Managing the realities of life with Parkinson’s
The Parkinson’s Resilience Institute provides education, guidance, and support to help people with PD build personal resilience and keep living as fully as possible.
Parkinson’s disease is the world’s fastest-growing neurological disorder.
Today, more than 1.1 million Americans are living with Parkinson’s disease, and around 90,000 new cases are diagnosed each year. Behind those numbers are individuals and families trying to make sense of a life-changing condition with too little guidance and too much uncertainty.
Specialized Parkinson’s care is limited and unevenly distributed. While there are roughly 17,000 neurologists in the United States, only about 9,000 actively treat Parkinson’s, and just a small fraction – around 660 – are trained as Movement Disorder Specialists. All but about 100 of these specialists are concentrated in major medical centers, leaving the rest of the country underserved. Nationwide, nearly 40% of people with Parkinson’s never see a neurologist in any given year.
Trying to Understand What No One Fully Explains
Parkinson’s is complicated. While dopamine loss drives the hallmark motor symptoms, Parkinson’s also disrupts other neurotransmitters. Changes in norepinephrine affect energy and regulation. Acetylcholine influences attention and cognition. Serotonin plays a role in mood and sleep. The balance between GABA and glutamate shapes motor signaling. Together, these disruptions create a wide range of non-motor symptoms that often aren’t recognized as part of the PD spectrum.
This complexity leads to highly varied experiences from one person to the next. Patterns of symptoms, progression, and daily impact vary widely, yet clear, consistent information about this reality is not widely accessible. Many patients and caregivers never gain a full understanding of what the disease involves or how to navigate it over time.
Fortunately, progress is being made in bringing awareness and understanding, but this information is not evenly distributed across geographic or demographic boundaries.
We’re here to change all that.
Our mission is to help patients and caregivers build the resilience needed to live more fully with the disease. Our hope is to meaningfully impact the state of Parkinson’s care nationwide and support patients in maintaining resilience to face its ongoing challenges.
Educating Patients and Building a Nationwide Network of Support Groups
We’re in the process of developing Parkinson’s Pilot, a video-based course offering patients and their caregivers a clear and grounded introduction to what the disease really is, what to expect, and how to navigate the realities of life with Parkinson’s.
Alongside Parkinson’s Pilot, we’re building a Support Group Facilitator Training program to certify patients, caregivers, and professionals to lead consistent, effective groups online and in-person. PRI will eventually manage a nationwide network of facilitated support groups to give everyone caught in Parkinson’s crosshairs a community of real people dealing with the real-life challenges so many now face alone.
PRI Stretch Goals
For the long term, we’re aiming to improve the quality of care Parkinson’s patients receive by providing tools and guidance to all healthcare providers to understand and treat the seemingly disparate symptoms as part of a coordinated framework of unified “care clusters.”
We also want to help expand the nationwide pool of Movement Disorder Specialists to meet the rapidly growing PD patient population consistently and effectively.
In addition, we’re seeking ways to build dedicated Parkinson’s care centers within senior living facilities, similar to memory care centers already in existence.
We want to find ways to make in-home care and community companionship easily available to people who are isolated in their disease and needing human connection.
Systems to manage Parkinson’s are lagging behind those for other degenerative diseases. It’s time those facing its challenges were given access to consistent care and support, and tools tools to build personal resilience, wherever they live.