A less upbeat post

Not that it is any different to before but I want to write a description of Helen's state of vision/blindness. I thought this might be helpful for visitors here so they know how to alter their approach to her but also for those far away who are concerned for her and imagining our lives here.
Yesterday I took her back to the Optometrist who saw her at the beginning of her decline in vision back on ~5th August. She had examined her very thoroughly then (more so than the opthalmologist) so I thought it would be good to have a review with her. It was somewhat shocking for me. As I live with Helen day to day and what she can see seems to vary, plus we are trying giving her ongoing increased steroid medication to see if there is swelling around her optic nerves which can be reduced, I was hopeful that she would document some vision.
As it turns out she thinks both nerve heads show optic atrophy which essentially means the nerve fibres are dying which is not reversible. Both eyes are at the level of perceiving light and movement only and in fact the R eye was slightly better than the L even though this is the one that she found had a very constricted field when she first saw Helen.
I was disappointed and puzzled as in the day to day it certainly seems like she can see some things. The optometrist explained that blindness with optic atrophy is not complete blackness. It's more like being in a very dim/darkened room. She can still see shapes and movement and contrast but everything is very muted and indistinct. The optometrist said this is probably as bad as it gets so we will just have to keep living with it. We have another opthalmology appointment on the 13th so I will keep giving her the steroid tablets until then but it seems unlikely that it will improve anything if she does indeed have optic atrophy.
So...practically speaking in terms of interacting with her...she often has her eyes closed while she is awake so don't let this put you off, it is better not to have too many people talking in the room or around her if you want her to engage with you - just gets confusing to figure out who's saying what - so one to one or two to one is better than a crowd. If you are coming up to her it is good to put your hand on her arm and introduce yourself so she knows where and who you are. Even if she knows you well she may not pick it just from voice straight away. Visual input is minimal so sound and touch become more important. We've been enjoying radio and still watch TV shows together although she no longer needs shows with subtitles! She can still tell where objects are if we are walking with the walker to the toilet or the verandah and can reach out for a cup if you tell her it is there. For those who saw her a few months ago her walking and agility is much much better.
I have some audio books accumulated but haven't been using these much as yet.
In the last few days we've received lovely letters and cards from friends Chris and Greg, Peter and Joyce and Margaret. Helen enjoyed me reading these to her.
On Wednesday she and I went to her old Aqua-aerobics class and saw Kaye, Shirley and Bilha plus others Helen used to swim with. We didn't go in the pool but joined them at the cafe for the post work-out coffee. Jed came too and hid under a newspaper when the cafe owner came out as dogs aren't really allowed. He then disgraced himself by throwing up under a chair and after cleaning this and removing him I decided we should move on...
Anyway - just a bit of an update and some practical points. I found the optometrist's description of Helen's vision helpful as I had been imagining it to be better than it is.