WHAT IT’S LIKE to LIVE with a Movement Disorder

So, I am still praying and believing that one day soon I will be relieved of these tormenting tongue, neck a mad esophageal spasms. Those of us who endure a movement disorder are still misunderstood. Despite the plethora of information on the internet, Dystonia and Parthenon’s organizations, people are still suffering. My prayer is that as you read this blog, and watch the videos, you will grown in hope for your healing.

Movement Disorder sufferers endure by living each day hour by hour. There are so many stressful variables relating to a Dystonia or Tourette’s Syndrome life. The main one is struggling to maintain normalcy, productivity and creativity. There is also the physical aspect of the non-stop spasms that cause me exhaustion by mid day. The second issue is the great expense of obtaining a diagnosis and treatments. Since 2007, our quest for a cure for the Dystonia has cost us over 30,000 dollars. We have spend untold thousands of hours also in research with little results.

There is also the emotional aspect of isolation, shame, and loneliness. As an aspiring singer-songwriter, hoping to establish a rewarding music career and ministry, I was bubbling and loved to be around people. I was well-respected and in-demand at fine dining establishments and wore beautiful evening ware to perform my jazz standards repertoire. I also loved he physical challenge of delivering my phone books during the day where I made my own hours and was an independent contractor.

In 2007,, Dystonia started to unravel my life after the visit to a local dentist who extracted an amalgam filling from the troublesome back molar. That lead to rabbit holes unfathomable and untold misery/

We came upon a YouTube video about a Dystonia doctor who had success with many Dystonia and Tourette’s I contacted the doctor and he prescribed an acrylic mouth appliance that was supposed to help realign my bite and restructure the jaw nerves, Sadly, the appliance didn’t work for me. for after several months, my jaw spasms were so violent that my own back molars wore down almost to my gum line and eating or drinking any very hot or very cold food was so painful. I also bit m y tongue, till bleeding and the sides of the mouth because the bite shifted so much since not wearing my mouth appliance.

After 15 years of suffering ever debilitating symptoms, my search for even minor relief grew more urgent. I continued to invest innumerable hours online, studying and researching ( knowledge is power) medical websites regarding the anatomy of the jaw, brain physiology and the relationship between the gut and the brain, I deduced that Dystonia and other movement disorders could be affected by one or all of the aforementioned variables. I must admit, as I gained more knowledge about how the brain, neurotransmitters, hormones and immune system operates I was sure toxins and/or spinal-cranial dysfunctions could contribute to a movement disorder. I also felt a deeper empathy and desire to love on and share pertinent information with people suffering from incurable diseases and afflictions.

As I bring this blog to a close, I ask you to have an open mind to all possibilities of restoration and healing. There are a few options for Dystonia and Tourette’s Syndrome.: DBS Deep Brain Stimulation, ( a very complicated and serious surgery) . Not interested in having my head cut open. There are monthly injections of Botox to deaden the nerve. There is also Jesus, the Healer and deliverer. Following Him has shown me that he performed many astounding miracles including an epileptic boy in the Gospel of Luke 9 40-44. Jesus healed me from Lyme Disease and from Carbon Monoxide poisoning and I believe He will heal me from Dystonia also!

He has been faithful to me since I gave my life to Him in April of 1982. He has done amazing things in my life and in the people I’d ministered to in hospitals, in maximum security prisons, after my Gospel concerts and even at funerals and to people on their death bed.

With this condition, I have many days of being almost overwhelmed with grief, hopelessness and/or exhaustion, but my lifeline is to my ever- present and everlasting hope, Jesus Christ. He gives me the strength to continue singing and playing my guitar and especially to love on people regardless of how I’m suffering.l

My next assignment from Jesus i to record and produce a special video addressing the plight of precious sex-trafficked children. Jesus gave me the courage to pursue this project through Maura, head of Student Film Makers website. Though my spasms embarrassed me, I wish to encourage you all to pursue your dreams and don’t allow anything or anyone to deter you from achieving God’s wonderful plan for your life!I

Do our research, seek out doctors and treatments, but also consider Jesus.