Canberra's Del Boundy to take part in Global Parkinson's Genetics Program

Then in her late 40s, and already diagnosed with cauda equina syndrome - a neurological condition that occurs when the nerve roots at the end of the spinal cord are compressed - the Canberran found that her tremors started to become quite pronounced.

"My granddaughter said to me, 'Grandma, Grandma stop shaking' because we'd be in my queen-sized bed - she'd be on one side, and I'd be on the other - and I'd just wake her up with my shaking," Boundy says.

"At the time, I hadn't been diagnosed with Parkinson's - a lot of people that I've spoken to were either misdiagnosed or undiagnosed for a while."

Unfortunately, Boundy was no stranger to the effects of Parkinson's in the lead up to her diagnosis almost two decades ago.

Both her father and grandfather had Parkinson's, while other family members have related illnesses.

It's because of this, that she decided to take part in ground-breaking research to help identify the genetic factors influencing the risk of developing Parkinson's disease.

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"The family is a little concerned about the number of those who have experienced symptoms of Parkinson's or related illness," she says.

"I've just been trying to live with Parkinson's and the study was good for me because it gave me an opportunity to find out more about what was going on on the research end."

The study, known as the Australian Parkinson's Genetics Study, is undertaken by the QIMR Berghofer Medical Research Institute, with funding from the Shake It Up Australia Foundation and The Michael J. Fox Foundation, and will contribute to the largest study of Parkinson's genetics ever undertaken, the Global Parkinson's Genetics Program.

Parkinson's disease is the second most common neurological condition in Australia but remains one of the least understood in terms of its cause. More than 100,000 Australians are living with Parkinson's disease which has a total financial cost to the economy of more than $775.4 million every year.

The study aims to crack the genetic code of Parkinson's by helping to identify the hundreds of genetic variants that influence a person's risk of developing the condition and its various symptoms.

"With so much to discover about the disease and its progression, this opens us up to so many possibilities," Shake It Up Australia Foundation chief executive Clyde Campbell says.

"We are truly on the edge of a potential medical breakthrough in our lifetime, which could change the face of the disease. To make that possible though, we need those living with Parkinson's to sign up so we can understand its complexities. Let's crack this genetic code so we can make a difference to what living with Parkinson's looks like in the future."

Eligible people are now able to participate in the study. To sign up for the Australian Parkinson's Genetic Study, or to find out more information, go to qimrberghofer.edu.au/apgs.

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