KI artist Julie Bury enjoys life at home thanks to NDIS support

Julie Bury's hands shake too much to hold a paint brush anymore.

But the Kangaroo Island retired special needs teacher still paints and creates, whenever she can.

"I have to use my fingers now, but I try to paint when I can," Julie said.

"I use mainly acrylics and experiment with texture and colour. It's abstract and some people might think what the heck is that about, but it makes a difference, it's something I do. It's creative expression."

Julie started painting five years ago after being diagnosed with early onset Parkinson's disease seven years earlier.

She was 45, recently separated and with three children, the youngest only 10.

"I remember after the neurologist told me I had Parkinson's, I got home and my 16-year-old daughter was crying because her boyfriend had left her, and I sat there for a while in the car and thought I don't know what I'm going to do now, I was sort of stunned," she said.

"Suddenly the life you think you've got ahead of you is so changed that it's hard to get your head around, and when you're younger, too, you think, well this is not what I planned."

Julie says at first, the degenerative movement disorder seemed manageable.

"For a long time, they call it the honeymoon period, for about three years, nothing much goes wrong," she said. "You go on the drugs, you feel like well this will be fine, and then it starts escalating a bit-and then a lot."

Julie has since had two unsuccessful brain surgeries and tried every medication available to alleviate her symptoms.

In recent years, with her three children grown and living in Queensland, she found it more and more difficult to cope alone.

She relied heavily on the small Kingscote community where she lives, in particular close friend, Jeff Anderson.

"Jeff's a good friend and he basically became my carer," Julie said.

"But I had to take tablets every three hours, all through the 24-hour period, every three hours at night. If I don't take them, I may not survive and I needed help to take them. But how can you ask people to do that for you?

As her condition deteriorated, Julie felt her future was bleak.

"The choice I was looking at was going to an old people's home, that was the only choice, and the thought of that was just mind-boggling," she said.

Earlier this year, on the advice of a therapist, Julie turned to the National Disability Insurance Scheme (NDIS) for help.

"I'd reached a point it was a bit too much for Jeff and I didn't know what else to do," she said.

"I had no way of knowing how I was going to make it through. I thought the only way out was I would have to be in a nursing home, and that I couldn't have lived with.

"It's not that I want to die, but the idea of being in an old people's home-it's not the old people, it's just that they're not my peers. I thought there was no way forward."

Through her self-managed NDIS plan, Julie now has support carers stay in her home overnight to give her medication and help her if she falls.

She has a modified bathroom with grab-rails, mixer taps and space for a wheelchair. She also has some carers during the day.

"I'm happy with the NDIS, I'm over the moon," she said. "I just didn't have a way to afford a carer myself. It means I now have a way of seeing that I can survive, and I have choice about my life."

Julie appreciates the control she has over who she employs to provide the care she needs.

"Parkinson's can make you feel disempowered and I was a bit scared about self-managing," she said.

"But I would encourage other people to do it. I've got exactly what I want in carers. I think especially in small remote communities like this, if you know somebody, you can figure it out."

Remaining in her own home means Julie can continue doing the things she loves like gardening and painting, knowing someone will be nearby to help if she needs it.

"I paint pictures when I can and I've got a garden," she said. "I pick flowers and rake sometimes. I do what I can. I'm in a community. In an old people's home you're not in a community."

Some of Julie's artwork can be seen online in a Colorado Springs gallery in the United States, called The Unsteady Hand.

The gallery promotes improved quality of life for people with Parkinson's disease through communal creative engagement.

"Sometimes I do hope that I will get marginally better but it is a neurodegenerative disease, it's not going to get better, so I think you have to just seize the moment, and if the moments add up to enough, then that's enough," Julie said.

"My art is about layers of life, about texture, evolution of myself, and my world. Parkinson's disease is not me. I am so much more."

The NDIS provides Australians under the age of 65 with a permanent and significant disability the supports they need to live an ordinary life and to increase their social and economic participation.

The NDIS is now providing support to more than 30,000 locals in South Australia. There are more than 300,000 who have benefitted from the NDIS nationally, including more than 100,000 people receiving support for the first time.

The above article was supplied to The Islander by the National Disability Insurance Scheme.

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