Quest to destigmatise Parkinson’s disease

Armstrong Creek’s Rose De Kook has grappled with the pain and sadness of feeling misunderstood since being diagnosed three years ago.

Rose De Kook and her dog Raffy will be taking part in the Parkinson’s walk in Geelong this weekend. Picture: Alison Wynd

Armstrong Creek’s Rose De Kook has grappled with the pain and sadness of feeling misunderstood since being diagnosed with Parkinson’s disease three years ago.

“I’ve had friends say, ‘just hang onto your hand, it will stop the shaking’,” Ms De Kook said.

Ms De Kook said she had a disabled parking permit, but strangers still stared disapprovingly when she wasn’t visibly shaking.

“If they can’t see anything wrong with you, they judge you,” she said.

Parkinson’s disease can affect people from their mid-30s.

An estimated 219,00 Australians and 57,000 Victorians live with the disease.

While medication and support from healthcare professionals can help manage symptoms, there is no way to slow progression or cure Parkinson’s.

On Sunday, in a bid to destigmatise the condition, Ms De Kook will take part in A Walk in the Park, along with her dog Raffy.

Ms De Kook said she hoped the walk would help raise awareness, and educate the wider community about the disease.

“Everyone’s got different symptoms,” she said.

“They might have the shake … it manifests in all different ways.”

Rose De Kook and her dog Raffy will be taking part in the Parkinson’s walk in Geelong this weekend. Picture: Alison Wynd

The cause of Parkinson’s is unknown, and the range of complex symptoms most commonly include stiffened muscles, slowing movement or a resting tremor.

Other symptoms can include pain, depression, anxiety, speech changes and loss of facial expression.

Fight Parkinson’s chief executive Emma Collin said the disease remained misunderstood by many, who thought of it as a shaking disease prominently diagnosed in older people.

Ms Collin said Fight Parkinson’s was determined to change the misconceptions and help lift the lid off the disease, starting with organising A Walk in the Park.

“Our community told us we need to lift the voice and profile of Parkinson’s,” Ms Collin said.

“We need to ensure that every person with Parkinson’s is seen and their collective voice is heard.”

“We want to ensure the wider community understands the deep impact of Parkinson’s that goes beyond shaking so the disease is taken more seriously by decision makers and also to reduce the stigma associated with some of the symptoms.”

Ms Collin said A Walk in the Park served as a vital fundraiser, enabling education for those affected by Parkinson’s and Atypical Parkinson’s.

“It’s a symbol of unity and inclusivity,” ” she said.

The community fundraiser also supports people affected by the atypical Parkinson’s conditions.

Geelong’s A Walk in the Park will be held on Sunday at 10.30am from Eastern Park.

Anyone can register online at https://fightparkinsons.grassrootz.com/a-walk-in-the-park-geelong-2024/tickets.

Originally published as Quest to destigmatise Parkinson’s disease