Walk for PSP: Remembering and celebrating Ronda
Ronda Boltje didn’t ask for much in life, so when her daughter decided to open a fundraiser in her honour, just about everyone she knew was willing to give a dollar.
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A fiercely independent woman, Ronda dedicated her life to bringing joy to those around her. She spent four decades as a teacher and raised two daughters alongside her husband, Chris, in South Australia.
Together they travelled the world, basking in new places and cultures. Ronda was adventurous, hopeful, a stickler for the rules, and most importantly loved by everyone who met her.
But her life changed in 2020, when a period of clumsiness and falls led her to seek advice from a GP. After several months of testing, based on her symptoms, Ronda was diagnosed with Progressive Supranuclear Palsy (PSP).
It came as a huge shock to her and her family, especially her daughter Rebecca, who despite working in healthcare had never heard of the condition.
“I searched what it was, and I broke down in tears. Reading there was no cure, and a lifespan of 10-years was heartbreaking,” Rebecca said.
“Her diagnosis was symptom based as she had a cochlear implant and was unable to get an MRI due to the metal implant.
“Unfortunately, mum passed away five years after her diagnosis, so we had even less time than I thought, but she potentially had the condition earlier and it was not found until a change in medications exacerbated her symptoms.”
Challenges after diagnosis
Though they had a name for what was affecting Ronda, Rebecca said the challenges of navigating the medical system with a rare condition were immense.
Watching as Ronda’s condition worsened was difficult for the family, who wanted to support her and ensure she had the best care available.
PSP continues to be an underrepresented and often misunderstood condition within the medical field. It meant Rebecca and her family often struggled to get straight answers to their questions which made future-planning difficult.
As Ronda’s PSP progressed, her mobility declined and her need for care increased. It was a big shift for the Boltje family to step into caring roles for the first time, but one they took in their stride.
“Dad was always there for her making sure she had everything she needed, redesigning the house to be able to keep Mum home and keep comfortable with lifting chairs and beds,” Rebecca said.
“When we were no longer able to care for Mum, Dad organised NDIS support which progressed to 24/7 support. She was fiercely independent it was hard to convince her to use a walking frame and eventually a wheelchair.”
As Ronda progressed into out-of-home and eventually hospice care, finding carers who were trained and understood PSP was difficult.
Though they found a “fantastic” care team who loved working with Ronda to keep her safe and comfortable, there were hiccups along the way.
“A lot of carers didn’t understand about it, but our team in the end were amazing and all understood very much,” Rebecca said.
“PSP is a condition that affects sight, movement, swallowing and anxiety. Unfortunately for mum she was also deaf so could not hear anything without her cochlear which was scary for her.”
As her condition worsened, cognitive decline meant Ronda sometimes struggled to understand new limitations. She would ask for things she could no longer eat, which led to scary choking instances.
The Boltje family hopes those occasions were learning opportunities, that appropriate judgement should be taken when caring for people with conditions such as PSP.
Fundraising together
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Over the years, Ronda began to speak with her daughters about starting a fundraiser to help raise awareness and funds for future PSP research.
As she moved into hospice, Rebecca decided to organise a fundraising walk along the Pioneer Women’s Trail. The route was long and through varying terrain, but the group completed it much faster than anticipated.
The trail had reminders along the entire 19-kilometre route of Ronda and her life.
“I chose the Pioneer Women’s for a few reason, mum loved autumn leaves, the town of Stirling, Mum and Dad started their honeymoon near Eagle on the Hill where we walked through, it had views of the country where they owned their first home, the city where we lived, and the beach that mum loved,” Rebecca said.
As they walked the group shared stories about Ronda and her profound impact on their lives.
Ronda passed away on 5 April 2025, just a month before the walk took place, but the pride she had knowing it was coming will not be forgotten.
Watching as they eclipsed their first target of $1,000 just days before her death, Ronda encouraged them to keep raising more.
“When mum was in hospice, I shared with her that I would be doing it for her, she was very happy and followed along until we reached $1,000,” Rebecca said.
“She held up a thumbs up and a 2 – aim for $2,000. She was never one to ask for money, so to help others by asking for donations was meaningful to her, she would have been so happy to hear the final amount and that it keeps growing.”
They raised more than $3,000 in Ronda’s honour.
Hopes for the future
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PSP is a devastating condition with no cure or treatments to slow progression.
Before her passing Ronda spoke with Rebecca about the impact of the condition on her body, and her hope that in the future no one will need to experience what she did.
“Knowing that mum was so proud and asking all the time about donations pushed me to finish the walk,” Rebecca said.
“In her final days mum cried saying she was a good person, no one deserves the kind of pain she and others have gone through, and that she wouldn’t wish it on anyone.
“As hard as it was to hear, she was right, so if I can help raise awareness and help others with the condition that would make me and mum so happy, and to help in and way to find a cure.”
Rebecca plans to do another walk in 2026 in her mum’s honour, in either May Progressive Supranuclear Palsy Awareness Month or June, Ronda’s birth month.
Approximately 180 Australians will develop the first signs of PSP each year, with an estimated 1300 Australians living with the condition.
Fight Parkinson’s is Australia's leading support organisation with a dedicated commitment to research, education, and support for people with PSP to live full and active lives for as long as possible.