My ALS Challenge

ALS is a disease that progressively 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. 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.

Why am I describing what ALS is again? I’ve spoke about it and made references to living with the disease. But it is a degenerative disease. There are no improvements, or hopes of getting better, only trying to maintain what functions one has for as long as possible. Until they are gone.

I was reminded of this last week when I had another fall.

The thing with falls is you just don’t know when they are going to happen. This time it was Sunday morning and my wife and I were having coffee at the kitchen island. I got up to show her something and, when returning to my seat, I fell. Surprisingly, I wasn’t as shocked. My reaction was ‘Oh no, not again’. Unfortunately, my right ankle did have some swelling. Nothing severe, but enough that I paused my virtual cross-Canada mobility ride for the week to recover.

I continued to go to my TIME program sessions at the Abilities Centre. I enjoy these sessions. The Tuesday session was okay, though I was a bit slower than usual. I was trying to listen to my body. When Thursday came, I was feeling tired. I debated taking my walker but decided to just use my cane as I usually do as there are supports when doing the exercises. I never thought about moving between stations though.

At the first station, which involves a step, my left side gave out. The supports I was holding on to prevented me from falling, but I struggled holding myself up. My arm strength just wasn’t what it was. I didn’t expect that. I caught my breath, and rested for the remainder of that station then went to move to the next.

As I started walking between stations with my cane, I realized, my right ankle wasn’t stable even though I was wearing my brace, my left leg was too weak and all I had was my cane. All of a sudden it hit me like a ton of bricks how helpless I felt standing there afraid to take a step for fear of falling again.

My superheroes then came to my rescue. The program instructors noticed my distress, even though I was trying to hold it back. One helped me sit down, discreetly gave me some tissues as I had tears rolling down my face and program supervisor sat with me, providing support and compassion, until I was able to compose myself.

There are other participants, and the other instructors adjusted to ensure all other participants were well cared for. But I will never forget how they treated me with dignity so I could deal with this difficult situation.

Why am I sharing this story? To let you know the great people and programs at the Abilities Centre and to remind everyone that sometimes, when you see someone in distress, a little care and compassion goes a long way.

So, as the band Chumbawamba says in their song Tubthumping, ‘I get knocked down, but I get up again…’

Being a fan of 70’s and 80’s alternative music, I also think of another song written by Iggy Pop written as ‘a simple celebration of life’ and covered by Siouxsie & The Banshees called ‘The Passenger’.

Let’s celebrate life. What could be more simple?