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.

Ver los resultados de nuestra Encuesta acerca del estado de la comunidad 2025 en inglés.

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 recursos para 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 GENEration y 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:

• Visite Parkinson.org/Espanol

• Suscríbase a nuestros correos electrónicos

• Consulte nuestros recursos impresos y digitales

• Participe en un programa de educación en línea

• Escuche un episodio de podcast

• ¡Síganos en Facebook!

Many people with Parkinson’s disease (PD) use Levodopa, a dopamine-replacement medication, that helps improve quality of life. However, continuous use of levodopa often leads to new movement symptoms called levodopa-induced dyskinesia (LID).

Dyskinesias in Parkinson’s disease are involuntary, erratic movements that can affect different parts of the body. It is estimated that more than 50% of people who take levodopa for PD symptoms develop LID, but the neurological reasons behind this phenomenon are still not well understood.

Jeroen Habets, MD, PhD, a recipient of a Parkinson’s Foundation Postdoctoral Fellowship, seeks to identify brain wave “biomarkers” of LID, highlighting regions of the brain that go awry during LID. Then, his study will use magnetic stimulation therapy to reduce or eliminate LID completely. 

“We are using a noninvasive recording technique to try and understand what happens at the surface of the brain during these periods where patients have dyskinesia,” said Dr. Habets. “We want to better understand what happens when they move involuntarily. We hope to understand better how the whole movement network functions in Parkinson’s disease and specifically this symptom.”

The patterns of neuron activation in the brain used to achieve tasks like movement, memory recall and much more can be observed and measured as brain waves. Different frequencies — the speed and intensity of the patterns — of brain waves are associated with different mental states and activities, such as the slow, calm delta waves of deep sleep or rapid, intense gamma waves of alertness and agitation.

From the lab of Andrea Kühn, MD, at the Charité University Hospital in Berlin, Germany, Dr. Habets uses a machine called a magneto-encephalograph to study participants with PD and visualize the brain wave activity that occurs during bouts of LID. 

By measuring each participant’s brain waves patterns and how they change during LID, Dr. Habets hopes to find regions in the brain that could be a target for treatment. His study will use non-invasive transcranial magnetic stimulation (TMS), which involves using guided magnetic waves to affect brain wave activity. 

Knowing what regions of the brain and which frequencies of brain waves are involved with LID could lead to personalized TMS treatments that alleviate debilitating levodopa side effects.

“During dyskinesia, some processes at the surface of the brain are more active than they should be or than they normally are,” said Dr. Habets. “Previous research showed that if you use magnetic stimulation, which is noninvasive and transmitted through a coil held over the head, you can give magnetic pulses to decrease activity at the surface of the brain and that patients over the hours afterwards developed less dyskinesia.”

Dr. Habets said finding a way to implement this treatment into patients’ daily lives is still a challenge, but researchers need to better understand dyskinesia to solve that problem.

He is hopeful about the potential of this research and grateful for the donors who make research grants like the one he received from the Parkinson’s Foundation possible.

“These donors are giving us time, giving us the opportunity to learn and to develop ourselves,” said Dr. Habets. “I think it has two big effects. There is a direct effect in the science that we do, but it is also growing careers. These funds, especially for young researchers, are very motivating grants to get and inspire us to move forward in our careers.”

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

For many people with Parkinson’s disease (PD) healthcare appointments with a specialist are often far apart, short on time and packed with information. Learning to be an active member of your care team — prioritizing your concerns, questions and needs before and during every healthcare appointment — can help you optimize the value of each visit.

The following article is based on a Parkinson’s Foundation Wellness Wednesday expert discussion Taking Charge: Strategies for Meaningful Healthcare Visits. Speakers include: Taylor Rush, PhD, health psychologist at Cleveland Clinic, a Parkinson’s Foundation Center of Excellence; Kathleen Blake, MD, MPH, People with Parkinson's Advisory Council vice chair and retired cardiologist; and Muhammad Mahdi Nashatizadeh, MD, neurologist at the University of Kansas School of Medicine, a Parkinson’s Foundation Center of Excellence.

Your Voice Matters

Because no two people experience Parkinson’s the same way, diagnosis and treatment can be complex. Further, accessing expert Parkinson’s care can be difficult. While more than one million people in the U.S. live with PD, research shows that there are less than 700 neurologists trained in movement disorders nationwide. Most of these specialists are concentrated in urban areas, and it can take several months to get an appointment.

Parkinson’s visits can be fast-paced, heavy on information and the gap between appointments can be significant. The priorities you want to cover might be different than those your doctor plans to discuss. It can be frustrating to leave an appointment without talking through your top concerns or fully understanding your doctor’s recommendations. Taking an active approach to your healthcare can address this frustration and help you get more out of each appointment.

Parkinson’s care is a partnership. Your healthcare team brings medical expertise to the relationship while you bring your own expertise — your unique experience living with Parkinson’s and the knowledge of what is most important to your daily life and well-being. You know how Parkinson’s is getting in the way of the things you want or need to do.

“Remember, you are the one going through the process, so you're the expert on what your experience is — your healthcare team relies on you to share what your concerns may be and what the priorities will be,” said Dr. Nashatizadeh.

Active Participation is Key to Empowered Care

Self-advocacy — understanding what you need, gathering information to make good choices and speaking up for yourself — is a skill; one that gets stronger with practice. Research shows people who speak up about their needs and actively participate during their healthcare appointments experience improved outcomes, increased satisfaction and more cost-efficient healthcare.

“Self-advocacy matters because you are the only consistent member of your healthcare team. You are present throughout your journey, not just during the clinical visits but between the visits,” said Dr. Blake, who is living with Parkinson’s.

More Tips for Optimizing Your Care

If you are comfortable including someone, bringing a companion to healthcare visits can be invaluable. Discuss roles before the appointment, so your companion or care partner knows how you prefer them to participate. Participation can help your companion gain a deeper understanding of Parkinson’s. They may also be able to take notes, share unique insights or help you follow through with any recommendations.

While movement symptoms can take center-stage at a PD appointment, Parkinson’s impacts more than movement. Mention any non-movement symptom concerns to your doctor. Anxiety or depression, common in Parkinson’s, can impact your ability to follow through on treatment recommendations. Talk to your neurologist about persistent feelings of sadness or worry.

“Mood should certainly not be discounted or minimized because it's not a motor symptom,” said Dr Rush. “It affects motor symptoms, it affects quality of life, and it affects relationships and functioning.”

Finding the right provider can be a process. If you feel like your healthcare provider isn’t hearing you or addressing your needs, or you leave appointments frustrated, it’s important to take action.

Try addressing your concerns by:

• Expressing your needs and expectations at the beginning of each appointment. Bring a written list of your top three discussion topics or ask your doctor about sending your list through the patient portal ahead of your next visit.

• Having a friend in your corner. Consider asking a companion to support you or to help explain the details of how PD symptoms, challenges or care needs are impacting you.

• Calling the Parkinson’s Foundation Helpline. Our Helpline team can help you prepare ahead of a visit, brainstorm solutions to challenges, or help you explore other care options.

Visit our Making the Most of Your Parkinson’s Care page to discover resources to help you prepare for your next visit.