This is my dystonia story over the past five years that went from blepharospasms (eyes) to generalized dystonia head to toe. Dystonia is a tricky neurological disorder that affects everyone differently. So, what is dystonia you may ask. That’s a hard thing to explain. My explanation is a disconnect with the neuron pathway that won’t let me move the way I want. For instance, I can’t control my right hand to type or write because dystonia has overridden the muscles to constantly seize in an extended posture that causes pain in my hand that goes up my wrist and arm.
Here is an official explanation “Dystonia is a disorder characterized by involuntary muscle contractions that cause slow repetitive movements or abnormal postures. The movements may be painful, and some individuals with dystonia may have a tremor or other neurologic features. There are several different forms of dystonia that may affect only one muscle, groups of muscles, or muscles throughout the body. Some forms of dystonia are genetic but the cause for the majority of cases is not known.”
I HATE when people tell me “you look good today”. Maybe I’m having a good hair day, or my makeup is on point. That doesn’t mean I’m having a good day. My struggle and pain aren’t always visible, and I feel it’s demeaning when people assume I look good, so I must be having a good day, UGH! Ok enough fussing. On with my story.
Towards the end of 2013, I started to get sticky eyes. When I blinked my eyes, they didn’t always open without the help of lifting the lid with a finger. One day in January 2014, I was getting ready for work when my right eye closed and wouldn’t stay open when I lifted the eyelid. This caused a depth perception issue and I couldn’t drive like that. I headed to my family doctor. Luckily for me, he sent me to a movement neurologist. That’s when I learned I had blepharospasms, which is a technical term to say I no longer had the ability to open and close my eyes and at times I have excessive blinking. I started getting Botox injections to partially paralyze the muscles, so I can keep my eyes open. No biggie, I got this with the help of injections every 12 weeks…or so I thought.
Me Myself and My Dystonia 