Substantial Matters: Life & Science of Parkinson’s
How can people with Parkinson's live a better life today? Join the Parkinson's Foundation as we highlight the treatments and techniques that can help all people affected by Parkinson’s live a better life today, as well as the research that can bring a better tomorrow. View more information on our episodes by visiting parkinson.org/Podcast. Share your comments and thoughts at parkinson.org/Feedback.
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Make Every Minute Count: Optimizing Your Parkinson’s Doctor Visits
06/24/2025
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 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. Follow and rate us on your favorite podcast platform to be notified when there’s a new episode! Let us know what other topics you would like us to cover by visiting .
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¡EN ESPAÑOL! Paso a paso: encontrar el equilibrio con Parkinson
06/10/2025
¡EN ESPAÑOL! Paso a paso: encontrar el equilibrio con Parkinson
Las caídas y son frecuentes en el Parkinson, sobre todo a medida que avanza la enfermedad. Estos síntomas pueden dificultar las tareas diarias al afectar su capacidad para caminar y moverse con confianza. Comprender cómo afecta el Parkinson al equilibrio y reconocer otras posibles causas es esencial para encontrar las estrategias adecuadas para controlar los síntomas, mejorar la movilidad y mantener la independencia. En este episodio, hablamos con el Dr. Daniel Martinez Ramirez, neurólogo especialista en trastornos del movimiento en Nuevo León, México. El Dr. Martinez habla acerca de llevar un registro de los cambios en el equilibrio, explorar las opciones de tratamiento y de cómo levantarse de manera segura después de una caída. ¡Siga y califíquenos en su plataforma favorita de podcasts para recibir notificaciones cuando salga un nuevo episodio! Cuéntenos que otros temas le gustaría que cubriéramos visitando .
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Understanding Depression, Anxiety, and Apathy
05/06/2025
Understanding Depression, Anxiety, and Apathy
Depression, anxiety, and apathy are common symptoms that are often overlooked in people with Parkinson’s disease (PD). Nearly half of those living with PD are likely to experience depression or anxiety at some point, but these non-motor symptoms often go unrecognized and undertreated. Because their signs can overlap and mimic one another, it can be challenging to pinpoint exactly what someone is going through. Depression is known for feelings of persistent sadness or hopelessness. Anxiety might look like constant worry, excessive nervousness, or getting upset easily. Apathy, which is sometimes mistaken for depression, is the lack of motivation or interest to do things you used to enjoy. These symptoms can greatly impact your quality of life and worsen other PD symptoms. In this episode, we speak with Lauren Zelouf, MSW, LCSW from Penn Medicine’s Parkinson’s Disease & Movement Disorders Center, a Parkinson’s Foundation Center of Excellence. She shares how to distinguish among these different symptoms, emphasizes the importance of recognizing the signs, and offers coping strategies for managing symptoms and seeking support. Follow and rate us on your favorite podcast platform to be notified when there’s a new episode! Let us know what other topics you would like us to cover by visiting .
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Maintaining Independence When Living Alone with Parkinson’s
04/22/2025
Maintaining Independence When Living Alone with Parkinson’s
Living alone with Parkinson’s disease (PD) presents daily challenges, but it also offers certain benefits, such as the independence to control your own schedule. Whether you choose to live alone, or find that nearby friends and family aren’t as close as you would like, there are resources to support you. Living alone can also bring physical and emotional hurdles. You may experience feelings of isolation or loneliness, and everyday tasks like cooking and cleaning can become more difficult while juggling PD symptoms. There are strategies that can help you feel more secured and empowered to overcome these challenges. For example, you might consider using a food delivery service on days when preparing meals feels overwhelming, or reaching out to a neighbor for help with shoveling snow. It’s important to prioritize self-care and recognize when it’s time to ask for help. In this episode, we speak with Susan Englander and Fran Chernowsky, two individuals living alone with Parkinson’s who are also members of the Parkinson’s Foundation group. They share their experiences with the initial challenges of receiving a PD diagnosis, the importance of staying open and flexible to new things, and the value of finding a supportive community. Follow and rate us on your favorite podcast platform to be notified when there’s a new episode! Let us know what other topics you would like us to cover by visiting .
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¡EN ESPAÑOL! Consejos prácticos y recursos para vivir bien con Parkinson
04/03/2025
¡EN ESPAÑOL! Consejos prácticos y recursos para vivir bien con Parkinson
de la Parkinson’s Foundation cuenta con personal de enfermería, trabajadores sociales y educadores de la salud. Están disponibles por teléfono y correo electrónico para responder a sus preguntas e inquietudes acerca de la enfermedad de Parkinson, tanto en inglés como en español. Nuestros especialistas de la Línea de Ayuda responden llamadas de personas de toda la comunidad de Parkinson, incluyendo a quienes viven con la enfermedad, sus seres queridos, proveedores de atención médica y más. Ofrecen apoyo y recomiendan los recursos que más le interesan, sin importar dónde se encuentre en su recorrido por el Parkinson. En este episodio, hablamos con Adolfo Diaz y Elena Godfrey, miembros de nuestro equipo de la Línea de Ayuda. Hablan acerca de preguntas frecuentes de quienes llaman, recursos acerca del Parkinson ofrecidos en español y consejos prácticos para manejar los síntomas y abogar por sí mismo ante su proveedor de atención médica. ¡Siga y califíquenos en su plataforma favorita de podcasts para recibir notificaciones cuando salga un nuevo episodio! Cuéntenos que otros temas le gustaría que cubriéramos visitando .
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The Role of Caregivers in Parkinson’s Dementia
03/25/2025
The Role of Caregivers in Parkinson’s Dementia
Thinking and memory changes, also known as cognitive changes, may become more noticeable as Parkinson’s disease (PD) progresses. If these symptoms begin to interfere with everyday tasks, it may be a sign of dementia. Understanding the signs of dementia in Parkinson’s, along with its different names and variations, is essential for tailoring treatment options to your specific symptoms. The early signs of dementia may be hard to notice at first. Often, it is the care partner or family member who witnesses the gradual decline in thinking abilities. Care partners play a crucial role in providing the best quality of life and support for their loved ones with Parkinson’s. In this episode, Jori Fleisher, MD, MSCE and Claire Pensyl talk about Parkinson’s dementia. Dr. Fleisher is a movement disorders neurologist and co-director of the Parkinson’s Foundation Center of Excellence at Rush University in Chicago, where her research focuses on designing and implementing novel models of care and support for people living with neurodegenerative disorders. She is the Principal Investigator of the trial, an entirely virtual, national trial to educate and empower care partners whose loved ones have Parkinson's or Lewy Body Dementia (LBD). Claire, on the other hand, was the care partner for her husband, Ira, who had PD and LBD. She shares her experience witnessing Ira’s cognitive challenges as they became more apparent and describes how she became motivated to learn more about the signs of dementia as the disease progressed. Follow and rate us on your favorite podcast platform to be notified when there’s a new episode! Let us know what other topics you would like us to cover by visiting .
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Allied Health Spotlight: The Challenges of Speech and Swallowing Issues
02/11/2025
Allied Health Spotlight: The Challenges of Speech and Swallowing Issues
Allied health professionals are a group of healthcare providers whose role and expertise complement the work of physicians. These include specialists such as physical and occupational therapists, speech-language pathologists, nutritionists, and many more. They are just as important as your Movement Disorders Specialists and Neurologists, and play a vital role in creating a comprehensive, well-rounded Parkinson’s care team that caters to your individual needs and addresses your overall well-being. In this second episode of our Allied Health Spotlight series, we highlight the benefits of working with a speech-language pathologist early on in your Parkinson’s journey. Parkinson’s disease (PD) affects movement throughout the body, including the face, mouth, throat, and breathing muscles. As the disease progresses, people with PD may develop problems with speaking and swallowing. This can not only impact eating habits, but can also lead to soft voice and drooling, making conversations during social gatherings uncomfortable. In this episode, Melissa Grassia Chisholm, MS, CCC-SLP, a licensed speech pathologist and a voice-swallow airway expert, explains how speech and swallowing problems can develop in people with PD. She also discusses different diagnostic procedures, therapies, and programs that can help improve speech and swallowing. Follow and rate us on your favorite podcast platform to be notified when there’s a new episode! Let us know what other topics you would like us to cover by visiting .
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Reframing Your Thoughts with Mindfulness
01/28/2025
Reframing Your Thoughts with Mindfulness
Mindfulness is the intentional act of paying attention to one’s body, sensations, thoughts, feelings, or surroundings in the present moment, without judgment. Practicing mindfulness can give a sense of calm, help manage pain, reduce stress, and improve clarity and mental well-being. In being aware of and calmly accepting feelings, thoughts, and bodily sensations in a non-judgmental way, individuals can reshape their thoughts and expectations into something more manageable. For people with Parkinson’s disease (PD), mindfulness is particularly good for reducing anxiety and depression, as well as coping with daily stressors. In this episode, Crista Ellis, Senior Community Program Manager with the Parkinson’s Foundation and a certified yoga and meditation educator, describes what mindfulness is, how easy it is to practice in a short amount of time, and how it can benefit people with PD. She also leads us through a brief mindfulness practice for listeners to participate in. Follow and rate us on your favorite podcast platform to be notified when there’s a new episode! Let us know what other topics you would like us to cover by visiting .
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The Evolution of PD GENEration for Genetic Testing & Counseling
12/31/2024
The Evolution of PD GENEration for Genetic Testing & Counseling
The Parkinson’s Foundation makes life better for people with Parkinson’s disease (PD) by improving care and advancing research toward a cure. The Foundation recognizes the importance of funding and supporting research studies dedicated to better understanding the causes of PD, developing more effective treatments, and ultimately finding a cure. The Foundation awards research grants to support investigators working on diverse research projects, along with collaborating with other institutions to advance PD research. One of its major initiatives is exploring the genes and other factors associated with the development of PD through a global project, PD GENEration: Mapping the Future of Parkinson’s Disease. By gathering genetic information from tens of thousands of people with PD, this study offers genetic testing for relevant disease-related genes and genetic counseling to help participants understand their results, all at no cost to them. At the same time, knowledge gathered through PD GENEration will promote more focused, gene-specific clinical trials of drugs and may lead to novel therapy options for people with PD. In this episode, we explore the origins of PD GENEration, its growth over the years, and its goals with Dr. James Beck, Chief Scientific Officer of the Parkinson’s Foundation. Follow and rate us on your favorite podcast platform to be notified when there’s a new episode! Let us know what other topics you would like us to cover by visiting .
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¡EN ESPAÑOL! Los desafíos del habla y la deglución
10/16/2024
¡EN ESPAÑOL! Los desafíos del habla y la deglución
Los profesionales de la salud aliados son un grupo de profesionales médicos cuya función y conocimientos complementan la labor de los médicos. Entre ellos se encuentran los fisioterapeutas, terapeutas del habla y el lenguaje, nutricionistas y más. Son tan importantes como sus especialistas en trastornos del movimiento y neurólogos y desempeñan un papel vital en la creación de un equipo de atención al Parkinson integral y completo que atienda sus necesidades individuales y se ocupe de su bienestar general. En este episodio, hablamos con Ana Molano, una terapeuta del habla y el lenguaje especializada en el tratamiento de los trastornos de la voz y la deglución. A medida que avanza la enfermedad de Parkinson, la voz de una persona puede volverse más suave o puede experimentar dificultades para tragar. Ana habla de las ventajas de trabajar con un terapeuta del habla para evaluar y abordar los desafíos del habla y la deglución en la EP. Destaca la importancia de obtener una evaluación de referencia para identificar los problemas actuales, lo que ayuda a crear un plan terapéutico individualizado. También habla de los síntomas frecuentes que puede experimentar una persona con la EP, así como de algunos signos menos comunes a los que hay que estar atentos. ¡Siga y califíquenos en su plataforma favorita de podcasts para recibir notificaciones cuando salga un nuevo episodio! Cuéntenos que otros temas le gustaría que cubriéramos visitando .
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Listening to the Voices of Our Parkinson’s Caregivers
11/12/2024
Listening to the Voices of Our Parkinson’s Caregivers
Each November, the Parkinson’s Foundation joins organizations across the country to honor care partners for National Family Caregivers Month. In this episode, we highlight the stories and experiences of two people who care for a person with Parkinson’s disease. Ripley Hensley is an emergency room nurse and a doctoral student at the University of Connecticut School of Nursing. Although she currently lives in Connecticut, she manages to find ways to help support both her mother, who is the primary caregiver, and her father who has Parkinson’s, back in Georgia. Meanwhile, Tom Graffeo lives with his partner, who has young-onset Parkinson’s. Although their caregiving roles differ, they share similar concerns and discuss how they provide care for their loved ones, while also prioritizing their own well-being. Follow and rate us on your favorite podcast platform to be notified when there’s a new episode! Let us know what other topics you would like us to cover by visiting .
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Current Tools for Receiving a Parkinson’s Diagnosis
10/22/2024
Current Tools for Receiving a Parkinson’s Diagnosis
Parkinson’s disease (PD) is a “clinical” diagnosis, based on a person’s medical history, symptoms, and physical exam. Although certain laboratory or imaging tests can be helpful in reaching a diagnosis, no single test can confirm PD. Among the tests currently used to support a PD diagnosis, or to rule out other conditions that can mimic PD, are magnetic resonance imaging (MRI) of the brain, the dopamine transporter scan (DaTscan) to look at how dopamine is transported in certain areas of the brain, Syn-One, or skin biopsies, and blood work. Sometimes, a PD diagnosis is straightforward based on the presence of certain symptoms, but in other cases, it may take a number of clinic visits to make a definitive diagnosis. The best way to ensure a correct diagnosis of PD, or a similar condition, is to see a neurologist specializing in movement disorders. One of the leading Parkinson’s specialists is Dr. Michael Okun, National Medical Advisor for the Parkinson’s Foundation and Director of the Fixel Institute for Neurological Diseases at the University of Florida in Gainesville. In this podcast episode, he explains some of the current tools for making a Parkinson’s diagnosis, how they are used, and some of their limitations. Follow and rate us on your favorite podcast platform to be notified when there’s a new episode! Let us know what other topics you would like us to cover by visiting .
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¡EN ESPAÑOL! Alucinaciones y delusiones en el Parkinson
08/28/2024
¡EN ESPAÑOL! Alucinaciones y delusiones en el Parkinson
Alrededor de un 20-40% de las personas con Parkinson experimentan algún tipo de alucinación o delusión en algún momento de su recorrido por la enfermedad de Parkinson (EP). Aunque en la actualidad los estudios no indican que la comunidad hispanohablante de la EP corra un mayor riesgo de desarrollar estos síntomas, sigue siendo importante conocer los posibles signos para estar mejor preparado para manejar situaciones de emergencia. Las alucinaciones y delusiones en sí pueden asustar, pero cuando se combinan con otros síntomas del Parkinson, pueden ser aún más problemáticas. En este episodio, hablamos con la Dra. Blanca Valdovinos, neuróloga especialista en trastornos del movimiento del Centro Médico de University of Rochester. Ella comparte su experiencia de primera mano en trabajar con personas con Parkinson, basándose en el tiempo que pasó dirigiendo una clínica semanal para sus pacientes hispanohablantes con afecciones neurológicas. Explica qué son las alucinaciones y delusiones, destaca sus diferencias y proporciona ejemplos de cómo pueden presentarse en una persona con Parkinson. Ofrece orientación para reconocer las primeras señales y comparte cómo los familiares y aliados en el cuidado pueden responder mejor si su ser querido experimenta una alucinación o delusión. ¡Siga y califíquenos en su plataforma favorita de podcasts para recibir notificaciones cuando salga un nuevo episodio! Cuéntenos que otros temas le gustaría que cubriéramos visitando .
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Allied Health Spotlight: Physical Therapy Recommendations for Exercising Safely
08/13/2024
Allied Health Spotlight: Physical Therapy Recommendations for Exercising Safely
Allied health professionals are a group of healthcare providers whose role and expertise complement the work of physicians. These include specialists such as physical and occupational therapists, speech-language pathologists, nutritionists, and many more. They are just as important as your Movement Disorders Specialists and Neurologists, and play a vital role in creating a comprehensive, well-rounded Parkinson’s care team that caters to your individual needs and addresses your overall well-being. In this first episode of our Allied Health Spotlight series, we explore the benefits of including physical therapy in your care plan. Exercise is a vital component for people with Parkinson’s disease (PD) to maintain balance, mobility, and activities of daily living. It should be part of the standard practice of care for every person with PD. Research has shown that exercise is the only intervention with the potential to slow the progression of the disease. In this episode, Physical Therapist Tricia Brown, PT, DPT, NCS of Chapman University in California, who specializes in neurologic diseases, discusses some considerations for exercising safely, taking into account the particular needs of people with PD. She also talks about how to get and stay motivated to exercise and where to find classes or programs. Follow and rate us on your favorite podcast platform to be notified when there’s a new episode! Let us know what other topics you would like us to cover by visiting .
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Introducing Our Hospital Safety Guide
07/09/2024
Introducing Our Hospital Safety Guide
A hospital stay can be a stressful situation for everyone, whether you are the person receiving care or the support person providing comfort. People with Parkinson’s (PD) are at a higher risk of hospitalizations, so it is crucial to be prepared ahead of time for when the situation arises. The Parkinson’s Foundation recently created the Hospital Safety Guide, which is the updated and improved version of the former Aware in Care kit. The Guide incorporates information from the kit, but now highlights the “Five Parkinson’s Care Needs”, which is a tool for communicating your needs and priorities with hospital staff. It also includes a Hospital Planner checklist with step-by-step instructions on how to create a hospital “go bag” for emergencies. The Guide provides infographics and real-life examples from people with Parkinson’s and loved ones who have solved common problems relating to their PD when in the hospital. In this episode, Annie Brooks, Director of Strategic Initiatives at the Parkinson’s Foundation, discusses features of the new Hospital Safety Guide and how best to use it. Follow and rate us on your favorite podcast platform to be notified when there’s a new episode! Let us know what other topics you would like us to cover by visiting .
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¡EN ESPAÑOL! Colaborando con los trabajadores de salud comunitaria
03/11/2024
¡EN ESPAÑOL! Colaborando con los trabajadores de salud comunitaria
Los trabajadores de salud comunitaria (TSC o CHW, por sus siglas en inglés) o promotores ayudan a cerrar la brecha entre los profesionales de la salud y los miembros de la comunidad proporcionando educación y recursos culturalmente competentes y relevantes a la comunidad local. Desempeñan un papel vital en la interacción con la comunidad para identificar necesidades, proporcionar educación sanitaria y servir como recurso. Generan confianza y un sentimiento de conexión con los miembros de la comunidad, con el objetivo de empoderarlos para tomar decisiones informadas acerca de su salud y bienestar en general. La Parkinson’s Foundation puso en marcha un programa de formación para promotores para brindarles educación acerca de la enfermedad de Parkinson, con la esperanza de que esto los lleve a compartir y generar conciencia acerca de la enfermedad en sus comunidades. En este episodio, invitamos a Ilda Hernandez, una promotora que trabaja con Enlace en la zona de Chicago y que recientemente completó la formación. Habla de la importancia de trabajar en colaboración con las organizaciones locales y los sistemas de salud y destaca algunos desafíos que ha enfrentado durante sus esfuerzos de vinculación en su comunidad.
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Implications of Gene-Based Therapies for Parkinson’s Disease
05/28/2024
Implications of Gene-Based Therapies for Parkinson’s Disease
Gene-based therapy for Parkinson’s disease is an area of research that is currently being developed. It works by introducing genetic material into the brain, which can then “instruct” cells to produce compounds that can potentially alleviate symptoms of Parkinson’s. Although years have gone by since the first gene-based clinical trial, there is still much to learn before fully realizing its potential impact to treat Parkinson’s disease. In this episode, Movement Disorders Neurologist, Andrew Feigin, MD of New York University Langone Health discusses what gene-based therapy is, how it differs from cell-based therapy, different trials currently in progress, and considerations for future research.
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Celebrating Our Parkinson’s Foundation Volunteers
04/02/2024
Celebrating Our Parkinson’s Foundation Volunteers
This month, we are honoring and celebrating our Parkinson’s Foundation volunteers. Every volunteer helps make a difference in the everyday lives of people living with Parkinson’s disease, whether it’s by helping organize a local community walk, serving as a research advocate providing feedback and collaborating with scientists on research studies, or speaking at a panel for a community education program. There are many opportunities to get involved with the Foundation. In this episode, we highlight two volunteers who share their stories about how they became involved with the Parkinson’s Foundation.
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Exploring Carbidopa-Levodopa for Treating Parkinson’s Symptoms
03/05/2024
Exploring Carbidopa-Levodopa for Treating Parkinson’s Symptoms
Carbidopa-levodopa is considered the “gold standard treatment” for Parkinson’s disease. Levodopa works to replace levels of dopamine in the brain, thereby alleviating PD symptoms, while Carbidopa works to reduce adverse effects in the rest of the body. Although years have passed since the creation of this treatment, it is still commonly known to be an effective drug for reducing PD symptoms in a majority of people living with Parkinson’s. In this episode, we hear from Dr. Emily Peron, PharmD and Dr. Leslie Cloud, MD from Virginia Commonwealth University*. They discuss how and why carbidopa-levodopa continues to be a standard treatment for PD, long-term use considerations, its different forms, and when to recognize the need for potential medication adjustments. *Denotes a Parkinson's Foundation Center of Excellence
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Navigating Disparities, Ethics, and Stigma in the Black Parkinson’s Community
02/27/2024
Navigating Disparities, Ethics, and Stigma in the Black Parkinson’s Community
Black and African American people diagnosed with Parkinson’s disease (PD) face disparities in healthcare access and outcomes, potentially leading to decreased access to care, resources, and research opportunities. It is crucial to recognize their unique needs and experiences so that scientists can better understand how PD impacts diverse communities. The Parkinson’s Foundation aims to identify these healthcare disparities to better serve and support the community. In this second episode of our Black History Month special, Dr. Reversa Joseph, Neurologist, MDS at the Columbus Ohio VA, and Dr. Hiral G. Shah, Neurologist, MDS at Columbia University Medical Center, discuss current and historical disparities in research and treatment among the Black and African American PD community. They emphasize the importance of raising awareness about PD in this community, as well as in the medical space, to better understand the diverse lived experiences of the Black PD community. They also address the need to create more PD resources that reflect the voices of the community at hand.
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Community Conversations – Re(building) Trust and Sharing Resources
02/20/2024
Community Conversations – Re(building) Trust and Sharing Resources
Black and African American people diagnosed with Parkinson’s disease (PD) face disparities in healthcare access and outcomes, potentially leading to decreased access to care, resources, and research opportunities. It is crucial to recognize their unique needs and experiences so that scientists can better understand how PD impacts diverse communities. The Parkinson’s Foundation aims to identify these healthcare disparities to better serve and support the community. In this first episode of our Black History Month special, Kimberly Gamble, Program Coordinator at Atrium Health, and Lance Wilson, Licensed Social Worker and Center Coordinator at Jefferson Health’s Comprehensive Parkinson’s Disease and Movement Disorders Center, share real-life examples of outreach strategies that they have used when engaging with the Black and African American community to dispel common misconceptions about research studies, and emphasize the importance of representing and showing up for your community.
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Reintroducing Our Podcast Moderator
01/09/2024
Reintroducing Our Podcast Moderator
As we start the new year, we wanted to turn the tables on our podcast host and moderator, Dan Keller. Dan has hosted our Substantial Matters podcast series since it began more than five years ago. In this episode, we share some insight into his background, his experience, and how he came to host this series, starting as a laboratory researcher, to journalism student, to medical journalist and broadcaster. He talks about the rewards of reaching the Parkinson’s community through podcasts, and shares his suggestions for new, as well as seasoned, listeners. We invite our listeners to share your feedback by visiting . We want to hear your thoughts so we may continue to improve our podcasts and explore topics that are relevant to you.
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¡EN ESPAÑOL! Navegar su cuidado en los inicios del diagnóstico
12/11/2023
¡EN ESPAÑOL! Navegar su cuidado en los inicios del diagnóstico
Recibir un diagnóstico de la enfermedad de Parkinson (EP) puede ser una experiencia que cambie su vida, pero hay pasos que puede tomar desde el principio para ayudar a crear y mantener una vida de calidad con la EP. Aprender más acerca de la enfermedad, identificar una red de apoyo y formar un equipo de profesionales de la salud son algunos de los primeros pasos que hay que dar. Aunque pueda estar atravesando una oleada de emociones, no está solo y hay recursos disponibles para ayudarle a vivir mejor con la EP. En este episodio, hablamos con la Dra. Nicte Mejía González, neuróloga del Massachusetts General Hospital. Ella comparte su experiencia de primera mano al hablar con los pacientes, proporcionar el diagnóstico inicial de la EP y sus recomendaciones en los primeros pasos de la atención. ¡Siga y califíquenos en su plataforma favorita de podcasts para recibir notificaciones cuando salga un nuevo episodio! Cuéntenos que otros temas le gustaría que cubriéramos visitando .
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¡EN ESPAÑOL! Cuidar de una madre con Parkinson
11/21/2023
¡EN ESPAÑOL! Cuidar de una madre con Parkinson
Los cuidadores y aliados de cuidado brindan un apoyo inestimable a las personas que viven con la enfermedad de Parkinson (EP). Con el tiempo, el papel del cuidador puede tener que ajustarse y adaptarse a medida que avanza la enfermedad. Aunque el cuidado pueda parecer la tarea principal que lo abarca todo, es vital que usted sea capaz de encontrar el tiempo y los recursos necesarios para cuidar de sí mismo, antes de poder cuidar de su ser querido con la EP. Como parte del Mes Nacional de Cuidadores Familiares, la Parkinson’s Foundation se une a organizaciones de todo el país para honrar a los cuidadores durante este mes de noviembre. Invitamos a todos los miembros de la comunidad de la EP a que dediquen seis minutos a un cuidador en su vida. En este episodio, hablamos con Carla Velastegui, quien ha sido la cuidadora principal de su madre que vive con Parkinson desde hace más de 10 años. Ha visto de primera mano cómo ha progresado la enfermedad de su madre y comparte cómo su papel de cuidadora, hija y profesional en activo, ha ido cambiando a lo largo de los años. Aunque el ser cuidador conlleva desafíos, Carla comparte los recursos y las herramientas que le han ayudado a manejar su bienestar físico y mental para atenderse a sí misma y a su madre. Destaca la importancia de relacionarse con otros cuidadores que atraviesan experiencias muy similares, comparte su proceso de reflexión al revelar su papel de cuidadora en su trabajo e intenta educar mejor a la comunidad sanitaria y laboral acerca de la necesidad de brindar más apoyo a los cuidadores. ¡Siga y califíquenos en su plataforma favorita de podcasts para recibir notificaciones cuando salga un nuevo episodio! Cuéntenos que otros temas le gustaría que cubriéramos visitando .
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Caregiving Over the Years
11/14/2023
Caregiving Over the Years
Parkinson’s disease is a chronic and progressive disease that affects both the person with Parkinson’s and the care partner. Considerations need to be made to deal with the present challenges, while also anticipating future caregiving needs. Patsy Ponder Dalton was the caregiver for her husband, David, since he was diagnosed with Parkinson’s at the age of 44. Even after David’s passing, she is still a highly engaged facilitator for two Parkinson’s support groups in Missouri. In this episode, she provides insight into dealing with the challenges of the disease as it progressed, along with the changes in her caregiving responsibilities. She discusses the dynamic of her and David’s shared decision making over time, provides suggestions for mitigating the physical challenges of the disease by adapting her home environment, and as a care partner, how Patsy needed to make time for her own well-being. Even though David is gone, she still finds comfort and motivation in being part of the Parkinson’s community and maintaining her role in support groups.
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Research Series: Getting Involved in Research with Young-Onset PD
10/31/2023
Research Series: Getting Involved in Research with Young-Onset PD
Early-onset, also called Young-onset Parkinson’s disease (YOPD), affects about 4% of the one million people with Parkinson’s disease (PD) in the United States, with a diagnosis before age 50. Although there are many characteristics similar to late-onset PD, there are a few differences such as disease progression, response to medications, and genetic risk factors. Because of the earlier age of onset, YOPD may also differ in how it affects an individual’s social relationships, marriage, parenting, family life, employment, and finances. Participating in research studies is one way that people with YOPD can help reveal the role of genetics and other factors in how the disease occurs and manifests in younger people. People with YOPD can most often still live a happy and productive life. Support groups, family support, and knowledge gained through groups, articles, conferences, and webinars can improve one’s care, functioning, and quality of life. Finding a comprehensive health care team that can offer any needed physical, social, emotional, and spiritual services is also important. The Parkinson’s Foundation and its Helpline, as well as community resources, are good places to start. Today’s guest is Israel Robledo, a Parkinson’s Foundation Research Advocate who has YOPD. Research Advocates partner with researchers to design trials, provide recommendations, and report study results to the Parkinson’s community. They are trained experts with lived experiences and use their voice and perspective to inform key decisions in Parkinson's research studies. In this episode, Israel shares his experience of participating in research studies throughout the course of his disease. This episode is sponsored by Biogen’s Luma study, for more information about Luma, visit LumaStudy.com.
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Atypical Parkinsonism Series: Unique Care Needs of PSP, CBD and MSA and Helpful Resources
10/17/2023
Atypical Parkinsonism Series: Unique Care Needs of PSP, CBD and MSA and Helpful Resources
Considered “atypical Parkinsonian syndromes,” over half of people with progressive supranuclear palsy (PSP), corticobasal degeneration (CBD) and multiple system atrophy (MSA) are initially misdiagnosed with Parkinson’s disease (PD) due to similarities in early symptoms as well as lack of awareness of these rare, neurodegenerative diseases among many healthcare professionals and the general public. This is the third of three podcast episodes within our atypical parkinsonism podcast series, organized in partnership with CurePSP and designed to address the unique care needs across the disease stages of PSP, CBD and MSA. Jessica Shurer, Director of Clinical Affairs and Advocacy at CurePSP, and Nancy Montgomery, who cared for her husband who was diagnosed with progressive supranuclear palsy, cover common challenges experienced by people living with PSP, CBD or MSA and describe helpful resources and roles played by healthcare teams that support the quality of life of patients and family care partners. Jessica Shurer, Nancy Montgomery, and podcast host, Dan Keller, have disclosed that they have no relevant financial disclosures.
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Atypical Parkinsonism Series: Treatment and Interdisciplinary Approach to Care
10/03/2023
Atypical Parkinsonism Series: Treatment and Interdisciplinary Approach to Care
Considered “atypical Parkinsonian syndromes,” over half of people with progressive supranuclear palsy (PSP), corticobasal degeneration (CBD) and multiple system atrophy (MSA) are initially misdiagnosed with Parkinson’s disease (PD) due to similarities in early symptoms as well as lack of awareness of these rare, neurodegenerative diseases among many healthcare professionals and the general public. This is the second of three podcast episodes within our atypical parkinsonism podcast series, organized in partnership with CurePSP and designed to address the treatment interdisciplinary approach of PSP, CBD and MSA. In this second episode of the series, Heather Cianci, Outpatient Neurological Team Leader and founding therapist of the Dan Aaron Parkinson’s Rehabilitation Center, Penn Therapy & Fitness at Pennsylvania Hospital in Philadelphia, Pennsylvania and Julia Wood, Director of Professional and Community Education at the Lewy Body Dementia Association, cover the treatment and interdisciplinary approach to care for atypical parkinsonism. Julia Wood, Heather Cianci, and podcast host, Dan Keller, have disclosed that they have no relevant financial disclosures.
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Research Series: Parkinson’s Foundation Expansion of PD GENEration to Puerto Rico and the Dominican Republic
09/19/2023
Research Series: Parkinson’s Foundation Expansion of PD GENEration to Puerto Rico and the Dominican Republic
Researchers have discovered several genes that are associated with the risk of developing Parkinson’s disease (PD). To better understand this relationship, the Parkinson’s Foundation is conducting a large population study, PD GENEration: Mapping the Future of Parkinson’s Disease, a national initiative that offers genetic testing and counseling for Parkinson's-related genes at no cost for people with PD. Since different ethnic groups may have differences in their genetic backgrounds, possibly affecting the course of their disease, PD GENEration is now expanding beyond the borders of the mainland U.S. to Hispanic communities in Puerto Rico and the Dominican Republic. Our guest in this episode is Rebeca De Leon, Associate Director of the Clinical Research Department at the Parkinson’s Foundation. She explains why it is important to include people of diverse backgrounds in the study, how and where the Foundation is reaching out to enroll people from a range of communities in PD GENEration, and ultimately, how participation in the study will help scientists better understand the disease.
/episode/index/show/parkinson/id/28036452
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Atypical Parkinsonism Series: Overview, Diagnosis and Prevalence
09/05/2023
Atypical Parkinsonism Series: Overview, Diagnosis and Prevalence
Considered “atypical Parkinsonian syndromes,” over half of people with progressive supranuclear palsy (PSP), corticobasal degeneration (CBD)/corticobasal syndrome (CBS), and multiple system atrophy (MSA) are initially misdiagnosed with Parkinson’s disease (PD) due to similarities in early symptoms as well as lack of awareness of these rare, neurodegenerative diseases among many healthcare professionals and the general public. This is the first of three podcast episodes within our atypical parkinsonism podcast series, organized in partnership with CurePSP and designed to address the overview, treatment and care of PSP, CBD and MSA. In this first episode of the series, Dr. Alex Pantelyat, Associate Professor of Neurology at Johns Hopkins University School of Medicine shares an overview of atypical parkinsonism, overlaps and differences with Parkinson's disease, the red flags and how PSP, CBD and MSA are diagnosed. Dr. Pantelyat has disclosed that he is a Scientific Advisory Board Consultant for MedRhythms, Inc. and a consultant for both Ferrer Internacional, S.A. and SciNeuro Pharmaceuticals. Podcast host, Dan Keller, has disclosed that he has no relevant financial disclosures.
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