Disease struggle inspires crucial medical change

'It took me a number of years to get a handle on my disease and those years were awful': Community hero recognised for her work in Parkinson’s support.

Nikki A Creber has won the Australia Pacific LNG Community Hero Award.

AFTER dedicating her life to helping those with Parkinson's disease Nikki A Creber has been awarded the prestigious Australia Pacific LNG Community Hero Award.

The Marcus Beach resident, who has Parkinson's herself, coordinates the Tewantin Noosa Parkinson's support group in areas covering Cooroy to Cooloola.

She also established a WrapAround Team which provides beneficial physical activities and was involved in implementing the first dedicated Parkinson's nurse on the Sunshine Coast.

Ms Creber said receiving the award had prompted her to revisit her "big desires".

"It's exciting, really quite odd and different. It's made me do a bit of reflection because some people have said, 'Wow you really deserve that award, you've worked so hard the last couple of years and now you can relax', but I don't interpret it like that," she said.

"Having the award now means I have more work to do, I need to use it for its advantage."

Ms Creber led a campaign to introduce a dedicated Parkinson's support nurse for the Sunshine Coast in 2017 and said she hoped the award and the $2500 prize money would lead to more qualified nurses.

"It (the nurse) was very exciting, but it hardly touches the ground in terms of need," she said.

"I'd like to get two more nurses for the Sunshine Coast at least, because we have 1728 people here who have Parkinson's, plus another 200 more who don't take medication, that's a big number.

"And people say, 'Well, of course you're going to have big numbers, it's a retirement mecca' but the numbers aren't in older people, there are more and more younger people being diagnosed."

After struggling through her own diagnosis Ms Creber was motivated to help others and began co-ordinating the Tewantin Noosa Parkinson's Support Group which includes a Wraparound Team that provides beneficial activities such as boxing, exercise, singing, speech therapy and dance.

"I've lived with Parkinson's for 15 years and I was a young diagnosis and I had to leave a full-time career because I was told I was going to lose my mobility within a year," she said.

"The shock value of that and then being without the structure of your career around you is a shock.

"It took me a number of years to get a handle on my disease and those years were awful … my life turned upside down and I don't want that to happen to anyone.

"I brought myself back through a bad place through a variety of practices I've learnt, so that ignited my passion to help people because when people are diagnosed flashing before their eyes are all their dreams."

Ms Creber said the group of allied health practitioners, medicos and complimentary health practitioners that work in the WrapAaround team help ensure the members get the right amount of exercise that they need.

"Move it, use it, improve it and if you don't move it, you will lose it and keeping your motor system working as well as it can is absolutely integral in maintaining a quality of life," she said.

"It's crucial … to have that level of exercise in our week so we built a team around our group."

Ms Creber said there was no time to waste, more support was needed.

"There is a tsunami coming and we're not prepared for it," she said.

"Worldwide the people with Parkinson's is going to triple in the next few decades and that means that it's going to be a tremendous cost on our hospital system and on our health department and we are just not prepared for that.

"Parkinson's doesn't kill you, it's a progressive debilitating disease so you're more prone to pick up a secondary thing that will cause more damage, but if people are able to live longer in their own home it's less likely to happen.

"We live a normal life span, living is just a lot tougher …and nurses on the ground can make a big difference in the quality of life for us."

Ms Creber won the award from a strong field of community contributors at the 2019 Community Achievement Awards which was presented by Orgin general manager Alex Kennedy-Clark.