Parkinson's advocates ramp up calls for action
Being diagnosed with Parkinson's at the age of 44 came as a huge shock to Belinda Zipper, but she says it also came with a silver lining.
Shortly after being diagnosed she realised it was time to start being true to herself and came out as a transgender woman.
"I came to realise that my body was actually telling me that it's time to start living my life as who I'm meant to be because I don't know how much time I've got left," Ms Zipper told AAP.
"I sometimes ask myself, would it be better to have been a man and had no Parkinson's? I say no."
"I'd rather (have) a shorter life but live as me, even with this disease. So it's really hard and heavy to carry that."
She works full-time and doesn't have stereotypical symptoms like tremors or shuffling, but when her medication wears off her face muscles freeze which can draw unwanted attention to her face.
Ms Zipper is among one in five Parkinson's patients who are diagnosed before their 50th birthday.
It's the fastest growing neurological condition globally and about 220,000 Australians have the condition right now but that's expected to increase as the population ages.
There are fears too many patients could fall through the cracks because access to experts and support systems is patchy, according to Fight Parkinson's board member and physiotherapist Professor Jennifer McGinley.
"It's kind of a lottery about where you live, what your resources are and your connections as to whether you are necessarily able to access that," she said.
"Particularly in regional and rural (areas) we know that people can have a lot of difficulty finding a specialised neurologist, physiotherapist, occupational therapist, speech pathologist."
The organisation wants more Medicare rebates for appointments, greater access to specialists and extra research into the disease but Ms McGinley says awareness and access to information are still major barriers.
"We know that the community has a range of abilities, there's culturally and linguistically diverse people who may not stumble across the right information, so it'd be nice to have a more centralised approach," she says.
It can impact people at any age, with symptoms as broad as heightened emotions, pain, fatigue, muscle weakness, changes to bladder or bowel habits and many others.
Parkinson's patients Christine Anderson and Stephen Dunn say recognition is vital, pointing to events like Fight Parkinson's Walk in the Park event on March 26 as a way to show support and raise funds.
The main event is in Melbourne's Federation Square, with other walks around Melbourne and Victoria towns Horsham, Swan Hill and Bairnsdale.
Ms Anderson hopes members of the community will pause to reconsider how they view the disease.
"Parkinson's people are under-represented, we're not out there," the retired school teachers said.
"Parkinson's is illogical, frustrating and confusing, everything requires effort and no one can see the effort that you're putting in."
After his diagnosis, Mr Dunn was determined not to spend his days in a chair reading the newspaper as his father did, so he decided to join a choir.
"I live like there's no tomorrow, make hay while the sun shines this morning," he said with a smile.
While getting out has become harder and more painful when his medication wears off, it hasn't stopped him singing and is looking forward to performing at the Melbourne event.
"I thought 'I'm not going to lose my voice' so I joined the choir and haven't looked back, I love it," he said
"One of the best things I ever did, which probably wouldn't have happened if I didn't have Parkinson's."