Introduction: Understanding the lived experience of illness is important for empowering patients and informing health care practitioners. This study investigated the impact of a book-length comic memoir, My Degeneration: A Journey Through Parkinson's, by Peter Dunlap-Shohl, on patients' mental health, knowledge, and attitudes about living with Parkinson's disease (PD). The authors further explored which patients found the book to be beneficial and why.
Methods: In this convergent mixed methods study, patients with PD were recruited from a multidisciplinary movement disorders clinic in 2019-2020 and were eligible if cognitively intact; English-speaking; had stage I, II, or III PD; and < 12 months had elapsed since diagnosis. Participants received My Degeneration to read at home, measures were obtained pre- and postintervention, and participants were interviewed within approximately 1 month.
Results: Thirty participants completed the study (13 males and 17 female; mean age = 59 years). Four qualitative themes emerged: Reading My Degeneration 1) validated the experience of living with PD, 2) reinforced practical behaviors that support well-being, 3) provided insight about the illness experience, and 4) was emotionally and physically taxing. There were no statistically significant pre-/postintervention changes in knowledge, self-efficacy, hope, or emotional distress. Book "endorsers" appreciated Dunlap-Shohl's dark humor and resonated with his experience; "detractors" found the book to be blunt and sometimes frightening.
Discussion/conclusion: Participants who liked the book-the "endorsers"-revealed that it deeply resonated with them and helped them realize they were not alone with the disease. Many commented that Dunlap-Shohl's story was in some ways their story-and that this was both practically and emotionally reassuring. My Degeneration has the potential to benefit patients who appreciate comics, enjoy dark humor, and are not overly pessimistic.
Keywords: Comics; Graphic Medicine; Parkinson’s Disease; patient experience; quality of life; visual communication.