Hello all

and welcome Hanna in our list. Ii is good to see someone else ffom Finland here
too.
Sorry for not writing here lately. Honestly, my vision has "downgraded" one step
during this autumn. That is, I have now lost the last tiny bit of my central
vision. (I have MD/ring scotoma).

Although the loss is not so big in percents of the total visual field, losing a
normal reading ability is a big change. We often talk about accepting the
handicap and adapting to the situation. In reality, not only needs it to be done
once but many times along the way depending on the functional as well as mental
effects on a RP patient. So, I have done quite a bit self rehabilitation lately,
learning new ways of doing things, getting assistive equipment etc. For example,
such things as memorising telephone numbers automatically gets better (or one
starts to use it more actively) when you cannot quickly take a peek in your
mobile phone's contents.

Some comments about light worms and black dots. Common assumption is that those
light phenomena occurs when a retinal cell dies. Some others claim that when the
signal from a defective retina is transferred to the visual cortex through
nerves and "electric filters" the result can be very strange.

When a child starts seeing these lights, she or he things it is perfectly
normal. The parents might think their child has mentally something wrong when he
talks about "fire flyes" in the middle of winter. For older patients the
apparition of these phenomena might be scaring and difficult to get used to at
first.

I am not sure but it is said that there lights are more common among MD
patients, especially with ring scotoma. In my case these light worms spin like
crazy around the centre when I sneeze, cough or shut off the brights. At times,
I have also started to experience black clouds growing in size and density
floating around the visual field and then slowly disappearing. First time I saw
these clouds, I was sailing and for a while I thought we would hit a storm
cloud.

Another thing is how past visual experiences and wild imagination might affect.
Particularly in case of MD, one is not able to fix the eyes on some detailed
target. That is like staring without looking thus taking the ephasis away from
analysing what you see to what you think you see or want to see. If I remember
correctly the above mentioned is called Charles Bonnet -phenomen. As an example
one older woman reported that she somethimes thought she saw her formerly
deceased husband appear to her after she woke up in the morning. I myself, going
out from a brightly illuminated house to a total darkness (especially in
countryside where there is total silence and new snow) I cant help imagining the
obscure horizon and silhouettes. At first this was really frustrating and
misleading when in reality I did not see anything. Also when I read intensiwely
with CCTV about 30 times enlarged texst on blac background just before going to
sleep, I actually continue to see different words even if I close my eyes.

For those who do not have personal experiences of light worms, there are
animated images on the internet. They are developed by a Finnish opthalmologist
and her team. I don't have the site address now but I can tell it to you when I
get it.

Bye for now,

Pekka