Conversations with Our Loved Ones
Substantial Matters: Life & Science of Parkinson’s
Release Date: 11/25/2025
Understanding REM Sleep Disorders in Parkinson's
Substantial Matters: Life & Science of 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...
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¡EN ESPAÑOL! Cómo identificar las señales: Problemas de deglución en el Parkinson
Substantial Matters: Life & Science of Parkinson’s
¡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 . 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...
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What Your Gut Has to Do with Parkinson’s
Substantial Matters: Life & Science of Parkinson’s
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...
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Speaking with Intention
Substantial Matters: Life & Science of Parkinson’s
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...
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Raising Awareness About Parkinson’s Through Advocacy
Substantial Matters: Life & Science of Parkinson’s
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 as a resource to support anyone looking to get more involved in advocacy. Through this platform,...
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Questions to Ask When Considering Deep Brain Stimulation
Substantial Matters: Life & Science of Parkinson’s
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 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...
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Improving Safety and Parkinson’s Care in the Hospital
Substantial Matters: Life & Science of Parkinson’s
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...
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¡EN ESPAÑOL! Manejo de los periodos en “off” en el Parkinson
Substantial Matters: Life & Science of Parkinson’s
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 ...
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Breakthroughs Take Time: Looking at the Future of Parkinson’s Research
Substantial Matters: Life & Science of Parkinson’s
There is still much to learn about Parkinson’s disease (PD), and it remains an ongoing challenge for scientists and researchers. The Parkinson’s Foundation recognizes the importance of supporting new and innovative ideas to advance research toward a cure. Research takes time- from a conceptual idea to early laboratory work, with the hope of eventually progressing to clinical stages and, ultimately, a breakthrough. is a global research initiative that offers genetic testing and counseling to people with Parkinson’s. The goal is to use the genetic data collected to...
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Prioritizing Parkinson’s Care
Substantial Matters: Life & Science of Parkinson’s
One of the key missions of the Parkinson’s Foundation is to increase access to high-quality care for everyone living with and affected by Parkinson’s disease (PD). As more people are diagnosed with PD each year, the availability of PD specialists remains limited. During a recent visit to Washington, DC, the Foundation led a National Roundtable on Parkinson’s Care and Innovation with the goal of convening a multidisciplinary group of experts to provide input and help shape the future of PD care. This multi-pronged approach recognizes the importance of having patient-centered care at the...
info_outline Caregiving takes many forms — from spouses, family members and friends providing daily, hands-on care, to those supporting from a distance to individuals managing care responsibilities on their own. No matter the circumstance, every caregiver plays an important role. This year, the Parkinson’s Foundation is highlighting the diverse experiences of caregivers within the Parkinson’s disease community and beyond with our theme: Real Care. Anywhere.
In this episode, we speak with CJ Polkinghorne and Nikki Logan, care partners for their spouses living with young-onset Parkinson’s disease. They share their stories of navigating the day-to-day challenges of caregiving, while remembering to celebrate the victories along the way. They emphasize the importance of communicating their needs and recognizing when it’s time to take a step back and care for themselves. They also reflect on learning to adjust expectations -- not only for their loved ones, but for themselves as well.
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