The CBS news correspondent Bill Geist, 67 reported some news of his own on a recent Sunday morning talk show. He told viewers that he had been diagnosed with Parkinson’s disease a decade earlier. His wife told their children 4 years ago… and just recently Geist told his producer. When poor handwriting became apparent at book signings, he would attribute it to a broken wrist. For some time viewers had been contacting the station, concerned that he appeared ill. Said Geist…”I just somehow thought I could get away with it. I probably wouldn’t have told anybody ever, if it was strictly up to me.”
Many patients with Parkinson’s feel the same way. Doctors and researchers say it is common for people with Parkinson’s to hide their diagnoses, often for years… and that can cause various problems. Maintaining the secret of Parkinson’s can be quite stressful for the individual, and experts fear it may also be slowing down the research needed to find new treatments. Parkinson’s progresses over several years, as brain cells that produce dopamine, a neurotransmitter slowly waste away. Without dopamine nerves have difficulty sending messages. Muscle movement becomes unstable, and hard to control. Some but not all patients experience memory problems, as well as cognitive difficulties and altered speech. Trials focused at finding a cure or delaying progression need to enroll patients who are newly diagnosed. Because many patients choose not to come forward, trials scramble to enroll enough subjects. Dr. Kenneth Marek, president of the Institute for Neurodegenerative Disorders see things first hand…”The irony is that the group who 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. The most effective way to speed the development of treatments would be to recruit patients with new diagnoses more quickly.”
One practicing attorney in St.Louis who has had Parkinson’s for years just recently felt it necessary to tell friends and colleagues. “I think people are nicer, but that turns out to be o.k.” NewYork Times….. 7-9-12