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Biofeedback and Locked In Syndrome-- in ALS (Amyotrophic Lateral Sclerosis /Lou Gherig's Disease)

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Over the year's we've been repeatedly contacted by friends and family members of people in various stages of ALS. They are seeking the help of biofeedback to stay connected with their loved ones as the muscles stop working.

There have been a number of studies and reports, using different approaches to biofeedback or applied psychophysiology to enable 'locked in' patients to communicate. The basic idea is that physiological sensors can detect changes in physiology that the patient voluntarily and intentionally makes-- as means of communicating, just as giving a thumb up or down is a signal. The articles and links below are provided as a service to help pull together some of the information.

We also have a DVD of a workshop presented on the use of brain biofeedback to address this problem, presented by Niels Birbaumer, to our knowledge, the inventor of this approach.

Futurehealth does offer biofeedback technology for sale. We make no promises that these technologies will enable you and your loved ones to communicate. Some people have purchased this equipment in an effort to try, to experiment with the technology. Please be clear that this is an expensive, unproven approach, though there is some research.

One thingseems clear, the earlier a patient gets started with this, before the 'locked in' situation is reached, the better the potential results.

Oddball Science Helps "Locked In" People Communicate

Newswise -- University of South Florida psychologist Emanuel Donchin and his students are perfecting ways to help people who are paralyzed yet fully conscious - with intact cognitive systems - communicate via a brain computer interface (BCI). Although the patient is unable to communicate, the electrical activity in their brains is normal. Through the BCI it becomes possible for users to "type" on a "virtual keyboard" using their brain waves.

The BCI, says Donchin, can help patients who suffer from amyotrophic lateral sclerosis (ALS, or Lou Gehrig's disease) - a rare progressive neurological disorder that ultimately leads to a complete paralysis of voluntary muscles in all parts of the body; cerebral palsy; or patients "locked in" following a brain stem stroke.

"In essence, we are trying to provide the brain with new channels for communication and control by capturing and analyzing the electrical or electroencephalographic (EEG) activity produced in the brain," he explained. "Our goal is to restore communication functions."

To create an assistive "mental prosthesis," Donchin's extensive work is focused on capturing and reporting unique brain activity that occurs upon the visual observation of a rare or "oddball" event. According to Donchin, the "oddball paradigm" relies on a response to deviant stimuli embedded in a series of standard stimuli, such as letters, symbols and commands flashing randomly on a keyboard-like screen. By analyzing the electrical activity as event-related brain potential (ERP) generated by the oddball event, the user in Donchin's studies focuses attention on the character to be communicated as elements of the display are flashed on the screen.

"The chosen character is the one eliciting a 'P300,'" said Donchin. "Thus, by detecting which rows and columns in the display elicit a P300 the computer can determine the character the patient is trying to 'type.'"

In collaboration with the Wadsworth Institute at SUNY-Albany, Donchin's group has conducted numerous studies with healthy and disabled volunteers who, wearing electrodes on their scalp attaching them to the BCI, were placed in front of an electronic screen display of 26 letters of the alphabet and other symbols and commands in a six-by-six row and columns flashing in random sequence. Test subjects were able to "operate" a virtual keyboard when their EEG reactions to oddball events in the random flashing were analyzed. Researchers found greater electrical response in the rarely presented, or oddball, stimuli and the spike in the subjects' EEG at time of the oddball event created a means of communication.

"Ideally, the subject can spell out a message by successively choosing among the 26 letters," explained Donchin. "We are examining the operating characteristics of this communication channel and analyzing the speed with which there was an EEG focus on the letter of interest."

Test subjects were able to communicate their choice of a letter at the rate of about one character every 26 seconds.

"This is, of course, a slow rate of communication," said Donchin. "But, considering there is no other channel of communication, even this slow rate is welcome."

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One theme has run through my work for the past 40 plus years-- a desire to play a role in waking people up, raising their consciousness and empowering them. I was the organizer founder of the Winter Brain, Optimal Functioning and Positive Psychology and StoryCon Meetings and president of Futurehealth, Inc., with interests in (more...)

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