Meaningful life is possible with locked - In syndrome the personal account of a survivor

Abstract

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