Facing and dealing with emotional turbulence: Living with newly diagnosed Parkinson's disease

The experiences of living with Parkinson's disease (PD) from the perspective of newly diagnosed persons with PD (PwPD) have not been previously described.

This study aimed to gain a better understanding of the impact of living with the early stages of PD.

A qualitative interview study was conducted among nine persons, seven men and two women, from southern Sweden. Participants had a median age of 71 (min-max, 64-77) years and had been diagnosed with PD for a median of 5 (min-max, 2-12) months. Interviews were recorded and analysed using systematic text condensation.

The analysis resulted in one core category, Facing and dealing with emotional turbulence, and four categories with 2-3 subcategories each: Something is wrong (Vague signs of change; Losing control); The going gets tough (Recalling; Lack of motivation); Losing direction (Uncertainties; Frightened of disease progression) and Dealing with life (Avoiding social situations; Hope and despair; Ease worries).

Newly diagnosed PwPD face emotional turbulence with increasing challenges in managing everyday basic needs. Impaired functioning affects self-esteem and identity, which calls for strategies to overcome emotional reactions of embarrassment, frustration and worry. A sense of lost control and direction increased as the future became more uncertain. The participants' emotional burden and struggle to find a reason to go on or some solution to their new situation left them with both hope and despair. Our results suggest that a person-centred needs-based approach may help newly diagnosed PwPD deal with their new life situation.