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Wednesday, October 08, 2008

Hope for the Locked-In: Amazing story from Esquire about new technology that offers hope to those suffering from Locked-In Syndrome that they may one day be able to communicate again. Just gut-wrenching. Via MeFi.

It's been six weeks since I first watched Erik do his speech exercises in Dr. Kennedy's lab, and in that short time he's become much more adept at making the computer obey his commands. Back in early April, he was having trouble producing a single vowel sound consistently. Now he's stringing together chains of two, even three vowels at a time, and he's making far fewer errors. Kennedy asks a research aide to reconfigure the software so Erik can roam around the "vowel space" with total freedom.

"Try uh-ah," Kennedy says. The cursor jumps around the screen from hut to hat, and the deep computer voice echoes the trembling sound that Erik's brain is trying to produce.

Next he tries uh-oh and then uh-oo, and makes them both perfectly.

Kennedy puts his face right in front of Erik's. "You can really do it when you want to," he says ecstatically. "This time I want you to go from oe to oo and then up to ee." The hard ee sound is the vowel Erik has been having the most trouble with. To make it, he has to think about spreading the edges of his lips and stretching his cheeks. The part of the premotor cortex that controls the cheeks is right next to the region that controls the lips, tongue, and jaw, where Erik's implant sits, but Kennedy suspects the cheek neurons may still be too far away for the implant to catch their firing signals. Nevertheless, when Erik practices tying together an oe-oo-ee nine times in a row, he nails it on six, only failing on the other three tests because of a cough or a spasm. It's hardly speech, but Kennedy and Guenther are now on the verge of introducing their new computational model designed to allow Erik to produce consonants as well, and eventually real, meaningful sentences. But even with just vowels, there is a lot he should soon be able to say. In the 1950s, a Swedish linguist named Gunnar Fant demonstrated that you can string together the sorts of vowellike sounds that Erik can already make to form slurred but comprehensible speech.

Kennedy pulls up a program on his computer screen to show me. It's the same vowel map Erik has been navigating with his mind, only Kennedy can now control it with his mouse. As he loops his cursor around the screen, a sound comes out of the speaker: "Ow-uuuuuuh-oo. Ai-uuuuuh-oo." He makes it again, and this time I hear it: "How are you? I love you." And again:

"How are you? I love you."

"How are you? I love you."

"How are you? I love you."

Dr. Kennedy turns to Erik, who has been watching us the whole time. "I'd like him to be able to say that to his father."

Erik's body shivers in one of his regular, and painful, muscle spasms, and then sinks back into his wheelchair. The session is over, but Eddie hasn't yet returned from his walk. Kennedy plays some Ozzy Osbourne, and the two of us sit in the corner making small talk about the Atlanta traffic. There's nothing for Erik to do but stare at the wall and listen and wait.