Jo Nystrom’s Story
On and off for a few years during high stress times I felt a right head pull and right arm tremor, then it would pass.In May 1999 we did a total reconstruction of our home, we moved back into our home on Memorial Day….the cleaning began!
It is this action I believe led to my crisis point resulting in ST/Dystonia, the overuse of my right arm cleaning up the newly remodeled home. On June 16, 1999 I was driving 30 miles to attend a family birthday party and my head began an extreme right pull. The drive home was so painful that I was on the verge of tears. In the morning, my right ear was on my right shoulder. I was already under the care of a chiropractor and saw his partner that day. He had great concern, took an x-ray, worked on me for an hour and then sent me to the emergency room for medication to relax the muscles.
I believe my diagnosis was missed back in January, 1999. I informed my chiropractor that I was feeling a right head pull and it had begun to show up in photos. I began weekly massage on his recommendation. After the June 1999 crisis, I began care at a clinic specializing in neck problems. The chiropractor continued adjusting my neck, performing massage and physical therapy. It is my belief that they did a few things that only made my condition worse.
On their recommendation I was referred to a neurologist who was able to diagnose my condition immediately. To be safe, we did all the testing including MRIs, blood tests etc. After reviewing my family history and noting the age of onset, the doctor felt I had hereditary dystonia. After numerous struggles with oral medications, I finally decided to give Botox injections a try. I decided to receive my injections at the University of Minnesota and I finally got relief! I began Botox strain A in the summer of 2003 and continue with quarterly injections.
Living with ST has its ups and downs. The good weeks following Botox injections are filled with activities that I am unable to perform during the bad weeks. Vacations are planned around the good weeks in addition to driving, reading, hand writing etc.
Depression is a constant battle, yet I feel after nearly five years I am finally accepting my condition. I take two oral medications and go to weekly global physical therapy which has given me great results. The most difficult thing for me to adjust to and accept is in not knowing what the next day or even the next hour may bring. Will it be good day or a bad day? After being what would be labeled a “Type A” personality, the frustration of not being able to physically do what I mentally want to do is very frustrating. My spouse, family, friends, online support people are of great help. Each of us handles this ever-changing disorder differently.
I do my best to take one day at a time. I try to follow the optimism and example my father set for me as a person handicapped with polio – and it’s advice I’d like to share with you. Seek out the organizations available to you, like ST/Dystonia, Inc., so you know that you are not “alone”. Do your best not to become “your neck” , that is, let your ailment dominate your life. Just be yourself.
Jo A. Nystrom
May 6, 2004
I've found your web site the most helpful of them all. The way it's written really has helped me. Kristi, New Zealand