Substantial Matters: Life & Science of Parkinson's

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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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.
 
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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. 
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Noviembre es el Mes Nacional de Cuidadores Familiares, una época para honrar a quienes cuidan desinteresadamente de sus seres queridos. Este año, la Parkinson's Foundation destaca las diversas experiencias de los cuidadores dentro de la comunidad de la enfermedad de Parkinson y más allá con nuestro tema: Cuidado real. En cualquier lugar. 
Cuidar de una persona con Parkinson significa prestar mucha atención, no sólo a los síntomas y las necesidades de su ser querido, sino también a su propio bienestar. Formar un equipo de apoyo, ya sea apoyándose en la familia, los vecinos o los amigos, crea una base sólida para que tenga el mejor apoyo a lo largo de su recorrido como cuidador. 
En este episodio, hablamos con Joanna Fitzgibbons, investigadora de Colorado University, dedicada a la comunidad de aliados en el cuidado. Nos cuenta cómo el valor cultural de "cuidar de los suyos" a veces puede hacer que sea difícil pedir ayuda. Ese orgullo, aunque profundamente arraigado en el cuidado y el propósito, puede llevar al cansancio y el agotamiento. Nos recuerda que nunca es demasiado pronto para hablar de recursos y crear un plan de cuidados antes de que se presente una crisis. 
Durante el episodio, Joanna mencionó el Conversation Project, un recurso en línea que ofrece orientación acerca de cómo entablar conversaciones difíciles con la familia y abogar por uno mismo ante el equipo de atención médica. Incluiremos un enlace aquí.
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