Parliamentarian John Eren has described his Parkinson’s diagnosis as a relief after anxious days fearing his symptoms signalled a far more sinister problem, one he feared could leave him a quadriplegic.
By sharing his diagnosis, the Victorian Labor member of the state parliament hopes to raise awareness of Parkinson’s disease, saying “not knowing” is “worse than actually living with something that you don’t know is going on in your own body”.
Parkinson’s is a neurological condition that gets worse over time and can cause problems with movement, speech, chewing and swallowing, plus anxiety and depression.
The head of the Parkinson’s Disease Laboratory at the Florey Institute, Professor David Finkelstein reassured people with Parkinson’s that they could still have a good quality of life with treatment.
He is part of a large team working to develop a “new generation” of drugs to slow the progression of Parkinson’s.
“We’ve spent the last 10 years on each drug. So there are more than 100 ‘people years’ we’ve spent developing these new compounds,” said Professor Finkelstein, who also heads the research committee at Parkinson’s Victoria.
Two possible disease-modifying drugs were shown to be safe in phase one testing, he added.
Two companies, one for each possible drug, are in the planning stages of designing large trials to assess their effectiveness. Once started, the trials may take two to three years to complete.
The medicines currently on the market provide symptomatic relief only, but with the help of doctors, physiotherapists and speech pathologists, people with Parkinson’s can live a “wonderful life”, Professor Finkelstein said.
It starts with a diagnosis, but due to the coronavirus pandemic many people are avoiding their doctor, he said.
Mr Eren, the Member for Lara between Melbourne and Geelong, wants that to change. A diagnosis, at least for Parkinson’s, can prevent unnecessary suffering, he said.
The politician was motivated to share his diagnosis after receiving a flurry of messages following his cardiac arrest in 2016, while he was serving as Victoria’s state minister for sport, veterans, tourism and major events.
Mr Eren initially assumed the tingling in his fingers and the occasional shaking of his right arm was the result of nerve damage caused by a bulging disc in his neck intruding into his spine and crushing some nerves.
“My colleague Christine Couzens highlighted to me, when I was standing up in Parliament holding a piece of paper, that my hand was a bit shaky,” he said.
“She asked what was wrong. I said I thought it was a nerve problem I’d had in my neck.”
Mr Eren said he worked closely with former Victorian premier Ted Baillieu whose hands would also shake, but the Liberal’s symptoms were likely the result of a neck fracture he sustained while playing rugby in the 1970s.
Eventually, Mr Eren took the advice of friends and family and saw a doctor, who referred him to a neurologist and neurosurgeon.
Mr Eren was “scared” of what the specialists might reveal to him, and he began to fear the worst.
I was thinking, I don’t want to have an operation on my neck, I could be a quadriplegic,” he said.
The neurologist, upon leading him to his office, noticed there was no swing in Mr Eren’s right arm when he walked, he was hunched over and shuffling his feet.
During the appointment on December 3, 2019 – a date Mr Eren will never forget – the neurologist diagnosed him, aged 55, with Young Onset Parkinson’s disease.
He was handed a prescription for medication that would manage his symptoms, but given there is no cure for the disease, and being someone who is “very cautious” and does not like taking Panadol, Mr Eren delayed going to the chemist to fill the script until January.
“Luckily I did (get the medication) because as soon as I started taking it, it was a bit of a relief, not only physically but mentally,” he said.
Mr Eren is an ambassador for an online fundraiser called 27forParkinson’s, which is asking people, no matter their location, to walk 27 times over 27 days, starting on October 1, to raise money and show support for people with Parkinson’s.
There is a national free call information line (1800 644 189) to assist those with the disease.