Glenn Grant first noticed something was wrong in February 2022. During a trip to Wendy’s drive-thru to pick up a lettuce wrapped burger, he couldn’t get the word "lettuce" out properly.
“He came home and he said, ‘I think there’s something wrong,’” said Willy Grant, Glenn’s partner of 27 years. “He was sent to the stroke clinic at the University of Alberta, where he was diagnosed with having had a stroke.”
Willy is Great West Media's director of digital and is based out of the headquarters in St. Albert.
Over the next six months, the couple carried on with their new normal — COVID-19 restrictions were still in place, so Glenn was at home, and while he was slurring some of his words, he was walking and moving about fine.
After his ability to talk got a little worse again, Glenn went back to see his doctor, thinking he'd had a second stroke. After going through some questions with Glenn, his doctor told him, “I don’t think you had a second stroke, and I don’t think you had a stroke six months ago, either.”
Each year, 1,000 Canadians are diagnosed with Amyotrophic Lateral Sclerosis (ALS), a disease that progressively paralyzes people as the brain loses the ability to communicate with the muscles humans rely on to walk, talk, and breathe.
Every person will have a different experience with the early stages of ALS; they may feel weak, have muscle cramping, or find themselves tripping over things more than in the past.
ALS isn’t a disease doctors can test for. Instead, a neurologist will review symptoms and slowly eliminate other possible diseases until there are no other potential causes left. The disease has two classifications: limb-onset ALS starts in the extremities and accounts for between 66 and 80 per cent of cases, and Bulbar-onset ALS, which Glenn was diagnosed with, starts in the head and neck region.
“Many people who have Bulbar onset ALS are misdiagnosed as having a stroke,” Willy Grant said.
There’s no cure for ALS, so Glenn’s diagnosis was grim; 80 per cent of people with ALS die within two to three years.
Despite that, Glenn was determined to leave ALS better than he found it.
“He had one day where he had all the feelings, and the next day he was good. He said he had made his peace with it, and just wanted to live his best life with whatever time he had left,” said Willy.
A world-wide web of connections
Glenn’s determination showed in his dedication to medical research: throughout his journey with ALS, he took part in multiple studies done through the ALS Society, some of which were giving him millions of dollars of drugs a year.
“Those drugs are very expensive, they’re made in smaller batches and they’re not readily available,” said Willy. “We were talking about these drug studies online and we had people who were part of the worldwide ALS community reaching out and asking, 'How do I get that?'
“People were just desperate for some sort of thing to try and improve or lengthen their life a little bit.”
Much of that research is funded by the ALS Society of Alberta (ALSAB), a non-profit that funds research, provides medical equipment to families in need, and supports caregivers throughout the process. Since 2000, the national society has funded 250 projects from coast to coast.
“We’re committed to funding researching that’s happening in Alberta — innovative, important research,” said Leslie Ring Adams, ALSAB’s executive director. “ALS isn’t incurable, it’s underfunded.”
Glenn also set off on a quest to eat at as many of Edmonton’s restaurants as he could before he lost his ability to eat. Because he had bulbar-onset ALS, that day was going to come sooner than it otherwise would have, and he wanted to capitalize on the time he had.
“I reached out to the Edmonton community on social media to ask everyone, where should we go and what should he try? People from all across Alberta and beyond were sending him lists of things he had to try,” said Willy.
“Local restaurants got involved, and they were sending him gift cards, and we would go and he would tweet about where he ate.”
Twitter — and social media as a whole — ended up being an unexpected source of community for the Grants. From Edmontonians chiming in with food tips to the global ALS community, Glenn’s story travelled further than anyone thought it would.
“He wanted to be public about his journey, but he didn’t want to call everyone up and tell them what was going on,” said Willy. “Initially, we were posting on all platforms, but then we discovered the ALS community lives on Twitter."
“Twitter is a cesspool, but its where the community is. A lot of people with ALS are using eye gaze technology to communicate and Glenn was, too.”
The 280-character limit on Twitter is uniquely suited for a population communicating with those technologies, and Glenn found he was able to start a lot of discussions around the disease and what he was experiencing.
“He was on this liquid ALS medication initially that just tasted awful and you would vomit, so he wanted me to take a video of him trying to keep it down. We posted it and it got some ridiculous amount of views and other people with ALS started posting videos of them consuming it, and it became a thing."
“Very quickly, a community built up around us on Twitter.”
The Grants also helped spread awareness of what living with ALS looks like. They didn’t shy away from the realities of Glenn’s illness.
“We’re so grateful for Willy and Glenn, and their courage to share their story because it raised so much awareness about what it’s like to live with ALS,” Adams said.
“To hear Glenn’s story, and what was important to him and to Willy, it championed hope and helped lead the fight against ALS.”
'A little bit of dignity'
Glenn’s ALS continued to progress. His speech deteriorated, and although he was able to talk until the day he died, the ALS sped up, leaving him without any use of his arms and hands. Up until the final week of his life, he was still able to walk, until a bad fall hospitalized him in early November 2024.
“Every time someone with ALS has an injury, or a serious cold or illness, they never fully recover to where they were before. There’s always a new baseline,” said Willy.
Canada’s Medical Assistance in Dying (MAID) is a process that allows people suffering from a serious illness or disability, who are experiencing “unbearable physical or mental suffering,” to opt to end their lives in a more dignified manner.
"It really is important for people who have a terminal illness where they're suffering to have the access to this option, and can choose to end their life with a little bit of dignity and not prolong their suffering," said Willy.
After being hospitalized from the fall, Glenn developed pneumonia and was no longer able to move on his own.
“He asked the doctor, ‘Is this as good as it’s going to get?’ and the doctor told him this is probably your new baseline,” said Willy.
“Glenn just looked at me and said, ‘It’s time to go.’”
With the assistance of a doctor, Glenn passed away at 10 a.m. on Tuesday, Nov. 19. Throughout the process, Willy and Glenn had kept people informed on social media, and after the second mandatory MAID assessment was completed, people started to reach out to ask when it was going to happen.
“People wanted to say a prayer, or light a candle just to let him know that they were thinking about him. That morning, there were thousands of people posting pictures or videos of candles on social media, and that’s when we truly understood how many people became a part of our story.”
The Bankruptcy Disease
ALS is an expensive disease; from home renovations to mobility aids, medications, and medical equipment, costs can quickly mount for families impacted by the condition.
In the days leading up to Glenn’s death, Willy posted about how ALS is also known as the bankruptcy disease. It’s not uncommon for Canadian families to be $250,000 or more in debt by the end. The Grants were “only” around $130,000 in debt, and Willy said she was feeling pretty good about that number, a statement that horrified her friend Tammy Vineberg.
Vineberg started a GoFundMe for Willy, asking for help contributing to funeral expenses and outstanding bills.
“I said, ‘Who’s going to want to make any donation to this?’ I didn’t want to ask for too much money, and I think we started it at $5,000. We were at that mark within an hour, and now it's $49,000.”
The money has gone toward paying off two full credit cards, as well as a line of credit the Grants used to renovate their home. Because ALS can be such a fast-progressing disease, people can go from needing a cane, to a wheelchair, to a power wheelchair within months, and a variety of home mobility aids also add up quickly.
“Eighty per cent of the people who donated money, I don’t even know who they are,” said Willy. “A lot of the people I don’t know have reached out to tell me why they’re donating; they’ve had a family member who had ALS, or a friend, or they’ve been a caregiver. Somehow, our story has resonated with them, and I’m just blown away by all that support.”
