carolyn collins
I have a neice, Carole Ann, who is 40 years of age...she was diagnosed with Dystonia at the age of 13...took them years before they could put a name to her diease....she was five years of age, when doing her home work from kindergarten the parents noticed that her hand was tiring very easily, and then later on, both hands started going in an outward movement...then it started with her feet turning inward...from doctor to doctor she was taken....they even did surgery on her hand or arm to cut the tendon, to keep the hand from drawing outward...needless to say, that did not help....Today, Carole is in a wheel chair...she stands and transfers, but cannot walk unassited...her speech was affected due to the torticollis movement of the neck and clinched teeth. She is a beautiful girl, and has the most beautiful smile and face...We still don't know what caused this in Carole...She had Chicken Pox, around 5 years of age, though perhaps that could have been the start of the diease..does this story sound familiar...Today, Carole is on a lot of medications...Artane...muscle relaxer..and many others...Carole had brain surgery at the age of 16 to try and do something with the lesions in her brain...she also had a implant of wires to stimulate her muscles or to relax them...It would be interesting to hear from someone that has had a similar experience....thank you in advance...I remain, Carolyn Collins, Aunt to Carole