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The source of this article is Pilot Online: http://tinyurl.com/9f63q Former Navy nurse takes advocacy for patients to the FDA By JANETTE RODRIGUES, The Virginian-Pilot © January 28, 2006 Last updated: 12:13 AM CHESAPEAKE — Katherine Decker had one goal when she was a girl growing up dirt poor on a Georgia farm: Make her parents proud by getting good-enough grades to go to college and become a doctor. The summer after her freshman year in college, she worked as a nurse’s assistant, seeing first hand who the real caregivers are in medicine. “Doctors are only there for five or 10 minutes,” she said, sitting in the sun room of her Western Branch home. “And if you don’t have a good nurse telling the doctor what is going on with that patient, the patient will suffer.” Decker cared for patients as a registered nurse, nursing school professor and longtime director of the nursing program at Portsmouth City Public Schools. Now she’s caring for them as a Parkinson’s disease patient advocate for a new Food and Drug Administration program. She’s one of only three people nationally selected for the role. Decker comes to her new job with a rare perspective. In 1993, she was diagnosed with Parkinson’s. The FDA believes the program, mirrored after ones for cancer patients, will help bring better and safer Parkinson’s drugs to market. Parkinson’s has no cure. It is a chronic, progressive neurological disease that affects 500,000 people in America. It causes tremors, loss of motion and facial expression, impaired balance and coordination and sometimes dementia. “I have a mind that is active, but a body that is slow to react,” said Decker, who uses a rolling walker. “Parkinson’s has been a part of my life for so long. It really changes things., and frustrations occur.” When a pharmaceutical company applies for FDA approval of a drug, Decker will be among those who ensure that patients in clinical trials have a chance to weigh in while the medication is in development. This wasn’t always the case, she said. She and two other Parkinson’s patients, a former business magazine editor and a clinical psychologist, were chosen by the federal agency last year. The patient consultants, all volunteers, will advise the FDA and drug companies on how to improve things like clinical trials . The federal agency provides the patient consultants with rigorous training that includes frequent teleconferences and a lot of reading. Decker, a former Navy nurse, taught practical nursing to Portsmouth for 35 years. She loved it, seeing students go through the program and mature into licensed practical and registered nurses . Toward the end of her career, after she was diagnosed, she kept her condition to herself. When she went to Norfolk Sentara General to have a brain stimulator installed a few years ago, she ran into one of her students. The student had no idea she had Parkinson’s. But the disease has progressed . Her husband of 39 years, Richard, has assumed the role that was once her’s – caregiver. “Personally, I never really thought he would be able to do what he does,” she said, smiling. “He’s wonderful.” Parkinson’s doesn’t run in Decker’s family. She didn’t know what was happening to her when she noticed an odd swelling on the right side of her body, from head to foot, while she was attending a state health occupations conference in 1993. She does have her suspicions. In March 1993, she began the first of three hepatitis B vaccinations. In few months later, she experienced tremors on her right side and difficulty writing. Two weeks later, she was in a neurologist’s office. “At the time, we didn’t make the connection with the vaccinations,” Decker said. “But if you look at the fine print on the hepatitis B vaccination, it says “neurological symptoms.” She believes a patient consultant could have questioned the drug company and FDA about the little know side effect to the popular vaccination. Reach Janette Rodrigues at (757) 222-5208 or [log in to unmask] ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn