Life Is Good

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by Janie Gordon-James

At 40 I was an active mother of two, working fulltime as a bank manager, teaching aerobics 4 days a week and taking care of a home. Life was good.

One morning, early during the week of Thanksgiving 1990, I awoke with my neck twisting and pulling my head to the left and back. My family doctor, assuming I had pulled a muscle in my neck, prescribed Valium. He said my neck might not be better on Thanksgiving Day, but that I could, at least, sit at the dinner table smiling and not be the least concerned that my neck was twisted. He was right about Thanksgiving; he was wrong about the pulled muscle.

After 3-4 months of trying physical therapy and chiropractors without success, I was diagnosed, by my family doctor, with Spasmodic Torticollis. I lived in a town of 3000 people in southwestern Ohio. That I was diagnosed so early (and by my family doctor) was fortunate for me and also rare. As an aside – there are actually 4 other people from the same area that have Torticollis. (“Things that make you go hummm.”) My doctor sent me to a neurologist who prescribed baclofen and Neurontin. Both of these drugs helped somewhat, but my neck was still turned to the left.

I decided to return to work, but was laid off immediately. Aerobics were out of the questions. I spent my time sitting in a recliner, reading Stephen King novels and becoming more depressed. After about six months, my neurologist found a doctor at Ohio State University Medical Center who was using Botox to help Torticollis patients. In the summer of 1991, he injected my neck with Botox and after 2 weeks, the pulling stopped. I still had a few spasms, but was able to go back to a normal life. I found a less stressful job. My marriage had been rocky before the ST. Soon the marriage crashed.

By early 1992 my neck was straight, the spasms were gone, my children were thriving, and I was working. Life was good. But something was missing. One day, on the spur of the moment, I called a man I used to talk to when I worked at the bank. His name was Charlie and he and I seemed to have had a connection. I discovered that he had moved to Texas – 1000 miles away – but his family still lived close to me. We met the next time he visited Ohio (April of 1992) and by July 1992 I had moved to Texas with him. Our family and friends thought we were nuts.

In Texas I found a great job in corporate America. I worked in a maze of cubes doing “corporate” things, but being well paid for those “things”. For the next 5 years, Charlie and I struggled with the issues of children (I had 2, he had none), finances, and the melding of 2 very different personalities. But we loved each other and weathered every storm. Life was good.

In 1997, I was working at my computer and my neck began to pull to the left. I immediately panicked. The ST was back after 5 years of remission. I flew to Ohio State, got another round of Botox which “fixed” my neck and I was once again back to “normal”. In Texas I found a neurologist who gave me Botox injections every 5 – 6 months as a preventative measure.

Once again life was good. My neck was straight, my career really took off, my children were no longer children but adults off to college, and Charlie and I were daily strengthening our relationship through love, respect, and commitment. The only “blip” in the relationship was that we were not married, and frankly that was not a big issue. I would have liked to make our relationship official, but we were as committed as a married couple and quite happy.

Then the bomb dropped. In January 2005, only 2 months after my last Botox injections, the ST came back with a vengeance. I waited another month, received another round of Botox, but nothing changed. The Botox had quit working!

I took the test that determines if I had developed antibodies to the Botox. The results were negative. But the Botox was not working. I waited another 3 months and then visited a neurologist in Houston. He changed the Botox dosage and used EMG to direct the Botox to the muscle most affected. Again, there was no change. By this time I was working from home. Charlie was my rock. He helped around the house, did most of the cooking, went with me to every doctor’s appointment, and asked question after question. After another unsuccessful visit to the doctor in Houston, we found a doctor at the University of Texas, Southwestern Medical Center in Dallas. He tried Myobloc. It did little to relieve my symptoms and the side effects were unpleasant – constant dry mouth and difficulty swallowing. He also put me on clonazepam and baclofen. Again Charlie was there, supportive, encouraging, and a shoulder to lean on, when I needed it – which was often.

The pain was terrible. My pain management doctor prescribed Lyrica. Then he gave me the duragesic patch. Whoa………life got interesting. I was suddenly in a different world. The pain was gone, but so was my mind. I was still working but struggling to make sense of the world I used to know. As an example, I spent 5 minutes one morning trying to find the question mark on my computer keyboard. I just knew it was on one of the number keys at the top! At least my sense of humor was still intact. I laughed out loud when a coworker, upon hearing my story, sent me an email saying,
“The question mark looks like this:?”.

In the spring of 2006, my Dallas doctor sent me to a neurosurgeon at the Mayo Clinic in Rochester, MN. He performed selective peripheral denervation surgery in June. I was better – able to discontinue the Lyrica and the duragesic patch. I went to physical therapy and did my stretches and strengthening exercises at home. I had hoped for a complete “cure” (none exists) and got maybe 40% improvement. I could straighten my head when sitting or standing still. Walking was tougher – my neck still wanted to turn left. I resumed Botox injections every 3 months which further helped the twisting.
I went back to work and lasted 6 months before I opted for disability. Computer work all day is not good for the neck and shoulders, and the stress of the corporate world aggravated my condition.

But a silver lining appeared – not a new ST treatment, but a marriage proposal. After 15 years, Charlie and I decided to get married. We planned a party at our home in Texas. It was a party to celebrate our 15th anniversary and our wedding. 32 friends and family members came to stay for varying lengths of time. We housed them at our home, the neighbors’ house, an apartment in the neighbors’ garage, several travel trailers, and a nearby bed and breakfast. For a week in late July we ate and drank and talked and laughed. We rented a huge tent with tables and chairs. People driving by must have thought there was a circus at our house. I guess actually there was – we played horseshoes, croquet, and bocce ball. We swam and used loaded squirt guns on the unsuspecting.

On July 28 we got married in the neighbors’ gazebo with 75 people looking on. The ceremony was at 9:00 that night. The gazebo was decorated with small white lights, flowers, and ferns. The minister was a friend of Charlie’s from 5th grade. The ceremony was simple, but beautiful and touching.

On that day, Charlie and I celebrated our love and commitment. I would be lost without his love and support. My life is not about dystonia. I have dystonia, but I have so much more – Charlie, 2 wonderful children, a loving family, and caring friends. I have a reason to get up each morning, people to love, and so many things to be thankful for. Life truly is good.

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