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Keeping Parkinson’s Disease a Secret

By Kate Yandel, www.well.blogs.nytimes.com

When Nancy Mulhearn learned she had Parkinson’s disease seven years ago, she kept the diagnosis mostly to herself, hiding it from friends, colleagues — even, at first, her mother, sister and teenage children.

After seven months, she decided she had to tell her family, and they settled into an unspoken agreement not to talk about the disease. She also realized her colleagues already suspected the truth: One asked why she had trouble applying her lipstick. She sometimes could not control her shaking hands.

Still, it was years before Ms. Mulhearn, now 51, of Bethlehem Township, N.J., felt she could talk freely about her condition. Ms. Mulhearn, a school secretary, regrets having waited so long.

“I didn’t want anybody to feel sorry for me,” she said. “To have people look at you and start crying — that’s not what anyone wants.”

In that, Ms. Mulhearn is hardly alone. Doctors and researchers say it’s not uncommon for people with Parkinson’s to conceal their diagnoses, often for years. But the secrecy is not just stressful to maintain; experts fear that it also may be slowing down the research needed to find new treatments.

Parkinson’s disease progresses over many years as brain cells that produce dopamine, a neurotransmitter, slowly waste away. Without dopamine, nerves have trouble sending messages; muscle movement becomes erratic and difficult to control. Some patients, though not all, experience memory problems, altered speech, cognitive difficulty, insomnia and depression.

Treatments only alleviate symptoms and don’t slow the progression of the disease. Partly because there are no therapeutic options for those with new diagnoses, many ignore the disease until symptoms become obvious.

How does Parkinson’s disease affect the body? The mind? How does having a progressive disease affect families? Listen to the stories of seven men and women with Parkinson’s disease.

The CBS News correspondent Bill Geist, 67, revealed on a Sunday morning talk show this month that he had been living with the diagnosis for a decade.

His wife finally told their children four years ago, but until then he had shared the news only with her. He took dozens of pills daily in secret, even saying at book signings that his poor handwriting resulted from a broken wrist.

It was only a year ago, Mr. Geist said, that he told his producer about his condition. The producer suspected it; viewers had been writing to the network with their own concerns. “I just somehow thought I could get away with it,” Mr. Geist said in an interview. “I probably wouldn’t have told anybody ever, if it was strictly up to me.”

Many patients feel the same. Some are in denial — Ms. Mulhearn said that only after letting go of her disbelief and fear of burdening others did she come to embrace talking about her disease, raising money for research and actively looking for clinical trials to join.

Many also fear the consequences to their careers.

Twelve years ago, Rick Seaman was a 53-year-old consultant in Palo Alto, Calif., when his Parkinson’s was diagnosed. He began to tell prospective clients after one inquired about his health. Afterward, he said, he began to see a drop in new business. “They don’t need extra reasons to say no,” he said.

Dr. Karen Jaffe, an obstetrician and gynecologist in Cleveland, received a diagnosis five years ago at age 48. At first, she refused to believe it. She got a second diagnosis a year later, but did her best to conceal it. “There’s something about this diagnosis that makes us certain that we will be judged,” she said.

She slipped into the neurologist’s office next door to her own for appointments, hoping her colleagues and patients wouldn’t see her in the hallway. She told her husband, but kept the news from her children. Her 13-year-old learned about it while reading her mother’s journal.

Dr. Jaffe told her children to say nothing, snaring them in what she called an “awful, terrible web” of secrecy.

Concealment became as stressful as the disease itself, Dr. Jaffe said. As she lost weight, worried friends asked if she had cancer. Finally, she decided to begin sharing the truth. Read the rest of the article.

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