People with Parkinson's disease (PD) are at a higher risk of being hospitalized and often face even greater challenges once admitted. Of the more than 1 million people living with PD in the US, nearly one third are hospitalized each year. During a hospital stay, they are more likely to receive the wrong medication, encounter missed or delayed dosages, receive medications known to worsen PD symptoms, experience limited mobility, and face a higher risk of dysphagia (difficulty swallowing). These gaps in care can lead to avoidable complications, longer hospital stays, and worse overall health outcomes.

The Parkinson's Foundation Hospital Care Initiative, launched in 2020, aims to eliminate preventable harm and promote higher quality PD inpatient care. Through this initiative, the Foundation provides hospitals with the opportunity for education, training, expertise, and the guidance necessary to improve hospital care for people with PD.

As a component of this work, the Parkinson's Foundation Hospital Care Learning Collaborative was established to foster a peer-led group of hospitals, emergency departments, and health systems committed to improving care for people with PD. This national network of hospital and clinical leaders share best practices and lessons learned from national experts to enhance care before, during, and after hospitalization.

In this episode, we speak with Rebecca Miller, an associate professor at the Yale School of Medicine in the Department of Psychiatry, and a person living with young-onset Parkinson's. She is joined by Leslie Pelton, a senior program officer with the John A. Hartford Foundation. Together, they do a deep dive into why hospital safety is especially critical for people with Parkinson's and highlight ongoing efforts to advance safer care, including initiatives such as the Age-Friendly Health Systems and the 4Ms framework.

During the episode, Leslie mentions the 4Ms Worksheet and My Health Checklist as useful tools for preparing for a hospital visit.

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Cuando los síntomas del Parkinson están bajo control durante el día, esto se conoce como estar en "on". Cuando los efectos del(los) medicamento(s) empiezan a desaparecer y los síntomas reaparecen o empeoran, se consideran periodos en "off". Estas fluctuaciones de los síntomas pueden variar de una persona a otra; algunas personas pueden notar más síntomas motores durante los períodos en "off", mientras que otras pueden verse más afectadas por síntomas no motores.

Los periodos en "off" pueden complicar las tareas diarias, sobre todo si suceden con mayor frecuencia a lo largo del día. En este episodio, hablamos con el Dr. Enrique Urrea Mendoza, neurólogo y especialista en trastornos del movimiento en Tallahassee Memorial Healthcare, para entender mejor por qué se producen los periodos en "off". Habla de los desencadenantes habituales que pueden contribuir a los periodos en "off" y comparte estrategias para manejar mejor estas fluctuaciones.

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There is still much to learn about Parkinson's disease (PD), and it remains an ongoing challenge for scientists and researchers. The Parkinson's Foundation recognizes the importance of supporting new and innovative ideas to advance research toward a cure.

Research takes time- from a conceptual idea to early laboratory work, with the hope of eventually progressing to clinical stages and, ultimately, a breakthrough. PD GENEration: Powered by the Parkinson's Foundation is a global research initiative that offers genetic testing and counseling to people with Parkinson's. The goal is to use the genetic data collected to accelerate current and future clinical trials aimed at developing better, more personalized treatments for Parkinson's.

In this episode, we speak with Connor Courtney, Associate Director of Research Programs at the Parkinson's Foundation. He takes a deep dive into how basic science lays the groundwork for future research and highlights the importance of supporting young scientists throughout their career in Parkinson's research. We later invite Maggie Caulfield, Director of Research Programs, who shares recent key insights from the PD GENEration study and discusses current challenges in Parkinson's research. Together, Maggie and Courtney emphasize the vital role individuals can play by learning more about and participating in research.

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