This is topic Miracle for this boy in forum Books, Films, Food and Culture at Hatrack River Forum.

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Posted by Little_Doctor (Member # 6635) on :

NEW YORK (CNN) -- It's been described as the closest thing to being buried alive -- complete paralysis of the body, except for controlled movement of the eyes.

That's how 24-year-old Erik Ramsey has spent the last eight years of his life. He suffered a brain stem stroke after a car accident when he was 16, leaving him with "locked-in" syndrome.

This condition is not the same as other forms of paralysis where you feel nothing in the affected areas. Ramsey has 100 percent sensation all over his body. An itch can become excruciating with no way to communicate that he needs it scratched. He has frequent muscle spasms as well, which can be painful.

"Even sweat rolling down his skin or something, there's nothing he can do about it," said Eddie Ramsey, 57, Erik's father. "So he feels everything in the environment, but there is really just nothing he could do about it."

Doctors told the Ramseys that their son has no chance of getting better.

"There's always hope, but a large portion of it is in the category of miracles," said Eddie Ramsey.

But new research may give Erik Ramsey the miracle he has been waiting for. Dr. Phil Kennedy, chief scientist at Neural Signals Inc., a company he founded to conduct research on the brain and communication. He came up with a revolutionary idea that he believed could turn Ramsey's thoughts into speech.

Posted by pooka (Member # 5003) on :
Wow, that's really interesting. I wonder if they would have more luck decoding something like sign language though. The trouble with consonants is you often have 4 or 5 consonants all made in the same location with subtle differences in manner. A vowel makes you shape your whole mouth.

But if he didn't know sign language to begin with, his brain would not have much territory devoted to that. Interesting stuff.
Posted by Little_Doctor (Member # 6635) on :
I hope they can come up with something. He needs something to lift his hopes.
Posted by The Pixiest (Member # 1863) on :
That's interesting technology, but even if he's able to talk he'll still be locked-in and that's not really being alive.

The boy said he wants to die. I'd want to die too. A life time of this would be the worst torture there was because there would be no hope, no release, not even death for a very long time. People get upset over gitmo but not just allow this to happen but would prosecute anyone who attempted to end it. I'd take a lifetime at gitmo over being locked-in.
Posted by Little_Doctor (Member # 6635) on :
Even if his parents wanted to comply with his wishes, there would be a lot of legality issues. I don't think anyone really has a choice here.
Posted by porcelain girl (Member # 1080) on :
I would be filled with terror 99% of the time. Even not being able to move one limb freaks me out. I would also want to die.

I don't think people with this condition should die, or should want to die-- but i absolutely would want to be euthanized.

I really hope some medical breakthroughs for conditions like this are on the way. It sounds like pure hell. No movement, no communication. Too much sensation.
Posted by Christine (Member # 8594) on :
That's nice technology, but if that were me, it wouldn't be enough of a miracle. I still wouldn't want to live like that.
Posted by pooka (Member # 5003) on :
But the other fellow managed to write a book. Could this guy not execute a living will or directive that he not receive care?

It makes me want to take a walk outside, reading about someone who cannot. I usually feel ashamed of my body, but it's actually quite serviceable.
Posted by Tara (Member # 10030) on :
It astounds me that he has been kept alive for eight years. It sounds like pure torture. Isn't there somebody who can end his life? Can't his parents make the decision or something?
Posted by Saephon (Member # 9623) on :
[Frown] Reading and thinking about what it must be like for him makes me feel strange and kind of claustrophobic. What absolute torment and Hell that must be like. I wouldn't blame him if he decided he wanted to stop living...

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