She was diagnosed with ALS in her 40s. Here's what she wants you to know about “bankruptcy”

Stephanie Thompson of Ottawa began to notice the first signs of amyotrophic lateral sclerosis (ALS) in his 40s. The 44-year-old is experiencing “weird muscle spasms” that seem to be everywhere.

“It's normal to get cramps on your feet, and I have that, so I didn't think too much about it,” she said in an interview. Yahoo, Canada. “But then I would brush my hair, my hands would grab it, clamp it tightly on the brush, and I had to pry my fingers open.”

As time passed, the spasticity worsened, so much so that she recalled that she could not lift her head off the pillow. However, Thompson believes they have been serious enough to see the doctor for two years.

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“My three boys (15, 13 and 6) take up a lot of time and something always happens,” she explained. “I've been saying it all the time.” [my health] On the rear burner. But then I felt this way – it wasn't normal because it lasted for too long. ”

In September 2023, two years after she first began to notice symptoms, the cramps developed to the point where Thompson needed to support herself. Her doctor referred her to an expert on electromyography (EMG), which measures muscle and neurological function.

“My first EMG and physical examination showed weakness, but I hadn't gotten results at that time,” 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 her symptoms of visiting her doctor, she received a devastating diagnosis: she had ALS.

“I went to a very dark place that couldn't work …” she said. “You think about your life, even if it was just the day before the diagnosis, and start to feel sad about the future you think you have. Like, it won't happen now.”

Despite learning ALS, Thompson knew her diagnosis was relatively fast.

Dr. Lorne Zinman, head of the ALS clinic at Sunnybrook Hospital in Toronto, agreed.

“In Canada, it is usually necessary for patients to start diagnosed from the first symptom for half to two years,” he explained in another interview. Yahoo, Canada.

One reason for delaying diagnosis is that ALS does not have a “diagnostic biomarker” and that the diagnosis is “excluded in all other possibilities”.

The challenge is the rarity of this disease. ALS affects only two to three people per 100,000 per year and is lacking in awareness among GPs.

“Most family doctors will only experience one or two ALS cases throughout their careers,” Zinman said. “Strokes are more common by comparison.”

ALS, also known as Lou Gehrig disease, is a progressive neurodegenerative disease. It destroys nerve cells that control muscles, severely damages speech, swallowing, exercising and eventually breathing. Unfortunately, today, it cannot be cured. About 3,000 people in Canada are diagnosed with ALS each year; a thousand Canadians die from the disease each year.

Life expectancy for ALS patients varies, but Health Canada reports that 80% of people who die two to five years after diagnosis die.

“Because we don't fully understand yet, the nerves that control muscles begin to degenerate,” Zinman said. “In most patients, the disease begins in an area of ​​the body. If it starts with a speech or swallowing, it is called ALS with bulb attacks; if it starts with an arm or leg, it is called ALS with spinal attacks.”

“Bankruptcy Disease”

Living with ALS brings a huge financial burden, and Thompson and her fiancé Devin Duquette have learned it personally. They purchased a home in July 2023, seven months after Thompson diagnosed it.

“Unfortunately, we didn't get insurance on the mortgage. It was a financial blow to us because we had to keep the mortgage throughout the process.” In addition, new homes need upgrades, such as chair lifts, to help her stay as mobile as possible.

Thompson has been working remotely for corporate banks since the pandemic. Although the job was not a physical requirement, she eventually had to stop working.

“I came to the physical requirement of something I couldn't do,” she said. “I got cramps due to continuous typing. Then there was the pressure of work, [after the diagnosis] pressure [learning that] I'm going to die. ”

Despite some support from the public health system and provincial home care programs, coverage remains inconsistent across Canada. Families must struggle with out-of-pocket expenses of expensive treatments and dedicated equipment that can provide comfort and care.

The Canadian ALS Association says that during the course of the disease, the average financial burden of the family is caused by the family, with one member living between $150,000 and $250,000 in ALS. It is considered a “bankruptcy” because the annual cost of ALS care is much higher than that of HIV/AIDS, stroke survivors, or people with Alzheimer's.

Although Thompson received help from the Canadian ALS Association, she and Duquette turned to Gofundme to help raise funds for bedroom equipment

She said: “With the revenue drop, it’s in line with everything. The Canadian ALS Association offers some equipment and equipment, but you don’t have a say in what you’re receiving.

According to the average direct costs of the Canadian ALS Association (including medical expenses, mobility aids, home modifications and professional services), it totals up to $32,337 per year, with about 61% of the costs (about $19,574). Overhead is the result of work losses or unpaid care liability, about an additional $56,821 per year.

Private insurance is essential to paying ALS-related fees.

“Critical illness insurance helps to cover some of the costs, and the auxiliary equipment plan will partially cover professional electric chairs (as much as a car), but I have to take on the rest of the electric chairs,” she said.

Thompson also sought support from social media. In addition to her GoFundMe page, she also has an Amazon wishlist that includes projects like hydration systems for limited mobility and handmade splints to help straighten your fingers.

“I thank social media for connecting me to the community. If someone wants to help but can't donate directly, a Amazon wishlist with $30 might be a way to go. I'm happy with everything they're working for them.”

“ALS needs to be at the forefront”

Not only is social media a way for Thompson to connect with the community, but it also raises awareness about ALS. She was recording her ALS journey on Instagram via the handle ALS, which made me feel upset.

“This happened [to me] For some reason, I will make the most of it to spread consciousness, because there is never enough consciousness. ” she said.

In the chaos, Thompson and Duquet got engaged on December 31, 2021.

“We think we will not exist in the future. To be pivoting and being one of my caregivers, he has been inspiring me. He has to carry family plus my care.” “He has increased his workload a lot and he did it out of love. It's not the future I think we will have. But I can't control it. I'm still working within the gui. I'm proud that Devin and my kids have adapted to our new normal.”

“Along the way we have some detours and side tasks, but plan to get married this year. Creating memories and finding our own happiness and happiness throughout the journey is our main goal.”

Click here to visit Stephanie Thompson's Gofundme.

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