It was frustration with the slow speed and limited accuracy of the eye-gaze system that led Scott and Lynn to the Laboratory of Neural Injury and Repair at the Wadsworth Center in Albany, part of the New York State Department of Health, about five years ago. “My boss, who is a neuroscientist, actually found them,” says Lynn.

The BCI communication system that Scott uses was developed by a team led by Jonathan Wolpaw, an investigator and research physician at the center, based on a method first described by Emanuel Donchin, a professor emeritus of psychology at the University of Illinois at Urbana-Champaign. Scott was the first person in the country to use the device independently in his own home (there are now four others). When he first contacted the Wadsworth Center, the BCI was still in the developmental stages. “When he called a year later, we agreed it was time to try it out,” says Theresa Vaughan of Wadsworth’s BCI group. “Scott’s enthusiasm and level of commitment made him an ideal first candidate for the system.”

According to Alex, after a couple of weeks of use, his father told the researchers that if they let him keep the equipment, he would help them with their research. “It made such a huge difference in the quality of his life,” he says.

True to his word, Scott continues as Subject Number 1 in the Wadsworth Center’s ongoing BCI home studies. He generates data that the scientists at the center upload on a regular basis. In return, they provide technical support and routine maintenance.

According to Vaughan, Scott’s ongoing success with the system that he has used for over three years now has been critical. “We are about to take the BCI home-use research to another level, and some of that is related to Scott’s persistence,” she explains. “He was out there on the crest of the wave.” At press time, Wadsworth and the Veterans Administration were planning a five-site clinical trial of the BCI system for patients with ALS. In addition, together with the Wharton School’s Leonard Lodish, the Samuel R. Harrell Professor of Marketing (who has raised $725,000 for the ALS Association through annual long-distance bicycle rides with his wife), the Wadsworth group has established the Brain Communication Foundation, dedicated to supporting the widespread dissemination of BCI systems to people like Scott.

While technology has changed Scott’s life, the human support he receives is equally critical. “There are a lot of things that conspire to make this all work,” notes Lynn, who coordinates her husband’s around-the-clock care while maintaining her own professional caseload and teaching responsibilities. Her physical therapy students help with Scott’s care, and “one or more of them lives here,” she explains. In addition, there is Scott’s assistant, Dana Williams, a certified nursing assistant, who drives a specially equipped van from the Mackler home in Delaware to Penn’s campus every weekday morning except Friday, sets up Scott’s BCI system, answers his phone, monitors his ventilator, feeds him through his feeding tube, then turns around and takes him home at the end of the day. Dana, who has been doing the job for the past seven-and-a-half years, calls it “sweet” because she gets to spend her whole day with Scott.

At the time Lynn and Scott discovered the Wadsworth BCI, the Macklers’ live-in physical therapy student was one Jill Heathcock, who was engaged to a computer software programmer named Bob Cardillo. Eventually Bob moved in as well and became what Vaughan refers to as “the critical interface” between the technology and Scott.

Scott had already been using software that Cardillo helped write to control his computer via the eye-gaze system. Cardillo provided a similar interface with the BCI. This software, dubbed Brain Keys, enabled Mackler to operate the BCI almost the same way he had been operating the eye-gaze system, although with much more reliable results. “To select a letter, your brain sends out a signal similar to the one you use to hit a letter on a keyboard,” Cardillo explains. “Anything that a computer can control can be programmed using Brain Keys and the BCI.”

In fact, Cardillo rigged Scott’s system to be able to do more than just type emails. He designed an interface with a word-prediction program that makes it easier for Scott to compose documents. He also wired the television remote control, lights, and thermostat so that Scott is able to control all three. “One night, I was watching some chick-flick on television when all of a sudden the channel changed to ESPN,” laughs Lynn. “I looked over at Scott and he had a goofy grin on his face and he changed the channel back. How typically male that he could control the remote before he could control anything else!”

 

July|Aug 09 contents
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COVER STORY:
A Life Worth Llving By Kathryn Levy Feldman
Photography by Chris Crisman C’03

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At the time of his diagnosis, no one—including Mackler—imagined he would still be directing his research lab a decade later.

 
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Last modified 6/26/09