The area served by the Northern Rivers Parkinson’s Support Group extends from Ocean Shores to Wollongbar. The Group meets in the township of Alstonville.

The Group Leader for the past five years, Cheryl Beerens, is in the process of handing over the reins to a new Leader. Cheryl cared for her father who lived with Parkinson’s and dementia.

The Group is comprised of 65% people living with Parkinson’s and 35% carers – many are couples. Attendance at meetings averages 30 people.

“When I accepted the role, I learned a lot on the job and gained satisfaction from being able to help people, get them information they need, and connect them with services,” said Cheryl.

The Group meets at a local café. Cheryl arrives early to decorate the tables with flowers or interesting seed pods.

“I do this set-up first, so the decorations give people something to talk about when they start to filter in at the beginning of the meeting,” said Cheryl.

“I don’t directly address the group for the first 20 to 25 mins after our starting time but greet people individually as they arrive and help them settle at their tables. During this time, they all chat and catch up while having a cuppa. By the time I start my group welcome everyone is relaxed and have already got to know those sitting near them.”

“We then start the meeting with an Acknowledgement of Country and introductions of any guests. We are lucky enough to have two local Parkinson’s nurses – Rebecca and Tim – who attend when they can.

“We then introduce our guest speaker, followed by Q&A time with the speaker and our nurses if they are present.”

Guests do not always present on Parkinson’s-related topics. Thought is also given to what is important to the people that support them – be they spouse, carer, family, or friends.

Also at least once or twice a year the Group divides into people living with Parkinson’s and carers for separate discussions. There are really useful conversations on these days. Usually, we have a Parkinson’s nurse sit in with the people living with Parkinson’s,” said Cheryl.

“On the occasions when we split the group, whoever is leading each gathering will ask everyone to say their name, where they went to school and what they used to do for work. I’ve found this is a great way to recognise that we all have history, and we are all more than ‘just a carer’ or someone living with Parkinson’s.

Our Group has included teachers, engineers, farmers, nurses, social workers, physios, fashion designers, sheriffs, builders, lawyers, artists, receptionists, academics, accountants, writers, ex-servicemen, deep sea divers, scientists, bus drivers and many, many more remarkable people.”

Another important part of the Group’s culture is acknowledging participants who may have passed away.

“We feel it is important to recognise everyone as part of our community, and to reassure participants that those who have passed will not be forgotten. We light a candle in their memory and acknowledge their passing by writing their name up on our board.”

Cheryl’s search for a new leader for the Group took more than a year, and several candidates were considered in the process. She considered the views of Group participants on who they would be comfortable with as their Leader.
“The main thing is to have someone who unites the Group and continues our approach of letting everyone participate. It’s not a role for telling people what to do but instead focusing on bringing people together and encouraging them to share,” she said.