Substantial Matters: Life & Science of Parkinson's

• ¡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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• Allied Health Spotlight: Partnering with an Occupational Therapist

  Allied health professionals are a group of healthcare providers whose role and expertise complement the work of physicians. They include specialists such as physical and occupational therapists, speech-language pathologists, nutritionists, and many more. They are just as important as your Movement Disorders Specialists and Neurologists and play a vital role in creating a comprehensive, well-rounded Parkinson's care team that attends to your individual needs and addresses your overall well-being. Many people are familiar with physical and speech therapists, but fewer recognize the valuable benefits of working with an occupational therapist (OT). An OT helps identify the activities that you enjoy and ensures strategies are in place so you can continue doing what matters most. They work with you to adapt your environment, tap into your strengths, and create realistic strategies so you can keep living life on your terms. In this episode, Karyssa Silva, MS, OTR/L, CLT, an occupational therapist at Aldersbridge Physical Therapy & Wellness Outpatient Center in Rhode Island, shares how she helps people with Parkinson's with daily tasks and activities that bring them joy. She works closely with people with PD and their loved ones to address physical and mental challenges, empowering them to stay engaged in the activities they value the most. During the episode, Karyssa mentions that people sometimes walk away from their OT appointment and wonder if they missed something important. Here's a worksheet to help organize your thoughts and make the most of your time during appointments. 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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• What to Know Before Taking Nutritional Supplements for Parkinson's

  People with Parkinson's disease (PD) may hear, whether through word of mouth or the internet, about herbs or supplements that claim to ease PD symptoms. It's important to recognize that nutritional supplements are not federally regulated, and there is limited research supporting their overall effectiveness. You should always speak with your healthcare provider before starting a new medication or supplement.  Nutritional supplements can include herbs, vitamins, or other drugs that are often available without a prescription. Since these products are not formally regulated, there is a high risk for potentially dangerous drug interactions when mixed with other medications, regardless of if they are prescribed by a doctor or available over the counter.  In this episode, we speak with Dr. Angela Hill, a pharmacist and professor at the University of South Florida, to better understand the precautions of taking supplements while living with PD. She discusses the potential side effects and risks of taking drugs without fully knowing what's in their ingredients, as well as the warning signs to watch for. She shares tips for reading and evaluating labels and offers guidance on the type of questions to ask a pharmacist to help decide whether the supplement may be a good fit based on your specific health condition.  During the episode, Dr. Hill mentions additional resources for evaluating herbal medications and understanding medication timing. Click here to view the articles, along with her contact information for any follow-up questions. 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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