macular degeneration, macular, diagnosis blue light – My Macular Degeneration Journey/Journal

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

I Vote for Tahiti

Greetings. Now that I have wandered around in prehistory for a while I guess I should get back on track. I did enjoy the wandering, though. I always liked anthropology. Too bad there are so few paying jobs in the field.

On track….Lin wanted me to talk about Seasonal Affective Disorder (SAD) and the holiday blues. SAD first.

SAD is an odd form of depression. As I said before, it probably has some deep roots in the species. It probably is endogenous (from the inside) rather than exogenous (happening as a result of something outside) in its causes.

Except for the season and/or the geography, you cannot point to something – an event – and say that is why you are depressed. No blaming SAD on your boss or your mother-in-law.

SAD occurs more often the farther you get from the equator. It happens more during the dark of winter. It is thought all that darkness messes with your biological clocks. They are still trying to figure out what actually goes on. However, the results of whatever it is include difficulty waking, decreased energy and lethargy, carbohydrate craving, weight gain, difficulty concentrating, decreased libido, withdrawal, depression, anxiety and irritability. Lovely.

Since SAD spontaneously goes away in the summer the thought became to either take the sufferer to the sun (I vote for Tahiti!?) or to bring the sun to her. Enter light therapy. (Apparently we can’t afford Tahiti. Dang.)

Light therapy works. It reduces depression, fatigue, sleepiness and all sorts of other things. Ready for the but? Light therapy is contraindicated for those with retinal disease. That is us. [Lin/Linda here: The problem with light therapy where you sit in front of a ‘light box’ with a bulb that simulates daylight is that it does contain blue light.  The topic of blue light & retina damage is controversial but why tempt fate? Click here for more information on this.]

Now what? Light therapy is pretty much out but there are other courses of action. Antidepressants have been found to be effective. However it normally takes several weeks for antidepressants to reach full effectiveness so you need to start taking them ahead of time. Psychotherapy has had successes. Ditto on the time lag for that, too.

Just to be on the safe side, if you are suffering from seasonal depression, or any depression, you should make sure everything else is in good working order. Thyroid problems can cause depression. Also low vitamin D is a culprit. Dr. Weil reported 70% of Americans are D deficient. Apparently nobody but me is drinking her milk!

Other sources such as Living Well With Low Vision suggest the judicious use of melatonin not only in supplement form but also by regulating its natural flow. Blocking blue light for several hours before bed moves the production of melatonin up in time so it is not still being produced and making you groggy and cranky in the morning.

I would think if you don’t have lenses that block the blue you could get similar results by nixing the screen and listening to BARD books in a dark room, but I have nothing to prove that hypothesis.

Then there are the really ‘radical’ depression fighters like getting up and taking a morning walk! Not only do you get the morning sun but somewhere I read 40% of all depressions respond to exercise. There are studies being done that suggest a rise in body temperature improves mood. I admit to being both a nature freak and an exercise nut, but my positions are being endorsed more and more by science.

That’s SAD. What is SAD? Depression. That’s SAD.

Next, the holiday blues, as requested. Continue reading “I Vote for Tahiti”

News: Sept. 1-2, 2016

News: Apple releases new feature for iPhone that will help people with low vision & others

  • March 2016: Apple just released a new feature for people with low vision & those of us who want to prevent it.  Research shows that blue light from various sources (see below for more info) can adversely affect our vision.  Also, there is some evidence that the blue light from our mobile devices when used at night will make it more difficult to fall asleep.  The new feature called Night Shift allows you to adjust the screen on your iPhone so that it is ‘warmer’.  Read more about it.  You need to update your iPhone’s IOS to at least 9.3 first.

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”