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 feels out of his comfort zone when meeting strangers as he worries that they might not see the person behind the disability.

 



Did you say anything to people when you were out if they were staring at you?
 
Did I say anything? Not to... obviously my friends, and like my friends from the Kibbutz or from the Army, anywhere I travelled, they knew, I told them there was a neurological condition. It’s quite obvious there is something wrong so it’s not something that you can hide. But I didn’t wear a shirt saying, you know, because I’ve got dystonia; so forgive me because of the dystonia.
 
And you said it was when you left the Kibbutz you felt more disabled because within that environment people knew who you were and had grown up with you, finding out about this diagnosis.
 
I’m not sure I felt more disabled. But I felt more, well outside of my comfort zone because there was no question, that people... if you see the condition as it progresses slowly, gradually, beginning from perfectly able young boy to a relatively weak young, well 18 year old with some odd gait. It’s a long progress, it doesn’t happen overnight, so, there’s no questions asked. So it’s just grows, just like watching a tree grow. You don’t one day notice you’ve got a tree in the garden but when you go outside, you do, there’s gap that you have to compensate for which is under this superficial appearance there is me. And this gap has to be overcome every time you meet a new person.
 
So, it wasn’t like I felt more disabled, physically disabled as before, it was the interaction that was slightly more difficult with strangers. 

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