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Abstract People with Parkinson’s disease (PD) are sensitive to effects of long-term stress, but might differ in stress resilience, i.e. the ability to maintain mental health despite adversity. It is unclear whether stress resilience in PD is predominantly determined by dopamine deficiency, psychosocial factors, or both. In PD animal models, chronic stressors accelerate disease progression, but evidence in humans is lacking. Our objectives were to (1) distinguish stressor-reactive from resilient PD patients, (2) identify resilience factors, and (3) compare symptom progression between stressor-reactive and resilient patients. We conducted a longitudinal survey in Personalized Parkinson Project participants (N = 350 PD). We used the COVID-19 pandemic as a model of a stressor, aligned in time for the entire cohort. COVID-19-related stressors, perceived stress, and PD symptoms were assessed at 11 timepoints (April-October 2020). Both pre-COVID and in-COVID clinical assessments were available. We quantified stressor-reactivity as the residual between actual and predicted perceived stress relative to COVID-19-related stressors, and modeled trajectories of stressor-reactivity across timepoints. We explored pre-COVID predictors of 6-month average stressor-reactivity, and tested whether stressor-reactivity was prospectively associated with one-year clinical progression rates. Latent class trajectory models distinguished patients with high (N = 123) or low (N = 227) stressor-reactivity. Pre-existing anxiety, rumination and non-motor symptom severity predicted high stressor-reactivity (risk factors), whereas quality of life, social support, positive appraisal style and cognitive abilities predicted low stressor-reactivity (resilience factors). PD-specific factors, e.g. disease duration, motor severity, and levodopa use, did not predict stressor-reactivity. The COVID-19 pandemic did not accelerate disease progression, but worsened depressive symptoms in stressor-reactive PD patients.

In our efforts to create more public awareness about Parkinson’s disease, we often emphasize the tremendous impact of this common disease on an individual’s life. However, in public awareness campaigns, we largely avoid discussions on the survival of people with Parkinson’s disease (PwP). Many clinicians even state that the survival with Parkinson’s disease is close to normal. In this article, we contemplate on findings regarding the mortality of Parkinson’s disease in order to spark a discussion about what information we should provide to affected individuals and their near ones about the life expectancy of PwP. Our narrative review of the evidence indicates that although the survival of PwP has improved over time, PwP still live fewer years than their age- and sex-matched population comparators, albeit at older ages this difference can be small. We feel that it is important to emphasize this information towards PwP, the general public, policymakers and funding bodies. We hope that this will help to create a better understanding of the enormous impact that this disorder can have on affected individuals, even beyond the disability that is experienced during life.