Shoalhaven's Nikki Hunter vows to stay positive despite FND diagnosis

She was rushed to hospital where she was placed on stroke watch for five days. 

“When I was lying there I wasn't sure whether I was ever going to be able to speak again,” she said. 

After extensive testing, doctors diagnosed Nikki with Functional Neurological Disorder (FND), a debilitating condition that triggers violent seizures.

Unfortunately, the condition is very under-researched and misunderstood in the medical field, but doctors do know patients experience neurological symptoms such as weakness, movement disorders, sensory symptoms and blackouts. In Nikki's case she experiences the inability to walk or talk, full body tremors and vocal and facial ticks. 

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After each seizure Nikki has to relearn how to walk and talk, which can often take a few days. 

"The longest I’ve gone without being able to talk is five weeks, but it depends on how big the seizure is,” Nikki said. 

“I've lost count of how many times I had to relearn to walk and talk, but it doesn't matter how many times I have to get back up, it just matters that I do.”

The difficult thing about FND, is that doctors don’t know why Nikki was struck with the condition, or how long it will take her to recover. 

“The doctors think I should get better, but they can't tell me when and to what extent my symptoms will be,” she said. 

"There's no treatment or medication so I'm very much just riding it out." 

The incredible thing about Nikki’s journey, is that despite the uncertainty of her condition, she's still got a positive outlook on life. 

Before falling ill, she was an ecologist with Shoalhaven City Council, and very passionate about wildlife rescue. As well as voluteering with rescue groups, she was also a professional pole dancer and instructor. 

"I've embraced what’s happening,” she said. “But that does not mean I've stopped fighting.” 

When she was rushed to hospital for the first time, Nikki said she made the decision not to dwell on the negatives of the situation. 

"I thought to myself, there's nothing I can do about this, and there’s no point in stressing," she said. 

"I had the choice to sit there and be sad, or focus on what I could still do, not what I couldn't.” 

Nikki's husband of eight years, Steve has been a huge support over the past few months, as Nikki relies on him to help her with a lot everyday activities. 

“We are in this together and it’s affecting him just as much as it’s affecting me,” she said. 

“He has to help get me in and out of the shower, when I'm having a seizure he drops everything and holds my hand. He's amazing.”

Nikki's is now wheelchair bound most of the time, and as her FND came on so quickly, her home is no longer accessible. 

“We live on a rural property in a two story house so I can’t get in and out of the car on my own or go up and down the stairs,” she said. 

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An old friend of Nikki's, Janine Lousie has organised a fundraising event and Go Fund Me page, to assist Nikki and Steve in making their home more accessible. 

The fundraiser, ‘A Better Life for Nikki’ will be held at West Leagues Club, Leumeah on Thursday, November 15, 2018 at 7:30pm, and will include a silent auction and raffles. Tickets are available at the club or call 4628 4188. 

Nikki said she was thankful for the support shown not just by Janine, but the whole community. 

”People have been absolutely amazing and really helpful, Janine didn't have to do this but she did and I'm really grateful." she said. 

"I want to try and help other people who are going through this as well.” 

If you'd like to donate to Nikki's Go Fund Me page, visit https://www.gofundme.com/wheels-for-nikki.

All proceeds will be donated towards essential home remodelling, including bathroom alterations, driveways and pathways for Nikki, and to assist Steve with caring for his wife.