Shaun Lowecki – focal dystonia story

shaun-lowecki

My name is Shaun Lowecki, I was born in Libertyville Illinois, and I’ve been playing the drums for 21 years. After my formative years in the suburbs of Chicago I was accepted into the jazz program at the New School University in Manhattan. In 2006 I transferred schools and graduated Cume Laude with a Jazz Performance Bachelors Degree from Arizona State University. During my 21 years as a drummer I have been awarded a scholarship to the Dave Brubeck Summer Jazz Colony, I have been on National, North American and Asian tours, I have played at South by Southwest, I’ve performed twice on KEXP for in studio performances, and I have been invited twice by the city of Grenoble to perform at international music festivals.

For 16 years I played the drums with joy, hope and excitement. Then in late 2010 after performing at Jam Sans Frontiere in Grenoble, I started to experience an unfamiliar feeling in my right hand. At first it was uncomfortable, then tense, and then I began to lose strength and control at the sticks point of contact in my right hand. That Summer I was practicing more than usual and serving coffee in a local shop which was a perfect combination for an overuse injury. Tension, fear, anxiety and obsession built and by the end of the year, although I didn’t know it at the time, I was dealing with Task Specific Musicians Focal Dystonia.

A Search for Medical Solutions

2011 was the year of searching and unknowing. My symptoms, which started with tension, began in late 2010 and by the beginning of 2011 I had lost all control of my right hand. I was panicked and didn’t understand why I couldn’t move the way I used to. I had intense involuntary spasming which worsened with frustration and anger. I experienced aggressive clenching and compulsively contemplated my fulcrum. I developed severe fear and anxiety and I began searching for an answer. I spent the better part of this year seeking out specialists to help find a solution. I saw a Chiropractor, I worked with an Acupuncturist, I visited an Orthopedic Doctor, I had Massage Therapy, I attended a Physical Therapy course, I studied the Feldenkrais Method and I nervously searched the internet for an explanation. Unfortunately none of the specialists I saw had an answer for the spasming or loss of control.

Not understanding what I was experiencing was an incredibly desperate feeling. As a result, my behavior became more obsessive and compulsive. I incessantly thought about my hand and when I couldn’t control my movement I became intensely frustrated and spun further down the hole of obsession and compulsion. I was trying to regain control by thinking more about my hand which I later learned was the opposite of what needed to be done. The problem consumed my life and every waking and subconscious thought revolved around my hand. It took over my life to a point where I wasn’t present in conversation. I felt frantic.

Then suddenly, after traveling to Chicago for the Christmas Holiday, I came across this website, and Jon Gorrie’s story. The things he described were exactly what I was experiencing. I was certain that I had focal dystonia. That holiday weekend I scheduled an appointment with a neurologist and sent Jon an email.

Diagnosis

After finding Jon’s website I started researching focal dystonia and what I began reading scared me. I learned that Dystonia effects a very small percentage of people. I learned that the common misconception is that there is no cure and I feared that this would end my musical career. I couldn’t believe that I may be experiencing this rare neurological condition. Then in February of 2012 I was diagnosed by an M.D. of Neurology in Berkeley CA with Task Specific Focal Dystonia and Essential Tremor. I experienced a mixture of emotions. I was first relieved that I had a diagnosis. Then I again experienced fear. I was frustrated and unsure if I would be able to recover. But my only option was to continue forward. I set up a session with Jon and decided I would do everything I could to rehabilitate.

February 1, 2012

Hey Jon,

I found your article and read your beautiful story, it is encouraging! I have been dealing with hand and arm problems since October of 2010 and finally went to a neurologist on Monday. He diagnosed me with focal dystonia and essential tremor. I have been fearful of this and have been experiencing symptoms for a while. I understand the intense emotional correlation with the muscles which make everything spasm and unable to control. I would love to talk to you more about this and pick your brain about how to overcome it. I accept the fact that I have this issue, but I will not accept that this is forever, which is hard to believe sometimes. Hope you’re interested in talking and sharing your information.

Best,

Shaun Lowecki

Recovery

Beginning in 2012 I was determined to relieve my tension. I was filled with a mixture of emotions including fear, self doubt, some hope, frustration, anger and depression. In February I started working with Jon and was coached by him on a regular basis for the next year and a half. Along with Jon I began seeing a psychologist on a weekly basis. These two people helped build the spring board to my recovery and I credit both equally with their expertise. When I began working with Jon I was nearly hopeless but excited to have a mentor. Together we worked through some of the confusion and frustration I had been dealing with and he taught me a variety of techniques to help alleviate physical and mental tension.

My therapist helped to unravel obsession, compulsion and depression on a psychological level. The majority of 2012 and 2013 were spent deep in practice and striving to recover. I muscled through all performance and recording situations and experienced a roller coaster of emotions. Sometimes it would be so bad that I would fantasize about giving up. Other times I would feel immense joy and elation for the progress I was making. I worked daily to recover and experienced many ups and downs. I made great strides then out of nowhere my hand would fall apart completely. It felt like one step forward and two steps back. But I continued. I switched my grip and played traditional in my right hand which I did diligently for over a year and a half. Then early in 2014 I became the touring drummer for Painted Palms. I was still experiencing involuntary spasming but it was getting better all the time. I played with the new right hand traditional grip technique on jazz gigs and while on tour with Painted Palms. It looked unusual but I had control. My hand continued to get better and in February of 2015 while walking with a coffee in New York City I realized that it wasn’t shaking. I looked down and voila, no spasming.

Previous to this I couldn’t hold a glass without shaking uncontrollably. This realization that the tremor could go away was the catalyst to believe that I could recover. From that day forward things got better and better until one day in late 2015 while on tour in Japan, I decided to switch my right hand back to match grip. I was shocked by what I felt. I had regained control.

The time spent working with Jon, my therapist and by exploring my own techniques had paid off. Since late 2015 I continued to strengthen and I applied everything I had learned from my mentors and from my own exploration. This October 2016 marks the end of my focal dystonia and a full and successful recovery. I have regained all control and experience freedom of movement and expression.

Today

Over the course of my rehabilitation I learned many techniques to deal with the ups and downs of dystonia. I had to retrain the way I approached drumming on a physical, mental and emotional level. In conjunction with my mentors, I discovered my own approach which ultimately led me to a full recovery. There were times when I wanted to quit. There we’re times when I doubted I’d ever improve. There were times when I couldn’t handle the intense emotional roller coaster. But looking back on the struggle, I can say that I am grateful. I have become a stronger player because of dystonia and look at it as a positive experience.

I am now living in New York City and am free of tension. I can control my hand, I can choose not think about it, and I am stronger because of the experience.

If you are suffering from TSFD, know that it is a curable condition. If interested I offer video coaching sessions and am thrilled to help share techniques for recovery.

To contact Shaun, send him an .

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