Friday, December 18, 2009

New technology gives voice to Locked-in Syndrome patients

Communication methods for persons with Locked-in Syndrome (LIS) continue to progress. I found this one yesterday on CNN. Scientists have found a new way to use Brain Computer Interface (BCI) technology to help persons with LIS communicate.

It remains experimental, but it's a step in the right direction. A Georgia man, who has been locked in for 10 years, had an electrode implanted in his brain which allows him to turn his thoughts into sounds. Sounds high tech and it really is.

Other BCI technology has been used to allow people with LIS to type their thoughts.

I know they are in the beginning stages, but it's important to help people with LIS. No matter how it happens, the person with LIS is typically completely paralyzed and mute — think Frenchman Jean-Dominique Bauby, who blinked out the memoir The Diving Bell and the Butterfly.

Recently, it was announced that a Belgian man was misdiagnosed as being in a vegetative state when he was in fact LIS. The jubilation was followed by tons of questions. Why not just let this man be happily "unlocked?" Why the questions?

The concern hinged on how he communicated. Bauby, the guy in Georgia and even my late husband Jimmy communicated by blinking their eyes. There are different auditory scanning systems, but it's really easy to understand the LIS person is speaking.

The Belgian man, Rom Houben, creates messages with the help of an assistant who guides his hand along a board. Folks all over the world expressed skepticism over the communication method and outlined scientific studies about how Houben's communication method was in question.

By blinking, it was very clear that Jimmy was in control of his message. He directed his message. The only assistance he had was verbalizing his thought after he spelled it out one letter at a time.

Personally, I hope the skepticism in the Belgian case is unfounded. I want to have the same "happy fuzzy" feeling I had when I first learned of his story. The guy can communicate now. Be happy for him. He has suffered 23 years of a wrong diagnosis.

I'm keeping tabs on both stories, but I'm more interested in the new BCI technology. It's wonderful how science continues to progress and create new ways to improve our lives.

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