I have had Secondary Dystonia for twenty-five 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 suffered from an undiagnosed case of Rocky Mountain Spotted Fever which caused brain damage. The doctors said I would be 100% in a year, but they’re hope proved 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 30 Botox shots around my eyes. The Botox last about 3 weeks then I start getting tight again. I get Botox every two 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.
Here’s another post that portrays my view of Dystonia. I wrote in 2015 called The Power of The Lord.
I hope this helps others understand more about Dystonia.
6 thoughts on “What is Dystonia?”
God bless you.
May God bless you. I have cervical and generalized dystonia and just started my first time of injection of Botox treatment. I’m am hopeful of a one day cure of this terrible diease. I am having neck and throat spasms as well this throat tightness is new. I hope and pray for each of you that have this as well. God will see us through. Thank you Jesus for dying on that cross for me.
Every trial you conquer make you a stronger person.
God will be with you forever helping you to cope.
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Thank you for sharing, Abigail. It must be so hard to live with. Despite it being many years now, I don’t think it is something you get used to, like my condition – it’s my new normal, but that doesn’t minimise it’s implications and the frustration it causes on a daily basis.
As I was reading about the spasms, I was wondering about botox. I’m glad it’s helping you! I worked with disabled children before I became disabled by ME/CFS and one of my children had Cerebral Palsy which made his muscles tighten up so much! He also had to get botox to help ease them – it didn’t help him much though, trying to straighten his arms for physio was very hard work and I’m sure it wasn’t pleasant for him either.
Your faith shines strong through your writing. You have an amazing story and I look forward to reading more of your posts.
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I admire how your faith in the LORD is a primary focus throughout and you’ve had to conquer many trials and tests. Keep being a fighter and overcomer… Proud of you!!
I’m so glad I met you, you are so bright and your faith is beautiful. God bless you! I’ll see you at church!