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In her early 40s, Stephanie Thompson from Ottawa began to notice unusual symptoms that would later lead to her diagnosis of amyotrophic lateral sclerosis (ALS). The 44-year-old recalled experiencing unexpected “weird muscle cramps” that started affecting her daily activities.
“Cramps in your feet are common, so I didn’t think much of it at first,” she shared in a conversation with Yahoo Canada. “However, when I found myself unable to loosen my grip on the hairbrush while brushing my hair, that was a clear signal something was wrong.”
Over time, her symptoms intensified, culminating in moments when she could hardly lift her head from her pillow. It took her two years before she decided to seek medical advice, primarily due to the demands of raising her three sons, aged 15, 13, and 6. “I had a busy life, and I kept delaying my healthcare,” she explained. “Eventually, I felt that this wasn’t just normal discomfort; it was too persistent.”
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By September 2023, her symptoms had escalated significantly, and her doctor suggested that she undergo an Electromyography (EMG) to assess her muscle and nerve function.
“The initial EMG and physical examination indicated weakness, but I didn’t receive any results at that time,” said Thompson. In December, she was referred to a neurologist who ordered additional tests, including a second EMG and an MRI. After several months of assessments, she was ultimately diagnosed with ALS.
“When I received my diagnosis, I went to a very dark place,” Thompson recounted. “You start mourning the future you envisioned for yourself. It’s a realization that everything you thought would be is now altered.”
Thompson recognized that she had a comparatively fast diagnosis, as many people with ALS experience much longer waits. Dr. Lorne Zinman, head of Sunnybrook Hospital’s ALS Clinic in Toronto, noted the challenges in diagnosing the disease, pointing out that it often takes between one and two years from symptom onset to diagnosis. This delay can be attributed to the absence of specific diagnostic markers for ALS, requiring physicians to eliminate other conditions first.
“ALS impacts about two to three people per 100,000 annually, making it a rare condition that many general practitioners rarely encounter,” stated Zinman. “In contrast, conditions like stroke are far more prevalent.”
ALS, commonly referred to as Lou Gehrig’s disease, is a progressive neurodegenerative disease that progressively damages the nerve cells controlling muscle function, eventually impacting speech, swallowing, movement, and respiration. Currently, no cure exists. Each year, around 3,000 individuals receive an ALS diagnosis in Canada, and the disease results in approximately one thousand deaths annually.
The prognosis for individuals diagnosed with ALS varies greatly, however, Health Canada indicates that around 80 percent of those diagnosed with ALS pass away two to five years following their diagnosis.
“The precise cause of ALS remains unclear, but we know that nerve cells that govern muscle function deteriorate,” said Zinman. “The disease usually begins in a specific region; for instance, if the initial symptoms involve speech or swallowing difficulties, it is classified as bulbar-onset ALS, while onset in the arms or legs is termed spinal-onset ALS.”
The Financial Impact: A ‘Bankruptcy Disease’
Navigating life with ALS comes with significant financial strain, which Thompson and her fiancé, Devin Duquette, have experienced firsthand. In July 2023, just months before her diagnosis, they purchased a new home.
“Regrettably, we didn’t secure mortgage insurance, which has hit us financially as we try to handle ongoing mortgage payments in this challenging situation,” Thompson explained. Additionally, they had to make modifications to their home, such as installing a chair lift to facilitate her mobility.
Prior to her diagnosis, Thompson worked remotely for a corporate bank. However, she was ultimately unable to continue due to her physical limitations. “I couldn’t manage the physical demands of sitting at a desk, particularly with the typing required,” she stated. “That, combined with the new layer of stress post-diagnosis, became overwhelming.”
Despite Canada’s public healthcare system and associated home care services, the support provided is inconsistent. Families often face exorbitant healthcare expenses along with out-of-pocket costs for necessary treatments and equipment.
The ALS Society of Canada estimates that the financial cost for families living with ALS ranges between $150,000 and $250,000 throughout the progression of the disease. This condition is often referred to as the “bankruptcy disease,” as the annual expenses for ALS care are substantially greater than that of individuals living with HIV/AIDS, stroke survivors, or even those with Alzheimer’s.
Managing Financial Difficulties Amid Reduced Income
After receiving aid from the ALS Society of Canada, Thompson and Duquette established a GoFundMe campaign to help raise funds for essential home modifications.
“With our income reduced, keeping up with our expenses has proven difficult. While the ALS Society provides certain devices, recipients have no choice in the items provided,” she said, highlighting that she had to finance additional bathroom equipment out of pocket.
According to the ALS Society of Canada, direct costs related to ALS typically average around $32,337 each year, with families often covering approximately 61% of that, leading to about $19,574 in out-of-pocket expenses. Additional indirect costs from job loss or caregiving responsibilities can add another estimated $56,821 annually.
Thompson noted that private insurance has played a vital role in managing her ALS-related expenses.
“Critical illness insurance has helped alleviate some financial pressure, and while the Assistive Devices Program covers part of the costs for specialized equipment like an electric chair—sometimes as expensive as a car—there’s still a significant out-of-pocket amount that I must manage,” she elaborated.
Social media has also provided Thompson a platform for connecting with others in similar situations. Along with her fundraising efforts, she maintains an Amazon wish list that features items beneficial for her condition, including a hydration system for those with limited mobility and a hand splint to assist with finger mobility.
“I appreciate social media for connecting me with others in this community. If someone wants to assist but can’t contribute financially, they can still support me through my Amazon wish list, where even a $30 item can make a difference. I’m grateful for any support they can offer,” Thompson stated.
Raising Awareness for ALS
Thompson uses social media not only for community-building but also to amplify understanding and awareness about ALS. She shares her experiences on her Instagram page, ALS Gets On My Nerves.
The guilt I feel about this situation is a journey I am still navigating. However, I am proud of how Devin and our children have adapted to our new reality.
“I believe there’s a purpose behind what has happened to me. I want to utilize my journey to spread the word; there is never enough awareness regarding this disease,” she expressed.
Amidst the trials, Thompson and Duquette became engaged on December 31, 2021.
“The future we anticipated has shifted. Devin has taken on a dual role, becoming my caregiver while also juggling household responsibilities. His dedication inspires me; he supports me out of love. While this is not the life we envisioned, I accept that I cannot control everything. I continue to grapple with the guilt attached to this situation. Nonetheless, I am proud of Devin and the kids for how they have embraced our new way of life.”
“While we’ve encountered unexpected detours, we are determined to marry this year. Our focus now is on creating joyful memories together and finding happiness as we navigate this journey.”
To support Thompson’s journey, visit Stephanie Thompson’s GoFundMe page.
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