Stephanie Thompson of Ottawa was in her early 40s when she began noticing the first signs of amyotrophic lateral sclerosis (ALS). The now 44-year-old was experiencing “weird muscle cramps” that would occur seemingly out of nowhere.
“It’s normal to get cramps in your feet, and I had those too, so I didn’t think much of it,” she said in an interview with Yahoo Canada. “But then I’d be brushing my hair and my hand would seize up, clamping around the brush so tightly I had to pry my fingers loose.”
The cramping worsened over time to the point that she recalled not being able to lift her head from her pillow. Still, it would be two years before Thompson felt they were serious enough to see a doctor.
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“My three boys — 15, 13, and 6 — took up a lot of time, and there was always something going on,” she explained. “I kept putting [my health] on the back burner. But then I had this feeling — it can’t be normal because it lasted too long.”
Stephanie Thompson’s ALS diagnosis was relatively quick compared to many people in Canada. (Image via Stephanie Thompson)
In September 2023, two years after she first began noticing symptoms, the cramps had progressed to the point where Thompson needed to brace herself to stand up. Her doctor referred her to a specialist for an Electromyography (EMG), a procedure that measures muscle and nerve function.
“My first EMG and physical exam showed weakness, but I didn’t get the results then,” Thompson said.
Thompson was referred to a neurologist in December 2023 for more tests and a second EMG; a month later, she received an MRI. February brought more tests and another EMG. Five months after she visited her doctor for her symptoms she received the devastating diagnosis: she had ALS.
“I went to a very dark place where I couldn’t function…,” she said. “You think about your life, even just the day before the diagnosis, and you start grieving the future you thought you’d have. It’s like, that’s not going to happen now.”
Despite the heartbreak of learning she has ALS, Thompson acknowledged that she received her diagnosis relatively quickly.
Dr. Lorne Zinman, head of Sunnybrook Hospital’s ALS Clinic in Toronto agreed.
Most family doctors will encounter only one or two ALS cases in their entire career
“In Canada, it typically takes patients one and a half to two years from their first symptom to receive a diagnosis,” he explained in a separate interview with Yahoo Canada.
One reason for the delayed diagnosis is that ALS has no “diagnostic biomarkers” and a diagnosis is made “ruling out every other possibility.
Adding to the challenge is the disease’s rarity. ALS affects only two to three people per 100,000 annually, and there’s a lack of awareness among general practitioners.
“Most family doctors will encounter only one or two ALS cases in their entire career,” says Zinman. “Stroke, by comparison, is far more common.”
ALS, also known as Lou Gehrig’s disease, is a progressive neurodegenerative disorder. It destroys the nerve cells that control muscles, severely impairing speech, swallowing, movement, and eventually breathing. Unfortunately, today, there is no cure. Approximately 3,000 people in Canada are diagnosed with ALS each year; one thousand Canadians die annually from the disease.
The life expectancy for people with ALS varies, however Health Canada reports that 80 per cent of people die two to five years after their diagnosis.
“For reasons we don’t fully understand, yet, the nerves controlling muscles begin to degenerate,” said Zinman. “In most patients, the disease starts in one region of the body. If it begins with speech or swallowing, it’s called bulbar-onset ALS; if it starts in the arms or legs, it’s known as spinal-onset ALS.”
The ‘bankruptcy disease’
Living with ALS comes with a huge financial burden, something that Thompson and her fiancé Devin Duquette, have learned first-hand. They purchased a home in July 2023, seven months before Thompson received her diagnosis.
“Unfortunately, we did not get insurance on the mortgage. That was a financial hit for us because we have to maintain that mortgage throughout this process,” explained Thompson. In addition, the new home required upgrades such as the chair lift to help keep her as mobile as possible.
Stephanie’s fiancée, Devin, has taken on the role caregiver following her ALS diagnosis. (Image courtesy of Stephanie Thompson)
Since the pandemic, Thompson had been working remotely for a corporate bank. Although the job wasn’t physically demanding, she ultimately had to stop working.
“I came to the point where the physical requirement to even be at a desk for that long was something that I couldn’t do,” she said. “Because of the continuous typing, I’ll cramp up my hands. And then there was the stress of work and [after the diagnosis] the stress of [learning that] I’m dying.”
Despite the public health care system and provincial home care programs that offer some support, coverage is inconsistent across Canada. Families must grapple with the expensive treatments and out-of-pocket costs of medicines and specialized equipment that could provide comfort and care.
The ALS Society of Canada says the average financial burden a household incurs with a member living with ALS between $150,000 and $250,000 over the course of the disease. It’s considered the “bankruptcy disease” because the yearly cost of ALS care is much higher than that for people living with HIV/AIDS, stroke survivors in their first year, or those with Alzheimer’s.
With a reduced income, keeping up with everything is challenging
Although Thompson received help from the ALS Society of Canada, she and Duquette turned to GoFundMe to help raise money for bedroom equipment
“With a reduced income, keeping up with everything is challenging. The ALS Society of Canada provides some devices and equipment, but you don’t have a say in what you receive. For example, I had to pay out of pocket for specific bathroom equipment,” she said.
As per the ALS Society of Canada, the direct costs associated with ALS (including medical expenses, mobility aids, home modifications, and specialized services) on average add up to $32,337 per year, with families paying about 61 per cent of that — approximately $19,574 — out of pocket. Indirect costs, which are a result of loss of job or unpaid caregiving responsibility are an approximately an additional $56,821 annually.
Private insurance has been crucial in covering ALS-related expenses.
“Critical illness insurance helped with some costs, and the Assistive Devices Program will partially cover a specialized electric chair— which costs as much as a car— but I’ll have to cover the rest,” she said.
Thompson has also turned to social media for support. In addition to her GoFundMe page, she has an Amazon wish list that includes items like a hydration system for people with limited mobility and a hand splint to help straighten her fingers.
“I’m grateful to social media for connecting me with the community. If someone wants to help but can’t donate directly, an Amazon wish list with a $30 item could be a way. I’m happy with whatever works for them,” said Thompson.
‘ALS needs to be in the forefront’
Social media is not only a way for Thompson to connect with the community but also raise awareness for ALS. She’s documenting her ALS journey on Instagram through her handle ALS Gets On My Nerves.
The guilt of this is something that I’m still working through. I’m proud how of Devin and my kids have adapted into our new normal.
“This happened [to me] for a reason and I’m going to make the most of it to spread awareness because there’s never enough awareness,” she said.
Stephanie and Devin plan on getting married this year. (Image courtesy of Stephanie Thompson)
Amid the chaos, Thompson and Duquette got engaged on Dec 31, 2021.
“The future we thought we would have isn’t there. To pivot and to become one of my caregivers has been inspiring to me. He has to carry the household plus take care of me,” she says. “His workload has increased substantially and he does it out of love. It’s not the future that I thought we would be having. But I can’t control it. The guilt of this is something that I’m still working through. I’m proud how of Devin and my kids have adapted into our new normal.
“We had a few detours and side quests along the way but are planning on getting married this year. Creating memories and finding our own joy and happiness throughout this journey is our primary objective.”
Click here to visit Stephanie Thompson’s GoFundMe.
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