Raise Awareness

Descubra cómo 5 líderes comunitarios están conectando con las comunidades hispanas y latinas

🧠 ¿Qué aprenderá en este artículo?

Este artículo destaca los esfuerzos de la Parkinson's Foundation para apoyar a las comunidades hispanas y latinas que conviven con la enfermedad de Parkinson a través de subvenciones comunitarias. Se analiza lo siguiente:

  • Las subvenciones comunitarias de la Parkinson's Foundation tienen como objetivo cerrar las brechas en la atención de Parkinson y los recursos a nivel local en todo Estados Unidos.
  • Cinco programas locales que abordan las barreras en la educación y el apoyo para las personas de habla hispana que conviven con la EP.
  • Programas que van desde talleres educativos y grupos de apoyo hasta clases de ejercicio adaptadas a la EP y recursos para cuidadores, ofrecidos en persona y en línea.
  • Cómo encontrar programas locales.
Amigos hablando en el parque

Los miembros hispanos y latinos de la comunidad de la enfermedad de Parkinson (EP) a menudo enfrentan desafíos distintos para vivir bien con Parkinson, incluidas las barreras del idioma, el acceso limitado a la atención médica y las brechas en los materiales educativos culturalmente alineados.

La Parkinson's Foundation reconoce estas disparidades y trabaja activamente para hacer que la atención médica de calidad sea más accesible para todas las personas con Parkinson, en parte a través de nuestro programa de subvenciones comunitarias.

El programa de subvenciones comunitarias de la Parkinson's Foundation apoya a grupos locales en todo Estados Unidos en la mejora de la salud, el bienestar y la educación para las personas que viven con Parkinson. Desde 2011, la Fundación ha invertido más de $12.7 millones en casi 1,000 programas comunitarios.

Conozca a continuación a cinco de nuestros beneficiarios de subvenciones comunitarias, premiados por sus programas educativos, de ejercicio y para cuidadores adaptados y creados para las comunidades de la EP de habla hispana.

Conozca a Irving Vega, PhD: mejoras en el acceso a la educación y los recursos en español en el oeste de Michigan

Irving Vega, PhD, profesor asociado distinguido Red Cedar en Michigan State University, recibió una subvención comunitaria en 2025 para comprender y abordar mejor las necesidades únicas de las comunidades hispanas y latinas en el oeste de Michigan —poblaciones históricamente subrepresentadas en la educación e investigación de la EP.

Como parte de esta subvención, realizó una encuesta comunitaria para evaluar el conocimiento sobre la EP y encontró las siguientes brechas:

  • Aunque la exposición a pesticidas es un riesgo ambiental bien establecido para la EP, muchos miembros de la comunidad latina no lo identificaron como un factor de riesgo.
  • Solo el 16.9% identificó el sexo masculino como un factor de riesgo, a pesar de que los hombres tienen un mayor riesgo de padecer la EP.
  • La mayoría de los encuestados dependen de los médicos como su fuente principal de información (63.6%), pero el 62% informó no saber qué recursos relacionados con la EP están disponibles localmente.

Estos hallazgos destacaron una necesidad urgente de educación accesible y culturalmente adaptada. En colaboración con SABER (Supportive Alliance for Brain Education and Research), el Dr. Vega trabaja junto con socios comunitarios de confianza —Hispanic Center of West Michigan, Latin Americans United for Progress y Exalta Health— para llevar conocimientos sobre la EP que sean lingüística y culturalmente relevantes directamente a las personas que lo necesitan.

La subvención comunitaria de la Parkinson's Foundation hizo posible que el Dr. Vega implementara un modelo multifásico impulsado por la comunidad que de otro modo no habría sido factible, enfocado en:

  • Escuchar a la comunidad
  • Cocrear educación con organizaciones comunitarias
  • Desarrollar la capacidad comunitaria mediante la capacitación del personal en las organizaciones asociadas
  • Coorganizar eventos de aprendizaje comunitarios que reúnen a familias, cuidadores y adultos mayores en espacios comunitarios de confianza

Conozca a Beatriz Arguezo-González, RN: ampliación de un programa de talleres para aumentar la conciencia sobre la EP en Chicago

Basándose en la necesidad de educación accesible, el equipo de Chicago Hispanic Health Coalition, junto con FUERZA (Familias Unidas: Empoderando y Reforzando contra la Enfermedad de Parkinson), se enfoca en las necesidades únicas de los cuidadores.

Ofrecen talleres para ayudar a los miembros de la comunidad a comprender mejor la EP, navegar recursos en línea confiables y ayudarlos a prepararse para hablar con su médico de atención primaria.

La subvención comunitaria de la Parkinson's Foundation, otorgada en 2025, apoya la expansión de su programa de talleres, Door 2 Door, extendiendo su alcance comunitario con recursos y apoyo sobre la EP.

Al expandirse a una plataforma virtual, el Chicago Health Coalition ha alcanzado a más participantes que pueden unirse desde casa. El Chicago Health Coalition además ofrece talleres presenciales y conecta a los participantes con un trabajador de salud comunitario para apoyo. La Coalition también tiene como objetivo proporcionar a los cuidadores herramientas para abogar por una mejor atención para ellos mismos y sus seres queridos que conviven con la EP.

Conozca a Gemma Moya-Galé, PhD: fortalecimiento de la comunidad mediante grupos de apoyo en español

Conozca a Gemma Moya-Galé
Conozca a Gemma Moya-Galé

Una manera importante en que las personas con Parkinson encuentran comunidad y alivio es mediante grupos de apoyo donde las personas se reúnen y comparten sus experiencias, escuchan a sus pares y expresan emociones que las personas sin la EP pueden no comprender.

Gemma Moya-Galé, PhD, profesora asistente en Columbia University en Nueva York y beneficiaria de una subvención comunitaria en 2025, ofrece grupos de apoyo interdisciplinarios mensuales, llamados Espacios Compartidos.

Estos grupos combinan psicoeducación con salud mental e incluyen talleres que enriquecen cada sesión. Estas sesiones no solo proporcionan a los asistentes información práctica y estrategias para vivir bien con la EP, sino que también sirven como un foro para compartir experiencias personales y mejorar la calidad de vida de las personas que viven con la EP y sus familias.

Con la subvención comunitaria, la Dra. Moya-Galé continuará ofreciendo estos talleres, cubriendo una variedad de temas como mindfulness, movimiento y habla, y apoyo lingüístico a nivel local e internacional.

«Gracias a esta subvención comunitaria, estamos logrando el trabajo que nos apasiona y esperamos continuar por mucho tiempo. Nuestros grupos dan la bienvenida a personas hispanas/latinas que viven con la EP y sus familias y nuestro objetivo es empoderar a esta maravillosa comunidad». - Dra. Moya-Galé

Su objetivo es continuar aumentando la conciencia sobre la EP, crear recursos para los participantes basados en la experiencia de Espacios Compartidos y compartirlos con organizaciones interesadas en crear programas similares.

Conozca a Sara Correal: ampliando el acceso al ejercicio desde Austin hacia el extranjero

Conozca a Sara Correal

Un estudio de 2023 en California rural encontró peores síntomas motoresno motores en comunidades latinas. Dado que el ejercicio puede mejorar la función cognitiva y mejorar algunos síntomas de la EP, establecer una rutina de ejercicio poco después del diagnóstico es esencial. En Austin, TX, Power for Parkinson's en Español, ayuda a abordar esta brecha al proporcionar programas de ejercicio gratuitos dirigidos a los síntomas tanto presenciales como en línea.

Sara Correal, directora de Programación e Innovación en Power for Parkinson's, encontró que esta subvención comunitaria fue fundamental para ayudarla a expandir y fortalecer su programa en español.

  • A nivel local, la subvención apoyó la entrega de clases presenciales que proporcionan un espacio seguro y culturalmente receptivo para el movimiento, la educación y la conexión comunitaria.
  • A nivel internacional, expandieron su canal de YouTube en español, haciendo que recursos de ejercicio de alta calidad específicos para Parkinson sean accesibles para personas y familias más allá de su comunidad de Austin.

«Este financiamiento de la subvención comunitaria asegura que las clases puedan ofrecerse de manera regular, proporcionando confiabilidad y continuidad. Esta estabilidad es esencial para construir confianza y compromiso a largo plazo», dijo Sara.

Como resultado, el programa ha alcanzado a miles de personas alrededor del mundo que de otra manera no habrían tenido acceso a rutinas de ejercicio específicas para la EP en español.

Al enfocar intencionalmente los recursos en una comunidad específica y desatendida, Sara y su equipo alinearon su programación con las necesidades culturales y lingüísticas de los participantes, eliminando las barreras del idioma que a menudo limitan el acceso a la atención basada en evidencia para la EP. Este enfoque permite que el contenido esté disponible, sea accesible y relevante.

Conozca al Dr. Jose Cabassa: proporcionando programas comunitarios gratuitos de boxeo en NYC

Conozca al Dr. Jose Cabassa

En Nueva York, el Dr. Jose Cabassa, fundador de Moving Brains Foundation, ofrece una clase de ejercicio presencial gratuita semanal en un gimnasio de boxeo profesional para ayudar a quienes conviven con la EP a incorporar el ejercicio como parte de su plan de tratamiento.

«El financiamiento de la subvención comunitaria de la Parkinson's Foundation nos ayuda a alcanzar a la comunidad latina y proporcionar recursos en inglés y español, haciendo que la información sea más accesible. Esto es especialmente importante en estructuras familiares complejas, donde la generación mayor con la EP puede comprender mejor en español, mientras que la misma información puede ser más accesible para sus hijos en inglés», dijo el Dr. Cabassa.

El financiamiento de la subvención comunitaria permitió promover estas clases en Harlem, Washington Heights y el Bronx en NY, donde viven más de 1 millón de latinos. La subvención también fomentó colaboraciones con otros beneficiarios de subvenciones con el objetivo de mejorar las vidas de las personas en su comunidad.

«¡No espere para comenzar! ¡Hágalo! Aunque los programas de ejercicio pueden ofrecer una variedad de enfoques, el primer obstáculo para incorporar el ejercicio como tratamiento es la constancia», dijo el Dr. Cabassa, alentando a las personas a unirse a un programa local de la EP.

Cómo encontrar un programa comunitario

Gracias a la dedicación de los participantes de la subvención comunitaria, las comunidades de habla hispana con la EP en todo el país están obteniendo mejor acceso a educación, ejercicio y apoyo.

Estos cinco beneficiarios de la subvención comunitaria están derribando barreras, construyendo conexiones y empoderando a las personas y sus familias para vivir bien con el Parkinson.

Ya sea que usted conviva con la EP o esté apoyando a un ser querido, hay programas disponibles para satisfacer sus necesidades.

Para obtener ayuda para encontrar un programa cerca de usted, llame a nuestra Línea de Ayuda al 1-800-473-4636, opción 3 para español. 

My PD Story

Patricia Moncure
People with PD

Patricia Moncure

It was suggested that I might have Parkinson’s disease (PD) in August 2018 after spending a full year wondering what was wrong with me.

Before that moment, I had seen one primary care physician, three podiatrists, two neurologists and a neurosurgeon… not necessarily in that order. When the second neurologist finally said, “It could be Parkinson’s,” I cried.

But they weren’t tears of fear, they were tears of relief.

For the first time, I had confirmation that I wasn’t imagining things. The cramping in my feet (which had started five years earlier), the aching back, the balance issues, the slow gait — none of it was in my head.

That hadn’t always been the response. The first neurologist I saw laughed when I mentioned I was worried about ALS (Amyotrophic lateral sclerosis), and told me I was “fine,” diagnosing me with carpal tunnel. I smiled, nodded and left, but I wasn’t comforted. I knew something wasn’t right. So, I kept searching.

When Parkinson’s was suggested, the second neurologist explained that the only way to know for sure was to try Carbidopa/Levodopa and if it worked, that would be our answer. It sounded crazy. What was even crazier was waiting three months to get the prescription.

Looking back, I wish I hadn’t gone to that appointment alone. An advocate might have asked the questions I didn’t know to ask.

I kept searching for answers. Because I’m claustrophobic, I couldn’t do a traditional MRI, so I tracked down a “stand-up” MRI. I sat on a bench, helmet on my head, watching an episode of Law & Order: SVU while the scan was done. The results? Inconclusive.

Still, I told almost everyone I met that I had Parkinson’s. I needed to say it out loud to make it real.

Through a connection, I started physical therapy. Several times a week, I worked on the treadmill, balance exercises, and walking on uneven ground. My therapist, Jason, was kind and patient. One day, while struggling with a simple exercise, I broke down in tears. He quietly led me to a back room so I could cry in private. I never forgot that moment of compassion.

Eventually, I had to pause therapy for work travel — and then for foot surgery. A podiatrist diagnosed me with hammer toe and assured me surgery would fix the cramping and rolling in my foot. It didn’t. The surgery, where all but my big toe on my left foot were broken and repaired was one of the most painful experiences of my life. And I’ve had three children.

A week before that surgery, I finally received my prescription. Relief didn’t come all at once, but it came. Slowly, steadily, I began to feel better.

Every day is a balancing act — managing hydration, low blood pressure, anxiety, vivid dreams. I’m constantly learning, adjusting, and searching for ways to make life more manageable.

The Parkinson’s Foundation has been a lifeline for me. Offerings like the Mindfulness Monday Series provides coping skills and helped me discover a real sense of community.

Three years ago, I had an idea for a podcast: Sick As Your Secrets. I recorded one episode — 20 takes later, I realized how hard it is to speak into the void alone. About a month ago, I decided to try again.

This podcast is part personal journey, part shared space — where I tell my story and invite others to tell theirs. My goal is simple: to help, to guide, or even just to let someone know they’re not alone. So… here we go.

Explore the Parkinson’s Foundation podcast, Substantial Matters, as we interview PD experts on the issues that matter most to the PD community — from ongoing research to nutrition and mental health.

Fact Sheets

How to Add Palliative Care to Your Parkinson's Plan

Palliative care is extra support for anyone living with a serious illness, such as Parkinson’s. It helps manage symptoms and supports emotional well-being. The goal is to improve quality of life for you and your care partners.

Palliative care can help you:

  • Manage difficult symptoms such as pain, anxiety and constipation

  • Cope with the stress and emotional impact of illness

  • Support your care partner with education and counseling

  • Plan for future care and make decisions as your needs change

How does palliative care work?

Palliative care can be part of your regular care. In some settings, it involves a specialized team that may include nurses, social workers, chaplains and other health professionals. It often starts with a conversation about what matters most to you, followed by a plan to address those needs. It does not replace your current treatment.

When should I get palliative care?

Palliative care can be helpful at any stage of Parkinson’s, even soon after diagnosis. You might consider palliative care if symptoms are hard to manage, daily life feels overwhelming or you want help planning ahead. It is not limited to hospice or end-of-life care.

How can I get palliative care?

  • Ask about palliative care at your next medical visit. If you are in the hospital, in rehabilitation or receiving home health services, ask if palliative care is available.

  • Visit www.getpalliativecare.org to find services near you. Many palliative care agencies offer support at any stage of illness.

Will my insurance cover palliative care?

Medicare typically covers many palliative care services. Coverage through Medicaid and private insurance depends on your state and your plan. Check with your insurance company.

What if there are no palliative care services where I live?

Palliative care services are growing, but they may not be available in every area. You and your care team can still work together to focus on your comfort, emotional support and quality of life.

If you don't have palliative care services near you, here are four ways to advocate for more supportive PD care:

1. Manage symptoms

  • Prepare for Parkinson's appointments. Before each visit, identify the three things that matter most to you to discuss with your care team.

  • Ask for referrals to specialists. If certain symptoms are hard to manage, ask for a referral to a specialist with expertise in that area.

2. Support care partners

  • Work as a team. Share emotional and physical challenges. Learn about Parkinson’s and caregiving together. Talk with your care team and support network about help you may need now and in the future.

3. Care for emotional or spiritual health

  • Reach out to others. Talk with a support group, counselor, spiritual advisor or trusted friend. These relationships can provide a safe space to share and help you cope with Parkinson’s.

4. Plan for future care

  • Think ahead. Reach out to others. Talk with a support group, counselor, spiritual advisor or trusted friend. These relationships can provide a safe space to share and help you cope with Parkinson’s.

  • Document your choices. Complete advanced care directives, such as a healthcare proxy or living will to make your wishes known if you cannot speak for yourself.

My PD Story

Steve and Lisa Fischlin
People with PD

Steve and Lisa Fischlin

Steve Fischlin’s journey with Parkinson’s disease (PD) started with a tremor in his foot, followed by his right arm not swinging while he walked. His next symptom was a stoic expression that left his wife, Lisa, asking if he wasn’t having fun — she noticed he wasn’t smiling. Two appointments with different neurologists and a series of tests confirmed Steve had PD and left him and his family with more questions than answers.

One thing Steve did know was that exercise is proven to help ease Parkinson’s symptoms, so he got moving.

“That first year he was walking every day,” Lisa said. “Rain or shine, he went out walking. His friends at work made sure he walked during his lunch hour. We walked together, our neighbor walked with him, it was a consistent routine.”

All this walking made Steve and Lisa wonder if there was a race or walk that supported the Parkinson’s community, which led them to Moving Day, A Walk for Parkinson’s.

“We immediately got on the committee and started making connections,” Lisa said. “We were both working at the time and had a fairly large Moving Day team, and we were one of the top fundraising teams for the last four or five years for Sacramento. It was a great way for all of us to come together and support Steve and his diagnosis.”

Steve retired in 2020 to focus on his health, and Lisa joined him when she retired in 2023. They wanted to dive deeper into the Parkinson’s community and became members of the Parkinson’s Foundation California Chapter Board. They continued fundraising for Moving Day, but they wanted to do more.

They created the non-profit, FISCH 4 Parkinson’s, a Steven J. Fischlin Charity, dedicated to raising awareness and supporting people with Parkinson’s. They launched a signature fundraising event through the non-profit, the annual FISCH 4 Parkinson’s Golf Tournament. The first tournament, held in August 2024, raised more than $26,000, which they donated to the Parkinson’s Foundation. The event returned in August 2025, raising $35,000 to support the Foundation.

“In the second year we were able to expand the tournament, get sponsorships and really reach out to the wider Parkinson’s community beyond our family and friends,” Lisa said. “It took some time to explain what we were trying to accomplish, and for Steve to feel comfortable telling his story and making connections.”

This tournament has helped Steve and Lisa support the Parkinson’s Foundation and has helped them create their own support network of people near them in the Parkinson’s community.

Steve and Lisa with friends at the 2025 FISCH 4 Parkinson’s Golf Tournament
Parkinson’s Foundation friends at the 2025 FISCH 4 Parkinson’s Golf Tournament, including Vikas Chinnan, Donna Cline and Jeff Bell.

“Last year we had several golfers at the tournament who had Parkinson’s,” Steve said. “Now we meet up with them and their wives three or four times a year. We get dinner and catch up and talk about how we’re doing and things about Parkinson’s we can all relate to. We’re always trying to find more people to join our group.”

Steve and Lisa are passionate about supporting the Parkinson’s Foundation because of the resources and information they have received.

“When you find out you or a loved one has Parkinson’s, you have to just start digging in and learning about it,” Lisa said. “We use the Parkinson’s Foundation website, attend webinars and Steve participated in PD GENEration because his kids were wondering if this was something they could be passed down.”

“The Foundation doesn’t just support people with Parkinson’s, it supports the whole family and care partners, and that’s so important.” - Lisa

Steve and Lisa have also found a great deal of support through the University of California (UC) Davis Health Center for Movement Disorders & Neurorestoration, a Parkinson’s Foundation Center of Excellence. In 2024, the center opened a multidisciplinary clinic that brings together care providers from several specialties, including neurology, speech therapy, physical therapy, nutrition and more.

“To be able to have one stop and ask all these experts questions and find support is incredible,” Lisa said. “We’ve made really strong connections through UC Davis, and we’re able to talk to them throughout the year. This clinic is possible because of the Parkinson’s Foundation, and it makes us feel like we are never alone.”

The next FISCH 4 Parkinson’s golf tournament is scheduled for August 10, 2026 at Catta Verdera Country Club in Lincoln, CA. Steve and Lisa’s goal is to raise $40,000 this year, and are excited that 100% of the money will go to the Parkinson’s Foundation, with 50% going to the multidisciplinary clinic they have found so much support through.

“Right now, the multidisciplinary clinic is only open on Tuesdays, and it runs on donation, so we want to make a difference and support it,” Lisa said. “We’re proud to support the Parkinson’s Foundation and everything it does for people with Parkinson’s, while also supporting this resource right in our own community. We want to be loud about this disease, share our story and raise money to find better treatments and a cure.”

“I’ve met other people who have Parkinson’s, and I will always talk to anyone about it,” Steve said. “It’s a small world and we want to meet with people, do whatever we can to help. We want to talk about it, and we want to help find a cure.”

Create your own Parkinson’s fundraiser! Visit Parkinson.org/DIY to get started.

Raise Awareness

People with Parkinson’s Share What’s Helped Them

🧠 What will you learn in this article?

This article shares real experiences from people living with Parkinson’s and highlights what helps them maintain quality of life. It highlights how:

  • Staying physically active and mentally engaged can improve movement, mood and cognitive function.

  • A positive mindset and sense of purpose help people cope with challenges and live more fully.

  • Building community and support systems reduces isolation and provides encouragement.

  • Learning about Parkinson’s empowers individuals to better understand symptoms and manage their care.

We asked out social media community what helps them live well with Parkinson's

Parkinson’s disease (PD) looks different for everyone. Symptoms vary, as do the ways people maintain and improve their quality of life. People with Parkinson’s often discover strategies that work best for them, whether it’s staying physically active, keeping mentally engaged, connecting with others or practicing gratitude.

The Parkinson’s Foundation offers a wide range of resources to help people manage their symptoms. Additionally, some of the most meaningful insights come from those living with Parkinson’s themselves.

We asked our social media community to share what has helped them live well with Parkinson’s. Here’s what they had to say:

Exercise and Movement

Staying physically active was one of the most popular strategies. Research shows that regular exercise can improve mobility, balance, mood and even cognitive function for people living with Parkinson’s. Many described movement not just as therapy, but as empowerment.

“Exercise and staying mentally active have helped me the most. I was diagnosed in 2018. Don’t give up. Sometimes I have to force myself to exercise, but I always feel better when I do.” - Val

“I was diagnosed at age 75 and I plan on being here for a long time. I exercise every day, walk a couple of miles, take my medication and listen to my doctor.” - Frank

“A dance class called Dance Health Alliance has helped me a lot. You can even do it sitting in a chair if you have balance issues. It’s definitely helped improve my walking.” - Christine

Exercise at home with our PD Health@Home Fitness Friday videos. Sign up for our next live Fitness Friday or check out our On-Demand videos right now.

Mental Engagement and Hobbies

Keeping the brain active can be just as important as keeping the body moving. Engaging in hobbies, learning new skills and staying mentally stimulated may support cognitive health and overall well-being.

For many, creative expression and intellectual engagement provide both joy and a sense of purpose.

“Learning new tunes and staying musically active has been a real benefit. I’ve been a professional musician for over 50 years and staying active in my music career — even at age 71 — has helped keep my Parkinson’s under control.” - Joe

“I write short stories, read, belong to a book club and take part in quizzes.” - Val

Mindset, Hope and Perspective

A positive outlook doesn’t erase the challenges of Parkinson’s — but many people shared that mindset plays a powerful role in how they navigate them.

“I was diagnosed 25 years ago, in my 40s and I’m now in my 70s. Focus on what you still have. If you have love, learning and laughter — even a friendly phone call or a good book — you are lucky.” - Fillis

“What truly helped me was hope with purpose. When I stopped seeing Parkinson’s as an ending and started seeing it as a teacher, everything changed. Healing isn’t just about the body — it’s about the mind, heart and spirit working together.” - Ellen

“After my diagnosis, I started learning about Parkinson’s and its treatments. I’ve learned to accept it, appreciate the small blessings, exercise, take my medication as prescribed and live with a positive attitude.” - Daisy

These reflections remind us that resilience can take many forms, including acceptance, gratitude, determination or simply continuing forward one day at a time.

Community and Support

Connecting with others who understand Parkinson’s can reduce isolation and provide encouragement. A strong online or in-person support network often makes a meaningful difference.

“As a woman in my 30s with young-onset Parkinson’s, community has helped me the most. Exercise is second and reading The Parkinson’s Plan has also been incredibly helpful.” - Erin

“Joining the Facebook group Life With Parkinson’s and accessing resources like yours has been extremely helpful. I also participated in an eight-week class for the newly diagnosed through my local hospital.” - Lin 

Many people living with Parkinson’s find that sharing experiences, learning together and supporting one another strengthens both confidence and quality of life.

Explore our Community Network groups that empower key groups within the PD community — including people who are newly diagnosed, women with PD, those with early-onset PD and more! Find your community.

Learning about PD

Learning more about Parkinson’s can bring clarity, reassurance and empowerment. Understanding movement and non-movement symptoms can help people feel more in control of their care.

“Education has helped me so much. I didn’t realize many of my symptoms were part of Parkinson’s. Learning about the disease helped me understand that I’m not crazy. Physical therapy has also made a huge difference.” - Sharon

When people understand what is happening in their brain and bodies, it can ease uncertainty and make it easier to advocate for the care they need.

Explore Parkinson’s resources that address your most concerning symptoms right now.

Living Well with Parkinson’s

Living well with Parkinson’s does not mean symptoms disappear — it means finding tools, support and perspective that help you move forward.

As these shared experiences show, there is no single path. What works for one person may look different for another, and that’s okay.

If you’re looking for support, resources or ways to connect, we are here to help. Explore resources and information at Parkinson.org or contact our Helpline at 1-800-4PD-INFO (1-800-473-4636).

My PD Story

Ken Chason at a restaurant outside
People with PD

Ken Chason

In April 2023, shortly after turning 56, I was diagnosed with Parkinson’s disease (PD). At the time, I was immersed in a demanding career and didn’t have time for Parkinson’s. Wasn’t there a pill or a shot to make it go away? Well, no. I didn’t immediately accept that I was on a journey — I had a lot to learn.

Looking back, I’d been on that journey for years without realizing it. About five years before my diagnosis, my handwriting grew smaller and messier. I couldn’t hold a pen quite right. I googled it: “classic symptom of Parkinson’s.” No way, I thought. I dismissed it.

Not long after, I began to feel “off” — a kind of baseline anxiety that didn’t feel like regular stress. That eventually passed with treatment. Then, while walking one day, I noticed my left arm just hanging there. Wasn’t it supposed to swing? I checked again: “classic symptom of Parkinson’s.” Still, I pushed it aside. I was too young, I told myself.

Then came a twitchy thumb. A foot tremor. I finally asked my primary care doctor, “Could this be Parkinson’s?” The response: “Possible, but not likely.”

When the tremor worsened, I was referred to a movement disorders specialist (a neurologist with specialized training in Parkinson’s and movement disorders). After an exam and a DaTscan, I had my answer. It was Parkinson’s.

What next? I turned to the Parkinson’s Foundation to bridge the gap between diagnosis and this unexpected detour in life.

Its library of resources helped me better understand this complex, often misunderstood disease. The Helpline was invaluable. I joined a local support group and connected with others online, learning from their experiences and offering my own.

Two years into this journey, what advice would I give? First, don’t go at it alone. Learn everything you can and connect with others. Next, exercise — early and often. And finally, don’t ignore the little signs. That left arm might be trying to tell you something.

Learn the 10 early signs of Parkinson’s and What To Do After You Notice Parkinson’s Symptoms.

Videos & Webinars

Understanding Cognition & Thinking Changes in Parkinson’s

March 19, 2026

Changes in memory, attention, and problem-solving are common non-motor symptoms of Parkinson’s that can affect daily life, relationships, and independence. In this webinar, we’ll explore how Parkinson’s impacts cognitive function and what veterans and care partners can do to recognize, manage, and adapt to these changes. We'll also discuss when to seek additional support, how the VA addresses cognitive health, and which tools and therapies may help maintain brain function and quality of life. 

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Presenters

Anita Sim, PhD 
Neuropsychologist, Minneapolis VA Health Care System  

Christy Becker, MA, CCC-SLP 
Speech-Language Pathologist, Minneapolis VA Health Care System

Konner Kielman, OTD, OTR/L, LSVT BIG Certified 
PD/MD Staff Occupational Therapist, Minneapolis VA Health Care System

My PD Story

Kim on a ladder on a mountain
People with PD

Kim Lundgreen

My name is Kim Lundgreen. I just turned 68. I was diagnosed with Parkinson’s disease (PD) in 2017 at the University of Utah’s Movement Disorder Clinic, a Parkinson’s Foundation Center of Excellence, in Salt Lake City. I remember thinking, “What a strange name for a place.”

My wife, Mindy, was 50 at the time. She cried when we heard the diagnosis. I was stunned. Shocked. 

Prior to my diagnosis, running was more than exercise. It was my therapy, my prayer time, personal solitude time, my way of solving the world’s problems. I was an ultramarathon runner with nearly 50 marathons and ultramarathons under my belt. I ran the St. George Marathon 25 years in a row. I once beat ultramarathon legend Dean Karnazes at the finish line there during his famous 50/50/50 tour. That moment qualified me to run Boston two years later.

When I received the diagnosis, my first reaction was dramatic but honest: “If I can’t run anymore, I’ll go to Yosemite and base jump off El Capitan without a parachute.” That’s how much running meant to me.

Parkinson’s had forced me to stop running altogether. Symptoms like rigidity (stifffness), cramping and neuropathy made training nearly impossible.

Then, last June (after Cassie Webster, my Rock Steady Boxing coach kept encouraging me for years to try) I completed the Logan Peak Trail Run with a right sprained ankle, an ultra-distance race of 28 miles with over 7,000 feet of elevation gain with virtually no training. It was my first race in five years.

I fought my way back.

A news article in the Herald Journal highlighted the run. KSL News out of Salt Lake City, after getting wind of my seemingly impossible feat, covered my successful summit of the Middle Teton via the Southwest Couloir, which I achieved just a couple weeks prior. We climbed at night with headlamps, ice axes and micro-spikes. My “soul brother” David Toone saved my life more than once on that descent as my symptoms kicked in. Exhaustion, vertigo and total fatigue set in hard.

Throughout everything, I needed information about Parkinson’s and I found on Parkinson.org — I love the website and it has been very helpful for me.

Kim with his wife Mindy

Two years after my diagnosis, in the fall of 2018, Mindy received devastating news of her own: serious ovarian cancer. We had no warning, and the shock was overwhelming. Suddenly, we were both facing life-threatening diseases, and the reality of our situation hit hard. We both wept when Mindy’s doctor gave us the grim news while we were shopping together.

In that moment, I felt a heavy burden of responsibility. I had to be strong for Mindy, and I also had to manage my own Parkinson’s. We were both in for the fight of our lives.

Mindy was only 52, and I had just turned 62. Our dreams for our golden years felt shattered. I remember lying awake that night, overwhelmed by a sense of doom. I prayed to God, “Why now? Isn’t Parkinson’s enough for us?”

I lost Mindy, my beautiful wife of 23 years, in 2024 to ovarian cancer after a brutal five-year fight. She was only 57. We were both strong, active and healthy. We mountain biked, ran trails, paddle-boarded, lifted weights, practiced yoga and stayed committed to our physical and spiritual health. 

Experiencing loss with Parkinson’s is horrible, however movement and exercise — especially weight-lifting, trail running combined with my Rock Steady Boxing now — are so vital for me in providing hope and light each new day!

A few months ago I spoke to the Salt Lake City support group alongside the doctors from University of Utah neurology, a Parkinson’s Foundation Center of Excellence, and that was very powerful for me and for the audience. It was a win-win.

Parkinson’s disease is relentless. The only real weapon against Parkinson’s is movement. Exercise, especially strength training and cardio, has been shown to slow the progression of the disease.

I’ve made intense exercise a daily part of my routine, seven days a week. It’s the “silver bullet” that keeps me fighting, and I’m convinced it’s the key to maintaining a good quality of life while living with PD.  Also, it is so helpful to me in coping with Mindy’s death.

Now, I carry her with me through every climb, every run, and every battle with Parkinson’s.

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.

My PD Story

Donna Parkhurst headshot
People with PD

Donna Parkhurst

Parkinson’s disease (PD) entered my life long before my own diagnosis. Not too many years ago, I walked the caregiving journey alongside my mother as she lived with Parkinson’s and eventually passed away from its complications. Watching someone you love face the progression of this disease is heartbreaking, and it gave me a deep respect for both the strength of people living with Parkinson’s and the quiet resilience of caregivers.

Because of that experience, when I was diagnosed with Parkinson’s myself, it felt surreal. Suddenly I was no longer just the caregiver. I was the patient.

Like many people newly diagnosed, I had to face the uncertainty that comes with Parkinson’s. Some days I function very well, but there is always the question in the background: what will the future look like? Learning to live with that uncertainty has been one of the biggest challenges.

Another realization was that Parkinson’s is about far more than tremors or movement. Many symptoms are invisible — fatigue, anxiety, brain fog, sleep disruption, constipation and stress sensitivity. These symptoms can affect daily life in ways that others may not see or fully understand.

What has helped me most is focusing on the things I can control. Staying active, managing stress, prioritizing healthy habits, and leaning on supportive relationships have all played an important role in how I live with Parkinson’s today.

I’m incredibly grateful for a loving and supportive husband and family who walk alongside me on this journey.

One unexpected gift of this diagnosis has been the opportunity to connect with others in the Parkinson’s community. I began sharing my experiences online to bring awareness to both the visible and invisible aspects of Parkinson’s. What I discovered is that many people living with Parkinson’s — and their caregivers — simply want to feel seen, heard and understood.

Those conversations have become deeply meaningful to me. If sharing my story helps even one person feel less alone, better informed, or more hopeful, then something good is coming from this difficult diagnosis.

Participating in research has also become important to me. I enrolled in PD GENEration, the Parkinson’s Foundation genetic study. The process was extremely straightforward — easy, painless and honestly very impressive in how they carried out the entire experience.

Participating made me feel seen and valued, and I felt honored to contribute to research that may help others in the future. I was also relieved to learn that I do not carry a known genetic component to pass on to my children.

This was my first time participating in a Parkinson’s research study, but it won’t be my last. I’m very open to participating in future studies whenever possible. I also shared my genetic results with my family.

What keeps me hopeful is the resilience of the Parkinson’s community and the progress being made in research and treatment. Organizations like the Parkinson’s Foundation play an essential role by providing trusted education, resources, and advocacy that empower people living with Parkinson’s and their families.

If I could give advice to someone newly diagnosed, it would be this: take a deep breath. Parkinson’s looks different for everyone, and many people live well for decades. Stay active, build a strong care team, and stay connected to others who understand the journey.

Parkinson’s has changed parts of my life, but it has also deepened my sense of purpose. Today, I try to use my voice to raise awareness, encourage others living with Parkinson’s, and remind people that even in the face of uncertainty, there is still life to be lived, community to be found, and hope to hold onto.

Explore ways to get involved with Parkinson’s research today. Visit our Join A Study page and learn more about PD GENEration, the Parkinson’s Foundation genetics study that offers genetic testing and counseling at no cost to participants.

Advancing Research

Neuro Talk: Stigma and Parkinson’s

As a movement disorders specialist, one issue that people with Parkinson’s disease (PD) often bring up to Sneha Mantri, MD, during office visits is stigma. Stigma stems from stereotypes and lack of understanding that can lead to judgment, delayed diagnosis, isolation and feelings of shame for people with Parkinson’s and chronic diseases.

In our latest Neuro Talk, Dr. Mantri, Chief Medical Officer of the Parkinson’s Foundation, highlights the stigma that can accompany living with Parkinson’s and how it is being researched. Dr. Mantri and the Parkinson’s Foundation believe that combatting stigma through education, storytelling and awareness efforts can help the greater PD community. Dr. Mantri highlights what stigma looks like for people with PD, research findings surrounding stigma and ways to combat it.

What is stigma?  

Stigma is when a person or group is judged or treated unfairly because of a negative belief or stereotype about them. Stigma is associated with stereotypes, prejudice, discrimination and exclusion. Experiencing stigma can significantly impact the lives of people living with Parkinson’s and care partners.

What does stigma look like for people with Parkinson’s?

Stigma around Parkinson’s often begins with misunderstanding. Stereotypes ignore the reality that people of all backgrounds — men and women — live with PD. Visible symptoms like tremors, freezing of gait or speech issues can be misread as intoxication or aging, rather than signs of a complex neurological condition. These reactions can be hurtful and isolating.

Many people with Parkinson’s internalize stigma, leading to delaying treatment, hiding symptoms or their diagnosis out of embarrassment or shame. In the workplace, stigma can fuel fear of being seen as less capable (learn more about employment with Parkinson’s). It can also show up as fear of becoming a burden to loved ones. Acknowledging these experiences is a critical step toward breaking down stigma.

Research Findings Surrounding PD and stigma

Stigma worsens quality of life for people with Parkinson’s. Researching stigma is critical, as bringing academic attention to the topic is critical to addressing it. Research has found that stigma:

  • Shapes the PD experience.
  • Contributes to social anxiety, isolation, hesitation to seek medical care, loneliness and emotional distress.
  • Misconceptions and bias lead to people with Parkinson’s being stereotyped, devalued or even avoided. This, and worsening symptoms over time, can lead to self-stigma, impacting self-esteem and depression.
  • Many people with Parkinson’s have experienced a form of stigma.
  • Stigma can take many forms. Felt stigma is when someone believes others see them negatively.
  • Care partners may experience affiliated stigma, facing bias because they are connected to a person with Parkinson’s.

For doctors and healthcare professionals, understanding stigma’s impact can help them respond with greater empathy and more proactive care strategies. This is crucial people with Parkinson’s and care partners, who often experience their own forms of stress and social isolation.

Ways to Combat Stigma

One of the most powerful ways to reduce stigma is through education and staying connected. The Parkinson’s Foundation works to share information about Parkinson’s to help spread awareness and knowledge, breaking down the misconceptions that fuel stigma. Explore Parkinson’s Foundation resources now.

“As a movement disorders specialist, I talk to patients about stigma. Research shows that practicing narrative medicine — using a patient’s story to guide care — helps their care team address the issues that matter most to them. This approach can strengthen independence and reduce stigma.” – Dr. Mantri

Personal stories (including My PD Stories), humanize Parkinson’s and highlight resilience. While community engagement — through events like Moving Day, support groups or exercise classes — helps people feel less alone and build connection.

Everyone can play a role in reducing stigma by knowing the signs of Parkinson’s, volunteering or sharing information to raise awareness.

Watch Dr. Sneha’s latest Neuro Talk and catch up on past topics at Parkinson.org/NeuroTalk.

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