Support Groups for Parkinson’s can be found both locally and online. Many people find talking to others that are in the same situation as them to be very therapeutic. You can also pick up ideas that may help in making daily tasks easier.
Websites, internet groups, and forums serve as online support for many patients. They can be informative and inspiring, and often reduce the feeling of isolation that can make life with Parkinson's more difficult. It's often possible to join the conversation at whatever time works for you, allowing you to take part even if you have a busy schedule. Many local groups may not meet during times of high flu or virus transmission.
- NeuroTalk has a robust Parkinson's disease community.
- Caring.com hosts a Parkinson's support group.
- HealthUnlocked has Parkinson's community pages.
- Smart Patients Parkinson's Disease Community offers self-care tips.
- PatientsLikeMe has a Parkinson's forum.
- Facebook groups are a popular venue for conversation. Ask your physician or local support group if they know any you may wish to join, or start your own.
- Websites of national or local Parkinson's disease organizations may have other online support group resources.
Be sure to check with local resources before trying to attend meetings or activities. Some groups are currently suspended due to the COVID outbreak.
- Parkinson’s Organization has a variety of local events, learning, and online support.
- American Parkinson’s Disease Association scroll down to see classes, exercise, and group events including boxing.
- Allina A concise list of local support groups sponsored by APDA and Allina
Common Misconceptions about Support Groups
From the Michael J Fox Foundation here are some common misconceptions of support groups for Parkinson’s.
Misconception: Support groups are all business. Reality: Meetings often feature a speaker and an informative discussion, but many have fun at meetings, too. Several commenters shared that as organizers, they also joke around and enjoy the group's company. Good food and drink help, of course.
Misconception: In a support group, all you do is sit and talk. Reality: Exercise classes can be support groups, too. If you prefer to let your feelings out through dance, yoga, or even boxing, exercise classes for people with Parkinson's might be the right fit for you. Plus, research strongly suggests that exercise can improve several of Parkinson's symptoms.
Misconception: If you have young-onset Parkinson's, you won't be able to relate to anyone in a support group. Reality: Sometimes, meeting people from different backgrounds with a shared experience can be meaningful. Or, if you live in a larger city, you may be able to find a group specifically geared toward people with young-onset Parkinson's.
Misconception: Meetings are just for people with Parkinson's. Reality: Support groups can be just as beneficial for loved ones and caregivers. Your community may have a group specifically for caregivers, or, see if a local PD group is open to family members.
Misconception: You have to meet in person. Reality: An online support group can be a great option if there isn't an in-person group in your area that you feel comfortable with. Try looking for groups on Facebook or via this list from Stanford University of online support groups.
Misconception: If you feel uncomfortable at a support group, you should force yourself to keep going. Reality: Know that you can go when you're ready. In the first few months after a diagnosis, you may not feel up to meeting others and learning more about the challenges PD can involve. If it doesn't feel right, take a break and reassess how you feel after six months or a year.
Many of us have an almost endless need to know more about something that is impacting us or a loved one. The Mayo Clinic is considered one of the finest places in the world in the treatment of Parkinson’s disease. After you have learned about the disease and have a better understanding of it, you may want to look into some of the research that is being done.
For additional information and resources on Parkinson's disease and other senior-related care, check out our website!
Michael J Fox Foundation
Parkinson’s Disease Organization