Substantial Matters: Life & Science of Parkinson’s

• 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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• Reframing Your Thoughts with Mindfulness

  Mindfulness is the intentional act of paying attention to one’s body, sensations, thoughts, feelings, or surroundings in the present moment, without judgment. Practicing mindfulness can give a sense of calm, help manage pain, reduce stress, and improve clarity and mental well-being. In being aware of and calmly accepting feelings, thoughts, and bodily sensations in a non-judgmental way, individuals can reshape their thoughts and expectations into something more manageable. For people with Parkinson’s disease (PD), mindfulness is particularly good for reducing anxiety and depression, as well as coping with daily stressors. In this episode, Crista Ellis, Senior Community Program Manager with the Parkinson’s Foundation and a certified yoga and meditation educator, describes what mindfulness is, how easy it is to practice in a short amount of time, and how it can benefit people with PD. She also leads us through a brief mindfulness practice for listeners to participate in. 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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• The Evolution of PD GENEration for Genetic Testing & Counseling

  The Parkinson’s Foundation makes life better for people with Parkinson’s disease (PD) by improving care and advancing research toward a cure. The Foundation recognizes the importance of funding and supporting research studies dedicated to better understanding the causes of PD, developing more effective treatments, and ultimately finding a cure. The Foundation awards research grants to support investigators working on diverse research projects, along with collaborating with other institutions to advance PD research.  One of its major initiatives is exploring the genes and other factors associated with the development of PD through a global project, PD GENEration: Mapping the Future of Parkinson’s Disease. By gathering genetic information from tens of thousands of people with PD, this study offers genetic testing for relevant disease-related genes and genetic counseling to help participants understand their results, all at no cost to them. At the same time, knowledge gathered through PD GENEration will promote more focused, gene-specific clinical trials of drugs and may lead to novel therapy options for people with PD. In this episode, we explore the origins of PD GENEration, its growth over the years, and its goals with Dr. James Beck, Chief Scientific Officer of the Parkinson’s Foundation. 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! Los desafíos del habla y la deglución

  Los profesionales de la salud aliados son un grupo de profesionales médicos cuya función y conocimientos complementan la labor de los médicos. Entre ellos se encuentran los fisioterapeutas, terapeutas del habla y el lenguaje, nutricionistas y más. Son tan importantes como sus especialistas en trastornos del movimiento y neurólogos y desempeñan un papel vital en la creación de un equipo de atención al Parkinson integral y completo que atienda sus necesidades individuales y se ocupe de su bienestar general.  En este episodio, hablamos con Ana Molano, una terapeuta del habla y el lenguaje especializada en el tratamiento de los trastornos de la voz y la deglución. A medida que avanza la enfermedad de Parkinson, la voz de una persona puede volverse más suave o puede experimentar dificultades para tragar. Ana habla de las ventajas de trabajar con un terapeuta del habla para evaluar y abordar los desafíos del habla y la deglución en la EP. Destaca la importancia de obtener una evaluación de referencia para identificar los problemas actuales, lo que ayuda a crear un plan terapéutico individualizado. También habla de los síntomas frecuentes que puede experimentar una persona con la EP, así como de algunos signos menos comunes a los que hay que estar atentos. 

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• Listening to the Voices of Our Parkinson’s Caregivers

  Each November, the Parkinson’s Foundation joins organizations across the country to honor care partners for National Family Caregivers Month. In this episode, we highlight the stories and experiences of two people who care for a person with Parkinson’s disease. Ripley Hensley is an emergency room nurse and a doctoral student at the University of Connecticut School of Nursing. Although she currently lives in Connecticut, she manages to find ways to help support both her mother, who is the primary caregiver, and her father who has Parkinson’s, back in Georgia. Meanwhile, Tom Graffeo lives with his partner, who has young-onset Parkinson’s. Although their caregiving roles differ, they share similar concerns and discuss how they provide care for their loved ones, while also prioritizing their own well-being. 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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