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If we were to ask you to pick an object defining compassion, what would you choose?

For Phillipe B, it is his electric toothbrush. Recently diagnosed with amyotrophic lateral sclerosis (ALS), Phillipe shares his experience of the disease, and his vision of a life with a neurodegenerative disease. He opens a window on his daily life as a young father, a partner, his experience with sign language, but mainly his undeniable appetite for life that has been part of him for a long time now.

Although Phillipe is being followed-up in Gatineau, he chose the Neuro to participate actively in research projects. That makes him one of the many faces of our ALS community here at the Montreal neurological institute hospital.

This interview was done at the Sisters of St Mary, Ottawa, that Phillipe joined for a humanitarian mission in 2005.

Amyotrophic Lateral Sclerosis (also known as ALS, Lou Gehrig’s disease, or motor neuron disease) is 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.

ALS is not contagious. There is no cure for ALS and few treatment options for the majority of people living with the disease. Approximately 80 per cent of people with ALS die within two to five years of being diagnosed.