“Think positively”: Parkinson’s disease, biomedicine, and hope in contemporary Germany

Abstract

Narratives of hope shape contemporary engagements with Parkinson's disease. On the one hand, a "biomedical narrative of hope" promises that biomedical research will help to transform this treatable but incurable disease into a curable one in the future. On the other hand, a more individual "illness narrative of hope" encourages patients to influence the course of Parkinson's disease by practicing self-care and positive thinking. This article asks how these two narratives of hope interact. It bases its argument on an analysis of data from 13 focus groups conducted in Germany in 2012 and 2014 with patients with Parkinson's disease and their relatives. Participants were asked to have their say on clinical trials for advanced therapies for Parkinson's disease and, while doing so, envisioned their biosocial selves in the present and the future. Three "modes of being" for patients were drawn from this body of data: a "users on stand-by" mode, an "unengaged" mode, and an "experimental pioneers" mode. Both narratives of hope were important to all three modes, yet they were mobilized at different frequencies and also had different statuses. While the biomedical narrative of hope was deemed an important "dream of the future" that participants passively supported without having to make it their own, the illness narrative of hope was a truth discourse that took an imperative form: having Parkinson's disease implied the need to maintain a positive attitude.

Hopamine as Personalized Medicine for Persons with Parkinson’s Disease

“…They hope to live to see the day when the relentless disease progression is stopped, reversed or when better symptomatic support is available for each affected person in the world. But this biomedical narrative of hope [ 5 ] inevitably is and remains the perspective of the doctor. Sooner or later, people with Parkinson’s disease will need to develop their own personalized hope narratives, with ingredients they can feed themselves on a daily basis.…”

“…It is exactly because the outcome of everyone’s Parkinson’s journey is uncertain that people will need a personalized recipe of hopamine to self-manage their life and to deal with an uncertain future with Parkinson’s disease. For medical professionals, learning to be at ease with such uncertainty is essential to let hope grow [ 5 ]. Sitting back, tuning in, and fostering curiosity is needed in the communication styles of health care professionals to understand personalized guidance which different persons may need to access their individual resources and draft their individual hopamine recipe.…”

Ethics as ritual: smoothing over moments of dislocation in biomedicine

“…). Consequently, biomedical scientists feared the potential dislocation of ‘biomedical narratives of hope’ (Metzler and Just ). For example, interviewee 18 was worried that a forthcoming media article about her research on genetic mutations in colon cancer patients might be susceptible to a negative spin if journalists linked the technique she was using (genome sequencing) to the public debate on detecting Down syndrome in embryos.…”

Patient narratives of hope in stem cell technologies: Trust in biomedicine and the body’s natural ability to heal itself

“…This research describes two narratives of hope: the biomedical and the individual. A biomedical narrative is premised on a person’s trust in the eventual efficacy of biomedical innovation (Metzler and Just, 2018). The biomedical narrative is characterized by a fundamental, sometimes taken-for-granted belief that biomedical treatments will yield beneficial—even curative—results in the future, regardless of when that future might arrive (Moreira and Palladino, 2005; Petersen and Seear, 2011).…”

“…Scholars have also articulated an individual (or illness) narrative in contrast to the biomedical narrative (Metzler and Just, 2018). The individual narrative is characterized by a person’s belief that they can improve their health condition through individual effort, either through affective or behavioral measures (Delvecchio Good et al, 1990; Petersen et al, 2015); for example, “practicing self-care and positive thinking” (Metzler and Just, 2018: 484).…”