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! 😋 Continue reading “Rock On!”

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News: July 10-11, 2016

 

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Highlight: What can I do to protect my eyes outdoors?

Light from the sun & light from artificial sources can be good for us but also bad for us.  It’s important to know the difference.

Sunlight contains 3 components: infrared, visible & non-visible light which is called the light spectrum. The non-visible light is called ultraviolet (UV) light which is broken down into UVA, UVB and UVC zones.   UV light can cause damage to our eyes, particularly the cornea and the lens. The cumulative effect of UV exposure can contribute to cataracts as well as other eye disorders of the front of the eye.

In the visible light part of the spectrum, blue light reaches back to the retina.  The cumulative effect of blue light exposure has been linked to development and progression of AMD.

Non-visible (ultraviolet-UV) light & visible light
Non-visible (ultraviolet-UV) light & visible light

 

UV light can negatively affect the cornea and lens. Blue light can negatively affect the retina.
UV light can negatively affect the cornea and lens. Blue light can negatively affect the retina.

Click here for a detailed explanation including how light affects our skin & eyes.

 

 

Here’s a diagram showing the parts of the eye that can be negatively affected by different parts of the spectrum.

 

 

Light is also necessary for various functions which is why we don’t want to filter out all of the light:

  • It helps us to see better.
  • It helps us with our visual acuity including ability to deal with contrast.
  • It helps us perceive colors.
  • It helps with various non-visual functions of the body including our sleep/wake cycle which helps us to maintain & use memory, mood and hormonal balance.

Click here for a more detailed explanation of the various components of light.

Click here for an article about blue light and its effect on our sleep/wake cycle.

The key to preventing & stabilizing AMD is to allow our eyes to receive the beneficial rays of the sun while filtering out the harmful rays.  We can do this by using sunglasses outdoors and proper lighting indoors.

Outdoors: Wear sunglasses to filter out harmful rays of the sun

Protect your eyes outside by wearing a hat or visor even on cloudy days. Always wear good quality sunglasses that have the following characteristics:

  • Type of lenses: ones that filter out 99-100% of UVA and UVB rays.  UVC rays are the most dangerous but luckily our ozone layer filters out most of it (this is why it is so important to protect our ozone layer).
  • Look for the ‘blue blocker’ feature which filters out the blue light from the spectrum. Not all sunglasses labeled as such block out the same amount of blue light– Look for a %.  It’s not enough to have an amber or orange tint.
  • As far as which sunglasses are best for you, it can be complicated to find a pair that blocks out not only a high % of blue light but also UVA and UVB light.  Ask your eye doctor/doctors and optician what is best for you.  Some have light meters that can tell you how well your current pair are doing regarding these features.
  • Types of sunglasses: clip-on, regular, ones you can wear over eyeglasses.
  • Make sure they have side panels and top & bottom panels over the top to keep light from coming in around the sunglasses.
  • Search results amazon.com ‘sunglasses filter out blue light’, notice that not all designs have panels all around to keep light from coming in.
  • Great article with things to look for in sunglasses including not only UV & blue light protection, but also glare, glare, visibility and enhanced contrast.
  • This site says that they will give you a free pair of Cocoon sunglasses for participating  in their study. I know people who have participated in this and received the free sunglasses.

Click here for more detailed recommendations about protecting your eyes and skin based on how long you are in the sunlight.  See the section ‘UV Protection Recommendations’.

Coming soon!

Indoors: Filter out harmful rays while providing enough light for tasks

Not only do we need to know about the types of bulbs & lamps that are available but also what we can do to protect our eyes from harmful light that comes from devices we use every day such as computers, tablets, cell phones, etc.

 

 

 

 

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Highlight: What can I do to protect my eyes outdoors?
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Highlight: What can I do to better take care of myself?

 

An overview of self maintenance

Low vision rehabilitation

Overview of types of low vision rehabilitation

Vitamins

In depth post about ‘eye vitamins’

Nutrition

Food high in Lutein and Zeaxanthin

Beyond eating green

Eat right for good general health & eye health

A handful of walnuts a day prevents heart disease, lowers cholesterol. There is a connection between cholesterol & AMD.

Protect your eyes

Click here for more information about how to choose sunglasses & lighting.

Eccentric Viewing

You can teach yourself how to use your peripheral vision to read the printed page with a technique called Eccentric Viewing

Checking vision

Amsler Grid

What it is, how to use it, download a copy

Apple & Android apps

AMD Eye not only has an Amsler Grid but also has a lot of educational information

MyVisionTrack app lets you take vision tests & the results will go to the eye doctor

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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!

Continue reading “Dear Amazon: A Love Letter”

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Resources

Please read the disclaimer.  I will also admit that I have not read every word of every reference.  I’m just trying to provide resources to help you do your own research in addition to what we have found. – Linda…

updated June 17, 2017

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 to take several quizzes to test your knowledge of the disease
  • 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.
  • Click here for a summary of AMD research and developments in the past 12 months (posted June 2016)

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

listed in no particular order

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Websites containing information about AMD

listed in no particular order

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Support

Message Boards including ones from
By postal mail
  • 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

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Books and reading materials

Specific Titles

Sources of Books

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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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Possible causes/contributing 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

Genetics

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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