21 ms·

Monday was my 46th birthday and likely my last

345 points by ca98am79 13y ago

psb 13y ago
I think it would be nice if we could do something like polymath (from Terry Tao) for medicine. Maybe have a combination of medical experts + statisticians + bright people collaborate on a large scale to tackle some of the health problems out there.
msie 13y ago
The body is still such a mysterious device. It's so frustrating that we still can't figure out diseases like ALS. The greatest invention would be a body debugger.
- toomuchtodo 13y ago
  The greatest invention would be a body debugger. Imaging + Genome Sequencing + Blood Tests Still pretty barbaric compared to what we'll see in the future, but useful while we drag ourselves forward. Anecdote: I was bit by a tick about 2 weeks ago. To get a lyme disease/meningitis test done, I had to pay my copay ($30) at my primary doctor (for him to approve the tests) and then had to make another appointment to have my blood drawn and tested by Lab Corp (~$200). I then had to wait for my doctor to call my back because Lab Corp would not provide my results directly to me (!!!). Like I said. Barbaric.
  - objclxt 13y ago
    This seems less an indictment of medical science than of the healthcare system you have to live with. Because where I come from, if I was bitten by a tick I could book my primary doctor's appointment online, get the blood test done the same day at a walk in clinic without an appointment, and then phone the doctor's surgery two days later to get my test results...without paying anything.
    - toomuchtodo 13y ago
      I agree I have comingled two things: Medical technology and healthcare systems. My apologies.
    - readme 13y ago
      Unfortunately over half of Americans don't realize the current healthcare situation is a problem, and actually believe it's good, because it gives them more freedom. I almost thought that once, but it's really easy to run through the facts: 1. Since the primary purchasers of health insurance are companies, the insurance companies grossly tilt their plans in the direction of companies. Individual plans are lackluster. The individual plans where I live don't even cover mental health services. Not even one. 2. Since companies are fallible, we cannot depend on them to honestly offer insurance to every worker who deserves it. For example, in Massachusetts, there is a mandate for companies with full time employees to provide a health insurance plan: http://www.rawstory.com/rs/2013/03/29/companies-cut-hours-of-full-time-employees-to-avoid-providing-health-care-under-new-rules/ http://www.rawstory.com/rs/2013/03/29/companies-cut-hours-of... naturally, companies schedule for .1 less hours and leave you in the dust. It seems that this is a total mess. Companies cannot be put in the crossfire of the health insurance debate with these unimplementable laws. The only reasonable solution is to pay for it with the federal income tax. Competition and free markets are good, but not in this space. Would you like to find out the free market price for an ambulance after you were involuntarily hit by a bus and woke up in an ICU? We live in a strange land of "freedom"
      - VLM 13y ago
        "The only reasonable solution is to pay for it with the federal income tax." Pay out of property tax. Follow the money and keep the money loop as small as possible to maximize return on investment and minimize accounting losses. 99% of your lifetime medical expenses are going to be at the hospital closest to your home, most likely. Makes closing the loop simple and obvious. If for political reasons you have to go county sales tax to pay for the county hospital, that works too. Much like the most effective way to fund a local school system seems to be local prop tax rather than the feds or the UN or something. "Companies cannot be put in the crossfire of ... with these unimplementable laws." Its never slowed down any other regulation for any other reason in the past, ever, so may as well not start slowing down with health care.
  - newbie12 13y ago
    Do you still have the tick? You can send it to a lab for analysis, it costs just $60. The human lyme tests are very inaccurate, especially within two weeks of the bite-- you might not have formed antibodies yet.
    - toomuchtodo 13y ago
      I kept it for a few days, but disposed of it after I had blood test done. I found a lab that will accept my own blood sample for a western blot, so in a week or two I'll send them a 5ml EDTA test tube for processing (I can draw my own blood at home).
    - VLM 13y ago
      "Do you still have the tick? You can send it to a lab for analysis, it costs just $60." This is the most important lesson of the whole discussion, having gone thru this. There's a direct analogy with rabies, if you know the animal is uninfected you can save yourself quite a bit of time, pain, and money. If you know its infected, well, treatment usually is wiser than waiting for death. Bit by a dog? Eh, make it let go, and then walk away, no need to check for a rabies vaccination tag. After all, what are the odds? LOL
      - rotnewson 13y ago
        > Bit by a dog? Eh, make it let go, and then walk away, no need to check for a rabies vaccination tag. After all, what are the odds? LOL I don't know where you live but it is pretty standard to get a few vaccines (rabies included) when bitten by an unknown dog as a precaution. Same reason people get tetanus shots with puncture wounds.
  - duck 13y ago
    Had the tick been on you for a while? Did it have the target rings around the bite? I can't imagine getting tested every time I was bit by a tick.
  - Alex3917 13y ago
    Are there lyme tests that are accurate in less than a month? I also got bit by a tick a couple days ago, but I just went to the doctor and got a doxycycline prophylaxis. I'll probably also send the tick in for analysis.
    - newbie12 13y ago
      Just do the antibiotics and don't worry about it, it will kill the bacteria if it exists. The standard lyme test looks for the antibodies, which won't exist if you take the antibiotics within a few days of the bite.
      - Alex3917 13y ago
        "Just do the antibiotics and don't worry about it, it will kill the bacteria if it exists." There's still a chance of having it even after the antibiotics. The chances of getting it even after taking a prophylaxis go down from around 3% to perhaps a little under 1%, but there's still a chance. And there are also other tick diseases that doxycycline doesn't work for. The most likely case is that mine was only attached for a little under 24 hours, which reduces the chances even further, but considering that if not treated right away it's basically as bad as AIDs it's still kind of alarming.
  - tankbot 13y ago
    Seems like much ado. If I was bitten by a tick (or twenty, as has happened before) I would pull it off and flick it, then immediately forget about the whole thing. Do you see a doctor after every time you get into a car? Because that is far more likely to kill you than just about anything you can think of.
    - kaybe 13y ago
      It really depends on which area you live in. Some are high-risk for diseases, others are fine.
      - rquantz 13y ago
        Additionally, though, a deer tick will not transmit Lyme disease until it has taken its blood meal, usually 24-36 hours after first biting. If you take it off right away, and it hasn't "inflated," you're almost certainly safe.
    - Aqueous 13y ago
      as a person who spent 20+ years fighting lyme disease, which ended up attacking my CNS, i can tell you this is absolutely not a good idea.
      - tankbot 13y ago
        I'm sorry about your experience, it wasn't my intention to be flippant about the disease, but rather to point out that people's paranoia is often misdirected.
        Aqueous 13y ago
        no problem - paranoia is sometimes excessive. however, "Just because you're paranoid doesn't mean they aren't out to get you," is also true, in my experience :)
        tankbot 13y ago
  - darkarmani 13y ago
    > I was bit by a tick about 2 weeks ago. To get a lyme disease/meningitis test done Why do they even test for it? Don't they just start antibiotic treatment for it?
    - VLM 13y ago
      You've just defined the recipe for developing antibiotic resistant "other things". Doxocycline-resistent... donno UTI or STD or gum disease or whatever. That would suck if STDs became resistant, now incurable. To a crude first approximation, a new antibiotic gets a fixed number of uses in the environment before it becomes ineffective in the environment. Its bad medicine to "waste" a valuable use of a fixed supply of an expensive product. You can save 50 million lives of actually sick people, or just provide 50 million placebos. Also most dr. have a huge aversion to making people sick, and there are very few antibiotics indeed (none?) that don't have a measurable chance of killing the user or making them sick. Amoxocilian makes me pretty sick. Doing a course of it "for fun" would be incredibly unwise. Of course if it were "take the amoxocilian and get sick, or the infected leg has to be chopped off" well maybe that's worth some puking and fever. So if your odds of infection are 0.5% but the odds of horrendous digestive system meltdown are 5% and death is a 0.1% likelihood, you're better off getting tested. This is like the old "why not remove everyone's appendix?" question. Because removing everyone's would kill more people than appendicitis currently kills for a net negative.
      - darkarmani 13y ago
        > So if your odds of infection are 0.5% but the odds of horrendous digestive system meltdown are 5% and death is a 0.1% likelihood, you're better off getting tested. Except when you get bitten by a tick and have stage-1 Lyme disease symptoms like a huge swollen bulls eye, your odds of infection are more like 99.9%. If someone is getting tested for getting bit by a tick, they most likely have some sort of symptoms. > You've just defined the recipe for developing antibiotic resistant "other things". Doxocycline-resistent... donno UTI or STD or gum disease or whatever. That would suck if STDs became resistant, now incurable. I thought that was more likely from the hundreds of millions of pounds of antibiotics used in factory farming, not preventative medicine. When a bunch of us were exposed to a person who 48-hours later came down with severe meningitis (coma), they dosed us all with cow pills of antibiotics. I'm sure they could have waited until we all got 105F fevers by the time the tests came back, but they took the risk of antibiotic resistance and pre-treated us all.
  - gohrt 13y ago
    What's barbaric? Labor and materials cost money. Someone has to pay. LabCorp is not staffed with people trained to divulge and discuss your potentially serious diagnosis. All but the smallest independent medical clinics have phlebotomists on site. If you want faster medical service, move to a more dense/develeped town. Most of us live in cities, for reasons quite like this.
    - toomuchtodo 13y ago
      I live in Chicago. Are you saying I'm not living somewhere dense enough? Also, they're my lab results. There is no reason to withhold them from the patient.
  - quesera 13y ago
    I have some family experience with Lyme and meningitis. I'm confused. A blood test is not useful for a recent tick bite. It takes 4-6 weeks for the antibodies to be present in detectable quantities. For Lyme, you observe the possible site of infection for a few days, if it is swelling or reddening (with or without the characteristic "bulls-eye" pattern), then you get antibiotics. Doxycycline is popular, but it's a long (21-day) course, so a good doc will not prescribe it casually. Meningitis is either bacterial or viral. The true test is analysis of spinal fluid (this one goes to 11!), but it's a very fast-moving and dangerous infection. Regardless, a blood test is unlikely to be conclusive. You can save the tick and send it off to a local lab for analysis. That'll tell you with a high degree of certainty if the tick had the spirochette. In some parts of the country, most do. It won't tell you if it has been transmitted to you, of course. Disease transmission typically happens after the tick has been attached for 36-72 hrs. Those of you who haven't lived in deer tick country might not realize how tiny the things are this time of year. Pinhead sized or smaller. Easy to miss even if you're diligent. No solution for it except to be more diligent, however. Good luck with the doxycycline. I don't understand why your PCP ordered a blood test, but the meds make sense.
- melling 13y ago
  World GDP is about $83 trillion dollars. http://en.wikipedia.org/wiki/Gross_world_product http://en.wikipedia.org/wiki/Gross_world_product It's probably just a matter of figuring out how to funnel enough money and people on the problem. Smartphone advances, for example, will be incredible over the next decade. Much better graphics, CPU, batteries, etc. That's because there's a huge market for them. Another example is 4k TV's, which are out of reach. Within 5 years, they'll be cheap, and a lot better. Figure out a way to have consumers directly spend more money on medical research/technology and great things will happen.
  - EvilLook 13y ago
    Better smart phones and better sensors means you can opt-in to be part of a research study with your smart phone being the telemetry device, providing valuable medical data to scientists and doctors.
  - Stranger2013 13y ago
    We need to fix the root of the problem - evolution-derived protein bodies.
  - takluyver 13y ago
    There is already a lot of money being spent on medical research. Cancer is a prime example. Cancer Research UK estimates that about 1/3 of us will have cancer during our lifetime, So there's a very large 'market' or political willingness to fund research. There are some dramatic changes at the scientific level (gene sequencing is getting much faster and cheaper), but progress at the treatment level isn't so quick. The dramatic advances in consumer electronics aren't just about spending. We spend a similar amount on cars, but a new car today isn't much different from a new car ten years ago. Forty years after we landed on the moon, we don't have day trips there. Consumer electronics change fast largely we've been able to make increasingly tiny patterns in silicon, but most of our other technology develops much slower.
    - newbie12 13y ago
      The problem is that insurance companies and governments stand between health care and consumers. So the incentives aren't as strong as other markets. Purely market-based health care, like eye lasic or breast implants, have seen remarkable improvements in safety and lower costs.
- ttrreeww 13y ago
  We are not even trying. Evidence based medicine is too busy finding more "treatments" instead of cure.
bsaul 13y ago
The question of people being frozen in the hope of being revived is mentioned in a very peculiar way in the "Transmetropolitan" comics (by Waren Elis) . I really hope for Mr Winborn that the future's going to be a better place :))
- objclxt 13y ago
  Perhaps I am a pessimist, but I don't see the future turning out well for those who have chosen to cryogenically preserve their bodies. That's not to say that the people practising it don't believe in what they're preaching - I'm sure many people involved in the cryonics industry deeply believe in the technology. But consider this: what value is there in reviving the dead and frozen rather than preserving the living? As it stands today, cryonics is an act of faith, not science. And you're more than welcome to believe in it, just like any other faith, but I personally don't see why future society would put the needs of the frozen above those of the living. And unlike some other faiths, it's a very expensive option to partake in.
  - toomuchtodo 13y ago
    As it stands today, cryonics is an act of faith, not science. And you're more than welcome to believe in it, just like any other faith, Science has a much better track record than organized religion: http://www.nobeliefs.com/images/DarkAges.gif http://www.nobeliefs.com/images/DarkAges.gif
    - quarterto 13y ago
      Unlabelled Y-axis, no sources mentioned. I sincerely doubt this graph is based on anything but some crap that popped into the author's head one day.
      - toomuchtodo 13y ago
        Ignore the graph. How many vaccines has organized religion developed?
Eliezer 13y ago
Slashdotted for me, anyone got a backup link?
- kareemm 13y ago
  Cached: https://webcache.googleusercontent.com/search?q=cache:5_8ePS-bGMsJ:aaronwinborn.com/blogs/aaron/monday-was-my-46th-birthday-and-likely-my-last-anything-awesome-i-should-try-after-i-die+&cd=1&hl=en&ct=clnk https://webcache.googleusercontent.com/search?q=cache:5_8ePS...
  - Eliezer 13y ago
    Thanks! (Reads.) Now that is the spirit.
- beala 13y ago
  Coral mirror: http://aaronwinborn.com.nyud.net/blogs/aaron/monday-was-my-46th-birthday-and-likely-my-last-anything-awesome-i-should-try-after-i-die http://aaronwinborn.com.nyud.net/blogs/aaron/monday-was-my-4...
- Aardwolf 13y ago
  I don't see the article on slashdot so I guess HackerNewsed would be a more correct term.
  - jacobparker 13y ago
    People use "slashdot/slashdotting" to refer to the general phenomenon; it's quite common. http://en.wiktionary.org/wiki/slashdot http://en.wiktionary.org/wiki/slashdot
andyjohnson0 13y ago
Previous discussion of Aaron's situation here: https://news.ycombinator.com/item?id=4229108 https://news.ycombinator.com/item?id=4229108
virtualwhys 13y ago
That video is heartbreaking. "You may have heard of her, her name is Wonder Woman", tears. He lived in a Buddhist monastery at one point; life is suffering. He'll soon leave his loved ones, and he knows it's very much sooner than later. What can you do in such a situation? Clinging to life, little time remaining, what to do? I thought something ridiculous, like go on retreat until the end, but right where he is, with his wife and kids is probably just perfect. They're all being transformed by the experience. Yours is not to reason why rings true. Who's to say that an "early" death is not in fact a gift for the living?
- virtualwhys 13y ago
  Apologies to anyone offended by my views, this struck an unintended chord for some of you, was just expressing myself in the moment based on my own experience of the death of a loved one.
  - Helianthus 13y ago
    I hope you've noticed that a number of people came forward to relate a similar perspective on death. I really respect your decision to bow out of the emotionally charged conflict in the thread. ...However, I am not inclined to be so wise. If you're reading this, please try to understand my position even if you feel affronted by it; bare in mind also that there is some of my own emotion in this and I recognize I'm venting a bit. For some people, emotions are a very public thing. They are shared with anyone and everyone nearby. For some people, they are a quiet, contemplative thing. They are felt and shared only with those close to them. What happens in public settings is that people that feel quietly are shunted out. They aren't heard, they don't express themselves because, by their nature, they don't have to. Attachment to death seems immature to me. It seems like we have to trumpet again how awful death is, say the things that everyone knows. Because that's the other thing about emotionally loud people: they have to make sure everyone's feeling the same things, that we're all on the same page. virtualwhys experience with a close friend's suicide was criticized: he was told he was __grieving wrong__. The appalling rudeness of this is overlooked because virtualwhys, a quiet person, emotionally, stepped out rather than continue to feel like he was stepping on other people's emotions. Quietly emotional people respect other peoples' feelings. Meanwhile, a lot of _other_ people are quietly relating their own grief in similar terms as virtualwhys. Look, death is an experience. You can't change it. Even if we cure everything someday, that won't change the fact that we've lived and died. Wringing your hands about death is only additional suffering. Because that's the beautiful thing about accepting death: you can make it more about life than loss. It is an experience of the vital things, the core things, the deep bonds and strong connections. Aaron will die, with his family around him, still looking to the future and full of life. That is very profoundly beautiful. It is a gift. More to the point, it just _is_. It cannot be changed, but it can be appreciated. Here's where I fall on virtualwhys side: to me, any other understanding of grief seems to be pretending you could possibly have control. Death forces us to see that we have no control--and when that is pointed out, _some_ of us can't handle it. Yeah, that last part is a bit rude, and I apologize... somewhat.
Andrenid 13y ago
That was incredibly inspiring, and incredibly depressing. As a Drupal fanatic who built my career on it, and a person also dealing with a terminal illness (though I have a couple years left, if all goes well), it's upsetting to see that someone who gave me so much, now has to go through all that. I feel genuine pain and am quite legitimately upset now. I wish Aaron and his family all the best (considering).
- SiVal 13y ago
  I wish you the best, too, along with Aaron. I've occasionally asked other people what they thought the worst problem in the world was. Nobody has ever answered with my answer: that all of our loved ones are going to die. The utter inevitability of death within a few decades of birth is so thoroughly taken for granted that people are vastly more concerned about the NSA or carbon dioxide than about literally saving the lives of everyone they care about. We need a working backup and recovery plan for people as soon as possible. How soon it will happen will probably depend a great deal on how soon a critical mass of people can be made to see it as an actual engineering problem urgently requiring a solution.
  - rfvtgb123 13y ago
    And from then on, are we going to keep people from having children or are we going to let massive overpopulation happen? Where to recover the stored minds to? That said, in my oppinion a big part of what makes life worthwhile IS that it is finite. [I am working with the assumption that by "backup and recovery plan for people" essentially you are talking about making people immortal by backing up their mind before the body dies and somehow keeping it working, e.g. recovering it to a different body.]
    - TeMPOraL 13y ago
      Fortunately the tech required to restore minds will most likely solve the overpopulation problems as well. One mistake people make when discussing cryopreservation is considering it in isolation. Reviving frozen minds will likely require some form of basic molecular nanotech, and this same technology can in principle convert dirt to habitats on Earth and in space. As for my opinion about dying: fuck that. I don't want to die. I don't see any reason for any of us to pass away. If we can fix this, then let's do it.
RKearney 13y ago
Just a heads up, but our Barracuda Web Filter blocked this domain due to Pornography.
- fnordfnordfnord 13y ago
  The problem with web filters is ████████████████████████████████████████. I didn't see any porn there, (and I'm fairly confident that I would have been able to recognize it.)
  - RKearney 13y ago
    I wasn't implying the domain was actually a pornographic site. I was pointing it out so the site owner could potentially get it resolved.
    - fnordfnordfnord 13y ago
      My mistake. I hate dodgy content filtering, and reacted before I considered alternate meanings for your comment. Upvoted you for being helpful.
  - ars 13y ago
    > I didn't see any porn there It has the words "skinny dipping", that might be it. I don't get what you are trying to say with the black boxes.
    - fnordfnordfnord 13y ago
      I was paraphrasing/regurgitating the common quip "The problem with censorship is ████████████████." Which is meant to illustrate one of the many reasons that censorship is bad, in this case, only the censor gets to know what information has been censored and therefore even if it is a mistake, everyone loses the opportunity to view the content.
at-fates-hands 13y ago
Having lost a grandfather and an aunt to ALS, I can completely relate to what this family is going through. It is heartbreaking, and emotionally draining to watch someone go through it. It also scares the crap out me knowing this is a genetic disease and two of my family members have already succumbed to it. This is known as Familial ALS. Genetically speaking, it comes down to a 50/50 chance I could get it. I can get screened to know for sure if I'll get it, but it requires you do counseling before you even take the tests, considering how it could change your life overnight. Here's some facts about Familial ALS: http://www.alsa.org/als-care/familial-als/familial-als.html http://www.alsa.org/als-care/familial-als/familial-als.html - Familial ALS- occurring more than once in a family and accounts for 5 to 10% of all cases. - In 1991 a team of ALS Association-funded researchers linked familial ALS to chromosome 21. In 1993 the research team identified the precise defect, a change in the DNA for the protein called copper-zinc superoxide dismutase 1 (SOD1). Researchers since have found more than 100 mutations in different places in the coded DNA instructions for making SOD1. It's frustrating because it seems like every time they get close to finding THE mutated gene, they identify several hundred others. It's like a game where the goal posts in a game are constantly changing.
- crpatino 13y ago
  So... do the counseling! Knowing that the answer is out there for the taking is already changing your life, probably for the worst. "What is true is already so. Owning up to it doesn't make it worse..."
  - olalonde 13y ago
    Have you not heard of "ignorance is bliss"? I don't see the point of knowing the answer here.
    - justinjlynn 13y ago
      Because one day you will stumble or your grip will be weak and you'll spend all your time wondering if it was just the beginning signs of developing ALS or if you were just tired or clumsy. I would think that would be the point, at least for me. - EDIT: for clarity.
websitescenes 13y ago
Thank you.
grigy 13y ago
Early this year my father was diagnosed ALS. During one year his hand muscles are completely gone. Though the legs are still OK but the disease does progress rapidly and it's just matter of time. This is terrible disease. I know how hard it is for his family.
marcosscriven 13y ago
"This is your opportunity to think big. Like, go skinny dipping in the methane oceans of Neptune." I can't comment on his blog directly, so my answer to him is: Find the nearest intelligent lifeform to our solar system, and let them know exactly where we are, and that we'd like to have a chat please.
- Stranger2013 13y ago
  "Find the nearest intelligent life form" ...that is not carnivorous and is not interested in our resources and is not interested in exterminating us for whatever reason.
hawkharris 13y ago
This article was very sad, moving and, in a sense, motivational. Thinking about Aaron's situation makes me put all of my problems in perspective and realize how trivial most of them are.
mtraven 13y ago
Jaimie Heywood started his own drug research pipeline to try to cure his brother's ALS. That failed, but the effort has inspired a number of other unconventional research efforts. http://www.ted.com/talks/jamie_heywood_the_big_idea_my_brother_inspired.html http://www.ted.com/talks/jamie_heywood_the_big_idea_my_broth...
- narrator 13y ago
  Maybe he could get into a clinical trial with NeuralStem Inc's therapy. They seem to be having some good results with treating people with ALS with spinal stem cell injections: http://www.neuralstem.com/cell-therapy-for-als http://www.neuralstem.com/cell-therapy-for-als
- andrewem 13y ago
  The research lab that Jamie founded is ALS TDI [1], which has a database of ALS clinical trials [2]. Jamie later co-founded PatientsLikeMe, a web site for sharing medical data which has over 6,000 users who are patients with ALS [3], the first of whom was his brother Stephen [4]. (Full disclosure: I work for PatientsLikeMe.) [1] http://www.als.net/ http://www.als.net/ [2] http://www.als.net/ALS-Research/ALS-Clinical-Trials/ http://www.als.net/ALS-Research/ALS-Clinical-Trials/ [3] https://www.patientslikeme.com/conditions/9-als-amyotrophic-lateral-sclerosis https://www.patientslikeme.com/conditions/9-als-amyotrophic-... [4] https://www.patientslikeme.com/patients/view/40 https://www.patientslikeme.com/patients/view/40
ChuckMcM 13y ago
I hope we can figure out the mechanics here of ALS and reverse or arrest them. I was reminded of the article below I read in Scientific American where questions are asked about Stephen Hawkings success in staying alive. http://www.scientificamerican.com/article.cfm?id=stephen-hawking-als http://www.scientificamerican.com/article.cfm?id=stephen-haw...
ttrreeww 13y ago
A much as I hate to say it, the exit bag might be the best choice here.
rogerthis 13y ago
Anyone should read Viktor Frankl's works.
jessriedel 13y ago
It looks like Aaron is familiar with Hal Finney and his battle with this awful disease. https://bitcointalk.org/index.php?topic=155054.100 https://bitcointalk.org/index.php?topic=155054.100 http://www.finney.org/~hal/ http://www.finney.org/~hal/ http://www.noozhawk.com/local_news/article/101710_hal_finney_als/ http://www.noozhawk.com/local_news/article/101710_hal_finney... (I'm unsure whether Aaron got a response from Hal.) Hal's response to his diagnosis has been defiant. He got the tracheotomy and is determined to live a long, productive, and worthwhile life. I have great reverence for Aaron's concern for the burden he would be on his family, and I certainly don't claim to understand what it would be like to be in his shoes. But I personally am a big supporter of Hal's philosophy. I encourage Aaron and other ALS sufferers to consider this path. Never in history has an intellectually constructive and satisfying life with ALS been as technologically feasible as it is now. [Edited to reflect the first link.] Edit 2: It's also worth noting that ALS is what has crippled Stephen Hawking. He got a tracheotomy in 1985, at which point his "A Brief History of Time" was only partially completed. He finished it, and has made many important professional contributions since. http://www.hawking.org.uk/living-with-als.html http://www.hawking.org.uk/living-with-als.html
rikelmens 13y ago
Dear Aaron, you've probably heard about the Neuralstem and their NSI-566 product which is still in the trial phase. But in case you haven't here is the info: http://www.neuralstem.com/cell-therapy-for-als http://www.neuralstem.com/cell-therapy-for-als
alexvr 13y ago
My grandfather died of ALS a few years ago in his late 70s. It's sad and ironic, but he was a runner until the last three or four months of his life, when the disease rapidly crippled him and took his life. He was the sort of guy you would expect to live well into his 90s: He ate a perfect diet and exercised like he was 35. At the time, my grandmother was battling bone cancer, and we were quite concerned that my grandfather would be depressed living for multiple decades without his wife. Unfortunately and surprisingly, he died almost two years before my grandmother.
webXL 13y ago
My brother was diagnosed with this awful disease about a year ago. He's 45 and has two children a few years older than Aaron's, so this definitely hits home. He already has a very hard time speaking, which means the disease started off by attacking his respiratory system. Aaron seems to be doing OK in that regard, but who knows how quickly that will go. What's frustrating is that he can't qualify for experimental treatments unless his lung capacity is at a certain level (e.g. Min. Vital Capacity here: http://www.alsconsortium.org/trial.php?id=1 http://www.alsconsortium.org/trial.php?id=1). This is one reason why we need to get more money into ALS research and treatment. Please consider a donation to the ALS Association at http://www.alsa.org/ http://www.alsa.org/. Thank you.
deleted 13y ago
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indrax 13y ago
I think these campaigns are great, both for giving these people a chance and drawing attention to cryonics. But it can't go on, this is not a stable or reliable way to fund cryonics. Sooner or later the novelty will wear off and the money will run out, or someone just won't be sympathetic enough, and the goal will not be met. Life insurance is the way to handle this for most people. Charity needs to be for the exceptional cases.

345 points by ca98am79 13y ago

psb 13y ago

I think it would be nice if we could do something like polymath (from Terry Tao) for medicine. Maybe have a combination of medical experts + statisticians + bright people collaborate on a large scale to tackle some of the health problems out there.

msie 13y ago

The body is still such a mysterious device. It's so frustrating that we still can't figure out diseases like ALS. The greatest invention would be a body debugger.

toomuchtodo 13y ago
The greatest invention would be a body debugger. Imaging + Genome Sequencing + Blood Tests Still pretty barbaric compared to what we'll see in the future, but useful while we drag ourselves forward. Anecdote: I was bit by a tick about 2 weeks ago. To get a lyme disease/meningitis test done, I had to pay my copay ($30) at my primary doctor (for him to approve the tests) and then had to make another appointment to have my blood drawn and tested by Lab Corp (~$200). I then had to wait for my doctor to call my back because Lab Corp would not provide my results directly to me (!!!). Like I said. Barbaric.
- objclxt 13y ago
  This seems less an indictment of medical science than of the healthcare system you have to live with. Because where I come from, if I was bitten by a tick I could book my primary doctor's appointment online, get the blood test done the same day at a walk in clinic without an appointment, and then phone the doctor's surgery two days later to get my test results...without paying anything.
  - toomuchtodo 13y ago
    I agree I have comingled two things: Medical technology and healthcare systems. My apologies.
  - readme 13y ago
    Unfortunately over half of Americans don't realize the current healthcare situation is a problem, and actually believe it's good, because it gives them more freedom. I almost thought that once, but it's really easy to run through the facts: 1. Since the primary purchasers of health insurance are companies, the insurance companies grossly tilt their plans in the direction of companies. Individual plans are lackluster. The individual plans where I live don't even cover mental health services. Not even one. 2. Since companies are fallible, we cannot depend on them to honestly offer insurance to every worker who deserves it. For example, in Massachusetts, there is a mandate for companies with full time employees to provide a health insurance plan: http://www.rawstory.com/rs/2013/03/29/companies-cut-hours-of-full-time-employees-to-avoid-providing-health-care-under-new-rules/ http://www.rawstory.com/rs/2013/03/29/companies-cut-hours-of... naturally, companies schedule for .1 less hours and leave you in the dust. It seems that this is a total mess. Companies cannot be put in the crossfire of the health insurance debate with these unimplementable laws. The only reasonable solution is to pay for it with the federal income tax. Competition and free markets are good, but not in this space. Would you like to find out the free market price for an ambulance after you were involuntarily hit by a bus and woke up in an ICU? We live in a strange land of "freedom"
    - VLM 13y ago
      "The only reasonable solution is to pay for it with the federal income tax." Pay out of property tax. Follow the money and keep the money loop as small as possible to maximize return on investment and minimize accounting losses. 99% of your lifetime medical expenses are going to be at the hospital closest to your home, most likely. Makes closing the loop simple and obvious. If for political reasons you have to go county sales tax to pay for the county hospital, that works too. Much like the most effective way to fund a local school system seems to be local prop tax rather than the feds or the UN or something. "Companies cannot be put in the crossfire of ... with these unimplementable laws." Its never slowed down any other regulation for any other reason in the past, ever, so may as well not start slowing down with health care.
- newbie12 13y ago
  Do you still have the tick? You can send it to a lab for analysis, it costs just $60. The human lyme tests are very inaccurate, especially within two weeks of the bite-- you might not have formed antibodies yet.
  - toomuchtodo 13y ago
    I kept it for a few days, but disposed of it after I had blood test done. I found a lab that will accept my own blood sample for a western blot, so in a week or two I'll send them a 5ml EDTA test tube for processing (I can draw my own blood at home).
  - VLM 13y ago
    "Do you still have the tick? You can send it to a lab for analysis, it costs just $60." This is the most important lesson of the whole discussion, having gone thru this. There's a direct analogy with rabies, if you know the animal is uninfected you can save yourself quite a bit of time, pain, and money. If you know its infected, well, treatment usually is wiser than waiting for death. Bit by a dog? Eh, make it let go, and then walk away, no need to check for a rabies vaccination tag. After all, what are the odds? LOL
    - rotnewson 13y ago
      > Bit by a dog? Eh, make it let go, and then walk away, no need to check for a rabies vaccination tag. After all, what are the odds? LOL I don't know where you live but it is pretty standard to get a few vaccines (rabies included) when bitten by an unknown dog as a precaution. Same reason people get tetanus shots with puncture wounds.
- duck 13y ago
  Had the tick been on you for a while? Did it have the target rings around the bite? I can't imagine getting tested every time I was bit by a tick.
- Alex3917 13y ago
  Are there lyme tests that are accurate in less than a month? I also got bit by a tick a couple days ago, but I just went to the doctor and got a doxycycline prophylaxis. I'll probably also send the tick in for analysis.
  - newbie12 13y ago
    Just do the antibiotics and don't worry about it, it will kill the bacteria if it exists. The standard lyme test looks for the antibodies, which won't exist if you take the antibiotics within a few days of the bite.
    - Alex3917 13y ago
      "Just do the antibiotics and don't worry about it, it will kill the bacteria if it exists." There's still a chance of having it even after the antibiotics. The chances of getting it even after taking a prophylaxis go down from around 3% to perhaps a little under 1%, but there's still a chance. And there are also other tick diseases that doxycycline doesn't work for. The most likely case is that mine was only attached for a little under 24 hours, which reduces the chances even further, but considering that if not treated right away it's basically as bad as AIDs it's still kind of alarming.
- tankbot 13y ago
  Seems like much ado. If I was bitten by a tick (or twenty, as has happened before) I would pull it off and flick it, then immediately forget about the whole thing. Do you see a doctor after every time you get into a car? Because that is far more likely to kill you than just about anything you can think of.
  - kaybe 13y ago
    It really depends on which area you live in. Some are high-risk for diseases, others are fine.
    - rquantz 13y ago
      Additionally, though, a deer tick will not transmit Lyme disease until it has taken its blood meal, usually 24-36 hours after first biting. If you take it off right away, and it hasn't "inflated," you're almost certainly safe.
  - Aqueous 13y ago
    as a person who spent 20+ years fighting lyme disease, which ended up attacking my CNS, i can tell you this is absolutely not a good idea.
    - tankbot 13y ago
      I'm sorry about your experience, it wasn't my intention to be flippant about the disease, but rather to point out that people's paranoia is often misdirected.
      - Aqueous 13y ago
        no problem - paranoia is sometimes excessive. however, "Just because you're paranoid doesn't mean they aren't out to get you," is also true, in my experience :)
        tankbot 13y ago
- darkarmani 13y ago
  > I was bit by a tick about 2 weeks ago. To get a lyme disease/meningitis test done Why do they even test for it? Don't they just start antibiotic treatment for it?
  - VLM 13y ago
    You've just defined the recipe for developing antibiotic resistant "other things". Doxocycline-resistent... donno UTI or STD or gum disease or whatever. That would suck if STDs became resistant, now incurable. To a crude first approximation, a new antibiotic gets a fixed number of uses in the environment before it becomes ineffective in the environment. Its bad medicine to "waste" a valuable use of a fixed supply of an expensive product. You can save 50 million lives of actually sick people, or just provide 50 million placebos. Also most dr. have a huge aversion to making people sick, and there are very few antibiotics indeed (none?) that don't have a measurable chance of killing the user or making them sick. Amoxocilian makes me pretty sick. Doing a course of it "for fun" would be incredibly unwise. Of course if it were "take the amoxocilian and get sick, or the infected leg has to be chopped off" well maybe that's worth some puking and fever. So if your odds of infection are 0.5% but the odds of horrendous digestive system meltdown are 5% and death is a 0.1% likelihood, you're better off getting tested. This is like the old "why not remove everyone's appendix?" question. Because removing everyone's would kill more people than appendicitis currently kills for a net negative.
    - darkarmani 13y ago
      > So if your odds of infection are 0.5% but the odds of horrendous digestive system meltdown are 5% and death is a 0.1% likelihood, you're better off getting tested. Except when you get bitten by a tick and have stage-1 Lyme disease symptoms like a huge swollen bulls eye, your odds of infection are more like 99.9%. If someone is getting tested for getting bit by a tick, they most likely have some sort of symptoms. > You've just defined the recipe for developing antibiotic resistant "other things". Doxocycline-resistent... donno UTI or STD or gum disease or whatever. That would suck if STDs became resistant, now incurable. I thought that was more likely from the hundreds of millions of pounds of antibiotics used in factory farming, not preventative medicine. When a bunch of us were exposed to a person who 48-hours later came down with severe meningitis (coma), they dosed us all with cow pills of antibiotics. I'm sure they could have waited until we all got 105F fevers by the time the tests came back, but they took the risk of antibiotic resistance and pre-treated us all.
- gohrt 13y ago
  What's barbaric? Labor and materials cost money. Someone has to pay. LabCorp is not staffed with people trained to divulge and discuss your potentially serious diagnosis. All but the smallest independent medical clinics have phlebotomists on site. If you want faster medical service, move to a more dense/develeped town. Most of us live in cities, for reasons quite like this.
  - toomuchtodo 13y ago
    I live in Chicago. Are you saying I'm not living somewhere dense enough? Also, they're my lab results. There is no reason to withhold them from the patient.
- quesera 13y ago
  I have some family experience with Lyme and meningitis. I'm confused. A blood test is not useful for a recent tick bite. It takes 4-6 weeks for the antibodies to be present in detectable quantities. For Lyme, you observe the possible site of infection for a few days, if it is swelling or reddening (with or without the characteristic "bulls-eye" pattern), then you get antibiotics. Doxycycline is popular, but it's a long (21-day) course, so a good doc will not prescribe it casually. Meningitis is either bacterial or viral. The true test is analysis of spinal fluid (this one goes to 11!), but it's a very fast-moving and dangerous infection. Regardless, a blood test is unlikely to be conclusive. You can save the tick and send it off to a local lab for analysis. That'll tell you with a high degree of certainty if the tick had the spirochette. In some parts of the country, most do. It won't tell you if it has been transmitted to you, of course. Disease transmission typically happens after the tick has been attached for 36-72 hrs. Those of you who haven't lived in deer tick country might not realize how tiny the things are this time of year. Pinhead sized or smaller. Easy to miss even if you're diligent. No solution for it except to be more diligent, however. Good luck with the doxycycline. I don't understand why your PCP ordered a blood test, but the meds make sense.
melling 13y ago
World GDP is about $83 trillion dollars. http://en.wikipedia.org/wiki/Gross_world_product http://en.wikipedia.org/wiki/Gross_world_product It's probably just a matter of figuring out how to funnel enough money and people on the problem. Smartphone advances, for example, will be incredible over the next decade. Much better graphics, CPU, batteries, etc. That's because there's a huge market for them. Another example is 4k TV's, which are out of reach. Within 5 years, they'll be cheap, and a lot better. Figure out a way to have consumers directly spend more money on medical research/technology and great things will happen.
- EvilLook 13y ago
  Better smart phones and better sensors means you can opt-in to be part of a research study with your smart phone being the telemetry device, providing valuable medical data to scientists and doctors.
- Stranger2013 13y ago
  We need to fix the root of the problem - evolution-derived protein bodies.
- takluyver 13y ago
  There is already a lot of money being spent on medical research. Cancer is a prime example. Cancer Research UK estimates that about 1/3 of us will have cancer during our lifetime, So there's a very large 'market' or political willingness to fund research. There are some dramatic changes at the scientific level (gene sequencing is getting much faster and cheaper), but progress at the treatment level isn't so quick. The dramatic advances in consumer electronics aren't just about spending. We spend a similar amount on cars, but a new car today isn't much different from a new car ten years ago. Forty years after we landed on the moon, we don't have day trips there. Consumer electronics change fast largely we've been able to make increasingly tiny patterns in silicon, but most of our other technology develops much slower.
  - newbie12 13y ago
    The problem is that insurance companies and governments stand between health care and consumers. So the incentives aren't as strong as other markets. Purely market-based health care, like eye lasic or breast implants, have seen remarkable improvements in safety and lower costs.
ttrreeww 13y ago
We are not even trying. Evidence based medicine is too busy finding more "treatments" instead of cure.

bsaul 13y ago

The question of people being frozen in the hope of being revived is mentioned in a very peculiar way in the "Transmetropolitan" comics (by Waren Elis) . I really hope for Mr Winborn that the future's going to be a better place :))

objclxt 13y ago
Perhaps I am a pessimist, but I don't see the future turning out well for those who have chosen to cryogenically preserve their bodies. That's not to say that the people practising it don't believe in what they're preaching - I'm sure many people involved in the cryonics industry deeply believe in the technology. But consider this: what value is there in reviving the dead and frozen rather than preserving the living? As it stands today, cryonics is an act of faith, not science. And you're more than welcome to believe in it, just like any other faith, but I personally don't see why future society would put the needs of the frozen above those of the living. And unlike some other faiths, it's a very expensive option to partake in.
- toomuchtodo 13y ago
  As it stands today, cryonics is an act of faith, not science. And you're more than welcome to believe in it, just like any other faith, Science has a much better track record than organized religion: http://www.nobeliefs.com/images/DarkAges.gif http://www.nobeliefs.com/images/DarkAges.gif
  - quarterto 13y ago
    Unlabelled Y-axis, no sources mentioned. I sincerely doubt this graph is based on anything but some crap that popped into the author's head one day.
    - toomuchtodo 13y ago
      Ignore the graph. How many vaccines has organized religion developed?

Eliezer 13y ago

Slashdotted for me, anyone got a backup link?

kareemm 13y ago
Cached: https://webcache.googleusercontent.com/search?q=cache:5_8ePS-bGMsJ:aaronwinborn.com/blogs/aaron/monday-was-my-46th-birthday-and-likely-my-last-anything-awesome-i-should-try-after-i-die+&cd=1&hl=en&ct=clnk https://webcache.googleusercontent.com/search?q=cache:5_8ePS...
- Eliezer 13y ago
  Thanks! (Reads.) Now that is the spirit.
beala 13y ago
Coral mirror: http://aaronwinborn.com.nyud.net/blogs/aaron/monday-was-my-46th-birthday-and-likely-my-last-anything-awesome-i-should-try-after-i-die http://aaronwinborn.com.nyud.net/blogs/aaron/monday-was-my-4...
Aardwolf 13y ago
I don't see the article on slashdot so I guess HackerNewsed would be a more correct term.
- jacobparker 13y ago
  People use "slashdot/slashdotting" to refer to the general phenomenon; it's quite common. http://en.wiktionary.org/wiki/slashdot http://en.wiktionary.org/wiki/slashdot

andyjohnson0 13y ago

Previous discussion of Aaron's situation here: https://news.ycombinator.com/item?id=4229108 https://news.ycombinator.com/item?id=4229108

virtualwhys 13y ago

That video is heartbreaking. "You may have heard of her, her name is Wonder Woman", tears. He lived in a Buddhist monastery at one point; life is suffering. He'll soon leave his loved ones, and he knows it's very much sooner than later. What can you do in such a situation? Clinging to life, little time remaining, what to do? I thought something ridiculous, like go on retreat until the end, but right where he is, with his wife and kids is probably just perfect. They're all being transformed by the experience. Yours is not to reason why rings true. Who's to say that an "early" death is not in fact a gift for the living?

virtualwhys 13y ago
Apologies to anyone offended by my views, this struck an unintended chord for some of you, was just expressing myself in the moment based on my own experience of the death of a loved one.
- Helianthus 13y ago
  I hope you've noticed that a number of people came forward to relate a similar perspective on death. I really respect your decision to bow out of the emotionally charged conflict in the thread. ...However, I am not inclined to be so wise. If you're reading this, please try to understand my position even if you feel affronted by it; bare in mind also that there is some of my own emotion in this and I recognize I'm venting a bit. For some people, emotions are a very public thing. They are shared with anyone and everyone nearby. For some people, they are a quiet, contemplative thing. They are felt and shared only with those close to them. What happens in public settings is that people that feel quietly are shunted out. They aren't heard, they don't express themselves because, by their nature, they don't have to. Attachment to death seems immature to me. It seems like we have to trumpet again how awful death is, say the things that everyone knows. Because that's the other thing about emotionally loud people: they have to make sure everyone's feeling the same things, that we're all on the same page. virtualwhys experience with a close friend's suicide was criticized: he was told he was __grieving wrong__. The appalling rudeness of this is overlooked because virtualwhys, a quiet person, emotionally, stepped out rather than continue to feel like he was stepping on other people's emotions. Quietly emotional people respect other peoples' feelings. Meanwhile, a lot of _other_ people are quietly relating their own grief in similar terms as virtualwhys. Look, death is an experience. You can't change it. Even if we cure everything someday, that won't change the fact that we've lived and died. Wringing your hands about death is only additional suffering. Because that's the beautiful thing about accepting death: you can make it more about life than loss. It is an experience of the vital things, the core things, the deep bonds and strong connections. Aaron will die, with his family around him, still looking to the future and full of life. That is very profoundly beautiful. It is a gift. More to the point, it just _is_. It cannot be changed, but it can be appreciated. Here's where I fall on virtualwhys side: to me, any other understanding of grief seems to be pretending you could possibly have control. Death forces us to see that we have no control--and when that is pointed out, _some_ of us can't handle it. Yeah, that last part is a bit rude, and I apologize... somewhat.

Andrenid 13y ago

That was incredibly inspiring, and incredibly depressing. As a Drupal fanatic who built my career on it, and a person also dealing with a terminal illness (though I have a couple years left, if all goes well), it's upsetting to see that someone who gave me so much, now has to go through all that. I feel genuine pain and am quite legitimately upset now. I wish Aaron and his family all the best (considering).

SiVal 13y ago
I wish you the best, too, along with Aaron. I've occasionally asked other people what they thought the worst problem in the world was. Nobody has ever answered with my answer: that all of our loved ones are going to die. The utter inevitability of death within a few decades of birth is so thoroughly taken for granted that people are vastly more concerned about the NSA or carbon dioxide than about literally saving the lives of everyone they care about. We need a working backup and recovery plan for people as soon as possible. How soon it will happen will probably depend a great deal on how soon a critical mass of people can be made to see it as an actual engineering problem urgently requiring a solution.
- rfvtgb123 13y ago
  And from then on, are we going to keep people from having children or are we going to let massive overpopulation happen? Where to recover the stored minds to? That said, in my oppinion a big part of what makes life worthwhile IS that it is finite. [I am working with the assumption that by "backup and recovery plan for people" essentially you are talking about making people immortal by backing up their mind before the body dies and somehow keeping it working, e.g. recovering it to a different body.]
  - TeMPOraL 13y ago
    Fortunately the tech required to restore minds will most likely solve the overpopulation problems as well. One mistake people make when discussing cryopreservation is considering it in isolation. Reviving frozen minds will likely require some form of basic molecular nanotech, and this same technology can in principle convert dirt to habitats on Earth and in space. As for my opinion about dying: fuck that. I don't want to die. I don't see any reason for any of us to pass away. If we can fix this, then let's do it.

RKearney 13y ago

Just a heads up, but our Barracuda Web Filter blocked this domain due to Pornography.

fnordfnordfnord 13y ago
The problem with web filters is ████████████████████████████████████████. I didn't see any porn there, (and I'm fairly confident that I would have been able to recognize it.)
- RKearney 13y ago
  I wasn't implying the domain was actually a pornographic site. I was pointing it out so the site owner could potentially get it resolved.
  - fnordfnordfnord 13y ago
    My mistake. I hate dodgy content filtering, and reacted before I considered alternate meanings for your comment. Upvoted you for being helpful.
- ars 13y ago
  > I didn't see any porn there It has the words "skinny dipping", that might be it. I don't get what you are trying to say with the black boxes.
  - fnordfnordfnord 13y ago
    I was paraphrasing/regurgitating the common quip "The problem with censorship is ████████████████." Which is meant to illustrate one of the many reasons that censorship is bad, in this case, only the censor gets to know what information has been censored and therefore even if it is a mistake, everyone loses the opportunity to view the content.

at-fates-hands 13y ago

Having lost a grandfather and an aunt to ALS, I can completely relate to what this family is going through. It is heartbreaking, and emotionally draining to watch someone go through it. It also scares the crap out me knowing this is a genetic disease and two of my family members have already succumbed to it. This is known as Familial ALS. Genetically speaking, it comes down to a 50/50 chance I could get it. I can get screened to know for sure if I'll get it, but it requires you do counseling before you even take the tests, considering how it could change your life overnight. Here's some facts about Familial ALS: http://www.alsa.org/als-care/familial-als/familial-als.html http://www.alsa.org/als-care/familial-als/familial-als.html - Familial ALS- occurring more than once in a family and accounts for 5 to 10% of all cases. - In 1991 a team of ALS Association-funded researchers linked familial ALS to chromosome 21. In 1993 the research team identified the precise defect, a change in the DNA for the protein called copper-zinc superoxide dismutase 1 (SOD1). Researchers since have found more than 100 mutations in different places in the coded DNA instructions for making SOD1. It's frustrating because it seems like every time they get close to finding THE mutated gene, they identify several hundred others. It's like a game where the goal posts in a game are constantly changing.

crpatino 13y ago
So... do the counseling! Knowing that the answer is out there for the taking is already changing your life, probably for the worst. "What is true is already so. Owning up to it doesn't make it worse..."
- olalonde 13y ago
  Have you not heard of "ignorance is bliss"? I don't see the point of knowing the answer here.
  - justinjlynn 13y ago
    Because one day you will stumble or your grip will be weak and you'll spend all your time wondering if it was just the beginning signs of developing ALS or if you were just tired or clumsy. I would think that would be the point, at least for me. - EDIT: for clarity.

websitescenes 13y ago

Thank you.

grigy 13y ago

Early this year my father was diagnosed ALS. During one year his hand muscles are completely gone. Though the legs are still OK but the disease does progress rapidly and it's just matter of time. This is terrible disease. I know how hard it is for his family.

marcosscriven 13y ago

"This is your opportunity to think big. Like, go skinny dipping in the methane oceans of Neptune." I can't comment on his blog directly, so my answer to him is: Find the nearest intelligent lifeform to our solar system, and let them know exactly where we are, and that we'd like to have a chat please.

Stranger2013 13y ago
"Find the nearest intelligent life form" ...that is not carnivorous and is not interested in our resources and is not interested in exterminating us for whatever reason.

hawkharris 13y ago

This article was very sad, moving and, in a sense, motivational. Thinking about Aaron's situation makes me put all of my problems in perspective and realize how trivial most of them are.

mtraven 13y ago

Jaimie Heywood started his own drug research pipeline to try to cure his brother's ALS. That failed, but the effort has inspired a number of other unconventional research efforts. http://www.ted.com/talks/jamie_heywood_the_big_idea_my_brother_inspired.html http://www.ted.com/talks/jamie_heywood_the_big_idea_my_broth...

narrator 13y ago
Maybe he could get into a clinical trial with NeuralStem Inc's therapy. They seem to be having some good results with treating people with ALS with spinal stem cell injections: http://www.neuralstem.com/cell-therapy-for-als http://www.neuralstem.com/cell-therapy-for-als
andrewem 13y ago
The research lab that Jamie founded is ALS TDI [1], which has a database of ALS clinical trials [2]. Jamie later co-founded PatientsLikeMe, a web site for sharing medical data which has over 6,000 users who are patients with ALS [3], the first of whom was his brother Stephen [4]. (Full disclosure: I work for PatientsLikeMe.) [1] http://www.als.net/ http://www.als.net/ [2] http://www.als.net/ALS-Research/ALS-Clinical-Trials/ http://www.als.net/ALS-Research/ALS-Clinical-Trials/ [3] https://www.patientslikeme.com/conditions/9-als-amyotrophic-lateral-sclerosis https://www.patientslikeme.com/conditions/9-als-amyotrophic-... [4] https://www.patientslikeme.com/patients/view/40 https://www.patientslikeme.com/patients/view/40

ChuckMcM 13y ago

I hope we can figure out the mechanics here of ALS and reverse or arrest them. I was reminded of the article below I read in Scientific American where questions are asked about Stephen Hawkings success in staying alive. http://www.scientificamerican.com/article.cfm?id=stephen-hawking-als http://www.scientificamerican.com/article.cfm?id=stephen-haw...

ttrreeww 13y ago

A much as I hate to say it, the exit bag might be the best choice here.

rogerthis 13y ago

Anyone should read Viktor Frankl's works.

jessriedel 13y ago

It looks like Aaron is familiar with Hal Finney and his battle with this awful disease. https://bitcointalk.org/index.php?topic=155054.100 https://bitcointalk.org/index.php?topic=155054.100 http://www.finney.org/~hal/ http://www.finney.org/~hal/ http://www.noozhawk.com/local_news/article/101710_hal_finney_als/ http://www.noozhawk.com/local_news/article/101710_hal_finney... (I'm unsure whether Aaron got a response from Hal.) Hal's response to his diagnosis has been defiant. He got the tracheotomy and is determined to live a long, productive, and worthwhile life. I have great reverence for Aaron's concern for the burden he would be on his family, and I certainly don't claim to understand what it would be like to be in his shoes. But I personally am a big supporter of Hal's philosophy. I encourage Aaron and other ALS sufferers to consider this path. Never in history has an intellectually constructive and satisfying life with ALS been as technologically feasible as it is now. [Edited to reflect the first link.] Edit 2: It's also worth noting that ALS is what has crippled Stephen Hawking. He got a tracheotomy in 1985, at which point his "A Brief History of Time" was only partially completed. He finished it, and has made many important professional contributions since. http://www.hawking.org.uk/living-with-als.html http://www.hawking.org.uk/living-with-als.html

rikelmens 13y ago

Dear Aaron, you've probably heard about the Neuralstem and their NSI-566 product which is still in the trial phase. But in case you haven't here is the info: http://www.neuralstem.com/cell-therapy-for-als http://www.neuralstem.com/cell-therapy-for-als

alexvr 13y ago

My grandfather died of ALS a few years ago in his late 70s. It's sad and ironic, but he was a runner until the last three or four months of his life, when the disease rapidly crippled him and took his life. He was the sort of guy you would expect to live well into his 90s: He ate a perfect diet and exercised like he was 35. At the time, my grandmother was battling bone cancer, and we were quite concerned that my grandfather would be depressed living for multiple decades without his wife. Unfortunately and surprisingly, he died almost two years before my grandmother.

webXL 13y ago

My brother was diagnosed with this awful disease about a year ago. He's 45 and has two children a few years older than Aaron's, so this definitely hits home. He already has a very hard time speaking, which means the disease started off by attacking his respiratory system. Aaron seems to be doing OK in that regard, but who knows how quickly that will go. What's frustrating is that he can't qualify for experimental treatments unless his lung capacity is at a certain level (e.g. Min. Vital Capacity here: http://www.alsconsortium.org/trial.php?id=1 http://www.alsconsortium.org/trial.php?id=1). This is one reason why we need to get more money into ALS research and treatment. Please consider a donation to the ALS Association at http://www.alsa.org/ http://www.alsa.org/. Thank you.

deleted 13y ago

[deleted]

indrax 13y ago

I think these campaigns are great, both for giving these people a chance and drawing attention to cryonics. But it can't go on, this is not a stable or reliable way to fund cryonics. Sooner or later the novelty will wear off and the money will run out, or someone just won't be sympathetic enough, and the goal will not be met. Life insurance is the way to handle this for most people. Charity needs to be for the exceptional cases.