Tardive Dystonia/Dyskenisia

My name is Susan and I have Dystonia. I developed Dystonia/Dyskenisia in 2002 after stopping an anti depression medication and I was in a minor car accident. I have right hemifacial spasms, blasphorspasms, retrocollis with my head twisting to the left and slurred speech. Before I developed Dystonia I worked as a Senior Executive Assistant in Human Resources. I have a degree from Lesley University in Cambridge, MA in Arts Administration, Volunteerism and Fundraising.

Since I developed Dystonia I have been seen by over 15 doctors and treated with 40+ medications. Most made me worse because the medications used to treat me actually caused Dyskenisia. The doctors never listened to what I had to say. I was treated as an ignorant, lying mental patient.

My family has now told everyone that I could harm people, elderly, children, etc. To call the police on me that I could be dangerous. Neighbors, friends, family have all told by my family that I steal from them and abuse an elderly parent. This is my special education teacher sister and my brother, a lawyer. They first told everyone I was a cheat and a fraud. They have tried to have me arrested or locked in a hospital. Everyone has believed the accusations because I have secondary Dystonia. Plsease contact me about your Dystonia and your life. This will be a new support group website for people with TD.