The experience of living with Parkinson's disease

This phenomenological study examined the experience of living with Parkinson's disease. Data were collected from six individuals during open-ended interviews conducted in subjects' homes. Interviews were tape recorded, transcribed verbatim and then subjected to content analysis. Four themes emerged from data analysis. The experience of living with Parkinson's disease involved impact of the disease, dealing with the disease, maintaining independence and normality, and effort. Impact of the disease involved personal losses of mobility and social activity. The perceived loss of independence and normality resulted in a changed self-concept. Dealing with the disease involved specific strategies and resources such as health and social support. The goal which kept subjects going was to maintain independence and normality. The overriding theme was effort; effort was involved in every aspect of life with Parkinson's disease. Implications for nursing practice and research are discussed.