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Communications Medicine

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?"
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Ask Slashdot: Communication With Locked-in Syndrome Patient?

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  • by Anonymous Coward on Friday May 23, 2014 @01:14PM (#47075869)

    Interestingly enough, on happiness/life-satisfaction questionnaires, average scores for locked in people are actually a little higher than scores for ordinary people.

  • by Sloppy ( 14984 ) on Friday May 23, 2014 @04:32PM (#47078343) Homepage Journal

    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

Civilization, as we know it, will end sometime this evening. See SYSNOTE tomorrow for more information.