macular degeneration, macular, diagnosis Technology – 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’s Toolkit – 4 Years Later – 2020

Hi! I probably forgot to wish everyone a happy 2020. A belated welcome to the year that has inspired interest in vision issues the world over! [Lin/Linda: I apologize. Sue wrote this at the end of January! I admit that I lost track of it.]

February 12, 2020 will also end my fourth year as an official, legally blind person. Time certainly does fly. [You can read about her journey starting In the Beginning.]

Lin asked me to do another page on the “toys” I use regularly. The truth is I have really pared down the number of toys I use. I will tell you what they are in a moment, but right now I want to theorize why I am using less technology.  [I’ve put links to Sue’s prior pages – 2016 & 2018 – about her ‘toolkit’ at the end.]

My theory is this : I have been adapting. I have realized that more recently. I am now pretty much able to put a plug in an electrical outlet on the first try. I am also much more successful in zipping my own coat. They sound like small things but for a while, in my life, they were huge! I have now fairly mastered those skills and probably many more.

I guess what I am saying is don’t give up on learning how to deal with your vision loss. Human beings are very adaptable creatures. You will be amazed what you can do when you try.

That said: what “toys” do I actually use these days? LED lighting is the first thing I would recommend. You need good lighting to accomplish anything visual. I have Ott lights next to the bed, on my ironing board and in the office. My LED lights are the first things that get turned on in the morning.

I just got a new computer at work. I prefer Mac products but the center where I work has PCs. If you have a PC, you will pretty much need ZoomText. I just purchased a one-year license for the application. You can get a one-year, home-use license for $80. I could not work well or easily on a PC without ZoomText. [ZoomText is a screen reader & magnifier. There’s more about that on their website.]

If you are “Mac by religion” as yours truly describes herself, you don’t need to install anything else. The iMac I have came with magnification capabilities, it is in accessibility in the system menu. I simultaneously hit two keys and then one alone and the screen image expands. iMacs are costly but it is an operating system I “grew up on” and that I prefer. Either PC or iMac, though, I could not work efficiently without magnification.

Bringing me to the “workhorse” of my visually impaired world, my CCTV magnifier. It is on my CCTV that I take notes at work, pay bills, read mail, and do just about anything that requires central vision. The value of my CCTV to me is immense.

And one last thing: my iPad. I love my iPad. Last evening I was watching my TV app on one iPad. I play games on it. I write on it.

I have apps on my iPad that allow me to access my world in other ways as well. It is on my iPad that I have my BARD app. Getting free audio books through BARD is just about the best thing about being visually impaired.

My KNFB Reader does not get used much, but it is on my iPad as well, as is my NaturalReader, a text-to-speech app. Need your emails read? How about a web-based article? As long as it is a pdf file, a text-to-speech app can do the job.

So, those are the winners by attrition in my life. Those are the things that have stood the test of time. I do not expect the things you find useful to be exactly the same, but this might give you some places to start.

And again, welcome to the year of vision, 2020. Ain’t it cool to be trendy?

Written January 26th, 2020; reviewed March 10th, 2023.

Sue’s Toolkit: In the Beginning 2016

Sue’s Toolkit: 2 Years Later 2018

Shopping

My Blindness and Visual Services caseworker stopped in to say “hi”. He remarked a common client had hit a snag in plan A and he was moving him to plan B. Plan B was to be the Carroll Center.

Quite frankly, I had never heard of it. I have only been legally blind for 3 ½ years, guys. I can’t know everything! However, in an attempt to know “everything” I looked it up.

I will give you more on the Carroll Center itself later, but where I jumped into their webpage and where I want to start here is the store. They have CCTVs for rent! Be still my wildly beating heart! The cheaper ones are $25 per month. The more expensive ones are $50.

This is a deal! CCTVs like mine run $3,500. You own it. You repair it. I have had to send it for repairs about three times in three years. Average repair price? Let us say $200. Even renting their most expensive option, the price of one CCTV would cover six years of rental. If it breaks? Send it back and get a new one.

I really like this idea for the budget minded “blind”!

The other thing that caught my interest was a new product the Carroll store is advertising. They are touting this super cool item locator for the price of $26. The system comes with one transmitter and three receivers. You fasten the receivers on to things you are always losing. Keys, my phone and the remote come to mind immediately. The receivers are color-coded and there are three, color-coded buttons on the transmitter. Hit a button and the receiver on an item sounds a tone.

Knowing myself, I think I would want to find a permanent home for my transmitter. Maybe glue it to a table. It is well within the realm of possibilities that I would misplace the transmitter!

Looking at the range of categories of things the Carroll Center has for sale, I would say they pretty much rival Maxi Aids. It is always good to have options.

Now, I will try to pull myself away from shopping and tell you a bit about the Carroll Center. According to their website, the Carroll Center is nearly 90 years old. It started as a Catholic charity but now appears to be non-denominational. Visually impaired? You’re in.

Located in Newton, Massachusetts ( 800-852-3131), the Carroll Center serves all ages and all levels of visual impairment. They advertise services for children all the way up to seniors. For seniors they offer independent living programs such as essential skills, diabetes self-management, orientation and mobility and technology. It appears many of these programs are offered on campus there in Newton. A temporary relocation may be necessary. However, if they are as good as their website suggests, it could be worth it.

Funding? No clue. I know state agencies like BBVS will fund if you have a chance of going back to work. Remember they are part of vocational rehabilitation and their mandate – and most of the budget – is to get people back to work. If you are not a good candidate for employment, funding will have to come from somewhere else.

So, need services? Live in New England? The Carroll Center might be your ticket. And now, if you will excuse me, I am going back to shopping!

Written Sept. 16th, 2019

Next: FIGHT THE GOOD FIGHT

Reading and Writing

We were talking the other day about my reading. It is not great. These days my visual span – how much text I can see essentially at a glance – and my discrimination both contribute to slowing my speed and reducing my comprehension.

As I have said before, I can read a few pages here and there. I just no longer do any recreational reading. Audiobooks all the way for this girl.

I found some information on reading rates at perkinselearning.org. This 2017 article about children’s reading reported research findings that large print readers are 1.5 to 2.0 slower than average readers of comparable age. There is no research available comparing acuity and reading rate but anecdotal evidence suggests, as one would expect, lower acuity leads to slower rates. The article also stated “reading” with compressed speech is slower than “excellent” readers’ speeds. In other words, I cannot read as fast as I could before even with the book doing the reading!

So, how might someone write to help a VIP with her reading speed and comprehension? Lin suggested I might want to write a page on writing for the visually impaired. It sounded like an interesting idea but all I found online for references were about teaching visually impaired children how to write. That is not exactly what we had in mind.

I must admit I don’t always write the sort of stuff I would like to read. I like short and concise when I read. When I write, I get carried away. Dependent and independent clauses. This kind of phrase and that kind of phrase. Interjections!

Oh, well…no one is perfect. I write the way I write but if you find any research suggesting a better way, let me know.

What I did find, though, was a review of writing tools, specifically keyboards. Steven John writing for wiki.ezvia.com in January, 2019 came up with six suggestions for the best keyboards for the visually impaired.

Of the six John suggests, large characters on the keys and/ or ultra bright colors appear to be the two, main, adaptive features. That color, by the way, would be fluorescent yellow.

I was pleased to see the keyboard they rated as number one was the keyboard I have for my office computer. This one is the EZSee Low Vision. I got two of them from my technology person from Blindness and Visual Services. That was three years ago and one is still functional.

Having only one be functional after three years may not sound great to you but my tech guy got them at the “Good Stuff Cheap” place for $4 apiece. Remember as VIPs we make up a small fraction of the population. Stuff we think is a godsend may be looked upon by a store manager as a stupid buy and something to send to the liquidator asap. If you can, be sure to check the merchants who sell overstocks and other assorted “trash” first. There can be gold in them there aisles!

Otherwise, my vision searing, fluorescent yellow keyboard can be purchased for $18 plus tax and shipping through Amazon. It got four out of five stars. [Lin/Linda: if you don’t want to buy a new keyboards, I got stickers that are bright yellow with bold, black letters from Maxiaids.com for $12.95 now but I think I paid less. They regularly run sales so watch for them.]

So, back to the original questions. What is happening with your reading? What type of writing is easiest for you to read? Let’s start the discussion.

Written February 10th, 2019

Next: “AND NOW FOR SOMETHING ENTIRELY DIFFERENT”

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.

Sue on Assignment – Special Topics

When Sue announced that she was going to take a break from writing journal pages, she asked if anyone had any topics that they’d like her to research. It didn’t take long for ME to find several projects for her.  I’ve also gotten requests from readers.  If you have a topic, please post it in the comments or send it to me at light2sight5153@gmail.com. I can’t guarantee that she’ll take them all but we can try!

AREDS2 Study & Geographic Atrophy (2 pages)

Money for Assistive Technology (2 pages)

Non-genetic Causes of Macular Degeneration (2 pages)

Got Milk? Research on Calcified Eye Spots

How to Conduct an Experiment for Yourself

How She Sees What She Sees

Altitude and AMD (2 pages)

Be My Eyes

Coping Fatigue (3 pages; Coping Fatigue, It’s Not Your Fault, and Exhausted by Life?)

Mitochondria – Part 1 (2 pages)

Photobiomodulation

Why Read My Pages? My Answer

Independence

Independence

Getting Food to Come to You

Supplements

Resveratrol: Efficacy Not Yet Proven for AMD

CBD Oil: Safety and Efficacy Not Yet Proven for AMD

Bilberry: Safety & Efficacy of Supplement Form Not Supported by Research for AMD

Astaxanthin: Has Potential But Not Backed by Scientific Evidence for AMD

Linda on Assignment

Me and My Cocoons – 2 pages

Electronic Glasses for Low Vision – SeeBOOST

Headworn Low Vision Glasses and Goggles – 2 pages

 

More to come!

Have an idea for a page for Sue? Let me know at light2sight5153@gmail.com

Sue on Assignment: Money for Assistive Technology – page 1

It has been a little over two years since I started using technology for low vision. I wrote page after page about my “toys” and how they were making my life better. [Lin/Linda here: her last update about what she uses on a daily basis is Sue’s Toolkit – 2 Years Later.]

I remember one reader made a comment along the lines of this: I was wealthy and could afford to buy myself thousands of dollars of equipment. He wanted to know what I thought someone with few resources was supposed to do.

To begin with, I am not wealthy. I am a professional, and we are probably slightly above average for the middle class. Second point, except for replacements (a lot of technology does not bounce when it is dropped. More’s the pity!) and repairs, I have paid nothing for my equipment! That is nada, goose egg, a big, fat zero.

I have said it repeatedly: everything was purchased for me by the Bureau of Blindness and Visual Services. They are a branch of the Office of Vocational Rehabilitation in Pennsylvania. And that can be a problem. I was young enough, loved my job and desperately wanted to go back to work. The agency was willing to pay several – probably more than several, actually – thousand dollars to keep me paying taxes and off of the disability rolls. [Check out Sue’s page Salvation: Vision Rehabilitation Revisited.]

Great for me. Not so great for those of us who are older, retired and have no capability or inclination to go back to work. Our state BBVS will pay, last I heard, about $600 for equipment and services for those people. That will buy maybe 1/6th of a CCTV. Now what?

First of all, I would suggest pursuing help from a state agency anyway. $600 is $600. Second point: I borrowed two CCTVs from our county library while mine was in the shop. The ones I borrowed were shoved in a corner and never used. A library card and a gratitude donation got me out of a fix. You may be able to make a similar deal.

Quite a while ago I ran a page on an assistive technology reseller. Some states have agency-run “swap meets.” Donate what you can no longer use and take what you need. Free. I think the best one I found was Massachusetts.

Sam of the Blind Life reported some of his clients found used technology at yard sales. He also suggested keeping an eye on eBay and in pawn shops. [Check out Sam’s video Why is Assistive Technology So Expensive?]

Other options? Enhanced Vision has a site that lists grant sources for assistive technology all across the country. Not only do they list many of the state-sponsored grants, but they also list several private organizations that will pay for part of the cost of the equipment. I will go to some of these sites and see what I find out.

…hmmmm, just had a thought. Enhanced Vision sells adaptive equipment. Yes? Yes. If you find something they sell that you really want and cannot afford, would they suggest a funding source? Just a thought. Somebody want to try?

Ok. Sue, Girl Detective, on the case. See what I can find…and whatever happened to Nancy Drew, anyway?

Written September 21, 2018

Next: Sue on Assignment: Money for Assistive Technology – page 2

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Sue on Assignment: Money for Assistive Technology – page 2

Hi! As promised I am looking at some of the funding sources suggested by Enhanced Vision.

Here is the disclaimer: we know NOTHING about any of these funding sources. Legit? Dunno. Shady? Dunno. I mention them only because they might – remember might – be helpful to people trying to find ways to fund assistive technology. Nothing is guaranteed and nothing is recommended. Caveat emptor.

Moving along then, the Digital Federal Credit Union offers what they call Access Loans. They are for up to 72 months (that is six years) and you can borrow up to $25,000. The interest rates are between 8 and 10%. There is no down payment required.

Check with your own bank and take a look at their rates. My bank advertised personal loans “as low as 9.5%.” That means the DFCU deal is most likely better than my bank. Make sure to check rates in your area before applying.

The Association of Blind Citizens sponsors the Assistive Technology Fund. Sorry everyone outside of the States but this one is residents only. The ATF (and no, that is not alcohol, firearms, and tobacco) will pay up to 50% of the retail price of assistive devices and software. The price should be between $200 and $6000.

In addition to requiring applicants are legally blind, they also have income and asset guidelines. It does not appear you have to be a member of ABC but I am not sure. Grants are awarded twice a year. These grants, like many, appear to be based on need.

The National Assistive Technological Assistance Partnership is said to have the mandate to maximize the abilities of individuals with disabilities to access and obtain assistive technology devices and services. I went to the website and saw nothing about $$$. Does not mean it is not there. After all, I AM visually impaired.

For our friends in the UK, I stumbled upon the Gardner Trust for the Blind. They are based in London and may provide grants for education, training, and household items. They also mentioned the possibility of pensions. [Lin/Linda: This webpage actually lists several sources of financial help including the Gardner Trust for the Blind, Guide Dogs, MACS, RNIB Grants, Victa, The Vision Charity, and links to a few others.]

….unfortunately I am three or four pages into my search and the ones I have listed above keep repeating. Other than these, the major players are the state organizations and the Lion’s Club. It does not appear there are many private organizations that are willing to help with the purchase of assistive technology.

That does not, however, mean the search is over. Do you have low vision equipment? Where did you get it? Has anyone tried to get low vision assistive technology as “durable medical equipment” from insurance? How about Medicare? What would make low vision technology “medically necessary”? Let’s get creative, people!

Written September 21st, 2018

Next: Have a topic for Sue to research? Post it in the comments or email it to light2sight5153@gmail.com.

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Electronic Glasses for Low Vision: SeeBOOST

What are they?

[Disclaimer at the end of the page.]

Here’s video explaining how it works. Sam of The Blind Life reviewed it.

Quotes below are from personal emails with Russell Lemburg at seeBOOST. “Price is $3,500, available now with a free 14-day trial.  We are now offering seeBOOST anywhere in the U.S. with the help of local optometrists (a low vision specialist is not required). SeeBOOST is made specifically for central vision loss, which is why it is monocular and allows you to retain peripheral vision. It may not work for everyone, but it is the best product for this problem today.”

“We’re a 6-year-old company and now have hundreds of people with AMD using our product. One of the things we’re trying to do is to make actually wearable products for people with central vision loss.”

“When I say actually wearable I mean that this entire industry (as new as it is) is often focused on trying to solve all forms of Low Vision, and as a result you get a fairly large and heavy thing on your head that gives you motion sickness and, especially in case of the more elderly folks, it causes them to develop neck problems.”

For Whom?
“The “sweet spot” is people with BCVA between around 20/100 to 20/400, although we have some customers at 20/600 or worse. In all cases, they have AMD or central vision loss in both eyes (wet or dry). Everyone has certain requirements for what they want to do. In almost all cases, customers who are reading, recognizing faces, card games, computer use, etc. benefit greatly. We do have cases where some want to watch HDTV from 20 feet away or read a sign from 500 feet away. This is not a proper use case for seeBOOST (or any wearable for that matter).  The closer you are to an object, the more spatial resolution there is from camera/lens so the better it works (again, this applies to all electronic wearables). They work best at up to 20 feet.”
“We have noticed that better than 20/100 usually do not work very well, primarily because there is not enough added benefit to really make it worthwhile. Not always, but generally speaking. Every person is different, and vision/psychology/expectation is a rather complex thing we’ve found. That’s why we have a 14-day free trial because the customer is the best judge of what is good for them. When we get a customer right in the sweet spot though it’s exciting for all of us.”
Where Can I Get One?
  • The information below is from Russell:
    • We have a list of Low Vision optometrists that sell our product here:   https://www.seeboost.com/buy.html
    • If someone has a Low Vision doctor that they go to that they want a demonstration with, we can set that up with them also very quickly.
    • We actually have some resellers in other countries (like France, South Africa, etc.) India is a little more tricky, but it’s certainly possible to set up some sort of free trial. Of course, shipping is a little more expensive in that case. For now, we mostly just sell in the U.S.
For more information

Go to their website at https://www.seeboost.com/  or call  972-643-8498.

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Life After Vision Loss

I have been ignoring you. This is my first page in eight days.

I have not been ignoring you on purpose. I have been having what I consider to be a raging case of seasonal allergies (my husband swears I caught a germ) and fighting that. I have also been doing other things such as going to exercise, a benefit supper and work. September we go back to the second half of our “free” training, and I need to have my homework done.

I say this not to garner sympathy or admiration but to make this point: there is life after vision loss. Vision loss does sometimes shrink into the background. Sometimes wondering if you will ever get through a day without hacking up a lung or pondering where the hey the answer to question six is in the handouts really does take precedence.

And with that reassurance – there really is life after vision loss! – I want to move on.

Lin sends me stuff. I know the Facebook group has talked about the topic of blue light to death, but let’s quickly do a review of the article she sent me.

The article is Can Phones Make You Go Blind? In my short time on Earth we have gone from heavy, Bakelite monstrosities with little operators who hated kids living inside of them (I swear. I had a bad experience when I was about three. The little operator in the phone yelled at me to stop playing with the phone and behave myself. It was traumatizing!) to little, pocket-sized things (on which kids play all day. Go figure.) These little, pocket-sized things emit blue light that destroys retinas. The only way the old, black phones of my early childhood could have blinded you was if someone hit you over the head with one. I guess this is progress.

Anyway, it seems blue light will cause the chemical retinal (that is “retin- all” for pronunciation) to morph into something toxic. It all has to do with oxygenation and reactive oxygen species (ROS). ROSs sort of run amok damaging other cells. Ever heard the term free radical? It is all related.

Bottom line is, we need oxygen to be used in the chemical processes of life. Cannot cut that out of the equation. Also, in this technology-crazy world, screens that emit blue light pretty much rule. I will give up my device when you pry it out of my cold, dead hand. Besides, technology makes vision loss tolerable for many of us.

The answer appears to be putting “shades” on all of your devices. Blue light filters come in a variety of sizes. Most of them just mold to your screens. No muss and no fuss.

Amazon has a selection of blue light filters available. A lot of them cost in excess of $40. Potentially a little expensive.

There is another option, however. Amber lenses can do pretty much the same thing. Sunglasses with amber lenses block blue light and can be worn while you look at any screen. One purchase rather than several. Another benefit of wearing amber lenses and blocking blue light is, according to the research, better sleep.

Get shades for your screens or you wear shades yourself. Either way, it is best to avoid that pretty, blue light.


Lin/Linda: As with so many topics in the field, since I gave Sue the article she’s written about, this article was released: No, Blue Light From Your Smartphone Is Not Blinding You. This article is from the American Academy of Ophthalmology (AAO), and it says, “Blue light from electronic screens is not making you blind. A recently released study has been creating both concern in the public and alarmist headlines from news outlets worldwide. But experts are cautioning that the news reports are leaping to unfounded conclusions about the potential effects of blue light on the eye.”

Written August 28th, 2018

Next: coming soon!

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Filling the Pumps

At approximately 15:45 hours yesterday, the body of a dark-colored field mouse was observed at the bottom of the pool. It appeared to be death by misadventure. However, when this technician attempted to remove the body from the scene, she was jumped upon by Etta Puppygirl, of this address. Ms. Puppygirl hit this technician squarely in the back, and she pitched forward into the water. While the evidence at the scene suggested accidental drowning, should other evidence come to light, Ms. Puppygirl should be further investigated.

Jeez. Do other CSIs go through this?

Ok. Enough of the nonsense. Sometimes I just cannot help myself. 🙂

And in the real, official news…Retina Today interviewed Carl Regillo about the ranibizumab port delivery system. It appears the RPDS is placed in the sclera. It is situated in the conjunctiva, the mucus membrane that covers the front of the eye. Where in the conjunctiva? It is placed in the pars plans (literally the “flat part” of the eye.) The pars plana is located near the junction between the sclera and the iris. That is the white part and the colored part. While the reservoir is initially implanted in the operating room, sutures are not required and it can be refilled on an outpatient basis.

Results of phase 2 clinical trial should be out very soon. The name of the study is LADDER.

While the RPDS system is the popular guy on the block now, reading this article, I found out it has competition! Replenish has invented a system called the Ophthalmic MicroPump System. This device sits on top of the sclera – not sure how that would work for me – but it is programmable. That part is cool.

Neurotech Pharmaceuticals has been working on Encapsulated Cell Therapy. This device will contain genetically engineered cells that will actually produce the substances needed to keep things working well. In other words, there would be no reason to refill the device. Put really basically, the other devices are filled with eggs. This device is filled with chickens that produce all the eggs needed.

As of the writing of this article, Neurotech Pharma was having a few problems producing the perfect “chicken.” That does not, however, mean they have given up.

And speaking of weird science and Carl Regillo, Healio reported Regillo will be heading up the only American feasibility study for the Alpha AMS Sub-retinal device.

This device is not for us. It is for retinitis pigmentosa patients who are blind. The Alpha replaces the missing and nonfunctional photoreceptors and apparently interfaces directly with the visual part of the central nervous system.

I found a 2013 article in MIT Technology Review that compares the Alpha to the Argus, the original artificial retina system we discussed. It appears the Alpha requires no external hardware while the Argus uses a camera mounted on glasses. The Argus surgery is three hours while the Alpha surgery can be up to 10 hours. Vision produced by either system is not great, but remember something can be better than nothing.

So that is that. No more drown mice today so I am hypothesizing we do not have a serial killer in the house. I would like a way to know which Puppygirl chewed on the furniture, though. Perhaps I need a consultation! Anyone know a forensic dentist?

Written August 5th, 2018

Next: Coming Out

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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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Headworn Low Vision Glasses and Goggles – Part 2 – Features/Tasks

continued from Part 1

To choose any low vision aid, you should have a list of what you want the device to help you with.   Not everyone can use the devices that use magnification, it depends on a your visual acuity and how much you use your peripheral vision.  If you’ve checked the YouTube reviews in Part 1, you know that Sam’s vision is such that there are only a few of the devices that use magnification that help him.  It is partially dependent on the size of the screen and how much the device blocks one’s peripheral vision.

Reading text
distance from you/
Types of text
Helps you read using magnificationReads text to you
called text-to-speech
or OCT
text is near to you/
books, newspapers, phones, bills, medicine bottles, menus
NuEyes
SeeBOOST
IrisVision
SightPlus
Jordy
CyberEyez
NuEyes Pro-you can also read books, emails, social media posts on the glasses *
OrCam
NuEyes Pro
CyberEyez
text is at an intermediate distance/
computer, labels on shelves at home or in stores
NuEyes
SeeBOOST
IrisVision
SightPlus
Jordy
CyberEyez
OrCam-has an object recognition feature for store products & a money recognition feature
NuEyes Pro
CyberEyez-object identification
text is at a distance/
street signs, aisle signs in stores
NuEyes
IrisVision
SightPlus
Jordy
CyberEyez
OrCam
NuEyes Pro
CyberEyez
* NuEyes Pro has full computer capabilities
I have not included OxSight it isn't yet available to the public

 


Seeing the World Around You
TaskDevice - not all devices work for all people; lots of variables like extent of vision loss & specifics of device
reading & hearing textsee table above
drivingnone, not safe and not legal
seeing faces, recognizing facesAll of them COULD help with this:
Jordy
NuEyes
CyberEyez
eSight
IrisVision
SeeBOOST
SightPlus
OrCam-'learns' faces, speaks name
Cyber Eyez-has an 'emotion' recognition feature
walking quickly, running, jogging, bikingSeeBOOST does not cause 'motion sickness' but not sure how they'd do with these activities
Only devices that do NOT have magnification which is OrCam
writeJordy
NuEyes
CyberEyez
eSight
IrisVision
SightPlus
recognizing products in the store or in your pantry by bar codemagnifies labels: Jordy, NuEyes, SeeBOOST, IrisVision, SightPlus
OrCam-you 'teach' it a product, recognizes & speaks name
CyberEyez-recognizes objects using Google image search
NuEyes Pro: Barcode and QR Scanner
color recognitionOrCam &
CyberEyez
both speak color
money recognitionCyber Eyez &
OrCam both speak answer
watching TV
going to a play, the movies, a concert
watching sports sightseeing
Jordy
SeeBOOST
NuEyes
CyberEyez
eSight
IrisVision
SightPlus
working on hobbies like sewing, knitting, woodworking, painting, drawing, reading & playing music, playing cards and other gamesJordy
SeeBOOST
NuEyes
CyberEyez
eSight
IrisVision
SightPlus
personal care
looking at photographs
cooking and household tasks
personal care
Jordy
SeeBOOST
NuEyes
eSight
CyberEyez
IrisVision
SightPlus
work, school activities and home activities involving 'paperwork'Jordy
SeeBOOST
NuEyes
CyberEyez
IrisVision
eSight
SightPlus
watching TV/movies on the glassesJordy-has HDMI to hook to TV
NuEyes Pro-streams TV/movies
computer capabilities like email, browsing, social media on glassesNuEyes Pro-full Android computer
eSight-plug into computer via HDMI & see screen in glasses
use headset on docking stand & w monitor as CCTVJordy
fully-funded assistive device by US Veteran's AdministrationOrCam
travelingJordy
SeeBOOST
NuEyes
CyberEyez
eSight
IrisVision
SightPlus
OrCam

 

Next: What do they look like, how do you control them

 

Headworn Low Vision Glasses and Goggles – Part 1

There are many devices and apps that help those with low vision such as handheld magnifiers, apps for smartphones & tablets that magnify what the camera sees, devices & apps that convert text to speech, CCTVs (Closed Circuit TVs, not the CCTV for security), apps & devices for object identification and more.  There are advantages and disadvantages to these that depend on the needs of the person.

One of the newest advances in technology is that of the handsfree – also called headworn – devices in the category of wearable technology.  You’ll hear them called: smart glasses,  electronic glasses, low vision headsets or goggles.

As the technology changes, so will the features & costs so check with the manufacturers or distributors for up-to-date information.

Updated: 10/2/2019 [3/21/2018, 1/1/2019]: This information is changing with new entries in the field and new technology. I’ll try to update this as soon as I have time. In the meantime, you can check with each company for the current capabilities and costs.]

General tips for evaluating

None of these are safe to use while driving and in many states and countries are illegal to use.

  • The longer you can try the device, the better, although many people report that they can get an idea of whether it will work or not rather quickly.  The devices that magnify don’t work for everyone, it depends on the specifics of one’s vision.
  • Look for a money back guarantee, find out how long you have to return it (30 days, 60 days), and ask who pays for the return shipping.
  • Find out how much it will cost to get the device shipped to you.  Some of the devices are made in another county & the shipping & insurance costs are high.
  • You’ll want to have a good warranty that covers materials and shipping.
  • Do you get free training? Some companies will send a representative to your home.  What kind of support do they provide such as a toll-free phone number and/or online support.
  • Are their payment plans?
  • If you have a problem with motion sickness, the devices that have video cameras in them (the ones that magnify) are NOT intended to be used while walking and definitely NOT for driving.
  • Find objective reviews not just testimonials on the manufacturer’s website.
  • Consider getting a CCTV instead or at least compare the capabilities of the CCTV vs. the headworn device.  Many people want the headworn devices because they are hands-free but CCTVs are also hands-free for many of its uses.

This table gives you the basic information about the various devices such as price and general features.  I’ve also included links to the manufacturers.   We think it is important to get objective reviews and we’ve found that the best ones are those on YouTube done by Sam, a vlogger (video blogger) who has Stargardt’s Disease and who works for the Bluegrass Council of the Blind.  His YouTube channel is called The Blind Life.  He’s not reviewed the 2 devices in the UK so I’ve provided other video reviews.

As you move your cursor down the table, each row will be highlighted.

Device/
Cost/
Website/
Review
** see notes below
text
to
speech?
Magnify?Object Recognition/
Facial Recognition?
(means audio output)
Orcam:
MyEye 2.0: $4250
MyReader 2.0: $3500
OrCam site
Blind Life (Aug 2020)
yesnoYes
user ‘teaches’ device
Also money &
color recognition
eSight 3: $5950
eSight site
(Blind Life (March 2017)
noyesno
NuEyes: 
Pro: $6195
E2 $5995
Costs US Market only
May be higher elsewhere
NuEyes site
Blind Life (Feb. 2018)
ProyesPro: barcode
IrisVision: $2950
Iris Vision site
Blind Life (Oct 2017)
yesyesno
SightPlus:
£2,995, or can be rented for £495 plus a monthly fee of £55
UK only
SightPlus site
Using SightPlus
noyesno
Jordy:
$2500
also can be used as
CCTV
Jordy site
Blind Life (Feb. 2018)
noyesno
Cyber Eyez Trifecta:
$2,899
Cyber Eyez site
Blind Life (Apr 2017)
yesyesimage, emotion
and color recognition
SeeBOOST:
$3499
SeeBOOST site
Blind Life (Aug 2017)
noyesno
Acesight: $4995.
Acesight site
Blind Life (May 2019)
NoYesNo
Eyedaptic EYE2 cost? added 2020
Eyedaptic site
yes
Oculenz $6,000 - preorder $4,500 - available 4th quarter 2020.
Oculenz site
2019 research - Oculenz augmented reality headset shows benefits for patients with severe AMDMAY eventually be covered by insurance
** Please check prices & availability as they are subject to change
** Reviews done by video blogger Sam of The Blind LifeUpdated 10/2/2019

 


Next: Which device for which task

News Briefs

Dreary Saturday. It is cold and rainy. The chill gets into my very core. I would rather have a foot of snow than this stuff but then no one ever asks me. Also, a lot of people really don’t appreciate my preference for snow! Obviously not skiers.

All afternoon I have been curled up on the couch with my iPad. Decadent. Really don’t like to do this but I wanted to finish a BARD book I had started and I was working on level 1005 on Panda Pop. Make that STILL working on level 1005. Not going so well.

Anyway, I do need to mend my wanton ways…later.

My email is full of news briefs from eye sites. ? There is a ton of information out there. One article healio.com sent me was Specific gene variants play role in response to Anti-VEGF treatment. Once more it appears our genes are our destiny, at least for now.

We all know medicine is headed towards ‘personalization’. There is evidence for a vitamin supplement/genotype interaction and now it appears there may be an interaction between your ‘eye shots’ and your genotype. A study in Spain grouped together good responders and poor responders to ranibizumab (Lucentis). Then they did genetic testing on the two groups. Guess what. Genetically these two groups were significantly different. The genes that responded well were thought to be CFB, VEGFA and VEGFR1. Poor respondents had certain variants of SERPINF1 and CFH.

Among the non-genetic markers? Smoking and high blood pressure were both associated with poor outcomes.

In coming years it should be interesting to see what is going to happen between genetic testing and privacy rights. Also with genetic testing and attempts to withhold services. Will you have to pay more for insurance if you have ‘bad’ genes? Thinking I may be glad if I miss THAT aspect of our brave new world.

Healio.com also reported the Argus II was recently implanted in the eye of a man with retinitis pigmentosa in Singapore. Remember RP people are generally ‘big B’ blind. This thing is not for us who have comparatively good vision.

And for our friends with RP here in the States, Medicare will now pay for the Argus II in 28 states, two territories and DC. Recognition of such innovations as ‘medically necessary’ is paving the way for other innovations that will be coming. Read, accepting the Argus II for RP patients will ‘soften up’ policy makers so they are more likely to pay for things we as AMD patients will be able to use. I find that a lovely thought. (So I am manipulative, conniving and self-centered. Wanna make something of it?)

Pretty much it for now. I have not done much today and I am feeling like a bit of a waste of space. Need to accomplish something. Maybe just one more shot at that level in Panda Pop? ?

Written February 24th, 2018 Continue reading “News Briefs”

I Am Bored

Saturday evening. I am bored. I do not want to do a cursed thing that is available to me. Games? No. TV? No. Cleaning? Bite your tongue!

I guess that means I write. I have no clue what I am going to write about. We will be surprised (shocked, appalled, bored to tears) together.

A very long time ago I wrote how it is possible to get newspapers and magazines read to you over the phone. It is called the NFB (National Federation of the Blind) Newsline. If you qualify for BARD, you will qualify for Newsline.

Anyway, according to a recent email, Newsline is expanding their offerings. You can now have the computer voice read you Ebony, Science Daily, Scientific America online and Hollywood Reporter. Definitely a varied group of new offerings.

Assuming Lin has already put the link in but if not, search Newsline in the archives. Info for signing up is in the old page.

Looking at more of my mail, specifically things from Healio, I see we are getting closer to being cyborgs. They have approved human testing on the Orion Cortical Implant. In fact the first patient received the device last month (massdevice.com article). The implant in the brain is supposed to pick up signals from a miniature TV camera mounted on glasses. The feed is wireless. Gets my sick little brain wondering what else it could possibly pick up. It might be a bit distressing to pick up random signals. Hmmmmm….

That is not for us, though. The invention that may turn us AMD folks into cyborgs is called The Prima implant. I also mentioned this some time ago. Now they have gotten approval to do feasibility studies on people who have vision loss from dry AMD.

The Prima sends signals from a glasses camera to an implant that is connected to the optic nerve. It has 378 electrodes. That sounds like a lot but I have the feeling the vision they will have with that will be pretty pixely. Oh well, it is a start.

You folks who use aflibercept (Eylea) to hold your wet AMD in check may want to check out that manufacturer as a possible investment opportunity. Regeneron posted nearly $1.5 billion income for 2017. Whoa, baby! That is a lot of eye shots.

Another one of my pet ideas again: keep in mind we have power. Why? Because we are the ones who are making it possible for companies to make money like that.

And another thing, Healio reported Regeneron posted a QUARTERLY costs of research and development at…ready?…$528 million. For the year, it was over $2 billion.

This is one company, people! Imagine how much money all of the companies in the world are throwing at finding solutions to our problems. How can you say nothing is being done? How can you say it is hopeless? There is no way they would be spending money like that on a lost cause. Bad economics, don’t ya know?

It is now 10 pm and I can go to bed. Don’t have to worry about entertaining myself any longer. Thanks for helping me get ‘unbored’! Night!☺

Written February 11th, 2018 Continue reading “I Am Bored”

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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Sue’s Musings: Then and Now – Part 5 – 2/1/2018

If you are looking for the page Sue’s Toolkit – 2 Years Later, click here.  I’ll be republishing this page in a few days.

 

I’ve changed the direction of this series to share the pages Sue wrote about the apps and technology that she uses or has tried.  This is just the first page, more to come.


Sue’s Toolkit

Two of the most popular of Sue’s pages are about what apps and devices she uses at work and at home to keep up with her busy schedule:

When Sue’s vision declined in early 2016 & temporarily prevented her from being able to work, she contacted Pennsylvania’s Office of Vocational Rehabilitation’s (OVR) Bureau of Blindness and Visual Services (BBVS).  They helped her financially & with advice from Vision Rehabilitation Therapists (VRTs), she put together a ‘toolkit’.

Next in this series: Sue’s page about which of the apps and devices she’s still using 2 years later.

Technology she’s written about

Managing medications

There are apps that allow you to create audio labels for your medications & some pharmacies will print audio labels for you–>Managing Medications

Audio ATMs

Some ATMs allow you to plug in earphones so you can hear instructions–>Talking to Your ATM

Navigating inside and outside

BlindSquare App – Aug. 2nd, 2017

App & device to monitor your eyes

ForeSeeHome device and MyVisionTrack app – by prescription to monitor your eyes–>Keep an Eye on Your Eyes

Implants below the retina – Bionic Eyes

The Argus 2 and Prima implants for severe vision loss–>Before I Go

compiled 1/28/2018

Continue reading “Sue’s Musings: Then and Now – Part 5 – 2/1/2018”

Underwhelmed

It appears the only time I get to write anymore is when I am waiting for my ride. I may have to leave this and dash out the door at any second. Or dash upstairs and grab a new pair of pantyhose. Whatever possessed me to put on stockings with two ankle biters (literally! ) in the house is beyond me.

Speaking of my puppygirls, I cannot believe they are zeroing in on four months of age and 30 pounds each! They are totally, TOTALLY! a formidable demolition crew. They are now tall enough to reach the tops of tables and nothing is safe.

Finding a matching pair of gloves or slippers is also a challenge. Yesterday I had on one slipper sock and a slipper! Who cares if they matched? We are all friends here!

I have been aware I need to write the final page on Seeing AI. I have been using the scene option on and off with mixed results. Etta Puppygirl was NOT pleased to be called a cat! Basic scenes such as a Christmas tree at the Y are dealt with a little more efficiently. The Christmas tree was identified correctly. However, a rack of little girls’ gymnastic leotards was identified as papers on a shelf.

It appears they have backed off from attempts at being exact in their descriptions. When I tried taking a photo of a coffee maker I was told it was something indoors. I also got some responses that suggested the machine was not sure what it was. I find it refreshing when a machine admits its shortcomings!

I guess my final word on all that is something along the lines of “Great progress but still a ways to go.” I am a ridiculously hard critic, I am aware, but I would not depend on the app at the level of accuracy I have gotten from it. Maybe if I were blind and getting 50% accuracy I would be thrilled. With the vision I have, I am sort of underwhelmed.

On to the person recognition feature. I admit, I tried it one time. I recently cannot get my act together. Work, pups, researching retirement, etc, and it is bedtime. The one time I did try it, the thing thrilled my 54-year old gym buddy. It estimated she was 33! It also said she was happy. My buddy has a great smile.

Not much of a review, I admit. Anyone else want to take on the assignment? I am a very harsh critic and some of you may be more pleased than I have been.

I still see scenes and I use other clues to recognize people. Remember to use setting, body type, posture and walk not to mention voice to identify people. In two years I have succeeded in training one – that was 1 – person to tell me his name when he starts to speak to me. In other words, don’t hold out hope most people are trainable! Another option is to buy a monocular and check out faces that way.

That is it for now. Gotta roll!

Written January 12, 2018


Next: Let Us Try

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Battle of the Apps: Part 3

Waiting for exercise class after a very busy day. You would think things would calm down but they haven’t! I got lunch at 3:45.

Back to Seeing AI while I have the chance. I tried the currency reader next. Right now all I have is U.S. and Canadian. I cashed in all of my Euros when we traveled the last time.

Seeing AI identified $1, $5, $10 and $20 from both sides of the bill with no problems. ( I don’t often have $50s or $100s. Sorry!) That is no problems as long as the bills were fairly flat. Crinkles were not read well. Sort of like a money reader in a vending machine.

The Canadian bills I have are probably twenty years old. They did not read at all. It would appear the currency reader only works with more recent issue bills. Anyone in Canada want to check it out?

Same request for pound notes and euros as well as any other currency the system is said to support. I am curious how it might do.

The barcode reader gave me the same problems as the currency reader. Just like the barcode readers at the store. Basically folds and crinkles stopped it cold. Flat, clean barcodes were read beautifully.

The other barcode reader I have is Digit Eyes. Digit Eyes does have more features than the barcode reader on Seeing AI. For example, there is an option for product information such as ingredients and nutritional value. You can also make a shopping list from what you are scanning. Digit Eyes appears to be more oriented towards the whole shopping experience.

It would be cool if it would send you to a website selling the scanned product so you could reorder but I did not see anything like that. Software designs? You can have that idea for free! Go at it!

Remember Digit Eyes also has a feature that allows you to make and read audio labels for things that do not come with a barcode. So, for example, if you made too many cookies and need to freeze some, an audio label and Digit Eyes can later help you distinguish the molasses from the peanut butter. No actual reading needed.

Next up is the Seeing AI handwriting reading option. I took a photo of some conference notes. It was my printing, which is highly legible according to most people. The notes read:

(page) 4 visual images on the brain
Mirror neurons
Memory consolidation- memory brought from various parts of the brain. Recall is reconstruction. “Process of Light” – book
Mix new neurochemicals with it to create memories, etc.

Yes, I agree my notes are not exactly English. The Seeing AI version was not exactly English either. I apparently centered it badly because only the left half was scanned. There were lots of half words. The read text was gibberish. The visual image created from my printing was not bad.

Maybe a better centering option? If I cannot center it easily with the functional vision I have, someone with a more serious disability could have more problems.

It is nice to see this technology, even in its nascent form, getting into the hands of needy consumers for exactly the right price. Free. It appears Microsoft is intent on bringing these apps, in regularly improved forms, to those in need. Kudos.

Written December 29th, 2017 Continue reading “Battle of the Apps: Part 3”

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”

Before I Go

Waiting a bit before I bathe and get clean clothes on to start the trip. Hate to start out in half dirty duds. Not to mention a half dirty me!

Just got another phishing email. Jeez. I never even knew I had an account in that bank! And to top it off, their noun/verb agreement was wrong. Grammar and usage as fraud detection. One more reason to pay attention in language arts.

Moving on…

Living Well With Low Vision had a recent post on subretinal implants for dry AMD. We are back to Steve Austin again. Remember the Bionic Man? “We can rebuild him? We have the technology?” Yep. Now we are featuring the Bionic Senior Citizen.

We have talked about the Argus 2. That doesn’t appear as if it is ‘for us’ just yet because the quality of the image is poor. Sort of falls under the heading “something is better than nothing”. If you got nothing, it is great. Those of us who visually “got something” might be best to wait some on that.

The new one is called PRIMA by Pixium Vision and it is being developed by the French. Now we are talking early days on this. Just coming out of animal trials so don’t get too excited just yet.

PRIMA is a tiny, wireless subretinal implant that could speed prosthetic vision up to the speed of video. The French team, according to Pixium Vision CEO Khalid Ishaque, built on a concept that initially came from a team at Stanford. Real cross cultural and multinational initiative. Probably a political statement there but I won’t get into that.

PRIMA goes into phase 1 trials sometime in the next couple of months in France. They are starting with five patients with advanced geographic atrophy.

Concurrently, Pixium Vision is petitioning the FDA to try to get U.S. feasibility studies up and running. That could take a while but it is in the works. U.K.? Sorry guys. No clue. Anyone know the reciprocity laws between France and Great Britain when it comes to medical technology and research?

Adding one more, short article review here. They are also experimenting with using lasers to ‘zap’ floaters. The laser they are using is the YAG laser. Neodymium-doped yttrium aluminum garnet is a crystal. Just in case you wanted to know. No? OK. I won’t go into that.

While this type of laser has had multiple uses in ophthalmology up to this point, they are just beginning to use it to play Asteroid Blaster with floaters. Comments published in the Medscape article suggest great care be taken in using YAG lasers for this purpose. More and better organized clinical trials are needed.

That is pretty much it for now. I will be ‘WiFi enabled’ for two more days. After that, I will be shipboard. Online time is obscenely expensive at sea so I will actually have to shut up for awhile. Do you think I can stand it?  [Lin/Linda: anyone want to bet on this? ::grin::]

Written October 29th, 2017 Continue reading “Before I Go”