Ask Slashdot: Communication With Locked-in Syndrome Patient? 552
cablepokerface writes "We've had a significant family catastrophe last weekend. My sister-in-law (my wife's sister) is 28 years old and was 30 weeks pregnant till last Saturday. She also had a tumor — it was a benign, slow growing tumor close to her brain-stem. Naturally we were very worried about that condition, but several neurologists assessed the situation earlier and found the tumor to be a problem, but not big enough for her to require immediate surgery, so we decided to give the baby more time. She was symptomatic, but it was primarily pain in her neck area and that was controlled with acceptable levels of morphine.
Then, last Saturday, our lives changed. Probably forever. In the hospital, where she was admitted earlier that week to keep an eye on the baby, the tumor ruptured a small vessel and started leaking blood into the tumor, which swelled up to twice its size. Then she, effectively, had a stroke from the excess blood in the brain stem. In a hurry, the baby was born through C-section (30 weeks and it's a boy — he's doing fine). Saturday night she had complex brain surgery, which lasted nine hours. They removed the blood and tumor that was pressing on the brain.
Last Sunday/Monday they slowly tried to wake her up. The CT scan shows all higher brain functions to work, but a small part of the brain stem shows no activity. She is locked-in, which is a terrible thing to witness since she has virtually no control of any part of her body. She can't breathe on her own, and the only things she can move, ever so slightly, are her lips, eyelids and eyes. And even that's not very steady. Blinking her eyes to answer questions tires her out enormously, as she seems to have to work hard to control those. The crowd on Slashdot is a group of people who have in-depth knowledge of a wide range of topics. I'm certainly not asking for pity here, but maybe you can help me with the following questions: Does anyone have any ideas on how to communicate better with her? Is there technology that could help? Like brain-wave readers or something? Does anyone have any ideas I haven't thought of regarding communication with her, or maybe even experience with it?"
Then, last Saturday, our lives changed. Probably forever. In the hospital, where she was admitted earlier that week to keep an eye on the baby, the tumor ruptured a small vessel and started leaking blood into the tumor, which swelled up to twice its size. Then she, effectively, had a stroke from the excess blood in the brain stem. In a hurry, the baby was born through C-section (30 weeks and it's a boy — he's doing fine). Saturday night she had complex brain surgery, which lasted nine hours. They removed the blood and tumor that was pressing on the brain.
Last Sunday/Monday they slowly tried to wake her up. The CT scan shows all higher brain functions to work, but a small part of the brain stem shows no activity. She is locked-in, which is a terrible thing to witness since she has virtually no control of any part of her body. She can't breathe on her own, and the only things she can move, ever so slightly, are her lips, eyelids and eyes. And even that's not very steady. Blinking her eyes to answer questions tires her out enormously, as she seems to have to work hard to control those. The crowd on Slashdot is a group of people who have in-depth knowledge of a wide range of topics. I'm certainly not asking for pity here, but maybe you can help me with the following questions: Does anyone have any ideas on how to communicate better with her? Is there technology that could help? Like brain-wave readers or something? Does anyone have any ideas I haven't thought of regarding communication with her, or maybe even experience with it?"
Yes, there are methods available (Score:5, Insightful)
Yikes, that sounds like a terrible experience. My sympathies to your sister in law and the whole family.
There are several methods available, most prominently implanting arrays of electrode over pre-motor cortex, which can then be decoded online and used to control a computer pointer.
See for example:
http://www.youtube.com/watch?v... [youtube.com]
You might want to contact Frank Guenther at BU [bu.edu]. Who has worked on this for several years, and has started the Unlock Project [unlockproject.org] particularly for people in your sister in law's situation.
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Re:Yes, there are methods available (Score:5, Informative)
My late wife had ALS. We used a Tobii [tobiiati.com] assistive communication eyegaze computer. It didn't use blink, it used eye dwell time for "click".
Since blinking is tiring, perhaps this might be of more assistance.
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Never mind. I misread TFS. I thought it was the blinking that was the problem, but it's the whole eye control, not just the blink.
I'm so sorry for you.
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I thought it was the blinking that was the problem, but it's the whole eye control, not just the blink.
Perhaps the eye control is tiring now but will get less tiring over time.
I have to think some healing is possible.... if not further technological enhancements in the field of cybernetics in the future to augment the brain stem with electronics or help regenerate damaged parts.
Re:Yes, there are methods available (Score:5, Informative)
In case OP is interested in this machine:
It's an all-in-one form factor, and in my wife's case, they provided mounting hardware for her powerchair. They also provided a rolling rack and mounting hardware for when she was in bed.
We had the 17 inch screen version, on the theory that bigger was easier to focus on. It also accepts standard USB keyboard and mouse, for configuration purposes, or if the patient has some use of hands. We also had a "big red button" connected by USB that could be used for click, if possible.
By default, it comes with only the Tobii software communications software enabled. You can purchase (relatively cheaply... $50 or less) unlock for full access to the underlying Windows system, and also the WiFi. It also came with a SIM slot, but the unlock for that was a bit more expensive.
Just as a side note, I was the guy who asked about text/voice only plans [slashdot.org] a year and a half ago, or so. It was for this computer.
Re:Yes, there are methods available (Score:4, Interesting)
There's the EPOC controller...
http://emotiv.com/epoc/feature... [emotiv.com]
Don't expect any miracles with brainwave stuff, though, it's not like in some sci-fi movie. It can be hard to train your brain to control it, and it usually takes a lot of focus to do simple tasks and may sometimes do stuff you don't want. Anything based on EEG sensors is going to be extremely coarse, reading the average output of billions of neurons at a time. But it's a possibility.
The eyegaze device mentioned below sounds like a good possibility.
Start recording her facial movements immediately (Score:5, Insightful)
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Dasher (Score:3, Informative)
Dasher is a small software package (akin to notepad) that assists in typing without a keyboard. Maybe you could combine some sort of eye-tracking or morse-code system that can translate her eye movements into numbers and letters on Dasher?
concentrate on what she needs (Score:5, Insightful)
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Excellent advice.
Re:concentrate on what she needs (Score:4, Interesting)
Seems like the first comment with good advice I see. And don't rush things, the brain is a complex structure with some capabilities to restructure and repair. Time, company, physiotherapy, nervous activity controls movement but movement of the limgbs induces nervous activity too and may help to regain what seems lost.
Let her see and feel and maybe even feed her baby.
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Something else I'd emphasize is ensuring that the primary caregiver(s) form a practical relationship with the disabled woman that they can sustain. Keep in mind that beyond communications difficulties there could be emotional or behavioral issues resulting from a stroke.
I have a close relative who went through a stroke and besides the difficulty of coping with the disability itself there was a HUGE strain on relationships. We're talking about somebody who was generally fairly nice to everybody screaming f
Mind reader (Score:2)
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This. Wikipedia has a Comparison of consumer brain–computer interfaces [wikipedia.org] that covers devices from Emotiv, Neurosky and others.
Searching for Emotiv, Neurosky or "BCI" (brain-computer interface) plus keywords like "disabled" or "ALS" or "locked" produces a couple of results on improving communication with limited physical control, e.g. this [neurogadget.com] and this [singularityhub.com]. I'm sure there are plenty of others.
Another approach is software like Dasher [cam.ac.uk], which turns gestures from various sources (including eye tracking) into text.
Stem cell therapy (Score:4, Insightful)
In addition to technical solutions, you might want to investigate stem cell therapy to regrow or heal nerves in the spinal column. The technology is still in the early stages but has been show to improve motor and sensory function in some cases. Here's a recent review article from PloS [plos.org] that might be a starting point for you.
Re:Stem cell therapy (Score:5, Informative)
Re:Stem cell therapy (Score:5, Informative)
Worth modding up. For years the term "stem cell therapy" has attracted a bunch of charlatans promising cures way beyond what's currently feasible (or realistically possible). The FDA weighed in again recently: http://www.fda.gov/forconsumer... [fda.gov]
Having said that, companies like Neuralstem are conducting actual research into regenerative medicine with clinical trials but it remains to be seen how this will work out. And there is serious medical research into cancer stem cells (CD47, etc.) that is an extension of immunotherapy using monoclonal antibodies.
So it's important to be specific. Traveling to Mexico so you can have some "stem cells" implanted in your spine and expect a magical cure...not a great idea.
Re:Stem cell therapy (Score:4, Informative)
Blink Board (Score:5, Informative)
Similar experience here just a month ago. We've had luck with a hastily printed "Blink Board". An 18"x24" laminated print (so it can be written on) with the letters of the alphabet grouped into chunks of 4-letters (ABCD EFGH etc). The family member can point to the groups, and using blinks, allow the patient to (slowly) spell out words.
On the reverse side, we printed quick "I feel" icons that we can point to (pain, itch, hot/cold, etc).
Using brain scans to communicate (Score:2)
See http://www.nature.com/news/201... [nature.com] - this article discusses using brain scans to communicate with patients originally thought to be "vegetative". http://www.nytimes.com/2014/04... [nytimes.com] is a more recent article on this topic.
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My thoughts exactly. Dasher is a really good product, easy to use.
Tell her there's hope. (Score:2)
She may be locked-in for now, but:
There are many EEG-type devices for non-invasively reading brain signals.
There are multiple research efforts with implants to pick up brain signals at a finer-grained level.
There are multiple research efforts into regenerating damaged nerve tissue, including but not limited to stem-cell therapy.
There is the possibility of unassisted healing over time.
I'm sorry I'm not in a position to offer insider information about any of these, but you will be able to find tons of informa
Re: Tell her there's hope. (Score:3)
I like one of those other suggestions get one of the games that respond to brain wave levels. Set it up as yes or no. Then get a board with different words and conditions on it. So I feel and point out the words(pain, happy, want to get drunk). And an outline of a body. So you can quickly make sentences with just a handful of yes no replies.
Brain stem strokes and recovery... (Score:5, Informative)
Although the situation in your case sounds much more severe, I had two brain-stem strokes when I was only 39 years old, both in the same day, caused by a ski-helmet that injured my neck in an otherwise perfectly safe fall (obviously I'll never wear a ski helmet again). They were pretty bad strokes, especially the second one, and treatment was not given in time to help because the idiot on the 911 line refused to believe my own diagnosis. I lost all sense of balance and Proprioception, limb coordination, fine motor skills... All were gone and the world did nothing but spin... 2 weeks later I was skiing again at around 75% capacity. Now (8 years later), I am at around 90% in most activities! and probably 95% in those involving gross motor skills rather than fine motor skills. It turns out that brain stem strokes are very common and you should be able to find great support. In most cases the brain rewires itself so quickly and so well to "work around" these types of strokes that recovery is surprisingly quick. I'm not sure that the case you describe is hopeless. And probably the worst thing to do is tell the patient it is hopeless. She needs to have hope that this could repair itself. You need to do some research, lots of it and very fast! Key to my recovery being so quick and so successful was a very strong will-power and my absolute need to get back on those ski slopes ASAP. I continually pushed far beyond the doctors recomendations in terms of physical activity, and that helped force my brain to re-wire and re-learn things quickly. I can still "feel" that the "wrong" parts of my brain or doing the work that used to be done my now-dead parts of my brain stem, but overall I guess I'm lucky. You need to get brain stem stroke specialists involved ASAP. At the time I had my stroke these were practically unknown, usually being misdiagnosed. I had to travel across the state just to find a specialist who had dealt with brain stem strokes. Not all doctors or even specialists will know what they should about this type of injury. Act fast, keep up hope, and maybe you'll find things aren't as bleak as they seem.
My condolences... and some other thoughts (Score:3, Interesting)
First of all, my condolences. That is a terrible, terrible thing to have happen. I feel especially bad for your sister-in-law, as this is pretty much a worst-case scenario -- conscious and aware, but unable to do anything. The mere thought of being in that kind of state terrifies me.
The brain is quite resilient. Your idea of some sort of brainwave device may actually have some merit; the "biofeedback" craze of the 1970s and '80s demonstrated that you can train yourself to modify your own brainwaves (and other "involuntary" bodily functions), and people have been working on brainwave-based control devices ever since. I'm not sure what's currently out there, but perhaps a creative combination of off-the-shelf sensors and some hacked-together interfaces to a laptop or Raspberry Pi type device could yield some useful results.
If you don't mind telling, what is her prognosis for recovery? Is this believed to be a temporary, or (shudder) long-term/permanent condition? This will certainly affect how you will want to proceed.
fMRI (Score:2)
Eye tracking (Score:2)
As someone else mentioned, there are EEG based cursors. This is actually readily available off the shelf technology made for gaming. If combined with accessibility features available in most operating systems you can get a "mouse" controlled keyboard.
If eyes is what she has, it's what she has. I don't know what the options are for off the shelf solutions. The doctors probably h
Time (Score:3)
It's hard to say what her long term prognosis is at this point- it takes weeks or months for swelling to go down and the brain to return to normal and/or rewire itself.
Healing without Cuts (Score:2, Insightful)
I know it's too late now, but I would have looked into this:
http://www.ted.com/talks/yoav_... [ted.com]
Other options? (Score:3)
she has virtually no control of any part of her body. She can't breathe on her own, and the only things she can move, ever so slightly, are her lips, eyelids and eyes
My condolences to your sister-in-law, her and your families, and congratulations on a healthy new baby. This is a terrible situation for everyone. I have some idea as my wife died of a brain tumor (GBM) that herniated her brain stem in January 2006, just 7 weeks after diagnosis (Remember Sue... [tumblr.com]) Thankfully, we had that time together and were able to discuss and finalize her wishes. (We even had one last kiss and "I love you" before she, unexpectedly, became unconscious.) Have you asked her what she wants to do and if she already has a DNR, advanced health-care directive and/or health-care proxy?
I know she is only 28 years old and may, over time, possibly recover further, but she may not and may get worse (soon). Please take this time as if it were your last together, just in case. Consider and prepare for the alternatives and unexpected. I'm sorry I cannot offer more.
Constructive approaches... (Score:5, Insightful)
I'm truly sorry for what has happened.
Many people are addressing how to communicate, but few are addressing what to communicate. At this time, your sister-in-law is tired, afraid, and a new mom. Her mental stamina is low and she is trying to heal. Making it harder, her potential to heal won't be apparent immediately, and can take several weeks or months to show.
Let her spend time with the baby. If things go badly this may be her crowning achievement, and if things go well, this may be her greatest mental uplift giving her the energy to heal.
Spend time listening as well as talking with her. Always give her comments to you priority over your comments to her. If her time is limited, there's much she will want to say - you have to let her get it out.
Just take things day by day. There will be good days and bad days. Bad days can actually be good news - healing is tiring, and while her brain swelling goes down and she recovers she will be extra tired. As parts of her brain switch back on and fumble to find their mental feet, she will sometimes seem off-balance.
Finally, given the affected area, modify your expectations of touch. Contact is important, but it should be somewhere she is connected to. If she can't move or feel her hands (which are two quite separate things) but she can move her eyelids, contact with her face might work better. Give her a say in that - she will guide you. Touch and intimacy are vital to her wellbeing.
I hope she makes a full recovery. She may well not. Take what you can get, listen to her, and do the best you can as a family to work with what you now have.
Congratulations on the new baby. I hope they will grow to know and enjoy their mother.
Early days (Score:2)
This will sound mildly offtopic but... (Score:4, Insightful)
Everything you will want to try is going to require enormous sums of money, money the insurance company is not going to give you willingly. They may provide her care, they may pay for some baseline therapy, but they are not going to pay for exotic therapies.
Money from a lawsuit can help pay for these therapies. Money from a lawsuit can get her home renovated to handle her expected condition for the foreseeable future.
Someone messed up. You wife's sister should not end up in a closet, bankrupting families in the attempt to improve her life.
Get a lawyer.
Re:This will sound mildly offtopic but... (Score:4, Informative)
To expand on that, a medicaid lawyer might help. Medicaid has been widened due to ACA, also known as Obamacare. They may be able to help.
Brain-Computer Interfaces (Score:3)
It's not a direct help, but I can tell you that it's certainly possible these days to communicate and control external actuators using brain activity only. What they're doing (AFAIK) is record the 2D electrical activity on the brain's surface (using EEGs [wikipedia.org] on the scalp or -- for even greater accuracy -- below the skull bone), analyze it statistically and deduce what the person is thinking of doing, e.g. move a mouse pointer in some direction and choose which of several buttons to press. It requires a learning phase, but then the accuracy is quite high. I'm not sure about the actual bandwidth that you can achieve when communicating using this method only, but it's much better than what was possible only a few years ago, and it's improving further.
Brain-Computer Interface-The HCI communication channel for discovery [acm.org]
brain-controlled Pinball [youtube.com]
(the links refer to a Berlin-based research group -- but that's just a coincidence because I live there a saw a presentation a few weeks ago. I'm sure there's even more research on the subject in the US).
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eye controlled computer:
http://www.abilitiesexpo.com/c... [abilitiesexpo.com]
ERP (Score:4, Interesting)
First, recognize the need for empirical information on the state of your loved-on. It is of very little use to make subjective observations, since humans are incredibly good at finding patterns where none exist.
Second, recognize the difficulty of what you're undertaking. Humans are at the very beginning of understanding how our bodies work, and we have essentially no model to predict when patients will, or never will, recover from injury like this. What makes it hard is that this ignorance means that you will be trying to make decisions under extreme uncertainty - but that doesn't mean you shouldn't do so. For instance, there should probably be a time past which you withdraw life support when there are no signs of recovery. No one knows how long that should be, but the key thing is whether there are signs of hope.
What would be such signs? You've already read something about the locked-in phenomenon. First, CT cannot possibly provide any information about function: it measures x-ray density, and provides only structural information. At best, it might show which tissue has died - but unfortunately, we have very primitive knowledge of how that relates to function (or recovery). ERP (scalp electrodes) are MUCH more relevant: there is a huge literature describing the sorts of obligate responses made by sensory portions of the brain (our understanding of less sensory processes is rather spotty). PET can map metabolic activity, but that has a much less obvious relation to organized, functional brain activity. I think ERP monitoring should be your primary path forward. There is lots of research on this topic, and pretty much any university psychology/neuroscience/psychiatry department would have well-informed people you could talk to, often ones able to perform ERP tests for brain function. (The technology of ERP is very not hard, and designing effective tests is somewhat subtle. But if a test is supposed to guide a decision like continuation of life-support, it's not a casual trip-to-radioshack kind of project.)
In short, find a non-self-deluding way to gather empirical signs of functioning personhood; in the absence of such signs, figure out how long to wait.
The diving bell and the butterfly (Score:3)
finding the right medical team... (Score:5, Informative)
I am not a physician. I am a neurobiologist. I work mostly on motor control. (And I teach neuroanatomy, though atm only at an undergraduate level.)
First things first. It's darned early days in all of this, and recovery from brain injuries is often fairly unpredictable. Even if she doesn't get significantly better - which may be fairly likely, and I don't have enough information to comment - what's hard now will likely become easier via repetition.
I'll generally agree with the comments that you're probably going to be better off dealing with specialists than trying to get a commerical EEG type device to serve in its place. Though down the road, it might make for an interesting project (and increasingly there are cool things being done with consumer hardware.) The expensive proprietary devices may or may not be optimal... but let everyone catch their breath first.
Where I think some research could benefit you all a lot is making sure she's seeing the right specialists. Getting in touch with the right people at your local academic hospital - which might, down the road, turn into your not so local academic hospital - is, long term, probably the most useful thing. As other people have mentioned, rest and support can be more useful than trying to fix everything right now. But if you're going nuts looking for options, see if you can start figuring out who, reasonably local, has a serious background in this type of injury, and see if you can get them to look over her MRIs. It can be pretty easy to end up sticking with a suboptimal doctor out of inertia. Asking questions and calling around can really end up being the thing that makes the difference in the long run. (And here I speak from personal experience from my own history of spine injury.)
If you'd like help navigating the process, drop me a note.
Video story on CNN (Score:3)
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Re: I'll get flak for this (Score:3)
Exactly my first thought, and I agree.
I'm not dead positive it matters, but I suspect that it does. Perhaps not on any way we'll recognize on this life.
But it's a risk I'm willing to take.
DO NOT DO THAT, until you can prove it's safe (Score:4, Funny)
No!! Wait. How do you know that praying didn't cause the problem to happen in the first place, and that prayers aren't prolonging the paralysis? How do you know the consequences of a prayer?
People, please!! If you are going to going to bring awesome cosmic powers to bear on this problem, you need to do it responsibly. You are meddling with supernatural forces that can shape galaxies, part seas, resurrect dead people, inflict or cure cancer, turn people into columns of salt, and win football games. We have already had it explained many times to us, that these things "work in mysterious ways" and that their plans are not always apparent to us, and their minds are beyond our capacity to understand. We can never assume that they want what we want.
If you are going to call on beings of infinite power, don't you think you ought to first understand the causes and effects? Wouldn't that be prudent, in a basic "not totally reckless and negligent on a potentially PLANETARY scale" sense?
Perhaps this patient was paralyzed as retribution for some conceit of hubris on her part, as one of life's lessons. By allying with her (i.e. interfering with her enlightenment), you might be paralyzed next, whether as punishment for defying the will of the gods, or maybe even as little lesson in hubris of your own.
Ok, maybe she was paralyzed by The Great Enemy, because she was close to uttering the Word of Justice that would undo all the Enemy's plans, so by calling on the Enemy's enemy, you might be able to help her, get the Word uttered, and all evil will finally be banished from the world forever and ever. Yet it is just as likely, that she was about to utter the Word of Despair, plunging America into yet another Eight Years of Apathy, and it was only by some hero's hours-long (and expensive, due to the rarity of some of the herbs and oils used) ritual that managed to stop her, and by bringing Great Powers into this, you might bring about the Eight Years of Apathy.
It could be happening because of something as mundane as the tumor "cover story", but then whichever god answers your prayer and cures her first (you know that prayer works, but do you know how it works, how it propagates, etc?), will be owed a favor by her, which might be a horrific lifelong struggle for her; whereas without your arrogant meddling, she might have recovered naturally anyway, without any long-term spiritual debts. Or -- are you sure you truly understand all the mechanics here, and that not only have you totally mastered Law of Man, but you also have perfect insight into the Law of the Gods -- perhaps the debt will be YOURS.
If a doctor were to idly carve on her brainstem without knowing what he was doing, you would be among those crying "malpractice!" But here you are, barging in with your hasty invocations of the mightiest powers that history has ever known, using a bulldozer-the-size-of-a-mountain to swat flies on the rim of a teacup. You would purify a pint of water with a lake of iodine, poisoning the drinker. You would shoot a man for snorin' too loud, light a cigarette with a hydrogen bomb, and write a "hello world" program that compiled to a 6 terabyte binary.
I beg -- no, insist -- all those considering resorting to the extremity of prayer, to first carefully consider all the ramifications. Make sure you understand how it really works, Whom you are really contacting, what you're really asking of Them, what it truly costs, etc. You may be doing more harm than good, and you might be involving innocent third parties.
Indeed, even if it were just one person's life at stake (and it's not!), I don't think it would be too out of line for me to demand that you first prove (to reasonable degree of certainty; we don't have to get all mathematical here) that the effects will be benign. At least do some controlled stu
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"Nope."
how would you know? Are you claiming to be some sort of psychic?
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It was just as unnecessary to post the superstitious comment that SuricouRaven replied to, but you didn't call that AC an asshole, nor did you say to them, "Who cares if you're praying?" No, you just wanted to single one of the "unnecessary" comments out for "you're an asshole" treatment. Ok, let's probe deeper into that.
Someone is begging for real help with a serious real-life problem, and they got an AC reply that was pretty much the same as "I'll get flak
Re:I'll get flak for this (Score:5, Insightful)
Then perhaps I might elaborate on my trolling. Yes, I'm an asshole. Sometimes that is what is needed.
Prayer is not just some harmless little habbit. It's woo. One of a large number of similar superstitions. While many may have conviction in the power of prayer, every scientific investigation and even just basic common sense says it does squat. Nor is is simply a harmless little ritual that brings some people comfort: It offers a false solution. People *die* because they trust in the power of prayer rather than medicine, just as they die because they get suckered into homeopathy or crystal healing or a hundred other piece of nonsense. Worse, children die because their parents are convinced of the power of prayer.
This scientifically-nonsensical rubbish needs to be pointed out. It's followers need to be challenged into providing verifiable, repeatable, non-cherry-picked evidence in support of their superstition - and, if no such evidence can be provided, then the followers need to be convinced of their error. And if they remain convicted in spite of all evidence to the contary then it is the duty of all right-thinking people to make a mockery of them, so that others may see the error before they too fall prey.
Prayer is something of an odd case, in that even those who claim to believe in the power usually act as if they do not. They will pray for their loved one's to be healed, but take them to the hospital regardless. There are a few exceptions who die for their superstition, but these are the exception. That does not excuse prayer: It only makes the error more apparent.
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It's unnecessary. If someone wants to believe that their thoughts are in some way helping another, who cares (so long as they are not out killing people in the name of their religion or otherwise infringing upon others). At the very least, it may be comforting to the family to know that they are in the thoughts of others.
If the OP had said "but there will be many people thinking about you", no one would have had a problem with it. But since he used the word "prayer", it's important to ridicule him?
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The PRC has an official, state-endorsed Christian church.
The USSR's relationship with religion was variable. Stalin did try to surpress it prior to the war with Germany, but then suddenly changed position and started heavily promoting and supporting the Russian Orthodox Church as a means to encourage patriotism and resolidify the Russian sense of identity.
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How dare those heathens not believe in your imaginary friend!
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If there is a creator of the universe, why wouldn't he/she/it listen to you? If there is not, why argue about it? When something terrible like this happens, people care, and they want to do something, but there's nothing they can really do. So they pray, if that feels right to them. It really doesn't matter whether it works, or whether somebody is listening. It's just what we do.
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Because a creator of universes would be very unlikely to take an interest in some animals on one planet in one universe. It takes a massive ego to expect that a god would give a damn about you.
I'd expect them to continue to make universes, not be a petty god that monitors the details of tiny lives like the absurd gods of man's imagination.
Re:I'll get flak for this (Score:4, Interesting)
What are you talking about? It's a giant collection of summaries of peer-reviewed papers. What's your problem with peer-reviewed science? Oh right. No magic psychic powers.
Wow, you heard something with no description and no citation. Wow, I'm totally sold, sign me up for your newsletter!
Do you really honestly think I'm incapable of grasping that different people pray for different things at different times?
You really have no clue what the scientific method is, do you?
Here, let's use this as a demonstration. Slipher discovered that almost every spiral "nebula" was moving away from us, which seemed really weird. Then Hubble performed the first accurate distance measurements which showed that they're really, really far away - not in our own galaxy. It soon became clear that almost everything far away from us was getting further from us. This calls for an explanation. So we get Lemaître's hypothesis - that the universe is expanding. Reversing the time axis shows everything radiating from a single point, down to a single point in spacetime around billion years ago.
A hypothesis is one way of explaining the data. As always, there were numerous. A hypothesis is considered worthless unless it makes specific testable predictions and can be falsifiable based on the data (for example, that's a common criticism of String Theory). For example, the Big Bang hypothesis was criticize on account that it couldn't account for the nucleosynthesis of heavy elements (this was later shown to be due to their formation in supernovæ, but that's a different story). There was a huge debate on all of the relevant points, involving paper after paper going through the peer-review process, each showing evidence for or against the different hypotheses.
There were, of course, predictions made by the hypothesis. Very specific predictions that would be exceedingly unlikely to occur by chance. One of them, for example, was that there would be a 2.725 degree kelvin background of microwave radiation eminating from every portion of the sky. Pretty darn specific, right? Pretty freaking unlikely to be a coincidence, right? Each of the different theories had their own predictions. The thing was, it was the Big Bang hypothesis whose predictions came to fruition. Not once, but again, and again, and again, very specific predictions of what one should observe that hadn't been prior observed. Over time, even proponents of alternative theories were forced to accept that the data fit the Big Bang. At this point, the Big Bang became the operational theory under which cosmology operates. A theory is a hypothesis which has been supported by a great deal of empirical evidence.
Does that mean that the Big Bang absolutely happened? Absolutely not! It just means that it is extremely well supported by the evidence, and no other proposed theory has come close to its predictive power.
Now, please, humor me. Go into the scientific method about your "thinking about things makes radiative energy that causes the stuff you thought about to happen like magic "theory".
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For some reason, my post lost the "14" in "14 billion years". :P
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Or considering that she has even a slight ability to answer they could ask her.
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I think that is why they simply turn off the machines. It is always illegal to kill someone, so they simply allow them to die relatively slowly and in pain to get around it.
Also, theoretically he cares about her. Should some law prevent him from doing what is right?
Re:As painful as it is... (Score:4, Insightful)
Re:As painful as it is... (Score:5, Informative)
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If she has higher brain function, and from the summary it seems she has full higher brain function, pulling the plug without asking her would be murder.
So ask. Hook her up with one of those Stephen Hawking eye-tracker things, and ask her what she wants.
Were I in her hospital gown, I know what my answer would be. The tough part would be deciding which smart-ass remark I want on my tombstone.
Re:As painful as it is... (Score:5, Insightful)
Were I in her hospital gown, I know what my answer would be.
Really? Because I don't know what mine would be. And I have thought about it. Some days I feel like I could live without sight as long as I had my limbs. Other times I think I'd be OK in a wheelchair. Then there are days when my inner cheap bastard comes out and says "do whatever's cheapest!" I'm not about to judge somebody who decides either way. This is one of those "unless you've walked a mile in their shoes" sort of situations.
Hell, I don't even know what I will want for dinner tomorrow night.
Re:As painful as it is... (Score:5, Insightful)
If she has higher brain function, and from the summary it seems she has full higher brain function, pulling the plug without asking her would be murder.
So ask. Hook her up with one of those Stephen Hawking eye-tracker things, and ask her what she wants.
Frankly, I would not do that until she has learned to cope with her condition. I have a close relative who went through a debilitating stroke and honestly I was about ready to drag her in to a psych ward I was so concerned about suicide risk. Today she gets incredibly frustrated with things, but for the most part is living happily and reasonably productively for somebody who is disabled. She needs a lot of help, but I think that a decision to commit suicide would have been a rash one.
It is simply unwise to make any life decision just after going through a traumatic event. If in a year nothing has changed somebody in this condition would be in a much better place to make a thoughtful evaluation. Maybe less time is required. However, it is foolish to contemplate something like assisted suicide a short time after something like this.
Re:As painful as it is... (Score:5, Insightful)
Wow. Just wow.
Life is suffering. We can all certainly avoid a great deal of suffering by killing ourselves painlessly now, whether we are locked in or perfectly healthy. But life is sweet as well. Dying forecloses on the possibility of further sweetness. This person clearly hasn't given up on further sweetness. This is not a good time to get into an argument about your favorite political hobby horse. I won't say that you suck as a human being, because I'm sure you have some legitimate and possibly heartbreaking reason for having said what you said. But context is everything, and this isn't the place.
Re:As painful as it is... (Score:4, Interesting)
We've had similar predicaments in the family, and my dads uncle is in jail (life time sentence) for making the 'human choice' - which was illegal.
It's easy to say someone sucks as a human being, but are you really willing to sacrifice your own life, to euthanize someone elses? (effectively ending two lives at once)
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Re:As painful as it is... (Score:5, Insightful)
Consider unplugging the machines. That's no way to live. Not for her, not for anybody around her. I know it's a terrible prospect, but euthanasia is often the dignified way out.
While I would agree with you in the long term if there were absolutely no further room for recovery. However It is very likely that she will still gain back some of the motor controls she has lost. (though likely not all of it.) Brains have an amazing capacity for rewiring around damage, but it takes time and enormous effort on the part of the patient.
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Totally, utterly incorrect. Even in the most liberal jurisdictions (I'm thinking Belgium and the Netherlands), pulling the plug on the life support system of a patient who has a reasonable prospect of regaining concsiousness and being able to communicate with her surroundings without being in constant agony is leaglly murder.
Fortunately for a lot of suffering people, you are completely full of shit. From the American Medial Association Code of Medical Ethics:
"The principle of patient autonomy requires that physicians respect the decision to forego life-sustaining treatment of a patient who possesses decision-making capacity. Life-sustaining treatment is any treatment that serves to prolong life without reversing the underlying medical condition [...] Even if the patient is not terminally ill or permanently unconscious,
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Re:As painful as it is... (Score:5, Insightful)
I'd agree with this. This is very early days, and while the road ahead is difficult, she could recover far more than is immediately obvious.
Re:As painful as it is... (Score:4, Insightful)
Couldn't agree more.
I have a close relative with who suffered a stroke which caused aphasia. She went from only knowing maybe a few dozen words to posting on Facebook in less than a few years. While many things frustrate her to no end (those cute memes you post on social networking would benefit from screen-reader-compatible text in the post), the fact is that she is fairly functional now and able to enjoy many things in life.
Oh, another little public service message to anybody who works in a government licensing examination capacity: somebody with anomic aphasia might be perfectly capable of understanding the driving laws but be unable to complete a multiple choice exam, even if the question and answers are read aloud without modification. There really should be an accommodation where somebody is allowed to be interviewed as long as they can demonstrate the necessary proficiency - somebody with anomic aphasia can often explain things in their own words rather well.
Re:As painful as it is... (Score:4, Insightful)
That is her decision and not his to make. Unplugging the machines when she doesn't want them unplugged is murder.
She should have a say (Score:2)
hence the question about communicating with her
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this is NOT insightful.
we (medical or scientific communities) do not have the understanding to guide such a decision. we simply can't tell when a patient will never recover.
I personally would not want to be kept alive without prospects of a quite high quality-of-life. others certainly have different thresholds, and none of us can gainsay that preference. to do so is murder.
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Re:As painful as it is... (Score:5, Informative)
I can re-check the research, but IIRC, most folks even, after they've had some months to get used to their new situations prefer to live than to die. (It's easy to project what you think your preferencs would be... but you in the situation is not you watching it from outside. I haven't been through anything nearly this severe, but I dealt with a spine injury which I was told meant I would never live an active life again*... and mostly learned not to try and second guess future me.**)
* This turned out to be incorrect, but there were some years in there that were chock full of suck.
** Which doesn't mean I don't have a living will, but did influence how I wrote it.
Re:As painful as it is... (Score:5, Insightful)
The question was about methods of communication, not "should she be allowed to live?"
Guitarist Jason Becker communicates very effectively using his eyes. Look up information about him.
Terrible Suggestion (Score:2)
Consider unplugging the machines. That's no way to live. Not for her, not for anybody around her. I know it's a terrible prospect, but euthanasia is often the dignified way out.
Who said anything about the condition being permanent? You're awfully quick to suggest somebody kill off their relatives.
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We could always ask your parents.
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So, now it's sociopathy to want to end suffering, rather than force them to live in agony for our own selfish motivations?
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Good advice, though it sounds like she's conscious and capable of communication, so at least if she has family that will honor her wishes she's not nearly as bad off as she could have been in that regard.
Re:As painful as it is... (Score:5, Insightful)
There seems to be a lot of people here who, by their comments, seem like a massive electrical 'stimulation' to their head might be an improvement.
He said "last Saturday", it hasn't even been a week since she had major brain surgery, and from the sounds of it she does have some minor facial control (eyes, lips), and can answer yes/no questions, it's just hard/tiring, "she" is still "in there", just not with a body that is under her control very much. I wouldn't be rushing to "pull the plug" just because she can't breathe on her own - first off it should be *her* decision as long as she is conscious and able to answer yes/no questions at least, and secondly after brain surgery she's likely to have a lot of brain swelling that could take quite some time to decrease and might lead to improvement.
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They can make another kid, there is only one of her!!
What a sad and tragic story. I'd have saved my wife, no question or 2nd thought in that contest. I'd rather have the woman I'd known and loved for time, than a fetus I'd not met and hadn't even processed the atmosphere yetâ¦.now, he's stuck with a vegetable for a wife, and raising a kid on his own. Worst of both worlds.
Why was this such a hard choice to me? Seems a no brainer to me (n
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What kind of nonsense is this?
The original article makes it absolutely clear that she is able to communicate. The only person who should decide whether she will live like this or be unplugged is the woman herself.
That was "should". In the real world, the costs of keeping her alive matter. But suggesting to unplug a human being who can think and communicate is in no way different from advocating murder.
Hale and happy as I am today, I think that I would like to be unplugged in her situation. But I may fee
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Wish I could mark as both insightful, troll, and funny, all at once.
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Re:Solution (Score:5, Informative)
Slashdot is always remarkably helpful.
There are a variety of eye trackers on the market, but those might be tiring to use. There are also some EEG devices coming out that might help you, with a bit of hacking.
Quick google search turns up:
http://mindflexgames.com/ [mindflexgames.com] - game from Mattel
http://interaxon.ca/products.h... [interaxon.ca] - input device, doesn't look like it's available yet
http://emotiv.com/store/headse... [emotiv.com] - this one looks like the most developed. A bit expensive, of course, but nothing like a clinical EEG.
http://www.transparentcorp.com... [transparentcorp.com] - Some software and another device (NeuroSky).
http://harteware.blogspot.ca/2... [blogspot.ca] - DIY
Re:Solution (Score:4, Interesting)
While the brain can remap, as someone mentioned earlier, it can take up to a year of effort on the patient (as well as the doctors) for the process to really begin. It is draining on the patient, severely draining. My wife lost the toes on her right foot recently, and she is beginning therapy soon to try and stop the phantom pain by using a mirror to re-wire her brain into thinking she has toes on that foot and to stop with the pain and 'oh crap toes missing' messages that are currently being sent.
She isn't expected to even begin to see results from this for 9-12 months while the brain re-wires itself.
Unless there is some possibility of quick recovery from this, I would have to go with some of the others and recommend the painful (painful for you; remember, funerals are for the living), but more humane, option of pulling the plug. This situation is exactly why my wife and I both have extremely detailed living wills.