Hi, Dorothy,
I too have genetic dystonia and my symptoms started very early but similarly were undiagnosed. I was labeled clumsy (falling and tripping) and boy when I got to school and we had to color those ridiculous cartoons of animals, I could not color inside the lines. I couldn't hold my head straight so was also labeled sneaky. I couldn't hold a pencil or crayon without snapping it because of muscle surges and was labeled TROUBLE. I was told to just try harder and practice writing the alphabet a 1,000 times and my script would improve, as if! So when I found computers, which because my life's work, I was saved! Before I took control of my own life which included the insight that dystonia is forever and no amount of praying, meditation, thinking good thoughts or exercise will make to go away, I was suffering. I started reading everything I could find and combing the research archives. I just had to push through life. To control tremors I had to lay my head on the desk and write. This trick worked to enable me to succeed at school and work.
There are all kinds of dystonia and you are right, it takes a neurologist working with the patient to find the best medication regimen and treatment plan; because these vary. Because my treatment is so effective only I know that I am working so incredibly hard to make my body behave; although, one of the doctors at the medical center where I live told me I am what they identify as severely disabled. Another equates dystonia s working out at the gym all day while trying to have a life. Nobody can tell because I absolutely own it and have mastered all of the tricks we teach ourselves and am appropriately medicated because I asked for different protocols until I finally found something that works and have a very caring neurologist who worked with me. Doctors are always looking for ways to treat this disability and sometimes its a success. Research is being funded finally and today when I say dystonia most doctors do know. In the past they would just say oh yeah Parkinson's. I would correct them and call it a teaching moment and educate them. Before that people were put in state institutions for these movement disabilities. I tried the Botox and I drooled. Not a great fashion statement🥳. I finally looked back through all of the research and found the carbidopa-levodopa myself and asked for a two week trial. I agree with you, Dorothy, I recognize dystonia in others too and sometime I ask and they know they have it and sometime they don't and are just suffering in denial. We often stay closeted because of the stigma. Oh yeah I have the type that worked its way up over my lifetime from my feet to my throat and didn't miss a single system as the years passed. I consider it my wicked task master and my education in compassion. I think owning it and mastering it with meds, behavior or changes in life style can work. And ultimately accepting that dystonia is for life. Do what you can and never take any crap about what you can not. My face will never light up when I see a loved one but then I don't have a single wrinkle 😉!
DD