(Re)negotiating normal every day: Phenomenological uncertainty in Parkinson’s disease

Parkinson’s disease is the second most common neurodegenerative condition globally, yet its most defining characteristic is its idiopathy. Those who are so diagnosed vary widely from others with the same diagnosis in terms of their bodily signs, symptoms (both motor and non-motor), response to treatment and management, and the speed of disease progression. Such fluctuations occur not only between individuals with Parkinson’s, but also more profoundly within individual experience. For many, the day-by-day is unpredictable. Living a good life, therefore, requires a constant internal negotiation, in which the embodied experience of Parkinson’s forces a daily reconciliation of the who will I be with how do I feel and what can I do. In this chapter, we draw upon longitudinal research to examine the ways in which Australians living with Parkinson’s disease manage the uncertainty, and the resultant disruption, which characterises their everyday experience, and consider the role of resilience in these negotiations.