Substantial Matters: Life & Science of Parkinson's

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.
 
Follow and rate us on your favorite podcast platform to be notified when there's a new episode! Let us know what other topics you would like us to cover by visiting parkinson.org/feedback.

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.  
¡Siga y califíquenos en su plataforma favorita de podcasts para recibir notificaciones cuando salga un nuevo episodio! Cuéntenos que otros temas le gustaría que cubriéramos visitando parkinson.org/podcastencuesta.

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.  
Follow and rate us on your favorite podcast platform to be notified when there's a new episode! Let us know what other topics you would like us to cover by visiting parkinson.org/feedback.

One of the key missions of the Parkinson's Foundation is to increase access to high-quality care for everyone living with and affected by Parkinson's disease (PD). As more people are diagnosed with PD each year, the availability of PD specialists remains limited. During a recent visit to Washington, DC, the Foundation led a National Roundtable on Parkinson's Care and Innovation with the goal of convening a multidisciplinary group of experts to provide input and help shape the future of PD care. This multi-pronged approach recognizes the importance of having patient-centered care at the forefront of decision making, ensuring that people with Parkinson's and key community members are actively involved in the conversation.
 
While the Foundation continues to influence policy at the federal and state level, there are also meaningful steps individuals can take to improve their care. The Foundation encourages people with PD and members of their care team to take an active role in managing their care by being proactive before, during, and after a doctor's visit.
 
In this episode, we invite Dr. Kathy Blake, a retired cardiologist and person living with Parkinson's, and Dr. Sneha Mantri, a movement disorders neurologist and the Chief Medical Officer at the Foundation. Together, they highlight the resources available to help prepare for a doctor's visit and talk about the Foundation's ongoing efforts to influence PD care nationwide. They emphasize the importance of self-advocacy and raising awareness about Parkinson's.
 
Follow and rate us on your favorite podcast platform to be notified when there's a new episode! Let us know what other topics you would like us to cover by visiting parkinson.org/feedback.

Caregiving takes many forms — from spouses, family members and friends providing daily, hands-on care, to those supporting from a distance to individuals managing care responsibilities on their own. No matter the circumstance, every caregiver plays an important role. This year, the Parkinson's Foundation is highlighting the diverse experiences of caregivers within the Parkinson's disease community and beyond with our theme: Real Care. Anywhere.

In this episode, we speak with CJ Polkinghorne and Nikki Logan, care partners for their spouses living with young-onset Parkinson's disease. They share their stories of navigating the day-to-day challenges of caregiving, while remembering to celebrate the victories along the way. They emphasize the importance of communicating their needs and recognizing when it's time to take a step back and care for themselves. They also reflect on learning to adjust expectations -- not only for their loved ones, but for themselves as well. 
Follow and rate us on your favorite podcast platform to be notified when there's a new episode! Let us know what other topics you would like us to cover by visiting parkinson.org/feedback.