Parkinson’s disease is a progressive neurological disease that affects your movement, often causing symptoms such as tremors, slower movement, stiffness, and loss of balance. The symptoms and the progression of the disease vary from person to person, but it is a lifelong condition. As a result, it can take people some time to adjust after they receive their diagnosis.
One resource that can really help is a support group. In fact, support groups can be beneficial for people with Parkinson’s disease and for their family members and caregivers. Every group is a little bit different, so you may even want to try out a couple of support groups to find one that makes you feel comfortable.
You may prefer the online support group experience, or you may feel comforted by seeing other people in your situation face to face. Beyond that, you might find that groups that tend to focus on particular issues or even people in certain stages of life might meet best meet your needs.
Essentially, if a support group meets your specific needs, it’s the right group for you.
This is not an exhaustive list, but it should get you started if you’re searching for a support group for yourself or a loved one.
Best variety of support groups
The American Parkinson Disease Association offers more than 1,400 opportunities all over the country for people with a range of concerns.
Best support groups for veterans
The Veterans’ Administration’s Parkinson’s Disease Research, Education and Clinical Centers offer support groups for veterans in communities across the nation.
Best Facebook support group
Parkinson’s.Community on Facebook can connect you with others online via this active community.
Best online group for peer support
PatientsLikeMe has a private unmoderated group designed especially for people with Parkinson’s to share what life is really like.
Best online support group for the newly diagnosed
The Parkinson’s Foundation has an online group that focuses on issues confronting people with recent diagnoses of this disease.
Best online support group for care partners and family members
Smart Patients Parkinson’s Disease Online Community was launched by the American Parkinson Disease Association and may help you care for your loved one with Parkinson’s.
Best support group for people with young onset Parkinson’s
The Parkinson & Movement Disorder (PMD) Alliance’s YOPD Connections gives you the chance to connect by video or phone with others who are “too young” to have this disease.
Best support group for people living alone with Parkinson’s
The PMD Alliance’s Flying Solo group may be a great resource if you’re facing this journey by yourself.
Best way to find a local support group
You might also try looking for a support group that’s close to home so it’s easy for you to get involved. Search the PMD Alliance’s online database of support groups divided by state. You could also ask your doctor for recommendations.
Although every support group for people with Parkinson’s disease is designed to help you find the support you need to keep on living your life, every support group is also unique.
What to expect from a support group
Some in-person groups are small, others are large. Some groups meet during the day, while others gather in the evening or even on the weekend. Some in-person groups meet in a community-based setting, like a YMCA, a library, or a church basement, while others may hold meetings in a hospital conference room, a clinic, or a rehabilitation center.
Meanwhile, online support groups also vary in size and in demographics. Some groups have been around a long time, with members who have formed friendships over the years, while others may be relatively new groups with people who are still getting to know each other.
One thing all support groups have in common in this: They want to help people affected by Parkinson’s disease.
Topics you might discuss
A support group may discuss a variety of topics centered around living with Parkinson’s disease, including accepting your diagnosis and finding ways to live your best life, as well as issues that may be important to caregivers. That might include:
- challenges you have encountered and how to handle them
- adaptations you’ve had to make in your daily life, such as with housework or grooming
- how you deal with feelings of loneliness or grief
- your experiences with depression and anxiety
- issues related to sexuality and relationships with spouses or partners
- relationships with adult children or other relatives
- side effects from medications how they have affected you
- new research into treatments
- mobility concerns
- how to manage stress
- talking to a loved one about the progression of symptoms
If you are a discussion moderator
If you’re a moderator or a facilitator for a support group for people with Parkinson’s disease, or family members or caregivers for people with Parkinson’s disease, you play a very important role in helping the group to be a success. You can start by setting an agenda for each meeting so everyone knows what to expect.
A few other tips for getting the conversation flowing:
- Start with opening questions that help people to settle in and get comfortable.
- Make sure everyone knows the ground rules and expectations.
- Give everyone the opportunity to speak and to be heard.
- Encourage members to listen when others are speaking.
- Be respectful if some people choose not to share.
- Use a handheld microphone in case some people are soft-spoken.
- Develop some strategies to handle situations in which a few people monopolize discussions.
- Ask group members to brainstorm topics for future discussions or suggestions for guest speakers.
You also might check out resources from organizations like the Parkinson’s Foundation that can help you plan your meetings, encourage participation, and foster the connections that are so vitally important to support group members.
If you’re new to talking in a support group, you may feel a little (or a lot!) uncertain. That’s totally normal, as any experienced support group member can tell you.
First, contact the facilitator and ask about the group. Try to learn as much as you can about the group culture and what will be expected of you. Some groups will assign you an informal buddy to help get you acclimated to the group, so you might ask the moderator about that possibility.
Then when you get to your first meeting, consider these strategies to help you get integrated and begin sharing:
- Listen first. When you attend your first meeting, start out by just listening. Listen to the facilitator, listen to group members as they discuss their concerns, and listen to the other group members as they respond to each other.
- When it’s your turn to talk, acknowledge how you’re feeling. It won’t surprise anyone that you may be feeling awkward or unsure. Many people feel uncomfortable talking about themselves or their family members in a setting that’s full of strangers.
- Don’t be afraid to ask questions. That’s what support groups are for. You may be able to glean a lot of wisdom from people who’ve been there before you.
- Be respectful. Support groups require trust between members, and a good way to build that trust is by showing that you respect the other members of the group and their experiences.
- If you don’t want to talk about something, say so. You might not be ready to discuss something very sensitive, and that’s OK. It may take you a few sessions (or even longer) before you start to feel more comfortable.
Other resources to explore
You may be looking for additional information that can help you or your loved one on the journey with Parkinson’s disease. Try these resources:
- American Parkinson Disease Association. The APDA offers a wealth of resources about the disease, education and support programs, and health and wellness activities. The website also offers helpful resources for talking with family members, including young children, about the disease.
- The Michael J. Fox Foundation for Parkinson’s Research. Named after the actor who starred in the “Back to the Future” movies, the foundation offers information about the disease, clinical studies, funding opportunities for research and grants, and opportunities to contact your elected representatives to advocate for more funding for research into treatments.
- Parkinson Alliance. This organization’s mission is to raise funds for research and the development of new therapies to help improve the lives of people with Parkinson’s.
- The Parkinson’s Foundation. This foundation provides a repository of information about Parkinson’s disease, including resources to help handle legal, financial, and insurance concerns, and resources for caregivers. You can also learn about ongoing research into treatments and possible cures, find ways to support others in their efforts to fundraise, or even learn how you can launch your own fundraiser.
- VA Centers of Excellence for Parkinson’s Disease. You can access resources for veterans affected by Parkinson’s disease through this initiative from the Department of Veterans Affairs.
Support groups, both online and in-person, can be invaluable resources for people with Parkinson’s disease, and their caregivers and loved ones. You might have to try different groups until you find one that works for you.