Thursday, July 17, 2014

Dear Diary: If There’s No Cure for Dystonia, How Do I Explain…

There were a few reasons why I stopped blogging about dystonia, but one reason was because I couldn’t explain how I was able to relieve my symptoms. After years of research and plenty of doctor visits, I knew that dystonia was an incurable disorder that is only maintained by medications. I also knew that it is defined by sustained muscle contractions that remain despite input from the brain. 

How then did I explain my symptoms, which at that time progressed from permanent dystonic state to the occasional flare up? I couldn’t. 

So for three years, I avoided the questions of how I was doing, so that I would not have to tell people the truth: I was doing well. It’s not that I didn’t want them to know - it’s more because I did not have an answer for how I did it. 

So now, I am reconsidering that decision. Instead of hiding my experience from those seeking information, I am going to share it. There’s just one caveat. I still do not know whether my drastic decline in symptoms was caused by my actions, a buildup of all the medicines I had taken, a change environment, or even just luck. 

So, consider my experience with a grain of sand. 

My hope is that you may find some relief in what I did, or possibly give insight about why it might have worked. 

I will be sticky posting this information as a page, so that it easy to find.

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