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Staying on the job with Parkinson's disease

By H.J. CUMMINS
Minneapolis Star Tribune
May 15, 2007 6:00 AM
http://www.southcoasttoday.com/apps/...CIAL/705150313

Comedy is a popular pre-emptive strike among working people with Parkinson's disease.

"If you see me shaking, it's not just that I'm excited to see you," Edina, Minn., insurance agent Jack Hungelmann often tells his clients before they have a chance to get uncomfortable.

And Bob Waite, a writing instructor at the University of St. Thomas, makes light of his heavy reality every first day of class.

"It's not that I'm drunk or on drugs," Waite, 62, tells his students. "It's that I have a disease. But don't worry, it's not contagious."

In its recent 15 minutes of fame, Parkinson's disease came to be linked to celebrity Michael J. Fox and offered as an argument in favor of stem-cell research.

The disease affects about 1.5 million Americans and 4.1 million people worldwide — numbers expected to double over the next 25 years, partly because the baby boomer bulge is reaching the age the disease most commonly strikes, according to the Parkinson's Disease Foundation.

For now, many are making every effort to work as long as they can with the chronic, progressive disease.

They find it brings out the best and the worst in people they work with — for example, in dealing with the signature body tremors. People with the disease also share a concern that at a time of work speed-ups, their slowness makes them particularly vulnerable to layoffs.

A few of them agreed to share their experiences.

Dena Marie Modica, 48, had to sell her bridal shop in Minneapolis after diagnosis of Parkinson's disease in 2003. The workload and the pressures of owning a small business became too much. Early this year she answered an ad for a membership director at the University Club in St. Paul.

Modica took a chance and told the managers about her condition. Instead of being put off, they actually created a different job for her — designing a catering showroom in the club. Recently, when her duties began to outstrip her energy, the managers once again came through, this time with a part-time schedule.

"I just thought that was all very nice," Modica said.

That Parkinson's fatigue also forced the Rev. Randy Smith to scale back his schedule from 60 hours to 40 hours a week since his diagnosis 2½ years ago. And the 42-year-old needs two naps a day.

Smith, at Trinity Lutheran Church in Crookston, Minn., has handed some night meetings over to church members. He counts heavily on his wife, Marsha, who's associate pastor. And he has found the congregation and the community supportive.

Parkinson's also shrinks a person's voice, a keen loss to a man who makes his living talking. Smith strains to deliver three sermons on a Sunday morning, even with the addition of a microphone.

"I'm having to rethink; how am I going to do my job where energy cannot be my primary strength any more?" he said.

Not every workplace is understanding, however, said Dr. Paul Tuite, director of the Parkinson's Disease and Movement Disorders Clinic at the University of Minnesota Medical School.

Afraid to offer the whole truth, some of his patients tell people at work that they have a "nerve injury," Tuite said.

One patient, whose condition is known at work, is being sabotaged by a subordinate who wants his job, Tuite said. Suddenly the boss' questions — "Are you sure you have enough accommodations?" and "Are you sure you can do this job?" — sound more like doubt than support, he told Tuite.
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Jackie Christensen, 43, left her job as a program director at the nonprofit Institute for Agriculture and Trade Policy in Minneapolis in 2004 on her doctor's advice and after the involuntary writhing movements of her body began to interfere with her work.

"I was moving all the time," Christensen said. "I couldn't keep the phone up to my ear and if I put it on speaker, sometimes my arms would flail so much they'd bang against my desk and make too much noise."

What Christensen objects to is Parkinson's patients losing their jobs just because it makes other people uncomfortable to look at them. That's what she believes happened to a teacher and a restaurant manager she knows.

Minneapolis employment attorney Marshall Tanick said her point has legal precedent.

"That 'uncomfortable' argument was made in days past about not wanting to hire people of a certain skin color or gender because, 'How will our customers react?' " Tanick said. "Those were stereotypes, and this is just a different version of a same poisonous perception."