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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I was diagnosed with Parkinson’s disease (PD) in 2019 after my wife noticed a tremor in my left hand. Like many people, I left that initial doctor appointment with more questions than answers. For a period of time, I focused on following medical advice, maintaining my routine and not projecting too far into the future. I believed I was managing Parkinson’s, but in reality, I was largely reacting to it.
Over time, it became clear that a passive approach wasn’t neutral — it had consequences. I noticed gradual changes and realized that waiting for Parkinson’s to dictate next steps limited my options. That marked a shift in how I approached the disease. I decided to take a more active role, both in managing my own health and in contributing to broader efforts aimed at improving outcomes for people with Parkinson’s.
One of my first focus areas was exercise. As I began educating myself, the Parkinson’s Foundation resources on movement were critical. Their recommendation to incorporate four types of exercise — aerobicactivity,strengthtraining,balanceandagilitywork,andflexibility — gave me a clear, practical framework. It became the foundation of my exercise plan. I used it to structure my weekly training, build variety into my workouts and ensure I was addressing multiple aspects of movement.
From that base, I began setting goals and layering in events as a way to stay consistent and accountable.
Over the past few years, that approach led me to complete seven triathlons, eleven Spartan obstacle course races and three races up the Empire State Building stairs. These events weren’t about competition. They provided structure, measurable milestones and a reason to remain engaged over the long term. Training for events helped translate an abstract recommendation (exerciseisimportant) into a concrete, sustainable practice.
With each event, I gained confidence — not only in my physical capacity, but in my ability to influence my own trajectory. That confidence began to shape how I approached other aspects of living with Parkinson’s.
I took a broader focus on wellness. Again, Parkinson’s Foundation information played an important role, particularly around nutrition, sleep, stress management and overall lifestyle balance. None of these elements are cures, but together they help tilt the playing field in my favor. I became more intentional about what I eat, how I recover, how I manage stress and how consistently I support my body and brain. The goal wasn’t perfection; it was building habits that support resilience over time.
Advocacy followed. I became involved in efforts supporting the National Plan to End Parkinson’s Act, meeting with the staff of seven U.S. Senators. Three ultimately committed to supporting the legislation. That experience demonstrated how individual stories, shared clearly and persistently, can influence policy. It also reinforced my belief that advocacy isn’t limited to professionals — it’s accessible to anyone willing to engage.
At the same time, I became increasingly involved in Parkinson’s research. What began as curiosity developed into active participation. I enrolled in studies, learned directly from researchers and gained insight into how essential patient involvement is to scientific progress. Research provided clarity and purpose, and it led me to become both a Parkinson’s Foundation Ambassador and a Research Advocate — roles that enable me to help ensure patient perspectives are reflected in the work shaping future treatments.
Looking back, I realized I hadn’t just been responding to Parkinson’s. I had been building a framework for how to live well with it.
Once that became clear, I felt a responsibility to share what I had learned. It all led me to write a book, LivingParkinson’s, and to create livingparkinsons.comas a place to organize information, resources and lessons learned along the way. My goal was to document practical strategies — grounded in lived experience and supported by science — that together form the core of an actionable plan anyone can adapt. Rather than offering prescriptions or guarantees, the focus is on helping people take ownership of their disease and actively fight back in ways that fit their own circumstances.
This journey I’m on has been about agency. Parkinson’s changes life, but it doesn’t eliminate the ability to influence outcomes. Whether it’s exercise, wellness, education, advocacy or research participation, each step builds momentum.
Parkinson’s has altered my story, but it hasn’t determined its direction. My journey isn’t defined by a diagnosis — it’s defined by how I’ve chosen to respond. If sharing that perspective can help someone else take a more active role in their own journey, then the effort has been well worth it.
Help champion policy changes that make life better for people with Parkinson's. Get involved today.
For years, I lived with a secret. When you are diagnosed with Parkinson’s disease (PD), there is this common, almost overwhelming urge to hide it. Whether it’s the fear of not being accepted or the dread of people looking at you with pity, many of us fight to act “normal.” Trying to mask a diagnosis that has become a huge part of your life is exhausting. It’s hard to be your authentic self when you’re hiding.
I was diagnosed at age 51 in February 2021, right in the heart of the pandemic. At the time, I was working full-time as an educator, leading others through the trials of remote and in-person school. The diagnosis felt like a gut punch during an already impossible season. I kept my diagnosis a secret for over a year — I didn’t even tell my family. I had back surgery during the same time to relieve sciatica, which also caused me to have difficulty walking. This made it easier to hide my symptoms as the sciatic pain masked my rigidity.
Coming out of the pandemic and back into reality, the strain of hiding continued. Eventually, I began to let people in and felt a burden lift. I discovered that people are often far more supportive and less judgmental than I thought. Although I don’t tell everyone I meet that I have PD, I’m becoming more open about my journey, hoping that by sharing my story, I can help someone else live their authentic life a little easier.
Adapting and Moving
While Parkinson’s has affected my left side and made handwriting difficult, I haven't let it stop my voice. I’ve discovered that speech-to-text is a game-changer. It’s more efficient than my old way of writing, allowing my thoughts to flow quickly and freely.
I’ve also learned that movement is medicine. My mobility can feel constrained, so working out is a non-negotiable part of my day. If I skip a workout, I feel the difference. The breakthrough for me was finding a specific Parkinson’s exercise group. Not only has it greatly enhanced my physical ability to function, but it has provided me with a network of "warriors" who are on this same path.
The Power of the Tribe
What keeps me happy and hopeful? Connection. Spending time with family and friends is the best way to stay healthy, but connecting with my "PD tribe" is critical. There is a deep, unspoken understanding that exists between us. Attending the 2025 Moving Day Chicago was an uplifting experience — seeing so many people thriving and living well was the best kind of fuel for my spirit.
When I got a call to participate in the new Parkinson's Foundation PSA, I realized this was a chance to connect with even more people in the PD Tribe and help make others feel less alone.
My Advice: Find Your People
If you are new to this diagnosis, my biggest piece of advice is this: Find your people. Whether it’s an illness or any other life challenge, finding your tribe is essential. The bond you’ll form with those who truly understand your journey will give you a strength you didn't know you had.
Five years into this journey, I’ve learned that staying active — physically, mentally, socially and spiritually — makes all the difference. Don’t hide; reach out. There is so much life to live!
In 2020, during the pandemic, my family and I were spending more time together at home, and one night we watched the movie Awakenings. I was deeply moved by the story, the patients’ struggles and the compassion shown by the doctors. I asked my dad about it, and he explained that the condition shown in the film was Parkinson’s disease (PD).
My dad is a neurologist who specializes in movement disorders, so during that time, as he worked from home, I learned more about this work. I was newly aware of how his patients fought every day against this disease, and how much it affected not only them but their families too. Learning that there was no cure broke my heart, but my dad also told me about the Parkinson’s Foundation and the incredible work they do to bring education, research and hope to those affected by PD.
I was only 10 years old, but I wanted to help. Since I loved music, I decided to create a Facebook fundraiser and perform piano pieces to inspire donations for the Parkinson’s Foundation. Then I thought, why not invite others to join? Soon, friends, family and even professional artists became part of it. That’s how Parkin-SONG was born. To my surprise, our first event in 2020 even featured Gloria Estefan and was mentioned in the local news!
In 2025, I brought Parkin-SONG back, bigger and stronger, through my nonprofit NeuroEduCares, a youth-led organization I founded to promote understanding, compassion and education about neurological diseases like Parkinson’s disease and Alzheimer’s disease.
With an incredible team of young leaders, we organized Parkin-SONG II as both a global virtual concert and a live event at American Heritage School (Palm Beach Campus). The campus came alive with music, karaoke, live performances and even a student dodgeball tournament, creating a day full of unity and purpose. It’s been amazing to see how something that started as one small online idea became a global and school-wide celebration of hope.
I’m proud to support the Parkinson’s Foundation as a Parkinson’s Champion through Parkin-SONG. To me, being a Parkinson’s Champion means taking action to help others. It means using my voice, my music and my efforts to bring comfort, hope and awareness to the Parkinson’s community.
It’s an incredible feeling to know that something that began from the heart can grow and truly make a difference, supporting the Foundation’s mission and giving strength to people with PD and families who face this disease every day.
The Parkinson’s Foundation brings hope where it’s most needed. The Foundation dedicates time, research and resources to improving the lives of people and families affected by this disease. Supporting the Foundation means helping fund education, care programs and research that could one day lead to a cure.
Through my experience as a Parkinson’s Champion, I’ve learned any idea, big or small, can have a large impact. You don’t need to be an adult or an expert to make an impact; you just need passion and a willingness to act. If you truly believe in your cause and put your heart into it, people will join you.
For more information on becoming a Parkinson’s Champion and creating your own fundraiser to support the Parkinson’s Foundation, visit Parkinson.org/DIY.
5 pasos que pueden ayudarle a procesar un diagnóstico de Parkinson
🧠 ¿Qué aprenderá en este artículo?
Este artículo destaca los 5 pasos que se pueden seguir para ayudarle a usted o a un ser querido a procesar un reciente diagnóstico de la enfermedad de Parkinson (EP). Habla acerca de:
Equiparse con recursos e información actualizados para crear objetivos personalizados.
La importancia de encontrar atención especializada y crear su red de la EP.
Formas de mantenerse sano física y mentalmente.
Recursos principales para las personas a las que se les acaba de diagnosticar la EP.
Nada puede prepararlo para escuchar las palabras "tiene Parkinson". Desde la confusión hasta el alivio, lo que sienta después de que lo hayan diagnosticado a usted o a un ser querido es completamente natural.
En este artículo, describimos cinco pasos que le ayudarán a procesar un nuevo diagnóstico de la enfermedad de Parkinson (EP), incluyendo Historias de la EP de personas que cuentan su propio encuentro con la noticia que les cambió la vida.
1. Determine sus objetivos
Planificar cuando hay un nuevo diagnóstico médico puede resultar abrumador si no se sabe dónde encontrar recursos y apoyo. Esto es especialmente cierto si antes no estaba familiarizado con el Parkinson y sus opciones de atención. Armarse de información actualizada puede ayudarle a establecer objetivos a corto y largo plazo para navegar en su recorrido por la EP.
"Cuando me diagnosticaron Parkinson... mi respuesta fue hacer un curso intensivo para aprender todo lo que pudiera acerca de esta enfermedad 'progresiva' y ver qué medidas podía tomar.
Mi objetivo es ser lo más activo posible física y mentalmente. El diagnóstico también me ha hecho reflexionar más acerca de la vida. Aunque no estoy seguro de lo que me espera en el futuro, agradezco haber encontrado un ‘poder a través de la debilidad’. Gracias a esta experiencia, tengo una nueva perspectiva y esperanza en el futuro".
Armado con la información sobre la EP, estará listo para crear hábitos saludables basados en lo que tiene más significado para usted. Lea más acerca de cómo fijarse objetivos específicos y realistas mediante la dieta y la nutrición e inspírese con nuestros videos de fitness adaptados a la EP que presentan un entrenamiento en casa diferente cada mes, incluyendo ejercicios de equilibrio y coordinación para alcanzar sus objetivos de condición física.
2. Busque un experto
Buscar el asesoramiento de un experto en la EP a la hora de procesar un nuevo diagnóstico tiene muchas ventajas. Recomendamos recibir atención de un especialista en trastornos del movimiento o de un neurólogo que haya completado una formación en el tratamiento de la enfermedad de Parkinson. Sin embargo, tal vez no encuentre estos especialistas, dependiendo de dónde viva.
"El neurólogo me explicó que el Parkinson es un diagnóstico clínico y que yo tenía varios de los síntomas motores (temblor, bradicinesia y rigidez muscular). El neurólogo también me mandó hacer algunas pruebas diagnósticas incluyendo análisis de sangre, una resonancia magnética cerebral y un DaT scan.
Unos meses más tarde, busqué una segunda opinión sobre mi diagnóstico y vi a un especialista en trastornos del movimiento en el Rush University Medical Center, un Centro de Excelencia de la Parkinson's Foundation. Se confirmó: efectivamente, tenía Parkinson".
Encontrar un especialista no tiene por qué ser una tarea desalentadora. Estas son algunas de las maneras en las que puede encontrar a un especialista en la EP:
Pida una recomendación a su médico de atención primaria
Póngase en contacto con su compañía de seguros para obtener una lista de neurólogos o especialistas en trastornos del movimiento de su red
Pida recomendaciones a otras personas que viven con Parkinson
3. Encuentre a alguien con quien hablar y crear su red de apoyo
Puede ser difícil hablar del Parkinson. Expresar sus sentimientos e inquietudes es un paso importante para procesar un diagnóstico de la EP. Además, hablar con un trabajador social tiene muchas ventajas para ayudar a aliviar su ansiedad y crear un plan.
"Con la ayuda de mi trabajadora social, superé la incertidumbre creando planes a corto y largo plazo para mi nueva vida con Parkinson. Me puso en contacto con recursos relevantes para mi estilo de vida y mis síntomas y me animó a prepararme para lo peor pero esperar lo mejor. Para mí, seguiré haciendo todo lo que quiero hacer de la forma que quiero hacerlo, hasta que el Parkinson me quite esa capacidad".
Recomendamos unirse a PD Conversations, un lugar donde hacer preguntas, conectar con otras personas que viven con Parkinson y formar parte de una red de apoyo. Es una gran solución para quienes aún no están listos para compartir públicamente su diagnóstico. También puede seguirnos en redes sociales para mantenerse conectado.
4. Cree hábitos saludables
A medida que procese el diagnóstico, puede ser útil fijarse objetivos personales para mantenerse sano mental y físicamente. Conozca a Frank a continuación y aprenda de su experiencia personal en la creación de hábitos saludables tras un diagnóstico de la EP de inicio temprano.
"Un momento crucial fue cuando me puse en contacto con un especialista en trastornos del movimiento. Esta colaboración cambió mi percepción de cómo manejar el Parkinson. Juntos, creamos un enfoque holístico para enfrentar mis síntomas, estableciendo un plan que giraba en torno al ejercicio, la dieta y el manejo del estrés. Conectamos de una manera profunda que cambió mi perspectiva y me ayudó a aprender nuevas técnicas para afrontar la EP.
Impulsado por la positividad y la visualización, imaginé una vida libre de obstáculos para la movilidad, impulsándome hacia una mayor actividad y menos miedo. Este recorrido de abrazar el Parkinson se convirtió en una lección para entender mi cuerpo y sus señales".
Para aprender más acerca de cómo crear hábitos saludables, explore nuestros webinars en los que participan expertos en la EP, cuyo objetivo es educar y responder a sus preguntas más apremiantes.
5. Manténgase activo
Vivir bien con la EP es posible. Un diagnóstico y recibir una atención adaptada a la EP pueden ayudarle a sentirse motivado y listo para aprender a vivir con la EP a su manera. Ya sea que esté listo para establecer una nueva rutina de ejercicios, priorizar la nutrición o involucrarse como voluntario o promotor de la investigación, podemos ayudarle a empezar.
"Soy entrenadora de fuerza y bienestar desde hace más de 40 años. A medida que mi capacidad para hacer deporte empezó a disminuir, me pareció gratificante dedicar más esfuerzo a entrenar a mis atletas. Ya han pasado un par de años y estoy disfrutando de verdad poniendo mi esfuerzo en entrenar a clientes.
La Parkinson’s Foundation me ha ayudado con recursos e información, webinars, artículos de blog y podcasts. El material y la información han sido invaluables. Mi consejo y mi recomendación para cualquier persona con la EP es que no se rinda y siga adelante.”
Encuentre su comunidad de Parkinson y clases locales de bienestar y ejercicio adaptadas a la EP visitando el sitio web de su Chapter de la Parkinson’s Foundation más cercano. Ayude a generar más conciencia mediante actividades como eventos de Moving Day, nuestra experiencia de ciclismo interior Parkinson’s Revolution y programas locales para ayudar a garantizar que las personas con Parkinson, sus familias y sus aliados en el cuidado vivan lo mejor posible.
¿Listo para participar? ¡Aprenda acerca del voluntariado con la Parkinson's Foundation o ayude a impulsar la investigación acerca del Parkinson al inscribirse en nuestro estudio PD GENEration!
Recursos principales para recién diagnosticados
Explore estas herramientas diseñadas para cualquier persona a la que se le haya diagnosticado Parkinson recientemente:
Línea de Ayuda: llame al 1-800-4PD-INFO (1-800-473-4636), opción 3 para español o escriba a Helpline@Parkinson.org para obtener respuestas a sus preguntas acerca de la EP y referencias de especialistas y clases locales para la EP.
Encuentre recursos en su zona: encuentre un especialista en la EP y recursos cerca de usted, así como el Chapter más cercano.
Mientras aprende a vivir con el Parkinson, estamos para ayudar y empoderarlo en cada etapa. Cuando esté listo, explore nuestra Guía para recién diagnosticados.
