ALS patient depends on eye-blink technology
Sunday, February 24, 2008
By David Wenner
MECHANICSBURG, PA. -- After nearly seven years with ALS, Andy Guest can move one finger on each hand.

He can move his neck.

Those are the only limbs this 42-year-old former trucker can move due to his amyotrophic lateral sclerosis, or Lou Gehrig's disease, a progressive neurodegenerative condition.

Yet with the blink of an eye, he operates his computer and controls his TV.

He does it with new technology that enables people who are paralyzed to control devices or even "speak" by flicking their eyes over a computer screen.

"At this stage of my life, television is how I spend most of my time," said Guest, 42. "It gives me independence."

He uses the same system featured in a 2006 episode of television's "ER."

About 500 persons in the United States have used the system since it became available about four years ago, said Logan McKinley of Eye Response Technologies, a Virginia-based company and sole producer of the system.

A full-featured set up costs about $10,000. Medicare covers roughly 70 percent of the cost for people with qualifying disabilities, including Guest.

The key component is a camera fixed on one of Guest's pupils. He activates buttons and icons on the computer screen by looking at them. He can carry out tasks just as if he were clicking a mouse.

He can open e-mail, and select letters to spell out a response. The system also can produce an automated voice for people who can't speak.

Typed words and programmed phrases can be converted to audible statements such as "please wipe by eyes."

The system can be used to control devices such as lights, telephone and thermostat.

Eye Response is glad for the exposure on "ER," but the TV show exaggerated the system's capabilities, McKinley noted.

Guest can still speak, but his ability fades as his lungs tire. He continues to visit restaurants, church and activities such as his children's swimming meets.

One barometer of his condition is his breathing capacity, which has dropped to less than 15 percent of his former level.

ALS patients can usually breath fine until their breathing capacity drops below 25 percent.

Eventually they need a ventilator to breath and stay alive.

He has children ages 12 and 14. Divorced about two years ago, he has a close companion, Pam Thomas. Thomas, who has a young daughter, says she loves Guest and will stay with him to the end. They're a family.

Guest has decided if went on a ventilator, he would be as dependent as a newborn baby. Everyone's quality of life would plummet.

"When it's time for these old lungs to give out, I'll move on," he said.

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