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Jim Atkinson has serious brown eyes and a patient demeanor that served him well during decades spent as a consumer-services manager at a major local employer.
The 66-year-old speaks evenly and thoughtfully. His manner is measured and reassuring -- except for the frustration that seeps into his voice when he ponders why he has Parkinson's disease, which causes his body to roll and occasionally shake, and parts of his body to stiffen.
Parkinson's, thought to affect more than 1 million people in the United States, is a chronic and progressive neurological disease that occurs when dopamine-containing cells in the brain begin to malfunction and die. Most people know of the disease from Michael J. Fox, the actor of "Back to the Future" fame who revealed the disease's trademark tremors during a broadcast of his congressional testimony for stem-cell research funding.
What most people don't know is that the disease can affect anyone. There is no known cause. There is no known cure.
Todd Sherer, chief executive officer for the Michael J. Fox Foundation for Parkinson's Research, describes the disease's prevalence as a "sort of major ticking time-bomb situation," because as the baby boomer population ages, the likelihood of more people being diagnosed dramatically increases. The biggest risk factor for Parkinson's is age: Most people who develop the disease are at least 60 years old, but not all. There are 50,000 to 60,000 new diagnoses in the United States each year, although there is no official registry that tracks the disease. And as we live longer, those numbers are expected to increase.
Generally, the first sign of Parkinson's is tremors, but not always. The tremors typically begin as an involuntarily movement of a finger or arm. For Atkinson, one finger began moving, unexpectedly curling while he was sitting at a desk.
The disease usually progresses slowly, affecting a finger or limb and then stiffening one side of the body. Eventually, sufferers experience increasing limitations to their movement and losses of balance, speech and even memory.
Atkinson, who at 6 feet 5 inches was an athlete in his youth, spent 30 years exercising before going to work each morning. When talking about his long-term healthy lifestyle and the possible cause of his disease, Atkinson quickly recalls getting hit hard on the side of his face while playing baseball in high school.
Perhaps a dormant head injury caused his disease, he wonders. In 2003, Mayo Clinic researchers found that those who suffered head injury were four times more likely to develop Parkinson's later in life.
Or maybe Atkinson's culprit was the fertilizer he was exposed to while growing up on his family's Olmsted Falls farm. In 2009, researchers at Rhode Island Hospital linked higher levels of nitrates in food and fertilizer with increased deaths from diseases, including Alzheimer's and Parkinson's.
There is also the possibility that an unknown genetic link could be the underlying factor, although Atkinson doesn't have any family members with Parkinson's. Doctors agree that people who have a close relative with the disease are more likely to develop it, though the risk factors vary depending on the form of genetic mutation.
Until the 1990s, experts thought that Parkinson's had no genetic link. Since then, 11 genes have been found to correlate with an increased incident. Five of those 11 genes were announced in February.
Now, many experts agree that Parkinson's is caused by a combination of genetic and environmental factors. Still, it's a guessing game.
Cleveland researchers looking for clues
"Many people believe we will eventually land in a place where there will be a lot of people who have a genetic vulnerability that was triggered by an environmental factor," explains Amy Comstock Rick, chief executive for the Parkinson's Action Network, the leading lobbying organization for research dollars spent on the disease.
In Cleveland, researchers and doctors are actively trying to understand the disease.
At Case Western Reserve University's School of Medicine, two researchers are digging through the blood samples of about 250 Parkinson's patients in a search for genetic mutations.
"The hope is that someday we will understand what is happening at the molecular level," said Shu Chen, an associate professor in the department of pathology at the school. He and Amy L. Wilson-Delfosse, an associate professor of pharmacology and assistant dean for basic science education, gathered the samples from patients at University Hospitals Movement Disorders Center, where about 300 Parkinson's patients receive treatment for their often-debilitating symptoms.
The trick, Chen and Wilson-Delfosse said, will be finding the cell mutation and then analyzing it to see if those cells respond differently to stress-inducing tests. Eventually, they hope to understand how the cells work so they can slow the progression of the disease.
"If someone gets it at 60 and we buy them 20 years, that may be enough," Chen said.
One of the most common gene mutations is known as LRRK2 (pronounced "lark-two"), which occurs at a higher rate in the Ashkenazi Jewish population. An Ashkenazi Jew who has a relative with Parkinson's is 30 percent more likely to develop the disease, Chen said.
Cuyahoga County's 81,500 Jews, last measured in 2004 and one of the largest such populations in the nation, are at least 90 percent Ashkenazi because most originated from Western and Central Europe, according to Sean Martin, associate curator for Jewish history at the Western Reserve Historical Society.
That local concentration, Chen said, is a "major advantage" for research purposes.
At the Cleveland Clinic, Dr. Hubert Fernandez is recruiting newly diagnosed Parkinson's patients for a study in conjunction with the Fox foundation. The study, which is called the Parkinson's Progression Markers Initiatives, is being conducted at 20 sites around the world.
The global study will observe 400 newly diagnosed Parkinson's patients and 200 unaffected people who are in the control group and collect urine, blood and spinal fluid over a period of years. In the end, researchers hope to have definitive identifiers, called biomarkers, for the disease.
The biomarker could be a substance or characteristic in the body that is associated with the presence of the disease. For example, a high blood-sugar level is a biomarker for diabetes. It can be measured and controlled to help the patient cope with that disease.
Diagnosing disease can be difficult
For Parkinson's patients, there is no simple way to measure the progress of the disease. No one indicator, such as blood pressure, can tell them to change their lifestyle.
In fact, just determining whether a person really has Parkinson's is difficult in the early stages as doctors have nothing to measure. Fernandez said he tends to ask new patients how they feel and how fast they can walk, using knowledge from his years of experience to determine if someone has the disease.
"It's a crude, clinical eyeball test," Hernandez said.
In some cases, it can take years to confirm whether a patient has Parkinson's. Cleveland OB-GYN Dr. Karen Jaffe was diagnosed twice before finally believing she had the disease. She said it took two years of symptoms developing before she was convinced. Even then, she hid the disease from all but her closest family members.
Jaffe, 52, said her first symptom was a sharp pain in her shoulder blade. Over two years, Jaffe went to an orthopedic surgeon for what she presumed was tendinitis. But after a second shot of steroids, the pain didn't go away.
In 2007, after the second shot failed, Jaffe feared the treatment had caused problems in her arm, which was jittery and felt "like caffeine was running through it," Jaffe said. She went to a neurologist for a consultation and he reluctantly diagnosed Parkinson's.
"I left never believing him for a minute," Jaffe said. She had no visible tremor, which is usually an early sign of the disease.
A year later, with increasing pain in her shoulder -- it turns out the pain was caused by a stiff lack of movement she hadn't noticed -- she went to another neurologist, who gave the same diagnosis.
Jaffe eventually began to tell people about the disease, which is still progressing slowly. She has become an outspoken advocate and fundraiser.
So far, Jaffe says the disease doesn't affect her work; there are no tremors when she is on medication. She also exercises, a proven treatment, to keep the symptoms at bay.
"My neurologist calls me Parkinson's light," Jaffe jokes. "If you were sitting here right now, you wouldn't know I had Parkinson's."
Atkinson has struggled with his Parkinson's for more than a decade. He uses medication, too, but also had doctors at University Hospitals Case Medical Center implant a deep brain stimulator, or DBS, in his head and chest. The device works like a pacemaker for the brain, sending electrical currents that block the brain signals that cause shaking.
Atkinson said that without the DBS, he would almost certainly be in a wheelchair. With the implant, he still has tremors but can control them and move more freely. He still tires easily and has difficulty walking on his treadmill every day. But there are also signs that life can be close to normal.
Right now, Atkinson is waiting for Cleveland's cloudy spring to pass so he can get out on the golf links. At the same time, he is waiting for researchers to find a cause and a cure.
"It's a mystery to be solved in the future," Atkinson said. "Hopefully, I'll be here."
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