Neurologists use a number of assessment scales to determine ALS progression. Most include a list of multiple choice questions or graduated changes in progression and the score helps caregivers and patients determine how much time remains to the end.
Such assessments vary in accuracy, of course, because, well, things change. One of my neurologists says the end may come in December, give or take a few months. There are times when I feel I can go well beyond December. There are other times when I’m certain I’ll be breathing my last breath next week.
I think the end will come 100 days from today. December 1st.
Why such a specific date? Why not? My date fits my neurologist’s general prediction. 100 days seems like a nice, even, easily remembered number, with an obvious forward prediction. Not too far into the future, but not just a month away, either.
My guesstimate is as good as any unless I fall into the 10-percent group where the diagnosis of ALS is wrong and my disease actually is a different disease. I devoted some time to tracking down what are known as ALS mimics. Most of those are deadly versions of neurological disorders you would not wish upon people you don’t like.
What would you do if you knew you had only 100 days to go?