For the first five years after your diagnosis of cervical dystonia (an involuntary contraction of neck muscles that causes the head to twist to one side), you were almost paralyzed by depression. How did you overcome it?
I worked with several doctors to find the right treatment, including Botox, but nothing seemed to help. And the pain was so bad, I would sleep most of the day and drink at night to take the edge off. My routine helped me tolerate the pain, but I gained 150 pounds. Then I came down with a stomach virus and couldn't eat or drink for a week. After years of dystonia symptoms, a simple stomach virus was the turning point. I realized I was slowly killing myself. I could either continue or become as healthy as possible. Here's my window, I thought. Don't let it pass!
What did you do first?
I stopped drinking and started moving. The first time I walked, I went 50 feet. The first few weeks, I walked with my parents to the end of the driveway. Then with their help I was able to walk to the end of the street. The day I walked to the end of the street on my own was amazing. Over the next 10 months, I progressed to two miles twice a day. With that and eating and managing stress better, I lost 150 pounds.
How did you treat your dystonia?
Aside from medication prescribed by my neurologists—I still take diazepam (Valium) and the muscle relaxant baclofen—I started doing specific stretching exercises and very light free weights and resistance bands, along with massage and trigger point tools, to retrain my muscle movements. I also became more mindful of my posture, always making sure I was straight, upright, and centered whether I was sitting, standing, or lying down. I took up meditation and breathing exercises, which helped ease my anxiety and change my perspective.
What else helped?
I got involved with a dystonia organization and was asked to share my story in its newsletter. The response was overwhelming. I became immersed in the dystonia community. I started my own support group and began hearing what others were going through—everyone's journey is unique, and what works for me may not work for others—and helping them by sharing my own experiences.
How is life for you now?
I am a life coach and a self-published author of a book about coping with the physical and emotional aspects of this condition. To function optimally, I am acutely attuned to my body. I let it direct my level of activity and whether I need ice packs, heat pads, stretching, exercise, or rest. At first it was hard to rest, but over time I realized that when my mind is relaxed, I am more productive.
What is the status of your dystonia?
I still deal with some pain and muscle spasms, and I have some balance problems, but it's so much better.
How else do you stay positive?
I'm grateful for everything I've experienced—even the really tough stuff—because I've learned something from all of it.
