How it all started...

My name is Linda Thompson and I received my dystonia diagnosis in March of 2012. I began to notice something was very wrong at the end of 2011. I had some infrequent “spells” from time to time before that but I attributed them to lack of sleep from overworking. The first noticeable physical symptoms were fatigue, tremors in my neck head and jaw, tongue biting, non epileptic seizures, and blurred vision.

In December of 2011, my boyfriend and I went out of the country for vacation. I was very ill during this trip and I was quarantined to my room. Getting back to the states, I was still weak and tired. I assumed all my symptoms would pass but after a month I seemed to get worse with no indication of recovering.

The children were noticing my symptoms and were very concerned. I set up an appointment with my family dr. In January 2012. Initially he thought I was having a stroke or had already had a stroke. He got a bit frantic and the endless tests began. We could see he was out of his element so we decided the best action to take was a trip to the neurologists at Wake Forest in North Carolina. My mother worked there for many years and lived not too far from it.
The doctors at Wake Forest determined I had Dystonia. And recommended I see a neurologist when I returned home.

My symptoms continued to get worse. The left side of my body was being taken over by the dystonia. I wasn’t able to control the movements. I was biting my tongue 10 to 15 times a day. My head was constantly moving and tilted. My left arm and hand curled into my body. My eyesight was progressively getting worse. My balance was poor. The pain from my muscles continually contracting was constant. I was having dystonic episodes 2-3 times a day. My life was changing dramatically!

My local neurologist began a regiment of Parkinson’s medication which had little effect.

All my life I’d been a strong and fearless. I could take on the world. I ran full service restaurants for 15 years. I moved multiple times to under performing restaurants to retrain managers and employees on standards and put them in the black.

I planned my first skydive with my daughter and very close friends to raise awareness for this condition. follow us and watch our journey grow.

Linda Thompson

My Story


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