“My dad has been beating the odds by fighting this disease for 15 years now.”
Emma Heaney’s family has persevered through a shared journey that has reshaped all their lives. Her father, Brian Heaney, is one of 4,000 Canadians living with amyotrophic lateral sclerosis (ALS), a progressively paralyzing disease with no cure. Four out of five people diagnosed will die within three years after diagnosis.
Brian Heaney and his daughter Emma (L to R) enjoy summer outings that help keep him connected to his family and community. (Submitted)
People living with ALS experience an impaired ability to move, speak, eat, swallow and eventually breathe. Part of the care Brian received to manage these symptoms is occupational therapy (OT), a practice that helps people stay engaged in meaningful activities of daily life.
Emma said her father’s care inspired her career choice.
“I want to improve the well-being of so many people who can benefit from OT, in the same way others in this field have helped my dad and my family,” she said.
Emma is pursuing a master’s degree in OT in Western’s Faculty of Health Sciences. She wants to become a certified occupational therapist to support disabled people in safely completing everyday tasks and using adaptive equipment to overcome barriers.
Support for students impacted by ALS
Emma received the 2024 Kevin Daly Bursary from ALS Canada, a $2,500 scholarship named after a passionate advocate for people living with ALS.
“Kevin recently passed away and that had a big impact on me,” Emma said. “I got the chance to meet him and his wife last year. I was inspired by his commitment to the ALS community and his advocacy to provide bursaries for students like me.”
The bursary fund was created in 2023 to relieve some of the costs of post-secondary education for students in need who’ve been touched by ALS.
“ALS takes over your whole life, impacting your family and finances in every way.” – Emma Heaney, family caregiver and master’s student in occupational therapy
Brian is unable to work, and Emma’s mother Tammie eventually left her job to become his primary caregiver.
“In my future career, I would love to be able to help family caregivers like my mom provide care safely,” Emma said. “Caregivers need their own kind of support because caregiving not only takes an emotional toll, but also a physical toll on their body.”
Brian is grateful for his care at home among family members who understand his needs and desires, an increasingly important consideration as his ability to speak diminishes.
“I may not be able to move or talk but I can still live well with people who care about me,” Brian wrote.
Occupational therapy supports overall wellness
Emma appreciates the holistic view of caregiving emphasized in her OT studies.
“We are learning to treat more than physical disability, but to consider someone’s environment and other factors that could be affecting them. I will bring that approach to my career, especially because caring for my dad has further developed my empathy and consideration.”
Emma Heaney completed a bachelor of science in health studies at the University of Waterloo before pursuing her master’s degree in Western’s School of Occupational Therapy. She hopes to improve well-being for people like her father, who has battled ALS for fifteen years, as well as family caregivers like her mother. (L to R) Tammie Heaney, Brian Heaney, Emma Heaney. (Submitted)
That sensitivity was particularly helpful when she worked as a restaurant server.
“I quickly noticed situations where older adults might needed help up the stairs or need a different chair to make them more comfortable. That’s what drew me to OT – being aware of people’s needs, especially in places that are inaccessible,” Emma said.
The Heaneys eventually moved to an accessible home in Waterloo, Ont. that accommodates Brian’s wheelchair, but navigating barriers remains a significant part of the family’s everyday life.
“The biggest transition we’ve had to make is always having to plan, especially when going to public spaces. Before we leave, we have to make sure my dad has everything he needs. We might go somewhere that’s supposed to be accessible, but then there’s no ramp. You have to re-plan your whole day if you can’t access a building.”
Through the arduous challenges, Emma, her parents and two siblings have strengthened their bond.
“My family is really close. We support each other and that creates an environment of hope,” she said.
Advancements in ALS research
Emma said she admires how her parents’ resiliency has endured over the years. Even now, Brian takes an active role advocating for the interests of the ALS community. He recently became an ambassador in the Canadian ALS Learning Institute, allowing him to share his opinions and experiences on advisory panels that influence and improve ALS research.
The search for a cure for ALS is expanding with over a dozen clinical trials currently active in Canada. Western researcher Dr. Michael Strong is leading a team that recently discovered a mechanism to halt or reverse the progression of ALS.
Strong was one of the first clinicians Brian met after his diagnosis. “When he first saw me, he correctly forecasted that I could live much longer than average,” Brian wrote. “I was young (40), male and my disease started in my hands.”
The pace of research into causes and mechanisms of ALS keeps Brian optimistic an effective treatment is within reach.
“More companies than ever before are doing trials. A cure could be a year or three away if we are lucky!” Brian wrote. “But since I got ALS back in 2009, there is one thing I know – I am not lucky.”
Strong relationships bolster quality of life
While research gives the Heaney family hope for others battling ALS, they are now focused on ways to sustain Brian’s quality of life.
“The progression of my dad’s disease limits opportunities to improve his physical health, but my family and I try to improve his emotional and mental health by ensuring he’s included,” Emma said. “We make space for him in conversation to share his perspective and actively interject if others speak over him. We prioritize activities he enjoys.”
While the daily responsibilities of her father’s care could quickly mount, Emma adapted to the stress.
Family and friends celebrate with Brian Heaney as he crosses the finish line at the Walk to End ALS, an annual fundraiser held in cities across Canada. His team, Heaney’s Heroes, has raised more than $150,000 over 14 years. (Submitted)
“I learned quickly how to roll with the punches and see the beauty in little moments of happiness, like family dinners, movie nights, walks in the neighbourhood or sharing a laugh while watching TV.”
Emma said her family cherishes the support of friends who keep in touch, visit Brian and even help out with work around their home such as snow removal. A large team of friends and family formed “Heaney’s Heroes,” taking part in the Walk to End ALS for the last 14 years.
“I would not be here today, or want to be, if it wasn’t for the love and support of my family,” Brian wrote.
For Emma, the impact of ALS on her family has led to more than a career direction.
“ALS has taught me about resilience, caring for others and the importance of self- reflection. Most importantly, I’ve learned to prioritize time with people I love.”
