Community Conversations – Re(building) Trust and Sharing Resources
Substantial Matters: Life & Science of Parkinson’s
Release Date: 02/20/2024
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...
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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...
info_outlineBlack and African American people diagnosed with Parkinson’s disease (PD) face disparities in healthcare access and outcomes, potentially leading to decreased access to care, resources, and research opportunities. It is crucial to recognize their unique needs and experiences so that scientists can better understand how PD impacts diverse communities. The Parkinson’s Foundation aims to identify these healthcare disparities to better serve and support the community.
In this first episode of our Black History Month special, Kimberly Gamble, Program Coordinator at Atrium Health, and Lance Wilson, Licensed Social Worker and Center Coordinator at Jefferson Health’s Comprehensive Parkinson’s Disease and Movement Disorders Center, share real-life examples of outreach strategies that they have used when engaging with the Black and African American community to dispel common misconceptions about research studies, and emphasize the importance of representing and showing up for your community.