Wednesday, 20 November 2013

I Am Living With ALS

It's been a year now, a year since the neurologist uttered the three letters to me that changed my life forever. A year ago today, I was diagnosed with ALS. I could still walk then. I didn't need the wheelchairs they insisted on using in the hospital. I did need my cane, and would still need it for a few weeks. After that, the wheelchair.

It was the first event of the day that really got me going. The night before I had been visited by the on-call neurologist. It was daytime now, and a hoard of doctors descended upon me before I had finished the meagre hospital breakfast, even before Dion brought me a Timmies. There were four of them, all deeply interested in my situation. Beware when doctors arrive in a herd; it spells trouble. After inspecting my legs carefully, plus asking me about a million questions, the departmental head of Neurology, along with the resident neurologist, plus a couple of other interns, informed me that I needed more tests.

The day itself was a blur of tests and machines. While still in the ER Ambulatory Chairs I was taken for an MRI, a full body MRI that took over 90 minutes, during which time I was firmly admonished to refrain from any motion lest the MRI image turn out fuzzy. My head refused with the expected fuzzy outcome. They did my head twice just to be sure.

After the MRI, I finally managed to get my Timmies, cold as it was by then. The nurse came and took about a litre of blood in about eight different vials. Then I was transferred upstairs to the neurology ward. There was a certain irony in my room placement; from the window I could see the roof of my apartment, a place I definitely would rather have been. On the plus side, Dion smuggled in some scotch for me, so at least I could have my evening sip before bed. When they eventually found out, the hospital staff was not impressed.

I don't remember much of the afternoon. There were more tests, the kind where they shove long needles into your body to see if your nerves work. I remember those; they hurt. Mostly there was waiting time, waiting to see what the results would be.

Then, while David and Elizabeth were visiting me after their work day, the resident neurologist came in to talk. She said we had to talk about my diagnosis; I said David and Elizabeth could stay. They were an incredible support to me, not just that day but for many days since. After a short preamble about my symptoms, she said "We think you have ALS."

On hearing the verdict, David slumped back into the wall and Elizabeth sat there, silent. I went into what I call my "business mode". The emotions would come, and they surely have come. But at that time I wanted the facts and figures.

"How sure are you?"

"About 90%. We have to do a few more tests to get more certain, but we are pretty sure."

"How often are you wrong?"

"Not very often. Less than 1% of the time. We haven't been wrong in a long time."

"How long do I have?"

"Probably about 36 months."

A lot more was asked and said, but that's the heart of the matter. I have ALS. It's been twelve months since that day. I am still living, still living with ALS. Nobody knows the number of their days, not even me, but I am fairly sure it will be longer than expected and shorter than hoped for. Here I am, living with ALS.


  1. The same day you were experiencing this, I made the decision to attend my first trivia night. I had no idea I was entering into a circle of people whom I would rapidly learn to call friends.

    Your words are so powerful. I had no idea that the man with a cane I would meet the following week (maybe two weeks?) had undergone such a radical life-altering experience. And I had no idea he would, through his actions, teach me to value every day we're given on this earth and how to face adversity. Very proud to know you.

    1. No fair, Dano. You're not supposed to make me cry. :) Very few are as lucky as I have been, blessed with wonderful friends and an amazing family.

    2. I have to admit I dont know a lot about ALS. I do know it is incureabe, but is there any medications, exercises or just as good positive attitude that may extend that time. I love the way you get out of bed and face the world every day and look on the living side.

    3. Freida, when you get a diagnosis of ALS it comes with the standard disclaimer. "This disease has no known cause, no cure and no significant treatment. It always ends in death. And if you get better, then you probably don't have ALS."

    4. I say that too, it's an attitude, "I am living with ALS" too. It's happening to
      my poor wife, that hurts the most.

    5. ALS is a diagnosis of exclusion once they have world are all other possible causes they fall back to ALS. There is no microbe or thing see under a microscope. That is why it took them three months to diagnosed me with ALS, ran all test. I was at the Cleveland clinic I just paid you on the back give you some paperwork and told you to contact your local ALS's Association for support.