Early Start

There are things they tell you about having ALS that are absolutely solid, completely true and provable. There are things where they suggest that something might happen, that there are possibilities and probabilities. Then there are the things they either don't tell you, or tell you in whispered tones, or use words like "typically" or "in most cases".

With ALS, the first category of things they tell you doesn't happen all that much; the medical community just doesn't know all that much about ALS. The second category is stronger as much of what doctors do know about ALS is through case histories. The last category, the "typically" category, is where the bulk of things seem to happen. This is simply because each ALS case, beyond the broad parameters and some commonalities, is unique and unusual. That's why this disease is so hard to classify, treat, or cure.

One of the things they tell you is that, in most cases, ALS patients retain control of their bodily functions. In other words you are supposed to have control over your sphincter right up until the end. What they don't say is that bodily function involves a lot more than just that one muscle. Bodily function is an ensemble cast, not a single movie star; it takes a lot more than just that one muscle to manage the whole show.

Last night, or rather this morning, is a good example of this. Last night I ate something that disagreed with me; it might have been the steak, but I doubt it; it might have been the grilled vegetables, but I doubt it; it might have been the piece of Ponderosa Cake, but I doubt it. No, all my money is on the bowl of cherries I had later in the evening, my treat for the night. By the time I went to bed, the nasty contents of my stomach were already doing their dirty work. I rolled my way into the bathroom, transferred onto the toilet, wiggled out of my jeans and underwear, and eliminated the beast within me, or so I thought. Then I went to bed.

I awoke at 8:30 this morning feeling "uncomfortable". Now, when a normal person has an incident or some sort of discomfort where urgency is required, they get up and run for the toilet. For me, there is no get up and run. First I have to sit vertical, then I have to transfer to the wheelchair, then I have to roll to the bathroom, then I have to transfer to the toilet, then I have to wiggle out of my underwear. Then, finally, after what can be a rather long time when you are in a hurry, I can do what nature calls me to do.

This morning at 8:30 AM, there was urgency. I sat up, feeling that urgency. Then, to my chagrin and dismay, I discovered that it was simply too late. So I got up and had a shower, ripped the sheets off my bed, and started a load of laundry, with plenty of bleach. Fortunately my mattress is fine; at least something didn't go all that bad this morning.