A guest blog from Judith Potts on a little-know condition called Charles Bonnet Syndrome, and the charity Esme’s Umbrella she set up to promote awareness of it.
My Mother was an independent lady, who lived happily on her own, enjoyed her social life and – despite her failing eyesight through late diagnosed glaucoma – completed the Telegraph crossword daily.
We noticed that her confidence was beginning to wane but what none of us knew – including her GP and optometrist – was that, as her eyesight diminished, there was a chance she might begin to see things which were not there. Her ophthalmologist could have warned us, but he chose not to do so.
One day, as I was leaving her flat, she suddenly said: “I do wish these people would get off my sofa. They go if I tap them on their shoulders”. She went on to describe more of her ‘visions’, as she called them – a gargoyle-like creature who jumped from table to chair, a tear-stained Victorian street child and, sometimes, the room morphed into a completely different place or the garden was taken over by an Edwardian funeral, complete with plumed horses and clergy in red cassocks.
The word ‘dementia’ hung in the air and I realised that fear of such a diagnosis had stopped her from confiding in me sooner. However, after a lead from a paragraph in a newspaper, I discovered the condition had a name – Charles Bonnet Syndrome. After researching on the internet I found Dr Dominic Ffytche, the sole globally-acknowledged expert in the condition. He explained the situation. The response of the brain to loss of vision is not to calm down but to increase the cells firing and this causes the silent visual hallucinations. If there is no serious memory loss or mental health problem, then the hallucinations are caused by CBS; there is no medication available, no consultants for CBS and precious little research.
After her death, I was determined to do something to raise awareness of CBS. I launched Esme’s Umbrella at the House of Commons and named it in memory of my Mother. That was in November 2015 and, since then, I have heard the CBS experiences of hundreds of people. their fears and their frustrations.
Sufferers report seeing all sorts of silent visual hallucinations – from words, patterns, worms, slugs and insects to people (large or small), gremlins, buildings and water. For some people, it is a condition which they manage well – it is easier to become accustomed to bunches of flowers or smiling Tibetan monks – but for others, a fully-grown tiger, people with guns and knives or an army marching through the room are terrifying. The hallucinations come from the brain – so they are sharp and clear, as opposed to the eyesight which is blurred or partial.
Research is vital, as are warnings from ophthalmologists when a patient’s eyesight begins to diminish. Too many people are living in frightened silence, thinking the hallucinations are the precursor to dementia.
My Mother was tormented by CBS for the rest of her life and we could find no support. Please contact us if you need support, would like to add your hallucinations or coping strategies to our website, or have any ideas for spreading the word.
Judith has recently set up a fundraising page to raise money for research into CBS. Please visit her Just Giving page if you would like to donate.