Jaine Blackman meets a woman who wants to raise awareness of a rare condition

For years novelist Valerie Blumenthal felt she was losing her mind, so to have it confirmed was actually something of a relief.

While no one wants to be told they have an unusual form of Alzheimer’s, it helped her make sense of the symptoms she had been struggling with for a long time.

“It is difficult to be specific, but I believe I began to experience the first symptoms at least six years ago,” says Valerie, who lives with husband Chris Yeates in Moreton, near Thame.

“The diagnosis was a relief. It wasn’t a shock, I knew there was something wrong.”

Until then Valerie had been trying to cope with an array of bewildering changes: a musician since a child, she suddenly couldn’t read music; her driving deteriorated dramatically; reading became increasingly difficult and stairs a nightmare.

Without having a reason for the strange behaviours, Valerie tried to fight down her panic and made excuses when she took four attempts to sign a cheque correctly, fumbled with her change, had problems laying the table, froze at the top of a flight of stairs or took her car into the garage for yet another prang to be repaired.

“I couldn’t explain it. It was very, very odd. I’d say ‘I’m dyslexic’, ‘It’s my eyesight’, I would blame anything. I was bluffing to everyone... you get so tired of it.”

She’d been to her GP but was told she may be suffering from stress or depression.

In fact it was posterior cortical atrophy (PCA).

“Put simply, it is an unusual form of Alzheimer’s that attacks the back part of the brain, responsible for visual function, rather than the front, which affects conative function,” says Valerie, who has published eight novels, including the best-selling Saturday’s Child.

“I can see everything but it’s not assimilating. Trust me to have something weird, which hardly anyone has heard of, and that includes many doctors.”

She is telling her story to spread awareness of the condition, in the hope no one else has to wait as long as herself for diagnosis. “I want this on the map so GPs know about it,” she says.

Valerie finally discovered what was wrong after a visit to the optician about nine months ago confirmed that it wasn’t her eyesight at fault. He wrote a letter to her doctor, who referred her to a neurologist and she then saw a clinical psychologist.

A brain scan discovered that her frontal lobes were “youngish” but the rear ones had “disintegrated considerably”.

She’s now taking pills that can stabilise and slow down normal Alzheimer’s and she says although it will eventually spread to the front of her brain, the progress is relatively slow.

“I think it could be a decade, which is a more respectable age to get it,” says Valerie, who hasn’t lost her sense of humour.

She admits to being sixty-something but could easily pass for being a decade or more younger.

“I think the worst thing about this is exposing my age to everyone. Normally I lie outrageously about my age, and get away with it, which – call me vain – does me a power of good,” says Valerie. But she feels she should let people know PCA doesn’t just affect those in their 70s and older.

It is for husband Chris and her writer daughter Ingrid Stone, who lives in London, she worries for the future.

“I won’t know about it but it would be awful for them,” she says, before quipping that she has instructed Chris to put on her lippy for her “if it gets bad”.

She remains optimistic and despite the PCA affecting her writing (“I have to correct every other word and frequently go on to the wrong line”) is continuing to work on her latest book, The Lupo Stick, set in Sicily and Oxford and, coincidentally, featuring a character with Alzheimer’s.

Now she can explain to people what is wrong, she feels less embarrassed to ask for and accept help.

“Since diagnosis, I can, with justification, capitulate to a certain degree to my illness,” she says. “I am not sure if this is a good or bad thing, but certainly much of the stress has been removed.

“And of course it helps that I have a supportive husband on whom I can lean – literally as well as metaphorically.”

PCA usually affects people at an earlier age than typical cases of Alzheimer's disease, with initial symptoms often experienced in people in their mid-fifties or early sixties. This was the case with writer Terry Pratchett, who went public in 2007 about being diagnosed with PCA.

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