Welcome!

June 2023 There’s an announcement that since Sue has not written any new journal pages for some time, the site has been archived until we can decide if the work necessary to make sure all information is accurate and up-to-date can be made.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

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

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

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

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

This website is divided into 4 parts:

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

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

Courses Coming Soon!

Thanks!

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

Advice from Scarlett

OK. Right now I have three choices. I could scrub the tub, keep working on the taxes – using the handy dandy CCTV that was loaned to me; I might add – or I can write another post. Sounds like a ‘no-brainer’ to me!

I mentioned a couple of times that I am a group instructor for Dialectic Behavior Therapy (DBT). I mentioned Distress Tolerance Skills that make up the acronym ACCEPTS. So far I have talked about two of those: activities and comparison (AC of ACCEPTS).

Activities are one of my favorite strategies. I like to keep busy. I have already – only partially tongue in cheek – picked out the inscription for my tombstone. What is it, you ask? “I wasn’t done yet!”

On my tombstone: “I wasn’t done yet!”

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.

Contribute means doing for others and that’s what this website is for me.

OOOPS. Make that three ACCEPTS strategies I have touched upon. Mea culpa (Latin for “my bad”, a phrase I dislike). We talked a little about opposite-to emotion also. Behavior follows emotion but emotion also follows behavior; remember? If you have an emotion you want to get rid of, do a behavior that you would do if feeling the opposite emotion. In other words, if you are sad, dance. If you are fearful, approach.

Behavior follows emotion but emotion follows behavior.

I like to call pushing away the Scarlett O’Hara skill. Do you remember Gone with the Wind? The crops are burning, the slaves are running away and the Yankees are at the door. Prissy comes to Scarlett with one more problem and what is Scarlett’s reply? “I’ll think about that tomorrow.” Note, she did not say she would never handle the problem. She did not say she was going to ignore the problem. She said she would deal with it tomorrow. That is pushing away. Just put it on the shelf until you can deal with it effectively.

It’s OK sometimes to be like Scarlett O’Hara: “I’ll think about that tomorrow.”

Thoughts are distractions that take the whole mind. Work on a puzzle. Learn a new skill. Get into a fast-moving tennis match. Climb on a high ropes course (being 30 feet off the ground and suspended only by a cable does tend to focus one!). The idea is to need to be so mindful of what you are doing there is no room for worry.

I am not crazy about the S in ACCEPTS, sensations, simply because I am not a big one for pain. Not that the sensation has to be pain, just intense. The idea is akin to something like this: you forget you have a killer migraine because you just bloodied your toe kicking the curb. The throbbing of your foot makes you forget your head. Some people suggest a freezing cold shower or holding ice cubes for the sensation. Whatever you do, it has to be intense enough to move your attention away from the distress. Sort of a shock to the system as it were.

So those are the ACCEPTS skills. They are primarily distraction skills for dealing with a situation that cannot be changed….such as this pesky vision loss thing. I hope they are helpful for you. Use them in good health.

The ACCEPTS skills are primarily distraction skills for dealing with a situation that cannot be changed.

Written in March 2016. Reviewed September 2018.

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Crazy Like a Fox

The day comes for me to go to my second appointment with Regillo. I ‘dress for success’ for these appointments. Some people may think putting on a professional-looking skirt and pantyhose and doing my makeup for a doctor’s appointment is a little crazy, but I think of myself as being crazy like a fox.

I ‘dress for success’ for the appointment with Regillo. Some say I’m crazy but I think of myself as crazy like a fox.

I can be a manipulative little thing when I want to be. People think of manipulation as a bad thing. It has gotten a bad name because people think that manipulation is always for the agent’s own gain and always hurts the person who he (or she) is trying to manipulate. That is far from the truth. There is something called ‘positive manipulation’. Your mother used it on your when she told you “here comes the train! Open the tunnel!” so that you would eat your smashed peas. You have used it yourself. We just don’t like to admit it because manipulative has been paired with words like evil and conniving in our culture. Every one of us is manipulative. Some of us do it with finesse and some are heavy-handed. It is simply a matter of style…and training.

DBT Interpersonal Effectiveness Skills teach us that as long as you are not hurting others, not being dishonest, etc, using finesse and certain strategies is perfectly acceptable to try to get what you want. The goal of interpersonal effective is getting someone to do something for you and that person feeling good about having done it. Win-win. And yes, it is positive – gasp – manipulation.

As long as you are not being dishonest or hurting the other person, manipulation is a perfectly acceptable skill according to DBT.

Another reason I dress up is related – sort of – to the IMPROVE (another acronym) the Moment Skills of DBT Distress Tolerance. I am trying to improve the way I think of myself and the situation. Putting on ‘good’ clothes reminds me I am a professional and have a few strong points. The saying is “clothes make the man”. They also make the woman.

“Clothes make the man” and the women. I’m reminding myself that I am a professional and a few strong points.

So, I dress for success because whether anyone else realizes it or not, this appointment is a job interview. I am interviewing, once again, for the job of lab rat.

I have been anxious about this appointment for days. I am not sure what the decline in my vision will mean –am I no longer qualified for the study?

After the usual round of screenings by technicians, I finally rotate around to the man himself. Regillo confirms there has been significant cell atrophy – read ‘wasting and death’ – since I last saw him in August. He calms my fears that I may have done this to myself. No, this was a natural progression of the disease. No external factors such as sunlight reflected off of the snow or my high blood pressure would have caused this to happen. This is good. I can now at least get rid of one concern. I have been declared not guilty.

Regillo calms my fears that I may have done this to myself. I have been declared not guilty.

Just the same, I still have the worry about the study. Will I still qualify? The study is for those with dry macular degeneration only and this rapid loss of vision suggests I may be developing wet AMD.

Regillo runs an IV and puts beta carotene in my veins. I daresay this is the first time I have ever mainlined ‘carrot juice’! Beta carotene is mostly Vitamin A and your eyes lap it up. By watching where the ‘carrot juice’ goes in your eyes and comparing old imagines with new ones, the technicians and doctor can see if my eyes have been creating new veins.

I daresay this is the first time I have ever mainlined ‘carrot juice’! It’s beta carotene & helps the doctor compare old images with new ones.

Thank God. There are no new veins in either of my eyes. I still fit diagnostic criteria for dry AMD and therefore the criteria for the study.

Regillo suggests I refer myself for low vision therapy – already done – and AGAIN referred me to the study. He suggested that he might be seeing me ‘downtown’. I replied he would definitely be seeing me downtown. Regillo just smiled. Or at least I think he did. Do you think I was too confident?

Regillo just smiled. Or at least I think he did. I still qualified for the study and I am confident I will be in it.

Written in March 2016. Reviewed September 2018.

Continue reading “Crazy Like a Fox”

Tech Talk

On one of my ‘out to lunch’ ladies’ excursions we stopped at our local cellular store. I had been having difficulty with my cell phone. Or perhaps I should say my cell phone was having problems with me. I was unable to read my text. I was calling people I had no intention of calling. It’s amazing how similar some names appear when you really can’t see them well.

I was unable to read my text. I was calling people I had no intention of calling.

Tyler took my friend and me under his wing. He got into the accessibility menu of my telephone and tried to make the font big enough for me to see. He tried to point out all sorts of exciting things that could be done with my Android phone. It’s rather amazing what is on such a small machine.

Tyler wanted to put TalkBack on my phone. I demurred. I had already had it on and had a devil of a time getting it back off again. A sweet young woman in Maine and I spent 10 minutes laughing together. We could not shut the TalkBack lady off! Every time the phone was jostled that accursed voice would tell me the time! Things got so bad I suggested the young lady make a house call to help me out. After all Maine is only 8 hours away and this was an emergency! Thank heavens, I was finally able to quiet the TalkBack lady before we needed to go to these extreme measures.

There are accessibility features on both Android and Apple phones. Some are more trouble than they are worth.

So why am I talking about my interactions with the cell phone people? Well for one reason, these encounters once again prove my point that there are wonderful people in the world. I truly believe most people will help if you give them the opportunity. It makes people feel good to help. This is particularly true if the person they are trying to help maintains a sense of humor. A strong sense of the absurd is helpful, too.

I truly believe most people will help if you give them an opportunity especially if you maintain a sense of humor.

Another reason I have for highlighting these encounters is they gave me an opportunity to use the DBT Comparison Strategy. You remember: that is the Distress Tolerance Skill that basically says “hey, things could be worse. Look at that poor guy!” OK, maybe not those exact words, but you get the point.

“Hey, things could be worse. Look at that poor guy!”

I was thinking about what my father had to help him when he had AMD. He made do with a hand-held magnifying lens. Twenty years ago that was pretty much the state of the art.

Comparatively speaking, now is a great time to be losing your vision. Probably the best time yet in the history of the species. How do you like that for cockeyed optimism?

There is so much more to help people with low vision than the hand-held magnifier of 20 years ago.

I mentioned that I have always been an avid reader. Right now I cannot pick up a book or a magazine and get much out of it. However, I have read The Secret Garden in the last few weeks. How? Amazon has free classics to download on a tablet. I have a zoom feature on my tablet that allowed me to magnify the text. I may have had to turn the page at every paragraph, but I read the book.

I even solved the problem of ‘mystery novel interruptus’ that happened when I had to stop 30 pages shy of the end of a new releases paperback I had. Joy of joys, the Bureau of Blindness and Visual Services tech guy loaned me a CCTV. That is closed-circuit TV. You put a paper or whatever you want to read under the camera and it shows up HUGE on the screen. It will have to go to the office when I go back to work, but right now I can get away with trying it out on some things here at home.

The tech guy loaned me a CCTV which makes things you put under the camera HUGE.

The bottom line for this post? You have technical resources. Get yourself to your friendly neighborhood tech or phone store and ask for help. Devices you already own – a cell phone, a tablet – have accessibility settings. Ask someone to help you use them. We have more resources to help us than any generation before us. Comparably speaking, it’s a pretty good time to lose your sight.

You probably already own a device that has accessibility settings. Ask someone to help you use them.

Written in March 2016. Reviewed September 2018.

Continue reading “Tech Talk”

Out To Lunch

So here I am in a holding pattern. Some of these things are like the Army. My father used to say his experience in the Army during WWII was a series of hurry-up-and-wait experiences. I find that true of all bureaucracies.

So, I am waiting to see Regillo again, Rock Star of Retinas and Wizard of Wills. I am waiting for my referrals for services to come through so I can get started on returning to a life that looks like the one I just lost and is “a life worth living” (a DBT Goal Definition depending upon whose life it is). Did I mention I have no, zero, nada, none patience?

I’m in a holding pattern. Did I mention I have no, zero, nada, none patience?

Here I want to send out kudos to people. Just people in general, although there are also some special people in the mix, too. I is a psychologist: I is. I get a kick out of people. I love their strengths and their foibles (especially their foibles) and their warmth. I know a lot of people and, hard to believe, some of them actually like me. In the last month I would not have gotten along without my ‘peeps’ (or is that only the spelling for chickens?). Not only did Lin and Dave embrace this work of therapy and do most of the work to make it a reality, other people in my life have come through for me big time. My husband has been ‘driving Miss Susie’ all over God’s green acre, class members have been giving me rides to my exercise programs and people have been inviting me to activities. You know who you are and I thank you.

Thank you to all who have been driving me, inviting me, helping me. You know who you are.

I have become the ‘out to lunch lady’. OK, those of you who know me know I have always been a bit ‘out to lunch’, but these times I am actually eating. People are taking me to lunch and getting me OUT. 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.

ACCEPTS is a DBT Distress Tolerance Skill. A is for Activities. I go out to lunch, a lot! And other activities, too.

I have been working hard to maintain my exercise class schedule. I have begged and cajoled and pleaded for rides – often without the necessity for all of those dramatics – and I have volunteers who will take me. I have been to a concert and gone to play in the park. And, yes, I have been out to lunch, a lot!

Acute crisis (is that redundant?) or long-term adjustment to a truly crappy turn of events, the purpose of the Distress Tolerance Skills are just to get you through. They may not be pretty. They may not be elegant and they sure will not solve the problem but they get you through without doing any more harm.

More harm. A lot of what we do in lousy situations does more harm. The obvious ones are things such as abusing substances and beating up on the people we should be reaching out to. The less obvious ones include NOT accepting that things have really gone wrong and somehow you have to deal.

A lot of what we do in lousy situations does more harm. The less obvious ones include NOT accepting that things have really gone wrong and somehow you have to deal.

There are some cute little sayings in DBT that are easy to remember. One of them is “what we resist, persists.” Another one is “acceptance does not mean approval”. You don’t have to approve of a turn of events in order to accept that it happened. Trust me. I am very disapproving of what has happened to my vision. However, if I don’t accept the reality of the situation, how am I going to make things any better? I could have denied that I cannot see well. Kept on driving and killed someone. I could have kept on working and making mistakes. That would have hurt clients and destroyed my professional reputation. If I resisted the reality of having a vision loss, the problems would have persisted and gotten worse. At least this way I am taking steps, working with a professional to hopefully allow me to see better.

If I resisted the realty of a vision loss, the problems would have persisted and gotten worse.

I will revisit the concepts of Distress Tolerance as we go along. Right now let me get back to the original concept of this posting: I love people.

One of the BIG problems with AMD for me is not being able to see faces from a certain distance. I had an acquaintance tell me I had walked right past her and had not acknowledged her. It had me in tears because I truly do not want to offend people nor for people to think I am a snob.

I am discovering that having AMD visual impairment is a dilemma. My vision is good enough that I can navigate pretty well. I appear to be fully sighted….and blowing them off. I considered finding some way of identifying myself as partially sighted but I have not come up with any good ideas. Wearing a sign appears to be in bad taste and buying a white cane would be disrespectful of those who truly have serious vision loss. I thought about those black, black glasses but my sense of pride and my sense of style joined forces and rejected that idea in short order.

A BIG problem is not being able to see faces from a certain distance.

The idea I have chosen is simply to TELL people. I am a talker and this is a small town. Word travels at the speed of light. I have also swallowed my pride and have gotten into the habit of – when necessary – identifying myself as visually impaired. Bitter pill to swallow because it means changing my entire self-identification and admitting the tough girl needs some help. However, it has gotten easier and it does work. People are generally pretty kind.

I appear to be fully sighted. I have chosen to simply TELL people.

One of the Cs in ACCEPTS is comparison. The bitter pill of admitting to a visual handicap is a lot easier for me when I do a comparison. Do I want to withhold the information and look ditsy and stupid? After all, the information is probably posted right in front of my nose. Or is a visual handicap a better reason? Ditsy and stupid or visually impaired? You compare. You chose.

Taking from another DBT module, Interpersonal Effectiveness, I want to say something about how to ask for what you want and/or need. Social scientists have discovered that simply giving a reason, no matter how inane, will make people more likely to do something you would like. It could be as stupid as asking to move to the front of the line at the snack bar because you want a hot dog. Works better than you would ever believe.

The DBT skill Interpersonal Effectiveness says that you need to ask for what you want and/or need.

Written in February 2016. Reviewed September 2018.

Continue reading “Out To Lunch”

A Human Doing

Moving ahead in time again, I found myself having taken leave of ….a turn of phrase makes me want to say ‘leave of my senses’ even though that is not how I was thinking when I started this sentence. But maybe I did. People (hello, Lin) told me to pace myself and that this was going to be a marathon and not a sprint, but I am a go-er and a do-er with the proverbial motor in my butt. I do not hang well. I was out of work and pretty much grounded. I am happiest when I have a project so – curse it – I and my vision loss are going to be my project.

I am a go-er and a do-er with the proverbial motor in my butt.

I had made an appointment with my optometrist originally hoping that something as easy as a new pair of specs would solve the problem. I kept the appointment even though I was not holding out a lot of hope for a ‘spec-tacular’ rescue (sorry, could not help being goofy there). I got a few things out of the encounter. One was the information that while I thought my eyes had suddenly and inexplicably self-destructed, the problem was actually part of the continuing process of degeneration.

The center red dot represents the macula. Each consecutive ring from the center to the periphery represents another drop in acuity level.

According to my optometrist, the drusen had reached the center of my left macula. She explained the macula is set up like a dart board. There are greater values in the middle where acuity/vision would be a 50. When the drusen reached the center of my macula, I lost my ’50 points’ vision. Add to that a progression in my right eye and I was up the proverbial creek.

Eccentric viewing was a skill my optometrist thought I should learn. Now, there are a number of people in my life who have always thought my views were eccentric, but that was not what she was talking about. Apparently, eccentric viewing is using the intact – but not as finely tuned – cells of the rest of the retina to do the jobs of the macula. Many people with central vision loss learn to read with their peripheral vision. Sweet trick if you can master it. I think I need Eccentric Viewing 101. I have been practicing looking out of the corner of my eye or focusing just a bit above and to the right of what I really want to see. Sometimes it works and sometimes it doesn’t. Apparently, this is going to take more than a couple of days to master.

My optometrist also suggested I wait until the Bureau of Blindness and Visual Services (BVS or BBVS) appointment to pursue low vision services. Since I was – and am – planning on going back to work, there was a chance this organization would help me with some of the expenses of equipment.

Wait. Patience. Really???????? You don’t know me too well, do you?

I had already contacted the Bureau of Blindness and Visual Services, a part of the Office of Vocational Rehabilitation (OVR). I had an appointment set up with the vocational specialist they had assigned me. When I first spoke with my BVS counselor I had warned him I am not a patient person. In fact, I am a doggedly persistent pain. I suggested he give me an assignment. It would be self-defense for him and would give me something to do. My assignment? Get copies of my eye evaluations and put together some samples of the work I had done and that I wanted to return to. Yes. I was on the job.

I warned him I am not a patient person. I told him to give me an assignment and he did.

Meeting with my BVS counselor, I signed the usual mess of legal forms and found out I was going to get three different services. One would be low vision support, one would be technology and one would be ‘habilitation services’…whatever that is. I am hoping it has something to do with lighting.

I would get low vision, technology, and rehabilitation services. Let’s go!

Written February 2016. Reviewed September 2018.

Continue reading “A Human Doing”

A Tutu and A Tiara

I would like to go back a day or so in time but continue on the topic of DBT Emotional Regulation Skills. Needless to say, finding out my AMD had progressed that quickly and I would have to redefine myself as a visually impaired person was not fun. It was downright depressing and we have already addressed the lovely panic attacks that have been – and actually continue to be – enveloping me at odd moments. Saying that I was in a state would be an understatement. My husband said that I cried more than I had cried in all the previous 25 years of our marriage. So, in that state, why in the name of heaven am I wearing a blue tulle tutu and a paper tiara? The answer is: it was Marcy’s birthday. We had been planning a party in Zumba class.

I had cried more than I had cried in all the previous 25 years of our marriage.

Could I have stayed home and cried? Of course. Part of me wanted to and no one would have faulted me. I had drawn the bad card and it was understandable if I had crawled into my shell for a while, even a long while. The problem was that it was Marcy’s birthday and I had a tutu and tiara waiting for me. I was supposed to be in my usual place dancing. The problem also was that I had to do something to challenge my mood or I would have been a long time crawling out of my hole.

It was Marcy’s birthday and I had a tutu and tiara waiting for me.

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. Not a new concept, Ignatius Loyola said something about performing the acts of faith and faith will follow. In other words: fake it until you make it.

Opposite to Emotion boils down to fake it until you make it.

So, for one hour, I acted as if all was right in my world. I dressed up. I danced. I laughed. And for that hour I felt better.

Please note I said for that one hour. It is all right that it did not last forever. It is all right if I went back to being distressed. For that one hour, I was improving my mood and fighting the downward spiral that could have led to more problems, such as a serious depression. Maybe I could do it another hour another time. Behavior follows emotions but emotions also follow behavior. Fake it until you make it. Put on your tutu and your tiara and dance.

Put on your tutu and your tiara and dance.

Written February 2016. Reviewed September 2018.

Continue reading “A Tutu and A Tiara”

Teacher, Teach Thyself

Do I need to even say that I was distraught? I had been struggling at work for days. I had been lately having panic attacks. Now I knew why but knowing why had not really helped.

One thing I knew was that I had to take a leave of absence from my employment. Tearfully, I sat in the hallway at the ophthalmologist’s office and called my employers. It was not fair to my clients to do a poor job. It was not me to do a poor job. The only option was to hang it up for a while.

It was not me to do a poor job. I had to hang it up for a while.

That weekend I continued with the panic attacks in earnest. I was waking up hyperventilating with my pulse racing. I felt as if I had a rock in the pit of my stomach. This is what dread feels like.

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.

I will go into some of the tenets and strategies more in-depth later on in my postings. Suffice it to say now, I needed to use the first of the PLEASE strategies (PLEASE is an acronym that I’ll explain below) for dealing with Emotional Regulation—the strategy is taking care of physical illness (that’s the P).

The P in PLEASE stands for taking care of physical illness.

I was in my general practitioner’s office that Monday morning. I was totally worked up. I have been up with panic attacks at least three times the night before and I was using over-the-counter sleep medication to get any rest at all. Even worse, my blood pressure was up to 182/ 81. I think this was my personal best!

After listening to my tale of woe – about going blind, taking a leave from work, not being able to drive, and, on top of everything, having my mother-in-law in intensive care – my general practitioner prescribed psychotropic medication to help me deal with my anxiety.

DBT stresses that you have to take care of physical illness in order to deal with emotional distress. I am not a big believer in medication but having a stroke was not going to help the situation.

I accepted that I needed the prescribed medication to help control my panic.

The S in PLEASE is sleep. I wasn’t doing a lot of that but I needed to. I had never given it a lot of thought but, take it from me, losing your vision is exhausting. The emotional stress of losing your vision is exhausting. That is one thing but just trying to SEE is another. It has been taking me three and four times as long to do basic tasks like reading my mail. I have a reputation for being a high-energy-and-always-on the-go woman. It amazes me that in the last few weeks I have started taking naps.

The S in PLEASE stands for sleep.

The first E in PLEASE is proper eating. One does not eat well when she is in crisis. In fight or flight mode, the digestive process is shut down so the blood can go to the limbs. Before I started on my medication, I had no appetite and when I did eat, it sat undigested.

The problems with being in fight or flight mode were two: first this was not some short-term problem. This crisis was going to last for a while. And two, what was I going to fight? Where was I going to flee? Better to interrupt the process so I could get proper nutrition. After all, every army marches on its stomach and this was going to be a protracted campaign.

The E in PLEASE stands for proper eating.

For you curious sorts who wonder what the A and the second E are (the L is part of the word Physical; I did not forget it), I will inform you. The A is to avoid mood- and mind-altering drugs. That has never been one of my problems, but it might be a problem for some of you. Remember that drugs and alcohol work in the short run but in the long run, your problems are still there and often worse. Escaping with drugs and alcohol is not going to allow you to learn skills to deal with your problems and they certainly will do nothing for your Macular Degeneration. End of lecture.

The A in PLEASE is for avoiding mood- and mind-altering drugs. Not one of my problems but I’m informing you of it.

The E is one of my favorite things in the whole, wide world…exercise! A little autobiographical note here. I have, in at least one aspect, lived my life backward. I was an intellectual in high school and college. Never did any physical exercise that I was not absolutely obliged to do. That changed when I was in my mid-20s and discovered STRESS. The one thing that helped to relax me and let me sleep was exercise and I was born again. It is true there is no greater zealot than a convert. I will witness to you any time you like. I may also witness to you when you don’t like.

The E in PLEASE is for exercise which is one of my favorite things in the whole, wide world.

So, be that as it may, this time of the year, I generally take Zumba, hip hop, yoga and walk. Exercise is an amazing stress reliever and great for calming crazy emotions when you are in crisis. Even though my vision had gone to serious crap, I continued my classes. I have had to. Friends and my exercise have been my lifelines.

When some people hear that I am legally blind in one eye and nearly legally blind in the other, they assume I cannot dance anymore. Not the case at all. Macular Degeneration affects your central vision. If I concentrate on looking at something off-center of the instructor, I can see the moves with my peripheral vision just fine.

Even though my vision had gone to crap, I continued my exercise classes.

People also think I am not able to navigate on a walk. That’s not true either. Keeping my head up and focusing on a spot a bit beyond where I am walking, I can see what is at my feet. The peripheral vision is still there.

When I walk, I can use peripheral vision.

Then there is yoga. Sorry all of you exercise haters, but totally blind people do yoga. ‘My’ yogini is hands-on and will physically correct your alignment, etc. I have worked with another yogini who is about 100 pounds and will literally climb on you! Yoga is great for flexibility, balance, strength and even endurance and can be done by people of all ages. Yeah for yoga!

Totally blind people do yoga. Yeah for yoga!

So, trying to keep myself from being a screaming, crying basket case, I practiced what I was preaching and used the PLEASE skills from Marsha Linehan’s Dialectic Behavioral Therapy.

I also used ABC and Master from DBT. A is accumulate positives; I got out there and had fun. I walked to the park with my yoga instructor and her two daughters. I contacted a friend and went to a blues concert. These may have been just pleasant interludes that don’t do anything to help my eyes but they helped my soul.

The A in ABC means accumulate positives. I got out there and had fun.

B is for building mastery. My job is very visually demanding. I never realized how often I needed to use my eyes. My vision was there and taken for granted. Yesterday I tried to do something I have done thousands of times over the last 38 years. It was a debacle. I cried whatever is left of my eyes out. Tried again today and it was better.

Also today, I started to use Siri on my iPad for my searches. She found something I was wondering about. Minor triumphs matter and I am trying to celebrate them.

The B in ABC means build mastery. I started to use Siri for my searches.

The C is for cope ahead. Basically, this is a positive imagery technique. What do I imagine? I see me lecturing on Macular Degeneration to Lion’s Clubs and other civic organizations. This is, of course, after I have become the most successful lab rat in the history of Wills Eye Hospital and have written a website that is turned into a best seller for people who are suffering from AMD. There IS life after your macula does a mass extinction worthy of the Jurassic period or whenever the dinosaurs ceased to be.

The C in ABC is for cope ahead which is a positive imagery technique. I imagine myself the most successful lab rat in the history of Wills Eye Hospital.

Do these strategies always work? Hell no. I want to be back at work. I want to drive. I want to read a paperback mystery cover-to-cover in a weekend like I used to. Screaming and crying, frustration and disgust have been part of my life recently and I suspect they will continue to visit. The skills may not be 100% effective but I will take all of the help I can get at this point.

Do these always work? Hell no, but I will take all the help I can get at this point.

Written February 2016. Reviewed September 2018.

Continue reading “Teacher, Teach Thyself”

It Just Happens

Technicians are not supposed to tell you what they are seeing on your testing. But if you are paying attention, you know. The banter gets less, the smiles are forced. You get told “good luck” as you leave the room. They don’t tell you but you know.

My ophthalmologist was somber. My retina photos from four months ago were up on the screen, my new ones were below them. What would have been a divot four months ago was now a crater on my retina. My macula looked as if it had been bombed. In my mind, it was catastrophic, sudden self-annihilation. My vision had gone from 20/50 to 20/125 in what I believed was two weeks time. This was my left eye. My right had lost ground but not as drastically. Just the same, for all intents and purposes I had become legally blind.

My macula looked as if it had been bombed. It appeared to be catastrophic, sudden self-annihilation. I was legally blind.

The obvious question was how the devil this could have happened. My ophthalmologist had seen it before, but only in the very old. He conceded I was too young for this to have happened but yet it did. He had no theories. Perhaps I should go back to Regillo. Maybe call the local agency for the blind.

He conceded I was too young for this to have happened but yet it did.

Not knowing why something has happened has never sat well with me. Here I was with questions and no answers and pretty much no way to get the answers. To use the Internet you pretty much have to be able to see.

I contacted a dear friend (who just happens to now be the editor of this website) and put her on the case. Findings were sparse at best. Some sources suggested maybe/perhaps high blood pressure had something to do with it. Most of the sources, however, had no theory at all. The general comment was it happens.

It just happens.

Written in February 2016. Updated September 2018.

Continue reading “It Just Happens”

What Do I Do Now?

So, since this is all about me, let’s talk about me. The week following my ski trip, my vision went to hell. I am an avid reader and had just purchased two paperback books by best-selling authors. I had not touched the one and had 30 pages to go in the other. It was that fast that I lost my ability to read standard print. Before I gave up on the paperbacks I was standing in the middle of the upstairs hallway directly under a light. It was all I could do to make out what I was reading.

My vision went to hell-all of a sudden, I couldn’t read standard print!

I am a professional Psychologist but that means something different for me than it means for the general public. I am an assessing psychologist. I administer and interpret all sorts of tests. Intelligence tests, adaptive behavior tests, achievement tests, personality tests – this word ‘tests’ has been my bread-and-butter for 38 years.

One of my jobs is as a School Psychologist. I was not able to see the testing material. Fourth graders with reading problems started to correct me. There was a real problem here.

Fourth graders with reading problems were correcting me.

I sent a note to my ophthalmologist. I told him nothing was working. I wore my contacts with my glasses. Did not help. I wore my glasses with bifocals. That did not help either. There was something very wrong.

I was also noticing an exacerbation of other symptoms. I was having trouble recognizing people. Earlier, if I looked at someone, my right eye was doing pretty much all of the seeing. Looking at them with my left eye only, their faces would white out. Now, unless you were within 6 feet of me, I could not see you. Your face was simply a white blob.

I was having trouble recognizing people.

Click on the photo to get a larger version

A wild thing that was happening I learned later is called Charles Bonnet Syndrome which causes visual hallucinations. I have had trouble recognizing what I was seeing from a distance. Walking the dog and looking across the field, I would often comment that I was seeing something but I had no idea what the hell it was. The dog generally wasn’t very helpful unless it turned out to be another dog. The rest of the stuff she refused to identify for me.

I would see something and not know what the hell it was or would see bunnies & kitties that were not there or would be plastic bags stuck under trees.

Anyway, Charles Bonnet Syndrome hallucinations involve this interesting phenomenon in which your mind tries to make sense of what it cannot properly see. I started to see weird shit. Nothing scary. Just nothing that made sense. Definitely, nothing that was actually there.

When I discussed this with a friend at work, she was laughing at me. The reason for this was that I seem to see a lot of bunnies and kitties that simply were not there or were plastic bags stuck under trees. I guess she considered that if I had to have hallucinations it’s nice that they are of something pleasant.

But not everything about the sudden change in my vision was anywhere near pleasant. In addition to the excessive problems I was having doing anything vaguely related to reading and close work, I started to have panic attacks.

I started to have panic attacks.

People who know me were sort of surprised that I started with panic. I defended myself to my boss by telling her that they were ambushing me in my sleep. This was true. I could use some mindfulness techniques and distractions, which we will discuss later, to keep the panic at bay during the day but my defenses were down at night. I was waking up to three times a night in a state of pure terror. It was this internal alarm system that made me make an emergency appointment with my ophthalmologist. I had been trying to wait until my regular appointment the next week but I was not going to make it. There was something very wrong. It had to be taken care of immediately.

I was waking up to 3 times a night in a state of pure terror.

Written February 2016. Updated September 2018.

Continue reading “What Do I Do Now?”

A Perfect Storm

January 31, 2016 was a breathtakingly beautiful Winter day. I know it was January 31 because I still have the ski tag on my jacket.

That day I drove to Wilkes-Barre and had lunch with a friend. I was able to read the menu. I was able to navigate the roads.

I left lunch and went to a local ski area where I had a glorious, three-hour session of skiing. The sky was bright blue with not a cloud to be seen. The snow was a glittering white. The air was mild but not mild enough to make ‘spring conditions’ also known as slop.

I wore my sunglasses constantly. Of course I wore my sunglasses. I knew I had macular degeneration and that’s part of the drill. My sunglasses were red and matched my jacket. Even we old ladies with eye problems like to look good on the slopes.

Of course I wore my sunglasses. I knew I had macular degeneration and that’s part of the drill.

Later, my husband insisted it was photostress that destroyed my macula. He believed the day on the slopes and the reflection on the snow was just too much for my eyes to handle. My optometrist and ophthalmologist did not agree but there is that lingering doubt.

A quick detour here to talk about photostress. Photostress is, exactly as the name suggests, the stress that light puts on your eyes. When the photoreceptors make ‘light into sight’, they deplete a chemical, basically a pigment, that has been fed to them by the RPEs. Remember those Servant cells that take care of the photoreceptors? To my understanding, photostress happens when the light is eating up so much pigment that the RPEs cannot keep up replacing it.

If you have ever gone ‘snowblind’ you understand what I’m talking about (although snowblindness is caused by something different).

In the past I have had trouble with photostress. I walked from the car to the building housing a yoga festival. I had forgotten my sunglasses but did not think much of it. I stood in the lobby for five minutes–blind.

There is a photostress test in which they purposely make you go blind and see how long it takes you to recover. It would appear that recovery time is the key variable here.

Recovery time is the key to knowing how serious the photostress is.

If you’re reading this website just because you have nothing better to do or out of curiosity, if you do not yet have a diagnosis of retinal disease and you become blind after coming in from bright light with long periods of recovery, get thyself to a reputable eye doctor. It is very possible you have the beginnings of a retinal disease. That’s the public service announcement.

If you become blind after coming in from bright light with long periods of recovery, get thyself to a reputable doctor.

Written February 2016. Reviewed September 2018.

Continue reading “A Perfect Storm”

Super Lab Rat

So now I am reasonably sure I have a shot at becoming a test subject. Never really believed one of my greatest ambitions in life was going to be to become a lab rat. However, I can assure you I had ambitions to be the best damn lab rat Wills Eye has ever seen. My visual gains will be extraordinary! I will become spokes-rat for the program and travel around the area doing the ‘rubber chicken’ circuit. I will be brilliant. (Did I happen to mention I have no problems generally with my self-esteem? Perhaps…can you spell megalomania?) I even designed my t-shirt. It includes a drawing of a cute little mascot that will, of course, represent the hospital for decades to come.

I will be the best damn lab rat Wills eye has ever seen! I’ll become spokes-rat for the program and travel around the area doing the ‘rubber chicken’ circuit.

I did continue my research. I wanted to know what exactly I was getting into. I’m not one for invasive procedures or even for a lot of ‘doctoring.’ However, assuring vision for myself in the future tended to trump all other considerations.

Although Regillo tended to gloss over some of the more gory and unpleasant details, I wanted to know. My source was the 2015 Lancet article on the Phase 1 experiment.

Let me go off on a tangent here for a moment. Until I got into this, I had no clue what happens in clinical trials. Short tutorial if I may: clinical trials are made up of four phases. The first phase is a safety and tolerability phase. Essentially, the researchers are looking to make sure that nothing serious goes wrong. They want to make sure that no one has an allergic reaction or grows stray body parts where they should not be growing.

In Phase 1 they want to make sure no one has an allergic reaction or grows stray body arts where they should not be growing.

After Phase 1, the efficacy experiment starts. They want to see how their treatment actually works. Does it do what they claim it will do? They also start messing around with different independent variables to see what works best. In the study I am trying to get into, for example, they are comparing different immunosuppressant drugs to see which one works best. In other Phase 2 experiments they compare slightly different operation procedures or any more of the dozen of different treatment variables. All Phase 1 studies use only a very small number of people, Phase 2 studies use many more.

In Phase 2 they want to see how their treatment actually works.

As I understand it, Phase 3 studies are essentially larger variations on Phase 2 studies. Techniques and procedures are refined and the subject pool is made up of hundreds or even thousands of people.

In Phase 3 they perfect the techniques and procedures on more people.

Phase 4 is sort of like an off-Broadway show or traveling company. Instead of just being administered by people at the experimental sites, the procedures are now made available to other professionals to try. Reports are made back to the original team. By this time, the subjects can number in the thousands. Once a procedure gets through Phase 4, it is ready for prime time. If good enough, it can become standard procedure around the globe.

In Phase 4 they make their procedures available to other professionals to try at other locations.

Written February 2016. Updated 2018.

Continue reading “Super Lab Rat”

The Man Behind The Curtain: The Wizard of Wills

For a rock star of retinas, Regillo, was not all that imposing. I finally got to see the man after multiple tests by multiple technicians. Towards the end of the gauntlet, I asked the girl if everyone went through so many tests. She confided in me that many people do not get as far as I got. That was certainly encouraging. My inner voice had been telling me I was on the right track. The stars seem to be aligned. However, this was the first outside confirmation that I had chosen a good path.

I had chosen a good path. The stars seem to be aligned.

When the good doctor came into the room, I was studying the scans of my left eye–not quite sure why, but he appeared to be amused. Perhaps this was highly unusual behavior in a patient with Age-Related Macular Degeneration.

Regillo proceeded to challenge me to tell him what I saw. So I told him. The lower area was Bruch’s membrane. This membrane is the connection to the proverbial greater world. It brings nutrients to the RPEs and takes away the garbage. The level above that contained the RPEs. It also contained yellowish piles of eye poop more appropriately known as drusen. Level above that were the photoreceptors. The divot in the top was geographic atrophy and the reason I was there.I might have impressed him. After all, I am more than just an impaired eyeball.

I am more than just an impaired eyeball.

Strange, staccato, conversation followed. I told him I wanted to read the article on the phase 1 results when it came out. It was out and he gave me the citation. I told him I had every intention of being in phase 2. The conversation was a bit of a tennis match. At times we are even finishing each other sentences. I felt as if we were definitely on the same page.

Also, talking to the doctor I felt as if we were in a cat & mouse game and I was the mouse. He seemed overly interested. No, not that way, I felt like I was prey but in a professional, scientific way. It was like he had found a live one. After reading the phase 1 results that were published in Lancet last winter, I figured out why. The mean age of the cohort for the phase 1 study was 77 years of age. The team was planning on doing a 15 year longitudinal follow-up on the study. There was now no confusion in my head as to why Regillo was looking at me as if I were a live one. Hell, in 15 years, with subjects like that, I was going to be the only live one!

The mean age in the phase 1 study was 77 years of age. That means in the 15 years of the study, I was going to be the only live one!

Written February 2016. Reviewed September 2018.

Continue reading “The Man Behind The Curtain: The Wizard of Wills”

Where All Roads Lead

So, did I mention that I was told there is no cure? Those of you with wet macular degeneration can be given shots. They actually sound rather disgusting but seem to work. The purpose of the shots is to slow the growth of new veins. This will help reduce the bleeding in the eye.

Dry macular degeneration has no cure. That is, it has no cure yet. Having the personality I have, taking “no” for an answer or taking “I don’t know” for an answer is simply unacceptable. That was why I put so much effort over last summer into finding another way out of this mess.

I don’t take “no” or “I don’t know” for an answer.

Fourth of July, 2015 was a rainy, dismal affair. For some unknown reason I picked that miserable day to throw myself a pity party. I sat imagining what it would be like to be blind. I sat imagining what it would be like to be handicapped and pretty much alone. After about four hours of this, I got bored. Blind was not for me if it was going to be so damn boring. Consequently, I made a decision. I was not going to go blind and if I were to go blind, I would crash and burn in the most spectacular fashion you have ever seen.

If I were to go blind, I would crash and burn in the most spectacular fashion you have ever seen.

It was after this bit of epiphany I started to seek treatment in earnest. My ophthalmologist told me probably the best chance of a cure was in stem cell therapy. However, stem cell therapy on eyes was in its infancy. They had run so few people through the procedure there was no way of knowing for sure what was going to happen.

I was sure of one thing: Age-Related Macular Degeneration results in central blindness. There are no maybes. It will eventually happen. Enrolling in a study would give me a chance. The chance maybe only 1% but it was 1% more chance than I had doing nothing.

AMD results in blindness of the central vision. I was sure of this one thing.

Also, when you hit a certain age, some people like to leave a legacy. One of the developmental psychologists had a name for this stage in life but I don’t remember what it was [Editor’s note: Erik Eriksen] Essentially, this time in my life is one during which I should give back. I should lead those who are younger. I should contribute. This was going to be my chance. Great secondary gain. I wanted to save my damn sight.

I wanted to save my sight but I also wanted to lead those who were younger.

There are sometimes I believe the Universe—capital U–is showing me the way. I would look at eye drops and come back to stem cell research. I would look at oral medication and come back to stem cell research. I would look at laser treatments and, yep, come back to stem cell research. The writing in the stars was pretty obvious. I was going to get into that study one way or another.

The study I chose was a stem cell study replacing dead and worn out RPEs. This particular study is being done on both coasts. At UCLA medical center the lead researcher is Stephen Schwartz. The lead researcher on the East Coast is Carl Regillo.

The lead researcher for the stem cell therapy is in Philadelphia which is a day trip for me.

Never heard of him until I started doing my research. Then I realized the man is a rock star of retinas. Regillo has over 700 publications to his credit. He has been named to the best physicians in America list at least eight years running. But just about the best thing about Regillo? He is practically right in my own backyard! Regillo is a mover and shaker at Wills Eye Hospital in Philadelphia. Philadelphia for me is a day trip. Even better, the good doctor has an office in Bethlehem, perhaps about 2 hours away. Yet better, I got an appointment within three weeks of asking and they took my insurance! So far, it does not get any better than this.

Carl Regillo is at Wills Eye Hospital in Philadelphia & has an office in Bethlehem, perhaps 2 hours away. And I got an appointment within 3 weeks of asking & they took my insurance. So far, it does not get any better than this.

Written in February 2016. Reviewed September 2018.

Continue reading “Where All Roads Lead”

Resources

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

2/14/2022 Because of the rapid and constant growth of our Facebook group, I cannot keep this list updated. I have a large amount of information available in the Facebook group in Guides which are like chapters in a book or lessons in a course. Plus, in 3 years, the amount of information in the posts and comments is quite substantial. I recommend that you join us there where you can get the information and the support to help you in your journey. Thanks for understanding. Hope to see you there! Lin/Linda…

I’ve added some pages from that group that might be of interest to you.

Frequently Asked Questions

Click here for the list of Frequently Asked Questions from our Facebook group.

AREDS2-based Supplements

There are several pages on the site that explain what AREDS2 means and who the AREDS2-based products are for. Click here to go to a list of articles.

AREDS2-based Supplements With 0 or 25mg of Zinc

Click here for the list.

Navigating

There are a lot of links here. I’ve set up this page so that when you click on a link (words that are underlined & in blue or green), a NEW tab will open in your browser and this page STAYS WHERE IT IS. When you are done with the new page you opened, just close it. You do NOT need to use the back option. If you click on a link and the new page replaces this one, I’VE MADE A MISTAKE so please let me know by sending me an email at light2sight5153@gmail.com. Let me know exactly which link or links do not open a new tab or window.

Errors: If you click on a link and you get a ‘page not found’ error, please let me know by sending me an email at light2sight5153@gmail.com. Let me know exactly which link or links do not open a new tab or window.

Additions: If you have a link you’d like to add, please email at light2sight5153@gmail.com.

Topics-click below to move to a topic

Links We Like
See what vision is like at the various stages of AMD
What is AMD?
Glossary
Websites devoted to AMD and Other Forms of Macular Degeneratin
Websites containing information about AMD and Other Forms of Macular Degeneration
Support groups
Where to find services
Books & reading materials
Videos
Personal stories of living with AMD
Online newsletters
What is Stargardt’s Disease?
Science Stuff
Symptoms
Risk factors
Treatments
Research/clinical trials
- How can I become part of a clinical trial?
Coping with vision loss
Self-maintenance/ self-care
More to come…

Links We Like

Click here for a GREAT resource where you answer some simple questions and you get a customized guide based on your responses
Click here for a great glossary
Click here for Low Vision Resources: A List of Lists (such as 8 ways to slow AMD, 15 tips for family and friends, etc)
Videos
- Click here for several videos
- Click here for the UK Macular Society’s Say Hello to Mac
- Click here for one that uses illustrations and animation (explains how wet AMD progresses and how the injections work)
Click here for a description of dry vs. wet AMD (we are not recommending any products in this article)
Click here for an article about depression after diagnosis
Click here for a very comprehensive page about wet AMD
Click here for a very comprehensive page about dry AMD
Click here for a FAQ (Frequently Asked Questions) that answers a long list of questions such as ‘will resting help my eyes?’, ‘Can I see for myself if my retina or macula shows any signs of damage before I have symptoms?’, ‘why don’t new eye glasses help?’, ‘what is meant by degeneration?’, ‘is a macular hole the same as macular degeneration’, ‘I have had dry MD for years. Does this mean I’m going to get wet MD too?’, ‘No one else in my family has MD. Why did I get it?’, ‘can drusen be treated?’, ‘I have changes on the Amsler Grid, does this mean I have MD’, ‘I have Wet MD but my Doctor says there is nothing he can do or no treatment available. Why is this?’
Click here for a short introduction to stems cells, what they are and how they can be used.

See what vision is like at the various stages of AMD

Click here to find ways to see simulations of what vision loss due to AMD is like at various stages.

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

Thanks!

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I’ve added some pages from that group that might be of interest to you.

Frequently Asked Questions

AREDS2-based Supplements

AREDS2-based Supplements With 0 or 25mg of Zinc

Navigating

Topics-click below to move to a topic

Links We Like

See what vision is like at the various stages of AMD

Glossary

Websites devoted to AMD and Other Forms of Macular Degeneration

Websites containing information about AMD and Other Forms of Macular Degeneration

Support

Message Boards including ones from

By postal mail

Start Your Own

On the phone/telesupport

Where to find services

Resources for Students

Books and reading materials

Specific Titles

Sources of Books

Videos

Personal stories of living with AMD

Online newsletters

What is AMD?

Wet Form

Dry Form

How fast does AMD progress?

What is Stargardt’s Disease?

The Science Stuff

Role of RPEs

Geographic Atrophy

Symptoms

Charles Bonnet Syndrome/Visual hallucinations

Other problems with vision & AMD

Risk factors

Age

Diet/nutrition (working on this section)

Race

Gender

Uncontrolled high blood pressure

Uncontrolled high cholesterol

Smoking

Blue Light

Eye Color

Aspirin & other medications

Other possible causes

Connection between AMD and Alzheimer’s Disease

Treatments

Injections for Wet AMD

Telescopic implants

Are there new treatments in the pipeline?

Vitamins (see Self Maintenance/Self Care section below)

Research/Clinical trials

How can I become a part of a clinical trial?

Gene Therapy

Bionic Eye/Retinal Implants

Nutritional Supplements

Stem Cells

Coping with low vision

Low Vision Aids

Wearable Technology

Suppliers of low vision aids

Financial Help