By Steven Ross Johnson, Special to the Tribune
January 18, 2012
It has been a year since Delores Slezak noticed something unusual with her body.
"I woke up one morning with my teeth chattering like I was cold," said Slezak, 66, a nurse at a middle school who lives in Champaign. "All the while, I was nice, warm and comfortable."
A similar experience occurred one Sunday morning in church, she said.
"I noticed when I was holding a book in church that my hand would start shaking a little bit," Slezak said.
Slezak visited her doctor soon afterward. "The doctor checked me over and said it looked like I had early Parkinson's," Slezak said.
Using her nursing background, Slezak was able to get an early diagnosis of the onset of Parkinson's disease. But there are many other people with the degenerative neurological disorder, which affects the part of the brain responsible for motor skills, who don't know it yet because it is not easy to spot, doctors said.
Now, a group of researchers at Northwestern Memorial Hospital and elsewhere are working together to find a way for doctors to detect Parkinson's earlier. The National Institutes of Health has estimated that about 500,000 people in the U.S. are affected by Parkinson's. Each year, 50,000 to 60,000 new cases are diagnosed.
The Parkinson's Progression Markers Initiative study, which is being conducted in the U.S. and Europe, focuses on identifying biological characteristics unique to the disease. The study, funded by a $40 million grant from the Michael J. Fox Foundation for Parkinson's Research, collects an array of samples, including blood, urine and spinal fluid, from recently diagnosed patients such as Slezak to track potential changes that may lead to the discovery of how the disease progresses in the body. Northwestern is the only institution in Illinois participating in the study.
"We don't know what the trigger is for the disease," said Dr. Tanya Simuni, a neurologist with Northwestern.
That's a significant problem, said Simuni, director of Northwestern's Parkinson's Disease and Movement Disorders Center. "One of the greatest challenges in the development of normal therapeutics for the disease is regular, objective markers, either of the clinical diagnosis or markers of progression of the disease," she said.
Similar to the way the development of a blood test led to earlier detection for such conditions as diabetes and high cholesterol, Simuni said a test that could identify Parkinson's early on is needed, with the hope that it could lead to more effective treatment.
"It would help us as researchers to develop faster, effective therapies," Simuni said. "A predictive measure would potentially facilitate a process of developing effective drugs or weeding out the drugs that will not have promise."
One complication in diagnosing Parkinson's is that its effects vary, said Dr. Todd Sherer, chief executive officer of the Michael J. Fox Foundation.
"Parkinson's disease is a variable disease across individuals. It's not the same for everyone with Parkinson's," Sherer said.
Another challenge in Parkinson's research has been a lack of consensus among scientists over the results found in past studies, a problem he hopes will be resolved with the Progression Markers Initiative study.
"There have been a lot of small studies with small numbers of patients, and unfortunately when those studies have tried to be expanded, it's been very difficult to replicate and validate those findings," Sherer said.
The study plans to recruit as many as 400 people who have Parkinson's and 200 people who are not affected, making it one of the largest studies of its kind. Since it was launched in September 2010, the study has recruited 163 participants.
"I did not have any reservations about doing" the study, said Slezak, who has participated for nearly a year. "I figured if there was anything I could do to help with the information to find a cure or treatment, I am more than willing to be in the study and go through these tests."
For more information about the Parkinson's Progression Markers Initiative study, call 312-503-5645.
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