National Dystonia Awareness Week is June 3rd through June 11th. What? You've never heard of Dystonia! Well, neither had I until I was diagnosed with it eight years ago.

Dystonia is a movement disorder with no known cure. It ranks right behind Parkinson's Disease and Essential Tremor as a movement disorder. With Dystonia, an area of the brain, called the Basal Ganglia, is misfiring. The misfiring of that particular area of the brain sends signals to muscles saying that there is a problem. The muscles respond by involuntary muscle spasms, or uncontrolled muscle contractions for people suffering with Dystonia. These involuntary muscle movements can cause jerking and/or sustained twisting of the body.

There is an extensive variety of symptoms and characteristics with Dystonia and each person that has been diagnosed with it is unique with their symptoms. There are approximately 13 different forms of Dystonia. Dystonia can affect one particular muscle group or several different muscle groups at one time. It does not discriminate either. It can affect men, women, and children of all ages and backgrounds. There are an estimated 300,000 people within the United States that may be affected with Dystonia.

There is no single diagnostic test for Dystonia. Doctors must be able to recognize the physical signs and also be familiar with the symptoms. A Movement Disorder Neurologist is generally the best to identify Dystonia. For many years I had been having neck problems and it took such a specialist to diagnose me with Dystonia: but it was not until my left shoulder had started rising up and my neck started twisted so that my head was turned towards the left and my chin was up in the air that I was sent to see a neurologist.

I was put on various medications and a year later began receiving Botox injections in my neck and shoulder muscles. Yes, the same Botox that people take now for wrinkles. Botox was first used to help crossed eyes and uncontrollable blinking (The FDA gave their approval on Botox for medical reasons in 1989 and for cosmetic reasons in 2002). My Dystonia progressed from just my neck (focal) to my right side (hemi). Medications were no longer affective so my neurologist asked me to consider a procedure called Deep Brain Stimulation (DBS).

DBS is a procedure that involves having electrodes implanted in the brain and a device similar to a pacemaker implanted just below the collar bone. Wires placed under the skin connect the pacemaker (a pulse generator so to speak) and the electrodes. The pulse generator is then programmed to send continuous electrical signals to the brain to block the misfiring of the Basal Ganglia. This is not a cure for Dystonia but allows for the muscles to stop spasming.

I had my surgery in 1996 and it has done wonders for me. One of the first things I noticed was the lack of the constant pain from muscle contractions. My head was almost straight and my right foot did not curl in anymore. My right hand did not contort from trying to write or use a knife during a meal. I can vacuum without going into neck spasms after a few minutes.

P.S. Jenny Craig (of dieting fame), Leon Fleisher (concert pianist), Lynn Johnston (creator of the comic strip For Better or For Worse), and Rem Murray (the NHL player) are just a few celebrities that suffer from Dystonia.