M – Interview 19  

M – Interview 19

Age at Interview: 39
Sex: Male
Age at Diagnosis: 16
Background: M is married with one child and is self-employed. Ethnic background/nationality: Jewish

Brief outline:M was diagnosed with torsion dystonia at 16, five years after developing an unusual gait. As treatment M underwent Deep Brain Simulation, which initially was not successful. With a second opinion, the electrodes were repositioned resulting in more success.

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M explains how torsion dystonia affected him physically and how he started to walk backwards.

 



The gait was... when I looked at the letter from, from Professor A yesterday, he said, “Your gait will deteriorate, and you will be able to walk albeit it in a very bizarre way.” And I think that’s the best description. It’s a very bizarre way. It’s just walking with involuntary movement of the legs and the arms, and the trunk. It’s just all over the place, it’s shambolic. You can hardly describe it as a walk, it is like a jellyfish kind of trying to walk. It’s quite, I wouldn’t say, I’m not quite sure. I actually provided a short video of my gait, pre and post-op. If you’re interested in that obviously it’s really hard to describe in words but it’s quite dramatically odd. 
 
One of the odd things about this condition is that, I could easily walk backward. But the second I walked backward, it was as if this condition only kicked in when I was in forward gear. As soon as I put in reverse, it’s almost like vanished. Well I wouldn’t say vanished, but I could walk backward, much better than I could walk forward. I remember going for a walk once in [town] area, with L and her family down there. And I remember walking for miles backward, it’s extraordinary but it’s true, walking backward was much easier. 
 
And I’m not the first person, when I mentioned it to the neurologist, he said, “You’re not the first person to mention it.” Absolutely no explanation or suggestion why. Why this condition kicks in a certain pattern of movement and not in others. But that’s the way it is. Even in the house I used to walk here to there, I used to walk backwards, before the second op. 
 

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