Observations

May 10, 2010

I have tried to remain positive in regard to my dystonia and me. I like to think that I let dystonia be a part of my life but it doesn’t define who I am. I have met others though who let dystonia rule their lives.

I think my outlook towards it is differently than others because I have had it for over half my life. Don’t get me wrong I am not happy to have it. On a daily basis I have to deal with people who assume the incorrect thing. I have learned to deal with the second looks, people saying ‘yeah’ when your talking to them but they aren’t listening and┬ápreconceived thoughts about those with disabilities on a daily basis.

I am far from ‘happy’ to be dystonic and on disability but there isn’t anything I can do about it. I would like others with dystonia who let it define them to try and not let it.

I hope sometime in the future there will be a cure.

Dystonia Advocacy Day

May 6, 2010

On May 5th we had an annual Dystonia Advocacy Day in DC. There were 120 people who went – the biggest group yet. Teams were made based on geographic location and they met with several members of the house/senate or their aids.

For me I love events with a large number of people with dystonia. It lets me be me and not worry about others. Its like being in a large group of people who understand what is going on and its pretty cool.