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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?"
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.
Somehow I knew that "pull the plug" was going to be the first piece of advice from the Slashdot crowd.
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.
Or considering that she has even a slight ability to answer they could ask her.
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.
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.
Wish I could mark as both insightful, troll, and funny, all at once.
Troll is not a replacement for I disagree.
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"/
They probably can't. Euthanasia is illegal in most places. If she has higher brain function that probably isn't a legal option.
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.
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.
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).
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.
- 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.
Comment removed based on user account deletion
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.
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.
Sounds painful. Give her an inert gas asphyxiation option. Explain that to her before asking if she wants to die.
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.
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?
Troll is not a replacement for I disagree.
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!
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.
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,
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.
That is her decision and not his to make. Unplugging the machines when she doesn't want them unplugged is murder.
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...
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...
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.
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.
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.
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
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.
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.
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.
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)
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.
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. . . .
Dave, way to douche it up.
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?
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.
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.
The world's burning. Moped Jesus spotted on I50. Details at 11.
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.
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.
She's not a vegetable you idiot.
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
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.
We could always ask your parents.
The world's burning. Moped Jesus spotted on I50. Details at 11.
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.
There is no XUL, only WebExtensions...
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.
How about the wishes of the fully conscious patient? Maybe that should prevent him from doing what you think is right.
If i was on her place, i would tell you: LET ME DIE BASTARD.
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.
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?
I certainly know for sure that if I were in her position, I would want the plug pulled. According to the OP, she is incapable of breathing on her own. There is no medical or ethical obligation to keep her on artificial life support against her wishes, or the wishes of her medical proxy if she is incapable of making a decision on her own. Pulling the plug is not euthanasia, it is simply allowing death to happen in a natural way. Death is as natural and normal as birth.
In this case, it appears that she has rudemintary communication ability. Agree that the sensible thing to do is ask her what she wants.
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
Really? Even on this article you couldn't set aside politics? Give it a rest once in a while.
My sympathies to cablepokerface, however things work out I hope they do so for the best - for your sister in law and the rest of your family.
Creationist Textbook Stickers Declared Unconstitutional by CowboyNeal
So, now it's sociopathy to want to end suffering, rather than force them to live in agony for our own selfish motivations?
An enigma, wrapped in a riddle, shrouded in bacon and cheese
Your medical experience must be limited to disecting frogs then.
if she has higher brain functions then she's not a vegetable. It might take a long time but there's a chance of recovery.
The brain stem takes care of physical movements and automatic movements.
She's in a stage where she's basically paralyzed from the brain down. I'm sure there's some research and tools that can help her. Probably first problem with communication.
Here's something promising:
http://www.extremetech.com/ext...
Maybe instead of an animal a robotic prosthetic arm/hand.
There's some brain mouse thing i remember seeing:
Here's a commercial one that won't break the bank: https://www.emotiv.com/epoc/
I'm sure there are others like it. Get the communication part down first, then go from there. Don't give up hope.
If she has higher brain function, and from the summary it seems she has full higher brain function, pulling the plug without asking her would be murder.
So ask. Hook her up with one of those Stephen Hawking eye-tracker things, and ask her what she wants.
Were I in her hospital gown, I know what my answer would be. The tough part would be deciding which smart-ass remark I want on my tombstone.
An enigma, wrapped in a riddle, shrouded in bacon and cheese
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.
No, it's sociopathy to tell someone looking for help for a loved one to simply let that loved one die. It shows callousness, both towards the submitter, and towards the family member. The kind of callousness I expect from Libertarian sociopaths.
The world's burning. Moped Jesus spotted on I50. Details at 11.
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.
What kind of human being are YOU, who can't realize that a communicative patient should get to decide that HERSELF?
Is it? I don't actually know, which is why I am asking the question. Can "locked in" people feel the pain associated with not breathing?
"I'm not sure I like the fugnutish tone you used in your post!" -RogL (608926)-
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.
This is exactly humanity. Who taught you to hide your head in the sand? You ever hear the expression "gallows humor"? You might not like what medical personnel say to each other.
Who taught you that life is nothing but unicorns and rainbows?
http://en.wikipedia.org/wiki/G...
If anything, you just put a human being on trial for a single sentence post. So much for your humanity. Oh wait, maybe you just pay lip service??
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.*
It was not known ahead of time that this would happen if she gave birth. You ignorant, stupid, little nigger faggot. Go hang yourself. But before that, setup an elaborate rube goldberg machine to drop the floor out and start a fire under you so you can burn alive as you hang gasping for air. Also make it a shove a razor-wire bound pine cone up your ass. And chop off your penis earlier that morning. And eat it.
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).
Comment removed based on user account deletion
Yes.
That's one thing we libertarian sociopaths are known for -- telling people hard truths they may not want to hear.
A reminder to everyone: Update your wills, living wills and medical power of attorney paperwork to cover this sort of situation.
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.
his person clearly hasn't given up on further sweetness.
Which person? cablepokerface or his sister in law?
As soon as you establish a reliable means of communication, find out what the sister in law wants to do, and help her do it.
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.
Good advice, though it sounds like she's conscious and capable of communication, so at least if she has family that will honor her wishes she's not nearly as bad off as she could have been in that regard.
--- Most topics have many sides worth arguing, allow me to take one opposite you.
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.
The tough part would be deciding which smart-ass remark I want on my tombstone.
"Don't Look Behind You"
"Never let your sense of morals prevent you from doing what is right" - Salvor Hardin
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.
Were I in her hospital gown, I know what my answer would be.
Really? Because I don't know what mine would be. And I have thought about it. Some days I feel like I could live without sight as long as I had my limbs. Other times I think I'd be OK in a wheelchair. Then there are days when my inner cheap bastard comes out and says "do whatever's cheapest!" I'm not about to judge somebody who decides either way. This is one of those "unless you've walked a mile in their shoes" sort of situations.
Hell, I don't even know what I will want for dinner tomorrow night.
You would rather torture her to keep your own moral state of denial. Must be a Christian.
http://mosaicscience.com/story/mind-readers
Uhm no I am not advocating pulling the plug I was warning against it. why don't you learn to read.
If they weren't, they'd have aborted and saved her earlier.
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!
well, there was that round of stories about increasing your IQ by applying electrical stimulation to your head
Sleep your way to a whiter smile...date a dentist!
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.
Interestingly enough, on happiness/life-satisfaction questionnaires, average scores for locked in people are actually a little higher than scores for ordinary people.
Do you think the mother would have been able to live with herself, knowing her baby was gone and could have been saved?
Yes.
You know fuck all about people. People can "live with themselves" after all sorts of shit.
It's as dumb as asking "will the child be able to live with itself knowing it killed its mother".
Watch this Heartland Institute video
Like Stephen Hawking....good think they didn't listen to you...
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
How do you know " This person clearly hasn't given up on further sweetness"? She is being artificially kept alive.
And euthanasia [for most people] is actively doing something TO kill a person, such as injecting them with a large dose of morphine [basically, the person will continue to live without machines]. That is not the case for this person, who will die in a few minutes because she is being artificially forced to breathe by a machine.
Sleep your way to a whiter smile...date a dentist!
If she has higher brain function, and from the summary it seems she has full higher brain function, pulling the plug without asking her would be murder.
So ask. Hook her up with one of those Stephen Hawking eye-tracker things, and ask her what she wants.
Frankly, I would not do that until she has learned to cope with her condition. I have a close relative who went through a debilitating stroke and honestly I was about ready to drag her in to a psych ward I was so concerned about suicide risk. Today she gets incredibly frustrated with things, but for the most part is living happily and reasonably productively for somebody who is disabled. She needs a lot of help, but I think that a decision to commit suicide would have been a rash one.
It is simply unwise to make any life decision just after going through a traumatic event. If in a year nothing has changed somebody in this condition would be in a much better place to make a thoughtful evaluation. Maybe less time is required. However, it is foolish to contemplate something like assisted suicide a short time after something like this.
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!
There seems to be a lot of people here who, by their comments, seem like a massive electrical 'stimulation' to their head might be an improvement.
He said "last Saturday", it hasn't even been a week since she had major brain surgery, and from the sounds of it she does have some minor facial control (eyes, lips), and can answer yes/no questions, it's just hard/tiring, "she" is still "in there", just not with a body that is under her control very much. I wouldn't be rushing to "pull the plug" just because she can't breathe on her own - first off it should be *her* decision as long as she is conscious and able to answer yes/no questions at least, and secondly after brain surgery she's likely to have a lot of brain swelling that could take quite some time to decrease and might lead to improvement.
Couldn't agree more.
I have a close relative with who suffered a stroke which caused aphasia. She went from only knowing maybe a few dozen words to posting on Facebook in less than a few years. While many things frustrate her to no end (those cute memes you post on social networking would benefit from screen-reader-compatible text in the post), the fact is that she is fairly functional now and able to enjoy many things in life.
Oh, another little public service message to anybody who works in a government licensing examination capacity: somebody with anomic aphasia might be perfectly capable of understanding the driving laws but be unable to complete a multiple choice exam, even if the question and answers are read aloud without modification. There really should be an accommodation where somebody is allowed to be interviewed as long as they can demonstrate the necessary proficiency - somebody with anomic aphasia can often explain things in their own words rather well.
errr...maybe you'd like to wait a bit and see if the condition is permanent? Or there are some procedures, experimental maybe that could help her?
And even if she is permanently in this state, how about Stephen Hawking? He's not as far gone but surely he must not have much quality of life? Do we kill him?
Stephen Hawking shouldn't keep an updated will, living will, or medial power of attorney document? ...because that's my advice.
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.
Like Stephen Hawking....good think they didn't listen to you...
Stephen makes his own decisions and chooses to continue at this time. Perhaps the better response would have been "determine the possible outcomes and ask whether she wants to continue with any of those, or pull the plug." Unless it is put out there as an option, some may not be able to make their will known.
The cesspool just got a check and balance.
The word "selfish" is thrown around so sloppily these days.
... sheesh.
When I hear people use that word I just hear "blah blah blah".
Wanting your spouse to live is selfish
The slashdot murder crowd is a liability to the human race.
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!
Somehow I knew that "pull the plug" was going to be the first piece of advice from the Slashdot crowd.
"Pull the plug" is only the first half. I was expecting something along the lines of "have you tried turning it off and on again?".
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.
she is incapable of breathing on her own. There is no medical or ethical obligation to keep her on artificial life support against her wishes, or the wishes of her medical proxy if she is incapable of making a decision on her own.
Totally, utterly incorrect. Even in the most liberal jurisdictions (I'm thinking Belgium and the Netherlands), pulling the plug on the life support system of a patient who has a reasonable prospect of regaining concsiousness and being able to communicate with her surroundings without being in constant agony is leaglly murder, medically a clear-cut violation of Hippocrates' oath, and ethically almost universally condemed. And in this case she is already conscious, able of rudimentary communication, and not in severe agony, so there's no wiggle-room there. At this point, you couldn't pull the plug on her even if she asked to, becuase her mind is clouded by being in the process of recovering from a severe stroke. I can't believe I'm even having this conversation; pulling the plug is so blatantly out of the question that it's slightly scandalous someone even suggested it.
The tough part would be deciding which smart-ass remark I want on my tombstone.
"It's just a flesh wound."
Holy shit, long enough summary?
This is one of those "unless you've walked a mile in their shoes" sort of situations.
Well, it's not like she's using those shoes...
I came here to say the same thing emotive eeg headset and sdk if the poster is a coder it could be used to expand her communicatory abilities immensely with the patient not having to exhaust themselves straining to simply twitch yes or no.
---Saying gnome 3 is better than windows 8 not so much a compliment as it is damning with light praise.
She went from only knowing maybe a few dozen words to posting on Facebook in less than a few years.
Wow. That's a pretty big set back. I feel so sorry for her.
Hey you morons, he simply asked about ways to communicate with her better, not a (non-sensical) philosophical discussion of what life is. If you have a suggestion on how to communicate with her in her current state, post. If not, STFU,
Yes, I have had a similar experience as the original poster.
You were saying they should consider pulling the plug if she does not regain motor control in the long term. I can read just fine.
Totally, utterly incorrect. Even in the most liberal jurisdictions (I'm thinking Belgium and the Netherlands), pulling the plug on the life support system of a patient who has a reasonable prospect of regaining concsiousness and being able to communicate with her surroundings without being in constant agony is leaglly murder.
Fortunately for a lot of suffering people, you are completely full of shit. From the American Medial Association Code of Medical Ethics:
"The principle of patient autonomy requires that physicians respect the decision to forego life-sustaining treatment of a patient who possesses decision-making capacity. Life-sustaining treatment is any treatment that serves to prolong life without reversing the underlying medical condition [...] Even if the patient is not terminally ill or permanently unconscious, it is not unethical to discontinue all means of life-sustaining medical treatment in accordance with a proper substituted judgment or best interests analysis. "
Italics mine.
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.
Forgot the link: http://www.ama-assn.org//ama/p...
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:
Like actively unplugging or turning off the machine?
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.
I believe you are mistaken. There have been serious battles surrounding the issue of whether someone was "gone" enough for it to be legal or moral to turn off the machines. If it weren't an issue he wouldn't be the one to do it. She is conscious and has means to convey her wishes. She could direct the doctors to do it herself.
Nobody should be making her medical decisions for her if she has (albeit limited) a way to communicate and a sound mind.
Somehow I knew that "pull the plug" was going to be the first piece of advice from the Slashdot crowd.
Granted, it's a half-hearted response - I'd rather have expected "Have you tried turning it off and on again?".
Ezekiel 23:20
They can make another kid, there is only one of her!!
What a sad and tragic story. I'd have saved my wife, no question or 2nd thought in that contest. I'd rather have the woman I'd known and loved for time, than a fetus I'd not met and hadn't even processed the atmosphere yetâ¦.now, he's stuck with a vegetable for a wife, and raising a kid on his own. Worst of both worlds.
Why was this such a hard choice to me? Seems a no brainer to me (no pun intended).
Light travels faster than sound. This is why some people appear bright until you hear them speak.........
This is a good point, ESPECIALLY when talking about a stroke. There is no way at this point to determine what her level of functioning will be in six months with rehabilitation. The brain is capable of learning new paths to those nerves throughout the rest of her body. She likely will never be as adept as before the stroke but she might well regain some level of control and sensation through her body.
How about "See you soon!" or "Don't think of it as dying - think of it as getting out ahead of the crowd."
Strike while the irony is hot! -- The Freethinker
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.
Agreed. I think if there is ANY chance of being able to communicate, it's a moral requirement to ask. And, while the poster states that so far, it is difficult for her to blink so far, perhaps that is something that will develop. Here is an excellent suggestion from a brilliant man who is also "locked in" but absolutely refuses to let it stop him.
Jason Becker Eye System
You mean throw my life away as well? Today? I probably wouldn't. I'm newly married and we are talking about a baby. So no, I wouldn't throw that away. A couple years back? Maybe. 20 years down the line, maybe.
That is a pretty big choice and I certainly wouldn't say someone "sucks as a human being" because of the decision they made. I would say that the people who fight to keep laws like these in place suck as human beings. I'd support some kind of mandatory delay, maybe 90 days. But it's her life and her decision. Suicide and assisted suicide should not be illegal. And I say that as someone who is otherwise very much opposed to suicide.
She went from only knowing maybe a few dozen words to posting on Facebook in less than a few years.
Wow. That's a pretty big set back. I feel so sorry for her.
Yup. She was an avid reader and had excellent verbal skills in general. It was a bit bizarre after the stroke as she would struggle with one-syllable words and then whip out an adverb like "evidently."
I don't normally reply to trolls but I must point out that you omitted the part where I also said "If there were absolutely no further room for recovery". I don't know anyone that wants to live as a complete lockin and I never suggested anyone be euthanized against their will so stop reading crap that isn't there into it.
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.
his person clearly hasn't given up on further sweetness.
Which person? cablepokerface or his sister in law?
As soon as you establish a reliable means of communication, find out what the sister in law wants to do, and help her do it.
I'm pretty sure that's exactly what the person who asked the question is trying to do.
> Were I in her hospital gown, I know what my answer would be.
You think you do. But when you get there, it's another story. The clear-cut living will says one thing, but your blinking eyes will likely say another. Your survival instinct is very primitive and very powerful, and acts nothing like your objective conscious self.
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.
For Pete's sake, use your brain. If you can *ask* the patient whether she wants to have the machines unplugged, you don't make the decision for her.
Post may contain irony: discontinue use if experiencing mood swings, nausea or elevated blood pressure.
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.
Fortunately for a lot of suffering people...
What part of "without being in constant agony" did you not understand?
Even if the patient is not terminally ill or permanently unconscious, it is not unethical to discontinue all means of life-sustaining medical treatment in accordance with a proper substituted judgment or best interests analysis.
Nice attempt at ripping a quote out of context, but you need more contextomy practice; you forgot to edit out the "in accordance with a proper substituted judgment or best interests analysis" part, which severely undermines your standpoint. You'd have a stronger case if you could show me a precedent where someone who has a reasonable prospect of regaining concsiousness and being able to communicate with her surroundings without being in constant agony was legally euthanased.
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.
If she has higher brain function, and from the summary it seems she has full higher brain function, pulling the plug without asking her would be murder.
So ask. Hook her up with one of those Stephen Hawking eye-tracker things, and ask her what she wants.
Were I in her hospital gown, I know what my answer would be. The tough part would be deciding which smart-ass remark I want on my tombstone.
Since my imagination of your life justifies this question: CanHasDIY, why don't you just kill yourself already?
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/
What part of "without being in constant agony" did you not understand?
Being in "constant agony" is nowhere specified in the ethical guidelines as a defining criterion for a best-interests analysis. You're simply pulling that out of your ass. And you continue to conflate withdrawal of life-sustaining treatment with euthanasia. They are two completely different things.
The basic standard, clearly articulated, is that the preferences of the patient are paramount. It's the patient who gets to decide what his or her level of suffering is, and whether or not it is reasonable to continue life-sustaining medical intervention. And yes, there is substantial precedent for this.
It continues to amaze me how human beings refuse to view death as part of the natural process of life, much to their own and society's detriment.
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.
That's right, a potato is a tuber.
No, because euthanasia is illegal in Canada and the US, but people are regularly unplugged from machines that are the sole reason they are alive.
Stopping doing something is not the same as doing something
Sleep your way to a whiter smile...date a dentist!
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.
I don't know squat, and neither do you, except what's been reported, which is that the person asking for help hasn't given up. As her husband, it's really his decision. You really, really don't get a say in it. Your pet theories about euthanasia aren't relevant to the discussion. If she'd put in a DNR order, she'd be dead now, and I'm sure this was discussed—someone with a condition like that, making decisions like that, would have been asked.
A massive medical setback like this can be severely depressing, so simply asking, right now, at this awful time, "do you want to live or die" is not necessarily going to get the answer from her that she'd give in a week's time, after taking stock of the situation. Even if she wanted to die right now, they'd wait a bit to give her a chance to change her mind. Why the rush? You're letting your ideology get in the way of real life. Being on a respirator yet still conscious may or may not be worse than being dead. None of us here in this discussion know.
@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.
Why is this marked as flamebait?
It's the first thing I thought of. If I was in that situation, unless I could become the next Ship Who Sings, then I'd rather die with some measure of dignity than be stuck in that kind of horrible state.
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.
she is conscious and can communicate, so that's her decision - and a pretty stupid suggestion for someone else to "consider"
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...
If she can't tell you she doesn't want it unplugged then it isn't. This is why living wills and DNRs exist.
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.
Being in "constant agony" is nowhere specified in the ethical guidelines as a defining criterion for a best-interests analysis. You're simply pulling that out of your ass.
Nope, I'm giving that as an (admittedly coarse and imperfect) definition for the very difficult concept "quality-of-life" (or rather, lack thereof). You might want to read up on that. It is one of the concepts on which the concept "medical futility" is based.
And you continue to conflate withdrawal of life-sustaining treatment with euthanasia. They are two completely different things.
There is a difference, but the line is already blurry from a legal point of view, and nearly nonexistent from an ethical point of view. You might be conflating ethics with law.
It's the patient who gets to decide what his or her level of suffering is, and whether or not it is reasonable to continue life-sustaining medical intervention.
Only within certain limits; these absolutes you seem to be reasoning in don't play well with reality. To give a more extreme example, if you are involved in an accident in which you lose your genitals, and end up in intensive care for a short while, with little acute pain and a prognosis of full recovery, you don't get to decide to die because you dread staying a virgin forever.
And yes, there is substantial precedent for this.
Wrong link? This is an article on "medical futility", and it does refer to "quality-of-life", as I asserted. It contains one precedent, which is largely in agreement with the conditions I had in mind. Admittedly, those conditions are a bit more elaborate than what I wrote in my post; I'm not here to write whole essays on "quality-of-life" and "medical futility", and you'll have to assume good faith. My main point is that there are narrow legal and ethical limits within which a patient is allowed to choose to die, and that the case in TFA is outside them for the time being.
It continues to amaze me how human beings refuse to view death as part of the natural process of life, much to their own and society's detriment.
You're setting up a big strawman here. Would it not be to society's detriment for the child in TFA to grow up without mother, or for the poster and all his family to lose a beloved one at the tender age of 28, hastily unplugged before anyone could know how well she would recover (in that respects, I advise you to read some of the posts further down this discussion, including my own). What if it would be your mother or sister, and I were the dick shouting "unplug her!" while you'd rather would like to first see her stabilize and get a solid prognosis on her recovery? Also, if a very poor person catches bacterial bronchitis and obtains antibiotics through medicaid, would you also say that's to "society's detriment" and they should "learn to view death as part of the natural process of life"? The fact that society steps up for those in trouble is what differentiates us from solitary animals. It only becomes a problem when the intervention is both futile and unwanted, which is why we have these laws and ethical guidelines. In other words, yes death is part of life and shouldn't be averted if there's no good reason to do so, but "good reason" is hard to define and subjective, and laws and ethical guidelines by nature play it safe as to not offend anyone. I think the current laws in the liberal jurisdictions I was talking about strike a good balance; what you're proposing could too easily lead to excesses and injustices. As "parts of life" go, death is a pretty irrevocable one... Here's some further food for thought. I can't say I agree with every last letter of it, but it's a good though-provoking read.
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.
Some (most?) of the world's major religions, and most legal jurisdictions, emphatically do _not_ provide for a patient, even terminally ill, to make that decision and to action it (themselves or by proxy). That's a lot of humans you are condemning (ok, some of them are politicians and religious leaders who won;t change rules to match what is now the majority viewpoint, but still).
Some people think that, for instance, those who work for Dignitas (http://en.wikipedia.org/wiki/Dignitas_(assisted_dying_organisation)) are horrible people, precisely because they work to enable the patient to "get to decide that herself".
Maybe you are thinking it's ok the other way round, i.e. the patient can decide to live - but it's one and the same decision (keep me alive or let me die), and in most places it's not the patient's decision to make.
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.
Why didn't they dump the kid and save her for God's sake???
They can make another kid, there is only one of her!!
The child has already been delivered by c-section. It's right there in the summary! Or do you believe that there's some way to retroactively sacrifice the baby to fix the unrelated brain tumour?
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.
You are referring to cortical plasticity, a well-documented effect. Unfortunately, locked-in patients have a lesion to their brainstem (typically the pons, which is why she can still move some of the muscles of her head but not her facial expression muscles, tongue, jaw, vocal cords, etc). You don't really have much "alternative routing" in the brainstem. Of course, there is no need to rush: let the swelling go down and ensure that this is indeed an infarct rather than simply being "bruised neurons". But, if not...
Crappy analogy: let's say your Linux box got disk corruption that killed your sed binary. You could probably redo most of your shell scripts to use alternative, similar utilities like perl, with effort. That's like cortical plasticity after a stroke to the cerebral cortex. Now, imagine the disk corruption damaged the kernel's virtual memory management code instead. What can you do for alternatives? That's like brainstem damage: it's critical, low-level stuff that doesn't have much semblance of redundant capacity.
Some people have survived this shattering disability by accepting it with superhuman grace (truly dead axons in the pons will never heal, and so there is no long-term improvement from that). I can't imagine a worse horror, personally, and I would desperately wish to be allowed to die.
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.
I certainly know for sure that if I were in her position, I would want the plug pulled.
Do any of you people grasp at all the fact that she may not be permanantly stuck in this state?
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.
Do any of you people grasp at all the fact that she may not be permanantly stuck in this state?
This is a totally fair point. Another totally fair point is that nobody should be diagnosing anybody over the internet. So allow me to clarify: instead of "her position" (nobody here knows exactly what that is), I would substitute "to have irreversible brain stem damage that left me in her position". That makes it rather a lot more hypothetical.
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.
within certain limits; these absolutes you seem to be reasoning in don't play well with reality. To give a more extreme example, if you are involved in an accident in which you lose your genitals, and end up in intensive care for a short while, with little acute pain and a prognosis of full recovery, you don't get to decide to die because you dread staying a virgin forever.
Last I checked, losing your balls doesn't come with being unable to breathe on your own. You're accusing me of setting up strawmen?
Fuck you and goodbye.
What kind of nonsense is this?
The original article makes it absolutely clear that she is able to communicate. The only person who should decide whether she will live like this or be unplugged is the woman herself.
That was "should". In the real world, the costs of keeping her alive matter. But suggesting to unplug a human being who can think and communicate is in no way different from advocating murder.
Hale and happy as I am today, I think that I would like to be unplugged in her situation. But I may feel very different if I actually were in the state she's in.
So, try to help the original poster and his sister with their predicament, and please keep your sociopathic tenancies to yourself.
No good deed goes unpunished...
@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.
Since Abraham and Isaac, the Lord no longer asks for human sacrifices, so a goat sacrifice will do. In fact the great civilizations of Central and South America were at one time the most advanced in the world in such things as math and computing astronomical orbits, the Lord propelled them to such heights, but they could never get over, progress past the stage of human sacrifices. That is not the ways of the Lord. The Lord asks for the sacrifice to see how people react internally, to see what they think, but the Lord told Abraham to stop, sacrifice a ram instead. The Lord can read your thinking, and it is the thinking that matters more than what actually happens. Those who stray far from the ways of the Lord, in thinking, get punished. Even if they are Jews, with whom the Lord made a covenant, if they stop believing in the Lord internally, which might be forgivable, but when they start thinking and behaving in ways not in accordance with the ways of the Lord, they will be punished. David taking Bathsheba, the wife of Uriah the Hittite, was not in accordance with the ways of the Lord. Thou shalt not covent thy neighbors wife. For which he was punished, as his first born son from her had to die. But David got up from his hunger strike as soon as it happened, and showered, and went to lay with Bathsheba. This pleased the Lord.
I think in such situation religion helps. In a sense the Lord made her be in this state, to see how she reacts, how she thinks. Maybe she knows what kind of incorrect thoughts she thought in the past that would trigger this. The Quran, in which the Lord speaks in the plural, as we, is full of lines such as 41:51, one of the translations being: "When We show favour unto man, he withdraweth and turneth aside(from his Lord), but when ill toucheth him then he aboundeth in prayer." The Lord knows what you think, and he is, or more like "they are" reading her thoughts in her present state.
By the way Mohamed was the last prophet of the Lord, because even "they" are not omnipotent, they pretend to be to help humans through this pretense, but prophecies take way too much effort to fulfill, and the practice has been abandoned starting with Mohamed. Though "they" can predict the future way beyond our abilities, they, or he, can't predict it completely, and prophecies since Mohamed should be taken as guidelines, with the understanding that life has to adapt to new circumstances and some prophecies will be abandoned because it's not worth fulfilling them. Nobody knows the distant future in exact detail, though "they" are pretty good at it. "They" are of this galaxy. "Their" biggest fear is an intergalactic invasion by an unbenign, unkind intellect, or kind intellect slave to unkind beings, which is why they would like humans and all other lifeforms in this galaxy to be well versed in the affairs of warfare and defense. Such is a thing is increasingly difficult in face of nuclear weapons, in face of artificial intelligence, but even with computing new ways of practice arise through lots of virtual reality wargames, and even real thing viruses and virus scanners, things that could come in handy knowing about under an invasion, if the invaders run computer systems. The decrease and simplification of computing technology to a 1 menu 2 item feature list and one button thing (inside a 5 GB piece of software) as a solution to security and computer warfare issues is not welcome by "they." It is a way to stray from the ways of the Lord. Things are starting to turn into very Mac-like appliances - back in the old days Mac's came with a single mouse button. That's not what the Lord wants, the Lord wants skill, variety, dynamics, even if it's too hard to fight, drop the footprint if you need more security, to DOS-like hardiness from Windows 8.1-like bloatness, and maintain the richness and features and possibilities, and fight the fights you have to fight, be good at defense, strategy, attack. In a sense you could say terrorist attacks are caused by Allah, to create skill, strategy and tactics in dealing w
I came to post something along the same lines as well, it's a shame to have to scroll so far down for a decent answer to the actual question. I'm not sure if this is the same technology, but I've seen something like this demonstrated: http://www.gizmag.com/ibrain-stephen-hawking-communicate-brainwaves/23182/
What I saw (a few years back) looked like a Sharper Image gadget that wrapped around the base of the neck that intercepted speech on the way from the brain, and without the person having to say a thing, could play the words aloud over a speaker. I can't find that exact thing for the life of me, but this technology may be related: http://www.ncbi.nlm.nih.gov/pubmed/21750369
In the case that she is unable to stimulate whatever nerves allow these systems to work, I would look into any sort of interaction she can do which is not tiring, as any movement that could suffice simply to correlate 0 or 1 could allow her to interact with an electronic interface, similar to Stephen Hawking's screen but possibly simplified further, even if it's simply "next letter" or "this letter" she would be able to start words from an alphabetical listing, and like auto-complete on a smartphone it may not take too long to narrow down the word she wants to use.
This must be devastating for your whole family, but her retention of higher brain function is a tremendous boon and with time she may be able to interact with you somewhat normally once again. I hope for the best for you.
I'd rather have the woman I'd known and loved for time, than a fetus I'd not met and hadn't even processed the atmosphere yetæ.now, he's stuck with a vegetable for a wife, and raising a kid on his own.
So the value of a human life is determined by your attachment the person? OR your enjoyment of the person? That seems like both an arbitrary and egotistical standard.
Why didn't they dump the kid and save her for God's sake??? . . . Why was this such a hard choice to me? [sic] Seems a no brainer to me (no pun intended).
For one thing, the neurologists didn't seem to think such a tragedy was likely.
But more to the point, your comment (and GP's) seem to imply that the mother wasn't (or shouldn't have been) the one making the decision, but that she either was or ought to have been entirely passive in this process.
So going back to the first point, maybe she was willing to risk her health to make sure her child could grow up.
Mod points: Guaranteed to remove your sense of humor.
Side effects may include gullibility and temporary retardation
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!
whoosh.
actually doing something like this, particularly one somebody with a very new condition, would be completely inappropriate, as well as making a 'quality of life' decision, as it is probably too soon to tell how permanent her condition is.
Sleep your way to a whiter smile...date a dentist!
If she can't tell you she doesn't want it unplugged then it isn't.
She is fully conscious, so she can tell him. "Telling" doesn't require verbal communication ability.
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
" telling people ignorance based opinions they do not want to hear."
FIFY, jackass.
The Kruger Dunning explains most post on
"So the value of a human life is determined by your attachment the person? OR your enjoyment of the person? That seems like both an arbitrary and egotistical standard."
no, it's necessary. Can you image if you cared about some random person across the world to the same degree as you loved one? You would go mad.
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.
I didn't mean a ritual sacrifice. I was simply pointing out how ridiculously morbid the discussion on this is. Someone posts looking for advice for a loved one in distress and, instead of a helpful discussion of the state of the art in brain/machine interface and assistive technology, scores of posters descend with ghoulish suggestions regarding her and a perfectly healthy baby who is not the source of the problem (I suppose we can chalk that one up to complete reading mis-comprehension).
Religion or philosophy may help her in the long run (or not, every person is different), but they hardly need to turn to Slashdot for that. If the family is at all religious, I'm sure they've already received spiritual advice from whatever pastor/priest/cleric/guru they already have.
That makes it rather a lot more hypothetical.
And even less helpful. This is an "ask Slashdot" article. A question has been asked by someone in real need. I wish I had a real answer, but I really am not up on the state of the art in the field. I do know a counter-productive non-answer when I see one and, in the described situation, posts like yours are exactly such.
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.
In dire straits religion, and in that, monotheistic religion, can pull your ass out of trouble. In a sense religion is a patchwork of the weakness of human psyche. There is this picture of who they call Prometheus, as a pilot, http://1.bp.blogspot.com/-XBXL..., alone, under infection, with his face getting chewed off, just like the alien's female's face, http://2.bp.blogspot.com/-Jxym... , but he is hanging in there, and the only way he can do that is if he's a monotheist, with a personal God, not just a nirvana impersonless Universe that awaits him to become one with it. Whether there is any tangible reality to religion as interpreted to the letter, well, time and time again people come and go who point out inconsistencies, faults and mistakes in religions, also corruption and abuses of power by the clergy, and religion may not have anything to do with reality at all, but it has a tremendous value as an effect on the human psyche, as a patchwork to the defects of almost any intelligent psyche. Which is why these nonomnipotent beings of the Milky Way galaxy, managing other beings, promote religion to humans, and themselves pretend to be omnipotent sometimes. By the way they are seldom active, but in some cases, like people dwelling in the dire deserts, or the Jews acting in the ways of the Lord under Egyptian captivity, they will do things, including splitting of the Red Sea, which goes far beyond mere hallucinations, that almost every other thing can be ascribed to, such as Moses receiving the 10 commandments, seeing a burning bush - he might have been just hallucinating. Btw 9/11 was mostly Muslims against Jews, the Lord's people against the Lord's people, and there must have been some things going on not in accordance with the ways of the Lord in those buildings. Perhaps people lost faith, they've stopped being true believers, and that's how they wandered off the path. There is this saying that the Jews control the world, and they do a pretty good job at it, much better than the Romans did, or would have, but sometimes they make mistakes, especially when they forget about their religion. Again, religion may not have anything to do with reality at all, when it comes to interpreting it by the letter, such as Noah's Ark issues, but it has a tremendous value as an effect on the human psyche. This Slashdot post asked for what can they do under such circumstances, and I wrote what I thought could help.
Btw, the brits at Trafalgar saved every single Spanish soldier from the water, from the sunken ships (no longer possible to practice with the advent of submarines and obsolescence of battleships), and treated them well. That is in accordance with the ways of the Lord, unlike the stuff that went down http://en.wikipedia.org/wiki/G...örgy_Dózsa rebellions, and during http://en.wikipedia.org/wiki/J... during the 100 year war. Throughout history and even to these days the treatment of http://en.wikipedia.org/wiki/P... is often not in accordance with the ways of the Lord. In particular, http://en.wikipedia.org/wiki/A... shows some exceptional deathrates:
German POWs in British hands 0.03%[90]
German POWs in American hands 0.15%[90]
German POWs in French hands 2.58%[90]
Japanese POWs held by U.S.: relatively low, mainly suicides according to James D. Morrow.
Life is negative entropy. The appearance of a tendency for the creation and sustaining of order, in a disordertending environment.
Though sometimes it gets complicated, like in case of kamikaze's.
It's often all just a matter of money. Often people will be kept artificially on the machines until the insurance is willing to pay, and as soon as it runs out, they are "relocated" and such relocation involves getting permanently unplugged too, if nothing else, unplugged in a mild sense from the superhigh-quality support to a mediocre but "acceptable" support, with unfortunate consequences when such "acceptable" support is not enough, especially when the "superhigh-quality support" was barely letting the person hang in there. Having no insurance qualifies you for the mediocre support very fast, and sometimes that's what you want for yourself, lower cost to you or lower burden to society.
Religion is very cheap, and its quality of support value is very high.
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.
Just because she's conscious and has a means to convey her wishes, it does not mean that other people around her will respect her wishes. For instance, they could declare her mentally challenged, unable to make correct decisions under the duress and stress of the situation, and she might be overly emotional(like all women are), and the community might make a decision for her different than what she would make for herself. Also, it's unlikely that she'd opt for suicide (unless she's Korean or Japanese), as women are the survivors of the species and males are the discardable ones, http://en.wikipedia.org/wiki/G... , so the issue of the community wanting to keep her alive and her wanting to die instead should not arise. The issue of her wanting to live and the community wanting her to die is a weird one, as she's not a criminal, and communities spend a shitload of money on sustaining criminals, and only the gravest criminals will be put to death by the community against the individual's wish to live, and if they run out of money, they should take it from the non-selfsustaining private profit prisons that are government funded, and put it to supporting people like her. Although most of the slashdot folks here seem unversed in the topics of Borg-like brain-computer implants and interfaces http://img3.wikia.nocookie.net... (as none of us really know how the brain works, or even what sleep is), we deteriorate into this ethical discussion of cost to society and worth to live. And it's a valid discussion, as healthy prison inmates with some bogus charges of drug abuse, or even framed people for murders (Shawshank redemption is a movie about the wrong guy going to jail, and truck drivers are the most frequent serial killers, not because they have higher tendencies, but because they are so easy to frame - anyone on the shitlist of the powers to be will be herded toward a truckdriver job, given a route they have no control over, and the morgues are full of dead bodies of people with no relatives looking for them who can be used as murder framing dummies, and it's easy to frame anyone into being a murderer, especially if they are also willing to read some murder-mystery novels like "the perfect crime" or Agatha Christie type stuff, stuff that the general population loves to read anyway) might have a more valid reason to be kept alive than someone who lost brain function to the point of unable to control her lung, if we'd have to choose because of cost. But it shouldn't be a matter of cost considering the wealth of the society we live in. I'd be willing to skip eating every other day and instead give the money to supporting both the criminal and the sick on life support, and of the two the criminal is the cheaper to support, but has less value as a moral human being in being supported compared to a law abiding sick patient without lung function. By the way food is so cheap, it wouldn't be that much money. Especially the food I eat.
Of course Borg-like implants that can read her thoughts would have a much higher value. However, I don't know about brain researchers and cybernetic implant researchers, but I'd be unwilling to work on such implants, to create such implants, in the present state of general human affairs, as the powers that be might be using them to read the thoughts of the general population. The freedom of speech is guaranteed by the first amendment, but under severe attack these days, like all the other amendments, by the royalist/nobility forces, but the freedom of thought is guaranteed by the status quo until mind reading things become available, so that unspoken thought can be recorded, as it needs to be, before it can be criminalized. Only the Lord Almighty and his angels have the technology to read everybody's thoughts, and that should be sufficient, we can leave it up to them to make the decisions, including mindreading and communication decisions. If they really want to they can make her do telepathy with someone else, but most likely they don't want to. And that's that. Quod est.
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.
You make a fair point, but there is--I think--a difference between the subjective affection we have for someone we love, which causes us to want to treat them well, and the objective value that ethics demands we extend to individuals.
It may be perfectly natural for me not to give anything to people in another country (because I don't care about them the way I care about my family), but that natural disparity in my affection for my fellow countrymen and for the foreigners doesn't mean that if we go to war I can commit war crimes against the people of that country.
The objective value imposed by ethics should be operative and overriding when making decisions about who lives and dies, because these choices are not just personal choices that primarily affect the person making the decision. If I ever desperately need medical attention and the doctor in triage has to choose who to treat and who to let die, I hope he has a more meaningful standard than whom he personally happens to like more.
And just to be clear, the criticism shouldn't be taken to say that I think it would have been wrong to perform the brain surgery even at risk to the child's life. It was simply the GGP's glib resolution of the question entirely in terms of the family members' affections (not even of the mother's!), as though those alone were were the only consideration and were of themselves sufficient to justify the conclusion.
Mod points: Guaranteed to remove your sense of humor.
Side effects may include gullibility and temporary retardation
No. She's lying in a bed, with a machine that breathes for her. She's obviously Terri Shiavo. Kill her immediately so we can show how compassionate and forward thinking we are.
I don't normally reply to trolls but I must point out that you omitted the part where I also said "If there were absolutely no further room for recovery".
In other words, not regaining motor control in the long term. I don't really see how that changes anything. Again, I can read just fine.
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
This is an "ask Slashdot" article. A question has been asked by someone in real need. I wish I had a real answer, but I really am not up on the state of the art in the field. I do know a counter-productive non-answer when I see one and, in the described situation, posts like yours are exactly such.
We'll have to disagree on that one. Anybody trying to respond compassionately and effectively to the situation described should be considering the very real possibility that the condition is mostly irreversible. Of course it's going to come up if you choose to discuss it on a public forum, and there is nothing wrong with that. Quite the contrary: the fact that people so commonly respond with venom and denial to discussion of end-of-life planning is a massive problem, and contributes to unimaginable suffering for many, many people.
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
"Ask Slashdot" is supposed to be asking the Slashdot community a specific question since we're supposed to be a reasonably knowledgeable community. Somehow it always seems to devolve into these tangents instead of being useful. It's especially bad when the person asking the question is facing personal tragedy and all they get are insensitive, unhelpful and morbid suggestions.
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?
Wow. Just wow.
You're easily wowed. You're just easily wowed.
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.
Er, what happened to "just wow?" Just indeed; apparently you don't know what "just" means, else you wouldn't have written all this other crap that followed — you just wanted to use an overwrought, overused Web 2.0 meme, despite your lack of sincerity in invoking it — had you been sincere, you'd have written "just wow" and just been done with it.
For your next "insight," perhaps start with the equally-tired "This."
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.
"Just because she's conscious and has a means to convey her wishes, it does not mean that other people around her will respect her wishes. For instance, they could declare her mentally challenged, unable to make correct decisions under the duress and stress of the situation, and she might be overly emotional(like all women are), and the community might make a decision for her different than what she would make for herself."
If she's conscious and has a means to convey her wishes no doctor will ever declare her braindead. Having someone declared mentally challenged and having legal power of attorney doesn't empower you to make the decision to have the plug pulled without a doctor deciding the patient is gone! If she made the call herself it would be doctor assisted suicide, if someone had her declared incompetent it would be doctor assisted murder. In either case THE DOCTOR would be going to prison as well.
I believe I saw something a few years back where stem cells injections were helping patients like these restore function.
There is nobody doing anything that they could stop doing. If all the humans drop their arms to their sides and walk away that machine stays on autopilot.
The machine is on. If you turned it off, you WOULD be doing something, turning off the machine. Lifting your hand is doing something. Reaching it out is doing something. Pulling a plug/hitting and off switch. That is doing something.
If a human were performing CPR they could just stop, that would be stopping doing something. If no machine were on, they could not hook one up in the first place. That wouldn't be stopping but it would be doing nothing.
Someone has to actively do something to stop the machine from continuing to keep her alive. That someone is taking a deliberate action to bring about her life. Just the same as if you were in a cave and a ventilation system was circulating fresh air down to you and someone (who knew this) pressed the button to turn off the fans.
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.
within certain limits; these absolutes you seem to be reasoning in don't play well with reality. To give a more extreme example, if you are involved in an accident in which you lose your genitals, and end up in intensive care for a short while, with little acute pain and a prognosis of full recovery, you don't get to decide to die because you dread staying a virgin forever.
Last I checked, losing your balls doesn't come with being unable to breathe on your own.
I did mention you ending up in intensive care for a while. What did you think I meant by that? I thought it was pretty clear I meant you had life-threatening injuries, but the genital one would be the only permanent one. Pretty clear to people using common sense, that is.
My point was: during the timespan you're in intensive care, you'll almost by definition die if they don't support your life, so they can let you die just by withholding treatment. By this, I wanted to illustrate that withholding treatment is far from the only criterion to make it legal, as you asserted.
You're accusing me of setting up strawmen? Fuck you and goodbye.
Oh, so it's only cool if you're the one doing it to other people, and else you resort to cursing?
Interesting, if so. The CNS has oligodendrocytes as supporting/myelinating cells, while the peripheral nervous system has Schwann cells for this. Schwann cells are instrumental in helping to repair breaks in axons; their absence in the CNS is one reason the CNS doesn't recover (oligodendrocytes have no known equivalent repair functionality).
However, dead is dead (and tautologies are tautologies). It's pretty damn hard to conceive of a system regenerating lesions that "severed the connection" in the pons by causing death in the axons/glial cells. These are incredibly long axons for neurons that were connected early in the embryo and lengthened as the embryo grew. Regrowing these connections seems like trying to connect a wire from an individual apartment in new york to an individual apartment in LA by randomly heading out from one end and dragging a spool of wire behind you.
I hope someone figures out how to do it, though, and that I just have a failure of imagination for the solution.
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/
ROTFLMFAO
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..