Tara, I also strongly suggest registereing with ALSA and the MDA, the MDA will provide up to 2000.00 towards a wheelchair and a speech augmentation device, a one time benefit. There are also "loaner" closets, where equipment can be provided to you, free of charge- based on availability. There is also an organization called Extra hands for ALS .
http://www.extrahands.org/ They offer up to 2 hours weekly of volunteer time, non medical, for things like the lawn, groceries, cleaning... I haven't used them but they appear to be a wonderful organization. Also, most senior centers offer assistance with navigating the complex medicare enviroment. (You don't have to be a senior to get this free assistance) They can tell you which part to elect so that you have prescription coverage. The expensive medication you are referring to is Rilutek, it is appx 1000 a month, but I know one of the Medicare supplements covers it, just don't know which one. We declined the medicare supplements because it was expensive and I have private insurance. And keep posting here, everyone has tips/tricks for pretty much everything.... they will be glad to share the benefit of their experience with you.
Andrea wife of Pals Jim