A doctor told 63-year-old Howard Porter 20 years ago that the tremor on the right side of his body and the occasional sluggishness of his movements were symptoms of Parkinson’s disease.
“I thought it was pretty disastrous,” recalls Porter. “I thought it was the end of my life, but it was just the opposite.”
Porter began getting treatment at the Parkinson’s Disease Center at Boston Medical Center, where he enrolled in clinical trials of various new drugs. He also started drawing and painting again, a pastime he’d enjoyed in high school. The artistic endeavor turned out to be triply rewarding: it gave him something to do during the night hours, when his twitching muscles kept him awake; it gave him a new way to connect with people; and it calmed him down. Soon, he started an art group in Stoneham, where he lives, and he now runs two Parkinson’s support groups.
Last week, some of Porter’s artwork, a drawing and a photograph, was on display at the first-ever World Parkinson Congress in Washington, D.C., an international gathering of researchers, health-care professionals, counselors, and patients. More than 3,000 people attended, and Michael J. Fox (diagnosed with Parkinson’s in 1991) was the keynote speaker. Porter was there, too, as were three Boston University clinicians, who gave talks on new treatments and patient care being developed at the Parkinson’s Disease Center and throughout Boston University — Benjamin Wolozin, a School of Medicine professor of pharmacology and neurology, Peter Novak, a Boston Medical Center neurologist, and Cathi Thomas, a nurse, a MED clinical assistant professor, and the program director of the Parkinson’s Disease Center.
About 1.5 million Americans, most over 60 years old, have Parkinson’s, a progressive disease marked by the death of nerve cells in the brain that produce dopamine, a chemical messenger of brain signals that control muscle movement. While Parkinson’s isn’t fatal, it can be disabling. Symptoms include limb tremors, impaired mobility, muscle rigidity, and loss of balance. A minority of Parkinson’s cases are genetic, but for the majority the cause is unknown. There is no cure, and most current treatments focus on alleviating the symptoms with dopamine-replacement drugs such as Levodopa.
Many researchers are eager to find new drugs, particularly drugs that actually protect the nerve cells in the brain, so-called neuroprotective treatments that could slow the disease’s progression. Several of the ongoing clinical trials at the Parkinson’s Disease Center are testing such drugs, and Wolozin’s presentation at the Parkinson Congress focused on his particular research into neuroprotective agents.
Wolozin used microscopic worms to study three genes known to cause Parkinson’s disease, investigating the effects these genes have on nerve cells. He discovered that the genes made the worms sensitive to toxins that attack nerve cell mitochondria, the structures that provide the energy cells need to survive. Wolozin has started testing a chemical compound that he believes will protect mitochondria from the changes triggered by these genes.
“It’s hard to guess that you could get anything relevant to people from studying worms,” says Wolozin. “But [these experiments] tell you a lot about the biology of what’s going on, so you can develop simple therapies.”
While Wolozin talked about investigating medications that could one day slow the progression of Parkinson’s, Novak’s presentation concerned his efforts to improve the brain surgery known as deep brain stimulation (DBS). DBS is what Parkinson’s patients turn to when medications fail. In DBS surgery, a thin electrode is placed into the brain and attached to a computerized pulse generator, which is implanted in the patient’s chest, much like a pacemaker. Novak has developed a method of more accurately targeting the electrical brain stimulation. DBS is performed at the Parkinson’s Disease Center, but fewer than 10 percent of patients undergo the procedure.
Far more often, people with Parkinson’s manage their disease with medication, usually taking a varying mixture of drugs over many years, some to treat the symptoms and others to lessen the side effects. At last week’s congress, Thomas spoke on a panel discussing how to administer medication to Parkinson’s patients.
“One of the unique things about this congress is that it [brought] together a number of different disciplines, as well as patients and families,” says Thomas. “It’s important for us, as nurses, to know what’s going on in the field, so we can translate that to better patient care.”
Every year, about 6,000 patients visit the Parkinson’s Disease Center for outpatient care, and an additional 1,500 are long-term patients. There are typically 15 to 20 active clinical trials at the center, in addition to a Motor Control and Tremor Laboratory and a Day Evaluation Program, in which patients are closely monitored over several hours and can talk with clinicians about such things as exercise, medication, and diet. The center also serves as the American Parkinson’s Disease Information and Referral Center for Massachusetts, linking patients to clinicians and support groups.
That kind of support is critical for Parkinson’s patients, many of whom spend years denying their disease. Take Jeff Pallotta, 61, who was diagnosed five years ago. A tremor that started in his right hand moved to his left hand and then to his legs. Pallotta’s wife tried to spur him to see a specialist by sticking pictures of Michael J. Fox under his pillow and in his pants pocket.
“I had the hand tremor and said to myself, I don’t have it; it’ll go away,” he says. “Well, come to find out, I got it, and it ain’t going away.”
After Pallotta was diagnosed, he began participating in clinical trials of new drugs, medicines that have helped bring his symptoms under control and others that may help some of the 60,000 Parkinson’s patients who are newly diagnosed in the United States each year.
“I look at it this way,” he says. “A lot of people have done what I’m doing [in clinical trials] to get me where I am right now. I feel I can do something for people down the road.”
A similar motivation led Howard Porter to form his support groups and to travel to the World Parkinson Congress last week.
“I expect something new to come out of there,” he says. “With all these people getting together, something has got to come out of it, and I want to be part of it.”