For individuals living with Parkinson’s disease, social isolation can be a significant challenge. The Parkinson’s Foundation defines Parkinson’s disease (PD) “as a neurodegenerative disorder that affects predominately the dopamine-producing (dopaminergic) neurons in a specific area of the brain called substantia nigra”. Symptoms will develop slowly, typically over years, and vary from person to person. Individuals with PD may experience the following movement-related (“motor”) symptoms:
People with PD may also suffer symptoms unrelated to movement (“non-movement”) such as depression, anxiety, apathy, hallucinations, constipation, orthostatic hypotension (sudden drop of blood pressure when standing), sleep disorders, loss of sense of smell, and cognitive impairments.
Individuals are often more impacted by non-motor symptoms than motor symptoms, but the social stigmas of motor symptoms can further impact non-motor symptoms. For example, tremors, difficulty speaking, and mobility issues often lead to self-consciousness, causing many to withdraw from social interactions, which can further impact feelings of depression and anxiety. Recognizing this need for connection, Mary Tiffin, a Licensed Clinical Social Worker for PsychoGeriatric Services, initiated a Parkinson’s support group within one of the facilities she visits to aid residents who often suffer in silence.
Tiffin noticed the need for support because many residents with PD at the skilled nursing facility she attends were prone to self-isolate, often eating alone in their rooms due to embarrassment over their tremor symptoms. Residents were self-conscious about eating in communal mealtime areas because they feared other residents staring at their shaking hands and sometimes spilling food. This self-isolation created feelings of depression and loneliness, which would only further exacerbate the symptoms of PD. Tiffin envisioned a space where residents could come together, share their experiences and coping methods, build a supportive community, and allow them to break free from the harsh stigmas of PD.
The group, known as PANS (Parkinson’s and Neurodegenerative Support), was created to foster connection, provide resources, and encourage open discussions about the challenges and anxieties associated with PD. Residents elected their leaders, reinforcing their sense of ownership and community. Tiffin speaks proudly of the residents taking charge of the group, dictating topics of conversation and activities. In her words, she is just a facilitator; this is completely their group.
The group’s primary aim is to reduce isolation and provide emotional support and a sense of belonging. Meetings held weekly on Thursdays offer participants a safe space to express their thoughts, speak openly about worries and anxieties, share coping strategies, and learn from each other. Topics include stress management, relaxation techniques, and overcoming the emotional impact of the disease.
One unique aspect of the meetings is the communal enjoyment of ice cream—a simple yet powerful way to help residents feel comfortable socializing without fear of judgment. Typically, all the group attendees self-isolate in their rooms during mealtime because of social anxiety, but no one can resist a little ice cream. As Tiffin tells the residents, “You scream, I scream, we all scream for ice cream.”
In the past, residents avoided eating around others due to concerns over shaking and spilling. But they now enjoy eating ice cream together within the group’s safe space. The simple act of sharing a treat has become a powerful symbol of acceptance and camaraderie.
The initial start of the group came with challenges. While Tiffin had experience leading other support groups, launching a Parkinson’s specific group required significant preparation. Finding an appropriate meeting area within the facility accessible by wheelchairs while still affording privacy for tough discussions was one of the more difficult challenges. However, the sessions became smooth and rewarding once these initial hurdles were overcome.
The group’s success is evident not only in its members’ enthusiasm but also in feedback and noticeable behavioral changes by facility staff. Caregivers and staff have noticed that participants look forward to their Thursday meetings, expressing excitement and anticipation. The support group has become more than just a meeting—it’s a newfound community where members feel heard, included, and valued.
Before the group was established, many residents with PD isolated themselves. Now, caregivers and staff have reported that members talk about their weekly meetings with excitement and anticipation days in advance. A particularly inspiring outcome of the group is the residents’ sense of ownership of the group and the topics discussed. Instead of relying solely on facilitators, members have elected their leaders, assigned them nicknames, and organized discussion topics for each session. This empowerment has helped restore a sense of independence and control—something that Parkinson’s often takes away.
When asked what Tiffin’s future goal or plan for the group is, she states that the only future plan for the group she has is to host an outdoor meeting when the weather improves; she believes that spending time outside can be a great mood booster and a great combatant for feelings of depression and anxiety. Other than that, the group runs itself, with members choosing topics and leading discussions; she is just along for the ride and there to offer support.
Although it’s still in its early stages, the group has already made a lasting impact. Reducing isolation and increasing social interaction contribute to better mental health, which, in turn, may positively affect physical well-being. As the group continues, these benefits will likely grow, reinforcing the importance of community-driven support systems.
Tiffin’s advice is simple for anyone considering starting a similar support group: “Just do it!” While some preparation is involved, the impact is profound. Resources such as the Michael J. Fox Foundation and the Parkinson’s Foundation can provide valuable guidance, information, and support. These resources can assist you in getting off the ground and providing initial discussion topics, but the main goal is to develop a community and a sense of togetherness with shared experience. As Tiffin beautifully puts it, “When we lift each other, we all go for the ride.”
If you are interested in starting a Parkinson’s Support Group or would like to learn more about Parkinson’s Disease, below are some helpful resources:
Parkinson’s Foundation: https://www.parkinson.org/
The Michael J. Fox Foundation for Parkinson’s Research: https://www.michaeljfox.org/
American Parkinson Disease Association: https://www.apdaparkinson.org/
