Jenn's Page

There are plenty of places I could have written this blog, but I decided to post it here because WEGO seems to be the most advocacy focused site I participate in.

Over the past month I have been getting a lot of questions about why I have been backing off from dystonia. At first I ignored the question. It seemed selfish for everyone else to be asking me why I dont dedicate my time to talking about my aches and pains anymore! I mean how was I suppose to take care of my family, myself and my sani… Continue

When I was in junior high, I read a book about a girl who following an accident lost her hearing. It was the classic teen drama. A popular 15 year old, with all the right friends, and all the right clothes with the perfect life. Then one day the unthinkable happens: she gets sick; really sick. At first her friends are there for her. Bringing her cards and candies and keeping her up to date on the latest school drama. But after a few months she doesnt get better. The girl is permanently deaf. Her… Continue

One of my friends coined this term as someone who hides the fact that they have dystonia, and I was definitely guilty. When my symptoms first progressed, I literally stayed in my house for a month because I didnt want people to stare at me.

Two months ago there was a dramatic change. I made the decision that I wanted to merge my modeling career with my efforts to raise awareness about dystonia. It was a very tough decision. Mostly because dystonia had made me feel unattractive, but I wasnt okay… Continue

When my dystonia spread earlier this year and I lost my mobility I had an important decision to make- what was I going to do now? I mean not really in the sense of how was I going to deal with day to day life.. I meant how was I going to accept this new found definition of me. I went to support groups, and read everything I could find. I avoided friends, slept all day, and stopped eating.

I was devastated for a few months. I felt like my life was over ... because my career was over... How so? W… Continue

I feel somewhat like a hipocrite and I want to address it. Today I was bent pretty badly mostly in my neck and upper back bending forward and towards the right.. In the same direction as the girl on the Oprah and Today show, but only maybe 30% as far. I normally have problems with my lower back muscles and foot and have a small limp and use a cane.

Well today, I was needed to run an errand... and my father, and avid supporter of my efforts to spread the word about dystonia proceeded to introduc… Continue