Living with Cervical Dystonia: Pat’s Story
In honor of International Women’s Day on March 8, this month the Dystonia Medical Research Foundation (DMRF) is recognizing women with cervical dystonia whose perseverance is nothing short of awe-inspiring. Their stories will be featured in a four-part series called Warrior Women Wednesdays.
Cervical dystonia is a type of dystonia that affects the neck muscles, causing involuntary head and neck movement. While cervical dystonia—also known as spasmodic torticollis—can occur in people of any age, it most commonly begins after age 30 and affects women approximately twice as often as men.
This week, we’ll hear from Pat C, an 83-year-old retired registered nurse who is living with cervical dystonia. She shared her story with the Dystonia Medical Research Foundation (DMRF) to remind other women with CD that they are not alone and to reinforce the importance of connecting with others along the journey.
Finding Support: You Are Not Alone
The beginning of Pat’s cervical dystonia journey
A retired nurse, Pat’s journey with cervical dystonia began at age 55, shortly after a devastating fall down icy stairs that wrenched her neck. At the time, she was unaware that the incident would mark the beginning of a lifelong battle with cervical dystonia. Returning to work proved to be excruciating. Fulfilling her responsibilities as a nurse became nearly impossible as she struggled with intense pain.
Her doctor advised her to try physical therapy, but the sessions didn’t do much to help. Pat also tried various oral medications, but her body’s response was less than favorable. Unaccustomed to strong medications, she often found herself disoriented. The muscle relaxants did little to ease her symptoms, and she eventually discontinued them.
A fortunate encounter
It was a compassionate physical therapy aide who changed the course of Pat’s journey. Recognizing that the treatments were ineffective without a proper diagnosis, the aide strongly urged her to see a neurologist—and she did. The neurologist immediately diagnosed her with cervical dystonia. For the first time, Pat had a name for her suffering.
She considers herself fortunate to have received the guidance from the physical therapy aide that ultimately led her to a specialist who understood her condition. Pat began receiving botulinum toxin treatments the very next day. Though it took a few rounds of injections, her head slowly began to return to a more natural position.
Empowerment through support groups and self-advocacy
Along her journey with cervical dystonia, Pat discovered the DMRF. After attending a DMRF seminar in San Francisco many years ago, she was deeply moved by meeting others who shared her diagnosis and were leading fulfilling lives. “It was such a joy for me to meet so many people who were living their own stories and having good lives,” she mentioned. Pat was also motivated by the dedication of the DMRF in its mission to fund research, advocate for awareness, and provide essential resources for individuals living with dystonia.
The experience inspired Pat to start a support group open to all types of dystonia. Over the years, the group has evolved, adapting through the challenges of the COVID-19 pandemic with virtual meetings. While hybrid meetings proved difficult, Pat now alternates between in-person and Zoom sessions, ensuring that everyone—regardless of location—has a space to connect. Seeing friendships form through the shared experience of dystonia brings her immense joy. “I am extremely inspired by how groups share experiences openly and freely,” she shared. “I feel very connected and have developed wonderful friendships with many of the regulars.”
Pat’s message to other women with cervical dystonia is clear: support systems and self-advocacy are crucial. Pat’s advice is to “find people who have or are connected in some way with others who have dystonia. Joining a support group in person or by Zoom can provide a place for you to be heard. DMRF is a fabulous guidepost. Call on them. Use their information. You are not alone.”
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