08/04/2026
I wanted to explain why I chose to speak publicly.
This was not just about telling my story. It was about raising awareness of frontotemporal dementia, helping people feel less alone, and using my voice while I still can.
Another part of this is that I am also trying to understand as much as I can about what may help in situations like mine.
I have been looking more closely at research in inherited forms of frontotemporal dementia, including C9orf72. Some of it suggests that physical activity, cognitive engagement, and cognitive reserve may be linked to slower decline and greater resilience.
That does not mean prevention or false hope.
But it may mean the picture is more nuanced than being told there is nothing worth doing, which was very much part of the experience I had through genetic counselling.
The article is in the link in my bio.