Finding care for Parkinson’s disease (PD) can be difficult due to a shortage in specialized care, especially for those who live in rural areas. There are one million Americans living with Parkinson’s and only 660 movement disorder specialists currently practicing in the U.S.  

With limited access to movement disorders specialists, most people with PD find themselves visiting a general neurologist or primary healthcare provider for their Parkinson’s care. However, across all care settings, people with PD report feeling their healthcare providers may not fully grasp the intricacies and daily challenges that come with Parkinson’s.   
 
The Parkinson’s Foundation is dedicated to educating and training our professionals about best practices in quality PD care. Yet, nobody understands the daily challenges of living with Parkinson’s better than those living with it.  

We asked people with Parkinson’s on our social media channels what they wish health professionals understood about living with PD. This is what they said: 

“I wish doctors would be more understanding that Parkinson's also affects their ability to process things sometimes. My dad would appear to be ‘thinking' about what the doctors said, but he was really struggling to understand what exactly was being said.” - Dawn    

Some people with PD experience cognitive impairment that results in slowness of memory and thinking. Symptoms of cognitive impairment may not always be noticeable. However, this can influence the way people with PD understand information and may leave them feeling confused or overwhelmed. 

“I wish they understood there are a lot of non-motor symptoms — hypotension, constipation, mood disorders, cognitive issues, etc. These need to be considered and monitored during regular appointments as well as those with their movement disorder specialists.” - Deanna 

While non-movement symptoms are invisible, it's important to realize that they are common and many people with Parkinson’s find them more troublesome and disabling than movement symptoms. 

“Healthcare professionals need to address mental health issues that can be caused by Parkinson’s itself.” -Leann 

Mental health changes, like depression, anxiety and apathy are part of Parkinson's itself, resulting from PD-related changes in brain chemistry. Treating these symptoms is one of the most significant ways to improve quality of life for people living with Parkinson’s.  

“This disease is very complex, not just a movement disorder. It affects your brain, your confidence, your sense of self, and there are day-to-day changes.”  -Michele 

Finding a mental health counselor is a step towards bettering your mental health and wellbeing. The counselor you partner with should make you feel safe and validated while helping you navigate life with PD.  

“They should combine medical care with social worker care. Don't tell someone their life is about to radically change but provide nowhere to start or available services.” -Lee 

Building a care team that is well-versed in PD will help guide you and improve your quality of life. People living with Parkinson's benefit most from a comprehensive, team-based healthcare approach. The Parkinson's Foundation promotes an allied health team approach across our Global Care Network.  

“I wish they would believe patients and their caretakers when they mention symptoms or other issues.” -Lindsey 

A 2022 poll from Mitre-Harris found that 52% of individuals in the U.S. feel their symptoms are “ignored, dismissed, or not believed” when seeking medical treatment. That number rises to 60% within the Hispanic community.    

“They need to know the importance of taking medication at the right time when in the hospital. It was a nightmare trying to ensure that my mother got her medications on time.” - Roisin 

People with Parkinson’s need to take their medication at the same time daily to avoid “off times,” periods of time when the effect of levodopa medication wears off, causing a return of motor or non-motor symptoms. This is especially important for healthcare providers in hospitals to recognize, as they are more likely to be distributing daily medication. Our Hospital Safety Guide is designed to help people with PD and their care partners advocate for high-quality care in the hospital. 

“In general, healthcare professionals should understand more about the signs which indicate someone has Parkinson’s. Internists, even neurologists often miss the signs. We need better education for a heightened awareness of the many early symptoms of PD. Not everyone shows up with tremor.” -Donna 

Learn how to recognize ten early signs of Parkinson’s in this fact sheet. 

“Refer early for speech and swallowing changes!” -Julia 

Addressing Parkinson’s symptoms early, such as speech and swallowing changes, is extremely important. Without intervention, swallowing difficulties can be especially dangerous.  

“We are all very different, and whatever they learned in a book or heard from their last patient may not apply to me. Everything we tell our doctors pales in comparison to what we go through most days. We aren’t liars or exaggerating; we need a little relief.” -Esther 

All people with PD deserve to receive proper care. Our PD stories allow people to share their stories and advocate for themselves. You can share your story here. 

For Health Professionals 

The Parkinson’s Foundation is here to help health professionals provide quality Parkinson’s care to their patients living with this disease. Explore our many resources for health professionals, including accredited online courses. Visit Parkinson.org/Care to learn more about our care priorities and programs.   

If you or a loved one is looking for Parkinson’s expert referrals, contact our Helpline at 1-800-4PD-INFO (1-800-473-4636). 

Black and African American people living with Parkinson’s disease (PD) often face significant health disparities, limiting access care. To bridge this gap, the Parkinson’s Foundation launched Parkinson’s Journey in Color: Advancing Research and Care in Your Community — events tailored to meet the unique needs and experiences of local Black and African American PD communities. Each event offered in-person genetic testing at no cost through the Foundation’s landmark genetics study, PD GENEration: Mapping the Future of Parkinson’s Disease.  

A Collaborative Approach Rooted in Community 

Part of our mission is to amplify the voices of those living with Parkinson’s. Parkinson’s Journey in Color was designed through a collaboration with Parkinson’s Foundation research advocates and staff. Research advocates are volunteers who complete Parkinson’s Foundation training to help ensure PD research is more efficient and effective. 

When it came to Parkinson’s Journey in Color, research advocates helped guide every aspect of the events — from shaping topics to selecting central location. They also identified and worked with community partners to promote and participate in the events, ensuring that the program resonated with local audiences. 

“Working alongside advocates who are all people in the PD community, we recognized their unparalleled understanding of their communities and cultural values, allowing us to create an inclusive and empowering event that reaches more people with Parkinson’s,” said Evelyn Stevens, Parkinson's Foundation senior director of community engagement.  

The research advocates who helped shape these events were trained in collaboration with Morehouse School of Medicine in September 2023 (learn more in this article). These advocates, who are people living with Parkinson’s and care partners who identify as Black or African American, brought their experiences, insights and cultural expertise to the forefront of Parkinson’s Journey in Color events. 

Tailored Programming to Address Community Needs 

The Parkinson’s Foundation hosted three Parkinson’s Journey in Color events in 2024.  

1. Atlanta, GA: Our March 9 event was held alongside Morehouse School of Medicine and Emory Brain Health Center. Fifty-five people attended, with most saying it was their first Parkinson’s Foundation event. Ten people completed PD GENEration testing at the event. 

2. Charlotte, NC: Our September 14 event hosted 51 attendees and was held at The Park Church, a recommendation by a research advocate that allowed the Foundation to strengthen its connections with faith-based leaders and trusted sources within the Black and African American community. Attendees shared their experiences with participating in research, including PD GENEration. The event featured a “Connections to Care” table that provided resources for local neurologists and an opportunity to meet with local healthcare professionals experienced in PD.  

3. Chicago, IL: Our November 16 event hosted 45 attendees and was held at the University of Illinois Chicago. Part of its focus was on research and care, with four PD GENEration sites in attendance that provided attendees with information and resources for care and PD GENEration testing. Participants also had the opportunity to meet with movement disorders specialists from Northwestern University, Rush University (both Parkinson’s Foundation Centers of Excellence) alongside University of Chicago and University of Illinois at Chicago.  

“Each of our journeys are quite colorful. In Charlotte, one of our church leaders shared with me, ‘who knew so many African American people have a PD diagnosis?’ I shared there are more as well. That's what this advocacy is all about,” said Lisa Fletcher, a care partner and the Parkinson’s Foundation research advocate who suggested partnering with a local church.  

Openly Discussing Critical Parkinson’s Topics 

While each event featured a customized list of topics, all shared essential PD information including:  

• Parkinson’s Disease 101: A session led by a movement disorders specialist (a neurologist experienced in PD) who reflected the community’s identity, fostering relatability and trust. 

• The Importance of Research: A candid discussion that acknowledged the historical mistreatment of the Black and African American community in research while highlighting progress and current safeguards to rebuild trust. 

• Introduction to PD GENEration: Information on genetic testing and counseling opportunities to empower participants with knowledge and tools for proactive care. 

• Lived Experience Sharing: Stories and insights from local people living with Parkinson’s and their care partners, providing inspiration and a sense of shared understanding. 

The Black Community & Parkinson’s  

Black and African American people diagnosed with Parkinson’s have unique experiences and needs when it comes to living with PD. Research shows that Black people with PD are diagnosed at a later disease stage than white people. 

Research also shows that Black people are less likely to be diagnosed compared to other racial and ethnic groups. This is in large part due to Black communities being historically excluded in the healthcare system and research studies. Because of this, the full impact of the disease within the community is still unknown. 

The Parkinson’s Foundation works to bring awareness to these disparities and more so we can make health care more accessible across the PD community, through reaching and supporting populations of focus, including those who identify as Black and African American. Explore our resources and information that can help you find a specialist, build a care team and find local resources, like support groups and exercise classes. 

Learn More 

Building a Stronger Future Together 

“Parkinson’s Journey in Color represents more than just an education and care event— it is a testament to the power of community-driven solutions and advocacy,” said Evelyn. “Through centering the voices of Black and African American individuals living with Parkinson’s, we are fostering a more inclusive and equitable approach to care, research and support.” 

Through initiatives like this and designing new ones that reach more populations of focus, the Parkinson’s Foundation aims to build stronger connections within local communities, address disparities in care and empower individuals with the knowledge and resources they need to thrive.  

Find ways to get involved with the Parkinson’s community that works for you — from attending local Parkinson’s Foundation events to joining a research study.