Fundamental theories regarding consciousness, emotion and quality of life in sufferers of paralysis from Amyotrophic Lateral Sclerosis (ALS, also known as ‘Lou Gerhig’s disease’) are being challenged based on new research on brain-computer interaction. ALS is a progressive disease that destroys neurons affecting movement. The study appears in the latest issue of Psychophysiology. The article reviews the usefulness of currently available brain-computer –interfaces (BCI), which use brain activity to communicate through external devices, such as computers.
The research focuses on a condition called the completely locked-in state (CLIS, a total lack of muscle control). In a CLIS situation, intentional thoughts and imagery can rarely be acted upon physically and, therefore, are rarely followed by a stimulus. The research suggests that as the disease progresses and the probability for an external event to function as a link between response and consequence becomes progressively smaller, it may eventually vanish altogether.
Researchers have found that by implementing a BCI before the CLIS state occurs, a patient can be taught to communicate through an electronic device with great regularity. The continued interaction between thought, response and consequence is believed to slow the destruction of the nervous system.
The findings are also raising a number of new questions about the quality of life amongst paralysis sufferers. Patients surveyed were found to be much healthier mentally than psychiatrically depressed patients without any life-threatening bodily disease. Only 9% of ALS patients showed long episodes of depression and most were during the period following diagnosis and a period of weeks after tracheotomy.
“Most instruments measuring depression and quality of life are invalid for paralyzed people living in protected environments because most of the questions do not apply to the life of a paralyzed person. Special instruments had to be developed,” says Niels Birbaumer, Ph.D., author of the study.
This contrasts previously accepted notions as many doctors believe that the quality of life in total paralysis is extremely low and continuation of life is a burden for the patient. The study challenges the myth of helplessness, depression and poor quality of life in paralyzed persons that lead to hastened decisions on euthanasia.
