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.

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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.

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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.

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