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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Episode 178: Maintaining Independence When Living Alone with Parkinson’s
Living alone with Parkinson’s disease (PD) presents daily challenges, but it also offers certain benefits, such as the independence to control your own schedule. Whether you choose to live alone, or find that nearby friends and family aren’t as close as you would like, there are resources to support you.
Living alone can also bring physical and emotional hurdles. You may experience feelings of isolation or loneliness, and everyday tasks like cooking and cleaning can become more difficult while juggling PD symptoms. There are strategies that can help you feel more secured and empowered to overcome these challenges. For example, you might consider using a food delivery service on days when preparing meals feels overwhelming, or reaching out to a neighbor for help with shoveling snow. It’s important to prioritize self-care and recognize when it’s time to ask for help.
In this episode, we speak with Susan Englander and Fran Chernowsky, two individuals living alone with Parkinson’s who are also members of the Parkinson’s Foundation PD Solo group. They share their experiences with the initial challenges of receiving a PD diagnosis, the importance of staying open and flexible to new things, and the value of finding a supportive community.
Released: April 22, 2025
Speakers
Susan is an almost retired clinical social worker living in Boston. She was diagnosed with PD 6 years ago at 71 years-old and continues to lead groups for the families of cancer patients. She enjoys any outdoor activity and keeping up with old friends. She volunteers at a non-profit, doing restorative justice work with non-violent offenders. She will try anything chocolate, preferably dark varieties.
Fran Chernowsky is a volunteer member of the Steering Committee of PD Solo, a group of people around the country with Parkinson's who live alone. Although she is 79, Fran still enjoys her work as a freelance paralegal, which she describes as "ghost writing for lawyers". In her free time, she loves to read, play ping pong and games like Mahjong, studies languages, and loves computers and new technology. She also hosts a monthly book club meeting, travels to mystery writers’ conventions around the country, and tries to cook something interesting for dinner. Born and schooled on the East coast, she currently lives in Los Angeles.
Caring for the Mind: 12 Parkinson’s Mental Wellness Resources
At times, living with Parkinson’s disease (PD) can feel overwhelming. Managing symptoms, navigating physical and mental changes and making lifestyle adjustments can all take an emotional toll. As you find your path forward, it’s essential to acknowledge and take steps to care for your mental health.
Up to half of all people with Parkinson's will experience depression at some point, while 40% will experience anxiety. Nearly half of people with PD can also experience apathy, a loss of interest in life. These changes can be related to PD, due to a loss of dopamine and other chemical messengers the body makes to keep the brain healthy.
Whether you live with PD or you are a care partner to someone who does, it can be challenging to know where to begin. Explore our top resources that address mental wellness and PD:
1. Create space for all your emotions, even those of grief and loss.
Grief is a natural part of the Parkinson’s journey, especially following a diagnosis. Holding onto grief impacts your mind and body. Read 6 Questions for Exploring Your Parkinson’s-Related Grief to find healthy ways to honor and process feelings of loss.
Parkinson’s-related mood changes are commonly undertreated. There are screening tools and therapies available. Learn what to watch for and how to discuss treatment options with your doctor.
3. Cultivate a state of calm with Mindfulness Mondays, a series of guided relaxations.
Stress can worsen PD symptoms. Mindfulness, focusing on one thing at a time and blocking out distractions, promotes resiliency and reduces stress. Read Top Takeaways About Complementary Therapies and PD to explore more mind-body wellness practices.
Up to 14% of people receiving dopamine-replacement therapy can develop compulsive behaviors known as impulse control disorders. It is believed people perform these harmful behaviors (such as hypersexuality, hoarding or compulsive gambling) to relieve anxiety and tension.
5. Learn how Parkinson’s disease cognition – the mental skills we use to focus, solve problems, plan, follow instructions and more.
6. Break a sweat with our free, on-demand Fitness Friday workouts.
Exercise is medicine. Regular exercise can ease depression, anxiety and other non-movement symptoms of PD, as well as improve mobility and flexibility. Aim for at least 2.5 hours a week.
Restorative sleep helps repair the brain and body and enhances mental wellness – critical for people with Parkinson’s and care partners. Expert Tips on How to Get Good Sleep with Parkinson's also offers strategies to build a healthy sleep routine.
Gut and brain health are intertwined. A nutrient-rich diet – including colorful fruits and vegetables, beans, whole grains, poultry, nuts, seeds, fatty fish, olive oil and other healthy fats – can offer neuroprotective benefits and boost the number of good bacteria in the body.
10. Get social and connect with your PD community online or in person.
Loneliness can affect physical and mental health. Find your nearest Moving Day, A Walk for Parkinson’s to meet others living with PD or access wellness classes and other resources near you through the Parkinson's Foundation local Chapter network.
11. Don’t fear hard conversations. You are not alone.
People with Parkinson’s are at an increased risk of suicide. If you are struggling with thoughts of despair, opening up to someone you trust is the first step toward getting the help you need. How to Openly Discuss Suicide and Parkinson’s can help you talk about difficult feelings. The National Suicide Prevention Lifeline is available 24 hours a day at 1-800-273-8255.
12. Get inspired. Learn how others are navigating life with Parkinson’s.
My PD Story is a place for where people share how they are raising awareness of PD and overcoming its challenges. Learn what keeps others hopeful and consider sharing your own story.
We’re here for you. Contact our Helpline more information on mental health, referrals to professionals and resources in your area. Call 1-800-4PD-INFO (1-800-473-4636) or email Helpline@Parkinson.org.
Brain Inflammation Linked to Dementia Risk in Parkinson's Disease
Parkinson's disease (PD) is known primarily for its movement-related symptoms, but it can also lead to dementia, a devastating decline in cognitive abilities. Nearly half of people diagnosed with Parkinson’s develop dementia within 10 years of their Parkinson’s diagnosis. Researchers are now looking closer at what happens in the brain early in the disease to understand why some people with Parkinson’s develop dementia while others don't.
A new study, published in Brain, focused on two key factors: brain inflammation (also called neuroinflammation) and the buildup of a protein called tau. Neuroinflammation, an immune response within the brain that is largely protective when working correctly, can release harmful chemicals that can damage or kill neurons when overactive, impairing communication between brain cells essential for cognitive processes. Tau protein, when misfolded and accumulated, forms tangles that disrupt how brain cells transport nutrients, preventing them from functioning properly and eventually leading to cell death.
Both processes can contribute to the progressive loss of brain cells and synaptic connections and may ultimately lead to the cognitive decline characteristic of dementia. However, it was not known to what degree these factors were linked to dementia risk in people with early-stage Parkinson’s.
Study Results
The study enrolled 31 people recently diagnosed with Parkinson’s (the average time since diagnosis was one year) and 19 people of similar ages that did not have Parkinson’s. Using specialized brain scans (PET scans), researchers examined brain inflammation and tau accumulation in each participant. In addition, levels of body-wide markers of inflammation and tau were evaluated through a blood test.
The researchers also evaluated the participants’ potential risk for dementia by assessing visual-motor skills, word recall and results from a genetic test (MAPT genotype) that is linked to dementia. Based on these test results, they divided participants into two groups — those at higher risk or lower risk for dementia.
The study found that people at higher risk for dementia showed significantly more brain inflammation in several brain regions compared to both those at lower risk and people without PD. This inflammation was also linked to poorer performance on a cognitive test (ACE-III). Additionally, the overall level of neuroinflammation correlated with the amount of body-wide markers of inflammation seen in the blood test. This suggests that a high level of inflammatory markers detected in the blood may be a sign of increased neuroinflammation.
Interestingly, while tau protein buildup was observed, it didn't seem to directly relate to cognitive decline. However, the study did find that more brain inflammation was linked to tau accumulation, particularly in the high-risk group.
People with Parkinson's scored lower on a cognitive test (ACE-III) compared to those without Parkinson's. Even within the Parkinson's group, those at higher risk for dementia scored lower on the same test than those at lower risk. Interestingly, the group at higher dementia risk had been diagnosed with Parkinson's for a slightly shorter time but showed more severe Parkinson's symptoms. There was no link between higher risk of dementia and age, gender, or the amount of Parkinson's medication someone took.
Overall, these findings suggest that brain inflammation is evident in the early stages of Parkinson's and may be a key factor in determining who develops dementia. On the other hand, accumulation of tau protein in early-stage Parkinson’s does not appear to correlate with dementia risk.
Highlights
The study enrolled 31 people who were recently diagnosed with Parkinson’s and 19 people of similar ages that did not have Parkinson’s. People with Parkinson’s were grouped into those with high- and low-risk for dementia.
People with Parkinson's scored lower on a cognitive test (ACE-III) compared to those without Parkinson's.
Using specialized brain scans (PET scans) and markers, researchers examined whether participants showed signs of brain inflammation and tau protein accumulation
People at higher risk for dementia showed significantly more brain inflammation in several brain regions compared to those at lower risk and people without PD.
Brain inflammation was also linked to poorer performance on a cognitive test (ACE-III).
What does this mean?
This study indicates that brain inflammation may be an early contributor to dementia in Parkinson’s disease. As a result, neuroinflammation could potentially be a useful biomarker to identify people with Parkinson’s who are at risk for dementia. This opens the door to potential treatments that target brain inflammation, possibly preventing or slowing the progression of dementia in people with Parkinson's disease. There are several anti-inflammatory treatments already licensed to treat other conditions, which could potentially be repurposed to help treat PD-related dementia. However, it could take many years before a treatment strategy to alleviate Parkinson’s-linked dementia becomes widely available.
What do these findings mean to the people with PD right now?
This study further solidifies the link between the brain inflammation people with PD experience and the risk for dementia. Parkinson’s disease dementia symptoms include potential thinking, memory and behavior changes — these symptoms can be wide-ranging. If you notice symptoms, talk to your movement disorders specialist about dementia concerns. While there is no way to stop the disease’s progression, a doctor can help manage the symptoms.
The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Learn more about the topics in this article through our below resources, or by calling our free Helpline at 1-800-4PD-INFO (1-800-473-4636) for answers to your questions.
Mental health symptoms are common in Parkinson’s disease (PD). Learn the causes, signs and what to do. You are not alone.
Up to 50% of people with PD experience depression or anxiety.
Understand the Causes
The same brain chemicals that affect movement in PD can also impact emotions and behavior. Stress, isolation, life’s ups and downs and coping with PD also play a role.
Know the Signs
Feeling sad, anxious or unmotivated from time to time is normal. If these feelings last or interfere with daily life, reach out for help.
Depression, anxiety and apathy, if not managed, can worsen movement symptoms and impact quality of life.
Depression: Ongoing sadness, low energy, loss of pleasure, hopelessness.
Anxiety: Excessive worry, fear or stress, restlessness, irritability.
Apathy: Lack of motivation, disinterest in activities once enjoyed.
Call or text 988 if you’re in crisis.
What You Can Do
Talk to your doctor
Mental wellness care often includes lifestyle strategies, talk therapy and other forms of support. Sometimes, medications are needed too.
Seek support
Reach out to friends, family, counselors, support groups and other resources. For guidance, contact our Helpline at 1-800-4PD-INFO (1-800-473-4636).
Keep moving
Even just 30 minutes of moderate activity, like walking or yoga, boosts brain chemicals that help reduce stress, anxiety and depression.
Stay engaged
Schedule time to connect with others and look for ways to get involved. Even when you don’t feel like it, staying active can improve your mood over time.
