Podcasts

Episode 137: CEO John Lehr Offers Broad Insight into the Parkinson's Foundation

Past podcasts have given glimpses into the broad range of programs and initiatives that the Parkinson’s Foundation has developed and supports. But to give a better understanding of the Foundation’s mission, its operation, reach, and funding, we spoke with John Lehr, its president and CEO. He discussed the reasons for the merger of the National Parkinson Foundation and the Parkinson’s Disease Foundation to form today’s Parkinson’s Foundation, what the new organization has accomplished, and its plans for the future.

Released: September 20, 2022

Podcasts

Episode 96: PD Medications and Side Effects

Adverse effects, often called side effects, are a common phenomenon that accompanies the use of many drugs, including ones used to treat the symptoms of Parkinson’s disease (PD). Any treatment is a balance between the desired effects of a drug and undesirable ones, so how to best ease symptoms while making the treatment tolerable. Specific to classes of drugs used for PD, some of the side effects may be drowsiness, insomnia, light headedness, hallucinations, cognitive impairment, swelling of the legs, dry mouth, weight gain, compulsive behavior, and others. These are just possibilities, and a good working relationship with a PD health care team can help avoid many of them. Beyond the PD team, keeping other health care providers informed is advisable since drug interactions can occur, so all practitioners (including dentists) should be aware of all medications that a person is taking, prescription, over-the-counter and even supplements.

In this podcast episode, neurologist Dr. Irene Richard of the University of Rochester Medical Center discusses several of the various drugs and drug classes used to treat the symptoms of PD in relation to the adverse effects that can accompany them. She offers insights into several ways to avoid or minimize adverse effects of drug therapy, what clinicians should tell people starting a new drug, and what people should ask as well as be aware of and report back.

Released: December 29, 2020

Podcasts

Episode 95: The Healing Power of Social Work

A team approach to Parkinson’s disease (PD) often results in better outcomes and quality of life for people with PD and their care partners. Members of the team have specific expertise in evaluating and fulfilling the needs of the person and family. One of those members is the social worker, and ideally, one who specializes in chronic or progressive diseases. He or she can assess how the person is functioning in their environment, their emotional state, and their needs. Once the assessment is done, the social worker can help meet those needs by directing people to the most appropriate resources, or in the case of Licensed Clinical Social Workers (LCSW’s), (or the equivalent in some states, Licensed Independent Social Workers), by directly providing therapy in the areas of mental and emotional health. Social workers also can function as a “point person” or starting point for people with PD and care partners who may know what they need but not where to find it or how to access it.

In this podcast episode, Elizabeth Delaney, LCSW, social worker in Columbia University’s movement disorders division and the center coordinator of the Parkinson’s Foundation Center of Excellence at Columbia, describes the role of social workers as part of a Parkinson’s health care team, and she offers suggestions on how people with PD can find a social worker experienced in working with people with progressive diseases.

Released: December 15, 2020

Podcasts

Episode 92: Clinical Issues Behind Impulse Control Disorders

Impulse control disorders in Parkinson’s disease (PD) are more common than originally thought, affecting an estimated one in six people with PD taking dopamine agonists. They may appear as unhealthy or compulsive levels of shopping, gambling, eating, sexual activity, or involvement in hobbies. They appear to be related to dopamine replacement therapy, so finding the right level of medications can be a challenge to manage symptoms without incurring impulsivity issues. It is important that people with PD, their care partners, and health care professionals be aware of and recognize these activities so that they can be addressed promptly to avoid, for example, social, emotional, economic, and health issues that may result from these disorders. The harm often goes beyond the person with the disorder and can affect family, friends, and others around them. Once recognized, impulse control disorders can often be managed or eliminated by working with a doctor to change dopamine agonist medications or dosage, or in some cases, even going on to deep brain stimulation.

Dr. Mark Groves, Consultant Psychiatrist at the Parkinson’s Foundation’s Center of Excellence at Mount Sinai Beth Israel in New York City, discusses the problem of impulse control disorders, what forms they may take, approaches to recognizing them, and the need to acknowledge them as a biologic condition and not a character or personality flaw.

Released: November 3, 2020

Podcasts

Episode 141: How Social Workers Can Help Ease Anxiety about the Unknown

The news of a Parkinson’s diagnosis can be overwhelming. So many questions arise, including how it will change the person’s life, what lies ahead, and what to do first. Social workers can be a vital resource in helping a newly diagnosed person, care partner, and family navigate the road ahead, as well as provide ongoing support through the course of the disease. They are the health professionals who know and can coordinate many of the most helpful resources. Or as social worker Lance Wilson, LSW, C-SWHC, ASW-G, the education outreach coordinator for the Jefferson Health Comprehensive Parkinson’s Disease and Movement Disorder Center in Philadelphia, a Parkinson’s Foundation Center of Excellence, puts it, social workers are the Yellow Pages for health care, tying people into the resources they need. He says social workers can help put people’s minds at ease by assessing their needs and lining up professionals who can provide medical, mental health, spiritual services, and more.

Released: December 13, 2022

Podcasts

Episodio 22: Cambios cognitivos

Cuando uno piensa en la enfermedad de Parkinson (EP), es fácil asociarla más con los síntomas motores, como la rigidez o el temblor; pero también existen síntomas no motores, como los cambios de estado de ánimo, la ansiedad o la depresión.

En este episodio, hablamos con la doctora Elsa Baena, neuropsicóloga clínica en el Barrow Neurological Institute, Centro de Excelencia de la Parkinson’s Foundation, acerca de estos cambios cognitivos asociados con el Parkinson.

La doctora Baena explica la conexión entre el Parkinson y la cognición y cómo pueden prepararse las personas con Parkinson para estos cambios (no sólo las maneras farmacológicas, sino también las terapéuticas).

Asimismo aprenderemos acerca de los miembros del equipo de atención médica que pueden apoyar a una persona con Parkinson y a sus familiares con estos cambios cognitivos.

Lanzado: 18 de octubre de 2022

Educational Events

Living Well with Parkinson's Disease

9:00 am to 3:00 pm PST
Free
USC Symposium

Join the University of Southern California (USC), together with the Parkinson’s Foundation, for “Living Well with Parkinson’s Disease,” a free educational symposium for people with Parkinson's and care partners.

Hear from USC speakers about therapeutics, surgical updates, non-motor symptoms, and lifestyle in Parkinson's. There will be Q&A discussions after each panel conversation. Please submit your questions with your registration.

Attendance is free, but registration is required and seating is limited.


In partnership with Keck School of Medicine of University of Southern California Parkinson’s Disease and Movement Disorder Center, a Parkinson's Foundation Center of Excellence.

USC

Upcoming Events

Educational Events

Care Partner Conversations

Led by care partners, these webinars will bring together spouses, partners, family members, and friends who provide care—or anyone interested in learning more about caregiving and Parkinson’s disease.

Virtual
Educational Events

Managing Changing Symptoms

This program explores the “mid-stride” changes that happen and offers strategies to manage them. Learn about treatment options, when to adjust your care team, and how to stay independent and supported as your needs change.

Pewaukee, WI
Educational Events

Live Fitness Friday - Strong from the Seat: Chair Yoga

Virtual ( Zoom )
1:00 pm to 1:45 pm EST
Free
A man lifting two weights in a T motion

Gather with others in the Parkinson’s community for a gentle yet effective movement class you can do from a chair. Together we’ll work on mobility, posture, circulation, and breath while keeping safety and accessibility at the forefront. Expect clear guidance, uplifting energy, and movements that help you feel more at home in your body.

Instructor

Crista Ellis, E-RYT, B.Sc,
Yoga & Meditation Teacher, Life Coach, Founder of Rising Rose Yoga
Senior Community Engagement Manager, Parkinson's Foundation

There is no charge to attend, but registration is required. This program is open to people with Parkinson's, their family, friends, and the community.

PD Health @ Home is presented by the Light of Day Foundation, whose generosity has made this programming possible.

Light of Day

This is a virtual program, taking place live, using the online Zoom platform. Instructions on joining the webinar are provided after registering.

Upcoming Events

Educational Events

Care Partner Conversations

Led by care partners, these webinars will bring together spouses, partners, family members, and friends who provide care—or anyone interested in learning more about caregiving and Parkinson’s disease.

Virtual
Educational Events

Managing Changing Symptoms

This program explores the “mid-stride” changes that happen and offers strategies to manage them. Learn about treatment options, when to adjust your care team, and how to stay independent and supported as your needs change.

Pewaukee, WI
Raise Awareness

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.

Raise Awareness

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.

Back to Top