macular degeneration, macular, diagnosis Technology: Android – My Macular Degeneration Journey/Journal

Sue’s Toolbox Update 2023

Sue wrote most of this, of course. My comments are in [ ]. When you see any text that is a different color or underlined (varies by the device you’re using), you can choose it and go to a page with more information. It’s called a link.


Hi! Lin asked me to update my “toolbox” page. It has been three years so it might not be a bad idea. [Sue & some others call me by my ‘childhood name’ Lin, but I’m also Linda ::grin::]

Lighting!

I stand by most of what I said in 2020. Good lighting is essential. ​I was told to get LED lights when I started this journey. I have Ott brand lights and they work well. They also last forever. [You can often find the Ott lights on sale at the JOANN store.] The bulb in the light next to the bed has been going strong for seven years. The LED lighting is cool to the touch and reduces glare. If you have vision issues, you know how much “fun” glare can be! Not! Reducing glare is a real plus in lighting.

Magnify, Magnify, Magnify!

When you have advanced, age-related macular degeneration there are a few, simple rules: magnify, magnify, magnify!

I remember walking home from elementary school to find my grandfather trying to read the newspaper with a handheld magnifying glass. Same thing with my father several decades later. However, these days, it is not your father’s magnification any longer!

My workhorse is my closed-circuit TV magnifier (CCTV; also called video magnifier). They are expensive, but for me, they are indispensable. I take notes, pay bills, sort out my taxes, everything on that machine.

My CCTV is a portable model from Low Vision International. It has a sliding tray and a camera I can flip to view presentations and people across the room. I got the model you can hook up to a computer, but I have not used that feature yet. [Where to find these devices and other low vision aids? Check my section at the end ‘Finding Help to Create YOUR Toolbox!’]

Computer

And speaking of computers, my iMac is also an essential tool in my toolbox. I learned on a Mac, so that is my platform of choice. While Macs are relatively expensive compared to other brands on the market, they also come with a magnification feature built in. [Great resource for learning about using a Mac from Perkins School for the Blind ‘Getting Started on the Mac for Users with Low Vision.’]

This is as opposed to PCs that need you to add a magnification app. My magnification app for a PC I use is ZoomText. ZoomText not only magnifies, it also gives you voice over. Voice over is a “drive-me-crazy” feature that reads what you have put the cursor on and what you are typing. Right now voice over is enough to drive me insane, but it may be very helpful in the future. Either way, ZoomText is not free but is affordable. [Her reference to ‘voice over’ is not the same as Apple’s VoiceOver feature.]

iPad

I am typing this on my iPad. I purchase the BIG iPad with a 12.9 inch screen and I love it. My iPad not only magnifies but holds a number of apps that help me with the little inconveniences of being visually impaired. When I need a professional reference book, I buy a hard copy but also request a pdf version. I am on record with several publishing houses and they are required by law to provide those to me. Disability does have some privileges. Once I download the pdf version into NaturalReader, my iPad reads to me and I follow along in the book. [Hadley has great ‘how to’ videos on using an iPad.]

I can also “read” books on my iPad. Since I am legally blind, I am qualified to use BARD. BARD is great! There are hundreds of thousands of audiobooks available for free. Love that word free. [BARD is just one resource available from the National Library Service program ‘That All May Read.’ For those who qualify, there’s also an easy-to-use audiobook player with cartridges you can get.]

I go in spurts and stops with my “reading” any more, but I watch TV on my iPad regularly. There are a number of broadcasting companies that offer free apps. While they regulate what you can access for free, they do let you access more if you have a cable company and register. I like watching Tv on my iPad because I can “magnify” the picture by shrinking the distance to the screen. Another thing you might be interested in is audio description. I watched ‘All Creatures Great and Small’ on PBS and the audio description was helpful and not intrusive.

Other Tools for Magnification

Two more things before I go: magnification and magnification. I have a handheld, electronic magnifier that is good for restaurant menus and the like and a pair of telescopic glasses. My telescopic glasses are MaxTV glasses. I have a friend now who likes to go to the movies. I wear my MaxTV glasses and the 3-D glasses at the same time. Avatar 2 was stunning. [Her MaxTV glasses are from Eschenbach, a company considered to be one of the best for such products. There are less expensive products you can find through sources such as Maxiaids or Independent Living Aids. I don’t recommend you try the least expensive, though. Read the reviews and definitely make sure that you can return them for free if they don’t work for you.]

So there you have Sue’s Toolbox, 2023 version. I will be the first to admit the price tags on those things can be a bit shocking. Just remember the three important points: magnification, magnification, magnification. The same results can be accomplished in other ways. Hope this helped!


Finding Help to Create YOUR Toolbox!

Low Vision Therapy

Linda: We recommend that since there are so many options for these and other low vision aids, some of which are expensive, it’s best to find a low vision therapist, low vision occupational therapist, or a vision rehabilitation program where specialists will listen to what you want and need to do but can’t and will help you find what works for you. There is no ‘one size fits all.’

We recommend that to find low vision therapy near you, start by going to the VisionAware site to ‘Directory of Services’ (bottom or side of the page depending on what device you’re using) where you’ll enter your zip code (US) or province (Canada). In the UK, there are 2 great groups who can help: The Macular Society and the RNIB. You want to look for non-profit organizations, universities, or government resources where they’re not profiting from the sales. You can of course ask your eye specialist for organizations/specialists near you.

Vocational Rehabilitation

In 2016 when Sue became legally blind from advanced dry AMD/geographic atrophy/GA, she contacted Pennsylvania’s Bureau of Blind and Vision Services/BBVS because she wanted to continue to work. You can read about that here: A Human Doing. They provided some of the low vision aids such as the magnifiers, telescopic glasses including MaxTV glasses, the CCTV, software ZoomText and NaturalReader, a basic iPad, and a white cane. They also provided her with some training on some of the devices. She also had what’s called Orientation & Mobility training to help her get around safely. She did pay a fee based on a sliding scale of income. Every state will be different.

You can find your state or province vocational rehabilitation resources through the link to VisionAware above. You can also ask your eye specialist about it.

More Resources

A good resource for products and technology is VisionAware which is a not-for-profit organization with the APH (American Printing House). Check out this section ‘Helpful Products and Technology for Living with Vision Loss.’

Magnifiers and telescopic glasses that she refers to are called ‘optical devices.’ Here’s a good article about them with examples ‘What Are Low Vision Optical Devices?’


New March 19th, 2023

Sue on Assignment: Be My Eyes

Hi! She’s back! Lin said some of you have been interested in trying Be My Eyes but were having trouble. Guess what. I had trouble too!

Downloading the app and registering were not bad at all. For me. Remember I still have a lot of usable vision and I have some experience with technology. If your vision is very limited and/or if you are technologically challenged, get help. It will only take them about five minutes.

Anyway, I registered and got the email confirmation. However, the link in the email did not work. Spinney, spinney, spin but no go. I finally just went back to the app I had downloaded on my iPad. It worked!

My call only rang for about less than a minute. It was answered by a very nice gentleman named Ron. Ron was able to tell me the expiration date on my ricotta cheese, and he said nothing about views of my kitchen which really needed to be cleaned up. Ron is a good guy.

Ron also had no problems with submitting to a quick interview. It turns out my first call was also his first. He had signed up a little over a month ago. He said calls sound a tone on a number of phones and we, the users, get whomever can answer first. Ron had had a few other possible calls but he was driving and wisely did not answer.

Ron is in the States. Be My Eyes seems to match calls to volunteers in the same regions. I did not ask where he was specifically, but his accent was not far off from my own.

Ron volunteered because of his grandmother. She had Macular Degeneration as well. He also works for an eye doctor (sorry, I forget which kind) and he has seen a lot of people with serious vision issues.

All told, it was a very positive experience from this end. I was very pleased with how things went. The only glitch, as I mentioned, was getting from the email back to the app itself.

If you are able, you might want to read the piece that is included with the app. It seems this “microvolunteering” project is the brainchild of a man in Denmark, Hans Jorgen Wilber who needed a way to limit his dependence upon friends and family. He felt like a burden, constantly asking for help (or at least “constantly” in his mind). Although they first thought it would be difficult to get sighted volunteers, that did not prove to be the case. There are almost a million volunteers! They speak more than 180 languages and can be found in more than 150 countries. In other words, the chances are pretty good, wherever you are, they will be able to find a “Ron” just for you. Cool.

So, there you go. If you cannot go from the email to the app after you register, just go back to the app. No biggie. It worked just fine from there for me.

Thanks, Ron!

Written November 29th, 2018

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Tech Tuesday: App Spotlight – Be My Eyes

Have you heard about all the smartphone and tablet apps but think you have to be a ‘computer geek’ to learn how to use them?  I’ve got the app for you!  It’s called Be My Eyes.

The article Be My Eyes: Get This App And Help The Blind explains it well and has photos to show you what you should see on the screen when you use it. The article says, “Many iPhone users with visual impairments use a video FaceTime or Skype call with a friend for a brief session of sighted help—to find a hotel room door, for instance, or to help set the controls on a washer or dryer. But what if your friends or family members are not available when you need assistance? Or maybe you call the same person again and again, and you worry you might be overstaying your welcome?”

Be My Eyes pairs sighted volunteers with visually impaired people who could use another pair of eyes.  The app is free both to download and to use.  It’s available both for Apple (App Store) and Android (Google Play) devices – smartphones AND tablets.

After you download the app, you basically click on it and follow the instructions:

  • You’ll be asked to choose from:
    • I am sighted
    • I am blind
  • If this is your first time using it, you’ll be asked to create an account and be asked to allow the microphone and the camera to work with the app.
  • If you’re calling for help, you’ll be told that you are waiting for the first available helper.
  • You will hear the helper’s voice. They’ll hear yours and will see what your forward-facing camera is pointed at. The helper may ask you to move the phone or tablet a bit so they can see what you want. They may tell you to turn on the light on your device so they can see better.
  • The uses are really unlimited!
    • Do you want to know the instructions on a can of soup?
    • Do you want to see the expire-by date of something in the fridge?
    • Shopping and can’t find something?
    • Can’t find socks that match?
    • Did you drop something
    • More ideas here–>https://www.bemyeyes.com/get-started

Here’s are some GREAT videos with demonstrations.

A Pretty Good Monday

Monday, Monday… Let’s hope it will be all we hoped it would be. (The Mamas and the Papas 1966) . We are going to run errands and going to add a stop at a low vision store in a city not too far away.

I had no idea it even existed until a friend of a friend put me on to it. Network. Network. Network.

Monday afternoon

So far, except for the rain that has me California Dreamin’ (The Mamas and the Papas also 1966), this has been a decent day. We ate at a “nationally-known seafood restaurant” and then went to the low vision place.

The store is pretty small, and they admitted there is a lot more in the MaxiAids catalog. (MaxiAids is a great resource!) What was cool, though, was I got to use the IrisVision goggles for a quick demo.

The IrisVision system combines a Samsung in a virtual reality (VR) headset with a Samsung Galaxy phone to provide magnification at several different distances.

The IrisVision system has a “bubble” that you can use to zoom in on things in the larger view. I had some problems with that because the clock face looked as if it had been imprinted on a beach ball. I liked what the woman I was talking to called the “TV view” much better. The goggles can be focused so you don’t have to deal with your myopia (or whatever) when using them. There is a nice, wide field of view.

Overall, in a very short presentation, I was impressed with the quality of the image and the magnification capacities of the system. I was not thrilled with the weight of the goggles, the battery life (about three hours) or the price.

Not sure they can do anything about the weight right now. They are reported to be working on the battery life and the price. The woman I spoke with said the price for the whole system is $2500. Both she and the website indicated the IrisVision system can be purchased on credit for $100 per month. That is about two years. I heard a rumor they are not charging interest, but I do not have that substantiated. [Lin/Linda: Actually, their website says that payment plans “start at” $81 per month and they DO charge interest: “$80.86/mo. based on a purchase price of $2,500.00 at 10% APR for 36 months. Rates from 10–30% APR.” I personally believe that the prices of this type of visual aid will be coming down now that there’s more demand and more competition. There are more of these headworn devices being developed and they have more features. I personally wouldn’t buy one – yet. ]

The place I went has purchased three or four of them and have loaned them out to clients. There was some sort of grant involved.

Anyway, I gave the woman our card and asked her to see if any of the clients using the IrisVision system would like to write a page. Maybe we will get feedback from someone who has used the thing for more than five minutes….and remember, should any of you want to be a guest author, we would love to hear from you. [Lin/Linda: If you want to check out the current competition, I’ve written some pages–click here.]

And one last thing before I go, being the dog lover I am, I wanted to do a shout-out to Imus, who apparently came from a litter all named after radio personalities, deejays, and shock jocks.

Imus was the reception’s guide dog and, since he was out of harness, I got to love him up. Sweet, sweet dog….and thank you to Guide Dogs of America for making him available to his owner and by extension me.

All in all, glad I “trusted” that day. It was a pretty good Monday, Monday.

Written July 25th, 2018

Next: Gold in Them There Eyeballs

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Lookout

This has been day 2 of the partial retirement adventure. I don’t count the weekend. I took the puppygirls to the dog park today. They had not been since they were baby puppies.

Even though there was only one other dog there, they had a great time. Smellfest-2018! They are anxious to go back soon

I got my loaner CCTV set up. The machine itself is not only large but the lowest magnification is HUGE. Better than nothing, though.

I also contacted Eschenbach about repairs. They are really tightening up. Not only no more loaner machines but also you need a credit card on file to get service. No shipping and handling costs paid either.

I got the puppygirls out to the pool this afternoon. Took a look at the pool deck and thought it would be a perfect way to describe geographic atrophy.

What am I talking about? Well, a few years back my husband painted the concrete around the pool. Apparently, his family has something against naked concrete. Anyway, a back injury and my complaining the pool deck looked like it had the mange made him decide not to try to paint again. Being fanciful, I see all sorts of ‘maps’ in the peeling paint. The way the paint is peeling is similar to how your macula is degenerating with geographic atrophy. Patches here and there.

Just a thought. A weird one, but a thought.

And thoughts lead to intelligence which leads to artificial intelligence which leads to a new topic. Tada!

Watch out Microsoft! Google is nipping at your heels!

The Macular Society ran a post about how Google is launching a new Android app. This app, called Lookout, hopes to give Microsoft’s Seeing AI a run for its money. Lookout is reported to be able to do for Android users what Seeing AI does for Apple users. Only they hope to do it better, of course.

Lookout is reported to give auditory cues to what the VIP may meet in his environment. It is designed to wear on a lanyard around the neck or in a shirt pocket.

Lookout is supposed to process things in the environment and share what it believes to be relevant. Sounds like a pretty big order to me!

Supposedly Lookout is programmed to learn what your tastes are and point out to you things that match those tastes. Great as long as you don’t want to experience anything new. It sort of sounds like if the Italian restaurant is next door to the Indian restaurant, Lookout will always steer you in the direction you usually go. In my case, I would be eating a lot of Italian even if I were interested in a culinary adventure. I might not even know the Indian restaurant is there.

Not sure that is the way it is going to work but that could be a problem.

Lookout is again said to have four modes: home, work, and play, scan and experimental. Scan is supposed to have a text to speech feature. Thus, it can read to you.

So, there you have it. Blow by blow of my second ‘work day’ off the job. But don’t worry, you’re going to get a reprieve. I work at the counseling center tomorrow!

Hi ho, hi ho, it’s off to work I go!

Written June 12th, 2018

Next: My New Luggage

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Sue’s Toolkit – 2 Years Later – Part 2

Hi. Sunday and the snow is coming down! All day I have been fighting “it’s snowing! I don’t have to do my work! We will have a day off tomorrow!”

That’s me, by the way. There are no school-aged kiddos in this house. I have been fighting procrastination ever since the snow started around noon. Did manage to get some of my ‘homework’ done. One report written. I don’t want to think about how many more to go!

So, taking time to write a quick page before going on to report #2. I got one of my mymacularjournal.com ‘homework’ assignments back from Lin. Full of ‘red marks’! “Did you mention this? How about that?” Good grief!

I told her I would blame my having to do this page on her.? So there. [Lin/Linda: What can I say…we have high standards here. ::grin::]

Here we go…what has survived the test of time redux.

First of all: these are not advertisements. There are plenty and PLENTY of other products that mostly likely work as well. These are the ones I tried and they worked for me. I have no investment in any of this stuff. If you use other things and like them better, make a comment, write a page. We want to hear. Also, caveat emptor. If you buy something and “hate it!”, it’s not my fault. These are not recommendations.

Now that that is out of the way…my CCTV is from Low Vision International. The model is the Magnilink Zip 17. The 17 is for the screen size. Lin wanted me to tell you what I have and like but, remember, there are probably dozens of others. The big selling point for this one is it is portable. Maybe about 20 pounds including the case. It goes to school. It goes to the office. It goes home. Good deal. Don’t need portable? Maybe this one is not for you.

Lin also wanted me to mention the iPad with the Justand. I seldom use it but if you cannot get someone to plop down $3500 for you to get a CCTV?  The iPad on the Justand is a viable alternative. [Sue wrote about the inexpensive Justand that holds the iPad above what you want to look at. You can see the image on the screen and can enlarge it as needed.  Her page Good Stuff Cheap.]

Why do I seldom use it? I have a portable CCTV. Using my iPad as a magnifier means it is not available for anything else.

Like watching TV for example. Lin asked how I watch TV on my iPad. (I think she knows. It’s a test.? She wants to see if I really know!) I went to the app store and searched for some of my more favorite networks. I have CBS, NBC, PBS and FOX apps on my iPad. You have to ‘subscribe’ (read ‘buy’) if you want the good stuff. By good stuff I mean prime time and current, but sometimes they throw you a bone and you can watch your shows for my favorite word: free. Most of them require you watch the commercials, but sometimes the commercials are the best part! [You can also subscribe to services such as Hulu and Netflx and watch their programming on the TV or on your tablet.  If you are an Amazon Prime subscriber, you can also watch TV shows and movies on the TV or tablet many are free, some have a cost.]

And when I say require, I mean just that. You cannot fast forward through them. But you can go to the bathroom or get something to eat if you want.?

Oops. This is getting long. Catch up on the rest of the questions later! I gotta get something to eat. (Bet you thought I was going to say something else!?) Bye!

Written Feb. 1st, 2018

Continue reading “Sue’s Toolkit – 2 Years Later – Part 2”

Sue’s Toolkit – 2 Year Later – Part 1

Allow me to start this page with a statement of fact: I am not normal. I do housework under duress. If God wanted me to cook, he would not have invented Chinese buffets and frozen lasagna.

In short, if you are looking for tips and equipment that will make cleaning and cooking easier for someone with a visual impairment, this page is not the place.

That place IS MaxiAids. They have a fantastic collection of adapted materials. Many of their products are designed to help with domestic drudgery…ah, chores. If you are in need of those sorts of products, MaxiAids is wonderful.

Oh, and by the way, none of these are advertisement or recommendations. All of this stuff I either use or, in the case of the MaxiAid stuff, had pointed out to me as a valuable resource. What fits my needs may not fit yours.

Also, if you want to buy any of those types of products, use them and write reviews, welcome guest authors! It just ain’t going to be me doing it.

[Lin/Linda here with a very red face! After all Sue’s fuss about my ‘grading’ her page, she caught me!  I’d forgotten to publish THIS page first.  Whoops!  There are a lot of things I could blame it on but I’ll spare you all.  Sorry, Sue.  You can fire me anytime.  ::grin::]

What I am going to do is do a brief rundown (apparently better than a run-over) of what I have used that has stood the test of time. What technology am I still using two years later?

Let us start with what I just ordered: mini monoculars. Yes, I have had several. The problems with them are 1) they don’t survive water – especially salt water – well and 2) they are not built to be chew toys. The last one I had got chewed to bits. Puppygirls strike again. The one immediately before that fell off a paddle board in the Bahamas. Several times in fact.

When not being gnawed or submerged, the mini monoculars are great for surveying your surroundings from a distance. They are good for street signs and identifying what is running across the field towards you. Yikes!

I bought a larger monocular. I also bought a small pair of binoculars. They were both too heavy to wear around my neck all the time.

What I would recommend more than anything is an iPad. My iPad may be my prize possession. With the zoom feature I can do scads of things! It is onto my iPad that I have downloaded all sorts of free apps including apps for major television stations.

I am not a big television fan. If it doesn’t have NCIS somewhere in the title, I probably don’t watch it. However, when I do want to watch a program, I can often stream an episode of something or other for free.

The really good thing about watching TV on the iPad is your ability to move the screen as close to your nose as you need to. Remember relative distance is a way to magnify. Also with the iPad you can replay a scene if you don’t quite get what happened.

I have talked about all sorts of apps that are on my iPad. Honestly, I may use the KNFB Reader occasionally and NaturalReader occasionally but not all that often. My eyes are still strong enough I can use the iPad camera with a free magnifying app to read menus and other short stuff. [click here for a good article about the features of the iPhone and iPad that make them so good for those with low vision.]

If I want to read a book, I use BARD, also an app on my iPad.  Remember you have to be declared legally blind to get BARD. If you are not legally blind you can buy e-books and zoom them. [Read more about BARD and e-books in Sue’s Page Around the World of Books.]

I am over my 500 words so I will just quickly mention two other things. The first one would be Zoom Text. If you are working on a desktop computer – or at least using a large monitor – ZoomText makes life much easier. Navigation can be a bear since half the page is off the edges, but at least you can see the half that is on the screen.

Last but not least is my CCTV. I use that nearly every day. Without it, I feel like I lost an arm. I can write checks and notes using it. I can read articles for pages. It gets used.

Once again, my CCTV was $3500. Mine was paid for because they wanted to keep me working. You may not have that opportunity. However, spare $3 or 4K? The investment, in my mind, would be worth it. [There are SO MANY CCTV products that we can’t review them at this time.  Search the Internet, ask your Low Vision Specialist or other resources.]

That is it. That is barebones what I actually use after two years being a VIP. Hope the info helps.

Oops! PS I forgot my Max TV glasses! No TV but they are great for doing classroom observations, seeing my students in class and watching movies and live theater performances.

written Jan. 31st, 2018


Next: Sue’s Toolkit – 2 Years Later – Part 2

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Battle of the Apps: Part 1

Good morning! On to my assignment! Lin wants me to check out Seeing AI. That is version 2.0. [Seeing AI is available for Apple IOS but not Android.  It’s now available in 35 different countries including the United States, Canada, Australia, New Zealand, India, Singapore, Hong Kong, and in all of 28 countries of the European Union.]

OK. I lied. I am going to start with the light perception section of this app. I am still in bed, or rather back in bed, because my throat feels rather raw. The light perception part of the app is something I can check out lying here.

Focusing on windows, dark corners, etc. I found it works well. The tone was high when looking out the window and much lower when focused in the corner. Exactly as advertised.

Now this feature is only for a limited number of the visually impaired. The great majority of the visually impaired retain light perception. It is when the entire eye is absent or when the entire retina has been destroyed that you lose light perception. Those of us with AMD generally don’t have to worry. It is, however, a nice feature for those of us who don’t perceive light.

My iPad has iOS 11.2.1 as an operating system. That is important because my old color ID app, aptly named Color ID, is not supported In iOS 11 or higher. I cannot compared it to Seeing AI if I cannot open it. Seeing AI wins by default!

Seeing AI does well with the basic colors. Red, blue and pink were identified easily. Chartreuse was identified as green and in low light, navy blue was seen as gray.

Seeing AI will also identify two colors on a screen. A white tissue on a red couch was said to be brown and gray. A little off due to the light levels. Seeing AI warns about low light so you need to make sure you have good lighting before using the app.

Now moving on to short text. I used a business card from my travel agent and compared the reading by KNFB Reader to the Seeing AI reading of the same card. Remember KNFB Reader is $100 or so so if money is a serious issue, that may make your decision for you. Seeing AI is free. [Lin/Linda: KNFB Reader is on sale occasionally.  Sprint is now offering it free for those who use their wireless service!  I recommend that you follow it on Facebook; at least check out their FB page before you go to pay for it. KNFB Reader is available for Apple, Android and Windows 10.]

With KNFB Reader you take a photo and the text is read to you. Seeing AI does not allow you to photograph the Short Text. Seeing AI app started to read and pretty much jumped around on the card as it read. Was that my inability to keep the iPad still? Maybe. Lin said she had no problems and what she read in the help option was the Short Text feature will read what is clearest first. It is also possible that with my eyesight I did not get a clear fix on the material. Check it out and see what happens for you.

KNFB Reader has a feature – the icon is an eye – that will tell you how well centered you are on the page. I did not see that on Seeing AI. Doesn’t mean it is not there. I just did not see it.

In both cases there are computer voices with pretty bizarre pronunciations doing the reading. It is too bad they cannot make some of these trainable as they have with speech-to-text. Those of us in fields with specialized vocabulary would find that helpful.

Anyway, barring someone telling me an easy way to get to the camera and a way to keep your image still for short text I prefer the KNFB Reader.

Back again later for the other features!

Written December 25th, 2017

Continue reading “Battle of the Apps: Part 1”

Jabbering

Greetings everyone! First of all, thank you for all of the birthday wishes [July 17th] and kind comments! I am amazed and overwhelmed. I sit here in my sun room, just kind of hanging out and having weird thoughts, and I sometimes forget there are real people reading the stuff. Probably better that way. I might become self-conscious. Not that that has ever happened in 64 years. No filters here. As in really NO filters. My mother used to ask me why I could not just LIE sometimes.

That said, nothing big planned for the b-day. Fighting rot and decay. I have my first physical therapy appointment for the rotator cuff tendinitis. Also, the container for the sand filter cracked and nicely soaked the garage with pool water so I am having the sand container replaced tomorrow.

Have you ever noticed you spend the first 40 years of life building and the next 40 trying to keep everything in working order?

My friend, the exercise enthusiast, and her family treated me to an escape/puzzle room last week. That was fun. We did the ‘tornado’ room. The premise is you have been hit by a tornado and you have to figure out how to open a locked door and escape before a second tornado strikes. This all involves finding clues and things you will need as well as figuring out a lot of ciphers. We ‘died’. We were only about ¾ of the way by the end of the hour and the second ‘tornado’ hit.

It was low light – a problem – and there were clues I could not read, but this is a team (up to 8) activity and I had people to do the fine seeing. I still have a brain and could sleuth out a lot of clues as well as have input on how to solve the puzzles. Enjoyed it. Would go again.

Low vision does not have to mean no fun.

And continuing to just jabber along here, I downloaded the Near Sighted VR app from Google Play. Lin sent me the cardboard goggles last week. My husband cut the hole for the camera to see through so it would actually be somewhere near centered. I downloaded the app. Nothing to that and the app is free, free, free! [Lin/Linda: it worked better for Sam at The Blind Spot and he says with some upgrades which he suggests, he thinks it will be an ‘awesome app’. Click here to see his review of it on YouTube.]

Not as enthralled with it as I was hoping to be. Not sure if the new phone (Hello, Moto!) does not have a decent camera or what the problem is, but I thought the image was pixel-y and a little wavy. Being a great one for motion sickness I am not sure I could use it very long without having an ‘incident’.  [Lin/Linda: there is also an app for iPhones called SuperVision Cardboard.  Click here for more information.]

Once again, although I would love to believe I am, I am not the final word on this stuff. I think we need other input on these products. Please let us know if you have tried anything and give us your input. My pans may be your picks and vice versa.

Last thing: I ran into a little gem called BookBub. They offer free and deeply discounted email books. Lin says she has used it for years and it is a good resource.

When dummy here set up her NaturalReader she failed to click on Kindle as one place she wanted to be able to download from. Cannot figure out how to go back and change the setting so I am in the process of also downloading the free version of NaturalReader. Hopefully I will be able to get into my Kindle account that way and give you info on how it works.

Once again, knowledge, insights, opinions? Please share. Support the cause. We are in this mess all together. Continue reading “Jabbering”

This and That

Hey, guys! No idea what I am going to write about. I will just start and see what comes out. I have an hour to kill before going to teach class.

Told you I renewed my driver’s license yesterday. That was sort of stressful. I tried to do everything ‘right’ so I did not end up ‘outing’ myself. I would not want to try to pass as fully sighted everyday. I guess the truth really does set you free!

Remember: I don’t drive. My stubbornness and vanity are not worth someone’s life. I just needed to feel like a ‘big girl’.

After that I went and made a physical therapy appointment. I need to bring this shoulder back to health. Right now it is cramping my style worse than the eyes. The eyes don’t hurt! The shoulder does. I thought I was being good, but it still aches. Try trying to be active but not using one arm. Grrrrrrrrrr……

After kayaking on Sunday (yes, I know I have a bum shoulder. It reminds me hourly), I went to the phone store and got a new cell phone. Two and a half hours later and I was out of there. In that time I had to go potty at least once. If the process went on for another half an hour I was going to ask them to order take out!

Anyway, the point is this: phone store people are very helpful. They will spend the time with you. I still have a lot of stuff to do on the phone but Ron, the phone store guy, gave me his number and he promised to walk me through it all. As soon as I figure out some of what the hey I am doing on this phone, I want to load the augmented reality app and see how it works as a magnifier.

If your phone is slightly older, like mine was, it might behoove you to invest in a new one. On the new one, Ron turned the magnification up all the way. If I do the three taps thing after that, letters can be ¾ of an inch high. The easier to see, my dears.

Three taps thing? Yep. It is possible on Android phones to tap the screen three times in quick succession and everything magnifies. Three times again and it goes back down. No one may have showed you that little trick. The younger generation believe tech knowledge is innate, not learned. They think we should know.

And now news some of you can actually use, they are finding more evidence that we may be better off doing genetic testing before we start drug therapy. PubMed recently ran an article citing research that the risk allele of the Y402H polymorphism in the CFH gene is related to less favorable outcomes when using bevacizumab (Avastin) or ranibizumab (Lucentis). (Quiz: What does -zumab as a suffix tell us? Answer: humanized antibody. I learned something!) The ‘in English’ version of that is this: if you have a certain variation on the complement factor H gene, your response to those drugs will be less than you expected when it comes to wet AMD control. If you are not getting desired outcomes with either bevacizumab or ranibizumab, you might suggest your doctor try another drug instead. It appears that, in some cases, if one of those drugs doesn’t work well, the other one won’t work well either.

Well, I guess I should stop prattling here. Need to get ready to go again. Type at you later!

written July 12th, 2017

Continue reading “This and That”

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:

Lions & Tigers & Bears…Oh My!

Home from ‘the City’ safe and sound. I was really no help with sign reading. None at all! However, I was able to program the phone’s GPS and help in areas I did know. I was also able to read site maps with my reader. [Lin/Linda: ‘the City’ is New York City.]

At The Met Cloisters I could use my telescopic glasses to look at the art ‘close up’. Beautiful tapestries, paintings and carvings.

I talked to one of the guards about whether they would be more handicapped accessible any time soon. The Cloisters is built on multiple levels and my companion for this jaunt has hip and heart problems. As far as vision is concerned, the descriptions were still on printed signs.

Many museums are going to QR signs. QR stands for quick response. They are the little ‘barcode’ squares you can scan with an app on your iPad or iPhone and get amazing amounts of information, even videos! Since you don’t have to actually stick you nose against a sign – your iPad will tell you the information – the system is much more low vision friendly.

Museums using the QR system include the Smithsonian and the National Museum in London. There are also a number of more local museums using the system. You can get the QR reader app from the Apple app store. I was going to try mine yesterday but The Cloisters is not fitted with the system. [Lin/Linda: there is a QR Code Reader for Android from Google Play.]

Since the rain was coming down in buckets – so much for that forecast!- we opted for the Bronx Zoo rather than the gardens. Unfortunately the zoo does not yet have the QR system either. However, for you who also have mobility issues, the zoo is very handicapped accessible and allows scooters and wheelchairs.

I saw the lions and tigers and bears, oh my! We also saw the gorillas who were incredible. With the more humane construction of zoos, I several times could not locate a creature in the foliage. Telescopic lenses helped some with that, but not a lot.

Bottom line on this? We had a successful day in the city. People were incredibly kind and friendly and we struck up conversations with maybe a dozen people. The museum and zoo have ways to go to become more accommodating for us with disabilities but all together it was not too bad. Since my companion had to do all the driving, I paid for gas and lunch.

Would I go back? Yes. Probably not The Cloisters because that was my second trip there and it has sort of ‘been done’ for me. We only got through about half of the zoo. I did not see the snow leopard or get my camel ride! Those things can happen another time. The Botanical Gardens could be that day, too. Some day it is sunny and pleasant.

What have been your experiences with different venues as a low vision person ? Any praise or pans for a place? Any suggestions for a traveler? Let us know!

written June 18th, 2017

Continue reading “Lions & Tigers & Bears…Oh My!”

How Many Favors?

One of the problems with being a cockeyed optimist and a Pollyanna is I always expect good things and relatively easy sailing. When that doesn’t happen, frankly, I become perturbed. I HATE to be thwarted.

Last evening I started downloading Golden Prey (book by John Sandford) from BARD. It has stopped several times since then.

I think it has to do with too much in my iPad memory. My ability to clutter up my environment extends to technology and cyberspace!

Another case of “do as I say, not as I do”. Deleting books you have already listened to is fine. You can always get them again. FYI for you non-technical savvy folks, your devices will run faster if you do.

My schedule is changing for the summer and I have to figure that out. Transportation will only pick up until 7 pm. After that my coach turns into a pumpkin! (Of course, for some of the ‘lemons’ I have ridden in, that would be an improvement!)

I have been picking up signs a woman who has dutifully transported me up for the last 15 months has gotten tired of it and needs a break. Changing my schedule so that I can ride my bike at least some of the time and take up some of the rest of the slack with transportation should work. I also have a co-worker who has started to take some of the same classes and who has offered to haul me. Also another gym friend.

People truly are wonderful and generous but they are not saints. Problem becomes they hate to let you down and will keep on helping even when it is no longer convenient.

I am starting to think I need some sort of rotation system. I already try to limit how many times I impose in one week. I try to keep it under three rides – counting someplace and back as two – a week for any one person. Except my husband, of course. He drew the short straw when he married me!?

Once again there needs to be some sort of etiquette book for this! Any ideas about the ride dilemma? How many favors for the old, visually impaired chick is too many?

Still haven’t got the new pool liner. Got that call at 7 am as the rain poured down.

And my frustration that you may actually care about….Aipoly, or at least the free version I downloaded, did not live up to its hype! My diet Pepsi bottle was “a wine bottle” (however, that is a thought!) and my glare glasses were “one string of headphones”. I got too close to my sandal when I took the photo so that was “a basket” although when I pulled back and tried again, Aipoly got it right.

Now, in all fairness, I am cheap. The word free can be music to my ears. There is an Aipoly version for slightly less than $5 per month. That one is supposed to be much ‘smarter’. Since I am cheap and not in need of such a service yet, and since I can never remember to cancel those damn ‘free’ trials, I’m not downloading it. If you are in need of such a service and can remember to cancel a free trial, try it and get back to us please.

Type at ya later! Continue reading “How Many Favors?”

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

 

 

 

 

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?”

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

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

WOW, there are a LOT of pages!  We want to help you access them.

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 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
  3. To get a list of pages by MONTH and YEAR (not updated)
  4. To get a selection of Sue’s Best Pages and Musings
  5.  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)
  6. If you want to access pages by a particular KEYWORD, look to the right of this page or at the bottom and choose a keyword (for example, sunglasses, vitamins, etc)
  7. You can also enter a word or phrase to SEARCH the pages in a Google-based search
  8. Below are the MOST RECENT PAGES

Most Recent Pages

Pages for 2020
Pages for 2021

 


Sue on Assignment

Starting in September 2018, Sue’s been doing research and writing on special topics.  Do you have a topic for her? If you do, let me know at light2sight5153@gmail.com.

Current topics include research on several supplements (bilberry, resvertrol, astaxanthin, CBD Oil), independence (what it means to Sue, how to get food to come to you), AREDS2 & geography atrophy, how to conduct an experiment on yourself, non-genetic causes of MD, research on calcified eye spots, money for assistive technology, eccentric viewing, high altitudes & the eye, coping fatigue, research about mitochondria.

Sue on Assignment – Special Topics


Sue’s Musings

Too many pages to read? Here are some of Sue’s quotes with links to her pages.

Sue’s Musings: Then and Now – Part 1 Revisited in 2018

Sue’s Musings: Then and Now – Part 2 Revisited in 2018

Sue’s Musings Then and Now – Part 3 Revisited in 2018

Sue’s Musings Then and Now – Part 4 Revisited in 2018


Sue’s Best Pages

It’s hard to reduce Sue’s many pages to her best ones but these are ones that have been highly rated by our readers in several categories.


Sue’s Toolkit – What She Uses to Do What She Does

Sue’s Toolkit – 2 Years Later – Part 1

Sue’s Toolkit – 2 Years Later – Part 2


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