Key points:

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.

a woman smiles at the camera on a rocky path holding hiking sticks
Sandi Gerschwitz isn’t sure how she’ll cope with higher altitudes.()

“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.

A man with short dark hair in a blue button-up shirt stands in a university foyer
Geneticist Dr Miguel Renteria, of QIMR Berghofer Medical Research Institute, says all Parkinson’s patients’ experiences are different.()

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.”

a woman stands looking out at the view from a mountainside
Sandi Gerschwitz boards her flight to Nepal today.()

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.”

a woman and a man pose together in a green space
Sandi Gerschwitz and physiotherapist Phil Saridaski are tackling Everest together.()

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.

Janelle Miles
ABC News

 

 

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