Hi Kelly,It's difficult to know what to expect as everyone is affected differently. I've had dystonia since I was a baby so I can only tell you what I went through, but don't despair as things are very different now for people. I wasn't diagnosed until I was about 13/14yrs old. Up until 12 my dystonia meant that I was completely dependent on other people doing things for me. I couldn't walk, talk properly, eat, chew or swallow properly. I was having extremely painful spasms every day, and I was so tired too. Then when I was 12 I was put on Sinemet which changed my life. Until then, my mum thought I was actually going to die from whatever it was I had, as I was just getting worse. Once I started Sinemet I was a changed person. My speech improved, I could do more for myself, I could eat properly and the tiredness eased. However, I was still unable to walk and I did still get tired, so I still had to use a wheelchair (and do to this day). This has never stopped me from doing anything though. Even at my worst, my mum didn't wrap me in cotton wool. She encouraged me all the time, she let me do things and was never over-protective, even if she did worry! I'm now 38, a qualified youth and community worker, I live on my own with the support I need, I drive, do voluntary work, go on holidays and generally live a relatively good life. So having dystonia doesn't necessarily mean you can't do things. My brother also has dystonia, affecting his left foot, but the sinemet has meant no one would know he had it! He got his degree in analytical chemistry with toxicology, is working as a chemist, and is married with a 3yr old daughter! So, it really depends on how your body takes to meds or ops. We have the same diagnosis but are affected in different ways. However, we have both done completely different things and are both very happy with our lives. So try not to think too much about what your son can't do. All you can really do is encourage him in whatever he feels comfortable doing.
I apologise for rambling on and on!!!
Akasha
