Substantial Matters: Life & Science of Parkinson's

Parkinson's Foundation

How can people with Parkinson's live a better life today? Join the Parkinson's Foundation as we highlight the treatments and techniques that can help all people affected by Parkinson's live a better life today, as well as the research that can bring a better tomorrow. View more information on our episodes by visiting parkinson.org/Podcast. Share your comments and thoughts at parkinson.org/Feedback.

  1. Aug 11

    Understanding REM Sleep Disorder in Parkinson's

    Sleep problems affect more than 75% people with Parkinson's disease (PD) and can have a significant impact on day to day life. Common challenges include difficulty falling or staying asleep, excessive sleepiness during the day, and acting out dreams while asleep. This episode focuses on REM (Rapid Eye Movement) Sleep Behavior Disorder, or RBD, a condition in which people may verbally and/or physically act out their dreams. These instances can increase the risk of injury for both the person with Parkinson's and their bed partner, making awareness and symptom management especially important. We invited Dr. Aleksandar Videnovic, Chief of the Division of Sleep Neurology at Massachusetts General Brigham, along with Caron Gan and John Poma, members of the NAPS Consortium on REM Sleep Behavior Disorders, to share insights on what RBD is, why it happens, and strategies for managing symptoms. Key Takeaways:  Growing research shows that RBD can precede a Parkinson's diagnosis by several years.   RBD symptoms can change over time and may include physically and/or verbally acting out dreams.   Sleep disturbances and fragmented sleep can contribute to fatigue and may worsen other PD symptoms.   Practical Strategies:  Remove objects near the bed that may cause injury.  Lower the bed or mattress to reduce the risk of falls.  Create a consistent sleep schedule.  Keep a sleep diary to track symptoms and patterns.  Find an "RBD buddy" to share stories and tips.  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.

  2. Jul 28

    ¡EN ESPAÑOL! Cómo identificar las señales: Problemas de deglución en el Parkinson

    ¡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.  Muchas personas asumen que los problemas para tragar, o la disfagia, solo ocurren en las etapas más avanzadas de la enfermedad de Parkinson (EP). En realidad, como estos cambios pueden desarrollarse gradualmente y aparecer antes de lo esperado, la detección temprana es fundamental. Saber qué señales buscar puede ayudar a las personas con Parkinson y a sus seres queridos a obtener el apoyo y la atención que necesitan.  En la parte 1 de esta serie de dos partes, hablamos con Martha Suárez Torres, terapeuta del habla y el lenguaje y aliado en el cuidado de su esposo con Parkinson, sobre cómo los cambios al tragar pueden afectar a las personas con la EP y cuándo es momento de buscar ayuda de un especialista. También comparte estrategias para reconocer cambios en casa, manejar la deglución de manera segura y explica cómo los familiares y seres queridos desempeñan un papel importante al informar cambios con el tiempo.  Manténgase atento a la parte 2, donde continuamos nuestra conversación con Martha mientras habla sobre cómo abordar los desafíos de comunicación al cuidar a alguien con Parkinson. Durante el episodio, Martha menciona un curso en línea sobre cómo entender el papel de la atención neuropaliativa para apoyar a un ser querido con Parkinson. Obtenga más información aquí, actualmente disponible en inglés. Recursos en español:  Lea nuestra hoja informativa sobre "el habla y la deglución (tragar) en el Parkinson".  Aprenda cómo puede ayudar un terapeuta del habla y el lenguaje.  Explore más sobre los cambios en el habla y la deglución en el Parkinson. Puntos clave:  La detección temprana es fundamental para reconocer los cambios al tragar y recibir el tratamiento y el apoyo adecuados.  Los cambios al tragar pueden ser difíciles de detectar. Conocer las señales comunes puede ayudar a las personas con la EP y a sus aliados en la atención a notar un cambio y buscar apoyo.  Los especialistas del habla y el lenguaje con frecuencia pueden brindar atención en persona o por telesalud. Si el acceso a la atención es limitado, aprender estrategias prácticas y saber cuándo buscar apoyo profesional puede ayudar a las personas a seguir manejando los síntomas en casa.

  3. Mar 6

    Improving Safety and Parkinson's Care in the Hospital

    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.

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How can people with Parkinson's live a better life today? Join the Parkinson's Foundation as we highlight the treatments and techniques that can help all people affected by Parkinson's live a better life today, as well as the research that can bring a better tomorrow. View more information on our episodes by visiting parkinson.org/Podcast. Share your comments and thoughts at parkinson.org/Feedback.