Ben – Rochester, NY
My name is Ben and I first began having difficulty walking when I was 6 years old. My right foot started to swing out toward the side and my knee would hyperextend making walking painful and extremely challenging. After one doctor told my parents that I was just seeking attention and that there was nothing medically wrong with my body, we knew we needed a second opinion. Following some research, my father, a physician himself, discovered a disease called Dystonia which seemed to match exactly what I had been experiencing. Shortly after his discovery, we made contact with a group of neurologists in NYC who specialized in movement disorders. I would soon be diagnosed with DYT1 Early-Onset Generalized Dystonia. Being a hereditary disease, my brothers would also get the same diagnosis. Having been placed on numerous high dose medications, my symptoms would be neutralized; however, I still needed to use an electric scooter to get around, and because Dystonia had also started forcing contractions in my dominant wrist, I had to teach myself to write left handed.
By age 13, I had the normal change in my voice, but the cracking and choppiness did not stop and speaking became so frustrating that I just stopped talking. Again, after another examination, I was diagnosed with another form of Dystonia, this time called Dysphonia, or Dystonia of the vocal chords. Since there weren’t many effective treatments for Dysphonia, I would begin receiving Botox injections into my vocal chords and managing with the voice it would allow me. With the medications maintaining my legs and wrists, I would gradually be able to get out of the scooter and use crutches for walking.
Finally, with the support of my family, I underwent a surgical procedure called Deep Brain Stimulation in 2005. This has given me new life! With frequent tweaking of the electrical stimulations going into my brain, I have been able to get rid of the crutches and walk with a cane. I have regained the ability to use my right hand and recently my voice has improved so that I no longer need to receive the vocal chord injections. I also have been able to come off of the majority of the medications and thus been freed of the annoying side effects. We all want to be able to enjoy life free from Dystonia, but despite the improvements in treatments, there is still no cure.