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Parkinson’s symptoms: Steph’s ‘sparkly’ mum was overcome with crippling anxiety from Parkinson’s disease

Stephanie Long has been best friends with her mother, Li, for as long as she can remember.

As an only child, Newcastle local Long knows her parents almost better than she knows herself.

“She is sparkly and exciting and has the best personality,” the 28-year-old told about her mother.

But 18 months ago, everything changed.

Long returned from an eight-week holiday to find her “larger than life” mother was now someone who had shrunk in on themselves, crippled with anxiety.

“It was such a shock,” she said.

“I broke down crying seeing her. She’d declined so much.”

Li, who lives in Terrigal, was overcome with anxiety and depression that consumed her.

Visits to the GP failed to provide answers before Li was finally referred to a neurologist, who diagnosed her with Parkinson’s disease.

The family were unaware anxiety and depression are common non-motor symptoms of the neurological disease which is caused by changes in the brain chemistry.

More than 150,000 people in Australia live with the disease — the second most common in Australia behind dementia, according to Parkinson’s Australia.

Fifty Australians are diagnosed with Parkinson’s each day. For the Longs, that was the day “everything stopped”.

“We were in denial and then grief,” Long said.

“It was a really sad time for all of us.”

Long saw her mother go from an “amazing, independent” person, who was known to talk to strangers or go to a party alone, to someone who became so closed off “she didn’t even want to drive around the corner”.

Coming to terms with Parkinson’s has been a confronting journey for the family.

“She kept saying, ‘This is so unfair. I’ve worked hard my whole life. I’ve done everything right. Why is this happening to me?’,” Long said.

Stephanie Long said her mother Li is her best friend. Credit: Supplied

For Long, it meant having to face the daunting reality her parents were not invincible.

“Mum and dad have been my best friends,” she said.

“It’s quite a confronting thing that comes on, the fact they’re not going to be around forever.”

But Li has finally started getting her spark back.

“She said, ‘I’m not going to let this beat me’ and it was such a massive relief,” Long said.

“She’s alive. She has this disease but it’s not going to stop her from living.

“It changes your life but it’s not the end.”

Long organised a fun run last month which attracted more than 150 people and raised more than $8,000 for the Shake It Up Australia Foundation, which promotes and funds Parkinson’s disease research.

“It was an amazing turn out and brought people together,” she said.

The event gave Li the chance to open up to friends about the disease.

“She hadn’t told many people but it’s giving mum confidence and helping her realise she doesn’t need to be embarrassed,” Long said.

Long organised Good Vibrations ’24, a 5km fun run from Nobbys Beach to Bar Beach Bowling Club in Newcastle to raise funds for Shake It Up. Credit: Supplied

‘You can carry on’

As her family takes Parkinson’s day by day, Long wants others to know they are not alone.

“Don’t hide away,” she said.

“There are so many things you have to deal with,but taking care of your mental health is important because that’s often forgotten.

“You’re still there, and it’s still your mental health.”

Give people the space to figure out their diagnosis, she added.

“It can be frustrating giving people advice and them not taking it, but you need to realise that person is grieving the life they thought they’d have,” Long said.

“It does completely change your life plan and that’s difficult to come to terms with.

“Some days are better than others. It’s about accepting that and knowing the bad days will be there but you can carry on.”

This Mother’s Day Stephanie is sharing her story to inspire, engage, and recognise those living with Parkinson’s disease and raise vital funds for Shake It Up Australia. You can donate here.


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