My story of becoming a Robot – Bravelets

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My story of becoming a Robot

Posted on February 09 2012

I fell apon this website and would love to have my orphan rare neurological disorder added. To people, when briefly explaining Dystonia, I say it is if Parkinson’s and MS had a baby. There are some known causes and some “who knows” and there is no cure.My story of becoming a RobotAt age 24, after Grad school, I had my first grown-up “J-O-B” and loved it. I bought a house and a new car and was a busy busy bee from work to home. People wondered how I could do so much. At age 30, I met my soul mate and we had about 2 months of dates before I noticed symptoms. It just started as a numb patch on my lower right leg. I though high heels were the problem but as the numbness moved up, I went to the Neurologist. To sum this part up, they though MS, then Epilepsy, and Parkinsons, finally a Movement disorder. In this year and a half of tests it had progressed from a numbness to full uncontrolable movements, especially my right side. I finally had a doctor say it was Myloclonus, Generalized Dystonia, and Essential Tremor. No cause, no cure, could get better, could get worse, we can treat symptoms as they pop up.
This was a crusing blow for me and everyone taking the journey with me. For someone who was “on track” this was derailing my goals and day to day living. Thankfully I was the first to start vbloging my attacks etc. on youtube in 2005 and to this day, after some years in a scooter then wheelchair, a machine installed in my abdomen and spine, and this past April DBS Deep Brain Stimulation (2 pacemakers and wires in my brain) I still keep videos.I am a junior member of the Dystonia Medical Research Foundation and a big part of my local DFW Support Group and found the ONLY thing dystonia had not taken was my sense of humor and my drive to help others. So, until I am much better (or cured:) ) I speak to schools, kids, groups, and “one on one” with the you tube audience about the good and the bad.I have been crushed or defeated or told no you will not by Dystonia every day, and every day I get up and try again and again.I would love to wear a bracelet and hopefully you can help spread more awareness with me by adding Dystonia.
Thank you for reading this:)www.shakeyamy.org (link to my youtube videos are on there)Love,
ShakeyAmywww.shakeyamy.org
http://www.youtube.com/shakeyamy
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