Home » Neurological Disorders » Living With Dyskinesia, Off Time, and Social Anxiety

People battling Parkinson’s disease often deal with side effects like dyskinesia — and the embarrassment they can cause.

Parkinson’s disease (PD), a progressive disorder of the nervous system affecting movement, affects nearly a million people in the United States alone. While medications can effectively manage symptoms, some of their side effects can be difficult to manage in and of themselves.

“In Parkinson’s disease, dyskinesias — involuntary, purposeless, non-rhythmic, dance-like or jerky movements — are a result of taking the most common Parkinson’s medication, levodopa,” explains Duarte Machado, M.D., co-director of Hartford Healthcare Movement Disorders Center in Cheshire, Connecticut.

Dyskinesia’s impact

This type of dyskinesia, known as levodopa‐induced dyskinesias (LID) is often confused with the tremors associated with Parkinson’s, but the latter is a symptom of the disease while the former is a side effect of the medication. “Dyskinesias are characterized by movements that are non-rhythmic, purposeless, and unpredictable,” Dr. Machado says. “Tremor is a rhythmic movement caused by the rapid alternating contraction and relaxation of muscles.”

It’s estimated that as much as 80 percent of PD patients have some level of LID, and Dr. Machado stresses that dyskinesia is far more than an irritation. “Dyskinesia has been found to worsen the negative impact PD has on a patient’s quality of life, significantly worsen daily functioning, and cause social stigma. Dyskinesias are also associated with an increased risk of falls and healthcare costs.” Dyskinesia often also causes stress and social anxiety for Parkinson’s patients; in a study conducted by The Parkinson Alliance in 2019, 47 percent of PD patients reported experiencing anxiety in social situations due to their dyskinesia, with 28 percent characterizing that anxiety as moderate to severe.

“Off” time

Most patients experience dyskinesia during what’s called the “on” period — the time when the medication’s presence in the body and its effects are high. When the medication begins to wear off, the patient enters into what’s called an “off” time — and while this may result in a reduction in dyskinesia, it can also mean a return of Parkinson’s symptoms. As a result, many patients find themselves forced to choose between two different experiences.

Dr. Machado encourages PD patients to discuss their dyskinesia and off time openly with their caregivers and doctors. “A person should discuss whether he or she has ‛jerking or twisting movements’ occurring when his or her Parkinson’s disease medications are working,” he advises, “and also track how often off time is experienced. This can be done by keeping a symptom diary, for example.”

How to help

It is important for caregivers and loved ones to encourage PD patients not to ignore dyskinesia out of embarrassment. “Caregivers and loved ones should bring dyskinesias to the attention of the PD patient and his or her doctor,” Dr. Machado advises. When it comes to both the physical manifestation of dyskinesia and the social anxiety it can cause, Machado believes they share a solution.

“The main strategy for managing dyskinesia in patients with PD is to use an orally administered, high-dose, extended-release formulation of amantadine specifically approved for the treatment of dyskinesia in patients with PD receiving levodopa-based therapy,” he says. “This is also the best way to reduce the social awkwardness and embarrassment, as this medication reduces total daily off time and troublesome dyskinesia, resulting in an increase in total daily on time without dyskinesia (also known as good on time).”

Alternative strategies for PD patients include speaking to their doctor about fractionating their levodopa dose, lowering the overall dose of dopaminergic agents, and possibly adding a longer-acting dopamine agonist. It’s important to realize that these all have the potential to worsen dyskinesia or “off” time.

Caregivers and patients must be sure to talk to their doctors about dyskinesia and off time. The most powerful tool for people living with Parkinson’s disease is hope; having a way to minimize or eliminate dyskinesias frees people up to focus on the truly important thing: living well.

This piece has been reviewed by Duarte Machado, M.D.

Next article