Amyotrophic lateral sclerosis, Lou Gehrig’s disease, is personal for me. I watched my father Joseph struggle with the disease from beginning to end; it had a profound effect.
Dad was from a lumber town, Burk’s Falls, Ont., then population 500. They were working people, so it was an achievement for him to attend the University of Toronto and earn a degree in dentistry. He opened a practice on Yonge Street in Toronto and made a success of his life.
Dad curled at the Toronto Granite Club; that’s probably why I took up the sport. He loved gardening and fishing. As a boy he taught me how to bait a hook and where to find the fishing holes. All these years later I still return to those same spots. I remember family motor trips every spring down the Eastern seaboard as far south as the Carolinas. We were happy.
My father walked to work every day for fifty years. He built a thriving practice and was looking forward to a long retirement – then something went wrong. He found it difficult to keep his balance, and kept falling. He consulted one doctor after another, desperate for a diagnosis. This was in 1986 and ALS was considered very rare and little known.
I remember the day I visited my father at home and he sat me down in the living room: “I have amyotrophic lateral sclerosis,” he said. I replied, “What is that?” Lou Gehrig’s disease, he said.
It’s the same affliction that has struck Mauril Bélanger, MP for Ottawa-Vanier for 21 years. The last time I saw Mr. Bélanger it brought tears to my eyes, thinking of my father. It is awful. It ravages the body. My Dad moved from one cane to two, to a walker, to a wheelchair, to a bed, to the grave in four years.
Near the end all he could do was lie in bed and watch television. I was elected a member of the Ontario Legislature; Dad liked to watch the Queen’s Park channel, but saw his health decline so rapidly he couldn’t press the buttons on the TV remote. In his last year of life he could neither move nor speak. I sometimes wondered if he wished for death.
Recalling Dad’s last years influences my view of right-to-die legislation. Many court cases involving assisted suicide involve plaintiffs who suffer from ALS. It’s a terrible way to die, and it will affect how I will vote on this measure.
My father had great spirit. He never complained. ALS patients feel no pain but witness their own decline. I never heard Dad pray for death. “It’s a bitch getting old,” he told me once. He was 86 when he passed away, still lucid to the end.
We don’t know what causes Lou Gehrig’s disease. It is genetic? Possibly; my children are concerned they may carry a genetic mutation. My father survived four years with ALS, but some people live much longer than that.
Researchers need funding to find the answers, perhaps a cure. Dad had many good years before ALS; many Canadians aren’t so lucky. They deserve our help.
(Editor’s note: the author is five-term MP for Dufferin-Caledon, Ont. and sponsor of Bill C-205 An Act To Designate The Month Of June As ALS Month)