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

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Coping: A Review

We are coming to the end of the first dry day in about a week. Apparently, it is “monsoon season” in Central Pennsylvania. Creeks and the river have been running down main roads and getting from here to there has become an adventure in problem-solving, not to mention creativity.

Having clients stranded or pumping out basements has left me with time to “play catch up” and actually get some things done at work. Hallelujah. Not as stressed as I was.

Lin told me there has been an influx of new Facebook group members. She reported there are many new members struggling with the diagnosis and wondering about the future. She has been republishing pages about coping skills, but I thought I would do a quick review anyway.

First of all, the chances of you going totally blind are small. Age-related macular degeneration is a condition of the macula and affects central vision. It is important all patients with AMD to learn the facts about their condition. Knowledge truly is power. What we imagine is often 100 times worse than reality. Often that monster under the bed is actually a dust bunny. And no, I am not trivializing AMD and calling it a dust bunny. However, it only has sharp horns and razor-sharp fangs if you give them to it.

Get the facts. Knowing what you are dealing with is a lot less scary than what you imagine.

Along with getting the facts goes acceptance. We cannot solve a problem unless we accept we have a problem to solve! Acceptance that, yes, you are truly in this fix will allow you to go and look for help. Fighting reality may work for a while, but in the end, we get creamed.

I will admit I got more from agencies than many other people get. I admit it. I have a big mouth and a will of iron. I am obscenely stubborn. For another thing, I am still working. People who are not working don’t get as much. After all, in my state Blindness and Visual Services is a subsection of the Office of Vocational Rehabilitation. Their whole goal is to keep you working.

That means ideally, if at all possible, you go to agencies while you are still working or at least are in a position to go to work. If you are not in those positions, go anyway. People who do best with vision loss are those who learn practical skills and get the necessary assistive devices. Even if they won’t pay for your devices, agencies can make recommendations for things you might eventually purchase.

If I had to say which one thing to have, it would be an iPad. There are multiple, free apps that can take the place of more expensive equipment and do the job almost as well.

So those would be my recommendations for starting to cope well with AMD. The start is to reclaim your power. Remember vision loss can be damn inconvenient, but in the end, it is a limiting factor, not a paralyzing one. And in the end, just like traveling in a flood zone, with a little problem solving and creativity, you can get there!

Written August 16th, 2018

Next: I Know Who I Am

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Sue’s Toolkit – 2 Years Later – Part 2

Hi. Sunday and the snow is coming down! All day I have been fighting “it’s snowing! I don’t have to do my work! We will have a day off tomorrow!”

That’s me, by the way. There are no school-aged kiddos in this house. I have been fighting procrastination ever since the snow started around noon. Did manage to get some of my ‘homework’ done. One report written. I don’t want to think about how many more to go!

So, taking time to write a quick page before going on to report #2. I got one of my mymacularjournal.com ‘homework’ assignments back from Lin. Full of ‘red marks’! “Did you mention this? How about that?” Good grief!

I told her I would blame my having to do this page on her.? So there. [Lin/Linda: What can I say…we have high standards here. ::grin::]

Here we go…what has survived the test of time redux.

First of all: these are not advertisements. There are plenty and PLENTY of other products that mostly likely work as well. These are the ones I tried and they worked for me. I have no investment in any of this stuff. If you use other things and like them better, make a comment, write a page. We want to hear. Also, caveat emptor. If you buy something and “hate it!”, it’s not my fault. These are not recommendations.

Now that that is out of the way…my CCTV is from Low Vision International. The model is the Magnilink Zip 17. The 17 is for the screen size. Lin wanted me to tell you what I have and like but, remember, there are probably dozens of others. The big selling point for this one is it is portable. Maybe about 20 pounds including the case. It goes to school. It goes to the office. It goes home. Good deal. Don’t need portable? Maybe this one is not for you.

Lin also wanted me to mention the iPad with the Justand. I seldom use it but if you cannot get someone to plop down $3500 for you to get a CCTV?  The iPad on the Justand is a viable alternative. [Sue wrote about the inexpensive Justand that holds the iPad above what you want to look at. You can see the image on the screen and can enlarge it as needed.  Her page Good Stuff Cheap.]

Why do I seldom use it? I have a portable CCTV. Using my iPad as a magnifier means it is not available for anything else.

Like watching TV for example. Lin asked how I watch TV on my iPad. (I think she knows. It’s a test.? She wants to see if I really know!) I went to the app store and searched for some of my more favorite networks. I have CBS, NBC, PBS and FOX apps on my iPad. You have to ‘subscribe’ (read ‘buy’) if you want the good stuff. By good stuff I mean prime time and current, but sometimes they throw you a bone and you can watch your shows for my favorite word: free. Most of them require you watch the commercials, but sometimes the commercials are the best part! [You can also subscribe to services such as Hulu and Netflx and watch their programming on the TV or on your tablet.  If you are an Amazon Prime subscriber, you can also watch TV shows and movies on the TV or tablet many are free, some have a cost.]

And when I say require, I mean just that. You cannot fast forward through them. But you can go to the bathroom or get something to eat if you want.?

Oops. This is getting long. Catch up on the rest of the questions later! I gotta get something to eat. (Bet you thought I was going to say something else!?) Bye!

Written Feb. 1st, 2018

Continue reading “Sue’s Toolkit – 2 Years Later – Part 2”

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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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:

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”

Cautionary Tale

So, yeah. I am a little hard on parts. We just boxed up my CCTV to go into the shop and now I have cracked the screen on my iPad. ? Never a dull moment.

OK. My tablet just capitalized never a dull moment. Huh? Turns out it was a 1950 movie. Not sure why the tablet would ‘think’ I meant or even knew that reference but machine intelligence is different. I seem to add to my fund of useless knowledge quite regularly that way. Tablet making weird and esoteric connections. [Lin/Linda: I think it’s a conspiracy against ME…gives me more weird links to find! BTW, there was a 1968 movie of the same name.]

So, back on track, I dropped my mini and there is a nice crack in the screen. I was all ready to take it to the iPad ‘doctor’ and have it repaired but financially that may not be a plan. According to Lifewire that would’ve been a case of the cure being worse than the disease.

The Lifewire post on iPad screen breaks assured me my iPad would probably continue to work with a cracked screen. They say it will work not only with the nice, clean, linear crack my mini has but even when the screen is shattered! Of course, having spider web cracks on your screen would not help seeing what is there and we have these things, at least in part, to help with seeing! That could be a problem.

According to the post, it would cost $199 to get my screen repaired. I just paid $220 for the next better mini iPad brand new. Mine is now a year and a half old. You can see where the numbers are leading: repairing a screen is probably just not defensible from a financial viewpoint.

So, what are the options? Again according to the post, if your device is still under warranty, you might be able to squeak by with a service charge of $49. Apple Care does cover accidental damage so if you are ‘hard on parts’ like I am, you can get it fixed with minimal financial pain.

If it is not a bad break and everything still works, just living with the crack may be your best option. The article suggests getting a protective case. Exactly what I intend to do. An example of another old adage: closing the barn door after the horse runs away!

I have Otter cases for both my phone and the big iPad that Blindness and Visual Services bought for me. I am pretty happy with them. At least those devices have not broken yet!

I just ordered a neon green and a berry purple mini iPad case from the marketplace for the known Universe, Amazon, of course. $10 apiece on sale. I have Prime so it is free shipping.

I also ordered UV filters for both of the devices. (I actually have my technophobic husband using a mini!) Remember blue light is ‘bad’ for your retinas and electronic devices are primo sources of blue light.

Just read an article saying Baby Boomers are not as aware of UV damage and not taking as many precautions as younger folks. I was going to write a page on it, but I pretty much covered it there in two lines, so don’t hold your breath waiting for the page!?

So once more I am the ‘star’ of a cautionary tale. Protect your devices. Repair costs are reported to be just plain nasty. Cases are cheaper.

Written April 16th, 2017

Continue reading “Cautionary Tale”

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?”

A Day in the Life: Work Day

Sunday evening and I am getting ready to start another week. Wow. I was always told time goes faster as you get older but sometimes it is ridiculous!

I was also told time flies when you are having fun, so I guess I am having fun! And, yes, it is possible to have fun with AMD.

Maybe we can do a book or an infomercial on that: Fun with AMD. Sort of like Fun with Flags from the Big Bang Theory. Any thoughts on content?

Anyway, I went to my exercise classes and wrote a couple of pages yesterday. Walked Beastie Baby. Today was a haircut and a trip to the local warehouse store. Also actually wrote that report I was putting off. Sorted some laundry. Found an audiobook I want to listen to. Busy, busy, busy.

But for me, busy, busy, busy is better, better, better.  Not only do you distract yourself with activities, but you get to use your talents.  Sometime in Sunday school I learned we are supposed to use what we were given. It was never said you use what you were given until you start going blind.

So onward! Lin suggested I do a page on a normal weekday. Okey dokey. Monday.

The time I get up is determined by what time the crazy transportation company says it is going to pick me up. I have learned I also need to be ready about 15 minutes before they said they would be here because they are frequently early. Jeez. Flexibility is a virtue.

Monday is different from a weekend day because I have to really be sure my clothes match. I cannot slink home in humiliation in an hour or so because colors I thought were one thing are another and clash….badly.

OttLight

I have a small OttLite on my ironing board but the best bet is still natural light. If all else fails, I ask my husband “what color is this?”

If we were talking Thursday for the weekday, I have to make sure I have everything I need for the entire day. That means I get on transportation with CCTV, purse, briefcase, lunch, yoga mat and workout clothes. Having a good memory and a strong back are also virtues.

Justand V2

Back to Monday. At school I set-up my portable CCTV. I turn on my computer and ZoomText is soon up and running. These things are invaluable. At home I often crank the font size up to 28, but all that magnifies is the text. ZoomText does everything on the screen. If you are on your computer all day, ZoomText is worth the investment. Also LOVE my CCTV, but the price on that is salty and you can get similar results with an iPad and Justand.

Sue’s Eschenbach Smartlux Digital Magnifyer

I check for lunch choices with my handheld reader. I also read anything I cannot get to my CCTV with the reader. Something nice about the reader is I can hold it up to something slightly above my head and take a photo of it. Nice little feature.

Since I was always dropping my reader – slippery little devil! – we put a lanyard on the arm on the back. I can wrap the strap around my hand. It has gone on the floor much less since.

 

To review some of these devices, check out Sue’s page A Day in the Life.

Sue’s Telescopic Glasses

My telescopic glasses help me do student observations. I look like an alien, but the kids are used to it.

Books such as testing manuals have been scanned onto my iPad. My tech person at school did 90% of the work but I also scanned. It was a bit labor intensive but it allows me to read questions and score.

That is pretty much a work day. Questions? Continue reading “A Day in the Life: Work Day”

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”

Highlight: Where can I get podcasts?

Do you know what a podcast is?  Click here for a great article that explains what they are and how you can find and access them.  It also has a great list of podcasts for those with low vision including ones from RNIB (UK) and several about technology for people with low vision.

For the purpose of this page, I’m not including sources for audiobooks.  That’s a topic for another page!

  • For topic-specific podcasts such as the ones related to blindness or low vision in the article above or the list below, go to their website for information about availability across devices.
  • For podcasts on a variety of subjects, use one of the software websites or apps that have gathered podcasts from a variety of sources such as TuneIn, iTunes or Stitcher Radio which are listed below.
  • For topics specific to a service such as NPR, CNN, Time Magazine, etc, go to their webpage or tablet/smartphone app.   Many of their programs can also be accessed through TuneIn, iTunes or Stitcher Radio which are listed below
  • To customize your own playlist, use what is called a podcatcher where you can search for and follow specific podcasts. You might use this if you find podcasts that you like that are not found on the same services such as TuneIn, iTunes or Stitcher Radio.  This is a little more complicated in that there are various programs to do this (I won’t be talking about that now but here’s a link to a list of podcatchers).   Some are also capable of catching video, news feeds, text, and picture.  Here’s a link to some of the best of them as defined by Tom.
Sources for podcasts related to blindness or low vision

This is NOT a list of all of them.  If you don’t find what you are looking for, I suggest you do a search using your favorite search engine with keywords such as ‘blind, low vision, podcast, audio’.

RNIB Connect Radio From the UK, they not only have podcasts but they have news and other programs/programmes, but though RNIB Connect Extra you can listen to various programs through the day. They also have a Facebook page.

Blind Living Radio is hosted by Harley Thomas with the help of special guest hosts.  They say: “We will cover topics ranging from life with a guide dog to advances in assistive technology. Nothing is off limits on Blind Living Radio.” From iTunes (see below) for Windows and Mac.

BrightFocus Foundation has a list of audio files. It is listed as Macular Degeneration: News You Can Use.  This app allows you to access the podcasts from the BrightFocus Foundation. Currently, there are 40 of them. You can play them on their website or though iTunes or through the App Store on your iPad, iPhone and iPod.

This website called Newsreel Magazine files that you can download.   The 3 hour monthly magazines consist of contributions from subscribers, often in their own voice. Formats available: instant download (mp3 file), NLS (National Library Service digital cartridge, audio CD (mp3 files), and 4-track cassette. They also have a Facebook page.

Talking Computers is a free monthly audio magazine about using computers with low vision.  Available as a download to use with iTunes through the App Store on your iPad, iPhone and iPod.

Mystic Access is packed with podcasts regarding the use of computers. Available to play from webpage or download.

Audio Internet Reading Service of Los Angeles (AIRSLA), an Internet-based radio station that broadcasts to those who have limited or no vision.  The range of topics they have is amazing, everything from periodicals to using technology to cooking.  Click here for list of categories of podcasts. You can click and listen for free to them on your computer, iPad, iPhone or iPod.  They also have a Facebook page.

Blind Planet has a variety of types of podcasts including tutorials and reviews of technology topics. Available to play from webpage or download.

Most popular sources for a variety of podcasts

TuneIn Site says that it “enables people to discover, follow and listen to what’s most important to them — from sports, to news, to music, to talk. TuneIn provides listeners access to over 100,000 real radio stations and more than four million podcasts streaming from every continent.” There are local stations as well. They have a Facebook page.

  • You can play the show directly on your desktop/laptop or download them.
  • Apps available for iPad and iPad (App Store) and Android (Google Play)
  • free and premium (subscription) options available.

Stitcher Radio for Podcasts  Here’s the description: “Listen to your favorite news, comedy, sports and talk radio shows and podcasts ON DEMAND from your iPhone or iPad. Discover the best of NPR, CNN, Fox, BBC, WSJ, Adam Carolla, Joe Rogan, Rachel Maddow, Rush Limbaugh, Fresh Air, Freakonomics, Radiolab and over 25,000 shows, podcasts and live stations. Change the way you listen to radio – on your schedule, not the schedule of traditional stations.” They have a Facebook page.

  • You can play the show directly on your desktop/laptop or download them.
  • Apps available for iPad and iPad (App Store) and Android (Google Play).

iTunes They say they have hundreds of thousands of free podcasts and that you can create your own. This link will get you to the ‘How to’ about podcasts.

  • You can play them through the iTunes software that you download onto a Windows or Mac computer.  On your iPad, iPhone or iPod, if you are keeping your version of IOS up-to-date, there is an app called Podcasts. If it’s not there, you can download it from the App Store.  To be honest, I do not know if you will be accessing the same podcasts or not.  I do know that you can sync them between your Apple devices: click here for the instructions.
Other podcasts and audio file sources

NPR This is a link to the podcasts on their website.  There are also iPad & iPhone apps to download from the App Store.  Their podcasts are also available through iTunes, TuneIn and Stitcher.

NY Times This is the link to the podcasts on their website where there are podcasts for music and book reviews.  There are iPad and iPhone apps by subscription.

CNN This is a link to the podcasts on their website.  There are also iPad & iPhone apps to download from the App Store.  Their podcasts are also available through iTunes, Tunein and Stitcher.

Time magazine This is a link to the podcasts on their website. The subjects include entertainment, politics and more!

Coming eventually: How can I keep up with my reading with e-books and audio files?

Do you have a favorite podcast or source for podcasts?  We’d love it if you’d share it.

DaVinci and Others

I saw an advertisement for the daVinci CCTV. My low vision specialist had initially suggested a daVinci but the daVinci is not portable. That would not have worked for me.

davinci-electronic-magnifier
DaVinci is a high performance desktop video magnifier (CCTV), featuring Full HD, selective text-to-speech (OCR) and a 3-in-1 camera.

davinci-woman-applying-makeup

The da Vinci has some other, cool features such as self-viewing with the camera. With up to 77x magnification that probably makes it the world’s most powerful make-up mirror.?

 

 

It also has built-in ‘OCR’. If you have no idea what that is, you are not alone. Or at least you were not alone until about half an hour ago when I looked it up.

OCR is optical character recognition. According to Wikipedia, OCR is most widely used in scanning documents. Big Business and Big Brother use it in data mining. It is also used in – wait for it – text to speech. In other words OCR is what allows a machine to read to you. In fact, creating reading devises for the visually impaired was an impetus for the creation and improvements in OCR. Cool. Nice give and take, huh?

Of course, the beginnings were pretty modest. In 1914 (Wow! Really?), a guy named Emanuel Goldberg invented a machine that ‘read’ individual letters and converted them into Morris code. Another guy, Edmund Fournier d’Albe invented a machine that ‘read’ letters and produced corresponding musical tones.

Hang in there; just a bit more on the history lesson. The little bit more is the Kurzwell Reader. That product was unveiled in 1976. If you were working in special ed, or getting ready to work in the field as I was at that time, you may remember the Kurzwell Reader. We thought it was amazing. Unfortunately it was not portable and it was not cheap.

So fast forward to 2016. The daVinci has OCR. The KNFB Reader my habilitation person wants me to have for my iPad has OCR. In fact, a lot of things have OCR in their software. When I searched for OCR in the App Store I got dozens of hits. Some of them were expensive, like the KNFB Reader for $100, but some of them were free……and some of them translate Japanese and Lithuanian, but we are not interested in that at the moment.

Stray thought: if your iPad can read and translate multiple languages, can the universal translator a la Star Trek be close behind? Live well and prosper. Look for products that say OCR. Might help.

Continue reading “DaVinci and Others”

As If By Magic

Hi! Just wanted to let you all know I hooked my iPad up to my TV. I am not a techie. I impress myself easily when something like this actually works. Many of you won’t think much of this, but I think it is cool.

Here we go! Step by step.

As we talked about before, I bought a connector to go in the iPad. It connects where the power cord connects. This is the expensive piece. It was $50. Hook that up.

Click here to go back to the page where I describe the connector & cable.

The cable hooks into the iPad connector. The end looks like a USB connector only larger. There is the same kind of hardware on both ends of the cable. What you want to have purchased is an HDMI cable. They come in different lengths. I got one that is 12 feet.

usbhdmi
Difference between USB port (left) and HDMI port (right)

Get behind your TV and look for what looks like a larger USB port. Some TV models have them on the left hand side. Some are on the back. That is your HDMI port. There are probably two or more. Notice the number of the port that you are plugged into.

Somewhere on your TV is a menu button. In my TV it is on the left hand side. The TV we use at the office for PowerPoint presentations has a menu button on the front. After you locate your menu button, set it to the same number as the HDMI port you are hooked in to. It will say HDMI 1, 2 etc on your TV screen.

Turn everything on and what is on your iPad should now be on the TV screen. Voila! Magic! What is on your TV screen is – depending on how big your TV is – several times larger than what is on the iPad screen. Ergo, it should be several times easier to see. Easier to see is a good thing.

ipadtotv

Here’s the difference between my iPad mini screen & my TV.

 

 

 

Thus endeth the lesson.

Continue reading “As If By Magic”

Beast of Burden

Some of you may recognize the title as the title of a Rolling Stones song Beast of Burden. Can’t help it, I love music!

This is going to be odds and ends. Hopefully a theme will develop. Then again, maybe not!

I just ordered a rolling cart. I took my CCTV and some work materials and a full-size iPad and my purse with several low vision toys in it across the parking lot to the other school building today. I carried them all and nearly broke my back.

I don’t know if anyone else out there has this problem, but I have acquired a lot of stuff and it is heavy!

Apparently, that is something they don’t tell you in visually impaired school: having all of these toys can turn you into a pack mule!

Another thing they don’t tell you is what to do with all the cords. In addition to all of the usual things that need to be plugged in I now have a CCTV and a reader and a Books for the Blind player and an extra tablet and the list goes on.

Not only do you have all of these electronic toys that need cords, but they need the correct cord. The smart phone wants nothing to do with the iPad charger and the iPad wants nothing to do with the reader charger, etc. You get my point? All the more fun for a disorganized, visually impaired lady.

Of course, life would be a lot nastier without my toys. I just used my iPad to look up a Talking Book to play in my cute little player. I found the new Jeffery Deaver novel available to borrow for free. That is the same novel I just saw available in hardcover only for something like $16. Not sure how many Lincoln Rhymes fans get Talking Books so I might have to wait a bit. However, it will probably be less time than I would have to wait for it to come out in paperback. I am cheap that way.

I am wondering how long you can keep these tapes. I am also wondering how much listening to audiobooks some visually impaired folks do. The order form was old-school, paper to complete with a – gasp – pen. The thing of it is, it was three columns wide and maybe 20 lines deep, front and back! If your average audio book is something like 12 hours, that is a whole lot of listening.

I just ordered one. I love to ‘read’ but I am not good at sitting that long. I am also trying to stay involved and get back to work full-time. AND I want to check out the BARD offerings. I got the acceptance very quickly but have not gotten around to setting up my account. I seem to be very busy these days – doing visually impaired stuff; ya know?

Just never realized this visually impaired business could be so demanding! Aha! A theme!?

Continue reading “Beast of Burden”

Keeping in Focus

My reader ran out of power the other evening. Since I only had a few pages to read, I grabbed my iPad mini and started to use that as a magnifier. I made a discovery: I could not keep that thing still and in focus to save my life!

I had been told – and I wrote – that the free magnifying apps could make an acceptable substitute for my $600 magnifier, but I am going to have to qualify that. When handheld, the iPad seems good only for a paragraph or so.

I asked my husband if he could do some tinkering and make a stand. I also asked Lin if she had ever seen a stand. Lin came up with two possibilities off the web. My husband says he could probably not make them any cheaper and have them be as stable.

So, disclaimer: I have never used either of these stands. These are not recommendations. I do not know the people who make these stands and I have no financial interest in them. Ditto for Lin. What I do know is my mini iPad wiggled and went out of focus when used as a reader. It needs a stand and these are available.

Check them out but caveat emptor because we only know what we saw on the internet.

That said, the first one was featured on a site called Simple Smart Skills. As of the time of the post the cost of this iPad ‘document stand’ was $166. Again, could be the same, could not be. The Simple Smart Skills site (try saying that ten times fast! Then “Sister Susie sitting on a thistle.”) also includes a link to the inventor and marketer, Kazunori Asada. That stand is one possibility.

A second option can be found on the IPAT ND assistive technology blog (IPAT stands for North Dakota Interagency Program for Assistive Technology). This is a do-it-yourself project. If you cannot do it yourself or find someone to do it, this is not the option for you. According to the website, the materials cost $90. Again, not a guarantee.

If you cannot get free labor, the price for the DIY stand may exceed the price for the first stand. Your choice. If you want to go with this option, the directions are posted on the web for free.

One more thing before I go: I noticed on the second option they have the iPad hooked into a TV. That setup was recommended to me by the Blindness and Visual Services tech person. He recommended a digital AV adaptor for the iPad and a HDMI cable to connect the iPad to the TV. I paid about $50 at Radio Shack for the adaptor and I have no idea what I paid for the cable at Walmart. It wasn’t crazy, though, because my husband picked it up and he would have commented.

Once again, no gain here from name dropping. Pretty sure they are available at most electronics stores. I just happen to know they are generally available at those two spots. After all, many of us no longer have the option of zipping from store to store on a product hunt.

Oh, P.S. I haven’t hooked that up yet so I cannot comment on how it works. That can be another post. Continue reading “Keeping in Focus”

Teacher, Teach Thyself

Do I need to even say that I was distraught? I had been struggling at work for days.   I had been lately having panic attacks. Now I knew why but knowing why had not really helped.

One thing I knew was that I had to take a leave of absence from my employment. Tearfully, I sat in the hallway at the ophthalmologist’s office and called my employers. It was not fair to my clients to do a poor job. It was not me to do a poor job. The only option was to hang it up for a while.

It was not me to do a poor job. I had to hang it up for a while.

That weekend I continued with the panic attacks in earnest. I was waking up hyperventilating with my pulse racing. I felt as if I had a rock in the pit of my stomach. This is what dread feels like.

For the past two years, I have had the opportunity to teach the educational components of Dialectical Behavioral Therapy (DBT). Just by chance, the unit I was teaching was Emotional Regulation. If anyone needed emotional regulation at that time it was me. Teacher, teach thyself.

I will go into some of the tenets and strategies more in-depth later on in my postings. Suffice it to say now, I needed to use the first of the PLEASE strategies (PLEASE is an acronym that I’ll explain below) for dealing with Emotional Regulation—the strategy is taking care of physical illness (that’s the P).

The P in PLEASE stands for taking care of physical illness.

I was in my general practitioner’s office that Monday morning. I was totally worked up. I have been up with panic attacks at least three times the night before and I was using over-the-counter sleep medication to get any rest at all. Even worse, my blood pressure was up to 182/ 81. I think this was my personal best!

After listening to my tale of woe – about going blind, taking a leave from work, not being able to drive, and, on top of everything, having my mother-in-law in intensive care – my general practitioner prescribed psychotropic medication to help me deal with my anxiety.

DBT stresses that you have to take care of physical illness in order to deal with emotional distress. I am not a big believer in medication but having a stroke was not going to help the situation.

I accepted that I needed the prescribed medication to help control my panic.

The S in PLEASE is sleep. I wasn’t doing a lot of that but I needed to. I had never given it a lot of thought but, take it from me, losing your vision is exhausting. The emotional stress of losing your vision is exhausting.  That is one thing but just trying to SEE is another. It has been taking me three and four times as long to do basic tasks like reading my mail. I have a reputation for being a high-energy-and-always-on the-go woman. It amazes me that in the last few weeks I have started taking naps.

The S in PLEASE stands for sleep.

The first E in PLEASE is proper eating. One does not eat well when she is in crisis. In fight or flight mode, the digestive process is shut down so the blood can go to the limbs. Before I started on my medication, I had no appetite and when I did eat, it sat undigested.

The problems with being in fight or flight mode were two: first this was not some short-term problem. This crisis was going to last for a while. And two, what was I going to fight? Where was I going to flee? Better to interrupt the process so I could get proper nutrition. After all, every army marches on its stomach and this was going to be a protracted campaign.

The E in PLEASE stands for proper eating.

For you curious sorts who wonder what the A and the second E are (the L is part of the word Physical; I did not forget it), I will inform you. The A is to avoid mood- and mind-altering drugs. That has never been one of my problems, but it might be a problem for some of you. Remember that drugs and alcohol work in the short run but in the long run, your problems are still there and often worse. Escaping with drugs and alcohol is not going to allow you to learn skills to deal with your problems and they certainly will do nothing for your Macular Degeneration. End of lecture.

The A in PLEASE is for avoiding mood- and mind-altering drugs. Not one of my problems but I’m informing you of it.

The E is one of my favorite things in the whole, wide world…exercise! A little autobiographical note here. I have, in at least one aspect, lived my life backward. I was an intellectual in high school and college. Never did any physical exercise that I was not absolutely obliged to do. That changed when I was in my mid-20s and discovered STRESS. The one thing that helped to relax me and let me sleep was exercise and I was born again. It is true there is no greater zealot than a convert. I will witness to you any time you like. I may also witness to you when you don’t like.

The E in PLEASE is for exercise which is one of my favorite things in the whole, wide world.

So, be that as it may, this time of the year, I generally take Zumba, hip hop, yoga and walk. Exercise is an amazing stress reliever and great for calming crazy emotions when you are in crisis. Even though my vision had gone to serious crap, I continued my classes. I have had to. Friends and my exercise have been my lifelines.

When some people hear that I am legally blind in one eye and nearly legally blind in the other, they assume I cannot dance anymore. Not the case at all. Macular Degeneration affects your central vision. If I concentrate on looking at something off-center of the instructor, I can see the moves with my peripheral vision just fine.

Even though my vision had gone to crap, I continued my exercise classes.

People also think I am not able to navigate on a walk. That’s not true either. Keeping my head up and focusing on a spot a bit beyond where I am walking, I can see what is at my feet. The peripheral vision is still there.

When I walk, I can use peripheral vision.

Then there is yoga. Sorry all of you exercise haters, but totally blind people do yoga. ‘My’ yogini is hands-on and will physically correct your alignment, etc. I have worked with another yogini who is about 100 pounds and will literally climb on you! Yoga is great for flexibility, balance, strength and even endurance and can be done by people of all ages. Yeah for yoga!

Totally blind people do yoga. Yeah for yoga!

So, trying to keep myself from being a screaming, crying basket case, I practiced what I was preaching and used the PLEASE skills from Marsha Linehan’s Dialectic Behavioral Therapy.

I also used ABC and Master from DBT. A is accumulate positives; I got out there and had fun. I walked to the park with my yoga instructor and her two daughters. I contacted a friend and went to a blues concert. These may have been just pleasant interludes that don’t do anything to help my eyes but they helped my soul.

The A in ABC means accumulate positives. I got out there and had fun.

B is for building mastery. My job is very visually demanding. I never realized how often I needed to use my eyes. My vision was there and taken for granted. Yesterday I tried to do something I have done thousands of times over the last 38 years. It was a debacle. I cried whatever is left of my eyes out. Tried again today and it was better.

Also today, I started to use Siri on my iPad for my searches. She found something I was wondering about. Minor triumphs matter and I am trying to celebrate them.

The B in ABC means build mastery.  I started to use Siri for my searches.

The C is for cope ahead. Basically, this is a positive imagery technique. What do I imagine? I see me lecturing on Macular Degeneration to Lion’s Clubs and other civic organizations. This is, of course, after I have become the most successful lab rat in the history of Wills Eye Hospital and have written a website that is turned into a best seller for people who are suffering from AMD. There IS life after your macula does a mass extinction worthy of the Jurassic period or whenever the dinosaurs ceased to be.

The C in ABC is for cope ahead which is a positive imagery technique. I imagine myself the most successful lab rat in the history of Wills Eye Hospital.

Do these strategies always work? Hell no. I want to be back at work. I want to drive. I want to read a paperback mystery cover-to-cover in a weekend like I used to. Screaming and crying, frustration and disgust have been part of my life recently and I suspect they will continue to visit. The skills may not be 100% effective but I will take all of the help I can get at this point.

Do these always work? Hell no, but I will take all the help I can get at this point.

Written February 2016. Reviewed September 2018.

Continue reading “Teacher, Teach Thyself”

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