I was a senior in college studying graphic design when my speech suddenly started slurring. Then I began having spasms in my arms, my face drooped, and my gait was off balance. When I went to a doctor, he referred me to a neurologist. After an MRI, an electromyography (EMG) test, and blood tests, I was diagnosed with mild generalized dystonia, a movement disorder that causes muscles to contract uncontrollably. The condition affected my vocal cords, neck, gait, and ability to write. I was devastated, and I became self-conscious about my speech.

I took a two-year break from college to focus on getting better. I went through physical, occupational, and speech therapy to help improve my facial and body movements. I tried injections of botulinum toxin (Botox) [which reduces excess muscle activity]. That worked and continues to work. However, the pain and spasms in my arms made my hands tremble, which made it hard to do simple tasks like folding clothes or making meals.

Out of the Fog

I had trouble writing, and I had to stop driving because of involuntary muscle spasms. As I lost more of my abilities, I became depressed. I sought counseling, which helped me get back on my feet. I was able to return to college, and I graduated with a bachelor's degree in graphic design.

Over the next few years, with the help of regular physical and occupational therapy, my speech, facial movements, gait, and ability to write improved. Today, I no longer need physical or occupational therapy. Instead, I participate in exercise classes for people with neurologic disorders at the local YMCA. And I can drive, thanks to medications that alleviate my muscle contractions.

On to the Page

Whenever people heard my story, they encouraged me to write about it. I eventually took their advice and started writing. It didn't come easily, but I persisted. Two years later, I self-published Be Strong and Continue On: Overcoming Obstacles (Gatekeeper Press, 2016). The book chronicles my daily struggles—just buttoning a button was a nightmare—and how hard I fought to get better. I hoped that sharing my experience would comfort others in similar situations. I also wanted people to understand dystonia. I wanted them to know that this disease can make you feel awful on the inside, even if you look normal on the outside.

My experience has taught me not to judge people. You never know what someone may be going through. It's also taught me to be more patient—especially when something as simple as tying my shoes can take forever.

—As told to Paul Wynn