The Deans - Support Frontier Research Group
I know my husband, Stephen, would want to share his own story about his diagnosis of Primary Progressive Aphasia (PPA) – an extremely rare form of dementia – but he is unable to. PPA is a neurological disease of the brain which cruelly affects his speech and ability to communicate. Stephen is only 49 years old.
The journey to this diagnosis was a long and frustrating one. Over three years ago, Steve started to experience headaches. He suffered with the headaches day and night. Visits to a number of neurologists were unsuccessful and he continued to battle on with the excruciating headaches.
I then contacted a neurologist at St Vincent’s Hospital, Sydney. At last the ball started rolling.
After a multitude of tests, Steve was diagnosed with PPA. This was a heart breaking diagnosis not only for Steve, but for me, our three beautiful children (aged between 11 and 18) and our friends and families.
Steve is now under the care of specialists at the Brain and Mind Centre at the University of Sydney.
Before Steve’s diagnosis he was an articulate, active and healthy person. He’s always been into sports, especially rugby league. In our small community of Tumut in the Snowy Mountains, if Steve wasn’t helping a mate finishing off some home reno’s, he would be working tirelessly at the family bakery. No-one would have a bad word to say about Steve - he is everyone’s mate.
Three years on, Steve struggles to form words. He has standard responses which sometimes are not appropriate. He often says ‘yes’ but means ‘no’ and vice versa. The hardest part of his condition is the lack of communication in our family. Our kids have watched their dad deteriorate quite rapidly. He is unable to have a conversation with them. They are never quite sure what he means when he speaks.
We are fortunate to have regular appointments with the Frontier Frontotemporal Dementia Research Group. The Group – which receives both government funding and the generosity of private donors – works tirelessly to better understand PPA. There is still little known about its causes and how it can be treated.
100% of the donations received will be directed to Frontier Research. I urge you to make a donation – no matter how small – to help us beat this cruel and debilitating disease.