Amyotrophic lateral sclerosis (ALS) is a neurodegenerative disease that, over time, destroys the ability of the brain and spinal cord to control muscular movement. After enough time battling the disease, ALS patients will develop “locked in” syndrome, in which they lose the ability to control any of their normal muscular movement but will retain the ability to think, which “locks” them into their bodies.
Ordinarily, developing communication through eye movement is the only way to send and receive messages with a patient who has ALS locked in syndrome. However, recent experiments with changes in oxygen levels in the blood caused by brain activity may have uncovered a way to “read” the thoughts of ALS patients and help them answer simple yes and no queries.
How ALS Patients Become ‘Locked In’
Slow decreases in coordination and muscular strength in patients with ALS may lead to the common myth that the disease causes a decrease in brain activity, but issues with muscular control actually stem from the degeneration of motor neurons.
Motor neurons, which send instructions for movement from the brain into the spinal cord and from the spinal cord into the body, break down over time in patients with ALS. Their ability to signal muscles to move slows progressively as motor neurons decrease in number and fail to function.
Even with the help of modern medicine, the disease is fatal for all patients. When enough nerve cells connected to muscle tissue die, the body’s regulatory operations cease to function, and patients die. Before death, however, a combination of medicine, support groups, and multidisciplinary care allow locked in ALS patients to continue living with a relatively high quality of life.
Patients who receive treatment before death lose the ability to move and talk, but their brains still work normally. Since they can think but cannot move or communicate their thoughts, medical professionals consider these ALS patients to be locked in to their bodies.
Helping Locked-In ALS Patients Live
Though finding oneself locked in may be a frightening experience, medical professionals have found that many ALS patients are happy despite their disabilities. To improve upon that happiness, doctors and researchers are looking for new ways to improve communication.
Researchers at the Wyss Center in Switzerland have pioneered a simple communications system that takes advantage of the changes in blood-oxygen levels when the brain activates. Using a near-infrared spectroscopy technique, they watched changes in the color of blood as oxygen levels changed to determine if patients were answering yes or no to questions they heard.
The team achieved an astounding 75% accuracy with their tests. Since trials are only beginning, researchers have to ask questions multiple times to confirm their results. But receiving answers in real time straight from the thoughts of ALS patients with locked in syndrome is a phenomenal breakthrough and could lead to the development of new communications systems for severely affected patients.