Is This Progression?

By Sharon Moore

2 min read

Everyone I know that has age-related macular degeneration (AMD) has a degree of fear of progression. Not only am I fearful I will have progression, I am fearful I may not recognize the signs if it happens.

Daily diligence

Like many others, I have the Amsler grid posted front and center of my refrigerator. Every day or so I intently stare at the grid hoping I will recognize a change if it occurs.

I know that sudden changes such as visual distortions or sudden loss of central vision should be reported to my doctor. Just as troubling to me are the more subtle changes over time.

Subtle color changes

In the winter, my husband likes to feed birds. Recently he pointed out a tree full of Redbirds. I had no trouble seeing the tree or the birds but I did not see them as red.

I have the same problem seeing traffic signals when it is red. This is worse on older traffic lights where the lights have dimmed. Is this progression?

Wavy lines

For the past 2 years, I see wavy lines with my right eye when I look at the Amsler grid. Until recently, my left eye has fully compensated for the right. With both eyes open lines appeared straight.

Lately as I drive, I will look at a pole or other straight object and notice it looks bent. I blink and look again and it may appear straight once more. This is the scariest of all the changes to me.

Does it mean the right eye is progressing to the point the left can no longer compensate? I wonder if it’s okay to wait until my upcoming appointment or should I call now?

Blurry vision

Everything is a blur these days. That big 65” tv I bought last year is no longer clear from a few feet away. If I want to read the menu I stand right in front of the screen; reminiscent of childhood when we lay on the floor right in front of the tv.

Lately I have called out enthusiastic greetings to a friend at the grocery store. Too late, I realize it’s not someone I know. So I ask myself, is this progression or dry eyes which can also cause blurry vision?

Needing more light

I need more light to do my daily activities. Do I buy higher wattage bulbs or add additional light fixtures? Many lamps are made for lower watt bulbs.

I love to sew but I can’t read the display to change the stitch pattern. I have already installed a Led light strip and a gooseneck lamp next to my sewing machine. So I reach for my iPhone and the handy lighted magnifier app to change the setting.

I notice when I enter the house from outside on a sunny day that I can barely see where to walk. It takes a few minutes for my eyes to adjust. So I wonder, is this need for more light related to the passing years or is the AMD progressing?

Conclusion

My regular 6 month checkup is next month. I have decided none of my vision changes warrant a call to the retinal specialist. I will definitely bring up the topic of vision changes with my doctor and ask, Is the macular degeneration progressing?

Has your macular degeneration progressed lately? What does progression look like for you?

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Brown Eyed Girl Moderator
Sharon, I know exactly what you mean about the uncertainty of progression. I look at my Amsler Grid as often as I can (probably not as often as I should) and I'm left wondering, "Is this line a little more wiggly than last time?" or "Is this little gray patch a bit larger than before?" I went back to my specialist between appointments recently because I thought I noticed a change in one eye, and she found a change in the other eye! So much for my observations! But she did say she was glad I came, and it was better than missing something and not coming. I don't feel I can do this all the time though, because things vary from day to day, not to mention the very many dollars I'm out of pocket when I visit her. I do feel confident, however, that I'll notice a "serious" change should it occur. Then I'll be straight back to her! Wendy, Patient Leader.
1. Sharon Moore Moderator
 <inline-mention username="Brown Eyed Girl" user-id="3141081"/> you did the right thing going in right away when you noticed a change. I had surgery 2 weeks ago and had to reschedule my checkup. Crossing my fingers that all is ok when I get my scan. -Sharon Moore patient leader 
2. Brown Eyed Girl Moderator
 <inline-mention username="Sharon Moore" user-id="3129425"/> I hope you've recovered well from your surgery. Best of luck when you go for your scan. Wendy, Patient Leader.
ChrissyZ Member
I was recently diagnosed with MD in my right eye. The doctor said he'd see me in a year. I used the Amsler Grid today and noticed a few wavy lines and a small blurry area. Well, I have MD. Aren't I SUPPOSED to see these things? I don't want to spend another $40 co-pay just to be told that's to be expected. Please advise. 
1. Sharon Moore Moderator
 <inline-mention username="ChrissyZ" user-id="6740984"/> I can tell you that my doctor wants me to call with changes. If you were not seeing the wavy lines or blurred areas previously, I would count that as a change. I believe it’s always best to err on the side of caution. Keep us posted. Regards, Sharon Moore patient leader
davidrodger Member
I would like to see more comment from people like myself who are in the early stages of dry macular degeneration. I was diagnosed 17 months ago. All very worrying, though I still have good eyesight. Small scale studies interest me. There is one showing the significantly beneficial effects of curcumin; another on the benefits of combining L - Carnitine with CoQ 10 and high strength omega 3. I already take Viteyes 2, with its high dose vitamin C and E, zinc, copper, lutein and zeaxanthin. I also take mesozeaxanthin and astazeaxanthin, also resveratol. Also [name of restricted supplement removed]. Also taurine. I feel there may be something to gain from taking such a cocktail of supplements. A pro-active approach! Any comments here? 
1. Sharon Moore Moderator
 <inline-mention username="davidrodger" user-id="6711404"/> after reading the studies, I take curcumin, saffron, & CoQ10 in addition to areds2. My retinal specialist knows about my supplements. It’s best to check with your doctor or pharmacist for drug interactions with any prescription medications. Regards, Sharon Moore patient leader
davidrodger Member
Thank you, Sharon, for your prompt reply, also for this most interesting group. I gather the CoQ10 real efficacy is when it is combined with L - Carnitine and high Omega 3: that is what the small study found. To be honest, I have become my own retinal specialist - though that may sound a little arrogant, since I have a degree in English and am perfectly capable of reading fairly complicated reports. I am aware that curcumin interacts with my blood thinners { low strength [brand name drug removed]} but that is a risk that I as an adult am prepared to take, although I do take these medications at 12 hours apart from each other. Curcumin thins the blood some more - and CoQ10 thickens it, so to speak. My doctor was actually consulted, but he is a general practitioner and no expert. He advises some moderation. Just now I see my ophthamologist once a year for tests, but I may arrange this for every six months. [name of restricted supplement removed] is particularly praised for helping AMD, although it is expensive. I may investigate rampicyn - will have to check the spelling of the name! Thank you for the suggestion about saffron. I had not come across this before. I have a perfect dread of the drusen in my eyes getting worse - and all the items I have mentioned, taken together, gives me some hope of the condition stabilising or even reversing. All comments most welcome.
1. Sharon Moore Moderator
 <inline-mention username="davidrodger" user-id="6711404"/> I thought you might like to read this article about saffron https://www.medicalnewstoday.com/articles/how-much-saffron-should-i-take-for-macular-degeneration#does-saffron-help I asked my retinal specialist about it and he told me it wouldn’t hurt me though he didn’t know if it would help. The studies are very small. I see a retinal specialist 2-3 times a year. I want to catch any progression early. Have you looked at the benefits of eating a Mediterranean diet to slow progression? Regards, Sharon Moore patient leader
davidrodger Member
'Rapamycin' I think, is the word I was searching for. If I were convinced it might help in small dosages I might go for it, exercising caution.
1. Sharon Moore Moderator
 <inline-mention username="davidrodger" user-id="6711404"/> Rapamycin appeared effective in mice but I didn’t find studies on human subjects. It is used as an immunosuppressant so personally I would not want to try it unless under the care of a doctor. Regards, Sharon Moore patient leader
davidrodger Member
<a href='https://www.sciencedirect.com/science/article/pii/S0002944012003574' target='_blank' rel='noopener noreferrer ugc'>https://www.sciencedirect.com/science/article/pii/S0002944012003574</a> Thanks so very much for your helpful comments on saffron and on a Mediterranean diet. I do try to take a lot of broccoli. I see the American Journal of Pathology appears to be in favour of rapamycin for AMD. That is not to say I would ever definitely try it. From what I've read there seems to be perhaps little danger in ONE mg of rapamycin a day for two or three weeks. One mg only. It does seem to have much potential. You will understand the basic allure for someone like myself. I was almost blind with cataracts two years ago and the thought of losing my eyesight again troubles me so much. However, I completely agree I should talk it over with my doctor. Thank goodness our health service is free here in the UK. But I expect - IF I were ever being so bold as to try rapamycin - that I would have to try and get hold of it privately on the internet and that could pose some danger. It is hugely expensive. I would be worried in case I accidentally took more than one mg. Thank you again so very much for your very kind and helpful responses.
1. Sharon Moore Moderator
 <inline-mention username="davidrodger" user-id="6711404"/> the thought of losing our central vision does make any potentially helpful supplements alluring. I am glad you are using caution as you make your decisions. I hope you receive comfort knowing that generally speaking macular degeneration progresses slowly. Focusing on lifestyle changes can help slow the progression https://maculardegeneration.net/lifestyle-changes/ Best wishes, Sharon Moore patient leader
JUDY BOX Member
I can relate to these stories. My anxiety settled down when I realized that my ability to see, changes hourly, mostly related to light. Doctors were saying to call if anything changes but my vision changes by going outside or coming inside. So - macular degeneration effects central vision and I read the daily newspaper on my iPad at the same day, in the same light every day. If my ability to do that changes, that means something. Having a standard measure helps me relax. Colors, glare, skin color on faces, all change my ability to see clearly. And no line in my world has been straight for about 4 years. My ability to read is actually better 20/25 in US. Been getting shots every 4 weeks for nearly 2 years. I’m <a href='http://75.now' target='_blank' rel='noopener noreferrer ugc'>75.now</a>. 
1. Sharon Moore Moderator
 <inline-mention username="JUDY BOX" user-id="6618438"/> I am so glad for you that your ability to read has improved with injections. I use an Amsler grid several times weekly to monitor for changes. I hope your vision remains stable and you can keep reading. Regards, Sharon Moore patient leader 
2. Brown Eyed Girl Moderator
 <inline-mention username="JUDY BOX" user-id="6618438"/> I understand what you mean about the light making a difference. If I look at my Amsler Grid in the kitchen it looks different from when I take it over to a bright window in another room. If I see little gray patches in the kitchen, I take the grid to the window, and the patches are almost gone. It's not an exact science! Best wishes, Wendy, Patient Leader.

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