Interacting With Persons Who Have ALS

Abstract

Individuals with amyotrophic lateral sclerosis (ALS) in later stages may rely on a variety of modalities to communicate. The current study used conversational analysis techniques to examine naturalistic face-to-face interaction between a man with late-stage ALS and his wife to understand the types of accommodations they made to ensure that successful meaning was established. Three extracts of talk were selected from a corpus of 30 videotaped interactions between a man with ALS interacting either with his wife or the first author of the study. The extracts were examined for the type of communicative resources used and the ways in which conversants worked together to maintain the temporal–sequential demands of in-person interaction. Conversants used a variety of communication modalities during their social interactions including voice, body, gestures, a speech-generating device (SGD), and the SGD screen to construct utterances for one another, establish meaning, and stay in-time. The pair were successful and maintained conversation expectations in many ways similar to those with nonimpaired voices and bodies. Conversations including an SGD are a highly coordinated and interactive affair that is experienced jointly by all conversants. In this study, the conversational partners were aware of, and sensitive to, the temporal–sequential demands of in-person interaction and the modality restrictions associated with SGD use. Clinical and device design recommendations are discussed.