Substantial Matters: Life & Science of Parkinson’s

• Understanding Depression, Anxiety, and Apathy

  Depression, anxiety, and apathy are common symptoms that are often overlooked in people with Parkinson’s disease (PD). Nearly half of those living with PD are likely to experience depression or anxiety at some point, but these non-motor symptoms often go unrecognized and undertreated. Because their signs can overlap and mimic one another, it can be challenging to pinpoint exactly what someone is going through. Depression is known for feelings of persistent sadness or hopelessness. Anxiety might look like constant worry, excessive nervousness, or getting upset easily. Apathy, which is sometimes mistaken for depression, is the lack of motivation or interest to do things you used to enjoy. These symptoms can greatly impact your quality of life and worsen other PD symptoms.  In this episode, we speak with Lauren Zelouf, MSW, LCSW from Penn Medicine’s Parkinson’s Disease & Movement Disorders Center, a Parkinson’s Foundation Center of Excellence. She shares how to distinguish among these different symptoms, emphasizes the importance of recognizing the signs, and offers coping strategies for managing symptoms and seeking support. 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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• Maintaining Independence When Living Alone with Parkinson’s

  Living alone with Parkinson’s disease (PD) presents daily challenges, but it also offers certain benefits, such as the independence to control your own schedule. Whether you choose to live alone, or find that nearby friends and family aren’t as close as you would like, there are resources to support you.    Living alone can also bring physical and emotional hurdles. You may experience feelings of isolation or loneliness, and everyday tasks like cooking and cleaning can become more difficult while juggling PD symptoms. There are strategies that can help you feel more secured and empowered to overcome these challenges. For example, you might consider using a food delivery service on days when preparing meals feels overwhelming, or reaching out to a neighbor for help with shoveling snow. It’s important to prioritize self-care and recognize when it’s time to ask for help.    In this episode, we speak with Susan Englander and Fran Chernowsky, two individuals living alone with Parkinson’s who are also members of the Parkinson’s Foundation PD Solo group. They share their experiences with the initial challenges of receiving a PD diagnosis, the importance of staying open and flexible to new things, and the value of finding a supportive community.    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! Consejos prácticos y recursos para vivir bien con Parkinson

  La línea de ayuda de la Parkinson’s Foundation cuenta con personal de enfermería, trabajadores sociales y educadores de la salud. Están disponibles por teléfono y correo electrónico para responder a sus preguntas e inquietudes acerca de la enfermedad de Parkinson, tanto en inglés como en español. Nuestros especialistas de la Línea de Ayuda responden llamadas de personas de toda la comunidad de Parkinson, incluyendo a quienes viven con la enfermedad, sus seres queridos, proveedores de atención médica y más. Ofrecen apoyo y recomiendan los recursos que más le interesan, sin importar dónde se encuentre en su recorrido por el Parkinson. En este episodio, hablamos con Adolfo Diaz y Elena Godfrey, miembros de nuestro equipo de la Línea de Ayuda. Hablan acerca de preguntas frecuentes de quienes llaman, recursos acerca del Parkinson ofrecidos en español y consejos prácticos para manejar los síntomas y abogar por sí mismo ante su proveedor de atención médica. ¡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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• The Role of Caregivers in Parkinson’s Dementia

  Thinking and memory changes, also known as cognitive changes, may become more noticeable as Parkinson’s disease (PD) progresses. If these symptoms begin to interfere with everyday tasks, it may be a sign of dementia. Understanding the signs of dementia in Parkinson’s, along with its different names and variations, is essential for tailoring treatment options to your specific symptoms.  The early signs of dementia may be hard to notice at first. Often, it is the care partner or family member who witnesses the gradual decline in thinking abilities. Care partners play a crucial role in providing the best quality of life and support for their loved ones with Parkinson’s. In this episode, Jori Fleisher, MD, MSCE and Claire Pensyl talk about Parkinson’s dementia. Dr. Fleisher is a movement disorders neurologist and co-director of the Parkinson’s Foundation Center of Excellence at Rush University in Chicago, where her research focuses on designing and implementing novel models of care and support for people living with neurodegenerative disorders. She is the Principal Investigator of the PERSEVERE trial, an entirely virtual, national trial to educate and empower care partners whose loved ones have Parkinson's or Lewy Body Dementia (LBD).  Claire, on the other hand, was the care partner for her husband, Ira, who had PD and LBD. She shares her experience witnessing Ira’s cognitive challenges as they became more apparent and describes how she became motivated to learn more about the signs of dementia as the disease progressed. 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: The Challenges of Speech and Swallowing Issues

  Allied health professionals are a group of healthcare providers whose role and expertise complement the work of physicians. These 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 caters to your individual needs and addresses your overall well-being. In this second episode of our Allied Health Spotlight series, we highlight the benefits of working with a speech-language pathologist early on in your Parkinson’s journey. Parkinson’s disease (PD) affects movement throughout the body, including the face, mouth, throat, and breathing muscles. As the disease progresses, people with PD may develop problems with speaking and swallowing. This can not only impact eating habits, but can also lead to soft voice and drooling, making conversations during social gatherings uncomfortable.  In this episode, Melissa Grassia Chisholm, MS, CCC-SLP, a licensed speech pathologist and a voice-swallow airway expert, explains how speech and swallowing problems can develop in people with PD.  She also discusses different diagnostic procedures, therapies, and programs that can help improve speech and swallowing. 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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