Friday, November 7, 2014


I've always found it a little odd that when we talk about ALS in a patient, we talk about how the disease has "progressed." The word progress may simply be defined as "moving forward," but "moving forward" is only ever used in a positive manner. I suppose my confusion is caused by using vocabulary with positive connotations when we're talking of something so devastating. To talk of how ALS is progressing feels like saying "let's see how well ALS is doing."

Then again, I suppose that's exactly what we are saying.

My ALS has progressed. My ALS is doing well.

It is actually quite difficult to notice progression on a day to day basis. Sometimes, there's no perceptible change on a week to week basis, but I can definitely see and feel progress every month.

I find it much harder to speak. Forming words feels like I've got a dozen marshmallows in my mouth. My tongue, another muscle at the mercy of ALS, simply has a much harder time forming the sounds that make up words. Combine that with the fact my lungs only hold 42% of the volume of air they should, and you can imagine the trajectory my quality of speech is on.

My feet are slower, and coordinating their movement takes a lot more mental horsepower. It won't be too long before some serious Jedi mind tricks will be required to make them move.

My back and neck are weaker. I find that my spine slowly bends sideways when I sit in an upright position, as if the strength in my back muscles is fading and unbalanced. When I sit upright, I find it difficult to keep my head up.

My arms, already the weakest, most atrophied part of my body, have had a noticeable drop in strength, and making muscles contract takes similar mental effort as with my feet.

I feel like I've lost a little bit of weight. That's a big red flag for any ALS patient. I wish I could tell you exactly how much I weigh, but stepping on to a set of scales presents its own set of problems. That's right; raising my foot off the floor to step on bathroom scales is too hazardous to attempt.


  1. Keep the blog coming Tony. This is important stuff which needs to be read.

  2. hi Tony
    good win for the bhoys against the dons R.D. showing passion

  3. Keep up the blog Tony....there's many people out there that reads this but don't comment...including me until now.

  4. Franny, Bertie, Mick, sftb, edward , Martin & me all suggest that more choons. Put some of gerrys stuff up. But never stoptelling us about you. Dad

  5. Hi Tony

    Was at Celtic Park last night, but not as we know it. There was a healthy Celtic representation in the crowd with chat about our 'usual seats', good chat with the more traditional Tartan Army. It's a great venue for any big game.

    Big game next week against Salzburg. They are a good team but I think we're getting it together.

    Take care, Paul.

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