Michael J. Fox's fight against Parkinson's
Talking to Your Family About Parkinson’s-Related Dyskinesia
People with Parkinson’s disease may develop dyskinesia, an abnormal, uncontrolled, and involuntary movement that usually occurs as a complication of the long-term use of levodopa.
Dyskinesia can be isolated in one body part — such as the head or one limb — and may appear as head bobbing or fidgeting. It can also move throughout the body, making a person appear to be writhing or wriggling. Sometimes it can be so subtle that only a trained neurologist could identify it, but it can also be extremely pronounced and may seem to consume the whole body.
A fear of dyskinesia, however, shouldn’t keep you from taking levodopa. The medication is considered the “gold standard” for treating the symptoms of the disease, and the Parkinson’s Foundation urges people not to delay their treatment for too long.
Alexander Pantelyat, MD, the director of the Johns Hopkins Atypical Parkinsonism Center in Baltimore, has encountered this misconception about levodopa. “Despite my best efforts in counseling about the benefits of medication,” he says, “sometimes the patient still interprets what I say as: ‘My disease is going to progress faster if I take higher doses of levodopa,' which is simply untrue.”
“There is now evidence from multiple studies and thousands of patients with Parkinson’s disease that shows that’s not the case,” he continues. “And there’s at least one large study that suggests that levodopa may slow progression.”
The bottom line, says Dr. Pantelyat, is that treatment [with levodopa] will improve the patient’s quality of life.
Managing Parkinson’s Disease With Medication
Managing Parkinson’s with levodopa is often a trade-off. Too much levodopa can bring on more severe dyskinesia; too little can mean the patient experiences more “off time,” or periods when the medication isn’t working.
“It can be debilitating when the medication has worn off or is not working well,” Pantelyat explains. “[In this case, the person] is really bothered by the symptoms of Parkinson’s.
“Unfortunately,” he continues, “the management of dyskinesia very often involves a reduction in levodopa — so as the dyskinesias improve, the off time typically worsens. There has to be a balance, and so it’s an ongoing discussion that I have with patients and their caregivers."
Thomas emphasizes the importance of taking your prescribed dose of medicine as regularly as possible. “Knowing when and how to take the medication can help reduce dyskinesia,” she says. For example, talk to your doctor about whether you should take levodopa 30 to 60 minutes before eating a meal or, as recommended by the Parkinson’s Foundation, whether it’s better to take the medication with food that doesn’t contain protein.
How to Talk About Dyskinesia With Your Loved Ones
“For the vast majority of people, [dyskinesias] do not present a problem, even over the course of years,” says Pantelyat. However, he says, “dyskinesia can cause embarrassment and annoyance for friends and family members.” Here are a few things to do when talking to a loved one about your condition.
Explain how you’re feeling.
Try telling your spouse, family member, or caregiver, “I’m not in pain — in fact, I feel better.” When people experience dyskinesia, they may grimace or appear to be writhing, which can be upsetting to others. But, says Thomas, “a person generally feels less stiff and has better mobility when they have dyskinesia.” When your family and friends realize that these movements aren’t distressing for you, it can help ease any discomfort.
Understand that your emotions can exacerbate dyskinesia.
It’s not uncommon for people with Parkinson’s to be unaware that they’re experiencing dyskinesia, says Thomas. Stress and anger can trigger or exacerbate dyskinesia, but so can happiness. Those around you should not assume that you are upset or in distress because of increased movements.
More severe dyskinesia can bring on additional complications, however, and in that case, says Thomas, “there can be an increased risk of a fall or an inability to do certain activities.” Your partner or family may be called on to take a more active role in caring for you.
Ask your family and friends to go out with you.
Socializing is a crucial part of managing Parkinson’s — even if it feels uncomfortable at first. “This disease can be incredibly isolating for people,” says Pantelyat. “It can be compounded by a number of things: embarrassment about the tremors and the dyskinesias, a perception that people don’t want to associate with you, and the stigma that still exists in respect to Parkinson’s.”
It’s also important to keep exercising. “I can’t emphasize it enough,” says Pantelyat. “Exercise, exercise, exercise. Not only is exercise great for reducing anxiety and improving mood, currently it shows the best evidence of slowing down the progression of brain cell loss in Parkinson’s.” Any movement is good, but it could be particularly helpful to pick activities that involve socializing, such as tai chi classes or ballroom dancing.
If you keep a positive outlook, Pantelyat says, your likelihood of effectively managing Parkinson’s and dyskinesia is vastly improved. “I heard a great expression in my clinic,” he says. “[A woman wanted her husband] to become a Parkinson’s warrior, which I think is a great way to approach the disease. Keeping a positive attitude really helps.”
Above all, never get discouraged. “It may sound trite, but take life one day at a time,” says Pantelyat.
Video: What should you expect after a Parkinson's diagnosis? (No Doomsday Talk!)
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