Substantial Matters: Life & Science of Parkinson's

There are countless ways to get involved in raising awareness about Parkinson's disease (PD)- whether it's striking a conversation with someone at the grocery store, signing a petition, or meeting with your local members of congress. At its core, policy change begins with meaningful conversations. The more we openly talk about PD, the more we build understanding, urgency, and momentum to shape the future of Parkinson's care and treatment.
The Parkinson's Foundation recently launched the Advocacy Center as a resource to support anyone looking to get more involved in advocacy. Through this platform, people can receive the latest policy news and find opportunities to engage their legislators to help make an impact in the Parkinson's space. 
In this episode, we speak with Ken Chason, a Parkinson's Foundation Ambassador, US Veteran, and person with Parkinson's, alongside Andi Lipstein Fristedt, the Executive Vice President and Chief Strategy and Policy Officer at the Parkinson's Foundation. Drawing on their experiences in public service, they highlight the many ways to get involved in advocacy, and why this time is especially critical for accelerating change in the Parkinson's policy realm. 
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The standard treatment plan for Parkinson's disease (PD) typically begins with medications to help manage symptoms. As the disease progresses, symptoms may worsen or medications may become less effective over time. If this happens, more advanced treatment options may be considered, such as Deep Brain Stimulation (DBS), pump medications, or focused ultrasound. Understanding the potential benefits and risks of each option, and discussing them with your care team, can help you make an informed decision about the next steps in your treatment plan.
In this episode, we speak with Dr. Arjun Tarakad, Associate Professor of Neurology at Baylor College of Medicine, a Parkinson's Foundation Center of Excellence, and Samantha Helton, a person living with young-onset Parkinson's. Mrs. Helton shares her first-hand experience undergoing DBS, including what motivated her to say "yes" to surgery, while Dr. Tarakad discusses what to expect before, during, and after DBS surgery.
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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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