Thursday, April 1, 2010

Then the realization sets in

This is a follow up post to Tuesday's article on "the slide." If you have followed my posts over the last seven months, you noticed that I mention "the slide" often. "The slide" is always a concern, because you never know how far you will come back (recover) afterwards. In this post, I want to discuss the realization that sets in after you recover. That realization is another wake-up call.

When you feel yourself coming out of a "slide," you cannot believe how good and strong you feel. The muscles are working better and everything seems so much easier once again. Standing up from a chair, performing your exercises, or just standing in the kitchen as you prepare lunch feels great. You had forgotten how nice it was not to struggle. Your mood is 100% better and life begins to settle back into its normal routine. I call it the plateau or the "life is good" stage.

Then you try to do something that was routine only a few days ago and you realize that you lost something in "the slide;" something that might not ever come back again. One or more muscle groups are just a little weaker than before. It is not that noticeable because the difference is only marginal, but weaker it is.

I liken it to putting a jigsaw puzzle together for the second or third time. Then, when you are almost finished you notice a piece is missing. The puzzle is still the same puzzle, yet it is now different … it is incomplete. You search for the piece, but you cannot find it. The piece is lost forever and the puzzle will never be the same again.

Like the puzzle, once that muscle or motor neuron is dead, your body will never quite be the same. You learn to compensate for the weakened state and, over time, you forget that not very long ago you were still able to use that particular muscle. 

Life goes on … until the next "slide."


  1. Yet another example of my own experiences. The realization that I am now weaker and, again, have to adapt to the change.

    I think the story of Arm Wrestling for Food in one of your other posts illustrates the slide and the realization in more than the physical effects. There is also the emotional and psychological effects that go with the loss of physical abilities. With each change there may be some depression. There is the anxiety over "what's next?" The question arises whether I can adapt to the change, and how.

    No matter what the change, or how severe, we must keep a positive attitude and adapt. We must stay as active as we can. The alternative is to recede into an abyss, locking yourself away from everyone, and that is not good for anyone.

  2. Right on, Stan!

    Thanks again for your comments.

    You never see anything written in the medical reports or research about the mental and emotional impact of KD on the person and the family. As you can tell, much of what I write about in this blog is the emotional side of living with the disease.


Please feel free to comment. By taking a moment to share your thoughts you add much to these articles. The articles then become more than just something I said or believe. In addition, by adding a comment, you might just be helping the next reader by sharing your opinion, experience, or a helpful tip. You can comment below or by sending me an email. I look forward to hearing from you.