That reminds me of a much less spectacular phenomenon that I have experienced
recently, but only at night in bed, with my eyes closed. It sometimes seems as
if I am looking into a brightly lit space, perhaps sunlit, but I don't see any
objects, just this brightness. And then compare that to what is happening when
I'm awake and an artificially lit room, the same room with the same light, is
sometimes bright and sometimes dim. The whole thing is, to say the least,
disconcerting.
Miriam
-----Original Message-----
From: blind-democracy-bounce@xxxxxxxxxxxxx
<blind-democracy-bounce@xxxxxxxxxxxxx> On Behalf Of Carl Jarvis
Sent: Saturday, June 09, 2018 9:33 PM
To: blind-democracy@xxxxxxxxxxxxx
Subject: [blind-democracy] Re: Charles Bonnet syndrome
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-syndro
me
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 ...
