Introduceyourself
For now, just a brief introduction to Dystonia.
If you know someone who suffers from this you may know the agony they are going through. Firstly, dystonia is an umbrella term for most conditions that cause involuntary loss of muscle control. So not only will your muscles not obey the commands your brain is sending them. Your muscles will just make up what ever they want to to do, generally to embarrass you.
Parkinson's falls under this category, however it is usually listed separately because of its huge noterity. Thank you, Michael J. Fox. But there are many forms of Dystonia depending on the muscles you lost control of.
Cervical dystonia(CD) is your neck and back muscles where your head will constantly want to twist in spasms or constantly. Mine is constant, without my DBS brain surgery, a later discussion, my head would twist to the left and up and my muscles would be very sore from the constant pulling.
Blepharospasm is forced eye closing. Some people will blink a lot. For me my eyes tend to clamp shut. Rendering me blind momentarily. For some people they can become blind even though their eyes still work, but they just can't open their eye lids. My botox shots I get into my eye lids, every four months. Which for the record, sting and hurts like hell. (women, how you do this; just to avoid crows feet, is beyond me.) Helps with my eyes from closing shut. Not fun to have Blepharospasm storms while driving. So I help mitigate this by having extremely dark tint on my car and keeping dark sunglasses in my car.
Then there is Oromandibular dystonia(OMD). This hits your jaw, neck(swallowing muscles) and tongue. This is the one that stole my voice from me. It robbed me of a career I truly loved. The saying, "Do what you love and you'll never work a day in your life" . Is true! God I loved IT training. I was also damn good at it. And the rest of the sayings are also true. The money will follow. And that it did for 10-15 years I was on top of the world. Jet setting across the country empowering hundreds of students each month to change their lives to improve their skill levels. But in a matter of a six-nine months my voice just went from stuttering to not being able to get a word out.
Oromandibular also impacts your swallowing muscles too. And for more fun you lose control of your tongue muscle to so you can't move food around to chew it into smaller pieces. I've almost choked to death about 4 times. So eating now sucks. Hard for a steak lover to hate dinner time. But I dread eating every meal of every day.
For those keeping score, I have all 3 dystonias and Parkinson's for good measure. The problem for those new to this disorder is you or they probably don't know you have it. Because only a neurologist trained in muscle disorders will recognize it. Most symptoms can be written off as TMJ or psychosomatic.
I think I'll try to document and inform followers what I've done to try and cope with my disability. And I'll talk about the treatments or lack of. Like DBS brain surgery and botox shots.
Thanks for letting me vent.