Substantial Matters: Life & Science of Parkinson’s

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 parkinson.org/feedback.

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 PD Solo 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 parkinson.org/feedback.

La línea de ayuda 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.

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 PERSEVERE 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 parkinson.org/feedback.

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 parkinson.org/feedback.

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.

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 parkinson.org/feedback.

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. 

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.

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.

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. 

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.

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.

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.

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.

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.

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

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.

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.

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 Parkinson.org/Feedback. We want to hear your thoughts so we may continue to improve our podcasts and explore topics that are relevant to you.

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.

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.

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.

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.

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.

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.

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.

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 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.

Typical treatment of Parkinson's disease (PD) consists of oral levodopa/carbidopa, along with other oral medications. Although there is no one-size fits all treatment, people with PD may experience more “off” periods, or symptom fluctuations, as the disease progresses. In this case, non-oral treatments, such as pump therapy, may be another option to consider.   Examples of currently available pump therapies for Parkinson's include medication, namely apomorphine, delivered under the skin (subcutaneous) from a pump, or a gel containing levodopa/carbidopa delivered by a pump inserted through the skin directly into the upper part of the small intestine (intestinal gel pump).   In June 2023, expert Parkinson's clinicians and researchers led a course in Poland about current pump therapies and what may be coming in the future. In today's episode, Professor Ray Chaudhuri, one of the course leaders and Director of the Parkinson's Foundation Centre of Excellence at King's College Hospital in London, discusses some of the topics in the course, including who would be a good candidate for pump therapy, the benefits and risks, and recent developments in pump treatment options.

Variants of several genes have been identified that raise the risk of developing Parkinson's disease (PD). PD GENEration: Mapping the Future of Parkinson's Disease is the Parkinson's Foundation groundbreaking initiative that seeks to uncover the relationship between genetics and one's risk for PD. The goal is to eventually help people better manage their disease, facilitate research into better treatments, and potentially, find a cure. The study is now expanding to actively enroll people of diverse backgrounds. Variants of certain genes associated with the risk of developing PD have different frequencies among different populations. Besides reaching out to Black and Asian communities in the mainland United States, PD GENEration is now expanding to Hispanic communities in Puerto Rico as well as in the Dominican Republic (DR). Although every person's disease is unique to them, understanding genetic differences across broad groups of people may help explain why a person's experience with the disease differs from others. That is why it is important for PD GENEration to enroll people from diverse communities, where genes associated with the disease may occur at different frequencies. Our guest in this episode is Amasi Kumeh, Director of Research Partnership at the Parkinson's Foundation. She explains why it is important to include people of diverse backgrounds in the study and how and where the Foundation is reaching out to enroll people from a diverse range of communities in PD GENEration.

Existen diversas causas de los problemas del sueño que pueden experimentar las personas con Parkinson. Entre los trastornos del sueño más comunes están la apnea del sueño (asociada normalmente a un ronquido fuerte), el insomnio y el trastorno donde las personas actúan los sueños mientras duermen.   También sabemos que los problemas emocionales, que son síntomas no motores del Parkinson, pueden estar ligados a los problemas del sueño. Por ejemplo, si uno tiene depresión o ansiedad, puede llevarlo a dormir mal en general.   En este episodio de podcast, escuchamos al doctor Alberto Ramos, profesor de neurología clínica y director de investigación del Programa de Trastornos del Sueño en la University of Miami Miller School of Medicine acerca de los efectos del Parkinson sobre el sueño. El doctor Ramos comparte formas de mejorar el sueño, tratamientos que existen para estos problemas y consejos para las personas con la EP que están experimentando estos problemas, así como para las parejas que experimentan interrupciones debido a estos trastornos del sueño.

Of the one million people living with Parkinson's disease (PD) in the United States, nearly one-third of them will have a hospital encounter each year. When hospitalized, three out of four people with PD will not receive their medications on time, possibly leading to worsening symptoms, medical emergencies, and a significantly increased length of stay, greatly increasing costs to the medical system overall.   To address this problem, the Parkinson's Foundation developed key tools and resources for patients and providers. Today's guest, Peter Pronovost, MD, PhD, a major force in advancing hospital safety, helped develop recommendations for making hospitals safer for people with PD, which includes standards of care. Dr. Pronovost practices critical care medicine and is Chief Quality Officer and Chief Clinical Transformation Officer at University Hospitals in Cleveland, Ohio.

Intimacy is a significant part of any relationship, and sexuality is an important aspect of intimacy. Parkinson's disease (PD) can present challenges for both intimacy and sexuality, both for the person with PD and for the care partner. The Parkinson's Foundation Helpline can be a good resource for coping with these issues. In this episode, Anna Moreno, MSW, a Senior Parkinson's Information Specialist at the Parkinson's Foundation, highlights some of the more common questions that care partners pose about sexuality to the Helpline.   Although she herself is not a therapist, she can direct callers to appropriate resources. Gila Bronner, MPH, MSW is a Certified Sex Therapist and Supervisor of the Sex Therapy Services at the Tel-Aviv Sourasky Medical Center in Israel. In this episode, she provides insight into these typical problems that care partners report, and she offers some recommendations to help overcome them. For many years, she has researched and provided therapy and advice about intimacy and sexuality relating to PD in Israel and around the world.

Since routine outpatient procedures may pose special needs and risks for someone with Parkinson's disease (PD), extra planning is in order for the period before, during, and after the procedure. The procedures may be medical or dental, for example, teeth cleanings, colonoscopy, or magnetic resonance imaging (MRI).   Fortunately, the Parkinson's Foundation has developed a course that highlights key recommendations and strategies to promote optimal care and health outcomes for people with PD during planned and unplanned hospital stays, which can include inpatient, outpatient, and emergency department hospital encounters.   In this podcast episode, movement disorders neurologist Muhammad Nashatizadeh, MD of the University of Kansas Medical Center in Kansas City, a Parkinson's Foundation Center of Excellence, discusses how people with PD can incorporate this same safety protocol to ensure optimal outcomes when they plan for and have routine outpatient healthcare procedures.

There's a new and greater understanding of the relationship of Parkinson's disease (PD) and art. Engaging in artistic practices can enhance mood, cognitive function, and enjoyment of life for people with PD. Importantly, how art causes these effects is giving greater insight into the neurobiological basis of how people in general create and respond to art. Central to this insight is the role of the neurotransmitter dopamine. In this episode, Prof. Bas Bloem, Director of the Parkinson's Foundation's Center of Excellence at Radboud University Medical Center in Nijmegen, the Netherlands, explores the emerging importance of incorporating art in the treatment of PD and the role of dopamine for enhancing people's enjoyment and creativity. Dopamine has been called the “happiness hormone,” but it may also be the creativity hormone.

Besides being a movement disorder and affecting other physical functions, such as the digestive system, blood pressure control, and sleep, Parkinson's disease (PD) can alter cognition, other mental functions, and mood. Apathy can be part of the disease, resulting in a lack of interest, enthusiasm, or motivation. It can result in a vicious cycle, decreasing one's motivation to exercise and follow medication schedules, which are essential components of managing PD, including mood.   In this episode, movement disorder neurologist Nabila Dahodwala, MD, MS, Director of the Parkinson's Foundation Center of Excellence at the University of Pennsylvania, describes what apathy is, how it can affect a person's life, and ways to help alleviate it and gain motivation to move through exercise.

Las investigaciones han encontrado que 3 de cada 4 personas con la enfermedad de Parkinson no reciben medicamentos a tiempo cuando están internadas en el hospital. Cuando esto ocurre, 2 de cada 3 personas experimentarán complicaciones innecesarias.   Con visitas hospitalarias más a menudo y una alta sensibilidad a la frecuencia y dosificación de los medicamentos para la enfermedad de Parkinson, las personas con Parkinson enfrentan grandes riesgos en un hospital.   En este episodio, hablamos con Adrian Mireles acerca de sus experiencias en el hospital desde su diagnóstico de Parkinson. Adrian comparte los desafíos que ha enfrentado cuando ha estado hospitalizado y qué le resultó útil durante esas visitas, como el kit de seguridad hospitalaria Aware in Care de la Parkinson's Foundation.   Adrian también explica lo que significa ser su propio promotor y comparte consejos para otras personas con la enfermedad de Parkinson acerca de cómo conseguir una mejor atención en el hospital.

A common misconception is that palliative care implies hospice, when in fact, palliative care can and should be a component of the treatment of any serious disease, including Parkinson's. The word “palliation” means providing relief from pain and other symptoms, with a goal of improving quality of life. Individuals receiving palliative care also may receive other treatments, with curative intent if available. On the other hand, palliation can be a part of hospice, but in hospice, a person no longer has curative options or chooses not to pursue them. In this episode, Maggie Ivancic, MSW, LCSWA, the Clinical Social Worker and Parkinson's Foundation Center of Excellence Coordinator at the University of North Carolina at Chapel Hill, discusses aspects of palliative care – how it differs from hospice, its intent, and how and where to access it.

Aunque los medicamentos suelen ayudar a minimizar las fluctuaciones motoras de la enfermedad de Parkinson, hay ocasiones en las que la medicación no es suficiente y se plantean opciones de tratamiento avanzadas.   Es importante explorar las opciones quirúrgicas con su especialista en la EP si esto es algo que puede considerar. La cirugía a menudo se reserva para aquellos que han optimizado y agotado los medicamentos para el temblor de Parkinson o que experimentan profundas fluctuaciones motoras.   En este episodio de podcast, escuchamos al Dr. Gonzalo Revuelta, profesor asociado de neurología y director médico del programa de estimulación cerebral profunda en MUSC, la Medical University of South Carolina, sobre las opciones de tratamiento quirúrgico disponibles para las personas con la enfermedad de Parkinson.

Historically and even today, Parkinson's disease (PD) is a clinical diagnosis, wherein a physician observes signs of the disease and an individual reports symptoms. In routine practice, there is no blood test, other biomarker, or machine to make the diagnosis or to track progression of the disease. But given advances in computing power and through computer analysis of massive amounts of data, artificial intelligence (AI) may add a valuable tool to the diagnostic process. In one form of AI, a computer analyzes a stream of input data to discern patterns that represent an outcome of interest.   A recent study used AI to non-invasively collect and analyze data on breathing patterns, using one night of breathing signals from 7,671 individuals with PD as they slept. One of the co-authors of the study was Aleksander Videnovic, MD, MS of Harvard Medical School and Massachusetts General Hospital, where he is Chief of the Division of Sleep Medicine. The hospital is a Parkinson's Foundation Center of Excellence. In this episode, he explains how the study was done, its findings, and how AI may be useful for diagnosis of PD, gauging its severity, following its progression, and possibly, in the future, assessing risk of PD before its clinical diagnosis.

“Off” episodes can become a troubling aspect of Parkinson's disease (PD), especially as the disease progresses. These are periods in the day when the effect of levodopa medication wears off, either suddenly or gradually, with a return of motor or non-motor symptoms.   The good news is that there are several ways to try to minimize “off” episodes, including medication timing, medication adjustments, and add-on medications. In this podcast episode, Dr. George Kannarkat, a movement disorders fellow at the University of Pennsylvania in Philadelphia, a Parkinson's Foundation Center of Excellence, discusses “off” episodes, their causes, strategies that people can use today to minimize them, and what new technologies are here or coming along to help lessen them.

La visión es uno de los sentidos que tenemos que está conectado directamente con el sistema nervioso central. Cuando hay alguna enfermedad neurológica o algún problema que afecta esta área del cerebro, podemos esperar cambios en la visión.   En este episodio, hablamos con el doctor Juan Ramírez-Castañeda, profesor asociado de neurología en la University of Texas at San Antonio y director del programa de la enfermedad de Parkinson y otros trastornos del movimiento, acerca de estos cambios en la vista relacionados con el Parkinson.   El doctor Ramírez-Castañeda explica cuáles son los síntomas visuales más comunes para las personas con Parkinson, como visión doble, ojos resecos, problemas con la percepción de profundidad y alucinaciones visuales y cómo pueden tratarse los cambios en la visión.

With Parkinson's disease (PD), it's essential to know where to find a movement disorder neurologist, a physical or occupational therapist, social services to help with daily activities, and agencies that can advise on elder issues. When you don't know that certain services even exist, looking for them is impossible. This is where the Parkinson's Foundation Helpline can be an essential resource. Helpline staff have broad knowledge about what services may be appropriate to address certain problems, and they can direct callers to these services.   One social worker has described himself like the Yellow Pages. He cannot do everything for his clients, but he acts like a directory of resources that can help them. So, too, is the Parkinson's Foundation Helpline a valuable compendium of services for many of the needs of people with PD. In this episode, Social Worker Amanda Janicke, LCSW, an information specialist on the Parkinson's Foundation Helpline, gives insight into what the Helpline can provide, and she provides examples of some agencies that can help people with PD.

An early Parkinson's diagnosis is the first step to getting Parkinson's symptoms under control and living well with Parkinson's. Getting a PD diagnosis is also one of the first obstacles many people in the Black PD community experience.   Research has shown racial disparities in the diagnosis and treatment of Parkinson's – finding that Black people with PD are diagnosed at a later disease stage than white people and are less likely to be diagnosed compared to other racial and ethnic groups. These differences may be due to Black patients being historically excluded from research and to a range of health disparities, which cause them to systemically experience decreased access to resources and care due to social, economic and environmental disadvantages.   Working with specialists who understand and treat Parkinson's can help you better manage your symptoms and reduce complications. Since people in the Black community are often less likely to see a PD specialist, awareness of PD in Black communities is essential.   In this episode for Black History Month, we speak with a woman who has been very involved in raising awareness of PD among the Black community. Since her diagnosis, Denise Coley has become engaged in PD organizations. She served on the Parkinson's Foundation's People with Parkinson's Advisory Council, and she is currently the Chair of the Mission and Outreach Committee of the California Parkinson's Foundation Advisory Council.

Parkinson's disease (PD) depression may be a biological part of the disease itself, resulting from PD-related changes in brain chemistry. Untreated depression and other mood disorders can have a greater impact on well-being than even common motor symptoms.   Depression affects at least 50 percent of people with PD sometime in the course of their disease, but it is often under-recognized and, therefore, under-treated, even though effective treatments exist, both pharmacologic and nonpharmacologic. Treating depression can be a significant way to improve quality of life.   Veronica Bruno, MD, MPH, a neurologist specializing in movement disorders at the University of Calgary in Alberta, Canada, a Parkinson's Foundation Center of Excellence, discusses depression, the problem of under-diagnosis, and the benefits of recognition and treatment.

Parkinson's disease (PD) affects several automatically regulated bodily functions, such as digestion, bowel activity, sweating, and blood pressure control, together known as autonomic functions. Low blood pressure, or hypotension, is common in PD, and high blood pressure (hypertension) can also occur. They may be a result of the disease itself or be caused by some of the medications to treat it. Hypotension, in particular, can be dangerous, leading to dizziness, fainting, falls, and fractures.   Up to 60% of people with PD may experience orthostatic hypotension at some point, which is a drop in blood pressure within three minutes of changing to a more upright position, that is, from sitting to standing or from a lying position to sitting or standing.   In this episode, Jeni Bednarek, RN, BSN, ACRP-CP, nurse team coordinator and associate director of education of the Parkinson Center of Oregon in the Parkinson's Center and Movement Disorders Program of the Oregon Health and Science University in Portland, a Parkinson's Foundation Center of Excellence, discusses several ways for individuals with PD to cope with blood pressure problems, including pharmacologic and non-pharmacologic methods, as well as working with their health care providers to reach a good blood pressure balance.

Researchers are accumulating evidence about how the environment affects our health and our diseases – both our internal and external environments. A significant part of our internal environment is the gut microbiome, that is, the bacteria, fungi, and viruses that naturally inhabit our intestinal tracts. The external environment is everything around us that we eat, inhale, or come into contact with, including industrial chemicals and pesticides.   Studies have shown that people with Parkinson's disease (PD) harbor distinct gut microbiomes. Environmental exposures and genetic factors can affect the composition of the microbiome. Exposure to pesticides is a leading environmental risk for many neurological diseases, including PD. Tim Sampson, PhD, a cell biologist at Emory University in Atlanta, Georgia, a Parkinson's Foundation Center of Excellence, received one of the Foundation's Stanley Fahn Junior Faculty Awards to study how genetics and Parkinson's-linked pesticides affect the gut microbiome. The aim is to see how these interactions may trigger Parkinson's symptoms within the gut as well as those originating in the brain, with a goal of gaining insight at the earliest stages of the disease to better prevent PD and develop new therapeutic targets.

Adult children of a parent with Parkinson's disease (PD) often want to help their parent but do not know how to begin. If they get involved early, they can detect changes that need to be addressed later on. A good first step is learning about the disease, its symptoms, treatment, and course. From there, they may want to become an active part of the support team that each person with PD should have from the time of diagnosis. Adult children can help schedule doctor's appointments; attend them with their parent, navigate insurance and other financial concerns, and keep their parent moving and socially involved by engaging in sports and activities with them. This all depends on the parent's willingness to have their children help out with some aspects of their lives.   In this episode, Social Worker Kelly Arney, MSSW, outreach coordinator for the Parkinson's Foundation Center of Excellence at Vanderbilt University Medical Center in Nashville, has several good pieces of advice for different situations, including communicating with the parent about how much help they will accept without giving up their autonomy.

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.

Medical problems often do not follow a schedule, and it can be frustrating to get them addressed when the next doctor appointment is weeks or months away. It's important to have a plan about what to do for support between clinic appointments. A good first step is to discuss the issue with your health care team and to arrange to have a designated person or point of contact should such a situation arise. Heather Russell, RN, Coordinator of the Parkinson's Foundation Center of Excellence at the London Health Sciences Centre in London, Ontario, Canada, is that person for her clinic. In this episode, she describes how she helps her patients when they have a medical problem related to their Parkinson's disease and their next scheduled clinic visit is some time away.

Ser trabajadora social en una clínica significa ser parte del equipo médico y brindar atención a las personas que viven con Parkinson y a sus familias.   En este episodio, hablamos con Adriana González, trabajadora social en el Centro para el Parkinson y Otros Trastornos del Movimiento de la University of California, San Diego. Como trabajadora social, Adriana ayuda a las familias y a los cuidadores a identificar recursos comunitarios y los apoya cuando enfrentan situaciones difíciles.   La meta de Adriana es conocer a las familias desde el inicio de la enfermedad para hablar acerca de los diferentes periodos y crear un plan antes de llegar a un momento de crisis.   Para Adriana, lo más importante es concientizar a la comunidad de habla hispana acerca de la enfermedad de Parkinson para mejorar el manejo médico de esta enfermedad y apoyar a más familias y cuidadores que están tratando de ayudar a su ser querido con Parkinson.   Como noviembre es el Mes Nacional de Cuidadores Familiares, hablamos con Adriana acerca de la importancia del autocuidado: un plan que garantiza que los cuidadores o aliados de cuidado estén atentos a su propio bienestar.