macular degeneration, macular, diagnosis sunglasses – 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

Sue on Assignment: Altitude and AMD – Part 2

Hi, again! Back being a Mr. Wizard wannabe with little-known facts about AMD, your eyes, light and all sorts of weird stuff. This is kinda fun! I started looking for the stuff about altitude and AMD and stumbled upon more cool facts about UV light. Thanks to the National Weather Service, Flagstaff.

Ultraviolet – or “beyond violet” because the wavelength is even shorter than violet light, the shortest wavelength light we can actually see with our eyes – is generally reflected or absorbed by the ozone layer. However, there is plenty of UV light that gets through. This UV light can get through to us either directly or in a diffuse manner. Because ultraviolet, violet and their other, short buddy, blue, are so small, they get pushed around more than the other lights. The sky is blue because all the short-stuff rays are being pushed around up there. Violet and ultraviolet are there, too, of course.

Being small and doing all that bouncing around mean ultraviolet is more stealthy. It slips through in “sky shine”. It also slips through on overcast days. That means we need to be even more careful and wear our sunglasses when it is overcast.

And speaking of sunglasses, I discovered why they say sunglasses are good for ultraviolet and then a letter. Ultraviolet has parts A, B and C. UVC is the bad stuff. It is a danger to both plants and animal. 99% of ultraviolet UVB is absorbed by the ozone layer. The 1% that reaches the ground can potentially cause damage at the molecular level. UVA fades things and makes things brittle.

So that is the science lesson on UV light. Now it is time to move on to the effects of altitude. Or, more precisely, high altitude hypobaric hypoxia. Huh? You know, low air pressure, low oxygen conditions like you get on, oh, for example, Everest or K2.

Back in 2005 a group of researchers working in Nepal published a study in Ophthalmologica on macular changes at high altitudes. They only studied three people, all of them experienced climbers. All three showed macular changes for the worse. The authors concluded AMD folks should avoid high altitudes without proper acclimation.

In 2012 Grimm and Willman published a study again on hypoxia and retinopathy. They determined low oxygen can lead to the expression of vascular endothelial growth factor.

When you think about it, it makes sense. The eye is actually an energy hog. Energy production requires oxygen. If your eye is low on oxygen, it may try to get more by building more “supply lines”. That is what blood vessels are; yes, no? Our bodies are actually pretty smart.

From the little research I did, it would appear there are some reasons for concern when traveling in high altitude locales. However, provided you are not attempting an ascent of Everest, the effects are not so bad they cannot be mitigated.

It would appear good quality sunglasses are a must in such environments. It would appear from the research that proper acclimation to the altitude is also a must. Give your body time to become more efficient in getting oxygen where it needs to go.

As I have said numerous times, I am not a doctor. These are just educated guesses and precautions that I, as a fairly intelligent person, would take. Remember to check with your doctor for all medical advice. Your retinologist should be your guide.

(And if you are in Nepal, greetings! My puppygirls just realized you had Kukur Tihar, the day of the dog celebration, November 6. They think any people who have a day set aside to honor dogs are just great!) [Since Sue & I are both ‘dog people’ she thought it’d be cool to show a photo of a dog on that day. At my house, every day is The Day of the Dogs! ::smile::]

Written November 17th, 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

Life After Vision Loss

I have been ignoring you. This is my first page in eight days.

I have not been ignoring you on purpose. I have been having what I consider to be a raging case of seasonal allergies (my husband swears I caught a germ) and fighting that. I have also been doing other things such as going to exercise, a benefit supper and work. September we go back to the second half of our “free” training, and I need to have my homework done.

I say this not to garner sympathy or admiration but to make this point: there is life after vision loss. Vision loss does sometimes shrink into the background. Sometimes wondering if you will ever get through a day without hacking up a lung or pondering where the hey the answer to question six is in the handouts really does take precedence.

And with that reassurance – there really is life after vision loss! – I want to move on.

Lin sends me stuff. I know the Facebook group has talked about the topic of blue light to death, but let’s quickly do a review of the article she sent me.

The article is Can Phones Make You Go Blind? In my short time on Earth we have gone from heavy, Bakelite monstrosities with little operators who hated kids living inside of them (I swear. I had a bad experience when I was about three. The little operator in the phone yelled at me to stop playing with the phone and behave myself. It was traumatizing!) to little, pocket-sized things (on which kids play all day. Go figure.) These little, pocket-sized things emit blue light that destroys retinas. The only way the old, black phones of my early childhood could have blinded you was if someone hit you over the head with one. I guess this is progress.

Anyway, it seems blue light will cause the chemical retinal (that is “retin- all” for pronunciation) to morph into something toxic. It all has to do with oxygenation and reactive oxygen species (ROS). ROSs sort of run amok damaging other cells. Ever heard the term free radical? It is all related.

Bottom line is, we need oxygen to be used in the chemical processes of life. Cannot cut that out of the equation. Also, in this technology-crazy world, screens that emit blue light pretty much rule. I will give up my device when you pry it out of my cold, dead hand. Besides, technology makes vision loss tolerable for many of us.

The answer appears to be putting “shades” on all of your devices. Blue light filters come in a variety of sizes. Most of them just mold to your screens. No muss and no fuss.

Amazon has a selection of blue light filters available. A lot of them cost in excess of $40. Potentially a little expensive.

There is another option, however. Amber lenses can do pretty much the same thing. Sunglasses with amber lenses block blue light and can be worn while you look at any screen. One purchase rather than several. Another benefit of wearing amber lenses and blocking blue light is, according to the research, better sleep.

Get shades for your screens or you wear shades yourself. Either way, it is best to avoid that pretty, blue light.


Lin/Linda: As with so many topics in the field, since I gave Sue the article she’s written about, this article was released: No, Blue Light From Your Smartphone Is Not Blinding You. This article is from the American Academy of Ophthalmology (AAO), and it says, “Blue light from electronic screens is not making you blind. A recently released study has been creating both concern in the public and alarmist headlines from news outlets worldwide. But experts are cautioning that the news reports are leaping to unfounded conclusions about the potential effects of blue light on the eye.”

Written August 28th, 2018

Next: coming soon!

Home

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

Rock On!

Over the past year I have developed a certain affection for Cheeseheads. Wisconsin seems to do a lot for people with visual impairment. However, I am starting to think the Beaver Dam researchers may be a bunch of killjoys!

Wisconsin? Beaver Dam? Yep. Beaver Dam is a town with between 16,000 and 17,000 people located along the Beaver Dam River and, yep, Beaver Dam Lake. I guess they ran out of catchy names. (Actually, that really DID happen in upstate New York. I got a giggle out of the fact they gave up and just started numbering lakes!)

But back to Wisconsin. The Beaver Dam study started in 1987. Since then they have regularly polled and tested the folks about all things vision. A big area of interest for them has been macular degeneration.

Lin sent me a 2004 article on how the Beaver Dam people found a correlation between sunburns in youth and macular degeneration. Problem was she sent it Friday evening. The evening before I was going to “Brigg’s”, an outdoor blues/music festival. Really???? Why now? [Lin/Linda: in all fairness, I did not know about Brigg’s until AFTER I sent Sue the article!]

To make a long story sort of short, I put on my ‘dancing shoes’, slathered on the sunscreen and went. The article said sunburn in your youth. Sixties are not youth; right? Had a great time.

I decided old rockers never die; they just go to music fests. I saw more gray ponytails – male and female – than I had ever seen in one place before in my life. Rock on!

Came home and I am looking into this sunburn and AMD stuff. After all, outside is one of my favorite places!

The article Lin sent me says people with 5 or more hours of sun exposure are more likely to have increased retinal pigment. Hats and sunglasses are associated with fewer soft drusen and RPE degeneration. 10 or more ‘severe’ sunburns in youth is more than twice as likely to be correlated with AMD later in life than two or fewer sunburns.

Something that was a relief to me was there was no correlation between time spent outdoors in winter sports and AMD. Apparently my day skiing right before I ‘lost’ my second eye had nothing to do with things. (Phew!)

The report kicks around several reasons for the sunburn/AMD correlation and finally decides more study is needed. Me, too. Khan, Shahid and Yates found a ‘suggestion’ of an association between sunburn prone skin and geographic atrophy. In 1998 the Blue Mountain Eye Study (hi, there, New South Wales!) found blue eyes can lead to AMD trouble. Sounds like the jury may still be out on sunburnt SKIN and AMD.

However, the jury has come in on sunburned eyes. The Southwest Eye Center reports photokeratitis, sunburn of the eye, can result in pterygium (a condition of the conjunctiva/cornea), cataracts and possibly cancer. AMD is listed on the page as a ‘maybe’.

Bottom line is this: wear sunglasses. Wear sunscreen. And, rock on! ?

written July 9th, 2017

Continue reading “Rock On!”

Dear Amazon: A Love Letter

This is a love letter to Amazon. I don’t usually develop crushes on mail order houses. Yes, there was a time I was infatuated with the Sears Christmas catalog. However I was very young and it was probably puppy love.

I previously mentioned that Amazon has free e-books (it also has thousands of titles that you can pay for).  You can download an e-book to your tablet and make it just about as large as you wish. This little feature has made it possible for me to read. That’s exciting to me.

Amazon’s eBook reader allows you to enlarge the text as large as you want which has made it possible for me to read.  That’s exciting to me!

Amazon also has an amazing collection of stuff. You can get pictures and descriptions of this stuff on your tablet. Once it’s on your tablet you can again make it as big as you like. You can actually see what you are interested in buying.

Amazon’s amazing collection of stuff includes all sorts of nifty things for people with visual impairment. Sort of one-stop shopping for those of us who don’t see so well anymore and may depend upon others to get around.

Click here to see products that match ‘visually impaired’.

So far I have purchased fashionable sunglasses that don’t ‘leak’ light along the edges and a halogen floor lamp with a magnifying lens and a clip attached to the pole. Since I am name-dropping in this post, I will tell you my lamp is named Ott. Ott works great but occasionally gets a little tipsy. I have his – er, its – base shoved under the night stand. Solves the problem.

I am waiting for neon-colored paper with dark, black lines. Amazon has dozens of types of pens. I have been told there is a black pen that doesn’t bleed through the paper. Hoping to find out the name of those pens soon. Maybe I can order them from Amazon.

Amazon has neon-colored paper with dark, black lines and pens that don’t bleed through the paper.

If you want a little something to share with friends, Amazon even has a 50 pack of magnetic Amsler Grids. You know what I am talking about. Your eye doctor probably gave you one as a consolation prize when he diagnosed you with your first drusen. Maybe he got his Amsler Grids from Amazon!

Made a discovery when I was researching the Amazon site. There is actually a music (rock?) group called The Amsler Grid. Strange. Maybe somebody in the family is an ophthalmologist. Anyway, you can buy their music on Amazon, too.

There really is some amazing stuff out there. If you want something enlarged or to talk to you, they have it. Some of the stuff is bilingual. Habla Espanol? The thermometer does.

From Old Maid cards to multicolored rock salt, it seems to be available in the visually impaired section at Amazon. Amazing.

Amazon has everything from magnetic Amsler Grids to bilingual products to Old Maid cards…and more!

Written March 2016. Reviewed September 2018.

Continue reading “Dear Amazon: A Love Letter”

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

  • 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.


Glossary

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Websites devoted to AMD and Other Forms of Macular Degeneration

listed in no particular order

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Websites containing information about AMD and Other Forms of Macular Degeneration

listed in no particular order

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Support

I’ve not been able to verify if these are kept up to date. Let me know if you find that they are not or if you have one  you’d like to add.

Message Boards including ones from
By postal mail

I don’t know if these are still accurate.

  • Association for Macular Diseases
    210 E. 64th Street
    New York, NY 10021
    (212) 605-3719
    – Offers education and information on macular disease through seminars, newsletters, and a hotline. Offers counseling to patients and their families.
  • Macular Degeneration International
    is now a part of Foundation Fighting Blindness
    Toll Free Helpline 1-800-683-5555
    EMail: MDInfo@blindness.org
    – Provides support for people affected by inherited macular degeneration including Stargardt’s disease.
Start Your Own
  • Vision Support Group-download video presentations  This group provides free information and support through presentations to groups of senior adults affected by macular degeneration and related retinal diseases.  You can join & get access to their materials so you can use them in your own group.
On the phone/telesupport

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Where to find services

  • In the US: click here to find a low vision center, retina specialist, state agency, ophthalmologist
  • In the UK: click here to support services (listed on the right side of the page) such as skills for seeing, counseling, access to treatment…and more
  • In the US: click here to search for a wide variety of services (more than the link above)
  • In Australia: click here to find an ophthalmologist and optometrist
  • Worldwide: click here for resources worldwide

Resources for Students

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Books and reading materials

Specific Titles

Sources of Books

Formats: Braille, large print, e-book and audiobooks

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Videos

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Personal stories of living with AMD

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Online newsletters

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What is AMD?

Wet Form
Dry Form
How fast does AMD progress?
  • A good article about how difficult this is to answer
  • Great video that explains why early detection is important especially when detecting the change from dry AMD to wet

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What is Stargardt’s Disease?

Also called Stargardt’s Disease (SD) or Stargardt Macular Dystrophy (SMD) or Juvenile Macular Degeneration (JMD), it’s an inherited, juvenile macular degeneration. The progressive vision loss associated with Stargardt disease is caused by the death of photoreceptor cells in the central portion of the retina called the macula.

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The Science Stuff

Role of RPEs

Geographic Atrophy

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Symptoms

Charles Bonnet Syndrome/Visual hallucinations

Other problems with vision & AMD

  • problems with visual acuity, photostress, blindspots, color vision, sensitivity to light, depth perception
  • eye problems that have similar symptoms as AMD:

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Risk factors

Age

  • Age is a large factor but can start earlier
  • Much less common are several hereditary forms of macular degeneration, which usually affect children or teenagers. Collectively, they are called Juvenile Macular Degeneration. They include Best’s Disease, Stargardt’s Disease, Sorsby’s Disease and some others.  See Stargard’s Disease section above.

Diet/nutrition (working on this section)

  • diet low in various nutrients & high in others have been linked to AMD.
  • See Nutrition and Vitamins/Supplements under Self-care/self-maintenance below.

Race

Gender

  • AMD more common in women perhaps because women live longer than men

Uncontrolled high blood pressure

Uncontrolled high cholesterol

Smoking

Blue Light

Eye Color

Aspirin & other medications

Other possible causes

  • Biological Process in Wet AMD – some evidence that the photoreceptors are starved by the lack of food (oxygen & nutrients in the blood) and the growth of blood vessels is to compensate for that.

Connection between AMD and Alzheimer’s Disease

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Treatments

  • FDA approved options in the US, injections, implantable telescopes, laser treatment (also outside the US)
Injections for Wet AMD
Telescopic implants
Are there new treatments in the pipeline?
Vitamins (see Self Maintenance/Self Care section below)

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Research/Clinical trials

 

How can I become a part of a clinical trial?

  • A list of sources of information about clinical trials and how to find out for you to participate in.
  • You can search for clinical trials from the links above
  • There are registries where you sign up and enter information about the status of your eyes.  Researchers will use this information to find people that match their research and contact you.  Click here for more information about these registries in the US and elsewhere

Gene Therapy

Bionic Eye/Retinal Implants

  • What is a bionic eye?  It’s also called retinal implant or retinal prosthesis.   Implant is put in retina, camera worn by person sends image to implant which stimulates optic nerve
  • Click here for overview of retinal implants including videos of how it works & interviews with people who have them.
  • March 21, 2016 UK Bionic eye being tested
  • Here’s an article about one being developed at Carnegie Mellon institute in Pittsburgh, PA.

Nutritional Supplements

  • See Vitamins/Supplements section below.

Stem Cells

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Coping with low vision

Low Vision Aids

Wearable Technology

  • coming soon!

Suppliers of low vision aids

Financial Help

Sunglasses

Lamps

Transportation

  • A website for the US where you enter your zip code and transportation options for your area will be shown.

Bioptic Driving

Depression

Checking vision

Amsler Grid

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Self maintenance/self care

Low vision rehabilitation

Vitamins/Supplements

Nutrition

Exercise/Activity

 


More to come, you can check out these posts now

Video: Overview of Assistive Technology for People with Low Vision

Highlight: How do I use Zoom for Apple products?

Highlight: What about Apple’s accessibility features?

News: Top 10 Low Vision Aids for AMD

 


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Home

What to Do

Unfortunately, there are very few things that can be done for dry AMD. My ophthalmologist suggested the AREDS vitamins and sunglasses. These are things that will slow down the progress of the disease but will not cure it.

AREDS stands for Age-Related Eye Disease Study. Several years ago it was discovered that certain combinations of vitamins and minerals will retard the process of deterioration. Today, there are probably a dozen different types of eye vitamins that advertise AREDS formulas. [Lin/Linda: Since we published this in February 2016, we’ve learned more about these supplements.  They aren’t for everyone & they do have risks.  Click here for my page: AREDS/AREDS2: A Guide.]

Taking your vitamins is a wise idea if you’ve got moderate AMD or wet AMD in one eye but not the other.

Wearing your sunglasses is also a wise idea. The research suggests that ultraviolet light, that is blue and purple, is very harmful to your eyes. If anyone in your family has AMD or you have been diagnosed with AMD, it is important to wear sunglasses with UV protection.

Wearing your sunglasses is a wise idea.

I was a good girl. I took my vitamins every day. I also have the most serious, rocking collection of sunglasses you have ever seen. It became a joke. Whatever color I was wearing my sunglasses match. If you were going to be given lemons, you might as well make lemonade, right?

If you were going to be given lemons, you might as well make lemonade, right?

What my sweet, wonderful ophthalmologist did not tell me was how to cure what ails me. In fact, he told me there was no cure–well, ain’t that just dandy? He did tell me that it is a slow-moving process (more on that little mess later) and that my right eye might very well hang in.

Written in February 2016. Updated 2018.

Continue reading “What to Do”