How Long?

I'm thinking a lot about "how long" these days; not so much about how long I will live, there are too many variables for that, but "how long" about other things. For example, this morning I was going to go to the toilet, but I had a heck of a lot of trouble pulling my underwear off. It's getting near impossible. I wondered how long it would be until I couldn't do it at all. That's the kind of "how long" that dominates my ALS thinking these days.

Yesterday I found that another ability had been lost to me. For some time now I have been having more and more difficulty transferring myself from my manual chair to my bed using the transfer board. I've taken to using the sling and lift more and more. When I tried it yesterday, using the transfer board, I couldn't do it at all. The uphill slope was just too much for me. I can do it if someone helps me, like David did so much of on our road trip. Alone, I cannot do it at all.

I wonder how long I will be able to drive. It's already near impossible for me to get into the truck without help, but there are a couple of workarounds I am working on. Regardless, getting into the truck is only half the battle. I know that driving is still possible for me, but I can see a difference in how things are going. I am getting worried, wondering when that difference will be such that I truly hang up my keys.

What about cooking? How long will I be able to cook my own meals? Right now I can do a pretty decent job of it, as long as I take my time. It is, however, getting tougher and tougher to do all that is needed to make a decent meal. It is especially difficult first thing in the day, when I am exhausted from getting dressed. So how long will it be until I have someone help me make breakfast? Not long, I think.

Speaking of getting dressed, I am already allowing Home Care to help me dress. It's a question of energy usage. Yet again I ask myself, is this the end of it? Have I reached that "how long" point? When will I no longer be able to dress myself at all? There will come a day, sooner that I would like.

Those are the endpoints I worry about these days. I am certain I will die; when doesn't matter. I am uncertain if I will ever lose my ability to eat. Breathing problems might get me first, or I might die from a heart attack. You never know. But I know that, at some point, my arms will grow so weak that feeding myself will be a challenge. How long will that be?