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Ask Slashdot: Communication With Locked-in Syndrome Patient?

Soulskill posted about 7 months ago | from the our-thoughts-are-with-you dept.

Communications 552

cablepokerface writes "We've had a significant family catastrophe last weekend. My sister-in-law (my wife's sister) is 28 years old and was 30 weeks pregnant till last Saturday. She also had a tumor — it was a benign, slow growing tumor close to her brain-stem. Naturally we were very worried about that condition, but several neurologists assessed the situation earlier and found the tumor to be a problem, but not big enough for her to require immediate surgery, so we decided to give the baby more time. She was symptomatic, but it was primarily pain in her neck area and that was controlled with acceptable levels of morphine.

Then, last Saturday, our lives changed. Probably forever. In the hospital, where she was admitted earlier that week to keep an eye on the baby, the tumor ruptured a small vessel and started leaking blood into the tumor, which swelled up to twice its size. Then she, effectively, had a stroke from the excess blood in the brain stem. In a hurry, the baby was born through C-section (30 weeks and it's a boy — he's doing fine). Saturday night she had complex brain surgery, which lasted nine hours. They removed the blood and tumor that was pressing on the brain.

Last Sunday/Monday they slowly tried to wake her up. The CT scan shows all higher brain functions to work, but a small part of the brain stem shows no activity. She is locked-in, which is a terrible thing to witness since she has virtually no control of any part of her body. She can't breathe on her own, and the only things she can move, ever so slightly, are her lips, eyelids and eyes. And even that's not very steady. Blinking her eyes to answer questions tires her out enormously, as she seems to have to work hard to control those. The crowd on Slashdot is a group of people who have in-depth knowledge of a wide range of topics. I'm certainly not asking for pity here, but maybe you can help me with the following questions: Does anyone have any ideas on how to communicate better with her? Is there technology that could help? Like brain-wave readers or something? Does anyone have any ideas I haven't thought of regarding communication with her, or maybe even experience with it?"

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As painful as it is... (-1, Flamebait)

Anonymous Coward | about 7 months ago | (#47074639)

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.

Re: As painful as it is... (-1)

Anonymous Coward | about 7 months ago | (#47074651)

Yep let her die no one wants to love like that and if she says she dies it's just to make you feel better.

Re:As painful as it is... (0, Insightful)

Anonymous Coward | about 7 months ago | (#47074675)

Somehow I knew that "pull the plug" was going to be the first piece of advice from the Slashdot crowd.

Re:As painful as it is... (-1, Troll)

MightyMartian (840721) | about 7 months ago | (#47074971)

What did you expect from a bunch of Ron Paulite sociopaths?

Re:As painful as it is... (2, Insightful)

Anonymous Coward | about 7 months ago | (#47074699)

Or considering that she has even a slight ability to answer they could ask her.

Re:As painful as it is... (2)

shaitand (626655) | about 7 months ago | (#47074723)

They probably can't. Euthanasia is illegal in most places. If she has higher brain function that probably isn't a legal option.

Re:As painful as it is... (0, Troll)

dave420 (699308) | about 7 months ago | (#47074763)

So you'd prefer to bow to a clearly unjust law and let a loved one suffer like that? You suck as a human being.

Re:As painful as it is... (5, Insightful)

mellon (7048) | about 7 months ago | (#47074841)

Wow. Just wow.

Life is suffering. We can all certainly avoid a great deal of suffering by killing ourselves painlessly now, whether we are locked in or perfectly healthy. But life is sweet as well. Dying forecloses on the possibility of further sweetness. This person clearly hasn't given up on further sweetness. This is not a good time to get into an argument about your favorite political hobby horse. I won't say that you suck as a human being, because I'm sure you have some legitimate and possibly heartbreaking reason for having said what you said. But context is everything, and this isn't the place.

Re:As painful as it is... (4, Interesting)

Anonymous Coward | about 7 months ago | (#47074951)

We've had similar predicaments in the family, and my dads uncle is in jail (life time sentence) for making the 'human choice' - which was illegal.

It's easy to say someone sucks as a human being, but are you really willing to sacrifice your own life, to euthanize someone elses? (effectively ending two lives at once)

Re:As painful as it is... (1)

FatAlb3rt (533682) | about 7 months ago | (#47074975)

Dave, way to douche it up.

Re:As painful as it is... (1)

wisnoskij (1206448) | about 7 months ago | (#47074823)

I think that is why they simply turn off the machines. It is always illegal to kill someone, so they simply allow them to die relatively slowly and in pain to get around it.

Also, theoretically he cares about her. Should some law prevent him from doing what is right?

Re:As painful as it is... (3, Insightful)

Bartles (1198017) | about 7 months ago | (#47075027)

How about the wishes of the fully conscious patient? Maybe that should prevent him from doing what you think is right.

Re:As painful as it is... (5, Informative)

Bartles (1198017) | about 7 months ago | (#47074939)

If she has higher brain function, and from the summary it seems she has full higher brain function, pulling the plug without asking her would be murder.

Re:As painful as it is... (4, Insightful)

kermyt (99494) | about 7 months ago | (#47074731)

Consider unplugging the machines. That's no way to live. Not for her, not for anybody around her. I know it's a terrible prospect, but euthanasia is often the dignified way out.

While I would agree with you in the long term if there were absolutely no further room for recovery. However It is very likely that she will still gain back some of the motor controls she has lost. (though likely not all of it.) Brains have an amazing capacity for rewiring around damage, but it takes time and enormous effort on the part of the patient.

Re:As painful as it is... (2)

Bartles (1198017) | about 7 months ago | (#47074985)

So you are advocating pulling the plug on quadripelegics, because they have no motor control? You people disgust me. She has full consciousness and ability to think. She can communicate by blinking. Why don't they just ask her?

Re:As painful as it is... (4, Insightful)

MightyMartian (840721) | about 7 months ago | (#47074991)

I'd agree with this. This is very early days, and while the road ahead is difficult, she could recover far more than is immediately obvious.

Re:As painful as it is... (-1, Troll)

wisnoskij (1206448) | about 7 months ago | (#47074769)

Came here to write this^.

Does anyone think there are any other reasonable alternatives for vegetables?

Re:As painful as it is... (1)

Jeff Flanagan (2981883) | about 7 months ago | (#47074967)

She's not a vegetable. This is much worse, but I'd want to be very sure that she can never recover any quality of life before pulling the plug.

Re:As painful as it is... (2)

Bartles (1198017) | about 7 months ago | (#47074997)

She's not a vegetable you idiot.

Re:As painful as it is... (1)

MightyMartian (840721) | about 7 months ago | (#47075009)

We could always ask your parents.

Re:As painful as it is... (0)

Anonymous Coward | about 7 months ago | (#47074793)

Sounds painful. Give her an inert gas asphyxiation option. Explain that to her before asking if she wants to die.

Re:As painful as it is... (3, Insightful)

BradMajors (995624) | about 7 months ago | (#47074849)

That is her decision and not his to make. Unplugging the machines when she doesn't want them unplugged is murder.

She should have a say (1)

OglinTatas (710589) | about 7 months ago | (#47074855)

hence the question about communicating with her

Re:As painful as it is... (2)

markhahn (122033) | about 7 months ago | (#47074883)

this is NOT insightful.

we (medical or scientific communities) do not have the understanding to guide such a decision. we simply can't tell when a patient will never recover.

I personally would not want to be kept alive without prospects of a quite high quality-of-life. others certainly have different thresholds, and none of us can gainsay that preference. to do so is murder.

Re:As painful as it is... (1)

Jeff Flanagan (2981883) | about 7 months ago | (#47074993)

Add the fact that communication is possible with blinking in this case, and it should absolutely be the patients choice, maybe with a delay imposed if there's some chance of at least partial recovery.

Re:As painful as it is... (5, Informative)

tylikcat (1578365) | about 7 months ago | (#47074913)

I can re-check the research, but IIRC, most folks even, after they've had some months to get used to their new situations prefer to live than to die. (It's easy to project what you think your preferencs would be... but you in the situation is not you watching it from outside. I haven't been through anything nearly this severe, but I dealt with a spine injury which I was told meant I would never live an active life again*... and mostly learned not to try and second guess future me.**)

* This turned out to be incorrect, but there were some years in there that were chock full of suck.
** Which doesn't mean I don't have a living will, but did influence how I wrote it.

Re:As painful as it is... (4, Insightful)

Noodles (39504) | about 7 months ago | (#47074925)

The question was about methods of communication, not "should she be allowed to live?"

Guitarist Jason Becker communicates very effectively using his eyes. Look up information about him.

Re:As painful as it is... (0)

Anonymous Coward | about 7 months ago | (#47075005)

just withdraw care, you dont need euthenasia, feeding tubes and such are just extending the torture, dont give iv fluids either, this is a horrible case, very very sad but it is really necessary to just let her go. In my medical experience it is just cruel to keep her alive.

Re:As painful as it is... (1)

thegreatbob (693104) | about 7 months ago | (#47075017)

You shouldn'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.

i'm sorry. (0)

Anonymous Coward | about 7 months ago | (#47074641)

yeah, that is really sad, sorry.

Morse code a la Johny Got His Gun by Dalton Trumbo / One by Metalica?

I'll get flak for this (1, Insightful)

Anonymous Coward | about 7 months ago | (#47074647)

but there will be many people praying for you

Re:I'll get flak for this (-1, Flamebait)

SuricouRaven (1897204) | about 7 months ago | (#47074667)

Is she healed yet? Nope.

Re:I'll get flak for this (1, Insightful)

Anonymous Coward | about 7 months ago | (#47074689)

You, sir, are an asshole. Who cares if you don't believe (not sure I do, either)? It's unnecessary to post something like this.

Re:I'll get flak for this (0, Troll)

TechyImmigrant (175943) | about 7 months ago | (#47074705)

Theism is evil. It is right to call it every time.

Re:I'll get flak for this (2, Insightful)

Anonymous Coward | about 7 months ago | (#47074741)

It's unnecessary. If someone wants to believe that their thoughts are in some way helping another, who cares (so long as they are not out killing people in the name of their religion or otherwise infringing upon others). At the very least, it may be comforting to the family to know that they are in the thoughts of others.

If the OP had said "but there will be many people thinking about you", no one would have had a problem with it. But since he used the word "prayer", it's important to ridicule him?

Re:I'll get flak for this (-1, Troll)

TechyImmigrant (175943) | about 7 months ago | (#47074817)

Yes. Once we rid the world of theism, the world will be a better place.
Necessary isn't necessarily nice.

Re:I'll get flak for this (1)

FatAlb3rt (533682) | about 7 months ago | (#47075021)

I'd vote for getting rid of the fucksticks first.

Re:I'll get flak for this (0)

Anonymous Coward | about 7 months ago | (#47074757)

You're a liar.

Re:I'll get flak for this (0)

Anonymous Coward | about 7 months ago | (#47074875)

Atheism is evil. It is right to call it every time.

Re:I'll get flak for this (1)

Bodhammer (559311) | about 7 months ago | (#47074695)

you're a douche...

Re:I'll get flak for this (1)

wisnoskij (1206448) | about 7 months ago | (#47074829)

"Nope."

how would you know? Are you claiming to be some sort of psychic?

Re:I'll get flak for this (0, Troll)

Anonymous Coward | about 7 months ago | (#47074681)

You think the creator of the universe listens to you? What arrogance.

Re:I'll get flak for this (0)

Anonymous Coward | about 7 months ago | (#47074811)

But I do...

Re:I'll get flak for this (1)

mellon (7048) | about 7 months ago | (#47074877)

If there is a creator of the universe, why wouldn't he/she/it listen to you? If there is not, why argue about it? When something terrible like this happens, people care, and they want to do something, but there's nothing they can really do. So they pray, if that feels right to them. It really doesn't matter whether it works, or whether somebody is listening. It's just what we do.

Re:I'll get flak for this (-1, Troll)

Rei (128717) | about 7 months ago | (#47074955)

I'll be asking my imaginary friend to use magic on her, too!

Re:I'll get flak for this (0)

cyborg_monkey (150790) | about 7 months ago | (#47074969)

Not sure how that is insightful. If anything, it's the opposite.

Re:I'll get flak for this (1, Insightful)

polyp2000 (444682) | about 7 months ago | (#47074983)

The last thing i would want if i was dying would be people praying for me. "And patients who knew they were being prayed for had a higher rate of post-operative complications like abnormal heart rhythms, perhaps because of the expectations the prayers created, the researchers suggested." http://www.nytimes.com/2006/03... [nytimes.com] N

Yes, there are methods available (5, Insightful)

wanax (46819) | about 7 months ago | (#47074657)

Yikes, that sounds like a terrible experience. My sympathies to your sister in law and the whole family.

There are several methods available, most prominently implanting arrays of electrode over pre-motor cortex, which can then be decoded online and used to control a computer pointer.

See for example:
http://www.youtube.com/watch?v... [youtube.com]

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

Re:Yes, there are methods available (1)

bluefoxlucid (723572) | about 7 months ago | (#47074719)

And I must scream [tvtropes.org] .

Re:Yes, there are methods available (5, Informative)

sconeu (64226) | about 7 months ago | (#47074937)

My late wife had ALS. We used a Tobii [tobiiati.com] assistive communication eyegaze computer. It didn't use blink, it used eye dwell time for "click".

Since blinking is tiring, perhaps this might be of more assistance.

Re:Yes, there are methods available (1)

sconeu (64226) | about 7 months ago | (#47075031)

Never mind. I misread TFS. I thought it was the blinking that was the problem, but it's the whole eye control, not just the blink.

I'm so sorry for you.

Start recording her facial movements immediately (5, Insightful)

mbeckman (645148) | about 7 months ago | (#47074659)

I'm not a medical expert, but work in computer forensics. I think it's wise to begin recording her facial movements immediately to establish a baseline of activity and determine when improvements or declines occur. This seems like something easily accomplished with today's off-the-shelf technology, such as GoPro style digital cameras.

Re:Start recording her facial movements immediatel (-1, Troll)

Anonymous Coward | about 7 months ago | (#47074865)

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.

Re:Start recording her facial movements immediatel (1)

ScentCone (795499) | about 7 months ago | (#47075019)

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.

Dasher (3, Informative)

XPeter (1429763) | about 7 months ago | (#47074661)

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?

No help. (0)

Anonymous Coward | about 7 months ago | (#47074663)

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.

Re:No help. (0)

Anonymous Coward | about 7 months ago | (#47074777)

Healthcare is expensive because of high salaries of some workers. My cousin runs a nursing home. If you want to see a woman turn a scary color, ask her what she has to pay her RNs.

Unplug her. (-1, Troll)

Anonymous Coward | about 7 months ago | (#47074665)

Unplug her, wait a bit and use an ouija board

Re:Unplug her. (0)

Anonymous Coward | about 7 months ago | (#47074707)

It amazes me how little humanity some people have. Where did you grow up? Who taught you your values and, ultimately, your cynicism? That's a shitty thing to say to someone going through what is no doubt a horrible time. You're a dick.

Re:Unplug her. (1)

Dins (2538550) | about 7 months ago | (#47074847)

Oh I don't know... If my family were going through something like this, I could very well see one of us suggesting that very thing, and the rest of us laughing at it. You gotta have humor at a time like that or you'll go nuts.

Re:Unplug her. (2)

wisnoskij (1206448) | about 7 months ago | (#47074717)

Wish I could mark as both insightful, troll, and funny, all at once.

concentrate on what she needs (5, Insightful)

ei4anb (625481) | about 7 months ago | (#47074677)

You probably know this already. For the moment you should concentrate on telling her that everyone is ok and she needs to rest. Talk to her, tell her not to try to respond and not to be frustrated. Don't ask questions as that will make her more frustrated. Keep her in the conversation without expecting her to answer.

Re:concentrate on what she needs (1)

AaronLS (1804210) | about 7 months ago | (#47074957)

Excellent advice.

Re:concentrate on what she needs (3, Interesting)

daniel23 (605413) | about 7 months ago | (#47074961)

Seems like the first comment with good advice I see. And don't rush things, the brain is a complex structure with some capabilities to restructure and repair. Time, company, physiotherapy, nervous activity controls movement but movement of the limgbs induces nervous activity too and may help to regain what seems lost.
Let her see and feel and maybe even feed her baby.

Ask her if she wants to (0)

Anonymous Coward | about 7 months ago | (#47074683)

Sadly it's the most important question. Explain it to her. Then ask. Give her the dignity of a choice.

Solution (0)

Anonymous Coward | about 7 months ago | (#47074709)

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.

Re:Solution (4, Informative)

ceoyoyo (59147) | about 7 months ago | (#47074851)

Slashdot is always remarkably helpful.

There are a variety of eye trackers on the market, but those might be tiring to use. There are also some EEG devices coming out that might help you, with a bit of hacking.

Quick google search turns up:

http://mindflexgames.com/ [mindflexgames.com] - game from Mattel

http://interaxon.ca/products.h... [interaxon.ca] - input device, doesn't look like it's available yet

http://emotiv.com/store/headse... [emotiv.com] - this one looks like the most developed. A bit expensive, of course, but nothing like a clinical EEG.

http://www.transparentcorp.com... [transparentcorp.com] - Some software and another device (NeuroSky).

http://harteware.blogspot.ca/2... [blogspot.ca] - DIY

Mind reader (2)

DeFKnoL (1036636) | about 7 months ago | (#47074721)

I can't help but think that this device would come in useful: http://www.emotiv.com/apps/epo... [emotiv.com] 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"/

Re:Mind reader (1)

Twylite (234238) | about 7 months ago | (#47074949)

This. Wikipedia has a Comparison of consumer brain–computer interfaces [wikipedia.org] that covers devices from Emotiv, Neurosky and others.

Searching for Emotiv, Neurosky or "BCI" (brain-computer interface) plus keywords like "disabled" or "ALS" or "locked" produces a couple of results on improving communication with limited physical control, e.g. this [neurogadget.com] and this [singularityhub.com] . I'm sure there are plenty of others.

Another approach is software like Dasher [cam.ac.uk] , which turns gestures from various sources (including eye tracking) into text. There appears to have been some work to integrate Dasher and BCI [cam.ac.uk] .

Stem cell therapy (3, Insightful)

Jace Harker (814866) | about 7 months ago | (#47074729)

In addition to technical solutions, you might want to investigate stem cell therapy to regrow or heal nerves in the spinal column. The technology is still in the early stages but has been show to improve motor and sensory function in some cases. Here's a recent review article from PloS [plos.org] that might be a starting point for you.

Re:Stem cell therapy (5, Informative)

umafuckit (2980809) | about 7 months ago | (#47074999)

I'm a neuroscientist. As far as I know, the science is nowhere near the stage that something like this would stand reasonable odds of working for stroke damage in the brain. It's pretty much a false hope right now.

Blink Board (5, Informative)

Anonymous Coward | about 7 months ago | (#47074755)

Similar experience here just a month ago. We've had luck with a hastily printed "Blink Board". An 18"x24" laminated print (so it can be written on) with the letters of the alphabet grouped into chunks of 4-letters (ABCD EFGH etc). The family member can point to the groups, and using blinks, allow the patient to (slowly) spell out words.

On the reverse side, we printed quick "I feel" icons that we can point to (pain, itch, hot/cold, etc).

Selfish people (-1)

Anonymous Coward | about 7 months ago | (#47074761)

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.

Re:Selfish people (0)

Anonymous Coward | about 7 months ago | (#47074783)

Says the douchebag who has obviously never had children. Do you think the mother would have been able to live with herself, knowing her baby was gone and could have been saved? You obviously don't have kids, have not observed a wife/mother interacting with her children, and do not understand maternal instinct.

The usual word on cutting edge assistive devices.. (0)

Anonymous Coward | about 7 months ago | (#47074765)

- 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'..

That sounds horrible. (1)

Anonymous Coward | about 7 months ago | (#47074775)

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.

Using brain scans to communicate (1)

stevel (64802) | about 7 months ago | (#47074779)

See http://www.nature.com/news/201... [nature.com] - this article discusses using brain scans to communicate with patients originally thought to be "vegetative". http://www.nytimes.com/2014/04... [nytimes.com] is a more recent article on this topic.

Dasher? (4, Informative)

404 Clue Not Found (763556) | about 7 months ago | (#47074781)

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

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

The best hive of scum and trollery you can find (0)

Anonymous Coward | about 7 months ago | (#47074791)

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 [slashdot.org] .

Eye Tracking to communicate (1)

change02 (1020719) | about 7 months ago | (#47074801)

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... [tobii.com] http://www.eyegaze.com/eye-tra... [eyegaze.com] There may be others as well.

House did it (0)

Anonymous Coward | about 7 months ago | (#47074807)

And probably the Simpson's too.

Things to consider (1)

Anonymous Coward | about 7 months ago | (#47074835)

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!

Locked in syndrome? (-1)

Anonymous Coward | about 7 months ago | (#47074843)

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... (0, Offtopic)

grub (11606) | about 7 months ago | (#47074845)


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.

Tell her there's hope. (1)

jeffb (2.718) (1189693) | about 7 months ago | (#47074853)

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.

AC (1)

thegreatbob (693104) | about 7 months ago | (#47074857)

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.

Brain stem strokes and recovery... (5, Informative)

Anonymous Coward | about 7 months ago | (#47074867)

Although the situation in your case sounds much more severe, I had two brain-stem strokes when I was only 39 years old, both in the same day, caused by a ski-helmet that injured my neck in an otherwise perfectly safe fall (obviously I'll never wear a ski helmet again). They were pretty bad strokes, especially the second one, and treatment was not given in time to help because the idiot on the 911 line refused to believe my own diagnosis. I lost all sense of balance and Proprioception, limb coordination, fine motor skills... All were gone and the world did nothing but spin... 2 weeks later I was skiing again at around 75% capacity. Now (8 years later), I am at around 90% in most activities! and probably 95% in those involving gross motor skills rather than fine motor skills. It turns out that brain stem strokes are very common and you should be able to find great support. In most cases the brain rewires itself so quickly and so well to "work around" these types of strokes that recovery is surprisingly quick. I'm not sure that the case you describe is hopeless. And probably the worst thing to do is tell the patient it is hopeless. She needs to have hope that this could repair itself. You need to do some research, lots of it and very fast! Key to my recovery being so quick and so successful was a very strong will-power and my absolute need to get back on those ski slopes ASAP. I continually pushed far beyond the doctors recomendations in terms of physical activity, and that helped force my brain to re-wire and re-learn things quickly. I can still "feel" that the "wrong" parts of my brain or doing the work that used to be done my now-dead parts of my brain stem, but overall I guess I'm lucky. You need to get brain stem stroke specialists involved ASAP. At the time I had my stroke these were practically unknown, usually being misdiagnosed. I had to travel across the state just to find a specialist who had dealt with brain stem strokes. Not all doctors or even specialists will know what they should about this type of injury. Act fast, keep up hope, and maybe you'll find things aren't as bleak as they seem.

My condolences... and some other thoughts (2, Interesting)

Just Brew It! (636086) | about 7 months ago | (#47074869)

First of all, my condolences. That is a terrible, terrible thing to have happen. I feel especially bad for your sister-in-law, as this is pretty much a worst-case scenario -- conscious and aware, but unable to do anything. The mere thought of being in that kind of state terrifies me.

The brain is quite resilient. Your idea of some sort of brainwave device may actually have some merit; the "biofeedback" craze of the 1970s and '80s demonstrated that you can train yourself to modify your own brainwaves (and other "involuntary" bodily functions), and people have been working on brainwave-based control devices ever since. I'm not sure what's currently out there, but perhaps a creative combination of off-the-shelf sensors and some hacked-together interfaces to a laptop or Raspberry Pi type device could yield some useful results.

If you don't mind telling, what is her prognosis for recovery? Is this believed to be a temporary, or (shudder) long-term/permanent condition? This will certainly affect how you will want to proceed.

fMRI (1)

davidannis (939047) | about 7 months ago | (#47074881)

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... [medscape.com] http://www.safar.pitt.edu/arch... [pitt.edu]

No. Just no. (-1)

Anonymous Coward | about 7 months ago | (#47074891)

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.

Eye tracking (1)

shaitand (626655) | about 7 months ago | (#47074905)

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.

For go's sake (-1)

Anonymous Coward | about 7 months ago | (#47074911)

LET HER DIE. She deserves it. What kind of human beings are you? Dont you have respect? Just let her go.

Time (2)

avandesande (143899) | about 7 months ago | (#47074923)

It's hard to say what her long term prognosis is at this point- it takes weeks or months for swelling to go down and the brain to return to normal and/or rewire itself.

Healing without Cuts (1, Insightful)

InfiniteZero (587028) | about 7 months ago | (#47074929)

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

http://www.ted.com/talks/yoav_... [ted.com]

Possible treatment (1)

Anonymous Coward | about 7 months ago | (#47074933)

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.

Other options? (2)

fahrbot-bot (874524) | about 7 months ago | (#47074973)

she has virtually no control of any part of her body. She can't breathe on her own, and the only things she can move, ever so slightly, are her lips, eyelids and eyes

My condolences to your sister-in-law, her and your families, and congratulations on a healthy new baby. This is a terrible situation for everyone. I have some idea as my wife died of a brain tumor (GBM) that herniated her brain stem in January 2006, just 7 weeks after diagnosis (Remember Sue... [tumblr.com] ) Thankfully, we had that time together and were able to discuss and finalize her wishes. (We even had one last kiss and "I love you" before she, unexpectedly, became unconscious.) Have you asked her what she wants to do and if she already has a DNR, advanced health-care directive and/or health-care proxy?

I know she is only 28 years old and may, over time, possibly recover further, but she may not and may get worse (soon). Please take this time as if it were your last together, just in case. Consider and prepare for the alternatives and unexpected. I'm sorry I cannot offer more.

Constructive approaches... (5, Insightful)

dex22 (239643) | about 7 months ago | (#47074987)

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.

A recovery approach (1)

jalvarez13 (1321457) | about 7 months ago | (#47074995)

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 [amazon.com] . 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.

Early days (1)

clickclickdrone (964164) | about 7 months ago | (#47075001)

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.
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