Prioritizing Parkinson’s Care
Substantial Matters: Life & Science of Parkinson’s
Release Date: 12/09/2025
¡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...
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Conversations with Our Loved Ones
Substantial Matters: Life & Science of Parkinson’s
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: . 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...
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¡EN ESPAÑOL! Envejecer juntos en casa: Apoyo a aliados en el cuidado y familias
Substantial Matters: Life & Science of Parkinson’s
Noviembre es el Mes Nacional de Cuidadores Familiares, una época para honrar a quienes cuidan desinteresadamente de sus seres queridos. Este año, la Parkinson's Foundation destaca las diversas experiencias de los cuidadores dentro de la comunidad de la enfermedad de Parkinson y más allá con nuestro tema: Cuidado real. En cualquier lugar. Cuidar de una persona con Parkinson significa prestar mucha atención, no sólo a los síntomas y las necesidades de su ser querido, sino también a su propio bienestar. Formar un equipo de apoyo, ya sea apoyándose en la familia, los vecinos o los...
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Finding Relief: Bladder Issues in Parkinson’s
Substantial Matters: Life & Science of Parkinson’s
Many people with Parkinson’s disease experience urinary or bladder issues at some point in their journey. These symptoms can take different forms and may affect people differently based on gender. Recognizing the signs is the first step toward understanding how to manage them and when to seek care. In this episode, Dr. Ankita Gupta, MD, MPH, FACOG, a urogynecologist at University of Louisville Hospital, talks about common bladder issues in Parkinson’s, such as urinary frequency, urgency, and nocturia. She explains how these symptoms can affect quality of life and even contribute to...
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Stories From Our Volunteers
Substantial Matters: Life & Science of Parkinson’s
Our Parkinson’s Foundation are the backbone of our outreach, bringing awareness about Parkinson’s disease (PD) directly into local communities. From leading community walks, to staffing tables at resource fairs, to starting meaningful conversations about the urgency of PD -- there are many ways to get involved with the Foundation. Each of our ambassadors has their own story and special reason for choosing to volunteer with us. In this special episode, we speak with Holly Bloom, who was recently recognized as a Rising Star in the South Central Chapter. She shares her volunteer experience...
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Allied Health Spotlight: Partnering with an Occupational Therapist
Substantial Matters: Life & Science of Parkinson’s
are a group of healthcare providers whose role and expertise complement the work of physicians. They 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 attends to your individual needs and addresses your overall well-being. Many people are familiar with physical and speech therapists, but fewer recognize the valuable benefits of working with an...
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What to Know Before Taking Nutritional Supplements for Parkinson’s
Substantial Matters: Life & Science of Parkinson’s
People with Parkinson’s disease (PD) may hear, whether through word of mouth or the internet, about herbs or supplements that claim to ease PD symptoms. It’s important to recognize that nutritional supplements are not federally regulated, and there is limited research supporting their overall effectiveness. You should always speak with your healthcare provider before starting a new medication or supplement. Nutritional supplements can include herbs, vitamins, or other drugs that are often available without a prescription. Since these products are not formally regulated, there is a...
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Make Every Minute Count: Optimizing Your Parkinson’s Doctor Visits
Substantial Matters: Life & Science of Parkinson’s
Medical appointments can feel overwhelming – there may be many questions on your mind and not enough time to address everything with your doctor. Preparing a list of questions and concerns ahead of time can help you focus on what matters most to you and ensure you’re actively advocating for your care. To support this process, the Parkinson’s Foundation created a that offers a step-by-step guide for identifying and prioritizing your top concerns. Advocating for yourself during appointments can be challenging, and at times, uncomfortable. Speaking up is essential to make sure your...
info_outlineOne 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 forefront of decision making, ensuring that people with Parkinson’s and key community members are actively involved in the conversation.
While the Foundation continues to influence policy at the federal and state level, there are also meaningful steps individuals can take to improve their care. The Foundation encourages people with PD and members of their care team to take an active role in managing their care by being proactive before, during, and after a doctor’s visit.
In this episode, we invite Dr. Kathy Blake, a retired cardiologist and person living with Parkinson’s, and Dr. Sneha Mantri, a movement disorders neurologist and the Chief Medical Officer at the Foundation. Together, they highlight the resources available to help prepare for a doctor’s visit and talk about the Foundation’s ongoing efforts to influence PD care nationwide. They emphasize the importance of self-advocacy and raising awareness about Parkinson’s.
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