Hi folks -
What wasn't said, but possibly implied, with my original comments is that potential medical solutions present you with having to make a choice. And once you get beyond coming up with all the pluses and minuses, you still have a choice to make.
Pretty simple actually.
The pluses and minuses might be real barnburners in their implications, but at the end of the day, you still get to choose.
By comparison ... my stuff is ultimately fatal, its behavior is well known, its timeline trajectory is well documented, I will predecease my wife and brothers, and my participation in trials with experimental drugs is to quite frankly help out the next generation of sufferers, as my survival is already spoken for. Boy, that sounded dark. Time for Metallica's S&M!
On one hand, I would probably give up my left tit to be considering your choices.
And I get it, what you are facing ain't exactly biscuits and gravy.
See how it goes. I appreciate your sharing what's going on with you, because there are not many outlets available to do that anonymously. I don't think you are seeking advice from a group that couldn't agree on a power cord if you paid it to.
Sometimes, you just have to vent to the wind.
Good luck.
Rich