Category: Highlight

Our Facebook Group

May 12, 2016

I’m pleased to announce that I’ve set up a Facebook group that will be connected to our website.  The purpose of the group is to allow us to talk about topics of importance to us, ask questions, and share information.

I’ve found 48 Facebook pages/groups related to blindness, low-vision and AMD.  These include most of the big AMD organizations, and they post regularly about what’s new in research, treatments, coping skills, etc.  In addition to being the administrator of the group, I’ll be checking these AMD sources regularly & I’ll share the best of their posts with our group.

Sue will not be in the group.  She’s not on Facebook and isn’t interested in joining because her time is limited, but I’ll be able to pass information from her & to her.

You must have a personal Facebook page to join the group.  You can still follow the website by email, and you will still get the email that I send out announcing a new page from Sue and a new blog post from me. I will share many of the Facebook ‘goodies’ we find with the email followers as I have time.  The biggest advantage with Facebook, in my opinion, is that we can interact with each other. Several people have told me that they don’t know anyone else with AMD & that they feel very isolated.

The name of the Facebook group is:

Our Macular Degeneration Journey

I recommend that the first time you go to the group, use this link because there are several matches to the group name & it may be hard to find initially:

http://www.facebook.com/groups/mymacularjounal/

I’ve made it a closed group which means anyone can find it, but you need to ask to join and wait until I approve you.  I know that privacy is a big concern for us all. Unfortunately, there’s no way that I can prevent others from seeing your name listed as a member in the group. If your personal page security is set properly, they can’t go to your page or see all of your info.

Part of my responsibility as a group administrator is to protect our privacy, prevent people from posting advertisements, and to make sure each one of us is treated with respect and dignity.  We can agree to disagree, that’s fine.  We just need to be polite about it.

You can share this Facebook group name with others.   Tell them that if I don’t approve them in a timely manner to let you know.  I’ll need their Facebook name.  You can email me, or they can email me directly (please tell them to mention you are a follower of the website).  I will also be publishing the Facebook group name on the website which means that a person doesn’t have to be an email follower to join the group.

My email address is
light2sight5153@gmail.com

See you there!

BACK TO THE WELCOME PAGE

Sue Quixote

While I was riding home from school with my friend, my cell phone rang. It was my counselor from Blindness and Visual Services. More papers to sign!!!

My friend asked what was up and I told her I thought it was paperwork to get me a mobility specialist. My friend knows half of the reason I want mobility training is to get my bike across two main roads. Not hiding it. Being able to cross a road to go to WORK as Blindness and Visual Services is thinking is a secondary benefit.

Anyway, I then started talking about how I might even end up with a white cane! I had read articles that said often a white cane is for the benefit of everyone else. It signals them to watch out for you.

Half a second later my friend and I both got a fit of the giggles! We were imagining me trying to ride my bike across the highway all the while brandishing my white cane!

A ‘blind’ knight on her trusty steed, Schwinn, waving her white sword. I suspect that would be a traffic stopper!

We spun more and more unlikely scenarios from there. (Believe it or not, there were some.) The ride home was accomplished with a lot of giggling.

I know some people may find that offensive. Making fun of the poor, visually impaired lady. Well, I am the poor, visually impaired lady and sometimes I deserve to be laughed at. Sometimes I WANT to be laughed at, or ast least laughed with.

I have already said I have lived a charmed life. Things have gone especially well. Granted this current little adventure is not the least bit charming, but you will have that now and again. But anyway, one of the very positive things about my charmed life is I am capable of making an ass out of myself….and it happens regularly. It has taught me a bit more life wisdom: try not to take yourself too seriously and life is the funniest thing that will ever happen to you. The corollary to that second one is disasters make the best stories but that is another post.

My point is laughter is good for you. It is even good for you if you have to fake it. In DBT we have the concept of ‘half smile’. The muscles and nerves in your face are in a feedback loop together. Feel good and you smile. Smile and you feel good. It really does work.

If nothing else, think about the confusion you will cause when people wonder what you are smiling about!

Continue reading “Sue Quixote”

It’s a Small World

My husband and I are planning to go on a cruise this month. We get along well but have very different interests in entertainment.  To avoid tears (mine, not his. I tend to become emotional when I am being thwarted or bored) we long ago developed the habit of going our separate ways when it comes to vacation activities. We both get to do what we want to do and nobody melts down. And a good time was had by all.

When we sat down to talk about shore excursions this morning our different interests really became apparent again. I had been hoping there would be a few things that interested us both. I don’t know what I was thinking!

Like I have said before, I am not (usually) a danger to myself or others. I just cannot see faces. The blurs that are members of my tour group are going to look pretty much like the blurs from every other tour group. I hate to admit it, but I could easily wander off.

I tried to call the cruise company but no one is there on Sunday. I could just sign up for the excursions I want but just presenting myself the day of doesn’t seem like a viable option.

Guess what! You are in charge of ME! I will need to wait and talk to a real person tomorrow.

Since this will be my first international adventure as a visually impaired traveler, I figured I should do a little research. The Discovery Eye Foundation has a nice, short article entitled What Good Is Sitting Alone In Your Room? ( All together now! “Come hear the music play!”….have you ever wondered how much of your brain is nothing but a giant repository for old song lyrics?  But I digress….again). The article stresses planning, planning, planning. It also suggests making a list of everything you need and taking two of each! This person obviously has never seen me packing for a trip. Any more stuff and I will need to hire a Sherpa, several of them. I will pass on that idea but it might be helpful for you.

Asking for help is a tried and true tactic also mentioned. One more time, people are great and most of them will help.

Quick aside: the first time I was in Bavaria and the surrounding area there was a woman with blindness on the trip. She and her friend ended up hanging around with my friend and me. It made for some interesting times. This woman had no clue how close she came to taking a swim in the Grand Canal in Venice and I think she was only one of us who truly enjoyed the precipitous slide we had down the bobsled run in Innsbruck. (That sucker was steep!) All told, helping her took nothing from our enjoyment of the trip and it even added a few positives.

Back on track!

The article also pointed out that there seems to be a market for travel for the disabled, even adventure travel. The article referred to Disabledtravelers.com  as well as sites called Traveleyes and Mind’s Eye Travel.

Looking at the Mind’s Eye Travel site I was brought up short. Unless there are two, visually impaired women with the same name, I went to high school with that company’s owner!

Small world. Get out there and explore it. I am going to.

Continue reading “It’s a Small World”

Buddy System

I walked into the “little boss’” office yesterday. There was one of my colleagues there and they were talking about me.

In spite of the opinions you may have formed about me thus far, it was good!

My colleague has glaucoma and he is also slowly going blind. Only his is a loss of peripheral vision, not central vision. It turns out all my incessant chatter and complaining about ‘my’ clinical trial had inspired him! My colleague had gone to a day long presentation on glaucoma at Wills. He had been impressed by the presentation and had signed up for a study.

A variety of emotions about this on my part. A little fear he would not benefit from the study and it would be my fault. (I am in control of the universe; you know. And here you thought it was you! ?). A little concern he did not know a few details I consider important. Phase? My colleague did not know clinical trials even had phases! Other details? A little short there. My colleague is going to get me the clinical trial number so I can look it up.

But mostly the emotion was pride. I was proud of him for taking the step. Not only to try to save his own vision but also to try to save the vision of thousands of others.

I was also proud of myself for getting out the information. My colleague would never have entertained the idea of a clinical trial if he had not heard me talk about it first.

I talked about meaning before. Remember Viktor Frankl?  If you have a ‘why’ you can survive any ‘how’. Having a purpose attached to pain, any pain, makes it more tolerable. And that word really is pain, not suffering.

Suffering comes when you resist pain. Having meaning makes suffering less likely.

Anyway, my AMD is having a positive effect in the world. One person at a time. That makes me proud. It also lessens the pain. Attaching meaning to a bad experience does that.

It is kinda cool to now have a fellow future lab rat. We can get t-shirts! Future Lab Rats of America! It could be a club. Wow.

Not sure about timelines but it is possible my colleague can also be my ride to Philly a few times. Our boss was not too sure that would be a good idea. She is half afraid to have two visually impaired staff members venture off into the world together. I am not so sure it would be that bad an idea.

He is peripherally blind and I am centrally blind. Put together we just might be able to have a full field of vision! The buddy system applied to visual impairment……hmmmmm. Very interesting.??

Continue reading “Buddy System”

What Is Normal?

It is two in the morning and I am wide awake. Did something sort of dumb. I slept poorly last night so when I got home from work I fell asleep at 7….and woke up at 1 am. Crap.

Anyway, greetings from the middle of the night! Not necessarily a bad night. I have been reflecting and I am pretty pleased overall. I got four full days in at work this week. Next week is filling up nicely and looks as if it will be my first 5-day work week since February. Sort of scary but also exciting. After all, a five-day work week is ‘normal’.

Other things are getting back to ‘normal’. Some ways I am not the visually impaired lady and some ways I am totally the visually impaired lady.

About as clear as mud, huh? In some ways I am not the visually impaired lady because people are forgetting. In the past week or so people have been shoving things under my nose and saying “look at this!” Same as when I was fully sighted. Same as they would do with any other colleague. They look a little abashed when I say something like “I would love to. Let me get my reader”. They really had forgotten.

In some ways I am not the visually impaired lady because people are forgetting.

A nice little side benefit to their having forgotten? It means my work is good and I have been reassured without needing to come out and ask. People, including my boss, would not be forgetting I now have a handicap if my handicap was having a significant effect on my work.

I have totally become the visually impaired lady because the blind cracks have started! I am back to being harassed and they now have new ammunition. “I don’t know. You try to figure it out. We’ll let the blind lead the blind! Ha!” OMG.

I have totally become the visually impaired lady because the blind cracks have started!

I just remember love comes in all sorts of crazy forms. These forms include bad blind jokes.

Of course some things are not ironed out yet. I need to get on the scale and see what is happening with my weight. The first couple of months I was on the Macular Degeneration Diet. I lost six pounds because I was not able to drive myself to engage in some of my bad habits. You know, take out Chinese food, double dips of mint chocolate chip ice cream on a cone, etc.

At school there is a cafeteria and two places that will deliver if the ‘mystery meat’ from the cafeteria does not look edible. No such options at the office. Today I took a can of soup but that probably was not enough for an 8 hour day. My husband, who seems to think of food every five minutes, showed up to take me home with pizza box in hand. Food!

Yep. Doing OK. Being loved….sometimes it’s blind jokes and sometimes it’s grocery store cheese pizza.

Love comes in all sorts of crazy forms.

Continue reading “What Is Normal?”

Friends I Haven’t Met Yet

I have always been a friendly soul but this is getting ridiculous! Today I thought the car pulling into the parking lot at my friend’s office was my husband come to pick me up. I waved and smiled. The driver waved and smiled (I think). Then he -she?- backed out of the lot and headed back in the direction he had come! Oooops.

This has been happening more and more. The other week I thought it was a dear friend standing on the street in front of a restaurant. I was getting ready to give her a hug before it dawned upon me she was a total stranger!

People address me and do not give me a clue who they are. I have several times walked up to within two feet of someone and said something profound like “oh, hello. It’s you.”

We are going on a cruise this summer and I would like to do a few shore excursions. I have no idea how this is going to work. I like to wander around and explore but if i get more than a few feet away from people I have no idea who they are. Makes it sort of hard to stay with the group!

I might get on the wrong ship and go to South America or someplace. I might need a GPS tracker device implanted to get me home. Maybe a tag. If found please return to….

I have been getting better at identifying ‘faceless’ people at school and at the gym.  Some of these people are pleased  I have been able to recognize them. I keep it to myself that it generally has to do with something like a pronounced limp or oversized ‘love handles’. The more gross – and I use that word meaning the opposite of fine although you can think what you like – details of a person’s appearance have recently become more important to me.

I really don’t have an answer for this lack of face recognition faux pas waiting to happen nonsense. I just have to believe people are more tolerant of pleasant clueless folks than they are of unpleasant clueless folks and just keep trying to be nice.

And who knows, the next stranger I try to hug might possibly become a friend.

Continue reading “Friends I Haven’t Met Yet”

Better Safe Than Sorry

A couple of years ago my good friend, the accountant, got run down on her bike. The person who ran her down was 90 years old. He never saw her.

Fortunately, my friend has recovered. She is still trying to get compensation for medical bills and lost wages, but it could have been much worse.

Last week there was a similar incident. Another bicycle racer and a friend of my friend was run down by an 89 year old. She was driving on the berm and never saw him. The only reason she even stopped was because her tire went flat.

So here I am at 62 not driving and hating it. It is sort of vexing these old people are still driving and I am not.  But do I truly want to be on the road? Yes and no.

I would love to have the independence of driving. However, my Macular Degeneration Partnership newsletter just came today and the article on driving hit pretty close to home. The article quotes a book titled Driving With Confidence, A Practical Guide to Driving With Low Vision. There are six questions to ask yourself and you were only ‘allowed’ one failure. I had two.   [Click here to go to that article & answer those questions].

I have to ‘decipher’ road signs. My vision is not good enough for me to catch them on the fly and be able to respond. Also, other cars just pop into my field of vision. I told my friend who brings me home from school it is like cars coming towards us in the opposing lane are emerging from a fog bank. They startle me. Sad but true, I flunked the quiz.

As much as I hate not driving, I think I would probably hate a charge of vehicular homicide a bit more. That means I stay off the roads.

Stay off the roads for now but have hope for the future that is. My vision is sitting right on the line. Technically I have not lost my license. My doctors, my husband and I all agree the prudent thing to do is not to drive. I am most definitely respecting that for now. Should the clinical trial improve my sight there is the outside chance I  may be able to do a little driving around town in the future. This would be especially true if they continue to make advances towards safer, ‘self driving’ cars.

Many people don’t like the thought of a machine being in control but if it meant I could drive and be assured I could not run into anything, I would be all for it!

Of course, I would have to take an older drivers’ course before I got back in the game. AARP and AAA both gave programs. Some private rehabilitation companies have them as well.

Maybe with these developments I can have a more independent future without screwing up the future for someone else.

Some people in the US can drive if they meet certain criteria, have specialized equipment & instruction.  Click here to read more.

Continue reading “Better Safe Than Sorry”

Highlight: What is Advanced Macular Degeneration?

About 10 years ago, my elderly father was diagnosed with dry AMD and then later we were told it was ‘advanced’ and that he had ‘geographic atrophy’.  At the time, I didn’t understand what that was.

Here’s an excellent article about what those terms really mean.  It’s on the great website WebRN: Macular Degeneration.  If you haven’t looked at it, I recommend that you do after you read this article.

Advanced AMD & Geographic Atrophy

Highlight: What do I do if I get a diagnosis of AMD?

Getting a diagnosis of AMD can be a shock.  We’ve found that many eye professionals don’t really do a good job of answering a patient’s questions. Also, you may not be able to ask questions right away.  Many people in this situation turn to the Internet to do their own research like we did.

The Prevent Blindness organization has a system where you get a customized guide with resources, tips and steps that you can take to you be proactive about protecting your vision.  All you have to do is to answer questions that you are given.  You can print the guide and you can view it on a computer, table, smartphone.  You can also go back and update your answers to get an updated guide.

Click here to go to Guide Me.

Plans B through G

When my nephews were young we would go on adventures. There were times our adventures did not go as planned. I would give them a bit of life philosophy: the art of life is often in plan B.

I am starting to understand this visually impaired nonsense is an ‘adventure’ and I need a plan B. I probably need several plan B’s ……probably a few plan C’s. Maybe even a D or two. And these plans should be for each and every situation in which I am depending on others for support.

I have been really fortunate to get a wide amount of coverage for my needs. I have one person to take me home from work, one for Monday evening exercise class, one for my Thursday activity, etc. The problem – and it is not really a problem, it is reality – is that every one of these people has a life.

They have offered to help me, not be my slaves. When you are dependent upon others, their sick kids become your problems.

So now that I have width, I am going for depth. Monday night ride’s kid has a sporting event so I called my backup ride. My ride home from work has a dentist appointment? I need to go to my backup person. People volunteer – foolish people – and I take their names and numbers with the explanation I have a regular ride but I would like to keep them in reserve. May I call you when I am stuck? People are generally fine with that.

People giving me rides are generally not going too far out of their ways. It might be a mile or two at most for them to swing around and pick me up. I try to not ask people who live too far and go for another option if I realize they live all the way across town.

I hate to ask people because I always feel as if I am putting someone out. Being an inconvenience is not a good thing. However, multiple people have assured me most of that thought is in my head, not their heads. They would not volunteer if it were a problem.

Would I do the same if the shoe were on the other foot? Maybe not, but I like to think so.

Basic courtesy is a must. I try to never have people need to wait for me. If that means stopping what needs to be done and twiddling my thumbs for five minutes, so be it. I don’t make messes in their cars or ask for extra stops. I gave out $3 chocolate bunnies at Easter. Thank you.

I also have been trying to be more – gasp – flexible. If my ride home from work has a late meeting, I plan to stay, too. If what she needs to do and I need to do conflict, I either try a backup ride or I change my plans. She is already accommodating me. She does not need to do it any more.

I am anticipating the day that none of my rides can take me. I would like to think I will be able to put on my big girl panties and cope. Probably will pout. I know me. I pout. Whine a bit. But then I need to do something more positive and productive. That might be plan G.

Continue reading “Plans B through G”

Winter is Coming

Summer is coming and in anticipation I am…..pissed off!

OK. So I  am not always  my own best client. Sometimes I just react.

Why am I peeved? Because summer has always been full of opportunities and I am discovering that list of choices is much smaller now.

People are telling  me I am NOT to try to ride my bike. The bike trail is on the other side of two major roads. I will get myself killed. Get someone to drive me over. So instead of a spontaneous little jaunt on a lovely summer’s day, my bike ride will be an event. Make arrangements, wait, load the bike, need to be back at a certain time, reload the bike. Really?!

The ice cream stand is even on the other side of the one major road. Rather than just scoot over for a large, soft-serve twist cone whenever I like, that is going to be an event this summer, too.

I think I said this before in another post, but I am saying it again: this visual impairment business is damn inconvenient!

Almost everything I like to do has become impossible or majorly complicated. Or, caring folks are scared to death when I do it.

What got me going this morning was thinking about the river. I kayak and it is getting to be the season. How to do this? I still have enough sight that I will be fine on the river once I get there. I would not be a problem in and of myself. Maybe, just to be on the safe side, I should join a group. If there is the safety of a group, maybe I should ask Lara (who is pretty much totally blind).

Great sentiment but even if we rent a tandem kayak, the group was hesitant. We would have to bring our own support people. It was never said, but liability would be a concern.

So now I am not only peeved for myself but I am peeved for Lara. Don’t encourage us to go kayaking because something may happen to the blind lady. We cannot have a nice day on the river because of someone else’s fears. Again, really?

OK. Some things are out of the question. Me driving would be dangerous to others, for example. But some things are not out of the question. When I googled blind kayaking I found two guys who had paddled through the Grand Canyon. Both blind. If they can do that, this river should be a piece of cake.

Maybe these things can be done. They just have to be done differently. I wonder how open-minded my mobility person is going to be. I wonder if he likes to ski. After all, winter will be coming. ?
Continue reading “Winter is Coming”

News: CVS faces lawsuit for claim about a store-brand eye product

April 10, 2016

For those who have intermediate and advanced AMD, doctors recommend the nutritional supplement that came through 2 NIH research studies: AREDS & AREDS2.  If you haven’t already done so, please read our post What about those eye vitamins?

The only product that has all the nutrients from the AREDS2 study is made by Bausch + Lomb PreserVision. CVS put their store brand supplement next to this one and labeled it “comparable to ongoing study formula in AREDS2.” A 91-year-old woman was diagnosed with AMD and the doctor prescribed the PreserVision product but because of the label, she switched to the CVS brand because it was half the price.

It is NOT comparable.  To read the whole story, click here.

 

Highlight: Where can I find online courses in the field of blindness & low vision?

There’s a great resource through the American Foundation for the Blind. It’s their eLearning Center for professionals in the field.

Some of the courses are free such as A Brief Overview of Unified English Braille, Age-Related Eye Conditions (AMD, cataracts, glaucoma), Job Seekers Toolkit and more.  Click here for the list of free courses.

Also available are Continuing Education (CE) credits for professionals such as

  • Educators
  • Rehabilitation and occupational therapists
  • Orientation anClick hered mobility specialists
  • Rehabilitation counselors

Click here to find out which professional organizations give CEs.

You can even get 1 CE for reading the Journal of Visual Impairment & Blindness.  Click here to find out more.

 

Knowledge Is Power

I talked to a human being today. Even better, he was a helpful human being. His name is Mike and he works for Houghton-Mifflin-Harcourt (HMH), people who may have just become my favorite publishers. If I didn’t think Mike was somewhere between a son and a grandson in age, I would be in love.

Mike sent me an email about getting the materials I need in digital form. He put his first and last names on the email. He even gave me a number to call and when I called it, he answered the phone himself! Mike even helped me complete one of those pesky request forms and promised to help expedite my request. Like I said, HMH may now be my favorite publishing house.

Mike also said – be still my heart – HMH was going to copy the materials for me and provide them without charge. He said mine was a ‘Chafee request’. Even though they are, of course, wonderful people at HMH, the Chafee Amendment together with the Americans with Disabilities Act (ADA) say they have to accommodate me.

Let’s start here. So what is the Chafee Amendment? Passed in 1996, the Chafee Amendment says “it is not an infringement of copyright for an authorized entity to reproduce or distribute copies or phonorecords of a previously published, nondramatic literary work if such copies or phonorecords are reproduced or distributed in specialized formats exclusively for use by the blind or other persons with disabilities.”

It has been decided in the courts that this amendment to the copyright laws in concert with the Americans with Disabilities Act allows libraries and other ‘authorized entities’ to make works in an accessible format available to qualifying patrons. If the ‘authorized entity’, a term that is still in dispute about its exact meaning, makes an alternate form copy of any published work for a disabled person, that entity should not run afoul of the copyright laws.

The ADA says that the alternative form is essentially guaranteed to the disabled consumer under the law.

Of course, there are certain stipulations, such as your having to have purchased the print copy of the materials and the copies being made must be accessible form copies for the exclusive use of someone with a documented disability. But within the limits of those stipulations, publishing houses would have a hard time suing for copyright infringement.

So how does the Chafee Amendment to the copyright laws relate to ADA? In 2010 the Effective Communication laws were passed. These are actually amendments to the Americans with Disabilities Act and relate to accessibility of all forms of communication. This is whether or not the communication is with a government agency, business or nonprofit agency serving the public.

Effective communication means that communication with people who have communication disabilities – including trouble reading standard print – is to be as effective as communication with persons who do not have disabilities. Covered entities – I think the US government loves that word ‘entities’ – such as lawyers, doctors, and all other sorts of businesses and service providers must provide auxiliary aids and services to communicate with individuals who have communication disabilities.

For me, this means I am pretty much guaranteed by law to be given digital copies of the materials I have already purchased in standard print form.

Granted, I have been made to jump through some hoops, but in the end, alternate form accessible materials are my right as a U.S. citizen.

For you, it may mean getting a textbook in an accessible form. Or a contract or your medical records. All of these must be made available to you in a form you are able to access and understand. Information cannot be denied you simply because you cannot read standard text.

And considering that – in the words of Scholastic Rock – knowledge is power, being able to access the information you are entitled to is a very good thing.

Written April 2016.  Reviewed September 2018.

Continue reading “Knowledge Is Power”

Highlight: How can we protect our eyes indoors?

I accidentally published this but it’s not done yet!
 ** under construction **

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Lighting

Artificial lighting is used to simulate the light of the sun indoors.  We need proper lighting not only for vision tasks but for safety.  When the macula is damaged by AMD, not only do we lose our visual acuity but also our ability to process glare and contrast. The range of light made available varies quite a bit, each type with its own benefits and risks (sometimes these are based on scientific research, sometimes opinion & experience). The brightness & type of light is important.  These are the most common types of lighting you can get –  there are others that you’ll see in the links provided below:

  • Full spectrum: You get the entire spectrum just like you do with the sun (infrared, visible, non-visible). This type of lighting is used to grow plants indoors (grow lights) but also to sew and do crafts. It enhances color & contrast but it includes the harmful UVA, UVB and blue light.
  • Incandescent: the most common form of light bulb which provides a yellower, more direct light that is good for close work, like sewing or reading.  There is some blue light emitted.
  • Halogen: produces the brightest and whitest light. For some people with low vision, it can enhance contrast between print and background, but for others they generate too much glare. It also generates a lot of heat.
  • LED (Liquid Electrical Display): The newest form of lighting.  The quality of light provided is excellent, the color of the light is not damaging to the eyes (has no UV rays), the bulbs are long-lasting (eg, with 8 hours a day, an LED light could last 14 years) and there are no hot lamp surfaces or bulbs. They do, however, emit blue light.  For that reason, some people do not use them.  
  • Fluorescent : casts blue-white light evenly and without shadows over a wide area. Because it generates a lot of light without using a lot of electricity, it is the type of lighting most often used in public places, such as supermarkets or offices. But it can create increased glare.

Here are some links to helpful sources regarding indoor lighting.

Lens Coatings/screen protectors to filter out harmful rays

Not only do we have to protect our eyes outdoors but also indoors.   We’ve talked about the type of light that can be made available but there are two more considerations:

  • what if you can’t control the lighting in your environment, eg, you work where there are flourescent lighting that causes glare or full spectrum light which emits blue light?
  • We are getting harmful blue light from our computers, tablets, cell phones, TVs, etc.

glasses

https://www.lowbluelights.com/index.asp

Not all amber lens filter blue light

http://www.cocoonseyewear.com/sunwear/category.php?id=53

https://www.paleohacks.com/sleep/will-plain-red-or-orange-lenses-block-blue-light-for-sleep-17104

 

 

 

 

Is blue light keeping you up at night? We ask the experts

AM and PM lights for sleep/wake

http://pressroom.gelighting.com/news/ge-redefines-lighting-with-ge-alignTM-lighting-aiding-natural-sleep-cycle#.VvlH6OIrLIU

 

http://www.drweil.com/drw/u/QAA401620/Do-Orange-Glasses-Block-Blue-Light.html

 

 

Highlight: Consistent checkups are important to eye health

March 25, 2016

This is a great article that points out that it is important to have your eyes checked regularly and that the timing depends on what’s going on with your eyes.  The article makes 2 especially important points about a diagnosis of AMD:

  •  Even though there is no cure yet for AMD,  it’s important to catch it early since there are some ways to slow down the disease.
  • If a person is diagnosed with AMD, it’s a good idea for them to alert their children about it since there is a hereditary component to it.

Click here to read the rest of the article

Welcome!

June 2023 There’s an announcement that since Sue has not written any new journal pages for some time, the site has been archived until we can decide if the work necessary to make sure all information is accurate and up-to-date can be made. In the meantime, you’ll get some pages ‘not found’ or ‘private’ until that decision has been made. The emphasis for several years has been on the Facebook group.

You are here to follow the journey & misadventures of a woman named Sue who became visually impaired with Age-Related Macular Degeneration (AMD or ARMD) seemingly overnight.   Join in the tears and laughter. Join in the discussion. Learn more about Age-Related Macular Degeneration. Find resources for your own journey or that of someone you know.

We’re going on a bear hunt….can’t go over it, can’t go under it, got to go through it.

Sue is a psychologist trained in Dialectic Behavior Therapy (DBT) and is using it to help her cope with this vision loss. Her trusted and invaluable friends bring computer, research and occupational therapy skills to this endeavor. Yeah team! We hope you benefit from the fruits of our labors.

We are not offering free psychological therapy.  We are not medical people.   Please read the disclaimer.

This website is divided into 4 parts:

  1. If you have just been diagnosed or if you are beginning your research, here’s a place to start in I Have Macular Degeneration…Now What?
  2. Sue’s journal pages which are like chapters in a book
  3. Highlights & News which are basically blog posts
  4. Links to helpful resources (still under construction)

For those of you who aren’t familiar with websites or blogs like this, to ensure that you will be notified when information is added to the website, you must subscribe by email.  On a laptop & most tablets, you’ll find the place where you can do this in the right-hand column.  On a smart phone, you will find it below the content for the page that you are looking at.

We are still learning, we don’t know everything about this challenging disease.

Courses Coming Soon!

Thanks!

Thanks to Lesley B., Sally R., Dave M. and Gerry M. for going through the website looking for links that didn’t work, things that didn’t read well and typos.  We couldn’t have done it without you.

 

Blog Posts

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We will be regularly adding new information to the Highlights/News section as well as Sue’s Journal pages.  To make sure you are notified when that happens, please go to ‘subscribe by email’.  On laptops & most tablets, you will find out how to do that in the right-hand column.  On a smart phone, it will be after the content.

 

 

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