My PD Story

Susanne Bowen
People with PD

Susanne Bowen

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. You will 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.

My PD Story

Dan Rothschild headshot
People with PD

Dan Rothschild

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.

Exercise is essential for people living with Parkinson’s. Find your nearest Parkinson’s Foundation Chapter to explore exercise and wellness PD exercise classes near you.

Raise Awareness

Exploring Complementary Therapies and Functional Medicine in Parkinson’s Care 

massage

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:   

Raise Awareness

Explorando las terapias complementarias y la medicina funcional en el cuidado del Parkinson 

masaje

La medicina integrativa combina la medicina basada en la evidencia con terapias complementarias de eficacia comprobada y la medicina funcional; tratamiento que pretende atender a la persona en su totalidad, para controlar los síntomas de la enfermedad de Parkinson (EP). Explore cómo los tratamientos no farmacológicos, como los masajes, la acupuntura, la terapia con luz roja y el CBD, se utilizan a veces para favorecer el bienestar junto con los cuidados tradicionales del Parkinson. 

El siguiente artículo se basa en una de las Charlas con Expertos - Expert Briefings  de la Parkinson's Foundation, que explora las terapias complementarias y la medicina holística en el cuidado del Parkinson, presentada por la Dra. Britt Stone, profesora clínica adjunta, división de Trastornos del Movimiento, Departamento de Neurología en el Vanderbilt University Medical Center (VUMC, por sus siglas en inglés), un Centro de Excelencia de la Parkinson's Foundation y directora de operaciones clínicas para las clínicas de neurología del campus principal de VUMC. 

Un puente entre la medicina moderna y los cuidados complementarios 

Las terapias tradicionales de medicina occidental incluyen los cuidados que pueda recetar su neurólogo, ya sea levodopa u otros medicamentos recetados, fisioterapia o terapia ocupacional o psiquiatría o la recomendación de un asistente de salud a domicilio. 

La medicina integrativa combina la medicina con terapias complementarias de eficacia probada para fomentar un bienestar óptimo.  

  • La medicina funcional se engloba dentro de la medicina integrativa; busca identificar la causa raíz de la enfermedad y tratar a la persona en su totalidad mediante un plan de atención personalizado.  

  • Las terapias complementarias son un elemento de la medicina funcional: pueden incluir atención plena (mindfulness), terapia artística o de danza u otros tratamientos. 

Una mirada más profunda a la medicina funcional 

Vivir bien con Parkinson requiere un manejo continuo: los medicamentos adecuados, ejercicio estructurado, una dieta equilibrada y la capacidad de adaptarse a las necesidades cambiantes. La medicina funcional también adopta un enfoque integral de la atención, haciendo hincapié en factores constantes de nutrición, salud intestinal y estilo de vida. 

En esencia, la medicina funcional incorpora a la vida diaria hábitos, rutinas y ritmos que contribuyen a la salud general. A partir de ahí, las terapias específicas para atender las necesidades individuales se integran en un plan de cuidados. Éstos pueden incluir ejercicios adaptados, suplementos, hierbas medicinales u otras terapias complementarias.  

La medicina funcional también puede incluir pruebas de laboratorio o diagnósticas para descubrir si factores como la genética o la exposición ambiental, incluidos los alérgenos, influyen en el funcionamiento del organismo. Las pruebas de laboratorio, que no siempre cubre el seguro, podrían incluir la detección de moho ambiental u otras toxinas en el organismo o evaluaciones de:  

  • Niveles de vitaminas y minerales 

  • Salud intestinal 

  • Marcadores inflamatorios 

  • Sensibilidad alimentaria 

Hasta cierto punto, la genética, el medio ambiente, las enfermedades previas y los factores sociales y de conducta influyen en los resultados de la salud de cada persona. La medicina funcional toma en cuenta todos estos aspectos y busca ralentizar la progresión de la enfermedad y optimizar la calidad de vida. 

Terapias complementarias 

El Parkinson puede causar diversos síntomas no motores, como rigidez, dolor, ansiedad, sueño y cambios de humor, y es posible que los medicamentos no los alivien todos. Las terapias complementarias no farmacológicas se han ido generalizando para el tratamiento de los síntomas del Parkinson, sobre todo para aquellos que no responden tan bien a los medicamentos recetados. 

Ciertas terapias complementarias que fomentan las conexiones sociales y la creatividad al tiempo que promueven el propósito y el juego han demostrado mejorar la calidad de vida. Un metaanálisis de 2020 demostró que el baile mejoraba los síntomas motores y no motores y la calidad de vida en personas con Parkinson. Un programa de seis semanas de arteterapia con barro para Parkinson mostró una disminución de la depresión, el estrés y el pensamiento obsesivo-compulsivo entre los participantes.  

Algunas terapias complementarias están basadas en la filosofía y la medicina chinas y en el concepto de chi o qi, la energía o fuerza vital que anima a una persona. Se cree que un chi lento o deficiente provoca enfermedades. El trabajo de respiración mente-cuerpo, como el Tai Chi y el qigong, utilizados para mejorar el equilibrio, el funcionamiento y el estado de ánimo en el Parkinson, busca mejorar el flujo de energía. 

Hay otras terapias como: 

Acupuntura: Un estudio demostró que la acupuntura, que también busca equilibrar el flujo de energía, podría aliviar el dolor musculoesquelético en el Parkinson. Otros informes de casos y estudios clínicos muestran que la acupuntura puede mejorar las actividades de la vida diaria de las personas con Parkinson. La punción seca, una técnica de fisioterapia utilizada para aliviar el dolor, acelerar la curación y mejorar el movimiento, también utiliza pequeñas agujas finas, pero la técnica es diferente y el objetivo es el tratamiento del músculo específico, en lugar de mejorar el flujo de energía. 

Masaje: Se utiliza para aumentar la relajación y aliviar los espasmos y calambres musculares. Una revisión de 2020 que analizaba 12 estudios acerca de la terapia de masaje y sus beneficios en el Parkinson descubrió que:  

  • Múltiples tipos de masaje inducían relajación. 

  • Los participantes reportaron mejoras en el estado de ánimo, la fatiga, el sueño y el dolor.  

  • Algunas investigaciones demuestran que los tipos de masaje neuromuscular, como el shiatsu, el tui na y el masaje neuromuscular tailandés, podrían mejorar los síntomas motores.   

Terapia de luz roja: Las nuevas investigaciones muestran que la terapia con luz roja de bajo nivel, también llamada fotobiomodulación, puede tener un potencial neuroprotector en el Parkinson. Sin embargo, se necesitan más estudios. Los beneficios potenciales para la salud de la terapia con luz roja fueron descubiertos por científicos de la NASA que, al experimentar con diodos emisores de luz para estimular el crecimiento de las plantas, observaron que las luces también aceleraban la cicatrización de las heridas.  

La terapia con luz roja se utiliza actualmente como parte de la terapia fotodinámica en dermatología para tratar ciertos tipos de cáncer de piel (la luz roja activa un fármaco fotosensibilizante). También se utiliza para tratar la psoriasis y el acné. Se cree que la terapia con luz roja actúa estimulando las mitocondrias de las células tratadas, lo que conduce a una actividad celular más eficaz y al crecimiento de nuevas células. Es importante proteger los ojos cuando se utiliza cualquier tipo de terapia con luz roja. 

Cannabidiol (CBD): Este compuesto se encuentra en las plantas de cannabis como cáñamo y marihuana e interactúa con el sistema endocannabinoide del organismo. Los receptores CB1 y CB2, componentes clave de este sistema, intervienen en la comunicación entre las células cerebrales y la salud intestinal e inmunitaria. 

En la marihuana, hay mayores concentraciones de THC, el compuesto que produce un efecto psicoactivo. El cáñamo suele ser rico en CBD, un compuesto que puede ser útil para el sueño, la ansiedad o el dolor, aunque se necesita más investigación. Epidiolex es una forma recetada de CBD, aprobada por la Food and Drug Administration (Administración de Alimentos y Medicamentos) para tratar ciertos tipos de convulsiones.  

La legalización  de la marihuana medicinal y recreativa varía según el estado. Puede haber consideraciones de seguridad, dependiendo de sus síntomas o de los medicamentos que esté tomando.  

Incorporación de la terapia complementaria a su rutina  

La creación de un plan personalizado y equilibrado para manejar el Parkinson puede ayudarle a mantener su independencia. Las terapias complementarias, el contacto terapéutico, un profesional que escuche, el tiempo de descanso y la atención plena pueden mejorar la calidad de vida y la sensación de bienestar.  

A la hora de decidir qué terapias podrían beneficiarle, piense en sus objetivos y en los síntomas que más le molestan. Mantenga una conversación abierta con su equipo de atención médica y analice las opciones de tratamiento disponibles. Hablar acerca de las posibles terapias con su doctor puede ayudarle a evitar posibles interacciones y garantizar los mejores resultados. Conectarse en línea o en persona con personas de la comunidad de Parkinson también puede darle la oportunidad de hablar acerca de lo que ha funcionado para otros y compartir sus propias experiencias.   

Considere terapias que se ajusten a sus necesidades y que además sean accesibles, asequibles y manejables. Añada un elemento nuevo, observe los efectos o beneficios y ajuste o cambie los planes, con la opinión de su equipo de atención médica, según sea necesario. 

Aprenda más  

Explore nuestros recursos acerca de las terapias complementarias y el manejo de los síntomas en el Parkinson:   

My PD Story

Reka Janisse headshot
People with PD

Reka Janisse

Hi. I’m Reka Janisse, and I live with young-onset Parkinson’s disease (YOPD). My symptoms began at 39, and I was officially diagnosed at 42. I’ve learned that Parkinson’s isn’t just about tremors — it’s an unpredictable mix of over 40 possible symptoms, from bradykinesia (slowness of movement) to dyskinesia (involuntary movement of face, arms or legs) and every day can feel different. Some mornings I’m dancing on TikTok, and others I’m moving in slow motion. The key? I never let two bad days stack up. 

I approach Parkinson’s like I do my fitness training: with discipline, curiosity, and a lot of humor. Alongside medication, I lean on what I call “frosting therapy” — the lifestyle habits that make the whole journey more manageable. That means prioritizing exercise and focusing on muscle building as a way to fight back against symptoms.  

I’m currently training to compete in my second HYROX, a high-intensity fitness competition, because mobility, strength and resilience are my best long-term strategies. Every PR (personal record) in the gym feels like a personal win over Parkinson’s. 

Reka doing a Moving Day video

I chose to tackle HYROX Dallas as a Parkinson's Champion, where I could design my own event. Not only will it challenge me physically, but the fundraising will help everyone living with PD. I’m interested in spreading awareness and inspiring others to take on a challenge. It’s you against you and it’s such a fulfilling and rewarding challenge especially if you do it year after year and get to work on improving your time. Considering this is a degenerative disease that is a thrilling goal to achieve! 

Nutrition is another cornerstone. I’ve made it a non-negotiable to measure my meals and keep my diet steady, not out of obsession but because I know how much it impacts my energy, my gut health and even dopamine production. Food is fuel — and in my case, it’s therapy, too. 

I also stay tuned into innovative approaches — like red light therapy, sauna and cold plunge therapy, and supplements — because supporting my body at the cellular level helps me manage symptoms and maintain quality of life. My main focus is to reduce oxidative stress and inflammation and improve cellular health. 

Most importantly, I share this journey publicly on Instagram, Facebook, and TikTok to build awareness, reduce the stigma surrounding Parkinson’s, and bring some laughter into a space that often feels heavy. Humor is my superpower. By mixing honest education with moments of levity, I aim to show that living with Parkinson’s doesn’t mean losing joy. 

I mostly rely on social media for my updates and news about Parkinson’s. I love the Parkinson’s Foundation Instagram page! Follow them on Instagram now.  

My mission is to inspire and empower others, especially those diagnosed at a younger age, to take ownership of their health. Parkinson’s is part of my story, but it’s not my whole story. With movement, nutrition, community, and a little sass, I’m proving every day that you can live strong, laugh loud, and push back against this disease.  

Support Reka as a Parkinson’s Champion today! And sign up to become a Parkinson’s Champion by running in an upcoming race or choosing your own event.

Caregiver Corner

3 Essential Resources for 3 Different Kinds of Care Partners

Older couple walking through a park

November is National Family Caregivers Month, a time to honor care partners. This year, the Parkinson’s Foundation is highlighting the diverse experiences of caregiving with our theme, “Real Care. Anywhere.” 

Care partners are essential members of the care team for people with Parkinson’s disease (PD). However, the way they provide care and support can look different — from sharing a home with someone who has PD to providing care from afar to managing PD alone — caregiving is not one-size-fits-all. We are proud to provide support for all types of care partners. Here are essential resources for three different kinds of care partners: 

Everyday Care Partner 

An everyday care partner lives with someone who has PD and offers daily support. This can include setting up and attending appointments, helping with medications and navigating day-to-day challenges.  

1. Read our Care Partner Guide.

Whether you have been a care partner for a while or are just starting to navigate Parkinson’s disease, this guide is designed for you. It includes practical tips about things like building a support network and planning for the future, along with insights from other care partners and activities and worksheets to support your journey. 

2.  Check out tips for caring for yourself.

It can be hard to find balance as a care partner, but it is important to remember to care for yourself as well. These tips can help you prevent caregiver burnout, manage stress and build a support system. 

caregiver support group

3. Find a Parkinson’s support group near you.

In addition to providing a comfortable environment for asking questions and sharing experiences, support groups can lead to lasting friendships. Some groups are for care partners only, while others include care partners and people with PD. Contact our Helpline at 1-800-4PD-INFO (1-800-473-4636) to find one near you. 

Caring From Afar 

Some care partners live away from their loved ones and offer support from a distance. This type of caregiving can include managing logistics for everyday care, finding ways to coordinate tasks virtually or providing emotional support through regular phone calls and visits.  

1. Learn about Parkinson’s.

You will be better able to provide support if you have a basic understanding of PD. Our PD Library is filled with resources to help you learn more about Parkinson’s, being a care partner and managing daily activities and long-term plans. 

2. Connect with outside help.

If you are the primary care partner and live away from your loved one, consider hiring someone to help you manage day-to-day care needs. From utilizing your network to finding in-home care providers, know that there are many options available to help you assist your loved one from afar. 

3. Get yourself and your loved one connected with a local Parkinson’s Foundation chapter. 

Connect with other people with PD and care partners in each of your areas, learn about events and learn more about living well with Parkinson’s together, from a distance. 

Solo Care Partner 

Many with Parkinson’s care for themselves. This often-overlooked group acts as their own care partner, managing schedules, medications and wellness routines on their own. 

1. Join the PD Solo Network.

The PD Solo Network is a virtual network for people with Parkinson’s disease who live alone, by choice or circumstance. This community meets monthly to share ideas, review resources and build relationships. 

2. Review the Home Safety Considerations checklist.

Ensure your home is safe and easily accessible. This checklist will help you determine if anything about your home or lifestyle should be adapted to help you live well with Parkinson’s.  

3. Remember, our Helpline is always here for you.

Call or email the Parkinson's Foundation Helpline 1-800-4PD-INFO (1-800-473-4636) for answers to your Parkinson’s disease (PD) questions. Our Helpline is answered by PD information specialists who are skilled in providing the right information at the right time. 

Real Care Starts Here 

No matter what caregiving looks like for you, the Parkinson’s Foundation is here to help.  

  • Sign up for free online courses through our Care Partner Program 

Learn how you can celebrate National Family Caregivers Month at Parkinson.org/CaregiversMonth. 

Raise Awareness

Básicos de los medicamentos para el Parkinson

Parkinson's Medication

La medicación desempeña un papel fundamental en el tratamiento de la enfermedad de Parkinson (EP), pero es sólo una parte de un plan de cuidados más amplio.  

El siguiente artículo se basa en una Charla con Expertos - Expert Briefing de la Parkinson's Foundation donde el Dr. Danny Bega explora cómo encajan los medicamentos en el cuidado integral y holístico del Parkinson. El Dr. Bega tiene una maestría en Ciencias, es profesor adjunto de Neurología, director médico y director del programa de residencia en Neurología del Centro de la Enfermedad de Parkinson y Trastornos del Movimiento de la Northwestern University Feinberg School of Medicine, un Centro de Excelencia de la Parkinson’s Foundation. También es director de los programas de las enfermedades de Huntington y Wilson en Northwestern. 

Comprender la conexión entre la dopamina y el Parkinson 

El Parkinson es un trastorno progresivo relacionado con la disminución de los niveles de dopamina, una sustancia química cerebral que influye en el movimiento, la memoria y muchos otros procesos vitales del organismo. Otras sustancias químicas del cerebro, como la norepinefrina y la serotonina, también pueden verse afectadas en la enfermedad de Parkinson e influir en los síntomas.  

A medida que avanza el Parkinson, el número de células cerebrales que producen dopamina sigue disminuyendo y las células restantes luchan por almacenar y liberarla. Esto provoca lentitud de movimientos, temblores, rigidez y otros síntomas motores. También puede causar diversos síntomas no motores, como estreñimiento, pérdida del olfato y cambios en el pensamiento. 

Manejo del Parkinson’s 

El Parkinson es una enfermedad compleja. No existe un tratamiento estándar. Sin embargo, los medicamentos —junto con el ejercicio, la atención integral, una dieta nutritiva y prácticas de atención plena— pueden controlar los síntomas del Parkinson y ayudarle a vivir bien.  

Establecer una rutina de ejercicio poco después del diagnóstico puede ayudar a ralentizar la progresión de la enfermedad y mejorar el movimiento, la fuerza, el equilibrio y el estado de ánimo. También puede ayudarle a dormir mejor. Mantenerse social e interactuar puede reducir la sensación de soledad.  

Su equipo de atención es igualmente importante. Busque profesionales médicos expertos en Parkinson, incluyendo un neurólogo, un terapeuta del habla y el lenguaje, un fisioterapeuta y un terapeuta ocupacional, un trabajador social y otros profesionales de la salud, para que le ayuden a controlar los síntomas de la EP. No deje de acudir a las revisiones periódicas. 

El papel de los medicamentos 

La mayoría de los medicamentos para el Parkinson mejoran los síntomas aumentando la dopamina en el cerebro o actuando como la dopamina. La levodopa es el fármaco más eficaz para tratar los síntomas del Parkinson. En el transcurso del Parkinson, la mayoría de las personas tomarán levodopa en algún momento.  

La ansiedad y la depresión también pueden ser frecuentes en el Parkinson y afectar al bienestar incluso más que los síntomas motores. Tratar estos síntomas mediante una combinación de medicamentos, como un ISRS, un IRSN o la mirtazapina, —un antidepresivo tricíclico—, junto con terapia, control del estrés y mantener la actividad física, puede reducir la discapacidad significativamente.  

Las personas recién diagnosticadas de Parkinson a menudo se preguntan cuándo deben empezar a tomar la medicación. Los estudios demuestran que esperar no tiene beneficios. La mayoría de los médicos concuerdan en que debe empezar a tomar la medicación cuando los síntomas se vuelvan molestos.  

Dado que no cada persona experimenta la EP de forma única, los tratamientos varían de una persona a otra, al igual que el ritmo de progresión. Sin embargo, conocer los estadios típicos del Parkinson puede ayudarle a anticiparse a los cambios: 

  • En los primeros cinco años después del diagnóstico, es posible que los síntomas no afecten su vida diaria significativamente. Su médico podría recomendarle un ensayo clínico. La participación en la investigación del Parkinson podría darle acceso temprano a nuevos tratamientos, mejorar la atención y sentar las bases para una cura.  

  • En un plazo de uno a diez años, conforme los síntomas empiezan a interferir con las actividades, la mayoría de las personas con Parkinson pueden esperar una respuesta duradera y constante a la medicación.  

  • Entre cinco y 20 años después del diagnóstico, al cerebro le resulta cada vez más difícil conservar dopamina. La respuesta de su cuerpo a la levodopa puede volverse más corta y menos eficaz. Esto puede provocar fluctuaciones motoras: periodos en "on", cuando la medicación funciona bien, y periodos en "off", cuando la medicación deja de hacer efecto y los síntomas reaparecen. Es importante trabajar de cerca con su médico para ajustar el tratamiento y encontrar lo que mejor se adapte a usted. 

  • Después de 10 o más años de vivir con Parkinson, las personas pueden experimentar problemas más importantes. Algunas personas pueden desarrollar importantes problemas de memoria y pensamiento. Problemas de equilibrio, caídas y congelamiento (la incapacidad temporal para moverse) también puede volverse un problema. Su médico puede hablarle de ajustes de la medicación o terapias farmacológicas o mandarlo a ver a un profesional médico adecuado para sus necesidades, que puede ser un neuropsicólogo, un psiquiatra, un terapeuta del habla y el lenguaje o un terapeuta ocupacional. 

Tipos de medicamentos utilizados en el Parkinson 

Es frecuente que las personas con Parkinson tomen una variedad de medicamentos, en distintas dosis y momentos del día, para manejar los síntomas. Esto puede incluir: 

Agonistas de la dopamina: al principio, los fármacos que estimulan la dopamina en el cerebro, como el pramipexol, el ropinirol y la rotigotina, a menudo pueden tratar los síntomas motores del Parkinson. Los agonistas de la dopamina presentan menos riesgo de discinesias, movimientos erráticos involuntarios que suelen comenzar tras unos años de tratamiento con levodopa.  

Los efectos secundarios pueden incluir náuseas, mareos, somnolencia, confusión y trastornos del control de los impulsos, como compras compulsivas, juegos de azar, comer en exceso y los impulsos sexuales. Los estudios muestran que un 28% de las personas con Parkinson dejan de tomar agonistas de la dopamina debido a los efectos secundarios, mientras que un 40% necesita añadir otra medicación en un plazo de dos años. 

Levodopa: la levodopa, el fármaco más eficaz para los síntomas motores del Parkinson, sustituye a la dopamina en el cerebro. Suele administrarse en combinación con el fármaco carbidopa para reducir las náuseas, un efecto secundario frecuente. Tomar levodopa con las comidas también puede reducir las náuseas, pero las proteínas pueden interferir en la eficacia del fármaco. Alrededor de un 2% de las personas dejan de tomar levodopa debido a los efectos secundarios, mientras que un 15% necesita añadir otra medicación a los dos años.  

Las discinesias, también relacionadas con la levodopa, pueden controlarse a menudo mediante un ajuste de la dosis o mediante tratamiento directo, utilizando un medicamento llamado amantadina. Funciona bloqueando el NMDA, una sustancia química que provoca movimientos extras. La amantadina de liberación inmediata también se utiliza a veces sola para los síntomas motores del Parkinson. Existe un mayor riesgo de confusión y alucinaciones con el uso de amantadina en personas de más de 75 años. También puede asociarse a hinchazón de piernas, alteraciones de la piel y otros efectos secundarios.  

Anticolinérgicos: Los medicamentos trihexifenidilo y benztropina se utilizan a veces para mejorar el temblor o las distonías (calambres dolorosos y sostenidos). Actúan bloqueando la acetilcolina, una sustancia química del cerebro relacionada con el movimiento. Sin embargo, su uso debe evitarse en personas de 70 años o más debido al riesgo de confusión y alucinaciones. Los anticolinérgicos también pueden asociarse a visión borrosa, sequedad de boca, estreñimiento y retención urinaria. 

Algunos de los medicamentos que su médico podría considerar para mejorar los efectos de la levodopa son: 

Inhibidores de la MAO-B: los inhibidores de la monoaminooxidasa B rasagilina, selegilina y safinamida ponen más dopamina a disposición del cerebro. Estos medicamentos pueden utilizarse solos o en combinación con la levodopa para aumentar su eficacia. Los inhibidores de la MAO-B suelen tolerarse bien, pero un 70% de las personas que los toman solos para el Parkinson necesitarán añadir otra medicación a los dos años. 

Inhibidores de la COMT: medicamentos como la entacapona y la opicapona aumentan la levodopa disponible en el cerebro al bloquear la enzima catecol-O-metil transferasa.  

Antagonista del receptor A2A: la istradefilina, un antagonista de la adenosina A2A, bloquea la adenosina en los receptores A2A del cerebro para reducir el tiempo en "off" de la levodopa. 

La levodopa inhalada se utiliza a menudo con la levodopa, según sea necesario, para el tiempo en "off" repentino. La apomorfina inyectable también puede utilizarse a demanda, para el alivio en tiempos en "off". Ambos medicamentos pueden aumentar el riesgo de discinesias. 

Es importante trabajar con su médico para encontrar el equilibrio adecuado para usted. Su médico puede aumentar o disminuir su dosis de levodopa con base en sus síntomas. Por ejemplo, el temblor, la rigidez o los problemas de movilidad podrían beneficiarse de un aumento de la levodopa. Sin embargo, las alucinaciones, la confusión y la baja presión arterial podrían mejorar con una disminución de la levodopa. 

También existen estrategias y medicamentos para controlar el babeo, el goteo nasal, los problemas de sueño, los problemas intestinales, los cambios en el pensamiento y otros desafíos del Parkinson. 

¿Qué pasa si no funciona la levodopa? 

Si está tomando levodopa pero no obtiene beneficios, hable con su médico. Estas son algunas preguntas que puede hacer: 

  • ¿El síntoma que le molesta no responde bien a la levodopa? ¿Podría estar relacionado con otro problema de salud?  

  • ¿Puede haber algo que esté interfiriendo en la absorción de la medicación? Algunas personas experimentan menos beneficios cuando toman levodopa con una comida alta en proteínas. 

También es importante discutir si es necesario ajustar la dosis. Por ejemplo, los efectos del Sinemet, una forma de levodopa, sólo duran poco tiempo: a los 90 minutos, la mitad ha desaparecido. Su médico puede ajustar el horario y la dosis de levodopa, utilizar una formulación de acción más prolongada o recomendar tomar la medicación 30 minutos antes o 60 minutos después de comer. 

Terapias avanzadas 

Si se vuelve difícil controlar las fluctuaciones motoras ajustando la medicación oral, existen otras opciones para mejorar la absorción de la medicación y reducir el tiempo en "off":  

  • La terapia con Duopa suministra carbidopa-levodopa en gel directamente al intestino a través de un tubo colocado quirúrgicamente.  

  • La terapia con foscarbidopa y foslevodopa (Vyalev) utiliza una bomba para administrar de forma constante una forma de levodopa bajo la piel a través de un pequeño tubo llamado cánula. Se utiliza una aguja para colocar la cánula. 

  • La terapia continua con apomorfina (Onapgo) utiliza una bomba para administrar apomorfina de forma continua a través de una fina aguja colocada bajo la piel.  

Estos medicamentos requieren ajustes en el estilo de vida, instrucción para su uso y un compromiso con el buen cuidado de la piel para reducir el riesgo de irritación e infecciones. 

Otras opciones además de la medicación 

En ocasiones, los síntomas de Parkinson más avanzados pueden beneficiarse de otras estrategias de tratamiento, como la estimulación cerebral profunda (ECP, o DBS, por sus siglas en inglés), que consiste en implantar quirúrgicamente un generador de impulsos eléctricos conectado a electrodos colocados en el cerebro para tratar los síntomas motores del Parkinson y algunos síntomas no motores.  

La ECP podría ser considerada para alguien que:  

  • vive con la enfermedad de Parkinson clásica  

  • tiene síntomas que responden a la levodopa  

  • experimenta frecuentes fluctuaciones motoras y temblores, a pesar de una dosificación constante de la medicación 

  • tiene discinesias molestas 

Tras la ECP, muchas personas pueden reducir su medicación y seguir experimentando una reducción de los síntomas de la EP. La reducción de la dosis de medicamento puede llevar a menos discinesias. 

El ultrasonido focalizado, una terapia no invasiva, no requiere una incisión quirúrgica. Durante el procedimiento, se dirigen ondas sonoras de alta frecuencia a una zona específica del cerebro relacionada con el temblor para aliviar el temblor de la enfermedad de Parkinson. A diferencia de la terapia de ECP, que es ajustable y reversible, los cambios por ultrasonido focalizado son permanentes. 

Si tiene preguntas acerca de las opciones de tratamiento de la EP, comuníquese con nuestra Línea de Ayuda al 1-800-4PD-INFO (473-4636) opción 3 para español o en Helpline@Parkinson.org. 

Aprenda más 

Explore nuestros recursos acerca de medicamentos para tratar los síntomas del Parkinson:  

My PD Story

Arman photo with family
People with PD

Arman Farahvar

Before my grandfather (Papa) was diagnosed with Parkinson's disease (PD) several years ago, my family noticed he was losing his footing and falling quite often. As an active person, it was very unlike him. After his diagnosis, he was still mobile. He needed to be supervised by me, a teenager at the time, but he could walk short distances and use the restroom. But progressively, it became so much worse.

Papa was one of the most prideful men I ever met, and his presence always stood strong. He commanded rooms. In a car, he was always the one behind the driver's seat. He threw the biggest parties! He had complete control of every aspect of his life.

But now he can now only speak few words at a time and needs assistance to walk. He has depression — a PD symptom experienced by 50% of people with Parkinson’s — because he is socially isolated from the people he loves, and cannot communicate in depth with his family.

But I've also seen the moments of love and humbleness. He loves to have his family around him in this time of need, to hug him, to do things for him or to give him gifts. My little sister makes arts and crafts for him.

He greatly appreciates every moment he has with us, his family. Just sitting down with him to watch a show means so much to him.

Stand up for Parkinson's Comedy Night

Parkinson’s changed Papa forever. That’s why I help my uncle, comedian Paul Farahvar, with his annual Stand Up For Parkinsons comedy night fundraiser. This unique event supports the Parkinson’s Foundation and directly helps people with Parkinson’s in our area as proceeds support the Parkinson’s Foundation Midwest Chapter. Everyone who comes out to support this cause helps honor Papa, and I’m proud to be a part of that.

Looking for ways to help your local PD community? Learn more on our How You Can Help page.

My PD Story

Photo of Paul
People with PD

Paul Schnabel

It started with something small: I found it difficult to button my shirt with my right hand.  

In 2022, that small sign became a life-changing diagnosis: Parkinson’s disease. With no family history and a lifelong focus on health, the news was a shock. 

I tackled it head-on with exercise, therapy, a healthier diet and a support group for those newly diagnosed. My wife stood beside me every step of the way, connecting with care partner groups and reminding me we were in this together. 

Then, in the spring of 2024, my world collapsed. She died suddenly, just three months before the birth of our first grandchild. For months, I let grief take over—poor diet, little sleep, no exercise. But slowly, I began to climb back, knowing she’d want me to keep living, not just surviving. 

Now, I share my journey through my blog—writing about Parkinson’s, grief and hope. My grandson is one year old, and when I hold him, I see her in his eyes. 

I’m grateful for my Parkinson’s community and proud to serve as a Parkinson's Foundation Ambassador speaking at local events, fundraising and supporting others facing the same road. Parkinson’s is part of my life, but it doesn’t define me. 

I have someone who I get to share my life with, as well as friends and family who lift me up. My disease is manageable. And every day, I try to live the kind of life my wife believed I could—one filled with purpose, gratitude, and love. 

My PD Story

Pam Marcott Headshot
Researchers

Pam Marcott, MD, PhD

2025 Postdoctoral Fellowship

Reclaiming Restful Sleep by Unraveling How Parkinson’s Changes the Brain 

Along with the typical movement-related symptoms, many people with Parkinson’s disease (PD) also experience other non-movement health issues. These non-movement symptoms can be quite debilitating and sometimes more difficult to notice by care partners. 

One common non-movement PD symptom is difficulty sleeping, often in the form of waking up frequently throughout the night. Pamela Marcott, MD, PhD, a recipient of a Parkinson’s Foundation Postdoctoral Fellowship, is casting a spotlight on the sleep-associated circuits of the brain to understand how exactly PD impacts sleep patterns. By uncovering the mechanisms behind PD-related sleep problems, she hopes to help advance new therapies for such disturbances. 

While much of the neuroscience of sleep is still a mystery, researchers do know that staying asleep through the night requires a highly calibrated balance of different signals in the brain. These sleep signals are relayed through brain cells called neurons and can vary in frequency and intensity, depending on their purpose. If these signals become altered and imbalanced, sleep fragmentation occurs with "frequent changes between different sleep and wake states, leading to less consolidated and restful sleep,” said Dr. Marcott. 

Under the mentorship of Alexandra Nelson, MD, PhD, and Ying-Hui Fu, PhD, at the University of California, San Francisco, a Parkinson’s Foundation Center of Excellence, Dr. Marcott is investigating how PD changes the behavior of neurons in a specific sleep-regulating region of the brain called the pedunculopontine nucleus (PPN). PPN neurons act like telephone operators, relaying important signals across the brain. Using mice with and without PD-like symptoms, she will measure how the disease affects the ability of PPN neurons to transmit their important sleep signals. 

“Results of this study will improve our understanding of the circuit mechanisms that regulate sleep disturbances in PD, which will inform future therapeutic treatments.” - Dr. Marcott 

After learning more about how PD changes the sleep-related neurons’ signaling ability, Dr. Marcott will then monitor the brains of the mice as they sleep. She will keep a close eye on how the PPN neurons activate during sleep phase transitions, as she believes PD causes these neurons to be overactive and lead to fragmented sleep. Observing in real time how PD alters sleep regulation in the brain will provide a strong foundation for understanding how to treat this symptom and give restful nights back to people with PD. 

 “As a physician scientist in this space I am committed to making meaningful discoveries in the laboratory that will benefit my patients, and I am excited to have the opportunity to start this phase of my career with the support of the Parkinson's Foundation,” said Dr. Marcott. 

Meet more Parkinson’s researchers! Explore our My PD Stories featuring PD researchers. 

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