Macular Degeneration and Me

Low Vision and High Hope

WHAT’S IT LIKE TO HAVE MAC DEGEN ANYWAY?

It’s difficult to find the words to describe this overwhelming and demoralizing disease that affects millions of people.  According to the American Health Assistance Foundation eleven million people in the United States have some form of macular degeneration (expected to double to 22 million by 2050) and the total cost for low vision in the United States is in excess of $51 billion.  The global costs are crushing.

So what is it like to have macular degeneration?  I think the first word that comes to my mind is surprise.  It’s surprising to find out that you can’t see things that other people can see.  It’s a surprise when you first notice you can’t see the color of the birds at your feeder.  It’s a surprise when you stumble or fall because you can’t see that dip in the sidewalk because your contrast is gone.  It’s a surprise when you think you are about to hit the car in front of you because your depth perception is gone.  It’s a surprise when you can’t read street signs or recognize one of your friends at the market.

And then  I think comes the disbelief, the fear, the anger that this is happening to you and you are only in your 60’s.  Although I was diagnosed at the age of 50 it was only in my early 60s that the disease progressed to loss of some central vision, color fade, loss of contrast and depth perception.  What would I do for all the rest of my years ?

If you’ve looked at the Definitions page you will know that ARMD or Age-Related Macular Degeneration is the leading cause of vision loss in Americans 65 years of age or older.  It is a progressive eye disease that causes deterioration of the macula, the central part of the retina.  The dry type of the disease progresses slowly through three stages:  early, intermediate and advanced.  You may find that you need more light and eventually may have a large blurry spot in the center of your vision.  Again this form of the disease progresses slowly.

And then there’s the wet type of the disease which can progress rapidly as abnormal blood vessels form and leak fluid into the macula causing more rapid damage.  This was my diagnosis in my left eye in 2008.

Because there are no visible symptoms of this disease your friends and family may not realize or understand what you are going through.  This is one of the hardest things to deal with and probably the easiest to remedy.  Be PRO-ACTIVE –  I tell people I have an eye condition that affects my vision.  If you had a broken leg people would know but with a ‘hidden’ disease the easiest way to help yourself is to tell people about it.  I’ve never had anyone refuse to help me and I’ve made some friends too.

Coming up next?  More About Living With Mac Degen, Light Up Your Life and Your Low Vision Care Team

AUDIO  What’s It LikeIA1205_06022011101236534_1151827 (1)

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3 thoughts on “WHAT’S IT LIKE TO HAVE MAC DEGEN ANYWAY?

  1. This is a really good post, Pep — helps me see the world through your eyes. I also like your suggestion for being proactive with others who can’t possibly know you have AMD — I’ve seen you do this and I really think it makes your own experience less frustrating.

    Love how this new blog is unfolding!!!

  2. Norma Deen Juracsik on said:

    I have wet Mac Degen in my left eye, so can’t see a face in front of me, but can see everything periferally, unless the Mac Degen scar tissue sometimes bleeds and then that eye is blind (until I’m told the body will after a month or so reabsorb the blood). I do have good vision in my right eye which is the great thing. There are many one eyed people out there, including the great Babe Ruth, so I am thankful I have that. I didn’t realize that it could go so very fast from dry mac to wet mac. Even though I went to a retina physician 5 years ago, when I was developing the dry type, no one told me to carefully watch straight lines to see if they changed. So even though I got the 3 injections, it was too late and they didn’t bring my sight back in the left eye. I’m told there is some kind of telescope contact lense they can plant in your eye, so you won’t be totally blind but will have only straight ahead vision. I have no need of that now and hope I never will. I can read anything, no matter how small, in front of me, but realize I need good light to do that. So, my night driving days are coming to an end because our rods and cones change as we get older, so I could really use 2 eyes now to see better at night. Thank goodness there are plenty of matinees and great things I can do in the day time, so I won’t miss the night so much except for the rock concerts. Breakfast is my favorite meal so I joined a meetup.com breakfast club. The frustrating thing for me is that I am a visual person – love looking at all the beauty of the earth and love taking photos of it all. Hope I don’t lose the ability to do that.

    • What a lovely note and very timely. When you lose that one eye it sure makes you conscious of all the other blessings we have. And you are right,night driving isn’t easy for lots of people, even those with two good eyes. Taking such a positive approach while also staying up on the latest technology will keep you in good spirits too.

      I can’t say enough about good lighting, for those with good vision, and definitely for those of us with low vision. I find that good high light helps my reading 100%.

      As for looking at the beauty of the earth and taking photos my iPad has helped me so much – the camera is great and the ability to stretch the picture is great. There is a young woman who has been blind for a number of years and she takes the most beautiful photos. I will post more about her and her blog in the next few days.

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