Substantial Matters: Life & Science of Parkinson’s

Allied health professionals are a group of healthcare providers whose role and expertise complement the work of physicians. They 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 attends to your individual needs and addresses your overall well-being. Many people are familiar with physical and speech therapists, but fewer recognize the valuable benefits of working with an occupational therapist (OT). An OT helps identify the activities that you enjoy and ensures strategies are in place so you can continue doing what matters most. They work with you to adapt your environment, tap into your strengths, and create realistic strategies so you can keep living life on your terms. In this episode, Karyssa Silva, MS, OTR/L, CLT, an occupational therapist at Aldersbridge Physical Therapy & Wellness Outpatient Center in Rhode Island, shares how she helps people with Parkinson’s with daily tasks and activities that bring them joy. She works closely with people with PD and their loved ones to address physical and mental challenges, empowering them to stay engaged in the activities they value the most. During the episode, Karyssa mentions that people sometimes walk away from their OT appointment and wonder if they missed something important. Here’s a worksheet to help organize your thoughts and make the most of your time during appointments. 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.

People with Parkinson’s disease (PD) may hear, whether through word of mouth or the internet, about herbs or supplements that claim to ease PD symptoms. It’s important to recognize that nutritional supplements are not federally regulated, and there is limited research supporting their overall effectiveness. You should always speak with your healthcare provider before starting a new medication or supplement. Nutritional supplements can include herbs, vitamins, or other drugs that are often available without a prescription. Since these products are not formally regulated, there is a high risk for potentially dangerous drug interactions when mixed with other medications, regardless of if they are prescribed by a doctor or available over the counter. In this episode, we speak with Dr. Angela Hill, a pharmacist and professor at the University of South Florida, to better understand the precautions of taking supplements while living with PD. She discusses the potential side effects and risks of taking drugs without fully knowing what’s in their ingredients, as well as the warning signs to watch for. She shares tips for reading and evaluating labels and offers guidance on the type of questions to ask a pharmacist to help decide whether the supplement may be a good fit based on your specific health condition. During the episode, Dr. Hill mentions additional resources for evaluating herbal medications and understanding medication timing. Click here to view the articles, along with her contact information for any follow-up questions. 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.

Medical appointments can feel overwhelming – there may be many questions on your mind and not enough time to address everything with your doctor. Preparing a list of questions and concerns ahead of time can help you focus on what matters most to you and ensure you’re actively advocating for your care. To support this process, the Parkinson’s Foundation created a worksheet that offers a step-by-step guide for identifying and prioritizing your top concerns. Advocating for yourself during appointments can be challenging, and at times, uncomfortable. Speaking up is essential to make sure your top needs are heard and addressed. In this episode, we speak with Dr. Taylor Rush, a Health Psychologist and director of Behavioral Services and Interdisciplinary Programs at the Cleveland Clinic in Ohio. She shares her recommendations for how to prepare before, during, and after a visit with your Parkinson’s doctor, take a proactive role in managing your care, and access helpful resources to support you throughout your Parkinson’s journey. 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.

Las caídas y los problemas de equilibrio 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 parkinson.org/podcastencuesta.

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.