Losing 150 lbs and Living with Dystonia

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In the summer of 2001, my neck muscles began to involuntarily contract, causing my head to pull to the right.

I had no idea what was wrong. My doctors were also baffled. No one knew how to help so my symptoms kept getting worse. I searched the internet like crazy and finally discovered dystonia, a neurological movement disorder. A neurologist specializing in movement disorders made the official diagnosis. It was a relief to know what was wrong, but scary to think of what lied ahead.

By the time I was diagnosed, I was in extreme pain and disfigurement and pretty much unable to do anything on my own.

My head and neck were locked towards my right shoulder andTom Seaman heavy 1 the muscle contractions significantly worsened with any type of movement. I had to drop out of graduate school, quit my job, and move in with my parents because I had become disabled to the point that I could not function without their help. I felt immense shame.

I tried a variety of treatments, none of which were of much help. I fell into a pit of depression, became very isolated, experienced severe anxiety and panic attacks, drank alcohol to help reduce the pain and muscle contractions, and had an awful diet. Within 5 years of my diagnosis, I gained around 150 pounds due to my unhealthy, sedentary lifestyle. At well over 300 pounds, I didn’t recognize myself. Life was anything but fun!

Tom Seaman heavy 2In December 2006, I caught a stomach virus and was sick for almost 2 weeks. During that time, my dystonia symptoms subsided a little and I lost about 15 pounds. While getting sick was not the type of motivation to change I would have chosen, it was exactly what I needed. It was a wide open window of opportunity and I jumped through it. I knew if I didn’t, I would eventually have more serious health problems.

I changed my diet and began exercising (for weight loss and to help manage my dystonia symptoms). I changed what I ate and when I ate, I cut back on the amount of food I ate, and I walked everyday. I started out by walking to the end of my driveway, gradually increasing to 2-3 miles twice a day. By October 2007, I lost all the weight! In less than a year I was back to a healthy 185 pounds for my 6’ 2” frame. I also found some effective ways to better manage my dystonia.Tom Seaman thin

People often said to me that I must have a much better attitude after losing all the weight.

My response was, “Getting a better attitude is what motivated me to lose the weight.”

My attitude was certainly better and I absolutely felt better about myself, but had my attitude not changed prior, I never would have been so determined to take the necessary steps to lose the weight and better manage my dystonia symptoms.

I still have problems with my neck and back from dystonia that prevent me from doing certain activities, but life is so much better! I have maintained my weight and my symptoms are night and day compared to the horror I once lived. I used to essentially live on the floor, writhing in pain, feeling completely worthless and depressed, unemployed, morbidly obese, and totally dependent on the help of others. I didn’t want to wake up in the morning because I didn’t want to face the constant physical and mental pain. Now I am at a healthy weight and in much better control of my dystonia to where I can live a more normal life with passion and excitement.

My journey with dystonia and weight issues led me back to school in 2010 where I became a certified professional life coach so I could help others with their health challenges. Then in 2015, I published a book called Diagnosis Dystonia: Navigating the Journey. I wrote this book to give others hope and inspiration, as well as guidance for how to better cope with a life altering chronic condition.

I have been faced with major challenges throughout my adult life. What helps me jump over hurdles is my belief that everything has a solution. There is nothing that can’t be altered to improve our quality of life. Obstacles provide us with opportunities to grow and become better people, and every day I am grateful for the chance to help myself and others achieve their personal best.

Tom Seaman Headshot (2)About the Author: Tom Seaman is a dystonia awareness advocate and certified professional life coach in the area of health and wellness. He is also the author of the book, Diagnosis Dystonia: Navigating the Journey (2015). To learn more about Tom and get a copy of his book, visit www.diagnosisdystonia.com. Follow him on Twitter: @dystoniabook1 and check out another article of his on Patient Worthy here.

Comments

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6 COMMENTS

  1. Love your story . My cervical dystonia led me down the ” being a holistic nutritionist ” path. I find excersise and food play a huge role in pain management . The less you move the more pain there seems to be. Yoga . Weight lifting , mountain biking and kayaking are my best friends. So happy you found your path xx

    • Thank you very much and I am so happy you have had such success managing your symptoms and enjoying all of those activities! I agree with you and think one of the best things for a movement disorder is movement 🙂

  2. While I have cervical dystonia also, my symptoms do not seem to be as extreme as yours. But my sedentary lifestyle along with poor eating habits and too much alcohol have caused my weight to balloon. We are starting a much healthier diet and I have purchased an exercise bike to begin getting back into shape as that seems to be easier on my knees. I hope to have an inspiring story to share also but still working on the mental part of getting myself where I want to be. Thank you for sharing yours.

    • Hi Terri- Thanks for the message. It is so easy to get caught into that sedentary life when we have pain, no matter the severity which is not worth comparing because it is debilitating no matter how ‘bad’ one has it. I wish I cut off my unhealthy lifestyle much sooner so I did not balloon up as much as I did and allow my dystonia to get out of control, but I have to be honest and say that had it all not happened, I don’ think I would have been as disciplined and remain dedicated. No doubt you will have an inspiring story (you probably already do!), and I look forward to reading it one day. If you are interested, my book goes into great detail about the mental aspects of living with dystonia. If you don’t have a copy you might consider getting one to help you along the way. and to refer back to when you are in need of info. Thanks again for the message and best wishes to you. Enjoy that healthier lifestyle and the rewards you reap from it 🙂

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