- Joined
- Oct 20, 2019
- Messages
- 218
- Reason
- PALS
- Diagnosis
- 01/2020
- Country
- US
- State
- CA
- City
- Los Angeles
I am participating in a research study (through EverythingALS) where they do the ALSFRS survey every week and tell you your score. This has me thinking about this scoring model and I'm curious on opinions as to whether this thing is really useful, and how to tell, for instance, whether my handwriting has progressed from a '3' to a '2'. It's definitely become more challenging to write, as is keyboarding. I need a bigger pen, and my ability to write doesn't last long. And yet, in the beginning at least, with my gorilla grip, all the words are still legible, so I guess I'm still at 3 for that category? It's so strange knowing I'm progressing but staying on the same score. For dressing and hygiene, I'm self-sufficient except for cuff buttons and the very top button, so if I avoid dress shirts, I still get a 3!?! I guess this points out the silliness of the self-scoring nature of this thing. I think I'm obsessing on this in part because my still-high score gives me hope that I remain a slow progressor, even though certain things - like holding a glass of water and putting in my contact lenses - are undeniably becoming more challenging.