Substantial Matters: Life & Science of Parkinson's

• Prioritizing Parkinson's Care

  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.

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• Conversations with Our Loved Ones

  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.

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• ¡EN ESPAÑOL! Envejecer juntos en casa: Apoyo a aliados en el cuidado y familias

  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. ¡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. 

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• Finding Relief: Bladder Issues in Parkinson's

  Many people with Parkinson's disease experience urinary or bladder issues at some point in their journey. These symptoms can take different forms and may affect people differently based on gender. Recognizing the signs is the first step toward understanding how to manage them and when to seek care.   In this episode, Dr. Ankita Gupta, MD, MPH, FACOG, a urogynecologist at University of Louisville Hospital, talks about common bladder issues in Parkinson's, such as urinary frequency, urgency, and nocturia. She explains how these symptoms can affect quality of life and even contribute to social isolation, and she highlights treatment options that can help manage them.   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.

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• Stories From Our Volunteers

  Our Parkinson's Foundation Ambassadors are the backbone of our outreach, bringing awareness about Parkinson's disease (PD) directly into local communities. From leading community walks, to staffing tables at resource fairs, to starting meaningful conversations about the urgency of PD -- there are many ways to get involved with the Foundation. Each of our ambassadors has their own story and special reason for choosing to volunteer with us. In this special episode, we speak with Holly Bloom, who was recently recognized as a Rising Star in the South Central Chapter. She shares her volunteer experience with the Foundation and her personal journey as a care partner. 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.

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