Be proactive
My husband was diagnosed with ALS in December, 2007. It began as a slight difficulty in speaking and progressed to severe bulbar symptoms and weakening of the right side of the body. The well-known ALS Center at a famous medical center in our area had not heard about the Lithium study. Our older son sent us a link to the Italian study. He got it from a physician friend of his. While 'our' ALS Center had not heard about it, our own primary care physician visited with us and brought a colleague who is a neurologist and he HAD heard about it. They thought we should try it.
My husband has been on the Lithium as well as Rylatek since July of this year and we are hopeful. We did not want to wait for 'our' ALS Center to start 'their own clinical trial since those things take from eighteen months to two years and we may not have that much time.
Once 'our' ALS Center heard that we were "on" Lithium, they asked that we keep them posted and of course we have my husband's blood tests and EKGs as required, since Lithium has, like all drugs, side effects.
I pray for all of us ALS families and share your hopes, fears and dreams for a cure some day. After all, they once called Polio, Malaria, Smallpox, Tubercuosis, Diabetes, and so many other diseases untreatable and terminal.
The only good thing I can say about this illness is it give you time to find out who you are, how much you can take, and especially, who your true friends are and who are the fake friends who do not or cannot offer help.