The physical experience of movement disorder can be awkward, uncomfortable, stressful, frustrating, even embarrassing…all of which tend to exacerbate symptoms, a vicious cycle. Sometimes the only way to cope is to find humor in the situation.
This blog is an invitation into my world for a topsy-turvy ride replete with involuntarily contracting muscles caused by a gene named DYT1 that messes with a protein called Torsin A. In my peculiar game of Twister, the spinner’s out of control: left leg blue–red–yellow (perhaps even purple, off the board!), right arm green–no–red, right leg yellow–blue–green, left arm red–wait–blue. All my limbs are active players, some with feature roles.