March/April 2000
Tapping the Life Within
Imagine being wide awake and yet completely unable to move. For almost 2,500 patients in the United States who are victims of severe strokes and conditions such as amyotrophic lateral sclerosis (Lou Gehrig’s disease, or ALS), this scenario is a real-life nightmare. Bound and gagged by near-total paralysis, these patients must be fed intravenously, rely on machines to breathe, and in some cases, must have their eyelids taped open so they can see. Perhaps worst of all, although they remain aware, these “locked-in” patients cannot communicate.
Over the last two years, neurologist Phillip Kennedy and his colleague Roy Bakay, a neurosurgeon, both with the Department of Neurosurgery at Emory University, Atlanta, Ga. have uncorked the thoughts of two locked-in patients with “neurotrophic electrodes” implanted into the motor cortex areas of their brains. Neurons grow into the devices—glass tubes containing minuscule low-impedance wires—allowing the researchers to measure the cells’ electrical activity.
The second patient, John Ray—who goes by JR—is a 53-year-old who had been a drywall contractor until a 1997 brainstem stroke rendered him locked-in. “He can laugh and cry, but he can’t speak; he can’t move. Yet his attitude is absolutely incredible. He’s got great energy,” says Kennedy, who with Bakay implanted two electrodes into JR’s brain in March of 1998. Since then, their patient has learned to use his thoughts to operate a computer program designed by Georgia State University that lets him select letters and produce audible responses. Kennedy has formed a company called Neural Signals to fund further development of the technology.
Researchers in the United States and Europe have also released locked-in patients with noninvasive systems that use electrodes placed on the outside of a person’s skull to pick up EEG signals. “We have several patients who are able to communicate and write letters,” says psychologist Niels Birbaumer of the University of TŸbingen, Germany, who works with ALS patients. Although Kennedy believes the invasive implants promise a superior signal, the results of both approaches have, thus far, been surprisingly similar—three or four characters per minute.
Although that may sound agonizingly slow, even a few words can make a big difference. “This is probably one of the most terrifying states a human being can be in,” and many locked-in patients die “because of hopelessness and not because of disease,” Birbaumer says. “Most of our patients are now much older than was predicted by their physicians because their psychological health is improving.”
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