Locked-in syndrome: We don’t know much about the mental health of people who are fully paralyzed yet conscious

Kerstin Wirth, who suffers from LIS, participates in a clinical trial. Credit: BBC
Kerstin Wirth, who suffers from LIS, participates in a clinical trial. Credit: BBC

In 1993, Julio Lopes was sipping a coffee at a bar when he had a stroke. He fell into a coma, and two months later, when he regained consciousness, his body was fully paralyzed.

Doctors said the young manโ€™s future was bleak: Save for his eyes, he would never be able to move again. Lopes would have to live with locked-in syndrome, a rare condition characterized by near-total paralysis of the body and a totally lucid mind. LIS is predominantly caused by strokes in specific brain regions; it can also be caused by traumatic brain injury, tumors, and progressive diseases like amyotrophic lateral sclerosis, or ALS.

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Because LIS syndrome is rare, surveys of patients tend to be small, making it difficult to draw firm conclusions. Still, the vast majority of studies point in the same direction: A majority of locked-in patients are relatively happy. One early study, published in 2002, found that of 44 LIS patients, almost half reported their mood as good while 13 percent reported feeling depressed. A later study, published by [neurologist Steven] Laureys and his colleagues in 2011, found that of 65 patients, just over two-thirds considered themselves happy while less than one-third said they were unhappy. Seven percent of all patients expressed a wish for assisted dying.

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