Living with poor vision from macular disorders
At Bettersight we never under-estimate the potential impact that simple, general measures and advice can have on a patients ability to live with vision loss from macular problems.
Firstly many patients gain some solace in learning that no matter how bad their condition gets – macular disorders on their own do not lead to blindness. At Bettersight we are always surprised to learn that many patients who seek our help have never been told this simple fact – as ‘going blind’ frequently features at the very top of most peoples worst fears – this reassurance can often help start the process of rehabilitation that people require.
At Bettersight we work closely with several local NHS eye care services to allow our patients access to support services and ‘low vision aid services’.
The supportive measures that may help people to live with their condition are outlined below:
- Sight Impairment Registration
There are two main reasons for considering registration. Firstly the purpose is to try and access as much help and support from local services as we can. Many people find it comforting to know that they are ‘not alone’ with their problems once support officers make themselves known in an effort to find practical help and support for you in your own home.
Secondly – without registration its impossible for healthcare and social services to plan services accurately for the population of visually impaired people in their regions and indeed nationally.
Benefits of Sight impairment registration (previously known as partial sight registration)
- Offer of registration and social needs assessment
- Access to rehabilitation services
- Proof of registration with visual impairment card
- Membership of local societies for the blind
- Some regions offer free talking books with local libraries
- Concessionary bus pass
Benefits of Full sight impairment registration (previously known as blind registration)
- Blind persons tax allowance
- Car parking concessions – blue badge scheme
- Blind persons companion bus pass
- 50% reduction on TV license
Its a little known fact but the average 65 years old person needs almost three times as much light as the average 21 year old person. This is almost certainly amplified in macular disorders.
General lighting around the home needs to be bright without causing glare.
Task lighting can be especially helpful for reading and desk work in particular. They should be positioned below eye level so as not to cause glare. Ensure that the bulbs don’t get too hot (fluorescent rather than halogen / tungsten) and have a wide steady base for the task light so it doesn’t easily get knocked over.
Light bulbs – now that low energy bulbs are getting better – always look for the lumens rating – this is a better guide to the brightness rating than wattage – look for at least 600-700 lumens rating – this is around the same brightness as an old 60W bulb.
We find that pearlescent bulbs are easier to live with as they are less harsh and don’t cast uneven shadows that can be confusing for the vision impaired person.
An enormous range of magnifiers is available at different powers and for different tasks. Its probably best to be referred to a specialised low vision aid service attached to one of the main hospitals in your region to learn more about the different types of magnifiers and to have an opportunity to try out a few before selecting some for your own use.
In general however the higher the power the large the magnification and the narrower the field of vision – very high power magnifiers can be hard to hold steady enough to use for prolonged work. Most people generally find magnifiers works best at around the X2 to X4 range of power.
- Electronic magnifiers
Once again there are numerous types of electronic magnifiers with magnification ranges from X2 to X70 !!
At present electronic magnifiers are not provided by the NHS and before you invest what can be quite considerable sums its best to try out the magnifier that you are interested in. These devices tend to be good for short bursts of close work – such as looking at a photograph or looking at a food packet but most people find it difficult to read for prolonged periods of time with such devices.
Its probably best to get in touch with an organisation such as the macular disease society to learn more about such devices.
- Vision Hallucinations
Some people with very poor eyesight can experience visual hallucinations. This is called Charles-Bonnet syndrome. At Bettersight we have become increasingly aware of this problem. Our experience is that many patients are afraid to mention the fact that ‘they see things that they know aren’t there’ for fear of being ridiculed or worse.
Its thought that hallucinations are similar to ‘phantom limb’ sensations that can occur when someone loses a limb.
It may be that around one half of all people who have poor sight from any cause but especially from macular disorders could develop charles bonnet syndrome.
The kinds of things people have described to us in recent years – often in amazingly vivid detail too:
Grids, checkerboards, lattices, lines and strange colours
disembodied faces – sometimes famous people other times long lost relatives
Intricate geometrical patterns
Animals – often insects
Tiny people (Lilliputian hallucinations)
As the list indicates – some of the charles bonnet hallucinations can be extremely disconcerting if not actually frightening. In our experience people often find they can come to terms with these features once they have been able to discuss them so if you or a relative have described such disturbances please encourage them to mention it to their doctor.
In terms of treatment -unfortunately we don’t yet have a recognised treatment for this condition but at Bettersight we have found some success in optimising vision as much as possible – even a modest cataract in addition to macular disease may be enough to tip the balance towards generating this condition and we have seen successful resolution of charles bonnet hallucinations in treating such cases.
It may also be possible that general measures such as better lighting and keeping furniture in a constant place may help. Finally some recent research suggests that rapid eye movements at the onset of the symptoms may help to break the cycle of hallucinations – especially for the geometric patterns if not the more disturbing faces and figures.