Feel the Rhythm: a co-constructed conceptual model of freezing of gait based on the lived experience of people with Parkinson’s

Abstract

Freezing of gait (FOG) is one of the most disabling symptoms of Parkinson’s. However, we understand little about lived experiences of FOG. The current study aimed to develop a new conceptual model designed to reflect the broad lived experience of FOG. In Phase 1 we carried out semi-structured interviews with 35 people with Parkinson’s and FOG. Participants described memorable freezes along with factors that they considered to influence, or be influenced by, FOG. We used inductive thematic analysis to identify themes that served as foundation for an initial conceptual model. Phase 2 was a 5-year long iterative process of Patient and Public Involvement and Engagement. Through discussion with over 250 people living with Parkinson’s, the conceptual model generated from Phase 1 was scrutinised and adapted to: i) provide additional context that supports the interpretation of findings from Phase 1 results; and ii) maximise the resonance of interpretations. Collectively, these processes highlighted the critical importance of one’s perceived sense of rhythm. Several themes describe ways in which perceived rhythm can be compromised either through requirements for adapting movement (Changers), distracting attention away from the intended movement (Distractors) or causing problems with gait initiation (Blockers). Other themes describe factors that promote the maintenance (Maintainers) or regeneration (Initiators) of rhythm to avoid FOG or break a freeze and start walking. Results also highlight the importance of Accumulated Experiences of FOG (e.g. altered perceptions of one’s sense of self and identity), and how these can amplify Rhythm Changers, Distractors and Blockers. Though Phase 2, a clear focus emerged on one’s perceived uncertainty about how planned movements will feel and associated shifts in attention towards vigilant monitoring and control of movements. We provide a detailed interpretation of study findings (relating to cognitive, emotional, sensory and motor processes) using a Predictive Processing Framework, followed by descriptions of practical implications for managing FOG and associated Accumulated Experiences.