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, Edmonton 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!

Making It Possible - Announcement

The first day of June marks the beginning of ALS Awareness Month: our annual opportunity to inspire empathy and action around this debilitating and irreversible disease. Every year, we take the opportunity to collect personal stories from many members of our tightly-woven ALS community and share them with a wide audience. We do this to give clients and families the platform to highlight the struggles and triumphs of their journey, in the name of care, hope and community. 

Please anticipate these daily stories across our social media feeds, as well as here on our website under the “News” section.

Alberta Apparel's Collaboration with Mikael and Frida Backlund Raises Nearly $20,000 through Crewneck Sweater Sales

Alberta Apparel, in partnership with Mikael Backlund, center for the Calgary Flames, and his wife Frida Backlund, were proud to announce a charitable contribution of $19,500 to the ALS Society of Alberta. The donation comes after the Backlunds designed a crewneck sweater through a special fundraiser in collaboration with Alberta Apparel, where 65 per cent of proceeds from the sale of the sweaters were pledged to support the ALS Society of Alberta.

The ALS Society of Alberta is a charitable organization dedicated to making each day the best possible day for people living with and affected by amyotrophic lateral sclerosis (ALS). By offering support services including the Equipment Loan Program, advocacy, and funding research, the Society strives to make a positive impact in the lives of those living with ALS in Alberta.

The Backlunds have been long-time supporters of the ALS Society of Alberta, raising awareness and demonstrating their commitment to the cause through their partnership with Alberta Apparel, among many other incredible initiatives. In addition to their fundraising, Mikael and Frida host a family every month at a Calgary Flames game, making lasting memories for families dealing with such a devastating disease.

During the official presentation on May 24 at the ALS Society office, Alberta Apparel, Mikael, and Frida Backlund were honored to hand over a donation of $19,500 to the ALS Society of Alberta. The funds will be allocated towards the Society's client support services in Alberta, with a particular focus on the Equipment Loan Program.

The Equipment Loan Program is an essential initiative of the ALS Society of Alberta, providing much-needed equipment free of charge to individuals and families living with and affected by ALS throughout the province. The program ensures that those facing the challenges of ALS have access to specialized equipment that can significantly enhance their quality of life. This includes items such as mobility aids, communication devices, and respiratory support equipment.

"We are incredibly grateful for the overwhelming support we have received from our fans, the community, and Alberta Apparel," said Mikael Backlund. "Through this fundraiser, we aimed to make a difference in the lives of those affected by ALS. The donation to the ALS Society of Alberta will help provide vital resources and support to individuals living with this devastating disease, and we are honored to contribute to such a worthy cause that means so much to us."

The ALS Society of Alberta extends its deepest gratitude to Mikael Backlund, Frida Backlund, and Alberta Apparel for their dedication and commitment to improving the lives of individuals and families impacted by ALS. Their generous donation will make a significant difference in the ALS community in Alberta.

2023 Camrose Walk Together for ALS Ambassador - Lori Huolt

Each year, the Camrose Walk Together for ALS Committee selects an Ambassador to help raise awareness about what it is like to live with ALS. We are proud to introduce Lori Huolt as the 2023 Camrose Walk Together for ALS Ambassador. Read her story below.

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!

2023 Dueling Pianos for ALS

The Drayton Valley Walk Together for ALS Committee is hosting their annual Dueling Pianos for ALS event on Saturday, April 22, 2023. Join in as they welcome Court Jester Dueling Pianos and Sean Sonego back for another night of dueling piano fun in support of a great cause! For those joining from out of town, a block of rooms has been booked at Ramada by Wyndham Drayton Valley. Call 780-514-7861 and mention room block DV WALK FOR ALS to book.

2023 Edmonton Walk Together for ALS Ambassador - Colleen Olson

Each year, the Edmonton Walk Together for ALS Committee selects an Ambassador to help raise awareness about what it is like to live with ALS. We are proud to introduce Colleen Olson as the 2023 Edmonton 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.

2023 Betty's Run for ALS Ambassador - Ralph Scott

Each year, the Betty’s Run for ALS Committee selects an Ambassador, who helps raise awareness about what it is like to live with ALS. We are proud to introduce Ralph Scott as the Ambassador for the 2023 Betty’s Run for ALS!

“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.”

ALS Climb for a Cure

At the end of January, Albertan Chris Clarke, alongside 3 close friends, will climb Mount Kilimanjaro (Africa’s highest summit) in honour of his father, Aussie, who lived with ALS. Aussie resided in Edmonton and was supported by the ALS Society of Alberta, after his diagnosis in July 2021. 

We are honoured that Chris has chosen to donate 50 per cent of funds raised to the ALS Society of Alberta, going toward the Equipment Loan Program and Client Services across the province. With a fundraising goal of $20,000, this contribution is sure to make a significant difference in the lives of those living with and affected by ALS in Alberta.

When speaking of his father, Chris said “our world changed quite a lot. Things moved really quickly. Within the course of a few months of his diagnosis, he had lost the ability to move independently without aides, and then a few months later he had vocal changes and ultimately lost his ability to speak.”

“The ALS Society of Alberta is an incredible community organization that provided my family and others like ours with a support network and vital equipment including wheelchairs and mechanical lifts, free of charge, allowing us to manage Dad’s care at home for as long as was possible. For context, the care and equipment cost of ALS to a family is on average between $150,000 - 250,000,” explained Chris. 

On behalf of the ALS Society of Alberta, we’d like to thank Chris Clarke for his incredible bravery and dedication to the ALS cause. A whopping 19,431 summit, Christopher’s climb of Mount Kilimanjaro will not only raise much needed funds for ALS, but awareness across the community as his story is shared.

We will be sharing updates from Chris’s journey, and we encourage you to follow the ALS Society of Alberta to hear the latest news.