Margot Algie heard about the ALS Ice Bucket Challenge in 2014 through friends and had no idea that only one year later, she would be diagnosed with the disease.

Since then, she has come to understand firsthand the importance of maintaining the momentum of the viral social media phenomenon that resulted in a $21.5M investment in Canadian ALS research. Margot is urging everyone around her to take the plunge and join the fight to end ALS. “Please, please, please take part in the ALS Ice Bucket Challenge,” she says. “It’s time to put another huge chunk of money towards research so we can find new drugs that can hold ALS at bay. We have to stop this disease from killing us.”

Despite the challenges Margot faces on a daily basis, she is the kind of person who always pushes through. “I won’t give up and say ‘woe is me,’” she says. “I just keep finding ways to overcome or compensate, whether it’s using an app to help me type, or adapting to my motorized wheelchair that was provided by the ALS Canada Equipment Loan Program.”

It’s hard to accept that everything happens at a “snail’s pace” these days, but patience is one of the qualities Margot is drawing on to settle in to her new routine. “Once you’ve got one new thing down pat, it seems there’s some other hurdle you have to adapt to just around the corner,” she says, “but I am more patient with others now, and more patient with myself. I’ll give you an example: instead of raising my voice in frustration and perhaps uttering choice expletives, I’ll take a deep breath, smile and say bring it on.”

When Margot was diagnosed with ALS, her colleagues at ICE (Integrated Communications and Entertainment) organized their own challenge by throwing a big “Bucket List” fundraising event for Margot. The goal was to raise enough money to check off as many of her own personal bucket list items before the effects of the disease progressed. Because everyone progresses through ALS differently and there’s no way to know the course it will take, time was of the essence.

“The best part about the event was the chance to reconnect with people I hadn’t seen in more than a decade,” says Margot. She is also tremendously grateful for the overwhelming show of love and support and overjoyed by the chance to tick off many items on her list, including her number one wish, to see Van Morrison perform live at a dinner theatre in Ireland. “There was a huge sense of community that really turned my thinking around. It gave me a reason to keep living with the time I have left,” she recalls.

Margot at 2019 ALS Research Forum
Margot at the 2019 ALS Canada Research Forum.

Time is often on Margot’s mind. “I dwell in the short term,” she says. “I think about what I have to do today and how much time it will take to do.” Waking up each day brings new challenges that are harder and harder to overcome. She responds by trying to cherish each moment. “I am literally stopping to smell the roses,” she says, “hoping I can reach out and pull the branch towards my nose so I can take in the scent.”

Sadly, some bucket items are no longer within reach. Margot has always loved dogs. She owns a boisterous 13-month old English Setter, Charlotte. Though her wheelchair gives her the independence to accompany her partner, Roger, on their dog walks, she can’t control Charlotte on the leash on her own anymore. Even hugging her puppy is difficult. “If I could, I would have gobbled her up and cuddled with her while she was growing up, but instead I try just to pat her,” explains Margot. “By the time I get my hand near her she moves and I can’t do it because my motions are so very slow.”

“This is the start of a new chapter, perhaps even a new book,” Margot says in a moment of reflection. Her resilience and determination to make the most of each day help her accept the fact that she can no longer work or get out of the city on weekends like she used to. Receiving support has helped, including equipment from the ALS Canada Equipment Loan Program that would have been difficult to purchase on her own. In turn, Margot is giving back to the community by fundraising for the Walk to End ALS and facilitating ALS support groups at the Sunnybrook ALS Clinic in Toronto.

There is no time to waste. ALS is devastating the lives of 3,000 Canadians and their families every year.

It’s about time we added “end ALS” to the bucket list – take action today. Your generous support will help provide community-based support services for people and families living with ALS in Ontario; it will contribute to funding research and to federal and provincial advocacy initiatives within Ontario.

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