macular degeneration, macular, diagnosis Tips for living with low vision – My Macular Degeneration Journey/Journal

Sue’s Toolbox Update 2023

Sue wrote most of this, of course. My comments are in [ ]. When you see any text that is a different color or underlined (varies by the device you’re using), you can choose it and go to a page with more information. It’s called a link.


Hi! Lin asked me to update my “toolbox” page. It has been three years so it might not be a bad idea. [Sue & some others call me by my ‘childhood name’ Lin, but I’m also Linda ::grin::]

Lighting!

I stand by most of what I said in 2020. Good lighting is essential. ​I was told to get LED lights when I started this journey. I have Ott brand lights and they work well. They also last forever. [You can often find the Ott lights on sale at the JOANN store.] The bulb in the light next to the bed has been going strong for seven years. The LED lighting is cool to the touch and reduces glare. If you have vision issues, you know how much “fun” glare can be! Not! Reducing glare is a real plus in lighting.

Magnify, Magnify, Magnify!

When you have advanced, age-related macular degeneration there are a few, simple rules: magnify, magnify, magnify!

I remember walking home from elementary school to find my grandfather trying to read the newspaper with a handheld magnifying glass. Same thing with my father several decades later. However, these days, it is not your father’s magnification any longer!

My workhorse is my closed-circuit TV magnifier (CCTV; also called video magnifier). They are expensive, but for me, they are indispensable. I take notes, pay bills, sort out my taxes, everything on that machine.

My CCTV is a portable model from Low Vision International. It has a sliding tray and a camera I can flip to view presentations and people across the room. I got the model you can hook up to a computer, but I have not used that feature yet. [Where to find these devices and other low vision aids? Check my section at the end ‘Finding Help to Create YOUR Toolbox!’]

Computer

And speaking of computers, my iMac is also an essential tool in my toolbox. I learned on a Mac, so that is my platform of choice. While Macs are relatively expensive compared to other brands on the market, they also come with a magnification feature built in. [Great resource for learning about using a Mac from Perkins School for the Blind ‘Getting Started on the Mac for Users with Low Vision.’]

This is as opposed to PCs that need you to add a magnification app. My magnification app for a PC I use is ZoomText. ZoomText not only magnifies, it also gives you voice over. Voice over is a “drive-me-crazy” feature that reads what you have put the cursor on and what you are typing. Right now voice over is enough to drive me insane, but it may be very helpful in the future. Either way, ZoomText is not free but is affordable. [Her reference to ‘voice over’ is not the same as Apple’s VoiceOver feature.]

iPad

I am typing this on my iPad. I purchase the BIG iPad with a 12.9 inch screen and I love it. My iPad not only magnifies but holds a number of apps that help me with the little inconveniences of being visually impaired. When I need a professional reference book, I buy a hard copy but also request a pdf version. I am on record with several publishing houses and they are required by law to provide those to me. Disability does have some privileges. Once I download the pdf version into NaturalReader, my iPad reads to me and I follow along in the book. [Hadley has great ‘how to’ videos on using an iPad.]

I can also “read” books on my iPad. Since I am legally blind, I am qualified to use BARD. BARD is great! There are hundreds of thousands of audiobooks available for free. Love that word free. [BARD is just one resource available from the National Library Service program ‘That All May Read.’ For those who qualify, there’s also an easy-to-use audiobook player with cartridges you can get.]

I go in spurts and stops with my “reading” any more, but I watch TV on my iPad regularly. There are a number of broadcasting companies that offer free apps. While they regulate what you can access for free, they do let you access more if you have a cable company and register. I like watching Tv on my iPad because I can “magnify” the picture by shrinking the distance to the screen. Another thing you might be interested in is audio description. I watched ‘All Creatures Great and Small’ on PBS and the audio description was helpful and not intrusive.

Other Tools for Magnification

Two more things before I go: magnification and magnification. I have a handheld, electronic magnifier that is good for restaurant menus and the like and a pair of telescopic glasses. My telescopic glasses are MaxTV glasses. I have a friend now who likes to go to the movies. I wear my MaxTV glasses and the 3-D glasses at the same time. Avatar 2 was stunning. [Her MaxTV glasses are from Eschenbach, a company considered to be one of the best for such products. There are less expensive products you can find through sources such as Maxiaids or Independent Living Aids. I don’t recommend you try the least expensive, though. Read the reviews and definitely make sure that you can return them for free if they don’t work for you.]

So there you have Sue’s Toolbox, 2023 version. I will be the first to admit the price tags on those things can be a bit shocking. Just remember the three important points: magnification, magnification, magnification. The same results can be accomplished in other ways. Hope this helped!


Finding Help to Create YOUR Toolbox!

Low Vision Therapy

Linda: We recommend that since there are so many options for these and other low vision aids, some of which are expensive, it’s best to find a low vision therapist, low vision occupational therapist, or a vision rehabilitation program where specialists will listen to what you want and need to do but can’t and will help you find what works for you. There is no ‘one size fits all.’

We recommend that to find low vision therapy near you, start by going to the VisionAware site to ‘Directory of Services’ (bottom or side of the page depending on what device you’re using) where you’ll enter your zip code (US) or province (Canada). In the UK, there are 2 great groups who can help: The Macular Society and the RNIB. You want to look for non-profit organizations, universities, or government resources where they’re not profiting from the sales. You can of course ask your eye specialist for organizations/specialists near you.

Vocational Rehabilitation

In 2016 when Sue became legally blind from advanced dry AMD/geographic atrophy/GA, she contacted Pennsylvania’s Bureau of Blind and Vision Services/BBVS because she wanted to continue to work. You can read about that here: A Human Doing. They provided some of the low vision aids such as the magnifiers, telescopic glasses including MaxTV glasses, the CCTV, software ZoomText and NaturalReader, a basic iPad, and a white cane. They also provided her with some training on some of the devices. She also had what’s called Orientation & Mobility training to help her get around safely. She did pay a fee based on a sliding scale of income. Every state will be different.

You can find your state or province vocational rehabilitation resources through the link to VisionAware above. You can also ask your eye specialist about it.

More Resources

A good resource for products and technology is VisionAware which is a not-for-profit organization with the APH (American Printing House). Check out this section ‘Helpful Products and Technology for Living with Vision Loss.’

Magnifiers and telescopic glasses that she refers to are called ‘optical devices.’ Here’s a good article about them with examples ‘What Are Low Vision Optical Devices?’


New March 19th, 2023

My Diabolical Plan – Revisited March 2023 – by Sue LaBar Yohey

Some of you may know I can be persistent -very ! -and even manipulative. I get a plan in my head and make the moves to follow it through.

Ever since I was diagnosed as legally blind with geographic atrophy, advanced age-related macular degeneration, in February 2016, I have had a master plan, a DIABOLICAL plan, for recovering my eye sight sometime before I die [Linda here: curious how old she is? At the time of this article, she is 69. She’s determined to live a LONG time. ::smile::]. This plan started with presenting myself as a patient to the esteemed retinologist Dr. Carl Regillo  from Wills Eye Hospital in Philadelphia. I then expressed interest in being in a study. I wanted a clinical trial hopefully involving stem cells.

After what seemed like dozens of trips to Bethlehem, Pennsylvania, my persistence paid off. I was offered a place in phase 3 of a study using a complement factor inhibiter that had been considered to have promise. While initially it seemed as if being offered this study was one step to the left of where I wanted to be, I decided to take it. It was my “in” and I was not guaranteed another opportunity.

As it turned out, I had the honor of being part of the trials that brought forth the first, FDA-approved treatment for geographic atrophy. This is Syfovre from Apellis.

How do I feel about this? While my contribution was small, it is still kind of cool to have been involved in the making of medical history. I feel like the water boy for the Super Bowl or maybe like the ball boy/girl at Wimbledon. Helping to make it happen gives me pride.

So here I am, two steps in the Diabolical Plan successfully behind me. I manipulated getting to see Regillo, I wanted him as a doctor and took steps to make that happen. Regillo almost guaranteed I would be in a study. Funny, although I had no way to determine the outcome of the study, I never doubted the treatment would be approved. Forgive my arrogance, but without its approval, my plan could not progress, and, as far as I am concerned, it IS happening. If my plan was going to work, the treatment had to work first. I never doubted.

Right now, I am half way through a 3-year study in which they are searching for side effects. For me, this study is a place holder in three ways. First of all, it keeps me in front of the doctors running the show. While I cannot go into just any old study, I could go into another study involving Syfovre. When one of those comes along, I will be bouncing up and down on the sidelines. “Put me in, coach. I want to play!”

The other reasons this study is a place holder are these: medical science is not there yet.
Also, Syfovre is not the best we can do.

Second one first: while the Benz Motorwagen was a great innovation in 1886, it was also not at the front of the pack for long. And yes, that really was the first car. I looked it up.) Just like the Benz Motorwagen was replaced by more efficient cars, there will be other, better treatments for GA. My believe is the ultimate “treatment” will be “replacement parts”. Enter stem cells.

They have now learned how to “reverse engineer” blood and skin cells to become induced pluripotent stem cells. Once you have these, they can be “coaxed” and “massaged” into becoming retinal pigment epithelial cells. Remember RPEs are the “servant cells” that keep the photoreceptors alive. Without RPEs there are no photoreceptors and no sight.

According to a panel member on the March 2nd, 2023, webinar ‘Towards a Stem Cell Cure for Blindness,’ lab-grown RPE cells might be available to the general public in about six years. They are moving fast but they are still in phase 1 trials. In other words medical science is not ready for me yet.

Moving on with my thinking, Syfovre will be a way for me, and perhaps millions of others, to buy time. Syfovre slows the deterioration. Current wisdom is that stem cell therapy and RPE replacement stops deterioration. If Apellis wants to sell their drug, they have to prove it will not keep people from eventually benefitting from the superior treatment. Voila! There is my – yet imaginary – next step in my Diabolical Plan. Put me in, coach!

And just a reminder, replacing RPEs will not restore vision. As I have said before, dead is dead and a number of my photoreceptors are dead. However, replacement RPEs will stop my vision from getting worse. They may also improve it slightly, not much, by resuscitating photoreceptors on their last legs.

What about photoreceptor replacement? After all, I do need those replaced to restore my vision. That technology is much further down the road but still getting closer every day. It will get here in time. After all, I have a Diabolic Plan to complete!

Who is Sue and Why Should You Get to Know Her?

The Facebook Group

First, it weren’t for Sue, the Facebook group wouldn’t exist! We’ve been close friends since college which is now a LONG time ago. In June 2015 she was driving, got something in one eye and closed it, and the car in front of her disappeared! You can read about that and how her journey with AMD began here: In the Beginning. In February 2016 when she was told that she was legally blind, she asked me to create a site for her so that she could process what was going on and to hopefully help others. In May 2016 after months of not being able to easily have conversations with followers, I started the Facebook group. The rest, as they say, is history.

Her Journey

After less than a year of learning how to deal with her visual impairment both physically and emotionally, Sue created a ‘normal for her’ life. What is it like? It’s like her life ‘before’ except she does not drive. What she does is travel domestically (sometimes even by herself) and aboard, works as a psychologist, walks her 2 active Labrador Retrievers, attends multiple exercise classes every week, rides her bike safely, takes photographs (some of which have won awards locally), skis in the Winter and rafts in the Summer, goes to social events with her friends and co-workers. She’s also taught courses in the psychological therapy called DBT (Dialectical Behavioral Therapy) that she uses with her clients and used herself in the beginning of her journey.

What she does NOT do is let her geographic atrophy stop her from doing what she wants to do. As she said herself she is persistent and determined.

For quite a few years, she wrote for this site, but it’s now more an archive. She writes for Health Union’s maculardegeneration.net site where you can read her more recent articles. As she wrote, she was in the phase 3 Apellis Pharmaceuticals clinical trial for what was called APL-2 then, was invited to be in the long-term follow-up study where it was called pegcetacoplan which is called Syfovre since it’s approval by the FDA on February 17th. 2023.

When asked what her visual acuity is, she says it’s 20/63 to 20/80 in one eye & between 20/160 and 20/200 in the other. Yes, she has a blind spot in the middle of each eye but has taught herself how to use her ‘sweet spot’ also called a Preferred Retinal Location.

 

 

 

 

Myopic Macular Degeneration: Understanding the Basics

by Frank Chen (see his biography at the end of the article).

The prevalence of myopic macular degeneration is on the rise worldwide, and new research is providing greater insight into this complex condition. As our understanding of the condition continues to evolve rapidly, staying up-to-date on the latest developments is crucial — starting from the fundamentals.

Myopic macular degeneration is a debilitating eye condition that affects millions worldwide, leading to a gradual loss of central vision. Like age-related macular degeneration (AMD), myopic macular degeneration affects the central part of the retina, causing symptoms such as blurry vision, distorted vision, and loss of visual acuity.

However, myopic macular degeneration is primarily associated with high myopia and pathologic myopia, which affect people at a younger age than AMD. In this article, we will discuss the key terms and definitions related to myopic macular degeneration, its causes and prevalence, and the treatment options available to manage the condition.

Understanding the Key Terminology of Myopic Macular Degeneration

Myopic macular degeneration is an eye condition that is becoming better understood through ongoing research. As we learn more, terms and definitions evolve or are added to our understanding of this condition. Here are some important terms to know:

Myopia: This is a common refractive error that causes distant objects to appear blurry. It occurs when the eyeball is too long, or the cornea is too curved, causing light to focus in front of the retina instead of on it.

High myopia is a more severe form of myopia, usually defined as more than -6.00 D in diopters. It is often confused with pathologic myopia, which causes degenerative changes in the back of the eye.
Pathologic myopia occurs when the eye grows too long, leading to changes in the back of the eye. These changes can cause problems such as blurry vision, difficulty seeing in low light, and even vision loss.

Myopic Macular Degeneration (MMD) is also called myopic maculopathy (MM); it is one of the most common types of pathologic myopia. It occurs when the cells responsible for sharp, detailed vision in the eye start to die. And patients gradually lose central vision.

Myopic chorioretinal neovascularization (myopic CNV) is also referred to as myopic macular neovascularization (MNV) in many publications. It happens when abnormally new blood vessels grow under the macula. As blood and fluid leak into the macula, it damages the retina cells, which leads to vision loss.

Causes and Prevalence of Myopic Macular Degeneration

Myopic macular degeneration is a condition that affects the central part of the retina, known as the macula, and causes it to degenerate. This can result in symptoms such as blurry or distorted vision, dark or empty areas in the field of vision, and a gradual loss of visual acuity over time, similar to age-related macular degeneration (AMD).

The exact cause of myopic macular degeneration is unclear, but several factors are believed to contribute to its development. These factors include elongation of the eye, cracks in the retina, and protrusion or bulging of the back part of the eye (myopic conus).

As myopia is becoming increasingly common worldwide, studies found a rise in the prevalence of myopic macular degeneration. It was projected that by 2050, around 50% of the global population could have myopia.

Furthermore, the risk of developing pathologic myopia, which could lead to myopic macular degeneration, increased with higher degrees of myopia. Age was also a significant factor, as individuals with high myopia aged 40 or older had a higher risk of developing pathologic myopia.

Studies showed that pathologic myopia affected approximately 1-3% of Asians and 1% of Caucasians. Pathologic myopia was identified to be the leading cause of irreversible blindness in several Asian countries. While in Western countries, it ranked as the third leading cause of blindness. Both ethnicity and country of origin seemed to play a role.

Treatment for Myopic Chorioretinal Neovascularization (Myopic CNV)

Several treatment options are available that can help slow the progression of myopic chorioretinal neovascularization (myopic CNV) and improve vision. The primary treatment for myopic CNV is anti-VEGF therapy, which includes several different drugs like ranibizumab (Lucentis), aflibercept (Eylea), and conbercept (Lumitin). Although bevacizumab (Avastin) is not FDA-approved for myopic CNV, it may still be used as an off-label treatment due to cost.

In cases where anti-VEGF therapy is not suitable, verteporfin photodynamic therapy (vPDT) may be recommended. However, vPDT didn’t show significant improvement in visual acuity and could damage the retina cells, leading to a worsening of vision instead. Therefore, intravitreal anti-VEGF therapy is considered the standard-of-care treatment for myopic CNV. As with any treatment, there are benefits and risks. Therefore, it is important to discuss treatment options with your healthcare provider to find the most effective and appropriate treatment for your specific situation if you have myopic CNV.

Key Takeaways

In conclusion, myopic macular degeneration is a serious eye condition that affects millions worldwide, leading to a gradual loss of their vision. While it shares similarities with age-related macular degeneration, myopic macular degeneration is primarily associated with high myopia and pathologic myopia, which affect people at a younger age. With the rise in myopia prevalence worldwide, understanding the latest development, starting from the fundamentals, is essential.

Fortunately, there are treatment options available for myopic chorioretinal neovascularization. And it is fueled by ongoing research and innovation, providing hope for a bright future for people living with this condition.

About the Author

Frank Chen is a highly experienced health educator and medical writer with almost two decades of experience in the healthcare and pharmaceutical industries. He holds a Bachelor of Science degree and an MBA, and is also certified in nutritional sciences and medical writing, bringing a broad range of knowledge to his work. Frank is deeply committed to enhancing patient health literacy and promoting better patient outcomes. His passion for helping patients understand their health conditions is evident in his exemplary education work for ocular conditions at clearsightcorner.com.

Frank has collaborated with top medical experts in ophthalmology, diabetes, and cardiovascular fields throughout the years. He has also played vital roles in developing and implementing patient communication or support projects that have had a profound positive impact on the lives of hundreds of thousands of patients across multiple countries.

Article published Feb. 25th, 2023.

Back: Guest Author Pages

 

Sue’s Great Adventure – Landed!

Haven’t read about how she packed & then got to departure day? Click here.

I landed. At the gate when we landed were half a dozen people pushing empty wheelchairs and picking people up to get to connecting flights. A wheelchair pusher was supposed to be my guide across the airport. I was supposed to be the pushee.

Nope, thus the first real glitch in my great adventure. It came about because of my own stubbornness. I will not be pushed through the airport when I am able to walk.

And that, my dears, explained why I was race walking through the Charlotte airport trying to keep up with a flight attendant who was going to be late! We had a nice, little jaunt through a few hundred folks.

Since they no longer serve anything that resembles food on planes, I just had my first Bojangles, four-piece meal in the airport. I used my phone to take a couple of photos of the menu. Then I enlarged the photos so I could read what they were. Not too bad.

Uh oh. Battery in my iPad is running down. Having a power source is important when you are as dependent as we are on electronic devises. Here in Charlotte and many, many other airports, they have “electric chairs.” Not the execution sort. The sort that have plugs in the supports. Never being one for decorum, I reverted to crawling on the floor to find it and plug in. If you cannot find it yourself – after all, I have found plugging hinges into outlets has become a nemesis since I lost my sight- ask someone to do it for you,

Sounds like we are getting ready to board for the last leg of this journey.

Friday morning

I am here! I made it!

We flew into Denver International, which is freakin’ huge! My navigation skills have always left a bit to be desired, but after a trip to the bathroom and a few requests for directions from airport staff to get me going in the right direction, I got to the baggage claim. As I was being swept along with the crowd, it dawned upon me that I probably would not have needed to ask. I just followed the mass of humanity headed for their luggage.

When I got to the baggage claim, there was a board saying which carousel my bag would be on. By that time, though, I was in contact with my friend via text, and she guided me to baggage area 17. Even if I had not been able to talk to her, there were several people looking at the board and I could have asked. Played the blind, old lady card again. Or, I could have fired up Be My Eyes or I could have taken a picture and enlarged it. Where there is a will, there is a way.

My bag had a large, orange bow on it. That made it easy to spot.

All told, it was a pretty uneventful, first foray into the world of traveling “blind.” The problems I had came from my own obstinance. (FYI I think there was also a wheelchair waiting for me in Denver. I said hello to the guy and kept walking!) I would not have had questions about navigation if I had taken the ride.

After they picked me up, my friends took me to an Indian restaurant. Since I am generally a meat, potatoes and a veggie sort, I would not have known what was on the menu if I could have seen it. My friends picked a few things for me. If I had not had them with me, I would have used my handheld magnifier or asked the waiter.

This is doable!

NEXT: Coming Home!

Sue’s Great Adventure – D Day aka Departure Day

If you haven’t read Sue’s first page about packing, click here.

6:15 am Thursday

D Day! That is Departure Day for my Great Adventure to Colorado. Yowza. So far that is without an exclamation point. I am a little anxious and still in disbelief that I am actually going.

I am leaving all sorts of work undone. I worked right up until 4:00 pm yesterday seeing clients. I will have that paperwork and the results of my husband and the dogs living “the good life” without me to contend with when I get home. It is nice to have a purpose; I guess.

Hurricane Ida rolled over us all day yesterday. Monsoon season in Pennsylvania. The garage and the basement took on water. There are a couple of low spots on our usual route out of here, so the first leg of the journey – getting out of town – may require some creative navigation. Oh well, who would expect things to go totally without a hitch?

6:36 am? I guess it is time to get out of bed and wander down the hall. Following my mother’s advice: every great journey begins with a trip to the bathroom!

7:47 am. T minus four hours.

I signed up for text messages last evening. Glad I did because I just got a text from the airline. Leaving on time from gate 5. Okay. Guess I can find gate 5.

I have been wandering around the house trying to figure out what I need that I forgot. I have to keep reminding myself Denver is no longer the frontier. They have Walmarts!

I also just took photos of my paperwork. Never mind I have made about four copies of it already! Don’t know what I did before I had a home printer. Anyway, that photogenic paperwork included my “vaccination passport.” I already had a paper copy of that in my wallet, but what the hey.

9:55 am T minus 1 hour and 52 minutes

Here I am. Gate 5! So far things have gone pretty well. My only screw up was packing a new tube of toothpaste. I hope the cleaning people like Colgate.

Anyway, people have been very nice. Truth of the matter is, playing the legally blind card seems to work wonders. I have been depending upon HUMINT totally so far. Of course, it is early yet, but I haven’t had to break out any of my old, blind lady paraphernalia. [Linda here: I had to look up HUMINT. It’s Human Intelligence!]

I do need to get a drink so I can take my motion sickness pills in about an hour. Reconnaissance mission to the closest food court coming up!

10:30 am T minus 1 hour and 27 minutes

Successful mission! This is a small, local airport so basically all I did was wander down the corridor a little bit. I am back at Gate 5, diet soda in tow.

While I was wandering around, I got my notice about my meet and assist service in Charlotte. Cool. There should be someone waiting for me there. The notice suggests I also get meet and assist support in Denver and Charlotte on the way home. See how that works.

That is it for now. I will pick up on another page when I get on the plane. So far, so good!

nexT: LANDED!

Sue’s Great Adventure: Packing

It is less than 72 hours to launch. Today is Monday. Thursday I start on Sue’s Great Adventure. Oh, boy. Can you say ambiguous? Also, after a year and a half of COVID existence, it does not seem possible I will be getting out of town. Alone.

God helps fools and children. I meet one of those criteria.

God helps those who help themselves. Working on that one, which brings me to the topic of this page; how am I supposed to pack as a visually impaired person? Excellent question. My answer: I have no idea, really.

The problem with being visually impaired – or at least one of the problems – is stuff. I have a lot of stuff. So far I have thrown several vision aides into my bag. I have a handheld electronic magnifier and my Max TV glasses. I have a small monocular to wear around my neck.

I also have my iPhone, the Swiss Army knife of modern existence. On my phone, I have Google Maps. Google Maps can give me walking as well as driving directions. If I put where I started from in and program it for a return trip, Google Maps will return me to my starting place. Good for those of us with questionable senses of direction, not to mention an inability to read street signs or paper maps.

I also have Be My Eyes on there. If I call up Be My Eyes, a volunteer will answer to read things, identify things, just generally to be my eyes.

Not only is my iPhone camera a camera, it is also a QR code reader. We will be touring at least one national park. The United States Park Service is moving towards accessibility through labeling all sorts of interesting things with QR codes. With my phone and its QR code reader, I will be able to read all about it without having to put my nose on the sign.

Then there is my iPad, of course. I seem to have lost my second pair of AirPods, so I think I will take a pair of headphones to listen to books and TV in the airport and on the plane. Sometimes I wonder how I lived without my iPad.

A trick I always used is marking my luggage with something distinctive. I have used colored duct tape or a big, bright bow. I try to make it easier to find MY hunter green, canvas bag as opposed to the other 36, hunter green, canvas bags on the luggage carousel.

I will be meeting my friends in baggage claim in Denver. If I cannot make it easy for me to see them, I guess I will have to make me easy to be seen. Maybe my tie-dyed hoodie or a bright orange sweater?

Those are some of my ideas about packing as a novice, solo traveler. Maybe I am on the money, maybe not. Dunno. I guess I will find out as I go.

written August 31st.

Next: D SUE’S GREAT ADVENTURE – D DAY AKA DEPARTURE DAY

Daydreams About Driving – Part 2

Last time I was reviewing an article entitled Seniors and Driving: A Guide. My page then was about how to know when it is time to hand in your keys. This can be a pretty traumatic thing for many people and even some of us who embraced the change – in my case out of fear of killing someone – can have longings to be back behind the wheel. I confess, sad but true, on our last cruise, I kept going back to the bumper cars so I could DRIVE.

Just because you are afraid your driving days have come to an end, though, it may not necessarily mean they actually have. One of the best ways to make sound decisions is to check the facts. A really good way of checking the facts is to go to the experts.

A good place to start would be going to your doctors [Lin/Linda here: notice it is doctors PLURAL Many of you have a team of doctors such as general practitioners, specialists and eye doctors]. A world of difference might be found in a change of medication or a change in a glasses prescription. Make sure you are as healthy and functional as modern medicine can possibly make you.

Oh, and remember, healthy is as healthy does. You have to do your part as far as diet, exercise, avoiding drugs and alcohol…. You know the drill.

After the stops at the doctors, you should probably go to the driving professionals. There is such an animal as a certified driver rehabilitation specialist. If you are too far gone to drive safely, the specialist will tell you so. If you are fine but fighting your family, the specialist can clear you. (“Na na! Told you so.”) If you are somewhere in the middle, you can get some lessons to teach you new skills and eliminate bad habits.

The specialist can also suggest special devices such as more and/or better mirrors or other adaptations. There are states that allow drivers with vision impairment to use bioptic lens systems, if your state is one of those, a driver rehabilitation specialist will be able to help you find resources to explore that option. [Lin/Linda: When you check out these bioptic glasses for driving, you’ll see that they don’t come down over your eyes. They sit above them. You learn to glance into them to better see signs and intersections.]

Although people often fear “the man” in situations like this, your state’s motor vehicles department may be just the place to find support in allowing you to continue to drive and drive safely. Pennsylvania endorses a number of options for older drivers. For example, AAA and AARP both have older driver programs. Other programs endorsed by this state are offered by ADEPT Driver and Improv. I have no idea what these programs are like or in what other states they may be offered, but Pa DMV seems to like them.

Deciding whether to continue to drive or to hang it all up is a life changer. Even though I believe I made the right decision five years ago, I still have days all I want to do is jump in the car and go. My main goal for continuing as a lab rat? You got it. It is the very selfishly motivated goal of some day being able to drive again.

No matter what your decision is, it has a greater chance of being the right one if you check all the facts and investigate all the options. Happy research and good luck!

 

Hiding in Plain Sight!

My husband made hamburgers for lunch today. I wanted baked beans with mine but when I looked in the cupboard, I saw none. I had realized earlier in the day that I really need a grocery run and I berated myself for letting yet another thing run out.

About two minutes ago I looked in the cupboard again. I have an 8-can case of baked beans just sitting there! I swear there are elves in this house. Their sole job is to hide things and drive me insane. Either that or things are hiding in plain sight.

Now some of this is actually normal. Everyone who has had a psychology class on attention in the last 20 years knows about the “gorilla” walking through the basketball game. Because they are paying attention to the number of passes in the game, a good percentage of people watching the video totally overlook the gorilla. The concept is called inattentional blindness.

I was looking for loose, individual cans and not a box. Certainly the box not satisfying my search criteria had something to do with it.

But let’s be honest. While some of my inability to see things right in front of my face has to do with inattention and preconceived notions of what I am looking for, a lot of the problem is my poor vision.

I have blind spots. I am also badly near-sighted. It can be a rough combination at times. Add to that the fact I am disorganized and sloppy, and it can be a recipe for frustration.

Sometimes I just handle it by having lots of supplies. Take pens for example. I have a pile of “junk” paper under my chair, I use it to take notes in therapy. Today I dropped a pen down there…somewhere. It was easier to grab another pen than try to find it.

But again, in the spirit of full disclosure, I have to admit I spend hours in a week searching for things I have sat down and now cannot find. My phone, iPad and glasses come to mind. They are usually in plain sight…for other people. My unlit iPad in its black Otter case is sitting on the black tray of my CCTV. My unlit phone is sitting on top of the iPad. Somewhere in the weird recesses of my mind I guess I thought if I lost them together, they would be easier to find. Maybe?

I looked for ideas about how to deal with blind spots. The internet has lots of ideas for eliminating blind spots while we are driving. It has almost as many articles on eliminating psychological blind spots. I found pretty much nothing on dealing with blind spots when you are actually visually impaired.

Having a place for everything and everything in its place has been suggested to me. Did I mention I am a slob? And a piler. Also, my husband’s ideas of the proper places for things really don’t match mine.

Consequently, I default to “borrowing” other people’s eyes quite a bit. Refrains of “where did I put…” are heard multiple times a day. There is also the ever popular “Do we have any…” My husband is pretty good. He has only suggested I hang things around my neck a few times and has refrained from suggesting things be nailed to my hand. When alone and in a pinch, I have also used Be My Eyes to find things, although I hate for people to see the clutter in the house.

Bringing me to the question: how do you handle the things hiding in plain sight problem? Next time I would really like to find those baked beans!

Written April 15th, 2021


Next: Coming not far in the future!

I Passed My Poop Test!

Hey, guess what! I passed my poop test! You know what I am talking about. They advertise on TV as a screening for colon cancer. You poop in a box and send it to Wisconsin.

I did it just fine last year. No problems. This year I had two failed attempts before my offering was accepted. My husband told me I obviously don’t know sh** but I don’t think that was it at all. I did not read the directions.

I admit it. My CCTV magnifier was in the sunroom on the first floor. I was in the second floor bathroom with my “poop in the box” kit. I did it last year. What could go wrong?

The first time they called to tell me I did not have to put preservative in the little test tube thingie. The second time I had not put all of the preservative on the sample. The third time was the charm. I passed my poop test!

I am imagining many of you have problems with written directions. I could have had enough forethought to look at the directions before retiring to the powder room. Maybe. That generally does not happen. I could have used Be My Eyes, but I would have felt it inappropriate to be calling from the toilet. After all, they do use the camera in the phone. I could have had my husband read the directions to me only I am not sure where he was at those times.

I had him read the paperwork for my second COVID vaccination yesterday. Probably should have figured out a way to get him to have the side effects, too! Just love those fever and chills; not!

So, options when you are not able to read directions:

  • Take you magnifier with you.
  • Either that or look at the directions prior to doing the procedure.
  • Ask a lovely volunteer at BeMyEyes to read the directions. Just be sure not to embarrass her or you by what else she might see!
  • Call the company – like the poop in the box, folks – and ask them to review the instructions with you.
  • Or, ask a spouse or family member to read the directions to you.
  • A higher tech option would be to take a picture with you KNFB reader and let the program read to you.

There are a variety of ways to avoid failing your poop test. Hope these were helpful!

Written March   2021

Next: Not sure, but after this page who knows!!!

Should I wear sunglasses? What kind are best?

Question: Should I wear sunglasses? What kind are best?

Answer: ABSOLUTELY you should wear them anytime you are outside even on cloudy days. They are not, however, all created equal.

Summary of what type of sunglasses are best

Choose frames that wrap around close to your face on the sides, bottom and top (either worn without glasses or as ‘fit overs’ worn over glasses). For flat or wraparound frames that don’t fit close to the face, an anti-reflective coating on the back side of the lens is recommended to reduce reflections into the eyes when bright light comes onto the face.

The lenses should filter out 100% of the UVA & UVB rays of the sun and be polarized. Just because they filter 100% of the sun’s rays does NOT mean they are polarized.

Polarized sunglasses can be worn indoors. However, if you want to look at a computer screen with them, you need to turn the device 90 degrees in either direction.

For normal conditions, the lenses should be a warm color such as amber, copper, or brown. They help reduce glare and improve contrast. These colors naturally filter out some blue light (also called HEV) of the sun which has been linked to AMD. The % of blue light/HEV blocked can vary by brand.

If you are often in foggy, overcast, dawn or dusk conditions, yellow lenses are helpful. Be careful when you read about ‘driving glasses’ with yellow lenses. They are too dark for night driving – clear is best – and too light for day driving.

For low light environments, a clear lens is the best.

If you are frequently in environments where there’s a lot of reflected light such as from snow or from water, a mirror finish is recommended. There are various colors of mirror finish, each with different characteristics.

If your environment changes regularly, you may want to have several pairs of sunglasses. One type of lens cannot handle them all.

We recommend that you purchase your sunglasses from a source where the specifications can easily be found to tell you how much blue light is being filtered. Also, they should be scratch resistant if possible. Some companies have great warranties. If you are not buying them where you can try them on, make sure that you can return them for free or at minimal cost.

Why and What

Why

Everyone should wear sunglasses. Get small children in them very, very early, and they will always use them.
Over 80% of lifetime sun exposure occurs before age 19. That doesn’t mean it’s too late to start wearing sunglasses!

People with AMD already have inflammatory damage to the retina and need to reduce the additional oxidative damage from sunlight by wearing proper sunglasses.

Eyes with light-colored irises also have lighter pigmentation in the retina and are more susceptible to light damage. That doesn’t mean that dark-colored irises filter out damaging light so that you don’t need to wear sunglasses. It means that it’s especially important for those with light-colored eyes.

People who have had cataracts removed let more light INTO the eye because the aging brunescent [means brown] lens has been replaced with a clear implant.

Do you wear contacts that have a UV blocking coating You still need to wear sunglasses because the only part of the eye protected is behind the lens. Also, they don’t filter out the blue light of the sun that has been linked to the development and progression of AMD.

Taking certain medications can make your eyes more susceptible to light damage.  In general, any medication that can make your skin more sensitive to light can make your eyes more sensitive to light. Also, some birth control & antibiotics can do that.

What

Lenses

They should filter out 100% of harmful UVA/UVA rays of the sun and as much blue light as possible:

You can, of course, get them from your optometrist where the options are presented to you & recommendations are made.

How do you know for sure if they do before you buy them: read the tags on them or the description online if that’s where you are buying them.

Coatings

Polarized Lenses

They have a laminated filter on them to block a portion of light from passing through to the eye. Polarized sunglasses were designed for settings in which light is intensified by reflecting off flat surfaces, increasing the amount of light and making it very difficult to see clearly. They are recommended for driving during the day.

Anti-reflective coating on the back of the lens

If your sunglasses don’t wrap around close to your face, try to get an anti-reflective coating on the back of the lens. It works to reflect any light that bounces off of the back of the lens and that goes into your eyes making it harder to see and causing more glare.

Night driving glasses

Although they are advertised more and more, they aren’t really a good idea. The article ‘Night driving glasses: Help or hoax?The article ‘ talks about a study where people wore yellow or clear lenses and were tested to see how they reacted to pedestrians. “Our data suggest that wearing yellow lens glasses when driving at night does not improve performance in the most critical task: detection of pedestrians,” the study authors said.


GO BACK TO FREQUENTLY ASKED QUESTIONS

What can I do for computer/digital eye strain?

QUESTION: What can I do for computer/digital eye strain?

ANSWER:
In a previous FAQ, I listed the symptoms of computer eye strain which are caused by staring at an electronic device for a long time. The symptoms are:

  • Sore, tired, burning or itching eyes
  • Watery or dry eyes
  • Blurred or double vision
  • Headache
  • Sore neck, shoulders or back
  • Increased sensitivity to light
  • Difficulty concentrating
  • Feeling that you cannot keep your eyes open
  • It’s not from the blue light (the research done on this is only being done on mice). Blue light has only been linked to causing an interruption in the sleep cycle (more about that in a comment below).
Will this cause permanent damage to my eyes in other ways?

From the Mayo Clinic article: ‘Eyestrain doesn’t have serious or long-term consequences, but it can be aggravating and unpleasant. It can make you tired and reduce your ability to concentrate.’
and
“Extended use of computers and other digital devices is one of the most common causes of eyestrain. The American Optometric Association calls this computer vision syndrome, or digital eyestrain. People who look at screens two or more hours in a row every day have the greatest risk of this condition.”

What can you do to alleviate the symptoms from computer/digital eye strain?

From the article ‘Computer eye strain: 10 steps for relief’:

  • make sure you have proper lighting. We know that those with AMD need more light than before;
  • minimize glare. Is there light coming in from outside that is reflecting on your screen? You can close the curtains to reduce that. You can get a non-glare cover from your screen;
  • how old is your computer monitor? LCD screens are easier on the eyes;
  • adjusting the display settings: is the text large enough? Is the screen bright enough?
  • blink more often! Every 20 minutes, blink 10 times by closing your eyes as if falling asleep (very slowly). This will help re-wet your eyes;
  • exercise your eyes: look away from your computer at least every 20 minutes and gaze at a distant object (at least 20 feet away) for at least 20 seconds. Some eye doctors call this the “20-20-20 rule.” Looking far away relaxes the focusing muscle inside the eye to reduce fatigue.
  • take frequent breaks;
  • is your workspace set up for ease of use?
  • Have you talked to your eye specialist about the coatings available for your eyeglasses?


GO BACK TO FREQUENTLY ASKED QUESTIONS

Filling in the Gaps

Recently Lin steered me to a video by Sam of The Blind Life. Sam was explaining how he sees and taking exception to those representations of macular degeneration that have opaque, black blobs in the middle. Lin was interested in exactly what I see. Maybe we can expand this to what you all are seeing, too.

First of all, a little clarification. Sam has Stargardt’s Disease which is the “juvenile” form of age-related macular degeneration. He has been legally blind since probably his teens [Lin/Linda: actually, since he was 11.]. We are talking 30 plus years. Compared to Sam, I, with my paltry 4 years as a VIP, am very much the new kid on the block. My experience and knowledge cannot begin to match his.

For those who don’t yet know who Sue is, check the end of this page.

That said, it was a relief to discover that Sam with over 30 years of macular atrophy seems to see pretty much what I see. The reasons for the relief are two in number: 1) I am apparently doing this macular degeneration stuff “right” and 2) I am reasonably well assured I am not going to develop a big, honkin’ black hole in my visual field. Hallelujah!

What do I see? I have a fuzzy gray spot in my central vision. It is not opaque as sometimes it seems as if what is behind it is “bleeding through”. I often know there is something there but cannot see it clearly.

That is not 100%, of course. There have been times I have known something was there only because of sound or the perception of motion. If it is silent, stationary and/or not offering contrast to its background, I have been known to miss it entirely. Case in point, I somehow missed three jars of mayonnaise on the shelf. Three! I ordered another one from the grocery. My husband suggested I get a fifth one so I could have cinco de mayo. Cinco de Mayo; got it? [That’s a good one!] Oh, never mind. Anyway, the point is, things can disappear in the “haze” of my blind spot.

Another point Sam makes involves the concept of visual closure, although he does not label it as such. Visual closure is how your brain turns several segments of arc into a circle even though, in fact, the segments are not connected and not really a circle at all. Your brain closes up the gaps.

Sam was talking about how his brain fills in the gaps in pretty much the same way. Sam was talking about how he sees his blind spot as the same color as whatever is surrounding it. For example, the light switch might disappear and all he “sees” is beige wall.

I can get the same sort of thing going on if I look at the sky. The blue fills in and the bird I am watching disappears. If I am looking at a tree, my brain will fill in the sections of the branches that are in my blind spot. Sort of like connect the dots. That branch cannot end and miraculously reappear over there. Ergo, my mind closes the gap and I “see” the middle section of the branch. Brains are weird and amazing things.

And speaking of weird and amazing, we have had conversations with a woman whose brain filled in such a beautiful picture of an empty highway she had no idea she was about to be in an accident! Scared the bejesus out of her. If your brain is as good at filling in the blanks as hers, please be extra careful.

One more point that Sam made and then I will let you go. Although once again he did not refer to it by name, Sam is an expert at eccentric viewing. He has trained himself to use his peripheral retina very well.

I have been working on it for the past four years and it does get easier. I will use it when I need to see what is down the road that the dogs are getting so excited about. I might not be able to see details well enough to see exactly who is coming towards me, but I can see well enough to see a person and, let’s say, a large black blob that I assume is a dog. Time to move Maggie off the road. PsychDog returns!

Another time I use eccentric viewing is in typing my pages. If I put my macular focal point above what I am typing, I can pretty much read what is going on the page.

As Lin will tell you, I say pretty much because a lot of mistakes escape me. You know how they say the devil is in the details? My dears, the details are the devil when you are trying to use eccentric viewing. The peripheral retina was not designed for fine work.

So, that is pretty much how I see. Sam and I are in agreement. Great minds think alike and all that….But how about your great mind? Do you agree? How do you see? Start the conversation.

Written May 15th, 2020.

Who is Sue?

She’s my friend of 40+ years who became legally blind (20/63 to 20/80 in one eye & between 20/160 and 20/200 in the other) from advanced dry AMD/geographic in 2016. After less than a year of learning how to deal with her visual impairment both physically and emotionally, Sue has a ‘normal for her’ life. At age 66 and with advanced dry AMD/geographic atrophy, she works, attends regular exercise classes, rides her bike safely, travels locally and abroad, takes photographs, walks her dogs, kayaks, attends social events with her friends, co-workers, exercise class buddies, and adding new friends she’s been making along the way!

Next: Catching Up – December 2020

Not Your Eccentric Relative

Three and a half years ago, when I “lost” my second eye, I – an avid reader – had 30 pages left to read in a mystery novel. Not being able to see well enough to read that last, paltry 30 pages was frustrating and heartbreaking. Therefore, when a reader/member recently posted in another forum how she had lost the ability to read and was badly shaken, I got it.  Oh, yeah; I got it.

This reader/member, although shaken, reported she was going to try eccentric viewing. Hallelujah! First of all, I would like to thank her for validating our efforts here.  I am thinking she heard it here first and I am proud and honored to have passed on some valuable and helpful information. Second of all, I want to applaud her for continuing to fight.

There are ways to cope and adapt to vision loss and eccentric viewing is one of them.

Third thing I want to do here is talk again about eccentric viewing. If you are a latecomer to this blog/group or if you forget, let me start by defining eccentric viewing. In a nutshell, eccentric viewing is enlisting a part of your peripheral retina to do the jobs your macula used to do. One of these jobs is reading.

Now reading with eccentric viewing ain’t “pretty”. It involves practice and will never be as efficient as reading with your fovea. An analogy might be turning a screw with a butter knife or pounding a nail with a rock. The job gets done but it is slower and there are more failed attempts. However, some success is generally better than no success.

The first step is to find your preferred reading locus, affectionately referred to as your “sweet spot”. This is different for everyone and may require some searching and experimentation.  The one I have been using is below my fovea.  It works pretty well when I am able to work in close and be reclined – such as now when I am hanging out in bed typing on my iPad. It has not been working so well recently when I am, for example, trying to read the eye chart for the study.   That requires me to lean my head back and I have been getting a crick in my neck. Consequently I have been searching for a spot more in the horizontal plane. Play around and find a place that you like.

How do you play around to find it? Nancy Parkin- Bashizi in The Skill of Eccentric Viewing suggests drawing a clock with a star in the middle. Focusing on the star, see which number is the clearest. That may be your sweet spot for reading

Don’t be frustrated if you keep sliding off your sweet spot. Your brain has spent a life time putting your fovea on what you want to see. It is natural for it to keep trying to do that. Keep moving your focus back. Take it from me, things you are trying to see with eccentric viewing can be darn slippery!  I will get them fairly well in focus for a split second but then my eye just jumps away. I know I saw something but it did not “compute”.

This knowing what you are looking at gets better with practice as your brain learns to adapt. I saw an article about how your brain recruits parts of the visual cortex that normally handle peripheral vision tasks  to take over the reading tasks. If I can find it again I can write a page about that.

Another thing to do is practice keeping your eye still and moving the paper.  Many of the articles I skimmed suggested using an iPad or other brand of tablet so you can scroll the words past your eyes instead of moving your eyes across and down the page. Once you get that sweet spot on the page, you don’t want to lose it! [Lin/Linda: this technique actually has a name: ‘steady eye strategy.’ Here’s a good video demonstrating it.]

Does eccentric viewing work? Yeah. Sort of. I can read short, newspaper articles without magnification if I put my mind to it.  I am slow and make more mistakes than I would like but the job gets done. I can read.  And, in the end,  I guess that is all that matters

Written September 28th, 2019

Next: Rocking and Rolling

Reading and Writing

We were talking the other day about my reading. It is not great. These days my visual span – how much text I can see essentially at a glance – and my discrimination both contribute to slowing my speed and reducing my comprehension.

As I have said before, I can read a few pages here and there. I just no longer do any recreational reading. Audiobooks all the way for this girl.

I found some information on reading rates at perkinselearning.org. This 2017 article about children’s reading reported research findings that large print readers are 1.5 to 2.0 slower than average readers of comparable age. There is no research available comparing acuity and reading rate but anecdotal evidence suggests, as one would expect, lower acuity leads to slower rates. The article also stated “reading” with compressed speech is slower than “excellent” readers’ speeds. In other words, I cannot read as fast as I could before even with the book doing the reading!

So, how might someone write to help a VIP with her reading speed and comprehension? Lin suggested I might want to write a page on writing for the visually impaired. It sounded like an interesting idea but all I found online for references were about teaching visually impaired children how to write. That is not exactly what we had in mind.

I must admit I don’t always write the sort of stuff I would like to read. I like short and concise when I read. When I write, I get carried away. Dependent and independent clauses. This kind of phrase and that kind of phrase. Interjections!

Oh, well…no one is perfect. I write the way I write but if you find any research suggesting a better way, let me know.

What I did find, though, was a review of writing tools, specifically keyboards. Steven John writing for wiki.ezvia.com in January, 2019 came up with six suggestions for the best keyboards for the visually impaired.

Of the six John suggests, large characters on the keys and/ or ultra bright colors appear to be the two, main, adaptive features. That color, by the way, would be fluorescent yellow.

I was pleased to see the keyboard they rated as number one was the keyboard I have for my office computer. This one is the EZSee Low Vision. I got two of them from my technology person from Blindness and Visual Services. That was three years ago and one is still functional.

Having only one be functional after three years may not sound great to you but my tech guy got them at the “Good Stuff Cheap” place for $4 apiece. Remember as VIPs we make up a small fraction of the population. Stuff we think is a godsend may be looked upon by a store manager as a stupid buy and something to send to the liquidator asap. If you can, be sure to check the merchants who sell overstocks and other assorted “trash” first. There can be gold in them there aisles!

Otherwise, my vision searing, fluorescent yellow keyboard can be purchased for $18 plus tax and shipping through Amazon. It got four out of five stars. [Lin/Linda: if you don’t want to buy a new keyboards, I got stickers that are bright yellow with bold, black letters from Maxiaids.com for $12.95 now but I think I paid less. They regularly run sales so watch for them.]

So, back to the original questions. What is happening with your reading? What type of writing is easiest for you to read? Let’s start the discussion.

Written February 10th, 2019

Next: “AND NOW FOR SOMETHING ENTIRELY DIFFERENT”

Happy Anniversary to Us!

Hi! Happy Anniversary to us! It was February 2016 we started this crazy journey. For those of you who have been around since nearly the beginning, thank you for sticking around and putting up with us! For you who are newcomers, welcome! [Lin/Linda: To read Sue’s very first page, it’s In the Beginning.  At the bottom of the page, there’s a link to In the Beginning: Revisited where you can read about how her life has changed.]

I had a déjà vu experience at the beginning of the week. It was January 31, 2016, when I went skiing and came home to a drastic vision loss. It was January 29, 2019, I went back to the same ski slope, had the same sort of glorious day on the slopes and…came home to the same vision loss I had when I went. That was a bit of a relief! [To read about that day of skiing, it’s The Perfect Storm.]

I cannot tell you I am above engaging in a bit of superstitious thinking about such things. I was relieved when nothing happened.

Anyway. What does my vision look like now ? I have a fuzzy section pretty much in the middle of things. Anything I want to focus on is not all there. I recognize people across a room by body type or other clues. I can see faces well enough to identify them from about two feet.

If I am running the dogs at the dog park, they can disappear into my blind spot at maybe 20 yards or so. That is a guesstimate. I am definitely not able to drive. There were men working on the road the other day. I did not see them until we were maybe 30 yards away. Not enough distance to stop if I had been driving at the same speed.

Reading is done but is greatly curtailed as compared to my pre-AMD rates. I can read a couple of pages of standard font using eccentric viewing. I have a terrible time reading handwriting, especially handwriting of those I do not know. Heck, sometimes I have trouble reading my own handwriting! [To read Sue’s page describing how she uses eccentric viewing, it’s How She Sees What She Sees.]

I am typing this with a standard, 12 point font. I read it back to myself and find typos at a fair, not excellent, level. That is on my iPad. If I am writing reports on the standard laptop I use 28 point font. After the office staff puts it in standard form, I proof it using my CCTV.

I am able to do most of my life skills just fine…or as fine as I ever did. I have never been a housekeeper or a cook. If I don’t want to resort to using my toys, I sometimes have trouble reading directions. I have trouble plugging plugs into outlets and, at the beginning of the cold weather, zipping my jacket can be an event.

In other words, it is not awful. A few toys, a few tricks and a little help from my friends and I am making it. This is three years into being legally blind.

Again, a reminder: I have geographic atrophy. That is “the other” advanced age-related macular degeneration. Even though we dry folks make up something like 80% of the AMD population, we get short shrift.

Why? Well, we do not have the dramatic changes in vision or the severe damage the wet people can have. We also do not have any treatments. If any one knows the term AMD and he finds out I have it, he will almost always ask about “eye shots”. Afraid not, buddy. No treatment. No cure. This girl is dry.

I gotta go, but I refer you to some pages Lin is putting on the FB page. Not everyone gets wet AMD. Most of us actually have dry.

Do I think I will get wet AMD? Nope. None of my doctors think I will either. GA is my way.

Thanks again for being with us!

[By the way, February is also AMD and Low Vision Awareness Month. What are YOU doing to make more people aware of these two important topics?]

Written February 2nd, 2019

Next: READING AND WRITING

The Time to Prepare is Now!

Recently we had someone ask what to expect when you are expecting…vision loss. (Sorry. Couldn’t resist!) Although I do not have children, I would imagine there are parallels between the two forms of expecting. They can tell you what might happen. They can tell you what typically happens. They cannot tell you what is going to happen. That awaits to be seen.

The truth is, few of us are normal, statistically speaking. I was told my vision loss was going to be a very slow process. Yeah, right. I “lost” my second eye seemingly overnight. I was told rapid progression like that only happens in the very old. I was 62. So much for statistics!

We are all on very individualized journeys. No one person can say her disease will progress in the exact, same way as the next person. That does not, however, mean no one has ever walked that particular section of path before. Someone in the AMD community has been where you are now. Native guides are available.

The person who wrote was just starting the journey. The expectation of something terrible happening – and not knowing when – is very anxiety producing. I am going to take a liberty and assume the writer was feeling that anxiety and worrying when she asked for guidance.

First of all I would suggest you be mindful of your life just as it is.

We cannot rescue the future by worrying about it but that worry can destroy the present. Always remember to focus on what is good in your life. You have sight now. Enjoy it now. Don’t let your AMD rob you of any more than absolutely necessary.

That said, now is the time to prepare.

Do you have a good retinologist you trust? No? Find one. Do you want to get all sorts of “freebies” in technology and services? Don’t quit your job just yet. The agency I got my “toys” from has a mandate to help people stay in the job market. Those who are not working receive a fraction of the funding I received.

Working or not, I would suggest you start contributing to a “war chest” as soon as possible.

Disability is expensive! Even if you get services there will be things that do not get reimbursed. If you don’t get services, things are much worse.

Check local resources. The day is coming you will not be able to drive. How do you get places? That was my big one but there are others.

Get used to asking for help and accepting it graciously.

Don’t be afraid to tell people you are visually impaired. Admitting weakness is a sign of strength. People like to help, but be careful not to give the “honor” of helping to one or two people. Spread the wealth.

Look for opportunities to participate in the helping cycle as well.

What goes around truly does come around. Just because you are visually impaired does not mean you can’t be of benefit to others. People still need what you have to offer.

Those are the thoughts that came off the top of my head. Comments? Anyone have any other thoughts for the “new kid”? Hope we helped!

Written January 7th, 2019

Next: IN THE MOMENT

Sue on Assignment: Be My Eyes

Hi! She’s back! Lin said some of you have been interested in trying Be My Eyes but were having trouble. Guess what. I had trouble too!

Downloading the app and registering were not bad at all. For me. Remember I still have a lot of usable vision and I have some experience with technology. If your vision is very limited and/or if you are technologically challenged, get help. It will only take them about five minutes.

Anyway, I registered and got the email confirmation. However, the link in the email did not work. Spinney, spinney, spin but no go. I finally just went back to the app I had downloaded on my iPad. It worked!

My call only rang for about less than a minute. It was answered by a very nice gentleman named Ron. Ron was able to tell me the expiration date on my ricotta cheese, and he said nothing about views of my kitchen which really needed to be cleaned up. Ron is a good guy.

Ron also had no problems with submitting to a quick interview. It turns out my first call was also his first. He had signed up a little over a month ago. He said calls sound a tone on a number of phones and we, the users, get whomever can answer first. Ron had had a few other possible calls but he was driving and wisely did not answer.

Ron is in the States. Be My Eyes seems to match calls to volunteers in the same regions. I did not ask where he was specifically, but his accent was not far off from my own.

Ron volunteered because of his grandmother. She had Macular Degeneration as well. He also works for an eye doctor (sorry, I forget which kind) and he has seen a lot of people with serious vision issues.

All told, it was a very positive experience from this end. I was very pleased with how things went. The only glitch, as I mentioned, was getting from the email back to the app itself.

If you are able, you might want to read the piece that is included with the app. It seems this “microvolunteering” project is the brainchild of a man in Denmark, Hans Jorgen Wilber who needed a way to limit his dependence upon friends and family. He felt like a burden, constantly asking for help (or at least “constantly” in his mind). Although they first thought it would be difficult to get sighted volunteers, that did not prove to be the case. There are almost a million volunteers! They speak more than 180 languages and can be found in more than 150 countries. In other words, the chances are pretty good, wherever you are, they will be able to find a “Ron” just for you. Cool.

So, there you go. If you cannot go from the email to the app after you register, just go back to the app. No biggie. It worked just fine from there for me.

Thanks, Ron!

Written November 29th, 2018

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Tech Tuesday: App Spotlight – Be My Eyes

Have you heard about all the smartphone and tablet apps but think you have to be a ‘computer geek’ to learn how to use them?  I’ve got the app for you!  It’s called Be My Eyes.

The article Be My Eyes: Get This App And Help The Blind explains it well and has photos to show you what you should see on the screen when you use it. The article says, “Many iPhone users with visual impairments use a video FaceTime or Skype call with a friend for a brief session of sighted help—to find a hotel room door, for instance, or to help set the controls on a washer or dryer. But what if your friends or family members are not available when you need assistance? Or maybe you call the same person again and again, and you worry you might be overstaying your welcome?”

Be My Eyes pairs sighted volunteers with visually impaired people who could use another pair of eyes.  The app is free both to download and to use.  It’s available both for Apple (App Store) and Android (Google Play) devices – smartphones AND tablets.

After you download the app, you basically click on it and follow the instructions:

  • You’ll be asked to choose from:
    • I am sighted
    • I am blind
  • If this is your first time using it, you’ll be asked to create an account and be asked to allow the microphone and the camera to work with the app.
  • If you’re calling for help, you’ll be told that you are waiting for the first available helper.
  • You will hear the helper’s voice. They’ll hear yours and will see what your forward-facing camera is pointed at. The helper may ask you to move the phone or tablet a bit so they can see what you want. They may tell you to turn on the light on your device so they can see better.
  • The uses are really unlimited!
    • Do you want to know the instructions on a can of soup?
    • Do you want to see the expire-by date of something in the fridge?
    • Shopping and can’t find something?
    • Can’t find socks that match?
    • Did you drop something
    • More ideas here–>https://www.bemyeyes.com/get-started

Here’s are some GREAT videos with demonstrations.

Sue on Assignment: Altitude and AMD – Part 2

Hi, again! Back being a Mr. Wizard wannabe with little-known facts about AMD, your eyes, light and all sorts of weird stuff. This is kinda fun! I started looking for the stuff about altitude and AMD and stumbled upon more cool facts about UV light. Thanks to the National Weather Service, Flagstaff.

Ultraviolet – or “beyond violet” because the wavelength is even shorter than violet light, the shortest wavelength light we can actually see with our eyes – is generally reflected or absorbed by the ozone layer. However, there is plenty of UV light that gets through. This UV light can get through to us either directly or in a diffuse manner. Because ultraviolet, violet and their other, short buddy, blue, are so small, they get pushed around more than the other lights. The sky is blue because all the short-stuff rays are being pushed around up there. Violet and ultraviolet are there, too, of course.

Being small and doing all that bouncing around mean ultraviolet is more stealthy. It slips through in “sky shine”. It also slips through on overcast days. That means we need to be even more careful and wear our sunglasses when it is overcast.

And speaking of sunglasses, I discovered why they say sunglasses are good for ultraviolet and then a letter. Ultraviolet has parts A, B and C. UVC is the bad stuff. It is a danger to both plants and animal. 99% of ultraviolet UVB is absorbed by the ozone layer. The 1% that reaches the ground can potentially cause damage at the molecular level. UVA fades things and makes things brittle.

So that is the science lesson on UV light. Now it is time to move on to the effects of altitude. Or, more precisely, high altitude hypobaric hypoxia. Huh? You know, low air pressure, low oxygen conditions like you get on, oh, for example, Everest or K2.

Back in 2005 a group of researchers working in Nepal published a study in Ophthalmologica on macular changes at high altitudes. They only studied three people, all of them experienced climbers. All three showed macular changes for the worse. The authors concluded AMD folks should avoid high altitudes without proper acclimation.

In 2012 Grimm and Willman published a study again on hypoxia and retinopathy. They determined low oxygen can lead to the expression of vascular endothelial growth factor.

When you think about it, it makes sense. The eye is actually an energy hog. Energy production requires oxygen. If your eye is low on oxygen, it may try to get more by building more “supply lines”. That is what blood vessels are; yes, no? Our bodies are actually pretty smart.

From the little research I did, it would appear there are some reasons for concern when traveling in high altitude locales. However, provided you are not attempting an ascent of Everest, the effects are not so bad they cannot be mitigated.

It would appear good quality sunglasses are a must in such environments. It would appear from the research that proper acclimation to the altitude is also a must. Give your body time to become more efficient in getting oxygen where it needs to go.

As I have said numerous times, I am not a doctor. These are just educated guesses and precautions that I, as a fairly intelligent person, would take. Remember to check with your doctor for all medical advice. Your retinologist should be your guide.

(And if you are in Nepal, greetings! My puppygirls just realized you had Kukur Tihar, the day of the dog celebration, November 6. They think any people who have a day set aside to honor dogs are just great!) [Since Sue & I are both ‘dog people’ she thought it’d be cool to show a photo of a dog on that day. At my house, every day is The Day of the Dogs! ::smile::]

Written November 17th, 2018

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Sue on Assignment: How She Sees What She Sees

Hi! I was quoted in a local newspaper. Even got in the picture! [Lin/Linda: That’s Sue in the white top on the right side of the photo.] Nothing earth-shattering, basically I had been thrown to the reporter by one of my hip hop instructors. “Here. Talk to her!” I gave a little pep talk about how great the dance classes are and how civic-minded the studio is to sponsor charity events. You know the drill.

Anyway, I sent the link to Lin. “Look! I’m in the paper!” Lin comes back ASKING me to write a page! Wow. An invitation to preach -uh- talk about the benefits of exercise. You remember: better health, better attitude, even an anti-dementia weapon. I took up regular exercise at the age of 25 and I have never looked back. And we KNOW there is no greater zealot than a convert.

That is not quite what she wanted, though. She wanted to know why I stand where I was standing in the photo!

Uh…it’s my spot. That is where I stand. I am pretty much always a front row girl.

Does it help you see?

Yeah. That too.

Turns out Lin was interested in how I have adapted to my vision loss. How do I keep up my activities? How I dance so well? ….uh, not that. Basically how I follow along and don’t zig when we are supposed to zag. She wanted to know if I use eccentric viewing.

Eccentric viewing is a little trick that can help us AMD types quite a bit. It is natural to put your macula on what you want to see. In “normal” people, the macula is the area that gives us the sharpest vision. It would make sense to use it. The problem is, my macula has sort of disintegrated. Nothing to focus on what I want to see.

Enter eccentric viewing. With a little (ok, maybe a lot) practice you can train yourself to use a section of your peripheral retina to see what your macula no longer can. It won’t be as sharp an image as you may have gotten with your macula but at least it is an image.

Do I use it in class? Some. My main instructor introduces quite a bit of fancy footwork. I focus on him mid-body when I am trying to figure out what he is doing. I don’t care if his waist is blurry. I need to see his feet! They come through well enough in my peripheral vision. Looking directly at his feet would leave me clueless.

I use eccentric viewing walking. If I hear a car, there is no sense putting my blind spot on the road. Unless I want to get run down, of course! If I focus above the road, I can see the car in my peripheral vision. Thus, I avoid becoming roadkill for another day.

Same thing finding the dogs. Did one of my little darlings sneak out and is now running around the yard? Looking directly at her is a good way to make her “disappear”, right into my blind spot. If I focus above her, I may be able to apprehend her.

I say “above” because one of my “sweet spots” is on my lower, peripheral retina. This is not the same for everyone. You will need to play around with eccentric viewing and find your own.

We have done several pieces on eccentric viewing. Lin can put the links in at the end or wherever. I would suggest you read them and try to apply the concept to your own lives. How else are you going to learn those hip hop steps?!?

Written November 13th, 2018

Sue is correct, we’ve written quite a bit about eccentric viewing.  Here’s the link to all the pages on our website that refer to it.  When you do a search like this, the pages are in reverse chronological order (most recent at the top)–>https://mymacularjournal.com/archives/tag/eccentric-viewing

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Sue on Assignment: Altitude and AMD – Part 1

Before l get started on the requested topic, I want to give a quick update on what is happening with my eyes.

I went to see the new retinologist today. He is not the great man himself but he seemed okay. They completed the optical coherence tomography (OCT) and also did an autofluorescence test. Remember the autofluorescence test is used to find the atrophy. In other words, if you want to see exactly where your cells are in the process of dying, the autofluorescence test will show you. After being flooded with light, the dying cells glow.

After having the autofluorescence test, I saw the new doctor. When he shined his light in my eyes I could actually see my “dead zone”, my healthy cells and, glowing away, the cells that are dying. I know it was my lesion because it looked the same as the scan he showed me a bit later.

Sort of strange to actually see the demise of a part of yourself.

Anyway, I once again put in my pitch for inclusion in a trial. It is looking more and more likely I will be invited into the APL-2 trial. Of course, I was thinking that months ago and it never happened. The study was put on hold due to inflammation in the early trial subjects. Or, maybe I was never called because they just did not “like” me. Stranger things have happened.

Be that as it may, the girl who called later said she understood I was interested and would get back to me in a month or so. If I do get into a study, you will probably hear me screaming. Keep listening!

And now on to the topic I was asked to cover. I don’t have that many words left – I like to keep my pages to digestible chunks – so I have to break it in two installments. The topic was altitude and AMD.

My first thought was this: thin atmosphere means more UV rays getting through. That equals more oxidative stress. That means more damage. Right?

My research indicated I was right in my logic. Allaboutvision.com reports there are two places we have to be particularly aware of the sun. They are high altitudes and low longitudes. That is on mountains and near the equator. UV exposures increase 5% for every 1000 feet in elevation. Because we are a bit closer to the sun at the equator than we are at the poles, UV radiation is stronger there. In addition, the ozone layer, a protective part of the atmosphere, is thinner at the equator, So, if you live on Mount Chimborazo, Ecuador, the highest mountain nearest the equator (I love my search engine!), you are in a lot more danger from UV rays than you are in, say, Cleveland.

But don’t forget one thing that Mount Chimborazo and Cleveland have in common: they both get snow. Snow reflects UV rays four times as well as desert sand.

Low altitude. Not so close to the Equator. Sand instead of snow. Sounds like Phoenix?

Next: Sue on Assignment: Altitude and AMD – Part 2

Written November 15th, 2018

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Freedom Friday: Help Yourself and Others Remain Independent – Part 1

Lin/Linda: Freedom Friday was the second day of a trial run in the Facebook group of topic-of-the-day discussions to encourage members to participate.

Excerpts from the article How to Make Life Easier and Safer for Seniors with Low Vision.

The article ends with this but I think it’s worth reading it first:

“Seniors and others with low vision often worry that sight impairments will affect their ability to live independently. Put your loved one at ease by suggesting resources that will allow them to remain independent, and help them implement the tips above to improve their ability to complete day-to-day tasks on their own.”

Keeping an Eye on Visual Health

Caregivers can help keep tabs on a loved one’s vision by looking for an increase in:

  • Squinting or tilting their head when trying to focus.
  • Bumping into things or knocking objects over.
  • Discontinuing everyday vision-based activities like reading or writing.
  • Missing objects when reaching for them.
  • Falling or walking hesitantly.

If a loved one is still driving, an increase in accidents and risky maneuvers may also indicate visual changes. It is important to discuss these noticeable changes with your loved one and make an eye appointment to ensure early detection and treatment of any eye diseases and prevent lasting damage.

Helping a Loved One Accept Visual Changes

“Many older adults believe that there is no way they can cope with this loss since it affects almost all aspects of daily life,” Rogers explains. “But, caregivers and persons with visual impairment need to know that there is hope, and life, after vision loss.”

Tips and Products for Helping a Senior with Low Vision
Good Lighting is Key
  • Keep surroundings well-lit but be mindful of glare.
  • Use specialized lamps/bulbs to increase contrast and reduce glare and cover reflective surfaces when possible.
  • Ensure that appropriate lighting is provided for all activities your loved one engages in. For example, direct task lighting is best for things like reading, playing cards or crafting.
  • Consider a small gooseneck or clip-on lamp for these tasks.
  • Under-counter lighting is another type that works well for illuminating the kitchen and other larger work areas.
  • Avoid large discrepancies in lighting, such as a bright lamp shining into a dark room.
  • As task lighting is increased, the surrounding room lighting should also be increased.
  • Keeping lights on during daytime hours helps to equalize lighting from both indoor and outdoor sources.
Take Steps to Minimize Fall Risks
  • Use nightlights in bedrooms, hallways and bathrooms to reduce the risk of tripping and falling at night.
  • Eliminate clutter and remove hazards such as throw rugs and electrical cords.
  • Consider replacing or relocating short or difficult to see furniture, such as a glass coffee or side table.
  • Create wide, clear and level walking paths that lead to all areas of the home for easy and safe navigation.
  • You may have to reposition some furnishings to make the home easier to navigate. This can be disorienting initially, so make sure to provide your loved one with extra assistance getting around until they have memorized the new layout.
  • Larger-scale rearrangements may be inadvisable for some seniors, especially those with memory issues.

Next: Freedom Friday: Help Yourself and Others Remain Independent – Part 2

Tips & Tricks Thursday – The Holidays: General

Tips & Tricks Thursday was the first day of a trial run in the Facebook group of topic-of-the-day discussions to encourage members to participate.

With the holiday season soon upon us, I did some research about how those with visual impairments and those who are friends and family can help.  Here are the links to the full articles. Below I’ve pulled out some of the ones I think are most helpful. The number at the end of the line refers to the article it was taken from.

  1. Top 10 Holiday Tips for Visually Impaired Seniors
  2. Thanksgiving Made Easy for a Single Visually Impaired Hostess
  3. Celebrating the Holidays Alone? Three Tips for Keeping Your Spirits Up and Enjoying Yourself
  4. Navigating the Holidays with Low Vision
  • When visiting friends and family, bring along a flashlight to illuminate dark walkways and entryways. #1
  • If company visits, ask them to remember to close cabinets, not to leave doors ajar, and to respect home organization. #1
  • Going out to eat with friends can be fun. Organizing your cash beforehand can reduce confusion when paying your bill. Keep denominations in separate compartments of your wallet or have a system or folding bills for identification. #1
  • Setting the Menu: After each invitation, I asked, “What is it that you have to have to make it a Thanksgiving dinner?” “Pumpkin pie? Good. You bring the pumpkin pie. Sweet potatoes? Okay. You bring the sweet potatoes. Collard greens? Seriously? Okay, then you bring the collard greens.” I cooked the turkey, only because it made sense to use my oven. #2
  • Practice gratitude. Even though things may not be perfect in your life- it rarely is for anybody, make a list of all the things you are grateful for or that you appreciate in your life. Start with the basics- food, shelter, clean water, clothes, a bed to sleep in, a pet, television, internet, music… List as many things as you can and add at least one thing to the list every day through the end of the year. When you notice and acknowledge what you do have, you shift not only your attention to the positive, you also shift your attitude and elevate your spirits so you’ll go into the New Year with genuine enthusiasm and hopefulness. #3
  • Lighting when visiting someone else: First, speak to your host about their lighting situation. If they are able to add extra lighting to your room or other areas of the house you will be using, then that might be helpful. Floor lamps can be easily moved for temporary lighting. You may also want to consider packing a few extra night lights to help find your boundaries in hallways and bathrooms. And try to reduce disorienting glare from TV or computer screens by turning them out of the way of direct sunlight. #4

 

Sue on Assignment: Getting Food to Come to You

Two and a half years ago I was newly visually impaired, not driving and had a husband in rehab with two ruptured discs. I had yet to succeed in arranging transportation. In true fashion for many of us, I was catastrophizing. How do I get to the store? I am going to starve!

Fast forward two and a half years later.  Guess what. I am still here. While I am about five pounds lighter – the result of not eating school lunches and teachers’ lounge goodies not to mention not being able to go for Chinese take-out several days a week – I am not emaciated and definitely not starving.  Things worked out just fine.

At the time I was in my “crisis” about starving, there were only a few options open. I could sign up for Meals on Wheels. I could get delivery pizza. There were the old standard door-to-door vendors such as Schwanns and there was Amazon Prime Pantry or Walmart groceries, both essentially by mail order. I decided to get a couple of “care packages” from Amazon Prime to hold me over. The problem, though, was they were only non-perishable items.

That was then. This is now. The food delivered to your home business is booming. If you are not able to prepare meals you can still get Meals on Wheels or delivery pizza. If you are able to cook for yourself there are now probably dozens of options.

The first ones are what I consider to be the “gourmet cook” options. Those are the ones that send you all of the pre-measured ingredients and directions for putting them together.  Some examples would be listed in Top 10 Recipe Delivery Services on the web. Be careful of the pricing on these, though. You have to sign up to get price quotes and some of them start “as low as $7.99 per meal”.

Then there are the grocery delivery services. Amazon Prime Pantry continues to deliver non-perishables to your door. It is still by parcel services and not same day delivery. With Amazon Prime Fresh fresh meats and vegetables are available in some areas, not mine. There is also an additional monthly cost that might be hard for people on a tight budget.

In recent months many of the local grocery chains are getting into the home delivery game. Local Walmarts around here are hiring people to shop for us. [Lin/Linda: in many areas, both deliver or pickup is available.] Order online. That person fulfills your order and someone delivers it the same day. Target offers the same sort of service [same-day delivery]. Also Giant [through Peapod delivery service which delivers from other stores in various locations].

Then there are the shopping services. Services such as Instacart can shop for you in a variety of places and deliver it to you. They are not in the local area here and they wanted all my information before they gave me an idea of pricing. Nope.

Moneycrashers.com has a good article on the pros and cons of home grocery delivery services. They reported Giant Market charges $6.95 for delivery of orders more than $100. They charge more for orders less than $50 and even more for smaller orders. In other words, it would not be cost-effective to ask them to run you over a quart of milk.

I have run over my self-imposed 500-word limit here, so I’m going to wrap this all up by saying I have yet to starve and barring any unforeseen circumstances, you will not starve either.  Home delivery grocery services are just one more way to help us maintain our own homes and independence.

Written November 3rd, 2018

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Sue on Assignment: Independence

Back again and this time I was “invited” to be my irritatingly optimistic self!  Well, maybe not that far, but Lin said there is a lot of understandable trepidation out there and wants me to speak from nearly three years past “legally blind.”

Yes, I am legally blind and, to paraphrase Mark Twain, the reports of my disability are greatly exaggerated. The past three days I have taken three exercise classes, walked the dogs, did all of the laundry, did dishes, made a pot roast (it was yummy, but I take no credit for that. I am at best a basic cook.) and did the vacuuming. I also wrote two psychological reports and several therapy notes and watched about three hours of TV on my iPad.

What could I not do? Drive, see faces at more than two feet and read without assistive technology or my nose on the page. Oh, and open the pickle jar.

Within certain parameters, I have independence, whatever that is.

What is it? The Oxford Dictionary says independence is the state of being independent. (Do you ever wonder about passive-aggressive tendencies in lexicographers?) Independent is the state of being free from outside control, not depending upon others for one’s livelihood and capable of thinking for oneself.  There is also “not depending upon something else for strength or effectiveness.”

I have my own funds. To the chagrin of many around me, I am definitely capable of thinking on my own. Am I free from outside controls? No, I doubt anyone can really say that. Living in society requires we be subject to outside controls. That leaves having my own strength and effectiveness and being able to do for myself. There is a qualified check in the positive column there.

Through the grace of God, great people, fantastic technology and general cussedness on my part, it is going to be a very long time before anyone is hauling me off to a care home.

I am capable of just about everything I need to do and I have support for the rest.

Transportation?  I have the transit company, a near constant frustration but it generally gets the job done.  I have people, some of whom  I never thought would help,  going out of their ways to take me places. I have become a community project!

And no, I don’t think of myself as a huge burden any more (just a little one). Why? Because people want to help and it makes them feel good.

Reading is accomplished with magnification and audio recordings. If you are legally blind, audiobooks can be free.

Seeing faces is a problem. I am starting to get people trained. And again they can be so sweet. I spontaneously gave a casual acquaintance a hug yesterday. She sought me out across the room and was within inches of me so I could see her. People try so hard! Or at least they try if they see you trying.

Somewhere I read people with sight loss are more likely to become depressed if they do not learn to use available technology and if they have additional disabilities. It would appear the lesson is if you use your resources and avoid the debilitating influences you can avoid, you can maintain your independence. It might not look exactly like it did before, but things will be pretty close. You can get there, you can read and you can see close and/or magnified faces. You are on your own with the pickle jar. I can NEVER open those!

Written October 29th, 2018

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