The Bega Valley Parkinson’s Group’s monthly get together on Monday brought together sufferers of the degenerative disorder with experts in the many areas of treatment.
Sufferers came from as far as the Snowy Mountains for the education seminar inside the Bega Valley Commemorative Civic Centre to see presentations by neurologist Dr Paul Clouston, educator and counsellor Kirsten Robertson-Gillam, and exercise physiologist Clarra McKinnell.
President of the group Bob McDonald, who started the support group nine years ago, said the region is in desperate need of a specialist nurse.
“They would love a nurse down here, but we don’t have the money,” Parkinson’s NSW events executive Christine McGee said.
“We need state government help, and we need ongoing funding, which is the problem.”
Ms McGee said the cost of a nurse in the Bega Valley would be $150,000 a year to cover training and travel across the region, and the specialist should be on at least a three year contract in order to be effective.
“Days like this allow us to learn from the community, we get good feedback and learn how we can help,” she said.
Dr Clouston was diagnosed with Parkinson’s 13 years ago, and shared his own experience, an overview of the disease, and news on the latest research into drug treatment.
“Probably the most topical thing is Phase 2 trialing for Exenatide at the moment, which is available for diabetes on the Pharmaceutical Benefits Scheme,” he said.
He said his understanding of the brain as a neurosurgeon has allowed him to understand the disorder, which targets the central nervous system, and urged sufferers to learn as much as they can about their condition.
“It is a big advantage if you know, because it can help you manage the illness,” he said.
“Luckily for me I understand both the commercial and patient sides.”
He said the disease directly affects 70,000 Australians, and many more indirectly.
Ms McKinnell runs Body Dynamics South Coast based in Merimbula, and offers a holistic approach to treatment targeting cognitive and motor control through exercise.
“I look at the entire person, not just Parkinson’s,” she said.
“Not many people know exercise can be a treatment for chronic diseases, or what an exercise physiologist is.
“It’s pretty cool to show people there is the other support out there and exercise can be a treatment.”
Ms McKinnell is hoping to start a men’s and women’s group at the Bega Country Club, which will offer support in the areas of mental health and awareness.
Ms Robertson-Gillam focused on the psychological impact on sufferers and carers.
“Breathing is important, so are mindfulness based techniques, imagery and visualisation,” she said.
“It is about capturing their thoughts to create positivity.
“It allows people to move forward with their life, and regain control of their lives.”
- If you need more information contact Parkinson’s NSW on 1800 644 189 or visit www.parkinsonsnsw.org.au