Hal, I just read your heartwarming post over at
https://bt.irlbtc.com/view/155054.msg1643833#msg1643833, and due to restrictions on this forum, find myself unable to post a response on that thread. Thus, I am posting here on the newbie forum.
I hope, but do not expect, that you will eventually read this thread, if for no other than the inhuman effort required to create it.
I am familiar with your story, as I read it in the LessWrong forum a year ago or so. I was not familiar with your work on bitcoins, although in retrospect I could have taken a clue from your work in cryptography.
Hats off to you, sir, for you have helped through your continuing work with Open Source to make a better world.
As yourself, I am a member of the Stupid Club, of people diagnosed with ALS. As you do, I am relegated to communicating with the world with my eyes, in the form of a Tobii eye gaze tracker and Dasher. Also like yourself, I have and continue to contribute to Open Source Software, although it is in the form of Drupal, a content management system used to publish websites.
The proud father of two young children, I was surprised to learn just two years ago that my life expectancy had taken a plunge. Unlike many well-intentioned hopes in the thread you started, I understand the harsh prospects that you and I face, which is why I won't point to Stephen Hawking as inspiration; unless you're Stephen Hawking, there's little chance you'll survive the decade, and kudos to you if you do. I also won't urge you to rush out and try an experimental treatment; for you and I are not welcome to try them, as they don't want patients more than two years beyond diagnosis, for they don't want us throwing off their numbers with our likely deaths.
I wonder, though, about your thoughts about cryonics. I posted about my intention to seek cryonic preservation on a private ALS support group on Facebook, and was shocked by the angry responses I received, everything from I should trust in the eternal life promised by my Lord and savior, to I am stealing resources from the future and present generations by seeking immortality.
I have received a more welcome response from the cryonics and Open Source communities, but I did not expect the vitriol that I received from my fellow patients with a terminal illness. In retrospect, I guess that the one is self-selected, where the other is thrust onto us against our wills. It is perhaps, of course, wishful thinking, but I would have hoped for if not something along the lines of me too, where do I sign up, at least something a bit more supportive.
In any case, I do not expect to learn of your plans or even thoughts about cryonics, because I don't suspect you'll chance across this thread. But if you do, and you are planning for it, then I hope we'll meet on the other side. And if you, like me, have instead found yourself blindsided by the life insurance companies' unwillingness to chance on a terminally ill patient, then here is the link to the Society for Venturism
http://www.venturist.info/, the organization responsible for the cryonic preservation of Kim Suozzi, and the charity which has taken up my similar cause.
Stay strong,
Aaron Winborn
http://www.aaronwinborn.com/