Retired Charles Sturt University lecturer Dr Jon O'Neill raises awareness of Parkinson's disease

He'd had a quivering in his calves and a tremor that baffled specialists for years.

But for the academic losing the ability to articulate his thoughts was the cruellest blow.

"I found I was not finishing sentences and I was leaving key words out of lectures so I wasn't passing to my students all of the information they needed," he says.

"I finally decided I had to do something about it.

"I hate losing words; I'm a uni lecturer and I can't lecture!"

The now retired Charles Sturt University lecturer, Dr O'Neill, was diagnosed with Parkinson's disease during 2016.

Within a year his diagnosis was changed to frontotemporal dementia, a condition that still comes under the Parkinson's umbrella, before it again changed to idiopathic Parkinson's disease.

Dr O'Neill says Parkinson's disease remains a difficult condition to diagnose, still predominantly based on research dating back to the early 1800s.

In 1817 British surgeon and chemist James Parkinson published An Essay on the Shaking Palsy, in which he was the first to describe "paralysis agitans", a condition that would later be renamed Parkinson's disease by Jean-Martin Charcot.

Dr Parkinson's research highlighted the four main motor symptoms of Parkinson's: tremor, rigidity, bradykinesia (slow movement) and postural instability (balance problems).

Dr O'Neill says these motor symptoms can show up decades after the non-motor symptoms become obvious.

He says diagnoses are often made on the basis of physical movement.

"There is no medical test for Parkinson's disease; there is no blood test or scan to identify the presence of Parkinson's," Dr O'Neill says.

"Only in the past 20 years, we've recognised that instead of being a single disease, Parkinson's is really an umbrella for many things; it's a syndrome.

"You can have 50 people in a room, all with Parkinson's disease and none will have the same symptoms at the same stage."

When Dr O'Neill was first diagnosed with Parkinson's seven years ago, he was warned to avoid group meetings.

He was told they were too negative and the broad range of people's symptoms and stages rendered them mostly unhelpful.

But when Dr O'Neill was referred to a Melbourne specialist, he was given a different perspective.

"I saw a movement disorder specialist at St Vincent's Hospital Melbourne and there was a real focus on mental health," he says.

"They encouraged group activities even though the advice from my neurologist was different.

"I'm now in an exercise group, a walking group and a support group."

Having made the tree change to the Border from Sydney in 1999 with his wife Joan, Dr O'Neill says it's widely believed that five times the number of people diagnosed with Parkinson's are unknowingly living with it.

"Every person diagnosed with Parkinson's will probably have had Parkinson's for many years before, even decades," Dr O'Neill says.

"I had tremors in my 40s living in Sydney but I was told I was too young to have Parkinson's; I also had continuous quivering in my calves.

"Other common symptoms are sleeplessness, diarrhoea, constipation, loss of smell and racing thoughts."

Dr O'Neill says there is a lack of resources to distribute Parkinson's disease information.

"What we need more than anything else in Victoria is an increase in the number of Parkinson's nurses; at the moment they're concentrated in Melbourne," he says.

"In NSW, Parkinson's NSW has doubled the Parkinson's nurses spread throughout the state.

"There are more people diagnosed in Australia with Parkinson's disease than the five main strains of cancer."

Dr O'Neill says there was a major breakthrough in Parkinson's disease research earlier this year when scientists discovered a new tool that can reveal a key pathology of the disease: abnormal alpha-synuclein - known as the "Parkinson's protein" - in brain and body cells.

The research was published in the scientific journal The Lancet Neurology in April, promising a future where every person living with Parkinson's can expect improved care and treatments - and newly-diagnosed people may never advance to full-blown symptoms.

"I'm very excited," Dr O'Neill says.

"It's too late for me but it's a huge step forward.

"They've presented us with what may well be the biggest breakthrough in Parkinson's disease ever."

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