Stephanie Boltje, a reporter for the Australian news program The Drum, shared her family’s experiences after her mother Ronda was diagnosed with progressive supranuclear palsy.  

The first signs that Ronda had PSP came in 2020, coming in the form of slurred speech and the occasional fall. It wasn’t long before Ronda began to show other symptoms common to PSP. Boltje writes that, among other symptoms such as stiffness and difficulty swallowing, Ronda can at times get very focused on small things.  

Boltje noted the lack of awareness of PSP in Australia, and that more people in the country could have it and not know. “Fight Parkinson’s says only about 22 per cent of people in Australia with PSP get the right initial diagnosis,” Boltje writes.  

Dr. Sam Bolitho, a neurologist at St. Vincent’s Hospital in Sydney, commented that symptoms PSP shares has with Parkinson’s disease is a major contributor to misdiagnosis. Because of a lack of biomarkers, PSP and other forms of frontotemporal degeneration can be difficult to diagnose in general.  

An essential part of raising awareness is sharing the experience of living with PSP; as Ronda recommends, it is important to talk with loved ones.  

“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,” Rhonda says.