Retinopathy and possibly blind partner in the very near fututre

Toni-Mari

Good Evening to you all,

My name is Toni and I've been lurking around the forum recently and looks like a very helpful place (minus the flaming and what not, but you get that everywhere)

My partner has recently lost sight in one eye due to Diabetic Retinopathy and I was just wondering if anyone else has experience of sight loss and can advise.
It is likely he will lose sight in his left eye also, so any help appreciated with regards to how I can help him when vision is completely gone in both eyes, e.g amendments to home.
Also, does anyone have experience with retinopathy and would like to give me any more info on what it's like to live with it?

Much appreciated!
Toni

nannytone_2

hi...my name is Toni too!

i don't have the same condition as your partner, but have been registered blind for many years.
I don't think you would need adaptations to your home, as it's a familiar place and your partner will know it well. just obviously don't leave things about for him to trip over! also, put things back where you find them......i can put my hand on whatever i need, as i always keep them in the same place and it's so annoying when my husband moves something and i cant find it ( the biggist culprit being the television remote control! i always have it on the living room window ledge, and my husband is inclined to leave it on his chair!)
i don't turn lights on at home, as because it's familiar i find it just as easy to walk about in the dark as i do with lights on.
i'd also say, go along with what your partner wants. make it clear that youre prepared to help in any way you can..but theres nothing worse than being mollycoddled and stifled.
in my experience most blind people manage really well at home it's outside that the problems start.

i do use relief gel for telling what temperature i've got the oven on and there are devices to put on cups etc to tell you when the cup is almost full, which are handy.

Toni-Mari

Aww that's wonderful, very encouraging, thank you!!

slummymummyof3

What about trying to minimise the damage to the remaining eye which still has some sight? The tighter control your partner has on his blood sugars, the less damage to his eye and indeed other organs. Is he insulin controlled? Have you had a look at the low carb forum on diabetes.co.uk?

Toni-Mari

I think a lot of the damage was done when he was a teenagers rebelling against having the condition, and paying for it now :-(
Can't have any more laser, next step is a "Vitrectomy" I think.
Couyld probably be controlling it slightly better than he is but I can only do so much

Horace

Thankfully I don't have retinopathy but do have glaucoma affecting both eyes and no central vision in my left eye with partial peripheral vision.

When your OH goes to the specialist eye hospital do they have a section run by a charity? I know that the Birmingham & Midland Eye Centre have a desk manned by Birmingham Focus who can arrange a visit to help you in the home with bumpers on things.

I visited a charity the other day (this is a charity that the business club I am are supporting this year)..it was the Thomas Pocklington Trust (Stourbridge Resource Centre) - they may have other resource centres. This is where blind/partially sighted people can go to learn how to use computers, learn braille, socialise with others. They also have a talking monthly magazine and a weekly newspaper.

I know that the RNIB has a talking book service and they sell various aides but these aides can be quite expensive. I have a handy gadget that I hang over the edge of mugs so that when I pour the hot water in then the thing vibrates (I tend to use this when I have been in hospital and when my eyes are particularly tired because I have missed the mug that many times I have nearly burned myself).

jetta_wales

The RNIB have an ECLO (can't remember what it stands for) in some hospitals and their role is to aid people in getting the help in the community that they need like home living assesments, cane training, social services etc it is worth asking at your eye clinic if they have a charity running a service like that there or if not contact the RNIB directly they will be more than happy to help you in any way they can.

Toni-Mari

Thank you very much you guys :-) So helpful.
Have acquired a few bits of literature from RNIB and helping my OH realise this is not the end of the world.