Daniel Berthiaume’s Story

When I retired in 2009, I became a volunteer for the ALS Society knowing full well what I was getting into

We at the ALS Society of Quebec are proud of all our volunteers. We’re shining a spotlight on one of these volunteers in each issue of the Bulletin. Daniel Berthiaume is a specialized educator who has long worked in a rehabilitation centre for people living with a disability. Father of two grown children and grandfather of two little ones, Daniel lives in Montreal with his wife. He has been helping us out once a week since 2009.

I’ve known the ALS Society of Quebec for a long time. During my 34 years as a specialized educator at Montreal’s Lucie Bruneau Rehabilitation Centre, I worked in partnership with helpful parties from CLSCs, specialized ALS clinics and, of course, the ALS Society.

As a system navigator (someone who helps new patients navigate the healthcare system), my role was to assess the needs of people living with a disability, to locate the appropriate helping resources within the Centre, and to follow up as the situation changed over time. Over my last five years there, I worked with people affected by multiple sclerosis and amyotrophic lateral sclerosis.

I remember very clearly the day that someone with ALS, who I was trying to assist as a system navigator, stopped me in my tracks with a question: “What am I supposed to do about ALS?” For her, everything was futile and life was, for all intents and purposes, already over. I thought about that a lot. Finally, I came to understand that, while we can’t change much about the illness itself, we can still take advantage of the time we have left with our loved ones. It was my role to help people do just that.

When I retired in 2009, I became a volunteer for the ALS Society knowing full well what I was getting into. I help out one day a week. I try to pitch in wherever there is a need. My tasks include sending birthday cards (taking the time to personalize someone’s birthday with a hand-written card); participating as a volunteer in activities such as the Walk for ALS and the Celebrity Softball Game; taking photos of our members and their families during the Society’s regular outings; preparing information kits (collecting all the information, creating files suitable for printing and assembling the kits); creating computer files to assist with monitoring costs and equipment; and leading our interactive group meetings for people affected by ALS.

The ALS Society was a huge support to me when I worked at the Lucie-Bruneau Centre. They provided advice and equipment to those affected by the disease and their families, which was of great assistance to us.

It’s my turn, now, to help the ALS Society carry out its mission. The ALS Society of Quebec is made up of a great team of people who are extremely passionate about their work. It’s not an easy task to tackle an illness like this one and to talk about the end of life, but they do so with great compassion and caring for others. It’s their deep commitment that allows them to keep at it.

As for me, I’m inspired by all those with whom I’ve had the honour of sharing both difficult and lighter moments. It’s the memory of those we’ve lost that motivates me to help those who need me now. Thank you for your attention.

Daniel Berthiaume

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