It is difficult to answer this as there are three distinct stages of the disease, essentially it boils down to;
- Early diagnosis no loss of vision
- Loss of vision in one eye but good vision in the other
- Loss of vision in both eyes
As a child albeit a middle aged child you may first hear about their problem at any of these stages. This depends on the parent they may casually inform you that their optometrist mentioned they had a bit of a problem, but not worth worrying about. Or it may be a major crisis as a problem they had been ‘managing’ has now got out of control.
For what ever reason it has driven you to this site so it needs addressing. The three stages need different approaches and you need to understand the underlying problems as well as the immediately obvious ones.
Go to the appropriate posts for more info.
The most overlooked people in the world of MD are the family and friends of the person. You are unsure of what is happening, whether you can help, whether you should help. What to do or not to do or what to say or not say. There may be whispered conversations out of earshot with other family members about Mum or Dad. I hope that you will find answers within this site or discover where to go if more information is needed. I regard you as the unsung heroes of macular degeneration, your input advice and help will be the most useful help available, it is practical and offered with real commitment but most of all with love.
Some posts are tagged deliberately just for family and friends, but you will learn from all posts.
family and friends
I shamelessly stole this title from a book The Selfish Pig’s Guide To Caring: How to cope with the emotional and practical aspects of caring for someone‘. Hugh Marriott who wrote the book is a carer for his wife. The book illustrates the problems of being a carer for someone with a disability and the problems that ensue.
Although it is not about AMD in any way it illustrates the common problems associated with suddenly be confronted by someone who has acquired a disability.
The essential message for the carer is that although they are in a caring situation, they have to look after themselves first, otherwise they are of no use to anyone.
It also highlights the problems of the carer that they can be invisible to the ‘professionals’ but are expected to jump whenever they are around. They are not trained but are expected to know exactly what to do all the time. They are also expected to undertake tasks that professionals wouldn’t do unless they have the right equipment.
This is a must read for anyone who has taken up a caring role, but has yet to have the ‘fairy dust’ of the ‘carer’ sprinkled over them yet.
If you are still feeling confused, ignorant, ignored and taken for granted. This is a dummies guide to caring. Beg steal or borrow a copy it is worth some of your time.
The newly visually impaired have many emotions swirling around their brains. One of the strongest tends to be; ‘ I AM NOT GOING TO USE A WHITE STICK’.
- I am not going to label myself or be labelled by using a white stick.
- I am going to carry on as before.
- I don’t need one I can see well enough to get around without one.
- I would feel guilty using one I can still see a lot.
- I am not sufficiently blind to use one.
- I would make myself vulnerable by using one.
Once one of these thoughts has crystallised it can be very difficult to change it. However let us examine them the first point is they all begin with the word I, they are all based around the individuals world view of themselves. This is a selfish assumption and takes little regard for others.
My view is this introverted view of the non use of a white stick is far too insular and results in rudeness. The white stick is an instrument of good manners it makes life easier and more courteous for everybody. Interactions between people are fraught with tension at the best of times. There are unwritten codes of conduct that are observed in many different scenarios. In shops when buying things, walking down a street acknowledging strangers, acquaintances or friends, each has its own ritual of greeting and disengagement. In social places cafes, clubs, churches wherever people gather.
The point of a white stick is to help other people not directly the person with the stick. When someone has AMD they are acutely aware of it, but the rest of the population is completely unaware of it. The public have an idea of what a blind person is, they wear dark glasses all the time, they have a guide dog, and they are tapping things with a stick to get around. None of which applies to the average AMD sufferer.
If you have AMD you walk around with little problem you aren’t going to walk into a lamppost or fall over a bench. However you can’t recognise who is sat on the bench and you can’t read prices in shops or even distinguish different packets of food or tins. The confusion and irritation caused by someone trying to cope can be reduced significantly by the judicious use of a signal cane, it is simple good manners, it is rude not to use a cane to help others as well as your self.