Sandi Gerschwitz would wake in the middle of the night to a "burning smell", fearing the house was on fire.
She would often check outside, looking for police officers and paramedics, then walk around the house in search of smoke or flames. But she found nothing.
The then-hairdresser started having problems with her hands while cutting hair and when hanging out the washing.
"My hands weren't working right," she said.
She also began to suffer an occasional limp.
But it took about four years of doctors' visits in South Australia, the Northern Territory and Queensland – where she's lived at various times – before Ms Gerschwitz had an answer to her symptoms.
The 48-year-old, who has since given up hairdressing, had Parkinson's disease – a degenerative neurological condition.
Anyone diagnosed under the age of 50 is deemed to have young-onset Parkinson's.
Reaching a diagnosis
Far from feeling shock and devastation at having a progressive illness, she said the diagnosis in 2019 came more as relief that somebody finally believed her.
The mother of three, who lives on the Sunshine Coast, became a regular at the gym after a doctor told her walking would help her condition.
Ms Gerschwitz started tackling long walks, including a 30-kilometre trek from Mudjimba to Noosa on the Sunshine Coast last year.
She trains at Mt Ngungun, part of the Glass House Mountains National Park.
Sunshine Coast movement specialist Dr Tony Tampiyappa, who treats Ms Gerschwitz, said exercise was useful with any neurodegenerative disease.
"In Parkinson's disease, in particular, it's a case of use it or lose it," he said.
"Most people become quite apathetic. The disease itself makes them just want to become sedentary.
"Forcing yourself to get moving is the single most important thing you can do to try to attenuate the course of this disease. It's critical."
Keen to have a goal to focus on, she has been preparing for a 12-day, 125km hike from Lukla to Everest Base Camp in Nepal and back to raise money for the Shake It Up Foundation, a Parkinson's charity associated with the US-based Michael J. Fox Foundation.
She also hopes to change people's perceptions of Parkinson's, citing occasions in which people she met thought she was drunk or taking recreational drugs.
The confusion is due to the symptoms from Ms Gerschwitz's condition, characterised by degeneration of dopamine-producing nerve cells in a part of the brain called the substantia nigra.
Understanding the condition
A decrease in dopamine levels results in impaired mobility — including tremors, stiffness of the arms and legs, slow movement, poor balance, and changes to coordination.
Other symptoms can include an impaired sense of smell, disturbed sleep, anxiety, fatigue, gut problems and speech changes.
Geneticist Miguel Renteria, of QIMR Berghofer Medical Research Institute, is researching the genetics of Parkinson's disease with funding from the Shake It Up and the Michael J. Fox foundations.
He said patients with the condition, which affects between 100,000 and 150,000 Australians, had been found to have abnormal numbers of Lewy bodies — sticky lumps composed of a protein called alpha synuclein — which disrupt normal brain functions.
The course of the illness differs significantly between individuals.
"It's hard to find two patients that have the same journey," Dr Renteria said.
"Some people start with a tremor, some people start with stiffness, some people start with slow movement.
"Some people start having problems speaking, some people have what's called micrographia – when their handwriting starts to get smaller."
While Ms Gerschwitz remembers being troubled by a phantom burning smell, Dr Renteria said Parkinson's patients more often reported losing their sense of smell altogether before their diagnosis.
He said diagnosing Parkinson's disease was challenging in the absence of a family history, given symptoms were so variable.
Dr Renteria said dozens of Parkinson's disease genes had already been identified, but he hopes the QIMR genetics study will uncover more.
By identifying different molecular triggers for the condition, researchers hope to assist doctors in tailoring existing treatments to diverse groups of patients, as well as identify potential new drugs.
Travelling with medical support
Ms Gerschwitz's former physiotherapist Phil Saridakis, who is based in South Australia, where Ms Gerschwitz used to live, will accompany her on the trip in the Himalayas.
"She's tenacious," he said.
"She's been training very, very hard for it.
"I've walked with her a few times and she's very impressive, although none of us have experienced either the thin air or sub-zero temperatures that we may encounter, and obviously the terrain.
"The reality of this is no-one knows how they're going to react until they're actually there doing it.
"But she has definitely put in the hard yards."
Mr Saridakis uses hydrotherapy to treat his Parkinson's disease patients, teaching them a different way of walking.
"I have no doubt she'll be able to continually put one foot ahead of the other and just keep moving," he said.
"Her mental strength and determination to achieve this … is admirable.
"She's been wanting to do this for everybody in the world suffering from her condition."
Mr Saridakis said neither of them knew if they would be affected by altitude sickness during the hike from Lukla, which is about 3000 metres above sea level, to Everest Base Camp, elevation about 5400m.
"That's pretty much going to be the main enemy," he said.
"It's very random about who gets it.
"If you're going to get it, you're going to get it."
Mr Saridakis and Ms Gerschwitz, who takes medication to help ease her Parkinson's disease symptoms, will fly out of Australia for Nepal today.
The trek has inspired Ms Gerschwitz's physician.
"It's probably the bravest thing I've seen one of my patients attempt," Dr Tampiyappa said.
"She's ... quite far away from medical attention, should she require it. There are quite a lot of risks with that. She's very brave and obviously, this is one of her bucket list things to do.
"This is as challenging as you can really do, or get, for someone in her condition.
"It really does show people what can be achieved with the determination and willpower that she's exhibited in her life to not let the disease defeat her."
The trek is due to start next week.
