Remembering Brian Johnston

Remembering Brian Johnston

Brian Johnston sadly passed away from progressive nuclear palsy (PSP) in April 2023. PSP is a rare neurodegenerative disease that causes progressive lack of coordination, stiffness, cognitive dysfunction and difficulty moving. It is a devastating condition and there is currently no cure.

In memory of her father, Nia Johnston is running a half marathon to raise awareness & research funding for PSP. She spoke to us about her father’s story and the impact of this disease. Thank you so much Nia for creating this fundraiser and sharing your personal experience with us.

If you would like to support Nia, her fundraising page is open until October 17th 2023. Visit fundraising page >

“PSP (Progressive Supranuclear Palsy) is a rare neurological degenerative disease which involves the gradual deterioration of specific parts of the brain. It affects balance, difficulty moving the eyes, cognitive function and eventually and complete slowing down of any movement. There is no cure and at the moment there is no treatment or drugs available to slow down the disease. It is often mistaken for Parkinson’s disease.

Nia and her father, Brian.
Nia and her father, Brian.

My dad (Brian) was a much-loved Husband, Dad and Grandad who was always active and ultra fit. He taught PE (In the prison service) for most of his working life and inspired many to keep moving and be the best physical version of themselves.

Like many neurodegenerative diseases PSP is insidious, it slowly creeps up on you, robbing you of your physical function and independence. It’s hard to accurately diagnose and in our experience starts with a very gradual change in temperament and general personality that can be confusing for those around him to understand. This is followed by balance issues that become more frequent, often involving backward falls, changes in gait with walking reduced to shuffling.

Dad was eventually diagnosed in 2017, aged 71. We made ourselves as informed as we could in preparation for his physical slow decline, we believe Dad’s lifetime obsession with fitness resulted in a strong heart, lungs and an amazing musculature, these were definitely responsible for extending his life after his diagnosis.

Dad’s body couldn’t fight reoccurring urinary tract infections in the last few months of his life and he left us on Easter Sunday this year with my mum, my sister and myself, the ones who loved him so much. Kerry (sister) and I travelled on Friday 7th April to the UK from Australia and we made it to the hospital where we spent the last 4 hours of his life together.

Inspired by my dad, and in an attempt to generate some much-needed funds for the Brain Foundation, I am running in the Melbourne Half Marathon. Research into Rare Neurological conditions is desperately needed but is very costly.

My family and I thank all those who have donated to my fundraising page and particularly thanks the Brain Foundation for the work being done to support those diagnosed and the research they fund.”

Brian and his family when they were younger.
Brian loved exercising and being outside; a passion that he instilled in his children.

Brain FoundationThe Brain Foundation is the largest, independent funder of brain and spinal injury research in Australia. We believe research is the pathway to recovery.