The Deans - Support Frontier Research Group
My husband, Stephen
Every night I worry about my husband, Stephen. I know I should probably be worrying about rostering enough staff at the family business. Or making sure our kids have done their homework, was that assessment due tomorrow? But I can’t. Every night, and into the early hours of every morning, all I can think about is Stephen. What started off for him as headaches four years ago, has now developed into something much more serious.
Stephen has been diagnosed with Primary Progressive Aphasia (PPA) – a rare form of dementia. PPA is a neurological disease of the brain which cruelly affects his speech and ability to communicate. Stephen is only 50 years old.
The journey to this diagnosis was a long and frustrating one. When Stephen started experiencing excruciating headaches, we visited a number of neurologists. The visits were inconclusive. He continued to battle on.
I then contacted a neurologist at St Vincent’s Hospital, Sydney. At last the ball was rolling.
After a multitude of tests, Stephen was diagnosed with PPA. This was a heart-breaking diagnosis not only for Stephen, but for me, our three beautiful children (now aged between 12 and 19) and our friends and families.
Stephen is now under the care of specialists at the Frontier Research Clinic, Brain and Mind Centre, University of Sydney.
Last year, we held an inaugural Golf Day in our small community of Tumut in the Snowy Mountains to raise awareness and funds for Frontier, the Frontotemporal Dementia Research Group. Frontier - which operates partly from government funding and partly from private donors – works tirelessly to better understand PPA.
Thanks to the extraordinary kindness of friends, family and even strangers who were touched by our story, we raised $35,983. To this day, we are completely blown away by this generosity. The Frontier Research Group is using this money to create a language assessment app, designed to be used by clinicians all over Australia and the world. This app will be freely available to all clinicians and will assist them in screening patients with suspected PPA. This is an exciting step forward for PPA research as this condition is often difficult to diagnose, especially in rural towns that do not have specialist services.
If he could, Stephen would say he has the best friends and family a guy could ask for. To those who donated who he had never met, he’d say a wholehearted “thanks, and I owe you a beer”. Then he’d yarn, laugh his infectious laugh, and you’d be great mates. No-one ever had a bad word to say about our Stephen – he was everyone’s mate. But as this debilitating disease takes over Stephen’s life, and our lives, we are even forgetting what he used to say, and how he would say it.
With only 9 out of 100,000 people living with PPA in Australia, there is little known about its causes and how it can be treated, so research is crucial. To help beat this cruel disease, we have organised another charity Golf Day on Sunday 23rd September at Tumut Golf Club. Tee off is at 10am and there will be an auction at the end of day. You can also make a donation at our GoFundMe web page. 100% of the donations received on the Golf Day and via the GoFundMe page will go directly to research. I urge you to make a donation – no matter how small.