Dystonia is a chronic neurological movement disorder causing the neck to involuntarily turn to the left, right, upwards, and/or downwards. The condition is also referred to as "Spasmodic Torticollis." Both agonist and antagonist muscle contract simultaneously during dystonic movement. Causes of the disorder are predominantly idiopathic, a small number of patients develop the disorder as a result of another disorder or disease. Most patients first experience symptoms midlife. The most common treatment for spasmodic torticollis is the use of botulinum toxin type A.1
1. Wikipedia contributors. "Cervical dystonia." Wikipedia, The Free Encyclopedia. Wikipedia, The Free Encyclopedia, 29 Oct. 2007. Web. 1 Dec. 2010.
I began experiencing extremely tight, painful muscles in my neck and shoulders. My head was tilting to my left shoulder, my torso was being pulled to the right side of my body and I was having full body spasms.
I was correctly diagnosed with Cervical Dystonia by a Seattle-based neurosurgeon.
I received my first set of Botulinum Toxin (Botox) injections, which is a treatment method for Dystonia patients.
I received my second set of Botulinum Toxin (Botox) injections, which is a treatment method for Dystonia patients.
I checked into the Spasmodic Torticolis Recovery Center in Santa Fe, New Mexico. Here I would learn how to manage my Dystonia symptoms through a natural approach to healing. Areas of focus included physical therapy, meditation, targeted massage techniques, having a healthy diet and spiritual guidance.
I graduated from the Spasmodic Torticolis Recovery Clinic, receiving a diploma after successfully completing the S. T. R. C. Program.
I suffered my first relapse, plunging my body back into the throngs of pain, tight muscles and spasms that I had felt back in 2008. It would later take 7 months of commitment to physical therapy to heal my body up to the point that I was at back in December of 2009.
I announced the launch of my Dystonia Awareness Campaign. An endeavor I took on in hopes of bringing awareness and understanding to a neurological disorder that affects as many as 250,000 people in the United States alone.
My first article entitled A Proper Diagnosis Was Music To My Ears was published in the Dystonia ST magazine.
From the spring of 2010 through the present day, I have been a staunch advocate for individuals like myself who are living with varying forms of Dystonia. Individuals reach out to my via email on a daily basis for help, support and guidance regarding all things related to Dystonia. I currently work at the Dystonia Medical Research Foundation as well as the Dystonia Advocacy Network as an advocate in hopes of bringing further awareness to this unique neurological disorder called Dystonia.
An audio recording reading Katelyn Mallone's article "A Proper Diagnosis Was Music To My Ears."