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Published: Monday, 7/31/2006

Local group helps young cope with Parkinson's

BY JC REINDL
BLADE STAFF WRITER
Kelly Maurer, 37, of Perrysburg is part of a support group along with Nancy Temme and Brett Willoughby of Tiffin. Ms. Maurer, Mrs. Temme's husband, and Mr. Willoughby have Parkinson's. Kelly Maurer, 37, of Perrysburg is part of a support group along with Nancy Temme and Brett Willoughby of Tiffin. Ms. Maurer, Mrs. Temme's husband, and Mr. Willoughby have Parkinson's.
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Kelly Maurer was jogging on her health club's track one day six years ago when she was forced to stop because of tightness and numbness in her left foot.

While lifting weights several days later, the Perrysburg resident realized her left shoulder was drooping, and that she could no longer lift as much with that side of her body as she could with her right.

It took Miss Maurer two more years to discover why her body was betraying her, a journey involving numerous visits to different hospitals and neurologists, and one erroneous diagnosis. Finally, she learned the cause of her problems: Parkinson's disease.

In her 30s when her symptoms began, Miss Maurer, 37, was in disbelief. Most victims of Parkinson's are diagnosed in their 60s and the majority are men.

"My jaw hit the floor," recalled Miss Maurer, an automotive assembly worker at DaimlerChrysler in Perrysburg Township, who is now on extended disability. "It has this stigma of an old man shaking, and that's what I thought of Parkinson's."

At the time, actor Michael J. Fox, star of such TV sitcoms as Spin City, was the only person around her age that Miss Maurer had heard of with the disease.

Parkinson's disease destroys brain cells that produce dopamine, a chemical needed for signaling muscle movement. Patients can suffer increasingly severe muscle tremors and "freezing," affecting day-to-day activities such as walking, writing, or driving a car. In later stages, patients may have difficulty making facial expressions.

Parkinson's disease can be fatal if left untreated, as patients ultimately lose their ability to swallow. There is no known cure, although drugs made available just in the past decade can control symptoms and allow patients to live a normal life span, the National Parkinson Foundation reports.

Yet even with the most proven medications, Parkinson's symptoms gradually worsen over time. No one knows what causes the disease. However, in 5 to 10 percent of cases, particularly among the youngest patients, the disease can be inherited, the foundation says.

It was the day after Michael Kramer's 40th birthday in 1989 when he suddenly had trouble gripping his right hand around his car's steering wheel.

Soon he was experiencing other textbook Parkinson's symptoms, such as trouble writing and walking. Yet it took Mr. Kramer visits to three neurologists to receive a correct diagnosis, a difficulty he attributes to his age at the time.

"I heard I was one in 250,000," recalled Mr. Kramer, who is now 57 and lives in Milan, Ohio. "I couldn't win the lottery, but I won that one."

While it is still the exception for someone in their 40s, 30s, or even 20s to be diagnosed with Parkinson's, it is becoming more common, said Susan Reese, director of the American Parkinson Disease Association Young Parkinson's Information and Referral Center.

Of the roughly 1.5 million Americans diagnosed with the condition, about 225,000 - 15 percent - are now diagnosed before age 50, according to the National Parkinson Foundation.

There are believed to be about 25,000 individuals with Parkinson's in Ohio; no statistics are kept for young-onset cases, generally considered by physicians as patients under age 50.

The number of support groups for younger Parkinson's patients also seems to be growing, as these individuals have been using the Internet to network with each other, Ms. Reese said.

In the Toledo area, the Young On-Set/Young Mind-Set Support Group was established last year by two young Parkinson's patients and their spouses. It was organized through the Ohio Parkinson Foundation, Northwest Region, and is one of about 100 Parkinson's groups in the state, yet one of only a handful aimed at younger or active patients.

The Young On-Set group's two dozen regular members range in age from 30 to 75, and attend monthly meetings at the Perrysburg YMCA.

There are about 40,000 new Parkinson's cases each year in the United States. Some experts believe the number of young-onset cases is increasing in part because doctors are no longer as reluctant to diagnose younger individuals.

"Up until about the 1980s and 1990s, the concept of someone developing Parkinson's was so foreign, it was hard for doctors and neurologists to understand that was the matter," said Dr. Lawrence Elmer, a neurologist at the University Medical Center in South Toledo, formerly known as Medical University of Ohio.

At one of its smaller social gatherings this month, a dozen Young On-Set group members formed a circle in Miss Maurer's living room out of sofas and upholstered chairs, and began sharing stories.

With optimism and even humor, they chatted about exercise routines, prescription regimens, family life, and new treatments.

And while passing around a bag of chocolates, they discussed the unique challenges Parkinson's presents to younger and active patients, who can still be raising families and may not be ready to retire. Older members of the group say they attend the meetings because they share the same goal of keeping active.

Robert DuBois, 61, said he blames the shaking in his right hand for keeping him unemployed several years ago. Although Mr. DuBois had three decades of experience in his industry, and was still adept at using the computers needed for his job managing paint plants for auto parts, getting job interviewers to look beyond his Parkinson's tremors in his right hand was difficult.

"I don't know how many interviews I know I nailed, but my right hand gave me away," he said.

Mr. DuBois later explained how he grew more assertive when catching his interviewers staring.

"After awhile I would say, 'You're not hiring my right hand, you're hiring my brain,' " Mr. DuBois said. "They almost fell out of their chairs."

After seven fruitless interviews, Mr. DuBois said he was finally offered a job as a shop foreman at a company where he had worked two decades before.

"It was a pretty good step down from where I'd been, but I needed a job and they needed my experience," he said.

One of the group's goals is to reach out to newly diagnosed Parkinson's patients, some of whom may be scared to tell friends or co-workers about their diagnosis. Several members can recall how their first visit to the group was also their first time meeting someone their age with the disease.

"We're trying to break the stigma that Parkinson's disease is something that old men get," said Nancy Temme, 52, whose husband John was diagnosed five years ago. The couple is among the group's founding members. "It affects young people who are active, and we want to create awareness so people know they're not alone."

The Temmes and co-founders Michael and Linda Kramer met each other at another young-onset group near Columbus. Last spring, they decided to establish a similar chapter for Parkinson's patients in northwest Ohio.

They have since invited several speakers to their meetings, including a dietitian, a yoga instructor, a pharmacist, and a support counselor, as well as Dr. Elmer from University Medical Center, whose expertise has given him a gurulike status in the area's Parkinson's community.

Dr. Elmer called the group one of the best he has seen.

"They are so on fire in terms of dealing with the disease and helping others," he said.

Contact JC Reindl at: jreindl@theblade.com or 419-724-6050.



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