Tom

Tom Seaman’s story

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 and 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! In 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. 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 dystonia 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.


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Steve

Steven Zarren story

In February 1993, I began blinking excessively and uncontrollably. As it became worse, I went to a number of eye doctors. They all agreed that my vision was not impaired and thought the problem was dry eye and prescribed drops.  They did not help. The others thought the cause was nerves, but it was not that either.

My Focal Eyelid Dystonia Symptoms Intensify

When I coached my sons’ basketball games, I not only would miss half of the games, caused by my eye blinking, I would wear a baseball cap and sunglasses to hide my eyes. When at a restaurant, my sons, sitting opposite me, would turn away to avoid looking at my eyes twitching. They joked about it, not realizing the discomfort and embarrassment I felt. My wife had to do the weekend driving since I could not and even though I would become a passenger, the twitching would continue. It always seemed to intensify when I was in a moving vehicle. It did not matter if I was driving or someone else. My 90 mile daily round trip to work became a nightmare. Thankfully, I was able to avoid having any accidents.

Two Years and Not a Solution

Two years later, I was quite concerned and upset. By this time my quality of life had become worse. Being a corporate controller, I felt my future and family’s financial security were being threatened.

In June, 1995, I found a local doctor who diagnosed my symptoms as a rare neurological disorder called focal eyelid dystonia or blepharospasm. It is the result of “faulty” brain signals
sent to the optic muscles, forcing them to contract, hence the twitching.  With the cause being unknown, there was no hope of relief. It is not life-threatening but is debilitating. In the worst cases, the sufferer would be considered legally blind even though their vision could
be 20-20.

A neurologist told me that the preferred treatment was eyelid injections. After following this treatment method, I noticed my eyes looked different. I then also noticed the side of my face
and smile were being affected. After the second round of eyelid injections, six weeks later, I decided to stop.

A Healthy Option Seemed Hopeful

Several weeks later, I learned of a natural and organic whole food program. It’s a one of a kind whole food that is loaded with nutrition. This whole food has been available for about 30 years and has helped several hundred thousand people with many health issues.  I decided to try it.

When I would back out of my driveway to go to work, the spasms would begin. They
would not stop until the car was parked. Six weeks after starting this organic, whole food program, my wife made me realize that I had not had any spasms all week. I said, “Could it be that the focal eyelid dystonia is caused from a nutritional deficiency?” A seed was planted in my mind, that maybe this organic, whole food program could help many other sufferers.

The Quest to Help Others

I spent the next twelve years trying to convince the medical community that I had discovered something remarkable. No one would listen. During this time, I did introduce the food to sixteen individuals with focal eyelid dystonia and seven told me it helped.

Sometime later Johns Hopkins School of Medicine in Baltimore, Maryland decided to do a double-blind study at the Wilmer Eye Opthomological Institute. Six years later the results of the study, where I was mentioned twice, was published. The research article appeared in The Journal of Ophthalmology, July, 2004 Issue Volume 138; Issue 1 pages 18 – 32.

The results noted that the food was safe, helped some, with no side effects.

I was told, by the doctor who conducted the study, that the food was safe and he expected it to help many more people. Also, that he would recommend it for all who wish to try it for several months.

In the summer of 2005, I received an honor from the Dystonia Medical Research Foundation being recognized with a 2005 Courage Award. It was received, along with several others, for inspiring other dystonia sufferers. Dystonia is the name of movement disorders with focal dystonia being one of many.

Helping Others Improve Their Quality of Life

Since I have been so helped by this unique whole food and nutritional supplement program, and I my symptoms have dramatically diminished, I make it the focus of my life, to help others suffering with dystonia and blepharospasm, improve their quality of life.

You can call me at (410) 486-2525 between 9 AM and 9 PM EST, 7 days a week or send an email to steve@dystoniadisease.net


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