Archive for the ‘Stories’ Category

As a former business analyst, James is accustomed to planning for the future. He has lived with ALS officially since 2013, but his doctors believe he has had ALS for over 20 years. James has an exceptionally slow progression of the disease, which has given him time to do what he does best: plan for […]

When Shelley first started to notice a change in her gait, she had no idea that an ALS diagnosis was on the horizon. In fact, up until her neurologist confirmed the diagnosis in early 2016, Shelley didn’t even know what ALS was. For many people and families living with ALS, the diagnosis can come as […]

As the month of June wraps up, so too does ALS Awareness Month. Over the past several weeks, ALS Canada has invited you to #SeizeTodayALS by telling us how you have chosen to find joy and laughter in every day, despite the challenges of living with ALS. We have been privileged to share the stories […]

A week before the annual WALK for ALS in his community, Susan Peacock’s husband, Jeff, spent a few hours on his computer composing a message to post on Facebook using eye gaze software. The technology allows him to communicate now that he can no longer speak, but, as Susan is quick to point out, it […]

Like most couples, Denis and Tom had dreams for their future together. They met 25 years ago in Philadelphia, and when Denis accepted a new position in Toronto, Tom quit his job and moved to a foreign city to be with him. Tom found a job in his field, became a Canadian in 2000 and […]

Husband. Partner. Lifelong friend. Grace had known Randy since he was a teenager, and over time he had become all of these things to her. The couple had been married for almost 50 years before Randy passed away from ALS in March 2016, and Grace recounts that they had built “a beautiful life” together in […]

When Fabio talks about his grandmother Giuseppina, the love and respect he has for her is unmistakable. The woman he describes is warm, fun-spirited and hard-working; a woman who would do anything for the ones she loves. As the eldest of eight grandchildren, Fabio shared a unique bond with Giuseppina, who passed away earlier this […]

From a very young age, my grandfather and I had a special connection. I remember as a young girl, he and my grandmother would go to Portugal for six months at a time. When they returned, I refused to leave his side and would spend hours just staring up at him, thinking how lucky I […]

The only muscles Jeff can fully control are behind his eyes. He lives with ALS, but that hasn’t stopped him from staying fully engaged in life and finding purpose in helping others. That’s the way he’s always been, says his wife, Darlene, who has known him since high school. Nowadays, everything takes extra time, but […]

If you were to have asked Kimberley a couple years ago the definition of Amyotrophic Lateral Sclerosis, she would have admitted that she did not know. Medically speaking, the word “lateral” identifies the area where nerve cells in the spinal cord that nourish the muscles are located. As nerve cells die, the muscles receive no […]

When life hands you an ALS diagnosis, the fear of the unknown can often prevent you from embracing the present. This is something Mary-Anne experienced first-hand three years ago, when she was diagnosed with ALS. During a vacation in Puerto Vallarta, Mexico in 2012, on her way to a yoga class, Mary-Anne tripped and fell […]

When Eddy was diagnosed with ALS in 1992, he was given three to five years to live. His symptoms began with a weakness in his left hand that gradually progressed throughout his body. “Over the next 15 months I was unable to skate, run the length of a squash court without falling, and was constantly […]

Judy is the kind of woman who can make you smile in any situation. With a zest for life, unwavering positivity and a witty sense of humour, Judy is an inspiration for what it means to seize today. At first glance, you wouldn’t know that Judy has ALS. At the age of 64, she is […]

Diagnosed with ALS in September 2013 at the age of 41, Carol has surpassed the two to three year life expectancy that was originally given to her by her neurologist. Since then, she has struggled with degenerating muscle function every day – but she refuses to let that stop her. When she first received her […]

Last month, John Scarborough and his two brothers completed their “Long Walk Home.” The 459km walk was a way to honour their sister and John’s first wife who both died of cancer, and to remember Rita, John’s second wife who died with ALS a year ago. The brothers set out in Toronto from the home […]

In his lifetime, Jamie has climbed the Swiss Alps, bungee jumped, skydived, white water rafted and cave climbed. He has gone on a balloon ride in Estonia, taken a cruise to the Caribbean, done a rainforest canopy tour in St. Lucia and proposed to his best friend. Since his ALS diagnosis in 2016, he has […]

Oftentimes, significant life struggles – like an ALS diagnosis – bring about a reassessment and shift in perspective. For Don, living with ALS means readjusting his physical goals, but his attitude about life is the same as it has always been. He calls it “PMA” (positive mental attitude), a term that embodies Don’s optimism. Don […]

Tim was always actively engaged in life. He loved his work, coaching and playing hockey, riding his bike, and spending time with his circle of family and friends. ALS took away his ability to move. It forced him to make huge adjustments but living with the disease never changed the way he approached life. Just […]

Receiving an ALS diagnosis is overwhelming, and many people and families living with the disease will tell you its realities are devastating. ALS can take away your mobility, your ability to speak and laugh, your strength and your ability to eat and drink. What it cannot take away is the relationships, love and personal connections […]