Living with Parkinson’s disease
If you or someone close to you has been diagnosed with Parkinson’s disease, you probably have a lot of questions and concerns. That’s totally normal. The disease can be hard to figure out. Many of its symptoms are also symptoms of other health issues. And it’s hard to predict how Parkinson’s will affect you. Different people experience different symptoms at different rates.
Parkinson’s disease is a brain disorder that causes uncontrollable movements. This includes things such as shaking or trouble with your coordination or balance. That’s why you might hear Parkinson’s called a movement disorder. Another common symptom is slurred speech.
Parkinson’s affects nearly 1 million Americans. And that number is expected to reach 1.2 million by 2030. Here’s what you should know about Parkinson’s and its available treatments.
And if you’re prescribed medication for Parkinson’s, show your pharmacist this free prescription discount card. It could save you up to 80% on your medications.
What causes Parkinson’s disease?
We don’t know exactly what causes Parkinson’s. “The core of Parkinson’s is a loss of the brain cells that make the chemical dopamine,” says Rachel Dolhun, MD. She’s the senior vice president of medical communications at the Michael J. Fox Foundation. The foundation funds research into the disease.
Dopamine is known as the feel-good brain chemical. But it does a lot of other jobs in your body, too. “Dopamine manages movement, mood, motivation, memory and attention,” Dr. Dolhun says.
With Parkinson’s disease, the part of the brain that makes dopamine begins to decline. So levels of dopamine get lower and lower. That makes your brain less able to send clear signals to your body. And that means simple activities such as getting dressed or walking to the mailbox become tough to do.
Who gets Parkinson’s disease and why?
People often associate Parkinson’s with older men. Some research does show that men get it more often than women. But women aren’t resistant. And the disease can crop up at any age. Most people get it after age 60. But up to 10% of people have symptoms earlier. Actor Michael J. Fox discovered that he had Parkinson’s in 1991 at age 29.
Scientists think that genetics cause only about 10% to 15% of cases. The most likely cause is a combination of genetics and environmental factors. Those factors could include exposure to certain chemicals or even a head injury.
How Parkinson’s disease is diagnosed
The classic symptoms of Parkinson’s are slow movement, stiffness and tremors. Those symptoms are key to how doctors find the disease because there’s no test for it. (The exception is the small percentage of cases caused by a genetic mutation.)
If you have symptoms, see your doctor right away. Ask to see a doctor who specializes in movement disorders. A link to a list of specialists is available on the Michael J. Fox Foundation website.
Parkinson’s disease can also show up in other ways. And sometimes these sneakier symptoms happen first. “Long before the onset of motor symptoms, patients can have all these non-motor symptoms,” says Delaram Safarpour, MD. She’s an assistant professor of neurology at Oregon Health & Science University.
Those symptoms could include:
- Asymmetric shoulder pain (pain on only 1 side)
- Loss of smell
- REM behavioral disorder (this happens when you act out dreams during sleep)
Many of these symptoms could be caused by something other than Parkinson’s. So it’s easy to see why misdiagnosis is common. That’s another reason to talk with a doctor who has expertise with the disease.
Recommended reading: How to quickly measure the health of your brain.
How do you treat Parkinson’s disease?
Despite decades of research, there’s still no way to cure or slow down the disease. On the plus side, the disorder often progresses very slowly. That’s not to sugarcoat things. Parkinson’s does decrease life expectancy overall, says Dr. Safarpour.
“But most people with Parkinson’s disease live very long lives,” she says. “Many live decades with the disease.” Fox, for instance, is 61. Singer Neil Diamond and Reverend Jesse Jackson are other famous examples.
While there’s no cure, there are treatments that can help you live with the disease more comfortably. “There are around 40 medications and surgeries that are available to manage the different symptoms of Parkinson’s,” Dr. Dolhun says. Almost half of those have been approved since 2014. Increased awareness and funding for research are leading to more and better ways to fight the disease.
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Many medications focus on dopamine replacement. The most common medication is levodopa, which has been around since the 1960s. The body converts levodopa into dopamine. This helps replace what’s lost due to the disease.
Levodopa is usually used with carbidopa. Carbidopa keeps levodopa from turning into dopamine before it reaches the brain. So it helps levodopa get to where it’s needed most. Carbidopa also limits side effects such as nausea. Levodopa/carbidopa combinations include Sinemet®, Rytary® and Duopa. You can get the medication in pill form or as a gel that’s infused directly into the small intestine.
There are other medications, too, that work in various ways:
- Osmolex® ER, Gocovri® (amantadine): Works on chemical pathways in the brain to increase dopamine
- Neupro® (rotigotine): Mimics the effect of dopamine
- Cogentin® (benztropine): Restores the brain’s balance of dopamine and acetylcholine (another chemical that conducts messages from the brain)
- Zelapar (selegiline): Slows down the enzymes in the brain that break down dopamine
(Be sure to download our free mobile app to find the best price on your medications at a pharmacy near you.)
Patients also have surgical options. The most common surgery is called deep brain stimulation. A surgeon places thin metal wires in the patient’s brain. The wires then send electrical pulses through the brain. This helps control some of the movement symptoms, such as stiffness or sudden uncontrolled motions.
Assembling a care team
One of the most important things Parkinson’s patients can do is put together a care team. This includes doctors, therapists, family and friends. “You want an expert doctor at the helm to coordinate everything,” Dr. Dolhun says.
Dr. Safarpour agrees. “The best treatment for patients will come from a multidisciplinary team,” she says. “And patients are one of these team members.”
Don’t be afraid to ask questions and lean on your team for support. You can live a long life with Parkinson’s. Take advantage of all your treatment options and have an active role in your care plan.