A lot of people, including myself, are filled with horror at the prospect of being immobilized in a wheelchair, having a hole poked in their trachea, breathing with one of those noisy ventilators, totally dependent on others, unable to move or talk, and suffering from bed sores.
So, after my diagnosis, I went through my copy of Mitsumoto's "patients and families" guide to ALS, emphatically making crossing-out marks and writing "NO!" next to various procedures.
But now my thinking has changed, and my advanced health care directive will be simple:
In the event that I am unable to signal my preference, e.g. due to unconsciousness, in an emergency situation where the decision must be made urgently, my lovely wife can authorize any medical procedure that she wants to.
My reasoning is that I have been able to cope with my loss of functionality to date, after appropriate grieving. I'm still happy and thankful. If I gradually lose functionality and wind up immobile in a wheelchair and using a ventilator, I will either cope and find it worthwhile, not not.
If I decide on "or not" -- and this is a major bulwark of my sanity and what many of you perceive as 'courage' -- then I can choose to end my life. No one has the right to deny me that, no matter what they think. It's an inalienable right, regardless of whether our society recognizes it. I can issue my declaration of independence any time I like. Save your rhetoric about the suffering it inflicts on those left behind. I do things well, unlike so many of my fellow humans. I do them well and I would do this well too.
Anyway, since I can choose to get out of any medical support that I judge makes life no longer worth living, I am not so afraid of getting support from certain technologies.
I will, though, have to carefully monitor my own decline and be aware of the divide between when I still have the capacity to end my own life, and when I would need help. I'm not sure that I can rely on other people to help me, nor would I necessarily want to subject someone else to that.
I have been marveling at the progress of medical science, and smugly predicting that I'll be around for the treatment or cure that I think may come in five to 10 years. If I do believe that, then I should put my money where my mouth is, so to speak, and be willing to accept procedures that might prolong my life long enough to see that day. The day, of course, that George W. Bush is dragged out of the spider hole he and Michael Jackson are hiding in, on Neverland Ranch.