when als rewrites retirement: 'my plans for the future were being robbed from me and my family'
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tracy brants and her daughter, anika (left), and pam skinner, with her daughter, rachel (right). both pam and tracy are now retired and navigating life with als.
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when you’re looking ahead to retirement, you might be planning on some travel, more time to get active with family or even a new job doing the work you love.
but sometimes plans change.
in the fall of 2024, tracy brants celebrated her upcoming retirement after 30 years as a detective with the ontario provincial police by trekking to base camp on mount everest. she was also starting a new job as a workplace investigator at a small company, so she and her husband would have extra money for home renovations and to help their daughter through university before both retiring in a few years.
pam skinner, an avid gardener and longtime vice president at niagara college in ontario, planned on doing more of what she loved most in her retirement: physical labour in the garden, digging and planting, on her extensive country property in niagara, hiking, camping and family time, especially with her two young granddaughters.
from good health to devastating diagnosis of als
both of these vibrant women thought they were in good health and had a lot of good years ahead—until they received a devastating diagnosis: als, amyotrophic lateral sclerosis. if you haven’t heard of als, it’s been described as “living in a glass coffin,” watching yourself fade away.
the progressive neurodegenerative disease damages nerve cells in the brain and spinal cord, so people gradually lose muscle control and function. this causes muscle weakness and paralysis over time, and eventual respiratory failure. there’s no cure, although treatments can slow progression. the harsh reality is that 80 per cent of people with als die within two to five years, but some die within months of diagnosis.
tracy and pam are among the 4,000 canadians living with als. they both joined the als society of canada (als canada), the national non-profit driving research and support, and are bravely sharing their personal stories to raise awareness and funds.
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from pushing physical limits to losing mobility
tracy, 55, lives in strathroy, ont., just outside london, where she goes to the als clinic. her life today looks very different. but first, the big win: she and a friend, also a retired colleague, made it (almost) to base camp. “we actually had to divert to gokyo lake because of weather,” she explains of the alternative climb.
“i’ve always enjoyed physical challenges. i loved pushing myself and the feeling of succeeding,” she says. she types on her phone or speaks with a communications device because she can no longer use her voice.
“i also travelled a lot for the same reason. i believe both physical challenges and travelling help you grow as a person.”
just before the adventure in nepal, she began experiencing odd early symptoms.
“i remember walking through the airport and having my feet kind of slap against the ground,” she recalls. “i found after having just one or two drinks, my speech was slurred. there was also a bit of a problem swallowing and some weakness in my right hand. all very minor, but enough to concern me.”
back home, she went to her family doctor, who dismissed her concerns. he thought the speech changes were because of aging, the hand difficulty was carpal tunnel syndrome, and the swallowing difficulty was acid reflux. her doctor originally refused to refer her to a neurologist. she’d done some research, and when she expressed her worry that it could be als, he told her that even if that was true, there was nothing to be done because the disease is terminal.
he added that there is only one medication and he could prescribe it. not true.
“i was extremely frustrated dealing with my family doctor, a story told by so many other als patients,” she says.
after many follow-up calls asking for a referral, her doctor suggested she see a speech therapist to get a report to support a referral, which she did at her own expense. the speech therapist was concerned that her speech difficulty was something serious, and with her report, tracy’s doctor finally gave her a referral to a local neurologist. als was suspected, and she was quickly sent to the als clinic at london health sciences centre for tests that excluded all other possibilities, leading to the diagnosis of exclusion, which is als. there’s no definitive test.
sponsored by:
als society of canada (als canada)
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“i felt that all my plans for the future were being robbed from me and my family,” she remembers, hoping that the diagnosis would be multiple sclerosis, a chronic autoimmune disease that reduces function, but you can typically live with it for many years.
“i was both relieved to have an answer to what was happening to me and also devastated. i tried to hide my disease at first, but by june 2025, my speech issues became apparent to my family. telling them my diagnosis was the hardest thing i’ve ever had to do. hurting loved ones, seeing them in pain, and not being able to fix it for them is heartbreaking.”
tracy has her devoted husband markus, son lukas in the air force and daughter anika at university, who is home for the summer. she uses the word “disempowering” to describe als and how it’s chipped away at her abilities as she tries to stay positive and enjoy the days. “my world feels so small now without physical activity. i have a stationary recumbent bike, which i try to ride for 30 minutes a day. it feels good to move a bit.”
movement is challenging, but she’s determined.
‘i won’t let als change who i am’
“i’ve always been a positive person, and i won’t let als change who i am. being hopeful and advocating for money and awareness has given me a new sense of purpose. being hopeful helps my mental wellbeing. i also use humour and often laugh at myself.”
she uses a rollator walker in the house and a travel chair outside of the house. she sleeps with a ventilator machine for breathing and has a bath bench for bathing. “luckily, markus is a big, strong guy who can lift me to my feet, or else i’m not sure what i’d do every time i needed to get up,” she says.
“losing function has been so disempowering. i’ve always been fiercely independent and private. now i am dependent on everything. every time i want to even move, i need help. not being able to speak is extremely isolating. i can’t type fast enough to keep up with conversation. if i don’t have my phone handy and try to express something, it’s very frustrating for everyone.”
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connecting with als canada has been a lifeline for tracy, offering a community support person, an equipment-lending program, learning resources and the opportunity to connect with others in a monthly support group. “the group makes me feel understood and supported,” she says, adding she’s also part of a private facebook chat for women living with als where she can be more at ease talking about the physical and emotional difficulties.
finding strength as a planner and problem-solver
pam, too, has benefited from the als canada community through its support programs and the opportunity to put her tremendous leadership skills to use in advocacy. at age 71, what’s got her through the disease is her strength as a planner and problem-solver, she says. these are traits she developed through her deep experience in business management for the provincial government and her executive role at niagara college.
she started to notice her gait was a little bit different in late 2022, and then by early 2023, her right foot was flapping on the floor. (she thought her shoes were noisy.) then, cramping in her legs finally sent her to her family doctor. she saw a neurologist who referred her to the als clinic in hamilton, ont., where she was diagnosed. along with the sadness, anger and worry for her family and sharing the news, she adopted a “get prepared” approach.
“my immediate reaction was, okay, i need to get things in order. what can i do to maintain as much mobility and activity as i can? i want to understand more about what treatments are possible and what to do. we need to look at our house and see how i can manage to get around. at this point, i had started using a cane,” pam explains, adding she’s now in a wheelchair. she asked about medical assistance in dying (maid), organ donation and what assists she would need at her job to keep working. she didn’t retire until january 2026.
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“i was planning things for me to be ready, for my family to be ready, for me to be able to continue to work. and i was sad. i was very sad. sad about what i would miss and concerned about how it would affect my family.”
treatments for genetic form of als
she also had the genetic test for als, which came back positive. a small percentage of people have this form of als, which has sparked decades of research into what triggers it in some and not in others, and how that problematic dna can be influenced through treatment.
for almost a year now, pam has been on a newer drug for those with the genetic form of als, and it’s helped slow the progression. she has a spinal injection at the clinic every four weeks. she’s noticed that the dexterity and strength in her hands have even improved, along with her handwriting.
how has als changed her? she talks about accessibility, needing to call ahead to restaurants, for example, to see if they have accessible bathrooms. many don’t really know the extent of what’s required for safety and privacy, so she’s followed up with emails to businesses to encourage making changes to welcome people with mobility challenges.
“i’m certainly much more aware of how restricted one’s life becomes when you’re in a wheelchair,” she says.
“i can still get in and out of our family car. i can get up from the wheelchair, turn around and grab the bar and swing myself into the car. but when the time comes that i can’t do that, i’m stuck unless we want to spend an outrageous amount of money to get a wheelchair accessible vehicle. because public transit for wheelchairs is not up to the task.”
the power of love to see you through
living with als has also shown her how thoughtful and helpful people in her life truly are, anticipating her needs so she doesn’t have to ask for help. “when friends are visiting, they’ll say, ‘can i bring something because i know it’s not easy for you to prepare things.’ i have just been so touched by the thoughtfulness of friends and family. it’s been wonderful. and i guess i’ve always been so self-sufficient and independent.”
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her daughter rachel is also taking on gardening chores, allowing pam to supervise the work to plant more perennials and bushes that are less labour-intensive for the future.
as pam says of rachel’s commitment, “what she has said to me repeatedly is, ‘i know how much the garden means to you and i want to keep it that way for you.’”
so, if there’s a reason for als, maybe it has to do with love and being there for each other in the most trying times. this is a terminal disease, at least for now, as tracy points out: “people with als have hope for a cure. if not for us, then the next generation.”
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