The Weight of Dystonia

Neurology Now
June–July 2013
Volume 9(3)
p 48

Abstract

Cervical dystonia has had a massive impact on my life.

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I have tried numerous times to write my story and never been satisfied with what I wrote. Maybe that's because it isn't simply a story of triumph. But then, not everyone's experience dealing with a chronic disease is. I have cervical dystonia, also known as spasmodic torticollis. This extremely painful neurologic condition causes the neck to involuntarily turn to the left, right, up, or down.

I didn't give much thought to the stiff neck I awoke with one morning in 2001. My life was full as well as fulfilling. At the time, I was the corporate liaison to seven division managers at a Fortune 500 company.

My stiff neck worsened and my range of motion became limited. Worst of all was the agonizing pain. Although I remained undiagnosed for years, my primary care physician tried convincing me to apply for disability leave. I was self-supporting and terrified. At the time, I had begun to plan for retirement and was almost debt-free.

During the four-year progression, I tried every conceivable form of physical therapy as well as several medications. Nothing helped. Ultimately, I reached the point where going to work was impossible. Suddenly, the contortions appeared, and I was finally diagnosed with cervical dystonia. My head began to pull downward, and I had the weirdest sensation of being yanked to the floor by the weight of my head and gravity. My field of vision narrowed, and I began to strain my eyes upward to compensate.

Breathing remains difficult. In order to eat, I have to recline enough to get the food in my mouth but not too far back so that I choke. For the most part, I eat through a straw. In addition, I have a hump on my back (the medical term is kyphosis), the result of rounding of the spine where the vertebrae are compressed. Even sleep is difficult; I can only do it sitting upright.

Dealing with insurance companies and the government as a disabled person has added to the pain of cervical dystonia. I have been denied benefits numerous times. The appeals process can be difficult and discouraging.

What keeps me going? Howard Thiel, the founder of ST Dystonia (spasmodictorticollis.org ), has inspired me by his determination to live a full life in spite of cervical dystonia and to help others with the disease.

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I'm really an optimist by nature. I have lots of interests, and when I'm feeling down, I remind myself of that. I still try to laugh and avoid negative people. A sign on my door says, “If you can't enter with a smile on your face, don't bother knocking on my door.”

Still, the challenges of living with a relatively unknown condition can seem endless. The long journey to a diagnosis is often followed by the uncertainty of treatment. For example, I was initially informed that I was not receptive to Botox but subsequently learned otherwise.

Unquestionably, the time to increase awareness of cervical dystonia is now. What I would like to see happen is for all of us—patients, family, friends, healthcare professionals, advocates—to band together and raise awareness as well as money for research. Ultimately that's what will help ease the weight of cervical dystonia.

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