Patients with ALS find new ways to communicate


Eloise Lovelace is learning to write with her eyes. Each blink tells a computer-mounted camera the word she wants to use. As the author of multiple children's books, words have always come naturally to Lovelace. But a diagnosis of ALS has made expressing them increasingly difficult.

"When you have ALS, all your voluntary muscles slowly begin to not work. All the muscles that move our arms and legs, and our ability to speak," says Amy Roman the augmentative communication specialist in the Forbes Norris Research Center at California Pacific Medical Center in San Francisco.

She technologies are quickly evolving to fill in the gaps for ALS patients. Advanced software and high-resolution cameras can track the direction of a patient's eyes as they scan for words on the screen, detecting subtle signals like a blink, or in some cases even less.

"I have some patients who can't blink so we set it to dwell, where if they look at the word long enough it will select the word," she says.

She believes the explosion of consumer products like the iPad and Android tablets are ushering in a new era of lower budget solutions, some of which are adapted on the fly by technicians at the center. For instance, laser pointer glasses allow patients to pick out words or letters from a fixed chart.

Inexpensive communication apps are also on the market for as little as two dollars for basic programs that run on tablets. Lorene Lee uses a touch pad to communicate with her husband Tony, who listens as it spells out messages like, "I need a glass of water."

"To have the technology to be able to communicate, that means a lot," says Lee.

The Forbes Center also runs a lending program with support from the ALS association, matching patients with the most effective communication technologies, independent of cost.

With her own hand, Lovelace lets us know the continued ability to write is invaluable. She is continuing her book entitled, "A new reality: My life with ALS." It was a story she could ultimately tell with her heart, her hands, and even her eyes.

"I want to keep people doing as many of the things as they used to do because their mind is in there, we just have to find a way to connect," says Roman.

The Golden West Chapter of the ALS Association provides communication equipment for patients in 31 California counties, as well as funding for the lending library. The group has more information on services and education for patients and their families on their website.

written and produced by Tim Didion

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