I was living with ALS symptoms for years before I was diagnosed in my 40s. The signs you shouldn't ignore — and the reality of living with a terminal illness
May is ALS Awareness Month — an important cause to Stephanie Thompson. The Ottawa-based mom 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.
This article is for informational purposes only and is not a substitute for professional medical advice, diagnosis or treatment. Contact a qualified medical professional before engaging in any physical activity, or making any changes to your diet, medication or lifestyle.
'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.'
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 careerDr. Lorne Zinman
'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.
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'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.'
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.
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 challengingStephanie Thompson
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.
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A post shared by Stephanie Thompson (@alsgetsonmynerves)
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.
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.Stephanie Thompson
'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.
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.'

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Pros Almond milk contains omega-3 fatty acids that are important for heart health, as well as the antioxidant It's naturally low in sugar. It's a fairly versatile and accessible option that's available in a variety of flavors. Cons Despite almonds themselves being a nutritious whole food with protein and fat, almond milk is not considered a source of protein, Terry says. This is because almonds are stripped of many of their nutrients during the "milking" process. If you're looking to replace calcium-rich dairy milk with almond milk, you'll want to ensure you're getting calcium in your diet from other foods. Check the label for additives and gums Oat milk Olivia Geyelin With its creamy consistency, oat milk is an optimal dairy milk substitute in baked goods, soups, lattes and more. This plant-based milk has more carbohydrates than other options, Terry says, which makes for a good pre- or post-workout drink. 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Cashew milk Getty Images This is a "versatile plant-based option with a creamy texture," according to Terry, and its price is on par with almond milk. It's also available in most grocery stores. Cashew milk has a nuttier taste than most plant-based milks and it's rather sweet. If you prefer a subtler taste, cashew milk might not be the right choice for you. Pros Homemade cashew milk packs 20% of your daily needs of magnesium Some store-bought varieties contain more calcium than dairy milk. Cons There can be a big difference in nutritional profiles between store-bought cashew milk and homemade, Terry says. Homemade varieties are usually higher in fiber, protein and fat. Store-bought cashew milk may be lower in calories than homemade cashew milk, but it may also have less protein and healthy fats. Cashew milk is not a good dairy replacement if you're looking for plant-based milk with high protein content. Macadamia milk Getty Images Because macadamia milk has a "more balanced flavor compared to other nut milks, it could be used on a more frequent basis and in various foods and beverages, " Terry says, whereas other plant milks with stronger flavors (like cashew milk) have limited uses. Pros Nutritionally, macadamia milk has generous amounts of omega-3 and omega-6 fatty acids. It also contains calcium, vitamin D and vitamin B12. Its consistency tends to be on the thicker side, making it a stronger choice for coffee drinks. A macadamia milk latte might hit the spot. Cons It's pricier compared to more mainstream plant-based milks, such as almond and soy. It's also not in as many stores as more popular milk alternatives, so it's not as accessible. The higher fat content makes this a higher-calorie nut milk, which isn't inherently a bad thing, but something to be mindful of if you're trying to lose weight. Banana milk Mooala Yes, banana milk is a thing, and it's actually rather yummy (if you like bananas). Taste-wise, banana milk compares to sipping on a "healthified" milkshake. It's sweet, slightly fruity and super-creamy. Banana milk is a "fun choice to add flavor to smoothies, baked goods, oatmeal, and maybe even your coffee," Terry says. "Can you imagine banana milk with Honey Nut Cheerios?" Pros Banana milk packs 8% of your daily needs for potassium, 25% of daily calcium needs (fortified, not naturally occurring) and contains vitamins B6 and C. It has a sweet, creamy banana flavor without added sugar (unless you opt for the chocolate flavor). Banana milk is easy to make at home. Cons Currently there's only one brand you can buy in stores, Mooala. As banana milk grows in popularity, other companies will probably jump on the bandwagon. However, until that happens, accessibility to store-bought banana milk may be limited for some. Banana milk lacks vitamin D compared to other plant milks, most of which are fortified with vitamin D. Rice milk Getty Images Rice milk is an allergy-friendly option for those who need to avoid nuts, seeds, soy or lactose, explains Terry. It's also a widely accessible option sold in various grocery stores. Rice milk has the highest carbohydrate content of all the plant-based milks on this list (not including sweetened and flavored options), but that's not a bad thing unless you need to watch your carb intake for health reasons. Pros Rice milk is inexpensive. It's fortified with vitamins and minerals such as vitamins B12 and D, and calcium. It has a mild flavor that's lightly sweet and versatile. Cons Rice milk is known to have a watery consistency. It may contain added sugars, gums and additives for flavor, consistency and shelf-life. Check the label for ingredients if you're looking to avoid specific additives. It is not a source of protein. Pea milk Ripple Another great allergy-friendly option, pea milk is made from yellow peas and is naturally soy-, gluten-, lactose-, and nut-free. Ripple is the best-known maker of pea milk, and Ripple milk has a pretty impressive nutrient profile compared to other plant milks. Pros Pea milk is high in protein -- eight ounces of Ripple pea milk contains eight grams of protein, making this a "solid choice for those looking for a protein-rich milk or a dairy substitute," Terry says. Pea protein is rich in branched-chain amino acids. It's a good source of omega-3s (from algal oil) and calcium. It provides vitamins A and D Cons It has a chalky sensation and aftertaste, according to some. Certain types and flavors of pea milk are high in sugar. Hemp milk Pacific Foods Soy was once the only known plant-based source of a complete protein, but hemp seeds provide all 10 essential amino acids, too. The flavor is earthy and nutty, and as with all plant-based milks, some will love it while others won't. Pros Hemp seeds contain ample magnesium, folate, phosphorus and potassium. Store-bought options tend to be fortified with additional calcium, phosphorus and vitamins A, B12 and D. Higher in unsaturated healthy fats (omega-3 and omega-6) than other plant milks. Cons Hemp is known to interact with certain prescription medications. The high fat content in hemp may lead to digestive upset if you consume too much at once, but this is unlikely to happen with hemp milk, since it's not concentrated hemp. Coconut milk Getty Images Coconut milk is less of a drinking beverage and more of an ingredient for cooking, but some varieties of coconut milk do taste good on their own. As far as accessibility, you can probably get coconut milk at your local grocery store. Pros Coconut contains medium-chain triglycerides and is loaded with minerals, including manganese, magnesium, potassium, copper and selenium. It's high in fiber compared to other plant-based milks. Versatile -- You can find many varieties of coconut milk available for different culinary needs, such as drinks, sauces, baking, cooking. Cons Higher in calories and fat. Again, this isn't inherently bad, but it-could be a con for some, depending on personal health needs, goals and lifestyle choices. It's not a protein-rich milk. Which plant-based milk is best? Getty Images "When it comes to choosing the most well-rounded option for the combination of nutrition, sustainability and versatility, oat milk and hemp milk come out on top in my opinion," Terry says. With so many plant-based milks on the market, it can be hard to find "the one," but unless you don't have access to multiple variations, you don't have to stick to just one type. "Various plant-based milks means diverse uses, culinary benefits and nutritional benefits," Terry says. "You may have one for your coffee, one for smoothies, one for baking, one for cooking [and] making sauces." If you're looking for a protein-rich, plant-based milk to replace dairy milk, Terry recommends soy milk or pea milk. Most plant-based milks are fortified with calcium and other vitamins and minerals to match or even surpass the nutritional quality of cow's milk, so protein becomes the main factor. Oh, and don't be scared of the gums and emulsifiers you see on the ingredients lists of plant-based milks. While these ingredients may cause digestive upset for some people, they're harmless for most people, Terry says. You may have heard phrases like "Don't eat ingredients that you can't pronounce" or "If you can't recognize it, neither can your body." In 2016, for example, an ad campaign attempted to demonize the additives in almond milk by scaring watchers into thinking lecithin was a shady ingredient. "These phrases are neither helpful nor accurate," Terry says. "For example, plant milks may contain added 'alpha-tocopherols' which, sure, may be hard to pronounce, but is simply a type of vitamin E." Finally, look out for sweetened flavors when shopping for plant-based milks. You might toss a harmless-looking chocolate almond milk carton into your basket, only to realize later that one eight-ounce glass has as much sugar as a candy bar. As always, reading nutrition labels can help you make healthy decisions.