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Ask Slashdot: Communication with Locked-in syndrome patient

cablepokerface (718716) writes | about 5 months ago


cablepokerface (718716) writes "We've had a significant family catastrophe last weekend. My sister in law (my wife's sister) is 28 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 asset 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 (he's 30 weeks and it's a boy, he's doing fine) and Saturday night she had complex brain surgery which last 9 hours where they removed the blood and tumor which was pressing on the brain.

Last Sunday/Monday they slowly tried to wake her up but 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 thing she can move, ever so slightly, are her lips, eye lids 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.

I was hoping to have this Ask Slashdot accepted because the crowd on /. is a group of people who have in-dept knowledge of a wide range of topics. And 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 has experience with it?"

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Try the 'Dasher' text input method (1)

Eyeballs (64172) | about 5 months ago | (#47070065)


It says:
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