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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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

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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::

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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”

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A Day in the Life

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 habilitation person from 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”

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