Episodio 23: Crear un plan de autocuidado y por qué es importante para los cuidadores
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.
Publicado: 15 de noviembre de 2022
Adriana González, LCSW, es graduada de la San Diego State University, con una maestría en trabajo social y tiene licencia en el estado de California. Como trabajadora social en el Centro para el Parkinson y Otros Trastornos del Movimiento de la University of California, San Diego, Adriana trabaja en colaboración con su equipo para satisfacer las necesidades cambiantes de las personas que viven con la enfermedad de Parkinson y su familia.
Agradecemos al patrocinador de este episodio de podcast:
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.”
Released: September 6, 2022
Julia Wood, MOT, OTR/L is an occupational therapist specializing in assessment and treatment of people with Parkinson’s disease. Julia is currently the director of Professional & Community Education at the Lewy Body Dementia Association (LBDA). Julia has served as faculty for the Parkinson’s Foundation Team Training for Parkinson program since 2016 and served on the Parkinson’s Foundation Rehabilitation Task Force in 2021. She co-authored the first American Occupational Therapy Association Practice Guideline for Adults with Parkinson’s Disease in 2022 and serves on the Comprehensive Care Subcommittee for the World Parkinson’s Congress (WPC) in Barcelona, Spain in 2023.
Rebecca (Becca) Miller, PhD, is a licensed clinical psychologist and Associate Professor at the Yale School of Medicine, Department of Psychiatry, New Haven CT, USA. She received her MA and PhD in Clinical Psychology from Long Island University, Brooklyn, and her BA from Barnard College. She serves as Director of Peer Support at Connecticut Mental Health Center in New Haven, using her lived experience with mental illness to inform her work. Her publications and other scholarship have focused on peer support for persons diagnosed with serious mental illnesses, person-centered and recovery-oriented approaches, alternative experiential approaches to clinical training programs, and deprescribing in psychiatry. She recently co-authored the book, Deprescribing in Psychiatry, published by Oxford University Press. Becca was diagnosed with Young Onset Parkinson’s Disease, at age 39 when her daughter was 9 months old, and after living with symptoms undiagnosed for 10 years prior. She has served as a delegate and spoken on YOPD and parenting at the World Parkinson Congress in Portland, OR and Kyoto, Japan. She finds it delightfully ironic that she discovered snails were her totem animal 20 years before diagnosis with YOPD. She currently lives in New Haven with her now 9-year-old daughter.
Episode 92: Clinical Issues Behind Impulse Control Disorders
Impulse control disorders in Parkinson’s disease (PD) are more common than originally thought, affecting an estimated one in six people with PD taking dopamine agonists. They may appear as unhealthy or compulsive levels of shopping, gambling, eating, sexual activity, or involvement in hobbies. They appear to be related to dopamine replacement therapy, so finding the right level of medications can be a challenge to manage symptoms without incurring impulsivity issues. It is important that people with PD, their care partners, and health care professionals be aware of and recognize these activities so that they can be addressed promptly to avoid, for example, social, emotional, economic, and health issues that may result from these disorders. The harm often goes beyond the person with the disorder and can affect family, friends, and others around them. Once recognized, impulse control disorders can often be managed or eliminated by working with a doctor to change dopamine agonist medications or dosage, or in some cases, even going on to deep brain stimulation.
Dr. Mark Groves, Consultant Psychiatrist at the Parkinson’s Foundation’s Center of Excellence at Mount Sinai Beth Israel in New York City, discusses the problem of impulse control disorders, what forms they may take, approaches to recognizing them, and the need to acknowledge them as a biologic condition and not a character or personality flaw.
Released: November 3, 2020
Dr. Mark Groves is psychiatrist specializing in the psychiatric management of Parkinson’s disease and other movement disorders and is an Assistant Clinical Professor of Psychiatry and Neurology at the Icahn School of Medicine at Mount Sinai in New York City. For the last 17 years, he has been the consulting psychiatrist to the Movement Disorder Division and Parkinson’s Foundation Center of Excellence at Mount Sinai Beth Israel. Dr. Groves’s clinical interest in Parkinson’s disease was initially sparked in his early college years when he had 2 Parkinson’s Disease Foundation Summer research fellowships and worked with clinical researchers and patients at Columbia University.
A graduate of Brown University, Dr. Groves attended medical school at the University of California, San Francisco and completed his residency in Psychiatry and a fellowship in Consultation-Liaison Psychiatry at Columbia University/New York State Psychiatric Institute. He is board certified in Psychiatry, with subspecialty certifications in Psychosomatic Medicine and Neuropsychiatry/Behavioral Neurology.
Dr. Groves has published a number of papers and book chapters on Psychological Reactions to Illness, and clinical aspects of Parkinson’s disease and Huntington’s disease, but his primary focus is in the direct clinical work with patients, caregivers and multidisciplinary colleagues treating the psychological and non-motor symptoms of patients with movement disorders with psychotherapy, medications and other treatments. He continues to learn from the privileged opportunity of immersing himself in the inner experiences of his patients and partnering in care with other disciplines.
Episode 139: Community Care Programs for Care Partners
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.
Released: November 1, 2022
Cara Iyengar, MSW, LISW, is the social worker and Center of Excellence Coordinator for the University of Iowa Health Care Parkinson's Foundation Center of Excellence. She is a graduate of the University of Iowa and the University of Northern Iowa and has over a decade of social work experience. Cara has worked in a variety of healthcare and community settings but has mostly focused on working with older adults and caregivers. In her current role she assists patients and families navigate their Parkinson's and related diagnoses and helps them access resources and information.
Cara is the current co-champion for palliative care at her COE and also serves on the COE Clinician Advisory Council on Palliative Care. Since working in her current role, Cara has been involved with a variety of projects with the Parkinson's Foundation, including Patients Advisors in Research (PAIR), Hispanic Outreach Leadership Program, and has served a peer reviewer for the Parkinson's Foundation Community Grants.
Episode 141: How Social Workers Can Help Ease Anxiety about the Unknown
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.
Released: December 13, 2022
Lance M. Wilson, MSS, LSW, C-SWHC, ASW-G is a Neuroscience Medical Social Worker who works with patients, families, and care partners impacted by the diagnoses of movement disorders, such as Parkinson's Disease.
Lance is a Licensed Social Worker (LSW) in the State of Pennsylvania. Lance holds a C-SWHC (Certified Social Worker in Health Care) and ASW-G (Advanced Social Worker in Gerontology) both specialty certifications from the National Association of Social Workers.
Lance holds a bachelor’s degree in science (BS) in Human Services from Lincoln University of PA and a master’s degree in Social Service (MSS) in Clinical Social Work from Bryn Mawr College’s Graduate School of Social Work and Social Research. Currently, Lance is pursuing his clinical supervision for his licensure in clinical social work (LCSW) and is currently a PhD student of Social Work at Widener University’s College of Health & Human Services.
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.
Lanzado: 18 de octubre de 2022
Elsa Baena, PhD, es neuropsicóloga en el departamento de neuropsicología clínica y en la unidad de neurorrehabilitación intrahospitalaria del Barrow Neurological Institute.
La experiencia de la Dra. Baena incluye la evaluación neuropsicológica y rehabilitación de individuos con una variedad de diagnósticos neurológicos, incluyendo condiciones neurodegenerativas, lesiones cerebrales adquiridas, enfermedades cardiovasculares y tumores cerebrales. También realiza evaluaciones pre y postquirúrgicas para la estimulación cerebral profunda (ECP o DBS, por sus siglas en inglés) y la cirugía de epilepsia. Domina el inglés y el español y es miembro de la Hispanic Neuropsychological Society, la National Latinx Psychological Association, la American Academy of Clinical Neuropsychology, la International Neuropsychological Society y la National Academy of Neuropsychology.
8 Practical Ways to Work on Your Mental Health with Parkinson’s
For people with Parkinson’s disease (PD) and care partners, dedicating time to maintaining mental health can feel like its own battle. From the mental exhaustion leading up to a Parkinson’s diagnosis to what can feel like ever-changing symptoms as PD progresses, it’s easy for mental health to not be a priority.
Below we explore eight practical ways to work on your mental health. Most of these can be applied to people with PD and care partners, as both are constantly navigating the complexities of mental health symptoms alongside the physical ones.
1. Get to know the science behind the psychological impact of Parkinson's.
Depression, anxiety and apathy are all common Parkinson’s symptoms. In fact, up to 50% of people with Parkinson’s will experience some form of depression. Our research shows that together, depression and anxiety have the greatest impact on the health of people with PD, even more than the movement challenges.
The science behind mood symptoms is that Parkinson’s directly impacts the production of dopamine in the brain. Dopamine plays an essential role in helping the body move smoothly and the brain process emotions.
What can you do? Get to know non-movement symptoms. Learn the signs of depression. Bring up any mood-related symptoms to your Parkinson’s doctor. Together, you can find treatment options that work for you.
Research shows that exercise and physical activity can not only maintain and improve mobility, flexibility and balance but also ease non-movement PD symptoms. Exercise releases chemicals in the brain such as neurotransmitters and endorphins that make us feel good. It reduces immune system chemicals that can worsen depression, and it increases body temperature, which may have a calming effect.
PD-tailored exercises classes, from non-contact boxing to indoor cycling, are excellent forms of exercise and have the bonus of helping build your PD support system.
Increasing physical activity alone was shown in some studies to improve mood. Walking, gardening, housework, washing the car — any activity that gets you moving can help improve your mood. Even adding small amounts of physical activity throughout your day can be useful.
Resource that can help: Try an on-demand exercise class through our Fitness Friday videos, or call our Helpline at 1-800-4PD-INFO (1-800-473-4636) to find a PD-tailored exercise class near you.
3. Try complementary therapies.
Explore holistic approaches that can support mental wellness in addition to your treatment plan. About 40% of people with Parkinson’s use some type of complementary therapy as part of their regular treatment routine.
Eating a whole food, plant-based diet, often called the Mediterranean diet, can help you live well with PD. Eat what you need to be happy — but also eat more of the food that is good for your health.
If you have Parkinson’s, every healthy lifestyle change can help. While it can be challenging to eat better, most people make minor diet changes gradually that become major changes over time. Always consult your physician before making major changes.
5. Attend an in-person event and try a new resource.
For everyone, finding the tools that help you cope with stress and anxiety can be a lifelong endeavor. Explore Parkinson’s Foundation resources that can help you get the support you need.
How can I support my loved one with Parkinson’s through mental health changes? How can I support my own mental health? As a caregiver, you have a dual role — taking care of the person with Parkinson’s and taking care of yourself. These roles are equally important! A strong personal support network will help you have an outlet for your emotions and be able to take time off. Call our Helpline at 1-800-4PD-INFO (1-800-473-4636) to find a local caregiver support group.
Regularly check in with yourself. Seek help professionally or from a trusted friend as you need it. Remember to take breaks — utilize people in your life, or external resources, to allow you respite from caregiving.
7. For everyone: Build your mental health support team.
Recognizing your individual emotional needs and building a strong support network that includes mental health professionals is part of a comprehensive plan to navigate PD.
Surround yourself with people who will listen, uplift and encourage you when you need them. Look for support among your friends, family and community. Take the time to find the right therapist. It may be difficult to find one familiar with PD, but those who are specialized in chronic illness, grief, anxiety and depression can often address common feelings and experiences of living with a PD diagnosis.
8. For everyone: Call our Helpline for personalized resources and tools.
Our Helpline is here to answer your Parkinson’s questions. Speak to our Helpline specialists to find resources that work best for you or your loved one with Parkinson’s. Regarding mental health, our Helpline can provide referrals to:
Healthcare professionals.
Community resources including exercise classes and local support groups.
Mental health resources.
Resource that can help: Call 1-800-4PD-INFO (1-800-473-4636) or emailHelpline@Parkinson.org.
From Passion to Action: 4 Volunteers Making a Difference
Every day at we are grateful for the wonderful volunteers, known as Parkinson’s Foundation Ambassadors, who help make a difference in the lives of people with Parkinson’s disease (PD).
National Volunteer Week is April 17 to 23, and we want to celebrate and thank all the hard-working volunteers across the globe who spread awareness and improve their PD communities.
There are many ways to get involved and start volunteering, from Moving Day to joining our People with Parkinson’s Advisory Council. Finding the opportunity that fits your abilities and passion is key. Below are four volunteers who did just that, and who are excited to share their stories with you in the hopes that you might also find the volunteer role that works for you!
Rebecca
Volunteer, Brother is living with Parkinson’s
Selfishness is normally considered a negative characteristic, but in this case, I’m proud to be a selfish volunteer for the Parkinson’s Foundation. Luckily, everything I do for the Foundation helps Greg, and vicariously helps others too! I think that’s pretty positive.
Parkinson’s Research Advocates, Mike is Living with Parkinson’s and Angela is his care partner
Back in the day, it was uncommon for older people, especially African Americans, to seek medical attention for physical and mental needs. Now, as a Research Advocate, I can ask questions and help raise awareness for PD. I use this role to spread information about the importance of clinical research and genetic testing.
There are many volunteer roles in the Parkinson’s Foundation and my interest settled on giving presentations in the community. First, I needed to complete the Ambassador training which was very helpful and increased my PD knowledge. My motivation to pass the training quickly became my reality and I became a Parkinson’s Foundation Ambassador for the Georgia Chapter.
Whether you are interested in becoming a Parkinson’s Foundation Ambassador like Darrell, a research advocate like Mike & Angela, or speaking to people in your community like Rebecca, we want to hear from you! Get to know more of our volunteers through this special volunteer edition podcast episode.
Complete our volunteer interest form to get started. You can also chat with the volunteer engagement team to help us educate others about PD and connect them to life-saving resources.
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.
Released: January 9, 2024
President, Keller Broadcasting, Inc.
Dan holds a PhD in immunology and microbiology and has also done research in hematology and neuroendocrinology. Combining this background with print and broadcast journalism training, he reports from major medical conferences worldwide as well as produces and hosts video segments and podcast series for clinicians, researchers, and patients and care givers. He has produced radio series and hosted call-in science shows for the public airing nationwide and has earned both print and broadcast awards.
Expert Briefing: Hallucinations and Delusions in Parkinson's
November 8, 2023
Psychosis can be a frightening word. In Parkinson’s disease, the medical definition of psychosis usually starts with mild symptoms that can have a big impact on quality of life. Psychosis can vary from severe confusion to seeing things that aren’t there, to believing things that are not true. Find out what causes these symptoms, how people with Parkinson’s might experience them and management strategies.
