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Man writes book about Parkinson’s journey

Roger Fredenburg was 28 when he noticed the tremor in the fingers of his right hand.

He dismissed it, figuring it was an inherited “tick” from his grandmother. As a hairdresser in an Omaha salon, he’d attribute the tremor to low blood sugar when clients noticed it — and promise to eat something after their appointment.

“I told that lie so, so many times that eventually I believed it to be true,” he said.

He went to doctors who attributed the tremor to stress and prescribed medicine for high blood pressure. His condition only worsened. The man who once walked tall and with a long stride was hunched over and shuffling.

Eventually, a neurologist discovered the source of Fredenburg’s symptoms: Young-Onset Parkinson’s Disease. And after years of dealing with the disease, the Fremont man had Deep Brain Stimulation surgery — something he said gave him back his life.

Now, Fredenburg has written a book about his journey called “Always Shaken Never Stirred: Re-Wiring My Parkinson’s Brain.” The book, available on Amazon and as an e-book, covers his years of trying to find the source of his symptoms, the DBS surgery, and a chapter on suggestions for Parkinson’s patients and their caregivers. The book has received positive Internet reviews and Fredenburg, who’s given talks, looks forward to more speaking engagements.

Born in Fremont, where he grew up, Fredenburg was a member of the junior high marching band. He played cello in elementary, junior and senior high orchestra. At 15, he played with Mannheim Steamroller. He sang in the senior high choir and had the lead in the musical “Where’s Charley?” After graduation, he moved to Omaha and taught at Fred Astaire’s dance studio.

“I’m not the typical face of Parkinson’s,” Fredenburg said, noting the three years he spent with numerous doctor and specialist visits.

“You’re too young to be sick,” one doctor would say.

Another later labeled him as a hypochondriac.

But Fredenburg knew something was wrong.

In his book, Fredenburg recalls how the tremor that began in his right hand worsened as each month passed. A doctor ran tests to rule out diabetes and thyroid problems and gave him medication to lower his blood pressure.

In May 1998, Fredenburg went to a graduation party in California. The next day, he and friends were watching the video, when he noticed an old man, hunched over, who looked like he needed a walker.

When the man in the video turned around, Fredenburg was stunned.

That man was him.

“I felt like I was in the Twilight Zone,” he wrote in the book. “…I went into the bathroom. I starred at a reflection of a man I didn’t recognize in the mirror.”

More doctors and tests followed as his symptoms worsened. He drooled at night. He couldn’t write his signature. He couldn’t sit up, roll over or get out of bed without help. Food didn’t smell or taste good.

Eventually, he was able to see a neurologist, who after conducting tests, prescribed a medicine for Parkinson’s disease in 2000. By the time Fredenburg returned to see the neurologist 11 days later, the symptoms were gone.

The neurologist diagnosed Fredenburg with Young-Onset Parkinson’s Disease. The National Parkinson Foundation indicates that the disease itself isn’t fatal, but complications are serious.

“My first concern was, ‘How was I going to tell my parents (Ernie and Dorothy)?’” he remembered.

Fredenburg did his own extensive research on Parkinson’s and didn’t tell clients or staff at the salon for about a year.

He managed the disease with medication for years. But in 2008, the disease had progressed to the point that he could no longer work for more than three hours.

From 2008 to 2010, the disease progressed rapidly, he said.

Fredenburg had his own salon, which he sold. He also sold his Omaha home and moved in with his parents in Fremont.

By 2010, he couldn’t go out in a public without a wheelchair. At the end of that year, he attended a symposium and learned about Deep Brain Stimulation.

With this procedure, electrodes are implanted in the brain. WebMD data states that the electrodes are connected to a device implanted under the skin of the chest. The device sends pulses to the brain, blocking impulses that cause tremors.

After a year’s worth of testing, Fredenburg was approved for the procedure by the end of January 2012. He didn’t fear the surgery.

“By then, I was so tired of the progression of the disease that I wasn’t scared at all,” he said.

Fredenburg was awake for the surgery on March 1, 2012, during which the electrodes were implanted. On March 7, the device was put his chest.

Since the surgery, he hasn’t had to use a wheelchair or his cane and his living on his own.

“It gave me my whole life back,” he said.

In 2013, he began writing the book. He did the layout, format and cover. Douglas Rasmussen painted the artwork for the cover. Fredenburg’s sister, Roberta Rivas of Fremont, helped with proofing the book. Fredenburg self-published the book in August 2015. He did a book signing at the shop he used to own.

“A lot of my former clients came and bought the book, which was nice,” he said.

He also gave a speech at a Parkinson’s DBS support group in Omaha and talked to intensive care unit nurses about the patient’s perspective of the disease.

Now 48, Fredenburg said he’d like to write another book and give inspirational, self-help talks to groups.

“I think it would be fun to do,” he said.

Fredenburg has a Facebook page:

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