I have been treated for macular degeneration for 14 years. In 2007, I went to get my reading glasses checked. I had no complaints. On examining me, the doctor spotted macular degeneration and made an appointment for me to see an ophthalmologist who treated AMD. I had wet AMD in my left eye (liquid seeping into the eye from behind the retina indicating more advanced disease), and dry AMD in my right. I had noticed nothing!
Injections into My eye
I began treatment with monthly eye appointments. The eye with wet AMD would be treated; the dry eye would be watched. Treatment for AMD is an injection of the medicine into the eye. It’s uncomfortable to think of, but the eye is numbed first and I felt nothing but a little pressure. This slows, but doesn’t cure, the disease.^
Seeing the damage for myself
In 2015, one evening at home, I noticed that in my bad eye, I could see the damage in my macula. At twilight or a little darker, looking at a pale wall, and squinting slightly, I saw a small, dark, irregular patch. No one told me about this, I just discovered it. So because I already knew I had dry AMD in my good eye, I began watching for the wet AMD there too. If you have wet AMD in one eye, the other eye may be at risk. And one evening, I saw a small black area in the macula of the good eye. This damage search may not work for other people, but it worked for me.
Finding it myself
The doctor concurred saying he didn’t think everyone would spot this. But other people have not been told to look! Finding it myself did give me an odd sense of satisfaction: I understood what was going on!
After this the program changed and I got shots according to whether there was leakage in either eye.
12 wonderful years
In 2019, after 12 wonderful years of slowly degrading but very useful vision, I lost the central vision in my left eye. The last little piece of vision loss shocked me. Suddenly I could only read one or two of the biggest letters on the chart. I had noticed no change myself. After all, I had very good vision in my less damaged right eye.
An optician spotted something else.
You might think that under such close care it would be impossible for anything else to happen. But it did, and again in a setting that reminds us of the importance of regular, general, eye check-ups. I went to an optician. He spotted something in both eyes. I had narrow angle glaucoma, a disease that if untreated, can result in blindness. He sent me to a glaucoma specialist, and I had a procedure which permits the eyes to drain properly.
Eyeglasses again!
In 2020, I noticed that I was missing a few letters on the eye chart with my good eye. I was having trouble reading, seeing subtle elements on television and in photos. I had to look carefully for things on the floor or sidewalk. I stopped driving, (though I am now reconsidering). I do all the financial work in the family, all the planning. I use the computer a lot. I was very aware of the pitfall of not making extra efforts, so I pushed myself to arrange better lighting, or get a magnifier. But the strangest pitfall I fell into was not getting my glasses checked. I just needed new glasses! I had overlooked that simple step. My fear of AMD had taken over. Finally I complained more firmly and the doctor specifically said, “There is nothing happening with your macula, you should get your glasses checked.”
When I put on my new glasses, I was shocked. The very good vision is my eye was back. I was amazed and chastened. Don’t jump to conclusions about your eyes I said to myself. Speak up and continue regular care.
Llooking straight into my future
I completely understand the desire not to delve too much into what one’s future will be. I’m scared but I am trying to be practical. I have Addisons disease, a rare autoimmune disease. It has trained me over time to be attentive and a good patient. An Addison crisis can kill. I must take pills, carry a hypodermic, and much more. So I was already good at self-care before AMD. Self-care requires information, guidance from others and looking straight into my future so that I can ask myself, what will I do then?
I can see a lot
I’ve found a lot of comfort of course, in the fact that AMD takes away central vision, not all sight. I often look at the world, covering my good eye, to look through the worst damaged one, just to see what I can see. And I can see a lot. I can orient myself for example. I can see more letters on the eye chart by looking not at the letter but to the side of it. Later, I will have to alert people that I’m going to identify them by looking slightly away.
Will a doctor prepare me for my loss?
I’ve often wondered as the end of my central vision approaches, whether a doctor was going to help prepare me for my complete loss of central vision. So far, this is not discussed. Of course I still have good vision. And the office is full of hope and good humor. I am just beginning to consider whom I should talk to. I know there are vision rehabilitation therapists and other people and machines that will help me. I might go to meetings or have a card I hand out to other patients in the waiting room!
The dismay, or fear, or shock of a diagnosis
When you get a serious illness, it unsettles you. You have to live with the new diagnosis for a while. You ask questions, read about the disease, and continue to let yourself change just a little so you can accommodate the disease. You might have moments of panic. It takes time. But the person that is you is still there, waiting for you to recover some from the dismay, or fear, or shock of a diagnosis, so you can work and live as close to what you wish as possible.
My AMD is stable. I haven’t lost the central vision in both eyes yet, but I will. I hope I can follow my own advice, and just work to be the most well and capable that I can.