Perspectives on walking from people with multiple sclerosis and reactions to video self-observation.

Purpose: People with multiple sclerosis (MS) rank walking among the most challenging aspects of their condition. A greater understanding of people's perspectives concerning their walking may help to prioritize walking outcomes and strategies for optimizing walking. The purpose was to explore perceptions of walking in people with MS and to describe their reactions after observing themselves walk on video. Materials and methods: An interpretive thematic analysis study using face-to-face, semi-structured interviews was conducted with 14 people who self-identified a change in their walking due to MS. Participants were video-recorded walking and watched their video during the interview. Results: Four themes were identified: "awareness," "acceptance," "constant change," and "increased effort." People with MS develop awareness of how their walking performance looks and awareness of constantly-changing internal factors and external factors which impact their walking. Awareness of change in fatigue, temperature, terrain, and the use of aids in particular are perceived relevant to walking and to impact the effort required to walk. People with MS also describe differences in their acceptance of how others view their walking and the changes related to walking. An analogy with a marionette performing describes how people perceive walking as no longer automatic; instead walking requires the person to consciously pull the strings to walk. An increase in both the physical and cognitive effort is required to walk and an awareness and acceptance of a variety of changes in oneself and the lived world may help or hinder walking. People with MS are willing to watch themselves walk on video and are not surprised by what they observe. Conclusions: People with MS develop a learned self-awareness with variable levels of acceptance about their walking function and what it looks like. The perceptions on walking from persons with MS suggest that focusing on reducing the effort to walk and minimizing the constantly-changing variables may help to optimize walking.