Narrative medicine pinpoints loss of autonomy and stigma in Parkinson's disease

Abstract

Parkinson's disease characteristics can create a self-perceived sense of stigmatization and disapproval by others, thereby affecting self-perceived autonomy. This study investigated the metaphors related to the loss of autonomy and stigma in stories and drawings of Parkinson's disease. We compare a contemporary first-person illness narrative and -drawing from a person with Parkinson's disease, with two novels (Jonathan Franzen's The Corrections and Claudia Piñeiro's Elena Knows), a graphic novel (Peter Dunlap-Shohl's My Degeneration: A Journey Through Parkinson's), a non-fiction book (Oliver Sacks' Awakenings) and a first-person illness narrative (John Palfreman's The Bright Side of Parkinson's). Metaphors in the patient narrative, novels, and non-fiction work were reviewed and a list of themes or categorizations common to 2 of the metaphors was generated. Parkinson's disease metaphors indicate a 'Parkinson's prism' thereby depicting extreme experiences (24.4%) like a 'fall by mischance', a 'tantrum of selfish misery' or a 'bottomless darkness and unreality' (Table 1). Both novels signify a sense of 'betrayal and disconnection' in the Parkinson's disease experience while non-fiction of Parkinsonism depicts a space in which one feels 'caged and deprived'. This makes the Parkinson's disease narrative a chaos story that could influence the decision to initiate treatment and treatment adherence. We conclude that narrative medicine can help to focus the medical consultations with affected individuals on issues that matter most to them, thereby improving self-perceived autonomy and stigma. As such, it is a critical component of the much-needed move towards personalized medicine in Parkinson's disease, achieved through the reciprocity of thinking with stories.

Fig. 1. Drawing depicting the Parkinson’s disease experience.

A Visual representation of the Parkinson’s disease experience as provided by the interviewed person with Parkinson’s disease (W.B.) who imagined himself to be a ball of wool made up of many different colored strings. These strings each represent a connection in his being as a person related to self-perceived autonomy and the world around him. B Following Parkinson’s disease these connections were being torn apart, represented in his illustration as the strings being spread chaotically across the floor.

Fig. 2. The ‘Parkinson prism’.

The ‘Parkinson prism’ is a metaphor that demonstrates how disease and medication alter a person’s ability to make sense of a distorted and parous reality. Image derived from the graphic novel My Degeneration: A Journey Through Parkinson’s by Peter Dunlap-Shohl.

Fig. 3. Fall by mischange.

The damage inflicted by Parkinson’s disease is a reminder of how far we can fall by mischance. Image derived from the graphic novel My Degeneration: A Journey Through Parkinson’s by Peter Dunlap-Shohl.