Stay ConnectedHow 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.
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You don't have to have Parkinson's disease (PD), or even know someone who does, to help make a difference. Although you may not personally know someone living with Parkinson's, nearly 90,000 people are diagnosed each year. Having a basic understanding of the disease and how it can present is critical to raising awareness and helping people recognize the signs of PD in themselves or someone they know. Earlier diagnosis can lead to timely treatment, better health outcomes, and an improved quality of life.
Parkinson's has long been viewed as an "old man's disease," creating the misconception that it only affects older adults. In this episode, Bryan Geenen and Prajakti Barot, Parkinson's Foundation Ambassadors in Colorado, share why they chose to become volunteers and how they're helping challenge that stereotype. They discuss why younger generations play a vital role in raising awareness, bringing fresh perspectives, and inspiring others to take action.
Key Takeaways:
As more people are diagnosed with Parkinson's each year, younger generations have an opportunity to bring fresh ideas and technology to build on past work.
Knowing the common signs of PD helps educate others about the disease.
You don't have to know someone with PD to make a positive impact on the Parkinson's 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.
Want more? Listen to the full episode at parkinson.org/Podcasts.
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.
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.
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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.
Interest in the gut microbiome and its potential role in Parkinson's disease (PD) continues to grow. Before exploring the latest research, it's helpful to understand what the microbiome is, the role it plays in overall health, and why researchers are studying its connection to Parkinson's.
In this episode, we speak with Dr. Lisa Deuel from the University of Vermont Medical Center about what researchers currently know, and don't know, about the relationship between the gut and Parkinson's. She explains the gut-brain connection and discusses common gastrointestinal issues experienced by people with Parkinson's, such as constipation and gastroparesis (limited ability to empty the stomach). She wraps up by sharing practical strategies to support gut health.
Key Takeaways:
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.
Changes in speech and swallowing are common in Parkinson's disease (PD), but they can be difficult to recognize without understanding how they may present. These changes often happen because of lower dopamine levels in people with PD, which can make automatic actions- like speaking loud, clear sentences without requiring much thought- more difficult.
Parkinson Voice Project developed the SPEAK OUT! Therapy Program to help people with PD speak and swallow with intention, addressing these challenges.
In the episode, we speak with Samantha Elandary, MA, CCC-SLP, President and Chief Executive Officer of Parkinson Voice Project. She discusses the benefits of working with a Certified SPEAK OUT! Provider, how to identify signs of speech and swallowing difficulties, and offers tips for incorporating these techniques into daily life. Toward the end of the episode, Samantha demonstrates a brief speech exercise that takes just a few minutes but can provide meaningful benefits when practiced consistently and intentionally.
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.
There are countless ways to get involved in raising awareness about Parkinson's disease (PD)- whether it's striking a conversation with someone at the grocery store, signing a petition, or meeting with your local members of congress. At its core, policy change begins with meaningful conversations. The more we openly talk about PD, the more we build understanding, urgency, and momentum to shape the future of Parkinson's care and treatment.
The Parkinson's Foundation recently launched the Advocacy Center as a resource to support anyone looking to get more involved in advocacy. Through this platform, people can receive the latest policy news and find opportunities to engage their legislators to help make an impact in the Parkinson's space.
In this episode, we speak with Ken Chason, a Parkinson's Foundation Ambassador, US Veteran, and person with Parkinson's, alongside Andi Lipstein Fristedt, the Executive Vice President and Chief Strategy and Policy Officer at the Parkinson's Foundation. Drawing on their experiences in public service, they highlight the many ways to get involved in advocacy, and why this time is especially critical for accelerating change in the Parkinson's policy realm.
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.
The standard treatment plan for Parkinson's disease (PD) typically begins with medications to help manage symptoms. As the disease progresses, symptoms may worsen or medications may become less effective over time. If this happens, more advanced treatment options may be considered, such as Deep Brain Stimulation (DBS), pump medications, or focused ultrasound. Understanding the potential benefits and risks of each option, and discussing them with your care team, can help you make an informed decision about the next steps in your treatment plan.
In this episode, we speak with Dr. Arjun Tarakad, Associate Professor of Neurology at Baylor College of Medicine, a Parkinson's Foundation Center of Excellence, and Samantha Helton, a person living with young-onset Parkinson's. Mrs. Helton shares her first-hand experience undergoing DBS, including what motivated her to say "yes" to surgery, while Dr. Tarakad discusses what to expect before, during, and after DBS surgery.
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.
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.
Cuando los síntomas del Parkinson están bajo control durante el día, esto se conoce como estar en "on". Cuando los efectos del(los) medicamento(s) empiezan a desaparecer y los síntomas reaparecen o empeoran, se consideran periodos en "off". Estas fluctuaciones de los síntomas pueden variar de una persona a otra; algunas personas pueden notar más síntomas motores durante los períodos en "off", mientras que otras pueden verse más afectadas por síntomas no motores.
Los periodos en "off" pueden complicar las tareas diarias, sobre todo si suceden con mayor frecuencia a lo largo del día. En este episodio, hablamos con el Dr. Enrique Urrea Mendoza, neurólogo y especialista en trastornos del movimiento en Tallahassee Memorial Healthcare, para entender mejor por qué se producen los periodos en "off". Habla de los desencadenantes habituales que pueden contribuir a los periodos en "off" y comparte estrategias para manejar mejor estas fluctuaciones.
¡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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