macular degeneration, macular, diagnosis Prevention – 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?

Don’t Panic!

If you ever read The Hitchhiker’s Guide to the Galaxy – and I would recommend you read it if you have not and/or recommend you read it again if you have – you may remember one bit of sage advice : don’t panic!  This bit of advice is offered repeatedly to our hero, Arthur Dent, as he travels through the Universe, fleeing from the destruction of the Earth to make way for an intergalactic bypass and seeking  to find the answer to the questions of life. That answer, by the way, is “42”.

Don’t panic! You don’t have to understand it. Just enjoy the workings of a delightfully warped mind. Thank you, Doug Adams!

And I repeat: don’t panic! Lin informed me there was recently a piece on the possible links between age-related macular degeneration and Alzheimer’s. She remarked a few of you, well, panicked. Don’t do that!

Is it possible? Of course it is possible. The eye is the only part of the brain we can actually see without any messy surgeries or fancy machines. As part of the brain, your eye can, of course, get “brain- diseasey” things going wrong.

This does not, however, mean we are doomed to get dementia!

A couple of things to keep in mind. Number first: these are the very early days of this research. We really do not know much. Number second: the studies I saw were correlation studies. Correlation does not mean causality. In other words, just because two things look to be related it does not mean they are. And it especially does not mean one caused the other!  Serious logical boo boo there.

I found the article I believe the other source was citing. I also found a 2014 JAMA Ophthalmology piece on the Association Between Age-Related Macular Degeneration, Alzheimer’s and Dementia. This was also a correlational study. After comparing nearly 66,000 AMD patients and nearly 17,000 Alzheimer’s patients the researchers discovered “considering AD and other dementia after AMD, their coexistence at the individual level is no different than that expected by chance.” In other words, they did not see ant evidence that AMD leads to Alzheimer’s.

Meaning? Don’t panic!

That said, you, me and just about everyone else I know would not get in line if the sign said “Get your Alzheimer’s here!”  I would run rather rapidly in the opposite direction. In fact, I am “running” in the opposite direction several times a week right now.

I am doing this by actively working on my health and my cognitive skills. Vascular disease seems to be related to both AMD and dementia. It is important to take care of your heart and circulatory system.  Take your medication, eat right and exercise regularly.

Much of my exercise is repetitive, rhythmic activity. That means I am thinking pretty much all of the time I am moving. I tell my hip hop instructor he is my secret weapon against Alzheimer’s. Just trying to figure out his steps and follow along give me as much a mental workout as the actual dancing gives me a physical workout.

I am also still working, playing video games (silly, easy ones), socializing, traveling, writing a blog and reading. In other words, if “use it or lose it” applies to cognitive skills, I am doing all I can to keep using them. Not lose them.

Bringing me back to Doug Adams and The Hitchhiker’s Guide to the Galaxy. If you want a few mental gymnastics, read and follow along if you can. Watch those wicked, left turns. And by all means, don’t panic!

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

Rock On!

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

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

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

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

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

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

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

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

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

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

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

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

written July 9th, 2017

Continue reading “Rock On!”

Preventative Maintenance

Last night I got up to go to the bathroom and I was dizzy, really dizzy. My husband suggested it was my blood pressure so when I got to school I had the nurse check it.

I may not be the gold standard of 120/80 but I was not bad. I hate taking medication but I take it for my blood pressure. As I get older there is not only the possibility of blowing a gasket but there is some (inconclusive) evidence of an association between hypertension and AMD. In any case, I don’t want to make things worse in the eye department.

After being harangued and harassed for years about my blood pressure (part of the reason I have white coat syndrome!) and now taking medication, I was a little dismayed by a medicalxpress.com article reporting there are preliminary findings suggesting some blood pressure meds are associated with much greater risk of developing AMD! What is up with that?

As part of the Beaver Dam studies, they have been collecting data on eyes since 1987. Their data indicated there is a correlation between the use of vasodilators such as some people take for blood pressure and the development of AMD.

Please remember correlation does not mean causality. In other words they could be running together but one is not causing the other. For example, Florida has the largest number of elderly of any state but living in Florida does not make you old.

There are other factors at work. Just the same, something is related between them and we should figure out what it is.

The researchers also found that beta blocker use was associated with increased risk of developing AMD. In particular it was associated with the development of wet AMD. Beta blockers are used for treating heart disease.

Now the article did not say whether the control group also had some form of circulatory system disorder for which they were receiving different treatments. Therefore it is hard to say if it is the medication doing the damage, the underlying, circulatory disease doing the damage or a third factor underlying both the circulatory disease AND the AMD doing the damage. Inquiring minds want to know but we don’t seem to have an answer to that yet.

Because we don’t know, if you are concerned, talk to your doctor and see what he or she has to say before doing anything. Don’t make any drastic changes based on one study. Your doctor is your expert and you should make informed decisions in concert with him.

Me? My high blood pressure meds are diuretics so I don’t need to worry about the meds. However, if I had to guess – and this is a guess from a layperson – my money would be on an underlying genetic snafu wreaking havoc with both our circulatory systems and our eyes.

And until they can lift the genetic hood and make the necessary repairs on that level? Preventive maintenance, my dears, preventive maintenance. Watch what you eat, get your exercise and, yes, take your medication as prescribed.

April 12th, 2017

Continue reading “Preventative Maintenance”

Avoidable Blindness

I still get National Geographic even if I don’t read it cover to cover like I used to. I mean to get back to it – I really do; I love it! – but CCTV lights shining on glossy pages are a bit much. However, when my husband handed me a pile of old Nat Geos (National Geographics) and I saw the cover of September, 2016, I had to read at least one article. The title was The End of Blindness: Winning the Fight to See.

My first thought was “We have made the big time!” Cover of Nat Geo is absolutely the big time in my book. Then I thought “Everything they are saying about the incredible research and the discoveries made really is true.” Nat Geo for me is sort of like Walter Cronkite; if they say it, it is true.

The article has some scary statistics: 39 million people are not able to see, as in no functional vision at all. 246 million have reduced vision. That is rather a lot of people.

The article went on and talked about the research that is occurring. It talked about genetic engineering and stem cells. They also mentioned two different types of ‘bionic eyes’.

In addition, it mentioned that Sanford Greenberg has pledged $3 million in gold to the person who contributes the most to ending blindness by his end date, 2020, of course! (Better get busy on your cure projects!) The Audacious Goal Initiative continues going strong, handing out money to worthy research projects. People are putting their money where their mouths are and getting behind this campaign.

Eliminate all blindness by 2020? Great goal, but probably not attainable. Curing avoidable blindness might be possible. Avoidable blindness?

AMD is my condition and my passion. I am doing well but I would do a heck of a lot better if someone found a cure for this stuff. Problem is, according to Nat Geo, AMD is a piddly 1% of the total picture! It is important to you and me but it barely makes a blip on the world radar.

If our condition is so insignificant in the big picture, what is significant? Refraction errors. That is 43% of the problem. Nearly half of the vision problems of the human race could be cured by giving people glasses.

Guess that means we all get to dig in drawers and find our old spectacles. Call your local Lions Club to find the nearest collection box. Or better yet, Walmart Optical is supposed to collect them. Drop them off the next time you go shopping. Better they are helping someone to see than sitting in a drawer for the next decade or two.

And if you really want to get rid of more sight problems, try cataracts at 33%. In the developing world people with cataracts get to go blind. No one to do the operations is part of the problem. Nat Geo says Niger has 18 million people and 7 ophthalmologists! The other problem is funding. Subsistence farming does not allow one to pay for medical specialists.

One last plug and I am out of here. Nat Geo mentions a worthy charity: SEE International. Stands for Surgical Eye Expeditions. They provide cataract surgeries free of charge.

Done here. Bed time! Night! Continue reading “Avoidable Blindness”

I Have Macular Degeneration…Now What?

June 2023 There’s an announcement that since Sue has not written any new journal pages for some time, the site has been archived until we can decide if the work necessary to make sure all information is accurate and up-to-date can be made. In the meantime, you’ll get some pages ‘not found’ or ‘private’ until that decision has been made. The emphasis for several years has been on the Facebook group.

Where can I quickly find information about AMD?

One of the best resources available is from the Prevent Blindness organization’s website called Guide Me.  You answer a few questions and you will get a personalized guide with important aspects of AMD based on your answers:

Click here to go to Guide Me.

Click here to watch a 4-minute video that explains what AMD is, what causes it, and what can be done about it.

Click here for a good list of Frequently Asked Questions.

Click here to go to a great site maculardegeneration.net where you will find articles written by people with macular degeneration and caregivers. They also have a Facebook page.

What other websites are helpful?

Here are some of our favorites:

Click here to find out should I take the AREDS or AREDS2 supplements?

Click here for a video that covers important information about AMD

Click here for a description of dry vs. wet AMD (we are not recommending any products in this article, but be aware that the site may profit from some products they advertise.)

Click here for an explanation of the stages of AMD (we are not recommending any products in this article, but be aware that the site may profit from some products they advertise.)

Click here to read about what happens if you have AMD in only one eye

Click here for some answers to common questions about depression after diagnosis

Click here for an article about how vision rehabilitation helps prevent long-term depression

Click here for a very comprehensive page about wet AMD

Click here for a very comprehensive page about dry AMD

Click here for an article about how fast AMD progresses

Click here for 10 questions to ask your doctor

Click here to find a support group (I’ve been told that this site may not be up-to-date. Ask your eye specialist for a referral.)

Click here for eye-healthy foods including a Healthy Vision Grocery List (2/14/2022 site wasn’t formatting properly.) Click here to read the answer to the question ‘What should I be eating or not eating to hopefully slow the progression of my AMD?’

Click here to find out what vision changes/symptoms to look for (we are not recommending any products in this article, but be aware that the site may profit from some products they advertise.)

Click here to find out about the people who can help you (what are the differences between the types of eye doctors, do I need to see a specialist, etc)

Click here for tips on how to make the most of the vision you have (section toward the bottom of the page; lots of other good information on the whole page)

Click here for a FAQ (Frequently Asked Questions) from the Macular Disease Foundation Australia.

Click here for a FAQ (Frequently Asked Questions) from our Facebook group.

Where can I do more research?

You can do searches on the Internet – there is a LOT of information there.  We have done a lot of research and here’s how you can find it.

Click here to go to How to Navigate and Search Our Website.

Join our very active Facebook group Our Macular Degeneration Journey. There’s lots more information there as well as support whenever you need it.

How do I move around on the website?

Click here to go to How to Navigate and Search Our Website.

To find about more about me, about Sue, about our project, go to the menu at the top of the page.

Reviewed 02/14/2022

 

 

 

 

News: Summary of AMD Research & Developments for past 12 months – June 2016

Here’s an excellent summary of the research and developments in the field of AMD.  It’s done by Dan Roberts of mdsupport.org which is a site I highly recommend for both information and support.

Click here for the audio with slides presentation. You don’t have to be able to see the slides, the audio is very clear.

Click here for a transcript of the presentation.

 

Highlight: When should I get my eyes checked?

Did you recently get a diagnosis of AMD?  Was it such a shock that you don’t remember much about what the doctor told you about when to get your eyes checked?  Or did you not discuss it at all? The latter situation is all too common.  Of course, a lot of that depends on the type of AMD (dry or wet) and the severity.  It is VERY IMPORTANT that you treat any vision loss as an emergency.  Call your eye doctor as soon as possible.

Here’s a great video showing how an eye doctor should examine your eyes and how he/she would be able to detect AMD.

In the video, the narrator states that everyone who is 60 and older should have a comprehensive dilated eye exam once a year. Of course, if you are having problems you should NOT wait a year, call for an appointment as soon as possible.  However, if you are at higher risk due to race, age or family history of AMD, that may mean you will see your eye doctor more often.

Between eye exams, you should be monitoring your own vision using an Amsler grid on paper or on a computer, tablet or smartphone.  Here is a great article explaining the importance of home monitoring and showing an Amsler grid, where to get one, and how to use it. It also describes the ForeseeHome Monitoring Device which is connected to the doctor’s office.  Click here for that article.

 

 

 

News: CVS faces lawsuit for claim about a store-brand eye product

April 10, 2016

For those who have intermediate and advanced AMD, doctors recommend the nutritional supplement that came through 2 NIH research studies: AREDS & AREDS2.  If you haven’t already done so, please read our post What about those eye vitamins?

The only product that has all the nutrients from the AREDS2 study is made by Bausch + Lomb PreserVision. CVS put their store brand supplement next to this one and labeled it “comparable to ongoing study formula in AREDS2.” A 91-year-old woman was diagnosed with AMD and the doctor prescribed the PreserVision product but because of the label, she switched to the CVS brand because it was half the price.

It is NOT comparable.  To read the whole story, click here.

 

Welcome!

June 2023 There’s an announcement that since Sue has not written any new journal pages for some time, the site has been archived until we can decide if the work necessary to make sure all information is accurate and up-to-date can be made. In the meantime, you’ll get some pages ‘not found’ or ‘private’ until that decision has been made. The emphasis for several years has been on the Facebook group.

You are here to follow the journey & misadventures of a woman named Sue who became visually impaired with Age-Related Macular Degeneration (AMD or ARMD) seemingly overnight.   Join in the tears and laughter. Join in the discussion. Learn more about Age-Related Macular Degeneration. Find resources for your own journey or that of someone you know.

We’re going on a bear hunt….can’t go over it, can’t go under it, got to go through it.

Sue is a psychologist trained in Dialectic Behavior Therapy (DBT) and is using it to help her cope with this vision loss. Her trusted and invaluable friends bring computer, research and occupational therapy skills to this endeavor. Yeah team! We hope you benefit from the fruits of our labors.

We are not offering free psychological therapy.  We are not medical people.   Please read the disclaimer.

This website is divided into 4 parts:

  1. If you have just been diagnosed or if you are beginning your research, here’s a place to start in I Have Macular Degeneration…Now What?
  2. Sue’s journal pages which are like chapters in a book
  3. Highlights & News which are basically blog posts
  4. Links to helpful resources (still under construction)

For those of you who aren’t familiar with websites or blogs like this, to ensure that you will be notified when information is added to the website, you must subscribe by email.  On a laptop & most tablets, you’ll find the place where you can do this in the right-hand column.  On a smart phone, you will find it below the content for the page that you are looking at.

We are still learning, we don’t know everything about this challenging disease.

Courses Coming Soon!

Thanks!

Thanks to Lesley B., Sally R., Dave M. and Gerry M. for going through the website looking for links that didn’t work, things that didn’t read well and typos.  We couldn’t have done it without you.

 

Resources

June 2023 There’s an announcement that since Sue has not written any new journal pages for some time, the site has been archived until we can decide if the work necessary to make sure all information is accurate and up-to-date can be made. In the meantime, you’ll get some pages ‘not found’ or ‘private’ until that decision has been made. The emphasis for several years has been on the Facebook group.

2/14/2022 Because of the rapid and constant growth of our Facebook group, I cannot keep this list updated.  I have a large amount of information available in the Facebook group in Guides which are like chapters in a book or lessons in a course. Plus, in 3 years, the amount of information in the posts and comments is quite substantial. I recommend that you join us there where you can get the information and the support to help you in your journey.  Thanks for understanding. Hope to see you there! Lin/Linda…
I’ve added some pages from that group that might be of interest to you.

Frequently Asked Questions

Click here for the list of Frequently Asked Questions from our Facebook group.


AREDS2-based Supplements

There are several pages on the site that explain what AREDS2 means and who the AREDS2-based products are for. Click here to go to a list of articles.

AREDS2-based Supplements With 0 or 25mg of Zinc

Click here for the list.


Navigating

There are a lot of links here.  I’ve set up this page so that when you click on a link (words that are underlined & in blue or green), a NEW tab will open in your browser and this page STAYS WHERE IT IS.  When you are done with the new page you opened, just close it.  You do NOT need to use the back option.  If you click on a link and the new page replaces this one, I’VE MADE A MISTAKE so please let me know by sending me an email at light2sight5153@gmail.com.  Let me know exactly which link or links do not open a new tab or window.

Errors: If you click on a link and you get a ‘page not found’ error, please let me know by sending me an email at light2sight5153@gmail.com.  Let me know exactly which link or links do not open a new tab or window.

Additions: If you have a link you’d like to add, please email at light2sight5153@gmail.com.


Topics-click below to move to a topic

Links We Like

  • Click here for a GREAT resource where you answer some simple questions and you get a customized guide based on your responses
  • Click here for a great glossary
  • Click here for Low Vision Resources: A List of Lists (such as 8 ways to slow AMD, 15 tips for family and friends, etc)
  • Videos
    • Click here for several videos
    • Click here for the UK Macular Society’s Say Hello to Mac
    • Click here for one that uses illustrations and animation (explains how wet AMD progresses and how the injections work)
  • Click here for a description of dry vs. wet AMD (we are not recommending any products in this article)
  • Click here for an article about depression after diagnosis
  • Click here for a very comprehensive page about wet AMD
  • Click here for a very comprehensive page about dry AMD
  • Click here for a FAQ (Frequently Asked Questions) that answers a long list of questions such as ‘will resting help my eyes?’, ‘Can I see for myself if my retina or macula shows any signs of damage before I have symptoms?’, ‘why don’t new eye glasses help?’, ‘what is meant by degeneration?’, ‘is a macular hole the same as macular degeneration’, ‘I have had dry MD for years. Does this mean I’m going to get wet MD too?’, ‘No one else in my family has MD. Why did I get it?’, ‘can drusen be treated?’, ‘I have changes on the Amsler Grid, does this mean I have MD’, ‘I have Wet MD but my Doctor says there is nothing he can do or no treatment available. Why is this?’
  • Click here for a short introduction to stems cells, what they are and how they can be used.

See what vision is like at the various stages of AMD

Click here to find ways to see simulations of what vision loss due to AMD is like at various stages.


Glossary

Go to the Top


Websites devoted to AMD and Other Forms of Macular Degeneration

listed in no particular order

Go to the Top


Websites containing information about AMD and Other Forms of Macular Degeneration

listed in no particular order

Go to the Top


Support

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

Message Boards including ones from
By postal mail

I don’t know if these are still accurate.

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

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Where to find services

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

Resources for Students

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Books and reading materials

Specific Titles

Sources of Books

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

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Videos

Go to the Top


Personal stories of living with AMD

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Online newsletters

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What is AMD?

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

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What is Stargardt’s Disease?

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

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The Science Stuff

Role of RPEs

Geographic Atrophy

Go to the Top


Symptoms

Charles Bonnet Syndrome/Visual hallucinations

Other problems with vision & AMD

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

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Risk factors

Age

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

Diet/nutrition (working on this section)

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

Race

Gender

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

Uncontrolled high blood pressure

Uncontrolled high cholesterol

Smoking

Blue Light

Eye Color

Aspirin & other medications

Other possible causes

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

Connection between AMD and Alzheimer’s Disease

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Treatments

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

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Research/Clinical trials

 

How can I become a part of a clinical trial?

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

Gene Therapy

Bionic Eye/Retinal Implants

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

Nutritional Supplements

  • See Vitamins/Supplements section below.

Stem Cells

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Coping with low vision

Low Vision Aids

Wearable Technology

  • coming soon!

Suppliers of low vision aids

Financial Help

Sunglasses

Lamps

Transportation

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

Bioptic Driving

Depression

Checking vision

Amsler Grid

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Self maintenance/self care

Low vision rehabilitation

Vitamins/Supplements

Nutrition

Exercise/Activity

 


More to come, you can check out these posts now

Video: Overview of Assistive Technology for People with Low Vision

Highlight: How do I use Zoom for Apple products?

Highlight: What about Apple’s accessibility features?

News: Top 10 Low Vision Aids for AMD

 


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Blog Posts

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We will be regularly adding new information to the Highlights/News section as well as Sue’s Journal pages.  To make sure you are notified when that happens, please go to ‘subscribe by email’.  On laptops & most tablets, you will find out how to do that in the right-hand column.  On a smart phone, it will be after the content.

 

 

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What to Do

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

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

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

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

Wearing your sunglasses is a wise idea.

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

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

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

Written in February 2016. Updated 2018.

Continue reading “What to Do”

Sue’s Journal Pages

WOW, there are a LOT of pages!  We want to help you access them.

June 2023 There’s an announcement that since Sue has not written any new journal pages for some time, the site has been archived until we can decide if the work necessary to make sure all information is accurate and up-to-date can be made. In the meantime, you’ll get some pages ‘not found’ or ‘private’ until that decision has been made. The emphasis for several years has been on the Facebook group.

You can choose:

  1. To START AT THE BEGINNING and follow the pages from one to another like chapters in a book
  2. To get a list of ALL pages
  3. To get a list of pages by MONTH and YEAR (not updated)
  4. To get a selection of Sue’s Best Pages and Musings
  5.  If you want to access pages by a particular CATEGORY, look to the right of this page or at the bottom and choose a category (for example, Cognitive Therapy, Research, etc)
  6. If you want to access pages by a particular KEYWORD, look to the right of this page or at the bottom and choose a keyword (for example, sunglasses, vitamins, etc)
  7. You can also enter a word or phrase to SEARCH the pages in a Google-based search
  8. Below are the MOST RECENT PAGES

Most Recent Pages

Pages for 2020
Pages for 2021

 


Sue on Assignment

Starting in September 2018, Sue’s been doing research and writing on special topics.  Do you have a topic for her? If you do, let me know at light2sight5153@gmail.com.

Current topics include research on several supplements (bilberry, resvertrol, astaxanthin, CBD Oil), independence (what it means to Sue, how to get food to come to you), AREDS2 & geography atrophy, how to conduct an experiment on yourself, non-genetic causes of MD, research on calcified eye spots, money for assistive technology, eccentric viewing, high altitudes & the eye, coping fatigue, research about mitochondria.

Sue on Assignment – Special Topics


Sue’s Musings

Too many pages to read? Here are some of Sue’s quotes with links to her pages.

Sue’s Musings: Then and Now – Part 1 Revisited in 2018

Sue’s Musings: Then and Now – Part 2 Revisited in 2018

Sue’s Musings Then and Now – Part 3 Revisited in 2018

Sue’s Musings Then and Now – Part 4 Revisited in 2018


Sue’s Best Pages

It’s hard to reduce Sue’s many pages to her best ones but these are ones that have been highly rated by our readers in several categories.


Sue’s Toolkit – What She Uses to Do What She Does

Sue’s Toolkit – 2 Years Later – Part 1

Sue’s Toolkit – 2 Years Later – Part 2


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