Occupational Disruption: Living with Motor Neurone Disease

Abstract

Little is known of the day-to-day experience of living with motor neurone disease from the perspective of those who have it, apart from what can be found in personal accounts such as those published on web pages. In this study, which was informed by phenomenology, seven people living in an urban setting in New Zealand were asked to describe their experiences. This report focuses on the study findings that related specifically to disruption to occupation. It describes how early changes in occupational performance alerted the participants to the fact that something was wrong. The findings also showed the pervasive impact of an awkward and unreliable body on participation in occupations that gave meaning to life, expressed identity and filled time. Issues of how the family's world was changed, the introduction of assistive devices into their homes and the betrayal of trust were also powerfully evident in participants' stories. Although the findings are broadly consistent with those of previous studies, the disruption to occupation and the consequent role losses are new findings. Further research into the impact of the loss of participation in occupation, the ways in which people are perceived when occupations are disrupted and the experience of having occupations taken away prematurely is recommended.