Engineers work to unlock syndrome

From left, Charles Boulier III, of Ion Bank, Nadir Weibel and Colleen Emmengge and Brian Anderson, all of the University of California-San Diego, work with Naugatuck resident Bob Veillette at his home last week. –REPUBLICAN-AMERICAN
From left, Charles Boulier III, of Ion Bank, Nadir Weibel and Colleen Emmengge and Brian Anderson, all of the University of California-San Diego, work with Naugatuck resident Bob Veillette at his home last week. –REPUBLICAN-AMERICAN

NAUGATUCK — Two California engineering professors and a graduate student visited the Naugatuck home of a paralyzed, mute man last week, trying to create a device that would allow him to communicate.

“I was surprised at his willingness and his openness and the effort he puts into what we are doing,” said Nadir Weibel, of the Department of Computer Science and Engineering at University of California-San Diego.

Since last October, Weibel’s team has been experimenting with a variety of devices and applications that might allow Naugatuck’s Bob Veillette, stricken with locked-in syndrome eight years ago, to communicate.

Under the direction of Weibel, the researchers brought some of the devices — including an “eye tracker” and a computer tablet — to Veillette’s home, trying to determine if what worked in their lab would work in real time with Veillette.

Veillette, the former managing editor of the Republican-American, can hear, see and feel pain, but is completely paralyzed except for his eyes and eyebrows. The USC-San Diego team is trying to work with sensors, software and wireless devices that might allow Veillette to “speak” beyond the blinking he does now to communicate.

Much of the work the researchers performed this week involved determining the power and agility of Veillette’s eyes. That’s critical because Veillette, who was left in the locked-in state by a brain-stem stroke, has limited movement of his eyes. Researchers are trying to harness those eye movements to allow him to focus on certain phrases or applications he would see on a computer tablet placed in front of him.

“We’re looking at three different things,” Weibel said. “We’re looking at the dynamics of the movement, the duration of the movement and blinking.”

Weibel, an associate research professor, said he was impressed at Veillette’s abilities.

“We had heard a lot about previous work with the eye tracker and we were a little pessimistic because the prior experiences weren’t good,” he said. “But we found we can get the data we need.”

“It’s quite exciting,” said fellow researcher Colleen Emmenegger, who has focused her research on perception and performance. “I wondered what it was like to use this software with someone who has locked-in syndrome. I really get to see how Bob gets to use it and how his eyes are performing.”

But the outlook is not all positive. Veillette’s wife Bonnie notes that Veillette’s cognition and eye movements have been hampered by a series of seizures he had two years ago and had again earlier this year. Last Friday, Veillette seemed to have trouble moving his eyes from an upward staring position, a “look” Bonnie Veillette said he sometimes gets while having a seizure.

But Charles Boulier, president & CEO of Ion Bank, whose foundation funded the travel for the researchers, was hopeful.

“I pray every day that this works,” Boulier said.

The bank was an early financial supporter of Bob Veillette’s condition, which includes around-the-clock home care.

Weibel’s research has concentrated on using software engineering to interact with human beings all day long, a process called “ubiquitous computing.” Google Glass, eye wear that accesses the Internet, is a form of ubiquitous computing.

He and his researchers will return to California with the eye data they have accumulated and try to fine-tune applications that might help Veillette, even with small phrases, like “Bonnie is in the room” or “May I have a blanket?”

Bonnie Veillette said she would not give up hope that Veillette’s condition will improve.

“If anything could help Bob have more control, I’m for it,” she said.

Weibel discovered Veillette through the Moxie Foundation, a nonprofit group that funds innovative engineering solutions. Cheshire businessman Fran Powell, who knew the Veillettes, contacted the organization in the spring, eager to determine whether USC research might help Veillette.

This is the second time since Veillette’s stroke that university researchers have tried to address the communication deficit that is considered the most devastating effect of the syndrome. In 2011, researchers at Brown University and Massachusetts General Hospital implanted a sensor in Veillette’s brain, hoping it could record his neural signals and translate them into computer directives that would move a prosthetic hand or cursor.

Although researchers were successful in getting Veillette to “move” the hand and cursor by imagining it, the research was curtailed after a series of seizures struck Veillette over a 12-hour period on Dec. 27, 2012. The seizures considerably weakened his limited power to communicate. Earlier this year, researchers surgically removed the sensor, telling Bonnie Veillette that consistent messages from the implant were no longer being heard.

The reasons for the erosion in Veillette’s condition and the diminished recording ability of the implant remain unclear. Researchers at MGH have insisted that it was not the baby aspirin-sized neural implant that caused the brain seizures, which left Veillette hospitalized for four months. Since the seizures, his ability to communicate has been sharply diminished.