The Burden of Keeping Parkinson’s Disease a Secret
Sunday, 13th April 2014

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.

Robert Caplin for The New York TimesThe TV journalist Bill Geist just revealed that he had been living with the knowledge for a decade.

Bill Geist - Parkinson's

Bill Geist opens up about having Parkinson’s Disease

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.

Karen Jaffe - Parkinson's

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.

To her surprise, Dr. Jaffe found her patients supportive, and she seized the opportunity to plunge into fund-raising. Dr. Jaffe and her husband, Marc Jaffe, started a comedy group called Shaking With Laughter to raise money for Parkinson’s disease research.

Trials aimed at finding a cure or delaying progression of the disease must enrol patients whose disease is newly diagnosed. But with so many patients choosing to keep a low profile, many trials struggle to enrol enough subjects.

Some highly motivated people do discreetly take part in trials even while hiding their Parkinson’s — but many who would prefer to ignore their disease avoid medical settings.

Dr. Kenneth Marek, president of the Institute for Neurodegenerative Disorders and lead investigator for the Parkinson’s Progression Markers Initiative, sees the difficulty firsthand.

His research, paid for by the Michael J. Fox Foundation, tracks the progression of the disease in patients who do not yet take medicine for it. The less damage that has been done to the brain, the easier it is to distinguish the primary mechanisms of the disease from the many cascading effects to come.

A large research center is doing well if it manages to recruit one Parkinson’s disease patient a month for study, Dr. Marek said. Since 2010, the biomarker study has recruited just 239 new patients out of the 400 needed.

“The irony is that the group that is in some ways the most informative, which is people who are just diagnosed and untreated, are also the most difficult to identify and convince to be in a clinical trial,” he said. The most effective way to speed the development of treatments would be to recruit patients with new diagnoses more quickly, Dr. Marek said.

With public figures like Michael J. Fox talking about the disease, there is reason to think that Parkinson’s patients are becoming more open.

Michael J Fox

Mark Kodner, 52, a managing partner at a St. Louis law firm, calls Mr. Fox an “inspiration.” Mr. Kodner, who learned he had Parkinson’s 10 years ago, kept his condition relatively private, telling only his wife and, a few months later, other relatives and a few close friends.

Like Dr. Jaffe, however, Mr. Kodner eventually found the stress of concealment overwhelming. Mr. Kodner, who golfs and attends public functions in connection with his work, found himself avoiding social events and battling anxiety that his muscles would freeze at an inopportune moment.

Six years after his diagnosis, he began widely sharing it with clients and friends. News quickly spread around the St. Louis legal community.

The result? “I think people are nicer,” he said. “But that turns out to be O.K.”

Mr. Seaman, the California consultant, eventually closed his business. He and wife now help care for their two grandchildren, ages 3 and 7. They do not know about his condition. “Someday, I’ll have a sit-down with them,” he said.

Telling your friends and family can be difficult, but you will be amazed at the love and support you receive. Many of our supporters have decided to get involved and help find a cure for Parkinson’s by hosting an event to share their diagnosis.

Getting Involved is a great way to raise funds and awareness and help advance research. Find out how you can make a difference

Read more about Sharing Your Diagnosis

Source: The Michael J Fox Foundation