The Essendon Parkinson’s Support Group brings together people living with Parkinson’s and their carers, with connection, practical support and friendship at its core. Lesley, the group’s Secretary, helps lead the group alongside the President and Treasurer, with responsibilities shared across the committee. Her role is largely focused on practical organising, fundraising, helping to keep the group active, welcoming and being responsive to member's needs.
What began 30 years ago as a simple coffee catch-up has grown into a welcoming community. The group meets at Aberfeldie Baptist Church and offers monthly support meetings, guest presentations and a weekly painting and activity group. Shared afternoon tea remains a special part of each gathering, giving members time to connect with others who understand their experiences.
Reflecting on the period after the pandemic, Lesley said the group became increasingly aware of how much both carers and people living with Parkinson’s needed support. “Coming out of COVID, we realised that people were very bruised, very lost. I think we all were. It was a terrible time. And at that stage, the group changed a bit”. The group encourages carers to look after their own wellbeing.
Lesley is clear about the group’s role: “We make it very clear that we’re not health professionals, that we’re there for support and to provide members with relevant, reputable sources of information and help in navigating systems. A lot of what we do is providing information. We’ve put together quite a comprehensive welcome pack,” Lesley said. The pack includes practical information on the NDIS, My Aged Care, VicRoads, parking permits and concessions, helping new members feel more confident as they navigate complex systems. The group also regularly shares helpful resources, including Fight Parkinson’s, Michael J. Fox’s Shakers and Movers, online groups and the group’s own resource library.
Meetings often feature practical talks which may be delivered by members drawing on their own professional backgrounds or by invited guest speakers on topics like falls, calling an ambulance, downsizing and other everyday challenges. The group has even funded CPR training, reflecting its proactive approach to support.
Alongside practical support, the group also makes room for fun with trivia, word games, picnics and plenty of laughter helping create a warm and welcoming atmosphere.
The group supports people from across Melbourne’s west and north-west and embraces cultural diversity among its members. New members are often referred through Fight Parkinsons, Carers Victoria, local council, and the group is well known locally — recently, one new member being referred by a local hairdresser.
The Committee has developed valuable networks. It connects with leaders from other local Parkinson’s groups, creating opportunities to share ideas, resources and mutual support. Members access support, advice and information from Carers Victoria and Carers Victoria are scheduled to present a workshop on supports and services for carers, which Lesley said will be valuable because many carers are unaware of the help available to them. Moonee Valley City Council has also been a valued supporter with its Carer Navigation Officer, Van, visiting the group annually, assisting members with individual support and has often contributing funding towards the groups end-of-year function.
The group’s support of its members continues beyond regular meetings with members keeping in touch and sharing the journey. Carers remain welcome even if the person they care for moves into aged care or passes away, and carers who have lost loved ones are still invited to the end of year function.
Lesley said one of the greatest challenges for carers is the progressive nature of Parkinson’s. “The challenge is it’s a progressive disease. People with Parkinson’s often are very sharp. Their tremors mean that it’s difficult for them to use a phone, things like that. So the carers find that gradually you seem to be doing it all. I particularly find organising a challenge. People don’t just have Parkinson’s, they have other medical conditions as well.” As Lesley observed, caring can be isolating even when you are constantly in touch with others: “I think caring can be very lonely. Even though you’re in contact with a lot of people.”
Asked what she values most about the group, Lesley’s answer was simple: “The social interaction, the support and developing friendships.”
Lesley recommends facilitators read the which she describes as an invaluable resource with practical advice and useful information. Her advice to other facilitators “I think you just have to be flexible. Just do as much as you’re able. You can’t let things overwhelm you. You have to realise at some stage you can only do what you can do.” It is a fitting reflection of the compassion, realism and resilience that continue to guide the Essendon Parkinson’s Support Group.
