This information is provided by the National Institutes of Health (NIH) Genetic and Rare Diseases Information Center (GARD).
Locked-in syndrome is a rare neurological disorder characterized by complete paralysis of voluntary muscles, except for those that control the eyes. People with locked-in syndrome are conscious and can think and reason, but are unable to speak or move. Vertical eye movements and blinking can be used to communicate. Locked-in syndrome may be caused by brain stem stroke, traumatic brain injury, tumors, diseases of the circulatory system (bleeding), diseases that destroy the myelin sheath surrounding nerve cells (like multiple sclerosis), infection, or medication overdose.
There is no cure or specific treatments for locked-in syndrome. Supportive therapy for breathing and feeding is very important, especially early on. Physical therapy, comfort care, nutritional support, and prevention of systemic complications such as respiratory infections are the mainstay of treatment. While partial recovery of muscle control is possible, it is somewhat dependent on the cause. Speech therapists can help people with locked-in syndrome communicate more clearly with eye movements and blinking. However, electronic communication devices, including patient-computer interfaces such as infrared eye movement sensors and computer voice prosthetics, are allowing people with locked-in syndrome to communicate more freely and have access to the internet. Motorized wheelchairs have also increased independence.
Many people with locked-in syndrome do not live beyond the early (acute) stage due to medical complications. However, others may live for another 10-20 years and report a good quality of life despite the severe disabilities caused by the syndrome.
For more information, visit GARD.