Unlocking the locked in; a need for team approach in rehabilitation of survivors with locked-in syndrome

Abstract

Objectives: A stroke that affects the medulla oblongata and/or pons can result in tetra pareses and paralysis of the lower cranial nerves while other parts of the brain remain intact, thus locking the person in. The incidence and prevalence is not known. The aim of this article is to communicate the need for and benefits of a comprehensive rehabilitation and a standardized way of approaching the locked-in person.

Material and methods: To illustrate the rehabilitation process, we present four cases to highlight the needs of the person and what is required of the team.

Results: Communication at arrival: three persons communicated through eye movement, one by weak voice. At follow-up (1-6 years later): computer assisted communication was used by two persons, a letter board by one and 'ordinary communication' by one.

Conclusions: There is a need for follow-up not only to re-assess skills and needs partly owing to new technologies but also to see whether the person needs more assistance to adapt to the alternative means of communication or whether the carers of the person need extra information about communication. We conclude that the low incidence of the syndrome necessitates a skilled team in which different professionals can together assess the person. This probably requires some centralization.