Parkinson’s hasn’t kept David Veness down.
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Ten years ago, he was diagnosed with the degenerative disease of the nervous system.
This Tuesday, the president of Parkinson’s NSW was in Armidale, addressing the local support group.
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“Support groups are our backbone,” Mr Veness said.
He knows full well the importance of support groups. He joined his local support group, in Bathurst, almost as soon as he was diagnosed.
“The word ‘support’ is real; these people support each other. They’re a bit like a family.”
Two-thirds of the state’s 75 support groups are in rural and regional areas – and, as president, Mr Veness is fighting for the needs of Parkinson’s sufferers outside the big cities.
“The bush sometimes gets forgotten,” he said, “so I’m making sure it doesn’t, by being vocal.”
Nurses for local health districts
Nurses are particularly high on his agenda. There’s a shortage in rural and regional areas, where people have less access to services.
Parkinson’s sufferers can wait for months to see a neurologist, and nurses can help fill that gap.
Nurses in local health districts, Mr Veness argues, only cost $150 to $160,000, but can save the health system close to half a million dollars a year in medical appointments and hospital admissions.
The Central West recently got a full-time Parkinson’s disease support nurse, based in Orange.
Mr Veness hopes to see another five based in places like Tweed and Wagga Wagga by the end of the year.
“I’d like to see one up here,” he said, “but Tamworth will come first, and then we will move on here.”
The Tamworth Parkinson’s disease support group has been campaigning for a nurse for more than eight years. While they haven’t yet got one, Hunter New England Health recently announced two outreach clinics a year.
With financial support from the state government, Parkinson’s NSW has engaged Charles Sturt University to conduct a study of nurses in local health districts.
With the backing of politicians like Nationals senator John “Wacka” Williams and former deputy premier John Watkins, both Parkinson’s sufferers, Mr Veness will present it to NSW Health Minister the Hon. Brad Hazard and Federal Health Minister the Hon. Greg Hunt.
“When the CSU report comes out,” Mr Veness said, “I’ll have it ready to go and belt the health ministers."
He may even present the report at the World Parkinson Congress in Kyoto, Japan, next year.
NDIS service providers
Mr Veness also believes local support groups should become National Disability Insurance Scheme (NDIS) service providers, relying less on donations and government funding.
"There's a lot of providers out there,” Mr Veness said, “but for people with Parkinson's, we're in a better position to give them what they need than someone else.
“NDIS is not us taking money off our members; it's us giving them a better service – and we're taking money off the government, which they were getting in some other form in the past, anyway."
Educating the public
Mr Veness also believes in educating the community – health practitioners and members of the general public alike – about the disease.
To that end, a Parkinson’s education seminar will be held at the Armidale Services Club on Friday, November 2, from 9.30am to 2pm.
Topics include treatment and research updates; wellbeing for carers; exercise benefits; voice and swallowing; and medications.
Enquiries to Parkinson’s NSW InfoLine 1800 644 189.
Living with Parkinson’s
Finally, Mr Veness encourages Parkinson’s sufferers to exercise, and live an active life.
The disease certainly hasn’t stopped him from being involved in the community, or having a private life.
“I can’t say it hasn’t impaired my quality of life,” he said, “but I’m still chopping firewood and mowing the lawn, so I can’t be going too bad!”
He and his wife are involved in nine community organizations in Bathurst; they went overseas last year; he’s planning to go to the world congress in Japan next year; and he goes to the pub with his mates every Friday night.
"They've told me I'm not allowed to shout any more,” he said. “Every time you come back from the bar, we've only got half a glass of beer!"