It’s true. Rates of Parkinson’s disease are growing faster than any other neurological condition in the world, with incidence projected to double in the coming decades. Parkinson’s is a progressive disorder that affects the brain, nervous system, and muscle control. As singer-songwriter Carly Simon, who recently announced her Parkinson’s diagnosis, said, this condition is "not a blessing or a gift."
I understand. As a physician and scientist specializing in Parkinson’s for over 20 years, I’ve seen its impact on patients and their families. Currently there is no cure for Parkinson’s, and while pills and other symptomatic therapies are helpful, eventually the disease worsens over time.
The sobering truth is Parkinson’s changes lives. The greatest fear among those without the disease is the loss of physical independence of their loved ones, and those living with the disease fear its progression and what challenges each new day might bring.
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Knowledge can be a powerful antidote to fear. When it comes to brain health, however, while there’s interest, there are gaps. The Dana Foundation reported that brain health is a top priority for Americans, but 66% report having little or no knowledge about brain health research, with older Americans reporting the lowest levels of knowledge.
Better understanding of Parkinson’s removes the mystery, may help people concerned about or currently living with it create a plan, and provides reason for all to believe there could be a better future for those who receive a diagnosis. Here are five points to provide clarity, prompt action, and give hope.
Get moving, every day. Whether or not you have Parkinson’s, regular exercise promotes brain health. For those with the disease, at least 2.5 hours of consistent exercise per week can slow symptom progression and improve physical and emotional well-being. Studies also show that high levels of regular physical activity are strongly associated with a better clinical course of disease. What kinds of exercise are best? Anything that gets you off the couch. Some of my patients have taken up boxing and dance.
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Be heart-healthy. What is good for the heart is also good for brain health. Heart-healthy habits such as a well-balanced diet, quality sleep, and not smoking are part of healthy living that keeps the heart strong and protects the small blood vessels that supply blood and oxygen to the energy-hungry brain cells.
Stay involved. I’ve seen Parkinson’s unlock new artistic skills and interests. Find projects that keep you interacting with others and demand mental effort—important for everyone and critical for those with Parkinson’s. Social interaction and engagement may help maintain daily function, contribute to brain health, and improve overall well-being.
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Consider sharing your diagnosis if you have been told you have Parkinson’s disease. This is a very personal decision. Research shows some stay silent about Parkinson’s, citing concerns about discrimination at work, stigma, or losing their dignity. Silence can be isolating. Conversely, sharing the diagnosis can deepen bonds with family and friends. I’ve seen families get closer and my patients’ friends really rally, offering daily walks, games, classes, and get-togethers. The Michael J. Fox Foundation provides support for those interested in discussing their disease openly.
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Know that strides are being made to find new ways to tackle the biology of Parkinson’s, possibilities that were previously beyond reach. The development of an investigational gene therapy I’m involved with, for example, is aimed at stopping the clock on disease progression, with a goal of helping patients maintain or improve their Parkinson’s motor symptoms so that daily life and activities are minimally disrupted, compared with later-stage symptoms. Scientists in academia and industry are advancing molecular neuroscience, gene delivery, imaging, and biomarkers. While these efforts haven’t yet simplified the complexity and unpredictability of Parkinson’s, there is reason to hope we’ll see advances in Parkinson’s care that go beyond symptom management.
As a doctor, Parkinson’s disease is humbling. My patients want more from Parkinson’s medicines and a different future after diagnosis.
I do, too.
As a scientist, I see growing momentum and a growing body of evidence that keeps progress moving forward so patients and families living with Parkinson’s disease can, too.