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”

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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

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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!”

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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.

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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

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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.

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