Category: Technology; Apple

DaVinci and Others

I saw an advertisement for the daVinci CCTV. My low vision specialist had initially suggested a daVinci but the daVinci is not portable. That would not have worked for me.

davinci-electronic-magnifier
DaVinci is a high performance desktop video magnifier (CCTV), featuring Full HD, selective text-to-speech (OCR) and a 3-in-1 camera.

davinci-woman-applying-makeup

The da Vinci has some other, cool features such as self-viewing with the camera. With up to 77x magnification that probably makes it the world’s most powerful make-up mirror.?

 

 

It also has built-in ‘OCR’. If you have no idea what that is, you are not alone. Or at least you were not alone until about half an hour ago when I looked it up.

OCR is optical character recognition. According to Wikipedia, OCR is most widely used in scanning documents. Big Business and Big Brother use it in data mining. It is also used in – wait for it – text to speech. In other words OCR is what allows a machine to read to you. In fact, creating reading devises for the visually impaired was an impetus for the creation and improvements in OCR. Cool. Nice give and take, huh?

Of course, the beginnings were pretty modest. In 1914 (Wow! Really?), a guy named Emanuel Goldberg invented a machine that ‘read’ individual letters and converted them into Morris code. Another guy, Edmund Fournier d’Albe invented a machine that ‘read’ letters and produced corresponding musical tones.

Hang in there; just a bit more on the history lesson. The little bit more is the Kurzwell Reader. That product was unveiled in 1976. If you were working in special ed, or getting ready to work in the field as I was at that time, you may remember the Kurzwell Reader. We thought it was amazing. Unfortunately it was not portable and it was not cheap.

So fast forward to 2016. The daVinci has OCR. The KNFB Reader my habilitation person wants me to have for my iPad has OCR. In fact, a lot of things have OCR in their software. When I searched for OCR in the App Store I got dozens of hits. Some of them were expensive, like the KNFB Reader for $100, but some of them were free……and some of them translate Japanese and Lithuanian, but we are not interested in that at the moment.

Stray thought: if your iPad can read and translate multiple languages, can the universal translator a la Star Trek be close behind? Live well and prosper. Look for products that say OCR. Might help.

Continue reading “DaVinci and Others”

Highlight: Why should I be concerned about ‘blue light’?

There’s been a lot of talk lately about ‘blue light’.   You’ve probably heard that it is bad for those who do not have AMD and also for those who do.  The question is what is it and what evidence is there that it is bad for us?

Click here for a very extensive article that:

  • explains the visible light spectrum and tells how it affects our eyes.
  • provides references to blue light research.
  • points out that our cornea & lens (refer to the illustration) filter some of the blue light and that the yellowing of the lens in the development of cataracts helps to filter out blue light.  For that reason, when the natural lens is replaced with an intraocular lens (IOL) in cataract surgery, we lose that protection.  Some doctors insert an IOL that is tinted to block blue light.   Some say that if this is done, it cuts down on our ability to adapt to dark conditions which causes some to have poor night vision.
  • explains the terms used to refer to visible light.
  • discusses the difference types of lamps with pros and cons and gives specific descriptions of what’s available.

Click here for another great article about how the violet and blue light of the UV spectrum can worsen AMD.  The article says that the sources of violet/blue light are “sun (main source), computer screen, phone & other mobile device screens, full-spectrum lighting (ie, used to treat Seasonal Affective Disorder (SAD), fluorescent lighting, LED lights, high intensity mercury vapor lamps (for night sports and high-crime areas), and xenon arc lamps.”

Click here for a more technical article that addresses the effects of blue light on sleep and eyestrain.  It also answers the questions:

  • How does blue light affect eye strain and sleep?
  • Should I block all blue light?
  • Are my eyes just sensitive to blue light?
  • What are software solutions and physical blue light filters?

What can we do to block blue light?  Here are some suggestions:

Do you spend a lot of time on the computer and other electronic devices?  

Click here for an article that describes some ways we can be protected from the blue light emitted from them. It also describes the new feature called Night Shift for the iPhone and iPad that filters some of it.  For Windows devices, there is an app Windows f.lux.  Click here to find out how to download and install it.

You can also get screen protectors and ‘computer glasses’.  I talk about them below.

Do you spend a lot of time outside?

You need to wear sunglasses that filter out the blue light from the sun. Click here to go to a post about how to choose sunglasses.

Do you need eyeglasses or contacts?

Even if you have IOLs (the lenses implanted when cataracts are removed) that block blue light, my eye doctor told me that the amount of blue light filtered isn’t that significant so additional blocking is advised.

You can get the lenses coated to filter out blue light.  Kodak Bluelight Reflect is one. Crizal Prevencia is another.  Click here for other products. Talk to your eye doctor or optician about what they offer.

As far as coating for contacts, that’s available also.  This article talks about tinting for cosmetic reasons but there is also a section that talks about adding a UV coating to them. At the time this article was published, they said none of them should replace sunglasses with good UV filtering. To be honest, I don’t yet know if you can have blue light coating on contact lenses.

Do I need special ‘computer glasses’?

If you do not wear eyeglasses or wear them but don’t have a good protective coating on them, you might consider a pair of glasses with protective coatings but no prescription to reduce glare and blue light transmission.  Even if you have IOLs (the lenses implanted when cataracts are removed) that block blue light, my eye doctor told me that the amount of blue light filtered isn’t that significant so additional blocking is advised.

Click here for a good article about what computer glasses are and how they work.

Can I filter blue light from my electronic devices without specially coated eyeglasses, contacts or ‘computer glasses’?

Yes, you can buy screen protectors for your devices.  Click here for a very extensive discussion of them.

Do you need cataract surgery?

Talk to your doctor about the tinted IOLs that can be inserted (refer to first article above or click here).

What kind of indoor lighting do you have?

Again, the first article above gives a great overview of the terms used to refer to visible light & discusses the different types of lamps with examples.

  • Neither Sue nor I get any commissions from any of the products included here.

Highlight: How do I use Zoom for Apple products?

Many of you use Apple products such as an iPad and an iPhone.  They both have some very good accessibility features built-in.  Zoom is one of them. It allows you to magnify what’s on the screen.

Click here for detailed instructions to get you started.

Here’s a video that may help as well.

Books and More Books

I just set up my BARD account. It was actually pretty easy.

They made me swear on my soul I would not allow anyone – and especially anyone without a disability – to use my password and listen to BARD books. I guess I will have to make sure no one is lurking in the bushes under the windows when I listen to my books ! ☺

I have checked out the new offerings. There is a serious range of them. They have everything from last month’s Seventeen magazine to science fiction by Isaac Asimov to a work about the great extinction of the dinosaurs. There is also a load of French language books.

There is a list of popular titles. It looks like my favorite authors are the favorite authors of a lot of other people. Top of the list are Kellerman, Deaver and Patterson. Even better, there are several titles I have not yet read. All together, an excellent collection of stories for me.

I have not yet checked out the professional or reference works. However I would expect the offerings are extensive.

Now I probably missed the directions, but it took awhile for me to figure out how to download a book. I was not able to download from the BARD website. Obviously doing something wrong; or maybe not. I am not sure. I instead went into the BARD app that I had downloaded from the App Store.

I browsed through the titles and put one on my wishlist. When you open your wish list there is an ‘i’ in a circle on the right hand side. Hit the ‘i’ and your book will download. Once it is download, tap on the title and a representation of the player they sent me comes up. Hit the green button and the book starts to play. Sit back and enjoy.

Of course, now comes the not so good part. While BARD looks pretty good to this dedicated consumer of murder mysteries, it may not satisfy the needs of all. If you are a newspaper reader you are out of luck here. There are obviously no local dailies included. Wall Street Journal did not come up on a search and there were only a handful of old articles taken from the New York Times. No ‘scandal sheets’ as they were called at our house when I was young. If you want to know how the yeti is getting along with his alien abductors you will have to look somewhere else.

If you qualify for BARD it appears to be a nice option for those of us who enjoy a good book. Happy listening!

Continue reading “Books and More Books”

Beast of Burden

Some of you may recognize the title as the title of a Rolling Stones song Beast of Burden. Can’t help it, I love music!

This is going to be odds and ends. Hopefully a theme will develop. Then again, maybe not!

I just ordered a rolling cart. I took my CCTV and some work materials and a full-size iPad and my purse with several low vision toys in it across the parking lot to the other school building today. I carried them all and nearly broke my back.

I don’t know if anyone else out there has this problem, but I have acquired a lot of stuff and it is heavy!

Apparently, that is something they don’t tell you in visually impaired school: having all of these toys can turn you into a pack mule!

Another thing they don’t tell you is what to do with all the cords. In addition to all of the usual things that need to be plugged in I now have a CCTV and a reader and a Books for the Blind player and an extra tablet and the list goes on.

Not only do you have all of these electronic toys that need cords, but they need the correct cord. The smart phone wants nothing to do with the iPad charger and the iPad wants nothing to do with the reader charger, etc. You get my point? All the more fun for a disorganized, visually impaired lady.

Of course, life would be a lot nastier without my toys. I just used my iPad to look up a Talking Book to play in my cute little player. I found the new Jeffery Deaver novel available to borrow for free. That is the same novel I just saw available in hardcover only for something like $16. Not sure how many Lincoln Rhymes fans get Talking Books so I might have to wait a bit. However, it will probably be less time than I would have to wait for it to come out in paperback. I am cheap that way.

I am wondering how long you can keep these tapes. I am also wondering how much listening to audiobooks some visually impaired folks do. The order form was old-school, paper to complete with a – gasp – pen. The thing of it is, it was three columns wide and maybe 20 lines deep, front and back! If your average audio book is something like 12 hours, that is a whole lot of listening.

I just ordered one. I love to ‘read’ but I am not good at sitting that long. I am also trying to stay involved and get back to work full-time. AND I want to check out the BARD offerings. I got the acceptance very quickly but have not gotten around to setting up my account. I seem to be very busy these days – doing visually impaired stuff; ya know?

Just never realized this visually impaired business could be so demanding! Aha! A theme!?

Continue reading “Beast of Burden”

Toy Story, Again

My habilitation person came yesterday. I was hoping she would have my iPad so I would be one step closer to being able to work full-time but nothing was delivered. We are hoping it will all come in next week.

My habilitation person wants to load up the iPad before she gives it to me. She wants me to have something called the KNFB Reader. The KNFB Reader is recent technology (2014) for Apple and Android phones and tablets. My habilitation person says you can take a picture of any text and the KNFB Reader will read it to you. Sounds pretty cool.

The KNFB Reader is available for purchase in the Apple App Store. Again, not a recommendation and not making a cent on any kick backs. My habilitation person wants me to have one so I am getting one. Just want to let you know it exists and is available for $100.

Since we recognize the iPad shimmies all over the place when I am trying to read with it, we also talked iPad stands. Another option for an iPad stand would be the Just Stand V2e. This one looks very much like the one we talked about before.  Only this one is only $140. You know the drill: not a recommendation. Be aware it is an option. The end.

The habilitation lady did bring sun glasses. Or, more accurately, she brought glare glasses. We spent time running in and out of the house seeing which pair she had brought would reduce glare for me the most.

I could have had two pair. One would have been for inside. Never really thought of indoor sun glasses, or glare glasses but apparently there is a lot of glare inside too. Glare is bad business when you are trying to see with AMD. Anyway, could have had two pairs but the same pair worked best both indoors and out.

The frames on the glare glasses were not too awfully bad. Some of them looked like those black things that I refuse to wear because I have no intentions of looking like I am 107. However, there were several that were acceptable to the fashion conscious. They were also big enough to fit over eye glasses.

[Sue doesn’t have the glasses yet but when she does, she’ll take a photo of them for us to see.  In the meantime, click here for examples of glasses that reduce glare indoors and out.]

The habilitation person also helped me register for BARD. Again, registration for Talking Books is required before you are accepted to BARD. The BARD folks warned they screen each application individually before they accept you. They said it would be days but I got my approval in hours.

This time I am responsible for the lack of progress. I did not make up a password yet. The weather is nice and it is time to be outside. More later! Continue reading “Toy Story, Again”

Do You Speak Technogeek?

Hello. Another thing I learned from the massage therapist was there are free apps out there that will identify colors. Remember that one of the things that you lose with AMD is good color perception. I downloaded one of the color identification apps for free from the Apple App Store.

Once more, free is good and I would encourage you or someone you ask for assistance to go looking in the App Store. They do have all sorts of good stuff, a lot of it for free.

The color identification app I found is called Color ID Free from GreenGar Studios [no longer available for iPhone and iPad or Android; there are others so search Apple App Store or Google Play]. The Apple App Store has at least two other color identification apps on the same page. One costs $.99 and the other one costs $4.99. You can try them out if you wish. Perhaps one might give better results than the free one. Right now, however, I am staying with free.

The Color ID app I downloaded has two settings. One of them is simple colors and the other is exotic colors. Before I realized there were two setting I was sort of perplexed. What colors are potter’s clay and mongoose?

I have to admit some of the simple colors were also a bit much. For example, a piece of yellow tablet paper was said to be grayish greenish-yellow!

You can set the Color ID Free app for simple colors or exotic colors.

Another thing I discovered in the Apple App Store was an app that took me to the AccessWorld web pages. According to the description, AccessWorld is an online magazine from the American Foundation for the Blind dedicated to technology for people with low vision. It looks to be a Consumer Report for people searching for low vision aids. They also provide independent evaluations of products.

AccessWorld webpages, provided by the American Foundation for the Blind, are dedicated to technology for people with low vision.

Initially, as I was looking at some of the articles, I got the impression the site is good for technogeeks with deep pockets. However, as I continued to browse I discovered this impression was not accurate. There is an article on how to use the features already in the Mac Yosemite OS (operating system) to assist the visually impaired [this operating system has been replaced since Sue wrote the article]. The article was a little heavy on the tech for me. OK, I admit it; most anything tech is dense for me or perhaps I am the one who is dense. The point is I already own a Mac with the Yosemite OS so all I need to do is bother a technogeek and I can get VoiceOver and other options activated. The ‘machinery’ is already in the system and AccessWorld tells me how to access it…..if I speak geek. After all, AccessWorld does advertise as a technology site.

There’s an article for those with a Mac to help get VoiceOver and other options that came with the Mac.

I also found an AFB’s AccessWorld review of Be My Eyes. That is also a free app in the Apple App Store. This app uses a video link to a live volunteer to help you read stuff and find stuff.

At first, I was a little nervous about downloading it, but the AccessWorld review was promising. The product reviewer had used the system and after a few initial glitches, it had worked well. The reviewer had, for example, had some poor soul in California helping him grid search the backyard for something that had blown off the deck.

This post is getting a little long, but I want to add one more paragraph. The Be My Eyes software was developed in Denmark (great country but really expensive. If it wasn’t for the cost, it would be a place to look if I ever ran away from home…but I digress). The developer thought he had a great idea but thought he might not be able to get enough sighted volunteers.

How wrong he was! There were over 40,000 (maybe 60,000. I just had a memory lapse on the number) and they were complaining they were not getting enough opportunities to help!

You’re right. That was two paragraphs and this is the third. I lied. Cannot vouch for Be My Eyes because I have never tried it but AccessWorld liked it.

Try the Be My Eyes app and let me know. It might be sort of cool having 40, or was it 60, thousand people waiting to serve you?

Written April 2016.  Reviewed 2018.

Continue reading “Do You Speak Technogeek?”

News: The App That Helps Blind People See

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.

News: Apple releases new feature for iPhone that will help people with low vision & others

  • March 2016: Apple just released a new feature for people with low vision & those of us who want to prevent it.  Research shows that blue light from various sources (see below for more info) can adversely affect our vision.  Also, there is some evidence that the blue light from our mobile devices when used at night will make it more difficult to fall asleep.  The new feature called Night Shift allows you to adjust the screen on your iPhone so that it is ‘warmer’.  Read more about it.  You need to update your iPhone’s IOS to at least 9.3 first.

Sim City for Low Vision Folks

I have already written a love letter to Amazon. Today I am going to write a love letter to the Apple app store. So, I’m fickle. Shoot me.

There are some cool, free things in the App Store. I downloaded a magnifier that uses the camera on my tablet to take images and enlarge them, for example. However, today I want to talk about the Macular Degeneration Simulator.

People are great. I said that before but it bears repeating. People are great but unless AMD has touched them directly they have not a clue what it is. You know how people hear ‘visually impaired’ or ‘centrally blind’ and all they think about is total sight loss! People have a lot of wrong ideas about what is going on with us AMD folks.

People are great but many hear ‘visually impaired’ or ‘centrally blind’ and all they think about is total sight loss!

I have had several people take my arm and try to steer me. Sweet and caring thoughts are behind the actions. However, I don’t really need that kind of help. I can still navigate pretty well and expect to be able to do it for some time to come.

Several sweet people have taken my arm to try to steer me but I can still navigate pretty well.

I have also had several people suggest I get a dog. To begin with, the beastie baby is used to being an only dog. Also, unless you can find me a dog that can read, tell me whom I am looking at and drive, I have no use for a service dog.

Like I said, people are great, but they don’t get this Macular Degeneration business. Enter the handy-dandy Apple AMD Simulator.  On your iPhone or iPad go to the App Store and search for ‘macular degeneration rnib’. RNIB stands for Royal National Institute of Blind People. [As of October 2018, the iPhone version of this app is NOT available but there is a version for the Apple iPad. Check the App Store on your iPad.]

I downloaded this app from the App Store. It is a great price: free. It has four settings: normal, early, middle and *shudder* late disease. The late simulation scares the bejesus out of me.

The Apple AMD Simulator has 4 settings: normal, early, middle and *shudder* late disease.

How I see is worse than early and less than middle. I went from basically normal to that in about two weeks time, but that was an earlier post.

I have been using the AMD Simulator to show people how I see. A fair number of them have expressed relief; they realize my vision is not great, but not as bad as they had feared (at least not yet). The late setting scares the bejesus out of them, too. It makes me feel good that they understand and feel better. Also, being an educator at heart, I feel good that I have been able to share some knowledge.

So there that is. If you have folks in your life who don’t get it, try showing them how you see. The AMD Simulator is in the App Store and it is free.

I highly recommend the free Apple app AMD Simulator to show folks what AMD actually is.

Written March 2016. Reviewed September 2018.

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.

 

Tech Talk

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.

Continue reading “Tech Talk”

Resources

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

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

Frequently Asked Questions

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

AREDS2-based Supplements

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

AREDS2-based Supplements With 0 or 25mg of Zinc

Click here for the list.

Navigating

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

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

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

Topics-click below to move to a topic

Links We Like

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

See what vision is like at the various stages of AMD

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

Glossary

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Websites devoted to AMD and Other Forms of Macular Degeneration

listed in no particular order

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Websites containing information about AMD and Other Forms of Macular Degeneration

listed in no particular order

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Support

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

Message Boards including ones from
By postal mail

I don’t know if these are still accurate.

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

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Where to find services

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

Resources for Students

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Books and reading materials

Specific Titles

Sources of Books

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

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Videos

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Personal stories of living with AMD

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Online newsletters

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What is AMD?

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

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What is Stargardt’s Disease?

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

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The Science Stuff

Role of RPEs

Geographic Atrophy

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Symptoms

Charles Bonnet Syndrome/Visual hallucinations

Other problems with vision & AMD

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

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Risk factors

Age

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

Diet/nutrition (working on this section)

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

Race

Gender

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

Uncontrolled high blood pressure

Uncontrolled high cholesterol

Smoking

Blue Light

Eye Color

Aspirin & other medications

Other possible causes

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

Connection between AMD and Alzheimer’s Disease

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Treatments

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

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Research/Clinical trials

 

How can I become a part of a clinical trial?

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

Gene Therapy

Bionic Eye/Retinal Implants

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

Nutritional Supplements

  • See Vitamins/Supplements section below.

Stem Cells

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Coping with low vision

Low Vision Aids

Wearable Technology

  • coming soon!

Suppliers of low vision aids

Financial Help

Sunglasses

Lamps

Transportation

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

Bioptic Driving

Depression

Checking vision

Amsler Grid

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Self maintenance/self care

Low vision rehabilitation

Vitamins/Supplements

Nutrition

Exercise/Activity

 

More to come, you can check out these posts now

Video: Overview of Assistive Technology for People with Low Vision

Highlight: How do I use Zoom for Apple products?

Highlight: What about Apple’s accessibility features?

News: Top 10 Low Vision Aids for AMD

 

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Home

Blog Posts

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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

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