The Experience of Living with Deep Brain Stimulation: Patients’ Narratives of Young-Onset Parkinson’s Disease

Abstract

Abstract Young-onset Parkinson’s disease is a complex neurodegenerative disorder that causes a variety of problems in patients’ lives. Although there are drug therapies, some patients proceed to deep brain stimulation surgery, which is the most effective symptomatic treatment. DBS consists of a pacemaker that sends electricity to implanted electrodes in the brain to restore a wide range of bodily, emotional, and social functions, contributing to quality of life. Apart from its medical dimension, DBS raises social scientists’ interest and opens discussion of posthumanism. Critical posthumanism sets the ground for problematizing dualisms and mitigates polarities between human and nonhuman, health and disease. This article explores how patients perceive time, health, and disease and the role of machines in their lives. Patients’ narratives imply that living with DBS causes multiple biographical disruptions. However, it is evaluated positively, as it offers patients the chance to gain control of their lives and creates a safe space in which the self can be perceived even among disruptions; embodied experiences previously interpreted as symptoms, are now perceived through an asymptomatic, but still “diseased,” way of living that recalls the human nature of a machine-directed life.