These symptoms of Parkinson’s disease are often unpredictable and difficult to control. They worsen over time and eventually interfere with a person’s daily functioning.
Support groups—which can be small or large, and meet virtually or in-person—can help a person find strategies to cope with and adapt to the day-to-day struggles and demands of living with PD.
They may also reduce stress, serve as a source of encouragement, and improve quality of life. Joining one is also often a good way to learn about emerging PD research or therapies.
Here, we’ve rounded up some Parkinson’s disease support groups. The information provided is hopefully a good stepping stone for finding comfort and guidance.
Membership fee: FreeStructure: Online forum, seminars, classes, in-person eventsDetails: Offers a large network with support groups nationwide, online communities for caregivers, and educational seminarsThings to consider: Not a very active Facebook page
The American Parkinson Disease Association (ADPA) is reportedly the largest grassroots organization devoted to fighting Parkinson’s disease.
The ADPA, along with Smart Patients, a support site, formed an online forum. Within this free discussion forum, patients with PD, loved ones, and caregivers can socialize, learn more about PD, and share tips and coping strategies about living with the disease.
Besides its friendly and warm online support community, the ADPA has move than 1,400 free support groups nationwide. Each one is unique—some are devoted to people diagnosed with PD at a young age while others focus on caregivers or family members of people with PD.
The ADPA also offers exercise classes, such as Tai Chi, non-contact boxing, yoga, and dance, as well as educational seminars and social meet and greet events.
Membership fee: FreeStructure: Online forumDetails: Easy-to-use interface, small and intimate support group, and provides access to doctorsThings to consider: It’s not a very active group
The DailyStrength Parkinson’s Disease Support Group is a free and welcoming online support community with more than 400 members and 3,000 posts.
The mission of the group is centered around empowering and inspiring each other to overcome PD-related and life challenges.
Overall, the DailyStrength website is easy to navigate, and registration is straightforward and quick. Posts are informational, practical, and thoughtful. This is, perhaps, a good place to start for people looking for a smaller, more intimate online support group that is not overwhelming or associated with a national organization.
Even though the site is not moderated, to keep the support group safe and positive, DailyStrength has a set of guidelines that the members are asked to follow.
Membership fee: FreeStructure: Online forum, in-person eventsDetails: Various discussion groups on specific topics, health and wellness classes, and free educational resourcesThings to consider: Posted questions may not be answered immediately
The Parkinson’s Foundation was formed from the merging of two other foundations—the National Parkinson Foundation and the Parkinson’s Disease Foundation.
The Parkinson’s Foundation has a vast network of free, in-person support groups located throughout the country. Most of them are for anyone living with PD, but some are geared toward a certain audience (i.e. people with youth onset PD).
There’s also a free online support community called PD Conversations. Here, individuals can connect with others living with PD, as well as get their questions answered by PD experts. The online community is broken up into discussion groups—newly diagnosed, symptoms of PD, Spanish-speaking patients, and much more.
Health and wellness classes and free educational resources are offered through its local networks. The organization also raises awareness and funds through various gatherings, such as its annual fundraising event called the Moving Day Walk.
Membership fee: FreeStructure: Online forumDetails: An active community with a large network with more than 29,000 members, and there are information sharing featuresThings to consider: Data collected may be shared with partners
The Parkinson’s disease support forum on PatientsLikeMe is a free online support community of close to 30,000 members.
Members can voluntarily report aspects of their disease, for example symptoms, medications, lifestyle habits, and diet. This data is collected and shared in the form of basic, colorful charts. Members can also sift through the data using easy-to-use search and filter tools.
Besides sharing and learning from one another, individuals can socialize and foster connections or friendships. Profiles on the forum (only visible to members) contain information like gender, age, hometown, and a picture (which makes it more personal). Members can also include a short bio about themselves and a list of interests.
Any information shared in the forum is not protected by HIPAA, because it is voluntarily provided. Also, other members can send private messages—but just through the forum, and not via email.
Membership fee: FreeStructure: In-person support groups, virtual Zoom support groups, chat forums/message boardsDetails: Offers both in-person and virtual support groups, educational videos and resources, and support is available for care partnersThings to do: A survey needs to be completed first before you can participate in the online community
The Parkinson’s Movement Disorder and Alliance (PMD Alliance) is a nonprofit organization that focuses on characteristics like empathy, creativity, resiliency, and shared learning.
It also has a wealth of support and educational services. Aside from online programming and Zoom support groups, this organization also offers various in-person support groups located throughout the country.
Additionally, the organization features numerous educational programs like “Lunch with Docs,” in which individuals can meet with a movement disorder specialist virtually over lunch from the comfort of their own home.
There are free workshops across the country called In Sync for supporting and teaching people interested in developing their skills as a support group leader.
There, people can learn skills and build confidence in designing and leading their own support group (including exercise-based support groups) for Parkinson’s disease or other movement disorders. Leadership experts and healthcare professionals also provide guidance through informational presentations.
Membership fee: FreeStructure: Facebook groupDetails: A large, active community where family members can join and participate, and posts are only visible to membersThings to consider: A Facebook account is required
Parkinson’s Community operates a Facebook support group with more than 18,000 members and hundreds of posts each month.
This free and active group is private, meaning it requires permission to join, and posts are only visible to members. It’s open to people living with PD and their family members.
While the company that runs this community (Research Catalyst) is focused on finding study participants for various research studies, individuals can simply join the Facebook group for support and encouragement.
Besides the online support group, Parkinson’s Community offers other resources as well. People can qualify to speak to a Parkinson’s disease advocate about their personal journey with PD and see if they (or their loved ones) qualify for different PD-related clinical trials.
Membership fee: FreeStructure: Online forumDetails: Helpful, welcoming community, simple-to-use interface, and access to other groups and off-topic discussions. Things to consider: The group is not very active
NeuroTalk is a free and casual online support group for people with neurological disorders, including Parkinson’s disease.
After registering and creating a username and password on the website, individuals can enter the Parkinson’s disease forum. Many of the posts have more than hundreds of thousands of views.
The posts vary widely in content, from talking about symptoms and therapies to discussing the biology behind Parkinson’s disease. People also use the site to request or offer medical equipment, socially connect, tell jokes, or inspire one another through art or poetry.
Additional reporting by Stephanie Valera.
