Dystonia Devastation

Last updated on May 13th, 2019 at 02:35 pm

In 1980, Howard Thiel’s shoulders hurt after he played handball. His muscles ached, and by nightfall, his entire body was trembling. At first, Thiel thought he had simply played too hard. However, the problem persisted, so he visited his doctor. The doctor told him to go to a psychologist. The psychologist told Thiel that his pain was induced by a stressful life. The remedy, the psychologist told him, was to pick himself up by his bootstraps.
At that time, Thiel owned Thiel Insurance Services Inc. in Elm Grove, an insurance company that his father had started during the Depression. Thiel’s life had as much stress as that of any business owner, but Thiel instinctively knew his muscle pain was from more than stress.
But what was it?
Then one day, Thiel was driving his car when his head suddenly snapped to the left. He felt a fierce pulling sensation on his neck muscles. He could not move his head to keep his eyes on the road unless he pushed his cheek with his hand until his head faced forward.
Thiel freaked out.
He went back to the doctor. He went to a chiropractor. He went to a psychologist. Each of them said the problem was psychological.
"I used to be a normal human being with a low six-figure income," Thiel said.
He was in pain. His neck continued to pull to the left, and his tremors continued.
Seven years, 41 doctors and five psychologists later, Thiel was finally diagnosed with spasmodic torticollis or cervical dystonia. Dystonia by definition means abnormal muscle tone. There are about seven different forms of dystonia.
Some people have dystonia of the larynx, so they cannot speak. Some experience eye spasms. Some experience tongue thrashing. Others have dystonia of the entire body and are confined to a wheel chair.
Dystonia victims see an average of six doctors and live in pain and confusion for an average of seven years before they are properly diagnosed, Thiel said.
Before Thiel was diagnosed, doctors prescribed pills that were supposed to relax his muscles and mask the pain. Pills did not work because nerve endings and abnormal muscle tone were causing the pulling, the pain and the tremors.
The pain would start in his shoulders, shoot up his neck, along his head to his eyebrows and across to either temple, he said.
"It was a shot of pain that would take my breath away," Thiel said.
During the seven years before diagnosis, Thiel fell into a deep depression for many reasons, including the lack of help from physicians and the insistence of a mental imbalance from psychologists.
His car ride to his office normally took about 15 minutes. But after the onset of the disease, Thiel could no longer make the drive in that time because he would constantly pull the car to the side of the road, lay his head on the steering wheel and cry.
He sold his business at the end
of 1980.
"I could not eat," Thiel said. "I could not brush my teeth or comb my hair. Walking was terrible, taking a shower was impossible. Living was not fun."
Depressed, anxious and desperate to rid the pain, Thiel quickly became dependent on alcohol and prescription medication.
"I was drinking a minimum of half a case of beer per day and at 3 p.m. when the pain would crescendo, I would hit the bottle," Thiel said. "By 8 p.m. I was not talking much sense."
Alcohol was the only thing he took that would actually numb his pain, Thiel said. But when he tried to pass out after a day of drinking, Thiel would tremor so badly that his bed would rattle, he said.
"I was up until 2 or 4 a.m., just pacing around until I passed out from pure exhaustion, but then I would be up again at 6 a.m.," Thiel said.
He tried to commit suicide twice before checking himself in to Elmbrook Memorial Hospital’s rehabilitation program in Brookfield.
Thiel was finally diagnosed with dystonia in 1987. When he was diagnosed, the doctor handed him a booklet.
"On page 59, there was a seven-sentence paragraph on dystonia, and that was it," Thiel said.
Soon after, Thiel found out about Botox. In the late 1980s, doctors were just beginning trials using Botox to treat cervical dystonia. Botox produces a protein that blocks the release of acetylcholine and relaxes muscles. In recent years, some people have used Botox cosmetically to make themselves look younger by reducing the contraction of the muscles that form frown lines on their face over time.
Thiel went to Vancouver, where he received one Botox injection, and the pain, pressure and pulling went away for the first time in eight years.
Today, 74-year-old Thiel lives in Oconomowoc and serves as the executive director of Dystonia Inc., a nonprofit organization for individuals with spasmodic torticollis. He and a group of about 15 people got together in 1987 to start the business, but Thiel has since taken the reins.
The national organization communicates with the majority of its members via the Internet at www.spasmodictorticollis.org, where Thiel provides education about the condition, information about treatments, products to help ease the pain and success stories.
Other treatments aside from Botox for spasmodic torticollis include deep brain stimulation and denervation surgery.
The organization has more than 2,000 members, most of whom have been diagnosed with spasmodic torticollis. The organization is based out of Thiel’s home.
To this day, the cause of dystonia is not known, but it is more prominent in women, Thiel said. It is believed by some that the condition can be triggered by an accident or trauma.
The mission of Dystonia Inc. is to raise awareness to those that may be living with the condition and to the masses so that people can be diagnosed more quickly and receive treatment to alleviate their symptoms.
Nearly 1 million Americans suffer from some form of dystonia, and a recent prevalence study by Baylor College of Medicine, Pacific Parkinson’s Research Centre in Vancouver and Allegan Inc. in California found that the number of people afflicted with the condition could be higher than the number of Americans with Parkinson’s Disease.
Thiel still lives with the condition, but says he is relatively pain free, except for a slight discomfort every three months, when it is time to receive another treatment of Botox. He can’t play golf much and can no longer cross country ski or play handball.
"Humor and being positive are two keys," Thiel said. "I try to make people laugh, and I try to be positive."
He has taken interest in gardening and has a perennial garden in his back yard and on the side of his house.
"Spasmodic torticollis taught me a lot about life, I learned a lot about life that I wouldn’t have learned by selling insurance," Thiel said. "Life is now exciting to me, most importantly because I am helping people in a certain way. I have traveled around the country, appeared on television, I have done things that I never would have done had I not had this disease."
When he looks back at his journey, Thiel recalls the Peggy Lee song that was a hit in 1969, titled, "Is That All There Is?"
"I used to wonder if this is all there is," Thiel said. "I was making money. I put my kids through college, but there was always something missing. Torticollis was the missing link."

Small Business Times, December 16, 2005, Milwaukee, WI

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