the NeuRA blog

Men… they love their sheds, their garages, their space. They tinker, they build, and they think.

Keith was no different. His garage was meticulously organised, with a spot for each tool and projects always on the go.

It is those closest to us that notice the subtle changes; the little moments that cause us to furrow our brows and wonder why our loved one said or acted in ‘that way’.

That moment came when Keith showed no motivation or ability to set up his garage in his new home that he and Lucille had recently moved into. Totally and utterly out of character, it tragically pointed to a life in decline.

“I said to myself, why is Keith so different? And as I said ‘different’, I stopped. I remember what my father, a GP, had said about my mother when he suspected she had Alzheimer’s disease; that her behaviour was different.”

Lucille and Keith’s world soon changed. A neurologist gave the heartbreaking diagnosis of frontotemporal dementia (FTD). One year later, Keith was also diagnosed with Parkinson’s disease.

“There is an over-riding grief when the person you love has dementia. You can only stand by watching as the person you love loses skills and abilities, one by one,” Lucille remembers. 

If you’ve watched someone decline like Lucille did, you’ll know this grief; this pain of a man or woman you love slowly losing their grip on life.

After attending a presentation by a senior NeuRA researcher about the need for brain donation and its immense value to medical research, Keith and Lucille decided it was for them. The Sydney Brain Bank, housed at NeuRA, accepts tissue from both people with neurodegenerative diseases as well as healthy, aged individuals for comparison.

The Sydney Brain Bank prepares, stores, and distributes brain tissue samples to researchers in Australia and around the world. We currently have 540 brains in the bank. Using this precious gift, researchers learn more about an illness than scans, medical history and clinical presentation can reveal.

With no current government funding, financial donors keep the Sydney Brain Bank open.

Without your help, the future of the Sydney Brain Bank is uncertain.

Keith passed away in 2008, with Lucille at his bedside. With great dignity and respect, the Sydney Brain Bank arranged Keith’s brain donation without any disruption to funeral plans. Later, NeuRA researchers informed Lucille that Keith had suffered from both frontotemporal dementia and Alzheimer’s disease. Lucille also discovered that Keith never had the pathology that underlies Parkinson’s disease, despite years of treatment for this disease.

Keith’s legacy lives on in the memories of his loved ones. He has also created a legacy of discovery, with his precious gift making research possible today, tomorrow, and for years to come.

When the time comes, Lucille will also donate her brain. But now without donations, and with no government funding, the Sydney Brain Bank may not be able to facilitate future breakthroughs and advancements.

Please consider how you can support the vital research at the Sydney Brain Bank today. Or perhaps you’d like to become a Discovery Partner, and make a monthly commitment that ensures this precious resource continues.

For more information, or to make a donation, click here.