Wendy is no stranger to supporting family members with Frontotemporal Dementia (FTD). Wendy’s older sister, Linda, was diagnosed with FTD in 2008, and Wendy and Jeff supported her in care until she passed away in 2014. During this time, Wendy’s brother, Sean, also struggled and started seeing a neurologist. It was later determined that Sean was also developing FTD.
With two close relatives diagnosed with FTD, it was suspected that their conditions were due to an underlying genetic cause, which indicated whether Wendy was also at risk of developing FTD. Subsequent genetic testing at the Frontier Research Group and Gosford Hospital confirmed that Wendy carried the same genetic defect as her siblings. The fallout from these findings meant that Wendy would eventually develop FTD.
The news shocked Wendy and her partner, Jeff, who said she was in denial about whether the genetic findings would mean Wendy would develop FTD, but then Wendy’s symptoms began to emerge.
“I was probably the one who was most in denial, and eventually I had to accept that. And little by little, over the years, I’ve noticed functional changes in how Wendy behaves and what she’s able to do and what she’s not able to do . Most people wouldn’t even know from talking to her that there are areas of life where there is a disability,” explains Jeff.
Today, Wendy experiences problems with daily tasks and decision making; however, she is doing her best to live well with dementia and push back against social stigma by choosing an optimistic outlook:
“I’ve seen signs on the back of cars that said, adventure before dementia,” shares Wendy “and mine is, adventure with dementia.”
As Wendy’s condition is genetic, her daughters recently received a letter from Wendy explaining that if a family member has been diagnosed with the condition, there is a 50% chance of inheriting the condition.
“This meant that both of my daughters made a conscious decision to get some genetic testing. My older daughter did it just for information.”
Fortunately, Wendy’s two daughters do not carry the genetic defect.
Wendy continues to be involved in FTD research with the FRONTIER research group as she wants to help others diagnosed, while living her motto of adventure with dementia.