“ALS is not for the weak of heart,” says Martha Williams whose husband, Scott, has been living with a slow-progressing form of ALS since 2015. The symptoms may be slow-moving compared to the rapid decline some ALS patients experience, but looking back over the past year, Scott says, “it’s still too fast for us.”

Last year, he went from using a walker to needing a wheelchair full-time. Now the disease is moving to his hands. “It’s upsetting to have to rely so much on others when I’ve always been the one to help out. I haven’t worked since 2017 because I started losing the ability to work independently and had to relinquish physical tasks to others,” says Scott. “I’m so grateful for the support of family and friends. A couple of months ago I could still transfer to my scooter. Once I became wheelchair-bound, I was limited in how I could leave the house. Now with the rear accessible entrance my family built, along with the lift donated by a family affected by ALS, I have gained some independence to get outside on my own. It’s hard not being able to participate in some of the every day things. I can’t even change a light bulb anymore.”

Scott admits to dark times, but he says his innate sense of humour helps him and those around him stay positive. “I can still look at the funny side of things,” he explains. “There’s no sense dwelling on stuff you can’t change.” Thinking about the family pet, an adorable 4-year-old Sheepadoodle named Brinley, he says “the good thing about ALS is that I don’t have to pick up dog poo in the back yard anymore!”

On a more serious note, Scott and Martha are frustrated with the lack of action on the part of the government to make good on a promise made in 2017. Motion 105 saw members of the House of Commons give their unanimous approval to increase support for ALS research to find a cure. “It’s about time for the government to be a leader,” says Martha. “What are they waiting for?” she asks. “We’ve see high-profile Canadians like MP Mauril Bélanger die of ALS back in 2016, but nothing has changed since then.”

Even when new drugs like edaravone are approved by Health Canada, Martha says uncertainty right now about whether or not health insurance will cover treatments can create further delays and frustration for families living with ALS. “When you’re only

Scott played his tuba for 4 years, but had to stop playing this September due to lack of arm and finger strength.

given two to five years to live,” she says, “the situation is dire. For ALS patients, the clock continues to tick, and time will run out.” Even with a slow-progressing form of ALS, the disease trajectory is unpredictable, and symptoms can suddenly accelerate. The bottom line is, nothing can be done to reverse the decline.

In response to the challenges they face, the Williams have decided to rally behind the cause. Scott and Martha, along with their two

daughters, Colleen and Melanie, have been heavily involved in ALS Canada’s signature fundraising event, the Walk to End ALS in Peterborough. “We’re not a public family. I never wanted to be a poster child for ALS, but if we don’t step up, who will? It’s about time we stopped accepting the status quo,” says Scott. The Walk to End ALS provides a chance to connect with members of the larger community and bring awareness of the disease to individuals who may not know a lot about ALS. People who attend the Walk can witness first-hand how the disease affects lives and, according to Martha, that can have an important ripple effect in terms of understanding and engagement.

As the end of the year approaches and families begin to plan for the holidays, the Williams are more grateful than ever that they continue to have a strong bond as a couple, with their daughters, and extended family. “Five years ago, we loved to celebrate Christmas in the country at my parents’ place,” recalls Martha. “After turkey dinner, Scott would strap on his skates and join everyone on the frozen pond outside or go for a long walk with the dog.”  This time, for the second year in a row, the large family of 30 or more relatives will come to the Williams’ small bungalow in Port Hope instead because of the mobility challenges Scott now faces. “We’ll make it work somehow,” says Scott.

“You try to keep things as normal as possible,” explains Scott. “The holiday tradition may be different again this year, but it’s still me. I’m still here.”

Family photo at my niece’s wedding, August 2019 Colleen and boyfriend Kyle Venema, Scott, Martha, Melanie and her boyfriend Devon Matthews.
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