Sue’s Musings

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.

Happy New Year 2022!

In real time it is Christmas Eve, 2021. Next week at this time we will be ushering in a new year. 2022 will be here and 2021 will be done. Thank God.

I dare say 2021 has stunk! I have lost parts of my life I value. COVID has tried its best to demoralize me and defeat me. Come the end of March, I will have been working from home for two years. We closed the physical office the third week of March 2020. I miss my colleagues. I miss the change of scenery.

My transportation – less than desirable to begin with – has become even more unsatisfactory. We are now “allowed” to grocery shop two days a week. With no spare drivers, they turn into pumpkins at 4:00 pm. They also no longer work Saturdays. I no longer have the option of going to the gym, and the work-outs I do get are on Zoom. While I am glad to at least have those, they do leave a bit to be desired. It seems the only “legitimate” place I can go on transportation is the doctor’s office. Great fun.

While I snuck in a couple of adventures in the fall, more than local travel has been adversely effected as well. I had hoped to see more of the world before I went too terribly blind. How am I going to see the world when the pandemic has me sitting at home?

Although I could go on, I will spare you my pathetic whining. Suffice it to say, 2021 has been pretty stinky and the longer I live in these conditions, the more frustrated I get. The pandemic and pandemic restrictions, while necessary, have dimmed my normally sunny outlook. I am pretty sure many feel the same.

COVID has been limiting our lives and truncating our horizons. Or at least so it seems. And Covid is not the only debacle/ disaster of 2021. But perhaps not all is doom and gloom. Perhaps there are some areas in which we are actually being provided with even wider horizons.

Behind the scenes, in vision research, they are working hard to provide us with more options that will improve our lives as visually-impaired people. Even casual scanning of research titles show us they are continuing to make progress in such areas as gene therapy and stem cells. Recently, they approved a port delivery system (now called Susvimo) meant to significantly decrease the treatment burden for those with wet AMD who required monthly injections.

This past spring, I completed my term in the third phase of the APL-2 trials. I then moved into a long-term study of the same medication. How will this medication work for people who are on it for years? I am part of the group that will allow them to find out.

Oh, and if and when APL-2 is approved by the FDA? It will be the first treatment for dry AMD in the world. Cool.

I guess what I am saying with all of this is 2021 was a pretty horrific year. For many of us, our vision loss actually became one of the least of our worries!

Yet, with all of this nonsense happening, it appears medical research on age-related macular degeneration has barely missed a beat. Progress was made.

The more I reflect, the more I am reminded of Pandora…and no, I am not talking about music or jewelry. I am talking about that pesky, little girl who, in modern versions of the tale, could not stand to not know what was in the box. When her elders were not paying attention, Pandora opened the box and all proverbial hell broke loose. Fire, flood, pestilence, plague, war, crazy storms and famine were all released.

Pandora looked around at what she had done and was devastated. She desperately looked in the box. Maybe she could fix this? In the box, Pandora found there was still one thing left, hope.

The moral of the story for me is this: I don’t expect 2022 to magically solve all our problems. I still believe we are in for a bumpy ride. Things are out of the box. However, like Pandora, I have hope.

One of my reasons for hope is vision research. Vision research is going at a breakneck pace.

I still hope – believe – a cure for AMD will be found in my lifetime. After all, I say this is the best time in history to be going blind for a reason!

So, welcome to 2022! Fasten your seatbelt and hold on tight! …and when I find Pandora, that little lady is going into time-out!😜

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!

Daydreams About Driving – Part 1

I gave up driving over five years ago, but that does not mean I don’t miss it. In the past few days I have been daydreaming about going to visit a friend on a small Caribbean island. When I inquired about how I could get around when she is working, she said I could rent a golf cart. Could I actually drive a golf cart around the island?

Pitiful to say, but I got all excited with the idea of being independently mobile. I got almost giddy with thoughts of driving myself to the store and to the beach. How fast can a golf cart possibly go? I certainly could drive a golf cart!

The next thought was wondering if I had given up driving too soon. Maybe I could have gotten another year behind the wheel.

Although dry age-related macular degeneration is not supposed to act this way, it seemed as if I lost my second eye overnight. Would I have decided to give up driving so quickly if my vision loss had been more gradual? When and how do we know to stop driving?

I found an article from Caring Home entitled Seniors and Driving : A Guide. The statistics quoted in the article are a few years old (2015) and they are scary. In 2015, 14 million Americans were in an auto accident caused by an elderly driver and 19 elderly drivers were dying in an accident every day. This does not assume every one of those elderly folks was visually impaired but certainly some were.

We slightly older folks all have good ideas of what factors make it harder for us to drive. In addition to our vision loss there are things like chronic health problems, hearing problems, and drug effects and drug interactions that can limit our ability to drive safely.

But since this is a blog on AMD, let me focus on vision for just a second. The article quotes Elizabeth Dugan, author of The Driving Dilemma, who says 90% of the information that is needed to drive safely comes to us through our eyes.

And what happens when we are not getting that information? How do we know when it is no longer safe to drive?

The article suggests the police and the insurance company may notice before we do. Are you getting traffic tickets when you never had any before? Have those “little” fender benders resulted in a jump in your insurance premiums?

And even if you have not had any fender benders, how about scratches and dings to the car? In the months before my mother and her siblings took my grandfather’s keys, there were multiple “mystery” scrapes and dents on his car that my grandfather always insisted had just appeared out of thin air.

About that time I was a teen with a job but without my own car. I was reluctant to have my grandfather drive me to work and white knuckled it all the way. The man was scary behind the wheel, and I was always grateful to get there alive.

And speaking of reluctance, have you been recently reluctant to do the driving? Quite frankly, have you scared even yourself a few times?

Lastly, the article talks about your tension when you are driving. Do you lean forward and strain to see? Do you feel overly tense and come home exhausted? Does driving seem like a chore?

If these things are happening, it might be time to think about giving up driving. But don’t want to give up driving? There might be a reprieve for a little while. Next, I will review some of the driving rehabilitation services that may be available to you.

Next: Daydreams About Driving – Part 2

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!

Forward Through Adversity

As I identified this page with a date, I stopped to reflect on how trying and tragic this year has been for many of us. COVID-19, fires and hurricanes not to mention a crazy political scene and a recession that is looking more and more like an economic depression have all managed to sweep down upon us in less than a year, 365 short days. It is no wonder people are getting ready to hang it up!

Added to all the chaos in the common world, the great majority of people reading this page also have a more personal, potential, crazy-making circumstance. Some of us are losing sight due to macular degeneration. How do you keep going forward with all that?

I was told there is interest in learning something about going forward in adversity. People want to know how to keep moving when they have been smacked down. I was told people would be interested in a primer on resilience. OK. Let’s try this.

To me, resilience is a rubber ball. You throw it to the ground, and it bounces higher than it was before. That is, it does that in ideal circumstances. For a rubber ball, the circumstances include things like the material the ball was made with and how much air has been pumped into it. But what is resilience in people and how do we promote it?

The American Psychological Association (APA) in a page aptly called Building Your Resilience (2012) defined resilience as the process of adapting to adversity in all of its form. The APA and I agree: resilience can include not only bouncing back but bouncing higher and with even more force, attaining personal growth in their terms. The APA sees resilience as containing empowerment and growth.

By this time, I can imagine some folks are complaining. Not only does she – and the APA! – expect me to survive this mess, they actually expect me to come out better! OMG. Really?

Nope. Not really. There are no tests in this “course”. However, should you happen to become a better version of yourself sometime during this sh**show that has been 2020, let people know. We need inspiration.

So, back on track, how to foster resilience? The APA does not put this caveat on this list, but I am going to. Like many other things in life, building resilience is easier when you start young. Many of the habits and conditions that have allowed me “bounce” were acquired decades ago. This does not mean, however, they are unattainable at an older age. Keep trying!

Taking these slightly out of the APA’s order, I want to start with what they call fostering wellness. The Romans said it thousands of years ago. A healthy mind almost always dwells in a healthy body. While there are exceptions to every rule, people who are physically fit, eat well, sleep well and avoid mood-altering substances cope better. It is also a good idea to take care of those health problems that you can. While I do not have the reference in front of me, I have seen that the visually impaired elderly who have other disabilities do not do as well as those who do not.

The APA also mentions mindfulness and managing stress. We can do a page on mindfulness. The APA also suggests the management of stress rather than trying to eliminate it. This circles us back to everything in moderation, especially drugs and alcohol. [Lin/Linda here: About mindfulness, in the meantime, I found a whole website about it! It’s ‘mindful. healthy mind, healthy life.’]

Building connections with others is a great way to build resilience. Not only do connections remind you that you are not alone and provide you will sources of assistance, they also give you ways to assist others and get the focus off of yourself.

Finding purpose is a great way of building resilience. With my clients, I like to quote Viktor Frankl who said that when we have ‘a why’ we can survive ‘any how.’ Get to work making lemonade out of your lemons. Is there something good that comes out of your suffering and will give that suffering meaning? Embrace it.

Lastly here, the APA piece promotes a positive attitude including acceptance and hope. The Buddha taught desire is the root of suffering. Wanting what we used to have, what we don’t have and what we will never have just leads to misery. It does not help resilience.

From personal experience and my DBT background, I would like to add one more resilience factor and that is mastery. Knowing you have succeeded before is a positive factor in believing you will succeed again. Do things that make you feel competent.

That’s about it for now. Hopefully you got some ideas that will make it easier for you to bounce through the rest of this mess. Good luck!

Written December 7th, 2020

Next: I used to say ‘coming soon’ but we’re not as active as we used to be here at my macular degeneration journey/journal

Catching Up – December 2020

Hi. It has been absolutely months since I wrote a page for this website. With COVID-19, my workload as a therapist has expanded. In addition to my day job, I was asked to do a side gig writing for a “health community.” Add to that my “doom scrolling” of online news outlets to check on the pandemic and election, and I have managed to let a few things slide.

As some of you know, Lin, my friend, editor, webmaster and purveyor of many good things, has had some serious health issues that are hopefully mostly behind her now. Her reasons for being m.i.a. from the website are much better than mine. [Lin/Linda here: thanks for the kind words, but we both have perfectly good reasons for not being here – they’re just different. ::smile::]

All by way of saying, sorry and making a pledge to do somewhat better. Not that we are going to present the quantity of material that we used to. Come the end of January, 2021, I will have been legally blind for FIVE years! How time flies when you are having “fun.” After that amount of time, I have adjusted. In some ways, being visually impaired has become old hat. I don’t have the angst I once had and my life is pretty routine. In other words, I can be really boring! And, yes, being visually impaired can be boring, too.

That does not mean, however, that everything is boring about my geographic atrophy. A few of you may know of my quest to some day regain my sight. Yep. Cockeyed optimist that I am, I have every intention of someday no longer being legally blind. The first step in my diabolical, master plan was to get into a clinical trial. That goal was reached about 18 months ago.

Since that time I have been going monthly for injections of a trial drug. The earlier results of the study suggested this drug, APL-2, slows down the rate of degeneration by about 30 to 40%. If things continue to progress at the rate they are now, it is not inconceivable that the first, clinically proven treatment for geographic atrophy will be on the market by 2022.

And it might not even be “my” drug that wins that race to be the first treatment for GA. The concept behind “my” drug – interfering with the complement cascade – is also the underlying concept behind other treatments in the pipeline. Those drug trials are doing very well also.

The second step of my diabolical plan was to get into a long term study that would hold me over until step three was ready. I am supposed to achieve inclusion in a long term study in the spring. The study is to determine how years of use of the drug affects my eyes. Will I develop side effects? Will the drug continue to work as well? Worse? Better?

I am willing and anxious to get into that study because it is a stepping stone to my next objective. That objective is a study that currently only exists in my feverish, little brain…and maybe the brains of a few researchers. That study will see how well transplanting RPE stem cells into eyes treated with the drug works.

After that? By that time I am speculating they will be ready to transplant photoreceptor cells and get them to connect to the optic nerve. Endgame. We see again. [Check out the Audacious Goals Initiative of the NIH NEI (National Institute of Health, National Eye Institute). That’s what they’re working toward.]

At least that is my diabolical plan. Step one will be completed and step two will start in the spring. I love it when a plan comes together.

If you are ready and able to join me and thousands of others as “lab rats”, if you are ready to become part of the solution, please volunteer for clinical trials research. Remember, this really is the best time in history to be going blind.

Written December 1st, 2020.

Wolf Pack and The Letter A!

It is spring and the “quackers” are here in the northeast…as well as lots of other places, I would assume. I am not talking about the ducks and the geese, although they are back in our skies and waters. I am not even talking about me, back and planning to write a lot more this spring if the craziness abates a little.

No, I am talking about the quacks, charlatans and snake oil salesmen who seem to haunt AMD and tease us with their “miracle cures”. You know, the “secret” discoveries that only they have made. The things the “short sighted” people at the FDA chose to ignore or denounce. The “100% cures” they want to sell us so that we can have “hope”.

I get very angry looking at the ads on Google. I don’t like to think of myself as a prey animal for these “people” ( and I use the term loosely). I prefer to be the predator. I like to think of myself as the wolf. The wolf scans for the best target for the hunt. He evaluates his odds of catching and killing his prey. He works with the pack on a common objective. The pack is persistent. The pack is relentless. They understand a successful hunt does not always mean a quick and easy kill.

I would like to think we are the pack. I know we are hungry for treatments for AMD. I would like to think we are cunning enough to pick good targets in our hunt for these treatments. I want to believe our hunger will not lead us to be deluded by some “quacker” offering empty promises …and a quick buck for himself.

To this end I found an article, excerpts of which I would like to share. The article is actually a book chapter from 2018. The title of the chapter is ‘Physical treatments for age-related macular degeneration’ and the book it is from is entitled Treatment for dry age-related macular degeneration and Stargardt disease: a systematic review. The authors are Waugh, Loveman and Colquill. It was published in the United Kingdom for the Secretary of State for Health and Social Care. Sounds very official!

Waugh and his colleagues scoured the profession literature looking for promising research. They found a lot of bad science and a couple of treatments that were tested using good science and may have promise.

Going alphabetically, the first one reviewed was acupuncture. Looking over 37 years of research, spanning 1970 until 2007, the American Academy of Ophthalmology determined there was insufficient evidence to justify its use.

The studies found had used bad science. For example, they had not randomized their subjects. Without subject randomization, you have no way of knowing it is your treatment or some other factor that is responsible for the changes.

Waugh et al took 2008 to 2018 and looked at that research. They found two studies. Both of them were done using bad science. In one case, they did not offer their statistics for review. In another, there was no control group for comparison. Good science can stand up to peer scrutiny. In other words, if you don’t share your statistics, you are hiding something. No control group means the changes could have happened on their own without the treatment, and you have no way of knowing.

The bottom line on acupuncture for dry AMD treatment was thumbs down. In nearly 50 years of study, nobody has been able to prove it works. All of the “evidence” has been hearsay.

Ok, wolf pack, the hunt is on! To the letter B next time.

Written March 13th, 2020

Next: WOLF PACKS AND THE LETTERS B & L

Happy Anniversary 2020 – Celebrate the Successes!

February 12, 2016, was the day I was officially declared legally blind with dry age-related macular degeneration. In real time that was four years and three days ago. February 12th was a Wednesday this year, a work day. It was literally and figuratively just another day at the office.

Not a day to stay home and pull the covers over my head. Not a day to cry. Just another day. To go about my life, my work, my play.

Perhaps even weirder to some, Lin sent me an email that started out “Happy Anniversary!” Celebrating my vision loss? Should I be offended that she is congratulating me on going centrally blind? Nope. I did not take it that way.

Once again, every cloud has a silver lining. Every challenge contains within itself the opportunity to surmount it. To adapt. To change. To grow.

I took the “happy anniversary!” as an acknowledgment of my successes, her successes and yes, your successes as well.

We’re going on a bear hunt. Can’t go over it. Can’t go under it. Can’t go around it. Gotta go through it.

Slogging through swamps? Check! Climbing mountains? Check! Stumbling through pitch-black caves? Check!!! Metaphorically speaking, we are doing it all and coming out the other side only slightly the worse for wear. That deserves to be celebrated!

I have been told I am an inspiration, a role model, etc. Piffle! I am a stubborn, somewhat entitled only child who does not want the fun to end. There is no way age-related macular degeneration is going to ruin the party.

So, I move forward. I accept. I adapt. I find another way. I fall flat on my face, laugh, pick myself up and go on…look out! Don’t fall over that! You are right behind me…or maybe you are ahead; aren’t you?

Either way, we are on this journey together.

Sometimes we lead. Sometimes we follow. Sometimes we are carried and sometimes we carry others. Just the same, we are moving forward and that is something to celebrate.

Some people do not feel I am on the same journey that they are. In the past four years (and three days!) I have gotten pretty far down the road. Some people don’t see themselves as ever being where I am now. They don’t believe I remember the beginning of the journey.

To the question about my remembering: yes, I remember, but it is not a traumatic memory. In psych speak, I have integrated it into my personal narrative. It no longer contains the pain it did.

To the question – implied – if you can get where I am now, I would say “Yes”. Many of you can. If you cannot find anything you need from me, lean on other group members. Ask them for guidance. Forge your own path. Just keep on moving forward.

So, there you are. Happy anniversary! Celebrate your successes. Remember how far you have come. Success is possible.

Written February 16th, 2020.

Next: Filling the Gaps

Happy New Year 2020!

Hello and Happy New Year to you all!

It was February 12 , 2016 that I was given the news my second eye was “gone” as a result of dry age-related macular degeneration. It was that date that I was declared legally blind. You can do the math as well as I can so you know it is coming up on four years that I have been on my journey through sight loss. Hard to believe.

Time has passed rapidly. That is because Lin and I have been busy. Very busy! We started out with this blog. Journaling for my own mental health as well as the edification of others worked well.

It fact, for me, it worked so well I worked through my angst and became, well, shall we say, hard for the new folks to relate to. Consequently, I have been on semi-permanent hiatus here for a number of months.

What to say about that? How about this:

I hope for each of you to come to the point that I am at now. I hope for the pain and panic to end and for sight loss to become something that has enhanced your life almost as much as it has diminished it. Maybe even enhanced it more.

I believe Lin will agree my sight loss has enriched our lives quite a bit. While I did the “easy” work of going centrally blind, Lin rolled up her sleeves and got down to business. Her Facebook group is a minor phenomenon with several thousand members and a volunteer staff of assistants doing research and helping with the group in many ways. The Facebook group was the second thing that happened these past four years. It is something Lin is understandably proud of and I am proud of her. [Lin/Linda: Ah, shucks, thanks Sue!]

In the past six months or so, Lin and I started another endeavor. We were asked to write for Health Union. We saw – and see – this opportunity as a way to reach another audience of visually impaired people. Another way to help and support. Of course, I also saw it as a way to accomplish a secret ambition. I always wanted to be a paid author and now I am! Hot dignity dog!?

Another big accomplishment this year has been my acceptance into a clinical trial. Helping to advance medical science towards a treatment and eventually a cure for dry age-related macular degeneration through being in a trial became a goal early on in this journey. It is gratifying to have finally been chosen.

That brings me to another hope for the future. I hope that the time for newly diagnosed dry AMD patients being told there is no treatment and no cure is going to come to an end. Soon.

Where from here? The new year we are entering is 2020. It is the perfect year for a focus on vision and they are doing just that. While the initial thrust is on curing preventable vision loss, the definition of preventable is broadening every day. Regenerative medicine in the forms of stem cells and gene therapy will soon be a reality for many. New medications are slowing the progression of a number of eye diseases. This is our time, our fight, and it is exciting to be part of the endeavor.

Lin and I would like to thank you for enriching our lives over the past four years. When we started this journey, we had no idea things would turn out to be as gratifying as they have been. It has been you who have helped us turn my lemons into lemonade. You who have helped make so many good things possible. For this, we thank you.

Welcome to the year 2020 when exciting things will be happening. And remember, this is the best time in history to be going blind.

Written 12/28/2019

Next: Happy Anniversary – Celebrate the Successes!

Expect More, Not Less

Recently Lin told me about the “expect less” conversation that went on in the Facebook group. I can’t relate. [Linda/Lin: this is actually from a post where there was ‘advice for living’, and it included this phrase. It kept bothering me.]

Just like those people who tell me that they don’t expect anything and then when they get nothing they are not disappointed. I can’t relate there either.

I have lived my life aiming high. Often ridiculously, absurdly high. If I don’t get the grand prize, I often get a lesser one. That is still rewarding. Trying hard does not guarantee success but not trying almost always guarantees failure.

There are esoteric schools of thought – or at least we here in the West consider them to be esoteric – that say people possess “magnets” in themselves. The energy in these magnets attracts related energy in the Universe. Put positive energy out and you get positive back. Negate attracts negative.

Maybe, but I like Henry Ford’s take on all of this. To quote: “Whether you think you can, or you think you can’t – you’re right.” We try and do and get pretty much exactly what we expect. Expect less and you try for less.

No thank you.

Now, there are those of you who are sitting there and saying I am wrong. You are saying there are things you can no longer do because of visual impairment. You are saying it makes sense to expect less because you cannot do or be what you used to do or be. Fair enough. But how about if we think about expecting things to be different rather than lessened? Different can still be full and good.

What can you still do? What do you now have time to try that you were not able to try before?

Visual impairment does not only close doors, it opens windows. Go get a ladder and climb on in!

Expecting things to go your way does not always work perfectly. There have been times that, try as I might, I could not attend an event or in general, get circumstances to conform to my wishes.

Oh well…some you win. Some you lose and some get rained out. But these failures were due to circumstances, not a failure of will. Trying my damnest and not succeeding due to the circumstances somehow sits better than not trying and settling for less just because…well, what? Because a visual handicap is supposed to somehow make life less ? Is that truly what you believe?

I am coming up on four years of being “legally blind”. My life is different. My life is not less. Almost daily I am amazed by the kindness of people around me. Almost every day I am amazed by the wealth of opportunities that present themselves. Quite frankly, if my life were any “more”, I could not keep up! Why do these people and opportunities come my way? I believe it is because I am open to them. I actively seek them out. I expect more, not less.

Circumstances change. Vision loss closes door. It also opens windows. Go get a ladder and climb on in!

Written December 23rd, 2019

Rage Against the Dying of the Light

“Do not go gentle into that good night,
Old age should burn and rave at the close of day,
Rage, rage against the dying of the light.”

Dylan Thomas
1914 – 1953

Brain Pickings refers to that poem as a “rapturous ode to the tenacity of the human spirit”. Yep. That’s what I wanted.

When I got home from my cruise there was good news and bad news. The good news was a girls’ weekend – the first one in several years – was in the works. The bad news was that getting together had developed an urgency. One of us had been diagnosed with a serious condition.

I have referred to my delightfully enjoyable, misspent youth on different occasions. These people were some of the players on that stage. These are some of the people who have weaved in and out of my life for over 50 years. These are the people who, when you say “I need you”, drop everything and come.

This weekend we went.

Getting there was not easy. For some strange reason, a bus trip from here to a point 80 miles away was scheduled to take nine hours! I asked around. I begged. I negotiated. I found myself rides that would not have me on a bus all day. I would have taken the bus if I had to, but the Universe decided to cooperate with me. Thank you.

I was afraid it would be a solemn weekend, but I underestimated the people I was meeting. We went to a good restaurant. We went to a wine tasting party. Santa Claus was there, and we sat on his lap – three at a time. We got matching pajamas and had a slumber party.

Metaphorically speaking, we danced on the deck of the Titanic and it was good.

Why do I tell you this? Probably because I came to several, simply profound conclusions that you might wish to ponder yourself. Thoughts like…

Life is short, but it does not need to always be brutal.

When the going gets rough, drink wine, eat brownies and have a slumber party!

Surround yourself with the people and things that you love.

Take your good memories out and play with them regularly. Be sure to share those “toys”.

Laugh. Life is the funniest, weirdest thing to ever have happened to you. Might as well appreciate the humor.

And don’t forget to do this often and do it soon.

We are making plans to all get together again in the spring. Adversity has a way of showing you what is important. It focuses your attention. It makes you realize you may have been neglecting the things you value most. If it is important and you want it, do it now.

What does this have to do with vision loss? Nothing. Everything. I was the only one who has vision loss, but I was not the only one dealing with a physical problem. We helped one another. We commiserated together. We contributed in the ways we could. Everything balanced out.

In one other way we have been fortunate. Our alarm sounded at the beginning of the end, not at the end itself. We have time to make a few more memories.

“Do not go gentle into that good night,
Old age should burn and rave at the close of day,
Rage, rage against the dying of the light.”

What is important to you? If it is important and you want it, do it. Do it now.

Written November 24th, 2019

Next: Happy New Year 2020!

Good People Do Have Vision Loss

Hi! I am still teaching DBT. I am, in fact, coming towards the end of a 24 week marathon of teaching. My “senior” colleague and I decided to switch the modules we teach so the new trainers we have could be exposed to all four modules. Thus, I am not all that familiar with interpersonal effectiveness. That is my current focus.

Today I am teaching myths, cultural myths, national myths, family myths, personal myths. A myth is a story or legend that holds us together and tells us what “people like us” should do and believe. The problem with myths is they may not reflect the current reality. They may not reflect our wishes and desires.

I was looking for something to add to my lesson today and found “Good Families Don’t…” a children’s book by Robert Munsch. You can listen to it at Robertmunsch.com. Dang cute, Quickly here, a little girl finds a fart on her bed and is told good families – and Canadians- don’t have farts. Therefore it must not be so.

I just looked and I realized I have tackled myths about vision loss several times before in these pages, but I would like to do it one more time from a possibly different angle. Do “good people” have vision loss?

My guess would be resoundingly in the affirmative to that question. Good people do have vision loss. Good people do have all sorts of issues they did not cause. Vision loss is not a moral failing. As a disease with genetic roots, age-related macular degeneration is not a personal punishment. It is simply the luck of the draw, a perfect storm, call it what you will. Vision loss is not something we should be ashamed of.

Just like farts, good people do have vision loss. It is sort of silly to deny the obvious.

The problem with myths about who we “should” be is they often, as stated, fly in the face of reality. Another problem is this: operating under the influence of myths does not always serve us. Does believing all the “common knowledge” about vision loss really serve you? Is it helping you reach your goals? Are you reaching superficial, short-term goals but failing to reach more important, long-term goal because you believe these myths? Is believing what you do about vision loss causing you unnecessary stress?

Myths can stand in our way. The conclusions we come to based on those myths can also stand in our way. Do you believe people will think less of you? Do you believe others will somehow see your vision loss as a moral failing? Do you think you have somehow failed? Do you believe you are incapable because the myths tell you “blind people don’t…” do those things?

Challenging myths is an important thing to do. Where is the evidence you are somehow unable or unworthy? I suspect you won’t find it. Good people really do have vision loss…just like little girls from good, Canadian families have farts.

Written November 28th, 2019

Next: RAGE AGAINST THE DYING OF THE LIGHT

Rocking and Rolling

Allow me to begin with a disclosure: I can get seasick in a bathtub. Water is supposed to be my element (Cancer the crab) and I love it but when it moves me around too much, my entire system protests. Ergo, if I have to leave abruptly, you will know why.

Yes, I am cruising and yes, there is a Nor’easter raging out there. We sat in port in the Hudson River an extra 13 hours before venturing out into this mess. The captain decided discretion was called for and waited.

Sitting in the harbor, I really noticed my vision loss. I missed things. Big things. My husband had to point out the Statue of Liberty and the Staten Island Ferry. How could I miss the Staten Island Ferry? It’s ORANGE, for crying out loud.

They just blended in. Sat in my blind spot. What can I say? It is what it is.

Using the camera helped. Either using an iPad or a camera with a screen allowed me to “see” what I was looking at. I don’t always like to use technology to “see” my world. It reminds me of my mother-in-law who says she never needs to travel because she has seen everything in the movies or someone who says he has experienced something because he has seen it on TV. I feel those are pale reflections of our world. However, if I want to experience it, I have to do what needs to be done. At least this way, I can experience the sights, sounds, smells and…uh, movements involved in actually being there.

Staff has been great. When I have had a question about where something is, they have been very accommodating. If I say “No. I cannot see the sign. I am visually impaired,” they have walked me there. I had three pool area staff bent over my phone helping me try to load the ship’s app. We failed, but they were very sweet to devote a half an hour out of their days to my problem.

I have seen a woman with a white cane being guided to guest services by a staff member. I have seen another woman with a guide dog. It appears Royal Caribbean does provide some things for the visually impaired.

Today, before the weather went really bad, I did the bumper cars. It was the first time I have driven anything on my own for three-and-a-half years. It was rather nice to be behind the wheel again. And the even nicer thing was I was SUPPOSED to run into things! Please note this was with “British” bumper cars. The driver sat on the right. Go figure.

We booked this trip about a month ago. There were two rooms left. One was the grand suite and the other one was one of the less desirable rooms. Sort of a luxury version of steerage. You can guess which one we took.

While we are in about the most inaccessible part of the ship, I have had few problems finding my room. My husband has had the same problems. There are a lot of twists and turns to get there.

The room is extremely small but at least that means I can stand in front of the TV and pretty much reach every thing without even moving my feet. Today that was great because everyone is still developing his sea legs. Stumbling is not a good way to determine if someone is drunk or sober today!

I was supposed to do the “indoor skydiving” and go to a musical production today but the bad weather has pretty much everything being cancelled. Even the harbor of Boston has been closed until noon tomorrow. That means a reorganization of my shore excursions. Oh, well. If nothing else vision loss has taught me there is always another way to do things.

Planning and flexibility. Essential in the world of a VIP. Now I need to see if I can walk a relatively straight line to get back to the room. It is rocking and rolling around here!

Written October 11, 2019

Next: GOOD PEOPLE DO HAVE VISION LOSS

Smile for the Camera

Seven or eight years ago – before I even had a notion I would become visually impaired – I decided to print and frame a few of my vacation photos for the local photography competition. I had so many pictures I figured it was time I did something with them.

The judges really messed me up that first year. I got a blue ribbon on my first try. That ensured I would spend a small fortune every year printing and framing photos in pursuit of a blue ribbon and the princely sum of $5 for the prize. (And the glory. Let us not forget the glory!) [Lin/Linda: yes, the glory from small-town America. Just sayin’. ::grin::]

Fast forward to now. I just had the competition. Out of three entries, there was one red ribbon and a $4 check. (Don’t forget the monetary reward.) I took the photos when we were in Ireland this spring. I was definitely visually impaired at the time. So, does that mean the visually impaired can compete and take photos as well as the sighted? I would say yes, and no. [If you’re a member of our Facebook group, I’ve set up an album with some of Sue’s photos.]

This year’s winner – a story in pictures.

The term visually impaired photographer is not as much an oxymoron as you would believe. There are visually impaired folks who are professional photographers and actually making a living at it. I will include some photography tips from them later, but first, I want to share some of my experiences.

I find I am noticing fewer “perfect moments” for me to record with my camera. I used to see possible photos seemingly everywhere. Often now, the moment is passed before I realize what I am looking at. I do better with things that are more static than fluid.

As we all know, contrast can be king. Looking for a sloth or howler monkeys in the trees in Costa Rica was fruitless for me. They blended in too well. I ended up giving the camera to the guides. That way I would have the photos to look at later. Seeing the animals on the screen was much easier.

Technology is our friend when it comes to photography. From the quality now available in digital cameras to the editing programs you can download in some cases for free on the web, photos that start out as duds can turn into near masterpieces. Another thing about digital photography? You can take a thousand photos for very little cost. Got two good ones? Score! Delete the other 998 and start again.

Tammy Ruggles, perhaps the best known of the legally blind photographers, uses this quantity in search of quality approach. She takes high contrast, black and white shots. Often her photos are of landscape or close ups of plants or horses. Maria Carter, the author of the 2015 Country Living article that is my source here also reported portraits are hard for Ruggles because with her then 20/400 vision she was not able to discern faces.

By
Tammy Ruggles

Hmmmm…high contrast and static subjects. Sounds like Ruggles and I have independently discovered a few truths about taking photos with lousy vision.

In a post on blind photography in an issue of Disability Horizons, Ruggles suggests choosing a camera carefully and getting someone to teach you how to use it. Next, it. Is good to learn the basics of photography such as the rule of thirds. Ruggles also suggests you think about what you want to accomplish with your work as well as investigate the technology that might be able to help you towards your goals.

There you go. Once more it might not be what it was or what you would like it to be. It might take a lot more work but continuing to take decent photos as a visually impaired person is possible. The wonders of the modern world are there to assist.

Have I said “this is the best time in history to be going blind” recently?

Don’t Panic!

If you ever read The Hitchhiker’s Guide to the Galaxy – and I would recommend you read it if you have not and/or recommend you read it again if you have – you may remember one bit of sage advice : don’t panic! This bit of advice is offered repeatedly to our hero, Arthur Dent, as he travels through the Universe, fleeing from the destruction of the Earth to make way for an intergalactic bypass and seeking to find the answer to the questions of life. That answer, by the way, is “42”.

Don’t panic! You don’t have to understand it. Just enjoy the workings of a delightfully warped mind. Thank you, Doug Adams!

And I repeat: don’t panic! Lin informed me there was recently a piece on the possible links between age-related macular degeneration and Alzheimer’s. She remarked a few of you, well, panicked. Don’t do that!

Is it possible? Of course it is possible. The eye is the only part of the brain we can actually see without any messy surgeries or fancy machines. As part of the brain, your eye can, of course, get “brain- diseasey” things going wrong.

This does not, however, mean we are doomed to get dementia!

A couple of things to keep in mind. Number first: these are the very early days of this research. We really do not know much. Number second: the studies I saw were correlation studies. Correlation does not mean causality. In other words, just because two things look to be related it does not mean they are. And it especially does not mean one caused the other! Serious logical boo boo there.

I found the article I believe the other source was citing. I also found a 2014 JAMA Ophthalmology piece on the Association Between Age-Related Macular Degeneration, Alzheimer’s and Dementia. This was also a correlational study. After comparing nearly 66,000 AMD patients and nearly 17,000 Alzheimer’s patients the researchers discovered “considering AD and other dementia after AMD, their coexistence at the individual level is no different than that expected by chance.” In other words, they did not see ant evidence that AMD leads to Alzheimer’s.

Meaning? Don’t panic!

That said, you, me and just about everyone else I know would not get in line if the sign said “Get your Alzheimer’s here!” I would run rather rapidly in the opposite direction. In fact, I am “running” in the opposite direction several times a week right now.

I am doing this by actively working on my health and my cognitive skills. Vascular disease seems to be related to both AMD and dementia. It is important to take care of your heart and circulatory system. Take your medication, eat right and exercise regularly.

Much of my exercise is repetitive, rhythmic activity. That means I am thinking pretty much all of the time I am moving. I tell my hip hop instructor he is my secret weapon against Alzheimer’s. Just trying to figure out his steps and follow along give me as much a mental workout as the actual dancing gives me a physical workout.

I am also still working, playing video games (silly, easy ones), socializing, traveling, writing a blog and reading. In other words, if “use it or lose it” applies to cognitive skills, I am doing all I can to keep using them. Not lose them.

Bringing me back to Doug Adams and The Hitchhiker’s Guide to the Galaxy. If you want a few mental gymnastics, read and follow along if you can. Watch those wicked, left turns. And by all means, don’t panic!

Fight the Good Fight

Do you remember progress? You know. You start at point A and by the end of the week you are at C and maybe by the end of the month you are at M with a real possibility of getting to Z in the near future. Then you go on to master the next goal. Progress. You remember; don’t you?

When did progress become standing in place? Holding your own?

I had an eye appointment last week. When the good doctor eye-balled my eyeballs, he was pleased. He did not see any obvious deterioration in my condition. Great. I was successful by maintaining status quo.

This morning I went to yoga. I did well those poses I have always done well and truly stank at the poses I have always stunk at. Progress? Not really unless you consider maintenance to be progress.

Then you have those comments suggesting I should not even be maintaining. “I did not realize you were still so active” and “Oh, you’re still working?” What am I supposed to think about those? Am I supposed to be regressing?

This is not the way I have lived my life. There has always been a new mountain to climb and, yes, a new windmill to tilt at. Is that so awful now I am of a “certain age”?

Writing in the June 4, 2014 Atlantic, Linda Fried reported people like Carl Jung and Betty Frieden have seen age as a period of growth and renewal. Fried herself writes that we are a species wired to feel needed, respected and purposeful. I guess that means I am in good company.

Fried also wrote about the research of Becca Levy at Yale. Levy found older adults with a positive attitude towards aging lived an extra 7.5 years as compared to their contemporaries with negative attitudes.

So, seeing purpose and goals is good for us. Also, the simple facts of the matter are life and AMD are degenerative diseases. It takes effort to stay in one place against the tides of chaos and atrophy.

Maybe maintaining the status quo is actually success?

Even if I change my thought process to see lack of slippage – or at least minor slippage – as a positive thing, what am I supposed to do about my need for progress? Goal accomplished. Skill mastered. You know, progress! That feeling of accomplishment, of a job DONE.

The brutal truth is we are not going to “win” this battle against AMD any time soon. I relate to St. Paul (me, relate to a saint???) when he talked about the fight well fought. You fight the fight well even when you are aware you are losing. Still, what does that leave to make progress on?

You chose. How about climbing Kilimanjaro? Anne Lorimor did that this summer. Lorimor is 89. But she did that same climb a few years ago, so maybe that was just maintaining status quo. Hmmm…

Make a soufflé? Learn an instrument? What do you want to be able to say “I did that!” about? Which goals will you be progressing towards? You chose.

Written November 5th, 2019

Next: NOT YOUR ECCENTRIC RELATIVE

Control Freaks of the World UNITE!

Twice this week I have been accused of being a control freak. Yep. Guilty. I have always been high-energy and results-oriented. And arrogant. Don’t forget arrogant. My mother had mental health issues. My father was laid back. My husband is laid back. I have just about always been the ramrod on this ranchero. It is just the way it is. [Lin/Linda: just in case there is any doubt, Sue is indeed a control freak, high energy and results oriented…oh, and arrogant. She was this way when we met 40 years ago and hasn’t changed. You would think she wouldn’t have a friend in the world but that’s certainly not true! I love her as do many others.]

So, why twice in one week? My being arrogant is a given. Judgmental? A given. Ditto for a leader, a fixer, a “correcter”, etc. I also don’t admit when I am wrong. As often as THAT happens! ;). ( For a ten point list of my characteristics as a control freak see Learning Mind’s Ten Ways of Knowing You Are Dealing With A Control Freak.) [Yep, those too.]

To loop back here: why now? Why are these traits suddenly so salient people are commenting?

Well, for one thing, the puppygirls literally dropped me on my head a few days ago. The rabbit was just too great a temptation. Then last evening there was another rabbit and I dropped the leash to keep from face-planting. I cannot keep walking them together if this keeps happening. I have to re-establish some control.

Brain sprinkle, minor epiphany, in short – Eureka. That word ‘control’ is key here. Don’t stand in my way or tell me I can’t unless you want me to freak (and TOTALLY prove you wrong or die in the attempt). I have been in a control freak freak about things not doing what I want them to do! That is where this is coming from!

Second brain sprinkle/ minor epiphany: if I have problems coping with unsuccessfully trying to control Psycho Dog and Sister of Psycho Dog, how much lack of control do other people with vision loss experience? And are these people becoming control freaks as well?

Psychmechanics, in their 2015 article on the psychology of overly controlling people agreed those who are control freaks feel out of control. Feeling out of control motivates us to get back in control in the areas we perceive as lacking.

But what happens if we cannot regain control of that area in our life? Watch out! Everybody run!

Vision loss is a REAL lack of control. In their Psykologisk article from 2016, Engevold and Heggdal quoted Corbin as saying chronic illness interferes with “biographic time” and self-concept. As has been known for some time, those of us with a strong internal locus of control tend to see ourselves as masters of our own fates and those people have fewer psychological problems. Obviously, chronic illness shakes that bedrock and something needs to be done to firm it all back up again.

Engevoid and Heggdal outlined the Bodyknowledge Program as a possible intervention for the perceived lack of control in life with chronic conditions. This program contains many aspects of other programs we have suggested for avoiding depression but they do bear repeating:

Be aware of your body and understand your limitations. This includes understanding your disease and what is happening in your body
Accept your new, limited capacity
Establish priorities and set boundaries
Regain control. This also includes learning to use the resources that are available to you
Utilize the dialectic of mind and body to promote coping and health

So, in conclusion, control freaks of the world, UNITE! Take back the sense of control vision loss has taken from you! ….In the meantime, I am going to see what I can do about these dogs.

Written August 18th, 2019

Next: Cope Ahead Redux

It’s Contagious!

Emotions call to their brethren in others. If someone addresses us in anger, we get angry. If we go where people are laughing, we laugh as well. This is called emotional contagion. It is quite common and some people believe it may be at the root of such positive things as social cohesion and empathy.

However, sometimes, when the emotions are negative, it is not such a good thing. Therapists will suggest couples each take a time out when the discussion threatens to become a heated argument, for example. Escalating anger, with each partner’s emotion feeding on the emotion of the other, can be a dangerous thing.

Then there is mass hysteria. Mass hysteria is the transmission of the perception of threat through a population. It is usually spread by rumor but may also be spread in other ways, such as suggestion or example. Wikipedia speaks of the “dancing plague” of 1518. While this sounds to me like a really fun “plague” to have if you absolutely must have one – light years better than the Black Death, for instance – I am not sure I would want to boogie my way into the Afterworld as some folks did.

Closer to our own time, have you heard about the mass hysteria associated with Orson Wells’ radio presentation of War of the Worlds? While many people question the veracity of claims of suicides etc, the power of radio and other forms of mass media to spread the perception of threat is seldom questioned.

Where am I going with this? Here. Specifically, we are both blessed and cursed to have social media. We are able to share many things with friends new and old. We are able to support and comfort one another but with that same social media we are also able to scare each other nearly to death.

Each of us is different. Not everyone has the same background and not everyone will have the same future. Two courses of the same condition are rarely alike. Two people will often respond to the same treatment very differently. However, when we hear someone else’s story we somehow fear her story will be ours. Emotions take over and we despair.

The way we can keep from falling into the trap of assuming the fate of others will be ours and sinking deeper into despair is to step back and look at the facts. Using rational mind to counter emotional mind in order to get to the calm accepting state that is wise mind actually does work. [Lin/Linda: Rational mind, emotional mind and wise mind are from Sue’s page Three States of Mind. Check it out!]

In the case of the War of the Worlds broadcast, there were a number of ways to check the facts. The “news” of the “invasion” was only on one radio station. There was a disclaimer at the start of the show and the show was only an hour long. Change the station, ask a neighbor, wait before you panic…several different options for avoiding mass hysteria here.

How about in the world of AMD and social media?

Let’s take the conversion issue for example. Conversion from dry to wet AMD is scary but hardly inevitable. FACT: based on info from the Age-Related Macular Degeneration Foundation, approximately 10% of those with dry AMD convert to wet. That means we who have dry AMD have a 90% chance of staying dry and never converting. Why bet you will convert if those are the odds? Smart money is on assuming we stay dry.

How about “horrible” eye shots? When I felt nothing with the shots I may or may not be getting, Lin did a quick survey and got around 50 people who said they never had an issue. That was 50 people who read it, were available and answered within a couple of hours.

Bad results are not inevitable but it is the bad results people will tell you about.

Each of us is unique. We cannot assume from one person’s story that her fate will be our fate. If you are worried about something, step back, breathe and check the facts. Much of the time what we fear simply is not going to happen.

Where to get the facts? Ask us! If we don’t know, Lin and I will find out for you.

Oh, and if you want a good distraction, Orson Wells’ War of the Worlds radio broadcast is on You Tube. 57 minutes long. Enjoy.

Written August 10th, 2019

Next: CONTROL FREAKS OF THE WORLD UNITE!

Wanna See My Boo Boo?

Wanna see my boo boo? I fell on my bike yesterday. I have a lovely bruise on my right ankle where the bike hit me. However, it appears my ankle was tougher than my bike. I can still walk but my gears are slipping. Nuts! That means no more biking until there is a repair.

My guess is there are some people saying how I should not bike any more. After all, I am 66 and legally blind. Time to hang it up.

Nope. It was only partially my fault. When I saw they had had the road torn up and the patch job was questionable, I should have gone another way.

Bad decision, not bad vision.

Did I know I was going to fall? Of course not, but life is full of mishaps. We truly don’t have a crystal ball telling us what is going to happen to us.

Bringing me to the topic of a request Lin had. A member/reader wanted to know how I deal with the uncertainty of a progressive condition like age-related macular degeneration. Good question.

Probably the short answer to that question is this : I don’t think about it! Now that does not mean I tell myself not to think about it. Not at all. If you are at a party and are moving about the room trying to avoid a person you simply CANNOT stand, what are you thinking about? The person you cannot stand, of course! Did you want to ruin a perfectly good event thinking about that witch? Doubt it!

Better to put your mind elsewhere. These are yummy canapés! John tells such funny stories! Concentrate on what gives you pleasure, not what you don’t want to think about.

And when your attention wanders back, pick it up and move it and keep picking it up and moving it until the fun, interesting stuff is just where it naturally goes.

What is fun and interesting for you? We usually feel best and the most “like” ourselves when we follow our values. It is called being authentic. Little steps towards your goals and values will allow you to eventually manifest those goals and values. That is called purpose or having meaning in life. Remember Viktor Frankl said if you have a why, you can endure any how.

I did a page a long time ago about how having one eye yet “to go” has been found to cause more anxiety than having two, bad eyes. I have the “advantage” of having my second eye go bad practically overnight. Two, bad eyes are supposed to cause less anxiety; right? Lucky me; not.

Anyway, I guess I have the advantage – and I use that word loosely – of experiencing a sharp loss in vision and surviving. And I know I could do it again. At least in my mind, I was tried and not found wanting.

How many different ways have you been tried and not found wanting? Why would you think you would fail this test? We are a tough lot; we are. Vietnam vets, civil rights protesters, remember us? Whose music and fashions (minus the Nehru jacket; that is) keep coming back as “cool”? Ours. We had it going on before we knew what having it going on meant and there is no reason to think we are going to fall behind now.

So to wrap up: Boo boos happen. We cannot predict them and fear of falling off a bike means you will never ride. How much better to be unmindful of when things will end? How much better to concentrate on the joys in life and not the vague possibilities of disaster? Personally, I think it is all a heck of a lot better. Now I have to get that damn bike fixed!

Written August 5th, 2019

Next: IT’S CONTAGIOUS

Lab Rats Unite!

Hi! Long time, no write much; I know. I have, however, been lurking in the background and Lin has been keeping me apprised of some of what is happening. Certainly not all, but some.

Some of what she has said involves Facebook members and clinical trials. You guys rock!

Lin told me one member has been patiently/impatiently waiting for a trial with LumiThera. That was the page I just did “on assignment”. The one on photobiomodulation.

Lin also told me a member was being recruited for a clinical trial using stem cells. The member thought of me – and my obsession with stem cell research – and wondered why I was not being included. After all, one of the sites is Philadelphia.

First of all, I want to thank the member for thinking of me. The way we are going to get this stuff beat is to all work together both sharing and advancing knowledge. I am feeling that our time has come and the research is advancing quickly. This is because thousands of people like us are willing to be “lab rats” to get the job done.

Secondly, I want to address his query as to why the stem cell obsessed old lady is not beating down doors to get into this study. A big reason is this: they don’t want me!

I agreed to do the APL-2 study several months ago. I have integrity and am good to my word. Also, clinical trials most often look for treatment naive subjects. That means you cannot have been in any other study.

Another reason is my eyes are not bad enough. This is a phase 1 study and the best corrected acuity for this study is 37, pretty impaired.

Phase 1? A quick review here: phase 1 studies are for safety and tolerability only. Are you going to have something really weird happen? What are the reactions to this procedure and can we put up with having those reaction? Any effect achieved is gravy. We look for the effects when we do phase 2 which is a “proof of concept” phase.

Now 37 as a measure of acuity had me a little stumped. I am used to the ever popular 20/xxx notation. That is you can see at 20 feet what normal eyes can see at xxx feet.

Precision-Vision.com published a handy dandy little Visual Acuity Ranges and Visual Acuity Notations chart. The thing is sort of a Rosetta Stone for equivalent notations, true Snellen fractions, magnification requirements and – voila! – visual acuity scores. Turns out visual acuity scores are no more than letter counts.

If you have a visual acuity score as required by the stem cell clinical trial, your Snellen fraction is worse than 20/320. In other words you see at 20 feet as well as people with good vision see at 320 feet or even further away. This is in the severe vision loss range.

My vision is probably in the moderately impaired range. Those are Snellen scores from 20/80 to 20/160 according to the chart. Bluntly put, I got in the APL-2 study partially because they are confident enough they won’t screw things up that they are willing to give the experimental treatment to people who still have fair vision.

The LumiThera treatment? Guess what all you folks with mild vision loss…that one will be for you! They are working with light therapy to reduce drusen size before there is significant vision loss. Yippee!

So, here we are, working together to share and advance knowledge. Severe loss, moderate loss and mild loss people all pitching in to contribute where they can. Sort of gives you a warm and fuzzy feeling; doesn’t it?

And by the way, guys? You rock!

Next: Bad News, Good News

Finally a Lab Rat

Hi! Things here are crazy. Absolutely going around in circles. I have a full counseling client load and am teaching not one, but two psychoeducational groups. Also trying to get some summer stuff going such as keeping the pool clean and cleaning out some stuff for the animal rescue group’s yard sale.

If I did not know I do it to myself all the time, I would feel sorry for myself!

But, no, I am not asking for sympathy. Just a little slack. It has taken me longer than it should have to tell you I was chosen for the study.

As I said, it is APL-2. It is a complement factor inhibitor. That means, again, that it interferes with the series of chemical reactions that leads to the complement immune reaction. The complement immune system, according to Wikipedia, is part of the innate immune system and therefore helps to make up the older of the two immune systems (innate and adaptive). The innate immune system is sooo old – your line: “how old is it? “ – that it is the immune system in plants, fungi, insects and primitive multicellular organisms. Jeez. Leave it to me to get a glitch in something that should have been perfected, like, a million years ago.

Anyway, activation of the complement cascade leads to the identification of bacteria, marking them as targets and the clearance of cell debris. That would be great, but for one, small problem. Since AMD is an autoimmune disease, the “target for tonight” is our own, healthy cells. A little bit confused, I would say.

The chemical in APL-2 is believed to “take out” a molecule that is involved in all three channels or courses or whatever that are part of the complement cascade. It is pretty far “upstream” as compared to some other treatments they have looked at in the past.

Be that all as it may, the study is double blind. That means I have no idea which of four treatment groups I may be in. My “handler” does not know either. Also, the doctor who does my measurements doesn’t know. The only thing I know is I am supposed to “get a shot” every month. That means I am either in the monthly treatment group or the monthly sham – read faking the shot – group.

After hearing some of the problems people who get regular eye shots have, I don’t know what to believe. Why? Quite honestly, I have felt exactly nothing and there is no evidence I have had a shot. No discomfort, no puncture mark, nada. I go back and forth between thinking there is no way it can be this easy and I must be in the sham group to thinking they really are that good at sticking people in the eye with needles!

Weird talent but I am going to assume I am actually getting the shots and be glad they display said talent. Might as well be positive. I will not know for sure until the trial ends in three years.

So that is that. After three and a half years I have achieved the coveted status of lab rat. It may not be the study I wanted but it was the one offered and I am finally fighting back. Feels kinda good.

Written June 23rd, 2019

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