Dying Outside
A man goes in to see his doctor, and after some tests, the doctor says, “I’m sorry, but you have a fatal disease.”
Man: “That’s terrible! How long have I got?”
Doctor: “Ten.”
Man: “Ten? What kind of answer is that? Ten months? Ten years? Ten what?”
The doctor looks at his watch. “Nine.”
Recently I received some bad medical news (although not as bad as in the joke). Unfortunately I have been diagnosed with a fatal disease, Amyotrophic Lateral Sclerosis or ALS, sometimes called Lou Gehrig’s disease. ALS causes nerve damage, progressive muscle weakness and paralysis, and ultimately death. Patients lose the ability to talk, walk, move, eventually even to breathe, which is usually the end of life. This process generally takes about 2 to 5 years.
There are however two bright spots in this picture. The first is that ALS normally does not affect higher brain functions. I will retain my abilities to think and reason as usual. Even as my body is dying outside, I will remain alive inside.
The second relates to survival. Although ALS is generally described as a fatal disease, this is not quite true. It is only mostly fatal. When breathing begins to fail, ALS patients must make a choice. They have the option to either go onto invasive mechanical respiration, which involves a tracheotomy and breathing machine, or they can die in comfort. I was very surprised to learn that over 90% of ALS patients choose to die. And even among those who choose life, for the great majority this is an emergency decision made in the hospital during a medical respiratory crisis. In a few cases the patient will have made his wishes known in advance, but most of the time the procedure is done as part of the medical management of the situation, and then the ALS patient either lives with it or asks to have the machine disconnected so he can die. Probably fewer than 1% of ALS patients arrange to go onto ventilation when they are still in relatively good health, even though this provides the best odds for a successful transition.
With mechanical respiration, survival with ALS can be indefinitely extended. And the great majority of people living on respirators say that their quality of life is good and they are happy with their decision. (There may be a selection effect here.) It seems, then, that calling ALS a fatal disease is an oversimplification. ALS takes away your body, but it does not take away your mind, and if you are determined and fortunate, it does not have to take away your life.
There are a number of practical and financial obstacles to successfully surviving on a ventilator, foremost among them the great load on caregivers. No doubt this contributes to the high rates of choosing death. But it seems that much of the objection is philosophical. People are not happy about being kept alive by machines. And they assume that their quality of life would be poor, without the ability to move and participate in their usual activities. This is despite the fact that most people on respirators describe their quality of life as acceptable to good. As we have seen in other contexts, people are surprisingly poor predictors of how they will react to changed circumstances. This seems to be such a case, contributing to the high death rates for ALS patients.
I hope that when the time comes, I will choose life. ALS kills only motor neurons, which carry signals to the muscles. The senses are intact. And most patients retain at least some vestige of control over a few muscles, which with modern technology can offer a surprisingly effective mode of communication. Stephen Hawking, the world’s longest surviving ALS patient at over 40 years since diagnosis, is said to be able to type at ten words per minute by twitching a cheek muscle. I hope to be able to read, browse the net, and even participate in conversations by email and messaging. Voice synthesizers allow local communications, and I am making use of a free service for ALS patients which will create a synthetic model of my own natural voice, for future use. I may even still be able to write code, and my dream is to contribute to open source software projects even from within an immobile body. That will be a life very much worth living.
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I want to thank everyone for their good wishes and, um, hugs :)
As it stands, my condition is quite good. In fact at the time of my diagnosis two months ago, I was skeptical that it was correct. The ALS expert seemed rather smug that he had diagnosed me so early, saying that I was the least affected of any of his patients. Not only were my symptoms mild, I had had little or no progression in the three months at that time since I had first noticed anything wrong.
However, since then there has been noticeable progression. My initial symptoms were in my speech, a slight slowing and breathlessness; shortly after, my hands felt odd and a bit shaky while writing. This was stable as I said for a few months. But in the last two months my voice has gotten much weaker and softer, and somewhat more slurred; and my hands, especially my right hand, have lost strength. My right hand is now weaker than the left, and both are weaker than my wife’s hands. At this point I’d say that I’m about 90% functional.
It is annoying and worrisome that my initial symptoms are showing up in my voice and hands, the two most used and highest bandwidth sources of output available. Everyone’s progression is different with this disease, so I don’t know what to expect in terms of rate of progress or degree of disability at various points in the future. My whole plan revolves around retaining some degree of outgoing communication, but I had hoped to be able to wait until near the end of the progression to be forced to rely on the more exotic technologies. I seem to recall hearing about a guy with ALS who moused, and maybe even typed, with his feet, so I want to check into that.
That is a good idea about brain computer interfacing. I’ve only started looking into it a little. There are clinical trials going on with highly disabled ALS patients where they are testing it out. I have looked at some of the gaming headsets, but it seems that they largely pick up muscle movements in the scalp and face. Still it might be a good place to start.
Thanks again for the comments and advice.
My response may seem out of context with the others, because I do not know you personally. However, because we share the same name (I have always wondered if your ‘real’ first name is Harold like mine) and you have so much involvement in the technology field...you are a top Google result when I Google “our” name. My grandfather (also named Hal Finney) was a baseball player for the Pittsburgh Pirates in the 1930′s. His baseball stats are also high ranking Google results.
Bottom line, I am sorry to hear of your diagnosis with ALS. I have followed your work and publications (ok, i don’t know what all they are about...I sell heavy equipment, so crytography is not my bag) for years. Heck, I’ve been a Hal Finney fan for years. As I read this blog, clearly you have a lot of other fans as well.
I doubt we’ll ever meet. Just know there’s a guy in Alabama pulling for you. I am glad that you have chosen to be in the 10%. I know you will blaze a new trail for ALS patients just like you have in other fields you have been involved with.
Best wishes.
HAL FINNEY Birmingham, AL
A more recent update: Bitcoin and me (Hal Finney). Excerpt:
Are you signed up for cryonics?
I am indeed signed up, having been an Alcor client for 20 years.
Ironically I chose full-body suspension as opposed to so-called neurosuspension (head only) on the theory that the spinal cord and peripheral nervous system might include information useful for reconstruction and recovery. Now it turns out that half of this data will be largely destroyed by the disease. Makes me wonder if I should convert to neuro.
Indeed even the popular (mis)conception of head-only revival wouldn’t be that bad for me, not unlike the state I will have lived in for a while. In fact it would really be better in many ways if I could somehow lose my body once I become paralyzed, since it will be a potential source of pain signals and also a lot of work for caregivers to deal with. But I doubt that the technology is there yet.
That is very, very, very good to hear. Sorry, I had to ask that question first before I knew to say:
I’m sorry to hear about your diagnosis. I wish you the best in staying alive. I congratulate you on the wisdom that you have shown and are showing in making your decisions well and in advance. And may you be a lesson and exemplar to all those other readers who will, in one future world or another, walk a path much like yours.
I’m glad to hear you’re already signed up and already have life insurance. I don’t know what I’d have done if you’d said otherwise. Beat my head against a wall, maybe. I’ve known you for as long as I’ve been part of the transhumanist community I joined as my first step into adulthood.
Have you heard about this? http://latimesblogs.latimes.com/sports_blog/2009/10/new-book-says-ted-williams-frozen-head-was-abused.html
Oh yeah, I was going to reply to this. I read the article, and it seems like 90% of it is pure cryonics-bashing. Basically just making fun of those transhumanist nuts. The only parts that were really concerning was the part about knocking the tuna can off of Williams’ head with a wrench, and the suggestion that Williams’ will stated that he wanted to be cremated. But it’d be interesting to read the book it referenced—I bet it presents a much fairer view.
Johnson’s trying to sell a book. Alcor has sued him twice and won twice, and I believe his latest book violates a court injunction.
The part about the tuna can and wrench was indeed the only concerning thing, and it would be nice to see an explicit denial from Alcor on this point. But my own reaction can be best summed up as “pics or it didn’t happen”. Johnson has credibility zero, and the only reason I’m assigning non-zero probability, at this point, is because Alcor didn’t explicitly focus in on the wrench and deny the event.
EDIT: Good, they just did deny it explicitly. “In his book and during the Nightline segment, Mr. Johnson claimed he witnessed Alcor staff striking Ted William’s head with a wrench. Mr. Johnson, who was an executive with authority over the procedure in question, also claimed he said nothing about the purported incident when it allegedly occurred nor did he bring it to the attention of any other staff or board member. In fact, multiple individuals verified as documented witnesses to patient transfer procedures state without hesitation that Mr. Johnson’s claims are pure fabrication. Alcor’s internal investigation did not reveal any reports or recollections of any Alcor patient ever being struck by a wrench or any other object, accidentally or otherwise… Johnson’s statements about tissue debris, tuna, and cats are fictionalized accounts crafted for maximum tabloid shock value, as is nearly the entirety of his book. Alcor denies exposing patients to any devices or equipment that are not appropriate for their function, clean, and sterile as required.” Presumably they were finishing up the internal investigation before issuing the denial.
It’s plain sensationalism, IMO.
Oh, not sure if you heard about this, but apparently there was some Alcor and CI sponsored research and the result was basically that it’s a really good idea to make arrangements for, well, if anything happens to you to begin being cooled immediately, and actually even better, to have your blood washed out. India ink and rat ( :( ) experiments suggest that being a warm body for even a couple hours is enough to more or less cause effects like thickening blood and so on to more or less prevent any significant amount of cryoprotectant from actually ending up in the brain. (AFAIK, they’re working on updating their suspension protocols based on this info)
An immediate water+ice bath makes a big difference, and immediately washing out the blood makes a HUGE difference.
(At least, such info was presented by the experimenters when I went to the CI general meeting a couple weeks ago. I’m having some trouble finding info this specific research at the moment, though.)
Just figured you probably ought to know this for when you start to be at increased risk, so you may want to look into those experiments and make arrangements with regards to that.
Here’s hoping though that this is all academic and that you won’t actually need this, as it were.
EDIT: IIRC, it was these two that did that research and presented those results.
Refer to case summary A-2435, a recent patient who was able to become the “most expedient cases expedient cases from bedside to cryopreservation procedures that Alcor has ever experienced” by ensuring she was as geographically close to Alcor as possible when preservation became necessary:
http://www.alcornews.org/weblog/2009/09/case_summary_a2435_member_a243.html
Linkrot marches on; the summary is here and the full case report is here. (The former says that A-2435 is Alcor’s 88th patient, the latter the 89th, which is a bit odd.)
To what extent, if any, did your choice of signing up years ago modify the impact of the bad news ?
From a certain point of view, your diagnosis enhances the value of having purchased the cryonics option. You can be reasonably certain that when the end comes it will be predictable and you will be in an environment that makes suspension and transport easier.
Also I imagine that financing suspension with a life insurance policy becomes a different proposition, financially, after you’ve been diagnosed with ALS.
I’ve been putting it off, myself, for a bunch of reasons including the usual of looking like a very long shot and the social stigma, but mostly because at the moment it’s such a US thing and there is so very little guidance to be had if you live elsewhere (I’m in France). Your example is making me rethink that. I suppose I should just fire off an email to Alcor and CI and see what they can tell me.
It was actually extremely reassuring as the reality of the diagnosis sunk in. I was surprised, because I’ve always considered cryonics a long shot. But it turns out that in this kind of situation, it helps tremendously to have reasons for hope, and cryonics provides another avenue for a possibly favorable outcome. That is a good point that my circumstances may allow for a well controlled suspension which could improve my odds somewhat.
You’re right though that with this diagnosis, life insurance is no longer an option. In retrospect I would be better off if I had purchased more life insurance for my family, as well as long term care insurance for myself. Of course, that doesn’t change the considerations which made those seem to be unattractive gambles beforehand.
Neuro is cheaper than whole-body, isn’t it? Take some equity out of your cryonics insurance plan and use it for your (pre-deanimation) care.
Keep the equity in your insurance plan in case suspension prices go up over time.
I think you probably should. There’s no real upside to preserving your body as you say, and there’s a very real cost. (What’s Alcor’s differential? IIRC, it was many thousands of dollars.)
You could direct the excess money somewhere else, like your family (presumably ALS will have a big economic impact on them—treatment expenses, reduced earnings, etc. - even if you live out a natural lifespan). Or you could donate it straight to Alcor: I’m sure they have better things to do with say $20,000 than spend it on freezing some meat that doesn’t need freezing.
Well, you need your torso, but perhaps not your limbs. shudder
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*
This article has moved me to finally register and post here. I am inspired and humbled by Hal Finney’s grace in the face of adversity.
Every time I look in the mirror, I try to remind myself that what I see is just a vessel and that “I” am really a configuration of information concealed within. I hope that, in the event that I must confront a decline in my physical capacity, this mental exercise will allow me to approach the situation with the same lucidity that Mr. Finney has demonstrated for us all.
Welcome, and well said. Great first comment!
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.
The body of this worthy man died in August 2014, but his brain is preserved by Alcor. May a day come when he lives again and death is banished forever.
Amen to that comrade.
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.
Ouch, nasty, damn.
Well, good for you for, well, choosing to live!
I think I’ll also second whpearson’s suggestion for early on getting a bit of practice/use with the tools you may need later on, so that when you really need them, won’t be as big of an issue.
Actually, for what it’s worth… you know what? I think I ought finally do a bit more than just offering good wishes. I think I’ll treat this as the last bit of “excuse” I need, recalibrate my sense of scale of the problems (or at least remind me of it) by treating this as a base to multiply by and, well… I’m going to deliberately take Eliezer’s “evil joke” from yesterday with regards to to the bystander effect (pointing and saying “you. save the world”) seriously and personally and I respond with “I accept.”
Where was this joke? I don’t find it in Eliezer’s user page or a Google search.
It was at the Summit. He was using the example of… I forgot the percentages, but if five people witness someone having an epileptic seizure, it is less likely that they will get help than if only one person witnesses it.
So he pointed to a random person in the audience and directed them to save the world, instead of directing that mandate at the audience as a whole.
I hope to see an email in my inbox with details shortly.
And sent.
Soon as I figure details out. (Which, actually, partly involves me waiting on a response from someone else.)
Actually, no, before that.
Having made my decision, that doesn’t automatically cause a ray of light to shine, revealing the optimal (or even reasonably good subotimal way) to act on it. :) (The universe just isn’t that convenient. Actually, a universe that convenient and nice would probably be the kind of place that didn’t have as much existential risk for us in the first place.)
There we go, just found your email address. You’ll indeed see a message from me shortly.
Awesome.
Agreed, but on the other hand he shouldn’t say he’s doing so, because now I don’t have to.
Not really: the way the psychology works is, each person is inhibited from taking action if nobody else is. Once one person starts doing something, it often becomes easier for others to follow.
(My answer? “Yes, I’m trying.”)
augh! No, don’t do that. (Er… don’t not do that… You know what I mean!) Right now I’m in a state of “what the heck did I just commit myself to while I suffered from a terrible moment of sanity? Given my current skills/etc, how am I going to do this?” While trying to avoid, well, retreating from “I will” to “I’ll try” or any other form of running away from the problem.
Now I see this and my reaction is not entirely unlike “EEEEEEEEK! I haven’t even begun and I’ve already made it WORSE!”
I’ve thougt about this situation, and I would like to know the context in which Eliezer said this. Was he talking about creating friendly AI? This was my first thought, but he’s also talked about the dangers of running headlong into that problem.
In the typical bystander problem, you don’t have to be a doctor or a medic, you sometimes just have to dial 911. You probably don’t need any specific skills to save the world. You just have to make sure you don’t delude yourself into thinking your actions are sufficient.
And don’t worry, I promise not to not save the world.
Save the world? From what, exactly? Black holes? Gamma ray bursts? The eventual expansion of the Sun? UnFriendly Seed AI? Asteroid impacts? Nuclear weapons? Runaway climate change? Peak Oil? The Year 2032 problem? Annoying Christmas songs?
“Make the world a much better place” seems a somewhat less ill-defined command.
I’m positive that most actions that make the world a much better place would be insufficient to deal with whatever threats Eliezer was talking about.
Doing that is just finding a good sounding reason to not save the world.
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 have had success using it:
http://www.als-mda.org/publications/als/als10_7.html#equipment
If your medical team has not registered you with the MDA (Muscular Dystrophy Association, as in Jerry Lewis’s telethons), you should look into that, as they can provide various assistance, financial, technical, social… (They don’t assist with the cost of a Segway, but they will for a power scooter—which to my mind is misguided).
To return to the Segway—it is very easy to use, and very stable. I taught my mother in 10 minutes—and she has been using one as a mobility aid herself for the past 9 months. Picture a 76-year-old great grandmother taking on the world on a Segway—that’s my mother. I wish Segways had been invented when my dad was still alive, so he could have benefited.
I do everything imaginable on my Segway—taking out the garbage, pushing a shopping cart, raking leaves… I take it on the ferry, on BART, Caltrain. I can get from my home in Marin to doctor’s appointments at Stanford (or beyond). I have put over 3000 miles on it, and it allowed me to continue working (taking it right to my desk).
Segways can be fitted with seats, for when you can no longer stand for long periods. There are people with no legs using them, or with two prosthetic legs.
See http://www.draft.org for a lot more information on the use of the Segway to restore lost mobility.
But there will come a point where you won’t be able to manage a Segway. To me, the predecessor of the Segway, the iBot wheelchair, would be the perfect next step. Unfortunately, however, Johnson & Johnson ceased production of them a few months back. It might be possible to track down a used one. I am hoping that some other, more farsighted company, will pick up the rights to make it from DEKA.
BTW, you may hear nay-sayers say that the Segway was not “designed” for the disabled. No, it was designed for everyone—including the disabled. It was designed by the same guy that invented the wearable insulin pump (which I also wear), the iBot wheelchair, and the DEKA prosthetic arm. So ignore that argument—and besides, anything that works for you, is what works; who cares what it was designed for. If some household cleaning device helps you put on your socks—go for it!
I wish I had more to offer, but I think you’re the sort who will take the bull by the horns, and track down everything you need to know.
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/
FYI, there is a new report from the American Academy of Neurology out just today that offers new guidelines for the best treatments for ALS:
http://www.eurekalert.org/pub_releases/2009-10/aaon-ngi100609.php
Also in the news two days ago:
http://www.eurekalert.org/pub_releases/2009-10/uorm-csp101509.php
“Compound shows potential for slowing progression of ALS”
Ugh. Deepest sympathies.
Your situation, and your reaction to it, highlight a great advantage of working within a knowledge profession—of identifying as what the LW community calls “rationalists”. When learning about something like that, you can make plans to be not just a passive sufferer of the disease, but a researcher of it from the inside, actively helping in the fight against it.
You can plan to learn all you can about the causes and progression of the disease, and be prepared for your losses as they happen. You can plan to investigate related areas—you mentioned voice synthesis and Brain-Computer Interfaces also come to mind as a field that’s been moving along lately; still quite slow from what I’ve seen, but improving. If you can use BCI to play a video game, it’s not such a big stretch to think of it providing control of, say, a virtual avatar—the name “Second Life” takes an altogether different meaning there. Being a software developer would, at any rate, definitely be handy in that situation.
I didn’t know about voice banking; that’s a fascinating idea, with all sorts of interesting implications (would one want to record non-verbal things like laughter; is there some way to program voice synthesis for singing, etc.). Can you maybe post a link to whoever provides the free service you mentioned ? Especially if they can use financial support.
Best wishes.
The voice banking software I’m using is from the Speech Research Lab at the University of Delaware. They say they are in the process of commercializing it; hopefully it will still be free to the disabled. Probably not looking for donations though.
Another interesting communications assistance project is Dasher. They have a Java applet demo as well as programs for PC and smart phones. It does predictive input designed to maximize effective bandwidth. A little confusing at first but supposedly after some practice you can type fast with only minimal use of the controls. I say supposedly because I haven’t used it much, it’s not clear what I might be controlling it with. I should practice with it some more, it sounds likely to be part of an overall solution. Would be cool to control it with BCI, sit back and just think to type your messages.
Everybody with ALS talks about how terrible it is, all the things you can’t do any more. But nobody seems to notice that there are all these things you get to do that you’ve never done before. I’ve never used a power wheelchair. I’ve never controlled a computer with my eyes. I’ve never had a voice synthesizer trained to mimic my natural voice. If I told people on the ALS forums that I was looking forward to some of this, they’d think I was crazy. Maybe people here will understand.
Hi Hal. I’m sorry to hear of your diagnosis.
I spent two years as the maintainer of Dasher, and would be happy to answer questions on it. It’s able to use any single analog muscle for control, as a worst case (and a two-axis precise device like a mouse as a best case). There’s a video of using Dasher with one axis here—breath control, as measured by diaphragm circumference:
http://www.inference.phy.cam.ac.uk/dasher/movies/BreathDasher.mpg
and there are videos using other muscles (head tracking, eye tracking) here:
http://www.inference.phy.cam.ac.uk/dasher/Demonstrations.html
Head-mice (you put an infra-red dot on some glasses or your forehead and then just move your head to move a pointer) are a common and cheap input method; they cost less than $100, and Dasher’s very accepting of noisy input; if you oversteer in one direction you can just compensate later.
You’re not the first person to consider Dasher with BCI—here’s a slightly outdated summary:
http://www.inference.phy.cam.ac.uk/saw27/dasher/bci/
All the best,
Chris.
How confident are you of this? I’d be surprised if there weren’t some there who understood.
I was listening to an interesting podcast recently with the fellows who founded “patientslikeme.com″ I have no idea what the community is like, but it may be an interesting resource you haven’t encountered yet.
http://itc.conversationsnetwork.org/shows/detail4118.html
I understand—it reminds me of the Max Berry story “Machine Man” where the protagonist, a robotics researcher, loses a leg, so he designs an artificial one to replace it. Of course, it’s a lot better than his old leg… so he “loses” the other one. Of course, two out of four artificial limbs is just a good start (and so forth). I wouldn’t wish your condition on anyone, but you might just have been lucky enough to live in a time when the meat we were born with isn’t relevant to a happy life. Best wishes regardless.
I’ve played around briefly with dasher and like many of these alternate text inputs it is not designed with coding in mind. I can’t remember the forms of punctuation it uses, but the frequencies will be all wrong to start with.
What you really want is a cross of dasher and the visual studio style auto-complete, so the words/letters it puts largest are the the variables in scope or from libraries included, or the member functions for the object you are accessing. You’ll probably need to specialize your tools to a single language to start with, which is a shame. Pick wisely!
I’d love to play around with controlling a computer with my eyes.
Dasher, at least the Mac version and presumably the other desktop versions, can be given a custom character set (including how they’re ordered and grouped), and you can feed it an arbitrary text file to learn frequencies from. If you feed it plenty of program text it should learn the common phrases just fine, though without context-specific completion as in an IDE.
(Update: The current Mac version seems to be have an entirely nonfunctional preferences dialog and thus lost the character set functionality (there is a blank list box for it). Feels like the app got released in the middle of development work — hopefully it’ll be fixed sometime. The basic functionality still works; I typed about a third of this paragraph using it before I got tired of the lack of uppercase and punctuation.)
The link for the voice banking and synthesis is: http://www.modeltalker.com/
If you want to make a donation, the link is: http://www.medsci.udel.edu/cpass/support.html
Best, -jim
BCI is intriguing, but from what I understand, it’s not the best option at the moment—it’s slower, more difficult, and less reliable than a gaze detector, which I assume would work in any case where there’s enough muscle control to allow vision. At any rate, though, I know that those kinds of systems can be used in Second Life. I’m peripherally involved with Virtual Ability Island, which has members who use that kind of technology. And yes, virtual worlds (and Second Life in particular at the moment, though there are other options—OpenSim might be a slightly better option eventually for someone interested in open source) are uniquely useful for people with limited access to the real world.
Is this familial or sporadic ALS?
If familial, I suggest you get your SNPs and CNVs read with a microarray (costs about $600). It may be worth it even for sporadic ALS.
You might also take part in this ALS gene study. They would presumably pay the cost of either measuring your SNPs, or sequencing genes of interest.
A little web browsing shows there are at least 4 genes suspected of having a causal role in ALS: SOD1, DPP6, also see this and this, TDP43, and FUS/TLS (Mutations in the FUS/TLS Gene on Chromosome 16 Cause Familial Amyotrophic Lateral Sclerosis, Science 323(1205) Feb 27 2009). You could have these 4 genes sequenced.
I’m suspicious of the DPP6 study, because they were studying non-hereditary ALS. How do they find a gene for a nonhereditary disease? Note that the third link above for DPP6 is to a study refuting its connection to ALS.
The sporadic form is IMHO likely not caused by gene mutations; otherwise, it would be familial.
All types of ALS AFAIK are associated with misfolded proteins accumulating in the cytoplasm of peripheral neurons. If a SOD1 mutation is at fault (20% of familial cases), then gene therapy adding a functional SOD1 protein was found not to help, likely because the mutated protein is still present and producing misfolded proteins. You could try to destroy the mutated SOD1 mRNA transcripts with RNAi (see this article on the first successful use of RNAi in peripheral neurons. Blocking the mutated SOD1 without adding a functional SOD1 causes death in mice. Therefore, you would need to sequence your SOD1 gene, find the mutation, design an siRNA matching that mutated mRNA but not the functional gene, and use gene therapy to provide a functional SOD1 gene. DNA binding is not specific enough to create an siRNA that can bind to the mRNA of a single-base-pair mutant but not the wild type; therefore, you might need to target the 3′ UTR of the mutant gene, and provide a different 3′ UTR in the gene therapy vector.
It would help if you could tell whether a particular protein is being misfolded and accumulating, and identify it. I don’t know how to do that.
If you can’t get a hold of papers behind a paywall, send me a list of up to a dozen citations, and I’ll try to get them for you.
Good call, at least in the sense that becoming expert on the relevant science of the disease also seems like the right thing to do in this situation, to be able to find short cuts the moment they become available.
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 during high alpha wave production and brain synchronicity which just means multiple parts of the brain are producing the same waves at the same time.
Originally I started training mostly out of curiosity to see if I could increase creative problem solving abilities. I think it is also very useful for maintaining a positive outlook, and a state of mind that has more potential for choosing how attention is given/selected.
So, if I were to recommend one book, it would be Les Fehmi, PhD ‘The Open Focus Brain’. This book reminds me of one of my favorite programming books ‘The Little Lisper’ because it has one of the most effective training methods on a CD for brain synchronicity. (Little Lisper was good because you quickly got the experience, and could go for the theory later)
For the EEG, I would recommend Neurosky mindset which is only a single channel (not ideal) and is only two hundred dollars including a pretty nice brain visualization tool. The OpenSource EEG is good as well, but takes awhile to get all the parts for & assemble/test. You might find the EEG is unnecessary, but if you do not get the state change from the CD, then some basic feedback could help.
Best of luck, hope this helps
I had already decided to sign up for cryonics, but I think I’ll be more expeditious about arranging it now.
Likewise. I’m sure you’ve heard the name Rudy Hoffman before. But if not, do give him a call. I’ve got some papers in my inbox that I need to print and mail when i get home...
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:
so it sounded like communication would be useful, if still feasible.
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.
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/
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 life, if you can just live long enough, you might see the days of indefinite lifespan.
Either way though, your story is very uplifting, and I hope you do live long enough to see indefinite lifespan. I hope everyone does. :)
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.
My sympathies.
I’ve given the occasional thought to what I’d do if I ever found myself in this kind of situation. And although I can’t speak to my will to go through with it at the time, I’d honestly probably choose to die. Not because of concerns about my human dignity or some kind of depression that comes with a diminished quality of life, but just because my discounted present value will probably be heavily negative, meaning that I’m tying up resources that could be better-used than keeping me alive. I can’t speak about whether this applies to your situation, not knowing how much treatment costs nor what you do in your life, but if it were me… yeah.
Usually I wouldn’t admit to thinking this way because it strikes people as being really bizarre, but I figure if any group would at least be able to understand where I’m coming from, it’d be here.
But I do seriously admire your ability to hold your head high in an extremely adversarial situation… keep it up.
(Oh, and the DPV concern is also why I’m skeptical of cryonics, but I’m open to arguments showing that it really is worthwhile.)
Sympathies, and best wishes for continuing happy and productive life. Keep us posted on how things go!
I’m also in the camp that would not choose such measures for myself, partly for the reasons Peter discusses.
However, the resource argument does not, I think, apply to cryonics. Cryonics has very strong economies of scale, the upshot of which is that if you pay $X for an attempt to save your own life that way, you’re effectively also contributing nearly $X to trying to save future patients’ lives, without having to pay anything extra.
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!
I’m very sorry to hear that. Truly awful. All my sympathies.
What I’m curious about is: What about the motor neurons that control the muscles used by your eyes to focus and look in different places? Are they typically affected like the others?
Well, the facial muscles are innervated by cranial nerves, which do not run through the spinal column (the L in ALS stands for ‘lateral’ referring to the disintigration of the lateral portion of spinal cord), and the eye muscles in particular send input to several motor nuclei . Since the progression of ALS tends to start in the upper or lower extremities and progresses proximally, I would guess axon length might be a factor in cell survival. Also, since ALS affects both upper and lower motor neurons, I would guess the eye’s redundancy of having several motor nuclei might preserve its motor capacities.
I’m happy you’re going to live.
Aside from that, I support alternative treatments (another, with better credentials). I have no experience with ALS, so I can’t say if they work. You might even be able to find someone who will do an acupuncture treatment on you for free in the name of science. I know I would, and I know how to apply acupuncture treatments; but I’m not a licensed practitioner. I’m barely even a student.
Life feeding on death degenerates. Life feeding on life regenerates.
This is a Natural Law. You can discover it as true for yourself.
Pasteurization (and similar) are the lead pipes of modern civilization.
Those of you who see this, please try it out for yourself. The simpler the raw food, the faster the detoxification. Detoxify, then rebuild.