Am now three quarters of the way through writing my new novel, THE LUPO STICK. Not something to bleat about normally. But when you have PCA Alzheimer’s and every word, every letter you write is mental agony and a test of endurance… I feel slightly justified. For ten hours a day I tap at the keyboard, one letter at a time, in order to write about someone who does not exits, except in my head. A strange pursuit for anyone, let alone someone in my detairorating state. Oh Brain Gremlins, you shall not beat me.
Where do I look?
What is real?
What is not real, that I see and don’t see?
My daily adventure.
And I used to like play backgammon. Just setting up the board was part of the pleasure for me. You assume a sort of casual nonchalance as you toss the “men” – onto the board and slide them into their positions. The expertise with which you execute this preliminary little ritual will indicate to your opponent the degree of your confidence as a player. My opponent was usually my daughter or my husband.
You could still win, my daughter would say – as her lips quivered into a nasty smile and she took two of my men simultaneously , before blocking me from moving. Even when she was a child I never stood a chance. My husband was another matter. I took my vengeance out on him, poor man, beating him every time. time. Until this, too, changed. He won three games in a row one evening, and then again the next evening .
I’m getting the knack of this, he gloated.
But when the euphoria of winning had waned he soon he became impatient: What are you doing, he demanded ,when I pick up his white piece instead of my black, or captured one of his men in error because I had miscounted. And as I dithered over my next move he would glance at his watch in an unsubtle attempt to hurry me. But I could not hurry. The jazzy, pattern of the crowded board merged into a homogenous blur, and it It was as though I my brain seemed unable to register what had once been almost automatic to me.
You’re tired, that’s all, my husband, the kindest man on the planet, tried to mollify me when I became tearful.
But his sweetness failed to console me. We stopped playing backgammon. Scrabble met with the same fate.
What was happening to me? I could see so coronation between the strange, disparate, symptoms I was experiencing. had to visit my GP for something unrelated, I thought
Around the same time, I developed an inexplicable fear of steps and stairs. Winding ones, glass ones, sloping ones, crumbling ones, short ones your feet overhung…I could ascend them with comparative ease, but descending was another matter. As they swayed before me I morphed into a scared old woman, clinging on to the railings for dear life. The stairs existed solely for me to break my neck. And as for escalators: I confronted these with horror. I could not get the timing right and lurched onto them, getting my feet sandwiched between the treads. Nowadays, when there is no option other to use the wretched contraption, I enlist help; but prior to my diagnose it was important to me to face my fears. I used frequently to travel to London and brave the Marylebone station escalator, waiting for a gap between the endless hoards streaming past me. Who would have guessed at my hammering heart? It became ever more difficult, but I continued to bluff. I could confide in nobody. Since diagnosis the stress has been much reduced. My very supportive husband is no longer impatient when I fail to see what is right in front of me, and shepherds me in unfamiliar places, as I lose my bearings. I can, to some extent, capitulate to the illness; that said, there are moments when I let myself down. The following happened not long ago: We were at a at a Michelin-starred restaurant for my husband’s birthday. Everything was perfect – the food, service, ambience… Without a qualm, I walked up the three, wide, tartan-clad stairs to pay; then turned to descend. The short run of stairs took on the proportions of Kilimanjaro. With a fixed smile, I placed one foot in front of another; and fell. My landing was soft, but was small consolation, as I lay, sprawled there. It must have appeared comical to the dozen onlookers, and I played-up to that. Laughed as I stood, an up, and offered an encore. It was not the time or place to expound on the curious affliction that is PCA. Other incident: It was about three years ago, shortly before my mother died. In an effort to engage her, I offered to read to her from a novel of my own. It was her favourite of my books, and a I noticed a spark of interest come into her eyes. Sitting close, I began to read aloud. Stumbled. Stopped. Started again. The same thing happened. I could not comprehend it; I had always been such a fluent reader. I continued for a few sentences, from memory and adlibbed, but had to abandon the idea. My mother had fallen asleep anyway, and I put the book, which had once meant so much to us both, back on its shelf. A week later I needed to write out a cheque. Like most people, generally pay by card or cash. As I attempted to fill it in, I couldn’t keep to the lines, and there seemed to be insufficient space. It took three attempt. I also had to complete a a form; and the same thing happened; I could not keep to the boxes and had to start afresh. Finally, in barely legible writing, I succeeded. I felt foolish and inadequate. And something else besides: I felt the prickling of concern. The months progressed. My husband commented I hardly read any more. I made some excuse. He did not know that reading had ceased to be enjoyable for me and had become a strain. I did not tell him that the letters and words danced in front of my eyes and I would lose my place or read the wrong line. However, ‘old habits’ and all that: I went on buying books. Unread, they taunt me with their pristine promise. More time passing. Newspapers were the next thing. If I read an entire article it was an accomplishment. Fancy fonts confused me, and finding my way round the columns was akin to searching for the exit in a maze. Then I discovered that I could no longer play the piano. It seemed to have gone from me overnight. In fact there had been an interlude of a few years, but I assumed that, like riding a bike, it was something I would always retain. Full of anticipation I positioned the Mozart sonata on the piano, and leant forward to remind myself lf the opening chords. Crotchets and quavers danced before my eyes, meaningless. I was unable to read a note.
I AM STILL ME. Living with PCA Alzheimer’s .By Valerie Blumenthal.
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, 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 a 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 whom 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 important to be honest, so, reluctantly, I must admit to being a youthful sixty 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 o 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 curb, or, worse ,the wing mirror of an on-coming 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 passing. 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 zigzagging tyre imprints on the lawn. ln order to park, I would drive my small hatch-back round and round, searching for a space big enough for a stretched-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 diagnoses 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 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 onto the wrong line. And where has the letter “H” gone to when I need it?