Does anyone have any experience with Bulbar ALS? We just found out my 53 y/o sister has had it for aprox. a year already. They may be getting a feeding tube (only if she agrees) and breating assistance. It sounds as though she isn't long for this world, but I wanted to see if anyone had any personal experiences or could recommend any support groups on the net. We live several hundred miles apart and it isn't possible to be around to help my brother-in-law take care of her. Thanks in advance.

alsa.org is the als website

try the local als organization for a list of support groups.

i like to joke around alot on this website but i can't find humor in this...sorry guy, but your sister isn't going to get better. prepare yourself, take care of yourself and get ready to support your family.

Thanks Dan. We know how serious it is and that it is a one way ticket - just curious to see if anyone else had experienced it up close and personal.