Saturday, October 23, 2004


It's been over nine months since I was diagnosed. I used to be concerned to know when I started to become disabled. I made my lovely wife pledge to tell me when my walk had noticably changed. Well, I can tell you that my walk has changed. And that it doesn't matter any more.

However, I did feel a bit of longing for innocence lost today. My son and I watched a video today with scenes from the summer of 2002. There is one bit where I tie his shoe. It's on tape. My hands just grab the laces and -- zip! These days, that operation would take more time. The good news is that I can still do it. And quite well. Just not as fast.

My left index finger, I notice in the last few weeks, doesn't extend as readily at the other digits on that hand. And so, while I recall starting this blog in December 2003 by typing with thumbs and forefingers as is my habit, these days I type with the middle finger on the left hand instead of the forefinger.

And this is still in the category of not bothering me. I wonder how I will feel when, some day, a disability completely prevents me from doing something I really care about?

Our family just took a walk around the block. Nine months into ALS and I am not only still walking, but walking in what probably looks like a normal way to other people. That's good news and a good trajectory. When I was first diagnosed I was worried about the Brasil Effect (body suddenly turns to jelly). That could anyway happen yet, but not when one extrapolates the current trend.

So I am confident that I will still be walking at my one year diagnosis anniversary, and walking quite well. For a dead man. And that speaks well of how long yours truly will be around. Which I intend to be a very long time. I'll be one of the people taking the first treatments that halt the progress of ALS. Then, I will get me a steel robot body, and come to your house to watch TV and slam a few brews. Ever had a drunk 800-pound robot to deal with?

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