Living with or caring for someone with Parkinson’s can be challenging, but you don’t have to feel alone.
Peer support groups offer people the opportunity to learn more about living with Parkinson’s and to enjoy the company of others who share similar experiences, situations, and challenges.
Fight Parkinson’s Peer Support Groups
A Fight Parkinson’s Peer Support Group is a gathering of people whose lives are affected by Parkinson’s. They meet regularly in a relaxed, welcoming environment.
Activities generally undertaken by a peer support group include:
- Sharing information and solutions to common situations
- Hearing from healthcare professionals about new developments in Parkinson’s medication, treatment options and research
- Discussing experiences and feelings
- Taking part in community awareness raising activities
- Enjoying company and friendship with others in a similar situation.
Each peer support group is unique in its membership and style. Most Fight Parkinson’s groups meet once a month, some meet every couple of months, while others meet weekly. Some groups are associated with a local healthcare service, while others are run by dedicated members of the community who may or may not have Parkinson’s.
People with Parkinson’s, their carers, friends, and family are all welcome.
Watch this video featuring Mansfield Parkinson’s PSG.
Find a Fight Parkinson’s Peer Support Group
To see if there is a group in your area, contact the Fight Parkinson’s office, call 03 8809 0400 or email info@fightparkinsons.org.au.
Attending a peer support group for the first time
Often the most difficult step is walking through the door for the first time. Once this decision is made, most people find that attending a peer support group is helpful and supportive.
If you’re particularly nervous, have a chat to the group facilitator either on the phone or immediately before the meeting. They can help ensure you feel welcome. You may even like to bring a friend or family member along for moral support.
There are a couple of things to keep in mind if you’re attending a Fight Parkinson’s Peer Support Group for the first time:
- Peer support is not a substitute for medical treatment or professional counselling, and it’s not a replacement for family and friends.
- Peer support groups are open to people at all stages of their Parkinson’s journey. It can be confronting to attend a group where there may be people with different or more advanced Parkinson’s symptoms than yours. Remember that Parkinson’s is progressive and that everyone’s symptoms and experience of Parkinson’s is different, so one person’s experience is not an indication of what your experience will be.
- Some Parkinson’s peer support groups are open to individuals with conditions that are similar to Parkinson’s but have little support of their own (for example PSP, MSA and CBS).
- A Parkinson’s peer support group is a welcoming and accepting environment, where members’ individuality, privacy, and life experiences are respected.
Starting a new peer support group
Fight Parkinson’s is happy to work with individuals who are interested in starting a new peer support group for people living with Parkinson’s.
While Fight Parkinson’s is unable to provide financial support or an ongoing facilitator, we are able to support a group through:
- Regular updates and information from Fight Parkinson’s
- Regular visits from a member of the Fight Parkinson’s Health Team
- Telephone and email assistance
- A dedicated peer support coordinator whose role it is to liaise with and support you in your role as support group facilitator
- Peer support leader training.
Support for you
To discuss the possibility of setting up a new Peer Support Group in your area:
- Call the Peer Support Coordinator at Fight Parkinson’s on 1800 931 031
- Email: info@fightparkinsons.org.au
