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….automatic 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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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.

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Wearable Technology for the Visually Impaired

There are many devices and apps that help those with low vision such as handheld magnifiers, apps for smart phones & tablets that magnify what the camera sees, devices & apps that convert text to speech, CCTVs, apps & devices for object identification and more.  There are advantages and disadvantages to these which depend on the needs of the person.

One of the newest advances in technology is the hands free also called head worn devices or wearable technology.  You’ll hear them called: smart glasses,  low vision headsets or goggles.  Some of the technology is referred to as AugmentedReality (AR).

This page will talk about the ones that are currently available: eSight, OrCam, NuEyes and SightPlus. I’ve included IrisVision which will be available soon. There are currently a few smart phone apps for magnification that you can use in a Google Cardboard headset.

Disclaimer:  these are the features and costs as of today (July 5, 2017).  As the technology changes, so will the features & costs so check with the distributors for up-to-date information.


The information in this table is subject to change with changes in functions, available and price.

** photo with table

Availability & where to Get More Information
  • OrCam: http://www.orcam.com/
    • availability: a representative of the company told me “We are available in many countries and expanding all the time – here are the languages we currently have available: English, French, German, Spanish, Italian, Dutch, Hebrew.”
    • extensively used & reviewed by Blind Motherhood blogger: click here
  • eSight: https://www.esighteyewear.com/
    • available in 33 countries; click here for exact ones.
    • headset over eyeglass frame
  • NuEyes:  https://nueyes.com/
    • available Australia, Canada, Denmark, Farce Island, Finland, France, Germany, Iceland, New Zealand, Norway, Scandinavia, Sweden, South Africa, United Kingdom, United States, China
  • Cyber Eyez: http://www.cybertimez.com/
    • mounted on eyeglasses frame (not included)
    • availability: sent msg
  • SightPlus:  http://www.givevision.net/
    • goggles
    • UK only
  • OxSight:  http://smartspecs.co/
    • availability:
    • may be called Smart Eye http://medgizmo.info/news/medgizmo-update-wearable-technology-for-visually-impaired-august-2016
    • http://www.caroncares.co.uk/optical-health/restoring-sight-give-vision/
    • https://www.rnib.org.uk/smart-glasses
  • IrisVision: http://theirisvision.com/
    • goggles
    • not sure when it will be available or where; I’ve requested information
    • http://abc7chicago.com/health/new-iris-vision-technology-aims-to-help-visually-impaired/2114456/
    • https://www.benzinga.com/pressreleases/17/07/p9852046/irisvision-a-new-product-for-the-visually-impaired-available-at-florida
  • Google Cardboard & smart phone apps: https://www.reddit.com/r/Blind/comments/5o5lci/use_your_phone_and_a_google_cardboard_as_a_low/

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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:

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Holy Steve Austin, Batman!

We can rebuild him. We have the technology.

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!”

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