September is Dystonia Awareness Month

My dystonia journey

I find it to be serendiptous that I woke this morning and stumbled upon the fact that September is Dystonia Awareness Month and also felt that today would be the day for my for my first post.

So, hello there, I’m Jade. I have I’ve hidden for so long, only sharing my struggle on an as needed basis. I’m finally ready to share my story and hopefully encourage others on their journey with dystonia or with loved ones who live with it everyday.

What is dystonia?

In the spirit of awareness month, let’s define it. According to the Dystonia Medical Research Foundation, dystonia is a neurological disorder that causes excessive, involuntary muscle contractions. The contractions result in abnormal muscle movements and body postures, making it difficult for individuals to control their movements. Dystonia can affect any part of the body including the eyelids, face, jaw, neck, vocal cords, torso, limbs, hands, and feet. And beause it’s so varied it can look different from person to person.

What does dystonia feel like?

In the beginning, it was just the twitching toe for me. Then gradually, all the toes on my right foot would curl down, next my ankles would twist inward and my calves would tighten. As it progressed, my symptoms became a bit more symmetrical so the same thing happening on the right side would happen on the left side. Sometimes I would be fine and sometimes I could barely walk or move. At other times, my muscles feel like heavy knotted ropes and all of it was and still is painful and completely debilitating. It’s not an easy life. No one would choose it but it’s chosen me and the experience has made me a more patient and compassionate person. It has shown me how resilient humans are and through it I’ve met some amazing people. For that, I am forever grateful.

Who does dystonia affect?

Dystonia isn’t well known but it’s the leading movement disorder behind essential tremor and Parkinson’s disease. An estimated 300,000 people in the United States have been diagnosed with dystonia and doctors and communities around the world are working together to find a cure.

Do you have experience with dystonia or know a loved one who is affected by it. What’s something you want to know or wish people knew?