Meet a Researcher Investigating a Missing Link Between Genetic Mutation and Protein Clumping in PD
After decades of research, several genetic mutations have been linked to Parkinson’s disease (PD) but we do not fully understand how these mutations cause PD.
One such PD-associated mutation leads to the production of a malfunctioning version of the protein Leucine Rich Repeat Kinase 2 (LRRK2). Faulty LRRK2 is believed to disrupt several important processes within neurons and consequently contribute to PD progression, but how exactly these disruptions lead to the disease is still being studied.
When looking at the posthumous brain tissue of people who had LRRK2-mutant PD, scientists have routinely seen unhealthy aggregates or clumps of a protein called tau. Similar to alpha-synuclein clumping, tau clumping is believed to contribute to the disease-related breakdown of dopamine neurons and is associated with PD dementia.
Silas Buck, PhD, recipient of a Parkinson’s Foundation Postdoctoral Fellowship, is investigating how a relatively understudied protein called Histone Deacetylase 6 (HDAC6), which is responsible for regulating tau and keeping it from clumping, may be affected by mutant LRRK2 and drive PD-related cellular breakdown.
“What I’m studying is how LRRK2 may cause the accumulation of a protein called tau. When tau is misfolded, it can accumulate into these clumps in the brain cells and that can cause neurons, or brain cells, to degenerate and lead to not just movement symptoms, but tau, specifically, is also associated with the cognitive symptoms that are seen in Parkinson’s. So, addressing the cause of tau protein accumulation can potentially treat non-movement symptoms in people with PD,” said Dr. Buck.
Using neurons grown in petri dishes, Dr. Buck will first measure how much LRRK2 and HDAC6 interact in healthy brain cells.
Then, he will introduce mutant LRRK2 into those cells and analyze how that affects the LRRK2-HDAC6 interactions and if such changes result in tau clumping. Finally, Dr. Buck will investigate if mutant LRRK2’s impact on HDAC6 also contributes to disrupted mitochondria repair and cleanup, another cellular stressor commonly seen in PD brain tissue.
Uncovering more biochemical links in the chain between gene mutation and PD means more opportunities to intervene in the disease’s progression. Through Dr. Buck’s experiments, we will understand more about HDAC6’s role in PD development and how it could be the target of new future therapies, expanding the effective medication options and improving doctors’ ability to provide genetically personalized treatment plans for people with Parkinson’s.
“Studying these proteins and how they are dysfunctional in Parkinson’s disease can inform us not just about those genetic cases but also how Parkinson’s disease forms in cases that do not have a clear genetic form as well,” Dr. Buck said.
“This fellowship from the Parkinson’s Foundation is key to helping me develop into a fully independent scientist and investigator, where I can one day have my own research program and run my own lab to continue investigating mechanisms of degeneration in Parkinson’s disease,” Dr. Buck said. “Receiving this postdoctoral fellowship allows me to pursue my passion of performing exciting and important research that could one day help substantially improve the lives of people with Parkinson’s disease. It has always been my dream to make a difference in the health of others through research, and I hope to achieve that through this project.”
Actualización: Un nuevo estudio revela que fármacos como el Ozempic son ineficaces en el tratamiento del Parkinson
Este mes de febrero, un nuevo estudio publicado en la revista médica The Lancet ha despertado importantes dudas acerca de la eficacia potencial de la clase de fármacos para la diabetes agonistas del receptor GLP-1 en el tratamiento de la enfermedad de Parkinson (EP).
Un ensayo clínico de fase 3 evaluó el agonista del receptor de GLP-1 llamado Exenatida. El estudio, que constó de 194 participantes a quienes se dio seguimiento durante dos años, encontró que el uso diario de Exenatide no proporcionó ninguna mejora significativa para los síntomas del Parkinson en comparación con el placebo. Esta falta de mejora fue consistente en todos los grupos de edad, sexos y estadios de la EP. Los investigadores también realizaron tomografías computarizadas (CT scan) del cerebro antes y después del estudio en participantes seleccionados y descubrieron que la Exenatida no afectaba la actividad dopaminérgica en las regiones cerebrales relevantes para la EP.
Estos resultados sugieren que los actuales medicamentos agonistas del receptor GLP-1 no son eficaces como tratamientos modificadores de la enfermedad de Parkinson. A medida que los científicos aprendan más acerca de la vía biológica del GLP-1 y cómo afecta la salud de las neuronas dopaminérgicas, es probable que en el futuro se desarrollen y se pongan a prueba nuevos medicamentos con GLP-1 específicamente diseñados para el Parkinson.
¿Podrían los medicamentos para la diabetes como el Ozempic ser un tratamiento para el Parkinson?
Un ensayo clínico de lixisenatida, un fármaco aprobado por la FDA en 2016 para tratar la diabetes, mostró potencial para reducir los síntomas motores en personas con Parkinson
La enfermedad de Parkinson (EP) es un trastorno neurodegenerativo en el que las células cerebrales productoras de dopamina se descomponen lentamente con el paso del tiempo. Esta pérdida de dopamina provoca diversos síntomas motores, como temblor, rigidez, lentitud de movimientos y problemas con el equilibrio. Aunque los tratamientos actuales pueden ayudar a controlar muchos de los síntomas de la EP, no abordan las causas de la enfermedad y, por lo tanto, no pueden evitar su progresión.
Nuevas investigaciones sugieren una posible relación entre la disminución de la sensibilidad del cerebro a la hormona insulina y la progresión del Parkinson. Esta observación ha llevado a los investigadores a estudiar si los medicamentos antidiabéticos que ayudan a controlar los niveles de insulina podrían ralentizar la progresión del Parkinson.
Los fármacos Ozempic y Wegovy pertenecen a una clase de medicamentos para la diabetes llamados agonistas de los receptores GLP-1 que, junto con algunos otros medicamentos para la diabetes, han mostrado potencial para reducir el riesgo de desarrollar Parkinson en personas con diabetes. Estos fármacos imitan la acción de una hormona natural que regula los niveles de azúcar en sangre.
Sin embargo, se desconoce si los fármacos agonistas del receptor GLP-1 pueden beneficiar a las personas con Parkinson que no tienen diabetes.
Un reciente ensayo clínico, publicado en el New England Journal of Medicine, analizó si un agonista del GLP-1 llamado lixisenatida podría ofrecer un nuevo enfoque de tratamiento para las personas en los primeros estadios del Parkinson. El estudio mostró que la lixisenatida, que fue aprobada por la FDA en 2016 para ayudar a los diabéticos a controlar el azúcar en la sangre, ayudó con los síntomas motores en personas con la EP y podría ralentizar la progresión del Parkinson.
Como parte de este estudio, un modelo de ratón del Parkinson demostró que la lixisenatida mejoraba los problemas motores y preservaba las células cerebrales, lo que sugiere que los agonistas del GLP-1 podrían tratar las causas subyacentes de la EP.
Además, la lixisenatida no es el único agonista del receptor GLP-1 con potenciales aplicaciones terapéuticas para el Parkinson: al menos otros seis medicamentos similares están bajo evaluación actualmente como tratamiento potencial para la EP. Sin embargo, en comparación con la liraglutida y la semaglutida (como Wegovy), la lixisenatida parece ser más eficaz en atravesar la barrera hematoencefálica.
Resultados del estudio
El nuevo estudio, —un ensayo clínico de fase 2—, reclutó a 156 personas con Parkinson, que fueron asignadas aleatoriamente para recibir lixisenatida o un placebo. Los participantes fueron diagnosticados con Parkinson dentro de los tres años anteriores y estaban tomando medicamentos dopaminérgicos, como la levodopa y continuaron haciéndolo durante el ensayo. Para cada participante, los investigadores evaluaron los síntomas antes del tratamiento con la inyección diaria de placebo o lixisenatida y 12 meses después.
Tras 12 meses de tratamiento, las personas que recibieron lixisenatida mostraron mejores resultados en sus síntomas motores en comparación con las que recibieron un placebo. Mientras que los síntomas motores del grupo de lixisenatida no cambiaron en comparación con el inicio del ensayo, el grupo de placebo experimentó un empeoramiento de sus síntomas.
Tras 12 meses de tomar lixisenatida o un placebo, los participantes se sometieron a dos meses sin ningún tratamiento y se volvieron a evaluar los síntomas. El grupo de lixisenatida mostró mejores síntomas motores en comparación con el grupo de control después de dos meses, lo que sugiere que la lixisenatida puede tener un impacto positivo en la progresión de la enfermedad.
Cabe destacar que los que recibieron lixisenatida tuvieron más efectos secundarios gastrointestinales: un 46% de los participantes que tomaron lixisenatida tuvieron náuseas y 13% experimentaron vómitos. Aproximadamente un tercio de los participantes (28 personas) que recibieron lixisenatida optaron por una dosis inferior durante el estudio debido a los efectos secundarios.
Destacados
En el estudio participaron 156 personas con Parkinson, que fueron asignadas aleatoriamente a recibir una inyección diaria de lixisenatida (un agonista del GLP-1) o un placebo.
Tras un año de tratamiento, las personas que recibieron lixisenatida mostraron mejores resultados en sus síntomas motores en comparación con las que recibieron un placebo.
La lixisenatida provocó efectos secundarios gastrointestinales en muchos participantes: un 46% tuvo náuseas y un 13% experimentó vómitos.
¿Qué significa esto para los medicamentos del GLP-1 y el Parkinson?
Este estudio puede indicar que ciertos agonistas del GLP-1 podrían ser beneficiosos para reducir ciertos síntomas del Parkinson. Estos prometedores resultados inspirarán más investigaciones sobre los efectos a largo plazo de la lixisenatida en la progresión de la EP.
Este estudio tenía un tamaño de muestra pequeño y sólo evaluó el fármaco en los recién diagnosticados (diagnosticados en los últimos tres años). Se necesitan estudios más amplios, con un número significativamente mayor de participantes que vivan con rangos más amplios de los estadios de la EP, antes de que podamos establecer una conexión entre los agonistas del GLP-1 y el control de los síntomas o la progresión de la enfermedad.
Por último, actualmente se están investigando muchos agonistas del GLP-1 para el tratamiento de la EP y otros fármacos similares han mostrado resultados menos prometedores en comparación con la lixisenatida. Se necesitan más investigaciones para comprender las diferencias entre los distintos agonistas del GLP-1 sobre los síntomas de la EP.
¿Qué significan estos hallazgos para las personas con la EP en este momento?
Actualmente, los agonistas del GLP-1 sólo están aprobados para el tratamiento de la diabetes y la obesidad. Las personas con Parkinson que también tienen diabetes y obesidad deben hablar con su médico antes de empezar a tomar un agonista del GLP-1. Actualmente no hay pruebas suficientes que respalden el uso de agonistas del GLP-1 como la lixisenatida como tratamiento para las personas con Parkinson que no tienen diabetes ni obesidad.
Además, la pérdida de peso asociada a los agonistas del GLP-1 puede ser un problema para las muchas personas con Parkinson que experimentan una pérdida de peso involuntaria a lo largo de la enfermedad.
Cabe destacar que la lixisenatida ya no está disponible en los EE.UU.
Aprenda más
La Parkinson’s Foundation cree en el empoderamiento de la comunidad de Parkinson a través de la educación. Aprenda más acerca de la EP y de los temas en este artículo a través de nuestros recursos mencionados abajo o llame a nuestra Línea de Ayuda gratuita al 1-800-4PD-INFO (1-800-473-4636), opción 3 para español, para obtener respuestas a sus preguntas acerca del Parkinson.
My father was diagnosed with Parkinson’s disease (PD) in the mid-to-late 90s and he lived with PD until his passing in 2012. I was diagnosed with PD in 2019, and I was quickly frustrated that I was being given the same drug for PD my father had used 30 years ago.
It seemed an inordinately long time to not have progressed more with treatments and drugs. Certainly, there were some advances to treat Parkinson’s symptoms, like deep brain stimulation (DBS), but it all seemed to circle back to the primary PD drug carbidopa-levodopa.
As I navigated this reality, and my Parkinson’s symptoms, I eventually connected with the Parkinson’s Foundation. I appreciated that the Foundation’s resources made clear that Parkinson’s is not just a movement disorder. Some neurologists I have dealt with don’t seem to care as much about the non-movement symptoms, and I have those in spades (and had them for a number of years before my actual PD diagnosis).
Learning about how PD impacts so many systems in my body and how common these non-movement symptoms are through the Foundation has been helpful and is just one part of the personalized approach the Foundation does so wonderfully. That personalized approach is why I began to financially support the Foundation.
What meaningfully differentiated the Parkinson’s Foundation from the other PD charities in my mind was when I learned about the Foundation’s Parkinson’s Virtual Biotech initiative. I truly became excited as it seemed to me to be an optimal approach to accelerate research on developing new treatment options as well as finding the cause of PD. The usual institutional approach has not seemed, to me at least, to have made the kind of progress needed, particularly considering the significant increase in the number of people being diagnosed with PD.
Real, original research and development often occurs through the efforts of individuals who do not accept the status quo and believe enough in their own work to take the risks (and those risks are significant) of stepping out on their own to accelerate the development of their ideas. Things can get caught up in the bureaucracy of larger institutions (and, in some institutions, perhaps “group think”) that dampens both the creativity and speed of innovation needed for truly breakthrough developments.
I was looking for something to support that was nimbler and led by people with real passion and belief in their own work, and I found it in the Parkinson’s Virtual Biotech initiative. The initiative’s combination of science and private entrepreneurialism is an excellent way to accelerate advances in applied research and development. Through this initiative, the Foundation makes venture capital investments in early-stage companies focused on PD research and development.
Additionally, the Parkinson’s Virtual Biotech uses an investment model I am familiar with and have seen work successfully a number of times throughout my 40-year career as a corporate lawyer with a particular focus in securities law.
I know the various stages of the venture capital process, the need to do significant technical due diligence and to properly evaluate a company’s management team to be comfortable with their ability to develop and follow through on a business plan to achieve the scientific and commercial objectives of the project.
I like the fact that Parkinson’s Virtual Biotech investments in a company are made in stages based on the company’s achievement of certain milestones. The Parkinson’s Foundation and Parkinson’s UK have the resources to do that due diligence and keep the focus on Parkinson’s disease. They also mentor the management teams when necessary to assist in their success.
I believe that through the Parkinson’s Virtual Biotech, the Parkinson’s Foundation can make a real difference in efforts to advance treatment options and ultimately cure Parkinson’s disease. Where else can you find the expertise (both in PD and in venture capital investments) found in the Parkinson’s Foundation and Parkinson’s UK, the access to many investment opportunities that are brought to this initiative and the management mentoring to move these projects forward? I am unaware of other PD focused organizations doing this and it is something that I am very passionate about supporting it.
I believe this model has the best chance to work for Parkinson’s and to make leaps of progress that are important if we hope to slow disease progression, eventually stop other people from getting it and finally learn what causes Parkinson’s disease. I would encourage anyone to join me in supporting the Parkinson’s Virtual Biotech initiative.
Part of my PD journey involves a scary hospital experience in 2023. While my daughter and I were on a cross-country road trip together I began experiencing severe dyskinesia (involuntary, erratic, writhing movements of the face, arms, legs or trunk) and cramping. This is fairly common for me, and sometimes, when this happens, I use THC (medical marijuana) to find relief.
However, when I did this time, I became unresponsive, which had never happened before. My daughter pulled over to call 911 and an ambulance transported me to the hospital.
The next thing I knew, I woke up in the ER. I thought I was having a bad dream. My daughter explained to the medical team that I have Parkinson’s, and like many others, use THC to help manage my symptoms.
The ER team was convinced I was a drug addict and treated me like I had done something wrong. My daughter and I were both shocked and scared. They didn’t believe I had Parkinson’s, and they refused to perform any tests or allow me to take my Parkinson’s medications.
Unfortunately, it took several hours to convince the medical team that my Parkinson’s medications were essential. Once they realized these weren’t street drugs, my medications were administered, and my symptoms became under control.
The doctor neglected to contact my neurologist, and further testing was never done. I was treated carelessly and discharged the same day. When I talked with my neurologist after the hospitalization, he said that I experienced a “dystonic storm.”
Since then, I have taken time to process this traumatic experience and learned how to advocate for myself as a person with Parkinson’s. Most recently, I underwent deep brain stimulation (DBS) surgery that changed my life — and greatly improved my symptoms.
While we don’t always know when we are headed for a hospital stay or ER visit, there are ways to prepare. The Parkinson’s Foundation Hospital Safety Guide can help you and your loved ones prepare before your next planned or unplanned hospital visit so that you feel prepared to navigate the hospital with confidence.
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.
How Our Genetics Study Evolved in One Year: More Access & New Parkinson’s Insights
In 2024, the Parkinson’s Foundation expanded its international 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.
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.
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.
What People with Parkinson’s Want Health Professionals to Understand
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).
Empowering Black and African American Communities with Parkinson’s: Education and Advocacy in Action
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.
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.
Tailored Programming to Address Community Needs
The Parkinson’s Foundation hosted three Parkinson’s Journey in Color events in 2024.
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.
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.
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.
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
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.
“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.
Meet a Researcher Studying How Boosting Immune Cells Could Lead to a Preventative Parkinson’s Therapy
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.”
Update: New Study Finds Drugs like Ozempic Ineffective for Parkinson’s Treatment
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.
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.
