Living with muscular dystrophy: Personal reflections

With the growing interest in day-to-day measures of value to patients, it may be of help to understand what goes through the minds of those who live with dystrophy every day. We don’t think about 6MWT or the density on an MRI. It is much more practical than that. It is falling, broken bones, struggling to breathe, watch- ing one ability after another vanish. As a scientist, I think in equa- tions, models, variables, and predictability. I want to, and can, describe dystrophy in this sort of sterile way. I do think about dys- trophy that way. But, I feel it very differently as I watch one muscle after the other decay and vanish.

Living with muscular dystrophy Personal reflections