Locked-In Syndrome
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More about Locked-In Syndrome . . .

As the result of a brain stem stroke in 1993, John E. Andrist was diagnosed with a rare disorder called Locked-in syndrome (LIS). The patient's mind is virtually "locked" inside a body that cannot move or communicate. It is sometimes referred to as "ventral pontine syndrome," a conscious quadriplegic state in which voluntary movement is limited to vertical eye movement and perhaps eye blinks.

The condition was recognized medically relatively recently. The first article about it in a medical publication was in 1966. There are documented instances of people who suffered from LIS but were misdiagnosed as being in a "vegetative" state. An especially compelling account is in the book, "Look Up for Yes," the autobiography of Julia Tavalaro, who lay, virtually ignored, in an institution for many years until a speech therapist realized she was conscious.

Cerebrovascular disease and basilar artery stroke, typically in the brainstem, are the most common causes of locked-in syndrome. A second cause is trauma to the brainstem.

The journal, "Communication Technologies for the Elderly," describes the "typical" course of LIS: "a sudden onset from either a stroke or trauma followed by a period of gradual recovery and later stabilization." Characteristics include quadriplegia, ventilator dependency, inability to speak, normal or near-normal cognition, visual impairment such as blurring or double vision.

This can happen to young people and old, men and women. Only a few, limited studies have been done with LIS patients. The National Institutes of Health states there is no cure nor standard course of treatment. "The prognosis for those with locked-in syndrome is poor."

We believe this is self-fulfilling prophecy. People with LIS are wrongly given up as hopeless cases. As the wife of one young LIS patient said, her husband was released from the hospital with the expectation that he would simply lie in bed until he died. But with therapy, he has been regaining function. 

The stories of LIS patients indicate that their prognosis is as individual as they are. Who knows? Many have regained an impressive amount of function. Others live meaningful, fulfilling lives with the help of augmentative communication technology. John was fortunate to work with skilled, optimistic therapists after his stroke. We learned it's never too late. His body continued to heal throughout the 14 years after his stroke. Every year he regained strength and function.

Despite his extraordinary limitations, John counted himself fortunate and "lucky to be alive."

-- Mary Koch

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John E. Andrist enjoys a wheelchair hiking trail in the Okanogan National Forest