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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Keep On Learning

Hey, there! How many people saw the total eclipse? I am soooo jealous!

Pennsylvania was nowhere near where I ‘should’ have been but one of the teachers bought a couple of dozen pairs of glasses and handed them out. We got to see ‘something’.

However, I understand being able to see totality is AMAZING. Hopefully I will see it before I die…or go blind, or run out of money, or whatever.

One more thing for the bucket list.  To use another old saying, my eyes have always been bigger than my belly when it comes to cool experiences. The list never gets smaller.

Looking around at the people who stood outside and passed around a couple of pairs of eclipse glasses, I realized I was looking at the intellectually curious among us. Intellectual curiosity is a desire to KNOW. It is a good trait because it leads to growth. Huffington Post says intellectual curiosity correlates with happiness. We should all be intellectually curious, happy people!

There are articles about fostering intellectual curiosity in visually impaired kids. After all, they cannot see the glories of the world and be enticed. We want them to want to learn and explore.

I could not find much of anything on fostering learning and intellectual curiosity in the visually impaired elderly. What I did find was reference after reference to the Institute for Learning in Retirement (ILR) and Road Scholar.

They sound rather interesting. ILR seem to be located on a number of university campuses – of course, not here! I need to talk to someone about all these gaps – but a lot of the biggies, like Harvard and MIT, and even some of the not so biggies, like Slippery Rock University of Pennsylvania. Their programs cover a wide range of subjects and are for a fee.

Road Scholar is just what it sounds like. (Unless you thought it was studying maps and/or pavement, in which case you have a very interesting mind!) They take educational trips. This is obviously a for fee program.

I know nothing about either of these. Just offering them up as things to explore if you are interested in furthering your education for fun and/or profit.

Come October my friend has me taking a four evening, continuing education class on the first – which number was Calvin Coolidge? – 30 presidents. Nothing I would have chosen on my own, but it is four evenings out and I might learn something. Like Coolidge was the 30th president! Never say we are not educational.

The point of the previous paragraph being this: local educational institutions in your area may also have continuing education courses for a small fee.

Even a small fee not in the budget? This may be my find for the day: Open Culture. We are talking free, gratis, no charge.  They advertise 1,250 online courses plus audiobooks, movies AND language lessons. You want to learn how to find the restroom in Mali or Ethiopia? This site will tell you what to say. Very cool.

One more way to keep us all engaged in life in spite of our visual impairment. Be curious. Explore whenever and wherever you can. Who knows? Someday you too may be able to ask for the restroom in ten different languages. What? May be an important skill, ya know?

written August 22, 2017

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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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Timeline Part 1: Advances in Treatment & Care for People with Macular Degeneration

It’s Lin/Linda.  I created this page to go with Sue’s page Not Your Parents’ AMD.  Like some of you, I had a loved one with AMD.  It was my father who was diagnosed with AMD in 2005 at the age of 82.  At the time, I was living 700 miles away and I did not know much about the disease or at what stage he was diagnosed.  He progressed to geographic atrophy (GA), that much I knew.  He was the sole caregiver for my mother who had Alzheimer’s Disease.  He continued to drive (not safely), take care of her and the house.  He was never referred to vision rehabilitation or offered any help other than being told to use handheld magnifiers.

I wondered how things have changed since then which led me to do this timeline review.  Not only have there been advances in the medical end of the field but also in the technology that is allowing people to remain independent for as long as possible.  That is if a person learns how to use the various devices and apps available.

I’ve based the categories of time on an article Age-Related Macular Degeneration
1969 –2004: A 35-Year Personal Perspective by Stuart L. Fine, MD published in 2005.  He says “In 1969, patients with AMD constituted a small part of a typical ophthalmic practice. From 1969 to 2004, the prevalence of AMD has increased, and the methods of evaluation and treatment have changed dramatically.”

I know I have missed many events that have been critical to the history of the treatment & care of AMD.  There is SO much information out there and I’ve tried to use the most significant dates I could find.  Have a suggestion of what to include? Did I get a date wrong? Let me know in a comment or send me an email at light2sight5153@gmail.com.

1st Era: 1969–1979
  • Emergence of fluorescein fundus photography: test used in diagnosis of retinal diseases
  • Development of ‘hot’ (high power) laser photocoagulation, first treatment for wet AMD
  • Relationship of drusen to age-related macular degeneration
  • Other developments:
    • 1976-1977 first personal computers affordable for home use
    • more low vision aids:
      • 1960s large print books became available
      • 1976 large print calculators became available
      • 1969-1970 CCTV (closed caption TV) for reading aid
2nd Era: 1980–1994
  • Clinical trials to evaluate new treatments, especially laser photocoagulation (1979-1994)
  • Development of risk factor data from large and small epidemiologic studies (epidemology is looking for patterns & causes)
  • mid-1980s term ‘senile macular degeneration’ becomes ‘age-related macular degeneration’
  • Other developments:
    • 1982 Vitreous Society was founded; 1983 first meeting attended by 44 retinal specialists
    • 1991 OCT (Optical Coherence Tomography) test used in diagnosis of retinal diseases
    • mid 1980s name changed from ‘senile macular degeneration’ to ‘age-related macular degeneration’
    • 1992 Americans with Disabilities Act (ADA)
    • 1983 first cell phones
    • 1991 World Wide Web for ‘surfing’ the Internet with easy-to-use browsers
    • low vision aids:
      • MaxiAids catalog of aids for orders from people with low vision & other impairments
    • technology/low vision aids:
      • 1982 DragonSystems founded Dragon NaturallySpeaking, speech to text
      • 1988 ZoomText was released which is software to magnify text on a computer screen
3rd Era: 1995–2003
  • Evaluation of radiation therapy for neovascular AMD, not proven to be effective
  • Assessment of pharmacologic interventions for neovascular AMD; Photodynamic Therapy (PDT) “cold” (low power laser) with Visudyne (first drug treatment;  2001)
  • Prevention trials: results AREDS released 2001
  • Other developments:
    • 1995 Amazon sells books online (1998 expands beyond just books; e-books 2000)
    • 1996 Google released
    • 1998 first e-book reader The Rocket
    • 2000 GPS available for civilians; 2001 personal navigation systems available like Garmin and TomTom
    • 2000 Microsoft & Amazon sell e-books
4th Era: 2004 – 2017
  • Completion of ongoing trials for neovascular AMD: FDA approval: Macugen 2004; Avastin 2004; Lucentis 2006; Eylea 2011
  • Earlier identification of eyes at risk: regular use of OCT (Optical Coherence Tomography) and other diagnostic tests
  • Prevention trials: results AREDS2 released 2013
  • Increased number of retinal specialists: eg, American Association of Retinal Specialists (ASRS), formerly Vitreous Society (see 1982 above), has 2700 members representing 60 countries.
  • Other developments:
    • 2011 First baby boomers turn 65
    • 2004 Facebook
    • 2013 first ‘bionic eye’ retinal implant, Argus II approved by FDA
    • technology:
      • 2007 Amazon Kindle e-reader; iPhone & Apple IOS
      • 2008 Android 1.0 & Android phone
      • 2010 Apple iPad
    • technology/low vision aids:
      • 2005 Apple VoiceOver for Mac users
      • 2009 VoiceOver added to iPhone IOS
      • 2010 FDA approved implantable telescope
      • smart glasses/wearable technology
      • 2014 KNFB Reader app for Apple & Android; 2017 for Windows 10
    • ongoing research areas:

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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”

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