Guest post: Providing connection and support for people and families living with ALS
by Family Councils Ontario
By The ALS Society of Canada
First thing in the morning, many people have a similar routine: they wake up, get out of bed, walk to the bathroom, take a shower and brush their teeth. They may walk to the kitchen, brew a cup of coffee and make breakfast. Next, they grab their keys, turn the lock in their front door and drive to work. For most people, these are menial, everyday tasks. But for someone living with ALS, each one of these tasks can be exhausting, and even impossible.
In Canada, there are an estimated 3,000 people living with ALS (Amyotrophic Lateral Sclerosis), a disease that gradually paralyzes people because the brain is no longer able to communicate with the muscles of the body that we are typically able to move at will. Over time, as the muscles of the body break down, someone living with ALS will lose the ability to walk, talk, eat, swallow, and eventually breathe. While the majority of those affected are between the ages of 40 and 60, the disease can affect anyone regardless of gender, ethnicity or age.
That is why the ALS Society of Canada exists — to make the ALS journey less confusing and isolating for people living with the disease, their family members and caregivers. As a terminal illness with a prognosis of two to five years, ALS is an emotional and financial challenge, as well as a physical one. Together with our provincial partners, ALS Canada can assist people living with ALS in Ontario by connecting them to support services and equipment for a better quality of life.
Kristine Lee is just one of the 1,000+ people living with ALS in Ontario.
“When I was first diagnosed with ALS, I received a home visit from Regional Manager, Sarah — she even came to my work! I no longer felt so alone because I had someone who would support me and my family through this journey.”
By registering with ALS Canada, people and families living with the disease become eligible for one-on-one support from a Regional Manager like Sarah. Regional Managers offer home visits to discuss individual and family needs, provide information and education, and assist with connecting people to other healthcare providers and community supports. They also run support groups for people living with ALS as well as caregivers.
Many of ALS Canada’s support groups are hosted in long-term care facilities across the province and anyone registered with ALS Canada is welcome to attend a support group, including caregivers. Some support groups are open to both clients and caregivers and others are for caregivers only.
“[ALS Canada’s support groups] are a great opportunity to meet other patients, their families and caregivers,” says Brian Heaney, a husband and father of three who is living with ALS. “They are an opportunity to share stories, experiences and knowledge in a friendly social setting.”
People and families registered with ALS Canada also have access to ALS Canada’s Equipment Loan Program, which is essential for safety, comfort and functioning as a person living with ALS. Some examples of equipment available through our program are lifts, wheelchairs, hospital beds and communication devices. As an organization that is 100% donor-funded, ALS Canada relies on the generosity of donors to provide these services and support to people and families living with ALS. To learn more about our services and/or donate gently-used equipment, visit www.als.ca/care.