main concern is for my wife, Susan, and our family as I was worried about them and our future. As time goes by, I’m more accepting of my condition and what is in the future for us.

In my career in transportation, I’ve worn many different hats from driver/owner operator to administration of various companies. I ask myself if the petroleum and chemicals where we were required to top load the tankers without proper personal protective equipment played a part in ALS.

In 2018, Susan and I downsized and moved into a new home in Mahogany, which turned out to be a blessing due to the proximity of the ALS clinic at the South Calgary Health Campus. In 2019 our miniature Daschunds; Fiona & Kelci came into our lives, originally we had planned on only one puppy. Fiona chose Susan, and Kelci chose me. As we were leaving discussing which puppy we wanted the breeder messaged us asking if we would consider both puppies. Kelci was born with a congenital eye condition and she was concerned no one would adopt her and did not want her to be alone - we agreed and there’s not been a dull moment since! We are also very thankful that just prior to the diagnosis, my daughter, son-in-law, and granddaughter Aurora moved back to Calgary from Victoria. My son also lives in the city, and Susan’s son is in Vancouver, it’s wonderful to have such a great support system.

Upon being diagnosed, the support system through the ALS Clinic as well as the ALS Society of Alberta was activated within days. I am so thankful for everyone who has become part of my care team – all are so dedicated, compassionate, and sincere beyond belief. Currently, I’m undergoing Radacava treatments which require infusion for 10 days within a 14-day period followed by 14 days off. I am also participating in a clinical trial through the University of Calgary with Berchman, Cassidy, and Janet.

There are two things in life that I believe, one is that the journey of your life is a path already planned for you. Second, a colleague once said to me that “adversity doesn’t build character, it brings it out”, I believe this to be so true. Throughout our lives, we experience many forms of adversity and grow and learn from it. It would be easy for me to be in a room with the lights turned off and hugging my knees rocking back and forth, this would accomplish nothing. I choose to accept the challenges I’ve been dealt and be forever grateful for all that I have in my life rather than mourn what I’ve lost.

Making It Possible - Day 8: Colleen Olson, Edmoton Walk Together For ALS Ambassador

Hi! I’m Colleen Olson, and I have been an ALS warrior since my diagnosis on June 11, 2021.

My pre-ALS life was crazy busy and physically active. I completed a half marathon the year I turned 50 and normally walked at least 5 km daily with my dog Obi. I initiated fitness challenges at work,

competing against others who were mostly 15-20 years younger than me. The beast that is ALS started to change my life’s journey with symptoms starting the summer of 2020 – I just didn’t know they were symptoms of anything, never mind ALS.

Looking back, I can identify a number of symptoms that showed their faces in the summer of 2020. There was the extreme cramping in my left leg, which often woke me up at night. I explained it away as a lack of magnesium or dehydration. The muscle twitching in my abdomen, which I found odd but ignored. The sharp pain I got when I occasionally lifted something heavy, which I thought might be a hernia but was really my core muscles spasming."

In late August 2020, I was walking my dog with a friend and fell when my dog did a hard jerk on the leash. I got up feeling foolish and continued the last kilometer of the walk feeling fine. The next day I was walking down the street to my neighbours and realized that I was not walking normally. To make a long story short, the limp got worse and, by February 2021, had turned into foot drop. The road to diagnosis started in March 2021 with physio visits, MRIs, EMGs, and finally the visit to the neurologist who confirmed what I already believed (the physiatrist’s report indicating possible Motor Neuron Disease was all I needed to research what was going on).

So, I have ALS, what next? Having so much to think about caused an inability to sleep. I could not focus at work and left on disability within two weeks of the diagnosis. My husband, who was working in BC at the time, retired about a month later so we could spend more time together. He is an amazing guy who does everything he can to make my life wonderful.

Next were appointments, appointments, appointments, lots of appointments! There are the ALS Clinic’s multidiscipline appointments, where I see six or seven medical professionals, who all take great care of me. Infusion appointments, ten days each month to receive one of the progression delaying drugs. Appointments for the drug study I am able to participate in, and finally, the appointments for the two research studies I participated in. At first, all of this was overwhelming, but once we got into a routine, it did not seem so bad. I have met so many wonderful people through the appointments.

Over the past couple of years, we have taken a couple of vacation trips. We have gone on one to Niagara Falls, one to Vegas, and we have a cruise to Alaska booked for this coming July. Careful planning for my needs before we go has made the trips go smoothly. These trips are wonderful, but the best times leaving our home are to see family and friends.

We are blessed to have five wonderful grandchildren, and another on the way! These little humans bring me so much joy. We are also blessed to have extended family who have made visiting me a priority. In the summer of 2022, we had most of my sisters and their families come for a family reunion. It made my heart so full to have us all together having fun. Having an active social life with wonderful friends who either host or come to our place for coffee, dinner, or game nights is also incredible. All of this personal contact is medicine for the soul, and I am very grateful that so many bring sunshine to my life.

Last summer, I was overjoyed to be able to go for walks again, as the ALS Society of Alberta loaned me a Colibri power scooter. What a difference being able to get out on the trails I used to walk made to my days. The fresh air and being able to go with my husband when he walked our dogs really helped my state of mind. I hope that I am still strong enough to do it again this summer!

The scooter is not the only thing I have received on loan from the ALS Society of Alberta. Since registering in the fall of 2021, I have also borrowed a wheelchair, a platform walker, and a porch lift. The equipment loan program really helps keep out of pocket costs down, and I am very thankful that it exists.

The ALS Society of Alberta has provided me with so much more than equipment. The Client Services Coordinators have also provided me with support over the past year and a half. They are very special people who like to learn about you individually and remember what is going on in your life. I regularly attend the ALS Support group for those diagnosed with ALS. The Society organizes this group and it has been something that I look forward to both for information from other patients and for fellowship with people who understand what I am going through. The hour and a half, twice a month, meetings are a time where we joke and laugh but also cry and support. The people in the group get to be like a family.

Since my diagnosis, my mantra has been, “Nobody is guaranteed a tomorrow.” Some may think that having a mantra like that is morbid, I believe that the phrase is all about living your best life today. This does not mean that I don’t have sad moments, I definitely do, but I am a practical person who is thankful for the abundance of blessings that I have in my life.

Making It Possible - Day 7: The Walk with Kari to End ALS

The Walk with Kari to End ALS was created by the many friends and family of Kari Evans in her memory. Kari was a one of a kind lady who was admired by everyone around her. She was a wife to her husband Dale and mother to her two kids Shanelle and Bryson, as well as a beloved friend by many. In short, Kari was sunshine. She was never seen without a smile or a skip in her step. She was known for her loud contagious laugh and her happy personality. She enjoyed life and all the little things. A couple of her favourite things included going for a run and having coffee on her deck in the sunshine. Kari was diagnosed on August 12, 2019. Kari was a runner. She loved to run as it was one of her favourite pastimes. She had noticed weakness in her leg that kept getting worse. The diagnosis hit hard, as she had just recently lost her mom to the same battle, just a couple of months previous. She had just watched it all take place and then with her own diagnosis, watched her world come crumbling down. This was the point in time when we discovered that we are dealing with Familial ALS. This type runs in family genes.

First, it was Kari’s Grandmother, then her mom and now her. As hard as it was for her and for everyone around her discovering that diagnosis, she had hope. Shortly after her diagnosis, she was enrolled in a clinical trial that took place in Montreal. Kari constantly looked for the positive side of every situation and kept her spirits as high as possible. She was the person that helped the people around her look for the brighter side of every situation and knew that everything happens for a reason. She loved all the doctors, nurses and researchers that she came across, and they loved Kari. Travelling to Montreal every couple of weeks wasn't easy. It especially became hard when Covid hit and travelling was limited. Soon enough Edmonton opened a clinic where she could get her treatments.

Eventually, those trips got harder and Kari’s mobility became the limiting factor for her to be able to travel to get the treatments. Kari passed away on November 14, 2020, with family and friends by her side. Kari’s community is determined to not let her legacy die so last year, with the help of the ALS Society of Alberta, they have created the “Walk with Kari to End ALS” fundraiser. Once again this year we will gather as a community to raise money and awareness to help get one step closer to finding a cure. It is also a way to carry on a tradition to help her keep fighting from heaven and have a day we all come together to remember our amazing friend.

Making It Possible - Day 7: Maureen LeBoeuf

My mom, Maureen LeBoeuf received her ALS diagnosis in March of 2021.

It is easy when you think of this disease to be filled with sadness, anger, uncertainty, and loss…and each of those emotions has a rightful place within the experience of this disease.

However, I would encourage you to also understand and see that this disease magnifies other emotions and experiences as well. Like the love of a family, the strength and bond of a brother and sister working together to provide the care required for a mother that was always there for them, or the unfiltered love between a husband and a wife who have spent the last 56 years building a family and life together.

It is possible, that many would never see the passionate work of complete strangers who provide guidance, encouragement, vital equipment and support with loving patience and a seemingly never-ending supply of energy like Stephanie and the ALS Society.

From the outside, those unaffected by ALS may only see the burden of this disease which at times can be overwhelming. The stress and anxiety can be crippling, the emotional pain devastating…But with the help of organizations like the ALS Society and the amazing individuals who do far more than just work there, you come to understand that you are not alone, my family came to understand we are not alone and I came to understand that I am not alone.  

You see, together our weaknesses are lessened, our strengths are fortified and our love is multiplied. When you think of my mom or my family it would be easy to allow the darker feelings to dominate.  

However, I would ask you not to dwell on this but instead to see the many examples of strength, support, love, and joy that this experience is blessing us with. Although there are hard moments, please know that as a family we do not feel drained, or burdened. We do not feel tired and weak or sad and lonely…in fact, quite the opposite. We feel energized and strong, we feel calm and centred, and we feel loved and loving.

Since my mom's diagnosis, this has been our focus. Wherever this journey takes us, know that the human spirit is resilient and those that fight against this disease will not tire, we will not stumble, and we will not lose our focus. We determine what to focus on and the meaning that we will attach to it.

There are not enough thanks my family can give to the ALS Society for their support and guidance during my mom's ALS journey. You are seen and you are appreciated. ❤️

-The LeBoeuf family.

Making It Possible - Day 6: Lori Huolt, Camrose Walk Together For ALS Ambassador

“My journey started a little more than 4 years ago when I received the news, “You have ALS.” Those words shattered my world. How could this be? I felt healthy, happy and strong despite a little trouble with my right hand. As we know sometimes life has a way of throwing curve balls when we least expect it and I thought to myself, “We now have to play this new ballgame.”

Sharing this diagnosis with my family and friends was really difficult. Once the shock of this news was realized, the outpouring of love and support was truly amazing as they rallied around me and we started down this path. We have always tried to live every day in the best possible way and this was a real-world reminder of how important it truly is to not take any day for granted and never pass up the opportunity to say “I love you.”

It took some time to reevaluate our new situation and we started planning for the new future that I have been dealt. We have been blessed to have been able to travel a lot in life and have met many great people who frequently reach out just to say “Hi” and “I hope you are doing well.” This means so much to me. The world is full of great and kind people.

We continue to travel when possible and this is in part due to the great support I receive from the ALS Society of Alberta. I have been provided with many items that help to make my everyday life more comfortable and help me deal with the difficulties that ALS brings with it. When the ALS Society receives your donation, be assured that those of us with this disease appreciate the support!

My happy place continues to be my family as we are so lucky to be a close knit family and we have always faced any adversity together. My husband, sons, daughter-in-laws and our very special granddaughters, Blake and Annie, are my shining lights - how lucky am I? As ALS has limited my ability to communicate with my granddaughters, we have developed an amazing way to communicate with no words required - they are truly my world!

My final message to everyone… Please do not feel sorry for me. Continue to smile. Life is good - not perfect but so very close!"

Register or donate to The Walk Together For ALS events here.

Making It Possible - Day 6: Ross McGloan

Hi, my name is Ross McGloan. I am married to Lisa McGloan we have two children, Patricia (Chris) and Tyler (Megan). Together they have blessed us with 5 grandchildren.

My ALS journey started about 7 years ago. We had retired in Creston BC. I started having problems walking, shortness of breath and leg cramps. My doctor at the time wasn't sure what was wrong. We had decided to move back to Alberta in Langdon, near our children. My doctor here sent me to an ENT doctor because I was losing my sense of smell. He then sent me to a neurologist, he did an EMG which confirmed my ALS diagnosis. Lisa and I were both sad and in shock, knowing what the outcome would be. My aunt had passed away from the same disease 30 years ago. That’s when we were introduced to the ALS Society and ALS Clinic.

Lisa and I are so grateful to the ALS Society for their love, support, and generosity. Through their equipment program, I have been able to enjoy quality time with my family and friends. The support and care received from the Clinic have helped in facing many challenges that come with this disease. They both truly care for your needs and the support given to your family. I am presently on Toferson injection in my spine once a month at the clinic. Lisa has not left my side, nor have my family and friends, which I am truly grateful for. We are enjoying family gatherings and looking forward to spending time outdoors. Please support Betty Run and/or the Walk Together for ALS to let the Society continue to help families like mine.

Looking forward to seeing all at the event.

Cheers, Ross

Making It Possible - Day 5: Dan Reinhart

So, there’s two muffins in an oven. One muffin says, “It’s really hot in here!” The other muffin says, “Oh my god, a talking muffin?!”

I’m Dan. I’m 39 years old. I have 3 amazing kids (17, 15 and 4) and my wonderful girlfriend of 8 years, Ashley. I worked as a welder until roughly 5 ½ years ago when I was diagnosed with ALS. It all started when I noticed a slight weakness in my hand. I was visiting my doctor about an unrelated issue but when I mentioned my hand, he got concerned and sent me to see a couple of specialists. After a few months, I received my official diagnosis.

Before ALS I was a “indoors” person. Most of my free time was spent playing video games, watching movies, and eating out. At first, that didn’t change much but as my hands got worse, I adapted… I still chuckle wondering what strangers thought of me drinking a beer with a straw in the middle of a pub. Eventually, I couldn’t use a game controller anymore and even using my iPad was a struggle. Then one day I propped my iPad up on the coffee table, leaned back and started using my toes. I started with simple games and tasks but now I do everything like surfing the internet, texting, and playing Minecraft with my kids. Being able to manage my own finances, communicate with people and even order dinner for the family has kept me independent and I believe helps me fight this disease.

I couldn’t do this without my family who helps me to stay positive: my teenage kids laugh at my jokes and really keep me going; my toddler with his endless energy and entertainment; Ashley is my best friend and greatest supporter; my brothers renovated our home for us and always help when needed; my mom who brings positivity and kindness with every visit; my dad who is generous and taught me perseverance through his own journey with health issues.

ALS is a bummer but the support of everyone has amazed me and has definitely provided light on some dark days. There are two groups that have helped make this disease less of a downer. 

The ALS Clinic at South Health Campus is awesome and I’m truly grateful for the team there. The simplicity of having all my medical appointments compressed into one place and one visit every 3 months has saved me unimaginable stress.

The ALS Society is an incredible example of how donations can actually help people in need. They’ve helped me with everything from getting a power chair to helping to pay for my kids' sports through the Support for Champions program. On top of that, they are always checking in to ask how I am and if I need anything. Ever since I was diagnosed, they have been a reliable and important part of my support system.

Making It Possible - Day 4: Pepi McPhee

I was officially diagnosed with ALS in January of 2023. I had seen my family doctor for increased exhaustion, foot drop on both feet and a shaky jaw; a jaw so shaky that my dentist said he has never seen someone’s jaw shake so much, even in his clients who have Parkinson’s Disease.

Being a single mom of three teenage boys is in itself an ongoing challenge. Now, throw in a terminal diagnosis with a rapid progression- there really are no words to describe the new challenges we are facing. No longer able to work, no longer able to drive, needing help from my boys to do things that no child should have to do. This is our new reality.

I have been blessed to have my dear friend, Zen, commute from 3 hours away to care for me during the week. We always had a strong bond, now we are family. I am grateful to have friends and co-workers create a Go Fund Me page to raise money so my boys and I could take a trip.

I wouldn’t exactly call it the trip of a lifetime, but we did the best we could. Packing the car full of equipment - wheelchair, walker, raised toilet seat (very glamorous, I know), speaking with the hotel staff in advance informing them of my additional needs only to get there to find no additional accessibility. These are now the realities of our life. I tried the hot tub, which was great until I couldn’t get out as my legs would not work. We went shopping, but the aisles in the stores were narrow and difficult to fit my wheelchair through. But that is OK. We laughed at the hard moments, we joked about our new routines and we bonded as a family. This is all that matters.

Journeying through this horrible disease has made me and my boys re-evaluate what is truly important in life. We no longer take things for granted. Every time someone leaves the house there is an “I love you” shouted out. We enjoy having movie night two nights each week, two of my boys come home from school every day to have lunch, we now take family trips to Costco because it’s all hands-on deck. These “simple” things in life have become our best days. We laugh, we cry, and we support each other. The memories we have made are priceless.

My family doctor, Dr. Currie, has been a strong advocate for me and my needs. I am thankful to Dr. Johnston and the ALS team at the ALS Clinic for their unwavering support. The research team is truly amazing. The ALS medications I am taking have given me more time.

The ALS Society of Alberta is a gem. The equipment they have loaned gets delivered quickly and makes my days easier and safer. I get excited when I get a call from my Client Services Coordinator, Michelle. Her personable, supportive manner improves my mood and gives me hope. I do not know where I would be today without the Society’s guidance and support.

I do not know how much time I have left. What’s important is how I spend it. My boys are amazing, and I am grateful for the memories we have been able to make. I look forward to the ones still to come. There is nothing greater than the support, vulnerability, humour, and love of my family. They are forever in my heart.

Making It Possible - Day 3: David Stevenson

Our journey began in early 2021, when David experienced a fall at work, resulting in three cracked vertebras. The spinal surgeon assessed the presenting issues of dropped toes and difficulty walking, which were not associated with his back injury. A nerve conduction study in November 2022 determined ALS was the diagnosis. This diagnosis was devastating; we quickly realized we needed to cancel all travel plans and begin to look for activities we could enjoy closer to home.  We began the uphill climb of our mountain. 

Our introduction to The ALS Society and all the ALS support teams occurred during our first appointment at the ALS Clinic. This visit provided both of us with a wealth of information and support. We have relied on the expertise of the Clinic Doctors and staff, the community OT, and the Nurse Practitioner to help us learn about the treatment options and equipment available to assist us as David's abilities change. The equipment and support provided by The ALS Society of Alberta have been extremely helpful; the quick access to large and expensive equipment has allowed us to be able to remain in our family home with limited additional help. This continues to support the outcome David and I are hoping for. 

An ALS diagnosis is devasting, and the journey is an “uphill battle”. However, you do not have to carry the load alone. The ALS Society of Alberta and the ALS Clinic offer support covering everything including medical needs, emotional needs, and equipment needs. This wealth of support is widely available and easily accessible, and the teams are willing to help you carry the load. We are grateful for all the support available and will continue to access these as we need.

Sincerely,

David and Gloria

Making It Possible - Day 2: Donna Aaskow

Like so many who are diagnosed with ALS, Donna’s journey to find out why her legs weren’t working quite like they were supposed to, was not very straightforward. The litany of doctors couldn’t explain her symptoms and what clouded their assessment was that Donna was in a major car accident in January 2021. Eventually she was seen by a neurologist who examined her with fresh eyes. By the time she finally received the diagnosis in April 2022, she had already been living with ALS for a couple of years. It wasn’t the news she wanted to hear, but sometimes you just have to play the cards you’re dealt.

Donna knew that living alone was not going to be in those cards. Her family is hugely supportive, with her daughters Shelly in Texas and Kerri-Rae 30 minutes east of Calgary, but she wasn’t about to burden them. So, when the opportunity for her to move into a new care community in Airdrie came up, she jumped at it. True, it was a move of necessity, but Donna also saw it as an opportunity. She had a new mission. Airdrie Care Community (ACC) was not going be a place where she would be a prisoner counting the days. She would make the most out whatever time she has, wherever she is.

You’d be mistaken if you thought Donna wasn’t tempted to look at her situation and become bitter. She loved her life! Giving up her independence and home was not easy. But she came to see that would be far easier to move forward, embrace these changes and embrace living, than it would be to move backwards and be miserable. With strength from her faith in God, Donna decided to move forward and choose joy.

Despite her resolve, it was still a shock when she moved in. No matter how you sliced it, the reality of her future appeared dim. Depression threatened to overwhelm her joy. This was not going be a simple matter of “don’t worry, be happy.” But then something happened. As she ventured out of her room, wheeling herself around ACC in her cute pink wheelchair provided by the ALS Society, she got to know her new neighbours. As she listened to their stories, compassion for them grew in her heart. Her story wasn’t the only tragedy, or even the worst tragedy. And as that compassion grew, she felt her gratitude return. And with it came joy.

Donna has now lost the ability to wheel around her new home in her snazzy pink wheelchair, so she upgraded to a power chair from the ALS Society. She says that it’s partly because of the support from the ALS Society that she wasn’t afraid to move forward. She knows that as she changes, the Society would be right there to help with the right equipment she needs. She says that when you are first diagnosed you don’t realize the support that’s there for you, but once you experience it, the possibilities open up.

With her power wheelchair comes more freedom and independence. Now you can often find Donna motoring around ACC, greeting staff and residents alike with a smile. She genuinely cares for this community, stopping to ask how their day is going. She listens to their story, then often shares a laugh with them to brighten their day. It just takes a moment, but it’s her mission to share a little of the joy she feels.

Making It Possible - Day 1: Quonset Days

Quonset Days, also known as the ‘Greatest Outdoor Party on Dirt’, is one of the largest fundraisers and community events in Canada. The story is captured by Janet, Trevor and Traci sharing the story of their husband/father, Peter Biemans, and how his honour and legacy led to the formation of the event. Quonset Days has raised over $500,000 to date, with all proceeds directed at The ALS Society of Alberta and our mission to support Albertans affected by ALS.

Thank you to the Biemans Family, and to all those who make Quonset Days that make this fantastic event a reality!