Substantial Matters: Life & Science of Parkinson’s: Recent Episodes
Parkinson’s Foundation
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.
Sleep problems affect more than 75% people with Parkinson's disease (PD) and can have a significant impact on day to day life. Common challenges include difficulty falling or staying asleep, excessive sleepiness during the day, and acting out dreams while asleep.
This episode focuses on REM (Rapid Eye Movement) Sleep Behavior Disorder, or RBD, a condition in which people may verbally and/or physically act out their dreams. These instances can increase the risk of injury for both the person with Parkinson's and their bed partner, making awareness and symptom management especially important.
We invited Dr. Aleksandar Videnovic, Chief of the Division of Sleep Neurology at Massachusetts General Brigham, along with Caron Gan and John Poma, members of the NAPS Consortium on REM Sleep Behavior Disorders, to share insights on what RBD is, why it happens, and strategies for managing symptoms.
Key Takeaways:
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Growing research shows that RBD can precede a Parkinson's diagnosis by several years.
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RBD symptoms can change over time and may include physically and/or verbally acting out dreams.
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Sleep disturbances and fragmented sleep can contribute to fatigue and may worsen other PD symptoms.
Practical Strategies:
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Remove objects near the bed that may cause injury.
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Lower the bed or mattress to reduce the risk of falls.
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Create a consistent sleep schedule.
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Keep a sleep diary to track symptoms and patterns.
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Find an "RBD buddy" to share stories and tips.
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Muchas personas asumen que los problemas para tragar, o la disfagia, solo ocurren en las etapas más avanzadas de la enfermedad de Parkinson (EP). En realidad, como estos cambios pueden desarrollarse gradualmente y aparecer antes de lo esperado, la detección temprana es fundamental. Saber qué señales buscar puede ayudar a las personas con Parkinson y a sus seres queridos a obtener el apoyo y la atención que necesitan.
En la parte 1 de esta serie de dos partes, hablamos con Martha Suárez Torres, terapeuta del habla y el lenguaje y aliado en el cuidado de su esposo con Parkinson, sobre cómo los cambios al tragar pueden afectar a las personas con la EP y cuándo es momento de buscar ayuda de un especialista. También comparte estrategias para reconocer cambios en casa, manejar la deglución de manera segura y explica cómo los familiares y seres queridos desempeñan un papel importante al informar cambios con el tiempo.
Manténgase atento a la parte 2, donde continuamos nuestra conversación con Martha mientras habla sobre cómo abordar los desafíos de comunicación al cuidar a alguien con Parkinson.
Durante el episodio, Martha menciona un curso en línea sobre cómo entender el papel de la atención neuropaliativa para apoyar a un ser querido con Parkinson. Obtenga más información aquí, actualmente disponible en inglés.
Recursos en español:
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Lea nuestra hoja informativa sobre "el habla y la deglución (tragar) en el Parkinson".
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Aprenda cómo puede ayudar un terapeuta del habla y el lenguaje.
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Explore más sobre los cambios en el habla y la deglución en el Parkinson.
Puntos clave:
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La detección temprana es fundamental para reconocer los cambios al tragar y recibir el tratamiento y el apoyo adecuados.
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Los cambios al tragar pueden ser difíciles de detectar. Conocer las señales comunes puede ayudar a las personas con la EP y a sus aliados en la atención a notar un cambio y buscar apoyo.
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Los especialistas del habla y el lenguaje con frecuencia pueden brindar atención en persona o por telesalud. Si el acceso a la atención es limitado, aprender estrategias prácticas y saber cuándo buscar apoyo profesional puede ayudar a las personas a seguir manejando los síntomas en casa.
Interest in the gut microbiome and its potential role in Parkinson's disease (PD) continues to grow. Before exploring the latest research, it's helpful to understand what the microbiome is, the role it plays in overall health, and why researchers are studying its connection to Parkinson's.
In this episode, we speak with Dr. Lisa Deuel from the University of Vermont Medical Center about what researchers currently know, and don't know, about the relationship between the gut and Parkinson's. She explains the gut-brain connection and discusses common gastrointestinal issues experienced by people with Parkinson's, such as constipation and gastroparesis (limited ability to empty the stomach). She wraps up by sharing practical strategies to support gut health.
Key Takeaways:
- Research is still limited on whether changes in the gut microbiome may contribute to the risk of developing Parkinson's disease.
- Gastrointestinal issues, including constipation and gastroparesis, are common non-movement symptoms of Parkinson's.
- Practical Strategies for Supporting Gut Health:
- Stay hydrated and drink water
- Eat a high fiber diet in moderation
- Consider probiotics
- Stay active and moving
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Changes in speech and swallowing are common in Parkinson's disease (PD), but they can be difficult to recognize without understanding how they may present. These changes often happen because of lower dopamine levels in people with PD, which can make automatic actions- like speaking loud, clear sentences without requiring much thought- more difficult.
Parkinson Voice Project developed the SPEAK OUT! Therapy Program to help people with PD speak and swallow with intention, addressing these challenges.
In the episode, we speak with Samantha Elandary, MA, CCC-SLP, President and Chief Executive Officer of Parkinson Voice Project. She discusses the benefits of working with a Certified SPEAK OUT! Provider, how to identify signs of speech and swallowing difficulties, and offers tips for incorporating these techniques into daily life. Toward the end of the episode, Samantha demonstrates a brief speech exercise that takes just a few minutes but can provide meaningful benefits when practiced consistently and intentionally.
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There are countless ways to get involved in raising awareness about Parkinson's disease (PD)- whether it's striking a conversation with someone at the grocery store, signing a petition, or meeting with your local members of congress. At its core, policy change begins with meaningful conversations. The more we openly talk about PD, the more we build understanding, urgency, and momentum to shape the future of Parkinson's care and treatment.
The Parkinson's Foundation recently launched the Advocacy Center as a resource to support anyone looking to get more involved in advocacy. Through this platform, people can receive the latest policy news and find opportunities to engage their legislators to help make an impact in the Parkinson's space.
In this episode, we speak with Ken Chason, a Parkinson's Foundation Ambassador, US Veteran, and person with Parkinson's, alongside Andi Lipstein Fristedt, the Executive Vice President and Chief Strategy and Policy Officer at the Parkinson's Foundation. Drawing on their experiences in public service, they highlight the many ways to get involved in advocacy, and why this time is especially critical for accelerating change in the Parkinson's policy realm.
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The standard treatment plan for Parkinson's disease (PD) typically begins with medications to help manage symptoms. As the disease progresses, symptoms may worsen or medications may become less effective over time. If this happens, more advanced treatment options may be considered, such as Deep Brain Stimulation (DBS), pump medications, or focused ultrasound. Understanding the potential benefits and risks of each option, and discussing them with your care team, can help you make an informed decision about the next steps in your treatment plan.
In this episode, we speak with Dr. Arjun Tarakad, Associate Professor of Neurology at Baylor College of Medicine, a Parkinson's Foundation Center of Excellence, and Samantha Helton, a person living with young-onset Parkinson's. Mrs. Helton shares her first-hand experience undergoing DBS, including what motivated her to say "yes" to surgery, while Dr. Tarakad discusses what to expect before, during, and after DBS surgery.
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People with Parkinson's disease (PD) are at a higher risk of being hospitalized and often face even greater challenges once admitted. Of the more than 1 million people living with PD in the US, nearly one third are hospitalized each year. During a hospital stay, they are more likely to receive the wrong medication, encounter missed or delayed dosages, receive medications known to worsen PD symptoms, experience limited mobility, and face a higher risk of dysphagia (difficulty swallowing). These gaps in care can lead to avoidable complications, longer hospital stays, and worse overall health outcomes.
The Parkinson's Foundation Hospital Care Initiative, launched in 2020, aims to eliminate preventable harm and promote higher quality PD inpatient care. Through this initiative, the Foundation provides hospitals with the opportunity for education, training, expertise, and the guidance necessary to improve hospital care for people with PD.
As a component of this work, the Parkinson's Foundation Hospital Care Learning Collaborative was established to foster a peer-led group of hospitals, emergency departments, and health systems committed to improving care for people with PD. This national network of hospital and clinical leaders share best practices and lessons learned from national experts to enhance care before, during, and after hospitalization.
In this episode, we speak with Rebecca Miller, an associate professor at the Yale School of Medicine in the Department of Psychiatry, and a person living with young-onset Parkinson's. She is joined by Leslie Pelton, a senior program officer with the John A. Hartford Foundation. Together, they do a deep dive into why hospital safety is especially critical for people with Parkinson's and highlight ongoing efforts to advance safer care, including initiatives such as the Age-Friendly Health Systems and the 4Ms framework.
During the episode, Leslie mentions the 4Ms Worksheet and My Health Checklist as useful tools for preparing for a hospital visit.
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Cuando los síntomas del Parkinson están bajo control durante el día, esto se conoce como estar en "on". Cuando los efectos del(los) medicamento(s) empiezan a desaparecer y los síntomas reaparecen o empeoran, se consideran periodos en "off". Estas fluctuaciones de los síntomas pueden variar de una persona a otra; algunas personas pueden notar más síntomas motores durante los períodos en "off", mientras que otras pueden verse más afectadas por síntomas no motores.
Los periodos en "off" pueden complicar las tareas diarias, sobre todo si suceden con mayor frecuencia a lo largo del día. En este episodio, hablamos con el Dr. Enrique Urrea Mendoza, neurólogo y especialista en trastornos del movimiento en Tallahassee Memorial Healthcare, para entender mejor por qué se producen los periodos en "off". Habla de los desencadenantes habituales que pueden contribuir a los periodos en "off" y comparte estrategias para manejar mejor estas fluctuaciones.
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There is still much to learn about Parkinson's disease (PD), and it remains an ongoing challenge for scientists and researchers. The Parkinson's Foundation recognizes the importance of supporting new and innovative ideas to advance research toward a cure.
Research takes time- from a conceptual idea to early laboratory work, with the hope of eventually progressing to clinical stages and, ultimately, a breakthrough. PD GENEration: Powered by the Parkinson's Foundation is a global research initiative that offers genetic testing and counseling to people with Parkinson's. The goal is to use the genetic data collected to accelerate current and future clinical trials aimed at developing better, more personalized treatments for Parkinson's.
In this episode, we speak with Connor Courtney, Associate Director of Research Programs at the Parkinson's Foundation. He takes a deep dive into how basic science lays the groundwork for future research and highlights the importance of supporting young scientists throughout their career in Parkinson's research. We later invite Maggie Caulfield, Director of Research Programs, who shares recent key insights from the PD GENEration study and discusses current challenges in Parkinson's research. Together, Maggie and Courtney emphasize the vital role individuals can play by learning more about and participating in research.
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One of the key missions of the Parkinson's Foundation is to increase access to high-quality care for everyone living with and affected by Parkinson's disease (PD). As more people are diagnosed with PD each year, the availability of PD specialists remains limited. During a recent visit to Washington, DC, the Foundation led a National Roundtable on Parkinson's Care and Innovation with the goal of convening a multidisciplinary group of experts to provide input and help shape the future of PD care. This multi-pronged approach recognizes the importance of having patient-centered care at the forefront of decision making, ensuring that people with Parkinson's and key community members are actively involved in the conversation.
While the Foundation continues to influence policy at the federal and state level, there are also meaningful steps individuals can take to improve their care. The Foundation encourages people with PD and members of their care team to take an active role in managing their care by being proactive before, during, and after a doctor's visit.
In this episode, we invite Dr. Kathy Blake, a retired cardiologist and person living with Parkinson's, and Dr. Sneha Mantri, a movement disorders neurologist and the Chief Medical Officer at the Foundation. Together, they highlight the resources available to help prepare for a doctor's visit and talk about the Foundation's ongoing efforts to influence PD care nationwide. They emphasize the importance of self-advocacy and raising awareness about Parkinson's.
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Caregiving takes many forms — from spouses, family members and friends providing daily, hands-on care, to those supporting from a distance to individuals managing care responsibilities on their own. No matter the circumstance, every caregiver plays an important role. This year, the Parkinson's Foundation is highlighting the diverse experiences of caregivers within the Parkinson's disease community and beyond with our theme: Real Care. Anywhere. In this episode, we speak with CJ Polkinghorne and Nikki Logan, care partners for their spouses living with young-onset Parkinson's disease. They share their stories of navigating the day-to-day challenges of caregiving, while remembering to celebrate the victories along the way. They emphasize the importance of communicating their needs and recognizing when it's time to take a step back and care for themselves. They also reflect on learning to adjust expectations -- not only for their loved ones, but for themselves as well.
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Noviembre es el Mes Nacional de Cuidadores Familiares, una época para honrar a quienes cuidan desinteresadamente de sus seres queridos. Este año, la Parkinson's Foundation destaca las diversas experiencias de los cuidadores dentro de la comunidad de la enfermedad de Parkinson y más allá con nuestro tema: Cuidado real. En cualquier lugar.
Cuidar de una persona con Parkinson significa prestar mucha atención, no sólo a los síntomas y las necesidades de su ser querido, sino también a su propio bienestar. Formar un equipo de apoyo, ya sea apoyándose en la familia, los vecinos o los amigos, crea una base sólida para que tenga el mejor apoyo a lo largo de su recorrido como cuidador.
En este episodio, hablamos con Joanna Fitzgibbons, investigadora de Colorado University, dedicada a la comunidad de aliados en el cuidado. Nos cuenta cómo el valor cultural de "cuidar de los suyos" a veces puede hacer que sea difícil pedir ayuda. Ese orgullo, aunque profundamente arraigado en el cuidado y el propósito, puede llevar al cansancio y el agotamiento. Nos recuerda que nunca es demasiado pronto para hablar de recursos y crear un plan de cuidados antes de que se presente una crisis.
Durante el episodio, Joanna mencionó el Conversation Project, un recurso en línea que ofrece orientación acerca de cómo entablar conversaciones difíciles con la familia y abogar por uno mismo ante el equipo de atención médica. Incluiremos un enlace aquí.
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Many people with Parkinson's disease experience urinary or bladder issues at some point in their journey. These symptoms can take different forms and may affect people differently based on gender. Recognizing the signs is the first step toward understanding how to manage them and when to seek care.
In this episode, Dr. Ankita Gupta, MD, MPH, FACOG, a urogynecologist at University of Louisville Hospital, talks about common bladder issues in Parkinson's, such as urinary frequency, urgency, and nocturia. She explains how these symptoms can affect quality of life and even contribute to social isolation, and she highlights treatment options that can help manage them.
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Our Parkinson’s Foundation Ambassadors are the backbone of our outreach, bringing awareness about Parkinson’s disease (PD) directly into local communities. From leading community walks, to staffing tables at resource fairs, to starting meaningful conversations about the urgency of PD -- there are many ways to get involved with the Foundation.
Each of our ambassadors has their own story and special reason for choosing to volunteer with us. In this special episode, we speak with Holly Bloom, who was recently recognized as a Rising Star in the South Central Chapter. She shares her volunteer experience with the Foundation and her personal journey as a care partner.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
Caregiving can be an intensive endeavor, not to mention the physical, mental, emotional, and even financial aspects of it. Just as people with Parkinson’s disease need support services, so, too, do their care partners. In this episode, Social Worker Cara Iyengar, MSW, LISW, the coordinator of the Parkinson’s Foundation Center of Excellence at the University of Iowa in Iowa City, discusses some of the Foundation’s resources that she shares with care partners, her three-pronged approach to supporting them, some of the challenges she faces in bringing support services to people in a rural state like Iowa, and the kind of feedback that she has received from care partners.
Join community members from across the country for this virtual experience that allows you to move for Parkinson’s from wherever you are! This program will help you get motivated and kick off your 60 minute walk. Remember, you can walk, run, hike your favorite route, or simply just listen to the Moving Day at Home program! We encourage everyone to share photos of their experience by posting to your social media page with the hashtag #MovingDayatHome.
Join us for the entire program by accessing our Spotify playlist: https://open.spotify.com/playlist/0n6HRIvfZgoPjJfSoc57aW?si=d49f0a3fd6b54dbe\
Cuando uno piensa en la enfermedad de Parkinson (EP), es fácil asociarla más con los síntomas motores, como la rigidez o el temblor; pero también existen síntomas no motores, como los cambios de estado de ánimo, la ansiedad o la depresión.
En este episodio, hablamos con la doctora Elsa Baena, neuropsicóloga clínica en el Barrow Neurological Institute, Centro de Excelencia de la Parkinson’s Foundation, acerca de estos cambios cognitivos asociados con el Parkinson.
La doctora Baena explica la conexión entre el Parkinson y la cognición y cómo pueden prepararse las personas con Parkinson para estos cambios (no sólo las maneras farmacológicas, sino también las terapéuticas).
Asimismo aprenderemos acerca de los miembros del equipo de atención médica que pueden apoyar a una persona con Parkinson y a sus familiares con estos cambios cognitivos.
This episode explores parkinsonism, a group of conditions with symptoms similar to those of Parkinson’s disease, itself a neurological degenerative brain disorder resulting from neurons in the brain failing to make enough dopamine. It is characterized by a loss of motor control, including stiffness, slow movements, resting tremors, and postural instability. Plus, non-motor symptoms of depression, loss of the sense of smell, gastric problems, mood and cognitive changes are common.
Parkinsonism is a general term for a group of neurological conditions involving movement problems similar to those seen in Parkinson’s disease. A variety of underlying causes may lead to parkinsonism, including medications that affect dopamine levels in the brain or the action of dopamine in the brain. Examples are antipsychotic medications used in psychiatry, calcium channel blockers for blood pressure control, and stimulants like amphetamines and cocaine. Even though stopping the medications may result in them being cleared from the body in the near term, symptoms may persist for several months.
In this episode, Cheryl Waters, MD, Professor of Neurology at Columbia University in New York City, discusses medication-induced parkinsonism and what people with Parkinson’s and doctors need to be aware of.
Past podcasts have given glimpses into the broad range of programs and initiatives that the Parkinson’s Foundation has developed and supports. But to give a better understanding of the Foundation’s mission, its operation, reach, and funding, we spoke with John Lehr, its president and CEO. He discussed the reasons for the merger of the National Parkinson Foundation and the Parkinson’s Disease Foundation to form today’s Parkinson’s Foundation, what the new organization has accomplished, and its plans for the future.
Parkinson’s disease (PD) can be an impediment to certain activities, but with proper planning, people can still pursue many of the things they have always enjoyed. One of those things is travel – to see family, visit friends, or explore new sights and cultures. One key to enjoying travel is planning. Pay special attention to issues that are known to affect how you feel and function.
Packing extra medications when traveling has always been a good idea, but with today’s unpredictability of flight schedule changes and cancellations, as well as the possibility of contracting COVID, it makes sense to carry even more than a few days’ supply of extra medication. Anticipate managing any shifts in medication timing if you are visiting a different time zone, interruptions to your exercise and sleep routines, in addition to unforeseeable events and changes.
In this episode, we hear from two people with valuable advice and tips for traveling with PD. Rebecca Miller, PhD is a clinical psychologist and Associate Professor of Psychiatry at Yale University School of Medicine and is a person living with PD. Occupational Therapist Julia Wood, MOT, OTR/L is Director of Professional and Community Education at the Lewy Body Dementia Association. An overriding message from both of them is “planning for the unpredictability of today's world.”
People often view Parkinson’s disease (PD) in terms of its motor symptoms, including slow movements, tremors, and stiffness. Often, these symptoms can be controlled with levodopa or other dopaminergic drugs. But just as troubling or more so to the person with PD are the non-motor symptoms of nausea, constipation, low blood pressure, mood disturbances, sleep problems, and more. In this episode, we focus on feeling nausea with Parkinson’s disease in an interview with Andrew Feigin, MD, Professor of Neurology at New York University Langone Health and director of the Fresco Institute for Parkinson’s and Movement Disorders in New York City, a Parkinson’s Foundation Center of Excellence. He discusses the causes of nausea, both from PD itself and from medication, and what people can do to help lessen or prevent it.
As with many medical conditions, people with Parkinson’s disease (PD) may experience disparities in access to care, in diagnosis, treatments, and ancillary care. These disparities may be based on age, gender, race, financial situation, language barriers, and geographic location, among other factors. Dr. Lynda Nwabuobi, now a movement disorders specialist at New York-Presbyterian/Weill Cornell Parkinson’s Disease and Movement Disorders Institute in New York City, received her specialized training at Columbia University, supported by a Parkinson’s Foundation Movement Disorders Fellowship.
During her training, she noticed that women with PD who were home-bound were more likely than men to be alone and to have less access to a neurologist. She also recognized disparities in the care between the majority white population of people with PD seen at the main hospital clinic of New York University (NYU) compared to the more racially diverse, multicultural community of people seen at NYU’s public Bellevue Hospital nearby – even though they were being treated by the same doctor. In this episode, she describes how she acted on her passion of “creating access to better care to marginalized communities and bring more diversity to the clinic.” Rather than waiting for the community to come to the health care setting, she reached out to them on their turf -- at a farmers’ market.
Many people with Parkinson’s disease (PD) continue to work, socialize, and enjoy life, making accommodations as necessary to fit the disease into their lifestyles. And while no one would choose to have PD, some people have even found or created benefits of having it. One of them is Barry Blaustein, an award-winning Hollywood writer, director, and producer, who wrote several of Eddie Murphy’s movies and developed several of his Saturday Night Live characters, writing many of Murphy’s skits with his writing partner. When we spoke, he had been living with PD for five years, working during that time in Hollywood and teaching screen writing at the university level. In this episode, he describes how he has dealt with his disease, continued to work, and maintained an upbeat attitude.
Just as people in the general population have to contend with various unrelated medical conditions, so may people with Parkinson’s disease (PD). Such conditions are termed “comorbidities,” that is, diseases or conditions occurring along with, in this case, PD. Examples are cardiovascular disease, strokes, arthritis, diabetes, asthma, cancer, cataracts, other diseases of aging, as well as those that can occur at any stage of life. An important consideration is to determine which health professional would be best at addressing them and who coordinates the care. A movement disorders specialist may feel comfortable treating a general neurological condition in addition to PD, but in this podcast episode, movement disorders neurologist Ashley Rawls, MD, MS of the University of Florida College of Medicine in Gainesville, a Parkinson’s Foundation Center of Excellence, emphasizes that one’s time with her is best used addressing the person’s PD, while comorbidities are most appropriately managed by specialists in those particular areas. For best patient outcomes, proper coordination of care and sharing of information will give each health professional a total picture of the person’s medical management, including prescribed drugs and possible drug interactions.
La distonía es un trastorno del movimiento que causa contracciones involuntarias de los músculos. Estas contracciones llevan a posturas anormales de partes del cuerpo y a veces a movimientos repetitivos.
En este episodio, hablamos con la doctora Marta San Luciano, Profesora Asociada de Neurología en la University of California San Francisco, acerca de la definición y el manejo de la distonía. La doctora San Luciano nos explica que la distonía es un síntoma común de la enfermedad de Parkinson que puede aparecer al principio o a lo largo de la enfermedad.
Aprendemos que la distonía generalmente ocurre en los periodos “off”, cuando el cuerpo tiene poco medicamento para el Parkinson, pero también puede aparecer en el medio de una dosis, en un periodo “on”.
Además de las terapias que existen para controlar la distonía, como los medicamentos y la fisioterapia, la doctora San Luciano comparte ejemplos de actividades diarias que pueden ayudar a manejar la distonía.
Forty percent of people living with Parkinson’s disease (PD) are women, but compared to men, they have a longer time to diagnosis, less access to neurologist care, and are underrepresented in research studies. Although PD presents special considerations for women, they are, overall, treated the same as men. Some of the differences are body weight, drug metabolism, symptoms, monthly hormone cycles, hormonal changes across different stages of life, pregnancy, and family and other care giving responsibilities and occupational demands, all of which can affect their disease and its treatment. However, these special needs have largely been underrecognized and under-addressed by the medical profession.
Six women health care professionals, three of whom have PD, authored a paper titled “Unmet Needs of Women Living with Parkinson's Disease: Gaps and Controversies” to bring these issues to the fore, identify current knowledge, gaps, and possible strategies to meet the neglected needs of women with PD.
Some of these areas of need are management of the disease, psychosocial issues, advocacy, research on sex and gender issues, and participation of women in research studies. One of the authors is Annalien Oosterbaan, MD, PhD, who has Young-Onset Parkinson's disease and is an obstetrician/gynecologist, researcher at the Radboud University Medical Center in Nijmegen, The Netherlands, and a mother, and whom we spoke with for this podcast. She said the paper lays out a path forward for medical professionals to recognize the unique needs of women with PD and for women to become educated and empowered to communicate their symptoms and needs, participate in research, and to organize as a community.
Dyskinesia is a condition involving erratic, uncontrollable muscle movements such as twitches, jerks, twisting, or writhing of the face, arms, legs, or trunk. It can be a complication after long-term use of levodopa to treat Parkinson’s disease. Dyskinesias can be mild, or they may be severe enough to interfere with normal functioning.
Basic laboratory research has revealed some of the changes in the brain after long-term exposure to levodopa. In this episode, Kathy Steece-Collier, PhD, a professor in the Department of Translational Neuroscience in the Michigan State University College of Human Medicine in Grand Rapids, discusses her research into the biologic mechanisms of levodopa-induced dyskinesias and a possible future prevention and treatment for them.
Funded by an International Research Grant from the Parkinson’s Foundation, she delineated the role of calcium channels, which allow calcium to enter nerve cells in the brain, in the development of levodopa-induced dyskinesias. Based on those findings, she is now working on an approach that uses a single injection into a part of the brain that is affected in Parkinson’s disease (the striatum) that may have the potential for long-term prevention or relief of dyskinesias. The idea is to introduce a short piece of RNA with a tight hairpin turn in it, called a short hairpin RNA (shRNA), to silence the gene that leads to abnormal calcium channel signaling in the striatum that causes dyskinesia. Dr. Steece-Collier also explains how this technique may have advantages over drug therapy to control dyskinesia.
En los últimos años, se han publicado varios estudios que sugieren que empezar la fisioterapia en las etapas tempranas de la enfermedad de Parkinson puede tener beneficios neuro-protectores, lo que significa que ayuda a mantener el cerebro más saludable. En el caso de las personas con Parkinson, la fisioterapia puede ayudar con el equilibrio, con la marcha y para mantener buena fuerza.
En este episodio, hablamos con Ana Sanchez Junkin, doctora en fisioterapia con especialidad clínica en neurología. Ana trabaja clínicamente en el hospital Beth Israel Deaconess Medical Center en Massachusetts, Centro de Excelencia de la Parkinson’s Foundation. Además, trabaja con estudiantes como instructora clínica en el MGH Institute of Health Professions.
Ana comenta que es recomendable que las personas con Parkinson vayan a su primera evaluación con un fisioterapeuta tan pronto como sean diagnosticados. Esto ayuda al fisioterapeuta a identificar problemas antes de que empiecen a impactar funcionalmente a la persona.
Además, el entendimiento a fondo que un fisioterapeuta tiene del Parkinson le permite personalizar los ejercicios de sus pacientes para las cosas con las que están teniendo dificultades. Además de la fisioterapia, Ana opina que lo más importante es encontrar una forma de ejercicio que disfrute, para que sea más fácil crear un hábito de ejercitarse con frecuencia.
Regular exercise in its various forms is one of the most important things that people with Parkinson’s disease (PD) can do for themselves. It can promote aerobic conditioning, strength, balance, and flexibility and help slow the decline in mobility while improving quality of life.
Findings from the Parkinson’s Foundation Parkinson’s Outcome Project, the largest ever clinical study of PD, suggest that people with PD engage in at least two and a half hours of exercise each week to improve quality of life. Thus, recognizing the importance of exercise, the Parkinson's Foundation, in collaboration with the American College of Sports Medicine, has created new Parkinson's Exercise Recommendations to ensure that people with PD receive safe and effective exercise programs and instruction.
These guidelines were developed and reviewed by a panel of exercise and Parkinson’s experts who recommended the frequency, intensity, time, type, volume, and progression of exercises that are safe and effective for people with PD. They include four domains important for people with PD: aerobic activity; strength training; balance, agility and multitasking; and stretching. Each recommendation is paired with specific types of activity and special safety considerations for people with PD. Besides addressing people with PD, the guidelines also are a framework for exercise professionals to help develop safe and effective programs to improve quality of life for the PD community.
In this episode, we have two exercise professionals specializing in Parkinson’s disease. Daniel Corcos, PhD, a professor in the Feinberg School of Medicine at Northwestern University in Chicago, was an outside reviewer of the Parkinson’s Foundation’s Exercise Competencies and Criteria Initiative, which spells out general principles for people with PD to engage in endurance exercise. He explains endurance (cardiovascular) exercise, in which one aims to raise the heart rate to specific levels. Lee Dibble, PhD, PT, ATC, professor and chair of the Department of Physical Therapy and Athletic Training at the University of Utah in Salt Lake City, discusses resistance training, also called strength training.
Medicare, the U.S. government health insurance program, covers more than 63 million people, with more than 49 million people also receiving prescription drug coverage. It provides health insurance for adults over 65 as well as people with some medical conditions or disabilities. The system has many moving parts, and beneficiaries need to understand it to derive the most benefit, know what it covers and does not cover, and what costs they will be responsible for. An important time is the initial enrollment period, when people need to decide what kind of plan they want to select, either “original” Medicare through the government or a Medicare Advantage plan with a private insurer. Receiving prescription drug coverage is another decision, one that is particularly important to someone with Parkinson’s disease. Fortunately, there are several resources to help people sort out all the options, and once enrolled, the year-to-year coverage decisions are much less burdensome. In this episode, Jane Sung, JD, a senior strategic policy advisor at the AARP Public Policy Institute, explains some of the intricacies of the Medicare system and helps to sort out the kinds of decisions people need to make about Medicare coverage.
Sabemos que existen otras cosas aparte de la medicina como parte del tratamiento para una persona con la enfermedad de Parkinson; por ejemplo, la actividad física, que sabemos que puede ayudar a la salud del cerebro.
En este episodio, hablamos con la doctora Giselle Petzinger, Profesora Adjunta de Neurología en la Keck School of Medicine de la University of Southern California, acerca de un estudio que llevó a cabo para comprender mejor si usar un fitbit con entrenamiento puede promover la actividad física en las mujeres hispanas con enfermedades neurológicas crónicas como el Parkinson.
Aunque muchas participantes sabían que la actividad física es importante para la salud, no sabían que también puede ayudar a la salud del cerebro. La meta del estudio fue promover la actividad física utilizando la tecnología del fitbit, entrenamiento y educación llevado a cabo en un centro comunitario.
As many people get older, they start to think about where they want to reside for the rest of their years. For many of them, that place is the home they are already in. But it is not as simple as just staying put. One must consider mobility issues, staying safe physically, nearby services, social support, transportation issues, along with present and future medical needs.
These are issues common to most people as they age, and Parkinson’s disease adds another level of considerations. Fortunately, many resources are available to help in planning for the future. In general, the topic goes under the term “Aging in Place,” which the U.S. Centers for Disease Control and Prevention defines as “the ability to live in one's own home and community safely, independently, and comfortably, regardless of age, income, or ability level.
In this episode, Rodney Harrell, Vice President for Family, Home, and Community at the AARP Public Policy Institute describes what Aging in Place should mean, misconceptions about it, barriers to it, what to consider, and how best to prepare for Aging in Place. Then Scott Rider, a Parkinson’s Foundation Aware in Care Ambassador, National Development Committee Member and Carolinas Chapter Advisory Board Member, discusses how he has put an Aging in Place plan into practice by adapting his home for his current needs and anticipated future needs considering, specifically, his Parkinson’s disease.
Among the many kinds of outreach and activities that help people with Parkinson’s disease (PD), art programs are popular and beneficial. They can provide social interaction, creativity, and movement, with the potential to enhance emotional and physical wellbeing. One program, Smile Through Art, benefited from a Community Grant from the Parkinson’s Foundation, allowing it to continue to reach people with PD and their care partners throughout the pandemic. Smile Through Art Workshops encourage creativity and movement, using art to address problems of fine motor control, rigidity, and tremors while providing cognitive stimulation. The goals are to foster confidence, mood, and optimism.
In this episode, Saba Shahid, the Chief Smile Officer and President of Creative Neurology, the company that developed the Smile Through Art program, discusses what the workshops entail, the success that they have had, and how a Community Grant from the Parkinson’s Foundation allowed the program to continue to reach people with PD during the pandemic.
Parkinson’s disease (PD) does not exclusively affect the older population. In fact, about four percent of people with PD in the United States developed the disease before age 50. This is called Young-Onset Parkinson’s disease (YOPD). While the disease in younger people resembles in many ways PD in the older age group, it presents some unique challenges, including issues with employment, sexuality, pregnancy, family life, financial planning and parenting. In this episode, the second of two on YOPD, Dr. Bart Post of Radboud University in Nijmegen, the Netherlands, a Parkinson’s Foundation Center of Excellence, focuses on some of the social and interpersonal issues, including work, family, and women’s issues. He also describes the Phase of Life Dependent Support Program that he has developed at his university to meet the special needs of people with YOPD.
En este episodio, hablamos con Sebastián Krys, productor e ingeniero argentino y ganador de 19 Latin GRAMMYs y GRAMMYs, sobre su experiencia navegando las emociones que acompañan su recorrido por el Parkinson. Desde el diagnóstico inicial hasta la etapa de aceptación, Sebastián comparte cómo navega los obstáculos diarios que acompañan al Parkinson y dónde encuentra el mayor apoyo.
Entre la creatividad de su carrera, el ejercicio diario y el apoyo de sus amigos y familia, Sebastián concluye que lo más importante es levantarse cada día y vivir el mejor día posible, normalizando los cambios que resultan de la enfermedad al educarse e integrarse a la gran comunidad de apoyo del Parkinson.
Although people often think of Parkinson’s disease (PD) as one affecting the elderly, approximately one in 25 people living with PD in the United States received their diagnosis before age 50. This is known as Young-Onset Parkinson’s disease (YOPD). While it shares many motor and non-motor symptoms with typically older onset disease, it does differ in some ways, particularly in terms of speed of progression, reaction to medications, life circumstances and underlying genetic risk factors.
In this episode, the first of two on YOPD, Dr. Bart Post of Radboud University in Nijmegen, the Netherlands, a Parkinson’s Foundation Center of Excellence, describes some of the physical characteristics of YOPD. In the second episode, he will focus on some of the social and interpersonal issues, including work, family, and specifically women’s issues. He will also describe a program that his university has developed for people with YOPD.
Comprender todos los aspectos de una prueba genética – desde los positivos hasta los negativos – es un factor importante del trabajo de la consejería genética para que uno entienda y tenga una idea más clara de por qué se presentó/apareció o se manifestó una enfermedad en la familia.
En este episodio, hablamos con Priscila Delgado Hodges, asesora genética certificada y licenciada en el Departamento de Genética Médica y Molecular (MMGE) de la Facultad de Medicina de la Indiana University, acerca de la consejería genética.
Priscila explica qué es la consejería genética, qué puede esperar un paciente durante una visita y ofrece recomendaciones para personas interesadas en participar en estudios de investigación.
Stress is almost a constant in our lives and especially when coping with changing symptoms of Parkinson’s disease. Adding to the usual stresses are the pandemic with its social isolation and uncertainty of when it will be over, as well as the flood of local and international news. So we all deserve some time to focus on ourselves, and one useful technique is mindfulness meditation, in which a person focuses on being intensely aware of what they are sensing and feeling in that moment. This focus helps give insight into those senses and feelings without interpreting them or judging them. Various techniques can facilitate this practice to reduce stress, including breathing methods and guided imagery. In this episode, Crista Ellis, Community Program Manager with the Parkinson’s Foundation and a certified yoga and meditation educator, describes what mindfulness meditation is, how people can begin the practice, including the Foundation’s Mindfulness Mondays sessions, and what it can do for them.
The cause of most cases of Parkinson’s disease (PD) is unknown. Researchers have found genes or genetic variants that are associated with risk for the development of PD, but genetic causes are thought to play a role in only a minority of cases. However, accumulating evidence from epidemiologic studies, laboratory basic research, and animal models indicates that exposure to environmental toxins can increase risk of the disease. These substances include pesticides, solvents, metals, and other environmental pollutants. In this episode, Samuel Goldman, MD, MPH, Professor of Occupational and Environmental Medicine and Neurology at the University of California, San Francisco, a Parkinson’s Foundation Center of Excellence, reviews what has been learned so far and explains some of the complexities of doing research on environmental causes of PD.
Entender si existe una correlación entre cultura, idioma y opciones de tratamiento en el Parkinson nos ayuda a saber cómo se comunica la información de la enfermedad entre los hispanohablantes (desde las opciones quirúrgicas hasta la información general de la enfermedad).
En este episodio, hablamos acerca de la neuropsicología, la familia y la cultura en la medicina con el doctor Xavier E. Cagigas, director asociado del Centro de Excelencia Neuropsiquiátrico para Hispanos de UCLA y profesor clínico asistente de ciencias de la salud en el departamento de Psiquiatría y Ciencias Bioconductuales en la University of California, Los Ángeles, UCLA.
El doctor Cagigas comparte su experiencia con los programas culturales de neuropsicología y la correlación entre cultura, idioma y opciones de tratamiento en el Parkinson.
Restorative sleep is vital for optimal physical, mental, and emotional health. Sleep problems affect a large proportion of the general population and take many forms, so the consequences of poor sleep are widespread. In particular, sleep disturbances affect more than 75 percent of people with Parkinson’s disease (PD). And according to our expert guest, Dr. Aleksandr Videnovic of Harvard Medical School and Director of the Division of Sleep Medicine at Massachusetts General Hospital, a Parkinson’s Foundation Center of Excellence, these problems are under reported by patients and under diagnosed by health professionals. The causes of sleep problems include recurrent symptoms of PD, disordered breathing, REM sleep behavior disorder, restless leg syndrome, and periodic limb movement disorder, among other factors and may be multifactorial. In this episode, Dr. Videnovic addresses some of the most frequent sleep problems – insomnia, REM sleep behavior disorder, and daytime sleepiness.
It is a long road to become an anesthesiologist – four years of medical school and another four years of postgraduate training and residency. To subspecialize in cardiac anesthesiology requires at least one more year. And Dr. Jonathan Lessin, our guest today, did all of that before he was diagnosed with Parkinson’s disease in his late 30’s, forcing him to adjust his career path.
Anesthesiology is a very “hands on” practice, requiring dexterity to insert and manipulate breathing tubes, intravascular catheters, and imaging, ventilatory, and other mechanical devices. It also requires stamina for long operations. Jonathan was able to continue working for some time after implantation of a deep brain stimulator (DBS). But, taking into account the safety of his patients, he eventually knew it was time to give up the profession he loved. In this episode, he relates his history, how he came to receive a Parkinson’s diagnosis from a friend, how he persevered as long as was practical, and what his DBS allows him to do now.
In this podcast episode, we ‘Meet the Researcher’, featuring a prominent investigator who has received support from the Parkinson's Foundation. We illustrate how a research career develops, what motivates people to study what they do, and to give some insight into what support from the Parkinson’s Foundation can accomplish in understanding the disease better and finding solutions.
In this episode, Dr. William Dauer, Director of the Brain Institute at the University of Texas Southwestern Medical Center in Dallas, describes his career path and how he came to be interested in movement disorders and in dystonia in particular, a condition in which muscles contract involuntarily, causing repetitive or twisting movements. He has long been involved in basic science research as well as in clinical practice, and what he has found in each area he has been able to apply to the other.
People with Parkinson’s disease (PD) may experience mental health problems, such as depression, apathy, and anxiety more frequently than the general population. Psychosis, such as delusions or hallucinations, may occur as part of the disease or from medications used to treat it. Fortunately, these conditions are treatable if recognized. Unfortunately, clinicians may not screen for them, and therefore, the problems may be missed. In addition, people with PD may come to their clinic visits with a list of physical problems, so they may not make mental health a priority.
In this episode, geriatric psychiatrist Dr. Mary Hart Bryan of the Medical University of South Carolina in Charleston, a Parkinson’s Foundation Center of Excellence, explains some of the mental health conditions that people with PD may experience, and she emphasizes the importance of recognizing these conditions and seeing the proper health care professional for treating them, using psychotherapy, cognitive behavioral therapy, medication, or combinations of these approaches. She shares how care partners, too, often have mental health needs that should be recognized and addressed.
Neuropathy is a broad category of non-motor symptoms of Parkinson’s disease (PD), basically resulting from damage or dysfunction of one or more nerves. It typically may result in numbness, tingling (“pins and needles”), pain, or weakness in the area served by the specific nerve or nerves. Some pain sensations may be sharp, burning, or throbbing. According to the Cleveland Clinic, about 25% to 30% of Americans will be affected by some degree of neuropathy over their lives, especially as they age. Common risk factors are diabetes, metabolic syndrome, heavy alcohol use, as well as tasks requiring repetitive motions. Neuropathies frequently start in the hands or feet but may occur in other body sites as well.
Neuropathy occurs more frequently among people with PD compared to those without PD, and the reasons are not entirely clear. PD itself may be a factor in neuropathy, and levodopa may contribute to lower vitamin B12 levels, leading to neuropathy. However, not all neuropathies experienced by people with PD are necessarily part of the disease or its treatment, so it is important to have a good medical work-up to determine the cause of the symptoms, some of which may be treatable.
Nurse Practitioner Ellen Walter, MSN, CNP works in the Movement Disorders Section of the Center for Neurological Restoration at the Cleveland Clinic in Ohio, a Parkinson’s Foundation Center of Excellence. In this episode, she identifies the general kinds of neuropathies and then focuses on peripheral neuropathies and why it is important to try to identify their causes as a possible path to treatments.
En honor al Mes Nacional de los Cuidadores Familiares, en este episodio, hablamos con Ruby Rendon, Coordinadora de Alcance Hispano en el Muhammad Ali Parkinson Center y cuidadora principal de su mamá, Corina Villalobos, que hace ya 15 años fue diagnosticada con la enfermedad de Parkinson.
Poco después del diagnóstico de su mamá, se interesó en aprender más sobre la enfermedad y fue así como encontró el programa para hispanos del Muhammad Ali Parkinson Center.
Ruby comparte su experiencia como cuidadora de su madre, los recursos que le han ayudado a navegar su recorrido emocional como cuidadora, donde encuentra el apoyo emocional en su vida y lo que le ha ayudado a superar los desafíos que ha enfrentado.
For many years, Western medicine focused on disease and on keeping people healthy. Then it evolved to view the “whole person,” including the physical, mental, emotional, social, and environmental aspects of one’s functioning. Today’s medicine goes even beyond that model and encompasses the family, especially care partners, who take on so much when caring for a loved one with a chronic disease.
A leading voice in this area is Jori Fleisher, MD, MSCE of Rush University Medical Center in Chicago, who has been developing a peer mentoring program in Parkinson’s and related diseases. In a study she conducted using regularly scheduled home visits for people with advanced neurodegenerative diseases, the researchers found that caregivers’ strain increased from mild to moderate or even to severe over the course of one year. So now she is addressing caregiver needs through a peer mentoring program built into a home visit program, with a research component to it. After a period of training, peer mentors were matched with a mentee and eventually a second mentee over the course of a year. In this episode, Jori reviews what she and her colleagues have learned so far, how they are refining the program, and where they will go from here, including a large, national, randomized trial of the program.
Until the ultimate goal of finding a cure for Parkinson’s disease (PD) is achieved, researchers are taking various approaches to developing a treatment that significantly slows its progression. Here, clinical science and basic science come together to understand the underlying biological mechanisms of PD and then using that knowledge to test medications that target those mechanisms. Having discovered such molecular and cellular malfunctions, scientists may tailor the development of medications to target the underlying causes of the disease.
Another approach has also relied on knowing the mechanisms of the disease but then searching through the vast array of current drugs to treat all sorts of conditions and rationally choosing ones that may work to slow progression of PD – so-called drug repurposing. Dr. Patrik Brundin, Director of the Parkinson’s Disease Center at Van Andel Institute in Grand Rapids, Michigan, explains that this is the approach that the International Linked Clinical Trials (iLCT) program for Parkinson’s has taken. Since its inception in 2010, the iLCT has become one of the most comprehensive drug repurposing programs focused on a single disease. Under this program, seven clinical trials have been completed, and 15 are ongoing, testing 16 potential candidate drugs to slow the progression of PD. The advantage is that the drugs under consideration have already been tested for safety and how they act in the body, speeding up the process of applying them to Parkinson’s.
Gene-based therapies for Parkinson’s disease, while still in the developmental stage, are under active investigation. For this potential therapy, genes are engineered in a laboratory and then injected into specific parts of the brain. The genes may function either to induce cells in the brain to produce dopamine, or to code for the production of enzymes that then lead to the production of dopamine.
This episode is the second part of our conversation with Dr. Roger Barker, Professor of Clinical Neuroscience at the University of Cambridge in the United Kingdom. In our previous podcast with him, he discussed cell therapy for Parkinson’s. Here, he explains what gene-based therapy is, plans for the execution of the treatments, what symptoms they are aimed at, where the field currently stands, and how it compares to developments in cell-based therapies. As the field is still in the experimental stages, he again offers advice to people with Parkinson’s who are considering entering a clinical trial of gene-based or cell-based therapy and what they may expect in terms of symptom management and disease progression.
Researchers have been investigating cell-based therapies for treating Parkinson’s disease (PD) for some time now, using a variety of materials and methods. Two approaches have been to implant dopamine-producing cells or to induce cells already in the brain to become dopamine-producers. We asked Dr. Roger Barker, Professor of Clinical Neuroscience at the University of Cambridge in the United Kingdom, to summarize what has been learned so far and based on that, to give his perspective on where the field may be headed. The field is still in the experimental stages, and he cautions about what people with PD should ask when considering entering a clinical trial of cell-based therapy and what they may expect in terms of symptom management and disease progression.
Not all medical interventions for Parkinson’s disease (PD) involve drugs. Two other main treatments are deep brain stimulation (DBS) and focused ultrasound (FUS). DBS uses a surgically implanted electrical pulse generator connected to electrodes placed in the brain to stimulate areas involved in PD. FUS does not require surgery but aims ultrasound – high frequency sound waves – at a specific area of the brain to relieve Parkinson’s symptoms.
Each technology has its uses, advantages, and disadvantages. In this podcast episode, Kyle Mitchell, MD of Duke University in North Carolina discusses the two treatments, how each works, which patients may do best with either of them, and some caveats. He also looks ahead at what is in development.
Social isolation may affect many people as they age, and COVID has exacerbated the problem for everyone. Isolation can have negative effects on physical as well as mental health. People with Parkinson’s disease (PD) are especially at risk for social isolation because of progressive physical changes, mood disturbances, a shrinking social circle, and secluding oneself due to fear of how people may perceive them. Apathy is also a common non-motor symptom, affecting people with Parkinson’s and making it difficult for them to get involved in activities. Other non-motor symptoms such as anxiety and depression can further limit social engagement.
In this podcast episode, Aaron Daley, Coordinator for the Parkinson’s Disease Clinic and Research Center at the University of California, San Francisco, discusses social isolation and ways to overcome it, whether you live in an urban or rural area. He recommends seeking out support at the first sign of the problem, exercising regularly, or just establishing a routine of activity with a companion.
Social isolation can have harmful effects on health and often increases with age because of loss of friends, acquaintances, or a spouse, hearing or vision deficits, or loss of mobility. In addition to being a risk factor for poor health, social isolation has been associated with an increased risk of death. Loneliness may lead to poor sleep and depression, two problems that already affect a proportion of people with Parkinson’s disease (PD). On top of all this, for more than a year social distancing to limit the spread of COVID-19 has added to problems of mental and physical health for many people.
In the face of a lack of research on social isolation in PD, Dr. Indu Subramanian, Director of the Parkinson’s Disease Research, Education and Clinical Center at the West Los Angeles Veterans Affairs Medical Center, conducted a survey of people with Parkinson’s to see if social isolation is associated with the severity of their symptoms and with their quality of life.
The survey was done before the pandemic. It showed that people reporting loneliness had 55% higher symptom severity, but individuals with a lot of friends had 21% fewer symptoms as compared with people reporting having few or no friends. (These are associations, and one should not assume a cause-and-effect relationship.) These results support the need for people with Parkinson’s to be socially engaged to prevent loneliness. In this podcast, Dr. Subramanian discusses loneliness and social isolation and offers suggestions for keeping them at bay.
Two important issues regarding Parkinson’s medications are when to initiate them in the early phases of the disease and how to ensure that people use their medications on time, every time. Myths and misconceptions have surrounded the controversial question of when to start taking medication. Fortunately, research has provided some answers, indicating that early initiation of levodopa or other medications does not diminish their usefulness later on. In this episode, Dr. Indu Subramanian, Director of the Parkinson’s Disease Research, Education and Clinical Center at the West Los Angeles Veterans Affairs Medical Center, discusses what has been learned about the timing of the initiation of therapy.
She also provides strategies for getting the most benefit from medications, from taking them at the right time every time, to establishing other regular schedules, to working with your doctor at every visit to optimize benefits and minimize side effects. And as a neurologist who is also board certified in integrative medicine, Dr. Subramanian advocates for incorporating mind-body, movement, and breathing techniques, as well as connecting with nature when using medication and other traditional Western medical practices.
Cuando existe una barrera del lenguaje entre una persona con Parkinson o, realmente, con cualquier tipo de enfermedad, y su equipo médico, la calidad de atención médica que recibe esa persona puede sufrir.
En este episodio, conversamos con la doctora María Luisa Moro, neuróloga del Centro de Trastornos del Movimiento Chase Family, Hartford Healthcare y directora de la Clínica Hispana del mismo Centro, localizada en Hartford, CT. Ella nos habla acerca de su trabajo para mejorar la atención de los pacientes hispanohablantes con Parkinson, con la creación de una clínica totalmente dirigida a esta comunidad; la primera de este tipo en Connecticut.
La doctora Moro comparte cómo identificó la necesidad de desarrollar un centro especializado para la comunidad hispanohablante con Parkinson, al notar que la falta de servicios para hispanos y la barrera cultural y del lenguaje puede prevenir que las personas con la enfermedad de Parkinson reciban un tratamiento integral, personalizado y multidisciplinario, con los últimos avances de la ciencia. También nos explica no solamente la importancia de la atención médica en un mismo idioma, sino de contar con un equipo de profesionales de la salud que entienden su cultura y necesidades.
Most people with Parkinson’s disease (PD) first seek medical care when they recognize or are troubled by symptoms – often stiffness, slowness of movement, or tremor. They may go on drug therapy at the time of diagnosis or, typically, within six to twelve months to relieve those symptoms.
In order for researchers and drug developers to test and ultimately find drugs that can slow the progression of the disease, they need to test those drugs in people who are not already on medications to alleviate symptoms and compare them to similar people taking a placebo. Currently there is no blood test or other biomarker to measure progression, so the most common and straightforward way for drug trials to judge progression is to observe signs and symptoms in people not receiving symptomatic medications such as levodopa, dopamine agonists, or other drugs that make symptoms less apparent.
Dr. Robert Hauser, Director of the Parkinson’s Disease and Movement Disorders Center at the University of South Florida in Tampa, urges people early in the course of their disease to enter a clinical trial as soon as they receive a PD diagnosis and before they go on medication. The longer that they can be observed before taking a potential disease-modifying medication, the greater the ability of researchers to detect changes, or in the case of a drug in development, if successful, not to see changes. However, patients who can go up to a year without medication are in short supply, in part because patients often wait to seek medical help until they want medication. As Dr. Hauser wrote in a medical publication a few years ago, “… why see a doctor when you don’t need treatment?”
But the answer is because people very early in the course of their disease are vital to finding drugs that can slow progression. Dr. Hauser terms the critical period of about one year between the time of first motor symptoms appearing to initiating symptomatic therapy the “Golden Year” for participation in disease modifying clinical trials. So, he wrote, “It is critical that care providers and patients don’t unknowingly waste this golden year.” In this episode he lays out the problem, has messages for patients and providers, and tells how such a system of referral to entry into clinical trials can work.
As most people with Parkinson’s disease (PD) and their care partners know, medication management is crucial to controlling motor symptoms. Given that many people need to take medication multiple times a day, “on time, every time” becomes a way of life, regardless of where one is – at home, at work, visiting with friends, shopping, or traveling. Ironically, one of the most difficult places to get medications on your individual schedule is in the hospital. Hospitals have set times to dispense medications, so a hospitalized person with Parkinson’s or their care partner needs to impress upon the staff that Parkinson’s medicines have to be given on the patient’s schedule, not on the hospital’s.
Rose Lang’s husband, John, fell and broke his hip, resulting in his transport to a local hospital and a several-hour period in the emergency department. Fortunately, he brought some of his pills with him and took them while waiting to be admitted to a room on a floor in the hospital. But even then, Rose, a retired pharmacist, had to educate the medical and nursing staff about the need for John’s “pills on time, every time.” She is also an Aware in Care Ambassador for the Parkinson’s Foundation, so John arrived at the hospital with his Aware in Care kit, and Rose made ample use of the resources within the kit to inform and educate the hospital staff caring for her husband.
When people think of Parkinson’s disease (PD), they often think of tremor, possibly because that is how the multi-talented English surgeon James Parkinson first described the disease in the early eighteenth century. In reality, tremor does not have to be present to receive a PD diagnosis. About 70% of people with PD experience this symptom sometime during the course of their disease, mainly affecting their hands and usually when the hands are at rest. Other sites of tremor are the lower lip, jaw, and leg. Obviously, tremors can interfere with daily activities, especially ones requiring fine motor control, such as shaving, dressing, writing, and various hobbies.
Several drugs can control tremor, with levodopa being one of the most effective. If levodopa alone is insufficient, it can be combined with other anti-Parkinson’s medications. Beyond drugs, various other treatments are available, including deep brain stimulation and focused ultrasound. But not to be forgotten, exercise is as important as medication, and stress management can be beneficial. In this podcast episode, movement disorders neurologist Dr. Muhammad Nashatizadeh of the University of Kansas Medical Center, a Parkinson’s Foundation Center of Excellence, discusses several ways to control tremor. Looking beyond today’s therapies, one of his research objectives is to identify new treatment options for debilitating movement disorders.
Palliative care is a specialized model of care incorporating medical, psychological, social, and spiritual aspects, all with a goal of relieving the burdens of a serious illness. The palliative care model can well be applied to most diseases to improve the quality of life for both patients and families. A “transdisciplinary” team of a doctor, nurse, social worker, and chaplain assess patients based on their needs, not on their prognosis. Although hospice incorporates this form of care near the end of life, palliative care is appropriate at any stage of a serious illness, including right from the point of diagnosis. While it addresses physical symptoms, it also aims to minimize emotional trauma and suffering from stress and to enhance spiritual wellness throughout the course of a disease, as an additional layer of support for the patient and family.
In this second podcast of our two-part series on palliative care and hospice, Adriana Gonzalez, LCSW of the University of California, San Diego, a Parkinson’s Foundation Center of Excellence, talks about the benefits of palliative care, the ongoing relationship of the care team with the patient and family, and how this form of care can specifically address the needs of people with Parkinson’s disease, including their non-motor symptoms.
Una gran parte de mejorar la vida de las personas con Parkinson es cuidar a las personas que los cuidan.
En este episodio, hablamos con Alma Aragon, cuidadora de su esposo Carlos Aragon, diagnosticado con la enfermedad de Parkinson hace cuatro años. Alma nos comparte su experiencia como cuidadora y cómo ha manejado los altibajos del viaje con su esposo, con quien lleva 25 años de casada. Si bien su viaje por el Parkinson ha tenido sus retos, Alma y Carlos han aprendido, creciendo juntos, que lo que mantiene su unión, por sobre todas las cosas, es el amor.
As Parkinson’s disease (PD) progresses into its advanced stages, symptoms can become increasingly difficult to manage. At some point, the person with PD and care partners may consider hospice services, which can optimize the quality of life for the person and the family. Whether the person resides at home, in an assisted living facility, or in a nursing home, hospice can come to them. Hospice is really part of palliative care, which aims to relieve the burden of a disease not only near the end of life but all along its course. Both the terms “palliative care” and “hospice” are often misunderstood, and certain myths surround them.
This podcast is the first of a two-part series on hospice and palliative care. In this first episode, Jessica Shurer, MSW, LCSW, Clinical Social Worker and Center Coordinator of the Movement Disorders Center at the University of North Carolina at Chapel Hill, a Parkinson’s Foundation Center of Excellence, helps to dispel some of the misunderstanding about hospice. She describes what hospice is, how it operates, and when and how to consider it. Moreover, she highlights the medical, psychological, and logistical benefits it can bring to the person with PD and to care partners.
When to consider an assisted living facility or a skilled nursing facility for someone with Parkinson’s disease (PD) is a monumental decision, raising a list of questions, including quality of the facility, location, physical layout, services, staff training and experience in caring for people with PD, financial aspects, and more. A care partner is integral in helping to research facilities and evaluate their appropriateness based on their partner’s needs and preferences. But the role of the care partner does not end there. Once a person is in such a facility, the partner can help implement best care practices, letting staff know about particular symptoms, needs, habits, and preferences of the resident, as well as advocate for them when necessary.
In this podcast episode, Joan Gardner, BSN, nurse clinician, and Rose Wichmann, PT, director of the Struthers Parkinson’s Center in the Minneapolis area, a Parkinson’s Foundation Center of Excellence, explore many of the issues that are central to choosing an assisted living or skilled nursing facility as well as ensuring the best experience once someone resides there.
Care partners have an essential role in helping to make life better for people with Parkinson’s disease (PD), and the Parkinson’s Foundation recognizes that taking care of the care partner enables them to be at their best. The 2021 Care Partner Summit | Cumbre Para Cuidadores is recommended for anyone caring for someone living with PD. It will be held online on several days in May in English with Spanish translations available two weeks later. Beginning in June, a set of self-paced online courses will offer videos, journal prompts, and opportunities to connect with care partners around the world about topics of importance so that care partners can better understand their role in managing their loved one's care, create actionable strategies for self-care, develop clear networks for support, and access relevant tools that will empower them in their role as a care partner.
In this podcast, care partner Marlene Perdan relates her journey with her husband, Bill, who received a PD diagnosis at age 51. She tells about her initial shock and fears and how she came to terms with the disease, and about their journey together, using information and knowledge to help them deal with changing situations. Marlene has been involved with the PD community and serves on the committee for the Care Partner Summit.
La telemedicina es el uso de la tecnología para permitir conectar con los doctores de manera remota; es decir, poder usar la computadora como un medio para conectar con su doctor y tener una cita clínica. La telemedicina ha revolucionado el acceso y la calidad de las consultas en los tiempos del coronavirus. Por mucho tiempo, la tecnológica ha estado disponible, pero había muchas limitaciones en el acceso. Ahora, con la pandemia, se han abierto las puertas al uso de esta tecnología.
En este episodio, hablamos con el doctor Adolfo Ramirez-Zamora, neurólogo especialista en la enfermedad de Parkinson (EP) y jefe de división del área de trastornos del movimiento en la Universidad de Florida, acerca de la telemedicina, cómo funciona y cómo superar los posibles obstáculos.
Parkinson’s is a multifaceted disease, and as such, there are many ways people with Parkinson’s disease (PD) can find help, including through medications, exercise, occupational and physical therapy, dance and music therapy, and meditation and mindfulness practices. Another important way is to join a support group to share experiences, learn from peers, and express problems and emotions. Such groups are not just for the person with PD, and care partners often attend and benefit.
In this episode, Allison Allen and Anne Kosem, both licensed clinical social workers and co-coordinators of the Parkinson’s Foundation Center of Excellence at Duke University in North Carolina, talk about their experiences and relate some of their knowledge derived from their years facilitating support groups. They discuss how to find a suitable group, what to expect, and how to participate. They also offer some of the considerations for starting a group if one is not already available in an area. These days, with the COVID-19 pandemic, many groups have gone online, widening the choices by opening up possibilities for choosing groups not in one’s own geographic area.
Nutrition is a vital component of maintaining and preserving good health. It may be an especially important consideration when one has a disease or other health condition that may impose certain dietary requirements or restrictions. At the same time, the standard recommendations for good health still stand – heart healthy eating, weight control, adequate fluid intake, limiting alcohol consumption, and more. With Parkinson’s disease, dietary choices and habits can help alleviate some symptoms. For example, fluid and fiber intake may help with constipation, increasing fluid intake may alleviate orthostatic hypotension, the feeling of dizziness when standing up, and a high protein meal can interfere with levodopa absorption, leading to fluctuations in medication effectiveness. In this second of two episodes with Dr. John Duda, Director of the Parkinson’s Disease Research, Education and Clinical Center at the Philadelphia Veterans Affairs Medical Center and Professor of Neurology at the University of Pennsylvania, a Parkinson’s Foundation Center of Excellence, he tells what he recommends about diet and nutrition for his Parkinson’s patients, including when to look for organically grown produce.
El cuidado de largo plazo es un tipo de seguro que puede ayudar a cubrir el costo de un servicio por si uno llega a enfermar y no puede cuidar de sí mismo. La directiva avanzada le da a uno la oportunidad de escribir antes de que enferme todo lo que desea que le pase o cómo desea que le traten, por ejemplo, en un hospital. El punto clave acerca de estas pólizas es tomar la decisión de elegirlas antes de que uno enferme, especialmente si tiene un historial o algún familiar con una enfermedad avanzada.
En este episodio, hablamos con Pamela Rodriguez, planificadora financiera, sobre el cuidado de largo plazo y las directivas anticipadas. Pamela nos explica sobre la importancia de las directivas anticipadas y de las medidas necesarias para preparar un presupuesto realista y un plan financiero adecuado para el cuidado a largo plazo.
A major thrust of Parkinson’s research today is exploring potential ways to slow the progression of the disease. Exercise may be one way and is recommended. Another possible approach is nutrition, although the evidence is not as solid as for exercise. Nonetheless, there is evidence that good nutrition and dietary practices can have beneficial effects for people with Parkinson’s, including lessening digestive symptoms, as well as preserving quality of life by lowering the risk of heart disease, stroke, diabetes, high blood pressure, and dementia. Improving digestive function may even improve the absorption and actions of medications. Dr. John Duda, Director of the Parkinson’s Disease Research, Education and Clinical Center at the Philadelphia Veterans Affairs Medical Center and Professor of Neurology at the University of Pennsylvania, a Parkinson’s Foundation Center of Excellence, recommends a plant-based, whole foods diet. In this podcast, the first of two with Dr. Duda, he explains what a whole foods diet is, how it differs from a standard American diet, and how people can reliably and comfortably change the way they eat.
It is estimated that about one in six people with Parkinson’s disease (PD) taking dopaminergic medication will develop an impulse control disorder (ICD) sometime during the course of their disease. Such impulsive behaviors may include uncontrolled gambling, eating, shopping, sexual activity, or punding, a purposeless activity in which a person repetitively organizes, sorts, or collects items. ICD’s are more likely to occur in older people on dopamine agonists than in younger people. Some forms of ICD can have devastating outcomes personally or within the family. Fortunately, these adverse effects of the drugs can often be managed well, especially if they are caught early, and in this regard, the family and care partners are key to recognizing and discussing them with the person with PD and the neurologist. In this podcast, Dr. Gregory Pontone, Director of the Parkinson’s Neuropsychiatry Clinic at Johns Hopkins School of Medicine, a Parkinson’s Foundation Center of Excellence, discusses forms of ICD’s, some means to recognize them, and tools for communicating about them.
People with Parkinson’s disease (PD) may experience two seemingly contradictory movement problems. One, bradykinesia, is slowness of movement and is a cardinal symptom of the disease. For a diagnosis of PD, one must have bradykinesia plus either tremor or rigidity. Bradykinesia may appear as a reduction in automatic movements such as blinking or swinging of arms while walking, or it may manifest as trouble initiating intentional movements or just slowness of actions. The second movement problem is dyskinesia, in which people have involuntary, erratic, writhing movements. They can be slow and fluid or rapid and jerking. They are a complication of some Parkinson’s medications and not a symptom of the disease itself. Sometimes people have to decide on their medication dosage and timing whether they would rather be “on” with some dyskinesia or “off” and unable to move well.
In this podcast episode, neurologist Dr. Benjamin Walter delves into bradykinesia and dyskinesia. He is the head of the Section of Movement Disorders and medical director for deep brain stimulation at Cleveland Clinic in Ohio, a Parkinson’s Foundation Center of Excellence. He describes how bradykinesia and dyskinesia can affect people’s lives, what people can do for themselves to alleviate the discomfort, how they can work with their neurologist to minimize the disorders, and what is in development to help.
El Consejo para personas con Parkinson, o el ‘People with Parkinson’s Council’ por sus siglas en inglés, de la Parkinson’s Foundation, es un grupo de personas que viven con la enfermedad de Parkinson, incluyendo cuidadores, que asumen el rol de asesores para la Fundación. Esto asegura que la perspectiva de las personas que viven con Parkinson se integre en el desarrollo de los proyectos, de las investigaciones y del material educativo de la Fundación.
El consejo deja que la voz de las personas con Parkinson sea escuchada y representada. Cuando hay algún proyecto o investigación, la Fundación siempre cuenta con la opinión y con las prioridades de las personas que viven con la enfermedad, quienes saben cómo es vivir con el Parkinson día tras día.
En este episodio, hablamos con Alejandra Borunda, miembro del Consejo para personas con Parkinson de la Fundación. Alejandra nos habla de su experiencia con el consejo y con la Fundación, de sus metas en el grupo, siendo hispanoparlante, y lo que desea lograr para la comunidad hispana del Parkinson.
Adverse effects, often called side effects, are a common phenomenon that accompanies the use of many drugs, including ones used to treat the symptoms of Parkinson’s disease (PD). Any treatment is a balance between the desired effects of a drug and undesirable ones, so how to best ease symptoms while making the treatment tolerable. Specific to classes of drugs used for PD, some of the side effects may be drowsiness, insomnia, light headedness, hallucinations, cognitive impairment, swelling of the legs, dry mouth, weight gain, compulsive behavior, and others. These are just possibilities, and a good working relationship with a PD health care team can help avoid many of them. Beyond the PD team, keeping other health care providers informed is advisable since drug interactions can occur, so all practitioners (including dentists) should be aware of all medications that a person is taking, prescription, over-the-counter and even supplements.
In this podcast episode, neurologist Dr. Irene Richard of the University of Rochester Medical Center discusses several of the various drugs and drug classes used to treat the symptoms of PD in relation to the adverse effects that can accompany them. She offers insights into several ways to avoid or minimize adverse effects of drug therapy, what clinicians should tell people starting a new drug, and what people should ask as well as be aware of and report back.
A team approach to Parkinson’s disease (PD) often results in better outcomes and quality of life for people with PD and their care partners. Members of the team have specific expertise in evaluating and fulfilling the needs of the person and family. One of those members is the social worker, and ideally, one who specializes in chronic or progressive diseases. He or she can assess how the person is functioning in their environment, their emotional state, and their needs. Once the assessment is done, the social worker can help meet those needs by directing people to the most appropriate resources, or in the case of Licensed Clinical Social Workers (LCSW’s), (or the equivalent in some states, Licensed Independent Social Workers), by directly providing therapy in the areas of mental and emotional health. Social workers also can function as a “point person” or starting point for people with PD and care partners who may know what they need but not where to find it or how to access it.
In this podcast episode, Elizabeth Delaney, LCSW, social worker in Columbia University’s movement disorders division and the center coordinator of the Parkinson’s Foundation Center of Excellence at Columbia, describes the role of social workers as part of a Parkinson’s health care team, and she offers suggestions on how people with PD can find a social worker experienced in working with people with progressive diseases.
Among the many non-motor symptoms of Parkinson’s disease (PD) are blood pressure changes. One manifestation is neurogenic orthostatic hypotension, a condition in which blood pressure drops sharply when one moves from a reclining to a more upright position, such as standing up when getting out of bed or rising from a chair. The person may feel lightheaded, dizzy, lose balance, or, rarely, even lose consciousness. Besides being uncomfortable, the condition can be dangerous if it leads to a fall and subsequent injury. Orthostatic hypotension is common in mid- and late-stage PD, but it may also be an early sign of the disease.
Fortunately, there are strategies and other measures people can do for themselves to lessen the problem, and a variety of medications may help. Other conditions and medications can also lead to the condition, and they should be investigated in addition to a connection with PD. In this podcast, neurologist Dr. Katie Longardner of the University of California San Diego discusses the problem, how it is diagnosed, what people can do to alleviate it, and some of the research she and others are conducting.
Many people find that Eastern mind-body practices complement Western medicine well and produce additional benefits. One Eastern system of mind-body integration is tai chi and its martial art practice of tai chi chuan. Using continuous, flowing movements, this moving meditation addresses flexibility through stretching and involves aerobic activity and relaxation as well. Through the practice of tai chi, people can develop better awareness of movement and actions, develop better body alignment, posture, core strength, and breath support and control. Studies have shown physical benefits on balance and slowing the decline in motor control as well as mental health benefits in terms of stress management, possibly cognition, and quality of life for people with Parkinson’s and their care partners. In this episode, Dr. Pei-Fang Tang, professor of physical therapy in the School of Physical Therapy at National Taiwan University, says tai chi is based on ancient Chinese philosophy, part of which is a dynamic balance between yin and yang, which are invoked by the movements in its practice and which bring balance to one’s life.
In honor of Veteran’s day, we want to share Lou Eisenbrandt’s My PD Story about her experience as a Vietnam Veteran whose Parkinson’s disease is a result of exposure to the herbicide Agent Orange during the war. Lou is a steadfast PD advocate and has been involved with the Parkinson’s Foundation Heartland, and recently joined the Parkinson’s Foundation People with Parkinson’s Council.
Impulse control disorders in Parkinson’s disease (PD) are more common than originally thought, affecting an estimated one in six people with PD taking dopamine agonists. They may appear as unhealthy or compulsive levels of shopping, gambling, eating, sexual activity, or involvement in hobbies. They appear to be related to dopamine replacement therapy, so finding the right level of medications can be a challenge to manage symptoms without incurring impulsivity issues. It is important that people with PD, their care partners, and health care professionals be aware of and recognize these activities so that they can be addressed promptly to avoid, for example, social, emotional, economic, and health issues that may result from these disorders. The harm often goes beyond the person with the disorder and can affect family, friends, and others around them. Once recognized, impulse control disorders can often be managed or eliminated by working with a doctor to change dopamine agonist medications or dosage, or in some cases, even going on to deep brain stimulation.
Dr. Mark Groves, Consultant Psychiatrist at the Parkinson’s Foundation’s Center of Excellence at Mount Sinai Beth Israel in New York City, discusses the problem of impulse control disorders, what forms they may take, approaches to recognizing them, and the need to acknowledge them as a biologic condition and not a character or personality flaw.
La alimentación es fundamental para las personas con Parkinson. Para asegurarnos de la fibra, vitaminas, minerales completos y necesarios para nuestros cuerpos, debemos consumir una variedad de alimentos de todos los grupos, como el grupo de los granos, de los colores (los vegetales y las frutas), de la leche (los productos lácteos), y de las proteínas. Con el Parkinson, también vemos que los medicamentos pueden causar efectos secundarios en nuestra nutrición o dieta diaria.
En este episodio, Debbie Polisky, nutricionista y consultora de bienestar, nos explica cómo mantener una mente sana y activa a través de la nutrición y cómo agregar ciertos alimentos, cómo los antiinflamatorios para mejorar la dieta. También nos explica la causa de los efectos secundarios de los medicamentos, como la náusea, falta de apetito, y retención de liquido, y nos da sugerencias de como podemos aliviar estos efectos.
When a person shows up in a doctor’s office with symptoms that may be related to Parkinson’s disease (PD), the diagnosis may not be obvious since symptoms often differ from person to person or could be indicative of other conditions. It’s not uncommon for people go from doctor to doctor over months or even years before they get a correct diagnosis. A visit to a movement disorders neurologist may result in a faster PD diagnosis, but unless PD is suspected, that may not be the first medical specialist on someone’s list.
For some, a Parkinson’s diagnosis comes as a relief; an explanation for previously unexplained symptoms. Others may be stunned, struggling with what the future may look like. As you begin processing your emotions, which can be wide-ranging, it’s important to know you are not alone. In this episode, Gretchen Rosswurm describes her experience with getting a PD diagnosis and how she dealt with it. One way was to take advantage of many of the resources of the Parkinson’s Foundation. Gretchen is now the Chair of the People with Parkinson’s Council of the Foundation. Certainly not everyone accepts or approaches a new PD diagnosis in the same way. So Anna Hedges relates some of the questions she has fielded from newly diagnosed callers as a Parkinson’s Foundation Helpline Information Specialist for the past ten years.
Movement issues are central to Parkinson’s disease (PD), even in the early stages before complications may become obvious. From the time of diagnosis and throughout the course of the disease, movement and staying physically active are essential. Both regular exercise and physical therapy can help people with PD keep moving well and for as long as possible. The Parkinson’s Outcomes Project, the largest clinical study of PD, conducted across the Parkinson’s Foundation’s Centers of Excellence network, showed that physical activity of at least 2.5 hours a week can slow decline in quality of life. Plus, some studies suggest that physical therapy, including gait, balance, resistance training, and regular exercise of sufficient duration may slow the progression of the disease.
Physical therapists with a neurological specialization are an important part of the PD health care team and should be consulted early, both for an initial evaluation as well as to address any movement problems and encourage exercise as a part of treatment to minimize problems later. Heather Cianci is Outpatient Neurological Team leader at the Dan Aaron Parkinson’s Rehabilitation Center, part of the University of Pennsylvania Health System in Philadelphia, a Parkinson’s Foundation Center of Excellence. She says an early consultation can take advantage of a particularly valuable window of opportunity to address movement issues, and improving movement and physical impairments can improve one’s mental state as well.
Clinical studies, studies that involve people, first use healthy people to test a drug’s safety and then use people with a disease or condition to prove that the drug works as intended. They are essential for bringing any new therapy to the public. Getting U.S. Food and Drug Administration approval for devices require rigorous studies, as well. Recruiting enough people to participate is often a long process, and for trials that may go on for a year or more, retaining people in the studies is often a challenge. People may get bored, find multiple study visits burdensome, have an adverse reaction to a drug being tested, move away, or drop out for a multitude of other reasons. If too many people discontinue the study, it will not have enough statistical ”power” to give a meaningful answer when the data are analyzed. Christine Hunter, BSN, RN, Research Director of the Parkinson’s Disease Center and Movement Disorders Clinic at Baylor College of Medicine in Houston, a Parkinson’s Foundation Center of Excellence, describes how her center finds people with Parkinson’s disease who may want to participate in trials, what factors drive retention in trials, and ways to facilitate retention.
When people take a prescribed drug, they rarely if ever consider how it came to be. They assume it is the right drug and will work safely as it is supposed to. But leading up to that drug being available is a long process of discovery or invention of the molecule based on knowledge of the biology it is supposed to affect, then testing in the laboratory and in animals, and several phases of testing in people to make sure that it is safe and effective. Each of these steps takes time and lots of financial investment. Even after a drug is approved by the U.S. Food and Drug Administration for sale and then put on the market, further study of the drug in a larger population than in the testing phases may be carried out. In this episode, Dr. Hubert Fernandez, Director of the Center for Neurological Restoration at the Cleveland Clinic in Ohio, a Parkinson’s Foundation Center of Excellence, describes the process of bringing a drug to market, including how many of them never make it. And he explains why people need to participate in the clinical trials and what they can expect when they do.
Parkinson’s disease (PD) is a multi-factorial condition, with the potential to affect all aspects of people’s lives. Besides the well-known motor and non-motor symptoms, it also can lead to dementia, characterized by impairment of such mental functions as cognition, memory, and judgment, leading to forgetfulness, limited social skills, and difficulties in daily functioning. The decline in mental abilities can range from mild cognitive impairment that does not affect work or daily functioning to dementia, with much in-between the two. Dementia in PD mainly affects a person’s ability to pay attention or concentrate, to multitask and solve problems (executive function), and their visuospatial skills, meaning their ability to see information in three dimensions. It may have less effect on memory than some other forms of dementia.
Parkinson’s disease dementia (PDD) falls under the umbrella term of Lewy body dementia, along with another condition being dementia with Lewy bodies (DLB). In both diseases, Lewy bodies, clumps of alpha-synuclein and other proteins, accumulate in nerve cells in the brain, causing them to lose function.
Because of their similarities, PDD and DLB are distinguished mainly based on when movement symptoms and dementia arise. People with PD early on experience movement symptoms, and years to decades later may develop PDD. With DLB, movement symptoms and dementia start together or within a year of each other. Dr. Jennifer Goldman is the section chief of Parkinson’s Disease and Movement Disorders at the Shirley Ryan Abilitylab and professor of physical medicine, rehabilitation, and neurology at Northwestern University Feinberg School of Medicine in Chicago, a Parkinson’s Foundation Center of Excellence. In this podcast, she describes the similarities and differences between PDD and DLB, talks about medications and cautions, and offers people with PD important suggestions for coordinating medical care and when accessing care.
A través del alcance comunitario para la comunidad del Parkinson de habla hispana, vemos que hay una gran necesidad de servicios no solo en español, sino que respondan a la cultura. También existe un gran interés en desarrollar servicios para la población con acceso limitado a estos recursos. Por esta razón, Claudia Martinez, coordinadora de alcance hispano del Muhammad Ali Parkinson Center, parte del grupo de Centros de Excelencia de la Parkinson’s Foundation, realizó un entrenamiento para los líderes de la salud para ayudar a que otros líderes puedan aplicar las técnicas aprendidas en sus propias ciudades para apoyar la comunidad de habla hispana.
Gracias a una beca comunitaria de la Parkinson’s Foundation, Claudia pudo obtener los fondos para desarrollar este proyecto, creando una red de líderes de la salud interesados en desarrollar programas para la comunidad hispana del Parkinson con un enfoque cultural adecuado.
En este episodio, Claudia nos explica como desarrolló este programa, cubriendo temas importantes como el respeto cultural, la diversidad cultural enfocada en nuestra comunidad hispana, y el alcance comunitario, estableciendo redes comunitarias de apoyo y enfocando estos conceptos en un programa práctico que cada líder pueda desarrollar.
Personalized medicine has garnered a lot of attention over the past decade. Usually it means determining the factors for each person that affect their health, their diseases, and potentially their treatments. Some examples are biomarkers that are found in their blood, their genetic make-up, diet and nutrition, behaviors, and environment. One example is the Parkinson’s Foundation’s PD GENEration initiative that offers free genetic testing and counseling for people with Parkinson’s disease (PD) to determine what genes and gene variants affect the course of their disease and response to treatments.
But despite all the scientific advances that allow these forms of personalized medicine, one crucial aspect of personalized medicine is the voice of the patient, both in each person’s encounters with the medical system and treatment team, as well as to inform the kinds of research that should be done and how to design and perform them. Dr. Bas Bloem, a professor of movement disorder neurology at Radboud University Medical Center in Nijmegen, the Netherlands, a Parkinson’s Foundation Center of Excellence, discusses how people with PD want to be heard and how a new definition of health may best put people’s disease into the overall context of their lives.
Since swallowing involves a complex and coordinated sequence of muscular movements, it is not surprising that difficulties swallowing food or liquids are common in a movement disorder such as Parkinson’s disease (PD). They can cause problems from the inconvenient to troubling, dangerous, or life threatening. Drooling is uncomfortable and can result in social isolation. Not taking in enough food to get adequate calories and nutrients may cause hunger, malnutrition, weight loss, and frailty. Obstruction of the trachea (windpipe) or having food or liquid reach the lungs can be life threatening.
The medical term for impaired swallowing is dysphagia. Fortunately, much can be done to help people with dysphagia, starting with an evaluation by a speech-language pathologist (SLP). This medical professional will take a history, asking about the problem, when it occurs, and how severe it is. The SLP will do a physical examination related to swallowing and a video x-ray or will use an endoscopic camera to visualize the swallowing process while the person with PD consumes foods or liquids with different consistencies, following them from the mouth to the stomach.
Once the form and extent of the problem is determined, the SLP can recommend various techniques for the person to do, as well as recommend ways of preparing foods and liquids that may help alleviate problems. SLP Yael Manor, PhD of the Tel Aviv Medical Center in Israel, a Parkinson’s Foundation Center of Excellence, describes the extent of the problem of dysphagia among people with PD, how she evaluates problems, and ways to alleviate them.
La participación de hispanos en estudios genéticos es necesaria para mejorar el entendimiento de la enfermedad del Parkinson. También aseguraría que los datos de los hispanos estén representados y que esos resultados se tomen en cuenta para iniciativas de salud en caso exista diferencia entre poblaciones. Sin embargo, vemos un porcentaje muy bajo de representación de esta comunidad, debido a varias razones como la falta de información sobre cómo funcionan los estudios y acceso a los hospitales por falta de seguro médico, por ejemplo.
En este episodio, hablamos con el doctor Ignacio Mata, doctor en neurogenética e investigador principal en el departamento de genómica medica en la Cleveland Clinic sobre el siguiente paso en la representación de hispanos en las pruebas genéticas: cómo participar.
Este episodio es el cuarto y final de nuestra serie con el doctor Mata, en la que cubrimos los temas de la genética, la importancia de las pruebas genéticas y la representación hispana en la comunidad de Parkinson.
The Parkinson’s Outcomes Project (POP) is the largest-ever clinical study of people with Parkinson’s disease (PD). Since the beginning of this groundbreaking initiative in 2009, Parkinson’s Foundation Centers of Excellence have been tracking and monitoring the care of more than 13,000 people in five countries with all stages of PD. The goal is to find the most effective therapies, study their benefits, and determine the best candidates for each treatment.
One of the findings of POP is that anxiety is a major factor affecting the overall health of people with PD. Worry about a health condition is normal, but when it becomes constant feelings of worry or nervousness beyond what is understandable, it may be anxiety, a mental health condition. Anxiety is not just a reaction to a diagnosis of PD or the daily stresses that accompany it but is also an integral part of the disease caused by changes in brain chemistry. It may even predate the diagnosis.
As many as 40 percent of people with PD will experience some form of anxiety, such as generalized anxiety disorder, anxiety attacks, social avoidance, or obsessive-compulsive disorder. Fortunately, mental health professionals can help by providing effective talk and, when appropriate, drug therapies. In this episode, clinical psychologist Roseanne Dobkin, PhD, Professor of Psychiatry at Rutgers University in New Jersey, discusses the difference between reasonable worry and problematic anxiety and elucidates some of the ways mental health professionals can help when feelings become distressing or all consuming, interfering with day to day life and activities.
Disease rating scales give clinicians a snapshot in time of the severity of a disease, how it may be affecting a patient, and areas where therapies may be applied. Put together over time, rating scale results can indicate the progression of a disease and possibly help with long term planning. In the case of Parkinson’s disease (PD), the Hoehn and Yahr scale, published in 1967, describes the progression of PD according to five stages from earliest to most advanced, based on severity of symptoms and level of disability. The Unified Parkinson’s Disease Rating Scale (UPDRS) consists of four parts, each of which encompasses several subparts to give an overall total score reflecting the severity of a person’s disease. In 2001, the Movement Disorder Society (MDS) took input from patients and care partners to incorporate into the UPDRS what was important to them and in 2008 published the revised MDS-UPDRS rating scale. Besides evaluating any one person’s disease, rating scales provide criteria for enrollment in clinical trials and help to compare trials and outcomes.
Although rating scales are important tools, and people with PD and their care partners want a gauge of their disease, often people tend to focus too heavily on the numbers whereas what is most important is how the disease is affecting them and how they cope with it. In this episode, Dr. Nina Browner, director of the Parkinson’s Foundation Center of Excellence at the University of North Carolina School of Medicine in Chapel Hill, gives her expert perspective on the use of rating scales and how people with PD may better understand their applicability and how much weight to give the numbers.
Parkinson’s disease (PD) is much more than a movement disorder. It can have wide ranging effects throughout the body. In terms of the brain, people with PD may experience changes in cognition, mood, emotion, perception, attention, sleep, memory, motivation, and the senses, as well as drug-induced behavioral changes. One of the key professionals on a comprehensive PD treatment team is the neuropsychologist, a person with training and expertise in asking questions and administering screening and assessment tests to evaluate a person’s mental abilities and psychological state. Deficits in one or more of these areas can make it difficult to control motor symptoms such as tremor and balance.
Depending on the results of the evaluations, the neuropsychologist can work with other team members to implement therapies and teach strategies to improve the life of the person with PD. Also, it may be useful to have a neuropsychological evaluation early in the course of the disease to establish a baseline so that a neurologist can later determine if changes, especially in cognition, are related to medications, to progression of the PD itself, or to other factors such as depression. In this episode, Dr. Travis Turner, Director of the Division of Neuropsychology and chief liaison to the Movement Disorders Program at the Medical University of South Carolina in Charleston, a Parkinson’s Foundation Center of Excellence, discusses the role of the neuropsychologist, the process of neuropsychological evaluation, and some of the kinds of problems he deals with.
La participación de hispanos en estudios genéticos es necesaria para mejorar el entendimiento de la enfermedad del Parkinson. También aseguraría que los datos de los hispanos estén representados y que esos resultados se tomen en cuenta para iniciativas de salud en caso exista diferencia entre poblaciones. Sin embargo, vemos un porcentaje muy bajo de representación de esta comunidad, debido a varias razones como la falta de información sobre cómo funcionan los estudios y acceso a los hospitales por falta de seguro médico, por ejemplo.
En este episodio, hablamos con el doctor Ignacio Mata, doctor en neurogenética e investigador principal en el departamento de genómica medica en la Cleveland Clinic sobre la importancia de la representación de hispanos en estas pruebas genéticas y la necesidad de educar tanto a hispanos en la comunidad de Parkinson como a los neurólogos sobre esta necesidad de representación para mejorar el entendimiento de la enfermedad.
Este episodio es el tercero en una serie de cuatro episodios con el doctor Mata, en las que cubrimos los temas de la genética, la importancia de las pruebas genéticas y la representación hispana en la comunidad de Parkinson.
Mindfulness is a therapeutic approach to help with stress reduction and its practice can promote good physical and mental health. It is based on deliberately focusing one’s awareness on the present moment with calmness in a non-judgmental way. In those moments, experiences may be external or internal. Examples of external experiences are what the body senses in the surroundings, such as feeling a breeze, hearing a distant train whistle, or smelling a cooking aroma. Internal experiences may be physical, for example, feeling muscles while stretching, hunger, or fatigue, or they may be in the mind, such as emotions or moods.
In being aware of and calmly accepting feelings, thoughts, and bodily sensations in a non-judgmental way in a particular moment, one can achieve a state of alertness through focused relaxation. The process is not complicated and can be learned through in-person sessions or online. It is particularly good for reducing anxiety and depression and for coping with and adapting to stress in the moment or long term, including the stress of a disease like Parkinson’s. In this podcast, Angela Johnson, a doctor of acupuncture and Chinese medicine at Rush University in Chicago, a Parkinson’s Foundation Center of Excellence, gives some simple examples of mindfulness practices, how they may benefit people in periods of stress, and how to fit mindfulness into one’s normal routine.
Mindfulness is a mental state in which one focuses his or her awareness on the present moment, whether that focus is on the mind, body, or surroundings. In this therapeutic technique, one works towards calmly accepting feelings, thoughts, and bodily sensations in a non-judgmental way with the goal of achieving a state of alertness through a focused relaxation.
The practice of mindfulness can be learned in a relatively short time through in-person sessions or even online. It can lead to benefits for both the mind and body, helping to reduce anxiety and depression, encouraging acceptance of emotions, and producing better adaptive reactions to difficult situations. With Parkinson’s disease, it may also help with movement and stiffness. In this podcast episode, Jordan Staenberg, a doctor of occupational therapy and a certified yoga therapist at the Barrow Neurological Institute’s Muhammad Ali Parkinson Center in Phoenix, Arizona, a Parkinson’s Foundation Center of Excellence, elaborates on what mindfulness means, how one can learn to practice it, and its benefits.
Para entender el rol que juega la genética en la enfermedad de Parkinson, primero hay que entender de que consiste la genética y como la comunidad hispana puede participar en el avance de la investigación a través de las pruebas genéticas.
En este episodio, hablamos con el doctor Ignacio Mata, doctor en neurogenética e investigador principal en el departamento de genómica medica en la Cleveland Clinic sobre la significancia de las pruebas genéticas y de las iniciativas PDGENEration y el Parkinson’s Outcomes Project de la Parkinson’s Foundation.
Este episodio es el segundo en una serie de cuatro episodios con el doctor Mata, en las que cubrimos los temas de la genética, la importancia de las pruebas genéticas y la representación hispana en la comunidad de Parkinson.
Clinical studies fall into two main categories – observational and interventional. An observational study is non-experimental. Researchers observe the effects of a risk factor, such as an inherited gene, or air quality, or a treatment that has already been applied. Researchers have no control over the variables. Such a study can show a correlation between the variable and the observed outcome but cannot prove that one caused the other. In an interventional study, such as a clinical trial, researchers introduce an intervention, such as a drug treatment, exercise, or meditation and then observe the results. A rigorous form of an interventional trial divides people into two or more groups, one receiving the intervention and, for example, the other receiving a placebo or standard treatment. Both types of study are valuable, and sometimes the findings from an observational study can suggest a hypothesis and lead investigators to design a clinical trial.
The Parkinson’s Foundation’s PDGENEration: Mapping the Future of Parkinson’s Disease is a flagship initiative providing free genetic testing and genetic counseling to look at specific Parkinson’s-related genes and connect their presence with disease course, medication usage, and other outcomes. Besides potentially helping people with Parkinson’s manage their disease better, the results may empower clinical trial design, such as seeing how a medication may affect the disease depending on what type of gene is present. Dr. Tanya Simuni, Chief of Movement Disorders at the Northwestern University Feinberg School of Medicine in Chicago and Dr. Michael Schwarzschild, director of the Molecular Neurobiology Laboratory at Massachusetts General Hospital in Boston, discuss some aspects of clinical studies in PD and why it is important for people with PD to participate in them. Both institutions are Parkinson’s Foundation Centers of Excellence.
Self-awareness is an ability to focus on one’s own thoughts, actions, and emotions and evaluate and manage them according to what standards and values you set for yourself. Being self-aware from moment to moment can lead to better self-understanding and an ability to manage thoughts, emotions, strengths, weaknesses, beliefs, and motivations, with a goal of a more peaceful existence. Fortunately, self-awareness can be learned and cultivated using some simple techniques. Dr. Carsten Eggers, Professor of Neurology and Co-director of the Parkinson’s Foundation Center of Excellence at Philipps University in Marburg, Germany, discusses self-awareness and how health confidence, the confidence to be able to manage health problems, relates to it.
Para entender el rol que juega la genética en la enfermedad de Parkinson, primero hay que entender de que consiste la genética y como la comunidad hispana puede participar en el avance de la investigación a través de las pruebas genéticas.
En este episodio, hablamos con el doctor Ignacio Mata, doctor en neurogenética e investigador principal en el departamento de genómica medica en la Cleveland Clinic. Este episodio es el primero en una serie de cuatro episodios con el doctor Mata, en las que cubrimos los temas de la genética, la importancia de las pruebas genéticas y la representación hispana en la comunidad de Parkinson.
The Aware in Care (AIC) kit is one way to ensure patient safety during a hospitalization. It provides useful tools to use before, during, and after a hospitalization, such as a list of medications that a person with Parkinson’s disease is taking, instructions to the hospital staff about dispensing medications on the person’s individual schedule, a list of drugs that should not be administered, and more. As useful as the AIC kits may be for the person with PD, another aspect for a safe and successful hospital stay involves the hospital staff being knowledgeable and the hospital systems being ready to treat a person with PD. For that, the staff needs to know about the unique needs of people with PD and be prepared to meet them. That’s where AIC Ambassadors come in. This podcast episode describes a success story of AIC Ambassador Kathy McMurray reaching out to and working with nurse administrator Sara Holman, Director of the Ortho-Neuro Service Lines at Deaconess Health System in Evansville, Indiana, both of whom were instrumental in educating hospital staff and refining the electronic medical records system to meet the unique needs to treat people with PD.
A veces es difícil diagnosticar la enfermedad de Parkinson (EP) en un inicio ya que la forma de que se presenta siempre varía. Por ejemplo, para ciertas personas, la enfermedad se puede presentar con mucho temblor, mientras que otros pueden sentir un trastorno de balance o rigidez. Por estas diferencias en cada persona con EP, es difícil hacer un diagnóstico certero inicialmente. En la primera parte de este episodio, el doctor Guillermo Moguel-Cobos, neurólogo en el centro de atención Muhammad Ali Parkinson del Instituto Neurológico Barrow, habla de los síntomas tempranos de la enfermedad y consejos que le daría a las personas recién diagnosticadas que empiezan a tener estos tipos de síntomas.
En la segunda parte de este episodio, hablamos con el doctor Julio Angulo sobre un tema que se cubre con muy poca frecuencia, la vergüenza, aunque muchas personas recién diagnosticadas o con varios años viviendo con la enfermedad la sienten. A través de su investigación, el doctor Angulo analiza el aislamiento de la persona con Parkinson y como se conecta con la depresión, la ansiedad, y la vergüenza. Al vivir él mismo con la EP, el doctor Angulo nos ofrece un punto de vista único.
When people with Parkinson’s disease (PD) are admitted to a hospital, it is most often not for their PD but is for some other condition. Nonetheless, they have unique needs related to their PD that nurses and doctors may not be aware of. Thus, the patient or caregiver must inform the staff of those needs. A major consideration is the timing of medications. The typical hospital practice of dispensing medications every three or four hours may not work for someone with PD who has carefully worked out with their neurologist the best individual medication schedule to give them the best outcomes. One helpful resource is the Parkinson’s Foundation’s free Aware in Care kit that can specify what medications should be given to that individual and when. In this episode, Edie Simpson, a retired neurology nurse from the Muhammad Ali Parkinson Center in Phoenix, Arizona, a Parkinson’s Foundation Center of Excellence, describes how hospitals typically operate and explains why a person with PD or a care partner must educate hospital staff and be an advocate for the hospitalized person to ensure the best and safest care possible.
Medication is a mainstay of treatment of Parkinson’s disease (PD), and can vary for each person with PD. Each medication has its own properties, and healthcare professionals have reasons to choose certain ones at various times as conditions warrant. At those times, people with PD and their care partners need to ask questions about the reasons for starting specific medications, what they can expect, and whether they will interact well with other medications. This advice applies to all medications, not just ones for PD. All healthcare providers need to be aware that someone has PD and what medications they are taking because not only can they interact with other medications, but they may also affect what procedures can be performed and when. Emily Peron, PharmD, of Virginia Commonwealth University School of Pharmacy in Richmond discusses these issues and more, with advice about medications, their effects and adverse effects, and medication changes.
As for many chronic conditions, a multidisciplinary, team approach can often produce the best outcomes for people with Parkinson’s disease (PD). With many health care professionals specifically qualified in PD working together in a coordinated manner, treatment can focus on current areas of concern and those that come up as the disease progresses. But questions arise as to how often the person with PD and care givers should visit their health care professionals, how to provide care with the least burden and disruption on them, and who should coordinate the care. As the director of the Parkinson’s Foundation Center of Excellence at the Royal Derby Hospital in the United Kingdom, Dr. Rob Skelly discusses the makeup of his team and how they approach patients at different stages of the disease.
Hay muchos síntomas que no son motores que se presentan en la enfermedad de Parkinson. Estos síntomas pueden incluir depresión, ansiedad, trastornos del sueño y signos cognitivos.
En este episodio, hablamos con la doctora Irene Litvan, Profesora de Neurociencias y Directora del Centro de Parkinson y Otros Trastornos del Movimiento (PMDC) de la Universidad de California San Diego (UCSD), sobre la causa de los síntomas no-motores de la enfermedad de Parkinson, como pueden detectar estos síntomas y formas de aliviar los síntomas de parte de un ser querido o cuidador.
New tools in genetics are providing researchers with insights into diseases never before obtainable. For Parkinson’s disease (PD), research promises to reveal specific genes and mutations that contribute to the risk of developing PD as well as mechanisms by which these genes act. Along these lines, the Parkinson’s Foundation has launched PD GENEration, a flagship initiative that offers free genetic testing and genetic counseling for people with PD. Participating and contributing one’s genetic data, DNA, and blood can help scientists advance their understanding of the disease, improve research and care, accelerate enrollment in clinical trials, and aid in the development of better treatments.
The PD GENEration initiative is another step in the development of personalized medicine. Participants receive results of their genetic testing as it pertains to PD, which may allow them to better manage their disease in the future.
In this podcast Dr. Martha Nance, medical director of the Struthers Parkinson’s Center in Minneapolis, Minnesota, a Parkinson’s Foundation Center of Excellence, talks about some of the genes related to PD that are under investigation, how they work, and what their effects are, both biologically and in terms of how they may influence the course of the disease.
Among the treatments for Parkinson’s disease (PD), the most common are medications, which can work well up to a point. But when motor symptoms are not adequately controlled with drugs, deep brain stimulation (DBS) may be an option. Using electrodes placed in the brain, an implantable pulse generator (IPG) placed in the chest or abdomen, and a wire that connects the two, this system targets electrical currents to precise structures within the brain to block the abnormal nerve signals that cause tremor and other motor symptoms.
Originally approved by the U.S. Food and Drug Administration in 1997 to treat PD tremor, DBS approval was extended to treating advanced PD symptoms in 2002, and in 2016, to earlier stages of the disease when drugs wear off too quickly or other motor symptoms such as tremor, rigidity, stiffness, or slowness of movement become disabling. However, DBS is not a cure for PD, does not prevent its progression, and is, in fact, brain surgery. In this podcast, Dr. Nader Pouratian, Professor of Neurosurgery and director of the Neurosurgical Movement Disorders Program at the University of California, Los Angeles, discusses how DBS works, what benefits it can and cannot provide, who may be good candidates for it, possible complications, and what’s ahead.
When we think of medicine from a Western perspective, we often think of treatments including things such as drugs, surgical operations, or rehabilitation therapies like physical, occupational, or speech therapy. While these treatments may be coordinated by a neurology or movement disorders office, most often they are not.
However, in many Eastern cultures, medicine exists as integrated systems. For example, there is traditional Chinese medicine that considers a vital energy (“ch’i”) circulating in channels throughout the body, with disease seen as disharmony of the complementary aspects of yin and yang. This is addressed with the use of herbs, acupuncture, massage, exercise, dietary therapy, and other techniques aimed at restoring a healthy balance. Similarly, Indian Ayurvedic medicine is a holistic healing system based on the concept that health and wellness depend on a delicate balance among the mind, body, and spirit.
However, most if not all of the herbs, supplements, and other compounds that are sold in the West for use in traditional Ayurveda or Chinese medicine and alternative/complementary medicine in general are not tested by the Food and Drug Administration, or FDA, to be determined as safe, and they may not even contain what they are purported to be. In this episode, Dr. Benzi Kluger, Professor and neuropalliative care specialist at the University of Rochester, a Parkinson’s Foundation Center of Excellence, discusses complementary/alternative medicine from a Western perspective, with an eye on what may be safe to try, as well as some cautions.
Para una persona con Parkinson, es muy importante entender los periodos de “on”, cuando tiene efecto el medicamento y “off”, cuando para de tener efecto, para medir cuando tomar las pastillas a tiempo. También es esencial prepararse para la cita con el neurólogo para asegurar que sus preguntas sean contestadas.
En este episodio, hablamos con la doctora Maria Cristina Ospina, neuróloga especialista en Parkinson. Hablamos del significado del horario fijo para el medicamento y también sobre como se puede preparar para la cita con el neurólogo.
Our bodies contain more than just our own human cells. We normally live in harmony with a vast array of microorganisms occupying specific spaces, or niches, on and within us. These bacteria, fungi, viruses, and protozoa form the human microbiome. The ones in the gut, mainly within the colon (large intestine), normally maintain a health balance and keep “bad” microbes from overpopulating that area of the digestive system. The normal gut organisms, consisting of around 1,000 different species of bacteria as well as other microbes, outnumber all the human cells in our bodies.
The gut microbiome acts locally and systemically, meaning it interacts with other parts of the body. Locally in the gut, the microbiome digests foods, helps to regulate the immune system, and produces vitamins that our bodies need for metabolism, nerve function, and blood clotting but that they cannot produce on their own.
There is mounting evidence that the gut microbiome also interacts with the nervous system, including the brain, in health and disease. Its effects also reach beyond the gut. Evidence points to a role for it in the faulty regulation of the immune system, leading to such diseases as rheumatoid arthritis, multiple sclerosis, diabetes, and allergies.
In this episode, Ai Huey Tan of the University of Malaya in Kuala Lumpur, Malaysia discusses what is known about the role of the gut microbiome as it affects Parkinson’s disease and its treatment and what researchers are continuing to investigate.
Since the early 2000’s, centers of excellence for various diseases or procedures have become common. These are specialized programs within healthcare institutions that bring together experts and resources to target different aspects of the disease or condition to give patients a unified resource for addressing their needs in a comprehensive manner. Besides optimizing resources for patients, the centers of excellence provide advantages for healthcare providers by integrating experts and resources to draw upon within one organization.
Much work goes into assembling and being designated a Parkinson’s Foundation Center of Excellence. At this point, the Parkinson’s Foundation has recognized 48 CoE’s – 34 in the United States and 14 international. Not only do they have to have clinical expertise, but part of their mandate is to do research, education, and community outreach to underserved communities that otherwise could not access the CoE or find appropriate care within their own locales.
In this episode Clarissa Martinez-Rubio, Senior Director of Clinical Affairs of the Parkinson’s Foundation, describes what these centers are and the criteria for earning a designation as a CoE. Then Joe Salvatore talks about his mother’s experience getting a second opinion at a Parkinson’s Foundation CoE and how it helped change the course of her disease.
How and why Parkinson’s disease (PD) starts and progresses is still not exactly known, but active research points to genetics and environment, among other factors. The environment is both external and internal – external in terms of what people encounter outside their bodies and internal in terms of what is inside their bodies. Researchers studying a variety of diseases have learned the importance of the microbiome in health and disease. The microbiome consists of all those bacteria, fungi, and viruses that occupy niches on and inside of people, such as on the skin, in the nose and mouth, and in the gut. These organisms can have far reaching effects in the body, distant from their own locations. Some of these interactions can affect the brain.
Ali Keshavarzian, MD, Chief of the Division of Digestive Diseases and Nutrition at Rush University in Chicago has been studying the role of the gut microbiome and its relation to inflammation, such as in inflammatory bowel disease, in addition to more distant sites including in the brain. His research includes the role of the gut microbiome as a contributing factor to the development and progression of PD as well as the potential to manipulate it to help manage the disease. He conducts both basic science research using animal models and clinical research with people with PD.
Many diseases have a genetic component. In most instances, these gene variants are risk factors for the disease, that is, they raise the risk that someone might develop the disease. It is estimated that 10% to 15% of people with Parkinson’s disease (PD) have a genetic form of the disease, and several genes have been identified that may raise the risk of developing PD or may affect its severity and course. Professional genetic counselors can help people sort out their risks, advise them on the pros and cons of getting a genetic test, and explain and put into perspective the results of genetic tests. The Parkinson’s Foundation has recently initiated the PD GENEration study, which will ultimately recruit and provide genetic testing and counseling to 15,000 people with PD to investigate the relationship between genes and PD. A crucial component of the study is genetic counseling. In this podcast, Certified Genetic Counselor Jenny Verbrugge, MS, CGC of Indiana University, a Parkinson’s Foundation Center of Excellence, discusses the role of genetic counseling in general, in what situations people may want to avail themselves of it, and the value of home genetic tests versus those performed by a clinical laboratory.
Problems with gait, or how you walk, are common in Parkinson’s disease (PD). These problems can include slow walking, shuffling, foot drags, less arm swinging than normal, and difficulty turning. One particularly troubling problem is freezing of gait, where a person with PD may be “stuck in their tracks” and feel that his or her feet are glued to the floor. The danger is that the person may fall forward or backward and incur injuries to the head, face, or wrists. Fortunately, there are effective remedies that can help mitigate gait disturbances, such as rehabilitation and exercise to improve one’s walking and balance. For some, the use of audible signals, such as key words, music or a metronome, to time and coordinate steps can be useful. Additionally, many will use visual cues, whether a marker secured the floor or even a laser pointer that projects a spot on the floor to use as a target to walk towards. In this episode, Dr. Jay Nutt, Emeritus Director of the Parkinson’s Center at the Oregon Health and Science University in Portland, a Parkinson’s Foundation Center of Excellence, discusses the problem of freezing of gait and offers remedies.
Parkinson’s disease (PD) is often thought of in terms of its motor symptoms, such as slowness of movement, stiffness, and tremor. While l-dopa and dopaminergic drugs can help alleviate the motor symptoms of PD, patients are often also troubled by common non-motor symptoms such as fatigue, pain, sleep disturbances, constipation, urinary and sexual problems, and disturbed mood or cognition. The good news is there are ways to address these problems, such as with other medications, visits to PD specialized therapists, exercise, dance, and other movement regimes. An awareness of non-motor symptoms and their connection to PD can help people with Parkinson’s find therapists, activities, and solutions that may alleviate the symptoms. In this podcast, Dr. Daniel Van Wamelen of King’s College in London discusses non-motor symptoms and ways to address them.
People who treat Parkinson’s disease (PD) and many people with PD know that there is not one typical form of the disease. One thing that may affect its symptoms and course is a person’s genetic make-up. The different genes that are risk factors for PD and the variations between them and even within the same gene may determine how the disease presents, progresses, and responds to treatments. With the aim of uncovering genes and mechanisms responsible for PD, the Parkinson’s Foundation initiated PD GENEration: Mapping the Future of Parkinson’s Disease, a study to look at the genes of 15,000 people with PD and correlate those findings with disease symptoms, progression, and response to treatments.
At the same time, participants in PD GENE will quickly get feedback on their genetic status that may allow them to enter clinical trials specific for the risk factors that they carry. The results will be much more comprehensive than what commercial genetic tests can provide, and it will all be free to the participants, including genetic counseling. In this podcast, neurologist and lead investigator, Dr. Roy Alcalay of Columbia University, a Parkinson’s Foundation Center of Excellence, and patient advocate Anne Hall give some background on the PD GENE genetics initiative.
Sexuality and intimacy can greatly add to quality of life at all adult ages. Sexuality is much more than just physical sexual functioning. It encompasses self-image, attraction to others, and a broad spectrum of emotional components. Certain complex problems may arise for people with Parkinson’s disease (PD), including motor and non-motor symptoms, sexual functioning, diminished pleasure, and changes in relationship dynamics because of PD symptoms or drugs used to treat it. Problems such as under-sexuality or over-sexuality may also occur with PD. These problems need to be recognized and evaluated clinically by someone on the Parkinson’s care team, which may be a neurologist, nurse, physical or occupational therapist, social worker or a sex therapist who is familiar with the disease. Decades of clinical experience in movement disorders clinics as well as published research has led to practical approaches to these problems. Based on the longstanding relationship with their patients over the course of the disease, clinicians are in a good position to establish rapport with patients and care partners to educate them about potential sexual problems and help them directly or refer them as needs arise. In this podcast, Gila Bronner, director of sex therapy services at the Sheba Medical Center in Israel and a Certified sex therapist and researcher at the Movement Disorders Institute at the medical center, talks about some of the sexual problems one may encounter with PD and offers practical advice for dealing with them and enhancing intimacy.
Driving is a complex skill and behavior but something that we often take for granted since it is a common and crucial part of modern life. It involves attention, vision, perception, cognition, memory, anticipation, motor control, reaction time, and more. Parkinson’s disease (PD) can affect several of these abilities, and as the disease progresses, driving may become more of a problem. So it is crucial that people with PD establish a good rapport with their health care providers to make sure that they are competent and safe on the road for their own sake as well as for the safety of others.
For many years, Dr. Ergun Uč of the University of Iowa has been studying driver safety in PD. He is the director of the Division of Movement Disorders at the university, which is a Parkinson’s Foundation Center of Excellence. He says decisions about fitness to drive should not be based solely on the medical diagnosis or age as these measures alone may unfairly deny people their mobility and independence or may mistakenly allow unfit drivers to stay on the road. In making the decision about fitness to drive, he advocates adding empirical observations of performance, and thus, his research has focused on validating tests to judge driving safety of people with PD.
Parkinson’s disease (PD) may turn out to be not one disease but a group of similar conditions with different genetic risk factors, varying symptoms, and courses. Different genes may have variations between them or even variations within the same gene, with implications for symptoms, progression, and treatments. To help uncover key mechanisms responsible for PD and its progression, the Parkinson’s Foundation has launched PD GENEration: Mapping the Future of Parkinson’s Disease to study the genetic makeup of 15,000 people with the disease. The two main genes targeted in the study are carried by a minority of people with PD, but they may offer insights into mechanisms of the disease that operate in the larger population. In this podcast, Parkinson’s Foundation Chief Scientific Officer Dr. Jim Beck describes the goals of this Parkinson’s study, how genes affect the course of the disease, and ultimately, how the results of the study may empower people to take better control of their disease.
Researchers and clinicians are learning that Parkinson’s disease (PD) is an umbrella term that covers similar but distinct variants of the disease that may result from differences in biology. Symptoms may be similar, but each person’s disease may have different features, rate of progression, needs, and treatments connected to the specific underlying cause. In this era of “personalized” medicine, a goal is to treat each person’s condition according to their unique disease. To do so, neurologists will need to be able to define and identify those differences (“biomarkers”) that will allow a truly personalized approach to treatment. A biomarker is a measurable indicator of a normal or abnormal bodily function. Examples are imaging such as MRI, chemicals in the blood or brain, brain wave patterns, sleep cycles, or even specific signs and symptoms.
Having biomarkers indicative of specific variants of the disease could help to design clinical trials to test therapies. It would allow researchers to include individuals with similar underlying biology when they test a potential new drug to be able to understand if it works for that form of PD. In a trial that included people falling under the umbrella term of “PD,” for example, researchers could see who benefited from the drug and then examine them to see what biomarkers they had in common. In this podcast, Dr. Anthony Lang, Director of the Edmond J. Safra Program in Parkinson’s Disease at the Toronto Western Hospital in Canada, discusses the need for biomarkers when searching for disease-modifying therapies – those treatments that can actually modify the course of PD and not just treat its symptoms. And he tells us why it is sometimes hard to tell the two apart.
While Parkinson’s disease (PD) is a broad category that includes similar symptoms, each person’s disease may have different features, rate of progression, needs and treatments connected to the specific underlying cause of that person’s disease. As we move towards “personalized” or “precision medicine,” which strives to treat each person’s condition according to their unique disease, research in neurology needs the tools to be able to define differences that can allow a truly personalized approach to treatment. Measuring biomarkers, measurable features that are characteristic of a disease, is one of these tools that provides a better understanding of the disease’s underlying biology and causes. They could be imaging such as MRI, chemicals in the blood or brain, brain wave patterns, or even specific signs and symptoms.
Knowing the underlying causes of the disease can help to design and test therapies that could slow down or stop PD. Using biomarkers would be especially helpful for the design of clinical trials for several reasons. It would allow researchers to segment testing of medications by individuals with similar underlying biology in order to understand if it works for all or just some types of Parkinson’s. It would also help us better monitor if and how a drug is working. Neurologist Dr. Alberto Espay of the University of Cincinnati proposes that Parkinson’s research requires a new way of thinking based on biomarkers to know precisely what kind of disease one is dealing with, especially when participating in clinical trials. Drugs that work for one form of PD may not work for another. Dr. Espay compares the precision of treating Parkinson’s today to where the cancer field was 30 years ago.
Many people with Parkinson’s disease want to continue to work and contribute their skills in the workplace. Sometimes all it takes is recognition of their condition by their employer and accommodations to compensate for disabilities. In fact, the Americans with Disabilities Act (ADA) provides certain protections in the workplace for people with disabilities once they reveal their situation to their employers, who are then required to make reasonable accommodations to do the job. In this second of two parts on talking to your employer about PD, Jim Sinocchi, Managing Director of the Global Office of Disability Inclusion at JPMorgan Chase & Company, a multinational investment bank and financial services company based in New York City, describes how the company recruits people with disabilities in their offices worldwide and assimilates them into the work environment. As the name of his office denotes, Chase considers inclusion an important aspect of facilitating the best job performance from everyone. From an employee’s perspective, Brian Baker, an executive recruiter and a former employee of JPMorgan Chase, describes his experience while there and gives his take on some workplace issues as a person with young onset Parkinson’s disease, including how to get job accommodations implemented in a timely manner.
Employment situations can present a tricky situation for someone with a medical condition such as Parkinson’s disease. One big decision for employees with physical, emotional, or mental conditions is whether and when to disclose to employers or coworkers their condition and what accommodations they may need to do their job. The Americans with Disabilities Act (ADA) provides certain protections against discrimination for employees who disclose their conditions to their employers, who are then required to make “reasonable accommodations” to allow the person to do his or her job. However, ADA protections apply only if the employee has disclosed a disability or health condition to the employer. Even then, some restrictions may apply. For part one of a two part series on Talking to Your Employer about PD, occupational therapist Julia Wood of the Dan Aaron Parkinson’s Rehabilitation Center at the University of Pennsylvania in Philadelphia, a Parkinson’s Foundation Center of Excellence, discusses when and how to talk with an employer, how to prepare before having the conversation, documenting it, and the decision to also reveal one’s condition to coworkers.
Just as Parkinson’s disease (PD) affects movements in other parts of the body, it can affect muscles of the face, mouth, and throat, leading to problems with speech and swallowing. People with PD may experience voice problems during the course of their disease. The problems tend to increase as the disease progresses but may occur at any stage. Speech is one way we communicate and stay socially engaged, but facial expressions and gestures also convey meaning and intent. Thus, PD can hamper communication in multiple ways. Some signs of voice problems include feedback that you are speaking too quickly or slowly, being told that companions cannot hear or understand you clearly or having to strain to speak loudly enough to be heard. Darla Freeman is a Speech-Language Pathologist at the Florida Center for Voice and Swallowing in Tampa with special interests in the evaluation, diagnosis, and management of voice disorders. In this podcast, she discusses voice problems in PD, some methods to alleviate them, and overall communication.
People with Parkinson’s disease (PD) need their medications on time, every time. Getting them too soon or too late can cause problems. So when a person with PD enters the hospital, which happens 50 percent more often than their peers, the staff often needs to be educated on the importance of delivering medications at the right dose and at the right times - times that may differ from the usual times that medications are dispensed. When medication timing is off or doses are missed, there can be serious complications that are sometimes then treated with medications that make the situation even more dangerous. So the Parkinson’s Foundation has developed a kit, called Aware in Care, that patients can take with them to the hospital to specify the critical nature of getting medications on time, and the medications that should always be avoided. Annie Wallis, Associate Director of Education at the Foundation, and Leslie Peters, Vice Chair of the People with Parkinson’s Advisory Council for the Foundation, Aware in Care Ambassador, and a care partner for her husband with PD, talk about problems that can arise in the hospital, how to prepare for a hospitalization using the Aware in Care kit, and how the Aware in Care Ambassador program is dedicated to educating hospital staffs around the country to help make the kit most effective.
Standard practice in neurology uses imaging, such as magnetic resonance imaging, or MRI, of brain structures to make a diagnosis. But in Parkinson’s disease (PD), additional imaging technologies are needed since MRI is not particularly helpful to make the diagnosis. Recent studies have turned to brain imaging using new technological tools, looking for ways to better assess the disease, predict its progression, and evaluate potential drugs to treat it or slow its progression. Biomarkers that can be seen in this type of brain imaging can be physical structures or biochemical signals, and researchers believe some correlate with the motor abilities of people with PD. Dr. Jon Stoessl of the University of British Columbia in Canada uses positron emission tomography, or PET scans, to research chemical biomarkers in the brain, such as dopamine, for these purposes.
More than ten million people around the world live with Parkinson’s disease (PD). The World Parkinson Coalition (WPC) is a nonprofit organization that provides an international forum on the disease and every three years holds the World Parkinson Congress. The 2019 congress will be in Kyoto, Japan in early June, bringing together people with PD, care givers, physicians, scientists, nurses, and rehabilitation therapists for a worldwide dialogue to improve and expedite advances in treatment practices. Through large forums and smaller sessions, attendees will share knowledge and ideas. Eli Pollard, VP of Education at the Parkinson’s Foundation and Executive Director of the WPC, says its goal is to bring these diverse constituencies together to engage in high level discussions of a wide range of aspects of Parkinson’s, including treatment, scientific advances, and care options.
Parkinson’s disease affects people around the world, so societies in different countries manage it according to their own circumstances. Singapore, a modern, prosperous southeast Asian country, has a rapidly aging population, and thus, an increasing need to provide services to people with Parkinson’s, which occurs mainly in older individuals. Workers at the National Neuroscience Institute in Singapore, a Parkinson’s Foundation Center of Excellence, recognized that hospitals and nursing homes cannot handle the impending health care burden themselves and have therefore designed and implemented three community outreach programs to serve people with PD and to educate health care workers how best to serve this population. Dr. Louis Tan of the Department of Neurology describes these programs, how people respond to them, and alliances they have made with other organizations.
How medical education is structured affects doctors in training, and thus, how they practice later on. Their level of experience with different diseases and conditions determines how they will be able to diagnose and treat the people who come to them for help. Given the relatively limited time for medical school and advanced training in light of the vast variety of diseases, medical educators have to be selective about what they require trainees to experience.
A core curriculum gives medical students exposure to various medical specialties in their “rotations,” in which they spend several weeks at a time in one specialty area. Trainees have some leeway in what electives they wish to pursue beyond the core curriculum. As important as neurology is, often trainees are not required to take it, and some elect not to. Dr. Sagari Bette of the University of Miami Miller School of Medicine Parkinson’s Disease and Movement Disorders Center, a Parkinson’s Foundation Center of Excellence, says it is important for medical students to get a good foundation in neurology and movement disorders early in order for them to best care for people with Parkinson’s disease and other movement disorders once they are in practice. She explains how medical education is done now and proposes how it could be improved in the future, including the use of educational videos.
Everyone should practice good oral health care, but it is particularly critical for people with Parkinson’s disease (PD). Unfortunately, at the time of diagnosis, many people do not receive information about oral health problems that may arise later in the disease. Parkinson’s symptoms can complicate oral care at home and dental professionals need to be aware of their patient’s PD so that they can provide appropriate care at frequent intervals. In this podcast, Cameron Jeter of the dental school at the University of Texas Health Science Center in Houston describes what she calls the “Dreaded D’s” – dry mouth, drooling, dysphagia or swallowing difficulties, and deadly bacteria. Beyond discomfort and inconvenience, these problems can affect a person’s quality of life and can even present a risk to their life, for example, through choking or inhaling bacteria that can lead to pneumonia. Dr. Jeter offers some helpful suggestions to maintain oral care and avoid problems.
Given the differences women may encounter when dealing with their Parkinson’s Disease (PD), the Parkinson’s Foundation is leading the first national effort to address gender disparities in Parkinson’s research and care as part of an overall Women and PD Initiative. The Women and PD Teams to Advance Learning and Knowledge project (Women and PD TALK, for short) aims to develop new patient-centered recommendations to improve the health of women living with PD. Over the two-year term of the project, a national network of ten sites is engaging experts in the patient, research, and health care communities to identify women’s needs, prioritize solutions, and create the recommendations. Using these insights, the Parkinson’s Foundation and leadership teams will develop action plans to improve Parkinson’s care for women. In this podcast, Megan Feeney, a Senior Manager in the Community Engagement Department of the Parkinson’s Foundation, and Jessica Shurer, Clinical Social Worker and Center Coordinator of the Parkinson’s Foundation Center of Excellence at the University of North Carolina in Chapel Hill, discuss the reasons for the project, the personnel involved in it, how it will run, and its goals. While the project is just starting, it is already producing actionable insights.
If a person develops symptoms of tremor, slow movements, and stiffness, it could be early signs of Parkinson’s disease (PD) but it may also be the beginnings of any of a group of conditions known by the general term “parkinsonism,” conditions that have some symptoms in common with PD but differ in important ways. Also called atypical Parkinson’s disease or Parkinson’s plus, they tend to progress faster, and they may or may not respond to levodopa, and possibly only show modest benefit. While Parkinson’s disease represents 85-90% of all cases of parkinsonism, a definitive diagnosis for atypical parkinsonism may never be made while the person is alive. Licensed Clinical Social Worker Paula Wiener, a Senior Parkinson’s Information Specialist with the Parkinson’s Foundation, describes the difference between Parkinson’s disease and parkinsonism and gives some examples of Parkinson’s plus. As with PD, exercise is highly recommended for these atypical parkinsonian syndromes.
For a person newly diagnosed with Parkinson’s disease (PD), a second opinion from a movement disorders specialist can be a valuable endeavor. It may help to confirm the diagnosis, discover a different condition leading to the symptoms the person is experiencing, or address any lingering unanswered questions from the person’s encounter with the first physician especially if there was any discomfort with the interaction. In this podcast, Dr. Carlos Singer, Director of the Division of Parkinson’s Disease and Movement Disorders and the Director of the Parkinson’s Foundation Center of Excellence at the University of Miami Miller School of Medicine in Florida, describes the importance of getting a second opinion and his approach during the visit, which can be a good guide for what people should expect or ask when they see the second physician. He also talks about how different people come to terms with and accept their new diagnosis.
Most people with Parkinson’s disease have trouble getting a good night’s sleep due to an inability to fall asleep, stay asleep, or get back to sleep if awoken at night. Causes of this sleep discomfort may be a combination of symptoms of the disease, medications to control those symptoms, a poor sleep environment or bedtime habits, and changes in the brain that can affect mood, thinking, and the sleep-wake cycle. Fortunately, there are things that people and their health care providers can do to help mitigate the problems. Anne-Louise LaFontaine, Director of the McGill University Movement Disorders Clinic in Montreal, Canada, a Parkinson’s Foundation Center of Excellence, discusses the problems and offers solutions.
Medical research is a long and complicated process. Discovering the underlying causes of Parkinson’s Disease (PD), finding new treatments, or searching for a cure involves laboratory work, animal testing, and clinical trials with control subjects and then people with Parkinson’s. One important way to facilitate that research is to involve people affected by PD. The Parkinson’s Advocates in Research program (PAIR) at the Parkinson’s Foundation trains people with PD and caregivers to become involved in the research process, advising researchers on the important topics and helping design successful clinical trials without being overly burdensome to people participating in the trials. In this podcast, Karlin Schroeder, Director of Community Engagement at the Parkinson’s Foundation, and Kevin Kwok, a Research Advocate in the PAIR program, describe the program, its aims, and how to get involved for anyone wishing to become an advocate.
Receiving a diagnosis of Parkinson’s disease, especially when it occurs at an early age, can be seen as disrupting an entire life plan. But it doesn’t have to. Soania Mathur, MD, CCFP, a family physician in Toronto, Canada, was diagnosed with young onset PD at age 27, just when she was starting her own medical career, as well as starting a family. She has developed some views on raising children when a parent or other family member has PD. In this second episode of our two-part Holiday Series: Families and Parkinson’s, she offers advice about how to talk to children about the disease, where to turn for resources, and even how having a parent, grandparent, or other relative with a chronic disease can have positive aspects for a child.
Parenting has its challenges and surprises under the best of circumstances, but when a parent has Parkinson’s disease, it can put added stresses on the family, both for the parents and the children. As parents’ abilities and roles change, children need to come to understand the disease, how it may change their routines, and the potential need to take on additional responsibilities. Today we kick off our first of two episodes in our Holiday Series: Families and Parkinson’s, as we interview Social worker Elaine Book of the Pacific Parkinson’s Research Center and the University of British Columbia Movement Disorders Clinic in Vancouver, BC, a Parkinson’s Foundation Center of Excellence. Elaine shares how she helps families cope with PD by discussing some of the new challenges and demands, what changes may occur in the family, and those things that remain the same. She says there may even be some benefits to the family members when they cope well that would not otherwise accrue under other circumstances.
The benefits of music therapy for Parkinson’s disease have been well established over the years. Rhythm and rhythmic cuing can help with initiation, coordination, and maintenance of movement. Benefits can extend to cognitive functions, communications abilities, and mood. As established professionals, some music therapists have furthered their education as academically trained professionals specifically in working with people with Parkinson’s. Music therapist Dr. Concetta Tomaino, Executive Director and co-founder of the Institute for Music and Neurologic Function in Mount Vernon, New York, discusses who can benefit from music therapy, how it is done, what neuroscience research has found, and where to find information on music therapy. She expands on the multiple ways the therapy can alleviate some of the problems associated with Parkinson’s.
Palliative care is not often thought of in relation to Parkinson’s disease, but as people understand its relevance and benefits, more people with Parkinson’s are adding it to their usual care. Palliation means to ease the burden of the symptoms of a disease, whether that burden is physical, emotional, or spiritual, and that burden can extend beyond the person with the disease to caregivers. Benzi Kluger, MD, MS, director of the University of Colorado’s Neurology and Supportive Care clinics, says that palliative care should begin at the time of diagnosis. He describes the results of a new study on palliative care in Parkinson’s and how it benefited the study participants who received it and viewed it as ‘supportive care’, as well as how palliative care can be incorporated in the day to day routine of people with Parkinson’s.
Besides medication, people with Parkinson’s disease can benefit from many other forms of therapy, including physical, occupational, speech, music and art therapy. One form of therapy they may not be as aware of is dance/movement therapy (DMT). It is provided by certified dance/movement therapists and may be covered by insurance. DMT is based on the idea that changes in the body affect changes in the mind and vice versa. Evidence supports the assertion that the mind, body, and spirit function together and are inseparable. In this episode, Erica Hornthal, a dance therapist and president of Chicago Dance Therapy in Illinois, describes what DMT is, the training of DMT therapists, what goes on during a therapy session, and how people can find a therapist or program.
While Parkinson’s disease (PD) affects all races and ethnicities, not all communities recognize the disease equally. There is a perception in the African American community of PD as a disease attributed to older white men, and thus people may delay getting a diagnosis and help, leading to greater disability. These misperceptions may exist among healthcare professionals as well. Dr. Reversa Joseph, a movement disorders specialist and Adjunct Assistant Professor of Neurology at the Ohio State Wexner Medical Center, says one approach to this problem is outreach and education, particularly when it comes to recognizing early symptoms of the disease. She describes the perceptions in the community and her efforts to raise awareness of PD.