Lighting for poor vision, plus a miracle treatment

[nannoo_bird]

Hi everyone. I have peripheral retinopathy and in the past year or so it has got much worse, despite regular laser treatment. I would be happy to go anywhere to get treatment, if there are new surgeries or medication not necessarily on the NHS. I live in a cottage and am forever bumping into things or having to use a torch to read labels or look in dark corners. In the meantime, can you recommend any household aids that would improve general portable lighting in the places I need it? I have tried a head torch, workmen's lamps, uplighters without shades, but nothing really works. Please help - my husband doesn't understand and this is making me very depressed.

 

[carty]

I can't help with your lighting in the home but I am struggling to read and my brilliant local optician have me a hand held magnifying glass which lights up when you hold it and the lens is oblong shape which makes it easy to read along the page .The only name I can find is coil which is on the little bag that it came in I didn't have to pay for it as he said it was provided by the NHS
Carol

 

[Deleted member 475901]

Have you checked out the RNIB site for advice about products?

I have almost no peripheral vision in one eye and limited central vision in it (a congenital issue) and I learned that I should not try to carry anything breakable when tired (and on the way to bed) as I broke stuff or broke me.
Having a good contrast colour on furniture vs floors and on doorframes helps.
and a torch with a magnifying glass sounds useful.

Assistive aids and technology

www.rnib.org.uk

 

[nannoo_bird]

I can't help with your lighting in the home but I am struggling to read and my brilliant local optician have me a hand held magnifying glass which lights up when you hold it and the lens is oblong shape which makes it easy to read along the page .The only name I can find is coil which is on the little bag that it came in I didn't have to pay for it as he said it was provided by the NHS
Carol

Thank you so much Carol. I am OK-ish for reading, I just have new reading glasses and I have a magnifying glass in each room! My problem is two-fold. My vision is either totally under exposed in dark rooms, and totally over-exposed in sunlight, and nothing helps. I also have spaces in my vision especially in my right eye, that come and go. It is very unsettling and quite scary.

 

[lovinglife]

I bought a daylight lamp from a blind charity for my dad and I had a spare one that I used for crafting and he found them useful, dad had glaucoma and wet MD - a lady from the blind clinic came to his house and assessed him for all the extras like dots on the cooker etc and told him to put those fluorescent ceiling light strips around the house and in the kitchen especially as they light up all the corners and and you don’t stand in your own shadow

 

[nannoo_bird]

I bought a daylight lamp from a blind charity for my dad and I had a spare one that I used for crafting and he found them useful, dad had glaucoma and wet MD - a lady from the blind clinic came to his house and assessed him for all the extras like dots on the cooker etc and told him to put those fluorescent ceiling light strips around the house and in the kitchen especially as they light up all the corners and and you don’t stand in your own shadow

Thank you for this. It does not help that we have a 200 year old beamed cotttage which is naturally dark!! But I think those fluorescent strips might well be the answer. Again, my thanks. x

 

[lovinglife]

Thank you for this. It does not help that we have a 200 year old beamed cotttage which is naturally dark!! But I think those fluorescent strips might well be the answer. Again, my thanks. x

I know they’re not the prettiest of lightning and if my mam had been alive she’d have probably said no way lol but they did really help, and the daylight lamps aren’t harsh light though you would expect them to be. Dad used to have to have the curtains shut because the light hurt his eyes and he had these lamps would be on all day

 

[ingrid]

Hi everyone. I have peripheral retinopathy and in the past year or so it has got much worse, despite regular laser treatment. I would be happy to go anywhere to get treatment, if there are new surgeries or medication not necessarily on the NHS. I live in a cottage and am forever bumping into things or having to use a torch to read labels or look in dark corners. In the meantime, can you recommend any household aids that would improve general portable lighting in the places I need it? I have tried a head torch, workmen's lamps, uplighters without shades, but nothing really works. Please help - my husband doesn't understand and this is making me very depressed.

Hello! I think you meant proliferative retinopathy - it’s what I have too and have in the past had loads of laser. The laser itself causes the loss of vision in low light conditions unfortunately. Now I’m bleeding again in both eyes the latest approach now is injections rather than laser but that’s no good to us as we’ve already had all the laser! The injections, like the laser, help to stop any future bleeding (by shrivelling any abnormal blood vessels already there and also by preventing further new ones from growing), and that’s less destructive than the permanent effects of the laser burns, so for people just starting out on treatment for PDR (Proliferative Diabetic Retinopathy), it’s definitely the treatment of choice! As I said, alas, too late for us. I suppose I’m grateful there was at least some treatment avaliable when I was first diagnosed with PDR.

I’m also paying privately for an eye mask I wear at night - noctura400 - you can Google it. It’s supposed to do the same as the laser/injections. It’s been commissioned early this year by one NHS Trust in the country so far (in Surrey or Hampshire I can’t remember). My consultant doesn’t believe in its benefits for retinopathy, only for macula oedema, but I’m pretty convinced it can help. I’m also trying to follow a keto diet as per Dr. Bernstein’s book (Facebook DIY Retinopathy Solutions has been a mine of useful info for me ). BUT all of this is to slow down progression of the retinopathy disease, it’s not going to reverse damage already done boohoo or improve what sight we have lost as a result of previous laser treatment or bleeds.

I have an appointment coming up later this year at a low vision clinic at my hospital- you could ask if your hospital has one of those? I’ve had to wait ages for it!!! Tbh I think there’s better advice via these forums! x

 

[nannoo_bird]

Hello! I think you meant proliferative retinopathy - it’s what I have too and have in the past had loads of laser. The laser itself causes the loss of vision in low light conditions unfortunately. Now I’m bleeding again in both eyes the latest approach now is injections rather than laser but that’s no good to us as we’ve already had all the laser! The injections, like the laser, help to stop any future bleeding (by shrivelling any abnormal blood vessels already there and also by preventing further new ones from growing), and that’s less destructive than the permanent effects of the laser burns, so for people just starting out on treatment for PDR (Proliferative Diabetic Retinopathy), it’s definitely the treatment of choice! As I said, alas, too late for us. I suppose I’m grateful there was at least some treatment avaliable when I was first diagnosed with PDR.

I’m also paying privately for an eye mask I wear at night - noctura400 - you can Google it. It’s supposed to do the same as the laser/injections. It’s been commissioned early this year by one NHS Trust in the country so far (in Surrey or Hampshire I can’t remember). My consultant doesn’t believe in its benefits for retinopathy, only for macula oedema, but I’m pretty convinced it can help. I’m also trying to follow a keto diet as per Dr. Bernstein’s book (Facebook DIY Retinopathy Solutions has been a mine of useful info for me ). BUT all of this is to slow down progression of the retinopathy disease, it’s not going to reverse damage already done boohoo or improve what sight we have lost as a result of previous laser treatment or bleeds.

I have an appointment coming up later this year at a low vision clinic at my hospital- you could ask if your hospital has one of those? I’ve had to wait ages for it!!! Tbh I think there’s better advice via these forums! x

Hi there! Thank you so much. This is so interesting (if sad for us both), and I would love to reply properly when I have more time, if that's OK.

 

[glucoseintolerant]

Hi everyone. I have peripheral retinopathy and in the past year or so it has got much worse, despite regular laser treatment. I would be happy to go anywhere to get treatment, if there are new surgeries or medication not necessarily on the NHS. I live in a cottage and am forever bumping into things or having to use a torch to read labels or look in dark corners. In the meantime, can you recommend any household aids that would improve general portable lighting in the places I need it? I have tried a head torch, workmen's lamps, uplighters without shades, but nothing really works. Please help - my husband doesn't understand and this is making me very depressed.

Hi, have you tried clip on lights, which are rechargeable by USB connection. Because they are cordless, they eliminate the trip hazard. There is a huge choice on Amazon, some clip to shelves, headboards etc., and they have a flexible ‘goose neck’, so they can point into even the darkest corners. The bigger ones can be free standing, while smaller ones clip to books, making them easier to read. Most have several brightness settings and are operated by touch. I have a couple of small ones for reading and clipping to an embroidery frame, and two bigger ones on standby for use in power cuts. The lights are quite powerful, especially when on the bright white setting. I hope you find this information helpful.

 

[hboyt]

Hello! I think you meant proliferative retinopathy - it’s what I have too and have in the past had loads of laser. The laser itself causes the loss of vision in low light conditions unfortunately. Now I’m bleeding again in both eyes the latest approach now is injections rather than laser but that’s no good to us as we’ve already had all the laser! The injections, like the laser, help to stop any future bleeding (by shrivelling any abnormal blood vessels already there and also by preventing further new ones from growing), and that’s less destructive than the permanent effects of the laser burns, so for people just starting out on treatment for PDR (Proliferative Diabetic Retinopathy), it’s definitely the treatment of choice! As I said, alas, too late for us. I suppose I’m grateful there was at least some treatment avaliable when I was first diagnosed with PDR.

I’m also paying privately for an eye mask I wear at night - noctura400 - you can Google it. It’s supposed to do the same as the laser/injections. It’s been commissioned early this year by one NHS Trust in the country so far (in Surrey or Hampshire I can’t remember). My consultant doesn’t believe in its benefits for retinopathy, only for macula oedema, but I’m pretty convinced it can help. I’m also trying to follow a keto diet as per Dr. Bernstein’s book (Facebook DIY Retinopathy Solutions has been a mine of useful info for me ). BUT all of this is to slow down progression of the retinopathy disease, it’s not going to reverse damage already done boohoo or improve what sight we have lost as a result of previous laser treatment or bleeds.

I have an appointment coming up later this year at a low vision clinic at my hospital- you could ask if your hospital has one of those? I’ve had to wait ages for it!!! Tbh I think there’s better advice via these forums! x

Hi there
Interesting about the noctura400...I'm going to look into it!

I've got proliferative retinopathy as well ..for the past 5 years but have not had any treatment. I get scans every 6 months but they're just keeping watch on it. I was wondering if you know at what point they do treatment?

Just unsettling to me that there is a problem but I'm not offered any treatment!

 

[Trishhh]

Hi there
Interesting about the noctura400...I'm going to look into it!

I've got proliferative retinopathy as well ..for the past 5 years but have not had any treatment. I get scans every 6 months but they're just keeping watch on it. I was wondering if you know at what point they do treatment?

Just unsettling to me that there is a problem but I'm not offered any treatment!

Hi, they suggest treatment when new blood vessels start to firm in the retina, which is called proliferative diabetic retinopathy. Many people here say the best way to prevent retinopathy getting worse is tight blood glucose control. I wish you the best of luck.

 

[Trishhh]

Hello! I think you meant proliferative retinopathy - it’s what I have too and have in the past had loads of laser. The laser itself causes the loss of vision in low light conditions unfortunately. Now I’m bleeding again in both eyes the latest approach now is injections rather than laser but that’s no good to us as we’ve already had all the laser! The injections, like the laser, help to stop any future bleeding (by shrivelling any abnormal blood vessels already there and also by preventing further new ones from growing), and that’s less destructive than the permanent effects of the laser burns, so for people just starting out on treatment for PDR (Proliferative Diabetic Retinopathy), it’s definitely the treatment of choice! As I said, alas, too late for us. I suppose I’m grateful there was at least some treatment avaliable when I was first diagnosed with PDR.

I’m also paying privately for an eye mask I wear at night - noctura400 - you can Google it. It’s supposed to do the same as the laser/injections. It’s been commissioned early this year by one NHS Trust in the country so far (in Surrey or Hampshire I can’t remember). My consultant doesn’t believe in its benefits for retinopathy, only for macula oedema, but I’m pretty convinced it can help. I’m also trying to follow a keto diet as per Dr. Bernstein’s book (Facebook DIY Retinopathy Solutions has been a mine of useful info for me ). BUT all of this is to slow down progression of the retinopathy disease, it’s not going to reverse damage already done boohoo or improve what sight we have lost as a result of previous laser treatment or bleeds.

I have an appointment coming up later this year at a low vision clinic at my hospital- you could ask if your hospital has one of those? I’ve had to wait ages for it!!! Tbh I think there’s better advice via these forums! x

Hi Ingrid, I'm sorry to hear about the bleeding in your eyes. Hopefully the injections will solve it. My husband had his first treatment with laser yesterday and is, understandably, pretty upset. We were told by the doctors and also read about the injections being useful only for people who didn't get good results with laser, especially for macula oedema. Another research we read shows that laser and injections combined are better than laser alone, but no injections alone before laser. It's confusing and so worry that we might be doing what we're told when it might not be the best, just the lowest cost for the NHS...
I've never heard about the mask you mentioned. I'll look it up. Thanks for sharing and good luck with your treatment.
All the best!