The signs began with slurred speech and the occasional fall. Then my mum was told she had about six years to live.
It has been two years since then, and things like walking down the street, getting dressed or making the bed are now a thing of the past for her.
Ronda Boltje, my mum, was diagnosed with PSP — progressive supranuclear palsy.
This brain disorder moves quickly and impacts certain parts of the brain that control thinking and movement.
It took a lot of effort to convince my mum to use a walker when she was first diagnosed two years ago; now, she is navigating a wheelchair.
A rare diagnosis
About 180 Australians will develop the first signs of PSP each year and there are about 1,300 currently living with it, according to advocacy group Fight Parkinson's.
There is no cure, and researchers still do not know what causes it.
It was not the diagnosis that Ronda, a former primary school teacher, was expecting.
The neurologist told her: "The maximum time you have to live is about six years; it's about half of Parkinson's."
"But he said that changes for everyone," she recalls.
Mum is 65 years old, and most of those diagnosed with the condition are around her age.
Dad, Chris Boltje, says it was upsetting to hear the progression happens quickly, but he has learned to focus on what he can do to help.
"I go into 'fight mode'," the retired cop says.
Impulsive behaviour and awkward movements
Sam Bolitho, a neurologist at St Vincent's Hospital, says life expectancy is a broad spectrum, and he is looking after patients with PSP who "live for well beyond six years and still have a good quality of life".
Mum's PSP symptoms include getting very focused on small things that can consume her thoughts for days, and her social filter has become less tuned in.
Changes to thought process and impulsiveness are among the clues used to diagnose this type of condition, Dr Bolitho says.
Other clues include balance and walking issues; stiffness; not being able to track left and right or up and down; apathy; bladder control; swallowing problems; and quiet or slurred speech.
Mum fits the bill.
Her falls have increased and would be more if Dad was not there to catch her.
"Bending down, I feel like I am going to fall over, and I have lost confidence in myself," mum says.
My sister Rebecca explains she feels like she is "on edge when mum is walking" – and I feel the same.
Especially when she is not wearing her cochlear implant and cannot hear what is happening around her.
"Every fall is heartbreaking to see; every medical alert call I get makes my heart race," Rebecca says.
More Australians could have PSP – and not know it
Fight Parkinson's says only about 22 per cent of people in Australia with PSP get the right initial diagnosis.
Dr Bolitho says this is because PSP shares similarities with Parkinson's.
"Classically, Parkinson's disease starts in one part of the brain … the part that makes dopamine," he explains.
Parkinson's patients are treated early on with dopamine replacement medicines, and they improve.
But PSP does not react well to these medications because it has a broader impact on the brain, Dr Bolitho says.
The NDIS delivers support – but it's a challenge
In Adelaide, dad is installing heavy-duty tiling in their house for equipment mum will soon need and widening the doors so mum can get through with her wheelchair.
He can no longer leave mum alone in their home.
Through the National Disability Insurance Scheme (NDIS), mum gets support for personal hygiene, speech therapy and physical activity.
Some of Dr Bolitho's patients have not been so lucky.
"Many people with degenerative problems like PSP are rejected initially on the NDIS," Dr Bolitho says.
But Dad tells me he gets frustrated by a system that does not move quickly enough as my mother's condition deteriorates.
"I would like to get things in place before further progression actually happens, because once it happens, we need it there and then," he says.
'You can't change the situation, but you can make it better'
Mum advises anyone with this condition — or a similar condition — to talk about their experiences.
"It is important for the family to know what you are going through because you can't change the situation — but you can make it better," she says.
Mum said to my sister the other day: "Imagine what Lyla (Rebecca's four-year-old daughter) will be like when she's 14, I probably won't be around to see it."
My sister reacted by telling mum, "Don't say things like that!" But she knows it could very much be the reality.
Mum's diary, now filled with medical and therapy appointments, has become the bible in their house.
But the appointments to catch up with friends and family mean the most to her.
