Ceceilia LaValle’s family and friends knew her as the life of any party — an entrepreneur, a great artist, a wonderful cook, a devoted sister, wife and mother.
“She was an integral figure in our family and had so much enthusiasm for life,” said Neilia LaValle, one of Ceceilia’s younger sisters.
When Cecelia was diagnosed with Parkinson’s disease (PD) in the early 1990s after noticing rigidity in her left arm, she leaned into her passions and was determined to live life to the fullest as she bravely fought PD.
She had already been diagnosed with PD by the time she met her fourth husband, and ultimate care partner, Jimmie Amox, while they were enrolled as graduate students at Louisiana Tech University. Though she made several careers for herself, art always drew her back in.
“Her art really blossomed during her graduate studies,” said Deanna LaValle High, one of Ceceilia’s younger sisters. “I would say that Cecelia was at the peak of her artistic capability and showing every sign of continuing to grow as an artist, when she was diagnosed with Parkinson's. She continued to make art until the disease finally robbed her of that ability.”
Cecelia’s family rallied around her, researching PD and supporting her as she explored treatment options. Jimmie said she was determined to continue living her life and was invested in finding PD care that allowed her to do so. She consulted with several doctors around the world and tried many treatments to alleviate her symptoms, including the hallucinations.
“I lost my mom long before she passed away, due to the hallucinations,” said Michele Smith, Cecelia’s daughter. “It was difficult for our family to watch her deteriorate.”
Before Cecelia passed away in 2016, Neilia spoke to a friend who had recently started her own non-profit to raise money for breast cancer, which inspired Neilia to do the same and support a cause near to her heart — Parkinson’s disease.
“Seeing what my sister was going through made me want to help find a cure for Parkinson’s,” Neilia said. “I don’t want other people to go through what my family and my sister went through.”
Neilia uses her foundation to support organizations like the Parkinson’s Foundation that are working to find a cure for PD. She’s proud to honor her sister and to continue her fight for a cure.
“It seems like more and more people are directly impacted by Parkinson’s. We need to get more people actively involved in supporting organizations that are looking for a cure, like the Parkinson’s Foundation. There is hope, and that is what we need to use to keep us going.”
- Neilia LaValle
“Many of the current treatments and resources available now were not available when Cecelia was diagnosed,” said Jimmie. “Organizations like the Parkinson’s Foundation have changed that. If I could offer advice to those newly diagnosed with Parkinson's disease or people entering the Parkinson's care partner world, I would say that the first thing you need in your toolbox is love for each other. Grow that love every day. Get to truly know each other and constantly question reactions to new experiences with this disease.”
“If you are new to Parkinson’s, take stock of yourself and your priorities,” said Deanna. “And, if you are inclined to live life fully like Cecelia, do it, do it, do it. As best you can.”
With your support, we can invest in research that will help us find new treatments and a cure for Parkinson’s in years, not decades. To make a donation, visit Parkinson.org/Donate.
Episode 180: Make Every Minute Count: Optimizing Your Parkinson’s Doctor Visits
Medical appointments can feel overwhelming – there may be many questions on your mind and not enough time to address everything with your doctor. Preparing a list of questions and concerns ahead of time can help you focus on what matters most to you and ensure you’re actively advocating for your care. To support this process, the Parkinson’s Foundation created a worksheet that offers a step-by-step guide for identifying and prioritizing your top concerns.
Advocating for yourself during appointments can be challenging, and at times, uncomfortable. Speaking up is essential to make sure your top needs are heard and addressed. In this episode, we speak with Dr. Taylor Rush, a Health Psychologist and director of Behavioral Services and Interdisciplinary Programs at the Cleveland Clinic in Ohio. She shares her recommendations for how to prepare before, during, and after a visit with your Parkinson’s doctor, take a proactive role in managing your care, and access helpful resources to support you throughout your Parkinson’s journey.
Released: June 24, 2025
About Taylor Rush, PhD
Dr. Taylor Rush is a Clinical Health Psychologist at the Cleveland Clinic’s Center for Neurological Restoration. She graduated with a Bachelor of Science degree in psychology from the University of Florida, a Master of Arts degree in clinical psychology from the Forest Institute and a PhD in clinical health psychology from East Carolina University. She has been on staff with the Cleveland Clinic since 2015 and is a Clinical Assistant Professor of Medicine in the Lerner College of Medicine at Case Western Reserve University. Currently, she serves as Director of Behavioral Health Services, leading a team that supports patients with Parkinson’s and other movement disorders. Dr. Rush helps individuals adjust to diagnosis, manage depression and anxiety, improve communication, prepare for surgery like DBS, and incorporate mindfulness to support emotional and physical well-being.
Take Charge: Self-Advocacy Strategies to Make the Most of Healthcare Visits
For many people with Parkinson’s disease (PD) healthcare appointments with a specialist are often far apart, short on time and packed with information. Learning to be an active member of your care team — prioritizing your concerns, questions and needs before and during every healthcare appointment — can help you optimize the value of each visit.
Because no two people experience Parkinson’s the same way, diagnosis and treatment can be complex.Further, accessing expert Parkinson’s care can be difficult. While more than one million people in the U.S. live with PD, research shows that there are less than 700 neurologists trained in movement disorders nationwide. Most of these specialists are concentrated in urban areas, and it can take several months to get an appointment.
Parkinson’s visits can be fast-paced, heavy on information and the gap between appointments can be significant. The priorities you want to cover might be different than those your doctor plans to discuss. It can be frustrating to leave an appointment without talking through your top concerns or fully understanding your doctor’s recommendations. Taking an active approach to your healthcare can address this frustration and help you get more out of each appointment.
Parkinson’s care is a partnership. Your healthcare team brings medical expertise to the relationship while you bring your own expertise — your unique experience living with Parkinson’s and the knowledge of what is most important to your daily life and well-being. You know how Parkinson’s is getting in the way of the things you want or need to do.
“Remember, you are the one going through the process, so you're the expert on what your experience is — your healthcare team relies on you to share what your concerns may be and what the priorities will be,” said Dr. Nashatizadeh.
Active Participation is Key to Empowered Care
Self-advocacy — understanding what you need, gathering information to make good choices and speaking up for yourself — is a skill; one that gets stronger with practice. Research shows people who speak up about their needs and actively participate during their healthcare appointments experience improved outcomes, increased satisfaction and more cost-efficient healthcare.
“Self-advocacy matters because you are the only consistent member of your healthcare team. You are present throughout your journey, not just during the clinical visits but between the visits,” said Dr. Blake, who is living with Parkinson’s.
Think about what symptoms or challenges you are facing. Do you have concerns about how Parkinson’s impacts your health, relationships or hobbies? Write down the top three things you want to address with your doctor. Consider sharing those priorities with a care partner or family member who may offer valuable insight.
Exploring evidence-based educational resources about your symptoms or concerns beforehand can make your appointment more meaningful.
When you begin an appointment with what matters most to you, your healthcare team can use your needs to guide care decisions.Mention outstanding concerns or questions from your last visit.While the complexity of Parkinson’s can make it hard to know if a health concern is PD-related, it is important to be open and honest.
Before you leave, be sure you understand the details of any recommendations your doctor has made or whether there is anything to watch for with a new medication or therapy. Request referrals to any outside resources or support you need.
Explore Building Your Care Team to become familiar with the specialists who can help address PD symptoms and improve quality of life.
Managing Parkinson’s symptoms often requires taking a team approach — working with different types of experts to address your needs as they arise. Getting and staying organized can help you manage medications, care recommendations and appointments with other specialists. Maintain and regularly update a list of your current medications to share with your healthcare providers at every visit.
This is also a good time to get engaged. If you don’t have an exercise routine, find an activity you love and begin to work it into your daily schedule. Try connecting with other others. Exploring local PD resources or joining a support group can help you build community.
Get the Parkinson’s Foundation Hospital Safety Guide to discover personal care forms and medication schedules.
More Tips for Optimizing Your Care
If you are comfortable including someone, bringing a companion to healthcare visits can be invaluable. Discuss roles before the appointment, so your companion or care partner knows how you prefer them to participate. Participation can help your companion gain a deeper understanding of Parkinson’s. They may also be able to take notes, share unique insights or help you follow through with any recommendations.
While movement symptoms can take center-stage at a PD appointment, Parkinson’s impacts more than movement. Mention any non-movement symptom concerns to your doctor. Anxiety or depression, common in Parkinson’s, can impact your ability to follow through on treatment recommendations. Talk to your neurologist about persistent feelings of sadness or worry.
“Mood should certainly not be discounted or minimized because it's not a motor symptom,” said Dr Rush. “It affects motor symptoms, it affects quality of life, and it affects relationships and functioning.”
Finding the right provider can be a process. If you feel like your healthcare provider isn’t hearing you or addressing your needs, or you leave appointments frustrated, it’s important to take action.
Try addressing your concerns by:
Expressing your needs and expectations at the beginning of each appointment. Bring a written list of your top three discussion topics or ask your doctor about sending your list through the patient portal ahead of your next visit.
Having a friend in your corner. Consider asking a companion to support you or to help explain the details of how PD symptoms, challenges or care needs are impacting you.
Calling the Parkinson’s Foundation Helpline. Our Helpline team can help you prepare ahead of a visit, brainstorm solutions to challenges, or help you explore other care options.
Ganando terreno: La búsqueda por mejorar e introducir nuevos medicamentos contra el Parkinson
El bioquímico Kevin McFarthing recuerda todo acerca de su diagnóstico de la enfermedad de Parkinson (EP). "Me lo diagnosticaron a las 4 p.m. del 10 de diciembre de 2012", dijo. Desde entonces, ha estado tras la pista de una cura, catalogando potenciales terapias contra el Parkinson como coeditor de Clinical Trial Highlights, Journal of Parkinson's y organizando a lista Parkinson's Hope List, una base de datos de más de 350 estudios en curso.
El Parkinson va en aumento. Un estudio apoyado por la Parkinson's Foundation reveló que 90,000 personas en los EE.UU. son diagnosticadas con la enfermedad cada año. Para 2040, más de 12 millones de personas en todo el mundo vivirán con la EP. Las compañías farmacéuticas están interesadas en acelerar una cura. La identificación de nuevas terapias contra el Parkinson es una de las principales prioridades de la investigación y el desarrollo farmacéuticos.
"Todos tenemos nuestra propia visión de lo que podría significar la cura", dijo el Dr. McFarthing. Para algunos, podría ser "una solución mágica para resolver los síntomas y devolver nuestras capacidades a como éramos antes". Otros podrían esperar "un fármaco que brinde otros 10 años de vida sin síntomas".
Los desafíos
Aunque las compañías farmacéuticas están buscando terapias avanzadas para el Parkinson, los costos son elevados y la competencia por la financiación es fuerte. Innumerables medicamentos de prueba fracasan a menudo en el camino hacia un fármaco de éxito para el sistema nervioso central, como la levodopa (la actual terapia de primera línea contra el Parkinson, descubierta hace más de 50 años).
Según el Centro Tufts para el Estudio del Desarrollo de Medicamentos, una terapia para el sistema nervioso central puede costar más de $2 mil millones en investigación y tardar casi un 20% más que otros fármacos en desarrollarse.
El Parkinson es complejo. Los síntomas se manifiestan de forma diferente en cada persona, lo que dificulta un enfoque único para el tratamiento farmacológico. La participación en la investigación es esencial para descubrir las causas de la enfermedad y encontrar nuevos tratamientos para los síntomas que la gente ve —incluyendo el temblor, la rigidez y la lentitud de movimientos— y los diversos no motores que acompañan a la EP.
Investigaciones diversas y la inversión continua también son esenciales. Por suerte, como señala el Dr. McFarthing, "se está realizando mucho trabajo".
En todo el mundo hay más de 100 estudios que exploran formas de mejorar diversos síntomas de la EP. Más de 250 estudios están investigando posibles terapias modificadoras de la enfermedad, tratamientos que podrían ralentizar, detener o invertir el avance de la enfermedad.
Sacando nuevos tratamientos a la luz
Tras identificar un nuevo tratamiento prometedor para una enfermedad mediante estudios observacionales, animales o celulares, los investigadores buscan financiación y participantes para ensayos clínicos. Estos ensayos, cuidadosamente supervisados, se realizan por fases, —normalmente probando un agente activo frente a un placebo—, para determinar su seguridad y eficacia. Por lo general, una terapia prospectiva debe superar con éxito las fases 1, 2 y 3 antes de que la Administración de Alimentos y Medicamentos de los EE.UU. (Food and Drug Administration o FDA, por sus siglas en inglés) decida si una empresa puede presentar una solicitud de nuevo fármaco.
Algunos de los estudios de tratamiento a tener en cuenta son:
Terapias para la discinesia(movimientos involuntarios, erráticos y retorcidos), dirigidas a los efectos secundarios asociados al uso prolongado de la levodopa:
Celon Pharma S.A. obtuvo resultados positivos de fase 2 con su CPL'36 oral, de una sola toma al día. El fármaco dificulta la actividad de la enzima fosfodiesterasa 10a, aumentando los niveles cerebrales de ciertos mensajeros químicos para mejorar el control motor.
Tras finalizar los ensayos de fase 2B, el mesdopetam (IRL790) de IRLAB no alcanzó los criterios de valoración primarios. Los investigadores siguen evaluando su potencial terapéutico. El fármaco bloquea la actividad del receptor D3 de la dopamina, que puede estar relacionado con la discinesia inducida por la levodopa.
La fase 1 de investigación del AV-101 de Vistagen está en curso. El fármaco actúa sobre los receptores de N-metil-D-aspartato (NMDA) que tienen fallas. Unos receptores sanos son fundamentales para la comunicación entre las células nerviosas del cerebro.
Se espera que Sinopia Biosciences inicie los ensayos clínicos de un candidato preclínico a fármaco contra la discinesia: el SB-0110.
Este fármaco maximiza el tiempo en “on”, el periodo en que la levodopa proporciona el máximo control de los síntomas. A medida que progresa el Parkinson, la persona puede experimentar más tiempos en “off". Las terapias destinadas a prolongar el tiempo en "on" incluyen:
Vyalev (Produodopa en Europa), disponible en los EE.UU. desde 2024. Esta nueva formulación de levodopa está dirigida al Parkinson avanzado. Una bomba portátil administra una infusión constante de medicamento bajo la piel, proporcionando un control más constante de los síntomas. Vyalev también puede mejorar la calidad del sueño, los tiempos en "off" a primera hora de la mañana y otros síntomas.
Tavapadon estimula determinados receptores de dopamina para mejorar la función motora y reducir los efectos secundarios. Los agonistas dopaminérgicos actuales no son selectivos y los efectos secundarios pueden incluir comportamientos compulsivos y alucinaciones visuales. Tavapadon proporcionó un buen control de los síntomas en los ensayos de fase 3 como medicación independiente y cuando se utilizó junto con la levodopa. El fabricante, AbbVie, tiene previsto presentar este año una solicitud de nuevo fármaco a la FDA.
La investigación con células madre es un desafío. Implica cirugía cerebral y, tras la implantación de células, se necesita tiempo para ver si los síntomas mejoran. A pesar de los numerosos estudios con células madre para el Parkinson, los investigadores no habían pasado de la fase 2 hasta hace poco:
BlueRock Therapeutics, una división de Bayer, presentó datos positivos de fase 1 sobre bemdaneprocel, una terapia celular que busca sustituir las neuronas productoras de dopamina que se pierden a causa del Parkinson. Con base en estos datos, la FDA concedió al fármaco la designación de terapia avanzada de medicina regenerativa, permitiéndole pasar a los ensayos de fase 3 a principios de 2025.
Algunas de las terapias en investigación prometedoras para detener o frenar la progresión de la EP son:
Factores de crecimiento neurotróficos, moléculas que estimulan el crecimiento de los nervios. Estos podrían beneficiar a las personas con Parkinson. El AB-1005 de AskBio, un factor neurotrófico derivado de una línea celular glial (GDNF, por sus siglas en inglés) administrado directamente al cerebro, puede minimizar la pérdida de dopamina asociada al Parkinson.
Beneficios neuroprotectores potenciales del factor neurotrófico derivado del cerebro y del factor neurotrófico dopaminérgico cerebral.
Los inhibidores de la proteína inflamasona NLRP3 pretenden bloquear la activación de moléculas inflamatorias relacionadas con la pérdida de dopamina en el Parkinson.
Posibles beneficios neuroprotectores de la nicotinamida ribósida, una forma de la vitamina B3.
Los investigadores también están explorando formas de prevenir la acumulación de la proteína alfa-sinucleína, la proteína que forma cúmulos tóxicos, llamados cuerpos de Lewy, en el cerebro de las personas con la EP:
Los estudiso de fase 2 de prasinezumab de Roche, dirigidos a la acumulación y propagación de la alfa-sinucleína. El estudio no alcanzó su objetivo, pero la compañía planea buscar datos que potencialmente muestren beneficios del prasinezumab en el Parkinson inicial.
Annovis Bio Fase 3 concluyó recientemente los estudios sobre buntanetap, un fármaco que reduce la producción de alfa-sinucleína. Buntanetap no alcanzó los objetivos del estudio. No obstante, la empresa tiene previsto seguir investigando el fármaco.
Las mutaciones en el gen GBA (que produce la enzima glucocerebrosidasa, o Gcase) son uno de los más frecuentes factores genética de riesgo de la EP. Varias empresas están investigando si los compuestos que estimulan la actividad Gcase pueden mejorar la función motora u ofrecer neuroprotección.
Se ha demostrado que el Ambroxyl, un medicamento para la tos utilizado para reducir la flema, aumenta la actividad de la Gcase en personas con Parkinson. Puede eliminar los cúmulos tóxicos de alfa-sinucleína. Está en marcha un ensayo de fase 3.
Las mutaciones del gen LRRK2 son la causa más frecuente de la EP genética. Estudios de investigación en cuatro empresas están explorando cómo los inhibidores de la LRRK2 podrían aportar beneficios neuroprotectores. Otras cinco empresas están en fase de ensayos clínicos.
Otras posibles terapias modificadoras de la enfermedad son losagonistas del GLP-1. Principalmente desarrollados para controlar la diabetes, los agonistas del GLP-1 imitan la hormona humana péptido-1, similar al glucagón (GLP-1), que controla el azúcar en sangre y el apetito. Algunos delos estudios recientes sobre agonistas del GLP-1 son:
Terapia con lixisenatida. Los participantes con la EP inicial en el ensayo de fase 2 experimentaron una menor progresión de la discapacidad motora que el placebo a los 12 meses. Sin embargo, muchos participantes experimentaron efectos secundarios gastrointestinales.
La liraglutida mostró una mejoría significativa en algunos síntomas no motores, pero ninguna diferencia en los síntomas motores durante el estudio de fase 2.
La investigación de fase 3 sobre la exenatida demostró que el fármaco era seguro y bien tolerado, pero no mostró ninguna ventaja sobre el placebo en el Parkinson.
Las investigaciones de fase 2 de NLY01, exenatida modificada, no mostraron mejorías en los síntomas del Parkinson.
Los investigadores están a la espera de los resultados de un estudio clínico de fase 2 del Hospital Universitario de Oslo que explora el valor potencial de la semaglutida en el Parkinson.
Construir sobre la esperanza
La única manera de acelerar el desarrollo de tratamientos que puedan ralentizar o detener el Parkinson es a través de una financiación amplificada y continua. El Fondo de Biotecnología Virtual para el Parkinson (Parkinson's Virtual Biotech) , una asociación entre la Parkinson's Foundation y Parkinson's UK, financia 11 nuevos medicamentos y terapias bajo investigación y desarrollo.
La iniciativa Edmond J. Safra Accelerating Clinical Treatments for Parkinson's Disease (EJS-ACT PD, por sus siglas en inglés) tiene como objetivo acelerar las terapias de prueba de fármacos seguros utilizando diseños de ensayos multibrazo y multietapa (MAMS, por sus siglas en inglés), un enfoque más novedoso y rentable.
Los ensayos MAMS permiten a los investigadores evaluar varios tratamientos a la vez contra un placebo. Los investigadores pueden descubrir lo que funciona y descartar lo que no, sin tener que desmontar un ensayo y empezar de nuevo. El objetivo es facilitar una transición fluida y rentable a la siguiente fase de los ensayos y comercializar más rápidamente nuevas terapias eficaces. Hay otros ensayos MAMS para Parkinson en marcha en todo el mundo.
"Esperamos tener más fracasos que éxitos debido a la naturaleza de lo que intentamos hacer", dijo McFarthing. "Pero creemos que algo resultará de esto".
Cómo participar en la investigación sobre el Parkinson:
This guide is designed for veterans with Parkinson’s disease (PD) and their care partners. It covers frequently asked questions about Parkinson’s, as well as the specialized care and benefits available to many veterans through the U.S. Department of Veterans Affairs (VA). Inside, explore essential information about PD, tips for living well, an overview of resources and how to access support.
Fueling Discovery: 9 Research Projects Funded by Parkinson’s Foundation Grants
Taking on a disease as complex as Parkinson’s disease (PD) requires the best scientific minds in the world and the ability to fund innovative ideas. The next Parkinson’s research breakthrough can happen in any lab, at any time. Parkinson’s Foundation research grants exist to decipher this disease and find new ways to stop it from progressing.
“Many of our grant-funded researchers pursue high-risk projects unlikely to receive federal funding. These projects push the envelope of research and are the kinds of projects the Parkinson’s community eagerly awaits — those that explore the potential for new treatments based on the science behind Parkinson’s,” said James Beck, PhD, Chief Scientific Officer at the Parkinson's Foundation.
Explore nine Parkinson’s Foundation-funded studies below divided into three critical research avenues:
New movement symptom treatments.
How gut bacteria and PD are related.
How aging impacts PD development and progression.
Go in depth into each study below:
Investigating how gut bacteria play a role in PD
1. Searching for gut bacteria that may lead to PD.
Chris Smillie, PhD, recipient of a Parkinson’s Foundation Impact Award, is using cutting-edge genetic techniques to find bacterial cells associated with PD, identify how their activity and function may contribute to the disease and how we might be able to target gut bacteria to slow, stop or prevent disease progression.
2. How gut bacteria influence levodopa effectiveness.
Christine Olson, PhD, recipient of a Parkinson’s Foundation Launch Award and a previous Postdoctoral Fellow, is researching a certain type of bacteria in the gut she suspects may impact the effectiveness of levodopa. She’s also investigating whether there are ways to use targeted antibiotics to improve levodopa use.
3. Exploring gut health biomarkers as early indicators for PD.
Trisha Pasricha, MD, recipient of a Parkinson’s Foundation Impact Award, aims to compare the gut biology of people with and without Parkinson’s using new technology to discover the biomarkers of PD-linked bloating and nausea to improve future diagnoses.
Jeroen Habets, MD, PhD, recipient of the Parkinson’s Foundation Postdoctoral Fellowship, is working to identify brain wave “biomarkers” of levodopa-induced dyskinesia (LID), highlighting regions of the brain that go awry during LID and could be targeted by magnetic stimulation therapy to reduce or eliminate LID completely.
Studying how aging impacts PD development and progression
7. Boosting brain immune cells as a new preventative PD therapy.
Rebecca Wallings, PhD, recipient of a Parkinson’s Foundation Launch Award, is investigating how aging impairs a certain type of immune cell outside the brain — and how this impairment impacts cells within the brain that contribute to the development of PD.
9. Untangling the connections between inflammation, aging and PD.
Sarah Talley, PhD, recipient of the Parkinson’s Foundation Postdoctoral Fellowship, is studying how “inflammaging,” age-related inflammation, may worsen the spread of alpha-synuclein clumps in brain, with the hope of better understanding how anti-inflammatory therapies could be used to treat people with PD.
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) usually progresses slowly over time. As needs increase, different types of care can help support daily life.
When is it time to get more help?
Talk regularly with loved ones and your care team. Share what is going well, what is becoming more difficult and any safety concerns. You may need more help if your symptoms begin to affect safety or daily activities, or if care partners feel overwhelmed. The goal is to match your needs with the right amount of care.
Signs You May Need More Help:
Staying active or social is difficult
Treatments are confusing or hard to keep up with
Daily tasks like getting out of bed or bathing are no longer safe alone
You need help getting to appointments or errands
The care partner feels worn down or has health concerns
There are safety concerns, such as falls, getting lost or medication mix-ups
It's hard to move safely around your home
What care options are available?
Support can take place in different settings as needs change. The tables below show services that support living at home and housing with added support.
Home-Based Support
Care partners, Family & Friends — May help with household tasks, personal care, medications, driving and support
Meal & Transportation Services — Meal or grocery delivery, rides to appointments, shopping or social activities
Personal Care Aide, Homemaker & Companion Care — Help with errands, housekeeping, daily living activities like dressing and bathing, medication reminders, meal preparation and companionship
Short-Term Skilled Care — Nursing care or therapy at home for a medical need, often for a few weeks after an illness or injury
Adult Day Programs — Supervised daytime programs with meals, activities and care outside the home
Respite Care in Residential Settings — Short stays in a care facility for temporary care
Housing Options with Added Support
Independent Living — Private housing with meals, activities and housekeeping
Assisted Living — Housing with help for daily tasks, medications, meals and activities
Residential Care Homes — Small home settings with 24/7 care staff and on-call nursing
Skilled Nursing — 24/7 nursing care for serious medical needs or rehabilitation
Continuing Care Retirement Community — A range of living options with increasing levels of care in one place
Memory Care — Support for memory and thinking changes, often within assisted living or skilled nursing
Parkinson's Care
Look for care teams with Parkinson's experience. Ask about staff training, services and support for daily needs.
The Parkinson’s Foundation Community Partners in Parkinson’s Care program trains care staff to support people living with PD. Contact the Helpline for participating organizations and to learn about other local resources.
Paying for Care
Medicare and private insurance do not cover many long-term care costs. Medicaid, Veterans benefits or long-term care insurance may help. An elder law attorney or financial planner can help you understand your options. To find a certified elder law attorney, visit Naela.org or contact your local Area Agency on Aging.
Tips for Finding Local Care Resources
Ask your support network for recommendations, including your family, friends, support group and care team.
Research care options. Check references and reviews. Arrange tours or interviews and bring someone with you.
Rely on trusted organizations, like the Parkinson's Foundation and your local Area Agency on Aging.
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.
