By: Grace Huff
Living with Parkinson’s disease (PD) is a journey, one that is filled with challenges, adjustments, and, most importantly, the need for support. At the Norman Fixel Institute for Neurological Diseases, we recognize that no one should navigate this condition alone. That’s why we’re excited to share more about our new Parkinson’s Disease support groups, providing patients and caregivers with a safe, encouraging space to share experiences, gain valuable insights, and connect with others facing similar challenges.
Why are support groups important for people with Parkinson’s?
Support groups empower individuals with PD and their caregivers by providing access to shared experiences, expert advice, and emotional support. Many people living with PD express feelings of isolation and uncertainty, especially after receiving a diagnosis. Through these groups, participants can find a sense of community, reassurance, and practical strategies for managing their condition.
Caregivers, too, often experience stress, burnout, and emotional exhaustion. By offering a space specifically for them, we ensure that those caring for a loved one with PD have the support they need to care for themselves as well.
Creating distinct Parkinson’s support groups
For years, Parkinson’s disease (PD) has been widely misrepresented as a condition that primarily affects older white men. However, the reality is that PD impacts individuals from all backgrounds, ages, and walks of life. At the Fixel Institute, we are committed to breaking these stereotypes and ensuring that every person affected by PD has access to a support system where they truly feel understood and represented.
The Young-Onset PD, Women’s, and Black PD support groups were developed in direct response to the unique experiences, challenges, and needs of these communities. Many of these groups originated after patients at the Fixel Institute expressed a desire for spaces where they felt they could better connect with others who shared their lived experiences.
The Black PD Support Group was inspired by local outreach programs like Power in Knowing, PD Movers, and the Parkinson’s Foundation’s diversity mission. Representation matters, and this group ensures that Black individuals with PD have a safe and supportive space to discuss their experiences, access resources, and connect with others who understand the cultural and medical challenges they may face.
Similarly, the Women’s PD Support Group was created because women with PD often experience different symptoms, challenges, and treatment responses compared to men. By providing a dedicated space for women to gather, share, and support one another, we foster a community where they feel seen and heard.
As Heather Martin, support group coordinator, explains:
“Research shows that not everyone finds support in the same way, and in fact, the traditional in-person support group can be isolating for many. So these two groups were created based on research and feedback from those in the PD community.”
By offering diverse and tailored support options, we are ensuring that everyone affected by PD, regardless of their background, can find a space where they belong, connect, and thrive.
What do patients and caregivers say about support groups?
Our goal is to make a real difference in the lives of those affected by Parkinson’s disease. Here’s what some of our participants have shared:
“Before joining the group, I felt like I was facing Parkinson’s completely alone. Meeting others who understand what I’m going through has made a huge difference.”
“The educational sessions have helped me feel more in control of my symptoms. I’ve learned exercises that actually improve my movement and help me feel stronger.”
“As a caregiver, I didn’t realize how much I needed a space to talk. This group has given me tools to manage stress and connect with others who understand what I’m going through.”
Structure and format of support groups
The Norman Fixel Institute’s Parkinson’s Disease Support Groups are structured to provide inclusive, meaningful, and supportive spaces for individuals living with Parkinson’s and their caregivers. Each group is designed to meet the specific needs of different communities, offering opportunities for education, connection, and open dialogue.
- Black PD Support Group (Virtual)
- 📅 Format: Monthly, one-hour virtual session
- 🧑⚕️ Led by: Heather Martin & Noheli Bedenfield
- 🎤 Structure: Each session focuses on a planned monthly topic, often featuring a guest speaker to provide expert insights. After the presentation, participants engage in open-ended fellowship and sharing, creating a space for support and connection.
- Women’s PD Support Group (In-Person)
- 📍 Format: In-person, restaurant locations vary across town
- 🧑⚕️ Led by: Heather Martin (Coordinator)
- ☕ Structure: Unlike traditional support groups, this is an informal gathering where women with PD can meet, connect, and share their experiences in a relaxed setting. There is no set educational topic, allowing participants to focus on storytelling, community building, and personal support.
Each support group is uniquely structured to provide a welcoming, supportive environment, ensuring that participants feel heard, understood, and empowered in their journey with Parkinson’s.
The Fixel PD Support Groups are open to:
- Newly diagnosed individuals looking for guidance and reassurance
- Long-time PD patients managing symptoms and seeking connection
- Caregivers and family members who need support and resources
- Anyone looking for expert guidance, emotional support, or practical strategies to live well with PD
We believe that Parkinson’s is a journey best traveled together. Our support groups provide a space to share, learn, and connect, offering emotional support and expert advice to help patients and caregivers navigate PD with confidence.
Whether you are looking for educational resources, emotional encouragement, or simply a place to talk with people who understand, we invite you to join our PD support network. Together, we can build a community that uplifts, empowers, and supports each other every step of the way.
📌 For more information or to sign up, click here
