02.06.08
Locked-In Syndrome
In today’s show, adapted from an article published on the Oscar web site written by Linda Kobert, we examine the work of Dennis Proffitt, Professor and Director of the Cognitive Science Program, whose research focuses on creating computer interfaces to help make life more bearable for patients with ALS and other diseases that are the cause of locked-in syndrome.
Up to now, the most iconic connection to Amyotrophic Lateral Sclerosis or Lou Gehrig’s disease, is the famous farewell in Yankee stadium By Mr. Gerhig. Forced to retire from baseball, the profession he loved and was best known for, he became the personification of this devastating disease.
In 2002, Peggy Chun, a popular artist was diagnosed with ALS. This debilitating neurological disorder progressively destroys a person’s motor neurons. As a victim of this incurable disease, Chun can feel, see, smell, taste, think and imagine, but she can no longer move in any way. She is, in the parlance of the medical profession, “locked-in.” ALS is the most frequent cause of locked-in syndrome, which begins with numbness in the extremities and progresses upward until all motor function disappears.
Usually the last thing you lose is eye movement,” says Dennis Proffitt, U.Va. cognitive psychologist and Commonwealth Professor of Psychology. “When you lose that, you are cognitively alert, you can think, you can feel, but you can’t move a thing. As a result, you can’t communicate in any way. It’s awful.”
Funded by the National Science Foundation, Proffitt, his colleagues at Georgia Tech and a company called Archinoetics in Hawaii are working to develop computer interfaces that may one day make life for locked-in patients more bearable.
Scientists know different parts of the brain are activated when a person performs different functions. For example, moving the left arm activates an area on the right side of the brain, the back of the brain is active with visual imagery and the frontal lobe is active when one tries to focus attention on something. Proffitt’s system simply detects whether or not a particular area of the brain is actively engaged at the time.
With this in mind, researchers are currently testing a technology that allows Chun and other locked-in patients to answer simple yes/no questions. An interface using functional near infrared imaging (fNIR) assesses activity in Broca’s area, a part of the brain where verbal working memory occurs. They strap a device, just above the left ear that projects a light beam through the skull measuring changes in blood volume and oxygenation when Broca’s area is engaged.
With the device in place, subjects are asked to count in their head when they want to activate the verbal working memory and initiate a “yes” response. When they want to say “no,” subjects think of clouds or rest or think “la la la.” It’s a process that most people can engage easily without having to spend a long time training to do it.
Proffitt said, “it was hard for us to think of something we could ask a person to do — something easy to control, something you can turn on and off — that we could measure in this way. What we came up with was sub-vocal speech … talking to yourself. You could be counting, or you could be reciting a poem. We couldn’t tell the difference. We have no idea what you’re doing. We just know the kind of thing you’re doing.”
He stresses, “It’s not reading your thoughts, we can’t do that.”
Proffitt admitted, “at this time the system is primitive, but it’s a start. Right now it’s an on/off switch. What we want to do is to get continuous control so the person is not just activating … Not just ‘yes’ or ‘no,’ but small to large, continuous control within some range. If we could achieve that in the next few years, that would be a huge improvement in what we will be able to do with the technology.”
For the half million people in the world with locked-in syndrome, having the ability to communicate, even in this primitive fashion, can make the difference between suffering in silence and a meaningful life.
But Peggy Chun isn’t waiting for the technology to evolve. This future icon of the human spirit refuses to be shut down. She uses the system now as a tool for creativity. With the sensor in place over her left ear, the artist activates Broca’s area to select shades from a palette that show up on a computer screen as horizontal gradations of color. She calls it “brain art,” and it may be simple, but it’s selling like hotcakes.
You’ve been listening to the Oscar Show, I’m Jacob Canon. Join us next week when our topic will be the research of Jared Harris, assistant professor at the University of Virginia’s Darden School of Business concerning business ethics and strategy, as he looks to answer the questions, “What motivates a company to cook the books? And, what happens to businesses that get caught committing financial fraud?”