Stay ConnectedHow 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.
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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)/corticobasal syndrome (CBS), and multiple system atrophy (MSA) are initially misdiagnosed with Parkinson’s disease (PD) due to similarities in early symptoms as well as lack of awareness of these rare, neurodegenerative diseases among many healthcare professionals and the general public.
This is the first of three podcast episodes within our atypical parkinsonism podcast series, organized in partnership with CurePSP and designed to address the overview, treatment and care of PSP, CBD and MSA.
In this first episode of the series, Dr. Alex Pantelyat, Associate Professor of Neurology at Johns Hopkins University School of Medicine shares an overview of atypical parkinsonism, overlaps and differences with Parkinson's disease, the red flags and how PSP, CBD and MSA are diagnosed.
Dr. Pantelyat has disclosed that he is a Scientific Advisory Board Consultant for MedRhythms, Inc. and a consultant for both Ferrer Internacional, S.A. and SciNeuro Pharmaceuticals.
Podcast host, Dan Keller, has disclosed that he has no relevant financial disclosures.
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 for controlling PD 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 the hospital’s.
Rose Lang’s husband, John, fell and broke his hip, resulting in his transport to a local hospital and several hours in the emergency department. Fortunately, he brought some of his pills with him and took them while waiting to be admitted to a room 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 a Parkinson’s Foundation Ambassador, 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.
The Parkinson’s Foundation Hospital Safety Guide is the updated and improved version of the former Aware in Care Hospital Safety kit, which you’ll hear referenced in this episode. The Guide has new, vital information, based on research and feedback, prioritizing what is most important — staying safe and empowered when hospitalized with Parkinson’s.
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.
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