Diffy Cults

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

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

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

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

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

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

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

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

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

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

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

Doing Beers with Grandma

Hey. Sort of blah today. Still getting used to the idea of no dog.

I am a spoiled brat and was sort of disappointed with my showing at the photo contest. A third and an honorable mention are not at all bad. I just have high expectations.

For some reason we are back to high Summer. It was over 90 Fahrenheit today, September 25. About the same yesterday. Along with mad dogs and Englishmen I have been out in the midday sun and I am hot! My body was gearing up for fall. Not feeling like fall now!

Then of course, since we are going to be away, my workload just more than doubled. Let’s give Sue another six kids to test. She’s going on vacation!

Oh well, better than never having a dog, six feet of snow and no interesting job. Although sometimes I feel a little too ‘blessed’.

One of the topics in the teachers’ lounge today was bizarre things your voice recognition software tells people you said. One of the milder ones was how “doing beets with Grandma” became “doing beers with Grandma.” Well, some grandmas might throw back a few. Just not my colleague’s.

I know fully sighted people produce text and other written things that make no sense. I send out plenty that is alternating perplexing and/or amusing and/or frustrating. Some of my mistakes I manage to catch. That said, though, the question in my mind became how do truly blind people proofread? After all, I may need the skill one day. [Lin/Linda: I wish I’d kept a list of all the crazy things I’ve gotten from Sue since we started this!]

Back in 2011 Ryan Cordell suggested using text-to-speech to read things back to yourself. He explains how on an Apple OS X device you can have what you wrote read back to you by just making a few changes in the settings. This can be helpful if you are composing reports or letters on your computer.

Stephanie Diamond wrote about using Dragon NaturallySpeaking to proof read. Diamond also suggested text-to-speech for proof reading. Dragon works on PCs and Macs. Since NaturallySpeaking records your voice as well as recognizing it, another option is to listen to what you really did say. Diamond added you can send documents received from elsewhere to your PC and have NaturallySpeaking read those too. [You’ll see this software as Dragon Naturally Speaking, too, with a space between Naturally & Speaking.]

And if you want a human opinion on not only the spelling and verbiage but other aspects of your writing, remember Be My Eyes (BME) is an app that connects blind people with sighted volunteers via live video chat.

According to an April, 2017 Lighthouse Media publication, Be My Eyes now has half a million volunteers! Whom you get when you call is random. You can call unlimited times.

No one is pushy or opinionated unless you ask them to be. Want to know if that shirt goes with those pants? You can ask that and get an opinion. And no one will ask you why you ignored the advice.

According to the article, BME is looking for more users. This could be a match made in Heaven.

So, there are a few ideas for proofreading. But please don’t get too perfect. I find some of the errors amusing!

written September 26th, 2017 Continue reading “Doing Beers with Grandma”

Time to Watch Some TV

Hi, guys! Lin is crazy busy with all of the new FaceBook members so she asked me to do some work! I have an assignment. Actually, a couple of them. Oy. [Lin/Linda: ah, who started this project, eh? ::grin::]

My first assignment is to put together a page on watching TV. Now personally, I watch practically no TV. TV watching is something I know nothing about.

Like I am not a domestic goddess, I am not an entertainment maven. However, I do a wicked web search, so let us see what the experts say!

First of all, no matter what your parents said, watching TV close to the screen does not – I repeat, NOT – damage your eyes. I have it on good authority, the American Academy of Ophthalmology says so.

What does that mean for you? Move up as close as you need to. Magnification is just about the best thing we can do to help us see better right now and getting closer is a way of making things appear bigger.

And speaking of magnification, Max TV glasses are called Max TV for a reason. They were made for watching television. If I do have something to watch on a screen, this is the way I usually go.

I realize some of this stuff is expensive. I got my Max TV glasses for free. You may have to pay $170 or about a third of that for the knockoff brand. Either of those sums can be prohibitive.  [Lin/Linda here: I guess Sue forgot that she wrote a page called Comparison Shopping where she talks about less expensive MaxTV-like glasses that she found.

The Near Sighted VR app for your Android cell phone magnifies and it is free. I just tried it again with my cardboard ‘goggles’, however, and I still get a shimmer. As motion sick as I can get, I am not doing a shimmer (Shimmy, yes. Shimmer, no). Since downloading the app and trying it on your cell phone will cost you only time, I would suggest downloading the app and trying it. Lin can give us a link to the cardboard box ‘goggles’ that are needed.

Those are your magnification options. Oh, also remember if you need a new TV, get the biggest screen you can afford. Ask the salesperson about good, not famous brand products.  And in this instance, size really does matter!? Oh, my! Did I say that?

Now for this stuff you may need a teen. Preferably a male, but some girls are excellent at this too. Not sure if that is sexist or not. Oh, well… [Lin/Linda: in my household, it is ME who takes care of the electronics…watch what you say!]

Many, many TV shows and movies now come with audio description. I did a couple of pages on this and Lin can provide the links. Pretty please and thank you! Just like closed captions, audio description is embedded and you have to enable that function. Do I know how? Of course not. That is why I would need to borrow a teen from someone. They could do it in 30 seconds. It would probably take me 30 hours!  [Sue’s pages on audio description: Enjoy the Show! and Wanted: Tech Savvy Teen.]

Just some thought about getting more out of TV even when you have low vision. Anyone have any other ideas?

Oh, PS, remotes. Keep them in the same place at all times! Otherwise, your program can be over before you even find the dang thing.

written August 16th, 2017 Continue reading “Time to Watch Some TV”

Managing Medications

Never really thought about it in quite this way, but VisionAware has a series of ‘getting started as a visually impaired person’ posts. Sort of like a starter kit for a hobby. Instead of scrapbooking or constructing terrariums, we get visual impairment. “Oh, yes, did I tell you? I’m taking up visual impairment. This book says that in just six easy lessons ($19.99 each) I can have the start of a very promising visually impaired person. And the book says I can do this at home in my spare time!”

Uh, yeah. Really did not need another hobby…especially THIS one.

That is not to say, however, that a ‘how to’ series for vision loss newbies is not a fine idea. It is such a fine idea I am going to borrow shamelessly from them in writing this, and perhaps another page.

The page I am borrowing from is entitled Products and Devices to Help You Identify Your Medications. In that article they cover all sorts of clever ideas for trying to make sure we don’t poison ourselves. I vote for that!

Some of the suggestions in their article are as simple and low tech as keeping a black tray in the bathroom so you can have contrast to see your pills. Others are more high tech. The one I am going to focus on is a high tech option: audio description.

The VisionAware article mentions several different options for audio description devices to use with your medications. There is one manufactured by AccessaMed and there is another one called Talking Rx. But the one I want to talk about is ScripTalk. Why? Can’t write about everything in 500 words.

According to a disabilities lawyer (lflegal.com), many pharmacies are now offering talking labels and label readers for medication bottles. The lawyer’s website gives kudos to a number of chains. (We will ignore the thinly veiled attempt to drum up litigation business.)

I will get back to offering some chain names in a minute but first let’s talk about how this works. Apparently your pharmacist reads the label information into a device that digitizes the information and puts it on a little label that he attaches to the bottle. When you get it home, you have a reader that will allow you to hear what the pharmacist said.

Now, ScripTalk is offered through CVS, HEB, Walmart and Humana. It is a free service to satisfy the requirements of ADA. Of those four corporations, however, the article lists only the customer service numbers for CVS and WalMart. Got a pen? The CVS number is 800-746-7287. The Walmart mail-order pharmacy number is 1-888-237-3403.

Just because you are not in the States and subject to the ADA, does not mean you cannot get medicine bottle labels that talk to you. I have it on pretty good authority (the Vancouver Sun online from 10/07/2016) Shoppers Drug Mart was sued under Canadian accessibility laws and now offers ScripTalk, and free use of a ScripTalk reader.

In the United Kingdom Boots started offering talking medicine labels in 2006. (My, but the Colonies are Johnny-come-latelies on this!) Not exactly sure what is happening on this issue in Australia. Most of what I found there was about a general relabeling of all pharmaceuticals. Anyone know?

Call your pharmacy and see what they offer in the way of audio description labels and readers for your medications. If they have nothing it might be good to remind them this is an accessibility issue. Nothing then? I heard of this disability rights attorney….?

Have a great evening. Don’t accidental poison yourself.

Written August 11th, 2017

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Keep an Eye on Your Eyes

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

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

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

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

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

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

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

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

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

Written August 9th, 2017

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BlindSquare App

When I was at the Summer Academy a couple of people mentioned they were navigating with an app called BlindSquare. They asked if I used it and I was almost sheepish to admit my vision is still good enough to navigate with plain old Google Maps.  It is surprising how social norms change from place to place.  I felt like being blinder would have given me more ‘street cred’, but what the hey, I got by.

BlindSquare appears to be the app VIPs (Visually Impaired Persons) in the know use to navigate. According to its advertising BlindSquare is the “world’s most popular accessible GPS-app developed for the blind and visually impaired.” It is said to describe the environment, announce points of interest and also alert you to street intersections as you travel.

The home page says BlindSquare is self-voicing and has a dedicated speech synthesizer, whatever that means. There is an audio menu that can be accessed with the buttons on the side of your phone. Seeing the screen is not required.

BlindSquare announces your progress towards your destination. It marks your spot (sounds like Beastie Baby!) and can lead you back should you want to return. The app opens with voice over. BlindSquare ‘understands’ a variety of languages. These include many of the most ‘popular’ European languages as well as some others like Finnish and Romanian. The farthest east they go looks to be Turkish. The farthest south they go looks like Arabic.

Reading the comments it seemed to me the developers of BlindSquare are awesome people. They responded in the affirmative to just about all of the suggestions and have been adding languages right along.  Updates are added regularly.

Now for the bad news. BlindSquare is $40.00 in the App Store. There is a free version called Blindsq Event  available in the App Store but it is seriously pared down from the for a fee version. The pay version featured three or four pages of options and Blindsq Event featured one. I would say what  do you want for nothing, but my answer would be ‘the World!’ so I know better than to ask that question.

I just downloaded the free version and will play with it later. As always, I would love to have others’ opinions. Please download it and let us know what you think.

Those who have the pay BlindSquare, please chime in!

written August 2nd, 2017

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Talking to Your ATM

Before I get on the topic of this page, I want to give you a quick FYI. If you remember, I mentioned my monocular was full of condensation. Could not see a thing! Although I think many of you know this anyway, I just wanted to remind you: don’t throw it away; dry it out. I plopped mine down in a nice, warm patch of sunshine and it is all better now. Hair dryers work, too. Microwaves do not. Monoculars have metal on them.

And from low tech aids to high tech….automated teller machine, ATMs, money machines, call them what you will, they are practically ubiquitous to modern life. Problem is, most of them require you to see and read that glary, little screen. Yippee.

I have sort of memorized the one I generally use. As long as the questions are the same and the answers are in the same places, I’m good. When I first lost a lot of vision and I had not mastered the routine, it was nasty.

If you are still able to see, don’t just mindlessly push buttons. When you use an ATM, think about what you are doing and master the sequencing and positioning. It will serve you if you lose sight later.

You may not have noticed but many, many ATMs have jacks for headsets. American Federation for the Blind reported there are 100,000 ATMs that are able to be operated by voice just in the States alone. All you need is a headset with a microphone. Plug in and do your banking. The ATM will ‘talk’ to you and guide you through the transaction.

I found a 2012 article from the Telegraph reporting Barclay’s had installed audio technology in three quarters of their cash machines in England and Wales. They should be farther along in the process now. The technology was reported to work with pretty much any standard headset.

The article went on to say Barclay’s had made the modifications when they realized people were being required to share security information in order to make simple transactions. They were also concerned about “small and fiddly” buttons – you guys know how to describe things? – and inconsistencies among machines.

Not sure how many other banks are actually providing talking ATMs. Be sure to inquire if you are interested – and even if you’re not. It is always good to give these people a nudge.

Prashant Naik did a nice comparison between the talking ATM and ATMs with public voice guidance. He reported that each screen is voiced but everything is private because you are hearing it through the headset. If you want to blank out the screen, you can. Naik also remarked upon larger fonts and better contrast if you do chose to use the screen. Naik in fact wrote 24 comparison points in his chart. He concludes the talking ATM is a superior product.

And btw, Naik is writing about India so these things are available internationally.

Once again, I have not tried an auditory ATM myself. I am telling you what I have read. I will occasionally try something and report but at the moment I am functional with what I have and if I bought everything – like headphones with a microphone for example – I would soon be in the poorhouse. Still hoping for some audience participation, guys. Who has used an auditory ATM? Stand and report!

written July 30th, 2017

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A Cat Eating a Shoe

Slowly getting my stuff together. The change in phone carriers and the accompanying set-up have been accomplished. Even with ‘plug and play; I am just about hopeless to begin with and then add a visual impairment. Oy vay. The pool that was green because the pump was down is blue again and six days into the two weeks left to live prediction, Beastie Baby is acting like she never got the memo. [Sue wrote this in July.  Beastie Baby has since passed away.]

Not arguing with it. It is often good to be unmindful of coming sadness. If she can enjoy short walkies and cheeseburgers (yes, spoiled dog), why not?

If there is no averting disaster I see nothing wrong with dancing on the deck of the Titanic. Eat, drink and be merry for tomorrow we may die.

Planning my next ‘adventure’. Since the dog is elderly, etc. we really don’t want to leave her with a sitter when I go to Penn State. That means my husband drives me down and comes right home. I get to get a bus home. Happy, happy, joy, joy. My choices are taking eight hours – including a 3 hour layover – to travel 100 miles and end up at the bus stop in town here or riding the bus two hours to a town 45 minutes away and having my husband come rescue me there. I vote for option #2!

“You can’t get there from here” may not be a totally accurate statement but it seems pretty close. I will let you know how I do. I would like to say America allows freedom of movement for all, but I have a feeling things are not going to be that easy.

Lin asked me to download Seeing AI. Apparently it is all the rage right now and everyone is all atwitter about it. That said, apparently I am not that easily impressed. Seeing AI seems to combine the functions of several different apps into one. It does a better job describing scenes than some other apps, but bottom line once again is, it needs work.

Seeing AI did a nice job on identifying things on the fridge door as “food in a refrigerator” and the Beastie Baby truly was a “brown and white (and black!) dog on a bed”. Beyond that, we had some problems.

Two pairs of my husband’s shoes were “a cat eating a shoe”. Giggle. The app identified the concrete around the pool but failed to note the black inner tube or the pool just beyond. If I were totally blind I could have easily expected clear sailing, tripped over the inner tube and gone for an unexpected swim! Although the examples in the ads were things like “a 20 something girl smiling”, Seeing AI identified my colleague, a 30 something smiling girl, simply as “a person”.

I guess I have to say excellent start, good attempt, but I would not want to depend on this app to interpret my world for me. Too many chances to trip over inner tubes and end up swimming.

The app is absolutely free in the Apple App Store . The price is certainly right! Download it and try it for yourself. [It isn’t yet available for Android.  It was originally only available in the US and Canada but has recently been made available to people in the UK, Ireland and Australia.]

Check out a good review by Sam of The Blind Life on YouTube.

written July 19th, 2017

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Someone I Am Not

Passing. Those of you who are into sociology or history know what that is. Wikipedia defines it as the ability of a person to be considered part of an identity group other than their own. Racially mixed slaves could sometimes pass as white when they came north. Over the years many gays have passed as straights. The term used there is generally ‘in the closet’.

I can still pass as a fully sighted person quite well. Yesterday I was at the doctor for my shoulder. Dr. Sue was right, rotator cuff tendinitis.

When I told the real doctor there were some things I could not see because of my vision loss, the doctor told me she never would have known. I passed well.

Today I went to have my driver’s license photo taken. I had everything ready. I sat there and listened to every question the people before me were seeing on the screen. I had my answers down cold! Yes, I am an American citizen! Yes, that is my date of birth. I looked at the yellow blob the photographer said was a smiley face and smiled for the camera. I passed as a person with acceptable vision.

Now, don’t get me wrong, I am NOT driving. Probably could. Slowly on familiar roads I could (no matter what my husband says!) I play this game in which I watch for on-coming traffic when I am in the van. 98% of the time I am right as to how many cars are approaching. It is that 2% that keeps me from getting behind the wheel.

When I told a teacher from school (you run into people you know at the darndest places!) what I had just done, he said it made sense to him to renew my license. Better safe than sorry. He thought in an emergency I could still drive. Yep, but that was not my main reason for renewing my license.

I renewed my license so I would not feel like a second class citizen. One of the same reasons blacks tried to be accepted as white and gays have tried to pass for straight. I did not want to be relegated to the back of the bus! Metaphorically speaking, of course.

Learned and thought about a couple of things. First thing: trying to pass is stressful! I was half expecting to be ‘discovered’.

The second thing was a something I realized. Light bulb moment. There is black pride and gay pride but no low vision pride! Why did I even feel the need to pass? I obviously don’t think the visually impaired me is ‘good enough’. I need to add symbols of what I consider to be a complete adult. Hmmmm.

THAT is something for a visually impaired support group to mull over. Thought I would throw it out in a moment of stark honesty and see what you think. I would suspect other people have felt ‘less than’ as well.

The other reasons I renewed my license are me being both practical and ever hopeful. Driverless cars are coming. It would be awesome if they were available to the general public in the next four years before this license expires. What if you have to be a licensed driver to drive one? I should have a valid license! And what if a miracle happens and they find a way to either biologically or technologically restore my sight? I need to be prepared!

So, just shoot me. I spent part of my morning pretending I was someone I am not. I passed. Pretty stressful actually. Between the shoulder pain and that, I need an early nap time. Tomorrow, I am back to being visually impaired.

written July 11th, 2017

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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:

Holy Steve Austin, Batman!

“We can rebuild him. We have the technology.” – quote from the 1970s TV show “The Six Mission Dollar Man”.

Now the Pentagon is looking to equip American soldiers with bionic vision! Holy Steve Austin, Batman!

Granted, that might be something we question the wisdom for, but hold on, it is possible we might just benefit!

Lin found an article actually from 2015, but prior to this, the information had slipped right past us. It seems they have been working on contact lenses for macular degeneration. Anyone interested in becoming a cyborg?

We are going that way of course. Pacemakers, neurostimulators and wearable technology are all pointing in that direction. However, some of the wearable technology is clunky and well, ugly. These things go in your eyes and no one will be the wiser. Only my ophthalmologist knows for sure.

Right now everything is experimental. It will probably not come to fruition for several years, but the concept is intriguing. The lenses are a little thick and they don’t allow the eyes to breath as they should. They are not comfortable enough to wear for extended periods.

What is cool about the lenses is you can switch back and forth between 2.8 x magnification and regular vision. Blink one eye for magnification and the other to go back to normal view.

We will keep watch for developments in contact lenses as well as all, other areas of endeavor. Lin commented today on how crazy fast the research and discoveries have been coming.

I know I sound like a broken record, but there is much reason for hope. Together we WILL break the back of this thing.

And since that was less than 300 words, what else is happening? Well, I found an article on lutein. Lutein is a yellow pigment produced by plants. Although the assumption has been lutein is good for your eyes, it is thought to protect against light-induced retinal damage. The article, Safety and Benefits of Lutein, published by the National Capitol Poison Control Center, suggests a great deal more research is needed. This is particularly true for very large quantities of the substance. So far the only side effect known of lutein is it sort of turns you yellow.

According to the article, AREDS did not find lutein to have much effect in slowing AMD. However, there are larger amounts of lutein in eye vitamins than in basic supplements. Go figure.

Right now it appears they have not found any evidence to suggest lutein is harmful but they likewise have not found any evidence that says it is particularly useful, either. As in most areas of life, moderation appears to be the key. And remember, if you start to turn yellow, that is too much! Continue reading “Holy Steve Austin, Batman!”

UK Volunteer Wanted!

I am looking for a volunteer in the UK. This is an audience-participation event. Thinking it should be painless, but you never know ?.

To explain, I was surfing around, looking at some links Lin had sent me and found a bit of wearable technology called Sight Plus by Give Vision. Apparently this is a startup company that is doing pretty well. They have a Twitter page with a number of glowing commentaries. I found a couple of videos about a paralympic athlete and an eight year old boy with Stargardt’s. Pretty good stuff according to the clips. These goggles are supposed to be comparable in quality to other wearable technology and cost much less. (I cannot find a price, though). They are made with parts easily available. [You can click here for their Facebook page.]

But my point – and I do have one – is they give free demonstrations! I tried to sign up for one but they will only accept you if you live in the UK. Really! However, I have my ways to find things out.?

That is where you folks in Britain come in. I emailed the company and asked if we could send a ‘spy’ to try their product and report back to us. Just sent it and it is the middle of the night there so I don’t expect anything immediately. Just checking with you guys beforehand.

Presentations are on Liverpool, Sheffield, Exeter and London. The next one in London is June 19th. I realize that is cutting it close but I think they do their demonstrations monthly.

Any takers? Sign up is through givevision.net. Continue reading “UK Volunteer Wanted!”

Not Your Parents’ AMD

3 pm Monday and so far it is a good day. The pool guy is working on my new liner. The funny thingee on my tummy is a normal, benign growth and the transportation company got new vans with fancy logos painted on them. No more confusion with two dozen, white vans. Life is looking up!

Lin told me there was a conversation thread in the Facebook group about parents who struggled with AMD. People remember what their mothers and fathers went through and they are determined not to become like them.

I am reasonably sure my father’s vision problems were AMD. The more I think about it his father’s vision problems may have been AMD. I remember both of them using a handheld lens to read the newspaper as well as the really strange interpretations Daddy would have when it came to TV shows. I have no idea what HE was watching but it was not the same thing I was watching!

I have said it a couple of dozen times and I will say it again: this is the best time in the history of the human race to be losing our sight. Absolutely the best. You may not realize it. You may remember what you saw and think we are doomed to go there too but we are not. We really are not.

I tried a handheld magnifier for a couple of weeks. Not doing that again. They are very inefficient. I have my CCTV, my handheld reader and my iPad which can go in the Justand.

[Lin:Linda: To see what Sue uses on a daily basis, check out these pages: A Day in the Life and A Day in the Life:Work Day.]

I can get newspapers on my phone and books from BARD (there are other sources, too, as well as magazines which are available).  I’m able to take a picture of pretty much any text I want and my KNFB Reader will read it to me. The zoom feature on my iPad will allow me to read email and research pretty efficiently. ZoomText allows me to work. (refer to the “Day in the Life” pages above)

If I want to look at something a little distance away I can use my max TV glasses or my monocular. Not too bad.

Depending upon when Lin publishes this page, you either have or will be hearing about audio description services (coming soon!). If my father had had those for the TV we would have been “on the same page” a lot more than we were when we watched programs together. Audio description can also allow you to go to the movies and live theater and actually know what is going on.

Do I want to be losing my sight? Hell, no! This is not a walk in the park but it is not what Daddy endured either. Just the same he made it into his mid 80s and managed to take care of himself until other issues brought him down. If he could do it without all of the toys, I can do it.  [Lin/Linda: My dad had geographic atrophy & took care of my mother who had Alzheimer’s using several different handheld magnifiers & a few other low vision aids.]

Yet another reason to be optimistic is all of the exciting research happening. We are poised for a veritable explosion of treatments. Not cures, mind you, but treatments. Thirty years ago there was nothing.

[Lin/Linda: To see what’s in the research pipeline, click here.]

What can you do? Be willing. Use what has been provided. If you put that iPad your son gave you in the drawer you have absolutely no grounds for complains. Bluntly put? Your extra suffering will be your own damn fault.

What else? Volunteer. Sign up for clinical trials. Join support groups. Share your knowledge and skills.

Life – and this vision loss bit included – is the craziest thing you will ever experience and none of us get out alive. Make the most of it while you can.

Continue reading “Not Your Parents’ AMD”

App Update

Back to the Daniel Roberts article. Actually sort of back to Roberts himself. I just watched a video of him using the LowViz Guide.  [Lin/Linda:  we published Sue’s page Comparison Shopping on June 5th, 2017, where she talked about Dan Roberts.]

The LowViz Guide was basically Roberts’ brainchild. It is an indoors navigation system. Can’t find your way around the hospital or the cruise ship? The LowViz Guide may be able to help.

I say maybe because the venue – be it conference center, hotel or hospital – has to have been tricked out with iBeacons. Your smart device ‘talks’ to the iBeacons, the iBeacons talk back and your device tells you where to go.

(I find that only fair since I have told my devices “where to go” on numerous occasions!)

In the video Roberts demonstrated the app has not only VoiceOver capabilities but also gives you ‘hot’ and ‘cold’ signals. The ‘cold’ signal is very irritating as, I guess, befits a message that is saying “wrong way, buddy!” It would make me want to go the proper direction just to shut it up. (A perfect example of negative reinforcement for you psychology students.)

There is an informative article on the LowViz Guide on the American Federation of the Blind website. It does not say where the iBeacons have been installed and I got the impression the cost of installing these things is not small.

The LowViz Guide app is downloadable for free from the app store. [Lin/Linda: I don’t see an Android version yet.] If you can get a list of places with iBeacons and you are actually going there it might be fun to see how it works.

Another new technology I found interesting was Aipoly. The ‘Ai’ in the name stands for artificial intelligence, of course. Funded by Google, according to Natasha Lomas in a 2015 article, Aipoly uses computer vision and machine learning technology to recognize what is going on in photos you take with your device. Aipoly is supposed to be able to identify multiple objects in a scene. It is also reported to be able to identify the relationships between things in the photo. For example, Aipoly would say something like girl eating ice cream. It is sort of like Be My Eyes minus the thousands of volunteers.

The whole process can take as little as five seconds to have a scene described. The longest time is said to be about 20 seconds.

The most seriously cool feature of Aipoly -and one that will undoubtedly interest our readers in Massachusetts – is the system has the beginnings of the ability to identify facial expression!

As of the writing in 2015, the system was starting to be able to recognize very exaggerated facial expressions! It is not yet ready to describe subtle expressions but there is hope.

Be aware this system does not work in real time, but they are trying to get there. They are also trying to get it into as many hands as possible. I am downloading a free version from the App store even as I am writing this. They have also come out with an Android version. Not sure if there is a cost for that or not. [Lin/Linda: It is free, too.]

I will let you know how it works later. Taking some time to load. And, by the way, I don’t have to be the only product tester. Feel free to download it and experiment yourself. Continue reading “App Update”

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?”

Comparison Shopping

Good evening! I am doing some comparison shopping here. Lin and I were looking at some TV magnifying glasses at the request of a reader. We found the Eschenbach ones I have for $164 and another pair for $49.

What the hey, for $49, I will order them. The truth of the matter is, I am REALLY hard on parts. My CCTV has been replaced and then repaired. My handheld reader was smashed and I had to replace it. My max TV glasses have also been replaced once. And we cannot forget the crack I have in my iPad screen. Can you say “bull in a china shop”? The day is going to come that the people repairing and replacing my stuff are not going to be so understanding. Better have a spare available.

So, the $49 max TV glasses came today. I gave them to my husband to be my “comparison shopper”. Then we compared notes.

The Eschenbach pair is the superior product. They are heavier, possibly because they had solid temple pieces. The inexpensive glasses are not quite as “solid state”. When I leaned forward the telescope part slipped and I had to readjust my focus.

That said, I can see just as well through the $49 pair as I can through the $164 pair. Nice and clear at 2.1 magnification, same as the Eschenbach ones.

Moral of the story: if you are not hard on parts, you don’t mind adjusting the wheel regularly and you do not have $164 to spend the more inexpensive pair may be for you. They are manufactured in China by Joyutoy and are available, of course, on Amazon.

Those of you who are using assistive technology and have any comments on it, please share. I would like to do more of this but there is a limit to the funds and we still have not found a multi-millionaire corporate sponsor (although we remain forever hopeful?)

Moving right along, Lin sent me an article written by Dan Roberts, the guy who wrote The First Year: Age-related Macular Degeneration. Roberts apparently does a yearly wrap-up on the progress, medical and technical, that has been made in fighting and dealing with vision loss. I followed one of the links to Living Well with Low Vision and glanced through some of the technology.

Under text-to-speech readers was something called the Aries Smart Reader. Available from Enhanced Vision, the Smart Reader weighs under 5 pounds. The cost is $1800.

That is pretty much what I know about it. I have not seen it nor do I have a clue how well it works. For me, personally, it is going to stay in the warehouse. Two big sellers for me are portability and price. I have enough to carry and I do not have a spare $1800 to burn.

I have limited need to have text to speech capabilities at this time. When I do need them, I have my KNFB reader on my iPad. Zero additional weight and a $100 price tag. Of course, for some unbeknownst reason my KNFB ‘girl’ is Australian! No problem. The couple of Aussies I have met have been good people.

Again, I am speaking totally personally about preferences and have never laid eyes on this product. Different opinion? Let us know and we will publish it. Continue reading “Comparison Shopping”

Wanted: Tech Savvy Teen

On the hunt again. This is what happens when you give me free time…or more accurately when I need to write a psych report and I am NOT in the mood. (Thank you for giving me a reason for my procrastination!)

What I am hunting is how to set your devices to play the audio descriptions on movies. This is actually amusing because I may watch about three movies a year. Netflix? Most people love it but I have never subscribed.

That means we are again in uncharted waters for me. Good luck and may God be with you. Here we go.

Chatty Chelby has a YouTube video on how to turn on descriptive audio on Netflix and using the internet browser, Xbox 360, Android phone and iPad. She completes the job for all devices in a less than five minutes presentation. Seems easy. An example of audio descriptions was included in Chelby’s video and it was detailed all the way down to the ‘arc of light’ going over Cinderella’s castle in the Disney intro. So far so good. Thanks Chelby!

Accessible.org has a page on “How do I turn on captions or descriptive audio in my media player?” For those of you who are not computer literate media players are on computers. The article contains directions for several different operating systems. This article should be helpful if you watch TV or movies on your computer.

I keep looking for articles that will talk about standard DVD players in the USA. Not doing so well for the States but kudos to the Aussies and the Kiwis. They have a couple of informative sites on this matter.

Here we are! The Audio Description Project, “an initiative of the American Council of the Blind” has a rather large and imposing but quite comprehensive website pretty much covering everything in the good ol’ U. S. of A. when it comes to getting audio description on your device. DVDs are second row, next to the last. If you are as tech savvy as I am, you might want to borrow someone’s 14 year old son for this project. He should have it done in about 5 seconds. Me? I would swear a lot.

Now on to the UK!

Well, as usual, the Brits are more interesting than us Yanks! June 26th they are having a workshop called “Audio Describing Burlesque”! Intriguing. The workshop “tackles the challenges of describing risque dance performances with discussion and practice”. Is that practice in risque dance????? Fish and chips optional. I guess you don’t want all that fried food if you are practicing risque dance.?

OK. All fun aside, the BBC is supposed to provide 10% of their programming with audio description. A little paltry right now but I know the people who gave us Dr. Who will improve on that! And they have a website, Help Receiving TV and Radio that has a special section on audio description.

So, here you are, another assignment. Go out on the street and grab the first, tech savvy looking teen you see. Bribe him to set this up for you and you should have some idea what is happening on TV by this evening. Including the risque dance, of course. Caio, caio!

Written May 29th, 2017

Continue reading “Wanted: Tech Savvy Teen”

Time On My Hands

Memorial Day, 2017 and it has been raining off and on for all three days of the holiday weekend. Right now it is ‘on’ and raining hard.

I have been taking the opportunity to do some other things. For example, I pulled out all of the furniture in the sunroom and ‘really’ cleaned. All the while I was doing that I was listening to the latest Jeffery Deaver book, The Burial Hour. Good ‘read’. Love my BARD.

I also wrote the questions for the review game for DBT class. Wednesday is the last day of distress tolerance and we go right into mindfulness. Get ready for more ‘thoughtful insights’! Ha!?

And in other news, I have done some very basic cooking. Gasp!

If you have been following along you know some basic and not always flattering things about me. For example, I am a slob. Also, if God wanted me to cook, He would not have invented restaurants! Domestic goddess? Not me!

While I am not planning on retiring (and as of last week, no one was planning on letting me go! Praise be!), I am cognizant the time is coming I will be home with time on my hands. Also, on a budget that may not allow regular restaurant meals. Maybe it is time to practice (how about start to develop?) my culinary skills!

To that end – and also for a page! – I came upon what looks like a nifty little web site. The title of the site is BlindHow. This thing has links to other sites with cute little monikers like Cooking Without Looking and The Blind Chef.

But the site also has other stuff. There are links to just about every practical skill you can think of. Shopping? Laundry? Personal finance? They have links.

Speaking of audiobooks as I did above, I found a link entitled 91 places for free audiobooks online. If you do not quite qualify for BARD, you could probably find an audiobook site that is not as ‘exclusive’. La di da.

The site also has links to information on movies with ‘descriptive audio’. From what I gather, this is a system aiming to keep the blind guy in the back of the theater from asking “what’s happening now?!?!” in all of the suspenseful or sexy parts of the film when everything has gone quiet.

Anyway, following a link, I found a site called MoPix and sponsored by the Media Access Group. They have a list of about a dozen movie theater chains in the US offering headphones and devices that will allow you to access the description apparently embedded on certain flicks. The list of those was pretty long, too. [Lin/Linda here:  I found this link that says that MoPix has shut down. Their Facebook page had no recent posts. Sorry.]

I would volunteer to go and check it out for you but our local movie chain is on a short list of chains that do NOT offer the service. (Did you notice the local paper was not available over the phone either? What the…..?)

Oh, but if you don’t have cooperative local providers (dig, dig), the American Council for the Blind sells ALL of the DVD and Blu-ray discs manufactured with descriptive video since 1997. Do you need any special equipment? Not sure. Links for some of the movies take you right back to Amazon. I did not see a special offering of DVD with audio descriptions but I am legally blind; remember? May have looked right over it. [Lin/Linda here:  I do not think that you need special equipment for DVDs & Blu-ray disks but check here first to be sure regarding particular devices. ]

Anyhow, BlindHow looks like a winner. Problem is, it probably just took away all my arguments for a housekeeper and a cook! Dang.

Written May 29th, 2017

Continue reading “Time On My Hands”

Get Your Magazines

Not quite sure what I did with myself before I had an iPad. After making pancakes for breakfast, playing in the snow and helping my husband dig out – again – I went searching online. One thing I discovered was this: I love National Geographic magazine more than I thought I did.

The reason is pretty simple. Being at loose ends, I had rummaged through a pile of magazines and wished it were easier to actually READ them. Just for crap and giggles, I went online and discovered National Geographic print magazine subscribers get FREE digital access. Yippee!

It was fairly easy. I went to the support center and typed my question. What came up was a question from a subscriber asking how he could read more than one article online at a time. The site gave two ‘click here’s. One was USA and Canada and the other one was the rest of you guys.

They ask for your mailing address and your email address. They also ask for the subscription number. The subscription number is on the address card that comes with the magazine. It is the number directly above your name. You create a password and you are in. Easy peasy.

The site does zoom. Score! Once it was zoomed in I had some problems scrolling and also had some incidents of the ever delightful flying off the page, but all in all, not too bad. Better than not having Nat Geo. The photos are even better on the iPad if that could be possible. Also, no more nasty glare from the glossy paper reflecting the light on the CCTV.

I started searching for other magazines that offer the same service but did not have a lot of luck. My other subscriptions are Nat Geo Traveler and Reader’s Digest. Traveler would be assumed to have the same offer because it is a Nat Geo product. Maybe. Didn’t actually check. Reader’s Digest did not seem to have the same service. Pooh. At least I could not find it and that one I did look.  [Lin/Linda:  A Reader’s Digest subscription does give you both print and digital version. With National Geographic Traveler, you can get a digital only subscription or print only or both.]

Reader’s Digest disturbed me even more when I discovered they are not available for free on BARD. Both Nat Geo and Nat Geo Traveler are represented in audio format. Good people the National Geographic Society.

If you are able to get BARD and like magazines, check out the listing. There are several dozen there. They are not necessarily right up to date but pretty close. I found February, 2017 and this is mid-March.

BARD has Playboy in audio. Apparently there are guys out there who really do get the magazine for the articles. ?

Better yet, they also have Playboy in BRAILLE! I do not want to know what that is all about! My imagination is running away from me as it is!

If you subscribe to a print magazine and would like online access, check it out and let us know how you make out. There are certainly others that offer free access online. Continue reading “Get Your Magazines”