Tuesday, 9 April 2013

Now I Know

It's been two years since I began showing symptoms of ALS; it's probably time for an update with a bit of retrospective. About two years ago I was out for a walk with two of my daughters. My granddaughter was in her buggy and her mother, my middle daughter, was pushing her along as we strolled the sidewalk in an easy breeze under a clear spring sky. I stumbled and fell. It wasn't the first time I had fallen in my life but this was a solid, substantial fall from which I could not recover. I slammed into the sidewalk, very nearly taking the buggy with me.

That was when I really began to notice that I was not as strong as I once was. I have had a bad left knee for many years. In fact I had arthroscopic surgery on it only a few years before this all started. I was used to that knee buckling. In the past I could always catch myself with my right leg. Now I noticed that my right leg was no longer strong enough to hold me up when my left gave way. I attributed this to getting older; little did I know.

Over the next few months I fell a couple of other times, always attributing it to a bad knee. As spring turned into summer I found myself unable to walk as far as I had in the past, and less able to stand for long periods of time. I found that when standing I needed to sit, and when I sat I went down quickly. I attributed this to being out of shape; little did I know.

I went sailing for the summer, something I have done for more than the last decade in varying vacational durations. While sailing I found it harder to stand for long days at the helm and had to spend more time sitting. When taking the motor off the back of the sailboat, I fell and the motor fell on top of me. I had a compression fracture in my spine and was in pretty bad shape. I attributed the accident to being overweight; little did I know.

I spent a few days in my bed on the boat and managed to get into good enough shape to head out. As I headed down Tribune Channel from Kwatsi Bay in the Broughton Archipelago, I hit a submerged log hard enough that it severely damaged my boat. I fell again and it hurt. From then on I found myself having more and more difficulty walking, doing stairs or standing. I attributed this to a back injury; little did I know.

Finally in the fall of 2012, almost 20 months after that first tumble on the sidewalk, I fell hard in the sidewalk at Costco. I decided to go into Emergency, as suggested by my GP, and seek help. That's when I found out I had ALS. My diagnosis was delivered to me on November 23, 2012. Now I knew.

It's been two full years since that first fall on the sidewalk; my condition has continued to decline. I have lost about 80% of my ability in my legs. I am beginning to feel that weakness again, only this time it is in my arms. It hurts to lift myself up and down out of my chair, something that used to be difficult but not painful. I'm getting clumsy, knocking over glasses or cups of coffee, banging my hands on doors and other furniture. It's not major; it's minor, miniscule, inconvenient, a small change. This is not getting older, this is not being overweight. There is no injury or accident to blame. This is ALS.

Now I know.


  1. I remember us walking back to the boats from the pub one night in Horseshoe Bay. You fell. We attributed it to you being drunk. We were right, but little did we know.

  2. Apparently drinking makes things worse when it comes to muscle strength and coordination. Who'd a thunk it?!?

  3. Richard, our scenarios sound very similar. I too had a major fall while at work, and chose to go to the Emergency for my diagnosis to follow the very next day.
    My symptoms started out as cramping in my hands and back. My calves would charlie horse at night while sleeping. I too attributed all of the things that were happening to me being over weight, out of shape, getting older. I sought help in identifying the cause about 4 years ago, and there was no diagnosis at that point.
    December 14, 2012, alone at the hospital, the doctors told me I was dying. I am NOT dying, I am living. Now I know.

    Thank you for sharing your story.

  4. It's a very consistent story from what I hear. Most PALS think it's something else until well down the road. On the other hand, since you cannot treat ALS, or at least not much, does it matter when you find out? The only real difference for me is now I know. That helps, but not much.