Recognizing Change

ALS is an incremental disease, a silently creeping monster that makes such small changes that you don't notice them, until you do. There are two ways that the changes are brought home to you. One is the "Aha" event, where you haven't done something in a while and you go to do it only to find you cannot. The other is the "ooohh" event, where you know things are changing but you think you can keep going, until one day something happens which makes it clear that the end of this is coming.

Today has a great example of each of these things.

The first is my shower. I had my bathroom modified to allow wheelchair access, including a roll-in shower with a built in shower bench. Since it's installation I have noticed that it has been getting more and more difficult to make the transfer to the shower seat. It's not that the seat is badly positioned or improperly installed. It's a simple function of weakening arms.

I've noticed the increasing difficulty but not really paid a lot of attention to it; the progression has been slow and I have been able to make it work so far. This morning, after getting in and having my shower, I tried to get out. The fact that the floor is wet and sloped to the drain means my wheelchair does not stand completely steady even when locked; it slides. Up until today I have simply pushed myself across and steadied the chair on my own.

Today was different. The slide seemed farther; the effort to stabilize the chair seemed more difficult. I tried once, twice, three and even four times. Finally, after much adjusting and effort, I made the transfer. The effort was so great that my arms were to tired to lift me onto my bed; I had to use the sling lift, something that has its own set of problems. I said "ooohh" in my mind, realizing that the change was becoming significant.

After getting dressed I went into the kitchen. There I noticed the handle of my grill pan. It's a small, rectangular frying pan with grill ridges in it; it's great for doing steaks and chops. The pan itself was in the dishwasher, having been used to make Seared Ahi Tuna for dinner last night. I tried to put the handle on the pan, only to discover that I can no longer do this with one hand.

Of course, most people can't do this with one hand. Up until now I could, even when guests or caregivers could not. I had strong hands. Now, after a couple of weeks of not using the pan, I found I could not simply use one hand to squeeze the handle enough to reattach it to the pan. It was an "aha" moment; the gap of time between the last time I did this and now has been just enough to take me over that ability edge.

That's the way ALS works. There are always changes. Sometimes you realize it only about half way through the change. You don't see the start; the increments are too small. Once you get far enough that you go "ooohh", you see it a lot more often. You know change is happening. Other times the gap between doing something is far enough apart that you find, suddenly, you can't do it anymore. Your mind goes "aha", along with several other expletives. You know change has happened.