Just joined ALZConnected and saw your post. My spouse (69) was diagnosed with Posterior Cortical Atrophy almost exactly 1 year ago.  Her memory and executive function have been stable since, but her visual capacity has been noticably diminishing.

Would be happy to share experiences.

I'm so sorry. It is exhausting and excruciating to watch our loved ones go through this. I'm not even sure what stage my husband is. He is still high functioning. The FB group sounds wonderful but I hesitate to do that as he has not informed his employer yet and is concerned for his job.

My husband started showing worrisome signs in July of 2020 when he had to get his license out because he could not remember our address. He was 52 at the time. There were other concerns he was having. Finally saw the Dr in early 2021 and had an MRI done but was told no significant findings.

A neurologist was the next step but he put it off until 2022. They had him do a sleep study and he had mild sleep apnea so tried a cpap but that didn't help. Had neuropsychological testing done and they suggested another scan and recommended a different neurologist.

The new neurologist diagnosed DH with PCA in May of 2023. He still does pretty good on most things. His biggest issues are simple math, typing and using tools. We just bought a house and he did a lot of painting and his cutting in is still meticulous.

For his typing, we got him a high
contrast keyboard with yellow keys and bold, black lettering. That has helped.

We have been arguing a lot lately with
the stress from this move and getting
the other house ready to sell. It's been a
long haul and probably a bad move but
we had a lot of stairs at the other house and my 88 year old mom lives with us so
we needed a ranch for her now and his
future.

That is it for now. Sorry for going on, just looking to connect

Hello i am Luc from the Netherlands. My wife has PCA and wanted to write a book about her experience.

She succedeed and was interviewed and punblished as ( "Declaration of love" was added through the interviewer, we need to be humble.

A Declaration of Love to Life with PCA Posterior Cortical Atrophy

Date: October 14, 2025

In her book "My mind wanders" Laila Keuning compellingly describes what it's like to live with Posterior Cortical Atrophy (PCA), a rare form of dementia that affects the visual part of the brain. We spoke with her and her husband, Luc Bakker, about their experiences with this disease.

Laila, can you take us back to the moment of my PCA diagnosis?

"Sleepwalking and hallucinations led me first to the near hospital, and then to a specialized Alzheimer Center for a second opinion. When I received the diagnosis of Posterior Cortical Atrophy, it felt like the ground was falling away from under me. Everything I took for granted—reading, writing, listening—became uncertain. The diagnosis brought sadness, but also relief: finally, recognition. I knew there was no cure, but it fueled my desire to write, to give meaning to what was happening to me."

What changes in daily life were the most profound?

“The world has shifted: images blur, distances no longer make sense, objects change shape. A sign can seem like a shadow, a staircase an abyss. It erodes my self-confidence. Yet I learn to adapt again and again. With my husband, Luc, I've found a rhythm full of peace and humor. I discover my strength in vulnerability.”

How do you explain PCA to others?

“I often say: ‘My eyes see, but my brain doesn't understand.’ There's a disconnect between seeing and understanding. Sometimes I see something, but I don't know what it is or how to use it. In my book, I use the metaphor of the 'pecas'—little creatures that tease apart connections. In this way, I make visible what would otherwise remain invisible.”

Why did you want to write a book?

Writing is my way of surviving. First short notes, later chapters. I wanted to make something tangible of the invisible, not just for myself, but also for others in a similar situation. Sometimes I had to stop due to fatigue or emotions, but there were also moments of deep joy. Especially when my granddaughter drew another 'peca,' then I knew: life is still full of color.

Luc, how did you experience these years?

The diagnosis changed my life, of course. At first, I felt powerless, but together we grew stronger. What helps is keeping talking. About what's difficult and what remains beautiful. We laugh a lot and find peace in our home, next to the church.

Writing the book 'My mind wanders' became a shared journey: transforming grief into something alive.

Which reactions to the book touched you most?

People recognize themselves in the book, feel seen, or understand their loved ones better. That touches us deeply. We see that 'My mind wanders' sparks conversations about fear, loss, and beauty. Exactly what we hoped for.

What do you want doctors and healthcare providers to know about PCA?

That it's more than a visual impairment—it affects everyone's life. Listen to the story behind the symptoms. See the person, not just the patient. Too little is known about PCA; more research and understanding are desperately needed.

What do you hope readers take away from the book?

That life, despite uncertainty, remains meaningful. That vulnerability can be strength, and love is more important than solutions. 'My mind wanders' isn't a goodbye, but a declaration of love to life, with all its quirks and brilliance.

Laila Keuning's book 'My mind wanders' is available as a e-book at Amazon Kindle and as a real book at Boekengilde.nl