Objective: To explain what types of respiratory dysfunction people with Parkinson’s disease and atypical parkinsonism experience and how these symptoms impact their daily life.

Background: Respiratory dysfunction is an underestimated feature in both typical and atypical parkinsonism. Alterations in respiratory functions are already found early in the disease, but less is known about how they progress towards pneumonia and how they impact on daily life.

Method: A qualitative study, using a constructive, interpretative grounded theory approach according to Charmaz 2000 was conducted. Data was collected by semi-structured interviews among 14 participants diagnosed with Parkinson disease or atypical parkinsonism and reporting respiratory problems.

Results: Four key themes emerged describing the types of respiratory dysfunction and their impact on daily living: First, a loss of breathing automatism was experienced leading to feelings such as helplessness and frustration. Conscious breathing strategies sometimes successfully compensated for this loss. Second, episodes of breathlessness or a rapid, shallow breathing pattern were triggered by physical activity, fatigue, stooped posture, stress and anxiety. It disturbed sleep, speech and a wide range of social activities. Medication sometimes triggered breathlessness and a rapid, shallow breathing, where it leaded to improvements in others. Third, stress and anxiety triggered episodes of breathlessness, rapid shallow breathing or increased coughing leading to feelings of restlessness and to a loss of independency. Fourth, an increased frequency of coughing was found due to an increased sensitivity or to clear phlegm. Coughing was experienced as disturbing and unhygienic leading to avoidance of social activities.

Conclusion: Respiratory dysfunction was described as a loss of breathing automatism, breathlessness and a rapid, shallow breathing pattern. There was an interaction with stress and anxiety and conscious breathing strategies sometimes compensates for the loss of breathing automatism. Medication sometimes improved breathlessness and rapid, shallow breathing and sometimes worsened. Respiratory dysfunction had a large impact as it leaded to feelings of discomfort and contributed to disturbed sleep, communication problems and the avoidance of many social activities.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/the-experience-of-respiratory-symptoms-and-the-impact-in-daily-live-in-patients-with-parkinsons-disease-a-grounded-theory-approach/