Carol Bellard-Thomson, newly 70, is thinking of naming her ‘pet’ lizard.
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It lingers on her bedside cabinet at her St Annes apartment, all of a-dither, scales shimmering, pearlescent, there when she wakes.
Quite a sizeable beastie too, about the size of an iguana. Carol’s hand would pass through the lizard if she tried to touch it.
The lizard does not exist. Nor does the small but perfectly proportioned wall Carol sees floating mid-air no matter where she stands, sits, or walks.
“The pointing’s beautiful,” she notes.
The wall is a permanent feature of her waking hours. She tells me it’s just to the right of me. I find myself turning to try to glimpse this portal into Carol’s mind’s eye.
Carol is not – as one friend feared others might think when told of the dithering lizard and floating wall – ‘bonkers’.
She has Charles Bonnet Syndrome, named after a Swiss philosopher who, in 1760, documented hallucinations experienced by his 89-year-old grandfather.
Sound of mind but with little sight left he ‘saw’ men, women, birds, carriages, buildings and tapestries.
Given the lack of other cause – dementia, delirium, drug induced psychosis – Bonnet established the link to vision loss and the over compensating brain.
The theory has stood the test of time.
Yet 257 years on many worry themselves sick at ‘seeing things’ – and many medics remain unfamiliar with the syndrome.
Misdiagnosis is common – particularly in the elderly, when it may be easier, if not accurate – to attribute the cause to dementia.
Many would look askance if you told them you saw walls, or lizards, or flashes and patterns, where they didn’t exist.
Add people in period costume, gargoyles, phantasms, lost children and dogs, armies marching through the room or walls running with water and if they’re not armed with a pocket guide to Charles Bonnet Syndrome you could be between a rock and a hard place.
For the record, one local man experiences just that – he sees a cliff face that isn’t there.
An elderly lady no longer enjoys sitting in her garden since a shrub upped roots and chased her round it.
The syndrome mostly affects those who have lost 60 per cent or more of their sight, mostly through macular degeneration, retinitis pigmentosa, glaucoma, accident or one of the less common eye diseases.
Hallucinations are sharp and clear no matter how blurred, hazy or partial the remaining vision.
They are also silent. If any other senses are involved – hearing, touching, smelling or tasting – it is not Charles Bonnet Syndrome.
It can be distressing, disturbing and demoralising.
Carol hopes nothing more startling comes along. “Once you know what’s happening – and I had a fair idea – you can adjust to it,” she adds.
Today is the very first Charles Bonnet Syndrome Awareness Day and it hasn’t come a moment too soon for those who suffer in silence or may have been misdiagnosed – and for loved ones who worry about their mental health.
It’s been organised by Judith Potts who set up national campaign Esme’s Umbrella two years ago. It’s named after her late mum, a former nurse who, in her 90s, sound of mind, struggled to cope with visual yet silent and often horrific hallucinations as her sight faded.
Judith recalls: “One day, as I was leaving her flat, she suddenly said ‘I do wish these people would get off my sofa.
They sit there all day and only go if I tap them on their shoulders.’
“She and I were the only people in the room.”
Judith feared dementia. Then she read a small article about Charles Bonnet Syndrome. Now she’s out to raise awareness.
Thanks to her efforts more ophthalmologists are likely to warn patients about the possibility of CBS developing.
Linda Sethi, eye clinic liaison officer for N-Vision, Blackpool Fylde and Wyre Society for the Blind, reckons at least one CBS case comes through a month.
N-Vision community services manager Judith Harrison, who recently attended a conference on the syndrome, says: “We have found that reassurance works wonders and just talking about the hallucinations and giving the opportunity for people to explain what they are seeing helps.
“Knowing they are a regular part of sight loss eases people’s minds.”
The lack of visual information seems to leave the brain second guessing or drawing on data to join up the dots and deliver – well, that lizard, for starters.
Carol adds: “N-Vision have been very helpful in terms of support and in helping me appreciate I’m not alone.”
Carol tired of the ‘dull life’ of the civil service at 34 and completed a languages degree a year ahead of schedule at Lancaster University back in its History Man heyday, going on to teach at several universities.
Tragically, her late husband had a brain-stem stroke, and Carol’s health ultimately broke too.
“I didn’t know I couldn’t do it all,” she admits.
A diagnosis of ME was outpaced by heart failure. She also slowly but surely lost her central vision to macular degeneration.
Books no longer line the walls of her home. The books she loved – as an academic – aren’t generally found in audio form and would be exhausting to read in large font form.
“I’m down to about two and a half book cases,” she says. “In my old cottage, they lined virtually all the walls.”
Carol, who has yet to part with her beloved Rabelais and early Asimov books, hopes to acquire some eSight glasses which would enable her to ‘see’ in real time again – thanks to images projected past the damaged vision – and read without having to use print so large it disrupts the flow.
They may even give her a welcome break from the lizard and the wall. Carol tried the £10,000 hi-tech ‘glasses’ at N-Vision earlier this year.
“My daughter and I are hoping the price falls,” she says.
l Learn more about the syndrome by calling the national helpline on 0345 051 3926 or visit www.charlesbonnetsyndrome.uk
Locally, call the Low Vision Centre at N-Vision, the Blackpool Fylde and Wyre Society for the Blind (01253) 362696.
Brain is ‘filling in the gaps’
Even mild impairment of central visual function can spark Charles Bonnet Syndrome, says Dr Sheila Kelleher, associate specialist in the ophthalmic department at Blackpool Victoria Hospital.
“CBS is sometimes referred to as ‘phantom vision’ syndrome,” she explains. “It’s similar to the neurological mix-up that occurs in patients with phantom limb syndrome.
“When visual cells in the brain stop getting information the cells compensate. If there’s no data coming in, they ‘make up’ images.
“If you realise that the visual hallucinations are not real then don’t be afraid to discuss it with your eye doctor, optician or GP as most likely this is Charles Bonnet Syndrome and not signs of one losing one’s mind.”
Ceri Smith-Jaynes, optometrist at Cottam and Glaister Optometrists in St Annes and clinical editor at Optometry Today, adds: “What is seen may range from the mundane to the frightening.”