Charles Bonnet Syndrome

My 91 year old mother has Dry macular degeneration with Charles bonnet syndrome. Her hallucinations are really starting to cause her anxiety as she also has beginning dementia and does not quite understand the connection. She lives in a assisted living home and her room,is filled with animals, men,women,and babies at different times. I would like comments from anyone experiencing this or that has a loved one that has this that might be able to shed some light on ways to help. thank you.

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Re: Charles Bonnet Syndrome



I have experienced the same hallucination for about four years and just today learned the name of it and that others have it too. I was not frightened or bothered by it but glad to know what it is! I read for hours a day on my computer monitor and my illusion, I believe, is based on that. When I am relaxed and still, looking at a wall or a ceiling or some other light-colored flat space, i see type scrolling upwards and sometimes also scrolling to the left—just what my brain receives when I am scrolling and reading on the screen. I see formatting of paragraphs (some looks like poetry) and different sizes and blackness of type. The words fly by so fast that I can't read them, but I occasionally recognize single letters or once in awhile a word. The image is pale, so that also makes it too difficult to read.

If I'm going blind (I have Fuchs' Dystrophy) it would be comforting to know that I might expect to "re-read" some things, but I'll have to take a course in speed reading first! Has anyone else ever experienced this phenomenon? I have described it to friends...never thinking they might suspect I have dementia. I'll now have to 'educate' them about Charles Bonnet Syndrome.


Re: Charles Bonnet Syndrome



Visual hallucinations are important to be understood by the patients. I have seen game characters around my room luckily i had read about it before it happened and soon realized it was a flash.


Re: Charles Bonnet Syndrome



Hello, my name is Ana and I live in Michigan. My dad lives in Portugal and he suffers from MD. For the last 3 months he is experiecing hallucinations that we think are related with the Syndrome of Charles Bonnet. Because it is impossible for him to go online, we are looking people hwo meight be interested to share their experiences with this syndrome with him. He lives in Portugal but he speacks excelent english. Please be so kind to call me on my cell after 4PM/east so we can discuss time zone differences. My dad can call the US with out any costs. Thank you so much for the attencion you could spare to dad.
My contacts are : ana.aboim.inglez@gmail.com cell.: +15867468599


Re: Charles Bonnet Syndrome



You may want to read some of the information on VisionAware about this syndrome:
http://www.visionaware.org/info/your-eye-condition...
http://www.visionaware.org/blog/visionaware-blog/w...
http://www.visionaware.org/blog/visionaware-blog/n...
Also Sheila has written a blog post about her own experiences:
http://www.visionaware.org/blog/visionaware-blog/c...
Thanks for checking at VisionAware.


Re: Charles Bonnet Syndrome



Good Afternoon: I too have now experienced CBS for the past three years. My visual hallucinations began as I very rapidly lost the remainder of my eyesight. Initially it was very distracting and the hallucinations were constant. Interestingly enough, my hallucinations seemed to be connected to my own life experiences. Having taught mathematics and other developmental classes at a local technical college as well as having lifetime hobbies that included painting and crafting of all types, my hallucinations were centered around numbers, words, colors and beautiful geometric patterns.

Given that your mother is experiencing hallucinations involving babies, animals and people, it could be possible that her brain is recreating images that are somehow part of her life experiences. If she is outgoing and enjoys socializing and the companionship of pets or other individuals, CBS may be presenting her with hallucinations that fill the loss of her failing eyesight. Having dimensia can add to her frustration and pose a real challenge for you in that you will have to reassure her that the hallucinations are harmless. The best way that I can explain the whole issue with the hallucinations is that my brain has not gotten the message that my eyes do not function now.

When she tells you about what she is seeing, allow her to describe and share with you. Reassure her and keep her talking. She should be allowed to comfortably share her visual hallucinations. Use the opportunity to talk about her past and interject humor. It is important for her to feel comfortable in discussing what she is seeing. Hopefully she will become less anxious over time.


Re: Charles Bonnet Syndrome



My siblings and I are trying to help our mother who has all the symptoms of CBS. She also has some significant hearing loss and experiences auditory hallucinations along with the visual ones. She has created a whole scenario around the "ghosts" in her house.


Re: Charles Bonnet Syndrome



My mother in law sees an older man putting on her clothes and stealing them with the aid of 2 little girls. She also sees birds in her house and a circus outside. She is at her wits end with what she calls "the ghosts" are there any support groups in Missoula,MT? We just found out about CBS.


Re: Charles Bonnet Syndrome



MBusch
Sounds as if you have been able to put Charles Bonnet Syndrome in its place as an illusion and that you are seeing the humorous side of it as much as possible. Thank you for sharing this experience as I think it will helpful to others for whom CBS is a new experience.
Have you considered using the services of a Vision Rehabilitation Therapist and/or an Orientation & Mobility Specialist to learn techniques to help with your light sensitivity, reading adaptations, and balance issues? One place to start in seeking such services would be at Vocational Rehabilitation in your state. Or the AFB Directory of Services on this website lists other sources of such services available in your state. Just a suggestion in case you have not already pursued VRT and O&M instruction.
Please let me know if I may be of help in locating either of these types of professionals in your area if you are interested.
Julia Brock, CVRT


Re: Charles Bonnet Syndrome



OK I find this Syndrome humorous. I have seen on two different occasions, lady's with 1950 hairdo's looking at me. one over my TV, and the other on my front porch. I used to have cats, and I see things I think are coming around the corner into the room. I see small animals scampering away from me or flying away from me. The best description of this syndrome, is that it is humorous, frustrating by not ghoulish. I lost my right eye do to cancer (Choroidal Melanoma). I am bothered and frustrated by the fact I can not read any more, I have severe light sensitivity issues, along with no dept perception and balance issues.


Re: Charles Bonnet Syndrome



Hello bye092775:

This is Maureen Duffy, who writes about eye research, eye diseases, and low vision for VisionAware. First, let me say that you are a very good friend for researching and reaching out as you have. Since you ended up on our Charles Bonnet Syndrome (CBS) discussion thread, I am assuming you may think this is a possibility, and it may well be.

It would not be right for me, as a vision professional, to make any kind of diagnosis for you, but I have written about and researched CBS for quite some time, ever since I first encountered it in one of the totally blind adults I was teaching. This student was seeing people, too - although he was aware that these "people images" were not real. This awareness of the difference between an "illusion" (as in CBS) and a "delusion" (believing that the images are indeed real) can indicate (but not always) that it is CBS and not dementia.

What I can do for you as a first step is to direct you some good, basic CBS information on our site: http://www.visionaware.org/info/your-eye-condition...

Within that article are several very helpful links to additional information, especially the CBS page on the Royal National Institute for the Blind (RNIB) website.

Also, many professionals do recommend thorough physical and neurological exams to rule out the presence of other diseases and disorders that may cause CBS-like symptoms, such as dementias, stroke, and Parkinson's disease, for example.

From personal experience, I know that Johns Hopkins has very fine ophthalmology and low vision departments, so I'm quite certain your friend would receive good, compassionate care there.

If you need more information, please feel free to write again. I am happy to help you and your friend.


Re: Charles Bonnet Syndrome



I am looking for direction for my mother's friend who has no living relative or any advocate to help her in her situation. Gloria has macular degeneration caused by lupus. She has been blind for over 10 years at this point. She has started experiencing "people in various stages of dress and undress" that she says are ll over her apartment. There are so many people that at times she can't get into her bathroom, nor can she get into her bed. These people follow her and appear in church on the walls and appear in other people's apartments. At this point the retirement villa that she lives in want to put her in the dementia ward. She has someone stay with her throughout each night. Since there is no one to take care of her and no advocate, I started researching on line and found your site. I am hoping to get some direction for her before they decide to lock her away. She is 90 and a very active 90! The villa's next step is to send her to Hopkins Hospital in Baltimore, Md.


Re: Charles Bonnet Syndrome



My CBS hallucinations so far have taken the form of splotches of color. I know that doesn't sound as "interesting" as some of the things people report seeing, but they are truly beautiful. Once the tree outside my balcony had lovely splashes of a pink infused with light. I am reminded of how Vincent Van Gogh saw things that other people could not see and what amazing art he created. I am using this experience of having amd and these hallucinations in my own artwork.


Re: Charles Bonnet Syndrome



I've had this happen once. Good thing I had read about it before it happened. One of my daughter's faces appeared in what I believe is referred to as a flasher. Hasn't happened since, but I expect it will.


Re: Charles Bonnet Syndrome



I had this problem I though I was loosing it, but I ask my doctor, fellow blind friends they did't know what I was talking about. well, after about two or three months it went away. I don't know why but I did pray about it,so maybe that will help. try it


Re: Charles Bonnet Syndrome



I found out about Charles Bonnet Syndrome through an article in VisionAware. I brought it up at our support group meeting as most of our group are older adults and may be concerned about possible dementia. I was glad that I had knowledge the evening after an eye surgery last spring. As I was having dinner with my brother I realized that there were shrubs and trees appearing behind him blowing in an unfelt breeze. Soon his image was obscured by a lovely willow tree, I still hadn't said anything to him. I looked quickly to the left using my nonsurgical eye and looked back, all of the greenery was now gone. A while later I reached up to touch what I thought was some interactive art in a hospital hallway and realized that I was just touching a plain wall and the appearance of the art was gone. I was very glad that I understood what was happening!


Re: Charles Bonnet Syndrome



Grandmother
It sounds as if you are well informed about Charles Bonnet syndrome with regard to your mother's dry macular degeneration. Support groups in various parts of the country have been formed by persons experiencing Charles Bonnet syndrome. The following suggestions have been offered by support group members in dealing with Charles Bonnet syndrome. Although your mother's situation is complicated by beginning dementia, the following suggestions may be worth a try to lessen or manage images and hallucinations:
closing the eyes and then opening them
moving the eyes in rapid back-and-forth and up-and-down movements
looking away, or walking away, from the images or hallucinations
staring at, or fixating on, the images
turning on a light
concentrating on something else/looking for distraction
approaching and/or hitting at the image or hallucination
shouting at the image or hallucination
If you haven't already, you might read the blog posts on the visionaware.org website pertaining to Charles Bonnet syndrome.
I hope this information is helpful to you and your mother.
Julie Brock CVRT


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