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”

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Diffy Cults

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

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

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

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

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

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

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

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

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

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

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

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Doing Beers with Grandma

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Time to Watch Some TV

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Managing Medications

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

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

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

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

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

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

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

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

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

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

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

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

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

Written August 11th, 2017

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Keep an Eye on Your Eyes

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

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

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

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

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

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

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

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

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

Written August 9th, 2017

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BlindSquare App

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

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

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

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

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

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

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

Those who have the pay BlindSquare, please chime in!

written August 2nd, 2017

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