The Positive Twist has profoundly uplifted me and infused me with the resilience to continue my journey. I’m sincerely grateful for the work you’re doing.
In 1997, as a passionate college swimmer, I faced the heartbreaking decision to abandon my senior year due to a debilitating condition that caused my neck to involuntarily pull to the right. Despite my determination to persevere, my performance plummeted to an unprecedented low. I sought help from the trainer daily, enduring ice baths and receiving therapy from a Transcutaneous Electric Nerve Stimulation (TENS) machine, all in the hopes of regaining my strength.
Regrettably, the trainers, my coach, and my teammates often doubted my struggles, leading me to ultimately quit swimming that year. The involuntary pull persisted, only manifesting when I was in the water. After college, I transitioned to triathlons, but the issue continued in the water.
Fast forward to August 2022. I embarked on a new journey as a social-emotional teacher. After navigating through teacher training week and a week with my students, I found myself in the Emergency Room that Friday due to a debilitating migraine. I was desperately trying to stabilise my head, which was shaking and pulling to the right, accompanied by painful spasms that left my chin locked against my clavicle, causing bruising. This experience was both frightening and surreal. My grandmother had faced the same condition, and my mother confirmed this family history. Unlike many who go undiagnosed for years, my neurologist quickly identified my condition as Cervical Dystonia. We began Botox treatments, but my situation escalated, leading me to a movement disorder specialist. That experience was challenging, and I believe this doctor should reconsider her practice. I want everyone living with dystonia to know they have the right to advocate for a medical team that aligns with their needs.
From the outset, prioritising my mental health became paramount. Interestingly, I had begun a profound exploration into discovering internal joy about two years before my diagnosis. I am fortunate to have an exceptional therapist, and I have pursued certifications in cognitive therapies, including EFT Tapping and Transformative Art Healing, as well as a healing modality rooted in Internal Family Systems called HeartSync. This work has fostered healing and internal joy for myself and others. Additionally, my journey into nutrition has had a remarkable impact on both my physical and mental well-being, thanks to the holistic guidance of my nutritionist.
I am incredibly grateful to have found a supportive environment at Rocky Mountain Movement Disorders, located at Swedish Hospital, a highly esteemed neurological facility in Colorado and beyond. Under the expert care of Dr. Kumar and Dr. Salinas, who are leaders in the fields of dystonia and Parkinson’s disease, I have received invaluable treatment.
In March 2024, I underwent Deep Brain Stimulation Surgery, a life-changing option for which I am profoundly thankful.
As I come to terms with the reality of a genetic strain likely to remain persistent, I hold onto the hope that we can optimize my Botox, brain programming and medications to enhance my functionality.
Approximately ten months ago, I developed “drop foot,” which led to daily falls and frequent collisions with walls and objects in my home. This challenging experience necessitated the use of a walker.
Recently, I’ve begun to regain strength in my foot, and with the extraordinary support of Kevin Macomber from ‘Above It All Physical Therapy,’ I have re-learned how to walk, improved my right leg strength, and worked diligently on my balance.
I owe HOTWORX a debt of gratitude as well. This infrared studio offers HIIT (High Intensity Interval Training) workouts, strength training, and various options such as yoga, Pilates, and barre. This studio provided the first consistent method for sustaining an activity that enabled my body to begin losing weight and regaining strength and muscle tone. More importantly, when I attend, I feel revitalized both mentally and physically.
With summer approaching, I sought a new physical goal, one that felt uncertain yet invigorating. I decided to register for an Olympic distance swim/bike duathlon in July. A significant motivation behind this decision is to raise awareness for dystonia.
I’m actively engaging with various companies to secure donations for ‘Beat Dystonia,’ a non-profit organization led by Rogers Hartmann, who played a crucial role in my early journey and helped me secure long-term disability when it seemed I might be denied. I’m also brainstorming ways to share my story, aiming to connect with others who may be struggling undiagnosed and to foster compassion for those exhibiting symptoms of dystonia.
I am immensely thankful for podcasts like “The Positive Twist,” along with other podcasts and non-profit organisations dedicated to raising awareness and funding for research while sharing stories that educate others about this “rare disease.”
