Ugh. Deepest sympathies.

Your situation, and your reaction to it, highlight a great advantage of working within a knowledge profession - of identifying as what the LW community calls "rationalists". When learning about something like that, you can make plans to be not just a passive sufferer of the disease, but a researcher of it from the inside, actively helping in the fight against it.

You can plan to learn all you can about the causes and progression of the disease, and be prepared for your losses as they happen. You can plan to investigate related areas - you mentioned voice synthesis and Brain-Computer Interfaces also come to mind as a field that's been moving along lately; still quite slow from what I've seen, but improving. If you can use BCI to play a video game, it's not such a big stretch to think of it providing control of, say, a virtual avatar - the name "Second Life" takes an altogether different meaning there. Being a software developer would, at any rate, definitely be handy in that situation.

I didn't know about voice banking; that's a fascinating idea, with all sorts of interesting implications (would one want to record non-verbal things like laughter; is there some way to program voice synthesis for singing, etc.). Can you maybe post a link to whoever provides the free service you mentioned ? Especially if they can use financial support.

Best wishes.