You Have Parkinson’s Disease. Now What?
Hearing the words “You have Parkinson’s disease” is life-changing. For some, a diagnosis might come as a relief, especially after months of confusing symptoms. For others, it comes as a shock, complete with feelings of disbelief and despair. But for most patients, no matter how they feel on diagnosis day, questions about treatments and daily living abound. Below are 10 tips (in no particular order) for newly diagnosed patients on what to expect and how to respond.
1. Don't panic. “A lot of the patients who come to me are really worried about how long they will live,” says Jerome P. Lisk, MD, FAAN, an assistant professor at the University of Texas Health Science Center at Tyler and director of Movement Disorders at Christus Trinity Mother Frances Hospital in Texas. “They treat a Parkinson's diagnosis like a cancer diagnosis, and it's really not.” Parkinson's patients live an average of 15 years past the initial onset of symptoms, Lisk says—some less, and some more.
2. Exercise regularly. From a treatment perspective, there are few things more important than daily exercise, Lisk says. Exercise has been proven to improve Parkinson’s symptoms such as balance, flexibility, and grip strength. What's more, research has shown that the earlier patients start a consistent exercise regimen, the slower their symptoms will progress, and those who engage in 2.5 hours of exercise a week will have a better quality of life. If cardio isn't possible, yoga and stretching have also been shown to help stave off mental and physical decline.
3. Take careful notes. Getting an accurate time frame of when symptoms start can make a huge difference in diagnosis and treatment, Lisk says. What might look like typical Parkinson's disease might actually be a number of similar conditions such as Lewy body dementia or other atypical Parkinson’s disorders, such as multiple system atrophy, progressive supranuclear palsy or corticobasal degeneration. Take careful notes and keep a time line of when symptoms started—not just when they got worse. Consider downloading health and wellness apps to help with journaling of your PD journey.
4. Watch what you eat. “There's no magic diet” when it comes to lessening Parkinson's symptoms, says Georgeta Varga, MD, director of the Movement Disorders Clinic at the University of Texas at Austin. But maintaining a healthy diet can improve overall well-being and eating certain foods may help some medications to work better. “Eat what your grandmother would eat,” she tells patients—in other words, nutrient-dense, whole foods instead of sugary or processed treats.
5. Stay away from Google. “Knowledge is power,” Lisk says, “but you have to educate yourself through the right sources.” Lisk cautions new patients against Googling random symptoms and instead directs them to reputable websites such as the Michael J. Fox Foundation for Parkinson's Research and the National Parkinson's Foundation. The best source, however, is your doctors.
6. Stay social. “Sometimes people with a Parkinson's diagnosis will stop going outside because they're embarrassed of their symptoms,” Lisk says. “But part of learning to live with Parkinson's disease is learning to live in public. Not going outside and living life is a form of denial,” he says. “Socializing helps the brain remain active and promotes mental health.”
7. Keep your brain active. “One aspect people worry about with Parkinson's is dementia,” Varga says, which may be reduced with physical movement and cognitive exercises. “Every time you use your hands, you also use your brain,” Varga says. “And when you reinforce those connections in your brain, you keep them stronger for longer.” Try to learn new things every day to reinforce these brain memory networks, Lisk adds, which will help with thinking and memory.
8. See a specialist. Although neurologists and primary care doctors are able to diagnose Parkinson's, the risk for misdiagnosis is high, Lisk says. Seeing a movement disorder specialist—a neurologist with additional training in Parkinson’s disease—early on can mitigate the risk of being misdiagnosed as well as keep you up to date on the appropriate therapies.
9. Join a sleep study. “Just because you're unconscious does not mean you're getting restorative sleep,” Lisk cautions. Patients with Parkinson's may have sleep apnea or other complications like overactive bladder that lead to poor sleep and can worsen Parkinson's symptoms, Lisk says. A patient’s tremors, rigidity, and dyskinesia are often worse after lack of sleep, adds Varga. A sleep study can reveal the quality of sleep a patient is getting and clue doctors in to what therapies might help.
10. Be mindful of other health problems. While managing Parkinson's disease should be a priority, it's easy to start forgetting about other medical problems, Varga says. “Those other problems are usually ones that make the Parkinson's patients immobile or put them in the hospital, and then their Parkinson's gets much worse after that.” Varga cautions people to pay close attention to other co-morbid diseases such as diabetes, hypertension, and heart disease.