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Dystonia: A Journey of Discovery and Change

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Mary Beth White-Comstock

My journey with dystonia started long before my diagnosis. In my late twenties I noticed that my head would shake (tremor) when I was tired or fearful. I continued to have tremors throughout my thirties during stressful times, and ultimately decided to see a neurologist, who diagnosed me with essential tremor. He told me l likely inherited it from my dad, who also had a tremor. He told me it was benign and that I needed to ignore it and learn to live with it.

 

Pandemic Proportions

Almost thirty years later, as the COVID-19 pandemic began to escalate, so did my symptoms. I was working 12-14 hours a day as an epidemiologist on the COVID-19 pandemic response at CDC. I was living the response day after day through continuous situation updates, responder’s stories from the field, and requests from health department and healthcare providers desperately seeking support and direction. This produced extreme physical exhaustion and fatigue and I soon began to experience changes in the frequency and severity of my tremors. I also began having severe spasms on the right side of my neck and chest, which were ever-present during video-conferencing calls. When I glanced at myself on my monitor, I could see my head bobbing back and forth and my head oddly tilted to one side.

In addition to physical exhaustion, I constantly experienced intense feelings of helplessness in the face of a virus that, at that time, was unstoppable. There were limited resources, such as personal protective equipment, vaccines, and anti-viral medications to stop the spread of the virus, and inconsistent public messages being spread about the virus, which lead to confusion and distrust among many. The public’s health weighed heavy on my heart and mind. I felt ineffective and defeated in a job that had been my life’s work and passion.

A year into the pandemic I could no longer ignore my worsening symptoms. I had disable the video feature during all video conferencing calls and declined presentations and other assignments that required visual representation. I had become extremely self-conscious about my appearance and feared it would be distracting to others and harm my credibility.

My Dystonia Diagnosis

I contacted a friend who was on the medical staff at a university hospital and explained my symptoms. He suggested I see a neurologist in the movement disorder clinic at his hospital. I made an appointment the following week. Certain the neurologist was going to tell me that I had essential tremor, or worse Parkinson’s disease, I walked in with little hope of improvement.  After taking an extensive history and performing a thorough neurological exam he told me that my problem wasn’t essential tremor or Parkinson’s disease, but primary cervical dystonia. He explained that it is a neurological condition where the hemispheres of the brain do not communicate well, so the body has uncoordinated movements. He explained that there is no cure but described temporary treatment options including botulinum toxin injections (Botox) and medications. He discussed the side effects of Botox injections and told me that I would need to return every 3 months to sustain relief of my symptoms. I expressed my interest in researching alternative treatment approaches and he supported my decision and told me to come back for a follow up appointment in a year, or sooner if my symptoms worsened.  I studied all of the educational materials he provided and began searching the literature for non-pharmaceutical modalities.

Finding Dr. Farias: A Path to Recovery

After reading numerous journal articles and other resources promoting Botox and other drugs, I stumbled across a video of a talk by Joaquin Farias. Captivated by this work in neuroplasticity and the case study he presented at Harvard, I dove deeper into his work and found a link to the program he created, the Farias Technique. His holistic approach to health and wellness, at least in print, was consistent with my beliefs and lifestyle. For the first time in many years, I felt cautiously hopeful that I had discovered a path to healing.

After exploring the information on the Farias’ website I made a remote appointment with a physical therapist on staff, who also had cervical dystonia, to answer my questions about the program and help me decide if I was a good candidate. She assessed my symptoms via Zoom and answered all of my questions, including whether Dr. Farias was legit. She told me that she definitely felt like the program was a good fit for me and suggested I join for a few months and see for myself.

A New Lifestyle
I joined the program and began strictly following the suggested schedule for people with cervical dystonia. I carved out 2.5 – 3 hours every day to complete the activities in the modules. Since I was still working in the throes of the pandemic this wasn’t always easy; however, I soon realised that this needed to be my priority.

I looked forward to signing on to the platform each day and learning new strategies and information that would help align my brain and body. The exercises, dance routines, lectures, music, and guided meditations quickly became a revered part of my life. I maintained a daily log to track my activities and help me stay focused. About six months after I began the program, I started noticing that my tremors were less frequent and my head was more aligned. This was the encouragement I needed to continue my efforts and commit to my recovery. With the support of my husband, I resigned from my full-time position in public health.

Finding Stillness and Balance
While my tremors and spasms had lessened, I still had pain in my neck which made sleeping difficult. I started seeing a chiropractor for myofascial release and continued this for several months with success.

I also resumed my spiritual practice that I had neglected in recent years. I am a Quaker who is grounded in Buddhist practices and beliefs including mindfulness and meditation, and the concepts of spaciousness, aimlessness, impermanence, and equanimity. I started reading more books and listening to podcasts by my favorite Buddhist teachers, Thich Nhat Hahn, Tara Brach, Rick Hanson, and Sharon Salzburg.

I also found a skilled therapist that helped me work through the helplessness and devastation I was feeling from witnessing worldwide suffering and loss, the loss of my mother (which occurred during this time), and the effects of isolation on myself and those close to me. Through this work I developed ways to better manage my strong empathic tendencies and create boundaries that respected my needs. I also realised the importance of self-compassion and internalised the wise words of Kristen Neff, an expert in the field of self-compassion, until I believed them.

Reconnecting with nature through daily walks in the woods and along the river have become an essential and cherished part of my life.  It is where I draw strength, give grace and take my practice.

My Practice
Three years later I remain a member on the dystonia platform, but have developed a daily practice that incorporates elements in the program and spiritual rituals that includes walking, yoga, Qigong (Five Elements routine), neck and shoulder exercises, meditation, and gratitude affirmations. When I have a flare-up of symptoms I hop back on the platform and pick up right where I left off.

During my annual follow-up, my neurologist told me that my symptoms are almost undetectable. He attributes the improvement in my symptoms to embracing change, reducing stressful demands, and consistently practicing the strategies that I have available to me.

Conclusion

Dystonia profoundly changed my life, but the path to recovery has been life-changing in many ways. I hope my journey offers a glimmer of hope to others in the dystonia community.

I am grateful every day for the Farias Technique, unwavering support from family and friends, my healthcare team, and to myself for finding my worth and making my well-being and happiness a priority.

In gratitude and peace.