Living with Cervical Dystonia: Diana’s Story

How it all began

At just four years old, Diana suffered a fall that would unknowingly set the course for a lifelong battle. A fractured C2 vertebra and a minor head injury seemed to heal, but in their wake came symptoms that would puzzle doctors for decades. Diana began to experience neck problems, swallowing difficulties, and even aspiration (accidentally inhaling food into the airway). By 15, her voice grew hoarse and faint, a whisper of the vibrant girl she once was.  The road in life lead to several fractures, other injuries and infections.

A rollercoaster of a journey to diagnosis

Despite these setbacks, Diana pressed on and has led an active life. Her career as a registered nurse demanded both emotional and physical strength—whether it was providing patient care or lifting 50-pound boxes. But as she neared 50, Diana’s body began betraying her. Spasms in her legs and trouble walking began to chip away at her independence. “I have had long periods of time where I could not drive, run errands, or go grocery shopping,” she shared.

For most of her life, doctors were unable to find a link in her symptoms. Some diagnosed her with fibromyalgia. Others weren’t so sure. When she was 49, Diana saw a neurologist who performed a lumbar puncture and an EEG but was not able to diagnose her with anything. The testing didn’t end there. Diana recalls, “I have had extensive genetic testing, four separate lumbar punctures, CT scans, MRIs, EMGs, EEGs, and physical exams.” Even after all these doctor visits and tests were unable to provide a definitive diagnosis, Diana didn’t give up. She kept searching for answers.

However, by 60, Diana’s painful and debilitating symptoms had compounded again: excruciating occipital neuralgia, optic neuritis, and a worsening range of motion in her neck, shoulders, and back. Her once fluid movements became restricted by pain and stiffness. Accidents and falls became common, each one leaving its mark.

Finally, the answer Diana had been looking for

It wasn’t until she was 62 that a neurologist finally saw what others had missed—generalized dystonia. After decades of uncertainty, she had a name for the invisible force controlling her body. Even then, the diagnosis would later narrow to cervical dystonia, as medical teams changed, and perspectives shifted.

Medications worked for what seemed like fleeting moments—some for months, others for years. Neurotoxins have helped her, although she noted that they often require frequent dose changes.

Adapting to changes and overcoming challenges

“Dystonia has interfered with most hobbies and sports activities. My ability to go camping is limited, requiring additional help from my children. My diet has continually declined due to aspiration and swallowing problems. My voice is variable throughout the day, making communication very difficult,” Diana revealed. Even after facing such adversity, Diana has learned to be resilient, pivoting as she always has and adapting to each challenge with relentless determination. High-risk sports had once been her passion, but when she couldn’t practice them anymore, she poured herself into leading youth groups.

“Along the way, I was blessed to have a service dog, Jollee, who was able to help me up when I would fall, turn on and off lights, get shoes for me—sometimes they didn’t match—and do lots of other things,” Diana said. “Jollee followed well over 100 commands and had a language that we both understood. She had a wonderful disposition and provided companionship, love, joy, and laughter.

“I have spent years taking on new challenges and have been in a state of constant change to manage symptoms and to stay at the highest possible level of function. I take on each new challenge and experience two steps forward and three steps back for a lot of my issues. But I don’t give up.”

Diana’s advice for other women living with cervical dystonia

Diana’s advice for other women living with cervical dystonia is simple but profound: “Develop a support network. Try many of the suggestions that work for other people—not just once, but several times. Live life to the fullest and be thankful for everything that you can do.”