My Macular Degeneration Journey/Journal
From Diagnosis to Decision – June 2023 Since Sue has not written any new journal pages for some time, the site has been archived until we can decide if the work necessary to make sure all information is accurate and up-to-date can be made.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.
original post February 2016, updated March 2017
I found this article to be a good example of the kinds of non-computer low vision aids that are currently available but it is in no way all-inclusive. I’m guessing that these are products that company specializes in but are available elsewhere. Check out our Resources page under Coping with Low Vision for more links to low vision aids.
– Linda
Today was two steps forward and one step back. But sometimes it was two steps back and one forward. When all is said and done, I may be one step further along the road than I was, but that could be debatable.
What was good? We heard about an inquiry we made to the Macular Degeneration Partnership (we asked if they would publish our website address). They like our website and would like to run a short piece on us. Sweet.
Not so good was I emailed ‘my’ researcher at Wills Eye Hospital. They have been told the stem cell research on dry Macular Degeneration is being held up six months. The Stargardt’s study is on hold even longer. ‘My’ researcher seemed upset because she has a lot of people clamoring to get into the study. Maybe if the corporate folks had to answer to the patients we would have a little more movement.
People going blind here! Figure out your organization stuff later. Give the go ahead to the research now!
The only positive of having the study postponed for another six months is I can now plan a summer vacation. Perhaps a cruise since that way my husband won’t be stuck doing all of the driving. I also looked at one cruise line site and they advertised accommodations for disabilities. I might be ‘forced’ to take a cruise to check out their low vision accommodations. Sometimes this is a tough business.
I have been discharged by my low vision specialist. I am getting my reader, near point and far point glasses. Add to that my CCTV and I should be good for a while.
The low vision specialist is also referring me for mobility training. That is sort of exciting. I would still like to learn how to safely cross the street. The thought of being roadkill is not exciting at all.
So, still just trying to move along this low vision path. I get discouraged. Just the same, accepting the problems and trying to deal with things as they come along seems better than the alternatives. I still believe I can make it until my early 90s – unless I get mowed down trying to cross the street, that is.
I don’t intend to spend the next thirty years doing nothing!
My low vision person invited me to a support group meeting. It is going to be a ‘toy show’. Many of her other patients are rejecting the supports the toys are able to offer. They are standing back and being what in DBT terms is called willful. Sort of a “my way or the highway”, “choose to die on every hill” attitude. My low vision specialist thought seeing someone who has embraced the toys might help. Not sure I can make it. Transportation. But I will try to get there over the summer.
In the meantime, I do believe I have a topic for my next post! Continue reading “The Low Vision Two-Step”
Good morning. I don’t have to be anywhere until 10 this morning so I thought I could write a bit first.
First of all, I put something light-colored at the bottom of the steps. I need to get a nice rug but at the moment what I put there will do. I decided it was better to ‘turn my mind’ towards acceptance rather than turn an ankle as I nearly did the other day when I missed that last step. The contrast – just like my Vision Rehabilitation Therapist (VRT) said – helps me to see there is a change there. In this case the change is from the step to the floor, but it could be anything.
My VRT also suggested I put a white sheet of paper on my dark table at work. I am supposed to put anything dark – like my pens or my stopwatch – on the white sheet of paper. That way I will be able to find things I have put on the table a lot easier.
Tip 1: To provide contrast where there is a dark background, I put down a light-colored rug so I don’t miss the last step. To provide contrast on my dark-colored table at work, I’ll put down a white sheet of paper where I will put anything dark so I can find things easier.
Another thing the VRT suggested was ‘dots’. I saw these when I was looking through the visually impaired section at Amazon but I had no clue what they were. Apparently these dots are to place on things to get you oriented. The VRT said I could put them on the number pad for the microwave. Really anyway I would want to do it. Maybe a different color one each on the 1, 2 and 3 so that I would know where they were and then go down the columns from there. I don’t know about you, but when I first got ‘bad’ (‘bad’ being a relative term, of course), I incinerated a fair amount of stuff. These would have been helpful then and I suspect I will find a use for them in the future.
Click here to see an example of ‘bump dots’. You can get them in various colors and there are ones that are clear, too.
Tip 2: Get some ‘dots’ on anything that requires you to orient yourself. For example, I might get different colored dots to put on the numbers 1, 2, 3 on the microwave pad so I would know where I was & can go down the column of numbers from there.
Another thing she suggested was something we teach intellectually disabled students at school. It probably has a real name but I just call it the “1 plus” method. You put something in the microwave for one minute and then check it. If it is not hot enough, you put it in for another minute. It may get a little tedious but it can save on the grocery bill by keeping things from being burnt.
Tip 3: To avoid burning things in the microwave, I can use the ‘1 plus’ method which is to put something in the microwave for one minute and then check it. If it is not hot enough, you put it in for another minute.
My VRT wanted to give me a bunch of other stuff for getting around the house and doing the – gasp – domestic goddess routine, but since a) domestic goddess I am not and b) I am still able to do just about everything I need to do anyway, I asked her to hold off on that discussion until later. She said that her services would be available again as needed. Good to know.
Oh, one more thing, my VRT told me about a ‘pin code’. Telling me if the colors match has become a job for my husband but if you don’t have a handy person to make the call, my VRT suggested you get a consensus on whether something is black or navy and then ‘pin it’. She suggested one vertical and one horizontal but I suspect you could pin one right leg, one left or however you wanted to.
Tip 4: Since it’s harder now for me to tell if colors match, I can ask my husband to tell me if a piece of clothing is black or navy and I can ‘pin it’ by putting a pin in horizontally if it is black and vertically if it is navy. Or you could pin the right leg if something is black and the left leg if something is navy.
That’s about it for now. Have a good day!
Ps She gave me pens that won’t bleed through the paper (on a previous page, I had mentioned I’d been looking for some) but all they say on them is BVS. We don’t know the manufacturer but we are still trying to find out.
Click here for more tips on how to adapt your home.
Written March 2016. Reviewed September 2018.
It is so frustrating not be able to do things at home that you might have been able to do in the past and do safely.
It’s true that even those with full sight have done some of those things, some of which are funny at the time, but it can be really serious for those with low vision.
There are some good tips for avoiding some of these things so that you can remain safe and independent. Here’s a good article with tips on:
Click here for a very complete guide Household Tips for People with Low Vision.
Click here to read about a book called Making Life More Livable. I’ve not read it. If you have & would like to write a book review, please let me know.
Do you have any other tips? Please leave a comment so we can share them with others.
This is Toy Story, too. Sequels are not just for the movies.
Just like all roads led to Regillo, pretty much all ‘toy’ recommendations being given to me are for Eschenbach products. I am not telling you they are the best. I have absolutely no basis for comparison because I have tried very few other low vision products. I am just telling you these are the ones I have tried and so far, I like them. I like them. (This is not a paid endorsement but if anyone out there is with Eschenbach, we could talk business!)
My reader is a Smartlux Digital Video Magnifier. It is easy to use. The reader has 5x, 7x, 9x and 12x magnifications. You can hold it in your hand or prop it up on its little ‘kickstand’.
There is no handle on the Smartlux like there was on the first reader I tried. That reader was all right, but as many products I have had to endure over the years, it was prejudiced against the left-handed. I could hold it in my right hand and there was no problem but the instant I switched it to my left hand, it would collapse on me.
Now, this is fine because, like I said, I have endured the effects of prejudice against us ‘sinister’ people and I am stronger for it. Just remember, when the lefties of the world take charge – as we rightfully should – the reader, the scissors, etc. will be made for the other hand. You have been warned! 🙂
OK. Moving right along….my reader has stop action. In other words, it takes a picture of what it is seeing. This is good in the grocery and a variety of other places. For example, you can stick the reader in the frozen foods case and not have to stick your face in there. Take a picture and you know what you are reaching for. Helpful considering I bought three pot pies I did not like the other week. Oooops.
The reader also has different colors and contrasts. I am uneducated about other eye disorders but I would assume seeing a yellow or a red background, for example, is helpful for some people.
Oh, by the way, most CCTVs have the contrast feature, too. I tend to mention what is relevant to me and gloss over some of the other stuff. Mea culpa, again.
The other thing I want to cover in this post is the pair of telescopic glasses I am trying. These are also called MaxTV but they are not clip-ons (clip-ons are available). I think the clip was bad on the MaxTV clip ons I was trying because they kept falling down every time I moved.
One of the cool things about these seriously funny glasses is that they are adjustable. There are little wheels on the sides that move the lenses closer or farther away from one another.
I have been practicing with these telescopic glasses. I was using them to try to find my husband and the cart in Giant Food. When I found him, though, I had a little accident. I dropped six cans of tuna fish on the floor. Six different cans going in six different directions. It is important to remember that things appear closer than they really are when you are using telescopes. I really thought I was dropping the cans in the cart. One of the indignities of visual impairment.
It is important to remember that things appear closer than they really are when you are using telescopes.
Remember, as my father used to say, “do as I say, don’t do as I do.” The telescopic lenses are not for moving around. You are supposed to be stationary. Bee-bopping around the market is not the proper use for them…even if you have been running up and down the aisles with your hands full of tuna fish for the past 15 minutes and think you will never find him.
If anyone tells my optometrist/low vision specialist I have been doing this, I will deny it! I repeat, “do as I say, not as I do.”
That is it for my toys for now. Recognize that all of these products are rather expensive. I would refer you back to the post about the App Store for free and inexpensive alternatives to these. While the magnifier apps on my iPad mini are not as good a quality as the products I mentioned here, the price is right – often free.
It has come to my attention from the Macular Degeneration Partnership that most devices are not paid for by Medicare.
An approximately $400 iPad mini and free apps may do you well as an alternative if the price of other assistive devices is prohibitive.
Written March 2016. Updated September 2018.
This is a toy story. Yesterday the nice delivery person in his reindeer-brown truck brought me a present. What I got was a state-of-the-art, high-end closed circuit television system. This is also known as a CCTV.
I have been practicing on loaner CCTVs from Blindness and Visual Services (BVS). The models I have used thus far are older – one is 1987; this is not new technology – and not high-definition.
The model I will be getting for my very own – as soon as BVS and I pay for it and make ownership official – is pretty awesome. It is called the Magnilink Zip. It is marketed by Low Vision International which is somehow connected with Eschenbach. These are apparently both Swedish companies and they are doing great things for us with visual impairment. My handheld reader is also an Eschenbach.
The Magnilink Zip has a 17-inch screen. It has a camera that can be focused on either a document on the reading table or can be flipped around and focus on things out in the room. I was told this is a popular model with students because it allows them to see their professors and what is being written on the board.
I would like to reverse that and watch my students in DBT class.
The camera is high-definition as is the screen and the picture is incredible. Very sharp and clear. Magnification goes from a minimum which I estimate to be about 5x to 26x. Looking at something with 26x magnification is pretty wild. Not sure why anyone would need it, but it is there if you do.
The big reason I went for this particular model is it is portable. I work in several different places and do a lot of work from the house. I could put three or four lesser quality CCTVs in all of my offices or I could have just one that goes around with me. The Magnilink Zip folds up small enough to fit in a carrying case that most people are able to carry slung from a shoulder. The whole thing weighs between 15 and 20 pounds.
I work several different places and do a lot of work from the house. I can carry the Magnilink Zip with me.
All in all, not a bad piece of machinery at first sight. I am looking forward to actually ‘road testing’ my Magnilink Zip in the office really soon.
I do need to tell you the big drawback with the Magnilink Zip. That is, the machine is approximately $4000 for the top of the line model that I have. This one has all of the bells and whistles because I will be using it for work. They also make less expensive models with smaller screens and less portability. There may be a model that is more in your price range that will still fit your needs.
Click here for Low Vision International and Eschenbach.
That’s it for now. I might feature more of my toys in another post. There are lots of options out there and I hope you will be able to find the right toys for you.
Written March 2016. Updated September 2018.
3/21/2016 A video & article about an app called Aipoly Vision which has been tested for object identification. That means the person points their iPhone or iPad at an object and they will hear the name of it if it’s in the database of 1,000 objects (they’re working to expand that to 5,000 objects). It uses the iPhone’s built-in accessibility functions.
Click here to learn more about this. It also talks about another app to read text such as restaurant menus.
The Aipoly Vision app is free from the App Store or iTunes.
FDA approved.
UK Implant of tiny telescopic lenses
US Implant of telescopic lens for those with advanced stage wet or dry AMD. Candidates have to qualify including no longer be candidates for medications.
CentraSight partners with BrightFocus for research and patient education. CentraSight provides & inserts the telescopic lenses.
I went back to work this week. It was only part-time and may be part-time for the foreseeable future, but I am back. I think.
I have been told I set a land speed record in getting back to work. I don’t see it as anything extraordinary. Everyone has something they have no intention of giving up for a disability. A lot of people don’t want to give up driving – ever! Others insist upon playing golf or attending church every week. I want to work. I pretty much need to work.
I have done this job for 38 years. It is my profession. In many ways it is my identity and my purpose.
I am a fortunate person. Instead of a cloud of misfortune, ‘dumb luck’ has followed me around pretty much my entire life. When I stop to consider how fortunate I have always been, it is a little unsettling – when is the tide going to turn? However, I try to give thanks for this crazy, incredible run of good fortune whenever I can.
I have been fortunate to have the help of a lot of good people in getting back to work. My husband takes me in and a friend drives me home. Blindness and Visual Services (BVS) has helped to fill my office with ‘toys’. I have a CCTV and a handheld reader as well as a zoom feature on my computer. My low vision specialist has me trying ‘funny glasses’ that magnify and either allow me to read or – another pair – to look over a classroom full of kids. Thank you.
I’ve been fortunate to have a lot of help in getting back to work from my husband and others driving me to and from work and from the people getting me my ‘toys’.
People on the job have been very supportive. The custodian set up my CCTV. The computer person has been scanning materials onto a tablet so I can enlarge them. I have literally been welcomed back with open arms by many staff. Thank you.
Very importantly I have been welcomed back by the administration. I am being given a chance to prove myself. They have been willing to work with me even though things are going to be a bit ‘different’ from now until I am either retired or forced by the disease or finances to go on disability retirement. Thank you.
I’ve been welcomed back by my co-workers and the administration. Thank you.
As I said, I have always been fortunate. Not everyone gets to work with the kind of people I work with, for example. I have not once had to utter the phrase ADA but maybe you will. ADA is the Americans with Disabilities Act. As much as it is hard for me to wrap my head around it, I now come under this act. Damn.
The ADA says no employer with 15 or more employees may discriminate against an employee based on a disability in any aspect of employment. The law stipulates that both the employee must be able to perform essential functions of the job and that the employer must make reasonable accommodations in the workplace. The employee and his reasonable accommodations must not create undue hardship for the employer, his business and his clients.
The American with Disabilities Act (ADA) has laws governing the rights of the disabled employee and the employer in companies with 15 or more people.
There are a lot of other things associated with ADA. For example, these are the laws that gave us ramps and cut curbs. However, I will be staying with this simple information in this posting. Follow the links if you are looking for more.
How does ADA affect me? I am back to me with all of my cool toys. At least for now. I have told my boss to watch me. How am I doing? Am I making mistakes? Am I too slow?
My ‘undue hardship’ would fall squarely on my students. Not having that. That is why I’m back…I think.
I’m back to me with my cool toys and under the watchful eye of my boss. I won’t let my students be affected by my ‘undue hardship’.
Written March 2016. Reviewed September 2018.
This is a love letter to Amazon. I don’t usually develop crushes on mail order houses. Yes, there was a time I was infatuated with the Sears Christmas catalog. However I was very young and it was probably puppy love.
I previously mentioned that Amazon has free e-books (it also has thousands of titles that you can pay for). You can download an e-book to your tablet and make it just about as large as you wish. This little feature has made it possible for me to read. That’s exciting to me.
Amazon’s eBook reader allows you to enlarge the text as large as you want which has made it possible for me to read. That’s exciting to me!
Amazon also has an amazing collection of stuff. You can get pictures and descriptions of this stuff on your tablet. Once it’s on your tablet you can again make it as big as you like. You can actually see what you are interested in buying.
Amazon’s amazing collection of stuff includes all sorts of nifty things for people with visual impairment. Sort of one-stop shopping for those of us who don’t see so well anymore and may depend upon others to get around.
Click here to see products that match ‘visually impaired’.
So far I have purchased fashionable sunglasses that don’t ‘leak’ light along the edges and a halogen floor lamp with a magnifying lens and a clip attached to the pole. Since I am name-dropping in this post, I will tell you my lamp is named Ott. Ott works great but occasionally gets a little tipsy. I have his – er, its – base shoved under the night stand. Solves the problem.
I am waiting for neon-colored paper with dark, black lines. Amazon has dozens of types of pens. I have been told there is a black pen that doesn’t bleed through the paper. Hoping to find out the name of those pens soon. Maybe I can order them from Amazon.
Amazon has neon-colored paper with dark, black lines and pens that don’t bleed through the paper.
If you want a little something to share with friends, Amazon even has a 50 pack of magnetic Amsler Grids. You know what I am talking about. Your eye doctor probably gave you one as a consolation prize when he diagnosed you with your first drusen. Maybe he got his Amsler Grids from Amazon!
Made a discovery when I was researching the Amazon site. There is actually a music (rock?) group called The Amsler Grid. Strange. Maybe somebody in the family is an ophthalmologist. Anyway, you can buy their music on Amazon, too.
There really is some amazing stuff out there. If you want something enlarged or to talk to you, they have it. Some of the stuff is bilingual. Habla Espanol? The thermometer does.
From Old Maid cards to multicolored rock salt, it seems to be available in the visually impaired section at Amazon. Amazing.
Amazon has everything from magnetic Amsler Grids to bilingual products to Old Maid cards…and more!
Written March 2016. Reviewed September 2018.
I had two ‘firsts’ yesterday. Not that I had not done them each a thousand times before but these were the first times I had done them as the new – but not necessarily improved – me.
The first new thing I did was go into Walmart – alone. I was not thrilled with the idea. As I said before, I cannot see faces and Walmart was full of people. What if I snub somebody again? Also the day before I had gone to Staples and had trouble with the credit card machine. Came out of there in tears. Something so simple and I had screwed it up!
Just the same, my husband was not going in with me, so I put on my big girl panties and sallied forth. Here goes nothing.
First thing, make sure you know where the car is, Susie Q. I have already walked up to strange cars at the dog park. If anyone had actually been in them it would have been embarrassing.
I got in the store and got a cart. I know Walmart and knew what I needed. The problem came when I had to read what was in the cases of frozen foods.
Now, sticking your nose on boxes of frozen meals so that you can read them is probably frowned upon by health officers. We won’t even discuss the possibility of getting your nose stuck! So, I did a little Radical Acceptance (DBT concept) turned my mind (DBT alert here!) and got out my near point clip-on magnifiers. Sigh.
Turning your mind is a DBT concept that says acceptance of a problem does not happen in one fell swoop. Shazam! I accept that I am visually handicapped. Uh, no. Acceptance happens over a series of decision points. I did not get my clip-ons out at Staples. I did not accept that I needed them and turned away. Bad decision. In WalMart I decided I needed to turn towards the truth and accept that I needed the help. Sort of bite the bullet – a dozen times a day if necessary.
Acceptance happens over a series of decision points. I didn’t use my clip-ons at Staples but I need to use them at Walmart.
OK. So I have two pairs of really funky looking clip-on magnifiers. One for near and one for far. Let me tell you, people stare. They especially stare when I flip them up and it looks like I have…what? Antennae ?
At school I have been working on the problem by having class meetings. “This is why I look stranger than usual. ” “This is what this is.” What am I going to do at WalMart? Put it on the PA: “Walmart Shoppers, Please do not stare at the strange woman presently in frozen foods.” ?
So, I put on the clip-ons and people stare. So be it. I was able to use the credit card machine. Score.
I even put on my far point magnifiers to find my way across the parking lot. Technically not supposed to do that. They are actually for TV viewing and you are supposed to be stationary. Having everything magnified messes with depth perception. However, I was able to find the car and did not run into anything. Besides, the far point magnifiers make me undershoot, not over shoot. I reach for something and it is a foot beyond where I thought it was. All sorts of new problems. Sigh.
I used my far point magnifiers in the parking lot and did not run into anything.
I also took my far point clip-ons with me on my second new me first. I rode my bike! To get to the trails I use, I have to cross two fairly major roads. I “turned my mind” towards acceptance of my limitations and walked my bike across the roads. Did not want to but I wanted to be roadkill even less. Used my far point clip-ons to check for traffic. If the drivers stared, I could not see them.
Written March 2016. Reviewed September 2018.
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.
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:
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 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.
On one of my ‘out to lunch’ ladies’ excursions we stopped at our local cellular store. I had been having difficulty with my cell phone. Or perhaps I should say my cell phone was having problems with me. I was unable to read my text. I was calling people I had no intention of calling. It’s amazing how similar some names appear when you really can’t see them well.
I was unable to read my text. I was calling people I had no intention of calling.
Tyler took my friend and me under his wing. He got into the accessibility menu of my telephone and tried to make the font big enough for me to see. He tried to point out all sorts of exciting things that could be done with my Android phone. It’s rather amazing what is on such a small machine.
Tyler wanted to put TalkBack on my phone. I demurred. I had already had it on and had a devil of a time getting it back off again. A sweet young woman in Maine and I spent 10 minutes laughing together. We could not shut the TalkBack lady off! Every time the phone was jostled that accursed voice would tell me the time! Things got so bad I suggested the young lady make a house call to help me out. After all Maine is only 8 hours away and this was an emergency! Thank heavens, I was finally able to quiet the TalkBack lady before we needed to go to these extreme measures.
There are accessibility features on both Android and Apple phones. Some are more trouble than they are worth.
So why am I talking about my interactions with the cell phone people? Well for one reason, these encounters once again prove my point that there are wonderful people in the world. I truly believe most people will help if you give them the opportunity. It makes people feel good to help. This is particularly true if the person they are trying to help maintains a sense of humor. A strong sense of the absurd is helpful, too.
I truly believe most people will help if you give them an opportunity especially if you maintain a sense of humor.
Another reason I have for highlighting these encounters is they gave me an opportunity to use the DBT Comparison Strategy. You remember: that is the Distress Tolerance Skill that basically says “hey, things could be worse. Look at that poor guy!” OK, maybe not those exact words, but you get the point.
“Hey, things could be worse. Look at that poor guy!”
I was thinking about what my father had to help him when he had AMD. He made do with a hand-held magnifying lens. Twenty years ago that was pretty much the state of the art.
Comparatively speaking, now is a great time to be losing your vision. Probably the best time yet in the history of the species. How do you like that for cockeyed optimism?
There is so much more to help people with low vision than the hand-held magnifier of 20 years ago.
I mentioned that I have always been an avid reader. Right now I cannot pick up a book or a magazine and get much out of it. However, I have read The Secret Garden in the last few weeks. How? Amazon has free classics to download on a tablet. I have a zoom feature on my tablet that allowed me to magnify the text. I may have had to turn the page at every paragraph, but I read the book.
I even solved the problem of ‘mystery novel interruptus’ that happened when I had to stop 30 pages shy of the end of a new releases paperback I had. Joy of joys, the Bureau of Blindness and Visual Services tech guy loaned me a CCTV. That is closed-circuit TV. You put a paper or whatever you want to read under the camera and it shows up HUGE on the screen. It will have to go to the office when I go back to work, but right now I can get away with trying it out on some things here at home.
The tech guy loaned me a CCTV which makes things you put under the camera HUGE.
The bottom line for this post? You have technical resources. Get yourself to your friendly neighborhood tech or phone store and ask for help. Devices you already own – a cell phone, a tablet – have accessibility settings. Ask someone to help you use them. We have more resources to help us than any generation before us. Comparably speaking, it’s a pretty good time to lose your sight.
You probably already own a device that has accessibility settings. Ask someone to help you use them.
Written in March 2016. Reviewed September 2018.
Click here for the list of Frequently Asked Questions from our Facebook group.
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.
Click here for the list.
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.
Click here to find ways to see simulations of what vision loss due to AMD is like at various stages.
listed in no particular order
listed in no particular order
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.
I don’t know if these are still accurate.
Formats: Braille, large print, e-book and audiobooks
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.
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.
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
Sue’s Toolkit – 2 Years Later – Part 1
Sue’s Toolkit – 2 Years Later – Part 2
