A more recent update: Bitcoin and me (Hal Finney). Excerpt:

My symptoms were mild at first and I continued to work, but fatigue and voice problems forced me to retire in early 2011. Since then the disease has continued its inexorable progression.

Today, I am essentially paralyzed. I am fed through a tube, and my breathing is assisted through another tube. I operate the computer using a commercial eyetracker system. It also has a speech synthesizer, so this is my voice now. I spend all day in my power wheelchair. I worked up an interface using an arduino so that I can adjust my wheelchair's position using my eyes.

It has been an adjustment, but my life is not too bad. I can still read, listen to music, and watch TV and movies. I recently discovered that I can even write code. It's very slow, probably 50 times slower than I was before. But I still love programming and it gives me goals. Currently I'm working on something Mike Hearn suggested, using the security features of modern processors, designed to support "Trusted Computing", to harden Bitcoin wallets. It's almost ready to release. I just have to do the documentation.

Hal Finney was in the same fraternity I was in at Caltech - Page House. He was a couple doors down the hall. Caltech was full of smart guys, but Hal is a standout smart guy among them. There was once an informal contest with MIT to write a Gomoku game playing program, with of course a playoff. Hal wrote the whole program in a weekend and it trashed MIT's program.

Hal was a good friend to everyone, even immature jerks like I was (and hope I am no longer). He'd stuff as many as would fit into his VW bug and take us all out to Tommy's at 3AM for burgers.

I am deeply shocked by this development. Hal, my best wishes go to you and your family.

Wow Hal. You don't post often, but when you do it's a doozy! And that is amazing, that 90% choose to die. I'm glad you won't, and now I'm more impressed that Hawking didn't.

*hug*

I did not experience sadness, sympathy, grief, catharsis, or elsewise wistful or sad emotion on reading this. My reaction, whole and unbridled, was: Hal Finney is a badass.

I'd try to get proficient with the tools before your body degrades too much, configuring how you would want them (perhaps getting to know the internals if they are open source) while it is still easy to make the transition less painful. I'd also try and develop a very strong ability to mentally model code and do maths, rather than using pen and paper for notes or a laptop.

It might also be worth keeping an eye on neural plasiticity research, to see if there is anything that can help your brain reconfigure after lots of its motor functions become redundant.

Hi, Hal.

Thanks so much for posting this. It was moving and inspirational.

I don't know if you'll remember me, but I was Alcor's Membership Administrator at the time that you signed up, and I met you when I came to your home and helped you complete the paperwork. I could tell that you were a warm, thoughful, and intelligent man.

I have since read some of your writing on the Internet. The old Extropians list, for example. Clearly like many of the folks involved with this blog and previous efforts, you devote a lot of your time to earnestly thinking.

When I think about Stephen Hawking and all of his success despite coping with ALS, and when I consider your outlook facing it anew, I can't help but wonder if there is a strong correlation between self-image and survival. That is to say, when you (and he) are faced with the prospect of losing control of most of your body, you don't think of it as the end. If you can still think, and communicate, you imagine a potentially good life. I bet that's not very common.

I feel the same way. Though I love the things my body can do, I think of myself as primarily a mind first, and a body second. As long as my mind is working, and I'm not in great pain, I hope I will want to carry on, and I hope my family will feel the same.

Best wishes to you and to your family.

Derek Ryan

I just wanted to say how much respect I have for the way you're facing this directly and openly and continuing to exhibit the beautiful qualities that have made you a valued member of OB&LW as well as other online communities that I'm a part of (often as a lurker).

I hope you continue to post here and at OB and elsewhere and keep us apprised of your health and any other thoughts you'd care to share.

My prayers are with you, which is to say, I hope that the brilliant men and women in the science trenches, who will certainly conquer this and other illnesses given enough time, do so in time to be of some help to you.

That's awful, really awful. Your take on the situation is really inspirational though. In fact -- I apologize in advance for swearing -- but the only thing I can think of when reading your response to your diagnosis is: Fuck yes! Fight it out! Maybe you can be a proponent for convincing others to have the same courage to choose life rather than death.

Sad news, but a very brave and positive response. If I ever end up in a comparable situation I wish I can handle it with this level of poise.

It is worth noting that people are far more flexible in what constitutes a life worth living than most normals believe. Brickman, Coates and Janoff-Bullman (1978) famously argued that individuals who had become paraplegic or quadriplegic within the previous year reported only slightly lower levels of life satisfaction than healthy individuals (and lottery winners also converged on their setpoint). This is particularly interesting given that many people often say they would rather be dead than quadriplegic. They are likely wrong.

It might be a good idea not just to train using tools such as BCI as a preparatory stage, but also to ensure that they get integrated with the action systems of your brain. There is some evidence that people with lock-in syndrome or similar conditions have a hard time learning to use them if they get them after their condition worsened, while people who get them before can use them better. The reason is (by some researchers) believed to be linked with the ability to see oneself as an agent - we normally reinforce this every waking moment, but if you can't use your agency to affect the world the agency might atrophy. Right now merely a hypothesis, but it might be a reason to attempt to supercharge your agency and extend it to an exoself.

I'm very sorry to hear of your diagnosis. I admire the spirit with which you face your prospects, and wish you the best of success.

I watched my friend and next door neighbor go through this. One of his concerns when he first told me of his diagnosis, was that, as it was affecting his speech, that I would think he was intoxicated. I had noticed, and was concerned, but intoxication never crossed my mind.

One of the biggest challenges for him and his family, I think was the pace of the changes. By contrast, my dad had Parkinsons, and I suffer from a progressive peripheral neurological condition called CMT, and the much slower pace of advancement allows for planning and adaptation.

So I would agree with the suggestions to learn to investigate and learn and practice with your assistive tools early, before you really need them.

One tool to consider, to help you with mobility and delay the need to use a wheelchair, is the Segway. I have been using one for almost a year-and-a-half, and it has given me my life back. I get more exercise, and am physically stronger as a result of using it -- in contrast to the alternatives, which lead to muscle wasting and weakness. I know other people with ALS... (read more)

Looks like some therapies are starting to catch up with ALS

http://nocamels.com/2012/07/rabbi-with-als-able-to-walk-and-talk-again-after-new-treatment/

Hal-- you were an inspiration to me when I was younger, and you continue to be an inspiration today.

Thank you.

I don't know what to say.

This really sucks. But the attitude toward it you display in this post is inspiring.

Good luck!

Inspiring words. Something I wish I would be able to write if such a fate ever befell me. I didn't really know who you were before, but now, you're among those I'd like to emulate whenever life gets hard. Best of luck with your life. Keep fighting.

You should keep updated on brain-computer interfaces. Perhaps basic control over the computer (replacement for mouse/keyboard) will get very good in the near future.

I read a bit about treatments for ALS. Didn't see any mention of direct electronic stimulation of muscles. I would think that would be useful in keeping the muscles alive.

Note that what you would want would be a real interferential stim machine, using high voltage, costing a few thousand dollars, not usually allowed to be sold to patients in the US (but there are ways of getting one). Not the cheap TENS units advertised on TV.

I am quite impressed with the positive response & helpful comments that have come about from your post. I wanted to throw in my own two cents worth for an activity that is possible while having ALS that has potential in the trans-humanist arena.

For the past year I have been a member of the OpenSource EEG group, and educating myself on Neurofeedback. I have also been blogging on my educational experiences, mostly just for myself. Some of the experiences I have had doing Neurofeedback have been very striking. These experiences typically occur duri... (read more)

I feel I have to mention (since no-one else has) that the title of Hal's post is probably a play on the title of Robert Silverberg's novel Dying Inside.

I have a question, ideally for Hal Finney himself, if he is still able to read this and post a response. If not, does anyone else know his current situation? I had just read on http://www.facebook.com/faithfreegriefsupport a post by Norma Jean Rombalski who had just been diagnosed with ALS and had written:

Norma Jean Rombalski I just found you here, but I think an independent website is a great idea. I'd love to have a part dedicated to those living with terminal illness. I was just diagnosed with ALS last month and the support groups I've found locally a

One of the most inspiring talks I've ever heard (even though it's outside my area) was Melody Moore talking about her work integrating BCI with ALS patients in 2004 (she's still at it). Her brain lab at Georgia Tech would be worth checking out. http://www.cc.gatech.edu/~melody/

With mechanical respiration, survival with ALS can be indefinitely extended.

What a great opportunity to start your transhuman journey (that is if you indeed are a transhumanist). Admittedly these are not the circumstances you or anyone would have chosen but here we are nonetheless.

If you decide to document your process then I look forward to watching your progression out of organic humanity. I think it is people like you who have both the impetus and the knowledge to really show how transhuman technology can be a bolster to our society.

Cheers!

I'm sure you've came across this already, but in case you haven't, Andy Schwartz at Pitt is one of the pioneering researchers in neural prosthetics: http://schwartzlab.neurobio.pitt.edu/. Might be worth shooting him an email.

Good luck man, I admire the strong mind you must have to approach the situation the way you are.

This is very inspiring for me! It makes me appreciate having such a mobile and agile body.

Have you seen Aubrey De Grey's TEDTalks speech? Or looked up organ printing, or other life-extension related technologies speculated to be available within ten or twenty years?

I'm not entirely sure how they could be applied to ALS patients, but it certainly would offer a chance of not just living longer, but maybe some day gaining back some function.

By choosing death, you will be forfeiting any chance of being helped by these potential new technologies. By choosing ... (read more)

Well Hal, I was checking Wikipedia to see if you had an article there yet, and sure enough, there it was. I wasn't expecting what was in it though, and it came as a terrible surprise. Best of luck in fighting this, to you and your family.

Al

My commiserations, to the extent that you seem to need them.

I'd like to imagine I'd have a similar reaction, this is an inspiring post. All the best.

I'm really sorry to hear that. But as long as you're conscious as aware, everybody here will be happy to hear from you!

I'm saddened to hear this, and inspired by how well, consistently and optimistically you're approaching the future.

How old are you and at what age does this disease usually begin? I wish you all the best!

😢

Mr Hal Finney, the world is forever thankfull for the great opportunity you brought us.

Hope you're making heaven's bitcoin 2 from up there ; )

Thanks for your services, Finney. We got it from here.

Abs.

Campos.

You have been away for many years, we have always missed you and saluted you!