One of the last things to go is speech in ALS (note: Usually, Bulbar ALS takes it first, but it kills the fastest.). My wife went from kind-of mumbling to gibberish in four months. I could only understand my name and it took talking to her over and over and over to get what words were. It was infuriating on both sides. She died at the end of that four month period.

With that said, there are "gaze" computers like TOBII by Dynavox that bridge this gap but they're still slow unless you're crazy-fast with your eye gaze settings. My wife tried lowering her gaze settings and it just caused problems for her at a certain point, but she always felt it was still extremely slow.

I welcome this technology, but it won't be approved for ALS usage by any insurance company or the VA unless it's a pilot program and you have a TRACH, which a lot of pALS do not want as there is no right to die in a lot of states... It's simply too expensive right now to think that this will even be a thing for ALS in the next five years.

They (insurance companies) won't even approve Radicava after you activate hospice because "it extends life" ....by 1-2 months. Medicare won't approve a power chair after hospice, some (most) VA sites won't approve Radicava due to cost (although they'll quote one study against many that says it does work).

I LOVE this tech, but this is a money thing and almost no one with ALS will see it in use. Its a god damn shame.

Edit: added the note about Bulbar ALS.