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

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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”

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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”

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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?

While in her webinar Nancy recommends the use of basic, homemade materials, Living Well with Low Vision has their training pages online. It is only a few pages and does not go much past three letter words but may be a good start.

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

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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”

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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

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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

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