the harsh reality of als: facing the unknown takes determination and community support
8 minute read
“before als i loved to sing all the time,” says ana arroyo, an ontario mom of two. “now that i am unable to sing out loud, i just sing in my mind.”
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this article was produced by the healthing editorial team with the support of a grant from als canada. while als canada made the production of this article possible, they did not have any editorial influence or control over the content, including review prior to publication.
ana arroyo remembers what it was like to be able to take long walks in the morning, sing and dance, and do activities with her family, giving them all big hugs like she used to. she’s a joyful person, generous with her love for those closest to her, and all those who support her life as it is now.
arroyo, 40, lives with als, or amyotrophic lateral sclerosis. als is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord, where people gradually lose muscle control. this causes muscle weakness and paralysis over time with eventual respiratory failure. while most als cases are sporadic, a small fraction is genetic.
als can happen to anyone, with a one in 300 lifetime risk, according to the als society of canada (als canada), the national non-profit driving research and support.
when abilities diminish, als requires determination
“before als, i loved to sing all the time,” says arroyo, an ontario mom of two. “now that i am unable to sing out loud, i just sing in my mind.”
her breathing capacity is limited, and she speaks through a communications device. she is determined to enjoy her life and take each day as it comes, even as her abilities continue to diminish. one of the worst parts of living with als is losing independence and depending on someone to do the most intimate and essential things, which is such a burden for your caregivers, she explains.
“in my case, my husband and my eldest daughter. i know how deep they love me, but i can see their exhaustion after a night of interrupted sleep, the pain in their backs after lifting me up. the terror in their eyes when i choke. the other day, my husband was joking about how every time he finally sits and tries to relax, i ask for something else. i was laughing so hard and suddenly i choked on my saliva. a nice moment transformed into a terror one.”
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it didn’t start out this way for arroyo, having to be so completely reliant on care because of als. she was able to take a few steps, use her hands to grab and use her phone, computer mouse and the control of her power wheelchair. she could stand up by herself when leaning on a wall and hold her head up while standing on her feet. she could also take long rides in a car.
“now i can’t do any of those things,” she says, adding that her family went to picturesque goderich, ont., for a few days a couple of years ago, visiting the town, the little stores around the central park and the beach. “it was a wonderful time of sharing and laughing,” she says of one of her favourite memories. her friends describe her as an optimist—fun, generous, curious, kind and thoughtful. “i’m also impatient and bossy.”
long road to als diagnosis
arroyo is from ecuador, where her early symptoms began in 2019. she started tripping and noticed that her left leg was stiff. then she noticed a strange tremor in her feet, which she now knows as clonus, an involuntary reflex brought on by damage to the central nervous system.
she was passed from doctor to doctor for tests and assessments before a neuromuscular doctor finally confirmed that she had als two years later. she remembers it as a long, difficult and expensive process, and the diagnosis felt overwhelming.
“i was scared and devastated. i was grieving for all the things that i was going to lose, especially because i was afraid of how this was going to impact my family’s life.” family and loved ones mean everything to her, and she decided to come to canada in 2023 to be near her sister and her sister’s family. they’ve been a tremendous support, helping her connect to als canada for resources, events and a sense of community.
like others living with als, she wants to give back to the organization and have a voice in advocacy.
sponsored by:
als society of canada (als canada)
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“i had to face the pain of knowing that the disease would paralyze me and ultimately take away my life, but suddenly me and my family had to deal with so many burdens, like what will be coming next, how to adapt our lives to this new reality or how to be prepared for the progression of my disease,” arroyo recalls.
an als canada front-line “community lead” representative guided her family through the journey with compassion and empathy, coming to the house as many times as they asked her to. the service is offered to families in ontario through als canada, while other provinces offer similar outreach services through their own organizations.
“she showed us the als canada catalog of equipment in the loan program and made sure i got all the things i needed right at that time and for the near future,” like the power wheelchair that she used to use, the reclining chair where she spends much of her day, the hospital bed and air mattress that have been game-changers, the tilt wheelchair that she uses now that her breathing capacity has declined and the hoyer lift that her caregivers will soon need to safely lift her up from bed.
the loan equipment program relieves some of the financial burden of living with als. those big expenses that you would incur as a family or an individual, you don’t have to spend the money on. (there’s a new travel buggy in the loan program, which is a powered lightweight wheelchair, just 22 pounds, that can go in the back of a car.)
als challenging to navigate
“our hope is that people with als don’t fall through the cracks in the health-care system,” says kim barry, als canada vice-president of community services. she explains that als looks different for everyone and can change dramatically, so being prepared for what’s next isn’t easy.
“one day someone is relatively stable and then by the end of that week, they’ve already changed. and so they need a lot more support. or somebody has stayed stable for six months, eight months, they haven’t needed anything. and then all of a sudden something happens, and then they need a whole bunch of supports to be put in place.”
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they might need professional home-care services, an occupational therapist to visit to assess for equipment, then support for family on training for equipment. further, a loved one may need placement in a long-term care facility if care needs become too significant to manage at home.
barry points out that the critical loan equipment program costs about $1.8 million to run, relying on donors, fundraising and some government funding. in 2024, the provincial government gave $3.2 million for the equipment program and community services (a boost), but the equipment program funding is renewable, so als canada must demonstrate need.
“we have base funding, which means it’s guaranteed for community services, but our equipment is on renewable funding. we still have to prove that this is a program that is of value to the community,” she says, adding that a walker might cost $500, but someone may only use it for three months, making the loan program a huge help.
als canada is always quick to respond to people and their caregivers with knowledge and understanding. there are about 4,000 people in canada living with als, and 1,000 people are diagnosed each year. als is referred to as a rare disease, but it’s not as rare as other conditions, barry says. and the harsh reality is 80 per cent of people are expected to die within two to five years of a diagnosis.
while there is no cure, some drugs help slow the progression in some cases. a newer drug for the small number of people who have the genetic form of als has worked for some to halt progression and improve symptoms.
als canada offers community
“when someone receives a diagnosis, which is utterly devastating to everyone, we’re there within the first few days to make sure that they have the resources and the support they need. and then that person is with them as much or kind of as little as they want in terms of information, resources, seeing them in their homes, helping them navigate different aspects of home care or the emotional aspects of dealing with als,” says barry. “and then they’re there until the unfortunate part, when someone passes away, they’re able to provide support to the family after.”
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arroyo thinks of her family first when it comes to her connection with als canada. last year, she and her family were invited to a blue jays game with a viewing from a blue jays suite in the stadium. “we had the chance to meet and interact with other people and families affected with the disease and with people of als canada. it was all so exciting and so fun, but i can’t describe the joy my youngest daughter experienced,” she says.
“it meant the world to me to share these moments that she will never forget. and she also had the chance to meet other kids in the same situation as her. that made her realize that she’s not the only kid who’s going through this hard time, and sure helped her to deal a little bit better with her emotions about me being sick.”
there are also virtual support groups through als canada for caregivers and people living with the disease across the country, giving each other strength, advice, and that important feeling of connection. people find comfort even though uncertainty never leaves them.
“i am afraid of how much harder this situation will become,” says arroyo. “i am afraid of the physical and emotional pain that’s still to come. i am worried about the toll this situation will take on the mental health of my nine-year-old kid, who is growing so fast and needs her mom to be there for her. i am afraid of the pain they will experience when i pass away. i am afraid of not being there for my daughters’ birthdays, for their weddings, for when they become mothers or when they decide they want something else for their lives and need their mother to talk about it or just to ask for a hug. i am afraid of what i will miss and not to be there when they will need me.”
her touchstone is her loved ones, and her message to others with als is from the heart.
“live at your fullest. share time with your family and friends and make some memories. look for the support of your community. live one day at a time and feel free to let your emotions out.”
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