Friday, 19 April 2013

Cognitive Function

I have noticed a change in my the way my brain works, especially over the last year or so. I forget more things. I say things I don't mean to say. My "filters" are failing me, not that mine were all that good to begin with. I had originally attributed some of this change to stress in my life, with the impact of my divorce and then the impact of my diagnosis, to acting out and reacting to what was happening to me. Then I started doing some research around ALS and cognitive change.

In the past, medical opinion has been that ALS does not impact your mental or intellectual state; emotional state is a whole different ball game, it hits big in that park. Newer research suggests that at least half of all ALS patients experience some form of cognitive change, primarily in what is known as executive dysfunction as well as an occurrence of a mild memory loss. It's another invisible symptom.

Mild memory loss is easy to understand. It's another way that ALS is the great imposter. As you age, you begin to experience memory loss; we all do. The reality for me is that I have never had any issues with memory; in fact I have always had a very good memory, particularly for things like phone numbers and addresses. Of late, however, I find myself having more and more difficulty with memory. I find myself relying on technology to help with some of it, where my phone remembers numbers for me. I take more notes and try to keep more organized. Sure, I still have a good memory, but I notice a change. It's not what it used to be.

The executive dysfunction part is tougher to explain. The term refers to a set of cognitive abilities that control and regulate things like goal and outcome-directed behaviour. They include the ability to initiate and stop actions, to monitor and change behaviour as needed, and to plan future behaviour when faced with changing circumstances or unusual events. Verbal impulse control is an executive function.

I have always had a quick tongue and over the years my inability to control it has gotten me into more than one scrape. It would be fair to say that I have historically lacked in the area of verbal discretion and vocal impulse control. I can remember as a child my Dad telling me to "think before you speak". He was less than successful in his admonitions.

Over the last six months I have noticed more and more that I will say things without seeming to have the ability to stop myself and without understanding the potential impact of some of those things. I don't mean to say some of these things, or perhaps I do, I am no longer certain. It's as if my filters are getting less and less capable as time goes by. By the time I realize what I am saying, it's out and more importantly I don't even know it's out. I am not sure how much of this is because I no longer give a damn or how much of it is true cognitive dysfunction.

This change is not in the area of intellectual content; I am still as smart as I ever was, if I ever was. This change is more in the area of emotional content. It's embarrassing. I will say something and hours later I will wonder why the heck I said it. Even worse, I will realize hours later that I said something inappropriate but for the life of me I cannot remember who I said it to or what it was that I said. All I have is the vague notion that I said something wrong. I have noticed this has worsened over the last few months.

Perhaps the most terrible part of this is that, like the muscle loss, I can see it and yet I cannot do a thing about it. Intellectually I can tell it is happening, understand what is happening, see what it happening, yet physically I can do almost nothing about it. Nor can I change its progression; it will get worse. I will lose more.

Perhaps I'll stick to writing and stop talking. It's safer.


  1. Oh, we still want you to talk to us - you just need to come with a warning label - perhaps a printed T-shirt?

  2. You are still as smart as you always were which is pretty darned smart.
    If you are "out of control" with your speaking we all understand it is another thing your ALS is stealing from you.
    I love you no matter what you say and I am sure everyone else will too.

  3. Apparently I need to come with a warning label. "May appear intelligent. Please be prepared for stupid."