It's one thing for clinicians and the like to describe the Charles Bonnet syndrome experience.  It's quite another for those actually contending with this condition on a daily basis.  

 

This area is devoted to the personal accounts of individuals who are living the Charles Bonnet syndrome experience.  It is also open to the accounts of significant others (eg. carer, spouse, family member, friend) who are affected by a loved one's CBS journey. The Foundation welcomes your stories for the benefit of the CBS community and beyond.

 

Personal experiences of CBS

 

Mr L:     'Everywhere I look I see brickwork.  When I look at my wife, her face is embedded in the bricks.'

 

Mr B:   'I often see big cats like tigers and panthers...sometimes inside the house but also outdoors.  The images used to be scary for me - especially as they would appear out of nowhere- but now I can at least account for them.'

 

Ms W:   'My walls are covered in these purple flowers.  Even when I go outside, the lawns and pathways are a sea of these same purple flowers.'

 

Mr M:     'After lunch, when I sit in the living room, I often see miniature people moving from the right to the left.  They wear strange outfits like the umpa-lumpas from the Willy Wonker Chocolate factory film.  They seem to be busily going about their business.  They never say anything but sometimes they look straight at me which can be a bit scary.'

 

Ms V:      'I initially saw faces, gargoyle type faces, animals, birds, feathers, wings, flowers, plants, grasses, shapes, and grids in a Picasso-like abstract picture. Another way to describe it, is a patterned net curtain hanging over everything I look at, which is more pronounced when I stare at something, ie tv/computer or I am in a room with plain walls. My CBS is a shimmering embossed picture with a grey background, I don't see in colour. It is with me every minute of the day until I fall asleep. After nearly a year the pictures I see are smaller, so there are more of them but they are Lilliputian in size, I see a lot less faces and animals now too, it is much more jumbled/abstract, but it still shimmers and is still in a form of an embossed ghostly picture.'

 

Ms P:       'I have macular degeneration and about 6 months ago, I started to see these super colourful shapes and figures.  Fortunately, I was told about CBS by my eye doctor so I then began to enjoy them. Sometimes I see these climbing vines or plants which are such a rich green. I love seeing the strong colours but sometimes they are really, really colourful like when you put up the colour control on the TV to maximum.'

 

Ms T:       'When I first mentioned my CBS to my doctor, he said I should keep such thoughts to myself.  It didn't help me at all.  Made me withdraw more.  I'd been seeing intense swirls of colour-like fireworks and more recently have begun to see these sort of spinning pyramids and cubes.  They don't bother me too much now that I know what is causing it.'

 

Mr P:       'I became aware of something spherical forming in the top left quadrant of my blindness…the sphere quickly focused into the round black straight haired head of an oriental girl with a ponytail at each side. The child was wearing a yellow one piece baby-grow type outfit with some black geometric design throughout, similar to a small diamond shaped polka-dot pattern. I was looking down at her on my left side where she was just standing for a while then her face changed to a very grotesque menacing one…the mouth was large and open with long white pointed teeth similar to a Monkfish mouth.'

 

Ms B:        'I am 92 and live with macular degeneration. One day upon returning to my aged care facility, as I was walking down the hall towards my room, I noticed something strange. It looked as if someone had been very busy while I was away painting colours and lines to the many framed pictures that lined the hallway. I asked a friend to accompany me down the hall to show him. He couldn't see anything.  I laughingly said,"I don't think they like men."  I then saw another friend and said, "Something is really worrying me and I don't know if I should tell you." I then blurted out, "I have been seeing things all week. I am seeing things that are not there."  I was so relieved when she knew exactly what I was talking about. She explained it to me like it was a sort of phantom limb for deteriorating eyesight. I have been a nurse so I knew what this meant.'

'In that first week I saw a big bunch of grapes on the dinner table. I knew that they were not there but I would experiment by reaching out and trying to touch them. Needless to say, my hand went right through them... What I often see are clouds of prolific 'blossoms'. They are intensely coloured- mainly pinks but some lilacs and mauves. They are not on any branch or vine but just appear -clusters of them- clouds of little pretty circles. They are not flowers -but flower-like- the size of a 20c piece. They appear suddenly and disappear just as suddenly....They gather in groups or bunches of different sizes, but never singly...There is always a lovely atmosphere accompanying them - welcoming and beneficent.'

'I also see many - 40 to 50 - horses with shabby riders. With so much movement going on it's hard to describe details. It's dusty and after they ride up, they mill about in a chaotic way....When I told the nurse, she took urine samples and I was put on antibiotics. I guess the assumption was I was delirious. I find it interesting that not one professional specialising in Aged Care had even heard of these symptoms or of this syndrome. My friend sticky-taped a page of CBS information and this has been quite valuable when I have tried to explain to staff what I was experiencing.'