macular degeneration, macular, diagnosis eccentric viewing – My Macular Degeneration Journey/Journal

Filling in the Gaps

Recently Lin steered me to a video by Sam of The Blind Life. Sam was explaining how he sees and taking exception to those representations of macular degeneration that have opaque, black blobs in the middle. Lin was interested in exactly what I see. Maybe we can expand this to what you all are seeing, too.

First of all, a little clarification. Sam has Stargardt’s Disease which is the “juvenile” form of age-related macular degeneration. He has been legally blind since probably his teens [Lin/Linda: actually, since he was 11.]. We are talking 30 plus years. Compared to Sam, I, with my paltry 4 years as a VIP, am very much the new kid on the block. My experience and knowledge cannot begin to match his.

For those who don’t yet know who Sue is, check the end of this page.

That said, it was a relief to discover that Sam with over 30 years of macular atrophy seems to see pretty much what I see. The reasons for the relief are two in number: 1) I am apparently doing this macular degeneration stuff “right” and 2) I am reasonably well assured I am not going to develop a big, honkin’ black hole in my visual field. Hallelujah!

What do I see? I have a fuzzy gray spot in my central vision. It is not opaque as sometimes it seems as if what is behind it is “bleeding through”. I often know there is something there but cannot see it clearly.

That is not 100%, of course. There have been times I have known something was there only because of sound or the perception of motion. If it is silent, stationary and/or not offering contrast to its background, I have been known to miss it entirely. Case in point, I somehow missed three jars of mayonnaise on the shelf. Three! I ordered another one from the grocery. My husband suggested I get a fifth one so I could have cinco de mayo. Cinco de Mayo; got it? [That’s a good one!] Oh, never mind. Anyway, the point is, things can disappear in the “haze” of my blind spot.

Another point Sam makes involves the concept of visual closure, although he does not label it as such. Visual closure is how your brain turns several segments of arc into a circle even though, in fact, the segments are not connected and not really a circle at all. Your brain closes up the gaps.

Sam was talking about how his brain fills in the gaps in pretty much the same way. Sam was talking about how he sees his blind spot as the same color as whatever is surrounding it. For example, the light switch might disappear and all he “sees” is beige wall.

I can get the same sort of thing going on if I look at the sky. The blue fills in and the bird I am watching disappears. If I am looking at a tree, my brain will fill in the sections of the branches that are in my blind spot. Sort of like connect the dots. That branch cannot end and miraculously reappear over there. Ergo, my mind closes the gap and I “see” the middle section of the branch. Brains are weird and amazing things.

And speaking of weird and amazing, we have had conversations with a woman whose brain filled in such a beautiful picture of an empty highway she had no idea she was about to be in an accident! Scared the bejesus out of her. If your brain is as good at filling in the blanks as hers, please be extra careful.

One more point that Sam made and then I will let you go. Although once again he did not refer to it by name, Sam is an expert at eccentric viewing. He has trained himself to use his peripheral retina very well.

I have been working on it for the past four years and it does get easier. I will use it when I need to see what is down the road that the dogs are getting so excited about. I might not be able to see details well enough to see exactly who is coming towards me, but I can see well enough to see a person and, let’s say, a large black blob that I assume is a dog. Time to move Maggie off the road. PsychDog returns!

Another time I use eccentric viewing is in typing my pages. If I put my macular focal point above what I am typing, I can pretty much read what is going on the page.

As Lin will tell you, I say pretty much because a lot of mistakes escape me. You know how they say the devil is in the details? My dears, the details are the devil when you are trying to use eccentric viewing. The peripheral retina was not designed for fine work.

So, that is pretty much how I see. Sam and I are in agreement. Great minds think alike and all that….But how about your great mind? Do you agree? How do you see? Start the conversation.

Written May 15th, 2020.

Who is Sue?

She’s my friend of 40+ years who became legally blind (20/63 to 20/80 in one eye & between 20/160 and 20/200 in the other) from advanced dry AMD/geographic in 2016. After less than a year of learning how to deal with her visual impairment both physically and emotionally, Sue has a ‘normal for her’ life. At age 66 and with advanced dry AMD/geographic atrophy, she works, attends regular exercise classes, rides her bike safely, travels locally and abroad, takes photographs, walks her dogs, kayaks, attends social events with her friends, co-workers, exercise class buddies, and adding new friends she’s been making along the way!

Next: Catching Up – December 2020

Not Your Eccentric Relative

Three and a half years ago, when I “lost” my second eye, I – an avid reader – had 30 pages left to read in a mystery novel. Not being able to see well enough to read that last, paltry 30 pages was frustrating and heartbreaking. Therefore, when a reader/member recently posted in another forum how she had lost the ability to read and was badly shaken, I got it.  Oh, yeah; I got it.

This reader/member, although shaken, reported she was going to try eccentric viewing. Hallelujah! First of all, I would like to thank her for validating our efforts here.  I am thinking she heard it here first and I am proud and honored to have passed on some valuable and helpful information. Second of all, I want to applaud her for continuing to fight.

There are ways to cope and adapt to vision loss and eccentric viewing is one of them.

Third thing I want to do here is talk again about eccentric viewing. If you are a latecomer to this blog/group or if you forget, let me start by defining eccentric viewing. In a nutshell, eccentric viewing is enlisting a part of your peripheral retina to do the jobs your macula used to do. One of these jobs is reading.

Now reading with eccentric viewing ain’t “pretty”. It involves practice and will never be as efficient as reading with your fovea. An analogy might be turning a screw with a butter knife or pounding a nail with a rock. The job gets done but it is slower and there are more failed attempts. However, some success is generally better than no success.

The first step is to find your preferred reading locus, affectionately referred to as your “sweet spot”. This is different for everyone and may require some searching and experimentation.  The one I have been using is below my fovea.  It works pretty well when I am able to work in close and be reclined – such as now when I am hanging out in bed typing on my iPad. It has not been working so well recently when I am, for example, trying to read the eye chart for the study.   That requires me to lean my head back and I have been getting a crick in my neck. Consequently I have been searching for a spot more in the horizontal plane. Play around and find a place that you like.

How do you play around to find it? Nancy Parkin- Bashizi in The Skill of Eccentric Viewing suggests drawing a clock with a star in the middle. Focusing on the star, see which number is the clearest. That may be your sweet spot for reading

Don’t be frustrated if you keep sliding off your sweet spot. Your brain has spent a life time putting your fovea on what you want to see. It is natural for it to keep trying to do that. Keep moving your focus back. Take it from me, things you are trying to see with eccentric viewing can be darn slippery!  I will get them fairly well in focus for a split second but then my eye just jumps away. I know I saw something but it did not “compute”.

This knowing what you are looking at gets better with practice as your brain learns to adapt. I saw an article about how your brain recruits parts of the visual cortex that normally handle peripheral vision tasks  to take over the reading tasks. If I can find it again I can write a page about that.

Another thing to do is practice keeping your eye still and moving the paper.  Many of the articles I skimmed suggested using an iPad or other brand of tablet so you can scroll the words past your eyes instead of moving your eyes across and down the page. Once you get that sweet spot on the page, you don’t want to lose it! [Lin/Linda: this technique actually has a name: ‘steady eye strategy.’ Here’s a good video demonstrating it.]

Does eccentric viewing work? Yeah. Sort of. I can read short, newspaper articles without magnification if I put my mind to it.  I am slow and make more mistakes than I would like but the job gets done. I can read.  And, in the end,  I guess that is all that matters

Written September 28th, 2019

Next: Rocking and Rolling

Happy Anniversary to Us!

Hi! Happy Anniversary to us! It was February 2016 we started this crazy journey. For those of you who have been around since nearly the beginning, thank you for sticking around and putting up with us! For you who are newcomers, welcome! [Lin/Linda: To read Sue’s very first page, it’s In the Beginning.  At the bottom of the page, there’s a link to In the Beginning: Revisited where you can read about how her life has changed.]

I had a déjà vu experience at the beginning of the week. It was January 31, 2016, when I went skiing and came home to a drastic vision loss. It was January 29, 2019, I went back to the same ski slope, had the same sort of glorious day on the slopes and…came home to the same vision loss I had when I went. That was a bit of a relief! [To read about that day of skiing, it’s The Perfect Storm.]

I cannot tell you I am above engaging in a bit of superstitious thinking about such things. I was relieved when nothing happened.

Anyway. What does my vision look like now ? I have a fuzzy section pretty much in the middle of things. Anything I want to focus on is not all there. I recognize people across a room by body type or other clues. I can see faces well enough to identify them from about two feet.

If I am running the dogs at the dog park, they can disappear into my blind spot at maybe 20 yards or so. That is a guesstimate. I am definitely not able to drive. There were men working on the road the other day. I did not see them until we were maybe 30 yards away. Not enough distance to stop if I had been driving at the same speed.

Reading is done but is greatly curtailed as compared to my pre-AMD rates. I can read a couple of pages of standard font using eccentric viewing. I have a terrible time reading handwriting, especially handwriting of those I do not know. Heck, sometimes I have trouble reading my own handwriting! [To read Sue’s page describing how she uses eccentric viewing, it’s How She Sees What She Sees.]

I am typing this with a standard, 12 point font. I read it back to myself and find typos at a fair, not excellent, level. That is on my iPad. If I am writing reports on the standard laptop I use 28 point font. After the office staff puts it in standard form, I proof it using my CCTV.

I am able to do most of my life skills just fine…or as fine as I ever did. I have never been a housekeeper or a cook. If I don’t want to resort to using my toys, I sometimes have trouble reading directions. I have trouble plugging plugs into outlets and, at the beginning of the cold weather, zipping my jacket can be an event.

In other words, it is not awful. A few toys, a few tricks and a little help from my friends and I am making it. This is three years into being legally blind.

Again, a reminder: I have geographic atrophy. That is “the other” advanced age-related macular degeneration. Even though we dry folks make up something like 80% of the AMD population, we get short shrift.

Why? Well, we do not have the dramatic changes in vision or the severe damage the wet people can have. We also do not have any treatments. If any one knows the term AMD and he finds out I have it, he will almost always ask about “eye shots”. Afraid not, buddy. No treatment. No cure. This girl is dry.

I gotta go, but I refer you to some pages Lin is putting on the FB page. Not everyone gets wet AMD. Most of us actually have dry.

Do I think I will get wet AMD? Nope. None of my doctors think I will either. GA is my way.

Thanks again for being with us!

[By the way, February is also AMD and Low Vision Awareness Month. What are YOU doing to make more people aware of these two important topics?]

Written February 2nd, 2019

Next: READING AND WRITING

Sue on Assignment: How She Sees What She Sees

Hi! I was quoted in a local newspaper. Even got in the picture! [Lin/Linda: That’s Sue in the white top on the right side of the photo.] Nothing earth-shattering, basically I had been thrown to the reporter by one of my hip hop instructors. “Here. Talk to her!” I gave a little pep talk about how great the dance classes are and how civic-minded the studio is to sponsor charity events. You know the drill.

Anyway, I sent the link to Lin. “Look! I’m in the paper!” Lin comes back ASKING me to write a page! Wow. An invitation to preach -uh- talk about the benefits of exercise. You remember: better health, better attitude, even an anti-dementia weapon. I took up regular exercise at the age of 25 and I have never looked back. And we KNOW there is no greater zealot than a convert.

That is not quite what she wanted, though. She wanted to know why I stand where I was standing in the photo!

Uh…it’s my spot. That is where I stand. I am pretty much always a front row girl.

Does it help you see?

Yeah. That too.

Turns out Lin was interested in how I have adapted to my vision loss. How do I keep up my activities? How I dance so well? ….uh, not that. Basically how I follow along and don’t zig when we are supposed to zag. She wanted to know if I use eccentric viewing.

Eccentric viewing is a little trick that can help us AMD types quite a bit. It is natural to put your macula on what you want to see. In “normal” people, the macula is the area that gives us the sharpest vision. It would make sense to use it. The problem is, my macula has sort of disintegrated. Nothing to focus on what I want to see.

Enter eccentric viewing. With a little (ok, maybe a lot) practice you can train yourself to use a section of your peripheral retina to see what your macula no longer can. It won’t be as sharp an image as you may have gotten with your macula but at least it is an image.

Do I use it in class? Some. My main instructor introduces quite a bit of fancy footwork. I focus on him mid-body when I am trying to figure out what he is doing. I don’t care if his waist is blurry. I need to see his feet! They come through well enough in my peripheral vision. Looking directly at his feet would leave me clueless.

I use eccentric viewing walking. If I hear a car, there is no sense putting my blind spot on the road. Unless I want to get run down, of course! If I focus above the road, I can see the car in my peripheral vision. Thus, I avoid becoming roadkill for another day.

Same thing finding the dogs. Did one of my little darlings sneak out and is now running around the yard? Looking directly at her is a good way to make her “disappear”, right into my blind spot. If I focus above her, I may be able to apprehend her.

I say “above” because one of my “sweet spots” is on my lower, peripheral retina. This is not the same for everyone. You will need to play around with eccentric viewing and find your own.

We have done several pieces on eccentric viewing. Lin can put the links in at the end or wherever. I would suggest you read them and try to apply the concept to your own lives. How else are you going to learn those hip hop steps?!?

Written November 13th, 2018

Sue is correct, we’ve written quite a bit about eccentric viewing.  Here’s the link to all the pages on our website that refer to it.  When you do a search like this, the pages are in reverse chronological order (most recent at the top)–>https://mymacularjournal.com/archives/tag/eccentric-viewing

Go back to the list of “On Assignment” pages

Uneventful Trip

Just came back from Walmart. When I checked the early days page Lin had published for today it was my first trip to Walmart as a visually impaired person. I would say what a coincidence but this girl has been known to ‘live’ at Walmart so it really was not.

Anyway today the trip to Walmart was….totally uneventful. Fine. No issues. I tell you this because in my cockeyed optImist (yes, there’s an upper case “I” in the middle), Pollyanna way I want to reinforce the concept there is hope. Yes, I have geographic atrophy with no scarring – just ‘no’ macular; my ‘divot’ just keeps getting bigger. And yes, I have no clue what it is like to be you in your situation.

However, for the great majority of us things can be OK with adaptations and the learning of skills.

I cannot drive myself to the store. My husband now parks near a cart corral. He makes sure I know we are down the line from the garden center or bank sign or whatever and then he turns me loose. I generally find my way back without incident. Do I wander around lost sometimes? Sure do. It is a matter of my not paying attention in the first place. I did that when I was fully sighted.

Absent mindedness is not a side effect of vision loss!

In the store I am using eccentric viewing…a lot. Although I carry my toys just in case, I seldom get them out. I have learned to use my peripheral vision and I am pretty good at finding things I need…and things I don’t need but really want. Got (another) cute pair of yoga pants and (another) cute scarf today.

There are times I have to be more careful and really LOOK. For example, I almost picked up hot sausage instead of mild today. If there are several varieties of something and the packaging is very similar you need to double-check. When you don’t drive often things don’t get returned. I have a chili potpie in the freezer that I could have sworn was beef. Been there for weeks. (Perhaps this is an opportunity to expand my horizons?)

I use a lot of habit learning. The credit card machine is now easy. That is habit training. I pretty much know what comes up next. Press the same buttons all of the time.

And if I don’t know or cannot see it, I ask. Sometimes I admit I am visually impaired. Those are generally the times when I know a full sighted person would have been able to figure it out and I don’t want to look like an idiot. Other times I just don’t bother to ask.

Nobody thinks the less of you if you cannot find something like the honey. Fully sighted people ask questions like that, too!

So there you go. One more page about my uneventful life. Stay tuned. Next I might write about watching paint dry!

Written May 28th, 2017

Continue reading “Uneventful Trip”

Islands of Damage

I have got about 45 minutes before I need to get ready to walk and go to yoga. Had to go to my third job today, just for the half day. My husband took me up and did errands for the morning, then we went to lunch and picked up my framed photos for the contest in the fall. I am four months ahead of the game but I had to pay extra to get them done on time once before. Not doing that again.

Lin gave me an article entitled “The Journey of ‘Geographic Atrophy’ through Past, Present and Future”. Started reading it …finally… today. First thing I read is GA is ‘end stage’ dry AMD.

I knew it was advanced AMD but never gave a lot of thought to it being end stage. Does ‘end stage’ just mean the last stage or does it mean I have almost reached the end of the deterioration? Need to read on.

There is depigmentation of the cells This is a problem because it is the building up and depletion of pigment that allows us to see. In GA you can get to look in and see choroid blood vessels with no difficulty, as well.

I have seen images of my blood vessels in my choroid. Nothing between them and the camera. Essential, my choroid posed naked.?

The article said seeing the degree of degeneration even with the new technology is difficult. That is apparently why my retinologist saw no change in my scans even though I was perceiving an increase in density of my left scotoma.

The article also said there is high variability in the location, number and shape of individual lesions. The makes sense considering my blurry spot is up and right when looking at the Amsler Grid and my ‘sweet spot’ for eccentric viewing is lower and a little to the left. In other words if I center my poor, wrecked fovea at 1 or 2 on the clock face, I can see things between 9 and 3, courtesy of my ‘sweet spot’. Other people are different, of course. Putting each fovea on the center of the Amsler grid and seeing what blurs out can help you chart your scotomata. Then, learn to work around them.

I am not sure if this is good or bad. Exception in a limited number of cases, the fovea is spared until the end. Does that mean I am actually more abnormal than I have always believed or does it mean I am at the end of the process? Dunno.

See why I feel like a mushroom???? Jeez. Need information here!

Geographic? It appears early researchers (and by ‘early’ I am referring to the 1970s! Research and discoveries are traveling at light speed and there is no reason to lose hope something else helpful will be discovered soon) thought the sharp demarcation of lesions like ours looked liked borders of islands and continents as drawn on a map. That is where geographical came from. We have islands of damage in seas of healthy tissue.

Ok. Gotta run. There is lots more in the article though. Will let you know. Continue reading “Islands of Damage”

The Blind Spot – Part 1

Tomorrow I go for another OCT scan. That is optical coherence tomography. It is the one you look at the cross and the machine goes click, click, click vertically and takes pretty pictures of your retina.

I think I told you I think the scotoma in my left eye is more opaque. I think it is called density but I cannot find any information on it.

I am not understanding why they don’t publish this stuff somewhere. How are you supposed to understand what is happening to you if there is no information?

I have been told AMD vision looks like gazing through glasses with Vaseline smeared on them. Nowhere have I heard things go black in the middle. However, my scotoma is darker and things are not ‘bleeding through’ as well. Is this natural progression of the disease?

I feel like a mushroom. Keep me in the dark and feed me bullshit.

Did a fair amount of research trying to find something on scotomata. That is the plural. Like stigma and stigmata; you know. Scotoma is Greek for darkness so that is not very encouraging.

There are several different types of scotomata. The one we with AMD have is a central scotoma but there are also ones that obliterate half the central visual field, hemianopic scotomata, and peripheral scotomata. Pareacentral scotomata are near the central vision. Bilateral scotomata occur as the result of a tumor impinging on the optic chiasm. This is all info from primehealthchannel.com.

medical-dictionary.thefreedictionary.com talks about absolute scotomata in which the light perception is totally lost. There are a number of articles online that come up when you google AMD and absolute scotomata. It is obviously possible, therefore, for an absolute scotoma to be the ‘end of the line’ for macular degeneration. How delightful.

On a positive note, many of the articles that mention absolute scotomata are about teaching people how to use eccentric viewing. They are generally pretty positive about their results. Once again there is hope for navigating around this mess.

If somebody actually TELLS me something about what is happening, I will let you know. I, for one, do not think you need to be treated like mushrooms. In return, if you know the answer, let me in on the secret!

And in other news, I am going to go to Mom Prom! The person who first offered to get me there apparently ‘thought better’ of it and never firmed up the arrangements, but I have another offer. Not really upset at the first person but I think people need to be honest with themselves before they open their mouths. If they are not going to follow through, don’t volunteer!

I also got the invitation to speak at the summer camp for blind and visually impaired high school kids. No clue what I am going to say. These kids have more experience with vision loss than I have. Any suggestions?

Getting late. Talk to you later.

  • About the title: There’s a GREAT YouTube channel called The Blind Spot that we highly recommend.  The title is not about that, it’s that scotomas are often called ‘blind spots’.

Continue reading “The Blind Spot – Part 1”

Your Fuzzy Spot

I saw something – right now don’t ask me what; short-term memory could stand a little work – that reminded me about eccentric viewing. Did a bit of web research on that. Thought I would share it.

Eccentric viewing is a way for those of us with central vision loss to see better and to even read better. It involves learning how to use points on the retina to do the jobs your macula normally should do. You may have heard these spots on the retina referred to as preferred reading loci. [Lin/Linda: outside the US you will hear about Steady Eye Strategy which is sometimes described as being the same as eccentric viewing.]

So basically eccentric viewing is looking at the world a bit off-centered. No matter how cock-eyed you may consider yourself, looking at the world cock-eyed takes a bit of practice. We are naturally inclined to put our maculas right on what we want to look at.

Unfortunately, with AMD, that generally means what we want to look at is exactly what blurs out. Time for a new plan. Time for eccentric viewing.

Nancy Parkin- Bashizi published her webinar on eccentric viewing and how to go about learning the skills. She said you should probably consider eccentric viewing if reading is become difficult for you because of your scotoma. Your scotoma is your blind or fuzzy spot. She also said the three steps in learning eccentric viewing are finding your preferred reading locus, learning and practicing how to use your preferred reading locus and learning to hold your eyes still and instead move the paper. Right now I am keeping my gaze fixed slightly above the line, to the right. To read what I have written I scroll the line on the tablet. I don’t change my gaze.

All of this stuff is in the webinar. Nancy spells out a way to find out where your preferred reading loci are. She points out each of your eyes contains a preferred reading locus, but don’t expect them to anywhere near correspond to one another. You did not expect this to be easy; did you?

There are commercial products. There is one called MagnaFlyer for which they want $250. Ouch. Once again I am not recommending this. Remember my favorite price for anything is free. Also, I know nothing about the program. If you have been through this program and want to critique it, let us know.

Those of you in the U.K. may have a leg up on us here in the States. According to WebRN-MacularDegeneration.com and their page on eccentric viewing, your Macular Society is a big proponent of eccentric viewing. The video on this page is very informative. The video also talks about Visibility, an organization that appears to be very active in supporting Glaswegians with vision loss.

There is a list of eccentric viewing trainers in the States pretty much right under the Macular Society info. Could have sworn WebRN-MacularDegeneration was British. Dunno. Also, found dozens of resources on AMD listed as WebRN-MacularDegeneration posts. Maybe another good source of info?

O.k. Gotta go. Way over my 500 words. Bye!

written April 5th, 2017

Continue reading “Your Fuzzy Spot”

Good Thought, Bad Thought

Back again in the same day. You do know I am ridiculously hard to get rid of; don’t you??

This is the page I was going to write before my ZoomText, inelegantly put, took a dump. Now I will write it.

I went to see my local retinologist Monday. Great guy. He is good. His kids are good. I feel I see him enough I get to inquire about the boys.

I also feel like I am becoming ‘friends’ with my tomography tech. We chat. I asked about the enhanced depth tomography. He had the capability with his machine and since it would not cost any extra, he ran it on me. The pictures were pretty. I saw my optic nerve and my ‘divot’, geographic atrophy, but did not have the training to see much else.

The tomography tech pointed out two veins in my choroid. They were old veins, not new ones. It is sort of bizarre to realize how relatively deep the hole is in my macula, but that is a part of the definition of geographic atrophy; the damage is choroid deep.

Neither my local retinologist nor I believe I will convert to wet AMD. He has put me back to twice yearly for my check-ups. It was my understanding, and my retinologist confirmed, that wet developed as an adaptation (sort of) to the dry form of AMD.

The way I understand it, when the RPEs and the photoreceptors are not getting enough oxygen and nutrients they send out the SOS . They need supplies! They are starving! The body responds by establishing new supply lines in the form of new blood vessels. The only problem is these vessels are inferior. They break and the bleed. Problem not solved. The fix does not work so well.

I got the impression I am back to twice yearly visits – and he does not think I am a candidate for wet AMD – because I don’t have a lot of macula left. Now he did not say that. It was an impression but I am usually pretty good at those. I don’t think there is much for my body to try to save anymore.

Good thought and bad thought. Or actually bad thought and good thought. Bad thought that I may have reached this level so quickly. Good thought: could the slide be over? Will I soon stop losing vision?

Now, cheating my sweet little patootie off and using eccentric viewing and guess work to the max, my vision tests as 20/50. Am I really 20/50? No, but I cheat well. And they know I cheat, by the way. I tell them every time.

If I can cheat and test at 20/50, that means I have decent functional vision. I can do a lot with that. Not so bad.

So why all the horror pictures of visual fields that are 90% bleach white with decent vision around the edge? If this is a ‘central vision loss’ problem, what is the definition of central vision?

No clue, but Lin and I are on the hunt. Let ya know. Continue reading “Good Thought, Bad Thought”

Highlight: Is there any way I can learn to better use what vision I have?

It’s Linda and today I have AMD.  Let me explain.  I want to share what I know about Eccentric Viewing which is a way to maximize the peripheral vision that you do have in order to read text and see faces and objects when robbed of one’s central vision.  I do not have AMD, that’s Sue. Because my Dad had it, I know that I have a 50/50 chance of developing it plus I have a few other risk factors. Having gone through the experience of Sue developing AMD & and doing research for the website, it is a much more real possibility that I will develop also AMD.

I’m simulating AMD by putting dots on my eyeglasses where my central vision would be

I decided to do a mostly unscientific experiment. I cut out dots from the top of a sticky note and pasted them on my eyeglasses.  I had to look in the mirror to find the right positions because my blind spots would not in the exact center of my glasses.  My spots are not perfectly round nor are they exactly in the middle because that would be how it is naturally.  The actual blind spot on the macula of the eye would be tiny but I had to represent it as it would appear in my visual field.  At first I thought that this would not be an accurate simulation because my glasses correct my vision but I know Sue and others wear corrective lenses to maximize the remaining vision (more about that below).  I’m sure this is not exactly accurate but I think it’s the best I can do.

Two observations right away: 1) I’ve developed a queasiness that I can’t explain but I’m guessing it is partly a physical reaction to the vision changes but also an emotional reaction to experiencing AMD.  As for the physical issues, I have serious astigmatism so my eye doctor adjusted my glasses and I’m guessing that some of the most extreme corrections are in the peripheral vision areas and that is not where I’m used to looking; 2) I found it hard to take a selfie because to do this, I had to look straight ahead.  I did much better navigating in the house probably because it is familiar.

On to Eccentric Viewing.  AMD robs us of our central vision but the peripheral vision is spared.  You may lose the ability to see text or a person’s face if you look directly at it or them but you should be able to look to the side or above or below the center and make out some of what’s in your peripheral vision.   You can learn ways to maximize the vision that remains.

Eccentric vision is one technique to do this.  It takes some practice but you can teach yourself.  The diagram below defines the Preferred Retinal Locus (PRL) which is the place where your peripheral vision is the best.  For example, as I simulate AMD wearing the dots, at first I moved my head around (not the best way) & I found that with my left eye (right eye closed) my vision is best on the right side of my visual field. With my right eye (left eye closed), my PRL is to the left of my visual field.  That doesn’t help me with both eyes open and looking straight ahead.  If I had AMD in both eyes, I might choose to read with the eye that has the best PRL. Has that been the case for any of you?

ecc_view_dia_txt
Click on the image for an article with more details.

Click here for instructions on how to teach yourself Eccentric Viewing.  As I followed the instructions, I found that it was hard to keep my head still as they instruct.  My first reaction was to move my head left, right, up and down not my eyes.  I’m sure that would change with practice.

Click here for another article about Eccentric Viewing.  It explains some of the science behind the technique.  It also says that the biological task of this way of viewing takes some time. They say it becomes second nature with 6 sessions with a certified low vision specialist and practice at home.

Here are some more articles:

Click here for an article that explains more about PRL (Preferred Retinal Locus).

Click here for an article on Steady Eye Technique (also called Steady Eye Strategy) which basically talks about maximizing the vision you have.

Click here for a great article that talks about both Eccentric Viewing and Steady Eye Technique as they are used together.

Click here for the definition of Eccentric Viewing through the details of a study done on reading with peripheral vision.

My thoughts after several hours of ‘having’ AMD:
  1. I never doubted that Sue was right in that dealing with low vision is tiring.  Everything that I tried to do took much longer.
  2. I was reminded that our ability to see things is not only a function of the eyes but a function of the brain.  When we change input to the eyes, the brain will try to adapt. I had an experience of this when I tried contact lenses where one eye had a prescription for near vision and the other eye for far vision. It didn’t work, my brain did NOT cooperate. They can do that with Lasik surgery but I wouldn’t recommend it unless you have tried it with contact lenses first.
  3. I can see that Eccentric Viewing/Steady Eye Strategy is very useful but I can also see that much practice is needed.
  4. I’m going to try to talk to my eye doctor about this but I suspect that making a prescription for eyeglasses AFTER central vision loss is different from when a person can use the whole visual field.  That might mean that wearing eyeglasses that you had before the vision loss is not a good idea.  If you’ve had this experience, please leave a comment or contact me directly.
  5. I can see how important things are like proper lighting and good enlargement of text.  I had to move a lamp closer to my computer and had to move it several times to avoid glare on the computer screen.
  6. I can take the dots off of my eyeglasses for which I am TRULY grateful.  My heart goes out to each and every one of you who cannot.

If you have learned or tried to learn any of these techniques, we’d love to hear about your experiences.  You can post a comment here or contact me directly at light2sight5153@gmail.com

Buyer Beware

We have a new teacher at school. Someone told her I have Macular Degeneration and she dropped me an email. It seems the job she had before earning her teaching degree was working for an eye doctor in Jersey. She assured me this man does amazing things with prisms. He was getting wonderful results with Macular Degeneration.

OK. Call me a spoil sport. Call me cynical but whenever a treatment comes out and it is described as amazing and wonderful, the red flags unfurl. “Danger, danger, Will Robinson!”

Now, I do not mean to say this poor doctor in Jersey is a quack. I do not mean to say he is a scam artist. What I mean to say is a little healthy skepticism is a good thing. Those of us who are losing our vision are all a little desperate. We all – or pretty close to all  – want to see again. That makes us vulnerable.

Do NOT – and I repeat do NOT – go off and hand over your life savings to someone claiming he has THE cure for Macular Degeneration. Do your research first.

I started some research. There really was not that much done by people I would trust without a lot of question. By that I mean I did not see many government or university studies. A lot of the papers were written by people who had a proverbial dog in the fight. I steer away from those.

In truth there was a lack of studies in general. In 2012, for example, Acta Ophthalmologica Scandinavia tried to put together a meta analysis of studies on AMD and prisms and only came up with nine papers. For those who are uninitiated, a meta analysis puts together the results of several studies and reanalyzed the data for one, big study.

Oh, by the way, Acta Ophthalmologica found positive effects from prisms, but they were not ready to give out any gold stars. They decided more study was needed.

I also scanned a research paper from 2015. This paper theorized the location of your scotoma – read “big, fuzzy spot through which you don’t see that well” – dictates where your preferred retinal loci may be. For preferred retinal loci (PRL) read “retina sections you like to use to try to see”. The PRL is where in your eye you try to move the imagine so you can sort of see it.

So, moving on from definitions, it appeared to me their theory is thar sometimes the PRLs in the two eyes can be located places that make it hard for the eyes to work together. That is, your left eye may be using eccentric viewing that puts the imagine above the macula while your right eye is trying to use eccentric viewing to focus the imagine to the left of that macula. Your eyes end up trying to go two directions at one time. The belief is that prism can be used in each eye to independently send the image to the preferred retina loci. The prisms would redirect the image instead of you going cross eyed.

Again, just a theory. We do not have a lot of proof on any of this.

Bottom line? Prisms appear to have promise, but not a lot has been proven yet. If you decide to try prisms, use common sense. Deal with people you know. Pay a fair price. It might help, but it also could hurt you in the wallet.

article

http://onlinelibrary.wiley.com/doi/10.1111/j.1755-3768.2011.02336.x/full

http://www.ncbi.nlm.nih.gov/pubmed/16767185

https://books.google.com/books?id=huC5XK77SvYC&pg=PA119&lpg=PA119&dq=Acta+Ophthalmologica+prisms&source=bl&ots=9sJ2HxHtqv&sig=2zuWxaa2C6Oh3Ydzbw0pq6UUOTc&hl=en&sa=X&ved=0ahUKEwin5MD46qnMAhVD2SwKHRKdA5IQ6AEIUzAF#v=onepage&q=Acta%20Ophthalmologica%20prisms&f=false

http://www.allaboutvision.com/askdoc/eyeglasses.htm

Glasses for Macular Degeneration

Welcome!

June 2023 There’s an announcement that since Sue has not written any new journal pages for some time, the site has been archived until we can decide if the work necessary to make sure all information is accurate and up-to-date can be made. In the meantime, you’ll get some pages ‘not found’ or ‘private’ until that decision has been made. The emphasis for several years has been on the Facebook group.

You are here to follow the journey & misadventures of a woman named Sue who became visually impaired with Age-Related Macular Degeneration (AMD or ARMD) seemingly overnight.   Join in the tears and laughter. Join in the discussion. Learn more about Age-Related Macular Degeneration. Find resources for your own journey or that of someone you know.

We’re going on a bear hunt….can’t go over it, can’t go under it, got to go through it.

Sue is a psychologist trained in Dialectic Behavior Therapy (DBT) and is using it to help her cope with this vision loss. Her trusted and invaluable friends bring computer, research and occupational therapy skills to this endeavor. Yeah team! We hope you benefit from the fruits of our labors.

We are not offering free psychological therapy.  We are not medical people.   Please read the disclaimer.

This website is divided into 4 parts:

  1. If you have just been diagnosed or if you are beginning your research, here’s a place to start in I Have Macular Degeneration…Now What?
  2. Sue’s journal pages which are like chapters in a book
  3. Highlights & News which are basically blog posts
  4. Links to helpful resources (still under construction)

For those of you who aren’t familiar with websites or blogs like this, to ensure that you will be notified when information is added to the website, you must subscribe by email.  On a laptop & most tablets, you’ll find the place where you can do this in the right-hand column.  On a smart phone, you will find it below the content for the page that you are looking at.

We are still learning, we don’t know everything about this challenging disease.

Courses Coming Soon!

Thanks!

Thanks to Lesley B., Sally R., Dave M. and Gerry M. for going through the website looking for links that didn’t work, things that didn’t read well and typos.  We couldn’t have done it without you.

 

A Human Doing

Moving ahead in time again, I found myself having taken leave of  ….a turn of phrase makes me want to say ‘leave of my senses’ even though that is not how I was thinking when I started this sentence. But maybe I did. People (hello, Lin) told me to pace myself and that this was going to be a marathon and not a sprint, but I am a go-er and a do-er with the proverbial motor in my butt. I do not hang well.  I was out of work and pretty much grounded. I am happiest when I have a project so – curse it – I and my vision loss are going to be my project.

I am a go-er and a do-er with the proverbial motor in my butt.

I had made an appointment with my optometrist originally hoping that something as easy as a new pair of specs would solve the problem. I kept the appointment even though I was not holding out a lot of hope for a ‘spec-tacular’ rescue (sorry, could not help being goofy there).  I got a few things out of the encounter. One was the information that while I thought my eyes had suddenly and inexplicably self-destructed, the problem was actually part of the continuing process of degeneration.

The center red dot represents the macula. Each consecutive ring from the center to the periphery represents another drop in acuity level.

According to my optometrist, the drusen had reached the center of my left macula. She explained the macula is set up like a dart board. There are greater values in the middle where acuity/vision would be a 50. When the drusen reached the center of my macula, I lost my ’50 points’ vision.  Add to that a progression in my right eye and I was up the proverbial creek.

 

 

Eccentric viewing was a skill my optometrist thought I should learn.  Now, there are a number of people in my life who have always thought my views were eccentric, but that was not what she was talking about. Apparently, eccentric viewing is using the intact – but not as finely tuned – cells of the rest of the retina to do the jobs of the macula. Many people with central vision loss learn to read with their peripheral vision. Sweet trick if you can master it. I think I need Eccentric Viewing 101. I have been practicing looking out of the corner of my eye or focusing just a bit above and to the right of what I really want to see. Sometimes it works and sometimes it doesn’t. Apparently, this is going to take more than a couple of days to master.

My optometrist also suggested I wait until the Bureau of Blindness and Visual Services (BVS or BBVS) appointment to pursue low vision services. Since I was – and am – planning on going back to work, there was a chance this organization would help me with some of the expenses of equipment.

Wait. Patience. Really???????? You don’t know me too well, do you?

I had already contacted the Bureau of Blindness and Visual Services, a part of the Office of Vocational Rehabilitation (OVR). I had an appointment set up with the vocational specialist they had assigned me. When I first spoke with my BVS counselor I had warned him I am not a patient person. In fact, I am a doggedly persistent pain. I suggested he give me an assignment. It would be self-defense for him and would give me something to do. My assignment? Get copies of my eye evaluations and put together some samples of the work I had done and that I wanted to return to. Yes. I was on the job.

I warned him I am not a patient person. I told him to give me an assignment and he did.

Meeting with my BVS counselor, I signed the usual mess of legal forms and found out I was going to get three different services. One would be low vision support, one would be technology and one would be ‘habilitation services’…whatever that is. I am hoping it has something to do with lighting.

I would get low vision, technology, and rehabilitation services.  Let’s go!

Written February 2016. Reviewed September 2018.

Continue reading “A Human Doing”

Resources

June 2023 There’s an announcement that since Sue has not written any new journal pages for some time, the site has been archived until we can decide if the work necessary to make sure all information is accurate and up-to-date can be made. In the meantime, you’ll get some pages ‘not found’ or ‘private’ until that decision has been made. The emphasis for several years has been on the Facebook group.

2/14/2022 Because of the rapid and constant growth of our Facebook group, I cannot keep this list updated.  I have a large amount of information available in the Facebook group in Guides which are like chapters in a book or lessons in a course. Plus, in 3 years, the amount of information in the posts and comments is quite substantial. I recommend that you join us there where you can get the information and the support to help you in your journey.  Thanks for understanding. Hope to see you there! Lin/Linda…
I’ve added some pages from that group that might be of interest to you.

Frequently Asked Questions

Click here for the list of Frequently Asked Questions from our Facebook group.


AREDS2-based Supplements

There are several pages on the site that explain what AREDS2 means and who the AREDS2-based products are for. Click here to go to a list of articles.

AREDS2-based Supplements With 0 or 25mg of Zinc

Click here for the list.


Navigating

There are a lot of links here.  I’ve set up this page so that when you click on a link (words that are underlined & in blue or green), a NEW tab will open in your browser and this page STAYS WHERE IT IS.  When you are done with the new page you opened, just close it.  You do NOT need to use the back option.  If you click on a link and the new page replaces this one, I’VE MADE A MISTAKE so please let me know by sending me an email at light2sight5153@gmail.com.  Let me know exactly which link or links do not open a new tab or window.

Errors: If you click on a link and you get a ‘page not found’ error, please let me know by sending me an email at light2sight5153@gmail.com.  Let me know exactly which link or links do not open a new tab or window.

Additions: If you have a link you’d like to add, please email at light2sight5153@gmail.com.


Topics-click below to move to a topic

Links We Like

  • Click here for a GREAT resource where you answer some simple questions and you get a customized guide based on your responses
  • Click here for a great glossary
  • Click here for Low Vision Resources: A List of Lists (such as 8 ways to slow AMD, 15 tips for family and friends, etc)
  • Videos
    • Click here for several videos
    • Click here for the UK Macular Society’s Say Hello to Mac
    • Click here for one that uses illustrations and animation (explains how wet AMD progresses and how the injections work)
  • Click here for a description of dry vs. wet AMD (we are not recommending any products in this article)
  • Click here for an article about depression after diagnosis
  • Click here for a very comprehensive page about wet AMD
  • Click here for a very comprehensive page about dry AMD
  • Click here for a FAQ (Frequently Asked Questions) that answers a long list of questions such as ‘will resting help my eyes?’, ‘Can I see for myself if my retina or macula shows any signs of damage before I have symptoms?’, ‘why don’t new eye glasses help?’, ‘what is meant by degeneration?’, ‘is a macular hole the same as macular degeneration’, ‘I have had dry MD for years. Does this mean I’m going to get wet MD too?’, ‘No one else in my family has MD. Why did I get it?’, ‘can drusen be treated?’, ‘I have changes on the Amsler Grid, does this mean I have MD’, ‘I have Wet MD but my Doctor says there is nothing he can do or no treatment available. Why is this?’
  • Click here for a short introduction to stems cells, what they are and how they can be used.

See what vision is like at the various stages of AMD

Click here to find ways to see simulations of what vision loss due to AMD is like at various stages.


Glossary

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Websites devoted to AMD and Other Forms of Macular Degeneration

listed in no particular order

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Websites containing information about AMD and Other Forms of Macular Degeneration

listed in no particular order

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Support

I’ve not been able to verify if these are kept up to date. Let me know if you find that they are not or if you have one  you’d like to add.

Message Boards including ones from
By postal mail

I don’t know if these are still accurate.

  • Association for Macular Diseases
    210 E. 64th Street
    New York, NY 10021
    (212) 605-3719
    – Offers education and information on macular disease through seminars, newsletters, and a hotline. Offers counseling to patients and their families.
  • Macular Degeneration International
    is now a part of Foundation Fighting Blindness
    Toll Free Helpline 1-800-683-5555
    EMail: MDInfo@blindness.org
    – Provides support for people affected by inherited macular degeneration including Stargardt’s disease.
Start Your Own
  • Vision Support Group-download video presentations  This group provides free information and support through presentations to groups of senior adults affected by macular degeneration and related retinal diseases.  You can join & get access to their materials so you can use them in your own group.
On the phone/telesupport

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Where to find services

  • In the US: click here to find a low vision center, retina specialist, state agency, ophthalmologist
  • In the UK: click here to support services (listed on the right side of the page) such as skills for seeing, counseling, access to treatment…and more
  • In the US: click here to search for a wide variety of services (more than the link above)
  • In Australia: click here to find an ophthalmologist and optometrist
  • Worldwide: click here for resources worldwide

Resources for Students

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Books and reading materials

Specific Titles

Sources of Books

Formats: Braille, large print, e-book and audiobooks

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Videos

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Personal stories of living with AMD

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Online newsletters

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What is AMD?

Wet Form
Dry Form
How fast does AMD progress?
  • A good article about how difficult this is to answer
  • Great video that explains why early detection is important especially when detecting the change from dry AMD to wet

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What is Stargardt’s Disease?

Also called Stargardt’s Disease (SD) or Stargardt Macular Dystrophy (SMD) or Juvenile Macular Degeneration (JMD), it’s an inherited, juvenile macular degeneration. The progressive vision loss associated with Stargardt disease is caused by the death of photoreceptor cells in the central portion of the retina called the macula.

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The Science Stuff

Role of RPEs

Geographic Atrophy

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Symptoms

Charles Bonnet Syndrome/Visual hallucinations

Other problems with vision & AMD

  • problems with visual acuity, photostress, blindspots, color vision, sensitivity to light, depth perception
  • eye problems that have similar symptoms as AMD:

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Risk factors

Age

  • Age is a large factor but can start earlier
  • Much less common are several hereditary forms of macular degeneration, which usually affect children or teenagers. Collectively, they are called Juvenile Macular Degeneration. They include Best’s Disease, Stargardt’s Disease, Sorsby’s Disease and some others.  See Stargard’s Disease section above.

Diet/nutrition (working on this section)

  • diet low in various nutrients & high in others have been linked to AMD.
  • See Nutrition and Vitamins/Supplements under Self-care/self-maintenance below.

Race

Gender

  • AMD more common in women perhaps because women live longer than men

Uncontrolled high blood pressure

Uncontrolled high cholesterol

Smoking

Blue Light

Eye Color

Aspirin & other medications

Other possible causes

  • Biological Process in Wet AMD – some evidence that the photoreceptors are starved by the lack of food (oxygen & nutrients in the blood) and the growth of blood vessels is to compensate for that.

Connection between AMD and Alzheimer’s Disease

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Treatments

  • FDA approved options in the US, injections, implantable telescopes, laser treatment (also outside the US)
Injections for Wet AMD
Telescopic implants
Are there new treatments in the pipeline?
Vitamins (see Self Maintenance/Self Care section below)

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Research/Clinical trials

 

How can I become a part of a clinical trial?

  • A list of sources of information about clinical trials and how to find out for you to participate in.
  • You can search for clinical trials from the links above
  • There are registries where you sign up and enter information about the status of your eyes.  Researchers will use this information to find people that match their research and contact you.  Click here for more information about these registries in the US and elsewhere

Gene Therapy

Bionic Eye/Retinal Implants

  • What is a bionic eye?  It’s also called retinal implant or retinal prosthesis.   Implant is put in retina, camera worn by person sends image to implant which stimulates optic nerve
  • Click here for overview of retinal implants including videos of how it works & interviews with people who have them.
  • March 21, 2016 UK Bionic eye being tested
  • Here’s an article about one being developed at Carnegie Mellon institute in Pittsburgh, PA.

Nutritional Supplements

  • See Vitamins/Supplements section below.

Stem Cells

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Coping with low vision

Low Vision Aids

Wearable Technology

  • coming soon!

Suppliers of low vision aids

Financial Help

Sunglasses

Lamps

Transportation

  • A website for the US where you enter your zip code and transportation options for your area will be shown.

Bioptic Driving

Depression

Checking vision

Amsler Grid

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Self maintenance/self care

Low vision rehabilitation

Vitamins/Supplements

Nutrition

Exercise/Activity

 


More to come, you can check out these posts now

Video: Overview of Assistive Technology for People with Low Vision

Highlight: How do I use Zoom for Apple products?

Highlight: What about Apple’s accessibility features?

News: Top 10 Low Vision Aids for AMD

 


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