Impact of the Graphic Memoir My Degeneration: A Journey Through Parkinson's on Patients With Parkinson's Disease: A Mixed Methods Study.

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.