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.
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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.
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3 Essential Resources for 3 Different Kinds of Care Partners
November is National Family Caregivers Month, a time to honor care partners. This year, the Parkinson’s Foundation is highlighting the diverse experiences of caregiving with our theme, “Real Care. Anywhere.”
Care partners are essential members of the care teamfor people with Parkinson’s disease (PD). However, the way they provide care and support can look different — from sharing a home with someone who has PD to providing care from afar to managing PD alone — caregiving is not one-size-fits-all. We are proud to provide support for all types of care partners. Here are essential resources for three different kinds of care partners:
Everyday Care Partner
An everyday care partner lives with someone who has PD and offers daily support. This can include setting up and attending appointments, helping with medications and navigating day-to-day challenges.
Whether you have been a care partner for a while or are just starting to navigate Parkinson’s disease, this guide is designed for you. It includes practical tips about things like building a support network and planning for the future, along with insights from other care partners and activities and worksheets to support your journey.
It can be hard to find balance as a care partner, but it is important to remember to care for yourself as well. These tips can help you prevent caregiver burnout, manage stress and build a support system.
3. Find a Parkinson’s support group near you.
In addition to providing a comfortable environment for asking questions and sharing experiences, support groups can lead to lasting friendships. Some groups are for care partners only, while others include care partners and people with PD. Contact our Helpline at 1-800-4PD-INFO (1-800-473-4636) to find one near you.
Caring From Afar
Some care partners live away from their loved onesand offer support from a distance. This type of caregiving can include managing logistics for everyday care, finding ways to coordinate tasks virtually or providing emotional support through regular phone calls and visits.
You will be better able to provide support if you have a basic understanding of PD. Our PD Library is filled with resources to help you learn more about Parkinson’s, being a care partner and managing daily activities and long-term plans.
If you are the primary care partner and live away from your loved one, consider hiring someone to help you manage day-to-day care needs. From utilizing your network to finding in-home care providers, know that there are many options available to help you assist your loved one from afar.
Connect with other people with PD and care partners in each of your areas, learn about events and learn more about living well with Parkinson’s together, from a distance.
Solo Care Partner
Many with Parkinson’s care for themselves. This often-overlooked group acts as their own care partner, managing schedules, medications and wellness routines on their own.
The PD Solo Network is a virtual network for people with Parkinson’s disease who live alone, by choice or circumstance. This community meets monthly to share ideas, review resources and build relationships.
Ensure your home is safe and easily accessible. This checklist will help you determine if anything about your home or lifestyle should be adapted to help you live well with Parkinson’s.
Call or emailthe Parkinson's Foundation Helpline 1-800-4PD-INFO (1-800-473-4636) for answers to your Parkinson’s disease (PD) questions. Our Helpline is answered by PD information specialists who are skilled in providing the right information at the right time.
Real Care Starts Here
No matter what caregiving looks like for you, the Parkinson’s Foundation is here to help.
Before my grandfather (Papa) was diagnosed with Parkinson's disease (PD) several years ago, my family noticed he was losing his footing and falling quite often. As an active person, it was very unlike him. After his diagnosis, he was still mobile. He needed to be supervised by me, a teenager at the time, but he could walk short distances and use the restroom. But progressively, it became so much worse.
Papa was one of the most prideful men I ever met, and his presence always stood strong. He commanded rooms. In a car, he was always the one behind the driver's seat. He threw the biggest parties! He had complete control of every aspect of his life.
But now he can now only speak few words at a time and needs assistance to walk. He has depression — a PD symptom experienced by 50% of people with Parkinson’s — because he is socially isolated from the people he loves, and cannot communicate in depth with his family.
But I've also seen the moments of love and humbleness. He loves to have his family around him in this time of need, to hug him, to do things for him or to give him gifts. My little sister makes arts and crafts for him.
He greatly appreciates every moment he has with us, his family. Just sitting down with him to watch a show means so much to him.
Parkinson’s changed Papa forever. That’s why I help my uncle, comedian Paul Farahvar, with his annual Stand Up For Parkinsons comedy night fundraiser. This unique event supports the Parkinson’s Foundation and directly helps people with Parkinson’s in our area as proceeds support the Parkinson’s Foundation Midwest Chapter. Everyone who comes out to support this cause helps honor Papa, and I’m proud to be a part of that.
Looking for ways to help your local PD community? Learn more on ourHow You Can Helppage.
It started with something small: I found it difficult to button my shirt with my right hand.
In 2022, that small sign became a life-changing diagnosis: Parkinson’s disease. With no family history and a lifelong focus on health, the news was a shock.
I tackled it head-on with exercise, therapy, a healthier diet and a support group for those newly diagnosed. My wife stood beside me every step of the way, connecting with care partner groups and reminding me we were in this together.
Then, in the spring of 2024, my world collapsed. She died suddenly, just three months before the birth of our first grandchild. For months, I let grief take over—poor diet, little sleep, no exercise. But slowly, I began to climb back, knowing she’d want me to keep living, not just surviving.
Now, I share my journey through my blog—writing about Parkinson’s, grief and hope. My grandson is one year old, and when I hold him, I see her in his eyes.
I’m grateful for my Parkinson’s community and proud to serve as a Parkinson's Foundation Ambassador speaking at local events, fundraising and supporting others facing the same road. Parkinson’s is part of my life, but it doesn’t define me.
I have someone who I get to share my life with, as well as friends and family who lift me up. My disease is manageable. And every day, I try to live the kind of life my wife believed I could—one filled with purpose, gratitude, and love.
Reclaiming Restful Sleep by Unraveling How Parkinson’s Changes the Brain
Along with the typical movement-related symptoms, many people with Parkinson’s disease (PD) also experience other non-movement health issues. These non-movement symptoms can be quite debilitating and sometimes more difficult to notice by care partners.
One common non-movement PD symptom is difficulty sleeping, often in the form of waking up frequently throughout the night. Pamela Marcott, MD, PhD, a recipient of a Parkinson’s Foundation Postdoctoral Fellowship, is casting a spotlight on the sleep-associated circuits of the brain to understand how exactly PD impacts sleep patterns. By uncovering the mechanisms behind PD-related sleep problems, she hopes to help advance new therapies for such disturbances.
While much of the neuroscience of sleep is still a mystery, researchers do know that staying asleep through the night requires a highly calibrated balance of different signals in the brain. These sleep signals are relayed through brain cells called neurons and can vary in frequency and intensity, depending on their purpose. If these signals become altered and imbalanced, sleep fragmentation occurs with "frequent changes between different sleep and wake states, leading to less consolidated and restful sleep,” said Dr. Marcott.
Under the mentorship of Alexandra Nelson, MD, PhD, and Ying-Hui Fu, PhD, at the University of California, San Francisco, a Parkinson’s Foundation Center of Excellence, Dr. Marcott is investigating how PD changes the behavior of neurons in a specific sleep-regulating region of the brain called the pedunculopontine nucleus (PPN). PPN neurons act like telephone operators, relaying important signals across the brain. Using mice with and without PD-like symptoms, she will measure how the disease affects the ability of PPN neurons to transmit their important sleep signals.
“Results of this study will improve our understanding of the circuit mechanisms that regulate sleep disturbances in PD, which will inform future therapeutic treatments.” - Dr. Marcott
After learning more about how PD changes the sleep-related neurons’ signaling ability, Dr. Marcott will then monitor the brains of the mice as they sleep. She will keep a close eye on how the PPN neurons activate during sleep phase transitions, as she believes PD causes these neurons to be overactive and lead to fragmented sleep. Observing in real time how PD alters sleep regulation in the brain will provide a strong foundation for understanding how to treat this symptom and give restful nights back to people with PD.
“As a physician scientist in this space I am committed to making meaningful discoveries in the laboratory that will benefit my patients, and I am excited to have the opportunity to start this phase of my career with the support of the Parkinson's Foundation,” said Dr. Marcott.