Experiencing Macular Degeneration.

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I thought I would write about Macular Degeneration from the point of view (pardon the pun) of someone who is experiencing it.

This is a condition where the Macula at the back of the eye, degenerates with ageing. People who have the condition lose their central vision.

This results in loss of visual acuity and/or losing the ability to use contrast.

Because the problem is with the central vision, people may not be able to see other people’s features.

People who have this condition can fall into various categories, they may be extremely challenged and have very poor sight, or they may be just struggling to see what people without the condition can see and take for granted.

People, in general, do not understand this condition; I used to be one of them, and wonder why the sufferer (I hate that word but cannot think of a better one to use) can see some things, but not others.

Let me give you an example. I was in a store the other day looking for a warm cardigan. The cardigan I wanted was hung fairly high, and I could not see the sizes. So I asked the assistant for some help because I have a vision problem.

She asked what size I wanted, passed it down and walked away. I managed to find what I wanted eventually. But I had to keep lifting the various cardigans down because I could not see the sizes. This is to do with contrast. The sizes on the labels were in such small print that I could not see them. The sizes on the hangers were yellow against brown. NO CONTRAST.

When I went to the counter to pay, the unhelpful assistant was standing watching. The assistant behind the till asked if I wanted a bag, and when I looked down there was a five pence piece on the floor so I joked that I would have a bag as the five pence for it had just been supplied, and I picked it up.

The other Assistant, remarked, “Your sight can’t be that bad then if you can see that!”

I don’t know about you, but I hate having to be defensive. So I tried very patiently to explain that there are some things that I can see and others I can’t, and the reason why I could see the silver five pence piece was that it contrasted well with the dark carpet on the floor.

This event is what prompted me to write this. In the group that I attend for MD we are very aware of people’s ignorance about this condition, and because people are living longer now and it is a degenerative condition, there are many more of us cropping who have the condition.

You may see people, like me, who walk around using a symbol cane. There are three types of canes for sight and vision problems.

Most of you will know about the regular white cane or walking stick, which has been in use for generations.

Then there is a cane with black and red stripes, which is for people with sight and hearing problems.

The cane that I use and is coming into popular use is a Symbol cane, or Identity cane.symbol-canesymbol-cane-folded It is to alert the public that I have a vision problem and to be patient if I seem to be slow or getting in the way, or I am asking for help.

This simple little device brings me more understanding and patience from people. Once they can see that there is a problem, because of my symbol cane, most people are kind.

But there are many people who are confused, which I have already mentioned.

The problem caused by lack of contrast manifests itself in a few ways. There is one example above. in my story about the cardigan hunt.

I can see letters as long as they are in good background and lettering colours.

I can see, black against white or yellow or pale colours.

But I cannot see lettering on two similar colours, for example; white on blue or green or pale colours, or black on red, brown on yellow, and horror of horrors two shades of the same colour.

A menu in a Restaurant I visited recently was in lilac lettering on a beige card. I could not see a thing! Even though compared to many I have good sight.

Contrast is also important for steps, bus and transport platforms, and edges of pavements. We already use contrast in our everyday lives for these things because of health and safety for everybody.

For people with MD, good contrast can be essential.

It may be worth while to consider that when you are designing an app or a website for example.

A report by the BBC from 2011 says that there are over 60,000 people in Britain with the condition and the numbers are predicted to rise.

http://www.bbc.co.uk/news/health-12736988

The condition is not curable, but there are things that you can do to help avoid it while you are younger. Also there are supplements that you can take to help control the speed that it takes control of your sight.

Once again good nutrition is vital http://www.allaboutvision.com/conditions/amd-prevention.htm  and supplements which contain Meso-Zeaxanthin as well as Lutein, Zeaxanthin, Vitamin C, Vitamin E, Zinc and copper.

You can obtain supplements claiming to be for your eyes, but the best ones contain the extra Meso-Zeaxanthin.

Eat plenty of green vegetables which contain Lutein.

I recently heard an eye consultant claim once again that it is a waste of money taking supplements for MD, because if you eat a good diet, that should be enough.

But the nutritionists among us will agree with me, that the question is “How many people bother with a good diet?” Secondly, by the time food reaches us, how many nutrients have seeped out, if they were there in the first place with the depleted soils of the twenty first century?

Other contributing factors, as well as the genetic one, are the same as for other conditions, smoking, obesity and lack of exercise. My contributing factors were smoking for thirty years, and the genetic one.

I tried to think of a better word than sufferer earlier, because I don’t see myself as a “Sufferer” but as someone who is experiencing the condition. However, it would sound crazy to go around saying “I’m experiencing the condition of Macular Degeneration!”

So please don’t misunderstand and think that I am asking for sympathy, I am simply letting you all know what MD is and what people “Experience” with it.

So, if you see people with a white symbol stick, yet you are wondering why they seem to be able to see, I hope that this information will help you to understand a bit more and shed light on the confusion.

Comments are welcome.

 

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6 Replies to “Experiencing Macular Degeneration.”

  1. Pardon another pun, but your blog post was a real eye-opener for me! I have certainly heard about MD and know I get tested for it every year, but had never heard what the condition actually feels like! And thank you for explaining the different types of canes. I didn’t know that. And yet, isn’t it too bad that something like that is necessary to remind us to be more patient and sensitive towards each other?

    Rather than “suffering from”, it sounds to me that you have courageously accepted what life has offered and are using your experiences to help us do the same!

    1. Thank you Andrea. You are right abot what you say regarding the need for a cane, before people consider others. I have realised with this condition, that we all need to be more compassionate. But I have also realised that there are a lot of compassionate and helpful people around.

  2. My paternal family side has 4 generations of premature MD. I’m sure it goes back more than 4.

    My grandmother was legally blind by age 48. My dad was diagnosed at 58. His youngest brother was legally blind by about the same age. His sister has always had bad vision, and now is beginning to have MD symptoms at 73.

    I have my eyes checked about every 2 years with the retina specialist who treated my dad. Dad died if lung cancer at 69. Long history of smoking and alcohol use age. However, my grandmother never had those vices, just bad genetic luck of the draw.

    I take a lot of supplements to try to prevent. I’ve seen first hand how MD can affect you.

    Good wishes to you, Patricia, in your struggles with MD.

    1. Thank you for your comments Liz I did not realise that MD could start so young. Which supplements do you take? I also forgot to mention in the article that there are two types of MD dry and wet. Mine has turned to wet now, and am having regualr checkups. to see how fast it is progressing. I am in a quandary about the injections but will wait until they offer them to me before making a decision.

  3. Patricia. what an insightful post. I honestly did not realise just how MD affected a person’s sight. Thank you for sharing this story, and raising my awareness, and many others.

    1. Thank you Carrie. That is the reason why I have written it, to raise awareness. People need to be aware of this problem. I hope that it makes up for all the times when I thought that people were not really visually impaired, just because it seemed that they could see some things.

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