Category: Newly Diagnosed

My First 100 Days: Part 1 Hopelessness?

Good afternoon! Got my exercise in – Zumba and a dog walk – and expecting a thunderstorm presently. I like storms. It may sound sort of crazy but I like knowing there is a powerful universe out there. I also like knowing Someone out there cares enough to shelter me.

But enough of weird philosophy. I really should not do it. I am a conscientious objector to people stepping too far out of their expertise. I once went to a Ricky Martin concert and he started talking about his vision for the world. No. We don’t ask the Dali Lama to shake his ass and we don’t ask rock stars about philosophy!

OK. Enough, but in a weird way that leads around to something I do want to talk about: hope. Lin wants me to do a retrospective. I am coming up on 100 days post vision loss and it seems appropriate. The thing is I don’t just want to do a chronicle. I do have half an idea. It will probably turn into several pages. (Half an idea turning into several pages? Yes, I can pile it up! ?) Let me try it and see if it flies.

According to my day planner all hell broke loose between January 31 and February 12. That is less than two weeks to go from totally functional, sighted person to hot mess. I was having MAJOR panic attacks. I knew what they were. Part of my brain very dispassionately identified them but my autonomic nervous system was off to the races. The girl was in a bad way.

I have had some people tell me quite candidly they would want to commit suicide if they were going blind. Well, thank you very much! Should I take that as a suggestion?

The thought of suicide never crossed my mind. Not that it is an uncommon thought. Not that it is not understandable. It is just that suicide and hopelessness are closely linked and so far I have not been hopeless.

To lecture a bit here, suicide.org says hopelessness is a feeling that conditions will never change. There is no solution to a problem.  Dying would be better than living. So far I have managed to skirt around that.

Why? To begin with, I had done my homework. You can say what you like about science and technology but, damn, they are doing incredible things. I had met Regillo and read what he and his team are doing. Not to put undue pressure on those folks, but my money is on them!

Being a special education professional, I was already aware of assistive technology. I knew there are people out there whose job it is to help people like us. I contacted them.

I also have had people who believe in me. How can things be hopeless if people I trust are telling me I can do it? They may have been delusional, but I probably owed them a try.

OK. Back to my lectern!

Again, thoughts of suicide happen. They are often a reaction to a feeling of hopelessness. They are not shameful but they are wrong. The old adage says “suicide is a permanent solution to a temporary problem”. Even if our vision loss is not temporary, even if science does not find a cure in time for us, even if we never have our vision restored, there is still hope for better functioning.

If you are feeling suicidal, get help. Tell a friend or family member.  In the US the number for the national suicide prevention hotline is 1-800-273-8255. In the UK it is +44(0)8457909192. I think. I never understand foreign telephone systems. Our friends in the UK, could you post the number, please?

I guess that is a start. Onward on the retrospective or maybe I should say “forward to the past!” Anyone own a DeLorean? [Have you seen the movie Back to the Future? The DeLorean is a car that is the time machine in the movie.]

Continue reading “My First 100 Days: Part 1 Hopelessness?”

Are You Depressed?

I have been stood up so I guess I should use my time wisely…..

In a recent post I  talked about the stages of loss and depression. The most recent Macular Degeneration Partnership (amd.org) bulletin has an article on depression. Seems like a hot topic recently. A lot of people getting depressed with Age-Related Macular Degeneration.

Thinking about it, I realized I had not defined depression. I don’t think the Partnership people did either. Could have missed it, but I don’t think so.

To start, I want to state plainly and simply, depression is not a dirty word. It is not a weakness. It is not something that has to be suffered and denied because ‘real men’ do not have mental illness.

 All right, so I am picking on you guys but the simple fact of the matter is that women are a lot more apt to seek treatment for mental health concerns than men are. You guys might as well own it. You think depression is a weakness and many of you would not be caught dead in a place like this, a counseling center.

So what is depression? We may say we know it if we see it, but maybe we don’t.

The DSM’s full name is Diagnostic and Statistical Manual of Mental Disorders. It’s the book professionals use to classify mental illnesses. We are up to number 5 of these manuals but what I have at my finger tips is my ratty, falling apart, well-loved copy of IV-TR. It’s sort of a revision of the fourth edition. My 5 is at home right now.

No matter which version you are using depression is defined as having some basic characteristics.  There is ‘depressed mood’ which is basically feelings of sadness. In children – and yes, in some men I have noticed  – you may get irritability and anger. OK, OK it can happen in women too, but I have not seen the foul, angry mood in women as often.

The second characteristic is ‘anhedonia’. That is a fancy name for nothing being fun any more. “Want to go fishing, Gramps?” “Nah, it is not that much fun any more. You go without me.”

Third we have ‘physical symptoms’. Changes in eating or sleeping habits can be signs of depression. It does not matter which way. Increases and decreases are both considered to be symptoms.

The same goes for ‘activity level’. Some of us get very lethargic and spend most of the day in bed or just sitting around. Others of us become agitated and always have to be moving. This moving around often does not get much done. Agitation, not goal-directed work.

‘Fatigue’ is a big symptom of depression. Everything is just too much effort.

AMD can lead you to question whether or not you have any value. It may lead you to feeling unworthy and guilty about being dependent upon others for so much. These are symptoms of depression, too.

Depression will really cloud your thinking. Thinking ‘straight’ and being ‘sharp’ become a lot more difficult when you are depressed. Some people chalk this up to senior moments and old age but that may not be it at all.

The last symptom listed in the DSM is ‘thoughts of death and suicide’. Thinking your family and the world would be better off if you were gone is wrong-headed thinking that can be brought about by depression.

If any of these symptoms sound like you or someone you know, it is time to seek help. Get to your doctor. He can help you find help.Medications, counseling and support groups are valuable in fighting depression. Feeling bad is not a requirement of AMD.

Which brings me to one more quick point before I quit. I have had clients tell me their situations are really terrible and it is unrealistic to try to look on the bright side. Hard, cold reality really is hard and cold. Normal people are delusional!

I tell these clients they are exactly right. Studies have proven depressed people often have a better handle on the facts. Their world view is often more realistic….but it is nowhere near as much fun. It also does not help you put one foot in front of the other as easily.

In any case, putting on rose-colored glasses and joining in the delusion is not a bad thing. So, let’s hear it for Pollyanna!

Continue reading “Are You Depressed?”

Taxman

[For those of you who don’t know, the title is an homage to the Beatles 1966 song Taxman.]

Sue wrote this in 2016. She updated and added to the information in 2017 in her page It’s That Time – Tax Time Again!

Let me preface this with another disclaimer: I am not an accountant. I know next to nothing – that is zero, not a thing, nada – about taxes. I am writing this as a heads-up for people because, frankly, I had not given this a lot of thought and I bet some of you have not given it a lot of thought either.

Disclaimer: I am not an accountant and I know nothing about taxes. This is just a heads-up.

So, heads up! As my friend the accountant reminds me, it is tax season! That friend as well as the accountant who does our taxes both mentioned to me a little vein of silver in this gray cloud of visual impairment.

There are tax breaks for the visually impaired.

[The documents referenced below are for the tax year 2017).]

Click here for more information on the tax breaks for disabled taxpayers. This is an IRS document called Tax Highlights for Persons with Disabilities. [Lin/Linda: this document is for 2017 tax returns. The one for 2018 is not out yet.]

Before I get into what I have learned with limited research on the web, I would encourage you to get help from a professional or at least someone who hopes someday to be a professional. I googled ‘free tax preparation for the visually impaired’ and I found the IRS webpage Free Tax Return Preparation. With any luck, you should be able to find free tax help in your area. Within five miles I can get free help from accounting students at the local college. Within 25 miles there are seven places I can get free help with my taxes.

I would encourage you to get help from a professional, or at least someone who hopes someday to be a professional. The IRS has a webpage where you should be able to find free tax preparation in your area.

Reminder: I know nothing. Check it out for yourself on the websites I am expecting Lin will link to this post. Go to a professional. What I THINK I discovered in my browsing this morning is that taxpayers who are ‘blind’ are able to claim a higher standard deduction. This can be without itemizing.

Click here for the IRS list of their accessible forms & publications such as forms & how-to videos.

Those of us who are working can itemize and claim expenses that are directly linked to materials and services that are needed to keep us working in light of our visual impairment. I am talking about ‘toys’ (see previous post) as well as things like a driver or transportation service.

Click here for the IRS 2015 Publication for Medical and Dental Expenses for 2017.  A quick search shows that you can deduct medical expenses for things such as guide dogs/ other service animals (buying, training & maintaining) and Braille books & magazines. Also, check out the section Impairment-Related Work Expenses.  You may be able to deduct the cost of the ‘toys’ you use for work.

Those of us who are not visually impaired but have a visually impaired spouse or other dependents may also qualify for a tax break. For example, if your spouse is paying for someone to come in the afternoon and make your lunch because you are not able to do it yourself, that could be a deduction.  You’ll find it in the documents we’ve referred you to under Child or Dependent Care Credit.

If you have a visually impaired child or spouse, you may qualify for a tax break called Child or Dependent Care Credit.

The budgeting.thenest.com website mentions, of course, basic medical expenses as being deductible. The site also mentions things like the difference in cost between standard print magazines and those same magazines in Braille. It does not say anything about large print magazines and books but I suspect a case could be made for those.

In short, heads up! Check it out. Get free help if you are unable to navigate it all yourself. There are some tax bennies for being visually impaired.

Written March 2016. Updated September 2018.

Continue reading “Taxman”

Toy Story, Too

This is Toy Story, too. Sequels are not just for the movies.

Just like all roads led to Regillo, pretty much all ‘toy’ recommendations being given to me are for Eschenbach products. I am not telling you they are the best. I have absolutely no basis for comparison because I have tried very few other low vision products. I am just telling you these are the ones I have tried and so far, I like them. I like them. (This is not a paid endorsement but if anyone out there is with Eschenbach, we could talk business!)

My reader is a Smartlux Digital Video Magnifier. It is easy to use. The reader has 5x, 7x, 9x and 12x magnifications. You can hold it in your hand or prop it up on its little ‘kickstand’.

Sue's Eschenbach Smartlux Digital Magnifyer
Sue’s Eschenbach Smartlux Digital Magnifyer

There is no handle on the Smartlux like there was on the first reader I tried. That reader was all right, but as many products I have had to endure over the years, it was prejudiced against the left-handed. I could hold it in my right hand and there was no problem but the instant I switched it to my left hand, it would collapse on me.

Now, this is fine because, like I said, I have endured the effects of prejudice against us ‘sinister’ people and I am stronger for it. Just remember, when the lefties of the world take charge – as we rightfully should – the reader, the scissors, etc. will be made for the other hand. You have been warned! 🙂

OK. Moving right along….my reader has stop action. In other words, it takes a picture of what it is seeing. This is good in the grocery and a variety of other places. For example, you can stick the reader in the frozen foods case and not have to stick your face in there. Take a picture and you know what you are reaching for. Helpful considering I bought three pot pies I did not like the other week. Oooops.

The reader also has different colors and contrasts. I am uneducated about other eye disorders but I would assume seeing a yellow or a red background, for example, is helpful for some people.

Oh, by the way, most CCTVs have the contrast feature, too. I tend to mention what is relevant to me and gloss over some of the other stuff. Mea culpa, again.

The other thing I want to cover in this post is the pair of telescopic glasses I am trying. These are also called MaxTV but they are not clip-ons (clip-ons are available). I think the clip was bad on the MaxTV clip ons I was trying because they kept falling down every time I moved.

Sue's Telescopic Glasses, view 1
Sue’s Telescopic Glasses

One of the cool things about these seriously funny glasses is that they are adjustable. There are little wheels on the sides that move the lenses closer or farther away from one another.

I have been practicing with these telescopic glasses. I was using them to try to find my husband and the cart in Giant Food. When I found him, though, I had a little accident. I dropped six cans of tuna fish on the floor. Six different cans going in six different directions. It is important to remember that things appear closer than they really are when you are using telescopes. I really thought I was dropping the cans in the cart. One of the indignities of visual impairment.

It is important to remember that things appear closer than they really are when you are using telescopes.

Remember, as my father used to say, “do as I say, don’t do as I do.” The telescopic lenses are not for moving around. You are supposed to be stationary. Bee-bopping around the market is not the proper use for them…even if you have been running up and down the aisles with your hands full of tuna fish for the past 15 minutes and think you will never find him.

If anyone tells my optometrist/low vision specialist I have been doing this, I will deny it! I repeat, “do as I say, not as I do.”

That is it for my toys for now. Recognize that all of these products are rather expensive. I would refer you back to the post about the App Store for free and inexpensive alternatives to these. While the magnifier apps on my iPad mini are not as good a quality as the products I mentioned here, the price is right – often free.

It has come to my attention from the Macular Degeneration Partnership that most devices are not paid for by Medicare.

An approximately $400 iPad mini and free apps may do you well as an alternative if the price of other assistive devices is prohibitive.

Written March 2016. Updated September 2018.

Continue reading “Toy Story, Too”

Toy Story

This is a toy story. Yesterday the nice delivery person in his reindeer-brown truck brought me a present. What I got was a state-of-the-art, high-end closed circuit television system. This is also known as a CCTV.

I have been practicing on loaner CCTVs from Blindness and Visual Services (BVS). The models I have used thus far are older – one is 1987; this is not new technology – and not high-definition.

The model I will be getting for my very own – as soon as BVS and I pay for it and make ownership official – is pretty awesome. It is called the Magnilink Zip. It is marketed by Low Vision International which is somehow connected with Eschenbach. These are apparently both Swedish companies and they are doing great things for us with visual impairment. My handheld reader is also an Eschenbach.

The Magnilink Zip has a 17-inch screen. It has a camera that can be focused on either a document on the reading table or can be flipped around and focus on things out in the room. I was told this is a popular model with students because it allows them to see their professors and what is being written on the board.

I would like to reverse that and watch my students in DBT class.

The camera is high-definition as is the screen and the picture is incredible. Very sharp and clear. Magnification goes from a minimum which I estimate to be about 5x to 26x. Looking at something with 26x magnification is pretty wild. Not sure why anyone would need it, but it is there if you do.

The big reason I went for this particular model is it is portable. I work in several different places and do a lot of work from the house. I could put three or four lesser quality CCTVs in all of my offices or I could have just one that goes around with me. The Magnilink Zip folds up small enough to fit in a carrying case that most people are able to carry slung from a shoulder. The whole thing weighs between 15 and 20 pounds.

I work several different places and do a lot of work from the house.  I can carry the Magnilink Zip with me.

All in all, not a bad piece of machinery at first sight. I am looking forward to actually ‘road testing’ my Magnilink Zip in the office really soon.

I do need to tell you the big drawback with the Magnilink Zip. That is, the machine is approximately $4000 for the top of the line model that I have. This one has all of the bells and whistles because I will be using it for work. They also make less expensive models with smaller screens and less portability. There may be a model that is more in your price range that will still fit your needs.

Click here for Low Vision International and Eschenbach.

That’s it for now. I might feature more of my toys in another post. There are lots of options out there and I hope you will be able to find the right toys for you.

Written March 2016.  Updated September 2018.

Continue reading “Toy Story”

Soothe Thyself

Change is stressful. Even good change is stressful. This is my second week back to work. Right now it is only part-time but that is enough. Less than two months ago I was working 50 hour weeks and thriving on it. Now I come home after a 7 hour day, three days a week and I am wiped out. What the hey?!?

Change is stressful.  Even good change is stressful.

This is obviously something I want. I would not be trying to go back to work unless I really wanted it. It is not something I have to do; it is something I want to do. It is getting easier the more I do it. I am relaxing a little bit just in knowing I am capable – with the help of a lot of good people and my ‘toys’ – of doing the job. My stamina is building. But until I get my groove back and my stamina built, what do I do with all of this STRESS?

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?

DBT looks at self-soothing through all five of the senses. We need to find ways of being gentle and kind to ourselves, comforting and nurturing, and we can do that through the five senses.

Self-soothing is not in the head. It is in the body because that is where the stress is stored.

The first of the senses we will discuss is vision. Well, yippee. Not seeing too well here. How can I be calmed visually?

My AMD is not all that advanced – Thank God. I have peripheral vision. I am also capable of looking at something big, like the sky with clouds, and have that sight fill most of my visual field. Most of the sky with clouds is being seen by the rest of my retina, not the macula. (There are times I will look at something big like the sky just to remember what it is like to see something without a chunk in the middle taken out). Watching the clouds blow across a bright, blue sky is a self-soothing experience for me.

Is there something that you can see that is self-soothing for you? If not, don’t worry. There are four other senses you can fall back on.

How about hearing? Some people like easy-listening or slow, classical music. I am a child of nature so my favorites are from the outdoors. Right now it is getting dusk and the birds are getting ready to roost. Can you hear the robins chirping? Day is done and it is time to rest.

When the sun goes down and the birds are quiet, I can just hear the frogs calling in a wetland nearby. If you don’t live somewhere you can listen to nature, there are recordings of natural sounds that you can download on your computer.

What sounds are calming for you? Listen to them and sooth yourself.

Smell is a great sense. It is very attached to emotions and memory. Even if I could not consciously remember my childhood, for example, I would know it was happy. How, you may ask? Crazy as it sounds, two of my favorite smells are hot tar and creosote. I was raised in a new, 50s era neighborhood with new telephone and light poles (creosote treated) and tar and chip roads. In the heat of the summer, the air was redolent with hydrocarbons. Other people may think they stink, but I love them. They are the smells of my childhood summers.

Which all goes to say, a smell that soothes one person may send another gagging to the bathroom. That’s alright. Smells and their effects are very personal because they are connected to memory and emotion. The olfactory center of your brain sits very close to the emotional brain and the memory center. In this case it really is a matter of location, location, location.

So what smells are able to calm you? While you can get a variety of essential oils that are supposed to be soothing, you don’t have to go the commercial route. Creosote and hot tar may work just as well.

A smell that soothes one person may send another gagging to the bathroom.

So that is three senses. The last ones are, of course, touch and taste.

A friend bought me a gift certificate for a massage when everything went south with my eyes a couple of months back. Massages are wonderful, but they are expensive. If you are on a limited budget you might want to put lotion on your feet or take a nice, bubble bath. Last evening when I was stressed and a little pissy, I went upstairs and took a hot bath with vanilla shower gel. Did the trick. Other ideas would include putting fresh sheets on the bed or putting on a plush, wooly sweater. Curl up and be engulfed in your favorite chair. Pet the dog. Run your fingers along the satin on the blanket.

There are a lot of ways to self-sooth with touch. Find one that works for you.

The last of the senses is taste. A lot of us can get in trouble with taste. I want to self-sooth so I eat the entire Boston cream pie. Wonderful on the lips but not so much on the hips, huh? Moderation and savor are the two key words here. Get one expensive chocolate and see how long it can melt in your mouth. See how many different flavors you can taste. Roll it around in your mouth and make it a multisensory experience. Not only taste that chocolate but feel it and smell it as well. Self-soothing with taste is not about the quantity of food but about the quality of the experience.

Moderation and savor are the two key words here.

So I am listening to the birds calling before night falls. Outside, I am looking at the sky and watching the clouds. I can feel a light, cool breeze on my face. I am not tasting anything, but the smell? Well, I guess it is Spring. It was a stressful day, but I am winding down with my self-soothing skills. It is going to be a restful night.

Written March 2016. Reviewed September 2018.

Continue reading “Soothe Thyself”

Pecked to Death by Ducks

As I posted a few pages ago, I am back to work a few days a week. I had naively hoped that everything would be good and everyone would be in my corner. Note the word ‘naively’.

I am not the me who was doing this job several weeks ago. Remember the woman who was able to see what she was doing? I have made some dumb mistakes I never would have made if I were still totally sighted. It’s damnably frustrating, not to mention embarrassing. While I have a steep learning curve and have vowed not to make those particular mistakes again, I anticipate I will be making other mistakes and facing other challenges.

I have made some dumb mistakes that are frustrating and embarrassing.

Locally, people are great. My coworkers are supportive.  My bosses are good. Just a little scared they may have taken back someone who will not be able to do her job. News flash: there are times I am afraid of exactly the same thing. My Blindness and Visual Services (BVS) and low vision people rock. I have all sorts of cool toys to help me. For a government agency, BVS is moving at the speed of light to get me set up with what I need. No complaints locally.

Local people and services are great!

I have contacted two large publishing houses about my need for some things in digital format. You can enlarge things when they are on your tablet, don’t you know. What I thought was going to be a simple “Hey, help me out here” seems like it is turning into a corporate run-around. They keep suggesting I purchase digital versions of materials that are, in some cases, not even on the market yet. And what, pray tell, am I supposed to do about serving my clients in the meantime? Good customer here! Cut me a break.

I’m a good customer of 2 large publishing houses and yet they want me to purchase digital materials that they should be happy to supply me with for free.

But screaming about – and at – people who don’t get a good deed is not only good for the soul but also good for business and that is probably the topic for another post. Right now I want to go back to DBT and talk about how I can get through the frustration without blowing a fuse.

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.

DBT has skills that will help me deal with frustration without blowing a fuse.

I is for imagery. Imagine yourself someplace calm and peaceful. Take your mind on vacation somewhere you felt wonderful. Go back to that safe place where nothing ever hurt you. These places do not have to be real anywhere but in your head. My favorite place got washed away in a flood in 2004. Just the same it still exists in my head. I can go back to the ol’ swimmin’ hole any time I want as long as it is in my mind.

Imagine yourself someplace calm and peaceful even if it is not anywhere real.

M is for meaning. Viktor Frankl was a German Jew. During his time in several of the Nazi death camps, Frankl, a neurologist and a psychiatrist, spent his time ministering to his fellow prisoners. He had a purpose and a meaning to his life. Frankl also discovered the prisoners who did the best and were able to survive the camps were those who had a purpose and saw their lives as having meaning. Frankl said that people who have a ‘why’ can survive any ‘how’.

Perhaps there is meaning to your life, meaning to what is happening to you. A meaning I put to my life, my disease, is believing I will get into the clinical trials and help to find a cure for AMD. What is your purpose? Find your ‘why’ and you will more easily endure the ‘how’.

I have found a purpose to my life with the disease…what is yours?

P is for prayer. Some of you have a strong faith and some do not. It has been said there are no atheists in a fox hole. Therefore I will assume that, no matter what your religious beliefs, many of you pray.

The Serenity Prayer is nice. So is the 21st Psalm if you are of a Judeo-Christian faith or even if you are not. The Prayer of St. Francis is also good (“Lord, make me an instrument of thy peace…”). You can make one up. It is up to you.

Prayers are basically of three forms: “HELP!”, “thanks” and “nice job”. When I am in troubled times, such as now, I use the “HELP!” type of prayer a lot. However, “thanks” and “nice job” prayers are good because they remind you of what all is going right. Thanks and praise allow us to realize we have accumulated many positives. They have just been forgotten in the face of a crisis. Remember Accumulating Positives is an Emotional Regulation Skill.

There are wonderful prayers out there.  You can even make one up.

R is for relaxation. Relaxation can be anything from a massage to a hot bath to meditation or any one of hundreds of other things. What relaxes you? Indulge. Just make sure it is not a habit that will eventually be hurtful to you.

What relaxes you?

O is for one thing at a time. I adopted an expression many years ago, not even sure where I first heard it, but the expression is ‘being pecked to death by ducks’. What it means is you are being assaulted by a dozen little things at one time and you feel as if you are succumbing to the cumulative effect of the onslaught.

Some days we are just being ‘pecked to death by ducks’. We spin from peck to peck and never actually deal with any one of them. DBT says to deal with one of those unfriendly fowl at a time. You cannot fight a war on too many fronts. Decide where to put your resources and win that battle first. Then go on to the next battle.

What do you do when you are being ‘pecked to death by ducks’?

V is for vacation. Vacation, unfortunately, does not always involve flying to some sun-drenched beach in the tropics. In DBT terms a vacation can be as simple as drawing a hot bath and locking the bathroom door. Hang a sign: “I am not available to deal with any crises for the next 20 minutes. Please check back later.” Remember, as much as we wish it would be, DBT vacations are not running away to Bora Bora and making a living beach combing. They are short and assume we will get back to dealing with things within a minimum of 24 hours or so.

Finally, the E is for encouragement. Get out those pom poms and cheer your favorite player – yourself. Be the Little Engine That Could. Celebrate your progress.  Remember it is important to acknowledge how far you have come. Praise yourself for still being in the fight. Be in your own corner.

Be the Little Engine That Could.

Those, quickly, are the IMPROVE skills from DBT. They are used when there is nothing else you are able to do that moment to solve the problem. You use them when either circumstances are not right or you don’t have the energy to deal for another minute or when you are overwhelmed with the chaos. I hope you find them helpful.

Written March 2016. Reviewed September 2018. Continue reading “Pecked to Death by Ducks”

Mind Weeds

I teach mindfulness. Sort of funny when you consider I am a queen of stray thoughts. Stray thought and mind weeds.

Not sure who gets to decide that something is a weed. Consider the dandelion. A weed to many but the dandelion is bright yellow and cheery. It is a harbinger of summer. You know it is summer when your yard is full of dandelions.

Who gets to decide that something is a weed?

Dandelions are often the first flowers we pick. They are a sign of love. I suspect that when many of you gave your first bouquet to someone, it was bright, yellow dandelions offered from a chubby hand.

You can do a lot with dandelions. When they go to seed, you can blow them off and chase the little parachutes as they fly away. If you put your thumb in exactly the right place, you can sing “Momma had a baby and his head popped off!”  Pop! The flower will fly right into your victim’s face.

Dandelions can be eaten. I have never eaten any but I understand they can be quite good with hot bacon dressing.

Possibly most importantly, dandelions are tenacious. They are survivors. There are thousands of people who make a living trying to get rid of dandelions and the other ‘weeds’. That there is an army out there trying in vain to get rid of them is a testimony to how tenacious they actually are.

Dandelions are weeds to some but to others they are harbingers of summer, signs of love, little parachutes to chase and quite good with hot bacon dressing.

So, in short, I like weeds. I like their defiance in the face of those who would make everything ‘nice’ and status quo. I think the world is a better place with a little wild.

Which is a way of leading into – and justifying – this post. This post is a collection of mind weeds and stray thoughts. If you know me, you know the mind goes a lot of different places. Get ready and try to keep up.

This has been a busy week and I have done a fair amount of wondering. I spent Monday at the medical center waiting for it to be time for my appointments. I had to connive to get two on the same day. I really believe they should write a program that actually coordinates your appointments so that you are not spending your life running to the doctor! Why has this not happened?

Why can’t appointments be coordinated so you can see two doctors in one day?

Short of that, they should have a mile’s walk marked off. Maybe an arcade or a game room somewhere in the facility. I had a book and my handheld reader, but still those places are boring if you have to hang around for a few hours.

Why can’t medical facilities have walking paths, arcades and game rooms?

My handheld reader caused a stir in the waiting room of my optometrist/low vision specialist. An older gentleman was enthralled with it and had never seen one before. All of the older folks around us were craning their necks to get a look at the handy dandy little machine I had. I gave the man a copy of a vision aids catalog I had been given. He had no idea any such thing even existed. Why not????

Why don’t a lot of older people with low vision know about low vision aids?

My optometrist/low vision specialist said – first of all – those who are not ‘stable’ are not told about vision aids such as that. My first thought was being pleased I had been called ‘stable’; doesn’t happen that often. Of course she meant visually stable. Oh well. But the why question stands. Why aren’t people actually being made aware of what is out there and available? My little reader certainly has made things better for me.

Why isn’t everyone with low vision made aware of what is out there and available?

She also said I was getting great service from BVS.  Blindness and Visual Services is a branch of the Office of Vocational Rehabilitation (OVR). The goal is to get me back to work. Great. I want to work. I want to work because it will improve the quality of my life. What about the quality of that man’s life?

I also asked her why I had never seen anyone wearing the funny, clip-on glasses I had been given to try. I don’t believe any one else has seen anyone wearing them either. That thought is based on the weird looks I got wearing them in Walmart.

Why have I never seen anyone wearing the funny, clip-on glasses in Walmart?

She said she has recommended/sold them for years but people don’t wear them. Why? Does it have something to do with acceptance of the truth of the disability? Vanity? Inquiring mind here.

Why not make use of something that would actually help?

I saw my general practitioner, too. The last time I was in that office I was working myself into a stroke. It was early on, just after my Macular Degeneration did what I had been assured it would not do. Namely, go south like the first drop on a roller coaster.

Anyway, he was happy to see I had not stroked out and I had stopped having panic attacks. He thought it was great that we have been working on this website and thought he might refer some of his macular degeneration clients to me for counseling. I said I would consider it because I have at least visited the territory if not lived there for very long. Then it dawned upon me. I am not allowed to take Medicare as payment!  Wrong degree. Government regulations. I could probably do some good with the visually impaired population.

Why would Medicare not be willing to pay me?

Another time this week I went to see my ophthalmologist. The appointment was sort of rushed because his wife was in labor (and no, the baby’s head did not pop off!) He was pleased with my not developing wet AMD and – once again – with my being ‘stable’. Ha! Twice in one week.

They dilated my eyes that day. Has anyone had ‘pebble glass’ vision after their eyes were dilated? My optometrist/ low vision person said it comes with the AMD. Weird. I had never had it before my eyes got bad. I felt like I was looking at an impressionist painting. Why?

Why was I seeing ‘pebble glass’ after my eyes were dilated?

So that is pretty much it for rambling  – least for now. I am tilting at windmills on a few other fronts. Not sure I will win but I intend to be heard. I have been having successes and failures, but those are for another post. I just hope the mind weeds I have scattered – like dandelion seeds – have taken root somewhere.

“You see things and you say ‘Why?’, but I  dream things that never were and I say ‘Why not?’  ” – George Bernard Shaw

Written March 2016. Reviewed September 2018.

 

Continue reading “Mind Weeds”

How to Win Friends & Influence People the DBT Way

In a recent post, I talked about using skills to get what we want and need without damaging our relationships with others. In DBT speak they are called Interpersonal Effectiveness Skills.

If you are anything like me, you were used to being independent. If no one did it for me, I did it for myself. Now I find myself in the position of asking for favors, asking for help. It is aggravating and depressing; yes? Yes! DBT has skills for getting what you want without alienating people and, just as importantly, saving your self-respect. None of us like to grovel or beg. Too old for that nonsense.

It’s time to learn skills to get us what we want without alienating people.

The acronym is DEARMAN. DBT has a lot of acronyms.

D is for describe. You describe the situation in nonjudgmental terms. Be objective. Good: “I have a visual impairment and I cannot read the menu board.” Not good: “How do you expect anyone to read that board? The print is too tiny!”

Describe the situation in nonjudgmental terms.

E is express feelings or opinions about the situation. Remember not to be judgmental. Good: “I really hate to inconvenience you…” Not good: “This place has no consideration for older people!”

Express feelings or opinions about the situation in nonjudgmental terms.

A is for assert wishes in a clear, concise and assertive manner. Good: “Could you please read today’s specials to me?” Not good: “Read me that damn special right now!”  Remember assertiveness and aggression are not the same things.

Assert wishes in a clear, concise and assertive manner.

R is for reinforce your request, and more importantly, their compliance. Good: “Thank you so much. I really appreciate the help.” Not good: “Well, amazing! You can read.”

Reinforce your request and their compliance.

M is for mindfulness. Stay focused. Don’t get sidetracked. Good: “I would be happy to let you seat me after I know the special.” Not good: “Seat me next to the window. Get me a coffee….WHAT is the special???? I don’t like THAT!”

Stay focused, don’t get sidetracked.

A is for appearing confident. Believe you will get what you are asking for. Convey that you deserve respect. Good: use a strong voice. Not good: Mutter, stammer.

Appear confident.

N is for negotiate. In order to get, you have to be ready to give. Good: “Do you have a comment box at this restaurant? I always like to let management know when I get good service.” Not good: “Do it. It is your job to wait on me!”

Negotiate and remember that in order to get you have to be ready to give.

DBT also promotes persistence. That is calm, goal-directed persistence. It is called the broken record technique. “I would like you to read the special to me…please read the special to me…could you read the special to me….what is the special?”

Be persistent but calm.

I found a quote a while back: “Rudeness is the weak man’s imitation of strength.” -Eric Hoffer. Remember that. Remember it not only when you are frustrated and want to be rude but when someone is rude to you. There are days that this vision loss gets to you big time. There are days you run into seemingly every idiot in the world. Mark Twain said: “Never argue with a fool. Onlookers may not be able to tell the difference.” Don’t engage with people who are rude or simply trying to get your goat (and exactly where did THAT expression come from?). Not engaging is a show of strength. Engaging gives the idiots power. There are ways of asking for help, getting it and still maintain self-respect. DBT calls them Interpersonal Effectiveness.

Don’t engage with people who are rude, engaging gives the idiots power.

Written March 2016. Reviewed September 2018.

Continue reading “How to Win Friends & Influence People the DBT Way”

I’m Baaacccckkkk!

I went back to work this week. It was only part-time and may be part-time for the foreseeable future, but I am back. I think.

I have been told I set a land speed record in getting back to work. I don’t see it as anything extraordinary. Everyone has something they have no intention of giving up for a disability. A lot of people don’t want to give up driving – ever! Others insist upon playing golf or attending church every week. I want to work. I pretty much need to work.

I have done this job for 38 years. It is my profession. In many ways it is my identity and my purpose.

I am a fortunate person. Instead of a cloud of misfortune, ‘dumb luck’ has followed me around pretty much my entire life. When I stop to consider how fortunate I have always been, it is a little unsettling  – when is the tide going to turn? However, I try to give thanks for this crazy, incredible run of good fortune whenever I can.

I have been fortunate to have the help of a lot of good people in getting back to work. My husband takes me in and a friend drives me home. Blindness and Visual Services (BVS) has helped to fill my office with ‘toys’. I have a CCTV and a handheld reader as well as a zoom feature on my computer. My low vision specialist has me trying ‘funny glasses’ that magnify and either allow me to read or – another pair – to look over a classroom full of kids. Thank you.

I’ve been fortunate to have a lot of help in getting back to work from my husband and others driving me to and from work and from the people getting me my ‘toys’.

People on the job have been very supportive. The custodian set up my CCTV. The computer person has been scanning materials onto a tablet so I can enlarge them.  I have literally been welcomed back with open arms by many staff. Thank you.

Very importantly I have been welcomed back by the administration. I am being given a chance to prove myself. They have been willing to work with me even though things are going to be a bit ‘different’ from now until I am either retired or forced by the disease or finances to go on disability retirement. Thank you.

I’ve been welcomed back by my co-workers and the administration. Thank you.

As I said, I have always been fortunate.  Not everyone gets to work with the kind of people I work with, for example. I have not once had to utter the phrase ADA but maybe you will.  ADA is the Americans with Disabilities Act. As much as it is hard for me to wrap my head around it, I now come under this act. Damn.

The ADA says no employer with 15 or more employees may discriminate against an employee based on a disability in any aspect of employment. The law stipulates that both the employee must be able to perform essential functions of the job and that the employer must make reasonable accommodations in the workplace. The employee and his reasonable accommodations must not create undue hardship for the employer, his business and his clients.

The American with Disabilities Act (ADA) has laws governing the rights of the disabled employee and the employer in companies with 15 or more people.

There are a lot of other things associated with ADA. For example, these are the laws that gave us ramps and cut curbs. However, I will be staying with this simple information in this posting. Follow the links if you are looking for more.

How does ADA affect me? I am back to me with all of my cool toys.  At least for now. I have told my boss to watch me. How am I doing? Am I making mistakes? Am I too slow?

My ‘undue hardship’ would fall squarely on my students. Not having that. That is why I’m back…I think.

I’m back to me with my cool toys and under the watchful eye of my boss.  I won’t let my students be affected by my ‘undue hardship’.

Written March 2016. Reviewed September 2018.

Continue reading “I’m Baaacccckkkk!”

Sim City for Low Vision Folks

I have already written a love letter to Amazon. Today I am going to write a love letter to the Apple app store. So, I’m fickle. Shoot me.

There are some cool, free things in the App Store. I downloaded a magnifier that uses the camera on my tablet to take images and enlarge them, for example. However, today I want to talk about the Macular Degeneration Simulator.

People are great. I said that before but it bears repeating. People are great but unless AMD has touched them directly they have not a clue what it is. You know how people hear ‘visually impaired’ or ‘centrally blind’ and all they think about is total sight loss! People have a lot of wrong ideas about what is going on with us AMD folks.

People are great but many hear ‘visually impaired’ or ‘centrally blind’ and all they think about is total sight loss!

I have had several people take my arm and try to steer me. Sweet and caring thoughts are behind the actions. However, I don’t really need that kind of help. I can still navigate pretty well and expect to be able to do it for some time to come.

Several sweet people have taken my arm to try to steer me but I can still navigate pretty well.

I have also had several people suggest I get a dog. To begin with, the beastie baby is used to being an only dog. Also, unless you can find me a dog that can read, tell me whom I am looking at and drive, I have no use for a service dog.

Like I said, people are great, but they don’t get this Macular Degeneration business. Enter the handy-dandy Apple AMD Simulator.  On your iPhone or iPad go to the App Store and search for ‘macular degeneration rnib’. RNIB stands for Royal National Institute of Blind People. [As of October 2018, the iPhone version of this app is NOT available but there is a version for the Apple iPad. Check the App Store on your iPad.]

I downloaded this app from the App Store. It is a great price: free. It has four settings: normal, early, middle and *shudder* late disease. The late simulation scares the bejesus out of me.

The Apple AMD Simulator has 4 settings: normal, early, middle and *shudder* late disease.

How I see is worse than early and less than middle. I went from basically normal to that in about two weeks time, but that was an earlier post.

I have been using the AMD Simulator to show people how I see. A fair number of them have expressed relief; they realize my vision is not great, but not as bad as they had feared (at least not yet). The late setting scares the bejesus out of them, too. It makes me feel good that they understand and feel better. Also, being an educator at heart, I feel good that I have been able to share some knowledge.

So there that is. If you have folks in your life who don’t get it, try showing them how you see. The AMD Simulator is in the App Store and it is free.

I highly recommend the free Apple app AMD Simulator to show folks what AMD actually is.

Written March 2016. Reviewed September 2018.

Attention Walmart Shoppers

I had two ‘firsts’ yesterday. Not that I had not done them each a thousand times before but these were the first times I had done them as the new – but not necessarily improved – me.

The first new thing I did was go into Walmart  – alone. I was not thrilled with the idea. As I said before, I cannot see faces and Walmart was full of people. What if I snub somebody again? Also the day before I had gone to Staples and had trouble with the credit card machine. Came out of there in tears. Something so simple and I had screwed it up!

Just the same, my husband was not going in with me, so I put on my big girl panties and sallied forth. Here goes nothing.

First thing, make sure you know where the car is, Susie Q. I have already walked up to strange cars at the dog park. If anyone had actually been in them it would have been embarrassing.

I got in the store and got a cart. I know Walmart and knew what I needed. The problem came when I had to read what was in the cases of frozen foods.

Now, sticking your nose on boxes of frozen meals so that you can read them is probably frowned upon by health officers. We won’t even discuss the possibility of getting your nose stuck! So, I did a little Radical Acceptance (DBT concept) turned my mind (DBT alert here!) and got out my near point clip-on magnifiers. Sigh.

clipons
These are my clip-on magnifiers. They look very much alike but the one on the left side is for looking at things close (called near point) & the other is for looking at things farther away (far point).

Turning your mind is a DBT concept that says acceptance of a problem does not happen in one fell swoop. Shazam! I accept that I am visually handicapped. Uh, no. Acceptance happens over a series of decision points. I did not get my clip-ons out at Staples. I did not accept that I needed them and turned away. Bad decision. In WalMart I decided I needed to turn towards the truth and accept that I needed the help. Sort of bite the bullet – a dozen times a day if necessary.

Acceptance happens over a series of decision points. I didn’t use my clip-ons at Staples but I need to use them at Walmart.

OK. So I have two pairs of really funky looking clip-on magnifiers. One for near and one for far. Let me tell you, people stare. They especially stare when I flip them up and it looks like I have…what? Antennae ?

At school I have been working on the problem by having class meetings. “This is why I look stranger than usual. ” “This is what this is.”  What am I going to do at WalMart? Put it on the PA: “Walmart Shoppers, Please do not stare at the strange woman presently in frozen foods.” ?

So, I put on the clip-ons and people stare. So be it. I was able to use the credit card machine. Score.

I even put on my far point magnifiers to find my way across the parking lot. Technically not supposed to do that. They are actually for TV viewing and you are supposed to be stationary. Having everything magnified messes with depth perception. However, I was able to find the car and did not run into anything.  Besides, the far point magnifiers make me undershoot, not over shoot. I reach for something and it is a foot beyond where I thought it was. All sorts of new problems. Sigh.

I used my far point magnifiers in the parking lot and did not run into anything.

I also took my far point clip-ons with me on my second new me first. I rode my bike! To get to the trails I use, I have to cross two fairly major roads. I “turned my mind” towards acceptance of my limitations and walked my bike across the roads. Did not want to but I wanted to be roadkill even less. Used my far point clip-ons to check for traffic. If the drivers stared, I could not see them.

Written March 2016. Reviewed September 2018.

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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.

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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.

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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.

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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.

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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.

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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”

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