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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5 pasos que pueden ayudarle a procesar un diagnóstico de Parkinson
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.
If I were to summarize living with Parkinson’s disease (PD) today it would read something like the following LinkedIn profile:
Parkinson’s scholar-advocate bridging research, public education, and creative practice — publishing peer-reviewed work, convening expert speakers, presenter at domestic and international conferences, and facilitator of poetry and intentional writing for people living with Parkinson’s.
It took a few years to get to the point where I could write a summary of a productive life living with Parkinson’s. Like most people, I met my diagnosis of Parkinson’s disease with disbelief and fear. Disbelief of how this could be happening to me during the height of my career and fear of what the future held.
After my initial diagnosis in 2013, I sought second opinion(s). A primary care physician and a highly esteemed EMG specialist (someone who performs and interprets Electromyography (EMG) tests) assured me I did not have Parkinson’s. The EMG specialist, in particular, went to great lengths to argue that it was common for patients who wore a boot for three months or more after extensive foot surgery (which I had in October 2011) to develop a spasm in their maximus gluteus muscle of the affected leg.
A sports medicine doctor prescribed propranolol which calmed the tremor tremendously. Generally speaking, I lived my life as I always had, busy with my career, friends and traveling with my teenage children. Parkinson’s impacted my life but in a limited fashion.
In 2015, I decided it was time to settle the score and so I made an appointment at Mayo Clinic in Rochester, MN. Meeting with the neurologist was another one of those moments where the truth hits one right in the gut and there was no getting around it. Mayo confirmed that I indeed had idiopathic Parkinson’s.
Over time and with extensive research, I felt that idiopathic was not an appropriate descriptor for my brand of Parkinson’s. It did not take a lot of researching to arrive at likely causes of my disease. Varied and occurring over at least three decades, the cause of my Parkinson’s, in my opinion, includes severe head trauma from being accidentally hit in the head at the age of 17 with a golf club as a friend engaged in practice swings, a serious car accident that caused a concussion, one face plant into a concrete patio at a restaurant resulting from a damaged threshold that caught my heel, to nine years exposure to various forms of mold concealed in homes that I had purchased to high levels of chemicals in an apartment I lived in for a short period of time while building a house.
It was not until October 2023 that I met a physician that took the time to understand the mechanics of my illness. Alberto Espay, MD, at the James J. and Joan A. Gardner Family Center for Parkinson Disease and Movement Disorders, at University of Cincinnati College of Medicine. I learned more about my brand of Parkinson’s in one afternoon with Dr. Espay then I had over the 10 preceding years with a variety of neurologists.
Today, I could write a book on the people I have met in my travels, our discussions about many different topics, and their kind and subtle offers of help in many different ways. New York is one of the kindest cities on this planet. There’s always someone ready in a moment’s notice offering to help. Sometimes I ask but typically most beat me to it. Such help as assisting me across the street during times of high traffic or one of my personal favorites, coming to a dead halt at a threshold at either an entrance door or elevator door.
My Parkinson’s seems to have a mind of its own. For example, during the time when I am receiving help (and that is typically when I have forgotten to take my medicine on time or I am in large crowds) I may move with great deal difficulty, unless I’m holding onto the assisting person’s left arm. Just the other day at the mall a woman was helping me over a threshold. She extended her right arm, and I barely moved. I explained to her how I do much better if I am on someone’s left side. As soon as she changed sides, I took off. She laughed and said, you weren’t kidding.
Freezing of gait is the temporary, involuntary inability to move. It can be a common symptom of Parkinson's. Learn more.
I play the piano and write poetry as a means of expressing moving experiences and challenges. I find it’s both a great outlet and refuge (my poems can be found on my website, Poetry for Today). I also find helping others is a valuable way to bring meaning to my life. This in fact explains my role as an advocate.
After 13 years with Parkinson’s disease, I describe myself as deliberate and purpose driven. On the one hand, Parkinson’s has reduced opportunities, but on the other hand, it has presented new and perhaps even richer opportunities than I could have ever imagined – such as co-authoring an article with a neurologist in Perth, Australia, and a psychiatrist in Leicester, UK. Youwill never find a more caring or giving group of people than those living with Parkinson’s.
My Parkinson’s experience led me to participate in the Parkinson’s Foundation PD GENEration genetics study, where I simply provided a sample and waited several months for a result. I was happy to be part of the study. Not only was it my first time participating in a PD research study, but I am now more likely to find and participate in PD studies in the future.
Each day I live with awareness of my disease as it pertains to my body, energy level and mood. Parkinson’s has required adjustments, patience and self-advocacy but it has not diminished my intellect, curiosity, creativity or leadership. If anything, I feel sharper than I have in the last 15 years.
In summary, continuity of purpose and intentionality as to where I want to place my energy and engage on a daily basis is what motivates me. Adaptation and resolve on those days where I have neither slept the hours I would’ve liked to have nor exercised in the manner to which I am accustomed is critical.
Overall, I do my best to maintain a can-do attitude and perspective and acknowledge that while Parkinson’s does not define me, it drives my commitment to raise awareness and promote collaborative research and personalized medicine for better individualized treatments and eventually cures.
After all, there is not one Parkinson’s, and there is not one cure.
The Parkinson’s Foundation is here to help empower you throughout your Parkinson’s experience. Explore our resources and support and find what works for you.
Dan Rothschild is a Fairport, NY, resident along with being a Parkinson’s Foundation New York Chapter Board member, a Parkinson’s Foundation Ambassador and a Research Advocate. He has found his passion for ping pong improves his Parkinson’s symptoms and enables him to travel and share his game and PD experiences with amazing and inspiring people. Check out his story “How Parkinson’s and ping pong help me to see the world” below:
Six years ago, when I was diagnosed with Parkinson’s disease (PD), I never contemplated that the diagnosis would result in opportunities to see the world. Nevertheless, in one of my life’s great ironies, my diagnosis has resulted in travels to far flung and interesting destinations and encounters with inspiring and wonderful people, all because of the disease and a love for one of America’s least followed sports: ping pong.
Like many Americans I played ping pong as a kid, in the basements of friends’ houses, at camp, and in dorms. Most of my “training” occurred in the 1970s during my sophomore year at the University of Rochester.
Adjacent to the laundry room located in one of the dorms was a single ping pong table. My roommate, Steve, and I, would carry our laundry to the dorm, strip to our skivvies, and play for hours while the machines did their work. The larger the loads the longer we played and, despite both of us being hackers without formal coaching, we developed some pretty good ping pong skills in the process.
Fast forward to 2020 and my PD diagnosis. After absorbing the somewhat earth-shattering news, I asked my doctor how I could best help myself deal with the disease. His answer was exercise.
So, I set about filling my exercise dance card with activities that I had always enjoyed and was already engaged in such as tennis, paddle tennis, cycling, hiking, cross-country skiing and ping pong.
Why ping pong? Ping pong is a "whole-brain activity" that not only engages motor activity (e.g., agility, balance, stamina, hand-eye coordination) but also requires the brain to engage in motor planning, visual attention, visuospatial processing, strategy formation, and executive functioning.
The game also fosters social connections among players. PingPongParkinson® (PPP), founded by Nenad Bach, helps promote ping pong as a PD therapy, and now operates more than 400 chapters in 31 countries. PPP also holds an annual World Championship, six of which have been held to date.
Together with my wife, I was fortunate to attend the two most recent World Championships, in Lasko, Slovenia in 2024 and Lignano Sabbiadoro, Italy in 2025. The 2025 tournament hosted approximately 1,700 matches between more than 300 players. While play was vigorous and often intense as even players with PD want to win, players socialized and bonded with others from 26 countries, supported and encouraged one another, and were inspired and awed by one another’s abilities, heart and perseverance. Each player gained new partners to support them on their PD journey.
The magic of the World Championship experience was perhaps best expressed by Steve Welling, a participant in the 2019 and first PPP World Championship held in Westchester County, who wrote: “The ping-pong center was a place where persons with even highly visible symptoms were not judged; where persons with hidden, secret pain were finally understood; where we conversed openly, without shame, about our conditions. But mostly, where we were free to follow two of the simplest human instincts: to make new friends and play with them.”
Steve’s sentiments were embodied in each of the World Championships that I attended, and I also experience them weekly at my local PPP chapter sessions. Together with the physical, cognitive and social benefits of the game, they motivate my play and my desire to attend future World Championships, as long as health and resources permit.
Never in my wildest dreams did I think that my PD journey would include smacking a little white ball all over the world with wonderful and inspiring people!
Dan is a co-founder of the Rochester (Fairport), NY chapter of PingPongParkinson®. For more information visit www.pingpongparkinson.org. Players with PD at all skill levels are welcome. The Parkinson’s Foundation is a past sponsor of PingPongParkinson® through its Community Grants program.
Exploring Complementary Therapies and Functional Medicine in Parkinson’s Care
Integrative medicine combines evidence-based medicine with proven complementary therapies and functional medicine, treatment that seeks to treat the whole person, to manage Parkinson’s disease (PD) symptoms. Explore how non-drug treatments — such as massage, acupuncture, red light therapy and CBD — are sometimes used to support well-being alongside traditional Parkinson’s care.
The following article is based on a Parkinson’s Foundation Expert Briefing exploring complementary therapies and holistic medicine in Parkinson's care, hosted by Britt Stone, MD, assistant clinical professor, Movement Disorders division, Department of Neurology at Vanderbilt University Medical Center (VUMC), a Parkinson's Foundation Center of Excellence, and clinical operations director for VUMC’s main campus neurology clinics.
Bridging Modern Medicine and Complementary Care
Traditional Western-medicine therapies include care your neurologist might prescribe, whether levodopa or other prescription medications, physical or occupational therapy or psychiatry referrals or a home health aide recommendation.
Integrative medicine blends medicine with proven complementary therapies to encourage optimal well-being.
Functional medicine falls under the umbrella of integrative medicine; it seeks to identify the root cause of illness and treat the entire person through a personalized care plan.
Complementary therapies are a component of functional medicine — these can include mindfulness, art or dance therapy or other treatments.
Taking a Deeper Look at Functional Medicine
Living well with Parkinson’s requires ongoing management — the right medications, dedicated exercise, a balanced diet and the ability to adapt to changing needs. Functional medicine also takes whole-body approach to care, with an emphasis on sustained nutrition, gut health and lifestyle factors.
At its core, functional medicine incorporates habits, routines and rhythms into daily living that contribute to overall health. From there, specific therapies to target individual needs are integrated into a care plan. These might include tailored exercise, supplements or herbal remedies or other complementary therapies.
Functional medicine can also include laboratory or diagnostic testing to uncover whether factors such as genetics or environmental exposures, including allergens, are impacting body function. Lab testing, which is not always covered by insurance, could include screening for environmental mold or other toxins in the body or assessments of:
Vitamin and mineral levels
Gut health
Inflammatory markers
Food sensitivities
To some extent, genetics, environment, previous illnesses, social and behavioral factors influence the health outcomes of every person. Functional medicine considers all these aspects and aims to slow disease progression and optimize quality of life.
Complementary Therapies
Parkinson’s can cause various non-movement symptoms — including stiffness, pain, anxiety, sleep and mood changes — and medications might not relieve them all. Non-drug complementary therapies have been moving into mainstream use for Parkinson’s symptom management, particularly for symptoms that don’t respond as well to prescription medications.
Certain complementary therapies that foster social connections and creativity while promoting purpose and play have been shown to improve quality of life. A 2020 meta-analysis showed that dance improved movement and non-movement symptoms and quality of life in people with Parkinson’s. A 2013 six-week clay art therapy program for Parkinson’s showed a decrease in depression, stress and obsessive-compulsive thinking among participants.
Some complementary therapies are rooted in Chinese philosophy and medicine and the concept of chi, or qi — the energy or life force that animates a person. Sluggish or deficient chi is thought to cause illness. Mind-body breathwork, such as Tai Chi and qigong, used to improve balance, function and mood in Parkinson’s, aims to improve energy flow.
Other therapies include:
Acupuncture: One study showed acupuncture, which also aims to balance energy flow, could possibly relieve musculoskeletal pain in Parkinson’s. Other case reports and clinical studies show that acupuncture may improve activities of daily living for people with Parkinson’s. Dry needling, a physical therapy technique used to ease pain, speed healing and improve movement, also uses small thin needles, but the technique is different and the goal is targeted muscle treatment, rather than improved energy flow.
Massage: It is used to boost relaxation and ease muscle spasms and cramps. A 2020 review looking at 12 studies of massage therapy and its benefits in Parkinson's found that:
Multiple types of massage induced relaxation.
Participants reported improvements in mood, fatigue, sleep and pain.
Some research shows neuromuscular types of massage, including shiatsu, tuina and Thai neuromuscular massage, might improve motor symptoms.
A 2020 review of 12 massage therapy studies and its benefit on Parkinson's symptoms, found that:
Multiple types of massage induced relaxation
Participants reported improvements in mood, fatigue, sleep and pain.
Some research shows neuromuscular types of massage, including shiatsu, tuina and Thai neuromuscular massage, might improve movement symptoms.
Red-light therapy: Emerging research shows low-level red-light therapy, also called photobiomodulation, may hold neuroprotective potential for Parkinson’s. However, more studies are needed. The potential health benefits of red-light therapy were discovered by NASA scientists who, when experimenting with light-emitting diodes to boost plant growth, noticed the lights also sped up wound healing.
Red-light therapy is currently used as part of photodynamic therapy in dermatology to treat certain types of skin cancer (the red light activates a photosensitizing drug). It is also used to treat psoriasis and acne. Red-light therapy is thought to work by stimulating the mitochondria in the cells being treated, leading to more efficient cellular activity and new cell growth. It is important to protect the eyes when using any sort of red-light therapy.
Cannabidiol (CBD): This compound is found in hemp and marijuana cannabis plants and interacts with the body's endocannabinoid system. CB1 and CB2 receptors, key components of this system, are involved in communication between brain cells and gut and immune system health.
There are higher concentrations in marijuana of THC, the compound that gets people high. Hemp is typically rich in CBD, a compound that may be helpful for sleep, anxiety or pain, though more research is needed. Epidiolex is a prescription form of CBD, approved by the Food and Drug Administration to treat certain types of seizures.
Medical and recreational marijuana legalization varies by state. There can be safety considerations, depending on your symptoms or medications you may be taking.
Working Complementary Therapy into Your Routine
Creating a personalized, balanced plan to manage Parkinson’s can help you maintain independence. Complementary therapies, therapeutic touch, a practitioner who listens to you, downtime and mindfulness can all benefit quality of life and improve sense of wellness.
When deciding what therapies might benefit you, think about your goals and what symptoms bother you the most. Have an open conversation with your healthcare team and discuss what treatment options are available. Talking about potential therapies with your doctor can help you avoid potential interactions and ensure the best outcomes. Connecting online or in person with people in the Parkinson’s community can also give you an opportunity to talk about what has worked for others and share your own experiences.
Consider therapies that align with your needs that are also accessible, affordable and manageable. Add in one new thing, observe the effects or benefits and adjust or change plans, with input from your healthcare team, as needed.
Learn More
Explore our resources about complementary therapies and symptom management in Parkinson’s:
