Controlling the Uncontrollable: Perceptions of Balance in People With Parkinson Disease

Background. Exercise improves balance in Parkinson disease (PD), yet the majority of people with the diagnosis are physically inactive. Insights gained from understanding how people with PD (PwPD) make sense of their symptoms and their ability to control them may inform the communication strategies and motivational approaches adopted by physical therapists. To our knowledge, no previous study has qualitatively explored how PwPD perceive the concept of balance and the beliefs they hold concerning their ability to affect balance. Objective. This study aimed to explore the meaning of balance for PwPD and the beliefs they hold regarding their ability to influence their balance in everyday life. Design. The design was a qualitative study with an inductive approach. Methods. In-depth interviews were conducted with 18 participants with PD (age range 46-83 years, Hoehn and Yahr range 1-4), and transcripts were analyzed using qualitative content analysis. Results. Five main themes emerged from the analysis: remaining in control over the body, adapting behavior to deal with uncertainty, directing focus to stay 1 step ahead, resilience as a defense, and exercise beliefs and reservations. Interpretation of the underlying patterns in the main themes yielded the overarching theme of focus and determination to regain control over shifting balance. Conclusions. The concept of balance was perceived as both bodily equilibrium and mind-body interplay and was described in the context of remaining in control over one's body and everyday life. Cognitive resources were utilized to direct focus and attention during balance-challenging situations in a process involving internal dialogue. Even participants who did not express beliefs in their ability to affect balance through exercise used psychological resilience to counter the challenges of impaired balance.