Timing Is Everything With Macular Degeneration

They say "timing is everything," but with age-related macular degeneration (AMD), timing is also very difficult. The difficulty is we need to develop strategies to cope with changing vision, but we don’t know how fast our sight will deteriorate.

Not everyone is worried about progression

It seems that, for some people, their sight doesn’t change much over decades after their diagnosis. I have 2 friends who have dry macular degeneration. When I empathized with them and tried to suggest ways of coping, I was surprised by their replies. They both said their specialists weren’t worried, and that they would die of something else before their sight was affected. Perhaps it is because AMD doesn’t run in their families, or perhaps it is because they are at a very early stage. Whatever the case for them, I know I’m not in that boat.

How can we know how to prepare for progression?

With both of my parents having AMD, I know I’m at risk of quick progression, but just how fast, I don’t know. In 10 years I’ve progressed to intermediate dry AMD and then geographic atrophy in one eye, and the wet form in the other eye. How can I best prepare when I don’t know the timeframe? That is the $64,000-dollar question.

Some prepping I've done already

Some preparations have been made already. I didn’t need any timeframe to buy a 65-inch television. It’s a good purchase in anyone’s books. That’s not to say I can see it perfectly, but it’s certainly better than the small television I had before.

The remote is amazing, too. I can operate it by touch. It’s designed that way. I didn’t believe it when I first got it. I was complaining that I couldn’t see the buttons, but it only took a few days until I could operate it without looking.

Should I move to a different house for my safety?

One of my major issues is if and when I should move house. Where I am now I have steep internal steps. And that’s just one of the issues.

The laundry is downstairs, so I can’t avoid going there. I hang on to the railing for dear life now. Every fall that anyone has ever had in this house has been on the infamous bottom step.

What a shame to have to move house just because of this. Should I move now or wait until it is much more of a problem? What if my eyes deteriorate quickly and I can’t drive? That will make it much more difficult to move.

Transportation and issues with access to care

If I move, should I move to be near my son? I don’t have any other family to help me, but he lives in a rural area, hours from medical specialists. This move might be "out of the frying pan, into the fire." I would have family support, but no readily accessible medical treatment. Now that one of my eyes has developed wet macular degeneration, I need regular injections. With treatment such a long distance away, would this really be a good idea?

Is it better to decide earlier?

My parents both had AMD, but they managed to stay in their large house until their nineties with minimal assistance. I think a bit of good luck was involved there, because after my father’s second fall, they both had to move into a nursing home. With no forward planning, they had limited choice as to where they could go.

Would they have been better to make the move earlier and have a planned and controlled move? Who’s to say? That’s the timing issue I’m up against now. I’m nowhere near my nineties, but I can see what’s ahead.

Deciding whether or not to stop driving

What about giving up my license? I can see well enough to drive in the daytime. I just completed a long country road trip (knowing that perhaps this may be out of the question in due course). Driving at night is too difficult, and I don’t do that now.

Will I know when the time is right to stop driving completely? I hope I make the decision when the time is right.

We are not alone

I’m certainly not alone in dealing with these issues. Many of us with macular degeneration will face these decisions sooner or later. And that is exactly the problem — will it be sooner or later?