THE VANISHING TALE OF DEMENTIA
One writer movingly recounts what life is really like with a disease that’s slowly destroying her memory
PICTURE THE following: you go to sit where there is no seat and end up sprawled on the floor, in a less than dignified pose. You become disorientated in a friend’s garden, which is barely bigger than a quilt, and can’t find your way out. You make a beeline for the front of a long, snaking queue, incurring mass fury. You go to a Michelin restaurant, suitably dolled up — and you butter your plate instead of your bread. Welcome to PCA .
No, I had never heard of it either. Nor, unfortunately, had my GP.
PCA stands for Posterior Cortical Atrophy. For an author, as I am, it is pretty inconvenient, as it renders you virtually illiterate. It is the same form of Alzheimer’s which afflicted Terry Pratchett, and usually kidnaps you in your 50s or 60s. It is described as rare. I have my doubts. Why should it be? I believe it is simply undiagnosed or misdiagnosed; not surprising, considering the weird raft of apparently disparate symptoms.
Unlike the more usual Alzheimer’s, which affects the frontal lobes, governing cognitive function and memory, PCA attacks the back of the brain, causing it to wither.This area is responsible for vision; thus, spatial awareness, sequential awareness, orientation, perception, motor skills and, as mentioned, literacy, are all affected. If I had to define PCA, I might liken it to being both profoundly dyspraxic and dyslexic — only worse. Trust me to have something obscure nobody has heard of.
There was a time when my brain and I were on intimate terms; cosy bedfellows privy to one another’s innermost secrets. Now the brain gremlins and I are at war. PCA takes away the free spirit in you. It chips away at confidence, deprives you of independence. The second you walk out through your front door, you feel vulnerable and exposed. I was eventually diagnosed two years ago, but I believe the first signs crept up on me several years earlier. Perhaps I should start with my driving. Oh dear, my driving! I’d loved driving, but increasingly it became a source of dread. I could see perfectly, yet I could no longer judge distances, or where to position my car in relation to the road. I couldn’t work out where or how to pitch my line of vision. Signs leapt out at me, filling me with panic. Busy junctions were a nightmare. I was forever clipping the curb, or, worse, the wing mirror of an on-coming car. I would arrive at my destination wrung-out. I used landmarks, counting them as I passed them unscathed. Reversing down our own driveway became a hit and miss exercise, leaving zigzagging imprints on the lawn.
For the last two years that I drove, I rarely had a passenger, other than my German Shepherd, and even he made it clear he didn’t like my driving. Nobody knew the extent of my terror: that I regarded my car as a killing machine and had to brace myself whenever I climbed into it, or that I dreaded being responsible for a fatal accident.
Around the same time, I developed an inexplicable fear of steps and stairs. Winding ones, crumbling ones, short ones your feet overhung. They existed solely for me to break my neck. I could ascend them — no problem; going down was another matter. Perilous as a rope-bridge, they swayed before me, as I clung to the rail and made my tentative descent.
As soon as I walk out of the door I feel exposed
There should be no shame attached to Alzheimer’s, believes Valerie