Living with Dystonia


I’ll never forget that day in the 7th grade when I would turn around at my desk and seemingly every muscle in my neck and shoulders locked up. Most of us will experience generalized muscle cramps; cricks in the neck & Charlie horses. I thought this was similar until days later with doctors’ treatments I wasn't any better. Muscle relaxing and anti-inflammatory medications eventually gave me some degree of relief, but it was always there and easily aggravated. By the time I was in my late teens, dealing with chronic pain became a way of life. The burning, the pulling, and the limited range of motion in my muscles had become commonplace. The most accurate description is a hot knife, stabbed into my body and continually turned and sometimes-specific areas of muscle spasms would last days and weeks at a time.

All my years of ministry up to that point were usually pain ridden because of the exertion that takes place during a performance, especially sitting at the piano. I use the word exertion because if you have experienced one of my concerts and/or speaking engagements you know I work diligently to bring the goods to the table so to speak. 

I lived with this unknown disease until I was 29 years old. Finally, I found a doctor who diagnosed me with cervical dystonia coupled with spasmodic torticollis, which is two or more muscles in the neck simultaneously contracting pulling against each other. The course of treatment for the next several years would be Botox injections. This would almost force stop the movement of the muscles, therefore reducing spasms. 

Playing the piano at length had been difficult for several years. With the Botox injections, playing was limited to a couple songs. About the time I was regaining movement another round of injections were due. 

Then in 2010, at 36 years old, what was I to do? Would I have to accept this as way of life? 

That spring I would find myself on a flight from Nashville to Cleveland, OH seated on the front row next to a young man, about ten years younger than I. We talked about careers, travel, marriage, and children. He said, “You need to have another child” to which I replied, “I’m not able to do that”. He thought I was joking but I wasn’t. I said, “I have dystonia.” I continued to share that performing daily tasks for Emme and routine chores around the house were limiting more each day. He looked at me and said; “You know they do brain surgery for that? It’s called deep brain stimulation (DBS). My wife works as a neurosurgeon assistant at the Cleveland Clinic. I’ll email you the information.” 

I took this to my doctor. He knew of the surgery but had not told me about it because typically this is reserved for patients who were becoming or were incapacitated. He concurred current treatment wasn’t working and pain levels were escalating again. Within a week or so, I was referred to a DBS surgeon in Louisville, KY, Dr. Todd Shanks. Three weeks after that I had the 1st of 3 surgeries. By mid November the DBS was activated, and just days later I played a piano show in Nampa, ID. I sat at the piano and played my heart out for almost 2 hours without any pain! It was incredible! I had finally felt what I thought would never be! Today, more than 90% of my days are pain free! And again, “it’s all good”!

As Fanny Crosby wrote, “This is my story, this is my song. Praising my Savior all the day long.” This is the Gospel Experience!

Read more about dystonia and DBS: Dystonia Foundation

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