utilities

Living with posterior cortical atrophy

Valerie Blumenthal

This is a cross-post with The Huffington Post.

Author Valerie Blumenthal was diagnosed with 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.

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8 Responses to Living with posterior cortical atrophy

  1. Valerie Bet 27 December 2016 at 1:06 am #

    My husband was recently diagnosed with PCA. I’m scouring the internet trying to find all the information I can find. I pray for any information on this form of dementia.

  2. Dave 28 September 2017 at 1:36 am #

    Valerie, would appreciate if you take emails, my wife has recently been diagnosed with PCA and she’s looking for connection to navigate this journey, she’s strong and a fighter, we’re doing all we can for her here in the states. We figure we’re better connecting with others to share ideas and encouragement.

    • Jenny Heinen 31 December 2017 at 11:40 am #

      Dave and Valerie, my mother was just diagnosed with PCA. I would love to chat about your experiences. It is such an overwhelming diagnosis and it would be great to chat with someone I’m the same situation. I’m also in the states Dave and it seems like there is little support here. I’ve never looked for help this way so how do I go about getting you my contact info if you are interested?

      Sending positive thoughts, Jenny

  3. Betty-Ann Blackwell 30 April 2018 at 11:34 pm #

    Any suggestions for non visual processing recreational activities for an 86 year old woman (my mother) with advanced PCA who now resides in Assisted Living in Canada? Apart from music and going for walks. The staff are stymied.

    • ARUK Blog Editor
      ARUK Blog Editor 1 May 2018 at 7:40 am #

      Hi Betty, thanks for getting in touch. As a biomedical research charity, we raise money to fund research into the causes, diagnosis, treatment and prevention of dementia. We are unfortunately unable to provide recommendations on care. There is another charity called Alzheimer’s Society. Their focus is very much on the care of people with dementia, providing information and services including respite care and support. I would recommend that you contact them on (UK) 0300 222 1122 or email enquiries@alzheimers.org.uk. Hope this helps.

      • Betty-Ann and Blackwell 23 May 2018 at 12:20 am #

        Thanks for your reply. We’ve connected with the Alzheimer’s Society here in Ontario, Canada. It seems everyone is focused on the medical side of things, including signs and symptoms and impact on function. But no one can really suggest recreational activities. I go hallway walking with my mom and her cronies once weekly. We continue to volunteer at our local hospital, doing the library cart. Mom can no longer ‘see’ the titles of magazines to hand out, but she still enjoys chatting with patients, although word-finding is becoming increasingly problematic.

        She enjoys listening to music and dancing, although balance is an issue. It seems that any strategies we try to help her compensate for the dominant visual processing deficits most often rely on other cognitive capacities, such as memory, which now too is failing.

        I am meeting with the Activities Coordinator at the retirement residence and hope to come up with some ideas he can incorporate with Mom. Her strengths include: sociable, nurturing (likes to help others), seems to be good with routine.

        And, I’ve discovered some assistive devices that actually work! She now has a phone with 1 inch x 1 inch programmable buttons with photos of family and friends that she presses once to connect. We found a wonderful talking radio that at the press of a raised button gives her the day, date, and time.

        Any other suggestions would be so welcome. Thank you.

  4. Betty-Ann and Blackwell 23 May 2018 at 12:34 am #

    Thanks for your reply. We’ve connected with the Alzheimer’s Society here in Ontario, Canada. It seems everyone is focused on the medical side of things, including signs and symptoms and impact on function. But no one can really suggest recreational activities. I go hallway walking with my mom and her cronies once weekly. We continue to volunteer at our local hospital, doing the library cart. Mom can no longer ‘see’ the titles of magazines to hand out, but she still enjoys chatting with patients, although word-finding is becoming increasingly problematic.

    She enjoys listening to music and dancing, although balance is an issue. It seems that any strategies we try to help her compensate for the dominant visual processing deficits most often rely on other cognitive capacities, such as memory, which now too is failing.

    I am meeting with the Activities Coordinator at the retirement residence and hope to come up with some ideas he can incorporate with Mom. Her strengths include: sociable, nurturing (likes to help others), seems to be good with routine.

    And, I’ve discovered some assistive devices that actually work! She now has a phone with 1 inch x 1 inch programmable buttons with photos of family and friends that she presses once to connect. We found a wonderful talking radio that at the press of a raised button gives her the day, date, and time.

    Any other suggestions would be so welcome. Thank you.

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  1. Don’t mourn, but organise! | Living better with dementia - 29 August 2015

    […] living with dementia from Coatbridge, Scotland. Valerie Blumenthal also has been outstanding in sharing her experiences of what it’s like to live with a relatively rare type of dementia; and has just finished what I am sure is another excellent book. And these are just a few names […]

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