Uncontrolled Movements In Parkinson's: Why They Happen & What Can Help

Parkinson's disease is a movement disorder that can involve several different kinds of uncontrolled movements. Some are caused by the disease, such as tremor and gait freezing, while dyskinesia – uncontrolled jerking or twisting movement – is caused by long-term levodopa use.

How does levodopa work in Parkinson's disease?

Levodopa is the gold standard treatment for Parkinson's and works by temporarily replacing dopamine in the brain. In the nervous system, dopamine is a chemical messenger released by neurons (nerve cells) to send signals to other neurons about movement. In Parkinson's, the dopamine-producing brain cells are lost and dopamine levels decrease, leading to Parkinson's disease symptoms. Levodopa effectively treats motor symptoms such as tremor, bradykinesia (slowness of movement), and muscle stiffness by crossing into the brain through what is referred to as the blood/brain barrier. It is combined in medications with carbidopa, which slows the breakdown of levodopa in the bloodstream so more medication can reach the brain. While effective at managing some symptoms, it does not slow or stop disease progression or treat non-motor symptoms like sleep issues and depression.

As Parkinson's disease progresses, more levodopa tends to be needed in order to continue managing symptoms. Patients may experience what is referred to as "off" time, when medication wears off before it's time for another levodopa dose. "Off" time can lead to motor fluctuations as well as the return of other symptoms.

Some people with Parkinson's choose to delay starting levodopa treatment. They may start by taking a dopamine agonist, a treatment option that is less powerful than levodopa/carbidopa but is also less likely to cause dyskinesia. Treatment decisions are personal for everyone living with Parkinson's, and ideally should be discussed with a Parkinson's specialist.

What causes dyskinesia in Parkinson's disease?

Unlike "off" time, patients typically experience dyskinesia in Parkinson's when medications are working and other symptoms are under control. Researchers aren't exactly sure what causes dyskinesia, but it is believed to be a side effect of long-term levodopa use and involves several different brain chemicals, including serotonin, glutamate, and dopamine.

Because levodopa is taken throughout the day, dopamine levels in the brain rise and fall. These fluctuating levels of dopamine combined with the continued loss of dopamine in the brain make it difficult to maintain regular dopamine levels, and lead to dyskinesia.

Levodopa-induced dyskinesia (sometimes referred to as LID) can sometimes be confused with Parkinson's tremor, which is a back and forth shaking caused by the disease. In contrast, dyskinesia can look like a jerking or twisting motion. These involuntary movements can also appear as head bobbing or body swaying, depending on which part of the body is affected.

Those diagnosed with Parkinson's at a younger age are more likely to experience dyskinesia. It's also more common in later stages of Parkinson's or in those who have taken levodopa for several years. 

Is tardive dyskinesia a symptom of Parkinson's disease?

Tardive dyskinesia is not a symptom of Parkinson's disease. It's a separate movement disorder caused by long-term use of anti-psychotic medications. 

In addition to being a side effect of different medications, tardive dyskinesia also has its own set of symptoms. The movements associated with tardive dyskinesia tend to be more fluid in appearance compared with Parkinson's dyskinesia.

Drugs that most often cause tardive dyskinesia include: 

  • Chlorpromazine (Thorazine or Largactil)
  • Fluphenazine (Prolixin, Modecate, or Moditen)
  • Haloperidol (Haldol)
  • Perphenazine (Trilafon, Etrafon, Triavil, or Triptafen)
  • Prochlorperazine (Compro, Darbazine, or Neo Darbazine)
  • Thioridazine (Mellaril)
  • Trifluoperazine (Stelazine or Stelbid)

Dystonia vs. dyskinesia in Parkinson's disease

Dystonia can refer to a Parkinson's symptom, a type of dyskinesia caused by levodopa side effects, or an entirely separate movement disorder. In general, dystonia is muscle stiffening and painful twisting. 

When muscle twisting and cramping lasts longer compared with normal dyskinesias, it can be referred to as dystonic dyskinesia.

When it's a Parkinson's symptom, dystonia can be treated with levodopa, botulinum toxin injections, and physical therapy. Deep brain stimulation (DBS) surgery may also help dystonia symptoms in Parkinson's.

If you're unsure whether your muscle cramping or twisting is caused by Parkinson's or your medications, consider keeping track of your symptoms in a journal or on your phone. If you experience twisting when your other symptoms are well-managed, it may be dyskinesia. If cramping happens during "off" time, your dystonia may be a symptom of Parkinson's.

Dystonia is also a movement disorder that can occur without a Parkinson's disease diagnosis. Symptoms include uncontrollable muscle contractions that can lead to uncomfortable postures, foot dragging, and other symptoms. Both the movement disorder dystonia and Parkinson's disease originate in the same part of the brain – the basal ganglia – which could be one reason symptoms are related.

How is dyskinesia treated in Parkinson's disease?

If dyskinesia is interfering with your daily life, talk with your neurologist or movement disorder specialist. Because they are trained specifically in conditions like Parkinson's, movement disorder specialists are best equipped to recognize the signs of dyskinesia and help explore treatment options.

To prepare for your appointment, keep a symptom diary and make note of your medication dose timing. You can also consider asking a friend or family member to take a video of you when you believe you're experiencing dyskinesia so you can show your doctor.

Treatment options for dyskinesia include:

  • Changing the dose/timing of levodopa: For some people with Parkinson's, lowering the dose of levodopa can help control dyskinesia while still managing motor symptoms.

  • Switching to extended-release levodopa: Treatment options such as Rytary (extended-release levodopa) and Duodopa (an intestinal gel infusion of levodopa) can help keep dopamine levels steady in some patients and help manage dyskinesia.

  • Amantadine: Gocovri (amantadine extended release) was approved in the U.S. in 2017 to treat Parkinson's disease dyskinesia. The treatment works on the glutamate brain system to reduce dyskinesia symptoms. In countries where Gocovri has not been approved, patients may still be prescribed immediate-release amantadine. 

  • Deep brain stimulation (DBS): This surgical treatment option for Parkinson's disease can be an option for patients who experience significant "off" time and dyskinesia with levodopa treatment.

  • Stress relief: Stress and strong emotions can make dyskinesia worse. While reducing stress is easier said than done, try to find techniques that help you personally relax, such as exercise, meditation, or reading a book.

Clinical trials for dyskinesia in Parkinson's

Existing options for treating dyskinesia don't work for everyone. Clinical trials are researching potential new treatment options for dyskinesia – and need volunteers to take part. If you're interested in finding a clinical trial, answer a few questions below to start.