What's it like to live with a debilitating neurological disorder

"Isolated and alone because of severe chronic pain, I experienced powerful anxiety and panic attacks.”

 

It was summer 2001 and life was great. I had awesome friends, I was a successful business partner and I was busy pursuing my master's degree, playing sports and traveling. I was living the good life and things were going as planned until I noticed alarming changes in my body; stiffness and pain in my neck, involuntary movements and trouble with my balance.

I saw many doctors before finally being diagnosed with dystonia. Dystonia is a neurological movement disorder that causes muscles to involuntarily contract, producing painful, awkward movements and postures (imagine the sensation of a Charley horse that never goes away). It completely changed my life. I became disabled to the point that I had to drop out of school, give up work and social activities, and move in with my parents because I could barely function without help.

After many treatments that had little benefit, I fell into a pit of depression. Isolated and alone because of severe chronic pain, I experienced powerful anxiety and panic attacks. I medicated myself with alcohol to numb the intense physical and emotional pain and my diet was awful. Within five years, I weighed well over 300 pounds. I didn’t recognize myself. I was a stark contrast to the happy-go-lucky, 180-pound athlete who was a two year captain and MVP on the New Paltz baseball team. Life was so brutal I almost ended it.

The main symptom is involuntary muscle contractions that result in slow repetitive movements, cramps, or abnormal posture.
The main symptom is involuntary muscle contractions that result in slow repetitive movements, cramps, or abnormal posture.

In December 2006, I became ill with a stomach virus. During that time, my dystonia symptoms decreased somewhat and I lost about 15 pounds. While getting sick was not the type of motivation to change I would have chosen, it was exactly what I needed to start putting my life back together.

Within a year of healthy eating and exercise, I lost nearly 150 pounds and learned new ways to better manage my dystonia. I still have problems with my neck and back (there is currently no cure for dystonia), but it is night and day compared to the torture I once lived. No longer living in the darkness of despair, my life is again filled with joy and passion.

 

 

My experiences led me back to school in 2012 and I later became a certified professional life coach with a mission to help others with their challenges. In 2015, I published a book, “Diagnosis Dystonia: Navigating the Journey,” which was recognized by the Michael J. Fox Foundation. I wrote it to give others hope and inspiration, and provide practical tools for managing life challenges, health and otherwise.

My message to anyone facing a difficult health condition or other obstacle: you are not alone, hope never dies, and every single day is an opportunity to get better. Obstacles provide us with opportunities to grow and become better people, and every day I am grateful for the chance to help others and myself achieve their personal best.

Tom Seaman ’94 (Elementary Education K-6 Psychology) has pursued private business ventures in health education and is currently a Certified Professional Life/Health Coach and author of the book, “Diagnosis Dystonia: Navigating the Journey.” To learn more about Tom visit www.diagnosisdystonia.com. Follow him on Twitter @dystoniabook1.

 
 
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