There are many non-motor challenges associated with Parkinson's disease that may not always by easy to discuss. With a focus on cognition and speech, this program will provide strategies for coping and talking about it with healthcare providers or loved ones.
Expert Speakers
Mitesh Lotia, MD
AdventHealth Neuroscience Institute
Jennifer Gelb, MS, CCC-SLP
Speech Language Pathologist
Director of Speech Therapy Services
Lake Centre Rehabilitation
In this session we will talk together about how to build joy into your days, and introduce a joy meditation that you can do sitting quietly or on the go.
In January 2025, the Parkinson’s Foundation asked people living with Parkinson’s disease (PD) and those impacted by it: “What matters most to you?”
The results of our 2025 State of the Community Survey provide valuable feedback to guide Parkinson’s Foundation initiatives, goals and priorities. These results will help us focus on the most important issues for people with PD, their families and anyone impacted by PD.
The survey, available in English and Spanish, was shaped with input from four people living with PD to help ensure the questions reflected the community’s voices.
Below, we highlight your top concerns based on survey responses:
1. Top concerns about PD include symptoms, planning for the future and medications.
Survey participants shared their top concerns about Parkinson’s: movement symptoms, non-movement symptoms, planning for the future and medications. These topics will guide us as we develop educational materials and resources that are meaningful and relevant to the PD community.
Key Takeaway: Nearly half (42%) of participants reported movement and non-movement symptoms as top concerns.
We recognize that the PD community’s priorities may change over time, so we will continue to create and update our educational materials and resources to meet their evolving needs. Learn how to recognize common movement and non-movement symptoms of Parkinson’s, and manage them using different treatment options.
2. Most participants spent 15-30 minutes talking directly with their PD doctor.
On average, survey participants said they spent 15-30 minutes talking directly with their doctor during an appointment. Bringing a list of questions and concerns can help optimize your time during the visit.
Key Takeaways:
57% spend 15-30 minutes directly talking to their PD doctor during a visit.
74% bring a list of topics to discuss.
23% reported receiving emergency care or being hospitalized in 2024.
We understand that medical appointments can feel overwhelming, so we want to equip our PD community with tools to feel empowered to advocate for themselves and their loved ones during a visit. Check out our Hospital Safety Guide to help prepare for and navigate a hospital stay, and learn how to make the most of your Parkinson’s care.
3. Participation in PD research and PD GENEration: Mapping the Future of Parkinson’s Disease.
Research plays an essential role in understanding the causes of PD, developing new treatments, improving care, and ultimately finding a cure. However, many survey participants shared that they have not yet taken part in a PD clinical trial or research study.
Key Takeaway:72% have not participated in a PD clinical trial or research study.
“The only path to new drugs for Parkinson’s is through clinical trials — and the crucial element needed to power those trials is the person with Parkinson’s. The more people with PD who are willing to engage in clinical trials, the faster we can move towards new treatments.” - James Beck, PhD, Parkinson’s Foundation Chief Scientific Officer
PD GENEration: Mapping the Future of Parkinson’s Disease, is our global research study that offers genetic testing and counseling for people with Parkinson’s. Although many survey participants said they have not taken part in a PD research study, almost half have heard about PD GENEration. Of those, 44% reported participating in the study.
Key Takeaways:
49% have heard about PD GENEration.
44% have participated in the study.
We know there is still work to do in educating the community about recognizing research studies, including PD GENEration, and understanding the benefits of participating in research.
These survey findings will guide our efforts to offer more education and create opportunities for people to learn about and take part in research. Get involved in Parkinson’s research today. Visit our Join A Study page or enroll in PD GENEration today.
Next Steps
The Parkinson’s Foundation remains committed to listening and responding to the needs and priorities of the Parkinson’s community. We will continue our mission to make life better for anyone affected by PD.
We acknowledge that survey responses may not reflect the opinions or experiences of everyone in the PD community. We are building on our commitment to making resources and information accessible to all people living with PD by gathering feedback across multiple platforms. Explore more Parkinson’s Foundation survey findings on our Survey Data page.
Resources Designed to Help
Explore the Parkinson’s Foundation most popular resources:
Conclusiones de nuestra última encuesta comunitaria
En enero de 2025, la Parkinson's Foundation preguntó a las personas que viven con la enfermedad de Parkinson (EP) y a quienes impacta: "¿Qué es lo que más le importa?"
Los resultados de nuestra Encuesta acerca del estado de la comunidad 2025 proporcionan información valiosa para guiar las iniciativas, los objetivos y las prioridades de la Parkinson’s Foundation. Estos resultados nos ayudarán a enfocarnos en las cuestiones más importantes para las personas con la EP, sus familias y cualquier persona afectada por la EP.
La encuesta, disponible tanto en inglés como en español, se elaboró con la aportación de cuatro personas que viven con la EP para ayudar a garantizar que las preguntas reflejaran las voces de la comunidad.
Reconocemos que las respuestas a la encuesta pueden no reflejar las opiniones o experiencias de todos los miembros de la comunidad de la EP. Estamos reforzando nuestro compromiso de hacer que los recursos y la información sean accesibles para todas las personas que viven con la EP mediante la recopilación de comentarios a través de múltiples plataformas.
1. Las principales inquietudes acerca de la EP incluyen los síntomas, encontrar recursos locales para la EP y vivir con la EP.
Los participantes en la encuesta compartieron sus principales inquietudes acerca del Parkinson: los síntomas motores, los síntomas no motores, encontrar recursos locales para la EP y aprender a vivir con la EP. Estos temas nos guiarán al desarrollar materiales y recursos educativos que sean significativos y relevantes para la comunidad hispanohablante de la EP.
Punto clave: Un 37% declaró que los síntomas motores y no motores son sus principales inquietudes.
Sabemos que las prioridades de la comunidad de la EP pueden cambiar con el tiempo, por lo que seguiremos creando y actualizando nuestros materiales y recursos educativos para satisfacer sus necesidades cambiantes. Aprenda a reconocer los síntomas motores y no motores del Parkinson y recursospara obtener el apoyo que necesita.
2. La mayoría pasa entre 15 y 30 minutos hablando directamente con su médico de la EP.
En promedio, los participantes en la encuesta dijeron que pasaban entre 15 y 30 minutos hablando directamente con su médico durante una cita. Llevar una lista de preguntas e inquietudes puede ayudarle a optimizar su tiempo durante la visita.
Puntos clave:
Un 54% pasa entre 15 y 30 minutos hablando directamente con su médico de la EP durante una visita.
Un 54% lleva una lista de temas que discutir.
Un 13% declaró haber recibido atención de urgencia o haber sido hospitalizado en 2024.
Entendemos que las citas médicas pueden resultar abrumadoras, por lo que queremos dar a nuestra comunidad de la EP herramientas para que se sientan empoderados para abogar por sí mismos y por sus seres queridos durante la consulta. Vea nuestra Guía de seguridad hospitalaria para ayudarle a prepararse para una estancia hospitalaria y navegarla y aprenda a aprovechar al máximo sus cuidados para el Parkinson.
3. Participación en la investigación de la EP y PD GENEration: Trazando el futuro de la enfermedad de Parkinson (PD GENEration: Mapping the Future of Parkinson’s Disease).
La investigación juega un papel esencial para entender las causas de la EP, desarrollar nuevos tratamientos, mejorar la atención y, finalmente, encontrar una cura. Sin embargo, muchos participantes en la encuesta mencionaron que aún no habían participado en ningún ensayo clínico o estudio de investigación de la EP.
Punto clave: Un 86% no ha participado en ningún ensayo clínico o estudio de investigación de la EP.
"El único camino hacia nuevos medicamentos para el Parkinson es a través de ensayos clínicos; y el elemento crucial necesario para impulsar esos ensayos es la persona con Parkinson. Mientras más personas con la EP estén dispuestas a participar en ensayos clínicos, más rápido podremos avanzar hacia nuevos tratamientos". - Dr. James Beck, director científico de la Parkinson’s Foundation.
PD GENEration: Trazando el futuro de la enfermedad de Parkinson (PD GENEration: Mapping the Future of Parkinson’s Disease) es nuestro estudio de investigación global que ofrece pruebas genéticas y asesoramiento para personas con Parkinson. Aunque muchos participantes en la encuesta dijeron que no han participado en un estudio de investigación de la EP, un 23% ha oído hablar de PD GENEration. De éstos, un 34% declaró haber participado en el estudio.
Puntos clave:
Un 23% ha oído hablar de PD GENEration.
Un 34% ha participado en el estudio.
Sabemos que aún queda trabajo por hacer para educar a la comunidad acerca de reconocer los estudios de investigación, incluyendo a PD GENErationy comprender los beneficios de participar en la investigación.
Estos hallazgos guiarán nuestros esfuerzos por ofrecer más educación y crear oportunidades para que la gente conozca la investigación y participe en ella. Participe en la investigación del Parkinson hoy. Visite nuestra página Unirse a un ensayo o inscríbase en PD GENEration hoy mismo.
La Parkinson’s Foundation mantiene su compromiso de escuchar y responder a las necesidades y prioridades de la comunidad de Parkinson. Seguiremos con nuestra misión de mejorar la vida de todos los afectados por la EP.
Recursos diseñados para ayudar
Explore los recursos más populares de la Parkinson’s Foundation:
Join the Parkinson’s Foundation in-person or online for the Great Lakes Chapter Parkinson’s Symposium.
Hear about current and upcoming treatments, ongoing research, and resources available in your community to help you live your best life with Parkinson’s.
Speakers
Maggie Caulfield, PhD
Director of Research
Parkinson's Foundation
Amy Mook, MS, MPH, CGC
Certified Genetic Counselor
University of Michigan
Special presentation from the new Kirk Gibson Center and other local resources.
For in-person attendees: In-person check in starts at 10 a.m.
For virtual attendees, via Zoom: The live stream starts at 11 a.m.
There is no charge to attend, but registration is required. This program is open to people with Parkinson's, their family, friends and the community.
This program is in partnership with Michigan Medicine.
In this session we will talk together about how to build joy into your days, and introduce a joy meditation that you can do sitting quietly or on the go.
This session will focus on each of the areas of exercise, recommended by the Parkinson’s Foundation, including cardio, flexibility, agility, coordination, balance, and strength, while participating in an engaging, fun, and powerful exercise session. Exercises included can be incorporate into your daily exercise regimen, with the goal of maximizing safe, functional mobility and delaying the progression of Parkinson’s disease symptoms.
Equipment needed: sturdy chair, water, towel, light dumbbells if available (may also use bottled water or soup cans, if you do not have access to dumbbells)
Instructor
Allison Boshart, Physical Therapist, DPT
PWR! (Parkinson's Wellness Recovery), Delay the Disease, LSVT Big
Instructor of the Premier Parkinson’s Wellness Program at Miami Valley Hospital North
Alec Heffner, AT, CSCS, TSAC-F, TPI F2
Total Health Works Parkinson's
Instructor of the Premier Health Parkinson’s Wellness Program at Miami Valley Hospital North
There is no charge to attend, but registration is required. This program is open to people with Parkinson's, their family, friends, and the community.
In this session we will talk together about how to build joy into your days, and introduce a joy meditation that you can do sitting quietly or on the go.
NeuroBalance™ is Movement Revolution’s comprehensive wellness program designed for individuals at every stage of Parkinson’s Disease. Each session integrates mobility, flexibility, strength, cardiovascular conditioning, and balance training into a single, well-rounded workout.
This whole-body approach supports improved movement quality, better posture, reduced stiffness, and enhanced cardiovascular health — all while promoting neuroplasticity and functional independence. Whether you’re newly diagnosed or managing more advanced symptoms, NeuroBalance™ provides the structure, variety, and expert coaching to keep you moving strong, living well, and staying ahead of Parkinson’s.
Instructor
Eric Johnson,CSCS, CIFT, NES
Founder and CEO, Movement Revolution
Movement Revolution Team
There is no charge to attend, but registration is required. This program is open to people with Parkinson's, their family, friends, and the community.
In this session we will talk together about how to build joy into your days, and introduce a joy meditation that you can do sitting quietly or on the go.
More than 110,000 U.S. veterans living with Parkinson’s disease (PD) receive care through the Department of Veterans Affairs (VA), which offers access to specialized treatment, financial benefits, and dedicated support services. In this webinar, we’ll explore the wide range of resources available to veterans with PD through the VA system, including Parkinson’s Disease Research, Education and Clinical Centers (PADRECCs), affiliated sites, and Veteran Service Organizations (VSOs). Participants will also learn how the Parkinson’s Foundation partners with the VA to provide additional education, tools, and support for veterans and their families.
Speakers
Gretchen Glenn, LCSW
Associate Director of Education
Corporal Michael J. Crescenz VA Medical Center
Philadelphia Parkinson's Disease Research, Education, and Clinical Center
Chair of the National VA Parkinson’s Disease Consortium Education Subcommittee
Helen R. Komninos (McHugh)
NSO Assistant Supervisor
DAV National Service Officer
There is no charge to attend, but registration is required. This program is open to people with Parkinson's, their family, friends, and the community.
The Parkinson's Foundation is proud to partner with U.S. Department of Veterans Affairs to improve the health, well-being and quality of life for veterans with PD.
In this session we will talk together about how to build joy into your days, and introduce a joy meditation that you can do sitting quietly or on the go.
Understanding the role of genetics in Parkinson’s is helping researchers develop new treatments and move closer to a cure. This webinar will review the basics of genetics and Parkinson’s disease (PD) and explore how genetic changes may influence PD risk and how symptoms progress. Learn more about the Parkinson’s Foundation initiative, PD GENEration: Mapping the Future of Parkinson’s Disease, and why participation is helping to improve our understanding of PD and contribute to better care for individuals.
Speakers
Maggie Caulfield, PhD
Director of Research Programs, Parkinson’s Foundation
Allison Dilliott, PhD
Genomics Lead, Clinical Research, Parkinson's Foundation
There is no charge to attend, but registration is required. This program is open to people with Parkinson's, their family, friends, and the community.
In this session we will talk together about how to build joy into your days, and introduce a joy meditation that you can do sitting quietly or on the go.
Exercise and staying active are essential not only for physical health but also for mental and emotional well-being, especially as a veteran living with Parkinson’s disease. This program will address how staying active can positively impact physical symptoms, mood, and overall health. Participants will learn about the benefits of exercise, discover strategies to stay active beyond traditional workouts, and explore meaningful activities that bring joy and purpose.
Hillari Olson, DPT, RYT 200
LSVT BIG®, PWR! Moves® Certified Clinician
Program Coordinator / Physical Therapist
Parkinson's Disease and Movement Disorders Program
Minneapolis VA Health Care System
Emily Hall, LCSW
Southeast PADRECC Senior Social Worker
Central Virginia VA Healthcare System
Konner Kielman, OTD, OTR/L
LSVT BIG® Certified Clinician
Occupational Therapist
Parkinson's Disease and Movement Disorders Program
Minneapolis VA Health Care System
Videos & Webinars
Taking Charge: Strategies for Meaningful Healthcare Visits
May 21, 2025
Navigating Parkinson's disease (PD) requires an active and informed approach to healthcare. This program will encourage individuals living with PD to take charge of their care by providing strategies for effective communication and self-advocacy before, during and after healthcare visits.
Participants will learn how to make the most of each appointment by prioritizing their needs and preparing questions and concerns in advance. Additionally, attendees will gain access to valuable tools and resources from the Parkinson's Foundation to support their journey.
Taylor Rush, PhD
Health Psychologist, Director of Behavioral Services and Interdisciplinary Programs, Center for Neurological Restoration, Cleveland Clinic
Kathleen Blake, MD, MPH
Vice Chair, People with Parkinson's Advisory Council
Muhammad Mahdi Nashatizadeh, MD
Director, Inpatient Movement Disorders
Associate Director, Movement Disorders Fellowship
Clinical Associate Professor, Department of Neurology
University of Kansas School of Medicine
