Living with Parkinson’s Disease: Sociological Perspectives on Older Australians’ Narratives

Parkinson’s disease is a chronic illness generally associated with biological processes of ageing in later life; increased longevity suggests that the prevalence will increase with population ageing. The dominant discourse on Parkinson’s disease is a medical one and very much framed around diagnosis and treatment. In this context, the body-self and external environment are partitioned off and not recognised as part of the ‘disease’, therefore little attention has been given to the socially constructed meanings of living with Parkinson’s put forward by people diagnosed and their partner-carers. The objective of this qualitative study was to understand the lived experiences of Parkinson’s disease from these two different perspectives; embodying the illness and caring for another body in illness.

The data included here are from focus groups (n=6) and individual interviews (n=18) carried out in the Sydney metropolitan area with people diagnosed with idiopathic Parkinson’s disease and their partner-carers. Participants’ narratives evidence the ways in which, outside of the clinical setting, the simultaneous process of ageing and living with this chronic illness affects their physical, social and emotional wellbeing. At the same time, narratives illustrate the often creative and productive ways that participants mitigate the physical and emotional suffering and loss experienced in living with Parkinson’s disease.

The findings demonstrate that, for health professionals and policy makers, a more nuanced framework is needed to move beyond the clinical understanding of Parkinson’s disease as a movement disorder. That is, one that provides an interpretation and understanding of the diversity and complexity of the lived experience of Parkinson’s disease and its intersection with the ageing process, and also how the person embodies, sees and experiences life with Parkinson’s disease, and the partner-carer sees themselves implicated in their partner’s illness.