Three women with Parkinson's disease have called on the federal government to do more to help sufferers like them cope with the trauma of contracting the disease early in life.
The women met with federal parliamentary secretary for health Mark Butler on Wednesday to put their case that Australia was lagging behind the United Kingdom and the United States.
Paula Argy, 39, has been living with the disease for 16 years.
She called on Mr Butler to help set up a national resource centre to help support the specific needs of the young Parkinson's community.
The first sign she had the disease was a hand tremor on her wedding day.
"My bouquet of shaky tulips was the first indication that all was not right," she said before presenting Mr Butler with a new report, Living with Young Onset Parkinson's Disease.
"Over the next few years new symptoms manifested, such as a overwhelming feeling of fatigue.
"I would lose my balance appearing as if I'd had one too many chardonnays and my muscles would become rigid and seize up."
Ms Argy wanted to have children but says there was not enough information about whether the disease could be passed on.
She also wanted to know if she could give birth naturally and breastfeed.
"So many questions but the doctors didn't have the answers."
Ms Argy eventually decided to go off her medication to have her first child at 30. She's since had another daughter.
But going nine months without drugs meant the worst symptoms came back.
"I was rendered significantly disabled," she said.
"Sometimes fearing I would fall it was easier to crawl rather than walk."
Parkinson's is a degenerative neurological disease with no known cause, prevention or cure.
Sufferers have to cope with tremors and rigidity. Ms Argy says there's a stigma attached to the movement problems.
"When I'm having a wobbly moment - as my kids would say - the community perception is either I'm drunk or I'm on drugs."
Report author Chris Fyffe says the federal government needs to do more to help young sufferers.
"About 20 per cent of the population of people with Parkinson's are diagnosed when they're working age," she told AAP.
"But most people think Parkinson's is about the older age group - retired people with grown up kids."
The report calls for the establishment of a "national young onset resource centre" like those already established in the United Kingdom and United States.
It would deliver "peer support, service development and research about supporting people's lifestyles".
Young people currently attend support groups dominated by much older Australians.
Wednesday's gathering at Parliament House in Canberra was told this disturbed younger suffers because they were forced to face their potential future.
The problems being discussed were also different to their own issues involving work, relationships and kids.
Nerissa Mapes, in her early 30s, said women suffering breast cancer received greater support than young Parkinson's sufferers like herself.
"They have their hand held the entire way," she said.
"I was told I had Parkinson's and sent out to the street."
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