Meaningful life is possible in Locked-In Syndrome: The personal account of a survivor
Abstract
The locked-in syndrome (LIS) is a rare condition characterized by quadriplegia and anarthria, usually caused by a bilateral ventral ischemic pontine lesion. The patients are normally fully conscious but the only mode of communication is through vertical eye movements and/or blinking. Although the mortality is high, it has been shown that patients can actually survive for a significant period of time. Once a LIS patient becomes medically stable, and given appropriate medical care, life expectancy could increase to several decades. The LIS patients may suffer greatly if they are treated by hospital staff as nonresponsive. Medical professionals and lay people often assume that the quality of life of a LIS patient is so poor that it`s not worth living. However, the reported overall quality of life is not significantly different from healthy subjects. In this case report we describe a retired man, 60, living in locked-in state due to brainstem infarct. His personal account vividly reveals the inner thoughts, great deal of suffering, and the ability to cope with his condition through seven years of his illness. Early referral to a specialist rehabilitation service and strong social support from the family strongly influences the quality of life of the LIS patients. Even limited physical recovery can improve the quality of life and enable LIS patients to return to live with the family and become an active member of society.
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