Laila Keuning, the author of "My Mind Wanders" (“Mijn hoofd verdwaalt” in the original Dutch), lives in the Netherlands and has a diagnosis of Posterior Cortical Atrophy (PCA), a rare form of dementia. After receiving her diagnosis, she felt that there was very little information available from the perspective of someone actually living with this condition and so she decided to write a book about her journey, her thoughts, her challenges, and the way she experiences the world around her.
“Sometimes there is a moment in life when everything shifts. For me, that moment was when I received the diagnosis of Posterior Cortical Atrophy (PCA). A rare, bewildering brain disease that stealthily works its way into your thinking, your seeing, and your doing. From that moment on, nothing felt certain anymore, nothing was the same. Instead of losing myself in fear, I began to write. At first just brief notes and fragments, which later grew into this book. Not because I see myself as a writer, but because I wanted to capture something—for myself, for my loved ones, and for others who live with uncertainty or confusion. This book is my voice, my search, and my way of finding some grasp on an illness that remains invisible to me and even to much of the medical world.
The “pecas”—the invisible little creatures that live in my head—are a metaphor. Invented by me, but brought to life and made visible through the drawings of my granddaughter, which you will see throughout this book. They form a red thread, making visible what is so often unseen: the damage, the frustration, but also the humor and the hope.”
Laila Keuning believes that sharing personal stories and experiences can help others feel less isolated and can provide insight into the daily realities of this rare condition. As someone living with PCA, raising awareness of PCA is very important to her, and she is on a mission to share her story as widely as possible in the dementia community and beyond. Her story has recently been shared within the ALZConnected community of the Alzheimer's Association in the US and she is delighted to also share her story with Alzheimer Europe’s network, in the hope that this book can help increase awareness and understanding of PCA among patients, families, caregivers, healthcare professionals, and the wider public.
Amazon link to “My Mind Wanders”: https://www.amazon.com/dp/B0FRMWZZTQ
