<html xmlns:v="urn:schemas-microsoft-com:vml" xmlns:o="urn:schemas-microsoft-com:office:office" xmlns:w="urn:schemas-microsoft-com:office:word" xmlns:m="http://schemas.microsoft.com/office/2004/12/omml" xmlns="http://www.w3.org/TR/REC-html40"><head><META HTTP-EQUIV="Content-Type" CONTENT="text/html; charset=us-ascii"><meta name=Generator content="Microsoft Word 15 (filtered medium)"><style><!--
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</o:shapelayout></xml><![endif]--></head><body lang=EN-US link="#0563C1" vlink="#954F72" style='word-wrap:break-word'><div class=WordSection1><p class=MsoNormal>Thanks for posting this. I have known several people with the syndrome. We had a caller on our Thursday Rise and Shine with Newsline group for awhile who experienced it. I didn’t know about the scary hallucinations though. How sad!<o:p></o:p></p><p class=MsoNormal><o:p> </o:p></p><p class=MsoNormal>Sherri<o:p></o:p></p><p class=MsoNormal><o:p> </o:p></p><div><div style='border:none;border-top:solid #E1E1E1 1.0pt;padding:3.0pt 0in 0in 0in'><p class=MsoNormal><b>From:</b> NFBF-L <nfbf-l-bounces@nfbnet.org> <b>On Behalf Of </b>Kaye via NFBF-L<br><b>Sent:</b> Saturday, February 27, 2021 10:22 PM<br><b>To:</b> 'NFB of Florida Internet Mailing List' <nfbf-l@nfbnet.org><br><b>Cc:</b> kaye.j.zimpher@gmail.com<br><b>Subject:</b> [NFBF-L] FW: Blind People Experiencing Terrifying Hallucinations On The Rise During Lockdown<o:p></o:p></p></div></div><p class=MsoNormal><o:p> </o:p></p><p class=MsoNormal>I usually don’t post forwards, but found this article fascinating.<o:p></o:p></p><p class=MsoNormal><o:p> </o:p></p><p class=MsoNormal><o:p> </o:p></p><div><div style='border:none;border-top:solid #E1E1E1 1.0pt;padding:3.0pt 0in 0in 0in'><p class=MsoNormal><b>From:</b> Geoff Eden <<a href="mailto:geden1@cogeco.ca">geden1@cogeco.ca</a>> <br><b>Sent:</b> Friday, February 26, 2021 1:05 AM<br><b>To:</b> undisclosed-recipients:<br><b>Subject:</b> Blind People Experiencing Terrifying Hallucinations On The Rise During Lockdown<o:p></o:p></p></div></div><p class=MsoNormal><o:p> </o:p></p><p class=MsoNormal>Blind People Experiencing Terrifying Hallucinations On The Rise During Lockdown <o:p></o:p></p><div><div><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'> <o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'>Gus Alexiou Contributor Forbes<o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'> <o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'>Disturbing news emerged last week that incidences of blind people experiencing distressing hallucinations have increased during the national lockdown periods that have dominated the past 12 months.<o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'> <o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'>In a year where, at times, the whole of society has felt like it’s living through a horror movie, these reports come as an additional blow to a community that has endured particular struggles with social distancing and the fact that essential guided tactile assistance when out in public is currently considered unsafe. <o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'> <o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'>The hallucinations are not solely associated with lockdown, they are a manifestation of a condition that is little known but was, nevertheless, first documented as far back as 1760.<o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'> <o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'>Charles Bonnet Syndrome or CBS is named after the 18th-century Swiss naturalist and philosopher who noted his grandfather, with cataracts in both eyes, suffering from vivid hallucinations, despite being of sound mind.<o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'> <o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'>Though much remains unknown about the condition’s underlying physiological and psychological drivers, experts believe it is exacerbated by tiredness and stress.<o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'> <o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'>Last week, Consultant Ophthalmologist Professor Mariya Moosajee told the BBC, "The main triggers are loneliness, reduced exercise, exposure to chronic depressing news - all things we are seeing in lockdown."<o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'> <o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'>This is further supported by the U.K.-based charity the Royal National Institute Of Blind People, who report a 50% spike in calls about the condition to its national helpline.<o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'> <o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'>Additional research from University College London found that half of patients with CBS, which is believed to affect around 1 in 5 patients with severe sight loss and occurs more commonly in older patients, stated that their hallucinations had become more sinister during lockdown and 50% said they were now more frequent.<o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'> <o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'>The rare condition was recently featured in the popular British soap opera Coronation Street.<o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'> <o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'>"Seeing" with the brain<o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'> <o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'>The hallucinations are ascribed to neurological changes in the way the eyes and brain communicate during the course of various eye diseases, such as Age-related macular degeneration (AMD), cataracts, glaucoma and inherited retinal disorders.<o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'> <o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'>Kings College Neuroscientist Dr. Dominic Ffytche, the sole globally-acknowledged expert on Charles Bonnet Syndrome told The Mirror, “The nerve cells in the retina send a constant stream of impulses along the visual pathways, which are passed to the visual parts of the brain.”<o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'> <o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'>"If the retina is damaged, the stream of impulses reduces. Paradoxically, the response of the brain is not to reduce but rather increase the cells firing, and it is this increase that causes hallucinations.”<o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'> <o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'>Also described by some as the sight loss equivalent of an amputee experiencing a “phantom limb,” the loss of vital brain signals to dampen down and regulate electrical activity in the visual cortex, can cause visions lasting for anything from a few seconds, to several minutes at a time.<o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'> <o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'>The hallucinations themselves can be curious, even pleasant on occasions. People have reported “seeing” cartoon characters, unicorns, bubbles, rainbows and beautiful landscapes.<o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'> <o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'>Other images, such as floating musical notes, grids, shapes, mosaics and lettering and mathematical equations appearing on the wall at home, sound somewhat psychedelic but not necessarily disturbing.<o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'> <o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'>Living in a horror movie<o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'> <o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'>It is, however, the increased prevalence of sinister hallucinations during the long dark months of lockdown that are of greatest concern.<o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'> <o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'>Ghost faces, staring eyes, snarling devil dogs and zombies with blood dripping from empty eye sockets have all been cited.<o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'> <o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'>Strange apparitions, gargoyles, Big Cats roaming the garden and figures dressed in period costume have also been observed.<o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'> <o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'>Thankfully, the brain appears to be aware that what it is sensing is not real but as this first-person account demonstrates, the limitless nature of the human imagination means that some people experiencing CBS might journey to some very dark places.<o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'> <o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'>Relaying his personal account of CBS on the National Eye Research Centre website, Dr Amit Patel, who lost his sight in 2012 due to a hemorrhage in both eyes stated, “My personal hallucination is of a young woman covered in blood, mud, and tears.<o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'> <o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'>"She stands in a terrifying silence and she follows me everywhere – on the train, on the tube, in the street. My wife has even heard me shouting at her in my sleep. My guide dog Kika can sense when I have a hallucination and she very sweetly puts her head on my knee to comfort me.”<o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'> <o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'>Hallucinations, particularly the more frightening ones, can cause a surge in anxiety but there are very real physical hazards too, such as an increased risk of falling in the street or down the stairs if the hallucinations appear suddenly.<o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'> <o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'>Another sad aspect of Charles Bonnet syndrome is that individuals often suffer in silence. Due to the older age profile of most patients, some fear that the strange images are unrelated to their sight loss but are, instead, an early indication of dementia.<o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'> <o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'>Talking helps<o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'> <o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'>Five years ago, Judith Potts launched Esme’s Umbrella, an organization dedicated to supporting those living with Charles Bonnet Syndrome, in memory of her late mother, who immediately feared mental illness after experiencing the symptoms of CBS.<o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'> <o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'>"People who develop it think immediately they've developed a mental health condition," Potts said in an interview with BBC News.<o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'> <o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'>"So, they don't confide in anyone and they live in their world of uninvited images, it's utterly terrifying."<o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'> <o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'>To make matters worse, for those that do disclose, many General Practitioners and medics are unaware of CBS and therefore initially suspect their patient may be experiencing a form of psychosis.<o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'> <o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'>However, Professor Moosajee is unequivocal in stating that there is no debate surrounding how very real CBS is.<o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'> <o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'>"Ophthalmologists should all be aware of CBS. We are all taught about CBS and there is no myth about it,” she explained in a previous interview.<o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'> <o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'>Later she continued, "We definitely know it affects patients and if people are misdiagnosed, then that is probably coming from non-ophthalmologists who are not aware of the condition.”<o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'> <o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'>If anything good is to arise from this latest surge of CBS cases, it might be that both public awareness and that of non-eye specialist healthcare professionals increases.<o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'> <o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'>There is currently no cure for Charles Bonnet Syndrome. Although, some medications, such as anti-depressants and anti-epileptic drugs, are sometimes used to reduce the symptoms.<o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'> <o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'>With practice, patients might be able to come up with their own strategies to make the hallucination go away. These might include adopting specific eye movements such as rapid blinking.<o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'> <o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'>Reaching out towards the image, leaving the room, altering the lighting and creating a distraction by switching on the TV or radio may also be effective.<o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'> <o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'>People experiencing CBS are certainly encouraged not to suffer in silence. Instead, they should reach out to friends, family and healthcare professionals, as well as specific support networks and charities like Esme’s Umbrella and RNIB, where they can also share their experiences with others living with the condition.<o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'> <o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'>Further research is needed to better understand the physiology behind CBS and this will likely include larger-scale clinical studies comparing the MRI scans of patients with sight loss who report the symptoms of CBS with those who do not.<o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'> <o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'>In the shorter term, it would be hoped that for those unfortunate patients currently feeling like they have been living in a horror movie over the past year, relief may not be too far away.<o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'> <o:p></o:p></p><p class=MsoNormal style='mso-margin-top-alt:auto;mso-margin-bottom-alt:auto'>With national vaccination programs continuing apace and governments beginning to talk about the early stages of a Covid-19 exit strategy, perhaps the phantoms of the mind’s eye will slowly recede, once the all too real nightmare that has been enveloping the outside world for the past year does the same.<o:p></o:p></p></div></div></div></body></html>