I'm not sure if this is the right forum for my question, so please forgive me if it is out of place. My husband was diagnosed with ALS in Sept 2011 with onset in his right leg. He has told me that he doesn't want a feeding tube or breathing apparatus if it comes to that. I think that he believes if he refuses these things that he will accelerate his end of life and the game will be over. My concern is that this will make for a very unpleasant and prolonged end of life. Does anyone here know what the prognosis is for a pALS who refuses this rather standard assistance? Of course, I understand that no one knows definitely and that each person's progression is unique. Any info that you can provide will be helpful to me in encouraging my husband to choose to live fully for as long as possible, maybe until a cure or significant treatment is found. I pray for the best and prepare for the worst.

I hope that this question does not upset anyone. I hate to ask it, yet I would like to know.

Are any of you opting not to have your care managed by an ALS Clinic? What do you do instead?