Adapting to life with Dystonia

The story of Tom

My life became very strange in the Summer of 2001. While pursuing my master’s degree in counseling, I noticed that my head was slightly tilting to the right without my control. It was like the muscles in my neck were not strong enough to hold up my head, similar to that of a newborn baby. I thought I slept wrong or was working too much or was overly stressed, but it never went away. It kept getting worse.

I saw about 15 doctors and therapists, none of whom knew what was wrong or provided any help. Within months, the involuntary muscle contractions in my neck strengthened and pain set in. My head was now pulled towards my right shoulder and locked in position; all without my control. It was like something took over my body and was moving it without my permission. It was terrifying!

I researched the internet like crazy while in tears from the pain. I finally discovered Dystonia and everything I read and pictures I saw described me exactly. I then went to a movement disorder neurologist who made the official diagnosis. For close to a year, it never occurred to me or any doctor I saw that it might be a neurological problem. It turns out that Dystonia is the third most common movement disorder after Parkinson’s and Essential tremor, but far less known.

Dystonia altered the course of my life in ways I never imagined possible. By the time I got an accurate diagnosis, I was in such extreme pain and disfigurement that I was pretty much unable to do anything on my own. My head and neck were locked towards my right shoulder and significantly worsened with any type of movement because of the intense involuntary muscle contractions. It was like my neck was having a constant charley horse.

I had to drop out of graduate school, quit my job, and move in with my parents because I had become disabled to the point that I could not function without their help. Being almost fully dependent on them was very difficult, having previously been a competitive athlete in several sports for years, a full-time student, and an active entrepreneur. The transition from an active, independent person to a disabled person almost completely dependent on others was devastating. I was only 30 years old in the prime of my life.

For about 8 months, I literally spent the day on my floor in a fetal position in tears most of the time because the pain was too much for me to sit or stand more than 10 minutes. I became totally dependent on the help of others.

None of the traditional treatments for dystonia (botulinum toxin injections and oral meds) were of much help. I then came across a more natural approach that included stretches, exercises, massage techniques, and ways of doing daily activities differently. The underlying goal was to retrain faulty messages in the brain so the muscles no longer involuntarily contracted and move on their own. The process is known as neuroplasticity.

Applying the information I learned, along with taking prescription muscle relaxants that offered some relief, I began showing some minor improvement about 2-4 months later. Unfortunately, being the impatient person I am, I was not improving at the rate I had hoped and was frustrated that I could not move on with my life. As a result of my anger and frustration, I gave up on the program and myself.

I fell into a pit of depression, became completely homebound, began having severe panic attacks, drank alcohol to help reduce the pain and spasms, and had an awful diet. I went from an athletic 190 pounds in 2001 to a morbidly obese 340 pounds in 2006.

In December 2006, I caught a stomach virus and was sick for almost 2 weeks. During that time I couldn’t eat or drink. I was alone with my thoughts in bed all day. I knew when I recovered from the stomach problem that I had to make a decision…go back to the unhealthy lifestyle that was slowly killing me or take back control of my health and improve my dystonia symptoms if possible.

I decided to dedicate my entire life to being as healthy as possible. I completely changed my diet and walked every day. I started by walking about 1/4 mile a day and slowly increased it to 2 miles twice a day. I lost 150 pounds in a year! I also saw about a 75% improvement in my dystonia by more faithfully following the program I mentioned previously.

Life is certainly much better, as are my symptoms, but I am not cured (there is no cure for dystonia). I still have problems with my neck and back that prevent me from doing certain activities, and it takes a lot of work every day to manage the best I can. However, it is night and day compared to the horror I once lived.

I then got involved with support groups (also running my own) and writing articles for dystonia magazines. In 2012, I became certified as a professional life coach, dedicating myself to helping others who are experiencing their own health challenges. Empowering others to improve their quality of life is a great passion of mine and I am so grateful to do this every day!

In 2015, I published my first book, Diagnosis Dystonia: Navigating the Journey. This combination autobiography, self-help, education book provides treatment options, coping strategies, skills for daily living, and tools for dealing with the physical and mental challenges of life with a chronic health condition.

In 2021, I published my second book, Beyond Pain and Suffering: Adapting to Adversity and Life Challenges. This book provides strategies for managing difficulties we are experiencing in the moment, and for the unpredictable stressors in life that cause great pain and heartache. It teaches how to cope and manage all tough life situations and move beyond the pain and suffering they bring, be it physical, emotional, or both. It teaches how to not make the most difficult parts of our life the most significant part of our life.

I have been faced with major challenges throughout my adult life. What helps me jump over hurdles is my belief that everything has a solution. There is nothing that can’t be altered to improve our quality of life. Obstacles provides us with opportunities for us to become better people and every day I am grateful for the chance to help myself and others achieve their personal best.

I do my best to turn my mess into a message, which is why I write, coach, and offer support to others as much as I can. Being sick with anything is lonely and scary, but especially something like dystonia that is not well known. To let someone know they are not alone and lend a hand to help can mean everything.