A MARATHON A WEEK

I’m running the Sydney Marathon to raise funds for a charity that is doing brilliant work for those who have a form of rare dementia called frontotemporal dementia (FTD). It’s what my amazing mama died from in 2020 and is an early-onset dementia, meaning it typically develops between the ages of 45 and 65.

My mother was in her 50s when she started showing signs of cognitive illness. She lost her language and her independence but she didn’t lose her memory. She died aged 72.

The Australian Frontotemporal Dementia Association is a non-profit that aims to raise awareness and understanding of FTD. It’s the second most common form of dementia after Alzheimer’s and yet many people have never heard of the disease.

The organisation also puts an emphasis on the support of carers. The burden of FTD stretches well beyond the person who has the disease. My mother’s FTD occasionally felt like being trapped in a no-man’s land of ambiguous grief, misunderstandings and a society that was unable to recognise cognitive decline beyond memory loss. It can be lonely and heartbreaking. I have experienced the power and love of carer groups and the benefits they can bring to those who look after a loved one with FTD.

The AFTDA works with Frontier at the University of Sydney’s Brain and Mind Centre, which is doing fantastic and much-needed research into FTD. I’ve been involved in the university’s pioneering DINAD study, for which my body, brain and cognition have been repeatedly scanned, tested, recorded and turned into realms of data.

If you or anyone you know cares for someone with FTD, please get in touch with the AFTDA – they can put you in touch with a carers support group near you.

If my running a marathon means that one carer alone is encouraged to seek support where they might otherwise have tried to cope alone, I’ll consider the whole endeavour a win!