Ahead of the very first Charles Bonnet Syndrome awareness day on Thursday (Nov 16) Jacqui Morley explores the vivid hallucinations that define the syndrome for the visually impaired.
Carol Bellard-Thomson, 70, is thinking of naming her unusual house ‘guest’ the Dithering Lizard.
About the size of an iguana, the lizard lingers on the bedside cabinet at her St Annes apartment, all of a-dither, pearlescent scales shimmering, there when she wakes.
Carol’s hand would pass right through it if she reached out – as she has. The fantastic creature, which has no eyes, does not exist.
Nor does the small wall Carol sees floating mid-air wherever she is. “The pointing’s beautiful,” she adds.
Carol is not – as one friend feared others might think when told of the hallucinations – “bonkers”.
She is visually impaired – not cognitively impaired. She has macular degenertion. “I refuse to call it age related,” she laughs.
Carol has Charles Bonnet Syndrome. It’s named after the Swiss philosopher who first made the link between visual impairment and the vivid silent hallucinations – people, carriages, other things – his 89 year old grandfather, sound of mind, reported.
There was no underlying cognitive cause – dementia, delirium, drug induced, psychosis – just visual impairment.
More than 250 years on, Thursday marks the very first Charles Bonnet Awareness Day – in spite of the fact that up to a third of people with low vision (and up to 40 per cent of those over 65 with low vision) could develop it.
They have usually lost 60 per cent or more of their sight, mostly through macular degeneration, retinitis pigmentosa, glaucoma, stroke, accident or eye disease.
Their hallucinations are sharp and clear no matter how blurred, hazy or partial their remaining vision.
They are also silent. If other senses are involved – hearing, touching, smelling, tasting – it’s not Charles Bonnet Syndrome.
It goes unreported because of the perceived stigma and is missed or misdiagnosed because of the lack of awareness.
Charles Bonnet day can’t come soon enough for those who suffer in silence for fear of the cause, or what friends and loved ones would say, or risk of misdiagnosis as cognitive impairment by medics unfamiliar with the cause.
The awareness day is organised by Judith Potts who set up Esme’s Umbrella, a national campaign group, after her late mum Esme, a former nurse, in her 90s – utterly sound of mind and still doing the toughest crosswords daily – struggled to cope with visual yet silent and often horrific hallucinations which were making her life a misery 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 their shoulders.’ She and I were the only people in the room.”
Judith feared the worst – dementia. By chance that very day in the press she read a small article about Charles Bonnet Syndrome. “It was as if mum had written it.”
Thanks to her efforts more ophthalmologists alert patients to the possibility of CBS – and more medics recognise the syndrome too.
There is no known cure as yet, but options are being explored.
Locally, N-Vision Blackpool Fylde and Wyre Society for the Blind, established in 1910, has known of the syndrome for many years – and encourages members and clients to discuss it.
The charity’s chiefs recently attended a national conference which spotlighted CBS – and met Judith Potts.
“People are finally taking note,” says Judith Harrison, N-Vision community services manager. “And not before time. Knowing what is happening is half the battle. We find reassurance works wonders and just talking about the hallucinations and giving people the opportunity to explain what they are seeing helps. Knowing they are a regular part of sight loss eases people’s minds.”
N-Vision has booklets available on the syndrome at the charity’s Low Vision Centre at Bosworth Place, Squires Gate, and at the busy eye clinic of Blackpool Victoria Hospital.
The charity’s eye clinic liaison officer Linda Sethi plays a crucial role in awareness raising too.
“It tends to come up when clients have learned to trust you a little more. It sets their minds at ease to know they are not alone – and to know the cause too.”
Two elderly ladies with macular degeneration who met and have become firm friends at the monthly sight loss support groups discovered they had the syndrome in common.
One lady confided she saw shadowy figures lurking in her home. The other responded that she was ‘chased round the garden by a bush’. “It’s nice to know we’re not losing our marbles” says one.
One local man has told leading local optometrist Ceri Smith-Jaynes of Cottam and Glaister, St Annes, who’s also clinical editor of Optometry Today, that he sees a cliff face in front of him. Another sees children dart out in front of cars and urges the driver to stop.
Ceri adds: “I always make a point of asking whether they have seen anything out of the usual –something they can’t explain. Few are likely to just come out and say I’m seeing things that I don’t think are there.
“The hallucinations are always silent so if you hear or smell or taste something as well as see it it’s not Charles Bonnet Syndrome.
‘’Charles Bonnet Day is really significant because it’s trying to raise awareness.
“A lot of GPs and health professionals still don’t know about it – and it needs to be borne in mind if a patient who is visually impaired mentions hallucinations.”
The charity has already hosted a presentation on Charles Bonnet Syndrome by Dr Sheila Kelleher, associate specialist in the ophthalmic department based at the Vic.
Dr Kelleher says even mild impairment of central visual function can spark the syndrome. “It’s sometimes referred to as ‘phantom vision’ syndrome – 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.
“Most likely this is Charles Bonnet Syndrome and not signs of one losing one’s mind!
“As many doctors and health care professionals are NOT aware of the condition anything to highlight Charles Bonnet syndrome can only be a great thing.”
As for Carol? She reckons she gets off lightly with her lizard and wall. Some see armies marching through rooms, walls dripping with water, grotesque disembodied faces with no eyes, gargoyle-like features.
“Mine are startling but not frightening.”
Carol attends the sight loss support group and her local N-Vision run café club. “The charity has been very helpful in terms of support and in helping me appreciate I’m not alone.”
Carol’s no slouch academically. She took her first degree at 34 and completed it a year ahead of time – tired of the ‘dull life’ of the civil service. Fluent in French and more than competent in other languages she specialised in linguistics and loves the structure of words and language.
The former university teacher was diagnosed with macular degeneration in her 60s and did what she always did – researched her subject.
“I think I saw Charles Bonnet Syndrome coming.”
Her own health broke after her late husband had a brain-stem stroke. “Looking back I thought I could do it all – I learned, the hard way, that I couldn’t.”
A diagnosis of ME was later outpaced by heart failure. Carol lost her central vision to macular degeneration dry and wet. The books she cherished (Rabelais, early Asimov) are seldom found in audio form and exhausting to read with magnifiers or via large font/type sizes. “I’m down to two and a half book cases,” she admits. “In my old cottage, they lined virtually all the walls.”
Carol (as pictured above) uccessfully trialled new eSight glasses at N-Vision this year – the charity having been at the fore of European trials through Low Vision Worker Brian Casey – but the £10k asking price is beyond her or Santa’s reach.
The glasses replicate rather than restore sight bypassing damage and utilising remaining (peripheral) vision to project images in real time.
They would not only help Carol ‘see’ and read again – but perhaps offer respite from the hallucinations.
An accomplished poet, she’s penned several poems on the eccentricities of sight loss – including That wall. Here’s an excerpt:
“It has small red bricks and the mortar is cream. It is always there. It is not a dream. But it can’t be true, so I cannot fall and I step right through. I walk through a wall.”
· Up to a third of patients with low vision develop CBS including those with age related macular degeneration, cataracts, diabetic retinopathy, peripheral visual field loss due to glaucoma, field loss due to strokes
· Among older adults – 65 plus – with significant vision loss the rate of reported CBS is between 10 per cent to 40 per cent
· Hallucinations are more likely to occur when the person is awake, alone and in dim light, drowsy or lacks distractions
· Hallucinations are sharp and clear and silent no matter how blurred, hazy or partial the remaining vision.
· There’s a national helpline 0345 051 3926 and www.charlesbonnetsyndrome.uk features information which can be taken to the GP or health professional. Locally, call the Low Vision Centre at N-Vision, the Blackpool Fylde and Wyre Society for the Blind (01253 362696) or local optometrists. It may help to mention the syndrome to your GP too. Or contact the specialist eye charity in your locality.