Start preparing at least two weeks before your next Parkinson's disease (PD) appointment so you’re ready to talk about what matters most to you.
Use this worksheet to choose your top three appointment topics. Consider working on it with someone you trust for another point of view.
Part 1: Think About How Parkinson’s Affects Your Life
Keep notes on PD concerns between appointments. Use a journal, send yourself an email, record a voice memo or use an app.
Consider each of these areas:
Physical health
Mental health
Family & friends
Work
Everyday activities, chores
Activities you enjoy, hobbies
Step 1) Symptoms: Reflect on what’s new or different.
Which symptoms bother you most? How do they impact your daily life?
What makes symptoms worse or better?
Did changes made at your last appointment help with symptoms (medications, therapy, diet)?
Have your family or friends noticed any changes?
Step 2) Goals: Consider what matters most to you.
What are you focused on right now (work, family, hobbies, travel)?
What activities do you want to keep doing?
Do symptoms make it hard to do the things you enjoy?
Step 3) Concerns: Think about your biggest questions or worries.
Are you worried about medications (not lasting as long, costs, side effects)?
How is Parkinson’s affecting your relationships?
Do you need help finding Parkinson’s resources and support?
Part 2: Decide What is Most Important for this Appointment
Step 4) Choose your top 3 topics for the appointment.
Now that you’ve reflected, think about what's affecting your daily life and needs to be addressed as soon as possible. Finish this sentence:
“If I can only discuss three things with my healthcare team during this visit, the most important are ______________.”
Step 5) Write down your top 3 topics.
Write topics in priority order and bring the list to share at the start of your next appointment. Be as specific as you can. For symptoms, include how often you have them and at what time of day they happen. Consider bringing a video of movement symptoms to show your healthcare team.
Important Reminders
Share any symptom that bothers you, even if you’re not sure it’s related to PD.
Bring a list of all your medications to your visits, including non-PD medications. Include the time you take them and the amount.
If possible, take someone you trust with you to appointments.
Learn about PD symptoms and treatments to help you communicate with your care team.
Need Help?
Contact the Parkinson’s Foundation Helpline at 1-800-4PD-INFO (473-4636) or Helpline@Parkinson.org. Our Helpline team can:
Help you prepare before an appointment.
Answer PD questions you didn’t address during appointments.
Locate PD specialists, support groups and exercise classes near you.
Engaging the Parkinson’s Community in Research: The Path to Better Treatments
PD community involvement in trial design outshines recent clinical trial outcomes
The role of people with Parkinson’s disease (PD) in shaping research has never been more critical than today. “People living with Parkinson’s are experts, they have the lived experience and should be engaged as equal partners in the drug development process,” said Evelyn Stevens, Parkinson’s Foundation Senior Director of Community Engagement.
One avenue of engagement is the Patient Engagement Council for Parkinson’s Research (PECPR). Established in 2021, the PECPR has worked to ensure that the Parkinson’s community has a seat at the table in drug development. A collaboration between UCB, the Parkinson’s Foundation, Parkinson’s UK, and five people living with Parkinson’s, the council believes patient insights should guide research priorities.
The goal of the PECPR was to engage those with PD in research and trial design, guiding development toward results that will most impact and benefit their lives. The council:
Developed a “playbook” for including people with Parkinson’s feedback, ensuring that medicines are designed to address what matters most to the PD community.
Prioritized accessibility and inclusivity in all stages of treatment research, so that treatments are developed with the wide diversity of the PD community in mind.
Advanced the field of disease-modifying therapies for PD, which seek to slow, stop, or even reverse the disease progression rather than simply treat its symptoms.
The council’s efforts were recognized when it won a 2024 Made with Patients award from the Patient Focused Medicines Development, underscoring the impact of patient-driven collaboration.
PECPR played a key role in shaping a recent clinical study called ORCHESTRA, testing the efficacy of the pharmaceutical company UCB’s drug, minzasolmin. Unfortunately, in December 2024, UCB announced the study did not meet its efficacy goals. Days later, another pharmaceutical company, Roche, announced similar results — their intravenous PD drug called prasinezumab also missed the primary endpoint, but suggests possible benefit in early-stage PD.
Both drugs were designed to slow the progression of PD by targeting a protein called alpha-synuclein normally found in the brain. When this protein is mishappen and builds up in the brain it disrupts brain function and leads to PD symptoms. Neither drug significantly slowed disease progression in trial participants when compared to the participant group that received a placebo.
“Developing effective disease-modifying PD treatments comes with numerous challenges,” said Maggie Caulfield, PhD, Director of Research at the Parkinson’s Foundation. “One concern is that a therapy needs to reach the right area in the brain, get into the right cells, and interact with a particular molecule — all in a system where cells in the brain are already unhealthy.”
While the minzasolmin trial did not yield the hoped-for results, PECPR’s mission remains unchanged: to push for research that directly addresses the real needs of people with Parkinson’s.
Looking ahead, PECPR is focused on expanding patient engagement strategies, refining accessibility in research, and continuing to advocate for treatments that go beyond symptom management to fundamentally change the course of Parkinson’s.
Strengthening the Odds of Finding New Disease Modifying Therapies
While trial failures for disease modifying therapies for PD are disappointing, they ultimately provide researchers with new, valuable data that will guide the next round of treatments. Researchers can utilize data (positive and negative results) to help overcome previous biological hurdles.
“Parkinson’s researchers will keep trying and tweaking until we have the next breakthrough,” said Dr. Caulfield, “There are all kinds of different ways that researchers and clinicians are trying to reach disease related targets, we just have to keep pushing and eventually something will work.”
One area where patient engagement is vital is in genetics research. Understanding the genetic factors behind PD can help researchers develop more targeted, effective treatments. Pharmaceutical companies are already partnering with people with PD to improve their clinical trials that are based on genetic ties to PD.
Studies like the Parkinson’s Foundation PD GENEration: Mapping the Future of Parkinson’s Disease are advancing this effort by offering free genetic testing and counseling to people with PD. By identifying genetic variants linked to PD, researchers can uncover new pathways for treatment — bringing the field closer to personalized medicine, where therapies can be tailored to a person’s genetic profile.
“There is a lot of hope in understanding Parkinson’s through genetics and leveraging study data to find the next disease modifying treatment,” said Evelyn.
Patience, Perseverance and Continued Progress
Every person with PD experiences unique symptoms and disease progression. These differences can be related to genetics, environment, age or other factors, all of which make finding new, effective disease-modifying therapies for PD a daunting task.
As PD research moves forward, the involvement of the PD community is invaluable and critical. Groups like PECPR and Parkinson’s Foundation research advocates ensure that the experiences of those with PD guide treatment development in ways most beneficial to the PD community.
“It’s an exciting time to see so many researchers and industry partners wanting to listen and learn from those living with Parkinson’s,” said Evelyn. “That’s what community engagement is all about — it’s a collaborative process where we combine our experience and expertise to improve the health of those living with Parkinson’s. That’s what will lead us to a cure for PD”
Learn More
The Parkinson’s Foundation works to improve care for people with PD and advance research toward a cure.
Discover how we are working to close gaps in knowledge about PD: Advancing Research
Learn about PD GENEration: our global genetics study that provides genetic testing and counseling at no cost for people with Parkinson’s.
Parkinson’s disease (PD) affects each person differently, but it typically progresses slowly over time. As your symptoms change, you may need to rely on more support and care. There are many options to help manage these changes, based on your needs, preferences and resources.
When is it time to get more help?
Start by having open and regular conversations with loved ones and your care team. Discuss everyone's needs, what's working well, where things are getting harder and any safety concerns. Signs that extra help may be needed include difficulty with daily tasks, falls, changes in behavior and thinking or care partner fatigue. The goal is to find a balance that keeps you safe and supports the best quality of life.
Key Questions When Considering Care:
Is staying active or social difficult?
Are treatments hard to manage?
Are daily tasks like getting out of bed or bathing a struggle?
Do you need help with transportation?
Is the care partner feeling stressed, at risk of burnout or in need of respite?
Does the care partner have health issues?
Are there safety concerns, such as falls, getting lost, or managing medications?
Is getting around your home challenging due to stairs or other barriers?
Care Options
Knowing your choices and planning ahead can help make it easier to navigate changes as they come up.
Home-Based Support
Services that can help support a person living at home include:
Family & Friends —Depending on ability and availability, may help with household tasks, personal care, medications, driving and support
Meal & Transportation Services — Meal delivery, rides to appointments
Personal Care Aide, Homemaker & Companion Care — Help with errands, housekeeping, daily living activities like dressing and bathing, medication reminders, meal prep and companionship
Short-Term Skilled Care — Short-term nursing care and therapy (must be homebound and medically necessary for insurance coverage)
Adult Day Programs — Social activities, meals, care during the day
Respite Care in Residential Settings — Short-term overnight stays
Care Communities
Housing options that offer different levels of support include:
Independent Living — Activities, meals, housekeeping
Assisted Living — Help with daily activities, medication management, dining services, wellness programs, social opportunities, transportation
Residential Care Homes — Smaller home settings with 24/7 support from care staff and on-call nursing
Skilled Nursing — 24/7 care for more complex needs and rehab
Continuing Care Retirement Community — A range of care from independent to skilled nursing
Dementia Care — Available in some assisted living and skilled nursing facilities, includes memory support and specialized care
Parkinson's-Specific Care
Finding care with staff experienced in PD can be difficult. Be sure to ask if the care team offers support for movement challenges, medication management, mood changes and whether exercise and rehab are available on-site.
The Parkinson's Foundation Community Partners in Parkinson's Care program trains care staff to support the complex needs of people with PD. Contact our Helpline to explore local resources, including any participating sites in your area. For more information, visit Parkinson.org/CommunityPartners.
Paying for Care
Medicare and private insurance do not cover many of the costs associated with care. Depending on your situation, Medicaid, Veterans benefits or long-term care insurance may be available to help. An elder law attorney and financial planner with expertise in long-term care planning can help you understand your options.
Tips for Finding Local Care Resources
Ask your support network for recommendations, including family, friends, members of your support group and care team.
Do your research. Review background checks, references and online reviews. Arrange tours and interviews and invite a friend or family member for support.
Rely on trusted organizations, like the Parkinson's Foundation and your local Area Agency on Aging, for guidance and resources.
Parkinson’s disease (PD)research has changed drastically over the last few decades. In the past, scientists approached PD research more broadly, often applying general neurological concepts rather than focusing specifically on the unique aspects of PD itself. Today, the field has advanced to include more specific treatmentsand interventions tailored to address the symptomsand underlying causes of PD directly, offering new possibilities for more effective careand management.
Dr. James Beck, Chief Scientific Officer of the Parkinson’s Foundation, alongside a few of the Parkinson’s Foundation research grantees discuss the advancements in PD research, how the field has transformed and where it is headed in the future.
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 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.
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.
