“A whole day, I might not say a word”: Responses to the Pandemic by People with Parkinson’s

Background: The widespread SARS-CoV-2 or COVID-19 virus accounted for approximately 2.5 million deaths worldwide. Parkinson’s Disease (PD) is a progressive movement disorder of the central nervous system in which the loss of dopamine results in motor and nonmotor symptoms. Stress can exacerbate PD symptoms. The purpose of this study was to examine the lived experiences of persons with Parkinson’s disease during the COVID-19 pandemic. Research Question: The research question, “what is it like to live with Parkinson’s Disease during the COVID-19 pandemic?” guided this study. Examining the subjective lived experiences and meanings of living with PD during the COVID-19 pandemic will advance nursing science by providing insight into the long-term effects as well as the care and services needed to improve patients’ health and well-being. Methodology: This study employed a phenomenological approach to examine the subjective lived experiences and meanings of living with PD during the COVID-19 pandemic. A sample of 14 participants with PD were interviewed. Colaizzi’s seven steps were used for data analysis and methods to ensure trustworthiness were employed. Results: Three themes emerged: (1) pandemic effects, (2) adaptations, and (3) stress and coping. Categories representing the pandemic’s effects included restrictions, the effects of restrictions on physical and mental health, and precautions. Categories representing adaptations included being intentional about contact, activity adaptations, and relocation. Categories representing stress and coping included stress effects, coping, and stress and the pandemic. Limitations: This was a small homogeneous sample. All were white and educated individuals, recruited from two service organizations in Texas, and unaware of their PD staging. At the same time, everyone with PD experience different symptoms and stress responses creating heterogeneity. Conclusion and Recommendations: Based on the findings of this study, a holistic assessment should be conducted during routine visits with people with PD. Nurses and other health care professionals should be aware that a pandemic may have a holistic effect on the well-being of persons with PD necessitating assessment beyond the classic symptoms of tremor, bradykinesia, rigidity, and postural instability.