macular degeneration, macular, diagnosis BARD – My Macular Degeneration Journey/Journal

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 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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Let the Horse Out of Her Harness

I have been very bad recently. I have not been taking care of business like I should. I have been listening to several audio books on BARD as one distraction.

Even though I cannot actually read the books I like to go to the bookstore to browse. I saw the latest J.D. Robb, Echoes in Death, and – praise be! – it was available for free from BARD!

I would like to ‘read’ the new Lisbeth Salander novel (The Girl Who Took an Eye for an Eye), but it is not available yet in BARD. Watch and wait. Anticipate a good read. The new guy is not exactly Stieg Larssen but he is none too shabby either. I am a Lisbeth fan.

Do you have favorite authors? They are probably available on BARD. If I am just browsing, the BARD offerings are overwhelming for me. I have found browsing the bookstore and looking later for titles that interest me is more productive.

I also sometimes check the new offering and download something out of the ordinary for me but that still sparks interest. Mix it up. Keep it fresh.

We took my photos to the competition site this week. Now I get to wait and see how I fare.

I like to go to the photo show and listen to people spout off about my work. This is especially true if I place. Someone always manages to say he could have taken that photo if he had been able to go on that vacation.

When I talked about that to a friend, she laughed and wondered out loud what these people would think if they knew the photographer was ‘half blind’.

I am not sure I would want that particular piece of information to change their attitudes. I am not sure I would want concessions just because I have a vision loss. Let them be snarky about my work. Let them criticize me like they do everyone else. I chose to be in the fray with all the ‘normal’ people. Snarky, sour grapes comments just come with the territory.

Of course, if they knew, I might get a double whammy. I might get criticized not only for going cool places, but also for ‘courting’ the sympathy vote. Damned if you do ….

Up all night (literally) that same night caring for the dog and asleep from 6 pm until the morning the next night. Just trying to recover.

All nighters at 64 do not have the same effect as all nighters when you are 24. God, how did we do it?

Not that they were derelictions of duty. In my opinion, caring for others as well as for yourself are some of the highest callings.

So those things – plus dance exercise and yoga classes – are the reasons my reports have not been done and my pages have not gotten written. Let things get lax but then tighten back up. Today I wrote one report and about half of another. Tomorrow I go to my hospital’s first vision seminar and take lots of notes for pages. Sometimes you just have to let the horse out of her harness. Sometimes you have to put her back in.

Written September 22nd, 2017 Continue reading “Let the Horse Out of Her Harness”

Around the World of Books

Once again trying to be a ‘good’ or at least productive person and I am not getting very far. Only working part time this summer I have become rather unmotivated!

I finished listening to Rick Riordan’s The Dark Prophecy. That was through BARD. Just a note here confirming BARD has books for kids (real kids and kids in old lady bodies, like me!).

Not only do they have ‘chapter books’, they also offer picture books. I just downloaded Goodnight Moon, all two minutes of it. If you can no longer read to the grandchildren, BARD can come to your rescue. You just turn the pages and provide the hugs.

I also looked at Gutenberg.org a little more closely. They have thousands of titles, all in the public domain. That means the great majority of titles is over 100 years old. If you like the classics, they are available on Gutenberg.org and can be read on your NaturalReader. [To refresh your memory about NaturalReader, go to Sue’s pages Jabbering and Whoopsie.]

Oh, and they are looking for proof readers, too. A page a day would be acceptable. Apparently there was a 20 year moratorium on the ending of copyrights and it expires this winter. Gutenberg.org expects to be inundated by proof-reading work.

If you can edit and manage to read a page or two a day, you can help get the classics from early 20th century into the hands of people who may not be able to afford books.

That is in the States….

Looking for more sources of audiobooks, it appears Bookshare would be available to our international readers, all around the globe. Bookshare requires a statement by a ‘competent authority’ that you cannot access regular text. That could be a family doctor for you without access to vision professionals. Low and middle-income country citizens – countries like India, Egypt and Guatemala – pay $5 sign up fee and $10 annual membership fee for up to 200 books a month. Jeez, and I used to think I was a voracious reader!

Now, this being an American company, most of the books are in English. If you only understand Basque, you are limited to 110 titles. Could be worse. The Bulgarian speakers get 10. Germans hit the jackpot with 4,590. It would appear you should check their holdings before paying your money. Marathi speakers get 120 options. What IS Marathi, anyway?

Just browsing here it appears the Royal National Institute for the Blind (RNIB) has something similar to BARD in their Talking Book program. You must be a U.K. resident with a disability that does not allow you to read standard print. Not sure who makes that determination but the audiobooks look as if they are free.

And they give a tutorial on canes on their site! Nothing like a little ‘trivia’ lesson. White canes are guide canes for only visually impaired. Red and white canes are for the deaf/ blind. A long cane is used to help avoid obstacles and a symbol cane is to let people know you have sight loss and really did not run into them on purpose!

Ok. Now many of us know a little more than we knew 10 minutes ago. Anything else for the good of the order? Bye!

written July 23rd, 2017

Continue reading “Around the World of Books”

Whoopsie!

Whoopsie. Errata alert. I discovered the NaturalReader does NOT support Kindle like I thought [see previous page Jabbering]. This is because Kindle books are DRM (Digital Rights Management) books. Also iBooks, Nook and Adobe Overdrive. DRM is related to copyright laws. There are ways to get around the software ‘locks’ and you can easily find these offered on the web. However, they are illegal and we try not to encourage criminal behavior. Rumor has it scofflaws use something called Calibre. And that is what I know about that subject. ? [Lin/Linda here: I had to look up ‘scofflaws’ in the last sentence.  It is “a person who flouts the law, especially by failing to comply with a law that is difficult to enforce effectively.”]

I looked at Gutenberg.org and found titles like “The Paper Currency of England Dispassionately Considered”. Whoa.

Numismatists study coins AND paper money (thought it was just coins). Hopefully they would be enticed by that title. Me? Not so much.

So far on a cyber search of non-DRM ebook sources I find nuthin’. So for right now for ebooks on NaturalReader I guess it is Gutenberg.org or nothing. Remember if you are legally blind like moi, you can get BARD. I am just finishing listening to John Sandford’s Golden Prey. Love Lucas Davenport. Also, ebooks will zoom on a tablet so those with less of a vision loss can go that route. Sorry I fed you bum info.

And in other news, I passed the 100 mile mark on my bike today! This summer I have been using it for transportation. I realize for many of you your cycling days may be behind you; however, for those of you who can still ride and live in an area conducive to bike travel, it can be an option. Traveling at 7 miles an hour it is easier not to run into things than when you are traveling at 70 mph.

Of course, I almost had my first accident today. I was riding in the street parallel to some guy on a Jazzy (electric wheelchair) on the sidewalk. He decided he wanted to go across the street, swerved right and nearly took me out!

Maybe I should get a bell for my bike…or one of those horns with the red bulb. Anyway, glad I was able to avoid him. How do you explain being taken out by a Jazzy? It would be humiliating.

And because I am again prattling about things totally unrelated and of no great importance – and because I need about 150 more words! – I wanted to ask if you folks knew we are creating great investment opportunities? OK, maybe not us personally but I found a BusinessWire report on Global Age-Related Macular Degeneration Partnering Deals. They are hyping advice about buying into research and development of AMD treatments! They think people can make buckets of money off of us!

Now, some people may think it is rather opportunistic of these potential investors, but I think it’s great. The only way they can make said buckets of money is to invest in treatment we will buy. That generally means something that will work. If research is stirring up enough interest for people to be buying AMD specific investment advice, things have to be happening!

And that is the end of this page? Continue reading “Whoopsie!”

Not Your Parents’ AMD

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Continue reading “Not Your Parents’ AMD”

Time On My Hands

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Written May 29th, 2017

Continue reading “Time On My Hands”

Yesterday’s News

Good morning! Lin just shared a video clip from something that looked like a local TV, health program. The clip was on geographic atrophy. That is GA to those in the know.

I have no problem with information being shared with the public. In fact, I think it is a good thing. The more exposure we get and the more noise we make I am hoping two things will happen. One would be law makers (read the deep pockets of government) will be more aware and sympathetic to our plight. (They might also come to realize it is going to cost BIG bucks to care for us!) The other will be people who have AMD will become more knowledgeable and go for help and support.

There are some drawbacks to these little TV presentations, though. For one, they are a bit behind the curve when it comes to breaking new news. The show talked about a fantastic, recent development that would help people with GA.

Fantastic? OK. Helpful? Yep. Recent? Only if you consider research published in 2013 to be recent.   So shoot me. I am an information snob. That information was just too yesterday’s news for me.

I also think they present half information. If you listen to the clip you will hear the expert talk about a ‘subset’ of patients who cannot be helped with current treatments. Not to put too fine a point on this – and look out because I can feel myself getting ready to rant! – but, honey, the group that can be helped with current treatments is the subset! 15% of AMD patients ‘go wet’. The 85% of us who are left are not the subset! (Told you I was going to rant!)

In the clip there is the implication that replacing RPEs will restore sight. We have talked about this a dozen times before. In GA the photoreceptors are dead. There is no sight without photoreceptors. The RPEs are support cells for the photoreceptors. They do not do any of the ‘seeing’.

But my big complaint about this clip? The expert says your world ‘ends’ when you develop GA!!! (Now I am really revving up. Head for the storm cellar!)

With every significant loss, there is a time of dismay and distress. That does not mean the end of your world! Everyone of us here is made of tougher stuff than you could ever have believed. Maybe you have never been tested before, but the steel is there.

Today I taught my class. I attended a staff meeting and saw two clients. Then I came home, walked the dog and made a meal. I am now writing this page. After that I have a psych report to write. Then maybe some down time ‘reading’ a BARD book.

Tomorrow I work, walk with a friend and go to my yoga class. I am making plans to go into New York City with a co-worker next month. The list goes on.

In short, if my world ended a year and a half ago, nobody bothered to tell me about it! I am still going pretty much full tilt!

So, bottom line? I guess it would be listen to the stuff in the media but remember it might not be accurate or current. Once again, caveat emptor. Best sources still remain published research. If you cannot read it or cannot understand it, ask Lin or me to look at it and we can tell you we don’t understand it either!

And about that end of the world business? Don’t believe everything you hear! GA is not a walk in the park. However, if you want to, you can still do that and dozens of other things as well.

Continue reading “Yesterday’s News”

Get Your Magazines

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

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

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

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

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

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

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

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

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

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

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

In a Pig’s Eye

About three hours later and the ‘tapering’ snowstorm is not tapering. Anyone ever read ‘Ghost Story’ by Peter Straub? It scared my socks off on a summer day. On a day like today I would probably be quivering under the covers! [Lin/Linda: this was written in March of 2017.  In ‘real time’ it’s July 2017 when many of us in the US are having record high temperatures. Thinking of snow is ‘refreshing’!]

In ‘Ghost Story’ it starts to snow. They cannot keep the roads open and it snows. The electricity goes out and it snows. The phones go out and it snows. Eventually some smart soul figures out there is a malevolent force at work in this small, New York town. Yipes!

‘Ghost Story’ is on page 3 of the Gs in BARD. It is available as an audiobook on Amazon for $17.95. If you are still able to read print, you can get it used for about ⅕ of that price.

Another way to scare your socks off? ‘Turn of the Screw’ by Henry James. This one is a classic and free on Kindle. It is on page 15 of the Ts in BARD.

I will vouch for them both as excellent reads. Anyone else have any recommendations they would like to share? Just because we cannot see so well, doesn’t mean we cannot enjoy a good book. Since we like to think of our group as a cut above, try to avoid recommending trashy novels.  Although for a whole series of semi-trashy novels I would recommend the ‘….in Death’ series by J.D. Robb, also available on BARD.? [Lin/Linda: one of my favorites, too, but I don’t think I’d call it ‘trashy’ but definitely R-rated.   Click here for the list in order of publication date.  They’re available at amazon.com, too.  Click here for the first one ‘Naked In Death’.]

Anyway, that was NOT the way I was going to start this page. Not the topic either. I just looked outside and found it all a bit surreal. We are approaching an accumulation of two feet. Not much for some other places but impressive for Pennsylvania.

What I was going to do was tell you about “in a pig’s eye” and how the phrase now has a new meaning. For our international friends, “in a pig’s eye” is an old American expression that implies disbelief. It is the antiquated version of “No way!”

Now, they are finding a way to study drusen in a pig’s eye. Well, actually in a culture medium in which they have placed retinal ‘pig’-ment epithelium cells. (Alright, so it was corny, but I couldn’t resist.) They have found out that pig RPEs are similar in many ways to human RPEs. They have discovered the RPEs in early AMD are actually still functioning and the Bruch’s membrane may have more of a part in the process than previously believed.

This should just be the first of many good discoveries to come out of the pig’s eye experiments. Because they are now able to do a lot of manipulations of pig RPEs being grown in cultures, research can go faster. A lot faster than it would go trying to get people to have all these manipulations done on THEIR eyes.

So there is ever increasing hope here. When you tell people there is a bright future for AMD folks and they say “in a pig’s eye!”, your response can now be “Exactly!”

Keep on keeping on. There is hope.

Now could somebody stop this snow? Enough is enough already! Continue reading “In a Pig’s Eye”

Can An Old Dog Learn Braille?

A reader made a suggestion I could learn Braille. At first it sounded sort of fanciful. I am 63 years old and she wants this old dog to learn new tricks! I am sure it is REALLY hard. I am sure it will take me FOREVER.

Then I thought I should practice what I preach. Turn the mind and be willing. I could at least look into it….besides, it is good for a page and I am running out of ideas. Anyone else out there willing to share? I could use a little more, wonderful help like we got from Lara, Jennifer, Rick and Andrea.

VisionAware has a page on All About Braille. They tell us Louis Braille invented the system in France in the mid-1800s. Braille ‘cells’ are made up of two columns of three rows. Each letter and symbols is made up of a pattern of one or more dots.

The letter ‘s’ is dots in the second column-first row, 1-2 and 1-3. U is 1-1, 1-3 and 2-3. E is 1-1 and 2-1. There! I spelled my name!

I probably would want to learn alphabetic Braille first. That is letter by letter Braille. There is also a form called condensed Braille in which whole words are represented by one cell of dots.

Being part of the special education system, I know a little bit about sign language for the deaf. American Sign Language is not just standard English you ‘speak’ with your hands. It is its own language with its own rules and specialized characteristics. Condensed Braille reminded me of that. It is also just one of a number of systems, just like ASL.

Problems with learning Braille as an older adult include finger sensitivity. Some people are blind because of complications of diabetes. Diabetic nerve damage may interfere with learning Braille.

Right now, I really don’t see Braille as an option for me. Not totally because it would be difficult and time consuming to learn, although those are factors. The major reason is right now I have options that work for me just fine.

I have magnification through my CCTV, reader and iPad, as well as ZoomText on my work PC’s. My computers and my phone also have options that allow me to be read to. I don’t use those options simply because they are so dang irritating! However, if I get to the point I cannot navigate around my desktop or my phone, I may be happy to have them.   [You can review how Sue uses these by going to her pages A Day in the Life and A Day in the Life: Work Day.]

And speaking of being read to, don’t forget my KNFB Reader. Then there are BARD books and the newspapers on my phone.

If I want to write as opposed to read, I do have a few touch typing skills. Speech-to-text is also available to me. Of course, we all know some of the things that happen there.

For example: I tried to speech to text the text “we find our adventures where we can” and the message my friend got was “we find our dentures where we can.” Took a while for her to stop giggling.

OK. Gotta go. I have a staff party tonight and I still have no idea what I am going to wear. Could be worse. At least I don’t have to find my teeth!

Click here for an article on how Braille is useful on the job in case Sue changes her mind. ::smile::

Continue reading “Can An Old Dog Learn Braille?”

All the News You Can Use

Being visually impaired is no walk in the park. However, things are getting progressively better. There is now a way to get your daily newspaper in a format you can easily access.

BARD books and magazines are great but not all that current. However, the Library for the Blind and Physically Handicapped, the people who give us BARD, has teamed up with the National Federation of the Blind to bring you your daily news. Same day, current news.  It’s called NFB-NEWSLINE.

I just filled out the application form.

The page will pinch and zoom. (Have you noticed the number of sites “for the visually impaired” that don’t even do THAT much?)

The whole process took about five minutes. They require proof of vision status. I put down my standing, hopefully in good standing, with BVS and BARD. There is an “other” box so I imagine you could list your retinologist.

Supposedly – this is technology, remember – you can call from any touch tone phone in the United States. All you need for the first time you call from that line is your registration number. After the first time the system will remember you.

There is a 10-selection, branching menu. You can even pull up sale circulars and TV listings! Of course, with a branching menu, it is possible for someone like me to get hopelessly lost, but they do provide an overview of what is what on the webpage.

I checked the list of available publications and it is extensive. Several local communities have their papers available. The newspaper for my old hometown is available. The local rag for this town is not. Oh, well. We won’t discuss how often I look at a local paper.

Apparently, newspapers must express interest and sign up for the program. However, it looks like people are able to tell NFB which papers they want to read and NFB will contact that paper.

There was also something about funding. However, there was no mention of any direct cost to the actual consumers. That would be us.

So that is pretty much it. Use your phone to ‘read’ the daily news once again. Cool. Continue reading “All the News You Can Use”

A Day in the Life

  1. Hello. Lin told me she has a number of new people in the Facebook group and that many of them may not be aware of the variety of assistive devices available to those of us with vision loss. Lin suggested I review the things I have and use in a typical day. I will do this here. Some things to keep in mind:
  • Please read with the understanding this is a cursory review only. More information is available in past pages. I will remind you how to search our website at the end of the page.
  • Also, I’m not specifically recommending anything since choosing these devices is a very personal thing based on the status of your eyes and what you want/need to do with the vision that you have.   What I use was selected for me by the counselors with Pennsylvania’s Office of Vocational Rehabilitation (OVR) Bureau of Blindness and  Visual Services (BBVS or BVS) so that I could continue to work.
  • We don’t get any money or services for what we include in my pages.

Here goes…. A Day in the Life

Disclaimer: I am not recommending any particular service or project, just reporting on what works for me.

One option for a low zinc AREDS2 supplement.
One option for AREDS2 supplement

Today is Sunday so I can afford to be a tad lazy. When I get up I take my medication including my low zinc AREDS2 formula vitamins. There is not much help from taking these supplements in the advanced stages but the minor disease slowing they found at other stages is better than nothing if they do occur.

one source of low vision aids

Being the dutiful granddaughter of Welshmen, I have toast and tea (with milk, of course!) for breakfast. Simple preparations do not require great accommodations. However, if I were ‘Becky Home Ecky’, I would own all sorts of nifty, kitchen gadgets from the MaxiAids catalog.

iPad Mini
iPad Mini

Since it is Sunday, I grab my iPad Mini and plop down on the couch. My iPad has been my salvation. I can check my email by using the pinch and zoom feature. I also have larger text turned on. If you go to settings – general – accessibility you can find a dozen other things that may be helpful.

 

Apple App Store
Apple App Store

My Vision Rehabilitation Therapist (VRT)  Blindness and Visual Services literally stuffed my iPad with apps. The ones I actually use are Magnify and Freeze and a large button calculator. It is also sort of fun to demonstrate the wonders of technology to people using the KNFB Reader. There are about a dozen others on there. Some of them are for people with much worse vision than mine at present. Hope for the best and prepare for the worst; you know.  Today I have been carrying my iPad around while I do chores. I am listening to an Agatha Christie novel on my BARD app. Hercule Poirot is such a clever, little man.

ipadtotv
iPad screen bottom left of photo, enlarged onto TV

 

I can plug my iPad into the TV so that I can see everything on its screen.  I don’t use it much since I can use the Zoom feature on the iPad. Click here to find out how I connected them.

 

 

Magnilink Zip 17 portable CCTV
Magnilink Zip 17 portable CCTV

Since I start teaching again on Wednesday I have my portable CCTV setup which is the MagniLink Zip 17 (photo on left). That way I can review my notes and actually be able to see them! If the CCTV breaks (bite my tongue!) I can always fall back on the iPad with Justand V2 (photo on the right).

 

Ott flip light
Ott flip light

I’m going to need to put together an outfit to wear but I need extra light to make sure I’ve got the color right.  I put my little Ott flip light on the “ironing board in the bedroom to help with that.  I also have an Ott floor lamp in the bedroom for extra light.  I can put the little Ott in my purse if I need extra light to find something.

Speaking of my purse, I carry my iPad Mini, Smartlux reader and MaxTV lenses in my purse.

 

We did not go out to lunch today but if we had, I have my Smartlux reader/magnifier in my purse to read menus.

 

 

Glasses to cut down on glare
NOIR glares glasses
Small monicular
small monocular

Later when I take the Beastie Baby for her walkies I will have my glare glasses on and my monocular around my neck. Since the old darling and half of the other dogs get to run off lead at the dog park, it is good to be able to see which of our friends is across the field.

 

Sue's Telescopic Glasses
Max TV Telescopic Glasses

This evening if I want to watch TV, I have my Max TV telescopic glasses. I use those to do classroom observations at my school job. The little kids like them because my eyes look huge when I wear them. They can be handy in a store when I’m trying to find something.

 

 

Those are the basic, low vision tools I use at home. If this were a workday I would also tell you about the zoom text app on my work computer. Absolutely essential if you are using a standard PC.

Hope that quick review helped. Don’t give up hope. With technology, things can be a lot better. Remember, comparatively speaking, you are losing your vision at the best time in history thus far.

If you want to review the pages where I talk about these devices, you can use the 3 ways to search our website: 1) search website; 2) categories and 3) tags/keywords. You can find these either in the right-hand column or at the bottom of the page.
Continue reading “A Day in the Life”

There’s No Place Like Home

Did I happen to mention I do not do well with downtime? I had some things scheduled today. Plan A was the cruise. That went down the tubes. Then I was supposed to testify in a court case (not my own!). That has been continued until the end of summer. So much for plan B.

Nephew #1 is coming around later to “take me out” (as if I were a dog?????) and do a little shopping. Hip hop is this evening but I need to deal with now.

Since I am stuck at home, I figured I would listen to some of that audio book about safe living at home. It is called Making Life More Livable and it is available from BARD. [It is also available from AFB in paperback, e-book and online/download forms.]

Although the book stresses there is no one size fits all adaptations, it does make some basic suggestions. Also – note to caregivers – it stresses it is important for anyone making adaptations to actually look at the set up already in place and ask the visually impaired person what he thinks and wants. And yes, I find that to be common sense but if there is one thing I have learned in life, it is common sense is not so common!

So, onward!

Running into doors is apparently a common accident. Sliding doors or leaving doors off of cupboards and rooms altogether is suggested in the audio book. If you cannot take doors off, making an effort to keep them all the way closed or all the way open was suggested. Curtains and beaded hangings could also be used and are a lot softer when you run into them!

Rugs are another hazard. If the edge is coming up, tack it down. Do the same if the rug slides on a slick floor. Sometimes it may be best to just remove the rug.

You may not, however, want to get rid of small, area rugs entirely. Rugs of a contrasting color can be used to define an area. Remember I once missed the last step and almost twisted an ankle? The dark tile at the bottom of my dark-carpeted stairs now has a light-colored area rug covering it. So far, no more missed last step there.

Door sills are supposed to be another big cause of accidents. If you have door sills, hopefully they are beveled so your toes don’t clunk into the sides of them. If they are not beveled, painting them some crazy color might be helpful. Yellow not required. Be creative. After all, we are the generation that introduce the term ‘psychedelic’ to the world!

That is what I have learned so far. Hopefully helpful. 11:30. Pet the dog. Lunch. Listen a little longer. I will let you know what else I learn.

Click here for more ideas from the book.

Continue reading “There’s No Place Like Home”

Books and More Books

I just set up my BARD account. It was actually pretty easy.

They made me swear on my soul I would not allow anyone – and especially anyone without a disability – to use my password and listen to BARD books. I guess I will have to make sure no one is lurking in the bushes under the windows when I listen to my books ! ☺

I have checked out the new offerings. There is a serious range of them. They have everything from last month’s Seventeen magazine to science fiction by Isaac Asimov to a work about the great extinction of the dinosaurs. There is also a load of French language books.

There is a list of popular titles. It looks like my favorite authors are the favorite authors of a lot of other people. Top of the list are Kellerman, Deaver and Patterson. Even better, there are several titles I have not yet read. All together, an excellent collection of stories for me.

I have not yet checked out the professional or reference works. However I would expect the offerings are extensive.

Now I probably missed the directions, but it took awhile for me to figure out how to download a book. I was not able to download from the BARD website. Obviously doing something wrong; or maybe not. I am not sure. I instead went into the BARD app that I had downloaded from the App Store.

I browsed through the titles and put one on my wishlist. When you open your wish list there is an ‘i’ in a circle on the right hand side. Hit the ‘i’ and your book will download. Once it is download, tap on the title and a representation of the player they sent me comes up. Hit the green button and the book starts to play. Sit back and enjoy.

Of course, now comes the not so good part. While BARD looks pretty good to this dedicated consumer of murder mysteries, it may not satisfy the needs of all. If you are a newspaper reader you are out of luck here. There are obviously no local dailies included. Wall Street Journal did not come up on a search and there were only a handful of old articles taken from the New York Times. No ‘scandal sheets’ as they were called at our house when I was young. If you want to know how the yeti is getting along with his alien abductors you will have to look somewhere else.

If you qualify for BARD it appears to be a nice option for those of us who enjoy a good book. Happy listening!

Continue reading “Books and More Books”

Toy Story, Again

My habilitation person came yesterday. I was hoping she would have my iPad so I would be one step closer to being able to work full-time but nothing was delivered. We are hoping it will all come in next week.

My habilitation person wants to load up the iPad before she gives it to me. She wants me to have something called the KNFB Reader. The KNFB Reader is recent technology (2014) for Apple and Android phones and tablets. My habilitation person says you can take a picture of any text and the KNFB Reader will read it to you. Sounds pretty cool.

The KNFB Reader is available for purchase in the Apple App Store. Again, not a recommendation and not making a cent on any kick backs. My habilitation person wants me to have one so I am getting one. Just want to let you know it exists and is available for $100.

Since we recognize the iPad shimmies all over the place when I am trying to read with it, we also talked iPad stands. Another option for an iPad stand would be the Just Stand V2e. This one looks very much like the one we talked about before.  Only this one is only $140. You know the drill: not a recommendation. Be aware it is an option. The end.

The habilitation lady did bring sun glasses. Or, more accurately, she brought glare glasses. We spent time running in and out of the house seeing which pair she had brought would reduce glare for me the most.

I could have had two pair. One would have been for inside. Never really thought of indoor sun glasses, or glare glasses but apparently there is a lot of glare inside too. Glare is bad business when you are trying to see with AMD. Anyway, could have had two pairs but the same pair worked best both indoors and out.

The frames on the glare glasses were not too awfully bad. Some of them looked like those black things that I refuse to wear because I have no intentions of looking like I am 107. However, there were several that were acceptable to the fashion conscious. They were also big enough to fit over eye glasses.

[Sue doesn’t have the glasses yet but when she does, she’ll take a photo of them for us to see.  In the meantime, click here for examples of glasses that reduce glare indoors and out.]

The habilitation person also helped me register for BARD. Again, registration for Talking Books is required before you are accepted to BARD. The BARD folks warned they screen each application individually before they accept you. They said it would be days but I got my approval in hours.

This time I am responsible for the lack of progress. I did not make up a password yet. The weather is nice and it is time to be outside. More later! Continue reading “Toy Story, Again”

Talking Books

My ‘talking books’ player came yesterday. It was ordered several weeks ago. One more incident of the wheels turning much too slowly for me, but at least it is now here. I am an impatient sort but I can still read regular text with my CCTV and handheld reader. Hopefully they served some other poor, impatient soul without my resources while I was waiting.

But I kvetch too much….

The player is this cute little thing with all sorts of big colored buttons. The first time you press each of them it gives you a description of what it does. After that, it is supposed to work normally. I suspect I will remember about half of what it said to me. There are some Braille directions but nothing else printed about the player.

I am thinking the visually impaired are supposed to have great memories. Either that or there is a lot of trial and error.

But again I kvetch. Not really complaining, just noting rather judgmentally, which I am not supposed to do a la DBT.

I just started to read the booklet they sent me. Not a lot of authors I recognized but then I read the explanatory page – when all else fails, read the directions, right? – and discovered what they sent me was the new titles for March and April. Access their website and there are tens of thousands of offerings. Click here to go to that site.

I just checked that link and it is good. Maybe even better than good. It contains all sorts of info including who is eligible and how to sign up for the service. Check it out if you can.

Another thing I want to check out is BARD. That stands for the National Library Service Braille and Audio Reader Download. I had seen the App for this in the Apple App Store but this was before I was a registered user and I was not able to download it. The lesson for you there is this: don’t waste your time on BARD until you are registered. It won’t let you on.

According to the literature from National Library Service (NLS), BARD can be downloaded not only from Apple but from two other sources. These sources are Google Play (Android) and Amazon’s App Store. I know it is free on Apple and I suspect it is free the other two places as well.  Click here for links to both versions.

But back to talking books. The player is easily portable. It has a battery if you are away from a power source. You can speed the voice up or slow it down without distortion. If you also have hearing loss in a specific range, you can alter the pitch of the voice. James Earl Jones to pretty much Mickey Mouse.

I also have to compliment them on the packaging. I got the player out of the box by slicing one piece of tape and opening the lid. No playing around trying to get the accursed thing open, breaking something or accidentally slicing yourself.

Also, the tape boxes are cool. They are hard plastic with simple latches. The tapes will only go in one way. Ready to send a tape back? Flip the address card on the front and slide it into the slot. The card even has a hole punched in it. Upper left hand corner punched? Return address is up. Good going packaging people!

So that is it for now. My habilitation person is coming tomorrow. If she can get me on BARD, I will pass on the info about how it was done. Continue reading “Talking Books”