[CHRISTIE L. FAIRCHILD]

Be sure to give them reading resources! The more one knows the less frightening it is. I had to find my own resources, and by accident, stumbled across the ALS book series available free from the ALSA. My ex-neurologist didn’t, or wouldn’t, answer my initial question”what can i expect?”, as well as other basic questions i had. Instead he told us to rent and watch the Steve Gleason movie, which was horrifying,  I am fortunate in having the support of my very small, rural community and they’ve organized themselves into my Care Team, mostly doing tube feedings, which gives my husband a 1 hour break twice a day. And don’t forget Caregivers – they need support, too.

ALSO GET THEM LINED OUT WITH LOCAL RESOURCES – medical, physical, emotional and social.

[CHRISTIE L. FAIRCHILD]

I too am interested but don’t know where to start either. It seems like there are these laws intended to help but unless you are connected with the process and where to find the treatments, its just a hopes up but nowhere to go ending… very disappointing to say the least.