How to start and/or find a support group for people living with Parkinson’s or their unpaid carers in Australia

Whether you are newly diagnosed, well-versed in Parkinson’s, or a care partner, finding the right support group can make a significant difference. Social activities provide a valuable network, combat feelings of loneliness, and connect you to new information. Being diagnosed as young onset, poses its own challenges in finding people a group of people that look like you. Attending regular Parkinson’s Supports Group may be confronting as they are mainly made up of older persons.

Why support groups matter

Support groups offer a safe space for people living with YOP and their carers to share experiences, gain emotional support, and access valuable resources. They help combat social isolation, provide a sense of community, and offer practical advice on managing the condition.

Choosing the right support group

Not every support group will be the right fit. Consider your preferences for:

  • Age and life stage.
  • Whether the group is for people living with Parkinson’s, carers, or both.
  • In-person or online meetings.
  • Educational or social focus.
  • General Parkinson’s groups or young onset Parkinson’s groups.
  • Meeting frequency and location.

If a group does not feel right, try another. Different groups have different cultures, formats and member demographics. Support groups vary from informal coffee catch-ups to structured educational sessions.

Types of Parkinson’s support groups

You do not need to limit yourself to a traditional support group. Options include:

  • Peer support groups.
  • Young onset Parkinson’s groups.
  • Carer-only groups.
  • Exercise groups.
  • Walking groups.
  • Boxing for Parkinson’s classes.
  • Dance programs.
  • Parkinsong and other choir or singing groups.
  • Art therapy groups.
  • Online communities.
  • Condition-specific groups, such as Deep Brain Stimulation (DBS) or advanced therapies groups.

Many people build support networks through exercise, special interest and recreational groups rather than formal support meetings.

Support for unpaid carers

Carers often benefit from having their own peer support network.

Carer Gateway offers free peer support groups, an online community forum, counselling and coaching services for unpaid carers across Australia.

How to start your own support group

  1. Research if a group already exist in your area? If so, can you join it?
  2. Identify your needs: Determine the specific needs of your group. Will it be for people with PD, carers, or both? Consider the format—virtual or in-person.
  3. Find a venue: Secure a location for your meetings. This could be a community centre, church hall, or even a virtual meeting space. Contact local government to see if facilities may be provided in-kind.
  4. Set a Schedule: Decide on a regular meeting time and frequency that works for most members.
  5. Promote your group: Use social media, local newspapers, and community boards to spread the word. Reach out to local healthcare providers for referrals.
  6. Plan your meetings: Prepare a structure for your meetings, including guest speakers, discussion topics, and activities.
  7. Gather resources: Collect useful materials, such as brochures, books, and contact information for local services.

How to find a support group near you

  1. Contact Local Organisations: Reach out to community organisations or your state-based Parkinson’s association, and local hospitals for information on existing support groups.
  2. Use Online Resources: Facebook Parkinson’s groups, Young Onset Parkinson’s groups, Carer groups are all searchable online.
  3. Ask Your Care Team: Your neurologist, general practitioner or others in your care team may know of local support groups and can provide referrals.
  4. Join Online Communities: Online communities can be especially useful if you live in a rural or remote area, you work full-time, you have mobility challenges or prefer anonymity. It may also be easier to connect with people in a similar life stage. Virtual support groups can be a great option if you’re unable to attend in-person meetings.

Connecting with others who understand Parkinson’s can provide practical information, social connection and peer support. If a suitable group does not exist in your area, consider starting one. Many successful groups began with just a few people looking to connect. Local Parkinson’s organisations, healthcare professionals and community organisations can help you build and promote a sustainable group.

TIP: Websites like Facebook, Threads and Reddit have dedicated Parkinson’s groups or communities.

Sources

Parkinson’s Foundation https://www.parkinson.org/blog/awareness/support-group 

Carer Gateway. (2025). Peer support groups for carers. https://www.carergateway.gov.au/help-and-support/caring-me/talk-and-connect/peer-support-groups

Michael J. Fox Foundation. (n.d.). Parkinson’s Buddy Network. https://parkinsonsbuddynetwork.michaeljfox.org

Michael J. Fox Foundation. (n.d.). Support groups. https://www.michaeljfox.org/news/support-groups

Parkinson’s Foundation. (n.d.). Resources and support. https://www.parkinson.org/resources-support

Parkinson’s NSW. (n.d.). Support groups. https://www.parkinsonsnsw.org.au/support-groups/

The Hospital Research Foundation Group Parkinson’s. (n.d.). Support groups. https://fightingparkinsons.org.au/services/sant/support-groups/

Carer Gateway Phone: 1800 422 737 Website: https://www.carergateway.gov.au

 

Networks (not an exhaustive list, but a place to start)

YOP SA Private Facebook Group https://www.facebook.com/share/g/1CUTH5eYaF/

Living & Working with Parkinson’s in Australia and New Zealand | Facebook

Young @ Park – ACT https://www.facebook.com/share/g/1BUD2hA5LX/

MJFF Buddy Network https://parkinsonsbuddynetwork.michaeljfox.org/

AUST & NZ PARKINSON’S SUPPORT & CHAT https://www.facebook.com/share/g/1DvNdro4kR/

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