Mary Ellen Quinn assumed the shaking in her right arm and leg was restless leg syndrome. But her doctor referred her to a neurologist, who determined the Chicago Ridge resident was in the early stages of Parkinson's disease and prescribed her medication to control the symptoms.
"Overall, it's helped and the disease is under control," said Quinn, 55. "If I get nervous or tired, I notice it more."
Like many of the nearly 1 million Americans with the disease, Quinn holds out hope that the results of a $40 million, five-year new study could change the way this common movement disorder is diagnosed and treated.
Northwestern University's Parkinson's Disease and Movement Disorders Center has been selected as one of the 18 research sites for the study, the Parkinson's Progression Markers Initiative, sponsored by the Michael J. Fox Foundation.
The study is recruiting 400 people recently diagnosed with Parkinson's who are not currently taking medication as well as 200 control subjects without the disease. At Northwestern, 20 participants will be followed for about two years.
The initiative is the first study of its size to search for a biomarker for Parkinson's. Researchers will track patients using samples of blood, urine and spinal fluid as well as advanced imaging and behavioral assessments. Because it is an observational study, participants will not receive an experimental drug or treatment.
Parkinson's disease is a slowly progressing disorder of the nervous system marked by slowness of movement, tremor at rest, muscle stiffness and gait problems. The symptoms are triggered by declining levels of dopamine in the brain.
"It is overall the disease of aging," said Dr. Tanya Simuni, director of Northwestern's center and principal investigator for the trial. "With our aging population it's expected there will be twice as many people living with Parkinson's over the next 20 to 40 years."
There is no cure for Parkinson's disease and no standard for treatment, as doctors typically treat the most bothersome symptoms. In addition to medication and surgical therapy, treatment approaches include general lifestyle modifications (rest and exercise), physical therapy, support groups, occupational therapy, and speech therapy, according to the National Parkinson's Foundation
There is also no single diagnostic test for Parkinson's disease. The study aims to find a biomarker for Parkinson's in much the same way blood sugar level is a biomarker for diabetes. Doctors use blood sugar level to measure the effectiveness of diabetes treatment.
Finding a biomarker for Parkinson's is essential to improve the accuracy of diagnosis and to monitor progression of disease, said Simuni. "Once a biomarker is established, we anticipate using it for more rapid testing and development of effective new treatment options."
"We need objective measures along with doctor assessments that would provide us with rapid and accurate knowledge of which drugs work and which do not," said Simuni.
"We're honored to be the one and only site in the Midwest to take part in the study and are prepared to have participants from the entire geographic area," said Simuni. "We not only look forward to the scientific results but hope to increase awareness of Parkinson's disease in the community."
Quinn also looks forward to the results, but for now, she does her best to live with the disease. She walks a mile each day and is still able to work as a secretary at a Chicago law firm.
"I try to get to the gym, do Pilates and ride the bike," she said. "I do have my moments but I try to keep as busy and active as possible."