Tom Stampe of North Bergen received a flood of e-mails and phone calls after the story of his formerly mysterious illness aired last month on the Discovery Health Channel’s show “Mystery Diagnosis.”
He’s been asked to give a handful of motivational speeches and just returned from California, where he personally addressed a pharmaceutical company’s employees about his saga.
“People have written to me or called to tell me that they just happened to watch the show and got inspired by it,” said Stampe, who suffered with a mysterious nerve disease known as dystonia for over a decade, before New York doctors found a way to treat it.
“There are a lot of people who have this disease and don’t know about it,” he said. “They don’t realize what it is. I got letters and e-mails from Wisconsin, Florida, California. I’m now finally able to tell my story and share it with others, hopefully spreading awareness and raising consciousness. I was able to relive my life a little and I thought that was pretty cool.”
Stampe’s saga began in 1982, when he noticed peculiar things happening to him.
“It started with bad headaches and twitching,” Stampe said. “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. 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.
Nun knew it “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.
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.
Doctors said at the time that there was no cure.
“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.”
Stampe vowed that he would do anything to help the Dystonia Foundation, so when he was approached to tell his story to the Discovery Health Channel, he was more than willing.
“They shot about 40 hours of video with me and my family,” Stampe said. “They brought my mother and sister into New York to be interviewed. It was a long process. But I didn’t mind telling my story. I was so happy that the Discovery Channel was willing to do the show. I figured that if just one person watched and got help, it would be worth it. I never realized it would turn out like this.”
Helped Weehawken woman Stampe’s efforts toward dystonia awareness have already touched close to home. A woman in Weehawken contacted Stampe and told him about her mother who was obviously suffering from the same disease.
“She took her mother to my doctor,” Stampe said. “It’s really remarkable how things work out.”
Stampe said that he traveled to Irvine, Calif. with his wife, Rita, a North Bergen kindergarten teacher, recently to address employees at Allegran, the firm that makes Botox.
“They were all thanking me for telling my story,” Stampe said. “It’s really been a great experience. More people are becoming aware of it and that’s all that matters.”
The show has aired six times on the Discovery Health Channel in the last month and will air in reruns in the near future.
“The only regret I have is that it hasn’t been seen by more people,” Stampe said. “Not every cable company has the Discovery Channel. My family lives on Long Island, and they couldn’t see it until I sent them a tape. But they did a great job. They hit the nail on the head. It was very moving for me to see those old tapes of me and how bad I was. I made a promise when I got sick that if I ever beat it, I was going to do whatever I could to help others.”
Stampe, who is an industrial inspector for the Passaic Valley Sewage Authority full-time, also serves as a township committeeman and coaches boys’ basketball in the township’s recreation department. He is also the president of the New York Chapter of the Dystonia Foundation.
“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. I’m helping to change lives. It’s really been a miracle.”