living with als: navigating care and finding strength in community 'gives you hope'
“when you hear other people sharing their experiences, their drama and their lived experiences, it gives you hope. it gives you something to say, ‘ok, they're doing it. i can do this’”
6 minute read
rick zwiep, centre, surrounded by friends and family at a recent als canada fundraiser where the team “rick’s rocks” raised $10k for research and patient equipment.
supplied
during the covid-19 pandemic, rick zwiep and his wife joyce were walking a lot for exercise and to relieve boredom, as many people did. over time, it became increasingly difficult for the burlington, ontario man to make it through their regular routes.
“i was getting pain down the back of my legs, one leg in particular. and i also noticed some differences in my walking gait,” says rick, 68.
at first, he thought it might be the new rocker-style running shoes that he was getting used to, which made the walking “feel weird when my foot was sort of slapping down on the pavement.” the pain got worse to the point where instead of walking 15 kilometres a day, he could barely go to the mailbox.
that was the beginning of the progressive pain that led to neurological tests for nerve function and a referral to sunnybrook hospital in toronto to meet with a neurologist who specializes in als, or amyotrophic lateral sclerosis. after more tests that ruled out the need for surgeries or other therapies—and plenty of time to worry and wonder what was next—he was diagnosed with als in the summer of 2022.
the progressive neurodegenerative disease affects nerve cells in the brain and spinal cord, where people gradually lose muscle control. this causes muscle weakness and paralysis over time.
advertisement
rick knows what it feels like to process life with a disease where there is no cure, few effective treatments and a remaining lifespan of about three to five years on average. while every als journey is unique, rick’s experience reflects a path many take—one that starts with learning about the disease, building a care team, and finding community.
learning more about als and treatment options
“once i got als, i started to deep dive because i don’t have a background in biology or life sciences,” says rick, who retired in 2024 from his career in technology sales and marketing. “so, i started to attend webinars and read books to understand more about what’s going on with me and to better understand reports on research coming out.”
being informed about als and what’s happening in research in canada and around the world can help you understand more about the complexity of als and how it progresses. studies show that investigation for treatment is underway, although many don’t translate into clinical treatment.
“they look promising in the preclinical stage and then they just don’t play out in real life. and this goes back to the problem of when you don’t have something you can measure to say i’m getting better or worse because of this drug,” rick explains, adding there are no tests or definitive biomarkers to determine how well therapy works. there’s a basic self-questionnaire to look at current functions and abilities.
advertisement
while most als cases are sporadic, a small fraction are genetic. about three per cent of all als cases are linked to a mutation in the sod1 gene. what has gained momentum in research and development is a new breakthrough drug that is extending lifespan. early in 2025, health canada granted conditional approval of qalsody to treat adults with als in cases linked to a mutation in the sod1 gene, cbc news reports.
as rick says, “it’s a spinal injection, once a month, right into your cerebral spinal column. and it seems to really halt the progression, which is miraculous and amazing. and now people are excited to say, ‘well, if we can do that for that genetic mutation, what can we unpack from that for other genetic variations’ or perhaps even people like me, who just got sporadic als with no genetic indication?” he’s hopeful other genes will be discovered that are related to als and says that collecting data on people with als could lead to ai analysis and breakthrough therapies. “there’s lot of hope,” he says.
rick and his wife joyce posing for a photo at a wedding.
supplied
inspired to advocate for others with als
building a relationship with a neurologist is key to medication monitoring and quality of life. not everyone can get to a specialized als centre for treatment, but these clinics offer integrated care by a team of professionals. als canada has a list of clinics across canada. these multidisciplinary clinics provide education, monitoring, and timely interventions while communicating with the person’s family doctor and community healthcare providers. clinics provide people with the resources to manage als, including mental health and palliative care support.
advertisement
as well, the clinics and their professionals are part of the research community for als discovery in canada. as rick says of als clinics, “you can get your appointments every three to six months, depending on how your progression is going. the doctors and everybody are so caring and so humane.”
a care team can help monitor the success of drug therapy and support access to therapy. rick was inspired to join the patient-led als action canada to find a cure, fundraise and advocate for equitable access to treatment. he’s become an outspoken advocate.
“i take a drug today called radicava,” he says. “it’s a $10,000 a month drug mercifully paid for by the ontario government, which wasn’t always true. part of the whole care cycle is arguing with your insurance company, arguing with the government. agencies try to lobby to say we should have this approved and let anybody take it who has got als because restrictions are based on how far in your progression you are.” regulations differ from province to province.
social workers and other care providers on the clinic teams can help navigate the logistics of who to contact and where to turn. this is especially important given the high costs of living with als, including home renovations to make rooms accessible, motorized wheelchair and assistive devices like a hoyer lift in your home to transport you as you become less mobile. then there is personal homecare that eventually will be necessary around the clock.
advertisement
finding support through the als community
disease can be isolating, so finding people who share the lived experience of als can be a huge benefit. als action canada, for example, has a virtual peer support group for members to talk about daily challenges and ways to cope.
rick says that hearing the diagnosis is overwhelming at first, making the support group so valuable for sharing practical advice. “there’s just this idea of you have a terminal diagnosis and you start thinking about everything that needs to be done. i need to get a wheelchair and house that i can live in when i can’t get upstairs anymore in the future. what am i going to do? what am i going to do about care?”
because of the high care needs that come as the disease progresses, some people with als don’t want to be part of a patient group to see peers in the more advanced stages of als. as well, medical assistance in dying (maid) is a choice many people turn to, given the deteriorating quality of life and needing a spouse or adult child to focus their lives on patient care.
“i met a fellow who within a year of meeting him, he’d decided his quality of life was just not where it should be. and he took the maid path out. with als patients, a lot of people choose that,” he says, adding that people in his support group have announced their maid date.
advertisement
“you almost want to talk them out of it, but you can’t. you just basically surround them with love and affection and wish them well. the more you go through that, the more it starts to mess with your own mind, right? to say, ‘well, is that a path that i want to take?’”
for rick, though, the friendship of people he’s gotten to know in the support group is worth the pain of losing them.
“when you hear other people sharing their experiences, their drama and their lived experiences, it gives you hope. it gives you something to say, ‘ok, they’re doing it. i can do this.’”
share story
