Working to unlock syndrome


College students developing technology in effort to help Naugatuck man

Engineering students in California have spent the last three months trying to create a new way for a mute, paralyzed Naugatuck man to communicate.

Since October, graduate and undergraduate students at the University of California-San Diego have been experimenting with sensors, software and wireless devices that might allow Bob Veillette, stricken with “Locked-In Syndrome” eight years ago, to communicate. The team of students, under the direction of professor Nadir Weibel, plan to visit Veillette in late January to learn more about his condition.

Veillette, the former managing editor of the Republican-American, can hear, see and feel pain, but is completely paralyzed save for limited movement of his eyes and eyebrows. The UC-San Diego teams are expected to continue their research in California and return to Naugatuck in March with a finished prototype.

“I was very touched and really interested in his condition,” said Weibel, a research scientist in the Department of Computer Science and Engineering at UCSD. He was unaware of locked-in syndrome until earlier this year. “This is a very challenging issue, technology-wise. How can we help a person with such limited abilities? If there is something we can do, I want to try to do it.”

However, Weibel, now reviewing suggestions developed by eight teams of undergraduate and graduate students, said he could not guarantee success, particularly since neither he nor the students have met Veillette.

“We don’t want to give any false hope,” he said. “We don’t know if this will work.”

Nadir discovered Veillette through the Moxie Foundation, a nonprofit group that funds innovative engineering solutions. Cheshire businessman Fran Powell, who knew the Veillettes socially, contacted the organization in the spring, eager to determine whether research done with Google Glass — the eyewear that accesses the internet — might help Veillette. Powell’s company, Newmark Inc., develops non-invasive medical devices to treat pain.

Irwin Zahn, CEO and chairman of the Moxie Foundation, said that while Google Glass would likely not assist Veillette, other software and applications might.

“It’s a fascinating project and it has great potential implications for other people,” Zahn said. “What’s marvelous is, hopefully, as the project proceeds, other people with infirmities or disabilities will be able to communicate.”

This is the second time since Veillette’s 2006 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 Veillette’s wife Bonnie that consistent messages from the implant were no longer being heard.

Weibel said he has not been in contact with researchers with Massachusetts General Hospital, but plans to contact them.

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.

“He gets mixed up,” Bonnie Veillette said. “I think he just loses his train of thought and forgets what he says.” (Veillette has been able to communicate by raising his eyebrows as alphabet letters are recited to him. He strings the letters into words and the words into sentences.)

That’s one of the reasons the Veillettes are hopeful, but not overly optimistic, about the research. In the past, Veillette could “speak” full paragraphs. His wife says he is now down to three or four words. However, she said she is certain her husband would participate in the research.

“I’m sure Bob is open to try anything,” she said. “He always was. So, it’s good. It’s encouraging.”

Powell is more optimistic. He has been to UCSD to view the solutions students devised.

“I saw eight presentations and of the eight, five of them had a ‘wow’ factor to them,” he said. “What was in my mind is you’d need one piece of each of those five to get what Bob needs. All of those pieces, or some part them, all have to be put together.”
Nadir said he now wants to visit Veillette to tailor a device to him.

The effort “certainly is impressive,” said Veillette’s son, Mark Veillette, 31, a mathematician who now lives in Wilmington, Mass. However, noting his father’s “eye-flutter,” he said Veillette had tried several eye-tracking devices but met with frustration.

“Nothing like that ever worked too well because he couldn’t control his eye up to the level the device requires,” Mark said.

Nadir is now reviewing the UCSD projects and determining which of the students want to continue with the research. He expects three to four more students to continue with the research for the next six months. He said he and a “master student” will visit Veillette at the end of January with some of the devices.

“In technology, you can work with some pretty cool stuff, but it’s rare that you can make a difference,” Weibel said. “The idea is to build something that would allow him to better connect with people around him. It could do a lot. A lot of it is adding convenience to him to be a lot more self-sufficient.”