My PD Story

Karen Rosenbaum posing in front of a field of flowers
People with PD

Karen Rosenbaum

My name is Karen, I am 58 years old, and I was diagnosed Parkinson’s disease (PD) in 2019, right before the global Covid-19 pandemic. At the point of my diagnosis, I was experiencing advanced symptoms that were previously masked by a busy life of motherhood and exercise. I attributed many of my symptoms, such as back stiffness and shaking, to overtraining, excessive caffeine and stress. I never thought an active person like me might develop Parkinson’s. 

Upon my diagnosis, I connected with a wonderful neurologist who determined that my Parkinson’s was caused by genetics. Unfortunately, over the course of several months, I began to experience severe symptoms of dystonia (repetitive muscle twisting, spasm or cramp), falling and stiffness on the left side of my body. My Parkinson’s medications help, but to this day, I still experience severe symptoms, which can be troubling to my loved ones as my medication wears off.  

As a result of Parkinson’s disease, I have found myself in many Emergency Room (ER) situations. I am a “clock watcher” when it comes to taking my medications on time, meaning that I take them frequently, every day, at the same exact time. Dystonia and stiffness hit me with a deep and painful heaviness, which is why I must stick to a strict medication schedule.  

Last fall, my neurologist believed I was a good candidate for a new extended-release Parkinson’s medication to alleviate my worst symptoms, which I eagerly agreed to try. After taking it for the first time, I quickly realized something was not right — my throat began to close due to severe dystonia, and my speech became increasingly slurred.  

I called my neighbor for help, and they quickly called an ambulance to transport me to the ER. I brought all my old Parkinson’s medications and everything else I might need for a hospital stay. I was having a bad reaction to the new medication.  

Unfortunately, things became a fiasco when the ER did not give me my medication on time. I was admitted to the hospital for observation overnight due to low blood pressure, and the medical team refused to give me my Parkinson’s medications.  

Between the ER and Admitting, hospital error of staff and pharmacy miscommunicated my list of medications in their computer system. I had clearly provided them a list of my medications and the schedule, yet they did not enter them into their computer system correctly. The inpatient nurse locked my medications from home in a drawer. It took me multiple attempts and worsening symptoms to convince the medical team to administer my medications.  

Many medication doses were missed and then given delayed 12 hours. When I finally left the hospital, my symptoms were significantly worse than before my hospital stay. Months later, I am still recovering.  

I share my story not to frighten anyone, but to encourage people with Parkinson’s and their loved ones to advocate for themselves while in the hospital. Medical teams are not always educated on the PD or Parkinson’s medications timing and care, and this can be a scary reality when you are alone.  

Lack of awareness in the hospital setting exists for how Parkinson’s presents itself in younger people. My story is an example of not judging a book by its cover. The Parkinson’s Foundation Hospital Safety Guide is designed to equip you for your next hospital stay. 

Advocate for your best care with the Hospital Safety Guide. Learn more and download the guide now

Advancing Research

How Our Genetics Study Evolved in One Year: More Access & New Parkinson’s Insights

Group of four PF staff posing for a picture

In 2024, the Parkinson’s Foundation expanded its global genetics study, PD GENEration: Mapping the Future of Parkinson’s Disease, both geographically and biologically. The study team’s recruitment efforts led to an increase in the diversity of participants. Changes to sample collection and genetic sequencing allowed for the inclusion of more than 30 new genetic markers of interest. The results from three of these scope-expanding initiatives were presented as posters at international Parkinson’s and medical conferences. Below we highlight each poster.  

View All Posters

Providing Genetics Testing and Counseling on a Global Scale 

Since 2019, PD GENEration has aimed to make genetic testing accessible to every person living with Parkinson’s disease (PD) — providing genetic results and counseling to people with PD at no cost.  

With this data, researchers are already uncovering new insights into the disease, such as how approximately 13% of people with PD have a genetic variant — greater than the previous scientific estimates of 5-10%. This means more people with PD may be eligible for clinical trials once they know their genetic link to PD. We are contributing significantly to a large and diverse global genetics registry for Parkinson’s disease, a critical need for scientists to discover new information about the role of genetics in disease and ultimately novel or more tailored treatments. 

1. Bringing PD Genetic Testing to Latin America with LARGE-PD 

For large-scale studies that provide genetic sequencing and counseling like PD GENEration, participant diversity is essential. Having genetic data from people across the world creates a strong foundation for impactful research breakthroughs. With that in mind, the Parkinson’s Foundation partnered with the Latin America Research consortium on the Genetics of Parkinson’s Disease (LARGE-PD) to expand the PD GENEration study to new countries. In just a few months, we have provided valuable genetic testing and counseling to new, underserved populations, broadening our understanding of the disease.  Six LARGE-PD sites offer the PD GENEration study today. The six selected sites are in Colombia, Chile, Peru, Mexico, El Salvador and the Dominican Republic, supporting a wide range of Latin American communities. Every PD GENEratrion site offers high-quality testing and genetic counseling. 

These sites enrolled 446 new participants and trained 16 clinicians to return genetic testing results — maintaining PD GENEration's momentum into the new year. This LARGE-PD collaboration and these six new Latin American sites support PD GENEration’s goals of accelerating clinical trials in PD, improving PD care and research and empowering people with PD and their care teams. 

2. Building Trusted Connections with the Hawaii PD Community 

PD GENEration recruitment in Hawaiʻi began in 2022, but participation was limited to at-home testing with only a few people signing up each month. With help from the Hawaiʻi Parkinson Association (HPA), a local partner since 2018, the Parkinson’s Foundation worked with The Queen’s Medical Center in Honolulu as Hawaii’s first PD GENEration site in 2023, which is also a Parkinson’s Foundation Comprehensive Care Center. This location immediately accelerated participation with an increased average of nearly 20 new people joining the study every month.  

Rock Steady Boxing PF event

As sign-ups increased, we learned new insights into the Hawaii PD community. In particular their historical mistrust of the medical field and hesitance toward sharing personal health information due to western colonization. Leading with empathy and understanding of this historical trauma, the PD GENEration outreach team worked closely with local organizers to drive an outreach campaign in hopes of breaking down barriers to inspire joining PD GENEration.  

In October 2024, PD GENEration team members met with Rock Steady Boxing members at the HPA Resource Center, two pillars of the Honolulu PD community. These introductions provided information about the PD GENEration study, including its history, rationale and impact, as well invitations to the upcoming Parkinson’s Foundation Research and Care Event. At this event, attendees learned about what's new in research, how research shapes treatments, and care tips for managing PD symptoms

These outreach efforts helped: 

  • 30 new people with PD join PD GENEration, over half of whom were from diverse (non-white) populations and 90% had never participated in PD research before.  

  • This amounted to a nearly 13% jump in total Hawaii resident enrollment.  

As this momentum continues, PD GENEration and the entire PD research field will gain valuable genetic information from this unique community while the Hawaii participants gain key insights into their diagnoses and personal health. 

3. Diving Deeper into Genetic Testing with the Tasso+ Device 

Accessibility is key for the PD GENEration study. The ability for people with PD to participate either in person at a medical or through an at-home mail-in test has ensured that anyone interested can participate. This accessibility was top-of-mind when the study entered its next phase in March 2024, expanding its genetic testing panel from the nine major PD-related genetic mutations to 40 targets, adding 21 genes with a potential PD connection.  

Participants can now request testing for 10 CDC Tier 1 genes related to other diseases like breast cancer, ovarian cancer, Lynch syndrome, and familial hypercholesterolemia (high cholesterol).

To investigate this wider range of genes in a single test, the format would have to change. While the amount of quality DNA obtained from a cheek swab is sufficient when testing for just a few PD gene mutations, a blood sample is needed for collecting enough testable DNA for the new gene panel. This change is simple for study sites, but the PD GENEration team worked to find a new way to offer at-home testing for the new panel.  

In February 2024, PD GENEration partnered with the company Tasso to produce the study's new blood sample collection kit, called Tasso+. Learn more in this video. In just a few months, the new Tasso+ kit was fully integrated into at-home testing. As of November 2024, more than 1,000 new PD GENEration participants have enrolled using the Tasso+ device with a 97.1% kit success rate. 

With the Tasso+ kit, PD GENEration can now collect and provide even more valuable genetic information to PD researchers, potentially unlocking more clues behind disease progression that can lead to improvements in treatment and care for people with Parkinson’s everywhere. 

View All Posters  

Learn more about PD GENEration and enroll today.

Raise Awareness

What People with Parkinson’s Want Health Professionals to Understand

Woman talking to a doctor

Finding care for Parkinson’s disease (PD) can be difficult due to a shortage in specialized care, especially for those who live in rural areas. There are one million Americans living with Parkinson’s and only 660 movement disorder specialists currently practicing in the U.S.  

With limited access to movement disorders specialists, most people with PD find themselves visiting a general neurologist or primary healthcare provider for their Parkinson’s care. However, across all care settings, people with PD report feeling their healthcare providers may not fully grasp the intricacies and daily challenges that come with Parkinson’s.   
 
The Parkinson’s Foundation is dedicated to educating and training our professionals about best practices in quality PD care. Yet, nobody understands the daily challenges of living with Parkinson’s better than those living with it.  

We asked people with Parkinson’s on our social media channels what they wish health professionals understood about living with PD. This is what they said: 

“I wish doctors would be more understanding that Parkinson's also affects their ability to process things sometimes. My dad would appear to be ‘thinking' about what the doctors said, but he was really struggling to understand what exactly was being said.” - Dawn    

Some people with PD experience cognitive impairment that results in slowness of memory and thinking. Symptoms of cognitive impairment may not always be noticeable. However, this can influence the way people with PD understand information and may leave them feeling confused or overwhelmed. 

“I wish they understood there are a lot of non-motor symptoms — hypotension, constipation, mood disorders, cognitive issues, etc. These need to be considered and monitored during regular appointments as well as those with their movement disorder specialists.” - Deanna 

While non-movement symptoms are invisible, it's important to realize that they are common and many people with Parkinson’s find them more troublesome and disabling than movement symptoms

“Healthcare professionals need to address mental health issues that can be caused by Parkinson’s itself.” -Leann 

Mental health changes, like depression, anxiety and apathy are part of Parkinson's itself, resulting from PD-related changes in brain chemistry. Treating these symptoms is one of the most significant ways to improve quality of life for people living with Parkinson’s.  

“This disease is very complex, not just a movement disorder. It affects your brain, your confidence, your sense of self, and there are day-to-day changes.”  -Michele 

Finding a mental health counselor is a step towards bettering your mental health and wellbeing. The counselor you partner with should make you feel safe and validated while helping you navigate life with PD.  

“They should combine medical care with social worker care. Don't tell someone their life is about to radically change but provide nowhere to start or available services.” -Lee 

Building a care team that is well-versed in PD will help guide you and improve your quality of life. People living with Parkinson's benefit most from a comprehensive, team-based healthcare approach. The Parkinson's Foundation promotes an allied health team approach across our Global Care Network.  

“I wish they would believe patients and their caretakers when they mention symptoms or other issues.” -Lindsey 

A 2022 poll from Mitre-Harris found that 52% of individuals in the U.S. feel their symptoms are “ignored, dismissed, or not believed” when seeking medical treatment. That number rises to 60% within the Hispanic community.    

“They need to know the importance of taking medication at the right time when in the hospital. It was a nightmare trying to ensure that my mother got her medications on time.” - Roisin 

People with Parkinson’s need to take their medication at the same time daily to avoid “off times,” periods of time when the effect of levodopa medication wears off, causing a return of motor or non-motor symptoms. This is especially important for healthcare providers in hospitals to recognize, as they are more likely to be distributing daily medication. Our Hospital Safety Guide is designed to help people with PD and their care partners advocate for high-quality care in the hospital. 

Download Free Resources

The Hospital Safety Guide is filled with useful tools and information to help a person with Parkinson’s during their next hospital visit, planned or unplanned. Print these resources when you have used the copies within your guide, or share additional copies with care partners and loved ones.

“In general, healthcare professionals should understand more about the signs which indicate someone has Parkinson’s. Internists, even neurologists often miss the signs. We need better education for a heightened awareness of the many early symptoms of PD. Not everyone shows up with tremor.” -Donna 

Learn how to recognize ten early signs of Parkinson’s in this fact sheet

“Refer early for speech and swallowing changes!” -Julia 

Addressing Parkinson’s symptoms early, such as speech and swallowing changes, is extremely important. Without intervention, swallowing difficulties can be especially dangerous.  

“We are all very different, and whatever they learned in a book or heard from their last patient may not apply to me. Everything we tell our doctors pales in comparison to what we go through most days. We aren’t liars or exaggerating; we need a little relief.” -Esther 

All people with PD deserve to receive proper care. Our PD stories allow people to share their stories and advocate for themselves. You can share your story here

For Health Professionals 

The Parkinson’s Foundation is here to help health professionals provide quality Parkinson’s care to their patients living with this disease. Explore our many resources for health professionals, including accredited online courses. Visit Parkinson.org/Care to learn more about our care priorities and programs.   

If you or a loved one is looking for Parkinson’s expert referrals, contact our Helpline at 1-800-4PD-INFO (1-800-473-4636). 

Raise Awareness

Empowering Black and African American Communities with Parkinson’s: Education and Advocacy in Action

Large group of people posing for a picture.

Black and African American people living with Parkinson’s disease (PD) often face significant health disparities, limiting access care. To bridge this gap, the Parkinson’s Foundation launched Parkinson’s Journey in Color: Advancing Research and Care in Your Community — events tailored to meet the unique needs and experiences of local Black and African American PD communities. Each event offered in-person genetic testing at no cost through the Foundation’s landmark genetics study, PD GENEration: Mapping the Future of Parkinson’s Disease.  

Five Women posing for a picture

A Collaborative Approach Rooted in Community 

Part of our mission is to amplify the voices of those living with Parkinson’s. Parkinson’s Journey in Color was designed through a collaboration with Parkinson’s Foundation research advocates and staff. Research advocates are volunteers who complete Parkinson’s Foundation training to help ensure PD research is more efficient and effective. 

When it came to Parkinson’s Journey in Color, research advocates helped guide every aspect of the events — from shaping topics to selecting central location. They also identified and worked with community partners to promote and participate in the events, ensuring that the program resonated with local audiences. 

“Working alongside advocates who are all people in the PD community, we recognized their unparalleled understanding of their communities and cultural values, allowing us to create an inclusive and empowering event that reaches more people with Parkinson’s,” said Evelyn Stevens, Parkinson's Foundation senior director of community engagement.  

The research advocates who helped shape these events were trained in collaboration with Morehouse School of Medicine in September 2023 (learn more in this article). These advocates, who are people living with Parkinson’s and care partners who identify as Black or African American, brought their experiences, insights and cultural expertise to the forefront of Parkinson’s Journey in Color events. 

Women speaking to an audience at event

Tailored Programming to Address Community Needs 

The Parkinson’s Foundation hosted three Parkinson’s Journey in Color events in 2024.  

  1. Atlanta, GA: Our March 9 event was held alongside Morehouse School of Medicine and Emory Brain Health Center. Fifty-five people attended, with most saying it was their first Parkinson’s Foundation event. Ten people completed PD GENEration testing at the event. 

  2. Charlotte, NC: Our September 14 event hosted 51 attendees and was held at The Park Church, a recommendation by a research advocate that allowed the Foundation to strengthen its connections with faith-based leaders and trusted sources within the Black and African American community. Attendees shared their experiences with participating in research, including PD GENEration. The event featured a “Connections to Care” table that provided resources for local neurologists and an opportunity to meet with local healthcare professionals experienced in PD.  

  3. Chicago, IL: Our November 16 event hosted 45 attendees and was held at the University of Illinois Chicago. Part of its focus was on research and care, with four PD GENEration sites in attendance that provided attendees with information and resources for care and PD GENEration testing. Participants also had the opportunity to meet with movement disorders specialists from Northwestern University, Rush University (both Parkinson’s Foundation Centers of Excellence) alongside University of Chicago and University of Illinois at Chicago.  

“Each of our journeys are quite colorful. In Charlotte, one of our church leaders shared with me, ‘who knew so many African American people have a PD diagnosis?’ I shared there are more as well. That's what this advocacy is all about,” said Lisa Fletcher, a care partner and the Parkinson’s Foundation research advocate who suggested partnering with a local church.  

Large group of people having fun at an event

Openly Discussing Critical Parkinson’s Topics 

While each event featured a customized list of topics, all shared essential PD information including:  

  • Parkinson’s Disease 101: A session led by a movement disorders specialist (a neurologist experienced in PD) who reflected the community’s identity, fostering relatability and trust. 

  • The Importance of Research: A candid discussion that acknowledged the historical mistreatment of the Black and African American community in research while highlighting progress and current safeguards to rebuild trust. 

  • Introduction to PD GENEration: Information on genetic testing and counseling opportunities to empower participants with knowledge and tools for proactive care. 

  • Lived Experience Sharing: Stories and insights from local people living with Parkinson’s and their care partners, providing inspiration and a sense of shared understanding. 

The Black Community & Parkinson’s  

Group of people speaking at an event

Black and African American people diagnosed with Parkinson’s have unique experiences and needs when it comes to living with PD. Research shows that Black people with PD are diagnosed at a later disease stage than white people. 

Research also shows that Black people are less likely to be diagnosed compared to other racial and ethnic groups. This is in large part due to Black communities being historically excluded in the healthcare system and research studies. Because of this, the full impact of the disease within the community is still unknown. 

The Parkinson’s Foundation works to bring awareness to these disparities and more so we can make health care more accessible across the PD community, through reaching and supporting populations of focus, including those who identify as Black and African American. Explore our resources and information that can help you find a specialist, build a care team and find local resources, like support groups and exercise classes. 

Learn More 

Building a Stronger Future Together 

“Parkinson’s Journey in Color represents more than just an education and care event— it is a testament to the power of community-driven solutions and advocacy,” said Evelyn. “Through centering the voices of Black and African American individuals living with Parkinson’s, we are fostering a more inclusive and equitable approach to care, research and support.” 

Through initiatives like this and designing new ones that reach more populations of focus, the Parkinson’s Foundation aims to build stronger connections within local communities, address disparities in care and empower individuals with the knowledge and resources they need to thrive.  

Find ways to get involved with the Parkinson’s community that works for you — from attending local Parkinson’s Foundation events to joining a research study.   

Advancing Research

Meet a Researcher Studying How Boosting Immune Cells Could Lead to a Preventative Parkinson’s Therapy

Meet Rebecca Wallings, PhD

Immune cells are vital to protect our bodies from infection and disease. But what happens as they become less effective with age? 

Rebecca Wallings, PhD, is leveraging her Parkinson’s Foundation Launch Award to investigate how aging impairs a type of immune cell outside the brain — and how this impairment impacts the development of Parkinson’s disease (PD). Dr. Wallings is focused on the peripheral immune system (immune cells outside the brain), which researchers suspect plays a part in Parkinson’s.  

“My research is focused on how an aging immune system contributes to Parkinson’s,” said Dr. Wallings. “As you age, your immune system ages with you. Your immune cells can become exhausted, not working as well as they used to. They are very slow, sluggish and not able to resolve inflammation like they used to. We think it is that accumulation of exhausted immune cells that are potentially driving degeneration in the brain.” 

Parkinson’s research has established that inflammation plays a part in PD. However, it has only been in the last 10 years or so that researchers have started to determine that inflammation is not just a byproduct of Parkinson’s, but a contributor to the disease. 

“For the longest time the field thought that inflammation in Parkinson’s was something that was rampant, that there was too much of it,” Dr. Wallings said. “It was something that needed to be decreased to alleviate symptoms. But my research has shown that the complete opposite might be happening. Instead of dampening an already suppressed immune system, we should try to rejuvenate it to make it work more efficiently.” 

In her research, Dr. Wallings aims to deal with the underlying mechanism that makes immune cells exhausted — mitochondrial dysfunction. Her data suggests that people with certain genetic mutations that cause Parkinson’s have mitochondria that do not work as efficiently as their immune cells age, which causes the cells’ exhaustion.  

In her lab, she is testing if reinforcing or repairing these immune cell mitochondria could have potential to serve as a future preventative treatment option for PD. 

By receiving the Launch Award, Dr. Wallings can take her research further and establish independence in the field. She hopes to run her own lab focused on her immune cells study and their role in PD and feels that this award will greatly assist her transition. 

“My research is at the forefront of a potential paradigm shift in the neurodegeneration field and may change the way researchers think about the role of the immune system in PD,” Dr. Wallings said. “What the Parkinson’s Foundation has done with this award is show me that they are willing to invest in me, and they believe in the potential impact my research may have on the field and, most importantly, on patients’ lives.”  

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

Science News

Update: New Study Finds Drugs like Ozempic Ineffective for Parkinson’s Treatment

Science News Blog header

Update: February 21, 2025

This February, a new study published in the medical journal The Lancet has cast substantial doubt on the potential effectiveness of the diabetes drug class GLP-1 receptor agonists on treating Parkinson’s disease (PD).

A phase 3 clinical trial evaluated the GLP-1 receptor agonist called Exenatide. The study,  consisting of 194 participants followed over two years, found that daily use of Exenatide did not provide any significant improvement for Parkinson’s symptoms compared to the placebo. This lack of improvement was consistent across age groups, sexes and PD stages. The researchers also performed pre- and post-study CT brain scans on select participants, finding that Exenatide did not impact dopamine activity in the PD-relevant regions of the brain.

These results suggest that the current GLP-1 receptor agonists medications are not effective as Parkinson’s disease-modifying treatments. As scientists learn more about the GLP-1 biological pathway and how it affects dopaminergic neuron health, there will likely be future development and trials of new GLP-1 drugs specifically designed for Parkinson’s.

January Article

Parkinson's disease is a neurodegenerative disorder where dopamine-producing cells in the brain slowly break down over time. This loss of dopamine leads to a variety of movement symptoms, including tremors, stiffness, slow movement and difficulty with balance. While current treatments can help manage many PD symptoms, they do not address what causes the disease and therefore cannot prevent its progression.  

Emerging research suggests a potential link between the brain's decreased sensitivity to the hormone insulin and the progression of Parkinson's. This observation has prompted researchers to investigate whether anti-diabetic medications that help manage insulin levels could potentially slow the progression of Parkinson's. 

Person holding ozempic injection pen

Trending drugs Ozempic and Wegovy belong to a class of diabetes medications called GLP-1 receptor agonists, which along with certain other diabetes medications have shown potential in reducing the risk of developing Parkinson’s in people with diabetes. These drugs mimic the action of a natural hormone that regulates blood sugar levels. 

However, it is not known whether GLP-1 receptor agonists drugs may benefit people with Parkinson’s who don’t have diabetes. 

A recent clinical trial, published in the New England Journal of Medicine, tested whether a GLP-1 agonist called lixisenatide could be a new treatment approach for people in the early stages of Parkinson's. The study showed that lixisenatide, which was approved by the FDA to help diabetics control blood sugar in 2016, helped movement symptoms in people with PD and may slow the progression of Parkinson’s.  

As part of this study, a mouse model of Parkinson's demonstrated that lixisenatide improved movement issues and preserved brain cells, suggesting GLP-1 agonists may treat the underlying causes of PD.  

Additionally, lixisenatide is not the only GLP-1 receptor agonist with potential therapeutic applications for Parkinson's — at least six other similar medications are currently being evaluated as a potential PD treatment. However, compared with liraglutide and semaglutide (such as Wegovy), lixisenatide appears to be more effective in crossing the blood brain barrier. 

Study Results

The new study — a phase 2 clinical trial — enrolled 156 people with Parkinson’s, who were randomly assigned to receive lixisenatide or a placebo. The participants were diagnosed with Parkinson’s within the prior three years and were taking dopaminergic medications, such as levodopa, and continued to do so through the trial. For each participant, researchers assessed symptoms before treatment and after 12 months with daily injection of either placebo or lixisenatide. 

After 12 months of treatment, people who received lixisenatide showed better results with their movement symptoms compared to those who received a placebo. While the movement symptoms of the lixisenatide group did not change compared to the start of the trial, the placebo group experienced worsening of their symptoms.  

After 12 months of taking lixisenatide or a placebo, participants underwent two months without any treatment, with symptoms reassessed. The lixisenatide group showed better movement symptoms compared to the control group after two months, suggesting that lixisenatide may have a positive impact on disease progression.  

Of note, those who received lixisenatide had more gastrointestinal side effects — 46% of participants on lixisenatide had nausea and 13% experienced vomiting. About a third of participants (28 people) receiving lixisenatide opted for a lower dose during the study due to side effects. 

Highlights 

  • The study enrolled 156 people with Parkinson’s, who were randomly assigned to receive either a once daily injection of lixisenatide (a GLP-1 agonist) or a placebo. 

  • After a year of treatment, people who received lixisenatide showed better outcomes in their movement symptoms compared to those who received a placebo. 

  • Lixisenatide caused many participants to have gastrointestinal side effects — 46% of participants had nausea and 13% experienced vomiting. 

What does this mean for GLP-1 drugs and Parkinson’s? 

This study may mean that certain GLP-1 agonists could be beneficial in reducing certain Parkinson’s symptoms. These promising results will inspire more research on the long-term impacts of lixisenatide on PD progression.  

This study had a small sample size and only assessed the drug in those who were newly diagnosed (diagnosed within three years). Larger studies, with significantly more participants living with wider ranges of PD stages, are needed before we can make the connection between GLP-1 agonists and symptom management or disease progression.  

Lastly, there are many GLP-1 agonists currently being researched for PD treatment, and other similar drugs have shown less promising results compared to lixisenatide. More research is needed to understand the differences between various GLP-1 agonists on PD symptoms.  

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

Currently, GLP-1 agonists are only approved for treating diabetes and obesity. People with Parkinson’s who also have diabetes and obesity should talk to their doctor before starting a GLP-1 agonist. There is currently insufficient evidence to support the use of GLP-1 agonists like lixisenatide as a treatment for people with Parkinson’s who do not have diabetes or obesity.  

Additionally, the weight loss associated with GLP-1 agonists may be a problem for the many people with Parkinson’s who experience unintended weight loss through the course of the disease.  

Of note, lixisenatide is no longer available in the U.S.  

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. 

Advancing Research

Improving Parkinson’s Outcomes: Harnessing AI to Evolve Care & Diagnosis

Woman sitting on hospital bed

Nami Shah, MD, is passionate about improving in-hospital and outpatient care for people with Parkinson’s disease (PD). As a Parkinson’s Foundation Wesley G. McCain Movement Disorders Fellow at the University of Rochester Medical Center, a Parkinson’s Foundation Center of Excellence, she is examining how electronic medical record alerts can reduce medication errors during hospital stays.  

Dr. Shah is also part of a study evaluating how AI-technology can identify Parkinson’s symptoms and eventually aid in the diagnosis of PD. And, she is a sub-investigator for a qualitative interview study on freezing of gait. 

Nami Shah headshot

We spoke to Dr. Shah about her exciting work in the PD field, and how working with the Parkinson’s community inspires her. 

"I'm so grateful to have the support of the Parkinson's Foundation. It's critical to have a foundation like this invested in supporting Parkinson's research and in improving care."

- Nami Shah, MD

What led you to Parkinson’s research?

Toward the end of my neurology training, I spent a couple weeks rotating through the movement disorders clinic at the University of Rochester, and that really solidified my decision to not only go into movement disorders and work with patients with Parkinson’s, but to also do research in that area. It was a humbling experience to give a diagnosis of Parkinson’s disease, and to hear patient stories about dealing with the disease each day and during hospitalizations.  

Sometimes patients told me stories about their great care experiences, and the not great experiences too. These stories are what increased my interest in doing research that primarily focuses on trying to improve care for patients with Parkinson’s in the hospital setting and improving some of the tools used in research, so they better reflect what is important to patients and their actual experience with the disease. 

How has this fellowship impacted your career?

It’s been critical to my training. When I completed my neurology residency, I received some basic training in how to take care of patients with Parkinson’s and identify that they have the disease, but this fellowship has really made me appreciate the nuances of Parkinson’s. It has given me confidence in my ability to diagnose Parkinson’s and differentiate it from related disorders.  

How are you helping reduce medication errors in hospital settings for people living with Parkinson’s?

I've been working on this project for over a year now, and we're almost done analyzing results. A group of researchers, before my time, introduced a best practice advisory —an electronic medical alert that is triggered when patients carry a diagnosis of Parkinson's. So, if someone with Parkinson’s is admitted to the hospital and a provider tries to order a contraindicated medication, the alert tells the provider to think about the risk versus benefit of ordering that medication. My part in the project was to look at how this warning system impacted hospital stays and affected the rate of complications.  

Advocate for your best care when in the hospital for an unplanned visit

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The initial analysis shows that it really does have an impact. Not only did the warning system drastically reduce the number of orders of that kind, but it also showed increases in length of stay for patients when they received these contraindicated medications. I think it's promising because it's such a simple intervention, but it can really make a difference for patients with Parkinson’s during hospital stays.  

I'm also working on designing an order set that makes it easier to identify and order time-sensitive medications for patients with Parkinson’s in the hospital. The hope is to make this process easier for providers, especially those who are not as familiar with Parkinson's, and to decrease the risk of increased rigidity, falls, and swallowing difficulties that patients can experience due to delays in administration of these medications. 

Can you explain your research on how AI can help identify symptoms and diagnose PD?

This is still in the early stages, but I think it is exciting to involve AI in Parkinson’s diagnosis. The study I am involved in is having us code patient videos to identify important symptoms that lead to a Parkinson’s diagnosis. The goal is to use this information to train AI technology so it can help with diagnosis and maybe use it as an alerting technique for providers who may not be as familiar with Parkinson’s.  

Are you working on any other Parkinson’s research?

I am serving as a sub-investigator for a qualitative interview study that utilizes novel symptom mapping techniques to evaluate meaningfulness of a novel Freezing of Gait Patient Reported Outcome Assessment, developed by an international consortium of specialists.  

This study is looking at using a symptom mapping technique to illuminate symptoms of importance and interest to patients with Parkinson’s, particularly how they experience freezing of gait. Once we create the map of symptoms, we’re using that to assess whether a specific patient-related outcome measure that has been created in this group is appropriate, whether it is identifying the right symptoms for freezing of gait and whether it accurately reflects the patient experience. The goal is to determine if this tool is good, and if it is good, use it in future research studies to assess therapies that might be curative. 

What gives you the greatest hope regarding your Parkinson’s-related work?

The people with Parkinson’s that I work with in the clinic and in my research projects inspire me. Not only are they incredibly brave when dealing with the daily challenges that Parkinson’s brings, they are also so generous with their time and willingness to help in research that would benefit others in the future. If they weren’t so kind or willing to participate, Parkinson’s care would not have advanced as much as it has. 

Find a movement disorders specialist at Parkinson.org/Search or call the Parkinson's Foundation Helpline at 1.800.4PD.INFO (1-800-473-4636). 

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4 formas en que las personas con Parkinson pueden evitar complicaciones hospitalarias frecuentes

Older woman in hospital bed with two doctors at her bedside

Para la mayoría de las personas, estar en el hospital es una experiencia estresante. Estas personas suelen estar enfermas o atravesando una crisis de salud. En el caso de las personas con la enfermedad de Parkinson (EP), los síntomas  pueden empeorar y pueden aparecer nuevos síntomas, como confusión o cambios en el pensamiento, debido a estrés, infecciones, fatiga, trastornos del sueño, cirugía o nuevos medicamentos. 

Una nueva publicación revisada de más de 35,000 ingresos hospitalarios de personas con Parkinson descubrió un mayor riesgo de delirio y neumonía por aspiración como complicaciones que podrían evitarse.  

Como compartimos en nuestra Guía de seguridad hospitalaria, la preparación y una comunicación clara pueden ayudarle a minimizar las complicaciones y el tiempo de recuperación durante una hospitalización. Comprender los riesgos que enfrenta usted o un ser querido con Parkinson y las formas de cubrir sus necesidades puede ayudar al equipo de atención hospitalaria a brindarle la mejor atención posible.  

Spanish hospital tips graphic

Saber identificar el delirio 

El delirio es un cambio reversible en el nivel de atención y concentración de una persona.  

Los medicamentos contra las náuseas, gastrointestinales y analgésicos, que se administran de forma rutinaria antes y después de una cirugía, pueden empeorar los síntomas existentes de la EP o provocar nuevos síntomas temporales como el delirio. Evitar estos medicamentos puede disminuir el riesgo de desarrollar delirio. 

Asimismo, algunos tratamientos habituales para el delirio no son adecuados para las personas con la EP y pueden empeorar los síntomas del Parkinson y el delirio. Si usted o un ser querido desarrollan delirio en el hospital, es importante evitar los medicamentos antipsicóticos que son antidopaminérgicos; es decir, que disminuyen la cantidad de dopamina en el cerebro.  

Las personas con Parkinson sólo deben recibir uno de los tres antipsicóticos que son seguros:  

  1. Pimavanserin (Nuplazid) 

  1. Quetiapina (Seroquel) 

  1. Clozapina (Clozaril).  

Todos los antipsicóticos, a excepción de estos tres, deben evitarse en casi todas las circunstancias. 

Lea nuestra lista de medicamentos que debe evitar 

Conozca los signos de la neumonía por aspiración  

La neumonía por aspiración es responsable de un 70% de las muertes entre las personas con la EP, según un estudio de los NIH.  

La neumonía por aspiración se produce cuando las bacterias de la boca descienden a los pulmones y causan una infección. Esto puede ocurrir después de que una persona aspire (es decir, trague de forma incorrecta) y algo penetre en sus vías respiratorias o pulmones. La aspiración sucede con mayor frecuencia cuando se tienen problemas para tragar (disfagia), que es un síntoma común del Parkinson.  

Para prevenir la aspiración y la neumonía por aspiración, las personas con Parkinson deben hacerse pruebas de detección de alteraciones al tragar (deglución), también conocidas como disfagia, para mantener con seguridad su rutina de medicación y minimizar el riesgo de neumonía por aspiración y pérdida de peso.  

Además, asegurarse de que usted o su ser querido con Parkinson reciban sus medicamentos para el Parkinson a tiempo y evitar los medicamentos contraindicados que no son seguros para las personas con la EP también puede ayudar a prevenir el desarrollo de una nueva disfagia o el empeoramiento de una disfagia leve.  

Consejos para evitar el delirio y la neumonía por aspiración en el hospital

Consejo 1.  Evite los medicamentos que no sean seguros para el Parkinson  

Esto puede ayudarle a: 

  • Evitar el delirio causado por la toma de medicamentos contraindicados contra las náuseas. 

  • Evitar el empeoramiento del delirio causado por la toma de medicamentos antipsicóticos contraindicados. 

Revise la lista de medicamentos perjudiciales en el Resumen de cuidados para el Parkinson con el equipo médico del hospital antes de la intervención quirúrgica y antes de que le receten cualquier medicamento nuevo. 

Consejo 2. Siempre tome los medicamentos a tiempo para ayudar a evitar que empeoren o que surjan nuevos problemas al tragar

Si a su enfermera o terapeuta del habla y el lenguaje le preocupa su capacidad para tragar, hablen de formas seguras en que pueda seguir tomando los medicamentos, como con un sorbo de agua o triturados con puré de manzana. 

Utilice el Formulario de medicamentos para anotar todos sus medicamentos para el Parkinson y otras afecciones, incluidos los medicamentos sin receta y los suplementos, en el orden en que los toma cada día. Su lista debe estar claramente etiquetada con la dosis (normalmente mg o miligramos) y la hora específica a la que toma cada medicamento. 

Descargue el Formulario de medicamentos 

Consejo 3. Informe a sus enfermeras si tiene problemas para tragar y pida ver al terapeuta del habla y el lenguaje  

Juntos, su enfermera y su terapeuta del habla y el lenguaje pueden darle medidas de seguridad para disminuir los riesgos. 

Es posible que tenga que dejar de comer y beber temporalmente si tiene un problema grave de deglución (disfagia) o tiene programada una intervención médica que requiera ayuno. Si a usted o a su ser querido le indican que no puede tragar pastillas, muestre a la enfermera y al terapeuta del habla y el lenguaje “Otras formas de tomar la medicación” para explorar posibles formas de seguir tomando con seguridad los medicamentos para la EP. 

Si tiene problemas al tragar o al hablar, le recomendamos que vea regularmente a un terapeuta del habla y el lenguaje. Una vez dado de alta, pida a su médico que lo mande con un especialista o llame a nuestra Línea de Ayuda al 1-800-4PD-INFO (1-800-473-4636), opción 3 para español. 

Consejo 4. Reducir el riesgo de neumonía por aspiración es un proceso en dos partes 

Ayude a reducir la neumonía por aspiración durante la hospitalización y en casa, lo que implica (1) prevenir los problemas al tragar y (2) reducir las bacterias en su boca limpiándose los dientes y la boca con regularidad.  

Evite la aspiración comiendo cuando la medicación para la EP esté haciendo efecto y tenga energía. También puede ser útil sentarse derecho para comer y tomar bocados más pequeños. Evite la neumonía por aspiración cepillándose los dientes, la lengua y la boca antes y después de comer para reducir las bacterias.  

Lea más acerca de las medidas que puede tomar para evitar el delirio, la neumonía por aspiración y otras complicaciones evitables en nuestra Guía de seguridad hospitalaria

Ayuda a pasar la voz 

Comparta este gráfico en Facebook para ayudar a sus amigos y familiares con Parkinson a mantenerse seguros en el hospital. 

My PD Story

Catherine Weindel Headshot
Researchers

Catherine (Chi) Weindel, PhD

2019 Postdoctoral Fellowship
2022 Launch Award

Investigating the Link Between Parkinson’s, Genetics and the Immune System 

For decades, we have known that inflammatory changes occur in the brain of people with Parkinson’s disease (PD). But in the last few years, inflammation has been studied as a possible cause of the progressive nature of the disease and not just a result of it.

Catherine (Chi) Weindel, PhD, is studying this connection, specifically focusing on how one variant or mutation of the Parkinson’s disease-linked gene LRRK2 impacts immune health. She hopes this research will pave the way for a deeper understanding of how Parkinson’s starts and progresses, along with avenues for potential new therapies. 

LRRK2 and PD

The LRRK2 gene plays a role in about 1% of all people with PD and 5% of those with a family history. LRRK2 variants are autosomal dominant — this means that inheriting only a single mutated copy of a gene from one parent can potentially lead to disease. Mutations in LRRK2 can result in the enzyme becoming overly active in the brain, leading to cell death in ways we do not yet fully understand.

“My research involves the study of the immune system. What I am interested in is determining how the immune system might be different in people with Parkinson’s genetic mutations, which would cause a difference during an infection or in response to an environmental toxin,” said Dr. Weindel. “I am studying how alterations or modulations in an immune response could build up over time, piece by piece, and might predispose someone to develop Parkinson’s later in life.” 

When Dr. Weindel first began investigating Parkinson’s, she suspected that immune system inflammation, triggered by illnesses and loss of dopamine neurons outside the brain, could ultimately lead to the development of the disease. This line of thinking led to her Parkinson’s Foundation Postdoctoral Fellowship, where she designed a study to explore how a LRRK2 G2019S mutation may impact mitochondria, which provide energy for a cell, when immune cells have been stressed by infection. 

She discovered that during an infection, when immune cells with LRRK2 mutations die, they uniquely increase inflammation that promotes the spread of bacteria throughout the body. This cell death seems similar to what researchers find in brains of people and mice with PD. 

As a 2022 Parkinson’s Foundation Launch Award recipient, Dr. Weindel is taking her research a step further to gain a deeper understanding of how LRRK2 gene mutations cause cell death in immune cells in the brain. This will lead to the identification of new targets for Parkinson’s therapy that may better control inflammation, for instance. Her research will also help design improved genetic tests to give families with a history of Parkinson’s better insight into their risk for developing PD. 

According to Dr. Weindel, genetics research is vital to understanding the connection between Parkinson’s disease and the immune system’s response because even when family members have the same PD mutation, the disease may present itself differently in each person. By looking at complex genetic interactions, we can see alternative pathways impacting specific individuals, which can dictate better clinical trials or potential therapies. 

“My goal is to develop therapeutics that will allow for a more personalized medical approach,” Dr. Weindel said. “Because Parkinson’s is such a diverse disease, a cure-all is very unlikely. Ideally, a particular therapeutic can one day be designed for an individual based on the genetic makeup of their Parkinson’s.” 

Explore ongoing Parkinson’s Foundation research, including our landmark genetics study, PD GENEration at Parkinson.org/PDGENEration

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12 Milestones You Helped Us Achieve In 2024

2024 was a notable year for the Parkinson’s Foundation. It was 365 days of advancing research, listening to inspiring stories and forming deeper connections with people living with Parkinson’s disease (PD), their families, care teams and researchers.  

With your support, we amplified our commitment to connecting more people to critical PD resources, expanding life-changing research and building a stronger, more inclusive network for those navigating Parkinson’s.  

2024 Accomplishments Graphic

Thanks to YOU, here are the top 12 ways we made a difference this year: 

1. Published PD GENEration study findings and expanded to new countries

Woman putting wristband on mans hand at event table.

In 2024, PD GENEration: Mapping the Future of Parkinson’s Disease expanded to new countries. We moved our genetics study into its next phase with support from the Global Parkinson's Genetics Program (GP2), a program of the Aligning Science Across Parkinson's (ASAP). This funding allowed us to expand recruitment and reach more people across the U.S., Canada, Latin America, South America and beyond.  

In 2024, our genetics study shared these published results

  • Provided genetic testing and counseling to 17,944 people with Parkinson’s, at no cost.

  • Approximately 13% of people with Parkinson’s have a genetic link to the disease.

  • 77% of participants have never participated in a research study before. 

Additionally, PD GENEration began using a new, enhanced genetic test. We went from identifying seven PD-related genes to whole genome sequencing, which provides researchers with the most comprehensive data to study the genetics behind PD.  

Enroll Now 

2. Funded 33 Scientists advancing high-risk, high-reward research

In 2024, we awarded nearly $3 million in research grants to 33 scientists conducting high-risk projects that do not typically receive federal funding. These are the kinds of projects that explore original approaches to care and propose new treatment ideas.

Explore our ongoing research

Meet Henricus Ruhe, MD, PhD

2024 Parkinson’s Foundation Impact Awardee 

Understanding how depression and PD overlap in the brain is the focus of Dr. Ruhe’s Foundation-funded research. Over the next few years, he will work to identify the connections between depression and PD, which could uncover new treatments for both.  

Henricus Ruhe headshot

3. Led the national effort to provide reliable PD hospital care

Hospital Safety Guide Cover

Each year, more than 300,000 people with Parkinson’s are hospitalized in the U.S. In 2024, we led the national effort to improve hospital care for Parkinson’s through systemic change. Our Hospital Care Initiative aims to help people with PD receive more reliable hospital care. To drive the change, we published a new Hospital Safety Guide for the community, distributing over 18,000 copies at no cost — and Hospital Care Recommendations for healthcare professionals.  

Order or download the Hospital Safety Guide 

4. Advocated for President to sign National Parkinson's Project into law

In 2024, President Biden signed the National Parkinson's Project into law. This is the first-ever federal legislation dedicated to ending Parkinson’s. Here are some ways this monumental bill can make an impact:   

  • Dramatically increase federal research funding 

  • Develop more effective pathways for treatments and cures 

  • Improve early diagnosis 

  • Spark new and improved models for patient care 

  • Address health disparities in diagnosis, treatment and clinical trial participation 

In 2025 and beyond, the Parkinson’s Foundation is excited and honored to advocate for the PD community to help this new law create meaningful change. 

Learn more 

5. Funded local Parkinson’s programs in 40 states

Group of people doing yoga sitting down

We awarded more than $1 million in community grants for programs that help people living with PD in 40 states. Every health and wellness program we fund helps people live better with PD — from Rock Steady boxing and dancing classes to support groups. Since 2011, the Foundation has devoted more than $11.5 million in 879 community-based programs. 

Pictured: Parkinson’s Foundation Community Grantee, San Francisco Ballet School offers free weekly classes, social gatherings, tickets to ballet performances, dance education and more. Read Cecelia’s story now

To find your nearest exercise or wellness class, visit your local chapter’s webpage or call our Helpline at 1-800-4PD-INFO (1-800-473-4636).  

6. Raised $38.4 million to advance research, care and community programs through our Reach Further campaign

Thanks to our amazing supporters, our Reach Further fundraising campaign exceeded its goal early. In just three years, we raised $38.4 million to accelerate progress in Parkinson’s research, improve care and increase access to quality-of-life programs. 

Keep the momentum going. Donate now 

Reach Further Impact Infographic

7. Bolstered Parkinson’s awareness year-round

John Lehr at ABC News

Throughout April we brought awareness to the #ABCsofPD, highlighting the most pressing Parkinson’s symptoms and topics. On April 2, 2024, we had the opportunity to ring the Nasdaq closing bell for Parkinson's Awareness Month. Opportunities like this are an impactful way we can reach more people and shine a light on the 10 million people living with PD worldwide.  

Cast of Broadway's "A Beautiful Noise" Donating Check in honor of Neil Diamond

On April 18, 2024, the producing team behind the Broadway hit, A Beautiful Noise: The Neil Diamond Musical presented $750,000 to the Parkinson’s Foundation in honor of legendary singer, songwriter and performer Neil Diamond, who is living with Parkinson’s.   

We believe in spreading Parkinson’s Awareness year-round through steadily releasing new blog articles, podcast episodes, resources and interacting with our incredible community through social media. 

Follow us and share one of our posts with your friends 

8. Reached 1 million visits to our new Spanish PD pages

Hispanic and Latino members of the PD community often face distinct barriers to living well with Parkinson’s. Guided by our Spanish Advisory Group, we continue to develop educational opportunities and new resources for the greater Spanish-speaking Parkinson’s community. In 2024, our more than 50 Spanish pages on Parkinson.org reached 1 million visits. This information is not only reaching those who need them, but helping spread Parkinson’s awareness all over the world.  

Explore our Spanish pages  

9. Reached 7,000 people through our volunteers

Darrell Allers headshot

Volunteers are essential to our mission, helping us with outreach and representing us at local events. This year, we trained 232 Parkinson’s Foundation Ambassadors, who completed 195 presentations and reached 7,000 people. 

Darrell Allers is a Parkinson’s Foundation Ambassador whose diagnosis eventually led him to volunteering, helping educate his community about Parkinson’s. Read his story

Find a volunteer opportunity near you 

10. Furthered our commitment to discovering new PD medications

We continue to provide early-stage funding for compounds that have the potential to become Parkinson’s drugs through our drug discovery and development initiative, Parkinson’s Virtual Biotech. Together with Parkinson's UK, we’re funding studies developing new, PD medications in years, not decades.  

Learn more 

11. 20,000 participants raised more than $8.3 million through community fundraising events

Peggy Faber holding a baby crocodile after a race

Parkinson’s Foundation community fundraisers raised an impressive $8.3 million to advance PD research, access to care and life-changing resources in 2024. Together, every Moving Day, A Walk for Parkinson’s, walker, Parkinson’s Champion fundraiser and Parkinson’s Revolution rider brought us closer to a cure. 

Peggy Farber joined Parkinson’s Champions to team up with other athletes with PD and be part of a louder voice in raising awareness. Read her story

Find a Moving Day near you 

Become a Parkinson’s Champions 

Join us for Parkinson’s Revolution 

12.  Connected caregivers to vital resources for preventing burnout

In November for National Family Caregivers Month, we highlighted the importance of caregiver well-being through addressing the challenges of burnout. We connected more people to support and resources that highlight the importance of self-care initiatives aimed to empower care partners. 

Caregiver burnout is a state of physical, emotional and mental exhaustion experienced by individuals who care for others, typically family members or loved ones, who are unable to care for themselves. 

Explore our care partner resources 

 

In 2025, we’re setting our sights on even greater achievements for everyone impacted by Parkinson’s— and we can’t do it without you. 

Donate today

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