11/06/2026
Today, during carer’s week, I’m sharing something very personal.
It’s now over a year since I first told our family’s story, and in that time Huntington’s Disease hasn’t stood still. It never does. It quietly takes a little more from Sarah, from our family, and from the life we once knew.
This wasn’t meant to become a video diary of Sarah’s decline. In fact, some of the footage was filmed months ago and some much more recently. The timeline isn’t important. The story is.
Many people ask how Sarah is doing. Some ask out of kindness, others out of curiosity. But Sarah is still my wife, the woman I’ve loved for over 30 years, not a collection of heartbreaking images. I’ve always tried to tell our story honestly while protecting her dignity and respecting her privacy.
You don’t need to see every struggle to understand the reality. Sometimes the words tell the story better than the pictures ever could.
Living with Huntington’s can be incredibly lonely. Friends drift away, the world becomes smaller, and every decision carries a weight that’s impossible to explain. Making decisions for yourself is one thing. Making them for the person you love most is something entirely different.
When I made our first film, I never imagined the response it would receive. Hundreds of thousands of people watched it. Families affected by Huntington’s reached out from around the world, saying it helped them feel less alone. Complete strangers took the time to write and offer support, proving that kindness often comes from the most unexpected places.
This film isn’t about asking for sympathy.
It’s about raising awareness of a disease that still has no cure and that many people have never even heard of until it affects their own family.
If you watch it, thank you.
If it moves you, please consider sharing it.
Because every share, every comment and every conversation helps more people understand what Huntington’s Disease really does behind closed doors.
Our story hasn’t ended.
We just don’t know how much time is left to tell it.
