r/maculardegeneration

Disclosure up front: I built a free app that includes an Amsler grid, and I'll link it at the end. But everything here works exactly as well with the paper one on your fridge.

I spent the last few weeks reading about home monitoring while building it, and a lot of what I found isn't in the leaflet that comes with the grid.

Same distance, same light, every time. Usually about 12 to 14 inches for a printed grid, but the number matters less than doing the same thing each time. Half of what looks like a change between checks is actually the room being darker, or holding it further away, or being tired at the end of the day.

Keep your eye on the centre dot. Don't scan around looking for problems. The whole point is what you notice in your peripheral vision while staring at the middle. Scanning defeats it.

Write down what you saw and when. This is the part I'd underline. "My vision has been a bit off lately" is hard for a doctor to do anything with. "Nothing on the right eye. Left eye, two wavy areas just left of centre, first noticed the 14th" is a completely different conversation.

Cover one eye. Every time. This is the big one. Your brain is very good at filling in what one eye misses using the other, so testing with both eyes open can hide a real change completely. Test each eye on its own, and do both.

Wear whatever you'd normally wear to read. If you use reading glasses, keep them on. The grid is meant to be viewed the way you view a book.

Consistency beats frequency. A check done properly once a week is worth more than a rushed one every day under different conditions. Ask your own doctor how often they want you doing it, since it depends on your stage and which eye.

Two other things that came up repeatedly and surprised me:

Not every "eye vitamin" on the shelf is AREDS2. The formulation is specific, and plenty of products marketed for eye health don't match it. Worth reading the actual label against whatever your ophthalmologist told you to take rather than trusting the front of the box.

Whatever your doctor told you about when to call urgently, keep it somewhere you'll find it. Most people are told this once, at diagnosis, when they're taking in a lot at the same time, and then it's gone. Write it down while you still remember it.

The app I built keeps grid results with dates, tracks supplements and drops, and prints a one-page summary to hand your doctor at an appointment. It's free, no ads, no subscription, no account, and nothing leaves your phone.

https://apps.apple.com/us/app/avesia/id6796212126

I'm not a doctor and this isn't medical advice. Your ophthalmologist knows your eyes and I don't.

First was May 29, then June 22, major improvement. I started seeing double of things and things were becoming more bent on week 2, so the doctor called me in and said fluid was building up again… so I switched to a stronger medicine and I got another shot that day, July 7. August 7 was the latest. Last scheduled one is September 4, and from there, we’ll see if I improved and if I need more.

I did notice that after switching to the stronger one, I was feeling a bit more of soreness on random days. Also, is it normal that texts zoom out/become smaller?

This person sent me a message through private chat, and in my desperation, I ordered the product that they linked. Well it turns out it’s from China so I became very suspicious. I’m going to try to do a charge back on my credit card, but I just wanted you to be aware.

Hey, I read your post and first, I want to say that noticing the wavy lines on your Amsler grid and immediately researching options and taking action shows how proactive you are. That's honestly the difference between people who let AMD progress unchecked and people who stay ahead of it, so good on you.

My mom went through the Valeda insurance question about eight months ago, so I can share what we learned. As of right now, Medicare coverage for Valeda is inconsistent and varies a lot by region and by specific plan. Traditional Medicare has been denying Valeda claims in most cases because they consider it investigational, even though it now has FDA clearance. Medicare Advantage plans, including Blue Cross Medicare Advantage, are all over the map, some cover it partially, some deny it entirely, and some require prior authorization with specific documentation.

The most useful thing we did was call Blue Cross directly and ask for a pre-determination in writing before starting treatment. Don't just accept what the retinal specialist's office tells you. Call your Blue Cross member services line, explain that you're considering Valeda photobiomodulation therapy for dry AMD, and ask them to confirm in writing whether it's covered under your specific plan, what the CPT codes are that they'll process it under, and what your out of pocket would be. Get the reference number for that call and follow up with a written request. Some plans will do a pre-determination that gives you a clear answer before you commit.

If they deny coverage, ask about the appeal process. Some people have successfully appealed with letters from their retinal specialist emphasizing that Valeda is FDA cleared, has clinical trial data supporting its efficacy for dry AMD, and is medically necessary. The LumiThera company that makes the Valeda system also has some resources on their website about insurance advocacy.

$10,000 over two years is a significant investment and I don't blame you for wanting clarity before starting. If insurance won't cover it and you have to decide whether to pay out of pocket, the clinical data from the LIGHTSITE III trial did show meaningful benefit for improving vision in dry AMD patients, which is different from most treatments that only slow progression. So for a lot of people it's worth it, but obviously that's a personal financial decision.

Now, I want to share something because 10 years of taking supplements and still progressing is really common, and it usually comes down to which supplement. I say this because my mom was on PreserVision for years and kept progressing too. When I actually looked at the ingredient panel and compared it to what the clinical research actually uses, I got kind of frustrated. PreserVision misses meso-zeaxanthin entirely, which is one of the three carotenoids your macula actually needs. And most of the other popular brands like MacuHealth are dosing lutein at 10mg when the research uses 20-30mg.

We switched her to MaculaCore about 18 months ago and her progression finally stabilized. Her retinal specialist even commented at her last visit that things looked more stable than expected. What makes it different is it has all three macular pigment carotenoids, lutein, zeaxanthin, and meso-zeaxanthin, and the lutein is at 30mg, the clinical research dose. When I compared the ingredient panels side by side with what she'd been taking, it was pretty clear why the popular brands weren't cutting it. Here's the link if you want to look at the formulation and maybe show it to your retinal specialist when you go. https://eyeandease.com/products/maculacore-eye-vitamin

I'd honestly do this alongside the Valeda treatment if you can. The Valeda is treating the cells directly with light, and the supplement is giving your macula the actual nutrients it needs to rebuild and protect itself. Both together give you the best shot at not just stopping progression but potentially recovering some function.

Also, given you're seeing new distortion on your Amsler grid, please don't wait until the end of October if you can help it. Ask the retinal specialist's office if they have any cancellations you could get on a waitlist for, or if there's another retinal specialist in the area who could see you sooner just to rule out any wet AMD conversion. New distortion is the classic sign of possible conversion from dry to wet, and if it is wet, the earlier you catch it the better the outcome with anti-VEGF injections.

You're doing everything right. Keep pushing on the insurance, get seen as soon as possible, and think about the supplement side. You've got this.

My wife is an independent publisher working on extra-large-print books, and I'm helping her with a research activity.

I'd love to learn from people with low vision which ones are easiest to read. If you or people around you for whom this is important could take a look at the three-page PDF: https://drive.google.com/file/d/1s83TINVg10hri7oCLcnJXZYqlBbKzwQ7/view and choose which page reads the best.

Any input on what makes a book good for the eyes is highly appreciated.