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The most devastating aspect of amyotrophic lateral sclerosis (ALS) may not be the loss of mobility or spontaneous respiration but the inability to communicate. For people with ALS who elect mechanical ventilation, the inexorable disease progression can lead to an incomplete locked-in syndrome (LIS)1,2 and then to a total LIS where neither eye movements nor any other efferent capacity remains. The moment that occurs, consciousness undoubtedly persists, but for an unknown period of time. In some cases, years later, family members maintain that their loved one is communicating by changing pupil size or pulse rate, or just a look in the eye. The dispassionate physician remains uncertain, perhaps believing that consciousness requires not just an internal dialogue but also observing the results of thoughts or actions. Others may quietly hope that consciousness cannot survive extended periods of immobility, unannounced and unmitigated discomfort, and complete disconnection.
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- © 2014 American Academy of Neurology
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