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

Personal Message December 11th, 2021 Our Genetic Guns: Part 5 and Final

Continued from part 4

Comment 10: Should The Moores Take a LMZ Supplement?

Looks like it would be of benefit to us since:

  1. We are not confident that our diets give us enough LMZ.

  2. We don’t know if our macular pigment and level of carotenoids in the brain are sufficient, which is what this research has shown to be important in reducing our risks of both AMD and Alzheimer’s

Can’t We Just “Pop a Pill”?

Taking a supplement is NOT a substitute for eye- and brain-healthy eating. We will still be eating our leafy green vegetables and colorful fruits and vegetables and other eye-healthy foods to get the other nutrients we need such as Vitamins A, B, C, and E (we were found to be deficient in D so we each take a Vitamin D supplements) and the other essential nutrients. We eat healthy plant-based foods and wild-caught salmon 2 or 3 times a week to get our Omega-3 fatty acids.

First Things First

There are always 2 concerns when considering any supplement:

• Are the ingredients generally safe to take & specifically safe based on one’s medical history & use of medications?
• If they are, which product is the best one as verified by one or more respected, independent testing labs?

Are the Ingredients Safe for Each of Us?

You should ALWAYS talk to your medical doctor before starting a supplement, especially if you have other diseases and take medications. We have different GPs, and we’ve been in touch with them. No problem.

Here are the 2 things I always look for:

  • Are there interactions with the medications we take and the diseases we have? I checked rxlist.com and drugs.com. I checked each of the 3 carotenoids. No interactions for either of us. There are very few issues for anyone, but check it out for yourself.

The 20 years of this research has shown these 3 carotenoids are very safe. There is research to back that up, but it’s beyond the scope of this post.

Comment 11. Which Brand?

I came to this stage in my research feeling confident that taking LMZ was safe for both my husband and me. I had also, to the best of my ability, gone through the research done by Dr. Nolan and his colleagues and felt confident that it met my criteria for solid, scientific research (according to the criteria I listed in Comment 4.)

The next step was to confirm which product was used in Dr. Nolan’s research. It’s what’s currently in the products MacuHealth (available in the US & Canada) and MacuPrime (UK & Europe).

If you watched the ‘Preventing Macular Degeneration Through Science’ video I posted last week (you did, right? ::smile::) you heard Dr. Kerry Gelb say he takes the MacuHealth product when he interviewed Dr. Nolan. Dr. Nolan said he takes it, his wife takes it, and his young daughter sometimes does as well. He and his family have since switched to MacuPrime.

Confusion

If you read the 2014 scientific paper from the CREST trials (you did, didn’t you? ::smile::), you’ll see the product listed as MacuShield. There’s a LOT of confusion about that! I reached out to Dr. Nolan who apologized for it (though it certainly was not his fault). At that time, the company that commercialized the formulation available to Dr. Nolan in the UK was MacuVision Europe, and they branded it as MacuShield. The company was then sold to Alliance Pharma who did not continue with the same formula that was tested. The company in the US that had the world rights to the formulation at the time of the study was MacuHealth (founded in 2006) and the product was then and still is MacuHealth.

Any research after this change in companies was with MacuHealth.

Clarification

Currently, MacuShield is a product only licensed in the UK and Europe. It is a TOTALLY different product than MacuHealth. I confirmed that in an email to the MacuShield company. They were very good and replied clearly & quickly. To be clear (again), MacuShield is NOT the product recommended here.

Bottom Line

MacuHealth products in the US and Canada and MacuPrime products in the UK and Europe are the products that contain the formulation used in Dr. Nolan’s research.

For those who are good candidates for an AREDS2-based formulation, there’s MacuHealth Plus and MacuPrime Plus. For everyone else, it’s just MacuHealth and MacuPrime.

For those who want an AREDS2-based formulation with 0 zinc, you can take MacuHealth/MacuPrime with LMZ and add 500 Vitamin C and 400 IUs Vitamin E separately. That’s the whole AREDS2 formulation.

Please remember my cautions for some of you who are or will be taking an AREDS2-based supplement – those of you with other diseases and who take medications. Please talk to your medical doctor before you start because the doses of Vitamin C and E in the AREDS2 formulation may be too high for you.

Comment 12: More Validation

I could have stopped there, but I wanted to make sure that I did everything for this product that I do for all supplements I choose to take.

Independent Testing

Of course, knowing that others take a product, especially if it’s the researchers themselves, is important, but so is independent analysis of a product.

Consumer Reports

Consumer Reports, a U.S. independent, non-profit organization recommends that since the FDA does not regulate food supplements in the US, it’s important to look for independent labs that test the products to make sure that what is on the label is in it. https://www.consumerreports.org/supplements/how-to-choose-supplements-wisely-a2238386100/

Consumerlab.com

My ‘go to’ independent lab, one recommended by Consumer Reports, is Consumerlab.com of which I’m a member. THEY are confused, too! Even though they are a U.S. company, they tested MacuShield, but not MacuHealth! I emailed them, and they replied that they DO know of the confusion and are working to resolve and report in it. I’m watching for their update.

NSF International

Another source of independent testing referred to by Consumer Reports is NSF International (it was originally the National Sanitation Foundation). The NSF has tested and certified  MacuHealth products (you can see what that means in the Consumer Reports Article above).
https://www.nsf.org/consumer-resources/articles/supplement-vitamin-certification

Supplement Certified

Another certification they have is ‘Supplement Certified,’ another independent lab that I referred to earlier. It’s a new project from Dr. Nolan’s Nutrition Research Centre Ireland (NRCI).
https://supplementcertified.ie/

Company Responsibility

If you listened to the podcast I referred to in Comment 3 (you did, didn’t you? ::smile::), you heard the story of how in one of Dr. Nolan’s clinical trials, when they used an early formulation with just lutein, they unexpectedly found meso-zeaxanthin in it. The trial was stopped, and the company stopped production and sales of the product for over a year. They did produce the new product and the trial continued.

Why Does It Matter?

So if a product has all 3 carotenoids (there are a few), what difference does it make which product you buy?

The lutein in ANY a product probably comes from marigolds. Where the marigolds are grown, what farming methods are used, and how it is processed is important. The processing creates the lutein, zeaxanthin, and meso-zeaxanthin that goes into the tablet or capsule that a person takes. The marigolds used for MacuHealth come from the same fields in Mexico and are tightly managed for specific best-farming methods.

In 2020, Dr. Nolan and colleagues did research (COAST study) to validate a new production method called Micro-Micelle(tm) that MacuHealth uses to make sure the LMZ has the highest possible bioavailability which means how well a substance is able to get into our circulation, to get to the target area, and to do what it’s intended to do. They confirmed that when they take the carotenoids in their ‘free’ form as in the original MacuHealth products, and enhance their stability plus use an oil base because carotenoids are oil solvable, this new technology gives you the best absorption of LMZ.

Read Reviews Online? Misinformation & Testimonials

I rarely do that (they are testimonials, after all), but out of curiosity I went to the Amazon listing for MacuHealth or MacuShield – can’t remember which, and found inaccurate information. Someone asked about MacuHealth and MacuShield: (paraphrasing) “are they the same?” and someone said “yes, they are. It’s the same company, but it’s called MacuHealth in the US and MacuShield in the UK.” WRONG! Yes, I told them that. ::smile::

Here’s another source of confusion. You CAN go to the Amazon US site and buy MacuShield. I emailed the MacuShield company about that since they’d told me they only have a license to distribute their product in the UK and Europe. The seller on Amazon US is a 3rd party distributor. If you purchase MacuShield through Amazon US, you will not get it right away because the 3rd party seller has to get it from the UK!

Got it?

Comment 13: A Beginning and The End

Whew!! Are you thinking, “All this to just pop a supplement? They’re ‘vitamins’ and as such, they can’t hurt!!”

If you’ve been with me long enough, you know how I react to that often-repeated opinion. They CAN and DO hurt SOME people.

However, having gone through this ENTIRE procedure which included talking to the researcher Dr. Nolan and others:

I CAN say that the research shows that taking LMZ in the MacuHealth and MacuPrime supplement is safe!

The Beginning

Change takes time. Making sure we’re getting the proper foods is work and a long-term commitment. We’ve only been taking MacuHealth for 2 months. We’ll be taking it for the rest of our lives.

As for us, I don’t expect to see quick improvements in our vision, but I certainly will be happy to have it be the best it can be as time goes on.

We both have issues with cognitive processing and memory (most likely due to medication), especially word retrieval which is a source of frequent ‘Charades’ (“You know, the thingie that you use for…whatever!”). Maybe someday we won’t have to spend so much time doing that! ::smile::

Not Pulling The Trigger

I started this with the sentence, “Genetics loads the gun, lifestyle pulls the trigger!”

What I HOPE and PRAY I can do is come back in 10 years to say that neither of us have AMD or Alzheimer’s Disease!

The End!

If you’ve read this far, thanks so much! Please let me know if you have any questions.

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?

What if I’m NOT a good candidate to take the AREDS2 supplement? What should I be doing?

Question: What if I’m NOT a good candidate to take the AREDS2 supplement? What should I be doing?

Who is NOT a good candidate to take the AREDS2 supplement? That would be those who do not have AMD (family history or not) or have early AMD. That’s because they’ve not been tested for those with no AMD and only tested in the first AREDS study for those with early AMD where they showed no benefit.

Question: “What if I’m NOT a good candidate to take the AREDS2 supplement? What should I be doing?”

Who is NOT a good candidate to take the AREDS2 supplement? That would be those who do not have AMD (family history or not) or have early AMD. That’s because the AREDS2 formulation has not been tested for those with no AMD and only tested in the first AREDS study for those with early AMD where they showed no benefit.

1. There’s lots of research that says that the best sources of important nutrients are from food. Click here for a great article that covers each aspect of an Anti-AMD Diet including why the Mediterranean way of eating, flavonoids found in oranges and carotenoids like lutein and zeaxanthin and anti-inflammatories are beneficial.

2. Click here for a good video by an the eye specialist who covers the important aspects of an eye healthy diet including fish like salmon 2-3 times a week and a cup of spinach or other dark leafy vegetable a day, nuts regularly and keeping the carbs in the low range of the Glycemic Index (GI). His bottom line: If you don’t eat healthy, then consider supplements but always choose good foods first.

3. Professor John Nolan, Director of the Nutrition Research Centre Ireland, has been studying carotenoids for 20 years. His research found that we have 3 carotenoids in our macula (lutein, zeaxanthin, and meso-zeaxanthin; LMZ) in a clump of cells called macular pigment. Macular Pigment protects the rods and cones, our photoreceptors, from blue light, and also supplies antioxidants to them. Carotenoids come strictly from plants especially leafy green veggies and if we don’t eat them, we don’t have any macular pigment! We need a good and constant supply of LMZ. He found that at least 15% of the population is deficient in LMZ. He also found that although lutein comes from many foods, zeaxanthin is found in less foods, and meso-zeaxanthin only in fish skin and shellfish. Some people convert lutein to zeaxanthin and meso-zeaxanthin, but not everyone so supplementation with LMZ is a safe way to be sure we’re getting the LMZ we need for healthy pigment. Since the eye are part of the brain, what’s good for the eyes is good for the brain.

To learn about Dr. Nolan’s research, I recommend that that you listen to the September 3rd, 2021, podcast from BroadEye titled ‘Age-related Macular Degeneration, Supplementation, and Key Research Findings in the Field of Ocular Nutrition – Prof. John Nolan.’


What should I be eating or not eating to hopefully slow the progression of AMD?

Question: what should I be eating or not eating to hopefully slow the progression of AMD?

Answer: Research showed that those who followed a Mediterranean diet had a 41% reduced rate of development and progression to late AMD. You can read about the research by going to ‘Mediterranean Diet and Incidence of Advanced Age-Related Macular Degeneration: The EYE-RISK Consortium.’ 

Does that apply to those who already have AMD?
This is from the AAO (American Academy of Ophthalmology) ‘New Study Confirms Mediterranean Diet Prevents a Leading Cause of Blindness’:
“SAN FRANCISCO – September 30, 2018 – Evidence is mounting that a poor diet plays an important role in the development of age-related macular degeneration (AMD), a leading cause of blindness in the United States. A large collaboration of researchers from the European Union investigating the connection between genes and lifestyle on the development of AMD has found that people who adhered to a Mediterranean diet cut their risk of late-stage AMD by 41 percent. This research expands on previous studies and suggests that such a diet is beneficial for everyone, whether you already have the disease or are at risk of developing it. “
The Mediterranean way of eating has also been shown to be beneficial for our hearts and our brains.
Is eating this way the ONLY thing I need to do to slow my progression?
When we talk about diet, we are not trying to say that it’s the ‘magic wand’ to managing AMD. It’s one factor in a list of other lifestyle factors that are important.
Don’t beat yourself up if your diet hasn’t been healthy or healthy enough – diet alone did NOT cause your AMD! The good news is that it’s never too late to make changes. Just be patient, it takes the body time to adjust. You’ll find more information about the many risk factors for the development and progression of AMD in ‘Did I do something? Will I get it if Dad had it? What can I do to slow it down?
What specifically is the Mediterranean Diet for AMD?
One thing we need to know is what EXACTLY is a Mediterranean diet for managing AMD? Is it the Mediterranean way of eating with lots of olive oil and pasta? Not exactly.
There are 2 basic components: 1) foods to include and 2) foods to avoid. The article ‘Eating for Your Eyes: Mediterranean Diet & Macular Degeneration’ is the best one I’ve found. Not only does it tell us what to include and what to avoid, it tells us how much we should be eating in each category. [This site has disappeared, but luckily I copied it! I am trying to track down the optometrist who created on the site optomeyeslife].
The articles says, “Are you interested in trying the Mediterranean diet? These tips will help you get started.”
  1. Eat more fruits and vegetables. Aim for at least 6 to 7 servings each day (2.5 cups of vegetables and 2 cups of fruit daily).
  2. Opt for whole grains. Aim for 5 to 6 servings each day. Switch to whole-grain bread, cereal and pasta. Whole grains include couscous, bulgur wheat, and brown or wild rice.
  3. Use healthy fats. Use olive oil instead of butter or margarine. Avoid peanut, safflower, corn, and soybean oils.
  4. Spice it up. Use garlic, herbs, and spices to season your meals and boost flavor.
  5. Eat seafood weekly. Aim for one to two servings per week.
  6. Limit red meat and poultry to one serving or less per week. If you eat meat, choose lean cuts and keep portions small.
  7. Eat dairy in moderation. Eat low-fat Greek or plain yogurt and small amounts of a variety of cheeses.

GO BACK TO FREQUENTLY ASKED QUESTIONS

What are all known risk factors for AMD? Why did this happen to me?

QUESTION: What are the risk factors of AMD? Why did this happen to me?

This post applies only to AMD. Other forms of macular degeneration have different causes and different risk factors.

Risk Factors

The answer is about risk factors for AMD. Quick answers:

1. There’s no way of knowing why this happened to you, so don’t blame yourself. You didn’t know about the disease, so you didn’t knowingly bring it on yourself.
2. Heredity IS a factor but not the cause, so that if you have a first-degree relative with it (parents, siblings, children), you have a higher risk of developing AMD than someone who does not, but that doesn’t mean you will absolutely develop AMD. We have members who have no family history but have AMD. We have members with a family history who never develop it. As a matter of fact, only 10-15% of those with AMD have a first-degree relative with it. For more about genetics & AMD, go to the Genetic Home Reference.
3. If you have certain risk factors, you can work on them. Look at the ones under ‘what you can control’ below.

DETAILS

We talk frequently about risk factors vs causes of AMD. A risk factor is something that has been associated with a disease. A cause is a biological condition that if you have it, you have the disease. We do not know what causes AMD in any individual which is why we often call AMD ‘idiopathic’ which means “relating to or denoting any disease or condition that arises spontaneously or for which the cause is unknown.”

One reason to do this exercise is to understand what can and what can’t be changed. I can’t help but think of the Serenity Prayer: “God, grant me the serenity to accept the things I cannot change, Courage to change the things I can, And wisdom to know the difference.”

What You Cannot Change

A. Age >50; risk goes up as age goes up

B. First degree relative: mother or father, siblings, children with AMD

C. Gene variations on ARM2 and CFH and other specific genes (some related to inflammation); don’t know if not tested

D. Race: Caucasian heritage

E. AMD in one eye (other eye is at higher risk)

F. Female

G. Blue eyes

H. Early menopause as determined by medical diagnosis

I. Light skin

What You Can Work On Changing

J. Smoking, former smoking or exposed to second-hand smoke (less than current smokers)

K. BMI/obesity

L. Uncontrolled high blood pressure (hypertension)

M. Sedentary lifestyle

N. Uncontrolled high total cholesterol

O. Poor nutrition including high fat (especially artificial fats & saturated fats) and sugar intake; low plant-based foods intake

P. Sun exposure: Past (can’t change) and current (can change) sun exposure; maybe blue light exposure (conflicting opinions; no firm evidence); includes living in locations with higher amount of exposure to sunlight

Q. Drug side effects: Aralen/chloroquine, Thorazine/chlorpromazine, Mellaril/thioridazine, Prolixin/fluphenazine, Trilafon/perphenazine, Stelazine/trifluoperazine)

R. Poor dental hygiene

S. Exposure to past (can’t change) or current (can change somewhat) environmental toxins

T. Excessive alcohol use

U. Vitamin and mineral deficiencies or excesses as found through medical testing

V. Type 2 diabetes is associated with a higher risk of AMD. Add this letter after some of you have already responded.

There may be more!


GO BACK TO FREQUENTLY ASKED QUESTIONS

Article: Beyond the tip of the iceberg – AMD and nutrition – Part 4

by Dr. Rohit Narayan is a therapeutic optometrist based in the Midlands in England. October 27th, 2018

Dr. Narayan summarizes what is known about smoking and AMD and what approach he would take (last 4 items):

  • Smoking is a major modifiable risk factor associated with AMD.
  • Smoking increases the risk of AMD two to four-fold.
  • Pack-years smoked better reflects the amount of exposure.
  • Cigarette smoke is comprised of a gas and tar phase containing chemicals with a high concentration of free radicals.
  • Cigarette smoke induces ‘pro-inflammatory’ changes in the RPE, along with oxidative damage.
  • Risk of AMD remains present for many years after cessation of smoking.
  • Passive smoking carries risk of AMD.
  • Public awareness of the link between smoking and ocular health is lacking.
  • Eye care providers have a duty of care to inform patients of the long-term ocular risk of smoking and AMD.
  • Electronic cigarettes are considered ‘safer’ than conventional cigarettes, although more research is needed.
  • Smoking cessation (using Very Brief Advice; VBA) with a discussion of dietary modification is recommended.
  • AREDS and AREDS II formulations only indicated in intermediate/late stage AMD.
  • AREDS formula (beta carotene) carries increased risk of lung cancer in smokers.
  • AREDS II: lutein plus zeaxanthin a better substitute for beta carotene.
Smoking and AMD: Detailed Information

In this article, Dr. Narayan writes, “Smoking status and history is important and, although currently lacking a standardised definition, generally falls into three categories:

  • Current smoker
  • Previous smoker
  • Never smoked

“Several studies have compared different levels of smoking, classified as pack-years, and most of them confirmed a dose-response effect for AMD. Pack-years smoked better reflects the amount of exposure over a lifetime of smoking. To calculate pack-years of smoking, the average of the number of cigarettes smoked per day is divided by 20 to give packs per day and multiplied by the total number of years of smoking.

“Current-smokers have two to four-fold increase in risk for developing AMD when compared to patients that never smoked. Current and former smokers were found to have an increased prevalence of late AMD, although a recent study also found an association of early AMD features with smoking. The increased AMD risk appears to be higher in those patients who have smoked 20 pack-years and more. There is bad news for people living with smokers too: passive smoking, ie living with a smoker for five years or more, increases the risk for AMD among non-smokers.”

For MUCH more, please read the full article.

NEXT: LAYER 5 – Aging of the eye

I’ve not had the time to do this page. Here is the article  ‘Beyond the Tip of the Iceberg: Getting Older’–>https://www.opticianonline.net/cet-archive/5054

The summary says, “The majority of the population have age as their only AMD risk factor.

Discussions of positive lifestyle modifications including:

  • Mediterranean diet
  • Greater consumption of chicken rather than red meat
  • Absence of smoking
  • Regular physical exercise
  • Vitamin D awareness

AREDS-based supplements not indicated.”

Article: Beyond the tip of the iceberg – AMD and nutrition – Part 3

by Dr. Rohit Narayan is a therapeutic optometrist based in the Midlands in England. October 27th, 2018

Layer 3 – Patients with a family history

There are various statistics cited for the impact of family history on the development and progression of AMD.  Dr. Narayan says that those patients with a family history “…should be made aware of the increased risk to their siblings and children, who need to have scheduled eye examinations for detecting the intermediate stage of AMD and be encouraged to assess their own visual acuity using monocular vision testing (usually the Amsler grid) and seek medical advice and urgent intervention if they develop visual symptoms of distortion or reduced vision.” He adds, “…AMD patients should also have an awareness to pass information to their first-degree relatives on the importance of risk reduction strategies including avoiding smoking, a healthy lifestyle with good nutrition.”

Is nutrition important to those whose main risk factor is a family history?  Dr. Narayan writes, “The Rotterdam study looked at the impact of diet in over 2000 individuals who were at genetic risk and were AMD free at the start of the study.”

“The study found that the NRV (formerly RDA) intake of antioxidants, zinc, and Omega-3 fatty acids may reduce the risk of early AMD among those at high genetic risk. Suggestions for what to eat included was based on the sources of the three groups studied in the trial is summarised in table 4.”

Table 4: Recommendations from the Rotterdam study

 

 

 

 

 

 

He summarized his approach for this group:

  • More than 80% of patients with late-stage AMD have a genetic predisposition.
  • First degree relatives, particularly siblings should have routine eye examinations.
  • Observational studies support the use of nutrition/ supplementation whose dosages are inline with the NRV.

Next: Layer 4 – AMD and Smoking

Article: Beyond the tip of the iceberg – AMD and nutrition – Part 2

by Dr. Rohit Narayan is a therapeutic optometrist based in the Midlands in England. October 27th, 2018

Layer 2 – Those with early dry AMD

Dr. Narayan says, “In AREDS, only 1.3% of participants with early AMD as shown in figure 2 progressed to late AMD within five years. The AREDS demonstrated that there was no statistically significant evidence of a benefit in delaying the progression of eyes with early AMD to more significant drusen-related pathology (intermediate AMD) through the use of antioxidant vitamin and/or zinc supplementation. ”

“This review highlights the multifactorial influences of diet and food intake on the incidence and progression of AMD. As diet is a modifiable risk factor for AMD, improvement to diet and food intake. coupled maintenance of a healthy body mass index, healthy diet, physical activity and stress management should be encouraged.”

Approach for this group:

“There is the challenge for patients in this group to obtain the nutrients they need from their daily life. If they smoke or acknowledge a poor diet and lifestyle, then taking a supplement may be beneficial in a general way.

In summation:

  • The progression from early to advanced AMD within five years occurs in just over 1% of patients.
  • Specific studies on how the risk of progression in mild AMD is influenced by diet and lifestyle are few, but several population studies show benefit for overall risk.
  • Taking the pragmatic approach, all that we would say to someone to keep their eyes healthy can be applied here – smoking cessation, advice on sun protection.
  • Adopt a healthy lifestyle: a healthy body mass index, healthy diet, physical activity and stress management.
  • The highlights of the population studies are summarised in table 3 below.
  • College of Optometrists Leaflet ‘Healthy lifestyle, healthy eyes’.
  • There is no evidence to support the use of high dose antioxidant vitamin and mineral supplements for patients who have less than intermediate AMD.
Table 3: Recommendations on dietary intake

Next: Layer 3 – Patients with a family history

Sue on Assignment: How to Conduct an Experiment for Yourself

Lin sent me a copy of the WebRN-Macular-Degeneration News “article” (read advertisement) for Saffron 20/20. I did not know whether to laugh or to scream.

Oh, they were very careful. Nowhere in there did they say “cure”. Nowhere did they say “proven”. They did not even get a toe across the line and use the word “treatment”. All they did was ask why we should not listen to “regular people” just like me and you. Very clever.

I enjoy seeing clever manipulation. The art of the con is time-honored in America and Great Britain and probably a couple of thousand other places. P.T. Barnum opened a museum that was so popular people would come and stay all day. There was no room for any more paying customers.

Barnum solved the problem by putting up a sign saying something like “This way to the amazing egress!” It was only when they were standing on the sidewalk outside the building that they figured out egress is another word for exit! People just followed along.

The word shill is thought to come from the British word shillaber. A shill is a plant. He is the “lame” guy at the medicine show who ends up dancing the jig. He amazes people into buying the snake oil potion.

In other words, never trust testimonials. You just might end up going to see the egress!

That said, I use turmeric every day. Someone told me it would help with my rotator cuff tendonitis and I decided it couldn’t hurt and it just might help. I also started using a muscle rub and tying my arm to my side when I slept. The better not to sleep with it above my head, my dear. Something worked. I have no clue which change it was, but it worked.

Remember how I parrot my father and say do as I say, not as I do? This is another instance of that. I have gone about this turmeric thing totally WRONG. The turmeric people may have me buying something worthless because a yoga acquaintance said it works.

Although I trust the girl who told me about turmeric, she may have sent me to see the egress.

What should I have done? How to Properly Self-Experiment with Supplement, Herbs and Functional Foods is an article outlining how it is done.

First of all, the author suggests you do your research. Is there evidence this stuff may work? In my case, yes, turmeric is a known anti-inflammatory. But after that, I went off the rails.

I didn’t change one thing at a time. I changed three! Wrong! I never researched dosage. Two in the morning and two in the evening seemed right. I also never kept track of my progress. No pre- or post-testing. I failed scientific method 101.

Testimonials, anecdotal evidence, are not “bad”, but they are not the complete truth either. At best, they are not much more than a hint of what might be true. At worst, they are a purposeful con.

If you want – and it will not cost you much in time, money, and perhaps even more importantly, in misplaced faith – go ahead and try things “real people” endorse. But do it wisely. Follow the guidelines in the article, not the guy who tells you the egress is amazing.

Written September 30th, 2018

Next: More Sue on Assignment coming soon!

Back to Sue on Assignment Home page

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

Chocolate!

Hi, looking back into some of old eye news I have gotten. My inbox is way too full. Gotta clean it out.

Last November Healio ran an article on the HULK experiment. I am ignoring the fact that this study is being done with people with diabetic macular edema and not age-related macular degeneration. Why? Because I get a kick out of the name! We love Marvel comics.

In addition to the association with the big, green guy I also liked two other things about this study. First of all, they developed a microneedle for the trials. I know next to nothing about microneedles as a delivery system but the smaller the needle you use on me, the smaller the ouchy. This is a good thing, especially when it comes to eyeballs.

The other thing is they are delivering the treatment through the suprachoroidal space. The suprachoroidal space is looking like it may become the preferred route for the delivery of all sorts of retinal treatments, including RPE replacement.

In short, advances in the treatment of their condition may lead to advances in the treatment of our condition. Science builds on itself. This is a good thing.

And in today’s Healio they are FINALLY talking about an ‘eye diet’ I can follow. Chocolate! According to Healthline, dark chocolate is chock full of antioxidants. It is crazy nutritious. It lowers blood pressure and helps brain function as well as doing several other wonderful things.

Now, as reported in JAMA Ophthalmology (2018) they have done this experiment comparing the vision of people who have eaten a milk chocolate bar and others who have eaten a dark chocolate bar. (And exactly WHY was I not informed about this study? I would have even been in the control group. After all, it is all about science.?)

The results should have us all running out for dark chocolate. Those who got the dark chocolate bar showed improvements in visual acuity and contrast sensitivity two hours later.

Of course, they are not sure about the duration of the improvement. They are also not sure of the real world influence of the improvement. Healio did not suggest any theories about the mechanism involved. In other words, there is a lot of research that still needs to be done. Want to be a lab rat for this study? The line forms behind me!?

And on that note, I think I will wrap this one up. Curl up with the puppygirls and watch some TV on my iPad. Maybe I can find some Marvel comics movies. Do you like Spidey? He’s probably my favorite. Of course, I might be able to talk my husband into going to see the new Avengers movie over the weekend. That has ALL of the heroes in it. Do you think they have dark chocolate bars at the refreshment stand?

Written April 25th, 2018

Next: News From Research

Home

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

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Do As I Say – Again

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

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

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

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

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

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

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

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

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

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

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

Written March 28th, 2018


Next: Bedlam

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Hard to Know

We made it to Fort Lauderdale earlier this afternoon. We thought we could go and walk along the intracoastal waterway this evening but they want $50 to drive us there and back. No thank you! I guess that means you are stuck with me.

We flew Delta from Pennsylvania. My husband is sighted and was able to navigate through the airport for me. Overhead signs telling us about arrivals and departures were nothing I was able to read. However, if I had been traveling alone Delta does provide personnel to help the visually impaired from gate to gate. You can either alert a skycap or have your driver alert a skycap when you pull up at the curb. Detroit airport is massive. While I could have made my way by asking random people for help, it would have been easier with somebody assigned to me.

I looked over the Detroit airport accessibility plan. It was pretty much ADA right down the line. Heavy on physical disabilities. Same for the Lauderdale airport. Visual impairment does not get a lot of ink when they write these things.

I have my phone set so I do not get roaming charges while we are abroad. There are instructions online about how to go into settings to do that.

Both hotels we have been in have courtesy WiFi. Once I had trouble connecting and the desk clerk helped me with no problem. If you let people know you have a vision problem, they will help.

Being a tech novice and also fairly new to visual impairment, I am not sure how to work my phone GPS without having the phone data on and subject to roaming charges. Pretty sure there is a way but I am not sure what it is.

Oops. Yes, there is an online tutorial for that. You have to load the maps you think you will need before you turn off your data. Live and learn.

I got GPS on my iPad alright. I guess I will just need to carry that in case I get separated from my husband and need to navigate on my own. I can get GPS through Google Maps by using WiFi.

And since I have WiFi here at the hotel, I guess I can look at some articles. I have about 100 words to play with.

Just to complicate matters, Medscape recently did a post on genotyping and nutritional supplements. Assel et al quoted three studies all of which suggested there is no significant relationship between your genotype and your chemopreventive diet selection. What they are saying is “to zinc or not to zinc” is not a question. If you are a candidate for nutritional supplements, whether or not you use zinc does not make a difference.

Sometimes it is hard to know what to believe; huh?

Catch ya later. We get on the ship tomorrow around noon. Then I go black until Cartagena.

Written October 30th, 2017 Continue reading “Hard to Know”

Put the Savor Back in Life

As my father got older I really started to worry about his nutrition. Left to his own devices Daddy would prepare a lunch of canned peaches in heavy syrup, a couple of cookies and a bowl of ice cream. It was like dealing with the tastes of a six year old! Sugar, sugar and more sugar!

I eventually learned taste loss comes with old age. Since sweet is the last flavor we can still taste, many of us go to a high sugar diet. Not all that great.

Lost of taste is just one of the sensory losses we experience. Science Digest in February of 2016 ran an article reporting 94% of older Americans have at least one sensory loss. 38% have losses in two senses and 28% have three, four or five sensory losses. Some of these deficits were mild but many of them were serious. The study found 64% of their sample ages 57 to 85 suffered with a significant deficit in at least one sense. 22% had major deficits in two or more senses.

Yikes! This is scary stuff!

Sensory loss takes the savor out of life – literally. It is one of the main reasons people may report a reduction in the quality of life.

Alright, now that we have had the stuffing scared out of us, what can be done about this? Most sources suggest getting any potential sensory loss evaluated medically. Some sensory problems cannot be treated but there are some that can.

Just because some of us have a vision loss that is currently not treatable does not mean the same holds true for other sensory loss. Don’t be fatalistic! Go for help.

Then, of course, there are rehabilitation services. I would like to say rehabilitation services and assistive technology is universally available, but I know better. If you cannot get services funded, use resources such as this website. We regularly try to find things that are free or relatively inexpensive that can help you cope with your vision loss. I expect there are websites for hearing impaired although I am less optimistic about sites on taste, smell and touch loss.

And speaking of smell and taste loss…

In Betrayed by our Bodies – Sensory Loss and Aging Dan Orzech suggests the use of odor detecting technology so we can avoid burning up in a fire (smoke detectors) or being asphyxiated by leaking gas.

Orzech suggested using a little butter or gravy to make the odor and flavor of food more chemically available. (A man after my own heart!). He also reported dehydration can make it harder to taste so make sure you drink your fluids.

Although not being able to see colors well is a hallmark of AMD, do what you can to make foods bright, colorful and visually appealing. Intensely colored foods are rated as more flavorful that dull colored foods.

Given the number of readers and FaceBook members we have, I would suspect more than one or two of you are experiencing multiple sensory losses. Don’t ignore them. There really are ways to put some of the savor back into life!

Written August 4th, 2016

Continue reading “Put the Savor Back in Life”

Too Much of a Good Thing

by Cora Lyn Sears (see her biography at the end of this page)

2016 was a bad year. In the Spring I lost my hair, in the Fall I was diagnosed with wet AMD. How much worse could it get?

About 11 years ago I was diagnosed with mild AMD in both eyes, and took the Vitalux brand AREDS2 eye vitamins faithfully twice a day. (my mother lost her vision to AMD).

At my regular optometrist appointment last Fall it was determined one eye had advanced to wet. I was devastated! I hadn’t noticed much change in my vision, except I needed slightly more light to read and the reading portion of my progressive lenses seemed to have gotten smaller. The Amsler Grid still showed the same few wavy lines and few very light ‘puffs of smoke’ but nothing terrible. The speed of what followed was a bit scary – an almost immediate appointment with a retinal specialist followed by my first injection the next day.

Before this I had known of the injections for wet AMD but hadn’t thought much about them, thinking incorrectly a few injections would stop it almost permanently.

To date I’ve had the first three injections followed by the OCT testing which showed bleeding still happening. Then two more and another test. Still bleeding. Now on my next group of three.

I had begun researching and discovered your Facebook page and website, spending more time online than I thought possible. The more I read, the more I needed to read. The links to articles about the amount of zinc in my eye vitamins being a possible problem led me to search for the ones with less zinc, which were actually not that easy to find. Someone on your Facebook page suggested Walmart, which is where I finally bought them and switched in the late fall. [Lin/Linda: there are several options from Walmart, only PreserVision have the exact ingredients from the AREDS2 research study.  Click here to see what’s available.]

Now the other part:

Last spring I started losing my hair and within three weeks I was completely hairless. Alopecia universalis!  I tried everything my doctor or I could find with no success. An appointment with a dermatologist confirmed my worst suspicions that this was permanent. Apparently an autoimmune problem. Zinc enhances immunity, right? And I had been overdosing on it for over 10 years. So less zinc should help the autoimmune caused hair loss, shouldn’t it?

But then why is so much zinc in the AREDS2 formula when AMD is connected to the immune system as well?

In January I grew a few eyelashes, then came a few baby fine eyebrow hairs. Now, 14 months after losing my hair and seven or so months after cutting down the amount of zinc, I am starting to see a tiny bit of new growth on my head – only perhaps a few dozen or so, but it’s a start.

It’s amazing how everything in our body is connected and works in harmony, until it doesn’t.

An afterthought… Use the Amsler Grid by a window, not in the bathroom. I saw more wavy lines and puffs of smoke there than I had seen in the bathroom.

written July 23rd, 2017


I’m a healthy 70 year old woman. That’s hard to write as I really still feel 40. I live in Victoria, a beautiful city on the west coast of Canada. I’m divorced with two children and one older teenage grandson. I hike about 5 miles three or four times a week with a wonderful group of like-minded women. I’m a retired journeyman painter with varied creative interests such as sewing and photography. I love to travel, whether a road trip or something farther afield. I’ve followed a low-carb diet for years. I’ve had both hips replaced due to arthritis and sometimes I think if this was 50 years ago, I’d be sitting in a corner in a wheelchair going blind.

 Back to Our Guest Authors: Their Stories

Moderation in All Things

Moderation in all things is an old idea. There are 2,000 year old references to it and it has been recycled and reused and rephrased millions and millions of time since then. Just about everyone knows what the saying means but sometimes we don’t practice the meaning.

Right now we don’t have much ‘to hang our hats on’ in the way of treatments for AMD. The one thing that seemed solid – but in actuality may not be all THAT solid – is antioxidants can help to control the development and progression of AMD. And if a little is good, a lot should be GREAT; right? Wrong.

To dredge up another old saying, there really is such a thing as too much of a good thing. It is possible to overdo the antioxidants.

Wikipedia explains having too many bioavailable antioxidant compounds can interfere with the immune system. It’s an underlying cause of allergies, asthma and skin alterations. A reduction of free oxygen species can lead to allergic, hypersensitivity disorders. A common example of this type of disorder is eczema.

Many antioxidants are antinutrients. Antinutrients are compounds that interfere with the absorption of other nutrients needed for health.

There is also a question of how effective our bodies will ‘allow’ antioxidants to be. Poljasak and Milisav in 2012 noted there appear to be homeostatic mechanisms in cells that govern the amount of allowable antioxidant activity. Most people are able to maintain their setpoint of oxidative stress so no matter how much additional antioxidant they consume further decreases in oxidative stress do not occur.

And this is probably a very good thing. Reactive oxygen species are involved in chemicals signaling to regulate a large number of cell functions. The elimination of free radicals would only serve to severely disrupt the functioning of the cell.

Although the biochemistry is beyond my ken right now (and perhaps also beyond my Barbie – ouch! Don’t hit me! It wasn’t that bad!), it appears that in some cases antioxidants are helpful rather than harmful to cancer. Vitamin E and beta carotene supplements increased the rates of lung cancer in smokers.

And while we are talking about things I don’t understand, Poljasak and Milisav shared iron and antioxidants react to one another in weird ways. They also noted the levels of cellular iron increase as we age. Something else too much antioxidants could mess with.

Erica Wickham writing for Livestrong.com shared it is best to get antioxidants from food and not from supplements. Recommendations from the U.S. government are to consume a varied diet with at least five servings of fruits and vegetables and six to 12 portions of grain. In a day an adult should eat about 2.5 cups of vegetables. A half a cup of cooked grain or a slice of whole grain bread is considered a serving.

Once again we are back to my ‘grandma-isms’: moderation in all things and there really is such a thing as too much of a good thing. We have enough going wrong with our eyes. Upsets in cellular chemistry not required. Be smart with antioxidants.

written July 23rd, 2017

Continue reading “Moderation in All Things”

That Preachy Zealot

Here she is again, that preachy zealot for clean living! How are you all doing?

I was looking for new info on AMD and I found this article.

I know I harp on this topic ad nauseam but seeing this in the new releases I could not help myself. I am basically weak (and can be profoundly irritating?).

Anyway, a recent article on nature.com presented research suggesting AMD does not like clean-living folks. People working on the Blue Mountain Eye Study evaluated a group in the late 1990s and then again 15 years later. They looked at physical activity, diet, smoking and alcohol consumption as it relates to AMD. After all was said and done, the researchers decided it would be helpful if people could be encouraged to engage in good health habits.

They quoted data that women who eat well, are physically active and don’t smoke are three times less likely to develop AMD than women who do not have a healthy lifestyle. If you add the complement factor H at risk allele into the mix, the poor souls who eat crap, don’t exercise and smoke really don’t have much of a chance of dodging the disease at all.

What I just quoted was an older study, CAREDS. It used only women. The Blue Mountain people decided to replicate it but to include both genders. They also added alcohol consumption as a variable.

Blue Mountain concluded the combined effects of the four, healthy living variables were better than only one of the habits alone. They hypothesized each of the healthy habits helps to reduce oxidative stress and therefore reduce inflammation, generally thought to be a huge factor in the development of AMD.  [Lin/Linda: Sue talks explains what oxidative stress in her page Electron Rustlers.]

In addition, good health habits can affect the density of macular pigment. Thicker macular pigment can be protective. And BTW, levels of macular pigment can be negatively affected by obesity.

Since I always like to support our friends Down Under, I am making a pitch for healthy living just like the Blue Mountain people. Avoiding bad habits and developing good ones can decrease your chances of developing AMD. It can also reduce the rate of progression of the disease.

Hard to change habits? Absolutely. I am a carbs and salt girl. Horrible for me, but that is what I crave. I have never been a fruit eater.

However, since getting my diagnosis I am drinking a cup of fruit juice every morning. Enough of a change? I doubt it but at least I feel as if I am making the effort.

How long does it take to establish a habit? Google says 66 days. If you can change one thing in your lifestyle and stick with it for 66 days, you have dealt a blow against AMD. Lifestyle changes are one way we can take some of our power back from this disease. Worth a try. Continue reading “That Preachy Zealot”

Timeline Part 1: Advances in Treatment & Care for People with Macular Degeneration

It’s Lin/Linda.  I created this page to go with Sue’s page Not Your Parents’ AMD.  Like some of you, I had a loved one with AMD.  It was my father who was diagnosed with AMD in 2005 at the age of 82.  At the time, I was living 700 miles away and I did not know much about the disease or at what stage he was diagnosed.  He progressed to geographic atrophy (GA), that much I knew.  He was the sole caregiver for my mother who had Alzheimer’s Disease.  He continued to drive (not safely), take care of her and the house.  He was never referred to vision rehabilitation or offered any help other than being told to use handheld magnifiers.

I wondered how things have changed since then which led me to do this timeline review.  Not only have there been advances in the medical end of the field but also in the technology that is allowing people to remain independent for as long as possible.  That is if a person learns how to use the various devices and apps available.

I’ve based the categories of time on an article Age-Related Macular Degeneration
1969 –2004: A 35-Year Personal Perspective by Stuart L. Fine, MD published in 2005.  He says “In 1969, patients with AMD constituted a small part of a typical ophthalmic practice. From 1969 to 2004, the prevalence of AMD has increased, and the methods of evaluation and treatment have changed dramatically.”

I know I have missed many events that have been critical to the history of the treatment & care of AMD.  There is SO much information out there and I’ve tried to use the most significant dates I could find.  Have a suggestion of what to include? Did I get a date wrong? Let me know in a comment or send me an email at light2sight5153@gmail.com.

1st Era: 1969–1979
  • Emergence of fluorescein fundus photography: test used in diagnosis of retinal diseases
  • Development of ‘hot’ (high power) laser photocoagulation, first treatment for wet AMD
  • Relationship of drusen to age-related macular degeneration
  • Other developments:
    • 1976-1977 first personal computers affordable for home use
    • more low vision aids:
      • 1960s large print books became available
      • 1976 large print calculators became available
      • 1969-1970 CCTV (closed caption TV) for reading aid
2nd Era: 1980–1994
  • Clinical trials to evaluate new treatments, especially laser photocoagulation (1979-1994)
  • Development of risk factor data from large and small epidemiologic studies (epidemology is looking for patterns & causes)
  • mid-1980s term ‘senile macular degeneration’ becomes ‘age-related macular degeneration’
  • Other developments:
    • 1982 Vitreous Society was founded; 1983 first meeting attended by 44 retinal specialists
    • 1991 OCT (Optical Coherence Tomography) test used in diagnosis of retinal diseases
    • mid 1980s name changed from ‘senile macular degeneration’ to ‘age-related macular degeneration’
    • 1992 Americans with Disabilities Act (ADA)
    • 1983 first cell phones
    • 1991 World Wide Web for ‘surfing’ the Internet with easy-to-use browsers
    • low vision aids:
      • MaxiAids catalog of aids for orders from people with low vision & other impairments
    • technology/low vision aids:
      • 1982 DragonSystems founded Dragon NaturallySpeaking, speech to text
      • 1988 ZoomText was released which is software to magnify text on a computer screen
3rd Era: 1995–2003
  • Evaluation of radiation therapy for neovascular AMD, not proven to be effective
  • Assessment of pharmacologic interventions for neovascular AMD; Photodynamic Therapy (PDT) “cold” (low power laser) with Visudyne (first drug treatment;  2001)
  • Prevention trials: results AREDS released 2001
  • Other developments:
    • 1995 Amazon sells books online (1998 expands beyond just books; e-books 2000)
    • 1996 Google released
    • 1998 first e-book reader The Rocket
    • 2000 GPS available for civilians; 2001 personal navigation systems available like Garmin and TomTom
    • 2000 Microsoft & Amazon sell e-books
4th Era: 2004 – 2017
  • Completion of ongoing trials for neovascular AMD: FDA approval: Macugen 2004; Avastin 2004; Lucentis 2006; Eylea 2011
  • Earlier identification of eyes at risk: regular use of OCT (Optical Coherence Tomography) and other diagnostic tests
  • Prevention trials: results AREDS2 released 2013
  • Increased number of retinal specialists: eg, American Association of Retinal Specialists (ASRS), formerly Vitreous Society (see 1982 above), has 2700 members representing 60 countries.
  • Other developments:
    • 2011 First baby boomers turn 65
    • 2004 Facebook
    • 2013 first ‘bionic eye’ retinal implant, Argus II approved by FDA
    • technology:
      • 2007 Amazon Kindle e-reader; iPhone & Apple IOS
      • 2008 Android 1.0 & Android phone
      • 2010 Apple iPad
    • technology/low vision aids:
      • 2005 Apple VoiceOver for Mac users
      • 2009 VoiceOver added to iPhone IOS
      • 2010 FDA approved implantable telescope
      • smart glasses/wearable technology
      • 2014 KNFB Reader app for Apple & Android; 2017 for Windows 10
    • ongoing research areas:

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!”

“They Call Me Mellow Yellow”

I’m just wild about saffron….they call me Mellow Yellow….remember that one?

Learning something new every day, I just looked up saffron. Did you know that saffron threads are the stamens (read ‘boy parts’) of the crocus? There is an average of three threads per flower according to seriouseats.com 150 flowers are needed to make one gram of saffron.

Saffron is already outrageously expensive at $2,000 to $10,000 per pound. However, it would be much more expensive if it were being harvested by people earning a decent wage.

So, if you are not hung up on the human rights issue, or the act of emasculating flowers AND if you have the money, saffron may be an AMD ‘treatment’/ supplement for you. There was a 2010 study suggesting daily, 20 mg doses of saffron may serve as protection against progression of AMD in early stage patients.

It seems that other than taste, saffron does have a few things to help justify that crazy price. Saffron includes antioxidants such as carotene, crocin and crocetin. (Wasn’t it nice of them to credit the plants these things were originally found in? Better than ‘George-in’ or something else after the name of the discoverers!) Antioxidants are good for quenching oxygen species that occur because of exposure to light. Remember oxygen species are chemicals which are the natural byproducts of chemical reactions using oxygen. We have lots and lots of those! However, oxygen species can run amok and cause lots of damage unless ’rounded up’ by antioxidants.

Anyway, Falsini et al proposed that by increasing the level of antioxidant protection with saffron there may be a way to allow damaged but still functional cells to recover. That was what their study was all about.

Now as studies go, this one did not appear to be very robust. There were only 25 people in the whole study, both treatment and control groups. That means only about 13 people got the treatment. I like studies with a larger n. That said, after 90 days of 20 mg of saffron daily, their treatment group did show a short-term, statistically significant effect on retinal functioning in those with early AMD.

Am I suggesting you take saffron pills every day? Absolutely not. Even with ‘cheap’ saffron, the pills they were using should have cost about $1.50 each. Many of you are on a fixed budget and another $10 per week spent on a source of antioxidants like that could be a burden.

Also remember, they found an effect in those with early AMD, no other stages.

What I am suggesting is this: there are dietary sources of antioxidants and a nice meal including saffron is one of them. You can get recipes using saffron on sites such as food.com, allrecipes.com and eatingwell.com just to name three.

It won’t hurt and it might even help.

“They call me Mellow Yellow……” Continue reading ““They Call Me Mellow Yellow””