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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?"
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).
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.
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.
My late wife had ALS. We used a Tobii assistive communication eyegaze computer. It didn't use blink, it used eye dwell time for "click".
Since blinking is tiring, perhaps this might be of more assistance.
General Relativity: Space-time tells matter where to go; Matter tells space-time what shape to be.
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.
I'm a neuroscientist. As far as I know, the science is nowhere near the stage that something like this would stand reasonable odds of working for stroke damage in the brain. It's pretty much a false hope right now.
soylentnews.org
In case OP is interested in this machine:
It's an all-in-one form factor, and in my wife's case, they provided mounting hardware for her powerchair. They also provided a rolling rack and mounting hardware for when she was in bed.
We had the 17 inch screen version, on the theory that bigger was easier to focus on. It also accepts standard USB keyboard and mouse, for configuration purposes, or if the patient has some use of hands. We also had a "big red button" connected by USB that could be used for click, if possible.
By default, it comes with only the Tobii software communications software enabled. You can purchase (relatively cheaply... $50 or less) unlock for full access to the underlying Windows system, and also the WiFi. It also came with a SIM slot, but the unlock for that was a bit more expensive.
Just as a side note, I was the guy who asked about text/voice only plans a year and a half ago, or so. It was for this computer.
General Relativity: Space-time tells matter where to go; Matter tells space-time what shape to be.