Sunday, 13 March 2016

Awareness, Sadness, Loss

ALS has been in the news here in Canada for the last couple of weeks, or at least stories related to people with ALS. This last week, it was Maruil Belanger taking up the post  as Honorary Speaker of the House, in the Canadian House of Parliament. It's been difficult to watch his progression. He first noticed a problem with his speech last October during the Canadian Election campaign.

His progression has been swift, as it is with most bulbar onset PALS. By November he was having a serious problem speaking, and went to see his doctors. They gave him that dreaded diagnosis, which he shared with Parliament while withdrawing his nomination for Speaker. In the last few months he has completely lost his ability to speak, lost much of the use of his hands and arms, and is well into the throws of losing the use of his legs. In just a couple of months he went from walking to needing a walking, from striding to shuffling. Yet he walked to the Speaker's Chair wearing the Speakers gown, fulfilling his dream of being Speaker, if only for a day.

The week before that, Canadian news was filled with the story of an Calgary woman who received a court order permitting a doctor assisted death. It's a quirk of Canadian law that people in Quebec have had this dispensation without recourse to the courts since last December. In that province there have been about 20 assisted deaths since implementation on December 15, 2015. The rest of Canada is waiting for a ruling from the Supreme Court, allowing only exemptions to those who apply to the courts for permission.

This brave Calgary woman had ALS. She was diagnosed in April 2013, just a few months after I was diagnosed. Her progression was similar to mine, but more rapid, or shall I say more typical. By the time she chose to end her life, she was fully paralyzed with the exception of a small bit of movement in her left hand. She could not speak, but was able to communicate by typing.

She was granted the personal exemption from the courts to allow a physician assisted death on February 29. On March 1 she followed through with the process, having a doctor assist her with the process of dying with dignity, leaving behind a life torn from her by ALS.

It's been an interesting couple of weeks for PALS all over Canada. This increasing awareness of the disease, with the Prime Minister calling for increased research for a cure, the increasing awareness of how our lives end, with the courts recognizing the pain and suffering endured by PALS; these moments of heightened awareness are rare, here in Canada or anywhere else. My wish is that we never have them again, that ALS be eradicated from the earth, that nobody ever again be placed in the position of having to choose to die because of what this disease does to them. Yet while we are still here, still in this fight, still struggling to defeat this monster, we need them. I hate this disease.


  1. No wonder you hate this disease my dear son. It is a terrible future you face. I hate it too as it means a dreadful, fearful life ahead of you. You are my hero, you face things head on and seldom complain. I admire you and love you so much. Mom


    Simon Binner. I didn't want to believe he would actually do it. I am more surprised, in a way, that there was a TV program scheduled around it.

  3. Hi Richard,

    I'm writing to say thank you for taking the time to share your experiences with all of us. I've been following this page for a few weeks now, which has been a source of encouragement for me, but also a dose of reality and reminder of how brief and uncertain our lives are.

    I'm 32 now and have 3 kids, but when I was in high school, a close friend of mine's father was diagnosed with ALS. Watching him decline and the effect it had on his budding family was very difficult for all of us and left a lasting impact on me. I still remember playing basketball with him a year prior and it was just surreal how quickly things changed.

    Sometimes I fear getting the disease myself, or having to watch another loved one experience it. I question why anyone would deserve to suffer like you are. I am thankful to know that my friends father knew Christ, had hope in things beyond the suffering and joys of this life. It's been a reminder to me that He loves me (and everyone), no matter what we've done, and wants to be a part of our lives, wants to be close to us. Why else would God have given up his only son to die? He proved it to me and he's where I place my hope and fears and burdens now.

    Thank you again for sharing your life with us! I hope that you too can say with certainty that this will not be the end. My kids and I pray for you often, and I've shared a few things with them about your struggles and bravery and victories. Hopefully it will make them better people, more appreciative of each step they take in life and how they should live: not just for themselves, but for others.

    - Jon