Thursday, March 31, 2016

Thoughts About Dystonia

Hey Readers, 
This post is going to be short because I have been working on my website which requires a lot of typing. 

I did win the award from the Dystonia Medical Research Foundation. It's for young advocacy. I get the privilege of going to Washington D.C. and receiving the award. I am so excited! Mom, Dad, Genevieve, and I are all going next month.

It's interested because I feel like very close to a cure for Dystonia. My feelings about Cerebral Palsy and Dystonia are extremely different. I get frustrated with Cerebral Palsy because I don't think a cure for C.P. will happen in my lifetime. It's frustrating because I want a cure! I don’t want to go to therapy all my life. However, I know therapy is a lifelong reality. I can motivate myself by doing walks like the Easter Seals Fun Run but that doesn't equate to driving myself to the grocery store. Big difference!  

On the flip side, curing Dystonia is a reality. I have a strong desire to contribute to the cure. People like Michael J. Foxx are my inspirations for advocacy efforts. Mr. Foxx did not disappear when his Tourette Syndrome flared up. He faced it head on. I would love to meet that guy because we are both on the same page. 

From a medical standpoint, I could be in a trial experiment. I really wouldn't hesitate. The person who would hesitate is my neurologist. He would not experiment with my quality of life. I can't blame the guy. My parents are right in the middle of our viewpoints. They are always curious about the research being done but nobody wants to experiment with the quality of life I have right now. 

I'm really excited about getting the award and I hope to God that I get a job. I'm going crazy without a job. I'm staying busy but I wake up without a sense of purpose and that's difficult. I think working for any organization that needs a voice would be amazing!

I'm going to the new condo this weekend with my parents to visualize the changes we're making. The three of us have been e-mailing every day with ideas. My parents are kitchen designers so we have tons of decisions to make. Mom and I are constantly sending each other decorating ideas on Pinterest. It's so much fun!

I mentioned it earlier but the Easter Seals walk is coming up and if you would like to donate, please go to: If you did donate, THANK YOU!

I'll tell you about D.C. next month and if I get a job (or you know of something), I will be the happiest woman on earth! 


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