When Tom Stampe’s head started to tip dramatically to one side in 1982, he didn’t think much of it.
“It started with bad headaches and twitching,” said Stampe, a native of Long Island who has lived in North Bergen for many years. “Then, my head was pulled to the right and locked up. My head was completely stuck to my right shoulder. I thought it was a stiff neck, maybe caused by sitting in front of air conditioning. Maybe it was a pulled muscle. I had no idea.”
But Stampe’s head and neck never straightened.
“I went to different doctors and they couldn’t tell me how it got that way,” Stampe said. “I was completely puzzled.”
Stampe’s confusing problem continued for three full years with no resolution.
“The pain was intense,” Stampe said. “I tried to drive, but I had to turn my hips sideways in the seat and drive sideways. But I soon got progressively worse. Then, I lost my license. I figured this was my life. This was the way I was going to have to live the rest of my life. I lost my job with an electronics company because I couldn’t get there. My father owned an upholstery company, so I worked with him because he drove me every day.”
Added Stampe, “The funny thing was that I never wanted to be considered handicapped. I didn’t like the word. I never wanted special treatment. But I did get depressed. I just went on with my life. For a couple of years, I lived a simple, weird kind of life. I had people tell me that it was psychological, because no doctors could give me a medical reason for it.”
Then, divine intervention occurred.
“My mother met a nun who said that she had similar symptoms and that a doctor at Columbia Presbyterian diagnosed it as a disease called dystonia,” Stampe said.
Often undiagnosed Dystonia is a neurological movement disorder that causes muscles in the body to pull or spasm. According to the Dystonia Medical Research Foundation, there are several different forms of the disease, which is an off-shoot of Parkinson’s disease.
There is blepharospasm, which causes involuntary muscle contractions in the eyelids; oromandinbular dystonia, where jaw muscles, lips and the tongue are affected, causing the jaw to be held open or clamped shut; spasmodic dysphonia, which affects muscles that control the vocal cords, causing speech to waver or to be held to a breathless whisper; writer’s cramp, a focal hand disorder that forces the hand to lock up, even when doing something as simple as writing, and cervical dystonia (spasmodic torticollis), which affects muscles in the head, neck and spine, causing the head to assume unnatural postures, including pulling to one side or turning uncontrollably.
The latter is the form that plagued Stampe.
However, there was one major obstacle. At the time, doctors said that there was no cure, even though dystonia is the third most common movement disorder in North America, following Parkinson’s and tremor. It affects an estimated 300,000 people, although many cases go totally undiagnosed.
“But at least I knew what it was,” Stampe said. “I had tried every test in the world and no one could tell me what was wrong. I had about 20 different medications and nothing worked. So I was willing to try anything.”
Doctors at Columbia Presbyterian decided to try to start Stampe with simple injections, using a newly discovered drug at the time that is now a major part of cosmetic beautification throughout the world – Botox.
“I was one of the first persons to ever get Botox,” Stampe said. “They injected it into my neck. It relaxed the muscles in my neck. The doctors were also going to try a brain surgery, but they started to see a little bit of improvement. But soon after I started taking the shots, my head and neck started moving. It was the most amazing feeling in the world. I took the shots regularly for three years, until I weaned myself off of it. I went three months without a shot, then four, then five, until it was eventually out of my system. I went through a lot of physical therapy after stopping the shots.”
So the miracle drug that Hollywood starlets and TV stars take regularly into their faces to preserve their youthful appearance was also the miracle marvel that helped give Tom Stampe his life back.
“After a while, I was fine again,” Stampe said. “I didn’t need the shots. But I made a commitment that I would forever do whatever I can to help this foundation that helped me get my life back.”
Paid it back So since that time, Stampe has been organizing fundraisers for the Dystonia Foundation, like bowl-a-thons, luncheons and cruises. Over the years, Stampe has helped to raise more than $500,000 for the Dystonia Foundation.
After Stampe recovered, he also found a new life in his wife, Rita, a North Bergen native and a kindergarten teacher at the Kennedy School.
“I was amazed by his spirit, his drive and his strength,” said Rita Stampe, who never knew Tom when he was inflicted. “He’s always been helping others, and I thought that was an admirable quality. When I finally met him and he told me about his past, I couldn’t believe it, because he doesn’t show any signs of it.”
Rita and Tom Stampe have three daughters, Gabby (13), Sabrina (8), and Kellianne (5).
Every year, the Dystonia Foundation designates June as the Dystonia Awareness Month. Gaby Stampe, who is a member of the student council at Horace Mann School, where she will enter eighth grade in the fall, wanted to do something to help raise awareness to dystonia and help raise money.
“She’s a really talented girl,” Tom Stampe said. “She sings, acts, dances. When we have the fundraisers on the cruises, she sings for the people on the cruise. So she came to me and told me that she wanted to raise money.”
Bracelets are popular Gaby Stampe wanted to sell bracelets in her school to help raise money. After all, the colorful rubber bracelets have become very popular, especially since the Lance Armstrong Foundation started selling the yellow “Livestrong” bracelets two years ago to raise money for cancer.
“I’ve been working with the Dystonia Foundation for a long time,” Gaby Stampe said. “And it bothers me that no one knows about it. When I mention what I do, people say, ‘What’s that?’ The Dystonia Foundation’s bracelets have cards attached to them, so that people [can] become more informed about what dystonia is all about. If the kids buy the bracelets, they can read the cards and become educated.”
Gaby Stampe approached Karen Riser, her student council advisor at Horace Mann, and told her of her idea. Riser applauded the efforts and supported the deal.
At the same time, Rita Stampe asked Lori Dmytrow, the student council advisor at Kennedy School where Stampe works, to see if that school would be willing to chip in. They also agreed.
“It was really wonderful,” Rita Stampe said. “They all said they would do whatever they could to help.”
Tom Stampe went to both schools to tell his story. He brought DVDs of his saga to show the children.
“I showed them a video of me before and after,” Tom Stampe said.
$1,500 raised Of course, Gaby organized the sale of the blue bracelets, which feature the logo “Freedom to Move,” on the outside, and the foundation’s website, www.dystoniafoundation.org, on the inside. Between the two schools, they sold more than 700 bracelets and raised $1,500 for the Dystonia Foundation.
“I was so thrilled my daughter came up with the idea,” Tom Stampe said. “It made me proud. She’s such a good student, but when she came out and said that she wanted to do this, I was stunned. This was her baby. I don’t get any credit for this.”
“I just wanted people to understand a little bit of what my dad went through,” Gaby Stampe. “People became interested and I was amazed we were able to raise that much money. It felt good that we were able to help.”
Normal life Tom Stampe lives a normal active life these days. He’s 42 years old and is an industrial inspector for the Passaic Valley Sewage Authority. He also coaches boys’ basketball in the North Bergen Recreation Department and serves as a township committeeman, which he has done for the last 14 years.
But none of that would have been possible for Stampe if not learning about dystonia from a nun’s conversation with his mother.
“I’m so grateful to the foundation for all they’ve done for me and for others,” Stampe said. “There’s now a 95 percent success rate in treating dystonia. It’s unbelievable. I’ve seen people who went from being in a wheelchair to walking. It’s rewarding to me.”
Stampe also serves as the president of the New York Chapter of the Dystonia Foundation.
Story on TV His story will be featured later this year in a documentary by the Discovery Channel for a series called “Mystery Diagnosis.” The producers of the series spent most of the last two weeks filming and interviewing Stampe, his family and his doctors.
“It’s very rewarding to me to see so many people getting help,” Stampe said. “I basically have a low dose of medication and nothing else now. It’s amazing to me. I try not to think about the way I was. But I know I will never stop helping the foundation. More people have to be made aware of dystonia, because a lot of the cases go undiagnosed. With research and support, more can be done.”
To learn more about dystonia and its symptoms, log on to www.dystoniafoundation.org.