I have had Secondary Dystonia for twenty years now. Dystonia is a movement disorder that causes the muscles to contract and spasm involuntarily. The neurological mechanism that makes muscles relax when they are not in use does not function properly. Opposing muscles often contract simultaneously as if they are ‘competing’ for control of a body part. The involuntary muscle contractions force the body into repetitive and often twisting movements as well as awkward, irregular postures. There are multiple forms of dystonia, and dozens of diseases and conditions include dystonia as a major symptom.
Dystonia may affect a single body area or be generalized throughout multiple muscle groups. Dystonia affects men, women, and children of all ages and backgrounds. Estimates suggest that no fewer than 300,000 people in North America are affected. Dystonia causes varying degrees of disability and pain, from mild to severe. There is presently no cure, but multiple treatment options exist and scientists around the world are actively pursuing research toward new therapies.
Although there are multiple forms of dystonia and the symptoms of these forms may outwardly appear quite different, the element that all forms share is the repetitive, patterned, and often twisting involuntary muscle contractions.
Dystonia is a chronic disorder, but the vast majority of dystonias do not impact cognition, intelligence, or shorten a person’s life span. The main exception to this is dystonia that occurs as symptom of another disease or condition that can cause such complications. (From Dystonia Medical Research Foundation website)
At the age of three, I got Rocky Mountain Spotted Fever which was misdiagnosed and unfortunately caused brain damage. The doctors said I would be 100% in a year, but they were wrong. My whole families lives were turned upside down when they learned I would never talk with my mouth again or live a “normal’ life like many of my friends. As I look back on what God has allowed in my life, there were good and bad days, physically and spiritually. For example, going to school for half a day was very hard, especially in sixth grade and until I graduated. During these years my eyes started to get really tight. This was a new part of my journey with Dystonia. It was called , Blepharospasm which is a focal dystonia that affects the muscles of the eyelids and brow.Symptoms include increased blinking and involuntary closing of the eyes.Blepharospasm may be primary or secondary.People with blepharospasm have normal vision. When vision is impaired, it is due solely to the forced closure of the eyelids.
To help my spasms I get 16 Botox shots around my eyes. The Botox last about 3 weeks then I start getting tight again. I get Botox every three months. I also get them in my jaw and right arm and hand.
I still get frustrated with my Dystonia now and then. “For I have learned, in whatever state I am, therewith to be content.” Philippians 4:11b God has and always will be with me through every trial I go through. I hope this helps others understand more about Dystonia.