macular degeneration, macular, diagnosis Self Help – 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

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

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

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!

Goofing Up

I hate to feel stupid. I have had a life of being, if not the sharpest knife in the drawer, at least one of the sharpest. It is totally frustrating to make mistakes!

These days I have a tendency to read clocks and watches wrong. This morning we were out the door much earlier than we needed to be. We sat and waited much longer than we should have had to. My fault. I read the time wrong.

I suggested to my husband that he should start double checking me. I am not sure he still quite “gets it”. He is used to me running the show. Calling the shots. OK, he is also used to my objecting if he questions me. This ‘goofing up on the simplest things Sue’ is new.

Then I had to have my camera checked. My auto focus wasn’t. I was afraid it was a serious issue. We leave on vacation in a week! I need my camera!

Nope. The problem was I had somehow turned off the auto focus. I did not realize it. I could not see that extra, little switch. My camera guy was going to just tell me about the possibility in an email, but he decided not to. It would be quicker and easier if he just did it. After all, I miss things. I don’t get things. Things have changed for me.

Oh, well, at least my photos will be better. It has been years since I was able to focus a camera. Let the auto focus do it…now that it is on.

Then off to the hospital for blood work. There is a list of names on the monitor on the wall. Look for your name. Yeah. Right. I have to get to about a foot from the monitor to read my damn name. Should i get a chair and park it in front of the monitor? The clerical person suggested I get the pink lady to help. Let the pink lady monitor the monitor…some of the other patients cued me in instead. At the end of the day, most people are exceptionally kind.

Which brings me back around to those stupid mistakes. I guess I need to practice what I preach and accept this is all part of having a degenerative eye disease. Having people in waiting rooms accept my limitations is reasonably easy. They have known me for 30 seconds. What about people who have known me for 30 years?

I ask to have things double checked. People don’t believe I am serious. After all, I “seldom” make mistakes. How many gaffs and screw-ups do they need before they believe me? How long before people understand I am asking for help because I need help!?!?

So, life goes on. It is all a learning curve. Old habits die harder than new. It really does not make sense to expect people to “get it” on the first or second try. I expect as I lose more sight, I will be teaching this “lesson” over and over. It seems to be just the way it gets.

Written March 25th, 2019

Next: IS THE WAITING OVER?

Feeling Grateful!

Good morning! I am feeling grateful this week. I guess that means this is a gratitude page. Gratitude is a good way to help weather the storms of life. We teach it in therapy. It is also a bedrock piece of every religion I know anything about. Gratitude is good stuff.

First of all, a shout out to Cracker Barrel restaurants. We ate at one of their locations yesterday. .When we came up to the hostess stand, my husband noted a sign saying large print and Braille menus were available.

Now, this is not a perfect world. The sign was about six inches by four inches. It was on the front of the podium. In a perfect world, the sign would have been multicolored neon and include audio. In other words, there was no way on God’s little, green acre anyone with visual impairment would see the sign to know the menus were available. But they are trying!

I mention Cracker Barrel by name for two reasons. The first reason is this: I was never going to see that sign. You probably would not, either! However, now you know to ask for the large print menu.

The second reason is this: efforts to accommodate impairments should be acknowledged. That means, if you know of a business that goes the extra mile for the visually impaired, let us know! It will help your fellow VIPs as well as send a message to the business that they “done good”.

And now for the potentially controversial part of the program. Hear me out before you hang me. Ok?

Of everything that could have gone wrong in my life, I am grateful it was age-related macular degeneration. What do you think about that?

Why would I say a “crazy” thing like that? For the first reason, it struck me in my “old age” (not that I am OLD, of course). I have a friend who has a teen with a chronic, fatiguing condition. When I was this teen’s age I had school, activities, friends. No time for those things when all you seem to do is sleep. Would I have wanted that condition? Nope.

Another reason a late in life condition was good? I was already established. I had my education and over 35, career years under my belt. My financial and personal lives were in good shape.  Basically, if you can be prepared to lose your central vision, I was prepared.

I also have a former coworker diagnosed with bone cancer. Yikes. Do I need to actually state the positives of having dry AMD instead of bone cancer? Lethality, pain, constantly going for treatments, financial drain, just to name a few. Dry AMD is not lethal and there is no pain. Since there presently are no treatments, my life does not revolve around doctor’s visits. There is some financial cost, but since most of my “toys” are durable goods, those purchases were one time events and mostly paid by state vision services. If I had the choice between dry AMD and bone cancer, AMD is a shoo in.

And one last thing: my AMD started out atypically. It hit me like a Mack truck, but most of the time, dry AMD is slow, slow, slow. After the initial shock, it has been giving me time to adapt.  I am learning how to deal with central vision loss at a doable pace.

And one more last thing, the more time it takes, the closer we are to treatments and maybe even cures. This is the best time in history to be experiencing a sight loss.

Still ready to hang me?

Written February 19th, 2019

Next: I DON’T MISS DRIVING

“And Now For Something Entirely Different”

[Lin/Linda: The title is from the 1971 film of the same name by the Monty Python Flying Circus.]

Today is my “odds and ends” day. I don’t work Mondays. Part of the reason for that is so I can have time to dedicate to, well, odds and ends.

Today my husband suggested lunch out. I said Chinese. He said the buffet at the strip mall. Decision made.

In the same strip mall is a well-known, national discount clothing store …oh, ok, it is Marshalls. This Marshalls has been in the same location for at least four years. I realized today I had never been in that store.

No real reason why. Certainly nothing against Marshalls. Before my vision loss I was busy. Since my vision loss I have been dependent on others for my transportation. I do things on the drivers’ schedules. I plan my trips. I know where I am going and what I am doing. Side trips not allowed.

I have said this before but it bears repeating: adventures and spontaneity are not big parts of my existence any more. Not that they were before, of course. I plan. Bless us, but can I plan. However, having the added factors of not wanting to inconvenience others and/or not wanting to miss my ride, even these fifty yard little side trips do not occur any more.

Today I went to Marshalls. I bought five things. No, I do not by any stretch of the imagination need clothes but they were cute. They are also a little different from things I generally buy. Deciding to go into the store, I had decided I needed a little different in my life.

It appears a guy named Ben Fletcher has made a career – or at least part of a career – out of telling people to “do something different”. Posting for psychology today.com (2/15/14) Fletcher reported happy people DO things differently than sad people. Happy is as happy does.

Fletcher quotes Martin Seligman, the father of positive psychology as saying, in order to flourish emotionally we need PERMA. Those stand for Positive Emotion, Engagement, Relationship, Meaning and a sense of Accomplishment. Fletcher suggested we need GREAT DREAMS.

Now several of those are things we discuss in DBT. You know, acceptance, meaning, exercise. But I want to focus on the T, trying out. Fletcher defines that as trying new things.

Fletcher quoted the results of some of Seligman’s work from 2005. It appears happiness scores went up when people broke old habits and behaved differently. It did not have to be extremely differently. Just enough to shake things up.

I don’t know about you but I don’t get overly excited about going to work. However, I do get excited about a new psychoeducational program we plan to teach. I don’t get excited about an old song we dance to in hip hop, but I get excited about the “impossible” move he expects us to execute in his newest routine. Same with dog walks. I don’t get excited walking the girls to the top of the hill one more time but finding a new place to walk them makes me feel good.

So what can you do to avoid the old ssdd doldrums? You know, the ones you sunk even deeper into when you lost sight. What can you do different? What can you do to feel better?

Written February 11th, 2019

Next:

Next: FEELING GRATEFUL

I’m stressed, anxious, depressed. How do I deal with this?

First, what you’re feeling is ‘normal’ for those who get a diagnosis of any vision-threatening disease. Some of you have been told by your eye specialist, “There’s nothing I can do for you.” That certainly can contribute to the stress of getting the diagnosis!

Research shows that stress may be a contributing factor to the progression of AMD. Even though more research is necessary, we need to be able to manage our emotional health to make better decisions and to be open to learning new and better ways to cope with the disease.

Who is Sue and Why Should I Read What She Writes?

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 69 and with advanced dry AMD/geographic atrophy, she works as a psychologist, 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 new friends she’s been making along the way!

My Recommendations

‘Advice to the Newly Diagnosed’

Since she’s written over 600 pages, I’ve collected some of them:

Sue’s other pages for the newly diagnosed and highly-rated pages

Dealing with the Emotional Reaction to Vision Loss

Stress and AMD

The article ‘Assessing the Impact of Stress on Age-Related Eye Disease’ says, “Article says, “Dougherty and colleagues also note that stress may be associated with increased inflammation and that AMD is an inflammatory disease — raising the possibility that stress may contribute to disease progression. Future research using repeated assessments with the PSS and measurement of inflammatory markers might help determine how perceived stress levels affect the risk of AMD progression and deteriorating vision”


Worry vs Planning

I am sure it escaped no one’s attention that all my future concerns, all the things I am planning for, are basically positive. A lot of work and potentially overwhelming but positive. I know more than one person silently – or not so silently – asked how I can be focused on positive concerns when – hey, folks! I am losing my central vision! I am legally blind! Why am I not putting my mental and physical efforts on the fact that I am losing my sight? What is wrong with me?!?!

Well, it is like this: I have gotten my finances in order. I have gotten my rides organized. I have my technology in place. I am known to the closest research team who are working on dry AMD. What else do I need to plan? If you can think of anything, let me know, but I think I have my planning needs covered. Anything beyond that is worry.

What is planning and what is worry? Frank Ryan writing for the dummies series says that planning – or problem-solving – leads to a solution. There is an end to it. Come up with a solution and you can stop planning. Worry, on the other hand is repetitive and does not lead to a solution. Worry creates the illusion you are in control. It gives you the incorrect belief you can somehow get in front of the problem and avert disaster. In the end, worry is ineffective in creating positive change. It leads to anxiety and depression.

Planning is active and purposeful. Worry is passive and avoidant. Worry keeps you in emotional mind but planning gets you into wise mind. [Lin/Linda: For those just joining us, “emotional mind” and “wise mind” are concepts from DBT, a psychological therapy that Sue uses in her job as a psychologist, teaches and uses on herself! You can read more about it in this article from Psychology Today and in her past pages – look for the category Cognitive Therapy.]

The unfortunate truth is there is no solution to the problem we have. Dry Age-Related Macular Degeneration is currently a disease with no treatment and no cure. Ryan suggested we accept that which we cannot change.

Frederic Neuman writing for Psychology Today took a slightly different approach. He called worry frustrated planning. He says we worry about what we are not able to control. We search for a plan to control the things we cannot control. When one cannot be found, we worry.

Neuman went on to suggest a two-part strategy for attacking a worry. Basically, it involves turning a worry into a plan! What are the chances this scary thing will happen and what happens if and when it happens?

It is a given that I am going centrally blind. It is happening. What happens next as my vision loss progresses? I am physically fit. I am financially fit. I have technology and human supports. I am on lists for experimental treatments. As I become more impaired, those are the things I will lean on. I have a plan about what I am going to do. Why worry?

So, decide what might go wrong. How are you going to handle that? Gather the resources you need to implement the plan. Feel better!

Written January 20th, 2019

Next: BE TRUE TO YOURSELF

Sue on Assignment: Exhausted by Life?

Rather than hold you in suspense about the other five of the 6 Tips For What to Do When You Feel Exhausted by Life, I figured I would swing right into this. Also, I am launching several, other personal and professional projects this winter and spring and I need to keep up the pace! Speaking of being exhausted by life!

Anyway, #2 is “remind yourself you are doing the best you can”. This is related to the DBT tenet, clients are doing the best they can do, but they can do better. Huh? How many people do you know who choose to suffer if they have the skill and the resources to get out of it? Not many, I suppose. Find the resources and learn the skills and you just may have a way to lessen suffering. It may be coping but it could be an easier form.

Avoiding the need to work harder trap is #3. There are some things in this world that are not going to change no matter what. The proverbial dead horse is not getting up to pull no matter how hard you whip it. That is not your fault. If you are feeling you are not trying hard enough, use your rational mind to appraise the situation. Does it actually require extra effort? Maybe it requires a different approach or you need different skills. If none of these work, give it a rest and use tolerance skills.

Avoiding rumination is #4 on the list. Rumination and depression tend to go together. Focusing your attention elsewhere can help with this.

What the list’s author calls regulating your rhythms is referred to as PlEASE in DBT. Take care of physical illness, avoid mood altering substances and be sure you are eating, sleeping and exercising optimally for you.

Last but certainly not least on their list is self-soothing. DBT talks about soothing through all of the five senses. What can you think you can do to self-soothe? Treat yourself to something you don’t often do. Get a massage. Buy a high-end chocolate and savor it. Take a bubble bath instead of a shower. The list is endless.

So that is the end of the article suggestions, but I am going to add one more: remember you are more than your disability. Take some time to be you and engage in things you enjoy to the best of your abilities. Occasionally put the visually impaired person away on the shelf. She will be there when you go to get her there off again. In other words, when the going gets tough, the tough go fishing!

Have fun!

Written December 1st, 2018

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Sue on Assignment: Coping Fatigue?

In my job as a DBT therapist, I am a huge proponent of tolerating and coping. Accept that which you cannot change. Acceptance and tolerance of that which we cannot change reduce suffering. [To read about DBT, check out Sue’s page Teacher, Teach Thyself.]

I believe that is totally true. The Buddha taught us the road to suffering is a desire for things we do not and often cannot have. The Buddha was a smart man. That is why he was the Buddha.

However, when I had a client with physical, social and financial challenges tell me he was sick of coping, the only thing I could think was “Amen, brother. I am with you on that.”

There does not appear to be such a thing as coping fatigue, but there should be. There are days I am sick to death of working around, making do, being tolerant. There are days – in a paraphrase of my father – I think my life and this disease should crap or get off the pot. Don’t just sit there. DO something! I may not be falling into the abyss, but I am not making any progress either. Can we get moving here?!?!

A reader asked why I am excited about possibly being in the APL-2 study even when I am not 100% confident about it. Not in so many words, but I responded that it represents movement and if I don’t have some movement – even if it might be around in circles – I will go insane. Those trials represent my hope for problem-solving and change, the other end of my dialectic.

Sometimes, when I am tired of coping, I go the other way. I say “the devil with it” and take a break from the struggle.  I might snuggle down with a couple of dogs and a bowl of ice cream. (Make that a couple of dogs trying to eat my ice cream!) It is not a bad thing to mentally put my burden down and take a rest from even trying to muddle my way through. Of course, a bit later I pick everything up again and continue on the road.

I went looking for some expert advice on coping fatigue (I actually think I could make some money on this concept. It is a catchy title!). I did find an article from Psychology Today entitled 6 Tips for What to Do When You Feel Exhausted by Life. Close enough.

The first tip intrigued me, and I am not going to get much beyond it – or possibly even through it – in the number of words I allow myself. The point was to give up the Just World fallacy. Just World capitalized. What the hey?

According to Wikipedia, the Just World hypothesis says we reap what we sow. It says bad people get bad things and good people get nothing but good things. That concept is great if you are trying to scare people into walking the straight and narrow, but I am not so sure it always holds water. Yes, to quote Forrest Gump “Stupid is as stupid does”. We often reap what we sow when we do stupid things, but does that apply to something like a chronic condition? Are we bad people because a bad thing happened to us?

I will continue with this. I found the concept intriguing. I promise you it actually has relevance to coping with AMD. Really. I promise.  Hold on…I will get there.

Written November 30th, 2018

Next: It’s Not Your Fault

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Sue on Assignment: It’s Not Your Fault!

Hey! How are ya? Like I said, I got sort of intrigued by the Just World fallacy. I figured I would read a bit more. Knowledge is power.

It turns out, according to Wiki, this fallacy has been around pretty much forever with philosophers in 180 CE arguing against it. In the 1960s Melvin Lerner started to study it in social psychology. He was curious how brutal regimes maintain popular support. The Just World fallacy helps these regimes because people feel when other people suffered they deserve to suffer. After all, in a Just World why would good people be punished? Thus, if you can make a group suffer, others will look down on them because they deserve what they got. Yikes.

Lerner did propose belief in a Just World is important for our well-being. It allows us to have some faith in the future. However, what happens when you are the one who is experiencing the suffering? Not only do other people tend to blame you…a la the Just World fallacy…but you blame yourself, too!!

This is why the Psychology Today author suggested ditching the Just World concept. It is also why DBT teaches two of the lessons it does.

The first one is the nonjudgmental stance. Pointing the finger and blaming is ineffective. It does not get the job done. What it does do is produce shame and guilt.

The second lesson is “everything has a cause but it is not necessarily you!” When I teach that concept I get out the list of risk factors for AMD. Above 55 years of age. Female. White. High blood pressure. Family history of AMD. Sun exposure. A diet lacking in some nutrients. I have the whole lot of those. Yes, I missed blue eyes, smoking lack of activity and obesity, but hey, that is 7 out of 11!

It is not a question of why me, but one of why NOT me?

And did you notice most of the ones I hit are things I could do nothing about? I am a 65-year-old, white female who had a father with AMD. So, shoot me. How is this my fault? It’s not. When all is said and done, life is not fair. There is much that is not contingent upon our behaviors. You did not cause your AMD You are not bad.

So that is the Just World fallacy. Recognizing the world is not fair and just and, indeed, bad things happen to good people may not do much to end your coping fatigue but then again, it could do quite a bit. Are you the type who is afraid you are somehow responsible for your vision loss? Do you spend hours and days trying to decide what you did to deserve this? Knowing the Just World assumption is a fallacy can get you away from beating yourself up. It can remove the burden of guilt. You did not do this. Life is not fair. You are off the hook for this one! Feel better now?

Written November 30th, 2018

Next: Sue on Assignment: Exhausted by Life?

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Sue’s Best Pages – Part 4

continued from part 3

Part 4 Using the Tools from DBT (Dialectical Behavioral Therapy)

  • “For the past two years, I have had the opportunity to teach the educational components of Dialectical Behavioral Therapy (DBT). Just by chance, the unit I was teaching was Emotional Regulation. If anyone needed emotional regulation at that time it was me. Teacher, teach thyself.”
  • “DBT has a technique called Opposite to Emotion. It is just what it sounds like. If you have an unhealthy emotion, act in the way you would act if you were having the opposite emotion. Behavior follows emotion but emotion also follows behavior.”
  • “One of the DBT Distress Tolerance Skills is ACCEPTS (another acronym I’ll explain). The A is for activities.  A lot of time to sit around and think about everything that is going wrong is not good for anyone. Getting out and about and – for even just an hour – forgetting that all hell is breaking loose in your life is great therapy.”
  • “Enough said on that. Besides activities and comparisons, there are five more ACCEPTS skills: contribute, (opposite-to) emotion, pushing away, thoughts and sensations (the CEPTS). This website is my idea of contribute. Contribute means doing for others. Get out of yourself and make things better for someone else.”
  • “DBT has some skills for improving the moment. These skills are good for getting through the rough patches when you are down or frustrated and there is not a great deal you can do about fixing things at that time. Conveniently, they are called – acronym alert here – IMPROVE skills.”
  • Dialectic Behavioral Therapy (DBT) has Self-Soothing Skills that are taught as part of the distress tolerance module. You remember self-soothing? When you were one it was the thumb in the mouth and the favorite blankie. Maybe it was sitting in your crib and rocking. Right now those ways of self-soothing might not appear very appealing, but they worked when you were one. What can we old, mature folks do that will work as well without the stigma…or the buck teeth?”
  • “Back on track, DBT concepts here. I think that this situation may highlight the ACCEPTS skills. I see contributing (the first ‘c’ in ACCEPTS). We sometimes have to weather a crisis by getting out of our own problems and helping someone else. It gets the focus off of us. It gets us back into the human race and allows us to flex our compassion muscles instead of our self-pity ones.”

Next: Coming soon – Technology

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What Can I Do to Slow the Progression of AMD?

There ARE things you can do to battle AMD. These are the recommendations backed by research. Since we don’t yet know what causes AMD in any individual, we don’t know which of these are more effective than others. We do know that there are many factors that influence the development and progression.

I have included a few self-help tips, too.

These are NOT in any order except for number 1.

Remain hopeful!! There is a lot in the pipeline–>http://www.retina-specialist.com/…/pipeline-update-whats-ex…

1. Don’t smoke. #4 and many others.

2. Risk of AMD is 50-70% genetic, the rest is age and lifestyle factors below. High genetic risk of AMD? Lifestyle factors such as nrs. 3, 4, 5, 6, 7, 11 are important. #4

3. Follow the Mediterranean diet, on the low carb side, esp. low sugar. #4 #1 and others

4. As part of the Mediterranean diet, eat lots of colorful veggies, esp green and leafy which have important carotenoids in them. #4 #1 and others

5. Omega-3 supplementation? If one’s diet is rich in healthy oils, some nuts, and fish such as wild caught salmon, some say supplementation is not necessary. #4 #1 and others

6. Moderate aerobic exercise. #1 and others

7. Drink enough water to stay hydrated. #1 and others

8. Reduce stress. Although it is common to have depression & anxiety when you get the diagnosis (and can recur as you do your research, please seek help if you cannot move past this–especially if you have thoughts of harming yourself. #3 #16

9. Wear sunglasses when outside: polarized, blue block. #9

10. Working on the computer – use built-in screen colors to reduce blue light. There’s no firm evidence that electronic devices give off enough blue light to harm our eyes. It does affect our sleep which is important. #17

11. Maintain overall good health including maintaining a normal BMI, normal blood pressure, normal cholesterol. #4 and others

12. Moderate AMD or wet AMD in one eye but not the other? Take AREDS2 with zinc if you know you are NOT zinc sensitive (genetic test). If you don’t know or know that you ARE zinc sensitive, AREDS2 with no zinc. #2

13. Use an Amsler Grid or other monitoring systems. #5 #7 #8

14. If by using aids in nr. 13 & symptoms indicate that dry converted to wet, get treated with anti-VEGF as soon as possible. The earlier the treatment, the better the prognosis. #6

15. Have your eyes examined regularly (every 6 months advised) by a retinal specialist who is an ophthalmologist who specializes in diseases of the retina; write down your questions and take them to your next visit. #12

16. TIP: If you have vision impairment, find a low vision specialist who is an optometrist who specializes in evaluating vision and recommending low vision aids. There are also organizations and specialists who can advise you as to how to adapt your home or workplace. #13

17. TIP: Make sure you have enough light and provide contrast since AMD decreases the ability to detect contrast and increases the need for light.

18. TIP: Don’t drive if you are not safe to do so, especially those who have blind spots. You may not realize that you HAVE blind spots that could block your ability to see other cars or things along the road. #10


References

#1 Mediterranean diet reduces risk for AMD–>http://www.aoa.org/news/clinical-eye-care/mediterranean-diet

# 2 AREDS/AREDS2: A Guide–>https://mymacularjournal.com/home/guide

#3 Can psychological stress cause vision loss?–>https://m.medicalxpress.com/…/2018-06-psychological-stress-…

#4 Macular Degeneration Epidemiology: Nature-Nurture, Lifestyle Factors, Genetic Risk, and Gene-Environment Interactions – The Weisenfeld Award Lecture–>https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5749242/

#5 ForeseeHome–>https://www.foreseehome.com/

#6 VIDEO: Registry shows early detection of wet AMD helps patients maintain better vision–>https://www.healio.com/…/video-registry-shows-early-detecti…

#7 KeepSight monitoring tools->http://internationalmacularandretinalfoundation.org/keepsi…/

#8 How to Use the Amsler Grid–>https://www.brightfocus.org/mac…/article/how-use-amsler-grid

#9 How to Choose Sunglasses–>http://www.webrn-maculardegeneration.com/sunglasses-and-mac…

#10 Mailbox or Child with self-test–https://mymacularjournal.com/home/mailbox-child

#11 Macular Degeneration: Frequently Asked Questions–>https://www.brightfocus.org/…/macular-frequently-asked-ques…

#12 Ten Questions to Ask Your Doctor about Macular Degeneration–>https://www.macular.org/ten-questions-ask-your-doctor

#13 How Low Vision Services Can Help You–>https://www.brightfocus.org/…/how-low-vision-services-can-h…

#14 Low Vision Rehabilitation and Low Vision Aids–>https://www.aao.org/…/diseas…/low-vision-aids-rehabilitation

#15 Reflecting on ‘grief’ after losing my vision–>http://www.blindintuition.com/reflecting-on-grief/

#16 Highlight: Is depression following the diagnosis of AMD normal?–>https://mymacularjournal.com/archives/5923

#17 Blue light hastens vision loss? ‘Not so fast,’ —>http://www.aoa.org/news/clinical-eye-care/blue-light-transforms-molecules-?refer=rss

Life is Not Fair

I am capable of throwing one, fine pity party. Nothing is going my way. Everyone hates me, and I will never be able to cope with this! [Lin/Linda: We’ll have a little sing along about this at the end of the page. ::grin::]

There are some days I would be just as happy to retire to my bed with a half a gallon of chocolate ice cream and a spoon -don’t forget the spoon! – as well as a full box of tissue – you don’t want to get your ice cream soggy! I just want to eat myself into oblivion and cry myself to sleep. To face this all the next day…

Dry AMD is a long campaign involving loss after loss. I have been living with – surviving, tolerating, whatever – this condition for over two-and-a-half years now and it can be damn discouraging. What do you do when you are out of ice cream and have to face reality? How do we get back to an even keel?

First of all, let’s look at your physical state. Are you sleeping well? Eating well? Exercising? Taking care of illness? We all know things do not go as well when we are physically out of sorts. If you want to tolerate your vision loss better, take your allergy medication. Walk the stairs. Eat your vegetables! A fit and healthy you is a more tolerant you.

As much as we are hoping and praying and looking every day for a treatment, the name of the game right now is tolerance. How do I tolerate today? …and today? …and today? Sometimes it comes down to how do I tolerate this moment. Depends on the day.

We have talked about distress tolerance skills in other posts. They should be available through a simple search of the website. Quickly here, I want to mention avoiding a black and white attitude in your interpretation of situations. Is it really true that nothing ever goes your way and everyone hates you? Is it true you will never be able to cope? Absolutely are rare in life. If you have even once been successful in coping, that means there is a chance it can happen again. Don’t be so quick to dismiss yourself.

Interpretations are extremely important. The lens we look through upon the world is critical. Try to look at the bright side. Maybe today is one day closer to a substantive treatment, not one more day that must be endured on the way to the grave. It is all in the spin, doctor. Reinterpret and reframe again and again.

And last of all for this page, stop wasting energy fighting reality. No, it is not fair. Somewhere along the line, someone told you life is not fair. You should believe him. Bad things happen to good people and this time it was your turn. Why? Dunno. Back to Alfred Lord Tennyson, “Ours is not to reason why. Ours is but to do and die.” Make the best of a bad situation. Put your energy towards things that can be affected, not towards things that cannot.

Maybe the meaning in your suffering will be a classic poem. Could be worse.

[Lin/Linda: As promised: sing along with the video “Nobody Likes Me, Everybody Hates Me, Think I’ll Go Eat Worms!”]

Written August 20th, 2018

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Coming Out

Hi. Friday evening and it is kicking up a good thunderstorm…Gee, how novel.

I am still back on why people don’t come out of the visually impaired “closet”. I had a client today who has a rare medical condition and does not want to share with colleagues either. Once again I am made aware of something and examples of that same thing pop up like toadstools.

Anyway, he basically said if people know he is different, he will be treated differently. Made me think: how different are we?

Looking on the web I discovered in a December 2, 2014, Newsroom article that at that time 40% of the population 65 and over had a disability. This was 15.7 million people! Now granted, the largest group was mobility issues but vision problems came in fifth.

In other words, once you hit 65, you can expect nearly half of your peers to have some sort of disability. Everyone into the pool! Maybe we are not so different after all.

If you are religious or have an interest in philosophy you have heard people say pain and suffering are part of the human condition. They just affirm we are human. They allow us to join others and experience being human together.

Ok. They have a point. Shared adversity often binds people together. Anything else?

Todd Hall in 8 Ways You Can Grow from Suffering has a couple of points I found interesting. Hill’s fifth point was suffering deepens our appreciation of our vulnerability. We are all vulnerable. For example, this time places flooded that I cannot remember flooding before. Houses on hills got water-filled basements. The Fates are capricious. It is the human condition: we are vulnerable.

Hall’s sixth point is suffering allow us to accept our limitations. He pointed out acceptance of limitations takes much less energy than it does to fight it. There is a certain peace in that.

Having limitations binds us to the rest of humanity. Remember “No Man is an Island?” In our limitations, we reach out both to ask for and offer help. In others words, it is not just shared adversity that can bind us together but individual adversity as well.

So, the truth of the matter is, having a disability does not make us different from much of the rest of humanity. We are not the odd men out. And if you factor in the vulnerability factor – bad things could happen to anyone at any time – each of us is just one of seven billion in the same fix. The fix we are in is being human.

One last thing before I close. There is only one letter different between human and humane. It is, of course, the “e” although it would have worked out better if it were a “u”. If it were a “u”, I could have been really glib and said “you” coming out of the “closet” about your vision loss and joining in would allow the humans around you to become humane. Compassionate, one of the virtues is expressed and strengthened in the presence of suffering.

Pretty good argument? But what do I know? I am, after all, only human.

Written August 17th, 2018

Next: From the Top of the Pile

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Coping: A Review

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

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

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

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

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

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

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

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

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

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

Written August 16th, 2018

Next: I Know Who I Am

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Same Stuff Different Day

I have been home from State College for about 12 hours. Tedium has set in quickly.

The online dictionary defines tedium as the state of tediousness. Gee, how informative! (Sorry. Feeling snarky.) Tedious means monotonous, boring, SSDD (Same Stuff Different Day).

I have an inkling of what the problem is. State College was exciting when I hardly even got there. I was there last year. I was there in May. I will be there next month and hopefully again next year. Something I counted on to break up the monotony has become more monotonous.

In Never a dull moment by Kirsten Weir for the APA, John Eastwood described boredom as being “the unfulfilled desire for satisfying activity.” As I said before, it is not a lack of things to do, but a lack of things you want to do. Been there. Done that. Got the t-shirt. In other words, sorting laundry, and mopping floors today has not improved my spirits.

James Danckert has discovered those who bore easily may be more susceptible to mental health problems. One of these problems is depression. Although boredom and depression are highly correlated, they are separate states. Eastman suggested boredom can lead to inner focus, negative rumination being a factor in depression.

Out in the “real world” most tedium comes to an end. But what about some of us who are homebound? Being underwhelmed, as it were, leads to some behaviors we should not have. Think alcohol abuse and overeating.

There is even some evidence the phrase “bored to death” is not hyperbole at all! In a longitudinal study of British (hi, guys!) civil servants, the ones who reported being chronically bored were more likely to die young. Yikes!

So what to do about this tedium issue? Another researcher, Van Tilburg suggested bored, meaningless activities lead to people trying to generate meaning in their lives for themselves. Sometimes this can lead to negative outcomes.

The idea seems to be to find a positive purpose. What can you do to give meaning to your existence? To your vision loss? Maybe you want to sign up to call other homebound folks to check on them and chat. If you are going to engage them in conversation, maybe you should listen to some news features. Maybe you can call some people losing their sight. You might have a common interest!

Are you still living in your hometown, the town your great-grandparents lived in, too? Remember some stories you heard and record them for the historical society.

Did you miss out on instrumental lessons as a child? Always want to be able to sing without sounding like a toad with laryngitis? It is not too late. I would suspect a few phone calls could find instruction at a reasonable rate. Even a kid in a middle school band could give beginners lessons. And just imagine hearing about life through the eyes of a 13-year old.

What do I do to increase purpose in my life? Oh, I write a blog. I thought you knew! I also walk puppygirls. Bye!

Written August 4, 2018

Lin/Linda here: I am here to share a resource I found for myself when I was looking for courses in my new field.  It’s udemy.com— a school that has reasonably-priced online courses in all kinds of topics from personal development (eg. happiness, religion & spirituality, stress management, memory), lifestyle (eg. beauty & makeup, travel, arts & crafts), Music, Photography, Language and many MANY more! Many of the courses are $10.99 or $11.99, some are more expensive. They are always running sales. They’ll give you your money back if you don’t like a course which happened to me. They are very happy to work with their customers. Check them out, and let us know which courses you are taking.

Next: Where’s Your Hope?

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Zen Habits

I have been at “loose ends” all day today. Alright, maybe not ALL day but definitely this afternoon. This morning I got a haircut and went grocery shopping. I also went looking for shoes. The puppygirls ate one shoe each from TWO – count them 2! – pairs yesterday, and I was hoping to replace them with similar items. No joy. Nothing looked even vaguely like what I wanted.

I came home and went online. I found one pair that would fit the bill. Sort of. If Amazon does not have it, I don’t think you can get it anywhere. Bless them.

Anyway, trying to figure out why I am so discontent and cranky today. I know I am tired. I did a ten-mile paddle yesterday. That was a bit much. (Being tired is a vulnerability factor for negative emotions; ya know.) I did not get into the study I was interested in. I did not see a single pair of shoes that interested me.

The last two add up to frustration and disappointment. If it looks like a duck and walks like a duck and quacks like a duck, it is probably a duck; right? There is probably a good chance this mood is the result of frustration and disappointment. And overdoing it yesterday.

Well, I am going to “treat” my fatigue to a little “hair of the dog”. I have a ride to hip-hop, and I am going to exercise more by dancing. That is opposite to emotion in DBT speak. If you don’t like your emotion, change it! I am down and dancing always brings me up.

That should work some on the frustration and disappointment, too. The joy I can feel when I dance is opposite to those emotions as well.

What else can I do? Well, Zen Habits suggest a lot of stuff that sounds like what DBT teaches. Not surprising since DBT has roots in Buddhism.

For one thing, have compassion for myself. Frustration and disappointment are part of the human condition, and I – in spite of what some people may think! – am human. I am just participating in humanity. And if I were another human, would I not give him compassion?

Then there is allowing the feelings to be. They are legitimate. Let them play out to the end. Emotions have short lives and unless I retrigger them, they will be here for a while and die a natural death. Being afraid of emotions and avoiding them only causes more problems.

Zen Habits has more but I want to pick out the mindfulness one next. Truly, how much different am I today than I was yesterday? Or this minute from last minute? My health is still good. I have a purpose. There are kind souls who care and take care of me every day. Not getting into the study or finding a pair of blue sandals did not change that. Right now in this instant, I am fine. I am fine in this instant and this one. Etcetera, etcetera…

The last thing they suggest is being curious about what actually IS coming down the road for me. I ordered shoes online. Maybe they will be real “finds.” The perfect shoes for me. I was promised there are other studies coming. Anyone interested in finding out what they are? Maybe one of them will be exactly what I am looking for. You never know.

Next: Dual Diagnosis

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When the Going Gets Tough…

It seems we live for the challenge. As if my visual problems and my husband’s health problems are not enough, we just seem to ATTRACT things.

Man vs Wild, with Wild being the Maggie Monster, continues. She clears a 4’ fence (in a leap with a little boost at the end, hind feet in the chain link), so we put up a six-foot fence. She goes under a fence; we anchor it. She has now started crawling under the deck to get out. The girl is a wonder. It would not be so bad, but she gets herself into the pool, comes out and uses the furniture as her towel!

In addition to the Maggie Monster games, I have been dealing with the business office at school – can you spell SNAFU? – and trying to get fingerprinted (or not) for the mini, mini continuing education class I am teaching in the fall. Everything turns into an event!

So, life is just one, big challenge. When we don’t have any, we seem to attract them. Probably the way we live our lives. We wanted the puppygirls. I want to teach my mini, mini course on AMD.

There are essentially two ways to look at challenges. Either you consider it all an incredible pain in the tush or…game on!

The Huffington Post wrote about ten reasons to love the obstacles that show up in life. Quoting Ryan Holliday, the Huffington article suggests we succeed not in spite of obstacles but because of them.

Obstacles show us who we are, for example. Have you made a decision on how you will handle the obstacle of vision loss? What do you think about that? Can you, as who you are, live with that decision? Maybe it is not “you” at all.

Obstacles show us what we need to do next. What do we need to work on? We continue working on keeping the puppygirls enclosed and safe. Maybe you need to work on finding transportation or finding a low vision specialist to teach you skills. What do you need to do to get over the hurdle?

Holliday says obstacles make us tough. When the going gets tough, the tough get going.

I found this one intriguing. Number 8 on the list is “obstacles allow us to change our lives for the better” and the first line in it says“sometimes they are an excuse for changing our lives”.

Hate your old job? Maybe this is an opportunity to get training for a new one. Very often Blindness and Visual Services can help you switch careers. What do you REALLY want to be when you grow up? If it is reasonable for a VIP, there is a chance you can do it still.

And then there is the ever famous “I want to see the world before I go blind!”. Sounds like a great excuse for jetting off to me!

Those are just a few of the 10 reasons they listed. Check out the article for the rest. Hope this little “reframe” of obstacles into challenges was helpful!

PS The puppygirls have now pushed out the sliding side of the air conditioner and gone out the window! Maggie went next door and forced her way under the fence of the neighbor’s dog yard. This is the first time I have ever had a dog that broke IN somewhere!

Game on!??

Written July 1st, 2018

Next: In the Pipeline for Wet AMD

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Stories to Tell

I am ready for a little break on my trip down memory lane. Last evening I sent a thank you card to school and a condolence card to my childhood friend. Her father died. It would appear we are now the keepers of the keys, the keepers of the memories. How strange.

Then back to the basement for two hours! I found the sake cup Daddy brought back from the Pacific Theatre. Put clear liquid in it, and a beautiful girl appears at the bottom. Would you like a 1960’s pamphlet on building a bomb shelter? How about a Patty Playpal? She doesn’t have any arms now, but I have them in the next box. I am sure someone will be able to fix her.

So, yeah, I save ‘stuff’. Lots of good memories. I am fortunate. Remember reminiscing on good things in life can remind us we have a lot to build and draw upon when things are not great.

But hanging out in the basement and looking at the detritus of my youth is not the way I want to spend the next 30 years. (Didn’t know I intend to hang around until 95; did you?) It is time for a few new memories. New experiences are called for!

Huffington Post in a 2017 article by Larry Alton says a good reason to try new experiences is to help you get over the fear. Facing fears now is helpful. Even if you were not exaggerating the negative as we often do, facing fears lets us see how brave we can be. Might come in handy when it’s time for that eye shot.

Alton also says we need new experiences because it helps us know ourselves. It also stimulates our creativity. Lots of reasons.

And don’t think it all has to be some great, meaningful thing! How about engaging in some good, old-fashion play! Play, and especially something you don’t normally do, will improve your memory and thinking skills. It will also improve your emotional and social well-being.

What to do…what to do? GreatSeniorLiving printed a list of fun and activities for seniors. Some of the things they suggest are pickleball and frisbee tossing. Our Y has pickleball and there is a frisbee course in the park. I have never done either one.

Looking for something a little less active? They suggest fingerpainting and working with clay. When was the last time you played with play-doh? I cannot remember the last time but when I think of play-doh, the emotion is positive. Must have been fun!

And then there is storytelling. Which story should you tell? Your own, of course! I worked with a woman who was part of the Vietnam babylift in 1975. When she told her story to the kids at school, you could hear a pin drop. They were riveted. My guess is you have a story you could tell as well. Or maybe the story of someone not able to tell his story anymore.

…I found a picture of my father and my uncle in their Army uniforms. My uncle was wounded in the Battle of the Bulge. He was separated from his unit in the Ardennes forest…..

Written June 23rd, 2018

Next: Keeping Our Eyes Open

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Focus

It has been known for years that the concept of a dichotomy between the mind and the body is…well, a crock. Therefore it comes as no real surprise they are finding connections between mental health and eye health. In a 2013 European Heart Journal Flammer et al comment upon the close relationship between the heart and the eyes. They point out how highly vascularized eyes actually are and how diseases of the vascular system have a strong effect on eyes.

Since we all pretty much know stress and other mental health problems have a direct effect on the circulatory system, it could almost go unsaid that mental health concerns affect eyes.

Apparently, it has been left to Bernard Sabel and others, publishing in the EMPA Journal, to state this explicitly. To wit: evidence is strong stress and other mental health problems not only exacerbate eye disease, they are very likely causative factors.

So what does that mean for us? Many of us already have irreversible (as of now, but stay tuned the next few years!) damage to our retinas. However, there are some in whom the damage is still slight. Perhaps there can be serious damage prevented in those folks.

I am teaching mindfulness right now in my DBT class. At the risk of repeating myself (repeating myself, repeating myself….), I want to point out yet again the benefits of a mindfulness/ meditative practice. There is objective evidence meditative practices can actually reshape the brain. [Lin/Linda: since Sue has written several pages on mindfulness and meditation, you can search for those words to read her past pages.]

The Dalai Lama has actively recruited Tibetan monks to participate in neuroimaging studies. They (they being Davidson and Lutz at the University of Wisconsin, Madison) have discovered both focused attention and Open Monitoring meditation have real impacts on the activities of the brain. This includes the amygdala, the ‘fight, flight or freeze’ center, of the brain involved in stress reactions and fear.

Not a Tibetan Buddhist monk? Not a problem. While those guys are much more accomplished than the vast majority of the rest of us, they do not have exclusive rights to focused attention or Open Monitoring meditation. People all over the world of every race and creed can and do practice.

Focused attention sounds simple but needs a lot of practice. It is ‘just’ putting your mind to one thing and one thing only. Light a candle and watch the flame. When your attention wanders, refocus. Refocus. Refocus. Do it as many times as needed. Minds naturally jump around. Don’t be discouraged.

Open Monitoring is pure awareness. There is no focus, no judgment, no attachment. Things flow in and they flow out. The ultimate goal is to stay in the monitoring state, aware of all equally.

This is obviously an advanced form of meditation. Still, even us mere mortal types can glimpse it. Have you ever walked outside into nature early on a still, summer morning? Did you sort of get immersed in the morning? To me, that approximates an Open Monitoring experience.

So, there we have it. Stress reduction? Focus. One thing in the moment. Don’t judge. Don’t covet. Practice gratitude. Pray. When it is put that way, it really is sort of basic.

Written June 22nd, 2018

Next: Stories to Tell

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You Don’t Look Blind

The words for the week are validation and invalidating. Either those words or situations exemplifying those words have cropped up all week.

The online dictionary gives the third definition of validation as “the recognition or affirmation that a person or their feelings or opinions are valid or worthwhile”. In DBT an invalidating environment is believed to help to cause borderline personality disorder. An invalidating environment will punish or trivialize the expression of personal experience.

Invalidating environments were a big topic at the training we did as well as being a big topic in our assigned reading. Then, this week, when I was feeling awful about leaving my school job, everyone kept saying how “wonderful!” it was to be retiring. Nobody ‘got’ me. Every remark invalidated my private experience. Some people even told me how “crazy” I was not to be overwhelmed with joy!

Trust me; these are all kind people. They were not trying to give me mental health problems. (They have been doing that for the past 40 years! Oops! I did not say that.) They were just projecting their desires on to me. Either that or they did not know what to say.

All of this got me thinking about the invalidation we experience with vision loss. How many people have told you it is not that bad? Then there is my all-time favorite: “you don’t look blind!” Write in and share your favorite invalidating remark.

Jamie Long wrote The Power of Invalidation: 5 Things Not to Say. I recognize a number of them as things I say or have had said to me. How about “it could be worse.”? Then there are the twins, “ I am sorry that” and “you should not”. They are members of the “Feel-that- way” family. Long also reviews “Don’t think about it. Just move on” as well as “ I am not having this conversation!”

So how to be validating? Long has a short list of suggestions for that. She states that validation does not mean agreement. Emotions are different from behaviors. You can recognize a feeling without agreeing with a behavior.

Long also suggests we not become defensive, or at least try. This is not only if you are the person receiving the invalidation but also the person delivering the invalidation. Like I said, people react from their own feelings and realities. They may not match yours. They might also be at a loss as to what to say.

And if you step in it with what you thought was a supportive remark? Accept at least a part of the blame for things going off the rails. Long also suggests reflecting the feelings or even summarizing the experience. Heavy on the feelings involved, that is.

Last but not least, there are some situations we just can’t fix. Muddling around and making some inane comments in hopes of making things better doesn’t work. Better to just listen. And if the inane, ‘helpful’ comments are aimed at you, cut the other guy a break and actually tell him you don’t expect him to fix it. Ask him just to listen.

So those are our (or at least my) vocabulary words for the week. Quiz next week! Class dismissed!✌?

Written June 8th, 2018

Next: Why Drop Out?

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