VeryWell Informed

Understanding Dyskinesia

Tools and Tips for Living Well

By Colleen Doherty, a Board-Certified Physician

Dyskinesia Illustration

What Is Dyskinesia?

With Parkinson’s disease, abnormal movements like jerking, twisting, writhing, or fidgeting are out of a person’s control. They’re described as dyskinesia and may occur over the whole body or only a single part, like an arm or leg or the head or trunk. They can also affect speaking and breathing muscles.

When imagining these movements, it’s important to keep in mind that their severity varies greatly from person to person. Also, not everyone with Parkinson’s experiences dyskinesia. It is often a result of long-term levodopa (also called L-dopa) use, the most effective medication for treating Parkinson’s symptoms. Factors like age, duration of disease, treatment dosage, and genetics also play a role.

Dyskinesia Illustration

While dyskinesia is an unfortunate side effect of Parkinson’s treatment, there are effective ways to manage it: Both pharmaceutical and day-to-day strategies have helped thousands of people improve their quality of life. Before delving into these options, it’s important to clear any confusion around the term “dyskinesia,” its common manifestations, and related conditions. Empower yourself by understanding the differences.

Treatment Options

Not everyone with dyskinesia needs treatment—mild dyskinesia is usually tolerated well and seen as a reasonable compromise to enduring the stiffness and slowness of Parkinson’s disease. More troublesome dyskinesia, however, makes daily activities a struggle.

If the ability to work or eat is compromised, assistance is needed for normal everyday activities like dressing and washing, or other basic functions like walking at home or being with others in a social setting (emotional excitement may worsen dyskinesia) are impacted, consider the various treatment strategies available to improve quality of life.

Treatment Goals

Experts believe that varying dopamine levels (and likely other brain chemicals like glutamate and serotonin) contribute to dyskinesia, so with any treatment the goal is to stabilize these levels in the brain. They’re inconsistent because in Parkinson’s disease, dopamine-producing cells in the brain die off. While levodopa restores dopamine, it only lasts so long, and you may have to take it multiple times a day. This causes shifting and inconsistent levels, as shown.

Treatment Goals

Experts believe that varying dopamine levels (and likely other brain chemicals like glutamate and serotonin) contribute to dyskinesia, so with any treatment the goal is to stabilize these levels in the brain. They’re inconsistent because in Parkinson’s disease, dopamine-producing cells in the brain die off. While levodopa restores dopamine, it only lasts so long, and you may have to take it multiple times a day. This causes shifting and inconsistent levels, as shown.

To better understand the concept, imagine a child continuously hitting the “on” and “off” button on a video game. Eventually, the video game (your brain) gets all fuzzy—it’s confused whether it should be “on” or “off,” so goes into a frenzied (“dyskinetic”) phase until normalcy is restored.

Get started by exploring these treatment options.

Take Another Medication

In early Parkinson’s, dopamine agonists may be started alone—they are less likely to contribute to dyskinesia but may cause visual hallucinations or compulsive behaviors. Once dyskinesia starts, a dopamine agonist may be taken with levodopa, usually to manage “off-period” dystonia.

There are also medications that suppress dyskinesia. GOCOVRI—an extended-release formulation of amantadine—helps, but its precise mechanism (especially its specific interaction with dopamine) is still unclear. Side effects may sometimes include visual hallucinations, dizziness, dry mouth, and ankle swelling that are reversible once the drug is stopped. You and your doctor can weigh the pros and cons, as well as try strategies for overcoming these side effects.

Adjust Your Levodopa Regimen

Your doctor will look at how much and how often you’re taking levodopa and the severity and timing of your dyskinesia, then adjust your regimen or consider a different formulation.

For example, if you experience peak-dose dyskinesia (jerky, wriggly movements within 60 minutes of taking levodopa), then more frequent, smaller doses may help. Ask about intermediate vs. extended release levodopa, or switch to levodopa-carbidopa intestinal gel infusions (LCIG). It’s pumped via a tube into the small intestine, with the dose delivery adjusted to minimize dyskinesia.

Finding a solution is a delicate trial and error process, so don’t get frustrated. Make it a priority to see your doctor, as often as you need, until you feel comfortable.

Consider Deep Brain Stimulation

Deep brain stimulation (DBS) is a surgical procedure that delivers electrical signals to brain cells, promoting normal movements.

A neurosurgeon places electrodes (thin wires) into the brain area that controls movement. They are connected to a battery-operated device called a neurostimulator that’s placed under the skin, near the collarbone. When controlled by the patient, it delivers electrical pulses that smooth out erratic nerve signals.

DBS is not a cure for dyskinesia but can minimize symptoms. Being a surgical procedure, it carries risks like stroke, bleeding, and infection, and may worsen cognitive problems so is not recommended for those with Parkinson’s disease dementia. However, it may be a viable option for some, so discuss it with your doctor.

Tips for Living Well

Exploring treatment options and initiating discussions with your doctor is a positive way to be proactive in your dyskinesia care. If you’re looking to take back some control outside of the doctor’s office, consider adopting these lifestyle habits. They’ll bring you a step further in living well.

  • Physical Therapy Physical Therapy

    Physical Therapy

    Physical therapists promote independence with unique exercises. They focus on areas of care that optimize well-being, quality of life, and safety. These areas include:

    These areas include:

    • Transfers (e.g. standing up from a chair or getting out of a car)

    • Reaching for and gripping objects

    • Maintaining balance

    • Walking, including the potential use of mobility assistive devices

  • Occupational Therapy Occupational Therapy

    Occupational Therapy

    OTs evaluate unique needs in the home, social, and/or work environment. Then they teach skills or suggest interventions that improve daily living activities and ability to perform favorite hobbies.

    For example, if dyskinesia makes bathing difficult, an OT may recommend adding grab bars, re-positioning items, or placing non-skid mats in the bathroom.

  • Manage Stress Manage Stress

    Manage Stress

    Stress, anxiety, and emotional excitement may worsen dyskinesia. Consider:

    • Exercise or Yoga: Physical activity releases “feel good” chemicals that counteract pain and relax your mind and muscles.

    • Mindfulness Meditation: Focus on the present moment to deepen calmness and reduce anxiety.

    • Emotional Resiliency: A positive mindset goes a long way. Consider volunteering, journaling, learning a new hobby, or doing something kind for yourself.

  • Find Support Find Support

    Find Support

    Whoever your “go-to” person is, having them to reach out to is key. And while reaching out for emotional support (a good cry, sigh of frustration, or embarrassed laugh) is perfectly sensible, you may also need their help when managing physical limitations of dyskinesia, which can arise unpredictably, often at the most inopportune time.

Sources

  • De Fabregues O et al. Long-term safety and effectiveness of levodopa-carbidopa intestinal gel infusion. Brain Behav. 2017 Jul 7;7(8):e00758.

  • FDA. GOCOVRI (amantadine) extended release capsules. 2017.

  • Pahwa R et al. ADS-5102 (Amantadine) Extended-Release Capsules for Levodopa-Induced Dyskinesia in Parkinson Disease (EASE LID Study): A Randomized Clinical Trial. JAMA Neurol. 2017 Aug 1;74(8):941-49.