Dopamine replacement therapies, such as dopamine agonists and the commonly used drug levodopa, can alleviate some of the more debilitating movement symptoms of Parkinson’s disease (PD), restoring precious autonomy and quality of life to those that need it. However, these therapies are not without side effects, one of which is the potential to develop an impulse control disorder. 

Up to 40% of people who take dopamine-replacing drugs for their PD experience impulse control disorders (ICDs). ICDs can present themselves in many ways, including gambling addictions or excessive eating.  

Xiaowen Zhuang, PhD, a recipient of a Parkinson’s Foundation Launch Award, wants to better understand the neuroscience behind this medication-induced impulsivity so that we can improve future treatments to avoid this side effect altogether. 

Dr. Zhuang will study ICD using mice, measuring what is known as delay discounting behavior, which is how much a subject is willing to ignore an immediate smaller award (like treats) and wait for a larger award instead. She uses tools called operant boxes that allow her to train mice on this “small award now vs. larger reward later” scenario and collect data on how their impulsivity changes in different conditions. 

Once the mice are trained, Dr. Zhuang will then utilize a cutting-edge scientific method called optogenetics to turn on or off certain decision-associated neurons in the brain and observe how that affects the mice’s impulsivity. From these experiments, she hopes to home in on the specific parts of the brain connected to ICD and discover how exactly they are affected by PD medications. This knowledge could then guide the development of future treatments where such impulsivity symptoms are no longer a concern. 

Dr. Zhuang’s interest in this topic began once she joined the lab of Alexandra Nelson, MD, PhD, at the University of California, San Francisco, CA, in 2020. 

“Discussions with my mentor, Dr. Nelson, deepened my understanding of the severe complications experienced by Parkinson's disease patients, among which impulse control disorder is a salient one,” Dr. Zhuang said. “These severe consequences intensified my desire to learn new skill sets to dissect the circuit mechanisms.” 

Shortly after joining, the COVID-19 pandemic forced all researchers away from labs and into their homes. But this didn’t stop Dr. Zhuang’s scientific enthusiasm.  

“While she had little coding experience or familiarity with operant behavior prior to joining my lab, with only modest guidance and the loan of a power drill and soldering iron, she built custom operant boxes at home, wrote code to run them, and developed a plan for progressive training and testing with a delay discounting task,” said Dr. Nelson. “She tested her boxes over Zoom, using a fuzzy mouse toy to trigger nose pokes.” 

Back in the lab and ready to begin her Foundation-supported research, Dr. Zhuang is excited about how her research may improve the lives of those relying on PD medicine.  

“Despite its prevalence, our understanding of ICD’s cause is limited, and effective treatments or interventions are yet to be discovered,” she said. “My research could pave the way for new treatments for Parkinson's disease that help manage symptoms more effectively without leading to these impulse control issues.” 

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

Deep brain stimulation (DBS) is a surgical treatment that provides relief to people with Parkinson's disease (PD) who experience movement symptoms and medication side effects. Since its U.S. Food and Drug Administration (FDA) approval to treat PD symptoms in 2002, DBS can help reduce medication needs and stabilize symptoms. PD symptom severity often varies throughout the day — because DBS provides constant electrical stimulation, there can be times when it is too much or too little, which limits its effectiveness. 

A recent study has developed a new approach, known as adaptive DBS, which has the potential to further personalize DBS treatment for Parkinson's. It was recently tested in a small clinical trial reported in Nature Medicine. 

Utilizing custom computer algorithms and artificial intelligence (AI), adaptive DBS can detect symptom changes in real time by monitoring brain activity that is specific to each participant. When it detects changes, the system delivers precisely calibrated electrical pulses to counteract these shifts. 

The system delivers more electrical stimulation during periods of stiffness (bradykinesia) and less during phases of involuntary movement (dyskinesia). It also adjusts stimulation based on the effectiveness of levodopa medication, providing more stimulation when the medication wears off and less when it's active.  

About the Study & Results

The clinical trial enrolled four participants who were diagnosed with Parkinson’s at least six years earlier. Each participant underwent conventional DBS surgery. Researchers collected brain activity data for each participant, then used that data to create personalized algorithms to detect and respond to symptom fluctuations. Months after the initial DBS surgery, each participant was switched to adaptive DBS. 

To compare the two types of DBS, participants switched between conventional stimulation and the personalized version every two to seven days over a period of two months (one month spent with each stimulation type). Neither the participants nor most of the researchers knew which type of stimulation was being delivered at any time. Participants reported their symptoms daily, and wearable monitors detected changes in their movement symptoms. 

All four participants experienced nearly a 50% reduction in time spent with their most troublesome symptom when adaptive DBS was active compared to conventional stimulation. They reported that their worst symptoms went from persisting for about 25% of their day down to about 12%. Additionally, adaptive DBS did not worsen other PD-related symptoms. Overall, participants reported an improved quality of life with adaptive DBS.  

By dynamically adjusting stimulation parameters based on real-time brain signals, adaptive DBS appears to offer a more personalized and effective treatment for Parkinson's than conventional DBS. 

Highlights 

• A clinical trial enrolled four participants to test a surgical treatment called adaptive DBS that detects and responds to brain activity to provide individualized and customized stimulation to help with Parkinson’s symptoms. 

• All four participants experienced a nearly 50% reduction in time spent with their most troublesome symptom when adaptive DBS was active. 

• Adaptive DBS did not worsen other PD-related symptoms. 

• Participants reported improved quality of life with adaptive DBS compared to conventional DBS. 

What does this mean? 

Adaptive DBS may be an evolved version of DBS treatment for improving movement symptoms of Parkinson’s. The study finds that using new technology can further personalize DBS currents and make DBS even more effective in treating troublesome PD symptoms. However, developing the customized algorithms for each participant was time consuming in this small study, and it will take time before it becomes widely available. 

What do these findings mean to the people with PD right now? 

It’s important to keep in mind that this was a small study of only four participants. The study, and its technology will need to be replicated on a much larger scale. Still, the study findings are exciting and bring hope for the PD community, as proven by its media coverage. The concept of adaptive DBS may eventually become the standard for DBS treatment, and with further development and refinement, people with conventional DBS may be able to use adaptive DBS in the future.  

Adaptive DBS is still in testing and it does not have widespread availability. People should talk to their doctors about their treatment options and if they have DBS, ask doctors or their care team to inform them if a similar adaptive DBS study begins to recruit.  

Learn More 

The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Learn more about PD and the topics in this article through our below resources, or by calling our free Helpline at 1-800-4PD-INFO (1-800-473-4636) for answers to your Parkinson’s questions. 

• Non-pharmaceutical Treatments for PD: DBS and Focused Ultrasound 

• Surgical Options: A Treatment Guide to Parkinson's   

Every year thousands of Parkinson’s disease (PD) experts and researchers share research findings that have the potential to help people living with Parkinson’s at the International Congress of Parkinson’s Disease and Movement Disorders. This year the conference took place from September 27 to October 1 in Philadelphia, PA.  

The Parkinson’s Foundations shared five new Parkinson’s studies, revealing new information about genetics research, care and our work with the Black and African American community. These findings offer new hope for people living with PD and caregivers alike.  

Explore the five research findings the Parkinson’s Foundation shared with the international PD community below:   

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1. Expanding the PD Generation Study to Increase Clinical Genetic Testing and Counseling Using Whole Genome Sequencing Among Diverse Parkinson’s Populations 

PD GENEration: Mapping the Future of Parkinson’s disease is a Parkinson’s Foundation research study that offers genetic testing and counseling, in English and Spanish, to people with Parkinson’s through a whole genome sequencing platform. This study aims to simplify access to clinical genetic testing to people with PD and offer educational materials to clinicians on PD genetics. 

Key Takeaways: 

• The study has enrolled 18,003 participants, as of September 2024. 

• The study has expanded to five countries from Latin America (Colombia, Chile, Peru, Mexico, Ecuador), Israel, Canada, and 10 additional sites in the U.S. that focus on underrepresented populations. 

• 12.2% of people with Parkinson’s, who have completed testing, tested positive on the PD GENEration 7-gene panel. 

• By providing genetic testing to all those interested and from all backgrounds, the study helps inform care, diversify the data, help engage people in research, and qualify more for enrollment in clinical trials for PD. 

PD GENEration goals include helping accelerate clinical trials in PD, improving PD care and research and empowering people with PD and their care teams. 

Learn more & enroll in PD GENEration.

2. Engagement of the Black and African American Community in PD Genetics Research 

Advancements in understanding the biological pathways of Parkinson’s have largely been focused on people of European ancestry. There is a critical need to understand genetic differences across populations, including people with African ancestry. The Parkinson’s Foundation partnered with Morehouse School of Medicine, a historically Black institution of medicine to improve inclusion in PD GENEration, prioritize PD awareness, education and resources; and tailor our research advocacy training program — the Learning Institute.   

Key Takeaways: 

• Through this partnership with Morehouse School of Medicine, from November 2021 to March 2024, 157 Black and African American participants enrolled in PD GENEration.  

• 14 community education events were held, including the Learning Institute in September 2023. 

• Media was developed and utilized to expand reach and included two webinars, five podcasts and six blogs/news articles.  

Establishing partnerships with trusted sources of the Black community is critical to providing equitable access to PD education and resources, including PD GENEration. Focusing on diversity and inclusion in PD GENEration will accelerate breakthroughs towards a cure for PD.     

Learn more about our impactful partnership with Morehouse. 

3. Benefits of Parkinson’s Team Training Are Maintained Long-term 

The goal of Parkinson’s Foundation Team Training is to provide more coordinated and complete patient-centered care to improve the quality of life of people with PD and caregivers. Our study aimed to demonstrate the effectiveness of the training program and determine if the benefits of Team Training are maintained long-term. 

Key Takeaways: 

• Through Team Training, team members become more effective in delivering better interprofessional, patient-centered care.  

• Results showed significant and sustained improvements in: 

• Healthcare professional confidence in various measures of providing care 

• Team coordination working with persons with PD and their care partners 

• Understanding of the other team member roles and how team members can assist in the care of persons with PD and their care partners. 

• The effectiveness of the Team Training program’s education is maintained and sustained long term. Better care leads to better lives for those living with PD and their care partners. 

Parkinson’s Foundation Team Training provides a continuing education program for healthcare professionals to learn more about PD and how to develop and maintain an effective PD interprofessional team.  

Explore our Learning Lab courses, designed for healthcare professionals.  

4. Engage, Educate and Empower: Parkinson’s Research Advocates from the Black and African American Community  

Black and African American people with Parkinson's face significant disparities in care, including delays in diagnosis and treatment, limited access to care and historical exclusion from research. To address these challenges, the Parkinson’s Foundation Research Advocacy Training program, the Learning Institute, was tailored to engage, educate, and empower the Black community in Parkinson’s research. 

Key Takeaways: 

• The Learning Institute was held in September 2023. 33 people from the Black community were trained in research advocacy.  

• Many research advocates felt prepared to begin research advocacy (79%) and most felt excited about the work they can do as a research advocate (83%). 

• To date, 17 advocacy tasks were completed by 26 research advocates, including presentations at local churches and health fairs, panelists at a Parkinson’s Foundation community-based program, and partnerships with researchers.  

The Learning Institute empowered African Americans living with PD to become advocates for community outreach and engagement. This program has the potential to drive meaningful change, enhance health equity, and improve outcomes for those living with PD in the Black and African American community. 

Learn more about our research advocates. 

5. Hospital Care Learning Collaborative: Sharing Strategies to address the Parkinson’s Foundation Inpatient Clinical Care Standards 

With the launch of the Parkinson’s Foundation Hospital Care Learning Collaborative, the Foundation in partnership with healthcare leaders, clinicians and institutions, aims to eliminate preventable harm and promote higher reliability in care for people with Parkinson’s in the hospital. The Learning Collaborative work to implement quality improvement projects focused on improving hospital safety for people with PD. Participants shared strategies and best practices to address the hospital care standards, as outlined in the Parkinson’s Foundation Hospital Care Recommendations.  

Key Takeaways: 

• A framework to work with the hospital IT team to request adjustments to the Electronic Health Record, including the ability to customize times for Parkinson’s medication orders. 

• Strategies to avoid medication delays in the event of safety concerns due to swallowing challenges (dysphagia), including the use of crushed Parkinson’s medication and an automated trigger for a Speech Language Pathologist evaluation.  

• The use of an Electronic Health Record alert when unsafe medications are ordered, offering alternatives that are already approved by the hospital Pharmaceutical & Therapeutics committee. 

The Parkinson’s Foundation is committed to improving hospital safety for people with PD. In addition to our Hospital Safety Guide, a resource for people with Parkinson's and care partners, the Foundation works with hospitals and health systems to help promote awareness and delivery of the best care for the Parkinson’s community.  

Read and download the Hospital Safety Guide today. 

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Stay up to date with Parkinson’s Foundation through our Parkinson’s Today blog.