Videos & Webinars

Expert Briefing: Complementary Therapies & Functional Medicine in Parkinson's Care

November 12, 2025

Managing Parkinson’s disease (PD) symptoms goes beyond traditional medications, with complementary therapies and holistic approaches offering additional support. This program introduces participants to non-drug options—such as massage, acupuncture, red light therapy, and CBD—that can help relieve symptoms and enhance daily well-being. By exploring functional medicine's focus on root causes and whole-body wellness, participants will gain a deeper understanding of how these therapies can address symptoms and improve overall quality of life, providing a more balanced and individualized approach to PD management.

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Presenter

Britt A. Stone, MD
Assistant Clinical Professor, Clinical Director — Vanderbilt Neurology Main Campus Clinics
Medical Director — Parkinson's Foundation Center of Excellence
Division of Movement Disorders, Department of Neurology, Vanderbilt University Medical Center

Videos & Webinars

Expert Briefing: Tremor, Shakes, & Everything in Between

Tremor, Shakes, & Everything in Between: Parkinson's Motor Symptoms

March 11, 2026

Motor symptoms are among the most recognizable aspects of Parkinson’s disease. From tremor and rigidity to dystonia, dyskinesia, and changes in posture and gait, these symptoms can affect daily life in unique ways. We will explore the wide spectrum of motor symptoms, how they evolve, and strategies for managing them.

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Presenter

Pablo Coss, MD
Assistant Professor of Neurology, UTH San Antonio
Movement Disorders Specialist
Director, HDSA Center of Excellence, San Antonio
UT Health San Antonio

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Find Real Answers

Find real answers

A Parkinson’s disease (PD) diagnosis brings endless questions. Questions that evolve as the disease and your ability to cope evolve. This April, for Parkinson’s Awareness Month, we want to help people find real answers when it comes to Parkinson’s.

When Parkinson’s gets real, the Parkinson’s Foundation is here to help you find real answers. We offer trusted, accessible support through our Helpline, website, social media and our new AI chat feature: Ask PAM.

Here are some of the top questions and answers people have about Parkinson’s:

What are the early signs of Parkinson’s?

Early signs of Parkinson’s can be subtle. While movement symptoms like tremors, stiffness and trouble with balance are the most noticeable, early signs also include a change in handwriting, loss of smell, trouble sleeping and vertigo. Learn all 10 early signs of PD.

What do you do after noticing early signs?

No one symptom means you have Parkinson’s. If you have several symptoms, consider seeing your primary doctor, then asking for a referral to a neurologist, or ideally, a movement disorders specialist (a specialized neurologist). Keep reading on this topic.

How is Parkinson’s diagnosed?

Parkinson’s is diagnosed based on observation — a doctor assesses medical history, current symptoms and a physical exam. No single lab or test confirms a diagnosis, though certain tests can help rule out other conditions. Learn more about getting diagnosed.

What causes Parkinson’s?

Scientists believe a combination of genetic and environmental factors are the cause of Parkinson’s. Genetics contribute to 10–15% of PD cases, with specific gene mutations linked to the disease. Learn more about this topic.

How do you manage Parkinson’s symptoms?

The most obvious symptoms of PD are called movement symptoms. Parkinson’s is called a movement disorder because it causes tremors, slowing and muscle stiffness. However, non-movement symptoms are common and can be more troublesome and disabling than movement symptoms for many people with Parkinson’s. These can include depression, anxiety, sleep issues and more.

Treatment often includes medications specific to your needs. The medication Levodopa is the most effective treatment for movement symptoms as it converts to dopamine in the brain. Treatments also include things that you do yourself such as exercise and rehabilitative therapies, such as physical or speech therapy.

Is there a cure for Parkinson’s?

While there is no cure for Parkinson’s, treatments can effectively manage symptoms. Medication, exercise and rehabilitative therapies help maintain mobility, balance and mental health. The Parkinson’s Foundation also funds research to advance better treatments and move us closer to a cure. Explore ongoing PD research.

Can you live a long life with Parkinson’s?

Yes. Parkinson’s symptoms and rate of progression are unique for every person living with the disease. Navigating PD involves building a care team with specialists who can address symptoms as they occur, building a support network and staying active.

Find nearby exercise classes and support groups through your nearest Parkinson’s Foundation Chapter. 

3 Ways to Find Real Answers to PD Questions

  1. For immediate answers based on Parkinson’s Foundation information and articles, try our new AI-powered chat tool, Ask PAM (Parkinson’s Assistance Messenger). Ask PAM now.
  2. Call our Helpline at 1-800-4PD-INFO (1-800-473-4636) to speak with an information specialist for personalized answers.
  3. Explore Parkinson.org for tailored resources and information on the PD topics that matter most to you right now.

The Parkinson’s Foundation mission to help people live better with Parkinson’s continues strong year-round. Here are some ways you can help us raise PD awareness right now:

Get more answers and help us raise Parkinson’s awareness on our Find Real Answers page.

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Encuentre respuestas reales

Encuentre respuestas reales

Un diagnóstico de la enfermedad de Parkinson (EP) suele ir acompañado de una interminable lista de preguntas. Preguntas que evolucionan al ritmo de la enfermedad y de su capacidad para afrontarla. Este mes de abril, con motivo del Mes de la Concientización sobre el Parkinson, queremos ayudar a las personas a encontrar respuestas reales cuando se trata del Parkinson.

Cuando el Parkinson se vuelve real, la Parkinson's Foundation está para ayudarle a encontrar respuestas reales. Ofrecemos asistencia confiable y accesible a través de nuestra Línea de Ayuda, nuestro sitio web, las redes sociales y nuestra nueva función de chat con inteligencia artificial (IA): Ask PAM (pregúntele a PAM).

Estas son algunas de las preguntas y respuestas más frecuentes que hacen las personas sobre el Parkinson:

¿Cuáles son los signos tempranos del Parkinson?

Los primeros signos del Parkinson pueden ser sutiles. Si bien los síntomas motores, como temblores, rigidez y problemas de equilibrio, son los más evidentes, los primeros signos también incluyen cambios en la escritura, pérdida del olfato, problemas para dormir y vértigo. Conozca los 10 signos tempranos de la EP.

¿Qué hacer cuando se notan los primeros signos?

Ningún síntoma por sí solo significa que tenga Parkinson. Si tiene varios síntomas, considere ver a su médico de cabecera y, luego, pedir que lo mande a un neurólogo o, en el mejor de los casos, a un especialista en trastornos del movimiento (un neurólogo especializado). Siga leyendo sobre este tema.

¿Cómo se diagnostica el Parkinson?

El diagnóstico del Parkinson se basa en la observación: el doctor evalúa el historial médico, los síntomas actuales y un examen físico. Ningún laboratorio o prueba por sí solo confirma un diagnóstico, aunque ciertas pruebas pueden ayudar a descartar otras afecciones. Aprenda más acerca del diagnóstico.

¿Qué causa el Parkinson?

Los científicos creen que la causa del Parkinson es una combinación de factores genéticos y ambientales. La genética contribuye a un 10-15% de los casos de la EP, con mutaciones genéticas específicas vinculadas a la enfermedad. Aprenda más acerca de este tema.

¿Cómo se manejan los síntomas del Parkinson?

Los síntomas más evidentes de la EP se llaman síntomas motores. El Parkinson se llama trastorno del movimiento porque provoca temblores, movimientos lentos y rigidez muscular. Sin embargo, los síntomas no motores son frecuentes y pueden ser más molestos e incapacitantes que los síntomas motores para muchas personas con Parkinson. Éstos pueden incluir depresión, ansiedad, problemas de sueño y más.

El tratamiento suele incluir medicamentos específicos para sus necesidades. El medicamento Levodopa es el tratamiento más eficaz para los síntomas motores, ya que se convierte en dopamina en el cerebro. Los tratamientos también incluyen cosas que puede hacer usted mismo, como ejercicio y terapias de rehabilitación, como fisioterapia o terapia del habla y el lenguaje.

¿Existe una cura para el Parkinson?

Aunque el Parkinson no tiene cura, los tratamientos pueden manejar eficazmente los síntomas. Los medicamentos, el ejercicio y las terapias de rehabilitación ayudan a mantener la movilidad, el equilibrio y la salud mental. La Parkinson's Foundation también financia la investigación para impulsar mejores tratamientos y acercarnos a una cura. Explorar la investigación actual sobre la EP.

¿Se puede vivir mucho tiempo con Parkinson?

Sí. Los síntomas y el ritmo de progresión del Parkinson son únicos para cada persona que vive con la enfermedad. Navegar por la EP implica crear un equipo de atención con especialistas que puedan atender los síntomas a medida que aparecen, crear una red de apoyo y mantenerse activo.

Encuentre clases de ejercicio y grupos de apoyo cercanos a través del Chapter más cercano de la Parkinson’s Foundation. 

3 maneras de encontrar respuestas reales a preguntas acerca de la EP

  1. Para obtener respuestas inmediatas basadas en información y artículos de la Parkinson’s Foundation, pruebe nuestra nueva herramienta de chat impulsada por la IA, Ask PAM (Parkinson's Assistance Messenger, o mensajero de asistencia para el Parkinson). Pregúntele a PAM ahora.
  2. Llame a nuestra Línea de Ayuda al 1-800-4PD-INFO (1-800-473-4636), opción 3 para español, para hablar con un especialista en información y obtener respuestas personalizadas.
  3. Explore Parkinson.org/Espanol para obtener recursos e información personalizados acerca de los temas relacionados con la EP que más le interesan en este momento.

La misión de la Parkinson’s Foundation de ayudar a las personas a vivir mejor con Parkinson permanece fuerte todo el año. Estas son algunas formas en las que puede ayudarnos a generar conciencia acerca de la EP ahora mismo:

Obtenga más respuestas y ayúdenos a generar conciencia acerca del Parkinson en nuestra página encuentre respuestas reales. 

My PD Story

Benjamin Friedman headshot
Health Professionals

Benjamin Friedman, MD

I have always been involved in caring for people with Parkinson’s Disease (PD). I was fortunate to grow up surrounded by elderly relatives, including my grandfather, who was diagnosed with PD at a relatively early age.

I witnessed how important mobility was for my grandfather’s well-being and how my grandmother was a force in his life. She was his strongest advocate. One memory I have of her support is when she would have me take him to the local pool to work on his strength and balance in the water.

Later, I was privileged to support one of my uncles who also had PD. I remember how my aunt assisted him and how music was instrumental in his movement. Memories of him dancing with my cousin in the hospital hallway will always stay with me.

Look for Dr. Friedman in our new PSA aiming to help people find real answers to their Parkinson’s questions. 

As I started to think about my own career, I did not initially plan to have a career in medicine. I originally studied health policy and was interested in gerontology (the study of aging). I was exposed to the policy side, but I found that the work — while important — did not allow me the human connections that I enjoyed while working in college at an adult day care center.

Once I decided to go to medical school, I was drawn to physical medicine and rehabilitation where the focus was on restoration and maximizing function.

When I joined Shirley Ryan AbilityLab in 2018, the director of the Parkinson’s Disease & Movement Disorders (PDMD) Program asked if I would be one of the clinicians in the program, and I have been a part of the PDMD clinic ever since. Today, I serve as the medical director of the program, and I am proud to work with the PD community each day.

Our work in the PDMD Program is built on an interdisciplinary approach. Our team of physicians; physical, occupational and speech therapists; psychologists; and exercise physiologists all work together to identify customized personal recommendations for our patients.

We have a unique system with multiple levels of care: inpatient rehabilitation, day rehabilitation and outpatient care, as well as functional fitness classes to help meet this diverse population’s functional needs. We recognize that not everyone has the same level of support at home, and we tailor our care accordingly.

In addition to our clinical practice, we also collaborate on PD research at Shirley Ryan AbilityLab. We have rehabilitation outcome measures based on our extensive patient data. Together with Northwestern University’s neurologists and scientists, who have collected genetic data on people with PD, we are hoping to determine which patients with PD may respond well to exercise therapies versus those who may need an alternative approach.

Being able to tailor therapy based on a patient’s genetics is exciting for the future of PD treatment.

Outside the clinic, members of our team are involved in various PD organizations on local, national and international levels. We will be sending a team to the World Parkinson’s Congress this May.

Additionally, we have a team of patients and clinicians, called the “Parkinson’s Peak Performers,” who participate in Shirley Ryan AbilityLab’s SkyRise Chicago each year and recently participated in the Parkinson’s Revolution ride to raise funds for the Parkinson’s Foundation.

What keeps me motivated in my work are the relationships my team has built with our patients over time. We meet many of our patients early in their disease, and we collaborate with them to help maintain and optimize their function over the course of their PD progression.

Every patient and their care partners are unique and bring something special to each visit. Whether it be suggestions about our current programs or ones they would like to see in the future, we are fortunate to have an advisory board of patients and care partners who provide us with ideas and feedback.

Once again, I always go back to my childhood and how my grandmother cared for my grandfather with PD. She often said, “It’s about the quality of life, not just quantity.” I remember her mantra daily. It serves as a reminder to me that members of the PD community are resilient and always looking for ways to improve their quality of life.

Find expert PD care near you. Explore centers in our Global Care Network or contact our Helpline at 1-800-4PD-INFO (1-800-473-4636) or Helpline@Parkinson.org to build your care team and find tailored PD specialists.

Podcasts

Episode 188: Improving Safety and Parkinson’s Care in the Hospital

People with Parkinson’s disease (PD) are at a higher risk of being hospitalized and often face even greater challenges once admitted. Of the more than 1 million people living with PD in the US, nearly one third are hospitalized each year. During a hospital stay, they are more likely to receive the wrong medication, encounter missed or delayed dosages, receive medications known to worsen PD symptoms, experience limited mobility, and face a higher risk of dysphagia (difficulty swallowing). These gaps in care can lead to avoidable complications, longer hospital stays, and worse overall health outcomes. 

The Parkinson’s Foundation Hospital Care Initiative, launched in 2020, aims to eliminate preventable harm and promote higher quality PD inpatient care. Through this initiative, the Foundation provides hospitals with the opportunity for education, training, expertise, and the guidance necessary to improve hospital care for people with PD.  

As a component of this work, the Parkinson’s Foundation Hospital Care Learning Collaborative was established to foster a peer-led group of hospitals, emergency departments, and health systems committed to improving care for people with PD. This national network of hospital and clinical leaders share best practices and lessons learned from national experts to enhance care before, during, and after hospitalization. 

In this episode, we speak with Rebecca Miller, an associate professor at the Yale School of Medicine in the Department of Psychiatry, and a person living with young-onset Parkinson’s. She is joined by Leslie Pelton, a senior program officer with the John A. Hartford Foundation. Together, they do a deep dive into why hospital safety is especially critical for people with Parkinson’s and highlight ongoing efforts to advance safer care, including initiatives such as the Age-Friendly Health Systems and the 4Ms framework.   

During the episode, Leslie mentions the 4Ms Worksheet and My Health Checklist as additional tools for preparing for a hospital visit.

Released: March 6, 2026

My PD Story

Allan Wu headshot
Health Professionals

Allan D. Wu, MD

My path to becoming a movement disorders specialist (a neurologist with specialized training) has not been a straight line. I started as an engineering student, fascinated by how the brain controls movement. Early research on eye movements drew me to neurology and led me to explore how technology could help solve problems for patients with Parkinson’s disease (PD).

During my training, I realized that to understand movement, I needed to learn from both neurologists and physical therapists. Those relationships shaped the first decade of my career and continue to influence how I care for patients.

Then, a second passion emerged. I wanted to understand how technology can help us deliver better care. At the University of California, Los Angeles, I became involved in a group of physicians committed to adopting electronic health records and found myself enjoying the work at the intersection of clinical care and health information systems.

Today, I serve as the Clinical Informatics fellowship director at Northwestern Medicine Parkinson's Disease and Movement Disorders Center, a Parkinson’s Foundation Center of Excellence, helping physicians learn how to maximize value from electronic health record systems to improve patient care.

My two interests merged when I began working with the Parkinson’s Foundation more than a decade ago. What started as a small involvement grew into a national effort to improve hospital safety for people with PD. This work brings together the Foundation, Epic — one of the largest electronic health record companies — and a committed group of physicians and patient advocates.

One of the most meaningful achievements has been adding Parkinson’s‑specific hospital safety features into Epic:

  • When a patient with PD is admitted to a hospital that uses Epic, a flag alerts the care team
  • With one click on this alert, care team members can open a link to Parkinson’s Foundation Hospital Safety Guide for recommendations on medication timing, medications to avoid, mobility needs and more.
  • The patient’s neurologists can receive an automatic notification if their patient is admitted.
  • Standardized reports help hospitals identify patients at risk, track medication timing and recognize those who may need extra support during their stay.

Recently, we reached a breakthrough. Neurologists can now prescribe exact medication times in outpatient visits, and those schedules automatically carry over to inpatient and discharge plans.

This change may seem small, but it solves one of the most common and critical issues people with PD face in the hospital: receiving medications on time, every time.

Through the Parkinson’s Foundation Hospital Care Learning Collaborative, we work with other health care systems across the country on quality improvement efforts to improve hospital safety using these tools.

Our goal is simple but ambitious: to ensure every person with Parkinson’s receives safe, informed and consistent care, no matter where they are hospitalized.

For patients and families, I recommend downloading the Hospital Safety Guide. Bring it with you to the hospital and call your neurologist whenever you are admitted. These small steps, along with broader improvements in health systems, can make a real difference.

Together with patients, caregivers, clinicians and partners nationwide, we are building a safer and smarter future for Parkinson’s care.

Advocate for your best care with the Hospital Safety Guide. Download or order the guide today.

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4 High-Impact Solutions to Transform Parkinson’s Care in the U.S.

Group of doctors and leaders talking on a meeting

Parkinson’s disease (PD) care in the U.S. is at a critical crossroads. As the population ages, more people are being diagnosed with PD. The growing number of people living with PD is outpacing the number of neurologists, creating gaps in access to PD care and impacting quality of life for people with PD and their loved ones. The Parkinson’s Foundation is taking action, identifying ways to improve Parkinson’s care on a national scale.

On September 4, 2025, the Parkinson’s Foundation led The National Roundtable on Parkinson’s Care and Innovation in Washington, D.C., with support provided by Manatt Health. The Foundation organized this first-of-its-kind convening with the goal of identifying solutions to address the most pressing national challenges in Parkinson’s care. Participants included people living with PD, care partners, physicians, health care providers, health system leaders, policy experts and innovators across disciplines and industries — inside and outside of the PD space.

Roundtable participants discussed what is and is not working in PD care and what must change to improve outcomes, reduce costs and ease care partner strain. Their discussion resulted in a new multiyear roadmap to transform PD care called Parkinson’s Care and Innovation: A Patient-Centered Agenda for Change.

“The four priorities in care that came out of the roundtable are not one-size-fits-all solutions, they reflect the nuances of living with this disease. These priorities identify practical, actionable steps to strengthen Parkinson’s care, improve coordination and ensure that people with Parkinson’s receive the support they need to live well,” said Chief Medical Officer of the Parkinson’s Foundation, Sneha Mantri, MD, MS.

Below are the four high-impact, actionable solutions to transform PD care in the U.S.:

1. Create networks to support general neurologists and primary care who provide Parkinson's care. 

With only 660 movement disorder specialists practicing in the U.S., most people with Parkinson’s receive their PD care from a general neurologist or primary care provider. These community clinicians often have less experience and expertise in PD.

To ensure that all people with PD have access to high-quality, evidence-based care regardless of where they live or receive treatment, it is critical that we extend PD expertise to community clinicians.

Education and consultation networks that connect community clinicians with movement disorders specialists can provide the support community clinicians need to navigate the complexities of PD diagnosis and treatment. Equipping community clinicians with these resources and tools can help people with PD access high-quality Parkinson’s care closer to home.

Resources available now to help make this a reality:

2. Develop a care model that makes it easier for people with PD to access services they need to live well.

Quality Parkinson’s care uses a team-based approach that focuses on what matters most to the person with PD. PD care should be tailored to each person and connect them to rehabilitative therapies, mental health and complementary medicine.

However, across the U.S., the availability of providers varies, making it difficult for people with PD and care partners to navigate and access services. For example, compared to those in urban areas, people with PD living in rural areas typically have less access to movement disorders specialists and can find it difficult to build a care team trained in PD.

The PD community needs an evidence-based care model that can be adapted to communities across the U.S. Among many positive outcomes, goals of creating this care model include accelerating time to diagnosis, helping people get the services they need, and addressing the impact of care coordination often felt by care partners.

Resources available now to help make this a reality:

3. Make it easier for health professionals to share information across care settings.

Parkinson’s requires care from a variety of health professionals across many care settings. Ideally, when a person with PD moves between doctors and specialists, these providers would be able to share information with one another. However, limitations in current systems and technology make it challenging for clinicians to communicate, even when treating the same person.

To address this challenge, the PD community needs a standardized clinical data set. This universal data set would serve as a common language across all care settings, ensuring that every time a person with PD sees a clinician, that provider can access essential information, such as past and current treatment plans.

A standardized PD data set would allow health care providers to see the full picture of their patient, and better tailor treatment for them. In the long-term, this data set could also help improve our understanding of Parkinson’s and lay the groundwork for future innovations in care.

Resources available now to help make this a reality:

4. Encourage technological developments grounded in real PD experiences.

Every year there are new ways people with PD can use technology to help manage symptoms. A variety of tech-driven tools are now available to support people with PD, care partners and clinicians. However, these tools have not been widely adopted.

Technology has the potential to transform Parkinson’s care — but only if it reflects real-world needs. Tech-driven tools and innovations must be grounded in the lived experiences of people with Parkinson’s and care partners and must generate data that is easily used by clinicians to inform treatment.

The PD community needs a framework that guides innovation and investment in Parkinson’s technology. This framework would identify the most important problems to address, those who would realistically use this technology and the collaboration and investments needed to bring the technology to life. The framework will ensure innovation is centered on people with Parkinson’s and care partners.

What’s Next: How to Implement These Changes

Bringing attention to these four high-impact solutions to transform PD care in the U.S. are only the beginning.

 “This specific, achievable, and robust agenda gives our community a much-needed action plan to address the challenges that so many of us face. Following these steps will make life better for people with Parkinson’s now and in the future. Time is precious and we have no time to waste!"
-Kathy Blake, Chair of the People with Parkinson’s Advisory Council, retired cardiologist and Roundtable participant

Improving Parkinson’s care on a national scale requires bold ideas, working across PD organizations and the continued commitment to make life better for people with Parkinson’s. As a national leader in Parkinson’s care, the Foundation is has built these four priorities into its strategic plan. Through working with policymakers, clinicians, researchers, industry partners and people living with Parkinson’s, the Foundation works to drive change when it comes to care.

Today, the Foundation is working to drive change through policy. Once the National Parkinson’s Project Advisory Council is seated, council members can use these four ways to improve Parkinson’s care in the U.S. as a roadmap to improve health outcomes for people with PD.

The Parkinson’s Foundation is committed to playing a role in advancing these solutions, ensuring the voices of people with Parkinson’s are heard.

To read more insights from the Parkinson’s Foundation National Roundtable on Parkinson’s Care and Innovation explore our Parkinson's Care and Innovation: A Patient-Centered Agenda for Change.

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4 soluciones de gran impacto para transformar los cuidados para el Parkinson en los EE.UU.

Group of doctors and leaders talking on a meeting

La atención para la enfermedad de Parkinson (EP) en los EE.UU. se encuentra en una encrucijada crítica. A medida que envejece la población, hay más diagnósticos de la EP. El creciente número de personas que viven con la EP está superando al número de neurólogos, creando lagunas en el acceso a la atención de la EP e impactando en la calidad de vida de las personas con la EP y de sus seres queridos. La Parkinson's Foundation está actuando, identificando formas de mejorar los cuidados para el Parkinson a escala nacional.

El 4 de septiembre de 2025, la Parkinson's Foundation dirigió la National Roundtable on Parkinson’s Care and Innovation, (Mesa Redonda Nacional sobre Cuidados e Innovación para el Parkinson) en Washington, D.C., con el apoyo de Manatt Health. La Fundación organizó esta primera reunión de su tipo con el objetivo de identificar soluciones para abordar los desafíos nacionales más apremiantes en los cuidados para el Parkinson. Entre los participantes se encontraban personas que viven con la EP, aliados en el cuidado, médicos, proveedores de atención para la salud, líderes de sistemas de salud, expertos en políticas e innovadores de distintas disciplinas e industrias, dentro y fuera del ámbito de la EP.

Los participantes en la mesa redonda debatieron acerca de lo que funciona y lo que no en la atención para la EP y de lo que debe cambiar para mejorar los resultados, reducir costos y aliviar la tensión de los cuidadores. Su debate dio lugar a una nueva hoja de ruta plurianual para transformar la atención de la EP denominada Parkinson's Care and Innovation: A Patient-Centered Agenda for Change, (Cuidado e innovación para el Parkinson: una agenda para el cambio centrada en el paciente).

"Las cuatro prioridades de atención que surgieron de la mesa redonda no son soluciones “unitalla”, sino que reflejan los matices de vivir con esta enfermedad. Esas prioridades identifican pasos prácticos y factibles para fortalecer los cuidados para el Parkinson, mejorar la coordinación y asegurar que las personas con Parkinson reciban el apoyo que necesitan para vivir bien", dijo la Dra. Sneha Mantri, MD, MS, FAAN, directora médica en jefe de la Parkinson's Foundation.

Las siguientes son las cuatro soluciones de alto impacto y factibles para transformar los cuidados para la EP en los EE.UU.:

1. Crear redes de apoyo para los neurólogos generales y de atención primaria que atienden el Parkinson. 

Con sólo 660 especialistas en trastornos del movimiento ejerciendo en los EE.UU., la mayoría de las personas con Parkinson reciben su atención para la EP de un neurólogo general o de un proveedor de atención primaria. Estos médicos comunitarios suelen tener menos experiencia y conocimientos en la EP.

Para garantizar que todas las personas con la EP tengan acceso a una atención de alta calidad basada en evidencia sin importar dónde vivan o reciban tratamiento, es fundamental que ampliemos los conocimientos en la EP a los médicos comunitarios.

Las redes de educación y consulta que conectan a los médicos de la comunidad con los especialistas en trastornos del movimiento pueden proporcionar el apoyo que los médicos de la comunidad necesitan para navegar por las complejidades del diagnóstico y el tratamiento de la EP. Equipar a los médicos comunitarios con estos recursos y herramientas puede ayudar a las personas con la EP a acceder a una atención de alta calidad para el Parkinson más cerca de casa.

Recursos disponibles ahora para ayudar a hacerlo realidad:

2. Desarrollar un modelo de atención que facilite a las personas con la EP el acceso a los servicios que necesitan para vivir bien.

La atención de calidad para el Parkinson utiliza un enfoque basado en el trabajo en equipo que se centra en lo más importante para la persona con la EP. Los cuidados para la EP deberían adaptarse a cada persona y conectarla con terapias de rehabilitación, salud mental y medicina complementaria.

Sin embargo, la disponibilidad de proveedores varía en los EE.UU., lo que dificulta a las personas con la EP y a sus cuidadores navegar y acceder a los servicios. Por ejemplo, en comparación con las que viven en zonas urbanas, las personas con la EP en zonas rurales suelen tener menos acceso a especialistas en trastornos del movimiento y les puede resultar difícil formar un equipo de atención con formación en la EP.

La comunidad de la EP necesita un modelo de atención basado en evidencia que pueda adaptarse a las comunidades alrededor de los EE.UU. Entre los muchos resultados positivos, los objetivos de crear este modelo de atención incluyen acelerar el tiempo hasta el diagnóstico, ayudar a las personas a obtener los servicios que necesitan y abordar el impacto de coordinar los cuidados, que a menudo experimentan los aliados en el cuidado.

Recursos disponibles ahora para ayudar a hacerlo realidad:

3. Facilitar a los profesionales de la salud intercambiar información entre centros de atención.

El Parkinson requiere cuidados de diversos profesionales de la salud en muchos entornos de atención. Lo ideal sería que, cuando una persona con la EP alterna entre médicos y especialistas, éstos pudieran compartir información entre sí. Sin embargo, las limitaciones de los sistemas y la tecnología actuales dificultan la comunicación entre los profesionales, incluso cuando tratan a la misma persona.

Para abordar este desafío, la comunidad de la EP necesita un conjunto de datos clínicos estandarizados. Este conjunto de datos universales serviría como lenguaje común en todos los entornos de atención, garantizando que cada vez que una persona con la EP vea a un médico, éste pueda acceder a información esencial, como los planes de tratamiento pasados y actuales.

Un conjunto de datos estandarizados acerca de la EP permitiría a los profesionales de la salud tener un panorama completo del paciente y adaptar mejor el tratamiento a sus necesidades. A largo plazo, este conjunto de datos también podría ayudar a mejorar nuestra comprensión del Parkinson y sentar las bases para futuras innovaciones en la atención.

Recursos disponibles ahora para ayudar a hacerlo realidad:

4. Fomentar desarrollos tecnológicos basados en experiencias reales de la EP.

Cada año aparecen nuevas formas en las que las personas con la EP pueden utilizar la tecnología para ayudar a manejar los síntomas. Actualmente existen varias herramientas tecnológicas para ayudar a las personas con la EP, a sus cuidadores y a los médicos. Sin embargo, estas herramientas no se han adoptado de forma generalizada.

La tecnología tiene el potencial de transformar los cuidados para el Parkinson, pero sólo si refleja las necesidades del mundo real. Las herramientas e innovaciones tecnológicas deben basarse en las experiencias vividas por las personas con Parkinson y sus aliados en el cuidado y deben generar datos que los médicos puedan utilizar fácilmente para informar acerca del tratamiento.

La comunidad de la EP necesita un marco que guíe la innovación y la inversión en tecnología para el Parkinson. Este marco identificaría los problemas más importantes que hay que resolver, quiénes utilizarían esta tecnología de forma realista y la colaboración e inversiones necesarias para hacerla realidad. El marco garantizará que la innovación se centre en las personas con Parkinson y en los aliados en el cuidado.

Recursos disponibles ahora para ayudar a hacerlo realidad:

  • Explore las herramientas tecnológicas para la vida diaria con Parkinson 

Qué sigue: cómo aplicar estos cambios

Enfocar la atención en estas cuatro soluciones de gran impacto para transformar los cuidados para la EP en los EE.UU. es sólo el principio.

 "Esta agenda específica, alcanzable y sólida ofrece a nuestra comunidad un plan de acción muy necesario para abordar los desafíos a los que tantos nos enfrentamos. Seguir estos pasos mejorará la vida de las personas con Parkinson ahora y en el futuro. ¡El tiempo es oro y no tenemos tiempo que perder!"
-Kathy Blake, presidenta del Consejo Asesor para Personas con Parkinson de la Parkinson’s Foundation (Parkinson’s Foundation People with Parkinson’s Advisory Council), cardióloga jubilada y participante en la mesa redonda.

Mejorar los cuidados para el Parkinson a escala nacional requiere ideas audaces, trabajar a través de las organizaciones de la EP y el compromiso continuo de mejorar la vida de las personas con Parkinson. Como líder nacional en la atención para el Parkinson, la Fundación ha incorporado estas cuatro prioridades en su plan estratégico. A través de la colaboración con legisladores, médicos, investigadores, socios de la industria y personas que viven con Parkinson, la Fundación trabaja para impulsar el cambio en lo que respecta a la atención.

Hoy en día, la Fundación trabaja para impulsar el cambio a través de políticas. Una vez que se constituya el Consejo Asesor del Proyecto Nacional sobre el Parkinson (National Parkinson’s Project Advisory Council), los miembros del consejo podrán utilizar estas cuatro formas de mejorar la atención para el Parkinson en los EE.UU. como hoja de ruta para mejorar los resultados de salud de las personas con la EP.

La Parkinson's Foundation se compromete a desempeñar un papel en el avance de estas soluciones, asegurando que las voces de las personas con Parkinson sean escuchadas.

Para leer más hallazgos de la Parkinson’s Foundation National Roundtable on Parkinson’s Care and Innovation (Mesa Redonda Nacional sobre Cuidados e Innovación para el Parkinson), explore la agenda Parkinson's Care and Innovation: A Patient-Centered Agenda for Change.

Policy & Advocacy

Shaping the Future of Parkinson’s Policy: Meet Our Chief Strategy and Policy Officer

🧠 What will you learn in this article?

This article highlights how the Parkinson’s Foundation plans to create change, and protect Parkinson’s research and care, through its new policy efforts. It features:

  • An interview with our Chief Strategy and Policy Officer, Andi Lipstein Fristedt
  • Top policy issues for the Parkinson’s community
  • A sneak peek into the Parkinson’s Foundation advocacy plan
Andi Lipstein Fristedt speaking at Parkinson's Policy Forum

For the first time, the Parkinson’s Foundation is connecting its mission and vision to policy and advocacy work that drives change at the federal and state levels. Through this work, the Foundation aims to shape a future where Parkinson’s disease (PD) research is steadily funded, every person with PD has access to the care and support they deserve, and fewer people develop PD in the first place.

Leading these efforts is Andi Lipstein Fristedt, Executive Vice President, Chief Strategy and Policy Officer. Andi leads the Foundation’s strategic direction and policy initiatives. Andi brings nearly 20 years of leadership experience to the Parkinson’s Foundation. In this interview, Andi shares how she views policy as an opportunity and powerful tool to accelerate progress and create meaningful change — starting now.

1. Can you tell us about your prior policy experience in the health space?

Before joining the Parkinson's Foundation, I spent most of my career in government. Most recently, I served as Deputy Director at the Centers for Disease Control (CDC) where I led the agency’s global health work, as well as its cross cutting offices related to policy, budget, communications and congressional engagement. Before that I was at the Food and Drug Administration (FDA) as Deputy Commissioner for Policy, Legislation & International Affairs where I advanced key policies to strengthen the agency’s regulatory agenda. I previously served on Capitol Hill for almost a decade with the Senate Committee on Health, Education, Labor and Pensions and as Chief of Staff in the Oregon State Legislature.

These diverse experiences fuel my passion to bridge the gap between Parkinson’s research, care and policy at both the state and federal level.

2. Why bring your talents to the Parkinson’s community?

Like so many others, Parkinson’s disease has impacted people I care deeply about. I am excited about the opportunity to come to an organization that understands the people it serves, centers them in the work, and is positioned to drive progress alongside them. I’m here to lead change for people living with Parkinson’s and their care partners. These are challenging times in public policy, but there's a real opportunity to reimagine what’s possible. The federal and state policy landscape gives us opportunity to make short- and long-term changes to strengthen public health and health care for years to come.

3. What are the top policy issues for people with Parkinson’s? How is the Parkinson’s Foundation addressing them?

Right now, the Foundation is advancing a number of policy priorities:

  • Protecting and advancing the National Parkinson's Project. The National Plan to End Parkinson’s Act was signed into law in 2024, creating the National Parkinson’s Project, and now we’re working to push the administration to implement it in a timely manner. This is the first federal project dedicated to PD research, prevention and care — our policy work will help ensure it delivers real results for people with PD.
  • Research funding. Parkinson's is the fastest-growing neurodegenerative disease, yet federal funding has not kept pace with its rise. In addition to advocating for more funding at the National Institutes of Health (NIH) and other federal agencies, we're starting to see research funding opportunities in state governments. Our goal is to secure $600 million a year for Parkinson's research at the NIH by 2028. We aim to fully deliver on the promise of this pivotal moment in PD discovery.

“Our goal is to secure $600 million a year of Parkinson's disease research at the NIH by 2028. We aim to fully deliver on the promise of this pivotal moment in PD discovery.”

  • Environmental health threats. Environmental factors, such as chemicals like paraquat and trichloroethylene (TCE) have been tied to Parkinson's, and this is where policy changes can make a big difference. Paraquat is banned in more than 70 countries, including China, even though they still sell it to the U.S. It's something that we have the power to change by working with the Environmental Protection Agency (EPA) and engaging with state governments.
  • Helping people access PD care. There's so much work to do here at the federal and state levels, making sure that we're supporting policies that help people with Parkinson’s access timely, quality and affordable care wherever they live. For example, we’ve seen how hard the uncertainty around telehealth coverage has made care for providers and people with PD.
  • Supporting public health agencies. Public health agencies need the tools and the authority to advance prevention and support new PD treatments and care breakthroughs. This is not a given. We work to ensure the strongest possible public health programs, to ensure that we're moving towards better treatments and a cure for Parkinson's.

4. How can people with Parkinson’s and allies get involved?

Andi Lipstein Fristedt speaking at Parkinson's Policy Forum

There are a lot of opportunities for people with Parkinson's and the people who care about them to engage in policy. Policymakers need to hear your stories and experiences as they are considering policy changes, and we’re working to help people engage with policymakers, year-round.

One exciting opportunity to engage with Congress is coming up March 15 to 18, in Washington, D.C., through our Parkinson's Policy Forum and Day of Action. We will host this event alongside The Michael J. Fox Foundation for Parkinson’s Research and the American Parkinson Disease Association. We’ll be inviting advocates to come to D.C., spend time together as a community and engage lawmakers around key priorities for the Parkinson's community.

But you don’t have to be in Washington, D.C. or a state capital to reach out to your lawmakers, and there are lots of other ways to be involved in advocacy. The Parkinson’s Foundation is building and expanding our platform to share timely action items and help support advocates who want to do that work and make their voices heard.

5. Why should policymakers care about policies that impact Parkinson’s?

Parkinson’s is the fastest-growing neurodegenerative disease, with more than 1 million Americans living with PD and 90,000 new people diagnosed each year. Policymakers have a responsibility to address diseases like PD that impact communities and drive up health care costs. Research for cures has always been, and must remain, bipartisan. When policymakers hear stories from their constituents facing life-altering issues, they listen — especially when those voices unite.

We are at a pivotal moment, with scientific advancements within reach. Now is not the time to pump the breaks — but hit the gas to take advantage of the incredible scientific progress that has been happening to yield real changes for people living with PD. Sustained congressional investment in research and programs leads directly to earlier detection, better treatments, and a cure. And today, we know policy actions by state and federal agencies can protect people from developing PD in the first place.

6. What should people in the PD community tell their Congressperson or State Representative?

Part of the Parkinson’s Foundation policy strategy is showing how policy decisions shape the daily lives of people with Parkinson's and, in turn, ensuring that policy changes reflect lived experience. We need legislators to see a future where new disease-modifying therapies exist, where there are enough specialists to treat people with Parkinson’s, where people are protected from toxic chemicals that contribute to the development of PD and where there's a cure. People with Parkinson’s and their families play a critical role in sharing what these possibilities mean to them.

Lawmakers respond to personal stories — they make this disease tangible. Connecting policy to the realities of living with Parkinson’s is a vital component of our policy work.

7. What gives you hope about helping people with Parkinson’s advocate for policy change?

The community. There are so many people across the country and world, demanding a different future where we think more about Parkinson's disease on a federal and state policy level. The strength and passion of this community is what will ultimately make the difference in the policy space.

8. What’s next for Parkinson’s Foundation policy and advocacy work?

At the Parkinson’s Foundation, we’re focused on policies that improve life for people living with PD today and accelerate progress toward better care and a cure. There's so much change happening across health agencies, and we know that a strong, effective policy strategy will help advance care, research and support for people with Parkinson's.

We’re excited for the Parkinson's Policy Forum and Day of Action coming up in March and the launch of our policy priorities.

We also invite our community to help raise PD awareness. Join us at the local level, stay connected with us and share information with friends and family.

Make your voice heard. Sign up today to receive our emails and take part in Parkinson’s Foundation advocacy work. If you already receive our emails, sign in to the Online Supporter Center and opt into Policy emails under Communication Preferences.

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