Week 1: A New Road We Never Expected
I Am Their Voice: A Guide for Caregivers and Advocates
Hi, and welcome.
If you’ve found your way here, chances are you — like me — know the complicated, confusing world of early-onset frontotemporal dementia (FTD). Maybe it’s touched your family. Maybe it’s your diagnosis. Or maybe you’re just beginning to suspect that something isn’t quite right. Wherever you are in this journey, please know this: you’re not alone.
When we first heard the words frontotemporal dementia, it felt like someone had pulled the ground right out from under us. I’ll never forget sitting there, trying to process what the doctor was saying — something about personality changes, language loss, and no real cure. It didn’t make sense. After all, this wasn’t supposed to happen to someone so young, so full of life.
That’s the thing about FTD: it doesn’t follow the rules we expect from dementia. It sneaks in, not with forgetfulness at first, but with changes in behavior, mood, or speech. Things that are so easy to misread — as stress, depression, even just "getting older." It often takes years to get a proper diagnosis. Years of wondering. Years of second-guessing ourselves.
This blog series is my attempt to shine a light for anyone who is walking this uncertain road. I want to talk honestly about what it’s like to live with, and alongside, early-onset FTD. The heartaches, yes — but also the unexpected moments of beauty, humor, and love that this journey can reveal.
Each week, I’ll share pieces of our experience:
How we learned to adapt to new challenges.
How we found strength in unexpected places.
How we continue to find meaning, even on the hardest days.
I am not an expert in medicine. I’m not here to give clinical advice. I’m here as a fellow traveler — someone who has faced the fear, the uncertainty, the exhaustion... and is still finding ways to move forward with compassion and hope.
If you’re reading this and feeling overwhelmed, let me say this clearly:
You are stronger than you know.
You don’t have to do this alone.
There are people who understand.
In the weeks ahead, I hope you’ll join me as we talk about all the pieces of this complicated, beautiful, heartbreaking journey.
Let’s walk it together.
Until next week!