News: CVS faces lawsuit for claim about a store-brand eye product

April 10, 2016

For those who have intermediate and advanced AMD, doctors recommend the nutritional supplement that came through 2 NIH research studies: AREDS & AREDS2. If you haven’t already done so, please read our post What about those eye vitamins?

The only product that has all the nutrients from the AREDS2 study is made by Bausch + Lomb PreserVision. CVS put their store brand supplement next to this one and labeled it “comparable to ongoing study formula in AREDS2.” A 91-year-old woman was diagnosed with AMD and the doctor prescribed the PreserVision product but because of the label, she switched to the CVS brand because it was half the price.

It is NOT comparable. To read the whole story, click here.

News: Smoking Makes Your Vision Poor Shows Research

April 11, 2016

Article from India:

With a surge in eye-related diseases in India, Ophthalmologist have said smoking is emerging as one of the major reasons behind vision-loss among patients. However, only 10-20 percent people are aware of it.

According to the doctors, several studies have shown that smoking increases the risk of age-related macular degeneration, cataract, glaucoma, diabetic retinopathy and dry eye syndrome.

Click here to read the entire article.

Guest Author: Lara on Beauty for the Blind

Beauty for the Blind by Lara

Lara is the Massage Therapist I’ve mentioned a few times. She’s been blind since she was about 6 months old.

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I feel that my article should come with a disclaimer. I am by no means an expert. This info is born out of 47 years of practice due to Lebers Congenital Amorosis (LCA). Everyone has different levels of vision loss and mine may be more or less than others.

Hair Styling

For me, the best invention that I have found thus far is a heated round brush. By this I mean that it is a combination of a blow dryer and round brush in one. This is used on wet hair. This allows me to style with one hand and use my other hand to feel what I am doing. This appliance gives off heat but not like a curling iron. Therefore you can touch anywhere around it and not be burned. It dries my hair and gives me a bit of curl.

I will say that the best resource for me has been a good beautician. I have talked with them and even brought my tools with me to my hair appointments and have challenged my hair stylist with specific questions about styling. My stylist has given me cuts that are easy to manage but that does not mean out of style or boring at all. In the case of my hair like anything else, I have to be assertive and ask for what I need and find a beautician that is creative and open to working with me. I confess I have had the same beautician for years so we both know what I can do. I do also believe that some good styling products can make this task easier.

I have used curling irons in the past, but have occasionally burned myself with them. The biggest obstacle to using a curling iron is not quite getting the barrel to the ends of the hair when curling due to not being able to see what I am doing. So, it just takes practice and attention to detail. My advice to anyone when it comes to orienting to a new hair appliance is to practice with it while the appliance is off so you can feel what you are doing without the risk of being burned. Another safety issue I have always been very aware of is where you place the appliance while it is heating. Since I run a high risk of tripping on cords or bumping things on counters I plug in the appliance and wait with it in my hand for it to heat up. There are special mats you can buy to protect surfaces that I am sure work well.

Make up

I am not going to lie, this is a true obstacle for me. I do not use much because I feel that the more I put on the more I run the risk of making a mistake and leaving the house looking like a clown. First I feel it is important to have the right tools. By this I mean a nice set of fluffy good quality brushes and make up sponges. The little skimpy things you get with the product are skimpy. I like a fluffy brush because it makes it easier to apply and blend. I also feel that a good set of round flat sponges and wedge-shaped sponges come in very handy.

I firmly believe that skin care is the basis for looking good. This does not mean spending a fortune. There are good lines of skin care that will not break the bank. I believe it is essential to have a good moisturizer with a sunscreen. I am also a fan of cc cream that can provide a bit of coverage and color correction without the risk of blotching. Next is foundation, I have used both liquid and powder foundations. When using a liquid I use my finger and placed one drop on my chin, each cheek, my nose, and my forehead. Then I use a sponge to bland each drop around my face. I spend extra time just buffing the sponge around my jaw line, temples and eyes. Since it cannot be felt I blend everything just to be sure. Presently I use powder foundation. I find the mineral based products to be easiest for me to use. I recommend taking the time to talk to a sales consultant or find someone trustworthy that has an eye for color to help match your skin color as closely as possible. Bear in mind that in the summer skin color can change due to tanning, so a summer foundation shade may be necessary. I am so very fair that I have to buy the lightest shade possible, so that makes it easy for me. When it comes to using powder, technique is essential. I use the swirl tap buff method. Swirl a nice large fluffy brush in the powder just a bit. tap your brush on the edge of your compact or your sink to shake off any clumps. Then use a circular buffing motion to apply to the face taking special care at the jaw line. Next is blush, I like to buy things in a set that is designed for my skin color. This cuts down on the guess-work regarding color choice. Again I like a powder for is ease of blending. I like a medium-sized brush for application. It sounds crazy but I suck in my cheeks before I begin application and feel where my cheek bones are in order to find the “apple” of my cheek. Then I load the brush and buff on that apple of the cheek. My rule is less is more. At this point I will also, without reloading the brush, sweep over each eyelid as well as my forehead. This functions as my eye shadow. The most important step is a translucent face powder that is applied last. This is key for me because it softens the whole face and catches any spots that may not have been blended enough. I recommend this step whether a liquid or powder foundation is used.

I confess, I do not do much on my eyes. It is too difficult for me and I would not feel confident without having someone check it before I go out. I have used a liquid eyeshadow that comes in a tube. I have just placed a small amount on my finger and begin at my eyelid and used my finger to apply it so that I can feel it and control where it goes. At this point, I follow with a sponge to blend. One of my favorite things for eyes is a clear gel mascara. I like this because if I make a mistake and get it elsewhere it can’t be seen. This is also something that takes practice. I have taught myself to feel for the gentle tug on my eyelash to know I am in the right place with the applicator brush. I have had many occurrences of the brush ending up in my eye because I have gotten too close with my brush. To help learn the feel, hold the brush close to your lashes and then blink. You will feel your lashes hit the brush. This will teach you the length or your lashes and how close you need to go to your eye without getting the brush in the eye. I love a curved brush for this if you can find it. You can apply as much as you want because it is clear. I also take it across my eyebrow and follow-up by smoothing the eyebrow with my finger. This can tame unruly brows if necessary.

Lipstick is easy. That is a feeling thing. However lipstick can also applied with fingers to ensure control. Here I also like using a tinted lip gloss which gives some color without an intense color. I then follow-up by taking my finger around the border of my lips to feel for anything that might have made it to the skin. A tissue wrapped over my finger can also be used to remove any wayward lipstick.

To me, looking healthy is the key to make up. That is my goal. Remember that color in clothing can also accentuate your look. This can make you look brighter without ever applying anything. Just picking the right top or a well placed scarf can brighten up the skin and add a glow.

Facial Hair Removal

This is a challenge. I do not do much with my eyebrows. I get that done by my beautician. I do not let her wax them. I feel most people take too much eyebrow off. I let her tweeze them each time I get my hair cut. Let’s face it ladies, as we age, pesky chin and upper lip hairs start cropping up seemingly overnight. I get rid of them by using an epilator. This is an electric tool that has rotating tweezers that yank those hairs out at the roots. I know, it sounds painful, however it is not bad on the face. I use mine on the lowest speed and it is essential to get the skin taut so you don’t catch your skin in the appliance. Yes, I learned that one the hard way. I find that easier than trying to use tweezers. I have scratched my skin and left it red and raw because of trying to catch the same hair over and over again by feel. A big word of caution. I would not use an epilator on eyebrows at all.

When I was younger I could see my own face a bit by using a lighted make up mirror. This was great at the time because

it also had a magnified mirror. So, that is a possible way to compensate if you can still see your own face. I cannot see my face at all now so I do make up and hair completely by feel. It can be done it just takes practice and the right tools. I hope this helps. Just remember the best make up and style is your own happiness and good health.

Click here for more tips on personal grooming.

Continue reading “Guest Author: Lara on Beauty for the Blind”

With a Little Help From My Friends

The title is another reference to music but you have to wait till the end of the page for it. 😉

Good morning again. Sunny Sunday here. Which might give me a reason to get a little spiritual and say “God works in mysterious ways” or maybe go a little A-Team and say “I love it when a plan comes together!”

First of all, I would like to thank three lifelong friends for making the trek from the old hometown to see me. We ate in a restaurant and our server was someone I know from my school job. Turns out her side job is elder care (elder? “Them’s fightin’ words, Pilgrim!”) and she would be glad to be a driver for me. Score!

The other serendipitous thing to happen was meeting my massage therapist, visually impaired for 47 years and a treasure trove of experience, the same week we got a question from a subscriber! Now I know whom to ask!

The question was more involved than this but it had to do with personal care. Specifically, how to remove unwanted hair. Contacting the massage therapist, I was told that is an easy fix. There is a machine called an epilator that quickly plucks hair like you do when you use a tweezer. [Lin here: I know it sounds painful but it really isn’t. I use one on my face & it is much less messy & painful than a cream depilatory or waxing.] I just went online to Amazon and there are 909 results for epilator. There is one that is $10 but it only got 3 stars. There is one by Remington that is a little over $25.00 and got nearly all five stars. [We get no money for endorsing any products from Amazon on anywhere else, these are just our recommendations.]

Of course, there’s more to personal care than this & we’ll come back to it. In the meantime, click here for a good article on shaving for both men and women.

There I go name dropping again. I have no idea whether the Remington is any good. All I know is what I read online, with apologizes to Will Rogers (“All I know is what I read in the papers and that’s an alibi for my ignorance.”). Although I also just found out Donald Trump said “all I know is what I read on the Internet.” Wonder if he credited Will? But this is NOT a political site, so onward!

The massage therapist, MT for short, said she would be happy to write a post on personal care and get it to me soon. As soon as we can, we will get it posted. Then she can have her own first name back, too!

Another thing the MT said she uses is a clear gel mascara. I had never heard of clear gel mascara but I can see the point. If you get it on your face it is clear and shiny and not a big, black smear. The MT uses Maybelline – oops, not an endorsement – but Amazon also has by Cover girl and a few others. Be careful on the Amazon site. It says 157 results but only the first 5 or 6 look as if they are actually clear.

Click here for a good article on Makeup Application for women with low vision.

Hope that helps. I am looking forward to getting posts from the MT. What we are trying to do on this site is mine real life experience, back it up with research if we can and HELP. Joe Cocker was right. OK. Lennon and McCartney were right, too, since they wrote it, but I like the Joe Cocker version. Lin, key the music, please!

Click here for Joe Cocker’s With a Little Help From My Friends Continue reading “With a Little Help From My Friends”

ChaChaChanges

Good morning. I don’t have to be anywhere until 10 this morning so I thought I could write a bit first.

First of all, I put something light-colored at the bottom of the steps. I need to get a nice rug but at the moment what I put there will do. I decided it was better to ‘turn my mind’ towards acceptance rather than turn an ankle as I nearly did the other day when I missed that last step. The contrast – just like my Vision Rehabilitation Therapist (VRT) said – helps me to see there is a change there. In this case the change is from the step to the floor, but it could be anything.

My VRT also suggested I put a white sheet of paper on my dark table at work. I am supposed to put anything dark – like my pens or my stopwatch – on the white sheet of paper. That way I will be able to find things I have put on the table a lot easier.

Tip 1: To provide contrast where there is a dark background, I put down a light-colored rug so I don’t miss the last step. To provide contrast on my dark-colored table at work, I’ll put down a white sheet of paper where I will put anything dark so I can find things easier.

Another thing the VRT suggested was ‘dots’. I saw these when I was looking through the visually impaired section at Amazon but I had no clue what they were. Apparently these dots are to place on things to get you oriented. The VRT said I could put them on the number pad for the microwave. Really anyway I would want to do it. Maybe a different color one each on the 1, 2 and 3 so that I would know where they were and then go down the columns from there. I don’t know about you, but when I first got ‘bad’ (‘bad’ being a relative term, of course), I incinerated a fair amount of stuff. These would have been helpful then and I suspect I will find a use for them in the future.

Click here to see an example of ‘bump dots’. You can get them in various colors and there are ones that are clear, too.

Tip 2: Get some ‘dots’ on anything that requires you to orient yourself. For example, I might get different colored dots to put on the numbers 1, 2, 3 on the microwave pad so I would know where I was & can go down the column of numbers from there.

Another thing she suggested was something we teach intellectually disabled students at school. It probably has a real name but I just call it the “1 plus” method. You put something in the microwave for one minute and then check it. If it is not hot enough, you put it in for another minute. It may get a little tedious but it can save on the grocery bill by keeping things from being burnt.

Tip 3: To avoid burning things in the microwave, I can use the ‘1 plus’ method which is to put something in the microwave for one minute and then check it. If it is not hot enough, you put it in for another minute.

My VRT wanted to give me a bunch of other stuff for getting around the house and doing the – gasp – domestic goddess routine, but since a) domestic goddess I am not and b) I am still able to do just about everything I need to do anyway, I asked her to hold off on that discussion until later. She said that her services would be available again as needed. Good to know.

Oh, one more thing, my VRT told me about a ‘pin code’. Telling me if the colors match has become a job for my husband but if you don’t have a handy person to make the call, my VRT suggested you get a consensus on whether something is black or navy and then ‘pin it’. She suggested one vertical and one horizontal but I suspect you could pin one right leg, one left or however you wanted to.

Tip 4: Since it’s harder now for me to tell if colors match, I can ask my husband to tell me if a piece of clothing is black or navy and I can ‘pin it’ by putting a pin in horizontally if it is black and vertically if it is navy. Or you could pin the right leg if something is black and the left leg if something is navy.

That’s about it for now. Have a good day!

Ps She gave me pens that won’t bleed through the paper (on a previous page, I had mentioned I’d been looking for some) but all they say on them is BVS. We don’t know the manufacturer but we are still trying to find out.

Click here for more tips on how to adapt your home.

Written March 2016. Reviewed September 2018.

Continue reading “ChaChaChanges”

Highlight: How can I adapt my home so I can be safe and independent?

It is so frustrating not be able to do things at home that you might have been able to do in the past and do safely.

Have you burned something on the stove or in the oven or in the microwave?
Have you twisted your ankle because you missed a step that you used to be able to see?
Are you able to find clothes in the closet that go together?
Have you poured orange juice over your cereal because you thought you had the milk carton which looks a lot like the juice carton?
Can you find the switch plates on the wall?
Have you fallen over furniture?
Have you burnt yourself trying to make a pot of coffee?
Have you tripped over dark-colored throw rugs on dark-colored floors?
Have you been unable to tell if the toilet seat is up so you’ve sat down in the toilet bowl?
Do you misplace the magnifying glass when you need to read the instructions on a medication bottle?

It’s true that even those with full sight have done some of those things, some of which are funny at the time, but it can be really serious for those with low vision.

There are some good tips for avoiding some of these things so that you can remain safe and independent. Here’s a good article with tips on:

finding clothing that matches
using the microwave control pad so you don’t burn your food
avoiding falls on floors, over furniture and down steps by providing contrast
chosing the right kind of lighting for the area and the task
putting lighting where you need it, inside and outside
cutting down glare that makes it more difficult to see
finding out what low vision aids are available for the home and where to get them
adapting each room in the house for your needs

Click here for a very complete guide Household Tips for People with Low Vision.

Click here to read about a book called Making Life More Livable. I’ve not read it. If you have & would like to write a book review, please let me know.

Do you have any other tips? Please leave a comment so we can share them with others.

News: Bicyclist’s family files wrongful death suit

March 28, 2016

Of course it is hard to stop driving when you are no longer able to do it safely. However, this is one reason to do so.

Bicyclist’s family files wrongful death suit

Never Say Always

While there is a lull in the action here, I am going to backfill and write a little bit on Dialectic Behavior Therapy. This is the stuff that usually comes first when we teach but I have been hitting skills as I have had to use them instead. Time to double back and fill in some of the holes.

First off, what the hey are dialectics? Dialectics assume there is truth in every stance/belief/opinion. Somewhere in what someone believes there is a grain of truth. Dialectic thinking has as a purpose moving us off of our previously inflexible beliefs and opinions, helping us to reduce our black and white thinking. By reducing black and white thinking and recognizing that everyone has some truth in what they think, we can move towards a common ground and find resolution to our conflicts.

Dialectics assume that somewhere in what someone believes there is a grain of truth.

For example, some people believe I am totally handicapped and need help with everything. They try to do everything for me. I would like to believe I am not handicapped at all and capable of doing everything I was always capable of doing. This black and white, all or nothing thinking can cause conflicts and stress. I get peeved when people do things for me I can do for myself. I am not helpless! Other people get peeved when I fumble and make mistakes because I am too proud to ask for help. You are so stubborn!

I would like to believe I am not handicapped at all and capable of doing everything I was always capable of doing.

The truth of the matter is somewhere in the middle. Can I do somethings? Yes. Can I do everything? No. Coming into the middle ground and agreeing there are some things I can do but some things I cannot do will reduce a lot of disagreements and stress. That is a dialectic.

So dialectics strive for balance. They move you away from the black and white. Does that mean you have to give up your moral code. Nope. Think about it; how often does your moral code get challenged? Most black and white sort of dilemmas are about silly stuff anyway. “I always take out the garbage.” or “You never empty the cat box!”

Can I do somethings? Yes. Can I do everything? No. The truth of the matter is somewhere in the middle.

Notice the absolute words in those sentences. Always and never are overused words. How often is something always? Always never? Dialectics try to steer us away from the use of absolutes.

FYI – must is another one of the words that does not go along with a dialectic point of view. I must keep driving. I must keep my own financial records. What happens when must meets cannot in those situations?

How often is something always? Always never? Dialectics try to steer us away from the use of absolutes.

Dialectics attempt to hold two things that are opposite or conflicting in balance. If you have lived to be old enough to have AMD and have lived a reasonably successful life, you have had a lot of experience with dialectics. How many times have you balanced wants and needs when budgeting? How about balancing needs for distance and closeness? For example, “Give Daddy time to relax and then you can tell him about your school project.” I would suspect you have been practicing dialectic thinking for some time and never even knew it!

So that is what dialectics are. Balancing two opposite things, recognizing the validity in each and moving towards the center for resolution of the conflict.

As you experience wants and needs, abilities and limitations related to your AMD, keep dialectic thinking in mind.

Written March 2016. Reviewed September 2018.

Continue reading “Never Say Always”

A Watch Hunt

I wish I knew where my watch is. I have looked under the bed and even stripped the bed. I shook out the blankets and the sheets. No watch.

I have moved everything on the bathroom vanity where I often carelessly toss it before I take a bath. No watch.

I have checked the pockets of everything I have had on in the last day, pants and jackets. Maybe it came undone and fell in a pocket. Nope. No watch.

My husband is sort of used to me losing things. He has been on ‘The Great Cell Phone Hunt’ several times. When I told him I had lost my watch his comment was “Really? What a surprise.” Smart Ass.

The simple fact of the matter? I am a slob. I am a piler. One of the major reasons – or at least a contributing factor – for my becoming a professional and not a domestic goddess is I hate to clean.

Now it is not the worst I have seen. Just about the worst was during a home visit on which I saw multiple piles of dried dog feces on the living room floor. No, it is not of the dried dog poop standard, but it ain’t good.

I like to have my ‘stuff’. Stuff ends up in piles. Things get lost in piles of V.I.S. – That’s Very Important Stuff, by the way.

When I was fully sighted I could dig through piles of V.I.S. and find what I was looking for. Now I may sort past what I am looking for and have not a clue it is there.

People are making ‘casual’ suggestions. Maybe I should get rid of some of my V.I.S. Maybe I should get better organized. Would it not be great to know where everything is? Let’s hear it for organization? Hmmmm

Right now there are a lot of ways I am working on inventing the ‘new me’. Not really liking it, but I have to keep ‘turning my mind’ (DBT concept alert!) and accepting that things have changed. Some of the changes I am being forced to make are minor and some of them are closer to the core. Intellectually – and as a DBT teacher – I know that I should work on accepting reality and changing attitudes and habits to meet that new reality. I also know that it is really hard to do at times. That is especially true when the changes have to be with things that are pretty close to the core self. After all, I have been a slob for 62 years and I kind of like it.

So I will ‘turn my mind’ and make some of the necessary changes. Later. Right now it appears I need another watch!

Written March 2016. Reviewed September 2018.

Continue reading “A Watch Hunt”

Sue’s Terrible, Awful, No Good Day!

Back to yesterday. I was frustrated. I was pissy. I was just about ready to sell my soul to be full-sighted again. Daniel Webster, where did you find that guy you bargained with?

I have always done stupid crap but since I have had vision problems I think I do more stupid crap. Yesterday the upstairs vacuum stopped sucking stuff up. There was a wad of dog hair that it had very neatly balled up and spit back out and that wad was sitting on the carpet. OK. Vacuum mechanic I am not, but maybe I can fix this.

I have always done stupid crap but since I have had vision problems I think I do more stupid crap.

To make a long story short, I took the thing apart looking for a blockage. Got confused and fed said wad of dog hair into the intake for the motor. Burning dog hair is not one of my comfort smells.

Stupid crap frustration moment 1.

Then, I decided to bite the bullet and complete the formal request form for the publishing house I have been cursing out for the past week. Have you ever noticed you NEVER fit in ANY of the boxes or is that just me? I think I have spent my life being ‘other’.

Essentially there was no way for me to fill out the form correctly because the needs the form was built to handle and my needs were very different. I ended up filling in the ‘additional information’ section with a ‘book’ about my problems and burning desire to get back to work and as close to ‘me’ as I could get. I was angry and resentful and frustrated and then there were tears. This round peg is tired of trying to fit into square holes!

Frustration moments 2, 3 and 4. Possibly even 5.

THEN I tried to print that accursed form off and the printer jammed. I did not see the paper jam was wrapped around part of the printer. Honestly, I did not. Do you think I would have pulled that hard and broken my printer if I had???? Pulled that sucker right off.

That was frustration moment 6.

The point has been made before: I am not a patient person. Before, in this circumstance I would have jumped in the car and cruised on over to Best Buy for a new printer. Uhhh, no car. Can’t drive. Husband in for the night. No printer.

Let’s get up to about frustration moment 9 here.

Top all of this off with a misstep on the steps. I have dark carpet on the steps and dark tile on the floor. Did not bother to turn on the stair light. Did not heed my habilitation person’s suggestion to use contrast. There is one more step than I anticipated. Came down on the side of the ankle but stayed upright.

That rounds it all off with frustration moment 10!

Since no convenient devil popped up to bargain for my soul – and let me tell you, I could have been ripe for it – I had to deal with myself. Bring myself down or it was going to get NASTY.

First thing I did was order a new printer on Amazon. Quickly replacing things may not be a financial option for many of you but thankfully it is for me. I replaced the thing so I would only have to deal with the frustration of no printer for a few days.

Damage control. What plan can you devise for damage control?

Then I went into the self-soothe skills. Chocolate ice cream is good. One dish, not the entire half-gallon. I cuddled with the beastie baby. I drew a hot bath and put in vanilla shower gel for a bubble bath. After that I put a dab of Vicks Vapor Rub on my chest and crawled into bed. Conveniently I had just changed the bed that day so the sheets were cool and crisp. I pulled the sheets over my head and smelled the Vicks.

Then I went into self-soothe skills. I ate chocolate ice cream, cuddled the beastie baby, drew a hot bubble bath, put Vicks Vapor Rub on my chest & crawled into bed.

Why Vicks? It is another comfort smell for me. It is the smell of being home sick from school and getting to eat chicken noodle soup and draw on the hot vaporizer with wax crayons.

So there you have it. Yesterday stank. Nobody rescued me so I had to rescue myself.

Remember, I not only teach DBT, I am a client. 🙂

Written March 2016. Reviewed September 2018.

Continue reading “Sue’s Terrible, Awful, No Good Day!”

Yesterday

I am typing this on my laptop because the tablet has decided to take a vacation today. Hopefully, this is not the next thing to go wrong.

Yesterday. To follow the Beatles theme, let’s just call this post “Yesterday”. But yesterday was not a day to look back on wistfully. It was pretty frustrating.

Like I said, I have great support. My Saturday morning ride to Zumba took me to class – Thank you! – and I noticed one of the ‘girls’ hadn’t been there in a few weeks, still not there. I knew she has been having health problems and sure enough, that was the reason my driver gave me for this girl’s continued absence.

It made me sad. Not just because she is having problems but also because the last time I saw her and asked how she was, this girl had refused to tell me. She said I had enough problems of my own and would not lean on me for hers.

I cannot speak for everyone who has AMD, but for me, AMD has not taken me out of the human race. I do care when friends and acquaintances are having problems and I do want to lend any sort of hand that I can. Sympathy is one thing but when it goes across the line to pity, I have a problem with it. I know that this girl was only trying to lessen my burden but sometimes we lessen our burdens by taking some of the burdens from someone else. I feel I need to be given the opportunity to CARE. How about you?

Sympathy is one thing but when it goes across the line to pity, I have a problem with it.

Being the educator I am at heart, I’m just going to add a little DBT here and finish the rest of my miserable, awful, no-good day venting in the next post. If you are struggling with your vision as I do without the reader, you prefer short posts and articles to read. Too much is too much, yes?

Back on track, DBT concepts here. I think that this situation may highlight the ACCEPTS skills. I see contributing (the first ‘c’ in ACCEPTS). We sometimes have to weather a crisis by getting out of our own problems and helping someone else. It gets the focus off of us. It gets us back into the human race and allows us to flex our compassion muscles instead of our self-pity ones.

We sometimes have to weather a crisis by getting out of our own problems and helping someone else.

The other ACCEPTS skill I see here is comparison (the second ‘c’). It really is true that misery loves company and people like to see someone who is worse off than they are (OK, so I am not always Little Miss Compassion). This girl is not able to take Zumba. I can! She is in physical pain. I am not. It could be worse.

It really is true that misery loves company and people like to see someone who is worse off than they are.

That is probably not the best note to end my plea for others to allow me to be compassionate towards them, but I suspect you get the point.

Kid glove handling not required here. Let me do the caregiving and support I can and was used to doing before my vision loss. Enough said.

Written March 2016. Updated September 2018.

Continue reading “Yesterday”

Highlight: Consistent checkups are important to eye health

March 25, 2016

This is a great article that points out that it is important to have your eyes checked regularly and that the timing depends on what’s going on with your eyes. The article makes 2 especially important points about a diagnosis of AMD:

Even though there is no cure yet for AMD, it’s important to catch it early since there are some ways to slow down the disease.
If a person is diagnosed with AMD, it’s a good idea for them to alert their children about it since there is a hereditary component to it.

Click here to read the rest of the article

Highlight: Patient monitors vision at home & results are sent to the doctor

Feb. 2016

Here’s a Press Release from Notal Vision, Inc., announcing that Medicare will pay for their ForseeHome telemonitoring system for patients who have dry AMD and who are at a high risk for it developing into wet AMD.

The ForseeHome system allows the patient to test their vision daily at home & the results are sent to their retina specialist for monitoring.

Click here to read more about the product.

Here’s a video showing how it works: ForseeHome AMD monitoring

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”

Welcome!

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

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

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

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

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

This website is divided into 4 parts:

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

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

Courses Coming Soon!

Thanks!

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

A Tutu and A Tiara

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

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

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

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

DBT has a technique called Opposite to Emotion. It is just what it sounds like. If you have an unhealthy emotion, act in the way you would act if you were having the opposite emotion. Behavior follows emotion but emotion also follows behavior. Not a new concept, Ignatius Loyola said something about performing the acts of faith and faith will follow. In other words: fake it until you make it.

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

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

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

Put on your tutu and your tiara and dance.

Written February 2016. Reviewed September 2018.

Continue reading “A Tutu and A Tiara”

Teacher, Teach Thyself

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

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

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

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

For the past two years, I have had the opportunity to teach the educational components of Dialectical Behavioral Therapy (DBT). Just by chance, the unit I was teaching was Emotional Regulation. If anyone needed emotional regulation at that time it was me. Teacher, teach thyself.

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

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

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

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

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

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

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

The S in PLEASE stands for sleep.

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

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

The E in PLEASE stands for proper eating.

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

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

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

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

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

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

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

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

When I walk, I can use peripheral vision.

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

Totally blind people do yoga. Yeah for yoga!

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

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

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

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

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

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

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

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

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

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

Written February 2016. Reviewed September 2018.

Continue reading “Teacher, Teach Thyself”

Resources

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

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

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

Frequently Asked Questions

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

AREDS2-based Supplements

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

AREDS2-based Supplements With 0 or 25mg of Zinc

Click here for the list.

Navigating

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

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

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

Topics-click below to move to a topic

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

Links We Like

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

See what vision is like at the various stages of AMD

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

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

Thanks!

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Like this:

Like this:

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

Frequently Asked Questions

AREDS2-based Supplements

AREDS2-based Supplements With 0 or 25mg of Zinc

Navigating

Topics-click below to move to a topic

Links We Like

See what vision is like at the various stages of AMD

Glossary

Websites devoted to AMD and Other Forms of Macular Degeneration

Websites containing information about AMD and Other Forms of Macular Degeneration

Support

Message Boards including ones from

By postal mail

Start Your Own

On the phone/telesupport

Where to find services

Resources for Students

Books and reading materials

Specific Titles

Sources of Books

Videos

Personal stories of living with AMD

Online newsletters

What is AMD?

Wet Form

Dry Form

How fast does AMD progress?

What is Stargardt’s Disease?

The Science Stuff

Role of RPEs

Geographic Atrophy

Symptoms

Charles Bonnet Syndrome/Visual hallucinations

Other problems with vision & AMD

Risk factors

Age

Diet/nutrition (working on this section)

Race

Gender

Uncontrolled high blood pressure

Uncontrolled high cholesterol

Smoking

Blue Light

Eye Color

Aspirin & other medications

Other possible causes

Connection between AMD and Alzheimer’s Disease

Treatments

Injections for Wet AMD

Telescopic implants

Are there new treatments in the pipeline?

Vitamins (see Self Maintenance/Self Care section below)

Research/Clinical trials

How can I become a part of a clinical trial?

Gene Therapy

Bionic Eye/Retinal Implants

Nutritional Supplements

Stem Cells

Coping with low vision

Low Vision Aids