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Ask Slashdot: Communication With Locked-in Syndrome Patient?
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?"
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.
yeah, that is really sad, sorry.
Morse code a la Johny Got His Gun by Dalton Trumbo / One by Metalica?
but there will be many people praying for you
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...
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.
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 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?
"The difference between genius and stupidity is that genius has it's limits" - Albert Einstein
I have no clue what help to offer, however, this does bring us to a good introduction into why healthcare costs are so high and how disease trajectory counseling and advance directives are are so important.
Unplug her, wait a bit and use an ouija board
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.
Sadly it's the most important question. Explain it to her. Then ask. Give her the dignity of a choice.
Does anyone have any ideas on how to communicate better with her?
The only other option, with current civilian tech, is an EEG cap. This examines sum activity of moving charges in the brain and it is possible to develop a sufficient level of control to generate recognisable patterns that can be used to form a limited vocabulary.
Is there technology that could help? Like brain-wave readers or something?
An EEG cap is just sensitive electrodes that are sampled by an ADC. Using pattern recognition software, variations on the input can be related to words and outputted via speech synthesis. There is some classified tech that uses radio waves that can provide direct access to the speech centers and decode them, but it would be out of your reach at present.
Does anyone have any ideas I haven't thought of regarding communication with her, or maybe even experience with it?
The EEG route is the only viable option at present and its quite cheap.
As a further suggestion, attempting to stimulate nerves can sometimes allow the brain to remap them, I don't know how successful it would be, but I suppose anything is worth a shot.
I can't help but think that this device would come in useful: http://www.emotiv.com/apps/epo... 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"/
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.
http://www.youtube.com/watch?v...
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).
Sounds like whoever picked the baby's life over hers is a selfish fuck. No they have the baby but not their daughter wife etc. they could of had more kids but they won't get her back.
Selfish pricks.
- Devices exist (brain-wave readers and eye tracking cameras afaik).
- They will probably ease communication.
- They aren't cheap.
- Insurance might not be keen on paying.
- They require expert assistance to set up and use.
- Time-frames involved in researching a good solution, applying for financial aid, ordering, setting up / traveling to appointments with specialists, etc. are more like 'months' than 'days'..
The "mindflex" games come with a cheap EEG headset that controls the game (the one I've seen controls fans that levitate a small ball through an obstacle course). That's an $80 child's toy. There's bound to be a medical equivalent that can at least let her answer yes/no questions with (relative) ease--ask her doctor, it's presumably his/her job to know.
See http://www.nature.com/news/201... - this article discusses using brain scans to communicate with patients originally thought to be "vegetative". http://www.nytimes.com/2014/04... is a more recent article on this topic.
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Well, you could have asked 4chan I guess, there the first response wouldn't have been to pull the plug, it would have been to fuck her then pull the plug.
On a serious note, there has been an enormous amount of research on Brain-Computer Interfaces, and as a patient who apparently has full mental capability but damage at the spine level, she'd probably be able to use these. She might even be able to fly.
So sorry to hear about this! I hope she recovers from it. I did a quick google search on this and found a few companies who are using eye tracking to communicate, generally using duration of eye gaze (and not blinking) to activate. Here are a few: http://www.tobii.com/en/assist... http://www.eyegaze.com/eye-tra... There may be others as well.
And probably the Simpson's too.
There are real-time brain scans that can show what areas of the brain are active with increased blood flow.
Also, if she can focus her eyes, there are some technologies that can sense where she's focusing on a computer screen and allow her to spell out words and communicate in that manner.
If she has partial control of her lips, does she have any control of her tongue as well? There are several existent methods to control/communicate by using sensors that are tongue driven.
Don't give up hope. The brain is a remarkably plastic and dynamic organ with an ability to heal itself that has only recently been recognized. Don't listen to these guys talking about pulling the plug. There is real hope that one day she may still be able to hold her child.
Stay strong!
Try facetime. All the locked in apple sheeple have it. And while talking to them on face time, tell them to throw away their crapple products.
Not to sound cold, but this type of situation a good example for why you should make a living will.
Does this poor lady want to go on tied to machines or does she want to be unplugged? The choice should be hers, but without knowing her wishes, that makes it a no-win situation.
Trolling is a art,
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 information about them. Your sister-in-law is in a terrible situation, but there's never been a better time for hope.
hence the question about communicating with her
More music, fewer hits
I wouldn't take AC here's comment too seriously. I now regret not posting as soon as possible. AC, you're a jackass. The question was a matter of communication.
There is no XUL, only WebExtensions...
Nice. You start-out by trying to sound like you give a damn then you end with a fucking advertisement. You Republicans are disgusting. Everything with you people is about money. Go away troll.
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.
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 house if not X" The results have been widely replicated. It has been widely used in MCS (minimally conscious state) but no reason it should not work in locked in patients. You can google it and find lots of article. Here are a couple. http://www.medscape.com/viewar... http://www.safar.pitt.edu/arch...
The crowd on Slashdot is a group of people who have in-depth knowledge of a wide range of topics.
Please... don't.. no...
I'm sorry and I'm not doing this to be funny or cute at all but the Slashdot group really isn't a good source of information about any of this. Out of the handful of people here who may have any experience with this in any way none of them are like to have ever encountered this more than once. There are professionals who specialize in this and they do it for a reason. Thinking that someone is going to come up with some Raspberry Pi-Arduino-biofeedback solution ala Stephen Hawkins is just poor judgement and that's the best you're going to get here.
There is just too many factions of people who are looking to push an agenda of some kind to come up with a viable solution that the medical experts don't already know about. You're going to end up with trolls, fanboys and people who have no idea what is and is not possible offering all levels of advice except for the kind of advice that you really need from someone who deals with people in situations such as this for a living.
I'm not saying western medicine is perfect, I'm just saying it's better than what most people make it out to be and that when it comes to people in extreme circumstances you probably won't find anything better. This isn't like asking for diet or exercise advice on a WebMD, this is a life and death situation and only someone who knows the patient is qualified to speak on the subject of treatment.
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 have better ideas about that.
But eye tracking is definitely something that can be done and relatively cheaply. Eye positions. N, S, E, W, NE, NW, SE, SW. That's 8 positions. They can be done with left, right, or both eyes open. That's 24 unique combinations. Combine it with blinks and you can expand that dramatically.
LET HER DIE. She deserves it. What kind of human beings are you? Dont you have respect? Just let her go.
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.
love is just extroverted narcissism
I know it's too late now, but I would have looked into this:
http://www.ted.com/talks/yoav_...
Try giving Ambien. Is it typically used as a sleeping pill but has been found to help some patients who are similarly locked in communicate more effectively for at least a few hours per day. Not guarenteed, but it has turned out to be a miracle drug in a small percentage of cases.
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.
It must have been something you assimilated. . . .
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.
Have you heard about Dr. Norman Doidge? He is a leading researcher in brain neuroplasticity and wrote a book about it titled The Brain That Changes Itself: Stories of Personal Triumph from the Frontiers of Brain Science. There you will find many cases of surprising recovery where traditional approaches didn't work. I'm not a doctor and I don't have a personal account of how this approach performs, but I thought I would do no harm if I told you about this. I hope all goes well.
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.
I want a list of atrocities done in your name - Recoil
Right, because only a Republican would refer to a facial tissue as a Kleenex, right? The political douche here is you. The GP's comment had nothing to do with ads or money, that's entirely you projecting your own twisted, vitriolic world view into the situation, coward.
Don't disappoint your bird dog. Go to the range.
I have some limited experience working with the low end versions, and I've done extensive reading about the technology for my dissertation work. (My dissertation is not about BCIs-- I had considered using them once, though, so I had to educate myself.)
The first and last word on the subject is this: Do not try to cobble together a BCI on your own, and do not bother buying a commercial one and expecting great miracles out them. Instead, broach the topic with your doctor, who will help you find a specialist, who will in turn advise you properly on how to proceed.
Some appropriate middle words on the subject are these:
1) When I say, "don't bother with a commercial one," that's not because you'll do any physical harm. You won't. But the commercial devices simply aren't that great. (Yet.) But you may end up frustrating the hell out of everyone-- you, your family, your sister-in-law, the medical staff and caregivers. It might end up being counter-productive.
2) There are several kinds of BCI devices, but the two you are probably thinking of (and possibly conflating) are electroencephalogram based (EEG) and electrocorticogram based (ECoG). They both "work" but they are different.
EEGs are the ones you can buy, either consumer or research grade. They are non-invasive, although to really get good results you need to apply contact gel. Research and medical grade ones have dozens, sometimes hundreds of electrodes, and they require very precise placement on the scalp. You can can't just put one on like a baseball cap. They are also somewhat difficult to use, and some people are unable to use them. (There are several factors, mostly anatomical in nature. It's still a research topic.)
ECoGs are the ones where they do very literal brain surgery and implant electrodes onto the surface of the cortex in order to better extract the signals for processing. THIS IS OBVIOUSLY VERY RISKY AND HIGHLY INVASIVE and is why you need to turn to a medical-research professional, not Slashdot.
Unfortunately, ECoG devices, for obvious reasons, give better results.
3) ECoG devices don't actually give the best results. The best results, however, are completely impractical and require MRI devices or multiple techniques. So if you go reading some of the literature yourself, be careful to pay attention to what devices are being used. MRIs are big bulky room sized machines that cost millions of dollars. ECoG devices require risky brain surgery. EEG devices are non-invasive and have been shown to work, but the results are less impressive.
I hope things go well for you and your family.
But PLEASE if you investigate this route, make sure you're working with a doctor-- a doctor who specializes in this.
Dr. Miguel Nicolelis at Duke focuses on HMI. Check his lab at http://www.nicolelislab.net/. Someone there should be able to help or point you in the right direction.
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.
My thoughts exactly. Dasher is a really good product, easy to use.
If something is so important that you feel the need to post it on the internet... It probably isn't that important.
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.
and you start out by bringing politics into a thread that has nothing to do with politics, you trolls are disgusting
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).
A few other comments hit on this, but I wanted to more succinctly.
This trauma just happened. Do not underestimate the ability of the brain to re-route around damage. It takes time and physical therapy. She may unfortunately remain a quadriplegic, but facial/eye control could improve significantly over the coming weeks.
I'm really happy to hear that the baby is fine. I bet that gives her hope and determination to continue the fight. If she can survive and stabilize then in the future she may be a candidate for brain-machine interfaces. I have no doubt that within roughly a decade quadriplegics will once again become self-sufficient.
Good luck. Stay Strong.
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 usual "This is not medical advice" disclaimer applies to the below.
Yes, there are methods of communication involving computers and gaze recognition. (For example: http://www.tobii.com/en/assist... or http://www.youtube.com/watch?v... ). I read in ye olde days there were analog 'gaze boards', and maybe your sister-in-law can develop codes (eyes left yes, lip up no...) But you also need to have conversations with her physicians - maybe they want her working / tiring by blinking for a therapeutic or rehabilitation reason... And the care team for your sister-in-law should be better in touch with what's out there as resources for her and be able to discuss that with you, or you should look into changing that team. (Moderated by knowing the care team will want to get some data over time to determine the best course of action to take - they may need to wait long enough to get data before they'll make a recommendation.)
In any event, deep sympathy for you, your wife, and family!
in germany for example there are rehab centers like http://www.friedehorst.de/nrz/english_welcome.php
i sure there are similar in other countries, but if you've got enough resources contacting them wont make the condition worse.
i hope that you will find proper help for her and that her condition can become better in the long run.
If I was in your situation I would want to make sure I vetted all possible solutions before settling on euthanasia. Also with a child being involved that complicates things even more. I hope you're able to find an alternative, or some semblance of peace for her, and your family.
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.
Proud neuron in the Slashdot hivemind since 2002.
https://en.wikipedia.org/wiki/Eye_tracking
I do not know how to answer your question and will not try. I replied only to wish you and your family my deepest sympathies.
I have no advice. But I just want to offer you a: *hug.*
Cast a wide net, and somewhere in the billion people in the world "maybe" there is something that can help.
Just last week I saw this on TV...
http://sixtyminutes.ninemsn.co...
which references this...
http://www.strokebreakthrough....
This is pertinent for me since a few months ago my Aunt had a stroke and is now suffering speech and motor difficulties.
Dude - it's a troll. They've been blanketing pretty much every article with "Dur dur fuck Republicans" nonsense.
DNFTT.
An enigma, wrapped in a riddle, shrouded in bacon and cheese
You don't need technology.
You need someone who has studied communication, specifically AAC, and knows what is possible. You don't need someone inventing things without knowing what is out there (I.E. if someone can't explain what Minspeak is, and who it does and doesn't make sense for, move on).
This person will know about different input technology, input systems, language systems, etc. A computer guy doesn't. Seriously. It requires assessment, not a few paragraph description of the person.
This is way too important to get opinions on Slashdot about. You need to find an expert. The expert probably will be an SLP, but an SLP with significant experience with AAC (most don't have this).
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If you were my client, I would also recommend you to seek for psychological assistance for yourself. Things will be difficult and you'll face burnout.
Best wishes for you and your family
I am a speech therapist and have worked with individuals in similar situations. There are communication systems (high-tech and not) that can be controlled using eye gaze, small movements, and even puffs of air. Not having seen your sister-in-law, I can't say what will work for her, but I would bet that you can find a solution. See if you can get one of the hospital's speech therapists to visit your sister-in-law, and ask about augmentative and alternative communication (AAC). Not every speech therapist is competent in this area, though, so you may have to look elsewhere. For example, there may be a university near you with a communication sciences and disorders department with someone who specializes in AAC. Penn State's AAC program is an excellent resource (http://aac.psu.edu/), and if you e-mail one of their contacts, someone can surely point you in the right direction.
Also, based on my experiences with brain trauma, your sister-in-law may regain some function. Recovery will take time and will likely never be complete, but she can likely still lead a fulfilling life.
I have no experience in this field but instead of asking her to blink her eyes, I'd ask her to move something that's easiest for her, in response to questions. Observe carefully. Maybe it's easier for her to wiggle her toe.
Here's an interesting article: http://www.bbc.com/news/health-20268044
Here are some European experts: http://www.coma.ulg.ac.be/
Good luck, and don't disconnect just yet...
And please post a follow up in a while.
This is not the sig you're looking for.
First, my deepest sympathies to everyone who loves her. Second, I hope some of you asshats NEVER deal with this but that you grow up! Third, give her time it's not been a week since she went through a major trauma. Make sure she gets to have her baby near her for both of them. She may not be able to hold the baby but it can lay on her or beside her. Let her rest. Previous posters said keep the conversation positive and easy to answer questions. Make sure her body is getting lots of massage and movement to prevent atrophy and for stimulation. I found this also http://www.northeastern.edu/ne... this is a PDF on another method http://www.neurology.org/conte... I think the first link would be most affordable but all info is worthy of investigation. I think time is going to be most beneficial and positive thinking. I hope for the best for all of your family.
*Think globally~Dream universally*
Prayer: for people who like to pretend they are helping without actually helping in any way whatsoever.
It's called a brain-machine interface. It essentially a specialized ECG.
An electronics prof in my uni is working with them to control helper robots.
However, you have to train with it to generate the proper signals to get the robot to do what you want it to do. It should be possible to get one to write things for you, but you'd have to find someone to write software for it, and the patient would have to train with it for a while before it could do anything useful for her.
The doctors should consider cultivating some of her own stem cells and possibly injecting them into the region of her brain that has been damaged. There have been some promising results on experiments, but it would be very risky. All other options should be explored first before considering this. As the operation removed a benign tumor that had ruptured, there is the possibility that if any of the tumor tissue remains, it could grow back from the stem cells.
But if it comes to that as a final option, it should be considered.
The whole point of laws like this, is to cause suffering. The patient should have a high chance of suffering, and all the people who love the patient should have to suffer by knowing of their suffering, plus suffer from the dilemma, and also suffer when punished, if they choose to accept that suffering to relieve the patient of theirs.
But that doesn't mean anyone (except the legislators and the people who vote for them) "suck as human beings" for being successfully pressured by the law. The law resulted from centuries of feedback from human nature. It is better and stronger than any person.
If the average person could fairly easily unplug the machine, and thereby only suffer the sadistic punishment from law (without the prior dilemma or fear of the punishment), then the law would be considered a failure and would need to be tweaked to make it more threatening. They'd increase the sentence. Maybe make it so that the punishment would be some kind of drug-induced paralysis so that the compassionate euthanizer then takes on the suffering of being "locked in" but not allowed to die, or whatever. Or possibly collective punishment would be on the table, where whole families would be punished.
But we don't need to go that far; most people opt to let the patient suffer, instead of inviting punishment from the government, and they get to suffer the lesser amount, merely knowing their loved one is suffering too. Most!! (Kevorkian was an outlier; that's why you know his name!) So by fitting the profile, he doesn't "suck" as a human being; he is average and typical, and more importantly, expected and anticipated by our laws.
Don't like it? Give me a break. If people didn't want this evil, they'd vote against it. Nobody does. It is a desired evil, intended to maximize suffering, because we as a society, value it.
Have you heard of the counter-intuitive usage of Ambien? I'll leave you to your own conclusions. Simply search "locked in ambien", and good luck.
Can she move her tongue? If so, get a little box with 2-3 buttons she can bit on and poke to answer yes, no, etc.
If she can't move more that was detailed in the post you can try an EEG headset and classifying software. Setting up a basic classifying program to let her think something to answer yes and no would take less than a day. She will need to test and train for a few days to be reasonably accurate.
I've done this using cheap, mass market eeg headsets and foss software, it's entirely doable.
Hope that helps, I'm sorry about that your family is dealing with this.
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.
Hi - my dad passed away of stage 4 multiforme gioblastoma a few months back. I am really sorry to hear about your situation. It brought back alot of things/emotions rushing back. We had to make a decision to let go after we knew he was never going to come back to normal. Life is more than the sum of its little parts, and all I can say is I am really really sorry to hear about that. I don't believe in god - but I will her in heart. Take care of yourself - take care of your family and try to make it through as un scarred as you can ....
Don't forget pull the plug, then fuck her.
Be careful to separate the serious scientists from the con artists. But clinically significant results appear possible. Is it risky? Sure, but it beats unplugging the machines.
Especially this from the Department of Neurosurgery at Stanford University School of Medicine:
https://www.youtube.com/watch?v=E4WXwhTp7Ow
and this from Dr. Rappard's stroke study in California:
https://www.youtube.com/watch?v=btEGHYtm3oI
Of course, it would be a good idea to try brain-computer interfaces at the same time, of the sort popularized in the media over the last several year. Worst case, if she stops responding, try functional MRI, which allows some patients to communicate yes/no answers by imagining certain physical activities which create distinct brain activity patterns, with no requirement for actual movement or speech.
We have a friend suffering from ALS. She is one of the most creative and vital people I've ever met. She knows that her time is limited, but wants to be able to stay active for as long as possible and avoid being locked in. She's currently participating in research (I'm almost certain out of Stanford) where she's had electrodes implanted in the brain and can control a computer mouse by thinking of moving her hand and clenching her fist.
I did a quick search and found this research out of Stanford. Probably the people she's working with, but I'm not sure.
http://alsassistivetechnology.blogspot.com/2011/11/stanford-joins-braingate-team.html
I wish your sister-in-law and your family the best.
I watched "The Diving Bell and the Butterfly" and I was wondering the whole time why they didn't use Morse Code. Maybe there's a factor I haven't recognized but it seems like it would be orders of magnitude faster than the laborious process of moving through the entire alphabet for each character. Morse Code was developed specifically to provide maximum bandwidth via a single binary channel, like a telegraph buzzing on and off or an eye blinking.
The best strategy for communication will vary by individual. Something with an eye tracker should be better than reliance on blinking. Here's a very recent, more sophisticated, communication technique from the literature:
http://www.ncbi.nlm.nih.gov/pubmed/24838215
Stephen Laureys is an author on the paper, and he's really been pushing the boundaries of communication with locked-in patients. He's one of the best scientists in the world. Reading his work could get you current on the instruments and methodology that make this communication possible and efficient.
Read Hellen Keller's book. She wasn't a shut in, but you could gain some ideas here.
First off, be sure to read that post higher up about the guy who had a similar condition due to a ski accident - heed his advice - get a brain stem specialist contacted ASAP.
Down the road, you may want to consider looking at some software that was put together and found at suecenter.org. The fella who developed it is very enthusiastic about it and willing to help out. It doesn't sound like she has enough motor movement yet for the tracker to work, but conceivably you could attach the tracker to her lip to let her control the mouse in the application.
Prayers to ya.
----- obSig
Well I'm a little disappointed in the narrow-minded responses of "just pull the plug". Regardless, I understand its just a TV show, House did an episode with a patient in locked in syndrome. Episode 5x19 in that they used a brain computer interface, that looks like it took a lot of effort for little return. If it was me I would start asking the doctors to do deep brain stimulation or ECT, in hopes that electricity can help open up some of the damaged passageways. There is a good tech talk about how ECT is used here. Realistically her brain is probably going to have to learn to re-wire and understand how it needs to communicate with the rest of the body again.
Best of luck!
Good leaders run toward problems, bad leaders hide from them.
I am 49 years old and believe in Santa Claus, the Tooth Fairy and the Easter Bunny.
For some crazy reason people insist on making fun of me and keep trying to institutionalize me.
Santa exists, I tell you! I KNOW this for a fact!!!
And no one has been able to prove his non-existence; therefore, he must exist.
"Communicating with the Locked-In" by Yale Neuroscientist and scientific skeptic, Steven Novella: http://www.sciencebasedmedicin...
It discusses the science (imaging, brain-machine interfaces) vs pseudoscience (facilitated communication) relating to communicating with the locked in.
http://mosaicscience.com/story/mind-readers
First, I'm sorry to hear about the misfortune that struck your sister-in-law. I know you and your family must be going through immense stress right now, and it's extremely distressing to feel helpless - in such times, one has a strong urge to try to somehow improve the situation, even if there is realistically no way. My advice is: don't panic, get some rest yourself, give it some time. If you're positively sure she's able to willfully move her lips, no matter how much effort it takes her, it does not qualify as locked-in syndrome , far from it. She's recovering from a stroke, so it is to be expected every action from her part will be extremely exhausting. This is very likely to get better, and as long as there is a neural connection to her eylids and facial muscles, her brains will learn to make the most of it, especially since she's only 28. Also, if I understand the situation correctly, it cannot be ruled out that some other functions may recover as well. Before deciding upon a course of action, she needs rest, and you just have to wait and see which motoric functions recover. Next step is therapy to teach her brains to make the most out of these functions, which will take months. Assuming everything is reasonably stable and the cancer itself is under control, the worst-case scenario she's looking at is a life like Stephen Hawking for the coming several years. She'll enjoy seeing her son grow up, and have the prospect of (robotics and neuron-machine interface) technologies around the corner that hold the promise to dramatically improve her quality of life.
He is asking for technical means to communicate. Your comment is totally out of scope of requested help/advice and thus is highly inappropriate (amplified by seriousness of the situation).
http://www.gtec.at/Products/Co...
This product was on display at CeBIT and I tried it out. The calibration takes about 45 minutes, but after that period, each letter took about 10 seconds and I was rapidly improving. In principle, I would also assume that they could extend the technology to words rather than letters and combine it with some kind of predictive text input.
I really hope you find a solution that works and I think the community at large would appreciate if you could document the experience and the successes I hope you have in such a situation.
I would also ask if you could make this some kind of a collaborative project over the interwebs. There must be more people in this situation and countless people like myself who would be motivated to work on this challenge...
Let's get to it!
Atheist: Buddhist in a Prius
“Let nothing disturb you,
Let nothing frighten you,
All things are passing away:
God never changes.
Patience obtains all things.
Whoever has God lacks nothing;
God alone suffices.”
Teresa of Ávila
Make sure the kid gets her milk, if there's a way. I know nothing but certainly she'll want him healthy in the future. Good luck!
The question was about better ways to communicate with the patient, not "should we let her live or die?" I understand it to say that the decision to live has already been answered. She just needs a better way to communicate.
I know she has trouble with her eyes but you can make an eye gaze board yourself in a few minutes and she can be composing real sentences right away.
Get her a cannabis oil treatment, then you can bring her home from the hospital and comunicate with her. www.phoenixtears.ca
Are your assertions based on a careful controlled study or are they an article of faith?
Every oppressive, paternalistic, misogynist, and backward shit hole in the World has a theocratic government.
Is that because of religion or uneducated ignorant people are religious?
Once the world is free of people who can't stand to have others believe differently from them, it will be a better place.
Agreed. That's why it is of utmost importance to stomp religious ignorance out. (after all, it IS Iron Age superstition invented by ignorant and primitive people)
Otherwise we will have these endless battles of religious people forcing their beliefs on us via legislation (teaching creationism, institutionalizing bigotry and racism , or legislating "family values" on all of us ). And of course, there are the folks who insist on forcing their beliefs at the point of a gun - see Middle East and South East Asia.
Your sentiment is wonderful if we didn't live in a highly superstitious and scientifically illiterate World.
I mean really, this IS the 21st century and we have people insisting on worshiping an Iron Age deity?
Good grief!
It is tragic what happened to your sister-in-law and our hearts go out to all of you. There road ahead may be long and difficult, but there is hope for improving the situation. Brain-machine interfaces have been successfully used to help paralyzed people communicate and interact with the outside world. http://www.popsci.com/technolo... The technology has not been perfected. But there are solutions that work even today and steady progress is being made.
You also need an acronym dictionary, specifically one that includes the terms AAC and SLP.
http://www.cnn.com/2014/01/18/health/fish-oil-recovery/
This may be a truly experimental therapy or just a one-off anecdote. Either way, it looks like it worked for someone and it may help you.
I am a Neurologist and Neuroscience researcher. I work with fMRI (functional MRI), EEG and MEG( Magnetoencephalography) in my research and clinical practice. And I can tell you from experience, these methods are not practical for what you want to do which is daily continuous communication with your loved one. Your best solutions will be custom to your loved one, and most likely will be an eye tracker. I use these in my research with children and they are quite reliable.
Look at Tobii (http://www.tobii.com/en/assistive-technology/global/disabilities/) for an idea of possible products. As part of her recovery, her MD's will have her evaluated by a speech/communication specialist and they will talk to you about many different solutions, including blink boards and eye trackers. But solutions vary, I have one patient that learned Morse code, because it was free and faster than a blink board.
In any case,seek real expert opinions from people who's credentials you can vet, not people on the internet. This is really the only way to see which solution is best for you.
And that might necessitate your chilling her out a bit. I would say that would be first. Then, you might want to try to see if she feels up to establish some basic communication methods. What someone said about a board with letters that are pointed to sounds good. First think I thought of was blinking for morse code. She needs to be able to tell you anything she might need to. Then some rest and monitoring are probably in order. What someone else said about establishing a baseline for responsiveness (e.g. via digital camera/software) might also be useful.
Hopefully, you've got good medical support, but always rely on your own judgement first and foremost. Stay chill and hang in!
Bukowski said it. I believe it. That settles it.
I note your observation that blinking her eyes appears to be tiring to her. She probably needs a huge dose of peace and quiet right now. I wonder if it hurts her to hear and process noise? I wonder if light is annoying to her? I remember when I had encephalitis, any kind of light was painful to me. Loud noises, or prolonged noise that I had to concentrate on was painful to me.
1) During the evening and perhaps part of the day...every hour play a single song for her, something quiet, soft and uplifting. Some new songs and some songs from her collection. Low volume! Conversation volume level. Maybe do this for three songs then take three hours off.
2) most of the hour during a given day should probably be quiet. as quiet as possible, reasonable background conversations are ok and helpful. At night it should be silent.
3) of course, talk to her... but only for 5 or 10 minutes per hour at most. steer clear of controversial subjects. Tell her about times you looked at her and thought she was sexy or smart. Tell her about stuff you plan to do with her, stuff you want to buy, changes you want to make to the house, things she cooked that were tasty, times you ate out where you both had something tasty.
4) don't over stimulate, she might have some internal work to do that requires her attention.
My suggestions are based on my personal experience with encephalitis, her condition may (probably) be a different experience for her. As she is better able to respond you can ramp up the stimuli. Good luck!
I don't think this exists, but I could see it working:
1. Take existing eye-tracking technologies. (I'm not familiar with any but I know they exist)
2. Put up a virtual keyboard in front of your sister-in-law.
3. Track what letters her eyes trace over.
4. Use statistical analysis to guess which words they are trying to spell (like Swipe/Android keyboard).
This should allow her to spell words fairly quickly, although swipe keyboards can be frustrating at times.
Holy shit, long enough summary?
I don't know much about this, but thought it might be a good place to start: http://emotiv.com/
Nothing against the slashdot community, but seriously, there are professionals that deal with this as their job. The neurologist and a neuro-rehab focused speech therapist are going to be much better qualified to discuss assistive communication devices that may help.
I just sat in on a lecture last week by the inventor of this low-cost communications device for people suffering from similar conditions. It looks like it might be what you're looking for:
On my android phone, I can type words by swiping between letters, rather than simply poking at them with my fingers. I'm amazed how well this tech works and how fast I can write with it.
I know that eye trackers exist (and that one can select letters by hovering over them) but does eye tracking + swipe exist? If it doesn't, it would be straightforward to prototype it easily (originally you had to buy it, but now it seems to be part of the main OS. http://www.swype.com/
...actually, after a bit of googling it looks like others have thought of this: http://sciencenordic.com/texti...
Other human computer interaction options would be the various brain wave headsets which are now appearing (e.g. from google I see http://neurosky.com/ http://interaxon.ca/ etc). They tend to be less accurate, but are probably useful for things like controlling the environment (lights on and off) etc. It wouldn't be difficult to interface them with some basic home automation hardware.
I would think that finding a mix off input devices would be ideal in terms of preventing fatigue.
Once a bit of time has passed, you might consider spending some time looking through the faculty pages at your local University's CS Department. Get in contact with them. There is a lot of work (and funds) going on into HCI right now. This seems like the type of project that would get a lot of support from graduate students and faculty.
Please come back to us with a follow-up post. Don't forget to include a fundraising link for equipment costs. I would certainly contribute.
Ambien has an ingredient that temporarily wakes up neurons that have been told to shut down in stroke victims. I'm not joking. Here's a link but there's a lot more from reputable sources available on google.
http://www.dailymail.co.uk/news/article-2079018/Sam-Goddard-Stroke-sufferer-23-woken-SLEEPING-PILL.html
Might be worth a try. My prayers are with you all.
if there is no long term recovery.
Who logs in to gdm? Not I, said the duck.
How fortunate that religion was banned by progressive utopias like the USSR and the PRC.
No, you are wrong. Religion was not banned.
The #1 religion in China is Christianity and IS practiced freely. Who'd thunk it?
And the USSR? Religion was not banned either. You got suckered by US propaganda - religious propaganda I might add. See, back in the 50's or so, the powers that be wanted to paint the Communists - at least the Soviets - as these Godless anti-American anti-Capitalists. And yet the Russian Orthodox church survived.
How about that.
It's a shame that the mods are so ignorant. And I constantly ask myself, "Why do I bother with Slashdot? Aside from the occasional insightful post about technology, Slashdotters are just as, if not more ignorant than the general populace."
But ...it's part of my growth. See, I am also arrogant - just like everyone here on Slashdot. We think we are SO special because we understand things that the general population doesn't.
And yet, I keep coming back .... I AM a loser.
It's too late for that now, but make sure that she's in a hospital that can deal with any of the complications that might come up.
And the last, controversial part, usage of cannabinoids with extreme effort and concentration to encourage nerve regrowth and connection (endogenous cannabinoids play this role). I started losing the ability to use some of my leg muscles when I was about 5, about 13 my right leg was basically a frozen cane (I also had a tyranasaurus right arm, basically my whole right side was fucked). 20 years later after getting over my fear of drugs (friends dying) I started physio/yoga with high cbd/low thc. 7 years later I can fully support my weight on my right leg, I can do squats, hell, I can even do a double spin on it. Of course, the first 4 years were pretty much hell, and the pain after regaining movement of an area can be excruciating, but i think that has more to do with how long something has been dormant.
Do yourself a favor and don't dismiss anything out of hand no matter how crazy it sounds. However, be diligent and do your homework. That goes for anything the professionals suggest as well.
There's always hope, there's so much we still do not understand about how the body works or reality itself.
Don't complain about syntax, grammar, or spelling. There is no.hell like input on android.
Look into the type of software and hardware that Stephen Hawkings uses. It will take some time, but she could get to the point to where she could at least express her wishes.
Sounds strange that everyone is talking about tech to solve the problem, and nothing about
diet to help improve the problem. Even though I'll never eat them again, chicken eggs are
said to be good for this. I'm sure there are other foods that are good for this too. Time to
clean out the body of any poisons and introduce foods that help promote healing.
Check out the Eagle Eyes project at Boston College. They have over 10 years experience working with people with severe communication impairments.
http://www.bc.edu/schools/csom...
The system is available through Opportunity Foundation of America:
http://opportunityfoundationof...
If the person can move their head, they may be able to use the Camera Mouse: http://www.cameramouse.org/ (Free download)
(*Or just do this: (Tell her this>:)
1. Just count breaths from 1 to 10. Repeat.
2. When a thought or emotion takes one away (as it will, even for practiced meditators), gently bring one's attention back to the breath.
3. When that gets boring, watch the mind. Try to watch the thoughts and emotions arise. When #2 happens, gently bring your attention/awareness back to the mind.
4. Eventually, one will wonder who is having the thought. That is a good time to try to find out who the "I" is. Focus the attention on the "I" feeling. If more curious, or more info wanted, google meditation and find the type of practice or teacher that appeals to you. )
Or show her the movie (on a tablet maybe) the movie "Spirtual Revolution". Pretty cool.
http://www.cnn.com/video/data/... Sounds like there is some hope for recovery. Good luck, man! Love that baby!
ASCII tastes bad dude.
Binary it is then.
I don't have an answer to your technical question but know that my prayers are with you and your family.
Knowledge is how to play a game, intelligence is how to win, wisdom is knowing what game to play.
1) Check out how Stephen Hawking communicates.
2) A Wikipedia article on Locked-in Syndrome has a section titled "notable cases. This section lists several people who have recovered from lock-in, or who communicate using technology. For example, "Kate Allatt is a mother-of-three from Sheffield, South Yorkshire who has successfully recovered from locked-in syndrome. Now, she runs Fighting Strokes and devotes her life to assisting those who have locked-in syndrome." See those people can offer some suggestions.
3) Ask her doctor, and people who have or had lock-in, what 5 or 10 things your sister-in-law would most likely want to tell you - for example, "Pain" or "Hungry". Write those words on papers, and write them several inches apart, so that when she looks at the word that she wants to say, you can tell which word she's looking at. Also write positive things like "I love you" and "Thank you". Also "Other", for messages that are not on the list.
4) Make sure that she is being monitored every second. Then tell her that she's being continuously monitored. Tell her that if she has a problem, the doctors will know about it, and they'll come running to help her. If I were locked in, I'd be worried about having a problem like choking on my own saliva, and not being able to do anything about it or call for help, because I was paralyzed. I would be very relieved to hear that because of the continuous monitoring, doctors would know of any problem, and would come running, without me being able to call for help. So tell her that.
but making a dictionary of 2^x words might be a good idea and then use a binary way to traverse it (eg. word in left part/right part -> remove half -> repeat until 1 word is left). Actually there might be "better" way of doing this (eg. huffman-encoding so you get less decisions for often used words), but I think that will get a little complicated for selection.
Also maybe there is a possibility to get input data somewhere else. I know of research where people did left/right decisions iirc by thinking of a color and the brainwaves were picked up.
Don't have any personal experience with it.
Wanted to contact you by email, but can't find any listed. Please contact Dr Jaimie Henderson of Stanford with the BrainGate II trial. He may be able to help.
http://braingate2.org/
DARPA has a small implantable chip that will do what you need it to do, assuming the patient is truly fully awake. They have monkeys working a robotic arm with brain signals alone.
With rare exception continuing to keep your sister in law alive is going to stall the grieving process at an awful place.
The guilt and financial stress will just build and fester.
*IF* your sister in law was incredibly brilliant in a way that can be expressed as the written word (Which includes telling compelling stories) and already knows Morse code... you're going to have a short path to making her feel a part of things.
It's insanely expensive and stressful to care for someone with brain injury just to the point that the individual is declared legally incompetent... but can still physically show comfort and affection (and anger). With current technology we can let someone that is locked in fester and rot for a very long time.
I don't have much to contribute by way of technical solutions, but wanted to share that I had an uncle in his 40's who had a similar situation. Multiple storkes in the base of his brain. He was though brain dead and first until one of his brothers proved he was locked in to the doctors. After a year or so of theropy he is now 'only' left side paralized, but he can talk, eat, write on facebook , laugh and spend time with his family, go places in his wheel chair etc. My understanding is that these things are highly unpredictable, but don't give up on hoping it will get better. The road to recovers will probably need a lot of work and someone to champion the patients cause though because most medical establishments don't want to put in the effort/ time / money into actually helping people with this kind of condition get better. ( not to metion it is fairly rare so expertise tend to be limited.)
Another thing the OP might be interested in is P300 speller. It scans across a grid of letters and watches for the P300 response to fire off when your letter is highlighted.
We actually worked with an emotiv headset in a class on brain interfaces I took last semester. It's a cool concept, but it's no more than an expensive toy sold by a bunch of flashy marketeers.
The build quality on the headset is terrible. I bought the consumer edition about a year ago because it looked interesting. When I first got it, the front right sensor (I believe that's P2 in the 10 20 system) was broken right out of the box and it took 2 months from me putting in a ticket to getting the repaired headset back. When I finally got it back, the detection was disappointing compared to what they showed in their marketing material. Then when I took it out again for this class, after a few weeks the plastic bits on the removable part of the electrode that lock it to the sensor arm all started to break.
The one the school bought for the class was a research edition. Within a week of use, the front right sensor started to die the same as mine, and it was completely dead after 2 weeks. Then the plastic locking bits on the removable part of the electrode also started to go. The icing on the cake was when someone was putting it on their head as they and everyone else had normally been doing for half the semester and it literally snapped in two.
Physical complaints aside, the company is shady as hell. In some of their material, they show a video of a paraplegic guy wearing the headset and moving a mouse pointer around on his screen and typeing. It would have been great if they mentioned that he was just tilting his head slightly to use the gyro embedded in the back of the headset, and then blinking his eyes to click. Instead they fell just shy of false advertising by leaving the viewer with the implication that the guy was moving the mouse around with his brain.
Another hugely annoying thing is that there's literally no difference between the research edition and the consumer edition. There was actually some worry of mixing up my consumer one with the schools research one. The only thing that makes the research edition the research edition is the fact that it has firmware which doesn't scramble the raw data so that they can slap a $750 price tag on it rather than the 300 the consumer edition costs. The software licensing is also obnoxious in that they have so many different versions of things, and their documentation of the APIs is quite bad.
@ScentCone, He said GoPro numbnuts, as in the video camera company, not GOP as in Republicans.
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
As copyright owner of this comment, I authorize everyone to defeat any technological measure which limits access to it.
Its too bad stem cell research is so crushed and unable to be attempted. Whats the worst that could happen? Nothing. The best - she may get /something/ back.
But there is something powerful in the connection between a mother and her baby. Skin to skin contact between mother and baby and may aid in recovery.
I second that advice.
As she still has higher functions, and she's still able to communicate (throuhg blinking), the most important thing is to ask her what she wants, and respect her choice.
If she asks the plug to be pulled, respect her choice.
On the other hand, as she had recently a child, chance are high that she'll want to fight to be able to see the child grow and know that the child won't stay motherless.
So aim at all the modern brain-computer interfaces.
"Sufficiently advanced satire is indistinguishable from reality." - [Tips: 1DrYakQDKCQ6y52z6QbnkxHXAocMZJE61o ]
Prove your smugness and faux-intellectual stance.
Stop any absurd emotionalisms - they're just biological tricks to manipulate you into doing what evolution needs you to do... but of course evolution is unguided so it has no "goals" and therefore "needs" nothing from you. Drop the phony concern for anybody but yourself. Once your kids are off on their own, you've done your part.... you and your spouse are disposable.... actually, there was no REAL reason for you to care about kids since they [a] sap your resources [b] will not extend your life and [c] you'll forget them the moment you die. Any pro-child ideas you had were invalid psychological/biological tomfoolery that distracted you from seeking more pleasure before you die. Other stuff is a similar irrational distraction - there's no reason for you to personally do ANYTHING to advance mankind since you'll die and get no pay-off. Heck, (I'm sure you think there's no "hell") just kill anybody who upsets you or gets in your way (if you think you can get away with it, if you think you might get caught it's probably not worth it, there's no MORAL reason not to) and take whatever you want (as long as you think youll get more benefit than any likely cost).
I just love all the people who live in a mostly-peaceful and civilized world built (largely) on centuries of belief in religion and morals derived from religion, who declare that "religion" is evil/expendable. First: "all religions are equal" is as non-sensical as "all philosophies are equal" (they are CLEARLY not - the SUBSTANCE matters). Second: if "theism is evil" as you assert, then be intellectually honest enough to leave ALL of it behind and only limit you behavior in ways you can tie to UNGUIDED and GOAL-FREE evolution (making no presumptions about even what might be "more evolved" or "less evolved" in the construction of your new "moral compass")
I know this is gonna sound like a joke, but it really isn't. :
From personal experience
Bring in the most annoying jerk she's ever met, and have him constantly try to communicate with her.
It worked for my ex-wife (who suffered a stroke so massive the head surgeon couldn't tell from the scans how many vessels had ruptured). Her brain was a literal bloody mess.
11 months coma.
I was the jerk.
Her first eye expression upon awakening was FUROR at having me near her. :
Her first hand gesture was an angry fist raised at the nurse.
Her first words 5 weeks after her awakening were
"How could you... him..."
Afterwards, she told me that the mere feeling of having me nearby made her want to scream so much that in the end it was (and I quote) "her lungs that ordered her brain to wake up to full consciousness".
No kidding.
I was THAT good.
Best of luck, never despair, have trust in her, in her body, in her soul. Whatever happens will be for the best.
Don't give up.
Look into fish oil supplements. Has been shown to aid in recovery from brain injuries.
IF you believe [a] that there IS a creator of the universe, [b] that you have the writings of people who communicated directly with Him at specific times and places and with specific claims of the content of the conversations (just like some silly people think they have the writings of people who claim to have seen some other guys called things like "Ceasar", "Pharoh", etc), [c] that those writings indicate that He does listen and wants people to speak to him, etc.
I'm not the earlier poster, nor am I pushing a particular belief, I'm just laughing at the goofball nature of your rant and pointing out how inconsistent people who think like you do can be. Your presumption is that there is no creator, and from that completely un-substantiated starting point you presume to ridicule people for behaving in a completely rational and consistent manner that you yourself would follow if not for the singular matter of your arbitrary initial presumption - made only because you prefer to believe what you do and NOT because of any special facts. I'll bet you accept as fact many other things with exactly the same evidence. MOST rational people take the contents of books seriously when [a] those books are not specifically labelled as "fiction" by the authors, [b] they concern ancient history and are written by people who were there at the time, or were the closest to the events/times of the authors and such, [c] are not obviously wrong by current proven contradictory evidence. Note: a book claiming the Earth is made of purple jelly would obviously be considered fiction because the assertion is provably wrong, but a book claiming Ceasar Augustus liked grapes (written by somebody of his time who claimed to have spoke with him) would be presumed correct (even though the assertion was not proven) because of a lack of current proof (or superior contemporary records) to the contrary.
Again: the argument I'm making is that it's YOU who is making an inconsistent presumption and then ridiculing other people who've not made your presumption when THEY act rationally within what would otherwise be a normal framework. Want to ridicule religious people? Go for it - but at least be MORE rational than they are rather than just a clod.
Because it is the most logical choice for all. It's /. We're practically unfeeling, uncaring, and unsympathetic Vulcans. Live long and prosper. Not live long as a burden.
You say people suck as human beings for the decisions they make all the time. Your hypocrisy is unsurprising.
Don't judge a man until you've walked a mile in their shoes. That way you'll be a mile away and you'll have their shoes...
There was a This-American-Life recently about a 'locked in' who actually could feel her boyfriend writing letters in her palm (or something like that). Helen Keller and Stephen Hawking proved that even with limits there can be more life than one thinks.
Greetings.
I study communication and meaning, and what is apparent to me, and what one wishes to share with you, is that if one wants to communicate with any intelligence, use a solid context. This establishes trust, and in trust, a great deal of information can be exchanged. So, start with arithmetic:
Take the integers from 1 to 3, and say out loud: "1 divided by 1 is 1, 2 divided by 1 is 2, 2 divided by 2 is 1, 3 divided by 1 is 3, but 3 divided by 2 is not an integer, and 3 divided by 3 is 1" while indicating these numbers in a chart like this:
100
110
101
Where the 1 indicates factors and 0s fractions of integers. If you can both agree on this, communication with become much easier. It might sound crazy, but for someone who is going to be locked in, context is going to become very short, and this might become very helpful.
This device was on a recent Ted Talk. It looks very promising and is really inexpensive. http://emotiv.com/
The Poetry of Google Voice is very strange.
gv-poetry.com
Many people could learn much, from your rigorous skepticism! If I may indiscreetly boast a little in fraternal camaraderie, I share your gift, though to a lesser degree. By seeing through some people's bullshit, we have learned to discern much knowledge about the world.
The year is 2014, and guy walks up and shouts, "I'm Napoleon Bonaparte! Soon, Europe shall be mine!" Further confounding us, this is immediately followed by a second guy on his heels, who claims, "I'm Arthur Wellesley, Duke of Wellington. Your army will soon be defeated, Napoleon!" Right off (so much quicker than I, I must admit [I bow to you]), you are squinting suspiciously at the second guy, a sneer of distrust on your face. It takes me a while to trace your logical steps, but eventually I arrive at the same elementary conclusion that you did: that he is Wellington, is totally preposterous! Why? Because Wellington has been dead over 150 years!
It's so simple, a child should be able to see it. Yet, few people realize what we do.
So while the rest of Slashdot reels in confusion, not knowing what is going on and what is going to happen next, we have already figured it all out. We divest or short-sell various European enterprises, invest heavily in French war bonds, and await the riches that shall soon be ours. Everyone else thinks we're mad fools, but soon, they will gape in amazement at our prescience.
Using the power of reason alone (so simple, yet so rare), we have determined that that no one stands in Napolean's path, to prevent him from conquering all of Europe.
As copyright owner of this comment, I authorize everyone to defeat any technological measure which limits access to it.
It might be very early to do anything else and time is what she needs...
Long term if no improvement there is some promjsing research at Albany Med, but it does require opening the skull and mapping electrical potentials off the surface of the brain.
Seriously listen to the advice of the expert physicians caring for her and her prognosis. I wish her and yoir family patience and strength at this time.
or 10secs on google.
SLP: Speech and Language Pathologist
AAC: Augmentative and Alternative Communication
I'm not a medical doctor, but I am a research neuroscientist.
First, my condolences for this incident and best wishes for a good recovery.
Right now, if even her eye control is limited and tiring, you should consider only asking vital things (checking on pain, hunger, etc). Anything will be tiring for a while yet. For the future, here's an overview of what I know about the options available. I can think of basically 6 classes of technology.
1) Eye tracking. The low-tech version is a transparent board with letters and a few words. Line yourself up behind it, and watch her eyes. Read out letters as she dwells on them. The high-tech version is a device like the Tobii mentioned in previous comments (these are fairly pricey). So you're warned, these are surprisingly tiring to use.
2) Head tracking. Small head movements can be translated into computer cursor movements. If she regains a bit of neck movement, these can be less tiring to use than eye tracking, but at the moment it sounds like she doesn't have any neck movement.
3) Fully custom physical devices to exploit any residual muscle control. For example, Stephen Hawking's setup (expensive because it's custom), or blink codes like you're using.
4) Surface ("stick-on") electromyography sensors (EMG), placed on her lip or above her eyelid. This amplifies small muscle contraction signals and could prove less tiring than making an actual blink. You can then pipe the muscle activity over a speaker, and hear when she makes a muscle contraction. You can then use it like a blink code. The equipment is "only" $200-500, and they likely have them at the hospital already.
5) EEG. Honestly, this technology is still mediocre -- tiring and low-bandwidth. However, it will work even with absolutely no residual movement, and is not invasive. If you do want to try this route, use a medical-grade setup. The consumer-grade ones mostly read out subconscious movements of scalp muscles and are nearly useless.
6) Brain implants. There are two basic kinds: (1) electrocorticography (ECoG) which uses relatively large electrodes that go between the skull and the brain (either over or under the dura), and (2) penetrating "intracortical" electrodes that go a millimeter or two into the brain (most of the few research groups doing intracortical neural prosthetics use the "Utah" array). These technologies are both in clinical trials and it will be some years before they are widely available. You would also definitely need to wait until your sister-in-law is totally stable before putting anything inside her head. If at some point you do have the choice between these two, I would recommend the intracortical route. The surgeries appear to have comparable risks, and the performance from the intracortical devices is much, much better.
Best of luck.
for some time i was using a Mindwave, the poor man's EPOC.
it measures at least two parameters (they call them 'attention' and 'meditation') or mindwave patterns, which you can get to control to some extent, depending on practice and... well, how your head works.
i think if it's possible to get a fine control of those two variables, it could be possible to develop some kind of brainwave controlled blinkboard, and spare your sister-in-law the effort of blinking again and again.
might be wort a shot.
I am currently in graduate school for Biomedical Engineering and have looked into this a bit. Electroencephalography (EEG), ElectroOculography (EOG) and Electromyography (EMG) are all methods that can be used.
tl;dr version: Check out the EEG Based P300 speller system by Intendix. I think this is something you can buy and use right now.
http://www.gtec.at/Products/Co...
There is also a similar open source system based on OpenViBE (an open source Brain Computer Interface (BCI) platform) : http://openvibe.inria.fr/openv...
Here's a bit more detail:
There are several options, none of them extremely good. EEG or blink based systems are probably your best bet. The EEG based systems rely on something called the P300 Event Related Potential (ERP). Basically, the user pays attention to one object, waiting for an event (e.g., a letter on an on-screen keyboard). The brain's recognition of the event evokes an EEG signal that can be easily detected. These are kind of slow, but the tech has been around for more than a decade. This is the first kind of system to let a locked-in patient communicate with the outside world.
Blink based interfaces are very easy to build -- I've built one myself using a BIOPAC system, several electrodes, and an Arduino using a combination of EEG and EMG signals. You could probably do it using an instrument amplifier and an arduino alone. For a very similar system to what I built (currently unpublished), see "Virtual keyboard BCI using Eye blinks in EEG" by Chambayil et al at: http://ieeexplore.ieee.org/xpl...
There are also several invasive systems (i.e., those that require brain surgery) which have been tested. Most of these rely on Electrocorticography (ECoG), where an electrode array is implanted on the brain. Both computer cursor and wheelchair control have been achieved. This is probably not where you want to go.
Check out the Cortech Solutions EEG based spelling device: http://www.cortechsolutions.co...
Here are some scientific articles that are relevant:
“Bridging the Brain to the World: A Perspective on Neural Interface Systems” John P.Donoghue. Neuron 60, November 6, 2008 p511-521
(Chambayil, Brijil, Rajesh Singla, and Rameshwar Jha. "Virtual keyboard BCI using Eye blinks in EEG." Wireless and Mobile Computing, Networking and Communications (WiMob), 2010 IEEE 6th International Conference on. IEEE, 2010.)
Good luck, and feel free to message me privately if I can provide more information.
This story may provide you with some hope. Good luck to you all.
My sincere condolences. I will hope for the best for your sister in law.
You might want to consider Occulus Rift or VR at some point. I imagined myself in that situation, and that's what I came up with.
There would be theraputic value in running through some programs that possibly simulated mobility (take the person to their favorite place).
A telepresence/VR application might help the person be part of family / society. Couple this with some of the previously mentioned communications methods.
Good thoughts being sent your way.
Try giving her Ambien. It has been very successful with vegetative-state stroke victims (I know she's not vegetative). It's pretty amazing how well it works.
@ScentCone, He said GoPro numbnuts, as in the video camera company, not GOP as in Republicans.
Which is why his kind's typical advertising for companies is disgusting. We're talking about a wife in a coma, and the Republicans like mbeckman hate sick people. They want them to die. That is why they oppose the ACA. They want millions to be turned away at the ER because they don't have a Gold Card. That is their way. That is what he is demanding. Obviously he owns stock in Go Pro which is why he is pimping them. I am tired of seeing their nonstop spam on /. I wish him and his kind would be banned.
Also, we call them GOPpers here. You must support them and their kind if you insist spelling their name correctly. That insults the progressives here.
I had a cerebral hemorrhage near my brainstem. While I wasn't completely cut off from my body, it really messed up the interface for a while. The good news is that function can come back. Contrary to popular belief, the human brain does grow new nerve cells and can repair the damage done. The bad news is, it is going to take a long time. It's going to take years, not months, to get back to functional, much less normal.
Frustration and Humiliation
First off, everything is working normally inside. She is still who she is. She is still thinking, working, trying to communicate, listen, getting bored, wanting to do things. She is fully aware of what is going on around her. She can hear and see you just fine. You speak, she can hear and understand what you are saying. She is not an invalid! Don't treat her like one!
One of the most frustrating things I had to deal with outside the disturbance in motor functions was the difficulty I had in communicating. My thinking worked just fine, I could think up my answer to any question instantly. The problem was getting my body to actually produce the sound and form the words. I had to think of the answer, consider how each word would sound, think out how my mouth needed to move, and then send the speech command to my body. As a result, I was always five minutes behind the flow of the conversation. It's like having an ultra-powerful supercomputer, and you go from having a high-speed, fiber-optic, giga-net broadband connection down to something less than a 300-baud acoustic modem. I reached a point where I just stopped trying to talk. My family just didn't understand or comprehend what was going on inside me. When you ask her a question, give her time to respond. YOU must learn to be patient. She has no choice in the matter at this point.
She's suffered a complete loss of bodily function. It isn't that she can't move, it's that she now can no longer do anything for herself. She can't feed herself. She can't clean herself. She can't amuse herself when bored. She can't control her bodily waste functions. She cannot clean herself after she expels something from her body. Someone else has to do it for her.
This is humiliating! The humiliation is the worst feeling of all. It gnaws at you. It erodes your desire to try. It corrodes your soul. It removes your will to live. You lay there in your hospital bed in a muddy puddle of your bodily waste, wishing you could reach the control for the pain meds and have it dump everything all at once into your IV line and just end the humiliation forever.
People talk to you like you are a child, an idiot. And always in a loud voice. They talk at you. They talk about you. But never to you. They talk about you in the third person as though you aren't there, in the room, laying in the bed right in front of them.
Do what you can to maintain her dignity as a person. Don't treat her like she's a doll laying in the bed. Remember there is a person in there. Treat her like one. And I'll warn you, that will take a LOT of patience on your part.
Breaking Out
When my hemorrhage hit, it felt like someone buried a pickaxe into the back of my head. It hurt. I knew something was horribly wrong, but I couldn't figure out what it was. It never occurred to me I had a burst aneurism in my head. I did't just drop to the ground paralyzed. I managed to get up the stairs and say I needed help before things started going bad in a hurry. An ambulance ride later, I was in the hospital. Initially, I stabilized and they sent me home. But a few hours later, I realized I was getting worse and got taken back to the hospital. Over the next few days, issues would come and go, and when they would go, they took things with them. I ended up in a hospital in Boston for the next several weeks.
Brain injuries are awful things on more levels than people consider. It is absolutely the worst injury you can endure. It is at the very core of your interface with the Universe. It can and does effe
Whew! This water sure is cold!
Always assume she can hear and possibly see everything that is said and happens around her. Encourage your family to carry on a one-way conversation with her even if she seems unresponsive. Try two-way, even if it exhausts her, but other times just tell her what's happening, even the mundane stuff at home. Keep pictures of the baby where she can see them. You might try putting an LCD picture album in her line of sight where she can simply look up at it. Bring the baby in, set him on or next to her, put her hands on him. It's entirely unclear whether she can feel the child even if she can't move. She may only be able to see her hands on the child; I suspect this could encourage her. Perhaps not, but try it. Do this as often as someone in your family can bring him over. Don't ignore any advice professionals may offer about physical therapy to help. Do that too. Plan on doing this for the long haul, that is, years. It will take mental and emotional endurance to do this for years. In families there are always people you don't really get along with, but you may find even they need, and will benefit from whatever encouragement you can give.
Watch your own attitudes. It is really, really hard to see someone you care about in that kind of condition. It becomes very easy to translate your own pain and discomfort into the certainty that the locked in patient really wants to die. If this ever comes up at all, everyone who is involved in the decision should be "analysed" or in some way examined professionally to be sure the desire to die isn't really coming from them, rather than her. If a wish to die is genuinely from her, it may still be the most horrible thing that happens to your family. Worse than the onset of this event, even. I can't think of anything more horrible than the family of such a patient becoming genuinely convinced of the patient's desire to die, pulling out the feeding tubes to allow the patient to die while the patient is desperate to communicate in any way possible, and unable to, that they want to keep on living.
She may surprise everyone and recover some or even completely. The brain is still a mystery and neurologists don't understand why it happens and can't predict when or if it will happen. I don't know if it will be necessary, but I hope you and her family can find endurance to support her for years to come.
Emotiv makes a head-mounted EEG brainwave device that is intended as an input for games. I've wondered, for exactly this scenario, about using that to control some kind of audio output for communication. Even if it's as simple as a blink code, it may be physically easier for her than blinking. If you have software that lets her control pitch and volume like a theremin, that's another degree of expression.
there a ton of people who will try to get you to pay the for magic solutions. They will prey on you.
Be patient, talk to her every day. red he interesting books, play complex music.
The Kruger Dunning explains most post on
Absolutely do what you can to work with the moment. But... While the doctors may be giving you bleak prognoses, from experience, they're pretty much winging it when it comes to the brain.
My wife was in a massive car accident. Shattered arm, collapsed lung, multiple breaks to her jaw, cracked eye socket, brain injuries. They induced a coma to keep her alive long enough to get her to a major hospital, called family to her bedside with a prognosis of, "IF she survives the night, it's 50:50 if she'll live." At that point, her brain stem was busy trying to retreat out of the back of her neck.
It was two weeks before they could get any response out of her, another two before she was aware. At that point, they wanted to amputate her arm and told her parents she'd never walk more than a few paces at best, would never look after herself.
Consent was given for the amputation though her mother asked the surgeon to simply do whatever he'd do for his own daughter. He spent eleven hours wiring it together and told her mother he'd most likely be back in to amputate but he'd given it a shot.
Fast forward two years, the arm survived. The girl who'd never walk more than a few paces was out of her wheelchair and starting to try to build a life on her own. In a settlement hearing (she'd bought "unlimited" coverage car insurance for the wreck she was in but there was small print saying they could modify at any time and they swapped it to $100k max five days before the accident) they acknowledged she was lucky to be walking but even the insurance lawyers, whose job was to minimize her injuries, acknowledged she'd probably never be able to return to school. No longer being able to read was a big part of that. And a huge loss to a National Merit scholarship winner, English major and librarian.
About another two years later... I'd taught her how to read again. She'd been living on her own. She returned to school. Started off barely making Cs. GPA went up every semester. She got straight As in her final semester. She now has two degrees, is a certified personal trainer and works in physical therapy. If she doesn't tell people about her injuries, they've absolutely no idea. Not bad for someone who the doctors declared would probably die, would never walk again, never look after herself and never return to school.
To message to take from this is that Traumatic Brain Injuries are absolute bitches but the medical profession has educated guesses about outcomes at best. You read up on neuroplasticity and the like and you realize they're really only just beginning to get an idea of what's possible. There are even stories of key researchers whose family members had strokes, who ignored all of the expert advice and got them back moving again by doing everything "wrong."
So days, weeks, months in... Just because the doctors tell you to prepare for the worst, don't give up. The brain does amazing things, often things they're completely clueless about it being able to do.
https://www.youtube.com/watch?v=KTFicgrVk0w
I found this video; don't get me wrong it's about someone wanting to end their life; but they use a board that he can relate what he's thinking, and it seem very quick. http://www.youtube.com/watch?v... just throwing it out in an attempt to be helpful.
Good luck to you.
is probably something that she would appreciate.
If there is any improvement, motivation to work to regain function is critical.
Brainwave monitoring equipment, without access to specific neurons, seems doubtful because you are monitoring the sum from a sea of neurons.
If there are any motor functions she can do, then something that monitors the nerves for these muscles seems a more likely path.
This might make using this path less tiring and also provide motivation to use and hence improve the path.
Show me some citations for your accusations? Fuhrman's main book "Eat to Live" is one of the most scientifically-grounded books on nutrition, with thousands of references to substantiate his points with evidence. That said, I don't agree 100% with everything he recommends (see below) in part because of the nature of the limits of what you can find in the scientific literature, as well as the difficulty of making sense of conflicting studies. There is also the fact that most nutritional studies start with a fundamentally sick and detoxified Western population (however good their basic vitals are) and so it may be hard to draw broad conclusions about what would be best for people eating very diferently to begin with. The future is individualized medicine based on genetics and the intestinal microbiome and also lifestyle and history, but we are not there yet. So, it is possible to question some broad recommendations he makes -- which is also shows the limit of writing books on a complex topic like human health for a general audience.
For examples of where I disagree some with Furhman, for many people (although not those at strong risk of hemorrhagic stroke), Fuhrman's advice on severely limiting salt intake may be questionable IMHO (versus just mainly avoiding processed foods and their salt load which makes them palatable). We need salt for brain function and stomach acid. While too much salt will create problems especially for some specific people, it is hard to know what the acceptable limit is in individual people, which also depends on how much potassium they eat and other aspects of their health. Most people probably should eat less salt, but how much less is an area of contention and there are some conflicting studies.
Furhman may also be a bit low on his vitamin D recommendations. He did base his recommendation on a scientific study related to vitamin D and mortality, but I feel there are other aspects to that beyond what he cited.
Maybe my biggest concern is that Furhman may not clearly enough state the importance of iodine and his recommendations are based on the US RDA for that which may be 10X too low (see Brownstein). The problem is that if you follow Fuhrman's advice to eliminate dairy (a good source of iodine since cows concentrate it from grass) without also adding sea vegetables or an iodine supplement to your diet (or iodized salt, see above), it seems to me you may become iodine deficient. This is especially true if you eat foods from one part of the world given many agricultural lands especially in Europe are iodine deficient. It is also true because we are exposed to so much bromine in Western countries which is an iodine antagonist, suggesting we need more iodine to compensate for that. The issue of iodine is one of emphasis about getting enough iodine given his other advice would reduce it and he suggests a low target to begin with. For example, here he does suggest iodine supplements, but not to emphasizing it to the degree he should IMHO given all the other aspects of his approach:
http://www.drfuhrman.com/libra...
In general, Fuhrman's advice to eat a lot more fruits and vegetables is also difficult to follow for most people living in a Western culture including due to cost of vegetables and fruits given US agricultural subsidies for grains and animal products. Also, eating such things out-of-season poses environmental and social costs for transport and supporting big farms in foreign countries which may not be well-regulated or engage in fair-trade.
Less-demanding (but less rewarding) whole-grain-heavy advice by John McDougall or Andrew Weil may be easier to follow and in the end thus achieve better overall results in our society for many who have trouble following Fuhrman's approach. Fuhrman originally trained as a world-class athlete (figure skating), so he seems to expect a lot of self-motivation and self-control in others -- as well as perhaps the financial resources to afford the best heal
A 21st century issue: the irony of technologies of abundance in the hands of those still thinking in terms of scarcity.
and pull the plugs. Really. This is no way to live.
Religous speak to God. Insane are spoken to by God. When all shut up, one can finally hear Shostakovich in peace
Try http://emotiv.com/ headset I'm sure someone could be more hands on and help write something to match her exact possibilities for communicating with this. Best of luck
Maybe http://www.theverge.com/2013/8/6/4594376/complete-paralysis-communication-through-math-problems
Could help
Maybe this would help
http://www.theverge.com/2013/8/6/4594376/complete-paralysis-communication-through-math-problems
If you can communicate at all you have help. i.e. Your loved one can help you ..... 5wpm is very helpful.
help. Consider that a finger is all you need for morris code and 30-60 words per min are
possible. Blinking tapping
This is a complex topic and there are as many avenues for therapy....
The most difficult aspect may be personal you may have to learn
something new... think sign language if hearing was lost for example.
Truth is stranger than fiction, but it is because Fiction is obliged to stick to possibilities; Truth isn't. Mark Twain.
Really sorry for your tragedy - really bad call on the part of neurosurgeons. That said there is actually a technology out there that has record of being successful in these cases, it is p300 speller brain computer interface - http://openvibe.inria.fr/openvibe-p300-speller/ . there are research labs around the world working with brain computer interfaces, you should contact one, they can help you.
There are a few neural gaming interfaces that are not prohibitively expensive. One of the fancier items is "emotive.con", which taps several cortical centers. Since the damage was reported in the brain stem, the EEG activity in the higher cortical centers ought to be intact.
She will still need training, but if it was me, I'd be damned happy to have a device like this.
you should take a look at this site: http://www.bit-tech.net/hardware/peripherals/2010/08/11/control-your-pc-with-your-mind/
and here: http://www.emotiv.com/store/
you should take a look at this site: http://www.bit-tech.net/hardware/peripherals/2010/08/11/control-your-pc-with-your-mind/
and here: http://www.emotiv.com/store/
the hardware is affordable and the possibilities massive, from training a communications panel with yes / no often used phrases etc, to controlling automations like robot arms etc. I do not know what country you are in but it might be worth talking to some local universities with good sized computer studies and engineering too and see if they might set some course work in to designing an interface (open source so it is free for others in similar situation but were there are just no or tiny amounts of funds for such things) and maybe some robotics too, they may well ask you to pay / provide some of the hardware, I am in the UK and I know there are many people that would help at the drop of a hat, if no joy there you could get a bespoke program or two written for you, there are interfaces that are used to play games so with some modification the joystick would be cursors so she could navigate up down left right over a keyboard or selection of words phrases etc. it will take some time to find the brain waves that are easy to read and easy for her to do without it draining her. With the right interface she should be able to communicate with you and surf the internet at least giving her some sort of life, I am disabled and spend my time in a wheelchair or stuck in bed and that drives me nuts the only thing that makes it better is having the internet, my window to the world. I could not even start to imagine suffering locked in syndrome, but this should at least give her some life again. I hope it helps; the hardware listed on the sites above is just one of many you would need to look in to what would work best for her with the doctors. And with such affordable technology you can afford to experiment till you get the results you want, and improve from there. I wish you the best of luck and hope others more in the know than me add to this post.
... at MGH -- Dr. Lee Hochberg. They're working on something called BrainGate, and I don't know too much about it, but they work on communicating with locked-in patients. It could be something to look into?
It is amazing how much energy is transmitted to the patient--either negative or positive. The doctors will give you a bleak outlook, but they have to to CTA (cover their asses). Educate yourself, read everything you can--the Diving Bell and the Butterfly, Stroke of Insight and anything else possible. I agree that bringing the baby in for brief (10 min or less) visitations should help as long as the baby is not fussy. I hope you are asking in other places as well. If you are in the USA, contact the American Brain Injury Association www.biaa.org as soon as possible. They can help you figure out which side is up, can give you contact numbers and all sorts of advice and support. I'm very sorry you and yours are having to go through this.
We build mobile apps using a Mindwave reader(simple headset to sense alpha beta waves) from Nuerosky. It can take two to three weeks to develop a reasonable control in being able to signal (two signals). We also have another more complicated headset from Emotiv, this claims to detect functional areas allowing more variations but we have not used it or tested it. The first one is simple to use and we are using it at the Center for disability studies for ADHD. Will also pray for her. Regards Sree
Here is a study where an attempt was made to communicate with a patient in vegetative state:
Patient in 'vegetative state' not just aware, but paying attention, study suggests
http://www.sciencedaily.com/releases/2013/10/131031110558.htm
If the patient is able to communicate by moving a muscle even slightly - a device can be made to measure muscle impulses and translate them to letters - something like Stephen Hawking uses...
From Wikipedia:
Hawking's disease-related deterioration has continued, and in 2005 he began to control his communication device with movements of his cheek muscles,[293][294][295] with a rate of about one word per minute.[294] With this decline there is a risk of him acquiring locked-in syndrome, so Hawking is collaborating with researchers on systems that could translate Hawking's brain patterns or facial expressions into switch activations.[244][295][296] By 2009 he could no longer drive his wheelchair independently.[297] He has increased breathing difficulties, requiring a ventilator at times, and has been hospitalized several times.[244]
PS: Brain condition can improve with time and training (look up neuroplasticity etc)... Don't give up just yet.
Since she is responding to verbal questions, her marbles are there. The essential thinking parts of the brain, the parts that will help keep her OCCUPIED and SANE through this awful time... are intact. But it is also possible that anything she attempts to do that may require visual perception and especially focus, will be difficult and frustrating.
Decide on a daily schedule for her that includes presence of family --- not just monologues, even two or more people in the room talking with one another is great. Hand holding, massage is a must. Also some time for her to listen to audio content with which she is presently unfamiliar, even when she is alone. And a firm block of time for sleep -- where a nurse turns off and removes any audio devices and dims the lights.
For the audio portion... delve into the great audio that is publicly available: great podcasts such as RadioLab, old time radio programs, chapters of audio books, certain songs of favorite music. Load an mp3 player with these and PLAY IT ON RANDOM SHUFFLE. If *I* was trapped inside my mind, I would much rather face a sense of not knowing what comes next in a mix of music and voice, even if it was out of sequence, which is stimulating --- than be double-trapped into listening to some audiobook in which I have long since lost interest.
Nothing creepy or scary, even if she likes such things! No crime or horror. Go for radio comedy or sitcom and variety like Fibber McGee or Roy Rogers, etc. You don't know how well the various parts of her brain are working, and many hospital meds (esp morphine) make one vulnerable to dark thoughts and paranoia. Chapters of Huck Finn and Tom Sawyer, 15 minute radio programs, RadioLab-type stuff (but not the creepy stuff) all shuffled together (when she is alone) or played through sequentially (when someone is present to ask her if she's enjoying it) would make for an excellent entertainment without the ultimate strain of conversation.
Bear in mind that she may be in this condition for awhile, and being exposed to audio material that is new to her might become a welcome part of her day.
All the best to her and the family in this difficult time.
<blink>down the rabbit hole</blink>
The same folks who make Dasher (http://www.inference.phy.cam.ac.uk/dasher/) also developed OpenGazer (http://www.inference.phy.cam.ac.uk/opengazer/) which uses commodity web cameras and a Linux box instead of the far more sophisticated (and expensive) Tobii eye tracking system.
Some folks with droopy eyelids can't use Tobii, as not enough of their eye is visible to the cameras. OpenGazer can recognize facial gestures (as part of their Gesture Switch mode), and use those to drive switch input systems, as well as to drive Dasher. This is a much less expensive option than Tobii, and may work as well or better for her.
Best of luck with this - you have my sympathy for what you and your family are going through right now.
A one-size fits all technical solution doesn't yet exist. Begin with low tech, use a pointing board and watch her eyes and face and see if she is able to move any other part of her body. Try to develop a personal communication technique and learn what she is capable of. Move to something like an iPad or Android ask her if there is something she would like to see, music, movies something to help her focus on something other than the fear, pain and bordem. Give her hope. While she is recovering and in rehabilitation, research Dasher and OpenGazer to see if it would help her communicate. Gently support those who are closer to her but who might not have your level of medical or technical understanding. Help them give her the attention, space, touch, rest and love when she needs it.
I wish you and your family well. Look for information and try to support the Christopher Reeve Foundation and other organizations who are working hard on making life better for people with paralysis injuries. I understand that for other types of paralysis injuries, doctors/psychologists often recommend not to give the person hope that a "cure" is eminent because even if a cure is available now, it may be years before it is widely available and it will almost certainly require rehabilitation and that the person is kept mentally and physically healthy until a solution is found.
I agree, right now she needs human contact attention, hope, understanding and patience from those around her. Start with low-tech pointing board, watch her eyes and any other expressions she can make. Just as those who lose a sense rely on others, she must rely more on non-verbal communication and those around her must know how to listen. Let her see and touch her baby. Help her to overcome the panic, fear, helplessness and dispair. Help her friends and family.
Once you're ready to move to more technology, start with an iPad or android tablet. Ask her if she would like to see any movies, or listen to music (her partner and family should be able to suggest favorites.) Read Oliver Sach's Musicophelia for information on the neurological healing power of music.
While she is going through rehabilitation, research Dasher and OpenGazer for eye and head tracking to see if they might be useful. Read about coping with paralysis injuries and the possibilities for recovery from The Christopher Reeve Foundation. Make sure that hoping and praying for a cure doesn't morph into "waiting and expecting for a cure." she and her family may have to learn to live with this condition for years even if there is hope on the horizon. I wish you, her and your family well.
The original author of this article had a specific request, maybe it was answered among over 500 comments but quick peek shows people expressing their ethical/philosophical views about this tragedy (which is not the question here).
Back to the main question re how/device/etc - Please look into a product called Muse from a Canadian startup called InterAxon, http://interaxon.ca
I have ordered one but don't have it yet, so can't give you a first hand summary, however, this podcast from KCRW has a very interesting 1/2 hour interview with the founder of InterAxon.
http://www.kcrw.com/news/programs/in/in130731thought-controlled_c
Hope this helps, and like many have already expressed, I'm sad and sorry about what has happened.
Regards; //P.S. a note to slashdot - i dont yet have an account to login, easy to setup I'm sure but no reason to call me anonymous coward for answering this question.
Brain injuries change rapidly in the early periods after the injury. It can easily take months to years to come to a realistic assessment of the long-term consequences of an injury like this.
My mother had a series of minor strokes a couple of years ago. Her mobility and cognitive state are still recovering nearly two years later. That's normal for brain injuries.
A couple of weeks after an injury like this, nobody should be making any long term decisions. Including the patient.
Birds are not dinosaur descendants;birds are dinosaurs, for all useful meanings of "birds", "are" and "dinosaurs"
When I read "lock in syndrome" I was expecting a story about phb only going with non-fud technologies, and are locked-in to ab^H^Husing it My condolences.
P2P Anonymous Distributed Web Search: http://www.yacy.net/
I am a little gun-shy about commenting; Been reading Slashdot daily since lat 90's but I think this is the first time I have ever commented.. That said, I am unable to get this story out of my head on the basis I might be able to help... Although I am a Machine Learning Computer Scientist, I have been working with EEG technologies for the last 6 years.. If you have not had anyone reach out and offer help, please let me know and would be happy to see what I can do.. not sure how I give you my contact info, but happy to chat about it... Again.. Sorry for being such a newbie..