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Locked-In Syndrome
October 8, 2008 12:00 AM   Subscribe

The Unspeakable Odyssey of the Motionless Boy. "How much of our humanity are we prepared to cede to machines? This is a dilemma of the future, but it's not much of a concern for Erik Ramsey. Erik can't move. He can't blink his eyes. And he hasn't said a word since 1999. But now, thanks to an electrode that was surgically implanted in his brain and linked to a computer, his nine-year silence is about to end." [Via]
posted by homunculus (32 comments total) 19 users marked this as a favorite

If there is a hell on Earth, its name must be locked-in syndrome.
posted by gottabefunky at 12:22 AM on October 8, 2008

This is the same thing as WW1 soldier in Metallica's "One" video, isn't it? Regardless, this seems like great research with already promising results. For the sake of Erik and people like him, more research faster, please!!

And gottabefunky: agreed, 100%.
posted by barnacles at 12:31 AM on October 8, 2008

Oh my God.. I can't imagine anything more horrifying than that. I'd have been screaming "Kill me please" for nine years... jesus.
posted by dirtynumbangelboy at 12:43 AM on October 8, 2008

That was powerful.
posted by iamkimiam at 1:03 AM on October 8, 2008

So terrible, heart-wrenching. Just watched The Diving Bell and the Butterfly last night, too.

Hope this technology progresses quickly.
posted by shucksitsjeremy at 1:25 AM on October 8, 2008

whoa that sucks,
wishen that kid well, He deserves a good life.
posted by lacol at 2:19 AM on October 8, 2008

When they start installing these in newborns so they grow up with them, you'll shit bricks.
posted by TheOnlyCoolTim at 2:47 AM on October 8, 2008

That certainly puts ordinary woes into perspective. I wonder if his mind is still fully functional, but something is lost when he tries to spell... that is, his thoughts are still perfectly coherent, but he can't spell them out. As if it isn't awful enough to only be able to communicate with his eyes, now he can't even do that.

This is genuinely terrifying.
posted by twirlypen at 3:39 AM on October 8, 2008 [1 favorite]

"Kennedy is trying to help Erik become the first human being ever to have his thoughts translated directly into speech."


"A few weeks later, neurosurgeons working with Kennedy opened Erik's skull and threaded a tiny glass cone containing three long, hair-thin Teflon-coated gold wires into exactly that part of his brain."


"Within a few months, Kennedy had Erik producing short words like dada and mama"


"Kennedy promises him that if he can do one more round of testing, he'll play the Headbangers Ball CD, one of Erik's favorites. This seems to reenergize him."

God, so utterly heart-rending.

"The goal: full sentences within five years."


This next paragraph made me burst into tears:

"In 1966, a thirty-two-year-old woman named Julia Tavalaro became locked-in after a brain hemorrhage and was sent to Goldwater Memorial Hospital on Roosevelt Island, New York, where the staff took to calling her "the vegetable." It wasn't until six years later that a family member noticed Tavalaro trying to smile after she heard a dirty joke. She was immediately taught to communicate with eye blinks and became a poet and author. She died in 2003 at the age of sixty-eight, having never spoken for thirty-seven years."

Man, neuroscience rocks. I wish more doctors were capable of empathy and caring as this Dr. Philip Kennedy. I love this man for what he's doing.

Awesome and humbling story. My prayers for Erik and for everything good in his relationship with Dr. Kennedy. Major respect for Erik's loving family.
posted by nickyskye at 4:27 AM on October 8, 2008 [4 favorites]

This is the same thing as WW1 soldier in Metallica's "One" video, isn't it?

Johnny Got His Gun.

Short of dead, it's hard to think of a tougher break – and even that one's a toss up. It's situations like this that compel me to think that sometimes it should be totally legal and fine to say that you've had enough. Tough kid.
posted by mandal at 4:44 AM on October 8, 2008

"A few weeks later, neurosurgeons working with Kennedy opened Erik's skull and threaded a tiny glass cone containing three long, hair-thin Teflon-coated gold wires into exactly that part of his brain."

I wonder what the chances are that the first message he'll send will be on the order of "OW!"
posted by kittyprecious at 5:19 AM on October 8, 2008

The article seems to imply that locked-in syndrome is relatively uncommon, but the article does mention in passing that ALS sufferers end up in the same conditon; according to the ALS Association that disease affects up to 30,000 people in the US alone at any given time. An old friend of mine has an advanced case of the disease and in less than 3 years went from being an active husband and father to leading an existence much like that described for Erik. He is bedridden and mostly watches the Sci-Fi channel all day long (ever since I met him in junior high he like to read science fiction); he moves the tip of one finger enough to operate a voice synthesizer much like that used by fellow ALS patient Stephen Hawking, although my friend's has a female voice which is a little strange coming from a tall guy with a mustache. As described in the Hawking link, it is a painfully slow way to communicate and the effort required to do it tires him out within an hour. Unfortunately the type of research described here will not help people like him; although there is certainly a lot of research into ALS as well. Mother nature can certainly be a bitch at times.
posted by TedW at 5:23 AM on October 8, 2008 [2 favorites]

I wonder what the chances are that the first message he'll send will be on the order of "OW!"

The brain itself has no pain sensors and these sorts of procedures are usually done through a small enough incision that local anesthetics are enough to completely numb the area, so it should not have been painful to him.
posted by TedW at 5:26 AM on October 8, 2008

God, how horrifying.

Anyone who is interested in this should check out The Diving Bell and the Butterfly, which was written (and the movie filmed in the POV of) someone with Locked-In Syndrome. It's incredibly powerful.
posted by Solon and Thanks at 5:47 AM on October 8, 2008 [1 favorite]

written by someone with Locked-In Syndrome. He had an assistant read out every letter of the alphabet in order of commonality and would blink for the desired one. And that's how he wrote a book.
posted by Solon and Thanks at 5:48 AM on October 8, 2008 [3 favorites]

Good luck Erik, you deserve all the relief you desire.
posted by Senator at 6:01 AM on October 8, 2008

That's terrifying. If my child were Erik, I don't know if I would have the strength that his parents have shown. It's amazing, depressing and absolutely terrifying.
posted by mitzyjalapeno at 7:35 AM on October 8, 2008

brain piercing.
posted by mwhybark at 8:04 AM on October 8, 2008

Locked-in syndrome is a nightmare, on the order of being buried alive. What an incredible blessing for Erik to have such a dedicated family, not to mention the amazing work of Dr. Kennedy.
posted by notashroom at 9:45 AM on October 8, 2008

Erik's story sort of reminds me of a TV show I saw once - this man was brought to the ER and he was completely paralyzed; the only thing he could move was his eyes (he could blink, too). His wife, who was by his side, said he'd fallen down the stairs and must've broken his neck. She kept begging the doctors to "pull the plug," saying husband wouldn't want to live this way. But hubby didn't have a Living Will or anything, so he was kept on life support. Later in the ep they performed experimental surgery and put tiny electrodes in different parts of his brain. When he recovered, they were able to project a virtual keyboard on a TV screen, and he could "type" by focusing on each key. The first message he typed? ""
posted by Oriole Adams at 10:00 AM on October 8, 2008 [1 favorite]

I hope to God that if something like that ever happens to me, that someone who loves me will be strong enough to hold a pillow over my face.

I don't particularly care about the length of my life, I care more about the length where there is a reasonable quality maintained.

This appears to be 0 quality of life.
posted by Ynoxas at 10:22 AM on October 8, 2008

Surprised no one else mentioned this:

And because he has no way of expressing pain or discomfort, all this care must be administered as gingerly as if he were a newborn. When Erik's fingernails have to be trimmed, Eddie uses his teeth.

posted by brassafrax at 12:12 PM on October 8, 2008

Can someone explain the Brave New World first sentence to me? Is there some official scale where one can see that this guy's perdiciment is bad enough, but everyone with extended wear contact lenses is a cyborg abomination?
posted by Kid Charlemagne at 12:38 PM on October 8, 2008

Did anyone else think Erik was trying to say something like "Amanda Bynes is hot?" Like three paragraphs before this big mystery the author mentioned they were watching an Amanda Bynes movie...
posted by autodidact at 2:04 PM on October 8, 2008

This appears to be 0 quality of life.

But if they do succeed with this device, would that still be true? And he's a young man; it's even possible surgery to correct or help his condition might even be available before he's an old one.

I can't speak for Erik of course, but if there were any hope at all, I would want my son to keep going, if he could.
posted by emjaybee at 2:11 PM on October 8, 2008

Deep brain optimism: A list of things that deep brain stimulation has been used to treat.
posted by homunculus at 2:18 PM on October 8, 2008

Wow. Thanks for posting this, it's an amazing article.
posted by Locative at 2:28 PM on October 8, 2008

Yes, he's constantly in pain.
No, the rest of us can't imagine what it's like.
Yes, he lies with his eyes often.
No, he no longer spends much time thinking about what he could do if he could move.
No, even in his dreams, he doesn't move.

posted by Rhaomi at 6:24 PM on October 8, 2008

Some coma patients 'feel pain'
posted by homunculus at 10:40 AM on October 9, 2008

Great article, thanks.
posted by not_on_display at 12:04 PM on October 9, 2008

Harnessing The Power Of The Brain: Scott Pelley Reports How Brain Computer Interface May Help The Paralyzed In The Future
posted by homunculus at 6:50 PM on November 2, 2008 [1 favorite]

I saw that last night and thought of this thread too, homunculus.
posted by TedW at 6:37 AM on November 3, 2008

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