As we journeyed through lock-down, I received calls from people who confided their suicidal thoughts. It was obvious that more than just a chat was needed. Samaritans, The Silver Line, and The Macular Society’s telephone, group, counselling service all played their part.
There are still far too many people who are confiding in no one about their hallucinations and far too few GPs, hospital doctors and optometrists who know about CBS. All my calls to GPs on behalf of their patients during lock-down were met with astonishment – but gratitude too. None had heard of CBS, despite Professor Ffytche’s estimate of, at least,1 million people in the UK living with the condition.
My report of how COVID 19 was impacting on people living with CBS, inspired a piece of research, led by Professor Mariya Moosajee (Moorfields Eye Hospital, London) and published in BMJ Open Ophthalmology in January of this year. This proves that people need interaction, stimuli and exercise to help cope with CBS.
Funded by the National Institute of Health Research, Professor Ffytche’s ‘SHAPED’ study has also been published. It looked at visual hallucinations in dementia, Parkinson’s Disease and eye disease (Charles Bonnet Syndrome). There are suggestions of possible medication which can be tried, should the CBS visual hallucinations become too difficult to bear.
This is the link to the whole paper – https://jnnp.bmj.com/content/91/5/512
Online Patient Information Day
Having had to cancel the Patient Information Day planned for 13th March 2020, to mark the 300th birthday of Charles Bonnet, we made up for it with a great event on 16thNovember 2020. Hosted by Moorfields Bio-Medical research centre, we had to close the applications to attend at 600. It was an amazing online event and is now available on YouTube – https://youtu.be/Bgvr3QPTIxU?t=277
To my utter astonishment, I won Visionary’s National Partner Award and am the very proud recipient of a plaque to prove it.
I was honoured also to be asked to join Women in Vision and am probably the only member without a medical degree!
I wonder – will the CBS episodes, which have turned from annoying or upsetting to terrifying, retreat back once the stress and isolation is lifted? Or, will those people who developed CBS during lock-down, having never encountered it before, now retain the condition? Who knows? This is yet another factor in the unravelling of this complex condition.
Esme’s Umbrella will continue to work for the benefit of the whole Charles Bonnet Syndrome community.