Dystonia

Part of my daily life for 10+years now.

Dystonia is a disorder characterized by involuntary muscle contractions that cause slow repetitive movements or abnormal postures. There are several different forms of dystonia that may affect only one muscle, groups of muscles, or muscles throughout the body.

I have a focal form of dystonia called cervical dystonia -the muscles in the neck that control the position of the head are affected, causing the head to turn to one side or be pulled forward or backward. Sometimes the shoulder is pulled up. It is painful.
Cervical dystonia can occur at any age, although most individuals first experience symptoms in middle age.

The cause of dystonia is not known.

Currently, there are no medications to prevent dystonia or slow its progression.

But I am so lucky. The diagnosis took a long time but the treatment (shots) I receive every 3 months in my neck keep the symptoms in check and so my disease is not even noticeable 99% of the time. There are times, towards the end of the 3 months (especially after a long, stressful day) that close friends and family can see the subtle twisting of my head as the symptoms return. But the shots do work for me. The shots do not work for all people with the disease.

I hesitated to post this.
But it is a part of who I am.
It crosses my mind daily.
It colors the lens through which I see life.