The process to get diagnosed was a very long one.
It was over two years that I first started seeing a neurologist regarding the concerns and issues that I was having at the time, and I was experiencing things like the pen in my hand just felt awkward, it didn’t feel right, I couldn’t hold onto a drumstick, I couldn’t grasp things very well.
I noticed that my hand would cramp up when I would write. I noticed that my daughter, my eldest daughter, started writing better than I could, and I just needed answers as to why all this was happening. They were going through all these different types of possibilities and hypotheses and theories of what was wrong with me and it was a very challenging thing because they kept bringing up things like Huntington’s disease and Wilson’s and MS all of which don’t end very well.
I just had to let him go, I told him I needed a second opinion. When the second neurologists performed their tests and did their research and they came up with my diagnosis of dystonia there was definitely a lot of relief there knowing that it was something that wasn’t going to kill me.
Patiently Proud, a Marathon with Dystonia
Nolan Discusses Dystonia Treatment
