Patrick was in the prime of his life; he was a student-athlete and captain of his water polo and swim team. Four days after he attended his senior homecoming dance, Patrick suffered a massive stroke to his brain stem. After surgery, Patrick was diagnosed with Locked-in Syndrome (LIS). It is medically defined as having lost control of all purposeful movement other than your eyes/eyelids. Popular literature refers to it as being “buried alive.”
He cannot swallow. He cannot call out for help. He cannot move a single muscle. He cannot kiss someone he loves. He cannot taste his favorite food. He can: smile, silently laugh, understand, feel pain, happiness, frustration and anger. He can dream, concentrate, learn, make other people laugh and make other people cry.
Patrick’s mind is 100% intact. He is currently taking college courses and communicates by blinking the letters of the alphabet.
All in my Head, Inc. represents fearless athletic spirits whose mental resilience trumps their physical limitations, specifically locked-in syndrome and paralyzation. We do this by telling visual stories in true, compelling, energetic, athletic and empathetic ways.
UNDERSTANDING LOCKED-IN SYNDROME
What is Locked-In Syndrome?
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. It may result from traumatic brain injury, diseases of the circulatory system, diseases that destroy the myelin sheath surrounding nerve cells, or medication overdose. Individuals with locked-in syndrome are conscious and can think and reason, but are unable to speak or move. The disorder leaves individuals completely mute and paralyzed. Communication may be possible with blinking eye movements
Is there any treatment?
There is no cure for locked-in syndrome, nor is there a standard course of treatment. A therapy called functional neuromuscular stimulation, which uses electrodes to stimulate muscle reflexes, may help activate some paralyzed muscles. Several devices to help communication are available. Other treatment is symptomatic and supportive.
What is the prognosis?
While in rare cases some patients may regain certain functions, the chances for motor recovery are very limited.
What research is being done?
The NINDS supports research on neurological disorders that can cause locked-in syndrome. The goals of this research are to find ways to prevent, treat, and cure these disorders.
NIH Patient Recruitment for Locked-In Syndrome Clinical Trials
Find more from the National Institute of Neurological Disorders and Stroke