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Sandi woke to the smell of electrical burning as lifelong neurological condition secretly took hold

By Maddison Leach|

Sandi Gerschwitz kept waking up to a burning electrical smell in the middle of the night but even as her symptoms stacked up, she never guessed what was going on in her body.

"I would write and it would hurt my brain. Even pegging clothes became difficult for me. The burning smell came after that," she tells 9Honey.

"I didn't really speak about it for a while. I just thought that my sense of smell was changing."

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Sandi Gerswitch kept smelling electrical burning but didn't know why.
Sandi Gerschwitz kept smelling electrical burning but didn't know why. (Supplied)

The mum-of-three had been a hairdresser for 30 years and assumed decades of working with chemicals were to blame, but even after selling her salon the symptoms persisted.

The burning electrical smell started showing up in the middle of the day and Gerschwitz worried she was "going crazy".

"I would get up and look around the house, checking every room, then go outside thinking someone else's house was burning," she recalls.

"I had noticed so many changes in my body and life that weren't making sense and taking away my quality of life. I would say that's when I pushed the issue with doctors."

Her GP on the Sunshine Coast referred Gerschwitz to a neurological specialist in 2018, but she relocated to Alice Springs in the Northern Territory and couldn't make the appointment.

Doctors in the NT dismissed her symptoms and suggested she just lose weight, not realising a life-long neurological condition was taking hold of Gerschwitz .

Sandi Gerswitch with family and friends.
Sandi Gerschwitz with family and friends. (Supplied)

It wasn't until she moved to Adelaide in 2019 that doctors finally believed her and she underwent four MRIs, among other tests, but they all came back clear.

"My GP said กญ nothing was wrong with me. We knew there was," Gerschwitz says.

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She was referred to four public and private specialists to get answers and eventually saw a geriatrician who said three words that changed everything; "Young Onset Parkinson's".

Gerschwitz had only heard of people being diagnosed with Parkinson's in their 70s but she was diagnosed in late 2019, when she was just 45.

Young Onset Parkinson's refers to when the disorder is diagnosed before the age of 50, though the symptoms are typically the same as older patients.

Motor symptoms can include tremors, slowed movement and muscle rigidity, while non-motor symptoms are varied and can range from sensory dysfunction - like Gerschwitz smelling electrical burning - to fatigue, swallowing difficulties, cognitive changes and more.

The diagnosis blindsided her and her family, including her three children; sons Jayden, 27, and Reece, 22, and daughter Melissa, 15.

"People I have known for years see me in public and turn the other way."

"After my diagnosis, Melissa was probably the one that was happy we finally had an answer and didn't think twice about being involved and becoming my young carer," Gerswitch says.

"My home life has changed from being a sole, independent parent to a person who has to rely on carers, friends and family to complete things like housework and cooking."

Her sons live out of home and didn't fully understand her diagnosis at first, but never responded negatively to it. The same can't be said of strangers.

Sandi Gerswitch out hiking after her diagnosis.
Sandi Gerschwitz out hiking after her diagnosis. (Supplied)

Since her diagnosis, Gerschwitz has faced subtle discrimination on a daily basis, from people pointing and staring, to assuming she's drunk or on drugs because of her motor symptoms.

"People I have known for years have seen me in public and turned the other way," she reveals. Strangers sometimes assume she's lying about her condition.

"It is heartbreaking for people with disabilities to face such belittling behaviour while they are already experiencing something tough enough."

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Gerschwitz was also forced to give up her hairdressing career, moving into fashion retail for a while before her symptoms made it too painful to continue working.

Sandi Gerswitch is now gearing up to trek Everest.
Sandi Gerschwitz is now gearing up to trek Everest. (Supplied)

"There has been and continues to be a grieving process for not being able to work and do what I love to do. Hairdressing was my first love," she adds.

Since losing that passion, Gerschwitz has thrown herself into a new love for walking, which helps slow the progression of Parkinson's by raising the dopamine her brain can't produce enough of.

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Now she has big plans to take things to the next level by conquering the Everest Base Camp trek from April 29 to May 18, alongside 11 other people aged 18 to 70.

They'll be tackling the trail to support Shake It Up Australia, which funds groundbreaking Parkinson's research for better treatment and ultimately aims to find a cure.

Gerschwitz has been preparing with multiple personal training and physiotherapist sessions each week, as well as regular treks up Mt Ngungun and Mt Coolum in Queensland.

Her visit to Everest will be her first time overseas and Gerschwitz wants to prove to other Aussies that people with Young Onset Parkinson's are worthy of compassion and respect.

Aussies who want to put their money where their mouths are can support the Shake It Up Australia Foundation by donating or getting involved in Shake It Up's Pause 4 Parkinson's campaign or the Virtual Everest Trek.

Sandi and the Trek Ready Himalayas team are taking on Mt Everest to raise funds for the Shake It Up Australia Foundation, which ultimately aims to find a cure for Parkinson's. You can lend a hand by getting involved in Shake It Up's Pause 4 Parkinson's campaign or the Virtual Everest Trek.

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