Grace Winiecki spends 40 minutes each day with a red light bucket on her head — a device she claims is making a significant difference to her life.

The 63-year-old was diagnosed with Parkinson's disease 11 years ago and began her own light treatment, also known as photobiomodulation, last April.

"I'm probably better now than what I was seven years ago," Mrs Winiecki said.

Mrs Winiecki said since using red lights, she shakes a lot less, can dress herself easier, feels happier, lighter and laughs more.

"I don't think it'll ever be a cure, but it definitely slows progress and improves some [Parkinson's] symptoms," Mrs Winiecki said.

"We're getting a lot of good feedback from people who are using the lights, so it'd be a huge coincidence if they're all getting better just because they're wearing a bucket on their head."

Photo: The Dorset community shed has been making the light buckets using rubbish bins. (ABC News: Manika Dadson)

Tasmanians with Parkinson's disease have been experimenting with red and near infrared light treatment for the past few years, after being inspired by the research work of the University of Sydney's John Mitrofanis, who used red lights on mice infected with Parkinson's.

The animal trial found the light stopped the mice's nerve cells in the brain from dying.

The 'human guinea pig' — so to speak — was former federal MP Max Burr, who lives in Scottsdale and was diagnosed with Parkinson's in 2012.

"I could literally have fried my brains I didn't know, but I was prepared to take the risk because there was no other form of treatment that could offer any kind of improvement to the condition," Mr Burr said.

"Over a period of five months [using the lights twice daily for 20 minutes] I noted that there was substantial improvements to quite a number of the Parkinson's conditions, in fact the only condition that didn't improve was muscle stiffness.

"I'd regained the sense of smell, the fine motor skills had improved substantially, I was able to play the piano again … but then it plateaued."

The human light trials begin

Three years on, Mr Burr and the other Tasmanians using their own light treatment have inspired an Australia-wide "proof-of-concept" clinical trial to test whether the lights are actually making a long-term difference to people's health or whether it's just a placebo effect.

The trial, run by The University of Sydney School of Medicine and Parkinson's SA, involves people from Brisbane, South Australia and Sydney.

Photo: Catherine Hamilton and Ron Brown are designing the helmet for the Sydney clinical trials (ABC News: Manika Dadson)

Some participants are using placebo lights, while others are using red and near-infrared lights on their heads and stomachs.

Catherine Hamilton, a retired Tasmanian specialist occupational physician who specialises in photobiomodulation and helped Mr Burr with his light treatment, is developing helmets with her electronics expert friend Ron Brown for Sydney trial participants.

"For people with Parkinson's the lights are giving them an improvement now, right now, they're not having to wait 10 years for a pill," Dr Hamilton said.

Ann Liebert from the University of Sydney, who is co-ordinating the trial, said she had worked with light therapy for 10 years and had seen many positive results.

"We have medical evidence and case study evidence, so now's the time to look at experimental evidence at a higher level," she said.

"The main hope is that we can capture and replicate what the clinical observations have been over the past few years in Tasmania in other centres around Australia, and that we can characterise and predict who would be able to benefit from the helmets, if it's a sustained improvement."

Professor Simon Lewis, a neurologist who specialises in Parkinson's and Alzheimer's disease, said people with Parkinson's experienced "progressive and relentless" brain cell death.

"The cells that are most affected produce a chemical called dopamine in the brain, and without dopamine you lose transmission for your mobility and your movement gets affected, but also things like your thinking," Professor Lewis said.

Photo: Users can change the light frequency using an app (ABC News: Manika Dadson)

He said red light treatment was thought to provide energy to those dying cells.

"The basic thinking is that you would add energy through a light source that might penetrate … to help the cell's own supply of energy [the mitochondria]," Professor Lewis said.

"This sort of treatment initially started with treating muscle aches, where of course muscles need energy, so people would put red lights over muscles that are sore.

"I certainly would not recommend anybody going out and spending money and time trialling these things at home, but I think that the truth is, in the absence of an effective treatment to slow the progression of Parkinson's disease it could be [argued] that there's no such thing as a bad idea."

Lots of other factors at play: expert

Professor Lewis added the placebo effect was very real.

"The truth of the matter is there are lots of matters at play, yes people who are using these lights at home on their own are subject to an enormous placebo effect, there's no doubt about that, which is why more well-constructed trials are [needed]," he said.

"There are other factors that can play on why patients might feel better, even in the period of the same day … the way that the [Parkinson's] tablets work, the level of chemical in the brain, especially when the disease progresses, can fluctuate.

"Ninety per cent of Parkinson's patients have poor sleep for lots of different reasons, and of course a bad nights sleep means a bad day the next day."

As well as Parkinson's disease, the trials will also look at the effect red light treatment is having on people with Alzheimer's and cardiac disease.

Researchers will test blood, red bloods cells and measure gut microbiome to see what effect the lights are having.

Trials across each state are being conducted at different times.

The Queensland placebo trial has now concluded and results are being analysed. The South Australia and Sydney trails have recently started and results are expected to be known later this year.

DIY helmets sent around Australia

The Dorset Community Shed started making its own light bucket helmets last year after hearing of people's success using the lights.

Mervyn Chilcott said the shed has made 78 buckets since last April and has more on order.

Photo: Light helmets made in Tasmania will soon be clinically trialled in Sydney. (ABC News: Manika Dadson)

"We start off with a rubbish bin, cut the top off and line it with LED lights that we bring in from China," he said.

"They've gone all over Tasmania and different parts of Australia and they are definitely making a difference in the quality of life.

"They mightn't be curing Parkinson's, but they're certainly giving quality of life to people with Parkinson's and other people with brain disorders."

Experts warn red light treatment should not be used without consulting with a health professional first.

And even though it will take time before the results are known, those using the lights said they will keep using them anyway.

"With the work that's now being done on using light therapy, I think it will open up much broader opportunities and possibilities for the medical profession that haven't yet been discovered," Mr Burr said.