Beyond the gaze: Communicating in chronic locked-in syndrome

Objective: Locked-in syndrome (LIS) usually follows a brainstem stroke and is characterized by paralysis of all voluntary muscles (except eyes' movements or blinking) and lack of speech with preserved consciousness. Several tools have been developed to promote communication with these patients. The aim of the study was to evaluate the current status regarding communication in a cohort of LIS patients. Design: A survey was conducted in collaboration with the French Association of Locked-in syndrome (ALIS). Subjects and methods: Two hundred and four patients, members of ALIS, were invited to fill in a questionnaire on communication issues and clinical evolution (recovery of verbal language and movements, presence of visual and/or auditory deficits). Results: Eighty-eight responses were processed. All respondents (35% female, mean age = 52 +/- 12 years, mean time in LIS = 10 +/- 6 years) reported using a yes/no communication code using mainly eyes' movements and 62% used assisting technology; 49% could communicate through verbal language and 73% have recovered some functional movements within the years. Conclusion: The results highlight the possibility to recover non-eye dependent communication, speech production and some functional movement in the majority of chronic LIS patients.