What Is It Like to Take Levodopa for Parkinson’s Disease?
Key takeaways:
Parkinson’s disease is a progressive neurodegenerative disorder that affects movement.
Levodopa is a medication commonly used to manage the motor symptoms of Parkinson’s disease by converting to dopamine in the brain.
Three people with the disease explain how a combination of medications and exercise help them manage Parkinson’s disease.
The Parkinson’s Foundation has called levodopa — a medication commonly used for managing the motor symptoms of Parkinson’s disease — “one of the most important breakthroughs in the history of medicine.”
The medication developed in the late 1960s, also known as L-dopa, is often one of the first medications doctors prescribe to people newly diagnosed with Parkinson’s disease. Levodopa is prescribed in combination with the medication carbidopa, which reduces side effects, including vomiting and nausea. The carbidopa / levodopa combination is often called by its brand name, Sinemet.
Levodopa does not slow the progression of Parkinson’s. It works by being converted to dopamine in the brain, which helps alleviate symptoms — such as stiffness, tremors, and poor muscle control — associated with Parkinson’s disease.
About 1 million Americans have Parkinson’s, a progressive neurological condition that affects movement and coordination. Parkinson’s stems from a lack of dopamine, a chemical in the brain that affects everything from mood to movement and memory. It is unknown what causes the nerve cells that produce dopamine to begin dying.
Three people with Parkinson’s share that managing the disease is about more than taking medications.
He gets by with a little help from medication, exercise, and support groups
Gregg Hummer was about 55 when he began showing signs of Parkinson’s disease. He was often tired, taking naps that grew longer over time. His work required him to climb a ladder and set up project displays. But he became unsteady on the ladder and often dropped the items he was working with.
When taking walks with his wife, he found himself struggling to maintain her pace — even though he’s 6-foot-3 and she’s about 5 feet tall.
His doctor ordered a blood test and a heart test, “and I passed them all,” says Gregg, who lives in Jacksonville, Florida. “Finally, the tremors started, and that’s when he suspected [Parkinson’s]. Usually, tremors are first. But for me, they were the last.”
Gregg was officially diagnosed at age 57. He was pushed into early retirement soon after.
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The carbidopa / levodopa combination was the first medication Gregg’s doctor prescribed him. Gregg started taking the medication twice a day. His tremors lessened slightly. His doctor upped his dosage to 3 times a day and then 5 times a day.
“Carbidopa / levodopa is the fundamental thing that helps me. And when it’s wearing off, I know it,” says Gregg, now 67. “I start losing my balance, and my tremors start increasing.”
In an attempt to address the bad days, when the medication wears off, Gregg says he had considered trying deep brain stimulation, For now, he’s opted for medication management.
In addition to medication, Gregg says exercise is key to managing his disease both physically and mentally. So is staying engaged. He is the chairman of the Parkinson’s Support Group of Orange Park, Florida. He also leads a weekly exercise class designed for people with Parkinson’s.
“We sing the Mickey Mouse song. We do the hokey pokey. We do silly things, but it keeps the mind going, and you’re with people,” Gregg says. “It helps with depression and helps with the medicines. I’ve got to live my life as full as I can, and that includes trying to help people.”
Her go-tos for neck issues: Botox and boxing
Cindy Finestone had long dealt with headaches and neck issues. But her doctors didn’t suspect she had Parkinson’s disease until 11 years ago, when she noticed one of her hands twitch for 30 seconds.
“I ran a pulmonary lab for years — so I knew that it could be one of three things: Parkinson’s, MS [multiple sclerosis], or a brain tumor,” says Cindy, 64, who’s now retired and living in Rochester, New York. “That’s when I was diagnosed.”
A twitching hand had prompted her to consult a healthcare professional, but shaking and tremors were not parts of her presentation. Instead, she had severe cervical dystonia, a rare disorder that can cause the head to twist or tilt forward or backward.
“That’s how I exhibit my Parkinson’s,” Cindy says. “It’s mostly in my neck.”
Cindy began taking levodopa / carbidopa twice daily in 2017. Her biggest side effect was fatigue.
“I remember thinking, ‘I don’t know if I really need this,’” she says. “You don’t want to go on any medication right away because you hear it doesn’t last forever, and you’ll get over it and it won’t help.”
Seven years later, Cindy takes the same dose 4 times a day, along with other medications.
“Early on, I wasn’t always keeping track of what time it was and when I should take it. If I were an hour late, it didn’t bother me,” she says. “I keep much better track [now], and there are times when I do need it. My neck starts to bother me. I do notice the difference.”
Regular Botox shots at the base of Cindy’s neck — originally every 3 months and now every 6 to 8 months — also play a critical role in her disease management, she says. She rounds out her care routine with exercise. Rock Steady Boxing, an exercise program designed for people with Parkinson’s, is one favorite. When she began doing it, she couldn’t keep her head forward. But boxing while holding a ball under her neck, and working with a trainer to strengthen her neck muscles, helped change that.
Cindy says the combination of treatments has completely changed her life. When her neck caused her head to tilt back, she’d go to events early so fewer people would see her struggle to walk. She no longer has to.
“People who haven’t seen me in a long time think I had surgery,” she says. “But it was Botox, medications, and exercise that have helped me maintain a healthy quality of life while living with Parkinson’s.”
She credits exercise for slowing Parkinson’s
About 10 years ago, when Kathleen Blake noticed pain and stiffness in her left shoulder, she didn’t think there was a serious problem.
“I just thought it was aches and pains — getting older, too much exercise, whatever,” says Kathleen, a 70-year-old retired cardiologist in Santa Fe, New Mexico. “Even my doctor thought it was arthritis. I had physical therapy, and it worked great.”
Her shoulder symptoms came and went a few more times. But when her hand began shaking, she saw a neurologist. She received a life-changing diagnosis: Parkinson’s disease.
The first “medicine” she used to alleviate her symptoms? Exercise, “the only thing so far that’s been shown to slow the progress of the disease and to be consistently effective,” she says.
Two years later, her doctor prescribed levodopa / carbidopa 3 times a day.
“Within about an hour of when I take it, I have much less stiffness,” says Kathleen, who volunteers as vice chair of the Parkinson’s Foundation’s People With Parkinson’s Advisory Council. “The tremor is less. I just feel like I have more energy, maybe because it’s easier to move around and get things done.”
Five years later, Kathleen still takes carbidopa / levodopa prescription. The only difference, she says, is how long the dose remains effective. At the beginning, she says, she noticed that the effectiveness “would last even beyond the next dose. I had some margin, so if I forgot to take it or was a half hour late [taking it], I wouldn’t notice. Over time, that margin has shortened.”
Kathleen says exercising continues to be the other most consistently effective way to keep her symptoms in check. She works with a personal trainer, frequents the gym, and takes Pilates classes.
“That, for me, is the baseline in managing my symptoms,” she says.
She urges other people with Parkinson’s to make movement a priority. Because the disease can also affect speech, that can include exercising the vocal cords by singing or shouting.
“The best exercise for Parkinson’s is the one you will do,” Kathleen says. “If you want to go to the gym or the dance studio or whatever, do it. It doesn’t have to be one thing.”
What does the doctor say?
Patricia Pinto-Garcia, MD, MPH
Senior Medical Editor
Parkinson’s disease is a neurological condition that gets worse over time. There’s no cure for Parkinson’s disease, but there are treatments that can slow the progression. Medication can also help ease some of the symptoms. Sinemet (carbidopa / levodopa) is one of the most important tools for Parkinson’s treatment. As these stories show, people with Parkinson’s depend on this medication.
People typically need to adjust their prescription over time as their Parkinson’s changes. Higher doses or the same dose taken more often can help replace lost dopamine. Sinemet can lead to side effects. These can often be managed by adding additional medications or adjusting Sinemet dosing.
It’s important to see your neurologist regularly if you have Parkinson’s disease. Let them know if you feel your medication isn’t working as well as it used to or if you’re experiencing side effects. There are often steps you can take to help ease your symptoms and improve your experience with the medication.
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