Many people with Parkinson’s disease (PD) use Levodopa, a dopamine-replacement medication, that helps improve quality of life. However, continuous use of levodopa often leads to new movement symptoms called levodopa-induced dyskinesia (LID).

Dyskinesias in Parkinson’s disease are involuntary, erratic movements that can affect different parts of the body. It is estimated that more than 50% of people who take levodopa for PD symptoms develop LID, but the neurological reasons behind this phenomenon are still not well understood.

Jeroen Habets, MD, PhD, a recipient of a Parkinson’s Foundation Postdoctoral Fellowship, seeks to identify brain wave “biomarkers” of LID, highlighting regions of the brain that go awry during LID. Then, his study will use magnetic stimulation therapy to reduce or eliminate LID completely. 

“We are using a noninvasive recording technique to try and understand what happens at the surface of the brain during these periods where patients have dyskinesia,” said Dr. Habets. “We want to better understand what happens when they move involuntarily. We hope to understand better how the whole movement network functions in Parkinson’s disease and specifically this symptom.”

The patterns of neuron activation in the brain used to achieve tasks like movement, memory recall and much more can be observed and measured as brain waves. Different frequencies — the speed and intensity of the patterns — of brain waves are associated with different mental states and activities, such as the slow, calm delta waves of deep sleep or rapid, intense gamma waves of alertness and agitation.

From the lab of Andrea Kühn, MD, at the Charité University Hospital in Berlin, Germany, Dr. Habets uses a machine called a magneto-encephalograph to study participants with PD and visualize the brain wave activity that occurs during bouts of LID. 

By measuring each participant’s brain waves patterns and how they change during LID, Dr. Habets hopes to find regions in the brain that could be a target for treatment. His study will use non-invasive transcranial magnetic stimulation (TMS), which involves using guided magnetic waves to affect brain wave activity. 

Knowing what regions of the brain and which frequencies of brain waves are involved with LID could lead to personalized TMS treatments that alleviate debilitating levodopa side effects.

“During dyskinesia, some processes at the surface of the brain are more active than they should be or than they normally are,” said Dr. Habets. “Previous research showed that if you use magnetic stimulation, which is noninvasive and transmitted through a coil held over the head, you can give magnetic pulses to decrease activity at the surface of the brain and that patients over the hours afterwards developed less dyskinesia.”

Dr. Habets said finding a way to implement this treatment into patients’ daily lives is still a challenge, but researchers need to better understand dyskinesia to solve that problem.

He is hopeful about the potential of this research and grateful for the donors who make research grants like the one he received from the Parkinson’s Foundation possible.

“These donors are giving us time, giving us the opportunity to learn and to develop ourselves,” said Dr. Habets. “I think it has two big effects. There is a direct effect in the science that we do, but it is also growing careers. These funds, especially for young researchers, are very motivating grants to get and inspire us to move forward in our careers.”

 Meet more Parkinson’s researchers! Explore our My PD Stories featuring PD researchers.

For many people with Parkinson’s disease (PD) healthcare appointments with a specialist are often far apart, short on time and packed with information. Learning to be an active member of your care team — prioritizing your concerns, questions and needs before and during every healthcare appointment — can help you optimize the value of each visit.

The following article is based on a Parkinson’s Foundation Wellness Wednesday expert discussion Taking Charge: Strategies for Meaningful Healthcare Visits. Speakers include: Taylor Rush, PhD, health psychologist at Cleveland Clinic, a Parkinson’s Foundation Center of Excellence; Kathleen Blake, MD, MPH, People with Parkinson's Advisory Council vice chair and retired cardiologist; and Muhammad Mahdi Nashatizadeh, MD, neurologist at the University of Kansas School of Medicine, a Parkinson’s Foundation Center of Excellence.

Your Voice Matters

Because no two people experience Parkinson’s the same way, diagnosis and treatment can be complex. Further, accessing expert Parkinson’s care can be difficult. While more than one million people in the U.S. live with PD, research shows that there are less than 700 neurologists trained in movement disorders nationwide. Most of these specialists are concentrated in urban areas, and it can take several months to get an appointment.

Parkinson’s visits can be fast-paced, heavy on information and the gap between appointments can be significant. The priorities you want to cover might be different than those your doctor plans to discuss. It can be frustrating to leave an appointment without talking through your top concerns or fully understanding your doctor’s recommendations. Taking an active approach to your healthcare can address this frustration and help you get more out of each appointment.

Parkinson’s care is a partnership. Your healthcare team brings medical expertise to the relationship while you bring your own expertise — your unique experience living with Parkinson’s and the knowledge of what is most important to your daily life and well-being. You know how Parkinson’s is getting in the way of the things you want or need to do.

“Remember, you are the one going through the process, so you're the expert on what your experience is — your healthcare team relies on you to share what your concerns may be and what the priorities will be,” said Dr. Nashatizadeh.

Active Participation is Key to Empowered Care

Self-advocacy — understanding what you need, gathering information to make good choices and speaking up for yourself — is a skill; one that gets stronger with practice. Research shows people who speak up about their needs and actively participate during their healthcare appointments experience improved outcomes, increased satisfaction and more cost-efficient healthcare.

“Self-advocacy matters because you are the only consistent member of your healthcare team. You are present throughout your journey, not just during the clinical visits but between the visits,” said Dr. Blake, who is living with Parkinson’s.

More Tips for Optimizing Your Care

If you are comfortable including someone, bringing a companion to healthcare visits can be invaluable. Discuss roles before the appointment, so your companion or care partner knows how you prefer them to participate. Participation can help your companion gain a deeper understanding of Parkinson’s. They may also be able to take notes, share unique insights or help you follow through with any recommendations.

While movement symptoms can take center-stage at a PD appointment, Parkinson’s impacts more than movement. Mention any non-movement symptom concerns to your doctor. Anxiety or depression, common in Parkinson’s, can impact your ability to follow through on treatment recommendations. Talk to your neurologist about persistent feelings of sadness or worry.

“Mood should certainly not be discounted or minimized because it's not a motor symptom,” said Dr Rush. “It affects motor symptoms, it affects quality of life, and it affects relationships and functioning.”

Finding the right provider can be a process. If you feel like your healthcare provider isn’t hearing you or addressing your needs, or you leave appointments frustrated, it’s important to take action.

Try addressing your concerns by:

• Expressing your needs and expectations at the beginning of each appointment. Bring a written list of your top three discussion topics or ask your doctor about sending your list through the patient portal ahead of your next visit.

• Having a friend in your corner. Consider asking a companion to support you or to help explain the details of how PD symptoms, challenges or care needs are impacting you.

• Calling the Parkinson’s Foundation Helpline. Our Helpline team can help you prepare ahead of a visit, brainstorm solutions to challenges, or help you explore other care options.

Visit our Making the Most of Your Parkinson’s Care page to discover resources to help you prepare for your next visit.