If you have your office note, and you look up the instructions online for the version that was used, you guys could make your own updated estimate with the help of your old one -- if you feel like it. I read that someone remarked that Tom progressed quickly. That might be a way of making that progression clearer.
I thought of something I wanted to tell you about #2s (pooping). Before my first symptom of ALS, I had terrible constipation, tummy bloating and pain. Later, I saw a paper about PALS having gastric symptoms prior to first recognized ALS symptom -- just like me. I met with a gastroenterologist a couple months ago who said that it is a well-known fact that the muscles involved in peristalsis are also affected by ALS. The only solution he could propose was the Low FOD-MAP diet. I had followed that for more than half a year and I got heartily sick of it. So I ignored his suggestion. Fortunately, as my ALS became clearer, my tummy symptoms lessened gradually and now I'm 90% free of them (I guess that's a silver lining of sorts).
I wonder if someone would test a stool sample for you if you took one. I think a primary could order it.