Nan Cyclist,
That is a tough one to deal with. There is a lot more to be learned about these conditions, and the people researching them do not understand our haste for them to find ways to help. When a family is hard hit like yours the urgency is made much more real, especially with ALS.

I guess you probably know that there is an active ALS group here at Neurotalk.....

To start a new thread just look towards the top of the page that lists the PD forum threads, just below the three sub-forums, on the left there is a button for new thread, click it and you are there.....

Share as much love as you can, it is the thing that really does help.

Best Wishes
Lindy