Living with or caring for someone with Parkinson’s can be challenging, but you don’t have to feel alone.
Peer support offers 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.
Parkinson’s peer support offers information, social connection, hope and support through group meetings, over the phone, online communities and educational seminars.
This section covers:
- Parkinson’s Peer Support Groups
- Joining a Parkinson’s Peer Support Group
- Attending a Peer Support Group for the first time
- Starting a new Peer Support Group
- Support for you
A Parkinson’s Peer Support Group is a gathering of people whose lives are affected by Parkinson’s, who 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 health care 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 Parkinson’s groups meet once a month, however 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 living with Parkinson’s, their carers, friends and family are all welcome.
- Download the Parkinson's Peer Support Group Flyer PDF to see if there is a group in your area.
- Contact the Parkinson’s Victoria Health Team on 1800 644 189 to connect with your local group
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 was helpful and supportive.
If you are 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 are attending a Parkinson’s Peer Support Group for the first time:
- Peer support is not a substitute for medical treatment or professional counselling, and it is not a replacement for family and friends
- Parkinson’s Peer Support Groups are open to people at all stages of the illness. 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
- In some areas Parkinson’s Peer Support Groups are also 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.
Parkinson’s Victoria is happy to work with individuals who are interested in starting a new Peer Support Group for people living with Parkinson’s.
While Parkinson’s Victoria is unable to provide financial support or an ongoing facilitator, we are able to support a group through:
- Regular updates and information from Parkinson’s Victoria
- Regular visits from a member of the Parkinson's Victoria 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
To discuss the possibility of setting up a new Peer Support Group in your area:
- Call the Peer Support Coordinator at Parkinson’s Victoria on 1800 644 189
- Email: firstname.lastname@example.org