Living with posterior cortical atrophy
Author Valerie Blumenthal was diagnosed with Posterior cortical atrophy (PCA), a rare form of Alzheimer’s disease, last year. Today she will join a panel at the Women of the World Festival as Alzheimer’s Research UK launches a report highlighting the particular impact dementia has on women. Here, Valerie shares her story.
The first symptom for me was driving. I always loved driving; liked to explore far corners of Britain, and getting lost was an adventure. But increasingly I realised I was liking it less and less, and I was really fearful. I didn’t know where to position my eyes in relation to the road, the signs leapt out at me, zigzagging all around me, so that I became confused. Driving became a thing to dread. I was forever clipping the curb, or, worse, the wing mirrors of oncoming cars.
Then I began to find steps difficult. Going up was fine, but going down, they took on the proportions of Everest. Even wide, carpeted stairs were difficult because I didn’t know where to put my feet. Escalators were a nightmare. I used to joke that I needed another pair of glasses, but knew that was not true. Bluffing became part of my life, and it was very tiring. I started to feel utterly inadequate, as other symptoms reared their spiteful head. Brain gremlins, I now call them.
My husband commented that I hardly read anymore. I made some excuse. I did not tell him the real reason: that the words and letters danced around on the page, like fleas. One day I tried to read to my mother, who had Parkinson’s coupled with dementia. The book was one of my own novels, her favourite; however, I found myself unable to read aloud and kept stopping and starting, and losing my place. Baffled, I was forced to abandon the exercise.
Writing out cheques and filling out forms were similarly hard for me – especially if anyone was watching me, in which case it became downright embarrassing. More excuses needed!
The bluffing continued. Months drifted into years. Daily life was affecting me. I mislaid things, failing to see them, even though they might be in front of my nose. It was as though my eyes bypassed the objects. And then I found I could no longer play the piano, or read the music. I had been a reasonable pianist. The computer, too was becoming a problem, as I started to fumble for letters and the keys jiggled about. And I used to love to sketch horses and people; but this ability also seemed to be ebbing from me.
It was time to pay a visit to my GP. I related my symptoms to him and told him I believed that, like my mother, I had some form of dementia.
He disagreed: ‘I think you are suffering from anxiety,’ he said.
I quipped that I was born with anxiety.
He didn’t smile. He offered me a prescription for sedatives.
I declined them, and returned home, despondent. I kept up the pretence for another two or three years, each day becoming harder than its predecessor, whether it was using the telephone, helping my five-year-old granddaughter with her Lego, or shopping at the supermarket. I became confused when paying with cash, and dithered, not helped by the sighing customers queueing behind me. Then there was the time I buttered my plate instead of my bread. And on the train I tried to sit where there was no seat… These were everyday occurrences for me.
The final straw came when a friend asked me to lay the table and I was unable to do this simple task in the right order.
I made an appointment with the optician for a macular degeneration test; though I knew there was nothing wrong with my eyes. He confirmed this, and agreed that it seemed likely my symptoms were brain-related. Armed with his letter, I went back to the GP, who, with considerable reluctance, referred me to a neurologist. Cognitive tests, followed by a brain scan, revealed I had PCA, a form of Alzheimer’s that attacks the back of the brain, responsible for visual function.
When I received this diagnosis it was no shock. My overwhelming emotion was relief that now I had an explanation for all these strange things that had taken me over. I could stop pretending. I did, also, experience a twinge of fear, but tried to put it into perspective.
As for now: I am desperately trying to complete my new novel, but crawl my way round the maze of my computer and fear I may not. But I am fortunate in so many ways. I have family and friends. While I can no longer draw beautiful horses, I can paint abstracts. I can’t read music any more, but I can extemporise on the piano and see where it takes me. And I can sing. And I can offer encouragement to people in a similar situation to myself. I would not feel confident about traveling abroad now, as I get disoriented. I disliked crowded places, and I totter a bit in unfamiliar streets. But nothing could give me more pleasure than walking with my German Shepherd in the countryside where I live.
I dare say that many more people have PCA without realising, who just muddle through and don’t know what’s wrong with them, and bluff, as I did, misdiagnosed and disbelieved. So now, though I never thought of myself as a campaigner, I’m trying to raise awareness of this strange and, sometimes interesting (viewed objectively), disease that is PCA Alzheimer’s, and which many doctors haven’t heard of.
And meanwhile – I am still me.
This is a cross-post with The Huffington Post.