Jabbering

Greetings everyone! First of all, thank you for all of the birthday wishes [July 17th] and kind comments! I am amazed and overwhelmed. I sit here in my sun room, just kind of hanging out and having weird thoughts, and I sometimes forget there are real people reading the stuff. Probably better that way. I might become self-conscious. Not that that has ever happened in 64 years. No filters here. As in really NO filters. My mother used to ask me why I could not just LIE sometimes.

That said, nothing big planned for the b-day. Fighting rot and decay. I have my first physical therapy appointment for the rotator cuff tendinitis. Also, the container for the sand filter cracked and nicely soaked the garage with pool water so I am having the sand container replaced tomorrow.

Have you ever noticed you spend the first 40 years of life building and the next 40 trying to keep everything in working order?

My friend, the exercise enthusiast, and her family treated me to an escape/puzzle room last week. That was fun. We did the ‘tornado’ room. The premise is you have been hit by a tornado and you have to figure out how to open a locked door and escape before a second tornado strikes. This all involves finding clues and things you will need as well as figuring out a lot of ciphers. We ‘died’. We were only about ¾ of the way by the end of the hour and the second ‘tornado’ hit.

It was low light – a problem – and there were clues I could not read, but this is a team (up to 8) activity and I had people to do the fine seeing. I still have a brain and could sleuth out a lot of clues as well as have input on how to solve the puzzles. Enjoyed it. Would go again.

Low vision does not have to mean no fun.

And continuing to just jabber along here, I downloaded the Near Sighted VR app from Google Play. Lin sent me the cardboard goggles last week. My husband cut the hole for the camera to see through so it would actually be somewhere near centered. I downloaded the app. Nothing to that and the app is free, free, free! [Lin/Linda: it worked better for Sam at The Blind Spot and he says with some upgrades which he suggests, he thinks it will be an ‘awesome app’. Click here to see his review of it on YouTube.]

Not as enthralled with it as I was hoping to be. Not sure if the new phone (Hello, Moto!) does not have a decent camera or what the problem is, but I thought the image was pixel-y and a little wavy. Being a great one for motion sickness I am not sure I could use it very long without having an ‘incident’.  [Lin/Linda: there is also an app for iPhones called SuperVision Cardboard.  Click here for more information.]

Once again, although I would love to believe I am, I am not the final word on this stuff. I think we need other input on these products. Please let us know if you have tried anything and give us your input. My pans may be your picks and vice versa.

Last thing: I ran into a little gem called BookBub. They offer free and deeply discounted email books. Lin says she has used it for years and it is a good resource.

When dummy here set up her NaturalReader she failed to click on Kindle as one place she wanted to be able to download from. Cannot figure out how to go back and change the setting so I am in the process of also downloading the free version of NaturalReader. Hopefully I will be able to get into my Kindle account that way and give you info on how it works.

Once again, knowledge, insights, opinions? Please share. Support the cause. We are in this mess all together. Continue reading “Jabbering”

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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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Dear Amazon: A Love Letter

This is a love letter to Amazon. I don’t usually develop crushes on mail order houses. Yes, there was a time I was infatuated with the Sears Christmas catalog. However I was very young and it was probably puppy love.

I previously mentioned that Amazon has free e-books (it also has thousands of titles that you can pay for).  You can download an e-book to your tablet and make it just about as large as you wish. This little feature has made it possible for me to read. That’s exciting to me.

Amazon’s eBook reader allows you to enlarge the text as large as you want which has made it possible for me to read.  That’s exciting to me!

Amazon also has an amazing collection of stuff. You can get pictures and descriptions of this stuff on your tablet. Once it’s on your tablet you can again make it as big as you like. You can actually see what you are interested in buying.

Amazon’s amazing collection of stuff includes all sorts of nifty things for people with visual impairment. Sort of one-stop shopping for those of us who don’t see so well anymore and may depend upon others to get around.

Click here to see products that match ‘visually impaired’.

So far I have purchased fashionable sunglasses that don’t ‘leak’ light along the edges and a halogen floor lamp with a magnifying lens and a clip attached to the pole. Since I am name-dropping in this post, I will tell you my lamp is named Ott. Ott works great but occasionally gets a little tipsy. I have his – er, its – base shoved under the night stand. Solves the problem.

I am waiting for neon-colored paper with dark, black lines. Amazon has dozens of types of pens. I have been told there is a black pen that doesn’t bleed through the paper. Hoping to find out the name of those pens soon. Maybe I can order them from Amazon.

Amazon has neon-colored paper with dark, black lines and pens that don’t bleed through the paper.

If you want a little something to share with friends, Amazon even has a 50 pack of magnetic Amsler Grids. You know what I am talking about. Your eye doctor probably gave you one as a consolation prize when he diagnosed you with your first drusen. Maybe he got his Amsler Grids from Amazon!

Made a discovery when I was researching the Amazon site. There is actually a music (rock?) group called The Amsler Grid. Strange. Maybe somebody in the family is an ophthalmologist. Anyway, you can buy their music on Amazon, too.

There really is some amazing stuff out there. If you want something enlarged or to talk to you, they have it. Some of the stuff is bilingual. Habla Espanol? The thermometer does.

From Old Maid cards to multicolored rock salt, it seems to be available in the visually impaired section at Amazon. Amazing.

Amazon has everything from magnetic Amsler Grids to bilingual products to Old Maid cards…and more!

Continue reading “Dear Amazon: A Love Letter”

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Tech Talk

On one of my ‘out to lunch’ ladies’ excursions we stopped at our local cellular store. I had been having difficulty with my cell phone. Or perhaps I should say my cell phone was having problems with me. I was unable to read my text. I was calling people I had no intention of calling. It’s amazing how similar some names appear when you really can’t see them well.

I was unable to read my text. I was calling people I had no intention of calling.

Tyler took my friend and me under his wing. He got into the accessibility menu of my telephone and tried to make the font big enough for me to see. He tried to point out all sorts of exciting things that could be done with my Android phone. It’s rather amazing what is on such a small machine.

Tyler wanted to put TalkBack on my phone. I demurred. I had already had it on and had a devil of a time getting it back off again. A sweet young woman in Maine and I spent 10 minutes laughing together. We could not shut the TalkBack lady off! Every time the phone was jostled that accursed voice would tell me the time! Things got so bad I suggested the young lady make a house call to help me out. After all Maine is only 8 hours away and this was an emergency! Thank heavens, I was finally able to quiet the TalkBack lady before we needed to go to these extreme measures.

There are accessibility features on both Android and Apple phones. Some are more trouble than they are worth.

So why am I talking about my interactions with the cell phone people? Well for one reason, these encounters once again prove my point that there are wonderful people in the world. I truly believe most people will help if you give them the opportunity. It makes people feel good to help. This is particularly true if the person they are trying to help maintains a sense of humor. A strong sense of the absurd is helpful, too.

I truly believe most people will help if you give them an opportunity especially if you maintain a sense of humor.

Another reason I have for highlighting these encounters is they gave me an opportunity to use the DBT Comparison Strategy. You remember: that is the Distress Tolerance Skill that basically says “hey, things could be worse. Look at that poor guy!” OK, maybe not those exact words, but you get the point.

“Hey, things could be worse. Look at that poor guy!”

I was thinking about what my father had to help him when he had AMD. He made do with a hand-held magnifying lens. Twenty years ago that was pretty much the state of the art.

Comparatively speaking, now is a great time to be losing your vision. Probably the best time yet in the history of the species. How do you like that for cockeyed optimism?

There is so much more to help people with low vision than the hand-held magnifier of 20 years ago.

I mentioned that I have always been an avid reader. Right now I cannot pick up a book or a magazine and get much out of it. However, I have read The Secret Garden in the last few weeks. How? Amazon has free classics to download on a tablet. I have a zoom feature on my tablet that allowed me to magnify the text. I may have had to turn the page at every paragraph, but I read the book.

I even solved the problem of ‘mystery novel interruptus’ that happened when I had to stop 30 pages shy of the end of a new releases paperback I had. Joy of joys, the Bureau of Blindness and Visual Services tech guy loaned me a CCTV. That is closed-circuit TV. You put a paper or whatever you want to read under the camera and it shows up HUGE on the screen. It will have to go to the office when I go back to work, but right now I can get away with trying it out on some things here at home.

The tech guy loaned me a CCTV which makes things you put under the camera HUGE.

The bottom line for this post? You have technical resources. Get yourself to your friendly neighborhood tech or phone store and ask for help. Devices you already own – a cell phone, a tablet – have accessibility settings. Ask someone to help you use them. We have more resources to help us than any generation before us. Comparably speaking, it’s a pretty good time to lose your sight.

You probably already own a device that has accessibility settings.  Ask someone to help you use them.

Continue reading “Tech Talk”

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