When we began working with older blind and low vision folks, in 1995,
neither Cathy nor I had ever heard of such a condition. People who
"saw" things were pretty much labeled as having dementia. But about
that same time we spoke with a group of eye physicians who told us
about what they called, Macular Dementia Hallucinations. Later, a
social worker from the Community Services for the Blind, in Seattle,
talked about the Charles Bonnet
Syndrome. Also, one of our group members said he had been told this
was a condition he had. Personally, I think the condition may be more
prevalent than 10% of visually impaired people, just because most
people are not eager to talk about conditions that they are not
certain as to the causes. But we can be pretty certain that this is
what is going on just by the general behavior of the client. Dementia
is usually more serious and there is paranoia and fear and suspicion
involved. Most people who do admit to "seeing" things that are not
there, are not so much disturbed by what is going on inside their head
as they are of what family and friends will say. The woman who kept
her curtains taped down could be dealing with dementia, but she
insisted that she was seeing "Shadow People" peering into her home.
The fact that they never spoke when she told them to go away
frightened her. The only other time we were certain it was not
Charles Bonnet Syndrome was a woman who had owned a variety store in
Spokane. She and her husband retired when she began accusing all of
the customers of stealing. She believed that she could see them
sticking items in their pockets, purses and down the front of their
pants. She had severe Macular Degeneration, which made it unlikely
that she could see anyone taking anything smaller than a microwave.
She also had developed serious memory loss.
So, if you're still reading, I'll tell you a little known fact about
my own eye condition. I was born with cataracts and had the lenses
lanced when I was four. I had a detached retina in my left eye at 17,
and lost the sight in that eye. At 29, about 6 weeks shy of 30, my
right eye detached, and I've been totally blind since March 3 of 1965.
What surprised me was the bouncing lights, and the multi colored spots
that dance and flow inside my head. Washes of incandescent light that
shimmers, brightens and dims. And then, for no reason at all, I might
"see" the pages of a telephone book. The pages are back lit and the
print is dark enough that I can "read" the names and the phone
numbers. One time Cathy wrote down some of the numbers and names. We
never found the people, but all of the prefixes matched numbers in the
San Francisco phone book.
For many years I would suddenly "see" a plaid table cloth. deep read
and dark blue colors. On the plaid cloth sat a vase filled with
Shasta Daisies, yellow Mums and Pansies, with a sprig of greenery.
The vase was always the same one, a very ordinary vase except that it
was the color of burnt peanuts, sort of a brownish orange color. All
of this was three dimensional.
It's been a while since I've seen either the phone listings or the
flowers. Only the dancing, flickering, annoying lights continue.
That and the sizzling in my left ear.
Carl Jarvis
On 6/9/18, Miriam Vieni <miriamvieni@xxxxxxxxxxxxx> wrote:
Well, I have to admit that I've never heard of it. I never came across it
when I was working with elderly blind people back in the early 60's, nor did
Fred ever mention it to me in relation to the clients that his rehab
teaching department dealt with. He died in 1985. Is this something that was
identified after the mid eighties? At any rate, the woman whom you
described who thought people were looking into her windows, sounds more like
she has dementia than Charles Bonnet Syndrome because there's a touch of
paranoia in her hallucination. But my friend who lost almost all of his
sight from RP, did once tell me that even after he had only a tiny bit of
light perception, he would stand in his basement and have the illusion that
he could see his surroundings, even though he knew that this couldn't be
true.
Miriam
-----Original Message-----
From: blind-democracy-bounce@xxxxxxxxxxxxx
<blind-democracy-bounce@xxxxxxxxxxxxx> On Behalf Of Carl Jarvis
Sent: Saturday, June 09, 2018 4:58 PM
To: blind-democracy <blind-democracy@xxxxxxxxxxxxx>
Cc: Miriam Vieni <miriamvieni@xxxxxxxxxxxxx>
Subject: [blind-democracy] Charles Bonnet syndrome
Miriam,
In close to 3,000 clients over the past 23 years, we've seen at least 300 to
400 folks who show symptoms of Charles Bonnet Syndrom. Here's a bit more
information.
Carl
***
Charles Bonnet syndrome refers to the visual hallucinations caused by the
brain's adjustment to significant vision loss. It occurs most often among
the elderly who are more likely than any other age group to have eye
conditions that affect sight, such as age-related macular degeneration.
******
Visual hallucinations are a normal response the brain has to the loss of
vision. However, as Charles Bonnet syndrome isn't widely known, many people
worry about what it means and fear they may be developing a serious mental
illness or dementia. **It can also cause practical problems(like the fellow
who was driving on a deserted road and slammed into the rear end of an
invisible vehicle).
Charles Bonnet syndrome - CNIB
www.cnib.ca/en/your-eyes/eye-conditions/Pages/Charles-Bonnet-syndrome.aspx
Result details
Charles Bonnet Syndrome is not a mental illness, nor is it a symptom of
dementia or any other disease. Rather, it is a condition specifically
related to vision loss.
Charles Bonnet syndrome | Genetic and Rare Diseases Information ...
https://rarediseases.info.nih.gov/diseases/10343/charles-bonnet-syndrome
Result details
Charles Bonnet syndrome (CBS) is a disease in which visual hallucinations
occur as a result of vision loss. CBS is not thought to be related to
psychosis or ...
Charles Bonnet syndrome - Wikipedia
https://en.wikipedia.org/wiki/Visual_release_hallucinations
Result details
Visual release hallucinations, also known as Charles Bonnet syndrome
(CBS) is a type of ... Among older adults (> 65 years) with significant
vision loss, the prevalence of Charles Bonnet syndrome has been reported to
be between 10% and ...
Charles Bonnet Syndrome - Look After Your Eyes
https://lookafteryoureyes.org/eye-conditions/charles-bonnet-syndrome/
Result details
In Charles Bonnet Syndrome, people with poor vision may experience silent
visual hallucinations where the brain tries to 'fill in' detail in blind
areas.
Charles Bonnet syndrome & eye removal (enucleation)
www.charlesbonnetsyndrome.org › News Result details Charles Bonnet syndrome
& eye removal (enucleation). The link between eye removal and the
possibility of contracting Charles Bonnet syndrome
(CBS) has ...
