Category: Testing

What’s Visual Acuity?

The topic for today is visual acuity. A reader/member was in contact with someone who read one of my posts in another forum. That someone wanted to know what my visual acuity is that I could still ride my bike. The answer to that was “I don’t know. Let me get back to you.”

Why don’t I know? My vision is measured monthly when I go for the clinical trial. They are tracking it. I am not. Frankly, watching the numbers worsen would be too depressing and anxiety-provoking.

Ignorance can be bliss and I would rather concentrate on my abilities rather than my disabilities. No use rubbing my nose in it every month.

Also, while, yes, my vision keeps getting worse, the measurements fluctuate a bit. Some days I am “on”. Either I am able to hold the letters in my sweet spot for an extra half second or I am guessing well. Some days I am “off”. Visual acuity is a psychophysiological process and some days the “psycho” part takes more of the load than others.

So, that said, my visual acuity in my better eye is 71 and in my worse eye it is 52. Huh? Not the usual scores we see. That is because those are letter counts or simply visual acuity scores. Letter counts are used in research.

As I pointed out in a page on why I did not get into the stem cell study, my score reflected a moderate loss. My good eye is at the top of the range and my bad eye is at the bottom of the range. How I know this is I found a nifty little chart entitled Visual Acuity Ranges and Visual Acuity Notations published by Precision-Vision.com.

This chart compares several different ways to measure visual acuity. One is, of course, the Snellen chart. In the States that notation is 20/ xxx. The 20 is 20 feet and the xxx is the distance related to your acuity scores. Using my chart, my good eye is between 20/63 and 20/80 meaning I see at 20 feet what “good” eyes see at 63 feet. My bad eye has an acuity score between 20/160 and 20/200.

There is the decimal scale included on the chart as well. If you have been perplexed when somebody said her vision was 0.4 for example, the translation to Snellen is 20/50. According to Michael Bach and his Visual Acuity Cheatsheet, decimal acuity and Snellen numbers are identical. All you have to do is calculate the fraction. In other words, for my worse eye I have a Snellen score of 20/ 160. 20 divided by 160 is 0.125.

Looks to me like they just wanted to confuse the issue, but what do I know? Well, for one thing, I know the definition of MAR sounds very confusing to someone who is not a hard science person. Damien Gatineau gives the definition of minimal angle of resolution (MAR) as “the visual angle that must under tender two point sources to be resolved on the retina.” Alrightee then. In layman’s terms it sounds as if it means something like how much “space” has to be between two points for the person to see them as two separate points. Interesting but I don’t think we need to worry about those. They are also generally expressed as decimals.

So that is what I have learned about acuity measures. In my case 20/63 and 20/200 still leave “room” for my doing many things, including riding my bike. Maybe in your case, too?

Written August 14,2019

Next: SHOPPING

What’s Visual Acuity and How Do I Explain Mine to Others?

When we discuss the effects of AMD, we talk about two main aspects of it: visual acuity and visual impairment.  Let’s talk about visual acuity. Later, I’ll have more about how AMD can affect one’s vision in terms of blurriness, distortions, and blind spots.

What is visual acuity? My online dictionary defines it as, “Sharpness of vision, measured by the ability to discern letters or numbers at a given distance according to a fixed standard.”  In the US, the “fixed standard” is the Snellen Chart where you are asked to read rows of numbers that are placed in front of you.

Snellen Eye Chart. Click on this image to get a printable eye chart with instructions.

This is a Snellen Eye Chart. There are other methods but this is the one most often used in the US.  When you see this chart at the eye doctor’s office, you won’t see the 20/20 through 20/200 marks on the side.  Click here or on the image to the left to get a bigger image that is printable and comes with If instructions for your use.  Your numbers will be determined by the smallest line on the chart you can read.

To learn how the chart is used, click here for a good explanation of it.

This may help you explain to others how your eye doctor came up with numbers like 20/20, 20/40 all the way up to 20/200.  A different chart is used for 20/400 and up.

If your visual acuity is To be considered legally blind, your vision needs to be 20/200 or worse, which means you can read an eye chart at 20 feet about as well as someone with normal vision could read it at 200 feet.Click here to go to an article that has images of

https://www.buzzfeed.com/hikaruyoza/20-200-vs-20-20?utm_term=.xkRMrGgOe#.bnyOdyBn3

Common Questions

Can each eye have different visual acuity? Yes.

If I have AMD, can I have 20/20 vision but distortions?

What does it mean if I’m said to be ‘legally blind’?

 

 

 

 

 

 

 

 

1) this webpage shows pictures of common sights with a way to compare 20/20 vision to 20/200–>https://www.buzzfeed.com/hikaruyoza/20-200-vs-20-20…

2) the smallest line that can be read on a Snellen Eye Chart—>the image here.

https://gizmodo.com/how-the-20-20-vision-scale-works-1492129290

Diffy Cults

Just getting a quick page or two written before I am off. That is ‘off; as in ‘off on vacation’ not as in “she is a little bit off.” That happened quite a while ago.

Still hoping to get my loaner CCTV before we leave but I doubt it will happened. A friend of my husband’s is watching the house. He promised to take delivery and pack up my machine to send for repairs.

I am still hoping against logic that this will all be settled by the time we get back. Cockeyed optimist; so shoot me.

Of course, I have found several interesting web articles now I don’t have a lot of time to go over them and no CCTV. Since I don’t have my machine to put them on to read, I put one on NaturalReader. Let the iPad read to me. [Lin/Linda: to read all about NaturalReader, go to Sue’s page Let Me Read to You.]

Some of the pronunciations are a bit ‘off’ as well. D.O., doctor of optometry, comes out as ‘odd’. I guess she calls them as she sees ’em!? She? It is a female voice on my machine. Not sure if I could change it if I wanted. Never tried.

Found something called Practical Guidelines for Treatment of AMD. The pamphlet says with all of the rapid advances in potential treatments for AMD it makes it “diffy cult” for practitioners to know what will be “Benny Fish All” to their patients.? Gotta watch those “diffy cults”. Not to mention that Benny Fish All. OK, OK, so I am easily entertained.

The article suggests doctors are not proactive enough in the early stages of the disease. It suggested something like 78% of AMD patients have substantial, irreversible vision loss already at the time of the first treatment. This includes 37% who have become legally blind by the first treatment. Yikes! It goes on to state not all drusen are a result of AMD and doctors may hesitate to make the diagnosis on the criteria of drusen alone. There is also the patient variable involved. Will the patient believe she is losing her sight and do something if there is no acuity loss? Will she freak? Stay tuned….

The article suggests using dark adaptation problems to emphasize there is a real problem even when acuity seems just fine. It quotes statistics dark adaptation is an excellent predictor of age-related macular degeneration and is, indeed, 90% accurate!

In other words, if you know someone who has a lot of problems with dark adaptation, suggest they be checked for AMD. There is evidence problems with dark adaptation can be detected up to three years before the disease can be detected through clinical measures.

Later….There is a lot more in that article, but I have to sign off here. Too much over 500 words and I turn into a pumpkin. Watch out for those “Diffy Cults” and if you run into “Benny Fish All” say hello for me. After all, he is the kind sort. Me, I’m going to crank up my loaner CCTV. It came today!

Written October 27th, 2017 Continue reading “Diffy Cults”

Secret Passages in the Eyeball

Back again. Chatty sort, ain’t I? ? I really thought I was done for awhile but I keep finding things; ya know? If (should I even use the word ‘if’?) you are tired of hearing me chatter, please write a page! We are anxious for more offerings. [Lin/Linda: if you haven’t read the pages by our guest authors, click here to see what we are talking about.]

Back to the topic at hand (I am not only chatty, but I go off on tangents, a lot of tangents??☝ ) the most recent thing to land in my inbox is a Medscape article Lin sent me. We are back to the stem cell research!

This article uses a lot of the concepts and vocabulary we have introduced over the months. I will review as we go along – I don’t remember it all myself! – and Lin might help us out with some links to previous pages. Pretty please and thank you.  [I think the best place to learn about stem cells is a short YouTube video.   Also, check out Sue’s early page Research.]

I am signed up for a Janssen Pharmaceutical study with stem cells. Guess who did this study? Do you ever feel LEFT OUT? Once again, I would love to know how to get on the A list for these things. Not sure all the places the study happened, though. One place was Kentucky. Maybe I was a ‘geographic undesirable’? I will have to do a little research after hip hop. (Some things do take precedence!?)

OK. Here we go. I looked up PRELUDE, etc and got routed to Clinical trials.gov. It is only going into phase 2 but the good news is they are recruiting. The better news is they are recruiting at Mid Atlantic Retina, Regillo’s place. Now I am getting stoked. “Watson!…The game is afoot!”

Shoot off an email later and get ready to accost Regillo when I see him in December. One other person who is only starting to realize the depths of my tenacity! (Cue Vincent Price laughter!)

OK. Enough nonsense….for now?. From the looks of things, PRELUDE was a study checking, for at least one thing, the feasibility of a delivery system. If you recall, we talked about ways of delivering stem cells to the back of the eye where they belong before. No just shooting them into the vitreous fluid where they roll around like loose cannon balls and end up who knows where. No, no, no! They must be placed. The way they are placed is to thread them through the subretinal space.

Now I am thinking the suprachoroidal space and the subretinal space are the same thing but I really don’t know. [The title of the article I linked to above is “Subretinal Delivery of Cells via the Suprachoroidal Space: Janssen Trial”.] How many ‘secret passages’ can an eyeball have? Be that as it may, the whole idea is to snake through this space (or spaces?) and get to the back of the eyeball without violating the integrity of the vitreous and opening it to infection.

The progress of the implanted cells in this study was checked with microperimetry. This appears to be an up and coming imagining technique we also talked about. It is a technique that tests which parts of the retina are working and how well they are actually working.

Which brings me to my word limit and bedtime. I have been to hip hop and back and need to take a bath and get ready for bed.

I did find what I think is the original journal article for this as well as the clinicaltrials.gov listing. I will follow up….tomorrow.

written October 16th, 2017 Continue reading “Secret Passages in the Eyeball”

Keep an Eye on Your Eyes

I gave up trying to be perfect a long time ago. Too much like work. That is the reason I get it when people let things lapse. You meant to call the doctor about the vision change you think you are seeing but another day is gone and you never got to it.

Or how about this one? You don’t want to bother such a busy guy (or gal) with a silly, little worry. Then there is the forever popular, if I don’t think about it, it will go away!

Yep, dozens of ‘good’ reasons for not monitoring your vision and keeping your doctor in the proverbial loop. My reason for seldom if ever monitoring? (Come on! At least I own it.) My macula is so far gone I am back on biannual visits. I have it on good authority I will most likely not progress to wet AMD. Relief, yes, but I still sort of wish there was enough left I had to worry.

But that is me. There are plenty of you who are still at risk for developing wet AMD. There are also plenty of you who wish they had responded to early warnings before they lost vision. Since that second group are living testimonies to the fact things happen when we are not paying attention, how do we pay better attention to the progression of our disease?

For years the only game in town has been the Amsler Grid. This being the age of technology it is certainly understandable there are suddenly all sorts of machines and apps that not only do the job of monitoring but also narc on you and call your doctor! (Big Brother is even watching your eyes!)

I did a page on myVisionTrack a while ago. I downloaded it but could not play with it because it needed a script from my doctor. It was also for pay. So far this year we have replaced the washer and the dishwasher, rehabbed the pool and had Beastie Baby to the puppy doctor a few times; forgive me if I don’t invest in some of these things. If you use the service, please comment.

The new one I just discovered is ForeseeHome. This is manufactured by Notal Vision, an Israeli company. The company provides an electronic device that is connected to a telecommunication system. Everyday the patient takes three or four minutes to test her vision. If there is a significant change both the patient and her doctor are notified of the need for an immediate appointment.

ForeseeHome is again by prescription only. The frequently asked questions on the website suggest the unit and service are Medicare covered if you meet the eligibility. Apparently you have to be “dry AMD at high risk of progressing to wet AMD”. Am I sure what that means exactly? What I think it means is someone may have to jump through hoops to get Medicare to actually pay for it, but you can get one with a good argument.

If your doctor wants you to monitor much more closely than you are, one of the new electronic systems may be for you. Spend three or four minutes once a day. Eliminate the guesswork. Eliminate feeling guilty for ‘bothering’ the doctor. Help save your sight.

Written August 9th, 2017

Continue reading “Keep an Eye on Your Eyes”

Timeline Part 1: Advances in Treatment & Care for People with Macular Degeneration

It’s Lin/Linda.  I created this page to go with Sue’s page Not Your Parents’ AMD.  Like some of you, I had a loved one with AMD.  It was my father who was diagnosed with AMD in 2005 at the age of 82.  At the time, I was living 700 miles away and I did not know much about the disease or at what stage he was diagnosed.  He progressed to geographic atrophy (GA), that much I knew.  He was the sole caregiver for my mother who had Alzheimer’s Disease.  He continued to drive (not safely), take care of her and the house.  He was never referred to vision rehabilitation or offered any help other than being told to use handheld magnifiers.

I wondered how things have changed since then which led me to do this timeline review.  Not only have there been advances in the medical end of the field but also in the technology that is allowing people to remain independent for as long as possible.  That is if a person learns how to use the various devices and apps available.

I’ve based the categories of time on an article Age-Related Macular Degeneration
1969 –2004: A 35-Year Personal Perspective by Stuart L. Fine, MD published in 2005.  He says “In 1969, patients with AMD constituted a small part of a typical ophthalmic practice. From 1969 to 2004, the prevalence of AMD has increased, and the methods of evaluation and treatment have changed dramatically.”

I know I have missed many events that have been critical to the history of the treatment & care of AMD.  There is SO much information out there and I’ve tried to use the most significant dates I could find.  Have a suggestion of what to include? Did I get a date wrong? Let me know in a comment or send me an email at light2sight5153@gmail.com.

1st Era: 1969–1979
  • Emergence of fluorescein fundus photography: test used in diagnosis of retinal diseases
  • Development of ‘hot’ (high power) laser photocoagulation, first treatment for wet AMD
  • Relationship of drusen to age-related macular degeneration
  • Other developments:
    • 1976-1977 first personal computers affordable for home use
    • more low vision aids:
      • 1960s large print books became available
      • 1976 large print calculators became available
      • 1969-1970 CCTV (closed caption TV) for reading aid
2nd Era: 1980–1994
  • Clinical trials to evaluate new treatments, especially laser photocoagulation (1979-1994)
  • Development of risk factor data from large and small epidemiologic studies (epidemology is looking for patterns & causes)
  • mid-1980s term ‘senile macular degeneration’ becomes ‘age-related macular degeneration’
  • Other developments:
    • 1982 Vitreous Society was founded; 1983 first meeting attended by 44 retinal specialists
    • 1991 OCT (Optical Coherence Tomography) test used in diagnosis of retinal diseases
    • mid 1980s name changed from ‘senile macular degeneration’ to ‘age-related macular degeneration’
    • 1992 Americans with Disabilities Act (ADA)
    • 1983 first cell phones
    • 1991 World Wide Web for ‘surfing’ the Internet with easy-to-use browsers
    • low vision aids:
      • MaxiAids catalog of aids for orders from people with low vision & other impairments
    • technology/low vision aids:
      • 1982 DragonSystems founded Dragon NaturallySpeaking, speech to text
      • 1988 ZoomText was released which is software to magnify text on a computer screen
3rd Era: 1995–2003
  • Evaluation of radiation therapy for neovascular AMD, not proven to be effective
  • Assessment of pharmacologic interventions for neovascular AMD; Photodynamic Therapy (PDT) “cold” (low power laser) with Visudyne (first drug treatment;  2001)
  • Prevention trials: results AREDS released 2001
  • Other developments:
    • 1995 Amazon sells books online (1998 expands beyond just books; e-books 2000)
    • 1996 Google released
    • 1998 first e-book reader The Rocket
    • 2000 GPS available for civilians; 2001 personal navigation systems available like Garmin and TomTom
    • 2000 Microsoft & Amazon sell e-books
4th Era: 2004 – 2017
  • Completion of ongoing trials for neovascular AMD: FDA approval: Macugen 2004; Avastin 2004; Lucentis 2006; Eylea 2011
  • Earlier identification of eyes at risk: regular use of OCT (Optical Coherence Tomography) and other diagnostic tests
  • Prevention trials: results AREDS2 released 2013
  • Increased number of retinal specialists: eg, American Association of Retinal Specialists (ASRS), formerly Vitreous Society (see 1982 above), has 2700 members representing 60 countries.
  • Other developments:
    • 2011 First baby boomers turn 65
    • 2004 Facebook
    • 2013 first ‘bionic eye’ retinal implant, Argus II approved by FDA
    • technology:
      • 2007 Amazon Kindle e-reader; iPhone & Apple IOS
      • 2008 Android 1.0 & Android phone
      • 2010 Apple iPad
    • technology/low vision aids:
      • 2005 Apple VoiceOver for Mac users
      • 2009 VoiceOver added to iPhone IOS
      • 2010 FDA approved implantable telescope
      • smart glasses/wearable technology
      • 2014 KNFB Reader app for Apple & Android; 2017 for Windows 10
    • ongoing research areas:

Not Created Equal

We heard from a reader who has vitelliform macular dystrophy. I had never heard of it. Therefore you can image my surprise when I picked up an article I had downloaded last week and – guess what! – the article talked about vitelliform dystrophy! Sometimes the synchronicity in the Universe is scary.

Anyway, it appears the Universe has declared we are to learn about vitelliform dystrophy. Here we go!

I have discovered all macular diseases are not created equal. There are dozens of them and researchers are discovering more on a regular basis.

Vitelliform dystrophy may look like age-related macular degeneration and act like macular degeneration but it is not macular degeneration. (Don’t worry. We are not throwing you out of the group!)

Vitelliform dystrophy is a pattern dystrophy. They are so called because the damage tends to ‘draw’ things on the retina. For example, one manifestation of the disease looks like a butterfly (photo to the right is a fundus photograph of butterfly pattern).

Vitelliform 2 is called Best disease. This is not because it is the best disease to have nor is it because Dr. Best hijacked the disease and named it for himself. It is because the disease comes as a result of a mutation on the BEST1 gene. (Apparently that means we all have BEST genes and there are at least two of them. How about that.)

Best disease is a pattern dystrophy because – all together now! – it makes a PATTERN on your retina. The pattern is a sunny-side-up egg. The yolk is centered on the fovea.

One of the nice things about Best disease is you may never know you have it.  According to the Hereditary Ocular Disease site 7 to 9 percent of those with Best disease are asymptomatic. Others may experience vision loss but recover most of their function. A much smaller percentage may proceed to neovascularization and serious loss. Of course, the older we get the better chance we have of having some really serious problems. And by the way, children can have this one.

That is because, once again, it is genetic. Best disease is an autosomal dominant condition. That means it is on a body-forming chromosome – not the chromosome that has the x or the y and makes you a boy or a girl.  It is also dominant and can express itself whether or not its partner gene wants it to. You only need one of these babies to be in trouble.

Of course there are all sorts of things that may or will affect whether or not this gene does actually express. However, this is not a place to discuss epigenetics. Nor am I the one to explain THAT baby! Suffice it to say, you should warn everyone you are related to by blood that it has expressed in the family and they need to have regular eye exams.

Like AMD there is absolutely no treatment and no cure. (I get so tired of typing that). If you have Best disease and progress to CNV you may profit from shots.

And that, my dears, is that. Continue reading “Not Created Equal”

Good Guy Force

We could be a force. Really! According to ScienceDaily (4/27/17) we are up to an estimated 14 million AMD sufferers in the States alone. That is one big number of visually impaired older folks!

We already know knowledge is power. Numbers are power, too. It is hard to ignore that many people. That is slightly more than the populations of Buenos Aires or Istanbul. Wow.

So now that we realize we have so much power, we need to decide if we want to use it for good or evil. Silly question! We all know we are the Good Guys!

Good guys go out and rescue people; right? Well, it turns out there are a heck of a lot of people who need to be rescued!

What am I talking about? David Neely at the University of Alabama re-examined 644 people who had been given clean bills of macular health based on routine eye exams. Double that to get the number of eyeballs, 1288.

Neely found 320 eyes had AMD! That is 25%! There was not a whisper in medical records about any of these eyes having drusen. Undiagnosed AMD was associated with older patients, male gender and less than a high school education.

Maybe there is no treatment for those eyes now, but what about in five or ten years? By then such lapses in diagnosis may mean the difference between an easy fix and serious problems.

Hot Topics Small Talk (volume 2, number 5) also picked up on Neely’s work and make a nice, little summary sheet for us. This summary noted it is harder to visualize the retina during routine exams in older adults. Maybe ‘routine’ should become a bit more rigorous? The pathology was observed using fundus photography.

Other findings cited by Hot Topics? The presence of cataracts did not contribute to misdiagnosis. Also, it did not matter if the initial exam was done by an ophthalmologist or an optometrist.

Essentially, this research suggests we could be over 17 million strong (and I mean that word, strong) if these early cases were not being overlooked. Like I said, perhaps not essential now but possibly crucial in the future.

So, your mission, should you choose to accept it, is to encourage everyone, but especially older folks, to have fundoscopic examinations of their eyes. As usual, should any of your AMD Good Guy force be caught doing this, we will be very proud of you. This page will self-destructive in ten, nine, eight…… Continue reading “Good Guy Force”

Shimmering

Albert Einstein once said “the more I learn, the more I realize what I don’t know.” Apparently I am in good company, because I feel the same way.

With no immediate crises in my life and no immediate reason to freak out – and even with geographic atrophy and permanent retina damage, this state of affairs is possible! – I have been trying to get caught up with some research. I keep running into things I have no knowledge or understanding of.

Lin suggested that after over a year we should know SOMETHING about these things. We don’t. For example, I am still clueless about what I can expect concerning the progression of density of my ‘blind spots’.

And speaking of disease progression, (was that a smooth segue or was that a smooth segue??), I do have a couple of things to say about disease progression from that last article I read. Remember the one on GA?

The article opined all the new interest and hoopla about dry AMD came from the success with treating wet. However it wasn’t why I would think. You know, we have scaled that mountain and are looking for new summits sort of thing? Nope, the reason was they discovered that even after severely limiting the development of neovascularization in eyes, the eyes just kept right on progressing with dry AMD! Sorry, darlings.? It seems a former wet AMD eye becomes a dry AMD eye.

And dry AMD – to my great chagrin – progresses. How much? I assume it can take the entire macula but I have not seen that definitely stated anywhere. I have seen it stated that it generally stops with the macula. Maybe not such a ‘small’ favor. Could be a lot worse.

The last thing I learned from that article is how best to document disease progression. That is with something called cSLO FAF. Isn’t that informative? Exciting even!

OK, OK, just ‘funning’ with you. I looked it up. Fundus autofluorescence is diagnostic imagery. It detects fluorophores in the retina. Fluorophores being chemicals that re-emit lights shone at them. Research quoted by Wu in Use of Fundus Autofluorescence in AMD said risk of wet AMD can be predicted by a patchy reflection pattern and lots of ‘shimmer’ (my word) at the edge of a patch of geographic atrophy is predictive of cell death and growth of the GA. The more ‘shimmer’ the worse the trouble you are in. [Lin/Linda: We hadn’t had a music reference for some time.  When I hear the word ‘shimmer’, I think of John Lennon’s song “Julia” which uses the word ‘shimmering’, hence this page’s title. ::smile::]

So if anyone throws a bunch of letters ending with FAF at you and says you are going to have that, it may be they are checking for disease progression. I cannot remember ever having one, but it is noninvasive so no biggie. Should not hurt. Just more pretty pictures. Hopefully they will find something good.

Pretty much it for now. Will probably write some more nonsense between now and then, but Wednesday I am going to another support group meeting. They are demonstrating an electronic monocular called a Mojo and I want to see it. Will let you know!

Chat with you later!

 

written May 6th, 2o17 Continue reading “Shimmering”

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”

Hyper What?

Morning! Yesterday I was picked up before 7 to get someplace 4 miles away before 8:30. Today they are picking me up after 8 to get 11 miles away before 8:30. You cannot win for losing!

Anyway, if I bounce up and leave you suddenly, forgive me. The van got here.

Looking at GuideMe again, I noticed one of the things they suggested is self monitoring with a hyperacuity chart. A what?

Acuity is sharpness or ‘goodness’ of a sense. Hyper as a prefix means it has been amp’ed up. That is a good try but it turns out I am not exactly right.

According to Wikipedia, spatial discrimination can be made on a finer scale than what we are capable of with visual acuity. The good folks writing for wiki say misalignments of borders can be detected with 10x more precision than recognition of figures can be made. We are better at lining things up than we are at seeing what they are. Very interesting. Let me read some more.

OK. Hyperacuity appears to be the ability to identify the location of individual things in space particularly as they relate to one another.

So far not exactly coming together here. Let’s check Scholarpedia. They say hyperacuity is used to judge curves and sharpness of edges. Also to judge small differences in depth.

Now that sounds useful. I use hyperacuity to keep from walking into walls on curves and to see if pavement is uneven or just broken. Sounds like a good thing to have.

Apparently though hyperacuity is something you really start to lose quickly when you develop wet AMD. On medblog a doctor posted he was using the preferential hyperacuity perimeter, a test, to detect the start of wet AMD when it was still highly treatable. According to Regillo right now about the best chance you folks with wet AMD have is fast detection and fast treatment. That is where regular testing for hyperacuity comes in.

And that is why the home testing market is starting to boom. If you are able to test twice or three times a week from home, changes can be noticed very quickly.

I heard of an app for self-monitoring of vision functioning in patients with AMD and diabetic retinopathy. There is supposed to be a smart-phone based system that incorporates 10 vision tests in one app. It is called myVisionTrack Vision Monitor.

Looking it up in the app store, I found it in among dozens of other vision measuring apps. I am in the process of downloading it onto my iPad for free. However, an article in Retina Today says the app won’t sound the alarm to you doctor without your paying a fee. Maybe $9 a month.

To actually use this thing and have any results shared at all, it appears you both have to pay the fee and have a prescription. (I just discovered that without the 10 digit code it won’t even allow you to ‘play’ the ‘games’!) The developers don’t want people getting the results and trying to diagnose themselves. All results go to your doctor.

Party poopers. Some of my most accurate diagnoses have come from myself and the ‘Mommies’ at school. (Want to know something about health? Ask a lunch table full of Mommies!)

The Retina Today article also said something about the app not having all the bugs out (nearly impossible when dealing with a variety of people using a variety of devices under a variety of conditions.) It has not been FDA approved. Translation? Don’t expect your insurance to pay the monthly fee.

So this has been my contribution to our understanding of hyperacuity. I have still not found a paper hyperacuity chart. Anyone find one, let us know. Continue reading “Hyper What?”

Sometimes It Happens

Last page I talked about how one of the symptoms of AMD is driving me crazy. I hate not being proficient at matching my clothes. A couple of years back I realized I had on plum (that color seems to be my nemesis!) slacks with a red sweater. On my way to my next appointment I stopped at the store and bought other slacks! Being poorly color coordinated can make me self-conscious all day.

According to my ‘personal profile’ on GuideMe – and according to just about every other source- seeing contrast also becomes a real problem with AMD. This is probably why I missed that last step several months ago and why sometimes things just disappear in plain sight!

It’s magic! Now you see it and now you don’t.

There are some online tests available but the one I saw requires registration. Since I am leery of the words ‘free’ and ‘register’ in the same sentence, I found an article that talked about the Pelli Robson chart.  This chart is a series of letters of uniform size that you can read like the Snellen chart. The difference is the contrast between the letter and its background decreases from line to line.

www.psych.nyu.edu/pelli/pellirobson/ offers a link to a printable contrast chart for personal use. It is – here is one of my favorite words again – free. You can also get free scoring sheets online at https://www.scribd.com/mobile/doc/59085894/F.

A study in Finland suggested an average score for 60 year olds would be 1.68. 1.84 was an average score for their subjects in their 20s. These scores make the most sense when you look at the scoring sheets.

Topic next: GuideMe was reassuring for me in one way. It says I only have a 15% chance of developing wet AMD.

Progression to wet AMD is not a guaranteed thing so if you have dry, you are allowed a sigh of relief at least on that point.

They still say dry AMD progresses so slowly 50% of sufferers die before experiencing significant loss.

Not a lot of comfort when you are the one ‘sometimes it happens’ to. However, the rest of you may have another sigh.

Of course, after reading dry AMD is so slow it doesn’t really negatively impact many people, I would like to know why, when I went to the self-help guide and clicked on writing, the first method mentioned was Braille! So sorry, but there is no way at 63 years old I am learning Braille.

Be that as it may, the self-examination of independent living skills has some really great suggestions. I would suggest looking at them!

Gonna end here. 5:45 came early this morning. Still trying to figure out why I got picked up at 6:56 when I wanted to be at work at 8:30. Life does have its mysteries. Catch up with you later! Continue reading “Sometimes It Happens”

I Have Macular Degeneration…Now What?

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.

Where can I quickly find information about AMD?

One of the best resources available is from the Prevent Blindness organization’s website called Guide Me.  You answer a few questions and you will get a personalized guide with important aspects of AMD based on your answers:

Click here to go to Guide Me.

Click here to watch a 4-minute video that explains what AMD is, what causes it, and what can be done about it.

Click here for a good list of Frequently Asked Questions.

Click here to go to a great site maculardegeneration.net where you will find articles written by people with macular degeneration and caregivers. They also have a Facebook page.

What other websites are helpful?

Here are some of our favorites:

Click here to find out should I take the AREDS or AREDS2 supplements?

Click here for a video that covers important information about AMD

Click here for a description of dry vs. wet AMD (we are not recommending any products in this article, but be aware that the site may profit from some products they advertise.)

Click here for an explanation of the stages of AMD (we are not recommending any products in this article, but be aware that the site may profit from some products they advertise.)

Click here to read about what happens if you have AMD in only one eye

Click here for some answers to common questions about depression after diagnosis

Click here for an article about how vision rehabilitation helps prevent long-term depression

Click here for a very comprehensive page about wet AMD

Click here for a very comprehensive page about dry AMD

Click here for an article about how fast AMD progresses

Click here for 10 questions to ask your doctor

Click here to find a support group (I’ve been told that this site may not be up-to-date. Ask your eye specialist for a referral.)

Click here for eye-healthy foods including a Healthy Vision Grocery List (2/14/2022 site wasn’t formatting properly.) Click here to read the answer to the question ‘What should I be eating or not eating to hopefully slow the progression of my AMD?’

Click here to find out what vision changes/symptoms to look for (we are not recommending any products in this article, but be aware that the site may profit from some products they advertise.)

Click here to find out about the people who can help you (what are the differences between the types of eye doctors, do I need to see a specialist, etc)

Click here for tips on how to make the most of the vision you have (section toward the bottom of the page; lots of other good information on the whole page)

Click here for a FAQ (Frequently Asked Questions) from the Macular Disease Foundation Australia.

Click here for a FAQ (Frequently Asked Questions) from our Facebook group.

Where can I do more research?

You can do searches on the Internet – there is a LOT of information there.  We have done a lot of research and here’s how you can find it.

Click here to go to How to Navigate and Search Our Website.

Join our very active Facebook group Our Macular Degeneration Journey. There’s lots more information there as well as support whenever you need it.

How do I move around on the website?

Click here to go to How to Navigate and Search Our Website.

To find about more about me, about Sue, about our project, go to the menu at the top of the page.

Reviewed 02/14/2022

 

 

 

 

Smile for your Picture!

My OCT scan showed no extra veins. That is a good thing but what is an OCT scan?

You have had them. It is that machine with the vertical row of little crosses. You are supposed to stare at the brightly lit one while the horizontal line clicks up and down.

The proper name for an OCT scan is Optical Coherence Tomography. Wikipedia has an article on it and I would refer you who enjoy physics to that article. Social scientist here. I got just about nothing out of it.

However, the article does have a section for the layman and it’s called ‘Layperson’s Explanation’! Even that section requires a bit more than a rudimentary understanding of the physical sciences. In bigger words it says OCT uses light to look into things that you cannot see into (opaque). It takes images by paying attention to the light reflected off of what it wants to see and ignoring the light reflected off of other things. Or maybe knowing those images are in the background. I think. Social scientist here; remember?

Click the photo for more information about the results of an OCT
Click the photo for more information about the results of an OCT
OCTMacular Normal vs Wet_021
Click the photo for information about the OCT test results.

The images that are made are three-dimensional. That means if there are veins where they are not supposed to be, the doctor can see them as ‘bumpy’ spots on the image. Conversely, if you have geographic atrophy and a ‘divot’ the three-dimensional image will show that there is a concave spot.

Get it? I think I do. Maybe.

OCT is great for vision stuff like AMD. It does not penetrate through tissue like sound, but with eyes, it doesn’t have to. You can go through that handy little peep-hole called the pupil. OCT images are of high quality. They are immediate. I got my results the next day. It would have been the same day but the doc was at his other location and I was the last appointment of the day.

And finally, you as the patient don’t require a lot of preparation. They normally dilate your eyes but this week I discovered even that is not required. My experience technician just “shot” through my pupil and the images apparently came out fine. My technician has done this for a while and has become a real “straight shooter”!?

And that is what I think I know about optical coherence tomography. Social scientist here.

Continue reading “Smile for your Picture!”

Highlight: Consistent checkups are important to eye health

March 25, 2016

This is a great article that points out that it is important to have your eyes checked regularly and that the timing depends on what’s going on with your eyes.  The article makes 2 especially important points about a diagnosis of AMD:

  •  Even though there is no cure yet for AMD,  it’s important to catch it early since there are some ways to slow down the disease.
  • If a person is diagnosed with AMD, it’s a good idea for them to alert their children about it since there is a hereditary component to it.

Click here to read the rest of the article

Highlight: Patient monitors vision at home & results are sent to the doctor

Feb. 2016

Here’s a Press Release from Notal Vision, Inc., announcing that Medicare will pay for their ForseeHome telemonitoring system for patients who have dry AMD and who are at a high risk for it developing into wet AMD.

The ForseeHome system allows the patient to test their vision daily at home & the results are sent to their retina specialist for monitoring.

Click here to read more about the product.

Here’s a video showing how it works: ForseeHome AMD monitoring

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.

 

Crazy Like a Fox

The day comes for me to go to my second appointment with Regillo. I ‘dress for success’ for these appointments. Some people may think putting on a professional-looking skirt and pantyhose and doing my makeup for a doctor’s appointment is a little crazy, but I think of myself as being crazy like a fox.

I ‘dress for success’ for the appointment with Regillo. Some say I’m crazy but I think of myself as crazy like a fox.

I can be a manipulative little thing when I want to be. People think of manipulation as a bad thing. It has gotten a bad name because people think that manipulation is always for the agent’s own gain and always hurts the person who he (or she) is trying to manipulate. That is far from the truth. There is something called  ‘positive manipulation’. Your mother used it on your when she told you “here comes the train! Open the tunnel!” so that you would eat your smashed peas. You have used it yourself. We just don’t like to admit it because manipulative has been paired with words like evil and conniving in our culture. Every one of us is manipulative. Some of us do it with finesse and some are heavy-handed. It is simply a matter of style…and training.

DBT Interpersonal Effectiveness Skills teach us that as long as you are not hurting others, not being dishonest, etc, using finesse and certain strategies is perfectly acceptable to try to get what you want. The goal of interpersonal effective is getting someone to do something for you and that person feeling good about having done it.  Win-win. And yes, it is positive – gasp – manipulation.

As long as you are not being dishonest or hurting the other person, manipulation is a perfectly acceptable skill according to DBT.

Another reason I dress up is related – sort of – to the IMPROVE (another acronym) the Moment Skills of DBT Distress Tolerance. I am trying to improve the way I think of myself and the situation. Putting on ‘good’ clothes reminds me I am a professional and have a few strong points. The saying is “clothes make the man”. They also make the woman.

“Clothes make the man” and the women. I’m reminding myself that I am a professional and a few strong points.

So, I dress for success because whether anyone else realizes it or not, this appointment is a job interview. I am interviewing, once again, for the job of lab rat.

I have been anxious about this appointment for days. I am not sure what the decline in my vision will mean –am I no longer qualified for the study?

After the usual round of screenings by technicians, I finally rotate around to the man himself. Regillo confirms there has been significant cell atrophy – read ‘wasting and death’ – since I last saw him in August. He calms my fears that I may have done this to myself. No, this was a natural progression of the disease. No external factors such as sunlight reflected off of the snow or my high blood pressure would have caused this to happen. This is good. I can now at least get rid of one concern. I have been declared not guilty.

Regillo calms my fears that I may have done this to myself. I have been declared not guilty.

Just the same, I still have the worry about the study. Will I still qualify? The study is for those with dry macular degeneration only and this rapid loss of vision suggests I may be developing wet AMD.

Regillo runs an IV and puts beta carotene in my veins. I daresay this is the first time I have ever mainlined ‘carrot juice’! Beta carotene is mostly Vitamin A and your eyes lap it up. By watching where the ‘carrot juice’ goes in your eyes and comparing old imagines with new ones, the technicians and doctor can see if my eyes have been creating new veins.

I daresay this is the first time I have ever mainlined ‘carrot juice’! It’s beta carotene & helps the doctor compare old images with new ones.

Thank God. There are no new veins in either of my eyes. I still fit diagnostic criteria for dry AMD and therefore the criteria for the study.

Regillo suggests I refer myself for low vision therapy – already done – and AGAIN referred me to the study. He suggested that he might be seeing me ‘downtown’. I replied he would definitely be seeing me downtown. Regillo just smiled. Or at least I think he did. Do you think I was too confident?

Regillo just smiled. Or at least I think he did. I still qualified for the study and I am confident I will be in it.

Written in March 2016. Reviewed September 2018.

Continue reading “Crazy Like a Fox”

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

Go to the Top

Websites devoted to AMD and Other Forms of Macular Degeneration

listed in no particular order

Go to the Top

Websites containing information about AMD and Other Forms of Macular Degeneration

listed in no particular order

Go to the Top

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

Go to the Top

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

Go to the Top

Books and reading materials

Specific Titles

Sources of Books

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

Go to the Top

Videos

Go to the Top

Personal stories of living with AMD

Go to the Top

Online newsletters

Go to the Top

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

Go to the Top

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.

Go to the Top

The Science Stuff

Role of RPEs

Geographic Atrophy

Go to the Top

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:

Go to the Top

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

Go to the Top

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)

Go to the Top

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

Go to the Top

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

Go to the Top

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

 

Go to the Top

Home

Blog Posts

cropped-brown-eye-6793182

We will be regularly adding new information to the Highlights/News section as well as Sue’s Journal pages.  To make sure you are notified when that happens, please go to ‘subscribe by email’.  On laptops & most tablets, you will find out how to do that in the right-hand column.  On a smart phone, it will be after the content.

 

 

Home

Sue’s Journal Pages

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.

Update 2024 She HAS been writing about her experience with the APL-2/pegcetacoplan/Syfovre Phase 3 clinical trial, GALE follow-up study, and GARLAND Phase 4 clinical trial.

 

2024 Most Recent Pages

Sue’s Series on Being a Participant in the APL-2/pegcetacoplan/Syfovre Phase 3 Clinical Trial, GALE Follow-up Study, and GARLAND Phase 4 Clinical Trial

2016

Sue’s first aspiration to be a ‘super lab rat’ was not long after she considers the start of her status as legally blind. You can read about that here: In the Beginning.

2019

It was June 2019 she was accepted into the Phase 3 clinical trial for what was first called APL-2, then pegcetacoplan (Syfovre when it was approved by the FDA in 2023).  Finally a Lab Rat. In July of that year, she wrote about her first injection: The Beginning of My Clinical Trial.

2022

In August 2022, before the FDA approved Syfovre (February 2023) and after that she was accepted into the long-term follow-up study, she wrote about her ‘Diabolical Plan’ to be accepted into a stem cell clinical trial while she’s still alive: My Diabolical Plan: Stem Cell Transplant for Dry AMD.

2023

She also wrote about the discussions of the studies: Pegcetacoplan Study Cliffhanger and Pegcatacoplan Side Effect Hunting.

After the drug was approved in February 2023, she revised her article from her perspective of being halfway through the 3-year follow-up study: My Diabolical Plan Revisited March 2023. In this article, you can read about her trip to Wills Eye Hospital in Philadelphia to participate in an interview for a CBS affiliate which ended up being shared internationally about this experience. You can find the link to that broadcast here.

She also wrote What Does Syfovre Mean for You?

She also helped me with the page Questions and Answers – FDA Approved Treatment for Advanced Dry AMD/Geographic Atrophy/GA.

First FDA-approved Treatment for Advanced Dry AMD/Geographic Atrophy/GA: Perspective from Sue.

2024

 

 

 

You can choose:

  1. To START AT THE BEGINNING and follow the pages from one to another like chapters in a book
  2. To get a list of ALL pages (some of the more recent ones may not be here yet)
  3. If you want to access pages by a particular CATEGORY, look to the right of this page or at the bottom and choose a category (for example, Cognitive Therapy, Research, etc)

 

 

Sue’s Toolkit – 2 Years Later – Part 1

Sue’s Toolkit – 2 Years Later – Part 2

Home

Accessibility by WAH