Creative writing with Alzheimer's: Valerie Blumenthal

ffcc5d2e-9e05-4f13-b4f9-7889bf8b87c6

Read one author's moving account of her determination to complete a novel despite being diagnosed with a rare form of Alzheimer's

Read one author's moving account of her determination to complete a novel despite being diagnosed with a rare form of Alzheimer's

‘It’s grim. It’s been a nightmare. Gradually, bit by bit, PCA eats your brain away – the back part of the brain, which is responsible for things visual. It started with driving. It robs you of things. All sorts of things were going wrong, but my cognitive function was entirely fine.
‘Fortunately, I’ve got a very big vocabulary, and I can bluff. My doctor said I was fine, just stressed. I didn’t take the medication and I went on bluffing for three years. PCA takes your motor skills, so I fumbled my way around the computer.
'And yet, apparently, I was fine. But I was suddenly unable to do things. I couldn’t do my granddaughter’s Lego. It gives you complete dyslexia. And dyspraxia. And dyscalculia.
‘You get used to it. I used to play Chopin and suddenly I couldn’t read music any more. I couldn’t tell the time. I can’t paint, or not in the way I used to – now I paint in a more impressionistic style.
‘I can’t write – I’ve become totally dyslexic. I’ve had 8 books published – the last one, Saturday’s Child, sold over a million copies. And then for about ten years, I was busy, teaching creative writing and EFL, so I wrote short stories. Then eight years ago, I had the idea for this book, The Lupo Stick, and I knew I wanted to do it. My mother, who had Parkinson's and dementia, was very sick, and I thought, I had to have the daughter telling the mother’s story. And I thought, the book is full of secrets – let’s have the mother having Alzheimer’s so it’s a race against time.
‘At that point I was OK. I started writing. I was never a fast typist, but I was already slowing down on the computer. And then it got harder and harder and harder – hence the book took eight years to write. At the beginning I could find where the letters were – I was just slow. And then I started to lose sentences, and the letters would be witches dancing in front of me. Leaping in front of me. But I was determined to go on writing.
‘The plot, the details, the storyline, were all fine – that’s the frontal lobes, and PCA involves the back of the brain. The story was coming out of my head. So I’d be steaming ahead, the words were rattling around inside me, and my hands were going slower and slower and I couldn’t find the wretched words on the keyboard. If I could do four lines a day, that was a good day.
‘Spelling went as well. It was a true labour of love – and hate. I was at the end of my tether – I’d be in tears. The last year of writing it became even harder and I knew if I didn’t get the words down quickly, it would go.
‘I was finally diagnosed after I went to the optician. I said, I think it’s my brain, I think the messages aren’t getting through. He wrote to my GP. So it was diagnosed, and I had my brain scan, and it showed severe deterioration. It was such a relief, because I could stop pretending, and enlist help. I’m fully aware there’s worse – I’m lucky in so many ways. I sing. I’ve got my dog. I compose on the piano, just by ear. You never hear the same thing twice.
‘Because The Lupo Stick was so personal, I wanted to do everything, including the drawing on the front cover. It is the book I wanted it to be, and I’ve had fantastic comments from people. I’m proud I finished it. I’m as proud of that as anything. It’s the last book I will do, and it’s done now. I feel relief, really.
‘To any writer struggling with Alzheimer’s, I’d say persevere. The longer you persevere, the longer you can persevere. I now do bits of poetry, I love writing poetry, and I do it with voice recognition. I can write little things – features for newspapers. Do I miss writing? I do and I don’t. It’s sad that it’s the last one, but I think my first one, and my last one, are the best I’ve done.’

PCA, which is the form of Alzheimer's that affected Terry Pratchett, is caused by damage to the brain cells at the back of the brain that make sense of what our eyes are seeing.
Alzheimer’s disease is most often the cause of the brain cell damage in PCA. PCA is sometimes called a visual form of Alzheimer’s. However, the early signs of PCA and typical Alzheimer’s can be very different. Alzheimer’s disease usually affects memory first. In PCA the first signs are often problems with vision and perception.
People often develop PCA at an earlier age than typical Alzheimer’s disease, usually between the ages of 50 and 65. PCA is a less common form of dementia, and at the moment we can’t be sure how many people around the world are affected by it.

Valerie is a Champion of Alzheimer’s Research UK, which is one of the UK’s leading dementia charities. It funds research projects across the UK with a goal of finding the first life-changing treatment for dementia by 2025, and its mission is to defeat dementia. Valerie has done a lot of work for Alzheimer’s Research UK over the years and has worked hard to raise awareness of her condition and also people with dementia more generally. You can buy The Lupo Stick here.

 

 

 

Find more inspirational first-person writing stories every month in the Subscriber Spotlight pages of Writing Magazine.