On the last day of ALS Awareness month, we are grateful to have Adam Thom, a filmmaker, tell his family’s ALS story.
This honest and raw video shares his feelings and experience of losing his father to ALS at a young age.
Thank you Adam, for sharing this with all of us.
My name is Trevor Bradshaw and I am proud to be called the Ambassador for the Red Deer Walk for ALS for 2021.
I was diagnosed with ALS in July 2019, but looking back, the symptoms presented themselves much earlier. I was riding my beloved Triumph motorcycle when a deer hit me. My left leg became numb. Thinking it was a result of the accident and hard work my back had endured over the years, we thought it was a pinched nerve. Then my energy level and physical strength became very weak. I couldn’t accomplish what I used o during a work day. It took one more year before my diagnosis through the ALS Clinic in Calgary. I was 62 years old.
I was a heavy duty mechanic with Finning for 14 years then started a construction company and gravel pit. The work was very physical but I enjoyed it immensely. Customers became lifelong friends. After the diagnosis, I began selling off equipment and focused on spending time with my family and friends.
Before COVID, I got to travel to Arizona, doing a motorcycle trip with friends. Took my family to Nova Scotia and an incredible trip to Iceland. Exploring Banff, Jasper and Cypress Hills has also allowed family time. But just enjoying coffee or happy hour with friends and family is equally important to me.
I have met this illness with a sense of humour, courage and determination. Having the support of the ALS Society and Clinic has been exceptional. You only have to mention an issue, and it is quickly resolved. They have installed lifts in our home and various medical equipment which will allow me to stay in our home longer.
With this support, I have been able to spend my energy on living life to the fullest and what means the most to me. Please support this worthwhile cause to help end ALS.
My ALS limb onset diagnosis came in June 2019. Symptoms started in the early spring of 2018. During my regular gym exercising my weightlifting protocol was subtly becoming more difficult, particularly exercises involving my legs. In the early summer of 2018 while speed walking on the gym track, suddenly my right foot was not working properly. Continuing that exercise in the normal fashion was not possible. At the time I blamed it on my new shoes.
During the course of 2018 balance issues became a problem and my right leg was not allowing me to walk normally. It became difficult using stairs and to stand up without leaning against a wall or using handrails.
We lived in a two storey house and decided to move to a bungalow. The move was made in September 2019.
As things progressed my family doctor did not have a diagnosis. She referred me to a neurologist. In January 2019 the neurologist performed nerve conduction tests, the results of which were normal. She arranged for an MRI which was done in May 2019. By this time my ability to walk needed a cane. More testing was done and then referral to the Kaye Clinic was made. My appointment was in June 2019. More nerve conduction testing was done and the result was the diagnosis of ALS. This was the beginning of my relationship with the neurologist and the Kaye Clinic. It was also at this point information about the ALS society was given to me. My registration with the society happened in July.
My wife and I have six grandchildren, two in Fort McMurray, two in Grande Prairie, and two in Saskatoon. It really goes without saying what our passion is, but we love our grandchildren. In order to see our grandchildren on a regular basis we traveled a lot, but that is what we liked to do. Also another passion of ours was visiting the Temple Garden Spa in Moose Jaw, Sask every year, twice a year .
My other passion was my work. My love of airplanes had me working at the airport of a diamond mine in the NWT. My primary role was directing aircraft landing at and taking off from the airport. Sometimes it could get busy because getting in and out the mine could only be done by air. There are no roads.
My diagnosis resulted in my last tour of duty at the mine in 2019. Our last visits to see our grandchildren, and visit to the Spa, were in the early winter of 2020. By this time climbing stairs and long drives were a challenge because of a lack of energy and poor mobility. Now our grandchildren visit us, unfortunately hampered by Covid, but they do the travelling now.
My new passion is playing scrabble on facebook with my mom, my sisters, my brother, sister-in-law, and other friends. Another passion is Facetime with my grandchildren when they are not visiting.
My wife has become my primary caregiver. Her role has become progressively more work. My oldest son initially moved to Edmonton to provide assistance. My three other sons are very supportive and as time has gone on they visit regularly to help out. My brother built a wheel chair ramp in my garage which now allows me to get out of the house because using stairs is not a possibility any more.
Support from the ALS Society has been phenomenal. The support provided has been beyond my expectations. They are always willing to discuss my issues and always ready to help resolve my issues. They have provided every piece of equipment needed to help me live my best. Wheelchair is my exclusive method of mobility now. The ALS society arranged for ceiling lift tracks installed in my living room, bathroom, and bedroom in order to get in and out of the wheelchair.
Another important thing they do is contact me regularly to see how I’m doing and offer more help if it’s needed. It has been outstanding service provided by outstanding and caring people. Something very special about them is the coordination of `coffee group’ meetings on zoom. This has allowed me to make contact with other people with the same condition. This is a positive aspect for my life and my deepest and sincerest thanks go out to the society.
Support also comes from AHS, AADL, and the Kaye Clinic. In early 2020 breathing while lying on my back was a challenge. The clinic arranged for me to get a BiPAP. The Kaye Clinic also stays in contact with me and offer any help if needed.
My own research into ALS led me to join two facebook groups, Whole body healing for ALS and ALS Natural Healing (Holistic) and an international online organization, HealingALS.org. This research also led me to develop a treatment plan. This plan includes a supplement protocol involving numerous supplements, a program involving acupuncture, physiotherapy, massage therapy, iv therapy, removing mercury fillings from my teeth and removing teeth that had root canals.
There is no way of knowing for sure if any of the plan has helped but it worth trying at least until the medical community, with their now exhaustive research around the world, can find a cure. Riluzole was part of my treatment plan for a year but uncomfortable side effects forced me to stop.
At the beginning of my diagnosis I was involved in a drug trial. The drug was pimozide.
My plan for the future is to never give up! My attitude is positive and I surround myself with positive people. Stress reduction is very important as well as elimination of anger.
I recently received this quote from a friend of mine. It is so appropriate.
“Our greatest weakness lies in giving up. The most certain way to succeed is always to try just one more time.” – Thomas Edison
Living With ALS - Pam’s Story – A Digital Story by Mike Lang
Pam Keenan, new ALS Society of Alberta Board Member, shares the story of her husband Chad’s ALS journey all through the eyes of our talented friend, Mike Lang.
”Mike has worked with hundreds of patients, family members and health care providers, from across all injury and illness groups, to help them create short 3 min Digital Stories of their experiences.”
Please take a moment to watch to Pam’s Story. Her family’s raw and honest story is one that will move you in so many ways. Thank you, Pam, for sharing it.
#MIP #MakingItPossible
"They" say that if life gives you lemons, make lemonade. Sometimes life has felt like I have been required to make lemonade, lemon chiffon pie, lemon pound cake, lemon squares ... When the diagnosis of ALS was received, it felt as if a lemon landslide had occurred and I had run out of inventive ideas to deal with the problem and frankly, I was sick of lemons. Unfortunately, the lemons had landed and there was no alternative but to accept the situation and know that there would be more lemons to deal with in the future. As a single mother and sole proprietor, having always done things by my own handiwork, I thought I might have to deal with this all on my own
and the thought was daunting.
But as I stepped back from the thoughts that this was all bad, I did become aware that you can rely on others in your "universe" who would lend a hand, even if it was only to help consume some of the lemonade, lemon pies, lemon cakes etc.
They could even suggest more uses for lemons or come play with you in the lemons. Who thought it possible? The truth is, that it does take a village to help navigate all the channels that come with any difficult diagnosis because we do not have all the answers or recipes ourselves.
My stitching has always been a meditative process for me and I wished to try to give back in some way to the Society who has been there to help. I have found as this particular project has progressed, that I have more helpers out there than even I have appreciated and I hope upon its completion their generosity will have been properly honoured and that whomsoever takes ownership of the project will see that it takes many to make it work for all of us. Afterall, could
you imagine a world without lemons? Think of the bland seafood, the boring desserts and the unrefreshed atmosphere ...
- Sylvia
Sylvia has graciously started her own very successful fundraiser for the ALS Society of Alberta, “It Takes A Village”. So far she has raised just under $9000 (and counting…)
Here’s how it works:
Visit : https://secure.e2rm.com/registrant/startup.aspx?eventid=349736
For a donation of $250 + you can choose one of the options and have your name/initials or company name/initials added into the art piece
Choose a building/structure from “Sylvia’s List”
All donations, no matter the amount are accepted (and Sylvia is VERY thankful)
There’s only a few spots left! Once the piece is finished, we will be auctioning off the art. All proceeds will go to the ALS Society of Alberta to help families living with or affected by ALS right here in Alberta.
My mom, Gail Rauw, was diagnosed with ALS in July of 2018. She (“Nana”) had 6 beautiful grandchildren, whom she cherished. One of her granddaughters (my daughter), Ariella, was inspired to make a difference by raising both awareness and money for the ALS society. For Ariella’s 6th birthday (March 2019), she asked for donations in place of birthday gifts and raised over $630. For Ariella’s 8th birthday (March of this year), she once again asked for donations, and celebrated with a virtual painting party with friends (her Nana was a talented painter). Sadly, her Nana passed away that day. Ariella continued her advocacy mission, and reached out to the ALS society to support her endeavour. They quickly provided books, balloons, and bracelets, which Ariella brought to her class and distributed. She also started an “ALS club” for any classmates who wanted to know more about ALS. Ariella’s love for her Nana shines bright in many aspects of her life, and she is motivated to spread awareness of ALS.
My mom was an absolutely amazing grandma, mother, wife and friend. We miss her tremendously. We are so grateful for the support we received from the ALS society throughout her illness, as well as the support we continue to receive.
Belle DeZutter – A Digital Story by Mike Lang
Build Community. Discover Wisdom. Inspire Change.
The 2021 Edmonton Walk To End ALS Ambassador let's us in on how her ALS story began, how she has dealt with the diagnosis, and her life since, all through the eyes of our talented friend, Mike Lang.
”Mike has worked with hundreds of patients, family members and health care providers, from across all injury and illness groups, to help them create short 3 min Digital Stories of their experiences.”
Please take a moment to watch to Belle’s Story.
#MIP #MakingItPossible
https://youtu.be/b9hGoFnwZBA
One of our lovely clients, Christine, was able to be a part of a beautiful community in Stony Plain, Alberta. This community, Southpark Cove, truly embraced Christine during her illness by surrounding her with positivity, fun and comfort.
Recently, our dear friend Christine passed away. The staff of Southpark Cove immediately reached out to us, looking for a way to honour her life. Staff, tenets, family and friends all came together to raise money for the ALS Society of Alberta in her memory, but that wasn’t all. They asked the Society to create a framed memorial piece for the entertainment room of their complex, the same room Christine spent so many days enjoying the company of everyone at Southpark Cove.
Christy was able to visit Southpark Cove just last week to accept the donation and drop off the new memorial.
Thank you Southpark Cove for providing such a positive environment and for being a wonderful group of friends.
Growing up with my brother, Chad, was a great adventure. He would push the limits on activities, make anyone smile with his goofy humor or be a shoulder to cry on. He had a heart of gold and would make lasting memories with anyone he met.
My parents would joke that on holidays the first thing we needed to do was find out where the nearest hospital was. There was always a good chance we would be spending time there due to Chad’s love of exploration and how “clumsy” he was.
As we grew older, Chad was my biggest fan. Being 8 years apart, he was my support system, a true “big brother” (especially being 6’4”) and was always there to make me smile or calm my nerves during uncertain times. In 2017 my husband, Chris, and I took a risk and decided to open our own business, Devil’s Head Coffee Roasters Ltd. Chad and his wife Pam were always there for us to test ideas with; problem solve and were interested and supportive in our new venture, even though he did not like coffee.
When Chad shared his ALS diagnosis to us, it was a shock. I still remember the day sitting on my couch in 2018 and listening to the news while holding my young son. Chad was strong, but I could see he was still processing the news himself. But in typical Chad fashion he made us smile, laugh, and promise to live life to the fullest with him. We agreed to be adventurous, make every moment count and spend as much time together as we could. We made lasting memories that I will always remember. Chad will continue to inspire me throughout my life to always find the joy, even during difficult times.
Me and My ALS
My first inkling that something was wrong was in the fall of 2018. My voice had become gravelly and I seemed to constantly have phlegm in my mouth and throat. Then in the winter I began to limp slightly although I had no pain. I called my family doctor who suspected I might have suffered a slight stroke. So I went to the emergency department at Foothills; they quickly ruled out stroke and called in a neurologist. Right away, I knew. Of course the neurologists are very careful before issuing a diagnosis – they finally did so in August – but I knew.
Since then, my disease has followed the predictable path: as I write this in April of 2021, I have completely lost the ability to speak. I can drag myself a few steps with the help of a walker, but I have fallen a few times. I have trouble chewing and swallowing my food. My breathing and my upper body functions have so far been only slightly affected, but of course I realize it's a matter of when, not if, these too will fail me.
Reading this, you might think that I am miserable. In fact I'm not. I am 75 years old, and I have carried the ALS gene all my life, without knowing. For many people with this gene, the disease manifests itself at a much younger age. If my fairy godmother had said to me when I was 50 “Buddy, I'm sorry but you have ALS. But, you know what, I'll give you another 25 years so you can see your children grow up and establish their own families and careers, so you can enjoy your grandchildren,so you can travel the world with your wife who you love so much, so you can find enjoyment and recognition in all aspects of your life, how about it?” I would have gratefully accepted!
I am actually lucky that the covid restrictions have coincided with my illness: I can participate in the meetings of my fraternal organization and I can play duplicate bridge with my friends because these happen online. If there were no covid, I would be cut off from these activities.
My condition has been immeasurably alleviated by the support of my wife Meredith, my children Nycole and Roland and my granddaughters Jillian and Jessica. I would be remiss if I didn't especially thank the ALS Society of Alberta and the Alberta Home Care program. They have both been amazing, not only supplying me with things like a wheelchair, a walker, a transfer bench, an iPad with the “Predictable” program and many other aids, but doing so in a friendly and unbureaucratic manner – they never let me feel like I'm imposing, although I must be!
One photograph shows Meredith, me, Mikael Backlund, Roland and his partner Allison at a Flames game. I am very grateful to Mikael for making this possible,we had a great time. The other has me on Beechey Island in Nunavut, a stopover on our cruise through the Northwest Passage, which had always been a dream of mine.
In 2007, Ken Renton from Kidco Construction responded to the need for support of families in Alberta affected by ALS. Mr. Renton immediately got behind Betty’s Run for ALS.
Every year since then, the Renton family has quietly supported the cause in addition to many charities. They have given more than $150,000 to support families living with ALS and fund much needed research here in Alberta.
Even after Mr. Renton retired, his daughter Danielle continued to support the cause and participate in the Run. They invite their entire staff to participate on the day of Betty’s Run.
The Renton family represent what community is about in Calgary. Giving back to the community has always been Kidco’s philosophy.
Thank you to Kidco for making is possible for Albertans affected by ALS.
Today for our Making it Possible series, we would like to recognize the dedicated members of the ALS Society of Alberta Board of Directors.
Thank you to the ALS Society of Alberta Board of Directors, for leading the Society to provide the best possible supports for our families across Alberta and fund ground-breaking ALS research.
Our incredible leaders, Nancy Lyzaniwski, Cathy Martin, Gord Banting, Tara Pentney, Heather Haddow, Jim Robinson, Kimberly Howard and Pamela Keenan.
This incredible group of leaders led our Society through the last year, dealing with a pandemic that shook the world. Their constant and unwavering support was there to ensure we continued to make each day the best possible day for our families affected by ALS. All having been personally touched by ALS, their commitment to the cause is unwavering.
We are so thankful for their service – in the words of Margaret Mead…
Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has.
Bernie Ward was diagnosed with Kennedy’s Disease in 2006, after noticing changes in his speech. The ALS Society and the support groups have been a great support for Bernie, especially during Covid with the move to virtual meetings, allowing him to participate more regularly. Bernie has shared his Making it Possible story via video, please watch it here.
Wayne Erickson was diagnosed with ALS in 2012. During his diagnosis Wayne was known to share his personal experiences with those around him, teaching students and care staff about ALS and the needs of an ALS patient. He was the kind of person who always wanted to help, he was always able to be open and honest about his situation and his needs, making things very easy for Wayne’s caregivers to help him. If you asked any of the caretakers that worked with Wayne over the years to describe him, you would hear the same sentiment, “never grumpy, always the first to offer a solution”.
Wayne was a gifted artist, and photography is what he loved to do. If you were to take a look around the home of Wayne and his wife (Norma Erickson), you would see an array of beautiful wildlife photography, proudly framed and displayed on the walls for everyone to enjoy. One photo in particular, the snowy owl, became a bit of a symbol for Wayne and for the ALS Society of Alberta. The snowy owl represents freedom and flying high, something our families can surely relate too.
Norma, is also an artist and dedicated to her work. Norma has been quilting for over 35 years and has been making beautiful quilts for the WALKS to End ALS since 2015. In 2019 after hours and hours of hard work, the Eagle quilt was born, this amazing quilt was inspired by Wayne. Norma continues to keep Wayne’s legacy alive with her love of quilting. Each year, she creates a beautiful new piece for us during event season, to raise money for people living with and affected by ALS. Earlier this month, we were lucky enough to raffle off not just one, but TWO of Norma’s beautiful creations, aptly named, “The Twins”.
My name is Edana Gust. When I was diagnosed with ALS on April 1, 2019, I told the doctor that it was April Fool’s Day and I was hoping he was joking. He assured me it was no joke. My husband Doug and I were just numb from the diagnosis. I’ll provide a little background on how we arrived at the diagnosis. A year or so earlier, I had noticed some discomfort with my right knee, and we started a process to find out what was happening. The consensus was that it was osteoarthritis, but nothing seemed to be helping and my mobility and balance were beginning to suffer. In December 2018, my voice changed and there was concern that perhaps I had suffered a stroke. All the tests for heart conditions came back negative so I was referred to a neurologist. After a CT scan and MRI, I was scheduled for an EMG on April 1 and the diagnosis of ALS was made.
The next month can be described as a grieving process where we wrestled with the reality of the diagnosis and came to grips with what the future might hold for us. Life is a journey, we don’t get to pick what’s placed in path, but we can choose how respond to the unexpected. Fortunately I didn’t have to wait long until I was able to attend my first ALS Clinic where I was able to meet the amazing resources dedicated to supporting those living with ALS. I met Michelle with the ALS Society shortly thereafter Rob came for a visit.
We were living in a two-story house and owned a bungalow style condominium that we had as a rental property. We began plans to renovate the condo and make it “wheelchair accessible”. What a blessing to eliminate stairs and have everything on one level! The ALS society provided a porch lift, a scooter, and a walker, so I had my mobility back!
My speech continued to deteriorate, and I met the speech therapist with ACETS to began learning the fine points on use of speech devices. I now have my speech device and know how to teach it my favorite phrases.
I have been blessed with incredible support from friends and family and we keep in touch through zoom and “socially distanced” visits. I am thankful that I can continue to knit and crochet. In 2020, I set a goal of knitting 20+ sets of toques and scarves for my brother to give as Christmas gifts. I started them in July and completed them by September. I then began a quest to complete an afghan for each of my nieces and nephews. The first 20 were complete in time for Christmas. The next twelve are now complete. In the midst of the afghan project, I did 7 baby blankets for the new additions to the family, and 40 preemie hats.
I am grateful for the ALS Society and the support they continue to provide. It was wonderful to be asked to share my story.
Stephen and Sharon
One morning in November 2019 we were having coffee in bed and Stephen did not feel up to going to a retiree’s luncheon so I found a picture of a puppy that was available and we agreed to drive to Red Deer and interview this pup. Little did we know this was the onset of Stephen’s ALS and the beginning of a love affair with little Patch. Although Stephen’s breathing continued to deteriorate finally resulting in an ICU admission December 26 and eventual diagnosis of respiratory onset ALS in March 2020 Patch provided such joy to our lives. Stephen smiled more than in our previous 35 years of marriage. Since then, the ALS Clinic and the ALS Society, and in particular, Michelle, have provided such unwavering positivity and support. Of course COVID has impacted everyone but it terrified us with Stephen’s difficulty breathing. The ALS Society providing Stephen with a motorized scooter enabled him to go on walks with Patch and I. This way we were able to still greet neighbours and enjoy the outdoors. Since then, we have been incredibly grateful for all of the various assistive aids provided by the ALS Society that have enabled Stephen to continue living at home. We have also found lots of pleasure in reading the Louise Penny Inspector Gamashe series aloud. It is delightful to be reading a series located in Canada by such an extraordinary author.
This is an incredibly exciting day, as we celebrate the life and legacy of Adam Rombough with this amazing new partnership with Sea Change Brewing Co. in Edmonton. The family and friends of Adam Rombough continue to Make Things Possible, with a new partnership that coincides with ALS Awareness Month. Prime Minister Justin Trudeau concurs, including his thoughts below.
June 10th - Sea Change Brewing Co. has partnered with the ALS Society of Alberta to raise awareness and funds for Amyotrophic Lateral Sclerosis (ALS), in memory of Edmonton community member, Adam Rombough.
After being diagnosed with ALS in 2017, Rombough dedicated his final 14 months to fundraising and generating awareness for the disease, before passing away on May 8th, 2018 at the age of 34. Throughout his battle with ALS, Rombough maintained his larger-than-life attitude, and can be remembered saying “I’m not dying slowly, I’m living quickly.”
To carry on his legacy, and continue advocating for ALS, Sea Change Brewing Co. has crafted their new Adam’s Pale Ale, which was released today, June 10th. For every four-pack sold, the brewery will donate $1 to the ALS Society of Alberta. The brewery is challenging everyone to post a photo or video of themselves cracking open the Adam’s Pale Ale, and to use the hashtag #OneOnAdam to spread awareness.
“June is ALS awareness month, a time to reflect on and reaffirm our support for those individuals who have been diagnosed with this disease,” said Canada’s Prime Minister, Justin Trudeau in a letter stating his support for the campaign. “This important campaign is named in honour of Adam Rombough who died from ALS. His fight with the disease and kindness towards others serves as an inspiration to our nation. Through Adam’s legacy, we are able to come together and support those with ALS while honouring his life.”
In addition to the Prime Minister, keep an eye on our social media channels today for other notable community members that have indicated their support and will be using the social media hashtag #OneonAdam.
Adam’s Pale Ale can be purchased at select liquor stores across Alberta.
Learn more on our website at alsab.ca/seachange!
“Adam was one of my oldest and closest friends. His optimism and zest for life was completely infectious. The fact ALS can strike anyone – regardless of who they are, and there is no way to prolong their life once it does, is really scary. I know Adam would be absolutely amazed that his face is on a beer can, I don’t think he’d quite believe it. Through this partnership, we’re encouraging people to have #OneOnAdam and to help spread awareness of this awful disease.” - Kris Andreychuk
“When Kris came to us with the idea for this partnership, there was no hesitation. Adam was such a huge part of the Edmonton community, and touched so many lives, this is the least we could do. We crafted the Adam’s Pale Ale truly with Adam in mind. It’s super flavourful and approachable – just like him. We hope to make a difference in the search for a cure for ALS – every little bit counts.” - Pete Nguyen, Sea Change Brewery
“We were lucky enough to meet Adam in 2017, and in the short time we knew him, he certainly left his big heart in those he touched. His legacy continues to live on with the Adam’s Pale Ale fundraising campaign, and we are so appreciative of the support of Kris Andreychuk, and Pete Nguyen of Sea Change Brewing Co., and all of Adam’s family and friends for making this a reality. We hope “Adam’s Pale Ale” provides a reminder of how Adam lived life to the fullest, and helps make your day a memorable one. “ - Karen Caughey, ALS Society of Alberta Executive Director
My personal journey began on March 14, 2019. I had just returned home from a lovely trip to New Orleans for Mardi Gras. I had an appointment booked with my neurologist the next day. I was still in holiday mode and on top of the world. As we did my tests I was excited to shares stories about my vacation and a new granddaughter. Life was good.
Then I received the news... you have ALS. At first, I was numb then I realized this was my new reality. As I shared my news with family and friends I felt a strong feeling of love and support. "This is now going to knock me down without a fight," I thought. I am going to live life to the fullest every day.
At first, I was having slurred speech and losing the use of my right hand. Today 2 1/2 years later, I have now lost my speech and have weakened arms and legs. My determination keeps me going. I was fortunate to be selected 1 year ago to participate in a promising clinical study that reduces progression by up to 33%. I believe I can beat the odds of the 2 to 5-year life expectancy.
I am so blessed to have a wonderful family. My husband of 34 years is by my side, his love and support are unbelievable, the kind of love every girl dreams of. My two grown sons and daughter-in-laws are in constant contact with me or see me every day and always followed by "I love you". They always make me laugh so hard I cry. Then there are my 2 granddaughters. My favorite words are "I want to go to Gamma's house", they are my everything...
My friends are always there for me, texting to check up on me or just to send me their love. Sooo... that is why my life is good even as I battle this horrible disease. As most of you know there is no cure or ALS at this time as we continue to raise awareness and help fundraise research for this very underfunded disease, I hope one day we find the cure we so desperately need.
My Motto is and always will be to stay strong, stay positive and never ever take anything for granted.
We are all blessed.
In 2015, in my early 40’s, while running with a friend, I noticed weakness in my left foot. Over the next months and years after the weakness continued to progress and after several misdiagnoses, I was given the life-changing diagnosis in 2017 that I had Amyotrophic Lateral Sclerosis (aka ‘ALS’, Motor Neuron Disease or Lou Gehrig’s Disease).
After the initial shock, me and my wife Joanna, have been proactive in fighting this illness and remaining strong. Towards the end of 2017, we flew to Japan and spent five weeks receiving Radicava infusions and continued on with the treatment when I returned home for nearly two years. I also participated in a voluntary clinical study for Pimozide and also another for Reldesemtiv. While down in California, I also donated my blood for another clinical study so that the researchers could check for any biomarkers that may lead them to future findings for other ALS patients. Obviously, as are many ALS patients, I am interested in new research. Nurown and AMX-0035, for instance, have indicated initial interesting findings in their Phase 3 clinical studies.
With the support and prompting of several friends and colleagues, I have chosen to leave a legacy by writing a book to document my journey with ALS. I feel there is an opportunity to not only raise awareness of, and funds to fight, this horrible disease but also provide a bit of humor and hope for people to help them live their best lives as they face their own struggles in life. I knew going into this project, I would not be looking to make money, so at least 70% of the proceeds are going directly to the ALS Society of Alberta. The remaining 30% will simply cover publishing and printing costs. It is called: "PERSPECTIVES: 17 Things I Learned About Living Your Best Life While Battling a Terminal Illness" https://www.amazon.com/dp/0228845505
The ALS Society of Alberta has been fantastic to me and my wife. For every dollar that they raise, 60% goes directly to ALS patients and their families for much-needed equipment and the remaining 40% goes to the National ALS Society for research that is used to help find effective therapies and hopefully a cure that will benefit all ALS Fighters around the world. They have supported us with equipment as we needed it and in addition, all the people that work there have been an amazing emotional support to us as well.
In summary, 2020 was a difficult year for the world. As an ALS patient, we often feel isolated already due to our disability. When there is a global pandemic, many of us were trapped inside for over a year away from our friends and loved ones and many still are. After I was diagnosed my wife and I made the decision to purchase a second home in Palm Desert, California. We made that decision so that we could escape the snow, ice and cold that is a big part of Calgary's winters and with Covid-19 we were even more grateful. Last year in the fall, we flew down for the second year in a row and enjoyed warmer temperatures where I could get out and experience vitamin D. Our plan, assuming my health continues to hold up, would be for us to head down again later in this year and spend another few months in warmth (and sea level which helps my weakened breathing). This not only gives us something to look forward to, but also provides us a good mental health experience as we continue to make memories and live a life of gratitude.
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 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 to 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 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 this summer, with the help of
the ALS Society of ALberta, they have created the “Walk with Kari to End ALS”
fundraiser where we can 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.
