I know exactly what you mean. It's grief about losing a part of your life. And your identity. It's very hard to accept that loss. There are so many things I can't do. My head also shakes. Jerks, they call it. Jerks indeed. Going to a restaurant or the movies is impossible for me. But also visiting the neighbor and have coffee I can'r really enjoy cause, like you, I always have to hold my head. Sometimes I look at pictures of myself before this started and think: 'I had peace then.'. You take it for granted that you have control over your neck muscles. That's all gone. Do you find ways to lessen the tension of the muscles? I usually tell people about my dystonia right away. I never cried about it. I wish I could. I hate to see pictures of myself. I don't want the dystonia te become my identity. Do exercises or physiotherapy help you? ❤ from Amsterdam.
@MindfulRecycle Жыл бұрын
Hi Anton, what kinds of treatments have you tried so far for your CD?
@Dystoniac1 Жыл бұрын
Botox x 3, baclofen, artane, diazepam, strong pain killers. How about you?