What I Wish My Family and Friends Understood About AMD
My life is good. You all know that because you are my family and friends.
You also know there is something wrong with my eyes. But I don’t think most of you quite understand what it is. I would like to explain it to you. So here goes...
It is not just 'old age'
The problem with my eyesight is not just because of "old age." I won’t just eventually "get over it." I have a disease for which there is no cure. It is called age-related macular degeneration (AMD). It is a progressive disease and will probably keep getting worse. Getting a new pair of glasses won’t help me.
The best I can hope for right now is that it doesn’t progress quickly. There are some treatments which may slow it down if my vision deteriorates in the future.
You would be surprised if you saw...
Because I can still do quite a few things, you may think I don’t have much wrong with my vision. You don’t realise that I struggle a lot of the time. I see squiggly lines where there should be straight lines. I see a gray patch in the middle of my vision. Without good lighting, I can’t see very well at all.
The font on all of my devices is enlarged to a really big size. You would be surprised if you saw it. This means I read more slowly, and I often get tired doing it. Good light is needed to read, and for a newspaper or magazine, I also need a magnifier. Even then, a magnifier can’t make wiggly letters look normal — they are just bigger wiggly letters.
Worries about driving and eyesight tests
You may have noticed that I don’t accept invitations to go out in the evening anymore (unless someone comes to pick me up). I’m not being antisocial — I just can’t see well enough to drive in the dark.
You may think that just because I have my license and can drive in the daytime, I can drive anytime. That isn’t the case. I can’t see well enough in the dark, and the glare of headlights makes things worse.
I worry each year about passing my eyesight test for my driver’s license. What will I do if I can’t drive at all? This is a big deal for me.
Trouble recognizing familiar faces
Because my central vision is nearly gone, I can’t recognize faces anymore. Even you, my closest family and friends, are a mystery to me until you speak.
I would really appreciate if you would say your name as you approach me. It would be so much easier. And please approach me from the front so that I have some time to try to work out who you are.
Using bump dots around the house
Have you seen the little bump dots on most of my appliances? That’s so I know which buttons to push. I can feel the dots. Without them, I have no hope of finding the right button.
I learnt that lesson when I put the microwave on for 2 hours instead of 2 minutes. That cup of coffee would have been well and truly done after 2 hours (and so would the microwave). Luckily, I wondered why it was taking so long and turned it off.
Your help might be needed in the future
Do you wonder why I have to go to the retina specialist every 6 months, especially if there’s no treatment for me at the moment? Why don’t I just pop along to the optometrist once a year?
This is because, if my sight deteriorates, it’s important to catch it early. There is now treatment for the advanced form of dry macular degeneration, geographic atrophy (GA), in the form of an injection. There are also injections if my dry AMD turns to wet.
I’m always nervous about these appointments because I’m never certain of the outcome. If my eyes are dilated, or I have an injection, I may not be able to drive myself home. One way or the other, there is the prospect of eye injections in my future. Your help may be needed at that stage!
Increasing understanding
As I said at the beginning, my life is good. I’m happy, and I have no complaints. There is always hope, and I have plenty of that.
But now you understand just a bit more about me, and understanding is always good between family and friends.
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