Coping with Stargardt's

Most of us develop our own ways of coping with a disability. Simple things can really help. For example, I only buy cups and mugs which are white so I can easily see the level of the liquid when pouring tea or coffee. Although one's sense of hearing may or may not be heightened, there is more reliance on hearing, so the sense of hearing plays a major role in helping cope with the vision loss. You must be careful if you are relying heavily on hearing for crossing roads etc. If there is a lot of traffic or heavy traffic such as trucks, this can mask the sound of a smaller vehicle. I was once nearly run over by a bicycle.

Will it get worse?

Many doctors will tell you that Stargardt's progresses to a level where it will not get worse. I think they say this because they have only encountered patients with Age Related Macular Degeeration. This is a different disease with a different cause. Stargardt's Disease DOES get worse. I am living proof of this.

How can I protect my remaining sight?

Vision loss due to Stargardt's gets worse every time you are exposed to bright sunlight. You MUST wear eye protection when outdorrs. Sunglasses and a hat or visor should be your standard apparel for the Australian outdoors. It is my experience that UV radiation from TV and computer screens does not have a significant effect in vision loss. I say this because I have spent many years close to a computer screen using predominantly my right eye with a magnifying lens and my left eye closed. My left eye is still worse than my right eye.

What does someone with Stargardt's actually see?

This is a common question by partners, parents and friends of people with Stargardt's. It is almost as difficult to answer as describing the colour green to someone who has been totally blind from birth, but here goes. The central vision loss is a bit like a jigsaw puzzle with a bunch of pieces missing from the middle. No matter how big the "hole" in the central vision, the brain never sees black. Instead, it makes up an image based on what is visible. Sometimes this is a moving jumble of colour and shape. Other times, where you are looking at a plain surface, the image just looks like a wall of the same colour, almost as if sight was normal.

When looking at a person from normal speaking distance, their face is usually undefined or a blur. It is almost impossible to recognize a person by their face. It is helpful when approaching someone with Stargardt's to say something like "hello Jim, it's Fred". I hate name badges because eveyone knows who I am, but I don't know who anyone is.

Sometimes, when an object is in the blind area, it disappears completely. You can look at a doorknob and see a door without a doorknob. This can be dangerous if the object in the blind spot is an approaching car. I have walked into the back of parked cars because my brain was telling me there was nothing there but the road.

The nature of Macular Degeneration is such that you cannot see a person's face, but can detect a piece of lint on their shoulder. The peripheral vision also seems to be more sensitive to movement so that you can drop an object on the ground and pickit up easily, especially if it is moving. For this reason, people often think you rsight is not all that bad.

Assisting a vision impaired person

Some points to note

1. Vision impairment is not always obvious to an observer.

2. Other senses are not heightened by vision loss, however a vision impaired person may use senses such as hearing differently to a normal sighted person.

What visual aids are helpful?

There are many devices available to aid visually impaired people. The simplest passive devices are magnifying lenses, some versions of these are set into spectacle frames so you can hold an object or book with both hands without having to fumble with a lens as well. There are also small telescopes and monoculars which are helpful for reading street signs and train schedule boards.

The best active devices are the units with a TV camera and video screen. These can make just about anything readable, even the finest print.  The latest version is called The View. There are now hand held portable versions of thesesuch as the Strix and Pico. All these units are very expensive but older models are readily available second hand. You can usually find these in the for sale section of the Vision Australia newsletter..

There are some very good programs available for enlarging the size of computer displays. If you can't afford programs like Zoom Text, try Virtual Magnifying Glass. It is a free download and I use it in preference to the expensive software packages.

For a list of companies and organisations who supply visual aid devices, see the "Visual Aids" section of the Helpful Links page.

If there is any information you think I should add to this section, please send me an email info@stargardts-au.org