Thanks to extraordinary reviews for the 2007 French film, “The Diving Bell and the Butterfly.” in the New York Times and other influential publications, this rare and tragic condition is gaining national interest and attention.
Locked-in syndrome is a rare neurological disorder characterized by complete paralysis of voluntary muscles in all parts of the body except for those that control eye movement. Individuals with locked-in syndrome are conscious and can think and reason, but are unable to speak or move. Communication may be possible with blinking eye movements.
There is no cure for locked-in syndrome, nor is there a standard course of treatment. While in rare cases some patients may regain certain functions, the chances for motor recovery are very limited. There are no firm numbers on how many people suffer from locked-in syndrome. However, one estimate, which is based on National Institute of Health statistics on brain-stem strokes and survival information, puts the number at as many as 50,000 individuals in the United States alone.