Paul Tom was walking with his wife about five years ago when she noticed he wasn’t moving his arms and one arm hung lower than the other. More than two years later, a neurologist who specializes in movement disorders diagnosed Tom with Parkinson’s disease, a brain disorder that’s become one of the world’s fastest growing in diagnoses.
Tom said he wasn’t surprised. He already had researched the chronic disorder that causes movement difficulty, primarily impacting men over 50. “I kind of knew I had it. I was kind of glad. It could have been something worse,” said the 74-year-old retired Brookhaven management consultant.
About 1 million Americans have Parkinson’s, among more than 10 million people worldwide.
The disease gained attention in July when President Joe Biden signed the National Plan to End Parkinson’s Act, which is expected to increase federal funding for research, create paths for treatments and cures, and improve early diagnosis, among other benefits. The actor Michael J. Fox has also promoted awareness of the disease and raised millions for research through his own foundation. He was diagnosed with young-onset Parkinson’s at age 29 while filming Doc Hollywood in 1991.
Credit: Colin Tom
Credit: Colin Tom
The chronic disease results from the loss of dopamine, a chemical in the brain that sends signals to control movement and thoughts. Early symptoms include trembling or shaking, muscle stiffness and slow movement, according to the American Parkinson Disease Association (APDA). The disease becomes worse over time with such symptoms as poor balance and involuntary, unpredictable movements that may lead to falls and the need for a walker or wheelchair.
So far, there’s been no cure for the disease or proven treatment to delay its progression. The best medicine to treat its symptoms was discovered more than 50 years ago.
Researchers also aren’t sure what causes Parkinson’s, though they suspect genetics or exposure to pesticides or other environmental pollutants.
More than 3,000 research studies are investigating new drugs, therapies, tools, devices, surgeries, and targeted treatments, according to clinicaltrials.gov. Many of the studies focus on diagnosing the disease earlier and slowing the development of the symptoms. Emory University is among the research centers looking for solutions.
“I understand the frustration of patients,” said Dr. Stewart Factor, an Emory neurologist, neurology professor and director of the Emory Comprehensive Parkinson’s Disease Center and the Movement Disorders Program. “We are still learning. … There are a lot of unanswered questions.”
Researchers are working to learn what causes dopamine cells in the brain to die and when it starts to occur. It could begin decades before the disease onset, Factor said.
Among its current research projects, Emory is working with the Michael J. Fox Foundation on the Parkinson’s Progression Markers Initiative, studying biomarkers, which are chemical indicators in the body that might signal a patient’s risk of developing the disease. They can also indicate the best treatment to slow its progression.
Last year, the U.S. Food and Drug Administration approved the expanded use of focused ultrasound, a technique that uses sound waves rather than surgery to make a lesion in the brain to alleviate tremors, Factor said.
Worldwide, researchers are studying new formulas and ways to deliver the main drug used to treat the disease since the 1960s, levodopa. Patients take the medicine throughout the day whenever symptoms return. A new version of the drug that can be infused under a patient’s skin to provide continuous relief came on the market in Europe earlier this year and may soon be available in the United States.
Researchers are also studying the use of GLP-1 drugs, popularly used to regulate blood sugar in diabetes and to treat obesity, to help improve movement and memory in Parkinson’s patients.
“There’s a big move in research to try to find drugs that will alter the progressive course of the disease,” Factor said. “The only thing that alters the trajectory thus far has been exercise. People who do exercise regularly seem to do better in the long run.”
The Parkinson’s Foundation, among others, cites research showing exercise can help slow the decline in quality of life that comes from the disease and improve mobility, flexibility and balance. Emory is part of a major nationwide clinical trial studying the effects of moderate- and high-intensity aerobic exercise on disease progression in patients with Parkinson’s.
Factor remains optimistic. “We are really making progress. It’s just that we do not have a cure yet. … These kinds of advances take a long time to figure out.”
Tom welcomes any advancements. He knows treatment for the disease has been limited for many years to medication, lifestyle changes such as intense exercise, and in some cases, surgery.
He takes a single medicine combining levodopa with another drug, carbidopa, nine times a day to restore dopamine. “When I’m using it, I can tell the difference.” He also exercises one to two hours a day: 100 pushups and alternating between weightlifting, boxing, yoga, tai chi, and rigorous calisthenics. “I treat physical exercise like medication,” he said. “Maybe I can control the symptoms and not let them kill me.”
Exercise has helped Tom avoid injuring himself when he falls about once a month. “I have to think about everything I do. Nothing is automatic. I talk to myself: big steps, swing arms. I can lose my balance, so I swing my arms to keep my balance and not fall.”
Tom still believes he’s luckier than most because he still remains active and social, among his keys to coping with the disease. “Don’t try to do this alone.” He joined the APDA Families support group for Parkinson’s patients and their care partners, and a month later he started leading it. Fluent in five languages, Tom recently started a support group for Spanish and Portuguese speakers, which will begin meeting in September.
For now, Tom retains a positive outlook about his future with affirmations such as his email signature quote: “My faith is stronger than my fears.” And he’s hopeful research will lead to a cure or remedy to delay the disease. “If it happens in my lifetime, I’ll be grateful.”
For more information:
The Georgia chapter of the American Parkinson Disease Association will hold a research symposium for Atlanta residents with Parkinson’s and their families, 9:30 a.m.-12:30 p.m. Aug. 17 at Emory Brain Health Center. The topic is “What is the Latest in Research from Emory University.” The event is free but registration is required. To learn more about Parkinson’s disease in Georgia, visit www.apdaparkinson.org/GA.
