macular degeneration, macular, diagnosis Self care – My Macular Degeneration Journey/Journal

Should I wear sunglasses? What kind are best?

Question: Should I wear sunglasses? What kind are best?

Answer: ABSOLUTELY you should wear them anytime you are outside even on cloudy days. They are not, however, all created equal.

Summary of what type of sunglasses are best

Choose frames that wrap around close to your face on the sides, bottom and top (either worn without glasses or as ‘fit overs’ worn over glasses). For flat or wraparound frames that don’t fit close to the face, an anti-reflective coating on the back side of the lens is recommended to reduce reflections into the eyes when bright light comes onto the face.

The lenses should filter out 100% of the UVA & UVB rays of the sun and be polarized. Just because they filter 100% of the sun’s rays does NOT mean they are polarized.

Polarized sunglasses can be worn indoors. However, if you want to look at a computer screen with them, you need to turn the device 90 degrees in either direction.

For normal conditions, the lenses should be a warm color such as amber, copper, or brown. They help reduce glare and improve contrast. These colors naturally filter out some blue light (also called HEV) of the sun which has been linked to AMD. The % of blue light/HEV blocked can vary by brand.

If you are often in foggy, overcast, dawn or dusk conditions, yellow lenses are helpful. Be careful when you read about ‘driving glasses’ with yellow lenses. They are too dark for night driving – clear is best – and too light for day driving.

For low light environments, a clear lens is the best.

If you are frequently in environments where there’s a lot of reflected light such as from snow or from water, a mirror finish is recommended. There are various colors of mirror finish, each with different characteristics.

If your environment changes regularly, you may want to have several pairs of sunglasses. One type of lens cannot handle them all.

We recommend that you purchase your sunglasses from a source where the specifications can easily be found to tell you how much blue light is being filtered. Also, they should be scratch resistant if possible. Some companies have great warranties. If you are not buying them where you can try them on, make sure that you can return them for free or at minimal cost.

Why and What

Why

Everyone should wear sunglasses. Get small children in them very, very early, and they will always use them.
Over 80% of lifetime sun exposure occurs before age 19. That doesn’t mean it’s too late to start wearing sunglasses!

People with AMD already have inflammatory damage to the retina and need to reduce the additional oxidative damage from sunlight by wearing proper sunglasses.

Eyes with light-colored irises also have lighter pigmentation in the retina and are more susceptible to light damage. That doesn’t mean that dark-colored irises filter out damaging light so that you don’t need to wear sunglasses. It means that it’s especially important for those with light-colored eyes.

People who have had cataracts removed let more light INTO the eye because the aging brunescent [means brown] lens has been replaced with a clear implant.

Do you wear contacts that have a UV blocking coating You still need to wear sunglasses because the only part of the eye protected is behind the lens. Also, they don’t filter out the blue light of the sun that has been linked to the development and progression of AMD.

Taking certain medications can make your eyes more susceptible to light damage.  In general, any medication that can make your skin more sensitive to light can make your eyes more sensitive to light. Also, some birth control & antibiotics can do that.

What

Lenses

They should filter out 100% of harmful UVA/UVA rays of the sun and as much blue light as possible:

You can, of course, get them from your optometrist where the options are presented to you & recommendations are made.

How do you know for sure if they do before you buy them: read the tags on them or the description online if that’s where you are buying them.

Coatings

Polarized Lenses

They have a laminated filter on them to block a portion of light from passing through to the eye. Polarized sunglasses were designed for settings in which light is intensified by reflecting off flat surfaces, increasing the amount of light and making it very difficult to see clearly. They are recommended for driving during the day.

Anti-reflective coating on the back of the lens

If your sunglasses don’t wrap around close to your face, try to get an anti-reflective coating on the back of the lens. It works to reflect any light that bounces off of the back of the lens and that goes into your eyes making it harder to see and causing more glare.

Night driving glasses

Although they are advertised more and more, they aren’t really a good idea. The article ‘Night driving glasses: Help or hoax?The article ‘ talks about a study where people wore yellow or clear lenses and were tested to see how they reacted to pedestrians. “Our data suggest that wearing yellow lens glasses when driving at night does not improve performance in the most critical task: detection of pedestrians,” the study authors said.


GO BACK TO FREQUENTLY ASKED QUESTIONS

What can I do for computer/digital eye strain?

QUESTION: What can I do for computer/digital eye strain?

ANSWER:
In a previous FAQ, I listed the symptoms of computer eye strain which are caused by staring at an electronic device for a long time. The symptoms are:

  • Sore, tired, burning or itching eyes
  • Watery or dry eyes
  • Blurred or double vision
  • Headache
  • Sore neck, shoulders or back
  • Increased sensitivity to light
  • Difficulty concentrating
  • Feeling that you cannot keep your eyes open
  • It’s not from the blue light (the research done on this is only being done on mice). Blue light has only been linked to causing an interruption in the sleep cycle (more about that in a comment below).
Will this cause permanent damage to my eyes in other ways?

From the Mayo Clinic article: ‘Eyestrain doesn’t have serious or long-term consequences, but it can be aggravating and unpleasant. It can make you tired and reduce your ability to concentrate.’
and
“Extended use of computers and other digital devices is one of the most common causes of eyestrain. The American Optometric Association calls this computer vision syndrome, or digital eyestrain. People who look at screens two or more hours in a row every day have the greatest risk of this condition.”

What can you do to alleviate the symptoms from computer/digital eye strain?

From the article ‘Computer eye strain: 10 steps for relief’:

  • make sure you have proper lighting. We know that those with AMD need more light than before;
  • minimize glare. Is there light coming in from outside that is reflecting on your screen? You can close the curtains to reduce that. You can get a non-glare cover from your screen;
  • how old is your computer monitor? LCD screens are easier on the eyes;
  • adjusting the display settings: is the text large enough? Is the screen bright enough?
  • blink more often! Every 20 minutes, blink 10 times by closing your eyes as if falling asleep (very slowly). This will help re-wet your eyes;
  • exercise your eyes: look away from your computer at least every 20 minutes and gaze at a distant object (at least 20 feet away) for at least 20 seconds. Some eye doctors call this the “20-20-20 rule.” Looking far away relaxes the focusing muscle inside the eye to reduce fatigue.
  • take frequent breaks;
  • is your workspace set up for ease of use?
  • Have you talked to your eye specialist about the coatings available for your eyeglasses?


GO BACK TO FREQUENTLY ASKED QUESTIONS

Rage Against the Dying of the Light

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

Dylan Thomas
1914 – 1953

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

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

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

This weekend we went.

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

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

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

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

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

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

Surround yourself with the people and things that you love.

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

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

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

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

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

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

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

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

Written November 24th, 2019

Next: Happy New Year 2020!

Don’t Panic!

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

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

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

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

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

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

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

Meaning? Don’t panic!

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

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

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

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

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

“And Now For Something Entirely Different”

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

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

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

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

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

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

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

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

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

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

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

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

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

Written February 11th, 2019

Next:

Next: FEELING GRATEFUL

If my vision changes, should I call my eye specialist?

QUESTION: If my vision changes, should I call my eye specialist?

ANSWER:
YES. Your doctor is the best judge of whether any changes are signs of worsening AMD. If it is a sign of wet AMD, the sooner the treatment begins, the better the prognosis.

It’s a common question. Here is a good answer: “What new symptoms should prompt a call to your eye doctor?

“Your doctor will ask you to check your vision at home to help detect any new onset of wet AMD. You should do this by covering one eye at a time (the “good” eye will compensate so you might not notice any change in the diseased eye) and looking at some reading material or a graph like an Amsler grid every few days. If you notice a change like blurry, wavy, or missing lines or letters, give your eye doctor a call. There may be additional concerning symptoms that your doctor will tell you about, depending on your situation.”

What’s an Amsler Grid?

It’s a page with horizontal and vertical lines (a grid) that you use to monitor your vision. The article ‘How to Use an Amsler Grid’ describes it with words and a video. There’s a link to print one or many for yourself. Some people print multiple ones so they mark what they see on any day and have it to compare.

Other Ways to Monitor Your Vision

The article ‘Monitoring the Progression of Dry Age-Related Macular Degeneration’ says, “The ForeseeHome Monitor® from Notal Vision® is the first FDA-cleared device for patients with dry AMD to monitor the disease at home. It is now a Medicare-covered service for patients enrolled in Medicare across the U.S., and who meet the eligibility criteria for dry AMD at high risk for converting to wet AMD. ”

 


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Be True to Yourself

As of today I have been out of my office for a week. My office is a toxic waste dump. Literally! Our best guess is someone spilled fuel oil that got into the groundwater and is now in our sump pump well. That is under MY floor, by the way. The lady from the lab has been in to take samples but until someone figures out what it is and what to do, my office reeks of hydrocarbons.

I am borrowing a very nice office. The borrowed office is spacious and neat. My office is small and crowded and full of stuff. I really miss my office. It is my space.

Monday was a great day. My husband drove me to the ski slopes and turned me loose. The sky was bright blue. The sun glistened off the white snow. There was a cold – but not frigid –  breeze blowing. I skied down medium difficulty slopes and I was in heaven. Do they have ski slopes in Heaven? I certainly hope so. The scene I just described is one of my special settings.

Me. Me. Me. My stuff. My places. As Sammy Davis, Jr. sang “I gotta be me”. The thing is, visual impairment developed later in life sometimes makes it hard to be me. Self determination – acting in accordance with one’s own core values – is seen by some as one of the basic psychological needs, but can be difficult when you have limitations.

So, is it really so important to be yourself? The “correct” term for being true to who you are is authenticity and there is evidence authenticity is pretty important. According to Karen Wright writing for Psychology Today (2008), daring to be yourself is correlated with many positives such as vitality, self-esteem and better coping skills. Inauthenticity can be experienced as feelings of emptiness or self- betrayal.

I was once asked what family and friends could best do to help a loved one with visual impairment. My spontaneous answer was people need to help us be who we are. Loss of identity is terrifying and frustrating. I want, I need, to live my values, engage in my activities and be surrounded by like-minded souls. Basic and essential requirements for a satisfying existence.

How to accomplish this? Fortunately I had a wide network of contacts before I became legally blind. My husband also learned a simple adage: happy wife, happy life. That is a corollary to “when mama’s not happy, nobody is happy.” He learned quickly it was easier to deliver me to an activity than listen to me mope around the house all day!

Other suggestions? Elizabeth Hopper writing for healthypsych.com suggested in The Study of Authenticity (February, 2018) that admitting your vulnerabilities is both being authentic and courageous. Most people will applaud your bravery. I have also found those same people are often willing to help.

Second, Hopper suggested mindfulness. Being truly present will allow you to react to a situation as you are and as it is, not as you think it should be.

Her last suggestion is to seek out situations that allow you to be self-aware. What contexts and situations allow you to be yourself? If you are a jeans and t-shirt sort of person you might be better at a blues festival than at the opera. How to get there? See point one.

“This above all: to thine own self be true, And it must follow, as the night the day,
Thou canst not then be false to any man.”- Polonium, Hamlet (Act 1, Scene 3)

Written January 29th, 2019

Next: HAPPY ANNIVERSARY TO US 2019

In the Moment

When it rains it pours. There really can be too much of a good thing.

Right now I am pretty much awash in interesting possibilities. My yogini and I are planning a six-week program applying yoga and mindfulness to mental health issues. At the office we are in the beginning stages of negotiating with a county agency to provide psychological evaluations. Lin and I are exploring options that have been presented to us to share our AMD knowledge and writing skills beyond what we do currently . My husband and I head to Ireland in April. Whoa.

In other words I think about the future a lot. I sort of live in the future.

So what are I doing now? I am lying on the bed with a dog stretched over my stomach. I am writing this page and thinking about taking a nap. I am cold and tired after a busy morning and it is time for a break. Time to be in the now and let the future take care of itself.

For many of us, being in the now – being in the moment in DBT speak – is extremely difficult. I know many of you live in the future in a rather negative fashion. We get a lot of “what if” comments. What if I go blind and can’t do x, y or z? What if they take my license? The world is full of what ifs that have not happened yet and may never happen. Yet we allow these thoughts to destroy perfectly acceptable nows because we worry and fret.

I have preached mindfulness here and at the office and have been told it is “impossible! I can’t do that!” dozens of times. I beg to differ.

In yoga – yes, again – there is a thing called a Drishti. A Drishti is a focus point you can use for balance. If I am doing a balance pose I have learned to find a stable spot in front of me and stare at it. With my vision I often use the little red light on the sound system speaker. THAT I can see!

Of course, balance challenged as I am, my Drishti often becomes a drifty, but that is neither here nor there. Having a point of focus helps maintain balance.

As it is on the mat, so it is off the mat. Having a point of focus in life helps to maintain balance as well. This can happen at many levels.
.
At the simplest level is something like focusing on petting the dog. Or the cat if you must. If you get a little drifty and start worrying and fretting, bring your attention back and try again. Focus on the soft, warm fur and just keep petting with attention, not automatically.

At a deeper level, think about everything you do, and do it with both intention and attention. Perform old tasks with the same focus you used when you were still learning. And be cognizant of your goals. What are you trying to do? Rinse the sink? Don’t just slosh some water around! Think of whether or not you are getting it clean. Focus. What is your purpose in this action?

So that is that…and yes, I know there is a difference between what I am planning for in the future and what you are worrying about. Planning versus worrying? By George, I believe I just set up a segue to my next page!

Catch you later!

Written January 19th, 2019

Next: Worry vs Planning

Sue on Assignment: Exhausted by Life?

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

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

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

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

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

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

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

Have fun!

Written December 1st, 2018

Go back to the list of “On Assignment” pages

Me and My Cocoons – A Personal Story, Not a Sales Pitch – Page 2k

Continued from page 1

How do you get a pair of lenses that will best protect your eyes and allow you to block out the glare that makes it hard for you to see but with frames that are something other than black? This is what the customer representative told me about 2 popular lenses for those with low vision. There ARE others that are similar such as copper.  If you have questions as to what will be best for you, contact Customer Service (informatin is below).

Comparison of Low Vision Lenses to Polarized Lenses

You will find both of these lenses and many more on this page.  Each lens has a link to the available types of frames that are available for it.

HAZELNUT Low Vision Lens

  • only available with black frames
  • often used indoors
  • non-polarized
  • 18% visible light transmission
  • UV400 rated for 100% protection from UVA & UVB rays
  • Filters 98% of blue light (HEV)

Amber Polarized lens

  •  14% visible light transmission
  • Polarized to eliminate blinding glare
  •  UV400 protection from UVA & UVB rays
  • Filters 90% of blue light (HEV)
  • Sharpens objects
For Help

The best way to get help is to call toll-free 800-834-2563.  Customer representatives are available on M-F from 6 am – 6 pm PST and I was told that any voicemails during other hours are promptly returned.

Return/Exchange Policy

They offer a 30-day money-back guarantee.  If you want a refund, just send back the glasses and they’ll refund you. If you ordered the wrong size or don’t like the lens, ship them back to the company in the original packaging and they’ll send a new pair.  I ordered the wrong size and did exactly this with no problem at all.  If you have any questions, contact their Customer Service.

Try Before You Buy

What if you’re not sure you’ll like the lens that you’ve chosen? Cocoons are not only sold online, but they are also available in many stores.

The Bottom Line

There are other brands and types of sunglasses available, both fitovers and ‘regular’ ones.  I can only talk about Cocoons because they’re the only ones that I’ve personally tried.  If you have a recommendation, please leave a comment on the page or email me at light2sight513@gmail.com.

Disclaimer

I’m sharing this information based on my personal experience.  Neither Sue nor I receive any money or products from the company.

Written November 2018

 

Me and My Cocoons – A Personal Story, Not a Sales Pitch Page 1

by Linda/Lin  ** See the disclaimer below.

I wrote this in November 2018, but haven’t had the time to check to see if the website is the same or if the products have changed. If you do find differences, I’d appreciate it if you let me know. Thanks! June 8th, 2020.

I bought my first pair of Cocoons fitovers in 2012 and loved them! They were stylish, fit well over my eyeglasses, and filtered out all the ‘bad stuff’ from sunlight. At the time, the danger from blue light outside wasn’t being discussed. As far as the fitover part, I think they would work well without the eyeglasses, too.

I’m hard on things like sunglasses, purses, shoes—accessories in general. My sand-color frames with amber lenses held up well until earlier this year when I noticed the coating wearing thin on the frames and one of the wires in a stem was poking out! It’s amazing they did so well considering I used them year round and especially in the extremely hot Atlanta summers.  I knew they had a lifetime warranty, but I was worried that I wouldn’t be able to get that fulfilled because I’d never registered them. I found the webpage about the lifetime warranty and found that all I had to do was to take photos of the damage, upload them and fill out a form.  For $9.95 shipping and handling, I got a brand-new pair of Cocoons with amethyst frames and grey mirror lenses. I LOVE them!  I feel confident that they’re protecting my eyes and filtering out all the ‘bad stuff’ including blue light from the sun.

Silly me had ordered the wrong size, and I had a question about a product for one of our Facebook group members, so I emailed their customer support. I got a prompt reply from a Customer Development Manager. She answered my question and helped me arrange a return of my new Cocoons.

They have quite an extensive product line, and I admitted to the customer representative that I was a little overwhelmed by their website. I was having a hard time finding the exact specifications for their frames and lenses.  She was patient with my seemingly endless questions.  With her help, I’ve come up with a guide to help you.

What all Cocoons Come With
  • A soft, durable neoprene Cocoons case and an Ultra Soft Lens Cloth
  • A 30-day money-back guarantee
  • A warranty covering all defects in material and workmanship to the original purchaser for life!
  • All lenses block 100% of UV radiation, but different lens tints filter types of light differently.
  • Dealers or online purchases available worldwide!
  • All lenses are scratch resistant
  • The frames block light from the top, sides, and bottom: 360-degree UV protection
  • The frames can be manually adjusted to fit the shape and curvature of your head
How to Find the Right Lenses: Two Ways

There are 3 product lines that I’m focusing on because these are the ones I can speak about personally: Low Vision Fitovers, Fashion Fitovers, and Vistana Fitovers.  You can see all their products on their Shop page.

  • Low Vision Fitovers
    • Not polarized but filter UV & blue light (amount varies with lens)
    • Frames only available in black
    • Lenses increase contrast, reduce glare
  • Fashion Fitovers
    • A wide variety of frames with a gloss finish (7 colors)  and 4 lenses to choose from
  • Vistana Fitovers
    • They offer the same 360-degree protection
    • Lenses designed as one piece from front to side for a sleeker lens design
Find the Lens First

I think you need to spend time on the website which is packed with information and options.  When I chose my new pair, I wanted a lens that not only filtered out the UV rays (they all do), I also wanted blue light filtering (they all have some). I admit that I wanted something other than a black frame. What can I say? ::grin:: I started on this page to check out the details of the Cocoon lenses.  This page explains what polarization is and what it does, gives examples of what some of the lenses do to images in different seasons and then gives the details for each of their lenses regarding blue light blockage and light transmission. There is a link or links that take you to a shopping page where you see all the frames available for that lens.

Big Question: Low Vision Fitovers

Many of you have low vision due to macular degeneration which causes you to be sensitive to glare, and you have problems with contrast. When you go to the Low Vision Shop page, you’ll find that the only frames available are black ones.  It doesn’t state on the page, but I found elsewhere that these lenses are not polarized.  So what do you do if you want a polarized lens and a fashionable frame? I asked the customer representative about this, and she said that …

Continued on the next page–>Comparison of Low Vision Lenses to Polarized Lenses & a Discount Code to Help You Get YOUR Cocoons

Disclaimer

I’m sharing this information based on my personal experience.  Neither Sue nor I receive any money or products from the company.

Written November 2018

What Can I Do to Slow the Progression of AMD?

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

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

These are NOT in any order except for number 1.

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

1. Don’t smoke. #4 and many others.

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

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

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

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

6. Moderate aerobic exercise. #1 and others

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

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

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

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

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

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

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

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

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

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

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

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


References

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

From the Top of the Pile

Greetings. Another day gone, but I am not sure where. After doing some work-work and yoga and a puppy walk and other assorted nonsense, I decided some of the piles in my home “office” – and believe me, I use the term loosely – had reached critical mass. What do I have in this mess, exactly?

Well, it appears generic drugs for wet AMD are coming our way. Or maybe they are “look alike,” drugs but that term has a bad connotation. The article says “biosimilar” so maybe we can go with that.

Whatever term you use, the Indians are coming up with some medications that pretty much do the same job as some anti-VEGF drugs being manufactured here and in Europe. The one the Medscape article highlights is called Razumab and it is a stand-in for ranibizumab.

The article goes on to explain biosimilar drugs are designed to replicate the molecular structure of existing biologics. Like generics, they cost much less…hmmmm. I don’t think I have to guess what big pharma thinks about that!

As might be anticipated, these biosimilars are not yet available in the States. The FDA has not yet approved any biosimilar for ophthalmic use but that does not mean it won’t happen. The Wiki people have a current list of 11 biosimilars already approved.

As of the date of the article, they were having a few problems with manufacturing consistency from batch to batch. In other words, not yet ready for primetime. However, stay tuned.

We did a cursory look at the Retina Specialist Pipeline Update several pages ago. Looking at all of the potential new treatment for wet AMD, I kept seeing the term “novel antibody.” I just did a search and did not get far on that term. My best guess is they are manufacturing new antibodies for specific purposes.

Anyone want to explain “novel antibody” in one and two syllable words, I would like to hear from you.

And here is an article of everyday practicality from WebRN. The title of the article is Macular Degeneration Aids for Grooming. The article suggests a lighted make-up mirror for both sexes and electric rather than blade razors. The better to not cut your own throat, my dears. Shampoo should be in pump bottles so you are not fumbling with the cap and/or spilling slippery shampoo in the shower or on the bathroom floor. You can also get body lotion in pump bottles. Same concept.

Although the WebRN article does not say so, a system to distinguish your shampoo from your lotion is also a good idea. For example, some people put one rubber band around one container and two around the other. Or, pick products with distinctive scents. Strawberry shampoo and lemon lotion, for example. Yes, there is a risk of ending up smelling like a fruit salad but that is better than “washing” your hair with body lotion!

So, my one pile is a little smaller now. There is so much good stuff out there! We’ll just keep looking at it for you. And if you have any topics you want to be covered, let us know. Otherwise, you might just keep getting what floats to the top of the pile!

Written August 19, 2018

Next: Life is Not Fair

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Coping: A Review

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

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

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

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

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

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

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

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

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

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

Written August 16th, 2018

Next: I Know Who I Am

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Same Stuff Different Day

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

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

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

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

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

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

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

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

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

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

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

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

Written August 4, 2018

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

Next: Where’s Your Hope?

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Mailbox or Child?

I spent most of yesterday afternoon trying to be assertive, not aggressive. Fighting the good fight for my rights. Do you ever just get sick and tired of holding people accountable? Why can’t people do things right? Or at least do what they say they will do?

My CCTV that was in the shop for the second time in a month was supposed to have a 24-hour turnaround time. They received it Monday and sent it Friday…after I called and complained.

Then there was some sort of snafu, and I did not get picked up to come home after exercise class Thursday. There is no after hours, emergency number for the transit company. Our home phone was out-of-order, and for a while, I was up the creek without a paddle.

I was on the phone with the county commissioner Friday. Since I am seen by the transit company as not having any power, I borrowed some power from the county. Should get the job done.

All of which is almost enough hassle to make me just “forget” I am visibly impaired and go back to normal life. Like driving myself for example.

It is ALMOST enough. Why? Because if I were to injure or kill anyone when driving, a lot more people than me would be inconvenienced.

Lin said several of the Facebook group members are driving. She urged people to take a good look at their vision – and I would say also a good look at their consciences – and decide whether they should actually be driving. Lin suggested a little “self-test “ she thought up. [Lin/Linda: details on that below.]

I have a few additions to that. These are some questions I thought of when on the “short bus” and then later walking the puppygirls.

Do you actually know what you are looking at? Because I don’t! Many times I can see there is something there, but I have no clue what it is. Suppose it is a mailbox, but I think it is a child standing on the curb. Do I stop and try to let the mailbox cross? (New old joke: why did the mailbox cross the road? Uh….sorry.) How about the other way around? What if that “mailbox” suddenly darts in front of me? Am I prepared? Probably not. I was thinking “mailbox” not “child.”

Can you see things that are not moving? Several times I have not seen flagmen. They were just standing there in my blind spot. Movement catches my eye, but stillness does not.

This week the creek and the river decided to get “up close and personal” in several neighborhoods. (Just missed a serious flood, and thanks for asking). There are signs all over the place. I have to be right on top of them to read them. It takes me a few seconds to actually decipher what it says. And that is walking! If I were driving the speed limit, I could either come to a dead stop and actually read the sign…or drive into the river.

The moral of that last question was this: the familiar changes. Anticipating what was does not always prepare us for what is.

And those are my questions for those who are driving visually impaired. Me? I will continue to fight the good fight with the (fill in the blank) transit company. Being on the side of the angels is preferable to becoming one.

Written July 27th, 2018

Lin/Linda:  my self-test:

  •  While parked, focus on something in front of you. Close one eye. Is everything still there in your visual field? Close the other eye. All OK?
  • While parked, turn to the left & focus on something in your visual field. Close one eye. All OK? Close the other eye. All OK?
  • While parked, turn to the right & focus on something in your visual field. Close one eye. All OK? Close the other eye. All OK?
  • Can you see the controls on your dash? With lessened contract sensitivity, many of you cannot.
  • Also, can you tell when a traffic light changes colors? My Dad who had geographic atrophy could not. He took my mother with him so she could tell him. However, she developed Alzheimer’s and eventually could not do that. He continued to drive. I was 700 miles away or I would have stopped it. He said,”I only drive locally.” Locally was on roads where there were narrow roads with people walking and on bikes. I KNOW he could not see many of them.
  • Can you see the lines on the road?

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A Pretty Good Monday

Monday, Monday… Let’s hope it will be all we hoped it would be. (The Mamas and the Papas 1966) . We are going to run errands and going to add a stop at a low vision store in a city not too far away.

I had no idea it even existed until a friend of a friend put me on to it. Network. Network. Network.

Monday afternoon

So far, except for the rain that has me California Dreamin’ (The Mamas and the Papas also 1966), this has been a decent day. We ate at a “nationally-known seafood restaurant” and then went to the low vision place.

The store is pretty small, and they admitted there is a lot more in the MaxiAids catalog. (MaxiAids is a great resource!) What was cool, though, was I got to use the IrisVision goggles for a quick demo.

The IrisVision system combines a Samsung in a virtual reality (VR) headset with a Samsung Galaxy phone to provide magnification at several different distances.

The IrisVision system has a “bubble” that you can use to zoom in on things in the larger view. I had some problems with that because the clock face looked as if it had been imprinted on a beach ball. I liked what the woman I was talking to called the “TV view” much better. The goggles can be focused so you don’t have to deal with your myopia (or whatever) when using them. There is a nice, wide field of view.

Overall, in a very short presentation, I was impressed with the quality of the image and the magnification capacities of the system. I was not thrilled with the weight of the goggles, the battery life (about three hours) or the price.

Not sure they can do anything about the weight right now. They are reported to be working on the battery life and the price. The woman I spoke with said the price for the whole system is $2500. Both she and the website indicated the IrisVision system can be purchased on credit for $100 per month. That is about two years. I heard a rumor they are not charging interest, but I do not have that substantiated. [Lin/Linda: Actually, their website says that payment plans “start at” $81 per month and they DO charge interest: “$80.86/mo. based on a purchase price of $2,500.00 at 10% APR for 36 months. Rates from 10–30% APR.” I personally believe that the prices of this type of visual aid will be coming down now that there’s more demand and more competition. There are more of these headworn devices being developed and they have more features. I personally wouldn’t buy one – yet. ]

The place I went has purchased three or four of them and have loaned them out to clients. There was some sort of grant involved.

Anyway, I gave the woman our card and asked her to see if any of the clients using the IrisVision system would like to write a page. Maybe we will get feedback from someone who has used the thing for more than five minutes….and remember, should any of you want to be a guest author, we would love to hear from you. [Lin/Linda: If you want to check out the current competition, I’ve written some pages–click here.]

And one last thing before I go, being the dog lover I am, I wanted to do a shout-out to Imus, who apparently came from a litter all named after radio personalities, deejays, and shock jocks.

Imus was the reception’s guide dog and, since he was out of harness, I got to love him up. Sweet, sweet dog….and thank you to Guide Dogs of America for making him available to his owner and by extension me.

All in all, glad I “trusted” that day. It was a pretty good Monday, Monday.

Written July 25th, 2018

Next: Gold in Them There Eyeballs

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Zen Habits

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

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

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

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

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

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

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

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

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

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

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

Next: Dual Diagnosis

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Stories to Tell

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

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

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

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

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

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

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

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

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

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

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

Written June 23rd, 2018

Next: Keeping Our Eyes Open

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Focus

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

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

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

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

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

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

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

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

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

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

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

Written June 22nd, 2018

Next: Stories to Tell

HOme

I Got This

I don’t want to say this too loudly – one should never tempt the Fates. You know they have a perverse sense of humor – but things are getting accomplished around here. I just nibble, nibble nibble. “Whoops! There goes another rubber tree!” (High Hopes starring Bing Crosby, 1959). Nibble nibble seems to eventually get the job done.

Because I absolutely ALWAYS overextend myself (a high school speech took off from Robert Browning’s “…a man’s reach should exceed his grasp or what is a heaven for?”), I have always nibble nibbled at a half dozen things at any one time. There is very little that did not get done by the deadline.

Bringing me to the topic for today: getting through when there are changes in life and things get a little overwhelming. Trust me. I don’t want to leave my school job and I REALLY don’t want to deal with all of the happy horse manure changes that come to life with vision loss. But when I look back, the last 64 years have been navigated pretty well. I have a track record of successes. I have done it before. Hey, I got this one, too.

I had a client today who graduated college in May of last year. Doing the ‘adult thing’ and it’s stressful for him. My client is very nostalgic for his college days.

From our perspective it seems a little silly to be nostalgic at the ripe old age of 22, but actually nostalgia is a good coping skill at any age. Personal nostalgia, according to Kristine Batcho in the June, 2017 theconversation.com, can be a stabilizing force. It reminds us we have a great storehouse of personal memories. These memories of the good times and positive relationships can be comforting in stressful times. Batcho reports she has found people who are able to be more nostalgic – remembering the good times – can use the power of those memories to cope with adversity. Remembering the positive relationships in your life may make you more apt to reach out for emotional support, advice and practical help.

In short, I have been cared for. I have been successful. This is just one more hurdle like every other hurdle I have surmounted. I got this.

Since recalling good memories is good for you, you would think I could find a ‘how to’ list on how to bring up these memories. I did not and I really did look and look and look. One thing the sources agreed on was bad memories fade and good ones endure so that should make it easier. One Wikipedia article said some researchers stimulate recall by using lists of cue words. You can make a list of words like fun, happy, success, sunshine and see what comes up. Another Wikipedia article said when it comes to recall, faces have an advantage so take out that yearbook and take a look. Then there are smells. They are closely linked to emotions and memory. What does that baking bread remind you of? The French fries cooking at the street fair? The cologne that woman is wearing? Cue up some positive memories for yourself.

Just one more little trick to try to make things go a little easier. Hope it helped. And remember, “I got this”.

Next: Plump Up That Pigment

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The Power of Expectations

I like people. I really do, but every once in a while they drive me insane. (Then I drive other people insane complaining, but that is a different page!)

The most recent thing is this retirement nonsense. When people hear I have decided to leave my school job, they conjure up their own retirement fantasies. Then they project them on me!

Now I know projections are more about the project-er than the project-ee  but their expectations of what I would do in retirement gripe my cute, little ol’ lady tushie. Do they really know that little about me?!?!

Then I started thinking about expectations. Everyone has expectations of everyone else. Some of these people ask if I am going to do ‘fun’ hobbies, like gardening. (The last time I played in the dirt was the Dirty Girls charity mud run about 8 years ago!) Others expect me to sit in my favorite chair and watch daytime TV. None of the stuff they expect I will do is ‘me’.

The problem with expectations is this: they have an effect on the person at whom they are aimed!  It has been proven scientifically a couple of dozen times. Many years ago Robert Rosenthal randomly picked elementary school children and told their teachers they were the children a test had predicted would flourish that school year. One guess who just blossomed that year.  That was the power of expectations from others.

Then there is the power of our own expectations. Ever hear of the placebo effect? Yep, that is the power of our own expectations at work.

Now so far I have mentioned positive effects of expectations. Expectations also work the other way. In the winter 2018 Education Next they concluded racial bias negatively effects student outcomes.

Now what about expectations of the visually impaired? I suspect every one of you has dealt with the expectations of others. Some people – probably few and far between the truth be known – expect you to function as well as always. Others put severe limits on you. How could she possibly do anything? She is visually impaired!

Last year Kristen Smedley wrote for The Mighty about having to revise her expectations for her two, blind sons. She went from having dismal expectations to realizing the only way her sons were going to achieve anything at all was for her to believe in them and expect the best they could give. It payed off.

So, what is my purpose here? Well, other than to rant about how people expect some pretty strange things from me in the years after my retirement from school, I imagine my purpose is to warn you about the power of expectations. Don’t sell yourself short. Don’t let other people sell you short.  Low expectations lead to low achievement of goals. And in our class, low achievement of goals means a lack of independence.

Believe in yourself. Get others to believe in you. Harness the power of expectations.

Next: coming soon!

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Do As I Say – Again

Do as I say. Do not do as I do.

In the interest of full disclosure I must make a confession. Moments before starting this page I ate a BLT with mayo. It was yummy. [Lin/Linda: don’t know what a BLT is?  It’s a Bacon Lettuce and Tomato sandwich, mayo is mayonnaise.]

Now, with that off my conscience, I guess I can move on…wait, do I need to tell you about the potato chips, too? Sigh. OK. I also had potato chips.

Now…before dessert, I want to go into the topic of prostaglandins. I imagine I have heard about them before, but at the seminar I was at last Friday the presenter referred to them several times. At this seminar on chronic pain the presenter mentioned how inflammation is a big part of chronic pain. He went a bit into how prostaglandins are a precursor to inflammation.

First point: what are prostaglandins ? According to You and Your Hormones – can you imagine naming a website You and Your Hormones? Go figure – prostaglandins are a group of lipids – read fats – made at the sites of tissue damage or infection. They control inflammation, blood flow, the formation of blood clots and labor.

Prostaglandins are being investigated for their role in autoimmune disorders. There is excellent evidence there is some role there because, for one thing, substances such as NSAID pain relievers are known to reduce prostaglandins levels. If they work on your arthritis, there should be some connection; yes? Yes.

According to another source, Omega-3 Fatty Acids in Inflammation and Autoimmune Disease authored by Artemis Simopoulos, omega-6 fatty acids are kinda bad for inflammation. Meats and vegetable oils – read BLTs with mayo – provide really wonderful building blocks for prostaglandins and therefore inflammation. Oh, fudge! (I really like that, too!) In other words, my usual diet is fertile ground for the development of prostaglandins and, by extension, inflammation.

So why do I mention this in a blog on Age-Related Macular Degeneration (as well as everything else that intrigues my devious, little mind)? There is what seems to be building evidence for the case that AMD is an autoimmune disorder. There is evidence AMD is caused by problems with the complement immune system. Those who have been following for some time recall the complement immune system is the one that deals with non specific threats. It fights disease with fever and inflammation Hmmmm, this is all starting to come together here.

As I write, it is becoming apparent my diet may not be the best for my eyes. What the literature suggests we should be eating includes omega-3 fatty acids such as those found in fish. Omega-3 fatty acids are also found in dark green vegetables. WikiHow suggests things such as mangoes, pomegranates and tomatoes. Tomatoes, yes! Finally, something I really love !

Anyhow, just thought I would mention this all actually makes a bit of sense. The foods we are told to eat for our eyes have been discovered to reduce prostaglandins. Prostaglandins fuel inflammation. Inflammation happens in autoimmune disease. AMD, it has been theorized, could very likely be an autoimmune disease. Voila! Neat little package.

Of course, for us whose diet consists mainly of carbs, fat and salt, this is sorrowful news. I imagine I should mend my ways. Tomorrow. Everyone should have at least one vice; right? ? After all, I did say do as I say!

Written March 28th, 2018


Next: Bedlam

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Early AMD in one eye/no AMD the other eye

Early AMD in one eye/no AMD the other eye

There were not enough participants in AREDS to a generate a recommendation. Perhaps results of Awh, Zanke and Kustra (2017) below may apply but it has not yet been studied. The study found that those with a specific genetic makeup may be harmed by taking the antioxidants (no zinc). There were no participants with early AMD in AREDS2.  If your doctor has recommended that you take the supplement, see “Early AMD in both eyes” in The Guide.


References

Go back to The Guide

Keep an Open Mind

Hi! Looking for information on coping with vision loss I found an article that covered something called the Coping with Vision Loss Study. It was covered on the VisionAware.org site.

The study was a small one (n=163) but it had a noble goal: to document the process of coping with vision loss. The information came from people who had gone through the process of vision loss. 45% had macular degeneration.

The study determined the most prevalent emotional reaction to the diagnosis of a condition that would cause vision loss was anxiety. Personally I do not need to ever have panic attacks like the ones I had ever again!

Even though anxiety was a major concern for the greatest number of people, it does not mean other, emotional problems were not present. A fair number of respondents were found to be dealing with moderate to severe depression.

Of course, since the study was about actually coping with vision loss, the emphasis was on factors and strategies for getting by and avoiding these adverse, emotional reactions. The study reported respondents had a variety of suggestions for doing this. These suggestions included seeking out the most competent specialists available as well as getting a second or even a third opinion, following doctors’ directions and connecting with others who have personal experience with vision loss.

These suggestions from the study respondents centered on personal responsibility and becoming your own, best advocate (as opposed to your own, worst enemy!) Be proactive about your life and your condition. Become knowledgeable about the condition. Get your questions answered. Monitor your own vision loss and seek out training so you can learn new skills to increase your independence.

Building support networks was another idea endorsed by the respondents. The respondents specifically mentioned family, friends, specialists and helpful community resources.

Community agencies were also listed as very important. Many agencies for the visually impaired can be helpful in finding support and educational resources as well as help you find the appropriate assistive technology.

Technology does not seem as appealing to the older generations as it does to younger folks. Yet respondents encouraged those who are new diagnosed to embrace the technology that is available. Competent use of iPads and magnifiers can significant improvement the quality of life for the visually impaired.

The article mentions a great many things we have talked about. It reviews the importance of proper lighting and contrast, for example. Finding someone who can help you with these sorts of things is important.

The list of recommendations from the study authors veers off into some things that are more personal and possibly even more essential for adjustment. The list includes things like being patient and gentle with yourself. Adaptation is not an overnight process, often grieving the loss is necessary before moving on. Take time to do so, but try not to get stuck in your grief.

I paint my pigheadedness as positive and call it persistence or fortitude. However, stubbornness can also be a bad thing when it keeps you from experimenting with technology or other strategies for living. The study suggested keeping an open mind and doing what is effective.

Which brings us to the last one I want to mention: there is more than one way to skin a cat (I reiterate: where did that saying come from? Did our ancestors spend that much time hanging out and trying various ways to skin cats? Yuck.) Find new ways to get things done. The idea the only right way of doing things is how I was taught at my father’s knee does no longer apply. Learn to be flexible and do what works.

There are other things that were discovered by the study, but those are the highlights as I saw them. Hope it was helpful!

Written Feb. 4th, 2018

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