Tasmania chosen to provide blood samples for global Parkinson’s disease research

Parkinson’s disease is often referred to as the ‘old man’s disease’, but for one mother from Northern Tasmania this couldn’t be further from the truth.

Hayley Milne was diagnosed with early onset Parkinson’s disease ten years ago, at the age of just 41.

“I was working and had three children aged seven, nine and 11,” Milne said.

Symptoms of the neurological condition started in my mid-30s and have gotten progressively worse over time.

“I have tremors in my head and hands, my legs freeze, my balance is terrible, I don’t have much memory,” she said.

The disease, which affects up to 150,000 Australians, has reshaped the future Ms Milne thought she had.

“I’ve always enjoyed working, but I stopped ten years ago,” she says.

“For quite a few years I was very isolated at home because the anxiety and depression were so terrible that I hated leaving my safe place.

“It took a lot to get over that grieving time, to deal with, you know, life changes, but there’s nothing we can do to change it [back]So we just have to keep going.”

The number of cases is growing in the state

Parkinson’s disease is the fastest growing neurological disorder in the world and Tasmania has one of the highest rates in the country.

Launceston local Peter Longman played down the symptoms of his Parkinson’s for almost a decade before he was left with no choice but to face the diagnosis three years ago.

Mr. Longman’s symptoms affect almost every aspect of his life.

Mr. Longman had always been very active.

“But nowadays you wouldn’t catch me doing that.”

Now it’s hard to get out of a chair for Mr. Longman.

Daphne Longman said it was heartbreaking to see the disease ‘steal’ her husband.

“He was a very athletic man up until three or four years ago, he did the 75km Cradle to Coast bike ride, he walked in the bush, he kayaked – he can’t do that anymore,” she said.

The disease also has a mental impact on Mr Longman.

“He tries to talk to someone but halfway through he loses the sentence,” Ms Longman said.

Tasmania chosen for global research

Despite experts predicting that the disease will double in the next 20 years, little is actually known about what causes it, who it may affect and how to treat it.

An international study hopes to expand global genetic research into Parkinson’s disease and Tasmania has been chosen to contribute.

The University of Tasmania is funded by both the Shake It Up Foundation and the Global Parkinson’s Genetic Program to collect blood samples from Tasmanians living with and without Parkinson’s disease.

UTAS researcher Samantha Bramich is among those leading the initiative in Tasmania and is encouraging all Tasmanians to get involved in the genetic research.

“We are fortunate to have been invited to contribute to this global project, which will hopefully yield a number of important breakthroughs in our understanding of Parkinson’s genetics,” said Dr. Bramich.

“We need better treatments and possibly disease-modifying treatments to prevent and cure this, but to do that we need to know more about the genetics behind Parkinson’s.”

For fellow Pinson researcher Michele Callisaya, this study hits close to home.

“I was diagnosed a little over four years ago, but I probably had symptoms for two or three years before that,” Dr. Callisaya said.

Like Ms Milne, Dr Callisaya was diagnosed in her 40s.

“The diagnosis really made me want to do more research to improve care,” said Dr. Callisaya.

Dr. Callisaya has already rolled up her sleeve for the global investigation and hopes others will do the same.

“Traditionally we don’t get things like the clinical trials and the big studies coming to Tasmania, so it’s a fantastic opportunity,” she said.

‘Want to do everything’

Mrs Longman hopes the investigation will give her and her husband more answers.

“It was frustrating to see Peter, who was not an old man to me and who was so fit and active, become weakened by this disease and my nursing mind wanted to find out the causes.

“All these questions are bothering me and none have been answered.”

She knows her husband may not receive any of the benefits, but hopes this will help people diagnosed in the future.

“We are willing to participate in whatever helps,” she said.