I realised some time ago that my approach to AMD differs from a lot of my colleagues. Trying to convince my colleagues about how to live with AMD is considerably harder than talking to people with AMD. Consequently I have started writing a book for the family and friends of people with AMD.
As an onlooker it is difficult to comprehend the problems of losing sight and how all encompassing it is, the individual almost has to begin a new life. So the book will be about how to help someone with sight loss from AMD.
I will post the first provisional chapter shortly, any feedback on it would be appreciated.
Blindness is a many faceted problem. While this blog is essentially about macular degeneration it helps to know about different forms of eye disease. I caught this radio feature on the BBC’s World service, Singer and broadcaster Mônica Vasconcelos is slowly losing her sight. Originally from Brazil, she now lives in London. This is her talking about her adaption to losing her sight.
It raises several issues that are worth pondering, but first of all a note of warning although she is struggling with loss of vision it is nothing like the loss from macular degeneration. She has retinitis pigmentosa this is almost the polar opposite of macular disease loss in its affects. (For more info about different forms of visual loss go to this post Blind people are not all equal).
Her relationship with a white stick is a running battle that is tied to her her brother who also has RP. She identifies most of the arguments for and against white sticks. It is a good listen, I highly recommend a few minutes of your time to learn from the coal face about coping and the challenges of the white stick. It lasts 50 minutes please click on the link below
Technically this is not a magnifier but it makes their use far more effective if you read the post on using a magnifier you will have seen you need to hold the magnifier close. The correct distance means you have to hold the magnifier and book very close, but this is tiring. It is difficult to hold a book and magnifier for long periods.
The answer is a reading stand in some form. You can then move your magnifier over the book without having to hold it, it is also at a comfortable angle.
The construction of the stand is critical, if you go on-line you can buy stands for resting cookbooks on. These are fine for the purpose intended but they are not good for the partially sighted you need it to support quite a lot of weight. You will press on the page so the design has to be pretty robust. It also needs to have a variable angle for ease of use. If you are interested go to amazon reading stands .
If youare handy you can make one yourself.
This is one of my favourite telescopes, although I have to confess I am not a great telescope advocate. This is a cost effective solution to a common problem. How to see the TV more easily?
The clip is fitted onto your own distance glasses. The advantage is you have your own prescription in your glasses to get the best possible vision. They can be used for TV but they can also be used for anything at a distance, cinema, theatre, or a sporting event. In fact they are best for outside events where you can’t get any closer to the action.
The TV can always be dragged closer or your chair can be moved to provide the same degree of magnification at nil cost.
The idiots quick guide to visual loss. No offence but the public and most people with visual loss are unsure about what they are really discussing. The majority of people think that blindness is no vision at all, as if your eyes were closed and there was no light or dark.
Complete blindness is relatively rare only about 3% of registered blind people have that much loss. The remaining 97% of blind people have vision but it is highly individual. There are certain main types of visual loss.
Those with macular disease lose central vision the effect is to cause detail blindness, the world becomes unfocused but the individual has navigational vision that enables them to get around relatively easily. This is in marked contrast to the diseases glaucoma and retinitis pigmentosa these are completely different forms of visual loss, they cause a loss of all the peripheral vision with just a small central field of vision. Imagine looking down a Smartie tube, you have good central vision you can see small detail quite well. But you have little idea of what is going on around you, a nightmare if you want to go anywhere. It causes serious mobility problems.
These two forms are the main forms of visual loss they are opposites and the most extreme. There are many variants of these, trauma, stroke and damage due to retinal detachments.