macular degeneration, macular, diagnosis lutein – My Macular Degeneration Journey/Journal

Personal Message December 11th, 2021 Our Genetic Guns: Part 2

Continued from Part 1

Comment 3. Three (3) Carotenoids, Not Just 2!

I knew that antioxidants are important in battling oxidative stress, so I decided that I should go back to one area that doesn’t get much attention despite its 20-year history of solid research. You probably have heard about 2 of them: lutein and zeaxanthin. There’s a third antioxidant called meso-zeaxanthin.

About abbreviations: Meso-zeaxanthin is often abbreviated as M or Mz, lutein as L, zeaxanthin as Z. Sometimes you’ll see LMZ or LMZ3.

Carotenoids

Lutein, zeaxanthin, and meso-zeaxanthin are called carotenoids. There are MANY others, including beta-carotene. They are pigments that give plants their yellow or orange color. When we eat plant foods, these pigments benefit the body in essential ways.

Macular Pigment

At the back of the eye, at the very center which is known as the macula, LMZ collectively join and concentrate to form a yellow pigment that is called macular pigment (MP). Macular pigment protects the macula from harmful blue light (because it is yellow and can filter out the blue) and provides antioxidants to keep the photoreceptors nourished & healthy to fight oxidative stress.

We Need All 3

The short story is that research has shown that even though there are about 700 carotenoids, only these 3 are found in our macula: LMZ. They have a synergistic effect on each other, which means we need all 3 of them, so they work at optimal levels. Pretty amazing that of all the carotenoids available from nature, the eye ‘chose’ these 3!

Eating Plant Foods

The important thing to know is that if we don’t eat plant foods, we won’t have macular pigment. A researcher quit eating plant foods for 21 days & had virtually no macular pigment at the end of that period. When he resumed a diet which included plants, his macular pigment recovered. https://profjohnnolan.com/wp-content/uploads/2018/05/loughman2012a-bjn-letter.pdf

It also means that if we don’t eat a sufficient amount of plant foods, we don’t have sufficient macular pigment.

It also means that if we don’t eat the plants that contain these 3 carotenoids, we may not have sufficient macular pigment.

Healthy macular pigment, which protects, nourishes the photoreceptors and fights oxidative stress, comes from getting enough of these 3 carotenoids.

With me so far? I hope so!

Comment 4. What Is Meso-zeaxanthin? Why Is It Important? Show Me the Research!

So what is meso-zeaxanthin, and why is it important? To be honest, it depends on who you talk & listen to and what you read. Research frequently comes down to the stories of the people who conduct it. That’s certainly the case with my journey.

The path I followed began when I listened to a September 3rd, 2021, podcast interview with Dr. John Nolan who has been doing research into the 3 carotenoids for the last 20 years (I’ll give you the link in Comment 5). Since then, I have watched countless hours of video, listened to hours of podcasts, and read (or tried to read) LOTS of scientific papers. I have enough of a background, education, and confidence in the scientific method that I felt I was able to understand and assimilate what I needed to be able to follow the research.

Little did I know how MUCH there was, but I was determined to dig through as much of it as I could. That’s why it took so long!

I found that there are many others who were involved and are still involved – quite a multidisciplinary collection of people. I’ll be introducing you to some. These are professionals who have dedicated their careers to the study of macular pigment in the macula which is only about 5.5 mm in the size!

Dr. Nolan (often referred to as Professor Nolan) is not only a scientist & researcher but also a compelling speaker and effective educator. He makes it clear that he’s only one part of this multidisciplinary team that has evolved over his 20-year career. During that time, he became the author or one of the authors of over 100 articles in peer-reviewed journals. You can find all his articles at https://profjohnnolan.com.

In the Beginning

In 2005 in Ireland, John Nolan defended his PhD in Biochemistry on a Wednesday and left for the US on a Friday. He’d applied for and was awarded a prestigious Fulbright Scholarship to study at the Medical College of Georgia. There he worked with researchers who were studying how lutein affects our eyes. [Personal note: My husband got his Occupational Therapy degree at Medical College of Georgia, although he wasn’t there at the same time. I’m always amazed at what a small world it is!]

When he returned to Ireland, he set up the Macular Pigment Research group at the Waterford Institute of Technology. There they began to collect a body of evidence that pointed to the macular pigment as critical to the health of our eyes and as an indication of the level of carotenoids in our brain.

In 2016, he set up the Nutrition Research Centre Ireland (NRCI) where he is the Director. They’re involved in numerous project including the new Supplement Certified program where they are testing supplements to certify that what is on the label is in the product. In 2021, they analyzed 47 nutritional supplements containing carotenoids and found that 64% did not meet the content described on their labels. They are also working with supplement companies, so they make sure that what’s on the label is indeed in the product. Since supplements aren’t regulated, this is welcome news! For more, go to. https://www.supplementcertified.ie

Continuing Down the Path

There’s MUCH more to Dr. Nolan’s biography. I hope you’ve read what I wrote in the Events post (Facebook page) which is more complete.

Here are the reasons I chose to continue:

⁃ Dr. Nolan’s research is based on recognized scientific methodology, where the results are published in peer-reviewed journals. In the world of scientific research, there’s something called the ‘Hierarchy of Evidence.’ Although the details vary from country to country, Level 1 scientific evidence means it was obtained through randomized, controlled clinical trials. Dr. Nolan’s research has been Level 1. https://en.wikipedia.org/wiki/Hierarchy_of_evidence

⁃ He does not work alone. He repeats this over and over in his articles and interviews. He frequently refers to people he’s worked with over the years. This isn’t a ‘one man show.’

⁃ His research depends on objective measures of the levels of the carotenoids in blood, the macula, and the brain. He uses state-of-the-art equipment, equipment that has improved significantly over the years.

⁃ He does not work for any company exclusively. He has tested many supplement products. The main funding for his research comes mostly from government sources, including that of Ireland and the EU.

⁃ When he first started using an LMZ formulation from a specific company, it was with the agreement that he would publish the results no matter what they were. And he did!

NEXT: PART 3 –COMMENT 5. DR. NOLAN’S RESEARCH: HIS QUESTIONS AND ANSWERS

Personal Message December 11th, 2021 Our Genetic Guns: Part 1

A Personal Message from Me, the Founder and Administrator of This Group. December 11th, 2021.

This began as a project for my Facebook Group founded in May 2016 to be an extension of this site. The day before I posted it, I decided that it should be here, too, for anyone who can benefit. I apologize about the ‘comment’ format. I hope it’s not too distracting.  – Linda Chernek Moore.

Who should read this?

Everyone who is concerned about eye and brain health:

• those with and without macular degeneration,
• those with and without cognitive problems, including Alzheimer’s Disease.

In my opinion, that means everyone here.

My Journey Story

I will – for the first time in over 5 years here – tell you what supplement my husband and I take and why. I will take you step-by-step through the process of how I came to select it for us.

This isn’t a sales pitch because I’m not actually promoting a product, I’m actually promoting good scientific research.

Why am I sharing it in what seems to be a ‘big way’? It’s because I think it is important. You probably know how cautious I am about supplements. I do not promote the “It’s a supplement/vitamin, it can’t hurt!” They CAN hurt some people. I have many examples of that.

This is one of the FEW times I’ll be able to say, “It can’t hurt! It’s safe!”

Our Genetic Guns

My dad had advanced dry AMD/geographic atrophy. My husband’s mother had AMD, but we’re not sure of the type. Neither of us have AMD – yet – but research has shown that we each have a higher risk of it than someone with no family history. We each have additional risk factors as well.

There’s another disease for which we both have an inherited risk factor: Alzheimer’s Disease. My mother had it. We think my husband’s mother had it as well, although it may have been another form of dementia.

In memory of Harry & Genevieve Chernek and Elizabeth & Jacob Moore

I’ve shared this quote that’s often used for discussions of genetics:

genetics loads the gun, lifestyle pulls the trigger.

What does that mean? It means that a person may have a specific genetic makeup that predisposes them to a disease, but lifestyle factors DO matter. They can prevent the expression of the genes or can lessen the impact of them.

With family histories of AMD -and- Alzheimer’s, our guns are loaded!

We are COUNTING on those lifestyle factors! I’m 68 and my husband is 70. There’s a third risk factor: age. They’re both age-related diseases, so our guns are REALLY loaded!

Comments

I’ve been working on this in ‘fits and starts’ since early October, so it’s been almost 2 months. I hope I’ve managed to put together a coherent description of this long process. Because there’s been so much to it, I’ve put the details in the comments (on the Facebook page, that is). Here is an outline, so you can go to what you’re interested in if you don’t want to read the whole story.

Outline

1 The Eyes and the Brain: Same Lifestyle Factors
2 Oxidative Stress and Antioxidants
3 Three (3) Carotenoids, Not Just 2!
4 What Is Meso-zeaxanthin? Why Is It Important? Show Me the Research!
5 Dr. Nolan’s Research: His Questions and Answers
6 Where Do People Get LMZ? My Questions and Answers
7 Time to Get Personal: Are The Moores Getting Enough LMZ?
8 Can The Moores Improve Their Diet?
9 Those of You With AMD: Your Benefit
10 Should The Moores Take a LMZ Supplement?
11 Which Brand?
12 More Validation
13 The Beginning and The End

Comment 1. The Eyes and The Brain: Same Lifestyle Factors

The eyes are actually part of the brain, so it’s not surprising that what benefits the eyes, benefits the brain. If you’re not familiar with the connection between the eyes and the brain, here’s a brief explanation. https://youtu.be/4Na0Mj0b_6A

Lifestyle Factors for the Eyes and the Brain

The same lifestyle factors affect them both. Nutrition and smoking are the main ones. I never smoked, but my husband did but quit 40 years ago.

I started my investigation with nutrition because of our continued struggles with the Mediterranean way of eating, which is recommended for both diseases. We try our best to eat healthy but found that we were falling short of the very specific nutrition advice given frequently.

Not Just Healthy Eating

Years ago I found out that ‘eating healthy’ does not necessarily mean ‘eating healthy enough for the eyes’ and now discovered the same thing applied to eating healthy for the brain! Much more to it!

Comment 2. Oxidative Stress & Antioxidants

In both diseases, oxidative stress is a major factor because research has shown that it leads to inflammation, which leads to diseases such as AMD and Alzheimer’s. I wanted to make sure I understood the terms oxidative stress, free radicals, and antioxidants.

What Exactly IS Oxidative Stress?

Think about an apple that you cut and is exposed to the air. It changes & spoils the apple, doesn’t it? Also, think about what rust is. Both processes are from oxidation, which means something is exposed to oxygen and is changed.

Some people say that since we depend so much on oxygen, aging is just rusting! Lovely image, huh? Soon I’ll be introducing you to Dr. John Nolan who says this is “the cost of doing business with life.”

In the body, oxidation is a chemical reaction in a cell when it is exposed to oxygen. Our retinas use the most oxygen of any cells, so that’s a LOT of oxidation!

In these cells, there can be an imbalance of what are called free radicals (the ‘bad guys’) and anti-oxidants (the ‘good guys’).

Oxidative stress is when the ‘bad guys’ are getting control, which is NOT good! Here’s a short video that explains this.
https://m.youtube.com/watch?fbclid=IwAR2pV_Z35dnfoWxdzx9IXdmQSm9t6MfMR1VAkHCsAkFCQHNlB9b3ks69XS8&v=9OgCjhAFCC0&feature=youtu.be

Oxidative Stress and Inflammation

Oxidative stress can trigger inflammation which is thought to cause dis-eases (yes, I purposefully put in the -) like AMD and Alzheimer’s, or at least it’s thought to be a major factor. For more information about the effects of oxidative stress on the body—> https://www.medicalnewstoday.com/articles/324863#summary

Anti-oxidants

So to battle oxidative stress, we need a good and consistent supply of anti-oxidants (that is ‘anti’ for ‘against’ & ‘oxidants’ referring to oxidation and oxidative stress; I’ll leave out that ‘-‘ from now on).

This 15-minute video is the first part of a Continuing Medical Education course which gives a GREAT explanation of the process and introduces the role of the 3 powerful antioxidants that are critical to protecting and nourishing our photoreceptors, which are the cells that convert light to sight. ‘Macular Pigment Supplementation: A Prescription for Vision and Cognitive Health.’
https://youtu.be/-8n9rz2AmXE

I highly recommend part 2 as well.

Next: PART 2 – THREE (3) CAROTENOIDS, NOT JUST 2!

Personal Message December 11th, 2021 Our Genetic Guns: Part 3

Continued from Part 2

Comment 5. Dr. Nolan’s Research: His Questions and Answers

Perhaps the best way to understand how this research evolved over time is to listen to Dr. Nolan describe it in detail before he joins us on Tuesday, December 14th (see the Events section on the Facebook group’s page). It was this podcast from September 3rd, 2021, that helped me to understand how the researchers started by looking at lutein and then measuring and testing all 3 carotenoids.
‘Age-related Macular Degeneration, Supplementation, and Key Research Findings in the Field of Ocular Nutrition.’
http://broadeye.org/nolan/?fbclid=IwAR29J6lcBxCYHkAGuV8wTfsxD7t6cbnNieWFC8U1wLihlVrcStYcR_0DC0g

The Questions

What’s clear from the podcast is that he approaches all his research as you should – with questions. The basic ones were:

  • Can we prevent eye diseases like AMD by enhancing the macular pigment?
  • By optimizing all 3 carotenoids in the macular pigment, can we improve contrast sensitivity (ability to detect differences in shading and patterns), reduce glare issues, improve photostress recovery (ability of vision to come back to normal after exposure to bright light) and other measures of vision in everyone with or without AMD?
  • Does the measurement of the macular pigment give us an indication of the levels of the carotenoids in the brain?
  • Does enhancing the level of carotenoids in the body prevent a disease like Alzheimer’s?
  • Does enhancing the level of carotenoids in the brain help improve memory and cognition?
The Answers

The answers after 20 years of doing study after study were yes, yes, yes, yes, and yes!

He and his colleagues were able to move beyond subjective measures to objective measures that could be validated and reproduced.

Summary

As far as the research about our eyes, they not only looked at the ‘traditional’ measure of vision which is visual acuity, but objectively measured contrast sensitivity, glare sensitivity, and other aspects of vision. Having sufficient levels of LMZ meant significant improvements in these measures.

As far as research about Alzheimer’s, they not only looked at preventing the disease but at improving memory and cognition.

Understand My Excitement?

I hope you understand why I was so interested in the work he and his colleagues did and continue to do 20 years later!

Onward!

After digging through all the research I could and talking to Dr. Nolan personally to fill in the gaps, it was now time to apply the findings from the research to my life and my husband’s.

Comment 6 Where Do People Get LMZ? My Questions and Answers

So MY big question at this point was:

If we need all 3 carotenoids, can we get them from our diet by eating plant-based foods?

Although we can get enough lutein from plant-based foods, it’s harder to get zeaxanthin and almost impossible to get meso-zeaxanthin because it’s found only in the skin of some fish like trout and shellfish. We don’t eat trout or shellfish.

Somewhere along the line before this project, I’d read that zeaxanthin & meso-zeaxanthin are made from lutein in the body.

There are researchers who believe that the body metabolizes lutein and produces meso-zeaxanthin so as long as we’re getting enough lutein, we are fine.

Dr. Nolan says that he believes that SOME people do produce meso-zeaxanthin from plant foods, but not everyone. He’s done extensive testing of people’s macular pigment over the years and estimates that 15% of the population don’t have optimal macular pigment for whatever reason.

What reasons? Not getting enough lutein? Getting enough lutein, but their body isn’t converting it to meso-zeaxanthin? The ‘jury is still out’ on this, but it may be because of a lack of certain enzymes.

Next: PART 4 – TIME TO GET PERSONAL: ARE THE MOORES GETTING ENOUGH LMZ?

Personal Message December 11th, 2021 Our Genetic Guns: Part 4

Continued from Part 3

Comment 7: Time to Get Personal: Are The Moores Getting Enough LMZ?

How do WE know if we are among those who get enough lutein from our food and make enough meso-zeaxanthin from it? We don’t.

What I understood at this point from the research:

This is big!

This is the key to stopping that genetic gun from firing!

Since we cannot get a measure of our macular pigment, we have to assume it’s not as healthy as it needs to be to prevent both diseases.

Comment 8: Can The Moores Improve Their Diet?

My husband and I have had general concerns about our nutrition for some time:

  • We have trouble finding produce that we’re convinced is nutritious because there are well-documented problems with farming, distribution, and availability.

  • We often don’t get the vegetables cooked properly. Sometimes they are in the refrigerator for too long. Our health issues mean that some days we just don’t have the energy to prepare a healthy meal, even though we have the food.

  • We both have diseases for which we take medications, so we know we don’t absorb nutrients from food as well as someone with no other diseases and who do not take medications.

  • Because of our age, we don’t absorb nutrients as well as someone younger.

Even if we were to try to follow the Anti-AMD Diet that I refer to frequently (see Guide 11), the daily recommendation is to eat 6-7 servings of fruit and vegetables a day: 2.5 cups of vegetables & 2 cups of fruit). A serving is ½ cup cooked, 1 cup raw. The vegetables should include leafy greens, but I’ve not seen any recommendations of the ratio of leafy greens to other vegetables.

That’s a LOT! Do YOU eat this every day? We certainly don’t!!

Comment 9: Those of You With AMD

So far, I’ve shared research that says that having the optimal amount of LMZ in the macula is linked to the PREVENTION of AMD which applies to me, my husband, your kids, your grandkids – those of us with a family history – and your friends and neighbors who do not have AMD or a family history of it.

Want Me To Fast Forward? Sure!

You’d like me to fast-forward, right, to the part where I tell those of you who already have the disease what, if anything, LMZ will do for you?

Relief From the Symptoms

Full disclosure: this is not about slowing the disease – at least we don’t yet know/haven’t proven if having optimal macular pigment reduces the risk of AMD progressing to an advanced stage such as wet AMD or Advanced Dry AMD/Geographic Atrophy. Those types of clinical trials take a LONG time.

We DO know it is about:

  • protecting the photoreceptors from further assault and damage from oxidative stress;

  • improving the symptoms that make vision with AMD problematic: problems with glare and contrast, slow recovery from bright light, slow dark adaptation;

  • protecting the photoreceptors from damaging blue light. Here’s a great video where Dr. Nolan talks to Dr. Kerry Gelb about it. https://youtu.be/wpV4dWd3_80

AREDS2 Formulation Plus Meso-zeaxanthin for Some

What HAS been shown is that for those who are good candidates for an AREDS2-based formulation – those with intermediate dry AMD or with wet AMD in one eye but not the other – adding meso-zeaxanthin DOES improve vision while providing that same reduced risk of progressing to wet AMD found in the AREDS & AREDS2 research.

Dr. Nolan’s CREST Trials

In 2011, Dr. Nolan received funding from the European Research Council to do 2 trials called ‘Central Retinal Enrichment Supplementation Trials (CREST).

Their research question was: if we enrich a person’s macular pigment by giving them LMZ as a supplement, can we improve visual function as measured by contrast sensitivity as the primary endpoint and visual acuity, glare disability, and other measures of vision as secondary endpoints.

CREST AMD (sometimes referred to as CREST 2)

There were 2 CREST trials, but I’m leaving out the details, including those for Trial 1. Dr. Nolan can fill us in about it (and a lot of his OTHER research that I’ve not discussed – there’s just been SO much!).

Trial 2 is called CREST AMD, so they studied people with early AMD. Their primary measure was contrast sensitivity. There were 32 tests in all!

There were 2 treatment groups who both got a supplement with the ingredients from the AREDS2 formulation: Vitamin C and E and 25 mg of zinc, lutein and zeaxanthin.

Group 1 also got meso-zeaxanthin.

You’ll find a good graph in this article that shows the results. The article says, “Patients with AMD would have usually been expected to experience a continued deterioration in their vision throughout the 2 years of the clinical trial. Instead, those receiving carotenoid supplementation showed a significant improvement across 24 out of 32 tests of vision. Improvements in vision were particularly marked among those patients receiving all three carotenoids (group 1) compared with those receiving only Z and L (group 2). Of note, 34.8% of trial participants who received all three carotenoids had what is deemed to be a clinically meaningful improvement in their vision after 24 months, compared with 19.6% of patients on the AREDS2-like formulation (see Figure 1).”

‘CREST AMD Trial: Vision Improvement Among Patients with AMD Who Consume Xanthophyll Carotenoids’ https://www.optometricmanagement.com/newsletters/nutritional-insights-for-clinical-practice/may-2018

What If Your AMD Is Beyond the Early Stage?

It’s not been studied, I’m sorry. However, since we know that LMZ protects the macula from further damage from oxidative stress and from further damage from blue light and has proven to reduce symptoms of glare and contrast sensitivity, improves dark adaptation, and improves photostress recovery, I think it’s safe to assume it will have a positive effect for you, too!

It’s Also About Alzheimer’s

No matter what stage AMD you have, LMZ also reduces your risk of developing Alzheimer’s Disease. Every time there’s an article about the link between AMD and Alzheimer’s Disease, it causes quite a stir.

The connection isn’t between AMD and Alzheimer’s: it’s the connection between the eyes and the brain!

Next: PART 5 AND FINAL-COMMENT 10: SHOULD THE MOORES TAKE A LMZ SUPPLEMENT?

Plump Up That Pigment

Recently we had a reader write us about supplements he was using. He reported he had surprising results using lutein and zeaxanthin to combat his age-related macular degeneration. [Lin/Linda: click here to read Surprise and Hope.]

While I am somewhat skeptical about the level of recovery this person reported, I know there is validity in some of what he was saying. We have talked about antioxidants slowing the rate of oxidative stress in the eyes. Lutein and zeaxanthin are both antioxidants and, according to WebRN, they are concentrated in the lens and the macula of the eye.

Lutein and zeaxanthin are found in macular pigment. The macular pigment protects against light rays that can lead to macular degeneration and cataracts.

It appears that lutein and zeaxanthin act like ‘sunglasses’ for the eye. People with low levels of lutein and zeaxanthin in their eyes are often the same people to develop AMD. The same is true of blood concentrations of these two carotenoids.

Lutein increases macular pigment density. Remember nice, plush macular pigment is lacking in us AMD folks. While most articles I read suggested lutein and zeaxanthin were good for preventing the loss of macular pigment, a May 1, 2013, article in JAMA Ophthalmology suggested they might also be able to ‘plump up’ the macular pigment later in the game.

NutritionExpress quoted a study that found lutein improved night vision and perception of contrast. Those are two areas we know AMD shows it’s effects pretty early.

There appear to have been limited studies of lutein and zeaxanthin and lutein or zeaxanthin alone. Most of the popular press articles I looked at segue right into the AREDS research. Remember that lutein and zeaxanthin are main ingredients in that formula.

Where to find lutein and zeaxanthin? All of the ‘usual’ places that we have talked about. Remember to eat your leafy greens such as kale, spinach and collar greens. Also, since lutein will turn things yellow, some farmers will feed it to hens so the yolks of their eggs are a nice, bright color. That means that if you lean towards being a carnivore as I am afraid I do, you can eat eggs and feel a little righteous about eating ‘for your eyes’.

So, as I said before, I am skeptical the lutein and zeaxanthin combo is going to do a great deal for actual photoreceptor loss. Dead is dead. But earlier in the game, when night vision losses and reduced contrast sensitivity start, lutein and zeaxanthin may be excellent ways of slowing the progression of the disease. That means you folks with early signs need to learn some recipes for spinach omelettes, spinach quiche, what have you.

The name of the game is plump up your macular pigments. In order to have a visual future that is bright, you gotta wear your natural ‘shades’.

And on that note, I gotta ‘book’ (leave). I managed to spend 12 hours – 12 hours! – bopping around yesterday. Where? Oh, the Y, waiting an HOUR for my ride, a trip to the technology store, a trip to the grocery store, a meal out, etc . While all that – minus the HOUR waiting for my ride, that is – was necessary, absolutely nothing got done here. Time to channel my inner domestic goddess! Sigh. Type at you later!

Next: Be Patient

Home

Holy Steve Austin, Batman!

“We can rebuild him. We have the technology.” – quote from the 1970s TV show “The Six Mission Dollar Man”.

Now the Pentagon is looking to equip American soldiers with bionic vision! Holy Steve Austin, Batman!

Granted, that might be something we question the wisdom for, but hold on, it is possible we might just benefit!

Lin found an article actually from 2015, but prior to this, the information had slipped right past us. It seems they have been working on contact lenses for macular degeneration. Anyone interested in becoming a cyborg?

We are going that way of course. Pacemakers, neurostimulators and wearable technology are all pointing in that direction. However, some of the wearable technology is clunky and well, ugly. These things go in your eyes and no one will be the wiser. Only my ophthalmologist knows for sure.

Right now everything is experimental. It will probably not come to fruition for several years, but the concept is intriguing. The lenses are a little thick and they don’t allow the eyes to breath as they should. They are not comfortable enough to wear for extended periods.

What is cool about the lenses is you can switch back and forth between 2.8 x magnification and regular vision. Blink one eye for magnification and the other to go back to normal view.

We will keep watch for developments in contact lenses as well as all, other areas of endeavor. Lin commented today on how crazy fast the research and discoveries have been coming.

I know I sound like a broken record, but there is much reason for hope. Together we WILL break the back of this thing.

And since that was less than 300 words, what else is happening? Well, I found an article on lutein. Lutein is a yellow pigment produced by plants. Although the assumption has been lutein is good for your eyes, it is thought to protect against light-induced retinal damage. The article, Safety and Benefits of Lutein, published by the National Capitol Poison Control Center, suggests a great deal more research is needed. This is particularly true for very large quantities of the substance. So far the only side effect known of lutein is it sort of turns you yellow.

According to the article, AREDS did not find lutein to have much effect in slowing AMD. However, there are larger amounts of lutein in eye vitamins than in basic supplements. Go figure.

Right now it appears they have not found any evidence to suggest lutein is harmful but they likewise have not found any evidence that says it is particularly useful, either. As in most areas of life, moderation appears to be the key. And remember, if you start to turn yellow, that is too much! Continue reading “Holy Steve Austin, Batman!”

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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