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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 wanax ( 46819 ) on Friday May 23, 2014 @11:45AM (#47074657)

    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: []

    You might want to contact Frank Guenther at BU []. Who has worked on this for several years, and has started the Unlock Project [] particularly for people in your sister in law's situation.

    • And I must scream [].
    • by sconeu ( 64226 ) on Friday May 23, 2014 @12:08PM (#47074937) Homepage Journal

      My late wife had ALS. We used a Tobii [] 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.

      • by sconeu ( 64226 )

        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.

      • by mysidia ( 191772 )

        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.

      • by sconeu ( 64226 ) on Friday May 23, 2014 @01:35PM (#47076183) Homepage Journal

        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 [] a year and a half ago, or so. It was for this computer.

    • by Rei ( 128717 ) on Friday May 23, 2014 @12:16PM (#47075057) Homepage

      There's the EPOC controller... []

      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.

  • by mbeckman ( 645148 ) on Friday May 23, 2014 @11:45AM (#47074659)
    I'm not a medical expert, but work in computer forensics. I think it's wise to begin recording her facial movements immediately to establish a baseline of activity and determine when improvements or declines occur. This seems like something easily accomplished with today's off-the-shelf technology, such as GoPro style digital cameras.
  • Dasher (Score:3, Informative)

    by XPeter ( 1429763 ) on Friday May 23, 2014 @11:45AM (#47074661) Homepage

    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?

  • by ei4anb ( 625481 ) on Friday May 23, 2014 @11:47AM (#47074677)
    You probably know this already. For the moment you should concentrate on telling her that everyone is ok and she needs to rest. Talk to her, tell her not to try to respond and not to be frustrated. Don't ask questions as that will make her more frustrated. Keep her in the conversation without expecting her to answer.
    • Excellent advice.

    • by daniel23 ( 605413 ) on Friday May 23, 2014 @12:10PM (#47074961)

      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.

    • by Rich0 ( 548339 )

      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

  • I can't help but think that this device would come in useful: [] It seems that some software could used to map brain activity to letters if not common words (or just a pointer) to at least help her to be able to communicate with the "outside world"/
    • by Twylite ( 234238 )

      This. Wikipedia has a Comparison of consumer brain–computer interfaces [] 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 [] and this []. I'm sure there are plenty of others.

      Another approach is software like Dasher [], which turns gestures from various sources (including eye tracking) into text.

  • Stem cell therapy (Score:4, Insightful)

    by Jace Harker ( 814866 ) on Friday May 23, 2014 @11:52AM (#47074729) Homepage

    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 [] that might be a starting point for you.

    • Re:Stem cell therapy (Score:5, Informative)

      by umafuckit ( 2980809 ) on Friday May 23, 2014 @12:12PM (#47074999)
      I'm a neuroscientist. As far as I know, the science is nowhere near the stage that something like this would stand reasonable odds of working for stroke damage in the brain. It's pretty much a false hope right now.
      • Re:Stem cell therapy (Score:5, Informative)

        by theskipper ( 461997 ) on Friday May 23, 2014 @12:35PM (#47075367)

        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: []

        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.

  • Blink Board (Score:5, Informative)

    by Anonymous Coward on Friday May 23, 2014 @11:54AM (#47074755)

    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).

  • See [] - this article discusses using brain scans to communicate with patients originally thought to be "vegetative". [] is a more recent article on this topic.

  • Dasher? (Score:5, Informative)

    by 404 Clue Not Found ( 763556 ) * on Friday May 23, 2014 @11:56AM (#47074781)

    The program Dasher [] is made to be used by immobilized but conscious patients. It's basically like autocomplete on your cell phone, but instead of typing each letter, you look at it. See their videos, like this YouTube one [] or the rest on their website, for a demo.

    It can be used with an eye tracker, following her eye focus instead of eyelids. You might be able to adapt to a brain sensor headset [].

  • 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

    • 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.

  • by Anonymous Coward on Friday May 23, 2014 @12:04PM (#47074867)

    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.

  • by Just Brew It! ( 636086 ) on Friday May 23, 2014 @12:04PM (#47074869)

    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 looks at what regions of the brain are active (by looking at which the rate at which different regions consume oxygen) and has been used to communicate with patients that can not otherwise communicate. First the patient is told to imagine two different activities (one at a time) like walking through a house and playing tennis. The pattern of brain activation is different for each thing but consistent between trials. Then, you can ask questions like "imagine playing tennis if X or walking through the ho
  • With some rehabilitation she can likely regain mouth movement and then lip reading technologies could open the window dramatically.

    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
  • by avandesande ( 143899 ) on Friday May 23, 2014 @12:07PM (#47074923) Journal

    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.

  • I know it's too late now, but I would have looked into this: []

  • by fahrbot-bot ( 874524 ) on Friday May 23, 2014 @12:10PM (#47074973)

    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... []) 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.

  • by dex22 ( 239643 ) < minus berry> on Friday May 23, 2014 @12:11PM (#47074987) Homepage

    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.

  • Note, as mentioned in the link you provided, some people do partially or even fully recover. It's too soon to assume this is the way it will always be. Meanwhile, hopefully others can come up with good ideas for a way forward communication wise.
  • by RockClimbingFool ( 692426 ) on Friday May 23, 2014 @12:19PM (#47075095)

    ... you need to contact a lawyer. You need to support her and find ways to communicate as well, but finding a good lawyer is, sadly, almost as critical.

    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.

  • 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 [] 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 []

    brain-controlled Pinball []

    (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).

  • ERP (Score:4, Interesting)

    by markhahn ( 122033 ) on Friday May 23, 2014 @12:24PM (#47075161)

    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.

  • by computational super ( 740265 ) on Friday May 23, 2014 @12:29PM (#47075253)
    You might want to check out the book "The diving bell and the butterfly" - it was actually written by a locked-in syndrome patient (who dictated the whole thing by blinking out letters). He was even worse off, since he had only one good eye.
  • by tylikcat ( 1578365 ) on Friday May 23, 2014 @12:48PM (#47075539)

    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.

  • [] Sounds like there is some hope for recovery. Good luck, man! Love that baby!

Any sufficiently advanced technology is indistinguishable from a rigged demo.