Moving Beyond Words: Co-designing Artistic and Technological Avenues for Communicating Parkinson’s Disease Experience

What happens when the body’s messages cannot be conveyed in words? In Parkinson's Disease (PD), the discrepancy between lived and communicated experience creates relational gaps that impact social connection and well-being of people with Parkinson’s disease and their caregivers. This pilot study aimed to characterize the communication needs of Parkinson’s disease stakeholders, and to co-design non-verbal strategies for bridging experiential gaps. Interviews with people with Parkinson’s, informal care partners, and healthcare providers revealed complex challenges arising from stigma, relational factors, and intertwined motor, affective and cognitive aspects of disease progression. Participants highlighted the limitations of verbal communication across multiple contexts and described dream solutions to convey PD experiences in a multi-modal manner. Two non-verbal approaches were subsequently explored: 1) workshopping the SymPulseTM armband, an existing technology that simulates parkinsonian tremor; and 2) collaboration with a visual artist to develop “Envisagez l’invisible”, a portraiture activity that prompts reflection on the invisible aspects of PD. We detail the participatory process, report on preliminary user feedback, and share emerging challenges, reflections and strategies to guide future co-design.