Author Valerie Blumenthal on living with PCA Alzheimer’s
Once there was a free spirit who was me. That me was a reasonably successful novelist. She was fiercely independent, rode her horse without a hat to feel the wind tear her hair, and drove to remote corners of Britain; getting lost was an adventure. Crowds did not bother her, she ran down steps without a second thought, sketched horses and played the piano.
That was before PCA crept up on me; amorphous, insidious.
PCA stands for Posterior cortical atrophy. An unusual form of Alzheimer’s, it attacks the back part of the brain, responsible for visual function, orientation and spatial awareness, rather than the front, which affects cognitive function.
Trust me to have something weird, which hardly anyone has heard of — and that includes many doctors. I am in good company: another author, better known than myself, is a fellow sufferer.
I had never really considered my brain much; that gory slab, privy to my innermost thoughts. Myself and it are supposedly one and the same, yet currently my brain is out to thwart me.
But if my brain is what rules me, if it makes me who I am, then, in fact, I rule it. I rule it. Am I in charge, therefore?
Normally I lie through my teeth about my age, but in this instance it is important to be honest, so, reluctantly, I must admit to being a youthful 60-something. I am a mother, grandmother, wife. I have a large dog and small cat. I love and am loved.
It is difficult to be specific, but I believe I experienced the first symptoms of PCA at least five years ago. Driving, which had always been a pleasure, increasingly was becoming a thing to dread. I could see perfectly well, my driving glasses were the correct prescription, yet I had I problems judging distances and where to position my car in relation to the road, also where to pitch my line of vision.
Road signs leapt out at me, filling me with panic. Busy junctions were my idea of hell. It was disconcerting, to say the least. I would arrive at my destination a wreck. I was always clipping the kerb or, worse, the wing mirror of an oncoming car.
“You again! What’s the excuse this time?” the garage guy commented, with a snide grin. I muttered something about not biting the hand that fed him, but he didn’t know what I was talking about and my quip fell flat.
Time passed. Matters grew worse, along with my driving. I used landmarks, counting them as I passed them unscathed. I removed the radio so I would not be distracted, and talked aloud to myself: concentrate… you love driving, it equals freedom… this is all in your head.
I promised my husband I would take a driving course — then chickened out, fearing I would be told I shouldn’t be on the road. Maybe this phase would pass? It didn’t. Reversing down our own driveway became a hit and miss exercise that left zig-zagging tyre imprints on the lawn.
ln order to park, I would drive my small hatchback round and round, searching for a space big enough for a stretch-limo. Then there was the day I was about to park in an empty space; except it wasn’t empty. The vacant slot was next to it. For several minutes I felt sick.
Over the last two years that I drove — until the diagnosis of my illness — I rarely had a passenger, other than my German Shepherd, and even he made it clear he didn’t like my driving and had to be coaxed into the car.
Friends and family knew about my nervousness, but nobody knew the full extent: that I regarded my car as a killing machine and had to brace myself every time I climbed into it. Or that I dreaded being responsible for a fatal accident.
And I am typing this with painful slowness as the letters dance before me, and elude me. I have to correct every other word and frequently go on to the wrong line. And where has the letter “H” gone to when I need it?
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