Para muchas personas con la enfermedad de Parkinson (EP), las citas médicas con un especialista suelen ser muy espaciadas, con poco tiempo y repletas de información. Aprender a ser un miembro activo de su equipo de atención médica —dando prioridad a sus inquietudes, preguntas y necesidades antes y durante cada cita médica— puede ayudarle a optimizar el valor de cada consulta.

El siguiente artículo está basado en una charla presentada por expertos en un Miércoles de Bienestar de la Parkinson's Foundation, Taking Charge: Strategies for Meaningful Healthcare Visits. Para obtener recursos adicionales que le ayuden a prepararse para su próxima cita, visite nuestra página Optimizar su atención médica para el Parkinson.

Su voz es importante

Dado que no hay dos personas que experimenten el Parkinson de la misma manera, el diagnóstico y el tratamiento pueden ser complejos. Además, el acceso a la atención especializada en Parkinson puede resultar difícil. Aunque en los EE.UU. más de un millón de personas viven con la EP, las investigaciones muestran que hay menos de 700 neurólogos formados en trastornos del movimiento en todo el país. La mayoría de estos especialistas se concentran en zonas urbanas y puede tomar varios meses conseguir una cita.

Las consultas de Parkinson pueden ser rápidas, con mucha información y el intervalo entre citas puede ser considerable. Las prioridades que usted desea cubrir pueden ser diferentes de las que su médico tiene previsto atender. Puede ser frustrante salir de una consulta sin haber hablado de sus principales inquietudes o sin haber comprendido plenamente las recomendaciones de su médico. Adoptar un enfoque activo de su atención médica puede resolver esta frustración y ayudarle a sacar más partido de cada cita.

La atención para el Parkinson es una colaboración.  Su equipo médico aporta su experiencia médica a la relación, mientras que usted aporta la suya propia: su experiencia única viviendo con Parkinson y el conocimiento de lo que es más importante para su vida diaria y su bienestar. Ya sabe cómoel Parkinson se interpone en el camino de las cosas que quiere o necesita hacer.

"Recuerde, usted es quien está pasando por el proceso, así que usted es el experto en su experiencia: su equipo de atención médica confía en que usted les comparta sus posibles inquietudes y cuáles serán las prioridades", dijo el Dr. Nashatizadeh.

La participación activa es la clave de una atención empoderada

La autodefensa —entender lo que necesita usted, reunir información para tomar buenas decisiones y hablar por sí mismo— es una habilidad que se refuerza con la práctica. Los estudios demuestran que las personas que hablan de sus necesidades y participan activamente en sus citas médicas obtienen mejores resultados, están más satisfechas y reciben una atención médica más eficiente en costos.

"La autodefensa es importante porque usted es el único miembro constante de su equipo de atención médica. Está presente a lo largo de todo el recorrido, no sólo durante las visitas clínicas, sino también entre citas", dijo la Dra. Blake, que vive con Parkinson.

1. Antes de una cita médica, tómese un tiempo para prepararse.
2. Durante su cita, priorice lo que más le importa.
3. Entre visita y visita, siga las recomendaciones y sugerencias de su equipo y aproveche al máximo su tiempo.

Más consejos para optimizar sus cuidados

Si se siente cómodo incluyendo a alguien, llevar a un acompañante a las citas médicas puede ser muy valioso. Hable de los papeles antes de la cita, para que su acompañante o aliado en el cuidado sepa cómo prefiere que participe. La participación puede ayudar a su acompañante a comprender mejor el Parkinson. También puede tomar notas, compartir puntos de vista únicos o ayudarle a seguir las recomendaciones.

Aunque los síntomas motores pueden ser el centro de atención en la cita de la EP, el Parkinson afecta mucho más que el movimiento. Mencione cualquier síntoma no motor a su médico. La ansiedad o la depresión, frecuentes en la enfermedad de Parkinson, pueden afectar su capacidad para seguir las recomendaciones del tratamiento. Hable con su neurólogo si tiene sentimientos persistentes de tristeza o preocupación.

"El estado de ánimo no debe descartarse ni minimizarse porque no sea un síntoma motor", dijo la Dra. Rush. "Afecta los síntomas motores, afecta la calidad de vida y afecta las relaciones y el funcionamiento".

Encontrar el proveedor adecuado puede ser todo un proceso. Si tiene la sensación de que su proveedor de atención médica no escucha o no atiende sus necesidades o si abandona las citas frustrado, es importante que actúe.

Trate de abordar sus inquietudes:

• expresando sus necesidades y expectativas al principio de cada cita. Lleve una lista escrita de sus tres temas de conversación principales o pregunte a su médico si puede enviar su lista a través del portal del paciente antes de su próxima visita.

• Tenga un amigo a su lado. Considere pedirle a un acompañante que lo apoye o ayude a explicar los detalles de cómo le afectan los síntomas, los desafíos o las necesidades de cuidados de la EP.

• Llame a la Línea de Ayuda de la Parkinson’s Foundation. Nuestro equipo de la Línea de Ayuda puede ayudarle a prepararse antes de una consulta, aportar soluciones a los problemas o ayudarle a explorar otras opciones de atención.

Visite nuestra página Optimizar su atención médica para el Parkinson para descubrir recursos que le ayudarán a preparar su próxima cita.

For the first time, the Parkinson’s Foundation is connecting its mission and vision to policy and advocacy work that drives change at the federal and state levels. Through this work, the Foundation aims to shape a future where Parkinson’s disease (PD) research is steadily funded, every person with PD has access to the care and support they deserve, and fewer people develop PD in the first place.

Leading these efforts is Andi Lipstein Fristedt, Executive Vice President, Chief Strategy and Policy Officer. Andi leads the Foundation’s strategic direction and policy initiatives. Andi brings nearly 20 years of leadership experience to the Parkinson’s Foundation. In this interview, Andi shares how she views policy as an opportunity and powerful tool to accelerate progress and create meaningful change — starting now.

1. Can you tell us about your prior policy experience in the health space?

Before joining the Parkinson's Foundation, I spent most of my career in government. Most recently, I served as Deputy Director at the Centers for Disease Control (CDC) where I led the agency’s global health work, as well as its cross cutting offices related to policy, budget, communications and congressional engagement. Before that I was at the Food and Drug Administration (FDA) as Deputy Commissioner for Policy, Legislation & International Affairs where I advanced key policies to strengthen the agency’s regulatory agenda. I previously served on Capitol Hill for almost a decade with the Senate Committee on Health, Education, Labor and Pensions and as Chief of Staff in the Oregon State Legislature.

These diverse experiences fuel my passion to bridge the gap between Parkinson’s research, care and policy at both the state and federal level.

2. Why bring your talents to the Parkinson’s community?

Like so many others, Parkinson’s disease has impacted people I care deeply about. I am excited about the opportunity to come to an organization that understands the people it serves, centers them in the work, and is positioned to drive progress alongside them. I’m here to lead change for people living with Parkinson’s and their care partners. These are challenging times in public policy, but there's a real opportunity to reimagine what’s possible. The federal and state policy landscape gives us opportunity to make short- and long-term changes to strengthen public health and health care for years to come.

3. What are the top policy issues for people with Parkinson’s? How is the Parkinson’s Foundation addressing them?

Right now, the Foundation is advancing a number of policy priorities:

• Protecting and advancing the National Parkinson's Project. The National Plan to End Parkinson’s Act was signed into law in 2024, creating the National Parkinson’s Project, and now we’re working to push the administration to implement it in a timely manner. This is the first federal project dedicated to PD research, prevention and care — our policy work will help ensure it delivers real results for people with PD.
• Research funding. Parkinson's is the fastest-growing neurodegenerative disease, yet federal funding has not kept pace with its rise. In addition to advocating for more funding at the National Institutes of Health (NIH) and other federal agencies, we're starting to see research funding opportunities in state governments. Our goal is to secure $600 million a year for Parkinson's research at the NIH by 2028. We aim to fully deliver on the promise of this pivotal moment in PD discovery.

“Our goal is to secure $600 million a year of Parkinson's disease research at the NIH by 2028. We aim to fully deliver on the promise of this pivotal moment in PD discovery.”

• Environmental health threats. Environmental factors, such as chemicals like paraquat and trichloroethylene (TCE) have been tied to Parkinson's, and this is where policy changes can make a big difference. Paraquat is banned in more than 70 countries, including China, even though they still sell it to the U.S. It's something that we have the power to change by working with the Environmental Protection Agency (EPA) and engaging with state governments.
• Helping people access PD care. There's so much work to do here at the federal and state levels, making sure that we're supporting policies that help people with Parkinson’s access timely, quality and affordable care wherever they live. For example, we’ve seen how hard the uncertainty around telehealth coverage has made care for providers and people with PD.
• Supporting public health agencies. Public health agencies need the tools and the authority to advance prevention and support new PD treatments and care breakthroughs. This is not a given. We work to ensure the strongest possible public health programs, to ensure that we're moving towards better treatments and a cure for Parkinson's.

4. How can people with Parkinson’s and allies get involved?

There are a lot of opportunities for people with Parkinson's and the people who care about them to engage in policy. Policymakers need to hear your stories and experiences as they are considering policy changes, and we’re working to help people engage with policymakers, year-round.

One exciting opportunity to engage with Congress is coming up March 15 to 18, in Washington, D.C., through our Parkinson's Policy Forum and Day of Action. We will host this event alongside The Michael J. Fox Foundation for Parkinson’s Research and the American Parkinson Disease Association. We’ll be inviting advocates to come to D.C., spend time together as a community and engage lawmakers around key priorities for the Parkinson's community.

But you don’t have to be in Washington, D.C. or a state capital to reach out to your lawmakers, and there are lots of other ways to be involved in advocacy. The Parkinson’s Foundation is building and expanding our platform to share timely action items and help support advocates who want to do that work and make their voices heard.

5. Why should policymakers care about policies that impact Parkinson’s?

Parkinson’s is the fastest-growing neurodegenerative disease, with more than 1 million Americans living with PD and 90,000 new people diagnosed each year. Policymakers have a responsibility to address diseases like PD that impact communities and drive up health care costs. Research for cures has always been, and must remain, bipartisan. When policymakers hear stories from their constituents facing life-altering issues, they listen — especially when those voices unite.

We are at a pivotal moment, with scientific advancements within reach. Now is not the time to pump the breaks — but hit the gas to take advantage of the incredible scientific progress that has been happening to yield real changes for people living with PD. Sustained congressional investment in research and programs leads directly to earlier detection, better treatments, and a cure. And today, we know policy actions by state and federal agencies can protect people from developing PD in the first place.

6. What should people in the PD community tell their Congressperson or State Representative?

Part of the Parkinson’s Foundation policy strategy is showing how policy decisions shape the daily lives of people with Parkinson's and, in turn, ensuring that policy changes reflect lived experience. We need legislators to see a future where new disease-modifying therapies exist, where there are enough specialists to treat people with Parkinson’s, where people are protected from toxic chemicals that contribute to the development of PD and where there's a cure. People with Parkinson’s and their families play a critical role in sharing what these possibilities mean to them.

Lawmakers respond to personal stories — they make this disease tangible. Connecting policy to the realities of living with Parkinson’s is a vital component of our policy work.

7. What gives you hope about helping people with Parkinson’s advocate for policy change?

The community. There are so many people across the country and world, demanding a different future where we think more about Parkinson's disease on a federal and state policy level. The strength and passion of this community is what will ultimately make the difference in the policy space.

8. What’s next for Parkinson’s Foundation policy and advocacy work?

At the Parkinson’s Foundation, we’re focused on policies that improve life for people living with PD today and accelerate progress toward better care and a cure. There's so much change happening across health agencies, and we know that a strong, effective policy strategy will help advance care, research and support for people with Parkinson's.

We’re excited for the Parkinson's Policy Forum and Day of Action coming up in March and the launch of our policy priorities.

We also invite our community to help raise PD awareness. Join us at the local level, stay connected with us and share information with friends and family.

Make your voice heard. Sign up today to receive our emails and take part in Parkinson’s Foundation advocacy work. If you already receive our emails, sign in to the Online Supporter Center and opt into Policy emails under Communication Preferences.