Hi Abbigaill,
I am sorry about your husband. My husband was diagnosed in April, 2010. His ALS has been very, very aggressive, too. Limb onset (left hand). His FVC (lung function) went from 125% in 1/10, 80% in 5/10, 50% in 8/10, 45% in 11/10 to 40% today. One year ago, he could walk, talk, use his hands and arms, breath and eat without trouble. Today, he can barely talk. He chokes often when eating (he won't give it up and start using his PEG, though). He cannot use arms, left hand and has limited use of his right hand. He can stand for short periods if helped up.
I've dealt with this by staying ahead of the game. I've had equipment in the house before we needed it, I haven't waited until we need it. Ask questions from forum members, your ALSA patient care coordinator, nurses, doctors and anyone else you can think of. Accept all help offered. Prepare for the worst, but know that doctors can be wrong. Prepare for the long haul.
My thoughts and prayers are with you. Missy