Monday, October 6, 2008

Locked In Syndrome - Can Computers Help Patients Communciate?


Image of electrode implanted in the Brain Cortex to help locked-in patients communicate from Society for Neuroscience

Esquire Magazine, via blogger Frontal Cortext, has a fascinating article exploring:
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.
Erik suffers from a condition called Locked-In Syndrome. According to the National Institute of Neurological Disorders and Stroke:
Locked-in syndrome is a rare neurological disorder characterized by complete paralysis of voluntary muscles in all parts of the body except for those that control eye movement. It may result from traumatic brain injury, diseases of the circulatory system, diseases that destroy the myelin sheath surrounding nerve cells, or medication overdose. Individuals with locked-in syndrome are conscious and can think and reason, but are unable to speak or move. The disorder leaves individuals completely mute and paralyzed. Communication may be possible with blinking eye movements
The Esquire article references a patient at Roosevelt Island's Goldwater Hospital whose locked-in syndrome was finally recognized and she became a poet and author.
... There are stories of people being locked-in for years before anyone notices the fully conscious person hiding inside the paralyzed body. 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....
As reported in this 1997 NY Times article:
Once Julia had been thought incognizant. For six long years, while her caretakers at Goldwater Hospital assumed her brain had died, she had been kept alive, overhearing the talk of the nurses who hated the odious task of attending to one who seemed so dead.

Only after six years did a speech therapist think of asking her to lift her eyes if she understood and then started eye spelling with her. Now in a kind of Helen Keller story, only more so, with the help of Richard Tayson, a young poet, she has written a book about her journey back to being able to communicate and take charge of some quite important things in her life.

Their book, ''Look Up For Yes,'' will be published in April by Kodansha America, the publishing house that brought out ''The Delaney Sisters.''
The Diving Bell and the Butterfly was a very interesting film made about Jean-Dominique Bauby, a French fashion magazine editor who suffered a stroke that left him with locked-in syndrome. For more information on locked-in syndrome, visit the Neural Interfacing Research Institute.

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