Dyskinesia and Dystonia: Speaker Notes

We welcomed Dr. Hannah Walters, MD, Neurologist/Movement Disorder Specialist, to our March 3 meeting via Zoom, who spoke about dyskinesia and dystonia in Parkinson’s disease.

DYSKINESIA are movements outside of tremor, what Dr. Walters called, “the paradox of too much movement.” Dyskinesia is involuntary and uncontrollable, some times exhibiting as erratic and writhing whole body movements, other times just movement of the hands or face. For some people, there is only a feeling of restlessness (without movement), or akathisia.

Dyskinesia is not a symptom of Parkinson’s disease; it is a side effect of the medication used to treat it, a combination of medication and disease. “Not everyone with Parkinson’s disease gets dyskinesia,” Dr. Walters said. Estimates range widely from 30-80%. In an observational study, Parkinson’s Progressive Markers Initiative (PPMI), sponsored by The Michael. J. Fox Foundation, collected eight years of data and concluded, on average, it takes 5-6 years to develop dyskinesia. A Minnesota study reported after ten years, 60% of people with Parkinson’s had dyskinesia. 43% needed a medication adjustment and only 6% were unable to have controlled by medication.

“Females have a higher risk of developing dyskinesia,” Dr. Walters said. The theory is we weigh less, so the dosage of medication is higher per body weight compared to men. Some experts theorize the reason could be hormonal or that women have a different variation of the disease. Other risk factors that increase the chances of developing dyskinesia include: (1) younger age at onset; (2) dosage and length of time of taking levodopa; and (3) type of Parkinson’s: people who initially present as tremor-dominant have less risk than those with a slow and stiff initial presentation.

To complicate things even further, some people experience peak dose dyskinesia, others dysphasic dyskinesia (as meds kick-in or wear off and levodopa levels are rising or falling). Treatment approaches include changing dosage, timing, or formulation of levodopa medication (such as switching from an immediate release to a time-released form of medication). Sometimes Dr. Walters will add meds, sometimes take some away. Deep Brain Stimulation (DBS) is also an option. Physical therapy is a good add-on treatment to work on coordination and balance.

DYSTONIA is sustained or intermittent muscle contraction. The twisting, spasms, and abnormal posturing from overactive muscles contracting when they shouldn’t can be painful. Although often experienced as toes curling or extending, dystonia can occur in any part of the body, including the eyes (causing blinking) and mouth.

Dystonia can be triggered or worsened by voluntary action. It may exist as a distinct disorder or can be a part of dyskinesia where the uncontrollable abnormal movements are more sustained and more painful. Dystonia usually occurs during off periods and also in the early mornings.

Treatment for dystonia, like dyskinesia, depends on when it occurs. Medication adjustments and physical therapy as an add-on can be effective. Targeted botulinum toxin therapy (botox) may also help, although Dr. Walters said not for off-period dystonia. Botox injections work by weakening overactive muscles locally at the cellular level. Injections are given about 90 days apart. Other options are DBS, which works via a surgically implanted device to control stimulation of electricity to block electrical pathways in the brain; and pallidotomy, a neurosurgical procedure that destroys nerve cells via focused ultrasound. DBS can be adjusted and stimulation changed; it does not destroy nerve cells whereas focused ultrasound does.

Dr. Walters added that doctors rely on patient descriptions of how and when dyskinesia and dystonia manifest in order to diagnose the cause and recommend the best treatment. (A good reminder to carefully note the symptoms we experience to optimize our doctor visits.)

Levodopa classically causes most dyskinesia. It is also the best medication for treating Parkinson’s disease. Even with the longer-acting, time-released form of levodopa in Rytary, some people experience fluctuations. Anxiety, as we all know, makes dyskinesia worse. Stress, depression, and other emotions all impact the brain, causing the release of hormones (in addition to dopamine) in the body. Sleep can be restorative for dopamine. Dr. Walters said experts still don’t understand why some people get dyskinesia and some don’t.

As the disease progresses and symptoms worsen, higher doses of levodopa medication may be required which provide shorter durations of effectiveness and increased dyskinesia. There is no “window of time” that DBS works, according to Dr. Walters. These fluctuating responses to medication may be a good time to discuss options like DBS or Duodopa pump therapy (carbidopa/levodopa gel delivery through a surgically implanted feeding tube which provides more constant absorption) with your doctor.

Dr. Walters is currently seeing patients at INOVA’s Neurology offices on Wednesdays in Fair Oaks and Thursdays in Gainesville. She also sees patients via telemedicine and will be adding additional days at both offices. You can call 703-845-1500 to make an appointment.

See https://www.inova.org/clinical-trials for information about INOVA Neurology clinical trials.

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