Eleven years ago Ian Parr felt the first signs of his "affliction".
Subscribe now for unlimited access.
$0/
(min cost $0)
or signup to continue reading
"I like to call it that, rather than a disease," the Berry resident said yesterday.
A trembling right hand, elbow and foot were the 80-year-old's first hints of Parkinson's disease.
"Over a period of 11-odd years it's progressed. I now have trouble with balance and 'freezing' - a strange feeling when you want to go through a smallish opening or doorway and suddenly you find yourself riveted to the ground," Mr Parr explained.
"There's nothing you can do to make yourself move. You just stop - your feet try to go - then when it passes you whiz forward at 100 miles an hour in the end.
"It looks and sounds funny but in practice it's not very funny at all."
Mr Parr says his symptoms are like no-one else's - which is one of the problems with managing Parkinson's disease.
"No two people are the same, people progress in very different ways, some can look after themselves and others need full-time care.
"Medications that can work for some have terrible side effects for others. Things are always changing, as it progresses there are different challenges and that's why this program is so important."
Mr Parr said visits over the past three years from the neurological nurse have been life-changing.
"The loss of her just can't be measured. You have to have been involved with her to realise.
"It's going to be irrevocable damage if she is not reappointed to continue her work," he said.
"She conducts carers' courses which are a tremendous help emotionally. Caring for a person with Parkinson's is a full-time job. It's a huge strain on relationships and she tackles that side of things as well."
Mr Parr said he was "appalled at the governments who just blame each other".
"They will spend money on all sorts of other things that are not vital in the community. Yet Parkinson's is getting no help at all, none whatsoever."
Mr Parr called for trained neurological nurses to be appointed permanently to communities throughout Australia.