Steve Daly loved to belt out a tune for family and friends. The 50-year-old husband and father of four is known for his extroverted personality and, before being diagnosed with ALS, enjoyed playing hockey, riding road bikes with friends, cooking for his family, taking his kids to their sporting events and generally being busy and constantly on the move.
That all changed when Steve discovered he could not project his voice in the same way as he could in the past. “I am known to be loud and suddenly, I couldn’t quite get the same volume. I especially noticed it when I tried to sing,” he says. He also felt his breathing was strained when he worked out and found that he couldn’t control his emotions very well. “Something as simple as the Leafs winning a close game would give me tears. My wife chalked it up to aging, but I felt in my gut that something was up. That said, I never thought it would be something like ALS.”
A friend who was a doctor was concerned about Steve’s list of symptoms, so he referred him to a neurologist, who conducted several tests. “I was diagnosed fairly quickly; I know this is not the norm and I am forever grateful to my friend for helping me navigate the process,” Steve says.
Steve owns a paediatric therapy clinic that helps children living with autism, developmental delays and mental health concerns. He was eager and ambitious to open more clinics and was focused on expansion before being diagnosed. (He’s proud to be opening one new clinic in Oakville early next year.) In addition to work, Steve was playing hockey on Monday nights and going on long rides with his friends on his road bike. He coached his four kids to play hockey and they were always at Centennial Park in Toronto where Steve took them for track practice and cross-country running. He and his wife, Cory, took their children on great vacations, something that Steve misses now that travel is not as easy.
“When I was diagnosed with ALS, it was like whammo, everything changed. I was slurring, I had trouble breathing and my muscles started to be taken from me. Talking was always my most marked characteristic, it is how I think things through, get work done, connect with people. That has now been taken from me and I find it very hard to navigate things without my voice. I was a social animal and always out with friends, but I can no longer do that and for me, that is really the worst part,” Steve says.
Steve leans on his wife Cory and their kids for their companionship and their caregiving. Cory and Steve have a great love story. They met in university but didn’t start dating until years later. They had the same large group of friends and their wedding was a blast because of that. “We have a very joyous marriage and really approach life with a desire to make the most of it,” says Cory, a counselling therapist who works with children.
Cory’s mother passed away from cancer when she was 22 years old, and she stepped into a bigger role for her younger siblings. “I learned a lot from that experience, namely that life can be short and so it is best to enjoy every moment,” says Cory, who likens Steve’s prognosis and path with ALS to an existential challenge. “In my work as a counsellor, I often try to help clients embrace the cliche, ‘one day at a time’; I find now, that I need to take my own advice,” she says.
Cory finds that the things Steve needs help with continue to change from one week to another. “At first, it was emotional support and solidarity. I also felt a big part of my job was helping our kids navigate the news. The next big thing was Steve losing his speech; while he still has a voice, but has to strain to use it, his words are hard to understand and so he uses technology. In larger groups, he looks to me to help fill in gaps,” Cory says.
For Steve and Cory, knowing that help is available is a relief. “Steve uses a BiPAP and a cough machine and ALS Canada helped to coordinate this equipment,” Cory says. “We are in the early stages of the disease, and so haven’t needed much yet, but it is a comfort to know they are there as things continue to progress. Meeting Sarah, our Community Lead, was a very warm support to know there are resources to help as things move forward.”
Steve echoes that sentiment. “People at ALS Canada make you feel a part of something, and they offer support and groups of people looking to get past these challenges. David Taylor, the organization’s VP Research, has given me a lot and for that I’m eternally grateful. And I enjoyed meeting Sarah; she is a great resource for all types of help.”
ALS dwarfs any challenge he’s faced in life, but Steve says he’ll never give up hope and encourages others who have received an ALS diagnosis to hold on to hope as well. “While I don’t hope that the disease will disappear (as that feels untrue), I hope for good days and quality moments with my friends and family and that I enjoy the time I have. I think it is important to know that you are always living until you die, whenever that may be, so keep going and keep doing what makes you happy. Never give that up. I haven’t and that’s what keeps me going.”
Steve’s family knows that time isn’t endless – that the family grapples with ALS makes time seem more valuable, in shorter supply. For the Daly family, the time for hope and more precious moments with loved ones is now.
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