Mae was formidable, remarkable, but Progressive Supranuclear Palsy took her away too soon
“She’d fall and make a mess in the kitchen - and blame herself. It broke my heart.”
These are the words of Queeny Stafford, who cared for her mum in the years before and after Mae’s diagnosis with Progressive Supranuclear Palsy (PSP). Queeny generously shared her story with us in the hope that other families will not feel as alone as she did, traversing the long and difficult journey to diagnosis.
When Queeny watched her mum struggling with unexplained falls and changes in movement and thinking, she knew something wasn’t right.
“I work in healthcare, and I began to suspect PSP.” But PSP is a complex, rare disease that is often misunderstood.
It was a routine visit to an optometrist that finally led Mae’s healthcare team to a diagnosis. At last Queeny had a diagnosis and words for her mum’s condition - PSP. By the time Queeny’s mum was diagnosed, her PSP symptoms were advanced. It was also too late for Queeny’s mum to participate in any clinical trials to have some hope of a better quality of life with the time she had left.
“It was a relief - and a heartbreak when the diagnosis came,” Queeny shared. “At last, we had a name. We could advocate for her care.” In practice this meant that Queeny could share some of the PSP symptom management that she learnt about from the Fight Parkinson’s Health Team. “We were able to say to her carers, “Her eyes are closed because of PSP, not because she’s sleeping.”
Dealing with a late diagnosis was very difficult for Queeny and her family. “I’ve seen palliative care before, but I was not ready for what a PSP diagnosis meant for my mum’s care” Queeny said. “It was beyond all that I had ever seen.”
Queeny’s story is not unique. Every week, more families across Australia face similar heartbreaking journeys, with no cure, no treatment to slow progression, and far too often, long, and difficult path to a late diagnosis.
At Fight Parkinson’s, we believe this must change.
We know the future can be different - with research that delivers earlier diagnoses, better treatments, new models of care, and ultimately, life-changing cures.
That’s why Fight Parkinson’s is committed to supporting research into better understanding Parkinson’s and the Atypical Parkinson’s conditions. We’re growing the Fight Parkinson’s Research Fund to fund Australian-led, promising, and under-resourced projects that aim to change the future for people living with PSP, MSA, CBS, and Parkinson’s.
It is part of our three-pronged approach to fight Parkinson’s and the Atypical Parkinson’s conditions of PSP, MSA and CBS – an integrated multidisciplinary strategy covering research, support, and education to tackle the profound challenges of these conditions.
Innovation and understanding come at a cost, and we can’t do it without you.
Please consider donating to the Fight Parkinson’s Research Fund today. Your gift will fund vital research, so no family must face what Queeny’s did.
A donation to the Fight Parkinson’s Research Fund means that we can invest in:
- Research into earlier diagnosis
- New models of care and treatment
- Clinical trials and prevention research
- Technology that supports timely detection
- Innovative projects that otherwise go unfunded
PSP robbed Queeny and her family of their beloved mother and grandmother too early, but with your help we can invest in research so that families like Queeny’s don’t have to wait years languishing for answers. Investment in research could mean better care, earlier support, and more quality time together.
“No family should be left in the dark for so long,” Queeny said. “Let’s change the story for other families.”