A personal account of living with PCA Alzheimer’s.
By Valerie Blumenthal.
Where should I look?
Where should I place my feet?
What is real?
What is not…
That I see but do not see?
My daily adventure.
I am not sure how to begin this. I could begin with myself, now; or I could begin with myself, then. I could begin with an anecdote, or a salient fact; but no, I think, perhaps I shall begin with an abiding memory.
A woman is on a large chestnut horse, galloping across a series of fields. She is not wearing a hard hat, and the wind tears at her hair. The rhythmical drumming of the horse’s hooves fills her ears. Apart from the wind it is all she can hear, and as she leans into the horse’s sleek body she is laughing from pure exhilaration.
We had each other for twenty-two years. My beautiful chestnut horse was buried in a friend’s orchard, more than a decade ago. As one would expect, much has happened in the interim; but writing this, I am propelled back, into a thicket of memories, and time has concertinaed, fuelled by nostalgia.
I dream of my horse sometimes. I dream that I am that free spirit again, un-curtailed by the confines of PCA Alzheimer’s.
PCA, or Posterior Cortical Atrophy, to use its full name, is when the back part of the brain has withered. It is this ‘zone’ which is responsible for vision and motor skills, and is considered to be rare, though I have my doubts. I believe it is misdiagnosed or un-diagnosed; not surprising, considering the weird raft of apparently disparate symptoms.
If I had to describe what it is like to have PCA, I think I would have to liken it to suffering from very severe dyslexia, coupled with dyspraxia, and dyscalculia. With the passage of time these become ever more extreme and daily life, ever more of a challenge. It is the same form of Alzheimer’s which afflicted Terry Pratchett, and it creeps up on you with the stealth of a thief. Generally it kidnaps you in your fifties or sixties, when you should still feel at your peek.
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 quashes the free spirit in you. As the disease progresses, so, increasingly, it chips away at your confidence, and deprives you of your of independence. The second you step out through the front door, particularly when going somewhere unfamiliar, you feel vulnerable, exposed, and the tension rises in you. Relinquishing your independence is a hard thing to do, for a once-upon-a-time Free Spirit. Inside you, you sometimes want to yell out that you are too young for this. But finally I have capitulated to the comforting reassurance of my husband’s arm, and allow him to shepherd me, across the road, and to navigate the pavement’s hazardous straits.
PCA is, to say the least, inconvenient. It can also be downright embarrassing, and a good sense of humour is essential. Imagine the following: You go to sit where there is no seat and finish up, sprawled on the floor, legs flailing in the air. Or you go to the post office, where a snaking queue is causing tempers to fray; you make a beeline for the front, prompting mass fury. Or you go into a neighbour’s quilt-sized garden, become disorientated, and cannot find your way out. It is as if you have been spun round and round.
I was eventually diagnosed nearly three years ago, but looking back, I believe that the first signs of the brain gremlins invading my life was at least four years prior to that; small things one could easily dismiss or explain away. And now something else comes back to me. My mother was still alive then; she had Parkinson’s, coupled with dementia, and she had good and bad days. On a bad day she thought my brother was my late father, and insisted that her mother, who would have been a hundred and fifty, was coming for tea. At other times she could be almost her old self, lucid, wise, even witty. This was one such day. The weather was fine, and I managed to get her to walk round the garden, with her frame. She focused determinedly on the ground, head bent in concentration.
Our passage was slow, with several stops. During one of them she turned to me with softness in her still beautiful eyes. Taking my hand in hers, she told me that she was not afraid of dying, that she believed in an afterlife, and I should not be sad when she went. It was a moment of unique closeness, and I can hear her voice and am so grateful for those words.
We resumed walking. Her shaky legs were thin as knitting needles, and two circuits of the garden were sufficient for her. We went back indoors, and I settled her in her chair. She was perhaps a little tired, but that was all; she wasn’t confused, and her speech was lucid. She even enquired about the new novel I was writing, and expressed interest when I told her it was set in Sicily. I walked across the room to put a CD on the player; I was aware of my mother staring at me in a strange way, as though she were assessing me. I returned to her side. The overture from Mozart’s Marriage of Figaro rang out. My mother continued to look at me, now with concern in her expression.
I hope you aren’t getting the same illness as I have, she said.
I was taken aback. I cannot recall how I responded. What prompted her to make this extraordinary utterance? What had I said or done? What had she seen in me then?
How prescient her remark proved to be. No, I don’t have what she had; however, the similarities between the diseases are enough to have made it plausible. Indeed, as time passed and the gremlins plotted what trick to play next, it was what I myself suspected.
My mother died several years ago, but lately, as I become conscious of changes in my condition, I feel more and more, close to her. Sometimes it is almost as though we were each other and her strength has gone into me. I would like her strength.