The end is near. I feel it. I cannot gauge exactly when, and certainly not the day, but all the signs point to diminished physical capabilities on all fronts, especially breathing. Hands and arms have weakened and become stiff. Legs are stiff and slow. Speech requires much more effort. I have to be careful when eating and swallowing.
Respiratory onset ALS differs from typical ALS where hands and arms, legs and feet may be affected initially, then swallowing and speech (sometimes those come first), but if someone lives long enough with ALS the progression covers more territory so other symptoms appear.
Breathing difficulty was my first notable symptom and remains the worst. I need the ventilator all night and most of the day.
Neurologists use an ALS assessment score to watch typical symptoms and to determine life expectancy. I like that one because it weighs slightly more to respiratory onset and should be more accurate
A score of 48 indicates a 90-percent chance of living for nine months. My own assessment has me in lower double digits. Nearly six months ago my neurologist predicted December.
December is tomorrow.
My goal is to beat the odds. To me, anything after December 1st is free money, living on borrowed time (without having to pay back anything).
Time will tell. It always does.