Ashkenazim focus of Parkinson's study
A clinical study of Ashkenazi (Eastern European) Jews throughout South Florida to find persons with the gene for Parkinson's disease will begin soon in Boca Raton, the Michael J. Fox Foundation for Parkinson's Research announced last week.
Dr. Stuart Isaacson, medical director of the Parkinson's Disease and Movement Disorder Center of Boca Raton and Boca Raton Regional Hospital will conduct the study.
South Florida was chosen because it has the third largest population of Ashkenazi Jews after Israel and the New York tri-state area (New York, New Jersey and Connecticut), Isaacson told an audience of more than 70 people Thursday at the hospital's Dawson Theater.
Most were with a spouse who has Parkinson's and they came to learn about the study, other research and medications to treat Parkinson's disease.
Isaacson said that only five to 10 percent of Ashkenazi Jews have the gene, commonly known as the LRRK2 gene. But those persons have a higher likelihood of developing Parkinson's than persons in the general population.
"The first step is to find out who has this gene," the neurologist, said. "Then we find out what to do about it."
Persons of Ashkenazi descent from throughout South Florida who are above the age of 60 and do not have Parkinson's disease are eligible to participate in the study, Isaacson said.
Semi-annual testing at Boca Raton Regional Hospital will include taking blood and urine samples, a small amount of spinal fluid and brain scans, Isaacson said, adding that testing is confidential, with each participant receiving a number.
Genetic counseling from the Fox Foundation and gene testing at Massachusetts General Hospital are included at no cost, he said.
Isaacson and the Michael J. Fox Foundation hope to find 400 people to take part in the study. They expect to find 50 persons who have the Parkinson's gene. Those persons will be followed for five years.
"This is just observing changes that may occur over time in people who have this gene," Isaacson said. "In fact, most people with the gene, when followed over time, won't develop Parkinson's."
Neuro-genetic diseases occur later in life and Parkinson's is the second most common neuro-degenerative disease in an aging population after Alzheimer's, Isaacson said.
Doctors think that Parkinson's disease begins 10 or 20 years before it is diagnosed, with "symptoms that are very vague and common," he said. Symptoms like constipation, changes in smell, vivid dreams, changes in mood, depression and anxiety.
A diagnosis of Parkinson's usually is made only when symptoms like a shaking hand, slowness in mobility, handwriting becoming smaller, speaking in a lower voice, or loss of facial expression are seen, Isaacson said.
"If we could somehow diagnose Parkinson's even before the clinical symptoms come out, we'll be able to find treatments to prevent the disease from progressing," he said. "What if we tried to find people before they got Parkinson's so that we try to figure out better clues to prevent it from occurring?"
Isaacson said the children of persons with the Parkinson's gene have a 50 percent chance of having the gene, and it can be passed on to their children. "While on one hand we may not want to know if we have this gene, on the other hand, you might want to know to try to make sure that we get a big direction in research to find cures for the future generations that may be at risk of developing it."
Isaacson asked the audience to tell people at their condo or synagogue about the study.
"I'm very concerned about our children and grandchildren," said Gayle Mayerson of Boca Raton, whose 83-year-old husband has had Parkinson's disease for 20 years. She said she volunteered for the tests.
Gerry Feinglass, 79, of Highland Beach was diagnosed with Parkinson's disease two years ago and her brother had Parkinson's. "I think I want my kids and my grandchildren to be better prepared than I was," she said.
Email email@example.com or call 561-392-1818, ext. 6 for information or to participate in the study.