Walk to End ALS set for June 7 at Assiniboine Park
A local woman is sharing her story in an effort to raise awareness about ALS.
ALS, or amyotrophic lateral sclerosis, is a disease that progressively paralyzes people because the brain is no longer able to communicate with the muscles of the body.
Over time, the brain’s connection with the muscles of the body break down to the point that someone living with ALS will lose the ability to walk, talk, eat, swallow and eventually breathe.
In Canada, nearly 4,000 people live with ALS, also known as Lou Gehrig’s Disease. Sandy Lefley of Grosse Isle is one of them.
“When I think back, it started in 2011 with just a minor breathing issue. I have exercised for many years and knew something was off. So over the years, I went through some tests and it was said I had acid reflux or anxiety. So I went with that,” 66-year-old Lefley shared via email.
“Then in June of 2022, all of a sudden I started slurring my words. It was very minor and periodic at the time. Then I started having trouble swallowing and would sometimes choke when I ate or drank. I got in to see a neurologist and he came to the conclusion that it was stress or anxiety also or an adult stutter.”
In May 2024, Lefley went to the Mayo Clinic in Minneapolis seeking more information.
“We spent a week there going through numerous tests. The hard part is ALS isn’t diagnosed in CT scans or MRIs. It is a process of elimination. I was tested for many other things and everything came back negative,” said Lefley, who led a healthy lifestyle with exercise and diet.
“And the breathing part I described was not my lungs or heart. It is the muscles around it that are not functioning properly. So in the end, that left ALS. Mine is predominately the bulbar ALS. My type of ALS is not genetic. I do have some minor symptoms in my body but nothing major yet.”
Since 2022, Lefley’s ability to speak has gradually declined.
“Now it is to the point where no one understands what I am saying, so I have an app which I can type in what I want to say and it says it out loud. Or I just type something in my phone and show them. As you can imagine, it is hard to get a word in edgewise,” she said.
“If I am with a group of people, the conversation moves so fast — by the time I type something, it is too late. Being with one or two people, it is more manageable. And the swallowing part, I am now restricted to eating and drinking certain foods or using my feeding tube. It is very difficult to go out for supper or eat at someone else’s house because of my restrictions.”
Although Lefley is dealing with many changes and challenges, she remains grateful for all the resources available in Manitoba.
“We do have wonderful resources for people living with ALS. There is an ALS clinic at Deer Lodge that specifically monitors ALS patients. They really take good care of you and help you with what you need to do to live with this disease. You have a whole team at your side,” she said.
“There is also the ALS Society, which you can go to for things you might need free of charge. I also have a feeding tube and there is the Manitoba Home Nutrition Program that takes good care of your journey. You get all the supplies and formula you need from them for your feeding and delivered to your door at no extra cost.”
At the same time, Lefley embraces some wise words shared with her more than once: Just live your life.
With that in mind, she will be participating in the Walk to End ALS with friends and family on Saturday, June 7 at Assiniboine Park in Winnipeg.
“I had been thinking about going in the walk but never did anything about it. But my daughter Sarah brought it up to me. She said she was putting in a team. She got the ball rolling. It’s like anything — until it affects you, you don’t pay much attention to it. I’m so glad she decided to,” she said.
“I am on a medication to slow the disease down but, of course, I would like to see more money go towards research so that maybe the next generation can have a cure.”
Her daughter Sarah also participated in the ALS Ice Bucket Challenge, which involves pouring a bucket of ice water over a person’s head to raise awareness and support.
“It has gone through countless friends and relatives over the last couple of weeks and is still going strong. I am so humbled by the participation — it is very overwhelming. I am so lucky to have so many friends and relatives I know I can count on with this path that was chosen for me,” she said.
“And, of course, my husband Chuck, my daughter Sarah, her husband Chris and my two grandchildren Kit and Wren have all been a huge support for me.”
“Sandy’s Team” is currently collecting online pledges for the Walk to End ALS at https://alscanadawalktoendals.als.ca/manitoba2025/sandys-team. Cheques are also accepted.
And all are welcome to join Lefley and her team for the Walk to End ALS, which takes place on Saturday, June 7 at Assiniboine Park, 55 Pavilion Cres. Registration is at 8:30 a.m. and the five-kilometre walk starts at 10 a.m. There is plenty of parking on site, washrooms are available and snacks will be provided for participants.
Looking ahead, the ALS Society will hold another fundraiser on Thursday, June 19 at a Goldeyes game in Blue Cross Park.
Learn more about the Walk to End ALS and An Evening with the Goldeyes events at alsmb.ca.
