On January 20, 2022, at the age of 49, Jason received the utterly devastating news that his deteriorating speech, muscle weakness and twitching were due to ALS (Amyotrophic Lateral Sclerosis), also known as Lou Gehrig’s Disease. Symptoms began mid-August of 2021 with slurred speech. Not only was Jason handed one of the worst diagnoses imaginable, he has the rarer and more aggressive Bulbar onset form of ALS, which first affects the muscles involved in breathing, speaking and swallowing. People with Bulbar onset ALS experience a faster decline and shorter survival.
Jason is the proud father of two beautiful girls, Peyton (15) and Riveigh (12) and a loving husband to his wife of 17 years, Bobbie. Before diagnosis, Jason was extremely active, playing golf several times a week, coaching his daughters, playing hockey, and running a growing business designing, installing and maintaining Geothermal heating and cooling systems.
As you can imagine, this past year has been incredibly difficult for Jason and his family. Living with ALS means making constant adaptations. Simple tasks become progressively more challenging and eventually become impossible. In a very short time, Jason has lost the ability to talk, hug his girls, drive a vehicle, text on a phone and use a computer keyboard. Gone is his ability to walk, sleep comfortably, brush his teeth, dress and feed himself, shower independently, drink independently, swallow food, adjust in bed and scratch an itch. There is no coming back from these losses. Eventually, ALS will take away Jason’s ability to breathe.
Besides the devastating physical losses, the emotional trauma is equally as extreme. The shattered dreams for the future… of continuing to build his business, then retiring to the lake. The dreams of family vacations, growing old with his wife, watching the girls grow up, seeing them graduate, walking them down the aisle, and dreams of becoming a grandfather - all taken away.
Since June 2022, Jason has been receiving his nutrition through a feeding port. His primary way to communicate is by using a computer with speech-generating eye gaze technology. He uses a wheelchair for mobility. Inside he is still the same person - still a wonderful father, a loving husband, a son, a brother and a friend. We are beyond grateful that his personality and cognitive skills remain unchanged. He still loves a good prank and teasing his girls. His humour, smiles and laughter are inspirational and help to keep the rest of us going. Jason remains positive and looks at each day with his girls, family and friends as a blessing.
Jason was very active in his entire life enjoying running, biking, skiing, golfing and hockey. This past winter, when he returned to watch a hockey game, with a team has played on for the past 17 years, the team surprised Jason by all wearing a crest with Jason’s hockey number eleven stating “F@ck ALS”. They also presented him with his jersey in a shadow box with the ALS crest. His daughter’s baseball team also replicated the crest with the modification to state “ALS Sucks” as stickers the team will wear on their baseball helmets to bring awareness to the disease.
The family tries to keep as normal as routines as possible and with the assistance of the ALS Society Jason is able to remain in his two-story home in the comfort of his family surrounding him. His new electric wheelchair, controlled by his head movements, allows him to watch his girls play sports and activities. Jason has demonstrated great fortitude and perseverance in the face of the suffering caused by this cruel and unrelenting disease. Despite the disabilities and discomfort, Jason continues to live life with passion and purpose. He views each and every day as a gift. He has maintained his focus on quality time with family and friends. Being a present and committed husband and dad is Jason’s greatest joy and with the support of the ALS Society this is a reality. The ALS Society has supported Jason and the family to live the best life possible with ALS.