The Pakinsons group for the Shoalhaven turned out on World Parkinsons day - Thursday, April 11 - to acknowledge the work that has been done, and draw attention to what still needs to happen.

"We need more support from the government," said Di Moller, who cared for her husband for 33 years.

"We need more Nina's (Shoalhaven Parkinsons nurse), we need to keep Nina, because the funding runs out at the end of June."

Parkinsons sufferer Jo Szczebanow said it was an annual battle to keep the only specialised nurse available in the region.

"Every year we have to prove why we do need a Parkinsons nurse," she said.

"They started the pilot program for Australia here.

"Nina has over 600 patients she looks after and they're thinking of taking her away.

"It's ridiculous."

Ms Szczebanow said her journey was a challenging one - but that she received immense support.

"I was diagnosed 13 years ago," she said.

"I was a nurse, and I was gobsmacked when I went to the doctor, I couldn't' believe it. It took me three years to get my head around the diagnosis. I was devastated.

"It's not an easy journey - I'd say (to others) hang in there and have a cry when you need to cry, and talk to somebody when you need to talk to somebody.

"It has its moments, when you've had enough of it and you would like to go away, but you meet some amazing people."

She said the most important things to maintain were fitness and a social life.

"You have to keep moving, or you just shrivel up," she said.

"Keeping connected, making sure you don't become isolated, and keeping involved. 

"Get a good team around you ... there are so many parts of your body that are affected, and you need someone to look after each bit.

"It's all about quality of life."