When former biology teacher Sandra Elms first noticed a tremor in her right arm, she thought it might be thyroid problems. She was shocked when a neurologist told her it was Parkinson's.
"My first neurologist told me in 10 years you'll be in a wheelchair," Ms Elms said. "I was just so taken aback that he could say that to someone."
Fast forward 12 years to 2024, and she is in her 70s and wheelchair-free.
Ms Elms found that a combination of medication and staying active was instrumental in managing her symptoms.
"There is no cure and eventually you will go down with it, but in my case I have been very active mentally and physically, and that has really helped me," she said.
Born in England, growing up in Perth and now living in Newcastle, Ms Elms has worked as a biology teacher and medical researcher.
Diagnosed in her mid-60s, Ms Elms was affected by external and internal tremors.
"It affects all the muscles in your body, you can have problems with your voice, swallowing, with your walking, and eyesight," she said.
"External tremors are easy to see but the tremors I have inside me, I can't explain, it is very unpleasant."
What is Parkinson's
Parkinson's is a movement and mood disorder that can cause slowness of movement, muscle rigidity, instability, tremor, depression and anxiety.
Parkinson's NSW said the number of people living with Parkinson's in Australia is somewhere between 84,000 to 212,000.
It is the second most common neurological disease in the country after dementia.
According to Parkinson's NSW, there is no known cause or cure for the disease but people can manage with medications, surgery and physical and supportive therapies.
'Anxiety and depression crumbling in'
Stephanie Long's mother, Liane Long, was diagnosed with Parkinson's 18 months ago at age 54.
"She went from this positive, bubbly person, and declined dramatically," Stephanie Long said.
"The anxiety and depression just came crumbling in on her."
Ms Long felt her mother was embarrassed of her diagnosis and was worried how others might perceive her.
For Ms Long, the diagnosis is still confronting, and she can't imagine how her mum feels.
"It's the first time I've ever thought about my parents not being here," she said.
But a new medication and an upcoming fun run brought hope.
On Sunday, April 14, Ms Long will hold a five-kilometre Fun Run and Walk from Nobbys beach to Bar Beach Bowling Club to raise awareness for the condition. Eighty people have signed up.
She said her mum was excited to walk in the event and she was motivated to get active.
"We are trying to keep moving forward and not dwell too much on what's going on," Ms Long said.
Lack of access
For Parkinson's treatments such as exercise programs, the National Disability Insurance Scheme (NDIS) provides funding for those diagnosed under 65.
Ms Elms said that while she could access funding through My Aged Care, it was far less than what was available under NDIS, and she had spent a lot of money on programs.
"The funding should be because you have a disability, and the disability doesn't go away when you are over 65," she said. "There is a discriminatory factor there."
She said resources and funding for support groups were limited in locations such as Newcastle.
Stephanie Long lives in Newcastle while her mum is on the Central Coast. She agreed that finding medical support outside of major cities was challenging. Her mum waited months to get a diagnosis.
Ms Long said, despite funding from NDIS, each doctor's appointment for her mum cost around $600.
Professor Michael Breakspear, from the University of Newcastle, has researched surgery called deep brain stimulation (DBS).
He said DBS allowed people who were physically immobilised to become more active.
But this sort of advanced surgical care is accessible only in major cities. He said the closest clinic to offer DBS was in Sydney.
Professor Breakspear said more funding could be funnelled into medical research and treatments for the disorder.
Keeping active
Ms Elms runs the Newcastle Parkinson's Choir, Shake, Rattle, and Roll, and she said it was a fantastic way to support others living with Parkinson's.
She said most choir-goers weren't singers, and enjoyed the weekly sessions where they did breathing and voice exercises.
"It can be a very debilitating disease, and a lot of people become very isolated,"she said.
"People just need to try out some of the activities and they would find everyone is so supportive."
Dance 4 Wellbeing's Jessica Conneely holds weekly movement classes for people with Parkinson's at Warners Bay Theatre.
She said her classes helped physical mobility, cognitive function, timing, spatial awareness, and provided a social outlet.
"There needs to be something that is really accessible to everybody, we dance seated and standing, and keep people motivated and engaged," Ms Conneely said.
She will run a free session at Lake Macquarie Landcare centre on Thursday, April 11, at 10am for World Parkinson's Day.
For help, information and advocacy call Parkinson's NSW on 1800 644 189.
