Limping Along

Wednesday. Morning! I am in the pre-vacation rush. Not quite ready to pack and get my head in vacation mode but trying to put as much at home ‘to bed’ as I can. Last evening I spent two hours working on stuff for school. Even with that and whatever else I can do in downtime, it is going to be a crunch to beat deadlines when I get back.

To top things off my CCTV died yesterday. What a glorious mess that has been! I tried calling everyone I could think of. Blindness and Visual Services have two loaners and they are both out. The district has nothing and the educational resource organization that serves the district has nothing. I even called the local college. Nothing. The local assistive technology store did call me back but by that time I had a line on some help from Eschenbach.

I have to hand it to Eschenbach. They have helped me several times in the past and they are coming through for me now. I have a loaner machine coming along with an authorization for repairs for my machine. I am hoping the repairs will be done for when I have to go back to work in two weeks.

In the meantime, I got a lot of help today. When you cannot see, adding columns of numbers on tests can be a challenge. I asked several people to check my work. Better to be safe than sorry. Did not do too badly but I would not want to try to function that way every day.

Lesson? Nothing new really. I just needed to advocate for myself and keep pushing until I got the help I needed. Somebody often knows somebody who knows somebody who might have an idea about someone else. Consider it a quest!

People care. BVS called today to see how I was coming along. They had been working their contacts for me, too. Just did not have a lot of luck.

I guess that that is another point. Don’t burn bridges. Be appreciative. All those things they taught in Sunday School or your Sunday School Equivalent. People will put forth effort for people they like. Smile!?

I find it a bit distressing, however, that I had to reach out two states away for help. Eschenbach is in Connecticut. I would love to have resources a little closer to home. The guy from the vision store suggested I contact the local blind association. Not sure if the Office on Aging or some other such thing could have been of help. Probably need to inquire. Now that this has happened I feel as if I need a viable disaster plan for when it happens again.

So that was my day. Not an easy day at work but sort of gratifying. My problem is going to be solved. People cared and were trying to help. I would have liked to have laid my hands on a ‘spare’ within the hour, of course, but that was probably unrealistic.

I can limp along for the next few days.

Written October 25th, 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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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”

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The Stuff of Life

Good morning. Fair warning; I might just ramble on this page. A bunch of little things happening. Nothing major.

Of course, little irritations are the stuff of life. I am also thinking they are more the stuff of low vision life.

I am waiting for transportation but I have no idea when they are coming. I got a call but the recording never clicked on. That meant anywhere from one minute to a half an hour. Better than yesterday. Yesterday they never bothered to put me on the schedule!

Fortunately my husband was able to take me. I seem to have a large number of ‘saviors’. Did I tell you a total stranger gave me a ride home from yoga? I was sort of stuck. The stranger told me she has been taking class behind me for six months. Couldn’t prove it by me.

That is a bit embarrassing. The next class also gave me a problem. I really wanted to talk to her but I could not see if she were there or not. What was I supposed to do? Walk down the back row staring at people? That would have been a bit weird.

I finally decided she had been told (and had observed!) that I am visually impaired. If she wanted to talk to me, she needed to speak to me first.

Why doesn’t someone write an etiquette book for these things? Miss Manners for the Proper Low Vision Sufferer!?!? There have to be some sort of rules! I get frustrated having to reinvent the wheel all of the time.

I got my CCTV back from the repair shop. I held on to the loaner a few days just to be sure all was well with mine. Also because returning the loaner was a semi-major event. Pack it up with all sorts of cushioning. That, of course, made it all a little too much for the box so one of us had to hold it closed while the other one taped. Then I discovered they had neglected to include free shipping labels so I needed to call for them. No to mention getting the bulky box out the door and to UPS!

(UPS will pick up. You can schedule a pick up by calling 800-pick ups which is 800-742-5877. However, their website does mention a ‘residential surcharge’. How much, no clue. We are the strong back and weak mind type and just always take things to the store.)

It would be nice if there were local repair options but I don’t believe there are. FYI, though, when I was not sure the company was going to be able to supply me with a loaner, I called Blindness and Visual Services. As a former client I could have borrowed one from them, quality not guaranteed. Pack that one away in your memory for a rainy day with a ‘sick’ CCTV.

Last thing for this post, I have my first visually impaired counseling client! I won’t say much about that person because of confidentiality. Instead, just a quick comment about my (of course!?) thoughts on it. To wit: it is happening slowly but it is happening. Remember that stuff about God closing a door and opening a window? The stuff about not forcing your fate???? How about “build it and they will come”? There you go! We are building and they are coming. Cool. Continue reading “The Stuff of Life”

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Parts Is Parts

Today was sort of an ‘eye day’. Spent most of my day talking about vision or dealing with my ‘toys’. “Mama said there would be days like this.” [Lin/Linda: I don’t know if Sue intended this but this song came to mind!]

Toys first: my CCTV is broken again.

Apparently when they say portable they don’t mean what I mean: hauled everywhere and set up and torn down twice or three times a day. I lost another pop rivet so my document tray does not slide properly.

Also, my vertical hold comes and goes. Remember Outer Limits? “We will control the horizontal. We will control the vertical.” Whoever is controlling this is not me. It gets flipping enough to make me sea sick!

For future reference should you have this problem, we think it might be a loose wire. When I flipped the camera to distance viewing and brought it back, the flipping stopped.

Needless to say, it is going into the shop. It is going into the shop as soon as I get a loaner; that is…..Oh, and I am not paying the $50 diagnostic fee either. The cursed thing has a two-year warranty.

What can I say? I am hard on parts.

[Lin/Linda: if you were wondering about the title, when I read the above sentence, my mind went to the Wendy’s TV commercial where the catchy line is “parts is parts”.  Click here for the commercial.]

Today was also the vision loss support group. As anticipated, I was the youngest one in the group. I was also the most informed. I am half ashamed to admit that I ‘held court’ and lectured on my toys and some of what I considered to be AMD basics. The ladies – and they were all ladies – seemed receptive and asked me back.

I was a bit disturbed that several of the ladies admitted to owning iPads and having shoved them in a drawer!  They have no background or understanding of computers and they are afraid of them. The lack of knowledge about basic electronics – especially things that can make your life 100 times easier – was scary.

When I said you could get things in the app store I was asked if that was in this town or a town nearby! Oh my….

Which made me think some of you may be in the same boat.

The App Store is a blue and white icon on your desktop. It has a big A right in the middle.

Touch the icon/symbol and you will get a page of whatever apps they are featuring, often games. In the upper right hand corner there is a gray box that says search. Touch that and you should get a keyboard. Type in a keyword or phrase and then touch enter. Examples of keywords might be magnifiers, low vision apps, or knfbreader. Remember many apps are free but some like the knfbreader are for a fee. The ones for a fee you will need an Apple account. Actually, I think you need an account no matter. I always have to put my password in to approve the download. Lin, what do we have about opening an Apple account? [Lin/Linda: I’m posing that information below.]

That is about it for now. I have to email the group leader and remind her about passwords. Next month they are bringing their iPads!


Click here for a good place to start learning about your iPad.

Click here for instructions on how to create an Apple ID.

Click here for the ‘Dummies’ series For Seniors: Use the iPad Online User Guide.  There are also topics on this website about iPhones and Android devices (smartphones & tablets).

Continue reading “Parts Is Parts”

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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?”

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About the ADA

There was an interesting comment this week on the website in response to my page One Year Anniversary: Part 1 What I’ve Learned.  I was asked why I would have to quit my job when my vision got worse. The reader asked if the school was not obligated to accommodate me. She cited ADA.

The answer to that question is yes, and no. The Americans with Disabilities Act (ADA) requires employers to provide “reasonable accommodations” to employees with disabilities. Reasonable accommodations are defined as “necessary and appropriate modifications and adjustments that do not impose a disproportionate or unfair burden upon the employer.” The burden can either be financial or it can be in efficiency of getting the job done.

On the job I am already being given reasonable accommodations. If you look back in the pages, you will discover I have accommodations in pretty much all aspects of the job. When I do classroom observations, I wear telescopic glasses. I use my CCTV to do file reviews and learn my kids’ educational histories. When I test, I have my testing manuals loaded on an iPad so I can zoom in and read the questions easily. The tech department took days to do that for me! I use my CCTV again to record answers on the answer sheets. When I write reports with the assessment results I use ZoomText. Lots of reasonable accommodations in my work day!

When I become unable to see my kids to do observation, unable to read test questions to them or record their answers, I will have to stop working. Requiring the school to hire someone to do all that for me so I could ‘sort of’ do my job would be an unfair burden. I would not be doing my job, my helper would and the school would be paying two salaries. That is not fair not appropriate.

In basic terms, ADA does not require an employer to carry the dead weight of a disabled employee when she cannot do the job. What it does is allow those who can still function pretty well to keep working by changing just a few things.

The reader asked if learning Braille would not allow me to keep working. That is an intriguing idea and I may research and write a page on learning Braille as an older adult. Braille, however, would not let me keep my school job. Braille will not help me see what types of mistakes Johnny is making on his math papers. Braille won’t allow me to see how Susie is daydreaming in class. Those are integral parts of my job that require sight.

So, to summarize, ADA moves barriers off the playing field so the disabled worker can run down the field himself. Under his own power. ADA does not require the employer to carry the employee down the field on his back. I have reasonable accommodations per ADA but when I cannot fulfill my job duties using them, I am done. ADA cannot help me.

The learning Braille in my 60s idea? I will get back to you on that.

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