Stephanie Thompson from Ottawa was in her early 40s when she started to notice the first signs of Amyotrophe lateral sclerosis (ALS). The now 44-year-old experienced “weird muscle cramps” that would apparently prevent from nowhere.
“It is normal to get cramps in your feet, and I had it, so I didn't think much,” she said in an interview with Yahoo Canada. “But then I would brush my hair and my hand would grab, so firmly clamps around the brush that I had to pry my fingers loose.”
The cramps deteriorated over time to the point that she remembered that she couldn't lift her head out of her pillow. Yet it would take two years before Thompson had the feeling that they were serious enough to see a doctor.
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“My three boys – 15, 13 and 6 – took a lot of time, and there was always something wrong,” she explained. 'I just kept putting [my health] On the back burner. But then I had this feeling – it can't be normal because it took too long. “
The as -diagnosis of Stephanie Thompson was relatively fast compared to many people in Canada. (Image via Stephanie Thompson)
In September 2023, two years after she first started noticing the symptoms, the cramps had improved to the point at which Thompson had to scrap itself to get 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 examination showed weakness, but then I didn't get the results,” said Thompson.
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 got the devastating diagnosis: she had like.
“I went to a very dark place where I couldn't function …” she said. “You think of your life, even the day before the diagnosis, and you start to mourn the future you thought you would have. It's like, that is not going to happen now.”
Despite the heartache of learning, she has ALS, recognized Thompson that she got her diagnosis relatively fast.
Dr. Lorne Zinman, head of the Sunnybrook Hospital in Toronto as clinic, agreed.
Most family doctors will only come across one or two in their entire career
“In Canada, patients usually cost one and a half to two years after their first symptom to get a diagnosis,” he explained in a separate interview with Yahoo Canada.
One reason for the delayed diagnosis is that if no “diagnostic biomarkers” has and a diagnosis is made “exclude any other option.
Adding the challenge is the rarity of the disease. As only two to three people per 100,000 a year, and there is a lack of consciousness among general practitioners.
“Most family doctors will only encounter one or two in their entire career,” says Zinman. “Stroke is much more common in comparison.”
If, also known as Lou Gehrig's disease, is a progressive neurodegenerative disorder. It destroys the nerve cells that control muscles, speech, swallowing, movement and ultimately breathing. Unfortunately there is no remedy today. Every year around 3,000 people are diagnosed in Canada with ALS; A thousand Canadians die every year from the disease.
The life expectancy for people with ALS varies, but Health Canada reports that 80 percent of people die two to five years after their diagnosis.
“For reasons that we do not fully understand, the nerves that check muscles begin to degenerate,” said Zinman. “In most patients, the disease starts in an area of the body. When it starts with speech or swallowing, the bulbbar is called; when it starts in the arms or legs, it is known as a spinal start.”
The 'bankruptcy disease'
Living with ALS with a huge financial burden, something that Thompson and her fiancé Devin Duquette have learned first -hand. They bought a house in July 2023, seven months before Thompson got her diagnosis.
“Unfortunately we did not receive insurance on the mortgage. That was a financial hit for us because we had to maintain that mortgage during this process,” Thompson explained. In addition, the new house required upgrades such as the Stoellift to keep it as mobile as possible.
Stephanie's fiancée, Devin, took on the role of caregiver after her as a diagnosis. (Image thanks to Stephanie Thompson)
Since the Pandemie, Thompson had worked remotely for a company bank. Although the job was not physically demanding, she eventually had to stop working.
“I came across the physical requirement to be on a desk for so long, something I couldn't do,” she said. “Because of the constant types I will cramp my hands. And then there was the stress of work and [after the diagnosis] The stress of [learning that] I die. “
Despite the public health care system and provincial home care programs that offer some support, coverage is not consistent in Canada. Families must struggle with the expensive treatments and cash costs of medicines and specialized equipment that can offer comfort and care.
The as Society of Canada says that the average financial burden that a household in the course of the disease with a member with ALS with as between $ 150,000 and $ 250,000 is increasing. It is considered the “bankruptcy disease” because the annual costs of ALS -Zorg are much higher than those living with HIV/AIDS, survivors of strokes in their first year, or with Alzheimer's.
With a reduced income, keeping everything a challenge is a challenge
Although Thompson received help from the as Society of Canada, they turned and duquette as a goofundme to raise money for bedroom equipment
“With a reduced income, keeping everything a challenge is a challenge. As a Society of Canada offers some devices and equipment, but you have no voice in what you receive. For example, I had to pay for specific bathroom equipment from your own pocket,” she said.
According to the as Society of Canada, the direct costs in connection with if (including medical costs, mobility aids, home modifications and specialized services) increase on average to $ 32,337 per year, with families who pay around 61 percent of them – about $ 19,574 – out of the pocket. Indirect costs that are the result of loss of job or unpaid healthcare responsibility are approximately an extra $ 56,821 per year.
Private insurance has been crucial when covering ALS-related costs.
“Critical health insurance has 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 will have to cover the rest,” she said.
Thompson has also used to social media for support. In addition to her GoFundMe page, she has an Amazon desire with items such as a hydration system for people with limited mobility and a hand splint to straighten her fingers.
“I am grateful to social media for connecting with the community. If someone wants to help, but cannot donate immediately, an Amazon long -term list with an item of $ 30 can be a way. I am happy with what works for them,” Thompson said.
'If must be in the foreground'
Social media are not only a way for Thompson to make contact with the community, but also to increase consciousness. She documents her as a journey on Instagram through her handle that gets on my nerves.
The debt of this is something that I still work through. I am proud of Devin and my children have adapted to our new normal.
“This happened [to me] For a reason and I will make the best of spreading consciousness because there is never enough consciousness, “she said.
Stephanie and Devin are planning to get married this year. (Image thanks to Stephanie Thompson)
In the middle of the chaos, Thompson and Duquette were engaged on December 31, 2021.
“The future we thought we would not have had. To turn and one of my carers is inspiring for me. He has to wear the household plus and take care of me,” she says. “His workload has increased considerably and he does it out of love. It is not the future I thought we would have. But I can't have control over it. The fault of this is something that I still work. I am proud of how Devin and my children have adapted to our new standard.
“On the way we had a few detours and side -quests, but are planning to get married this year. Creating memories and finding our own joy and happiness during this trip is our primary goal.”
Click here to visit Stephanie Thompson's Gofundme.
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