macular degeneration, macular, diagnosis Personal Stories – My Macular Degeneration Journey/Journal

Myopic Macular Degeneration: Understanding the Basics

by Frank Chen (see his biography at the end of the article).

The prevalence of myopic macular degeneration is on the rise worldwide, and new research is providing greater insight into this complex condition. As our understanding of the condition continues to evolve rapidly, staying up-to-date on the latest developments is crucial — starting from the fundamentals.

Myopic macular degeneration is a debilitating eye condition that affects millions worldwide, leading to a gradual loss of central vision. Like age-related macular degeneration (AMD), myopic macular degeneration affects the central part of the retina, causing symptoms such as blurry vision, distorted vision, and loss of visual acuity.

However, myopic macular degeneration is primarily associated with high myopia and pathologic myopia, which affect people at a younger age than AMD. In this article, we will discuss the key terms and definitions related to myopic macular degeneration, its causes and prevalence, and the treatment options available to manage the condition.

Understanding the Key Terminology of Myopic Macular Degeneration

Myopic macular degeneration is an eye condition that is becoming better understood through ongoing research. As we learn more, terms and definitions evolve or are added to our understanding of this condition. Here are some important terms to know:

Myopia: This is a common refractive error that causes distant objects to appear blurry. It occurs when the eyeball is too long, or the cornea is too curved, causing light to focus in front of the retina instead of on it.

High myopia is a more severe form of myopia, usually defined as more than -6.00 D in diopters. It is often confused with pathologic myopia, which causes degenerative changes in the back of the eye.
Pathologic myopia occurs when the eye grows too long, leading to changes in the back of the eye. These changes can cause problems such as blurry vision, difficulty seeing in low light, and even vision loss.

Myopic Macular Degeneration (MMD) is also called myopic maculopathy (MM); it is one of the most common types of pathologic myopia. It occurs when the cells responsible for sharp, detailed vision in the eye start to die. And patients gradually lose central vision.

Myopic chorioretinal neovascularization (myopic CNV) is also referred to as myopic macular neovascularization (MNV) in many publications. It happens when abnormally new blood vessels grow under the macula. As blood and fluid leak into the macula, it damages the retina cells, which leads to vision loss.

Causes and Prevalence of Myopic Macular Degeneration

Myopic macular degeneration is a condition that affects the central part of the retina, known as the macula, and causes it to degenerate. This can result in symptoms such as blurry or distorted vision, dark or empty areas in the field of vision, and a gradual loss of visual acuity over time, similar to age-related macular degeneration (AMD).

The exact cause of myopic macular degeneration is unclear, but several factors are believed to contribute to its development. These factors include elongation of the eye, cracks in the retina, and protrusion or bulging of the back part of the eye (myopic conus).

As myopia is becoming increasingly common worldwide, studies found a rise in the prevalence of myopic macular degeneration. It was projected that by 2050, around 50% of the global population could have myopia.

Furthermore, the risk of developing pathologic myopia, which could lead to myopic macular degeneration, increased with higher degrees of myopia. Age was also a significant factor, as individuals with high myopia aged 40 or older had a higher risk of developing pathologic myopia.

Studies showed that pathologic myopia affected approximately 1-3% of Asians and 1% of Caucasians. Pathologic myopia was identified to be the leading cause of irreversible blindness in several Asian countries. While in Western countries, it ranked as the third leading cause of blindness. Both ethnicity and country of origin seemed to play a role.

Treatment for Myopic Chorioretinal Neovascularization (Myopic CNV)

Several treatment options are available that can help slow the progression of myopic chorioretinal neovascularization (myopic CNV) and improve vision. The primary treatment for myopic CNV is anti-VEGF therapy, which includes several different drugs like ranibizumab (Lucentis), aflibercept (Eylea), and conbercept (Lumitin). Although bevacizumab (Avastin) is not FDA-approved for myopic CNV, it may still be used as an off-label treatment due to cost.

In cases where anti-VEGF therapy is not suitable, verteporfin photodynamic therapy (vPDT) may be recommended. However, vPDT didn’t show significant improvement in visual acuity and could damage the retina cells, leading to a worsening of vision instead. Therefore, intravitreal anti-VEGF therapy is considered the standard-of-care treatment for myopic CNV. As with any treatment, there are benefits and risks. Therefore, it is important to discuss treatment options with your healthcare provider to find the most effective and appropriate treatment for your specific situation if you have myopic CNV.

Key Takeaways

In conclusion, myopic macular degeneration is a serious eye condition that affects millions worldwide, leading to a gradual loss of their vision. While it shares similarities with age-related macular degeneration, myopic macular degeneration is primarily associated with high myopia and pathologic myopia, which affect people at a younger age. With the rise in myopia prevalence worldwide, understanding the latest development, starting from the fundamentals, is essential.

Fortunately, there are treatment options available for myopic chorioretinal neovascularization. And it is fueled by ongoing research and innovation, providing hope for a bright future for people living with this condition.

About the Author

Frank Chen is a highly experienced health educator and medical writer with almost two decades of experience in the healthcare and pharmaceutical industries. He holds a Bachelor of Science degree and an MBA, and is also certified in nutritional sciences and medical writing, bringing a broad range of knowledge to his work. Frank is deeply committed to enhancing patient health literacy and promoting better patient outcomes. His passion for helping patients understand their health conditions is evident in his exemplary education work for ocular conditions at clearsightcorner.com.

Frank has collaborated with top medical experts in ophthalmology, diabetes, and cardiovascular fields throughout the years. He has also played vital roles in developing and implementing patient communication or support projects that have had a profound positive impact on the lives of hundreds of thousands of patients across multiple countries.

Article published Feb. 25th, 2023.

Back: Guest Author Pages

 

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 is geographic atrophy?

Question: What is Geographic Atrophy?

Answer: There are stages of AMD: early dry (everyone starts at that stage even if not diagnosed them), intermediate AMD, and advanced AMD which is either advanced dry which is geographic atrophy (GA) and/or wet AMD. A few things to clarify:

  • Although it is rare, a person can have both wet and GA in the same eye.
  • Not everyone progresses to an advanced stage. 85-90% of all people with AMD have the early or intermediate dry form.
  • Although they all have the word ‘dry’ in them, progression is not necessarily from early to intermediate to advanced dry AMD. The progression CAN be from early dry to intermediate dry. Not everyone progresses beyond that.
  • It’s called ‘geographic’ because when the eye doctor looks at the retina, there are often what looks like ‘islands’ of damaged macular cells.

The Science of AMD

One of the best websites I’ve found is called The Science of AMD. 

If you scroll/move down the page, you’ll find a section about Geographic Atrophy. This site gives you the ability to hear the text (convert text to speech) if you select the speaker icon in the upper right of any section.

I recommend that you take the time to explore this site.

Other Resources

‘What is Geographic Atrophy?’

‘Geographic Atrophy’

Living With GA

Living With GA

My friend of 40+ years Sue has had geographic atrophy for over 6 years. That means she has a blind spot in each eye and is legally blind. She has always led an active life and that hasn’t changed any. At 69, she works as a psychologist, attends multiple exercise classes, kayaks, skis, rides her bike, walks her 2 boisterous dogs…you name it, she does it. The only thing that she does not do that she did ‘before’ is drive. That hasn’t stopped her from going places and doing things.

I’ll let her tell you about living with Geographic Atrophy: “I am not a victim. I have had geographic atrophy (dry age-related macular degeneration) for over 6 years but it has not destroyed my life. It has not destroyed me. Nothing is in ruins and I am not suffering.”

Her story continues at ‘Living With Geographic Atrophy.’

She was enrolled in the phase 3 clinical trial for a drug then called APL-2, now called Pegcetacoplan. At the end of that trial, she was enrolled in the long-term study of the drug which will show the safety and effectiveness of it over a 3 year period. You can read about that and also about her plan to find a stem cell clinical trial! ‘My Diabolical Plan: Stem Cell Transplant for Dry AMD.’

You can read about the early days of her journey on our site ‘My Macular Degeneration Journey/Journal.’ In 2019, she started to write for the site maculardegeneration.net where you can read her articles.


GO BACK TO FREQUENTLY ASKED QUESTIONS

Happy Anniversary to Us!

Hi! Happy Anniversary to us! It was February 2016 we started this crazy journey. For those of you who have been around since nearly the beginning, thank you for sticking around and putting up with us! For you who are newcomers, welcome! [Lin/Linda: To read Sue’s very first page, it’s In the Beginning.  At the bottom of the page, there’s a link to In the Beginning: Revisited where you can read about how her life has changed.]

I had a déjà vu experience at the beginning of the week. It was January 31, 2016, when I went skiing and came home to a drastic vision loss. It was January 29, 2019, I went back to the same ski slope, had the same sort of glorious day on the slopes and…came home to the same vision loss I had when I went. That was a bit of a relief! [To read about that day of skiing, it’s The Perfect Storm.]

I cannot tell you I am above engaging in a bit of superstitious thinking about such things. I was relieved when nothing happened.

Anyway. What does my vision look like now ? I have a fuzzy section pretty much in the middle of things. Anything I want to focus on is not all there. I recognize people across a room by body type or other clues. I can see faces well enough to identify them from about two feet.

If I am running the dogs at the dog park, they can disappear into my blind spot at maybe 20 yards or so. That is a guesstimate. I am definitely not able to drive. There were men working on the road the other day. I did not see them until we were maybe 30 yards away. Not enough distance to stop if I had been driving at the same speed.

Reading is done but is greatly curtailed as compared to my pre-AMD rates. I can read a couple of pages of standard font using eccentric viewing. I have a terrible time reading handwriting, especially handwriting of those I do not know. Heck, sometimes I have trouble reading my own handwriting! [To read Sue’s page describing how she uses eccentric viewing, it’s How She Sees What She Sees.]

I am typing this with a standard, 12 point font. I read it back to myself and find typos at a fair, not excellent, level. That is on my iPad. If I am writing reports on the standard laptop I use 28 point font. After the office staff puts it in standard form, I proof it using my CCTV.

I am able to do most of my life skills just fine…or as fine as I ever did. I have never been a housekeeper or a cook. If I don’t want to resort to using my toys, I sometimes have trouble reading directions. I have trouble plugging plugs into outlets and, at the beginning of the cold weather, zipping my jacket can be an event.

In other words, it is not awful. A few toys, a few tricks and a little help from my friends and I am making it. This is three years into being legally blind.

Again, a reminder: I have geographic atrophy. That is “the other” advanced age-related macular degeneration. Even though we dry folks make up something like 80% of the AMD population, we get short shrift.

Why? Well, we do not have the dramatic changes in vision or the severe damage the wet people can have. We also do not have any treatments. If any one knows the term AMD and he finds out I have it, he will almost always ask about “eye shots”. Afraid not, buddy. No treatment. No cure. This girl is dry.

I gotta go, but I refer you to some pages Lin is putting on the FB page. Not everyone gets wet AMD. Most of us actually have dry.

Do I think I will get wet AMD? Nope. None of my doctors think I will either. GA is my way.

Thanks again for being with us!

[By the way, February is also AMD and Low Vision Awareness Month. What are YOU doing to make more people aware of these two important topics?]

Written February 2nd, 2019

Next: READING AND WRITING

My New Luggage

Hi. Waiting for transportation. What else is new?

I sent Lin a photo of my ‘luggage’ today. This is a joke. I am taking two rolling crates to work. The loaner CCTV has two parts. It has a base and it has a monitor. It is HUGE.

Yes, I am glad I have it. Practicing gratitude and mentally comparing what could be my next month without a CCTV to what it will be with the loaner machine. This is better.

DBT says clients are doing the best they can, but they can do better. Right now I am doing the best I can. Making due with this behemoth of a CCTV. However, it is possible I could do better. I am on the trail of another option. Someone said there are loaners through the library.  If I can get one of those for home and have this one for the office, I will have it made in the shade!

Stay tuned for the next update…and try your local library for equipment loans. They might be able to help.

Later in the evening:

I just sent Lin a picture of the fantastic loaner I got from the library! It is a Freedom Scientific machine and it is very nice. It is a Topaz. When I looked it up on the website I discovered it is  $3400 machine.

And I got it on my library card.

OK. So I also made a donation out of gratitude. Nowhere near the cost of the machine.

When I went in and asked, they had to dig it out from behind some shelving. There were two of them and I took the one closest to me. The better to get it out, my dear.

The library people said they had never used them. Did not know how to use them. They were just taking up space. The solution to my problem gathering dust in a corner.

And how did I get it? I asked.

Having this second CCTV means I can have one at home and one at the office. I will be able to do minimal lugging. I won’t be totally stressed wondering when my CCTV is coming back.

I am thrilled. And all I did was ask.

What else is happening? Well, Lin shared a podcast with me. The name of it is Life After Sight Loss. The narrator – perky little devil! – is a guy named Derek Daniel.

Now I really did not have time to listen to much. I was getting ready for work. There are many podcasts on a variety of low vision/no vision subjects that are included on the site. The site seems to be one you might want to check out.

According to his bio Daniel has been totally blind for some time.  He has Leber Hereditary Optic Neuropathy. (Gene therapy for LHON, by the way, is looking very promising). Daniel appears to have radically accepted his blindness and to have taken part in many different trainings as well as using many technological supports. In other words, he has paid his dues and probably knows what he is talking about.

You might want to check out lifeaftersightloss.com and see what you think. And if you have a CCTV on the blink, check out the public library. It is amazing what you might check out on a library card!

Written June 13th, 2018

Next: Glad They’re On Our Side

Home

 

Rick’s Story: Part 3

Continued from Rick’s Story: Part 2

Our guest author is Rick, a friend of Sue’s friend.

I had an operation for macular pucker in August of 2016. It corrected the problem but within a week or two I began developing a cataract as the surgeon had predicted. In March of 2017 this very exceptional surgeon met me and said my cataract was ‘ripe’ to operate and that the retinal operation had been a success. He showed me pictures where the ruffles had gone away and become smooth thanks to his expertise. I was however unable to get an appointment with his colleague the cataract surgeon until later in the spring. By that time I was back to work and it would have been a problem to lose the week or so recovery time.

I was laid off before Thanksgiving and the cataract colleague met with me again for the normal series of appointments including a physical with my regular doctor. She operated on me in early December. She knew I was a runner and I ended up losing only one week of running but I did little other than walk slowly that week. No lifting or bending. She did an outstanding job with the operation and kept in regular contact with the retinal surgeon. I had my last appointment in early January and the tests showed a complete success although the right eye is not completely cured of the bends in the vision. I got a new glasses prescription which Medicare paid for a bare bones set of new glasses with no frills. My right eye sees so well that I sometimes wear a contact in the left eye and let the right eye uncorrected. I am still going thru some adjustment in my near and far vision.

The right eye no longer is good for reading but my left eye carries that load. The left eye now has a cataract which is not close to ‘ripe’ but will bear watching.

I hope this report is helpful. Choosing a good team of surgeons who work together and communicate is so important. Where I live there are people close by with fine qualifications. I am sorry this update took so long but the process took a long time and I wanted to report upon its completion.

Written Feb. 12th, 2018 Continue reading “Rick’s Story: Part 3”

Impossible Dream? Part 2

continued from Part 1

Clinical Trials

In early December 2017, I received a call from Dr. Regillo’ s office. The subject of the call was to inform me that I have been selected for two different clinical trials. Upon receiving the call, I was immediately uplifted with hope. Then the reality of having to decide about something completely foreign to me overcame me.

One of the clinical trials is testing the ability of ORECEA, a brand name for doxycycline an antibiotic, to retard the spread of dry ARMD. The protocol calls for the oral administration of 40 mg of ORACEA daily. My layman’s understanding of doxycycline is that it is a high-octane antibiotic used to treat difficult infections. I have never been prescribed doxycycline. My only contact with it is my wife was prescribed doxycycline for Lyme’s disease.

I believe that American medicine uses antibiotics too freely in many situations where their use is unjustified. I believe that unnecessary use impairs the ability of antibiotics to work in situations where they are really needed. I also realized that I needed to set that preconception aside and decide about the future of my eyesight based on the facts in front of me.

My first step in the evaluation process was to consider the pros and cons of the ORACEA trial. While the trial would designate my left eye as my study eye, oral administration of the drug would affect both eyes. Since one of my priorities is to preserve the vision in my right eye, a trial that benefited both eyes is a very significant positive. On the other side, I had significant concerns about my ability to tolerate the daily administration of doxycycline for an extended period.

My first outreach was to my internist. I asked him several questions about the implications of taking doxycycline over an extended period and about my ability to tolerate the drug. My internist indicated that long-term administration of doxycycline was an acceptable protocol for the treatment of acne. He did note the potential side effects.

My second outreach was to a college friend who is a practicing ophthalmologist in West Virginia. His opinion was the long-term effects of doxycycline are not a problem until they are. He said that ophthalmologists use doxycycline to treat certain diseases of the eye.

I have decided to decline the opportunity to participate in the ORECEA trial. I believe that doing something every day for two years requires a commitment that I just don’t have. If I’m going to do something every day for two years, I must believe in what I’m doing. With ORECEA, I just don’t believe that it is a potential solution for me. So I will wait for the next opportunity. I am hoping for an opportunity to participate in a stem cell trial. I believe in a cure founded in regenerative medicine. Maybe I’m dreaming the impossible dream but that is my dream.

Note: Bob and Sue both made independent, PERSONAL decisions to wait for the stem cell trials. While they both believe regenerative medicine is for them, it may not be for you. It is important for each of you considering clinical trials to be aware of benefits and risks and how these fit with you and your life. The ORACEA/doxycycline trials would not have gotten this far if they had not demonstrated benefits. Be sure to chose wisely for YOU.


Bob O’Connell is 59 years old. Bob was diagnosed with macular dystrophy in both eyes in 2005 at the age of 47. As the disease progressed, his diagnosis was later changed to macular degeneration. In 2013, his diagnosis was changed to geographic atrophy in both eyes. Bob’s mother was diagnosed with dry type macular degeneration in 2010 at the age of 86. Professionally, Bob is trained as an electrical engineer. Currently, he works for a private equity firm in Dallas that builds large electricity generating stations. Bob lives and works from a home office in suburban Philadelphia. Bob is married and has one son who attends Penn State University. Bob and his family like to travel. Last year’s vacation was a bus tour of western Europe. Bob enjoys music especially blues.

Our Guest Authors: Their Stories

Impossible Dream? Part 1

by Bob O’Connell

Background

I am a 59-year old male. I live in a western suburb of Philadelphia, PA. My ARMD has progressed to geographic atrophy in both eyes. In my right eye, aka my good eye, my vision is corrected to 20/30. I experience double vision in my right eye. The double vision becomes more pronounced as my eyes tire each day. In my left eye, my visual acuity is impaired. I have two large scotomas that impair my visual acuity. When looking at the eye chart, two-thirds of the left-most and bottom of the chart were blank. Of what I could see, I was only able to read the top line on the chart. I could not see three of the 5 letters on that line. I also have a small cataract in my left eye. My relatively normal lifestyle is tied to the sight I have in my right eye.

My journey with macular degeneration started about 25 years ago at the age of 34. During a routine visit to my ophthalmologist, he noted that I had a few spots of different color in my macula. He did not see the need to do anything other than track any changes in future office visits. Over the course of the next 13 years, I went to see my ophthalmologist routinely.

In 2005, we were living in Tulsa, OK. During my routine eye examination, my ophthalmologist noted some abnormalities in the macula of each eye. He recommended that I go see an expert retina specialist and specifically noted that I should focus on one at Wills Eye Hospital in Philadelphia. At the time, he did not know that I was a native Philadelphian, nor did he know that I was working on a job transfer to the Philadelphia region. He did not know the names of any retina specialist at Wills, but he thought Wills was the best place to go.

I firmly believe that, if one has a serious medical condition, one should seek the absolute best doctor in the country for treatment. My first experience with this situation was to find a doctor for my son. He had some developmental delays. We took him to several specialists in Tulsa and received a non-specific diagnosis, Pervasive Developmental Disorder-Not Otherwise Specified. I was not satisfied with the outcome mostly because of the diagnostic process to determine the diagnosis. Each specialist in Tulsa conducted an hour-long interview of my wife and me using a specific questionnaire. They did not bother to perform any observations of my son. After convincing my wife that we needed to find an expert specialist, I began to research physicians who were active in the research of pediatric developmental issues. We found one in Miami and went on a road trip. When searching for a retina specialist, I used a similar search process and found Dr. Carl Regillo. [Lin/Linda: Dr. Regillo’s is Sue’s specialist and she’s written about her visits with him.]

At my first visit with Dr. Regillo in 2005, he identified my diagnosis as macular dystrophy. He recommended that I begin an AREDS regiment, which I did. I have since returned for follow-up visits every October. My condition has steadily worsened. During my visit in 2017, Dr. Regillo noted that my left eye is a candidate for clinical trials but did not cite any specific trial. At this point I realized that I needed to take any step necessary to preserve the vision in my right eye.

Vitamins and Supplements

In 2005 I started taking Bausch & Lomb’s PreserVision AREDS formula. When the AREDS2 formula became available in 2013, I started taking it. In 2016, I became frustrated with the progression of my macular degeneration and decided to talk to the local natural pharmacy about available supplements. Because of those discussions, I added Life Extension’s MacuGuard with Saffron and Astaxanthin and ProOmega CRP. I recently added SPM Active, a supplement to fight inflammation. [Lin/Linda: before you take any supplements, please check with your retinal specialist and medical doctor. Some ingredients may be contraindicated by your medical history.]

Next Page: Part 2 Clinical Trials

Always a Silver Lining

by Vickie Hoecherl

I started noticing that highway overpasses had nonexistent “crimps” in them back in 2009, on a cross-country a road trip.

I already knew I had drusen, but the crimps were something new. I made an appointment with an eye doctor, who diagnosed me with macular degeneration. I was 56 years old and otherwise in good health.

Since then both of my eyes have progressed to advanced dry macular degeneration, also known as geographic atrophy. The crimped distortions have morphed into quarter-mile stretches of highway that simply disappear. Somehow, my brain fills in the blank spot with sky and empty road. (Disconcerting, to say the least.)

Because my geographic atrophy is central, it started messing with my vision fairly quickly. There’s a silver lining though. I became highly motivated to research any lifestyle change that could help me.

Along the way, I’ve discovered some things about myself.

I love throwing whole-foods together in new, creative ways. I take pictures of my creations before I eat them — compiling photos and recipes for a future website.

I’ve also learned that I actually CAN walk a 5K with running intervals every day. Now, on days I don’t run, I know that something is missing.

I’ve discovered that good and bad things tend to happen simultaneously. I lost my driver’s license, but now I cherish my walks outdoors even more. Some relationships have faltered, others are deeply strengthened. I have a deeper empathy for all handicapped people – my soul is larger now.

I never dreamed I would start to lose my vision. I was always the one who stopped to look at an exquisite flower or beautiful sunset. I still drink in beauty wherever I see it. But now I know that, sometimes, it’s a smile that lights up a room.


Vickie Hoecherl is 65 and lives in northern Michigan, where she managed a branch of her county’s library, part-time, for 15 years prior to her retirement two years ago.  Before moving to her current town, she  traveled with her husband in his Air Force career.  She also has worked six years as a journalist, writing and editing newspaper copy.  She loves the outdoors and she walks every day through whatever weather northern Michigan can bring. Each summer she travels even farther north for hikes along Lake Superior and for time at a north woods cabin.  She takes photographs (quite often of her lunch before she eats it) and is planning a website to share the nutrient-dense recipes she has developed.


Our Guest Authors: Their Stories

Rookie in Training: Part 2

My family doc referred me to an Ophthalmologist in 2008, after a Walmart Optometrist told me I had cataracts. I’ve been going to this eye doc annually and he told me to take AREDS2 and use over the counter lubricating eye drops. He started mentioning that I had drusen and this August, I asked him point blank – “Do I have AMD?” I don’t know if he would have given me an official diagnosis if I hadn’t forced the issue. He saw blood in my left eye, so did Fluorescein Angiography and referred me to a Retina Specialist. I had doubled up on my Aleve (naproxen) because of pain from a dental procedure and told him that was probably the cause. He thought I had developed high blood pressure or diabetes, or possibly Wet AMD.

Two weeks later, I had my first appointment with the Retina Specialist. By then, I had cut back on the Aleve and the blood had almost disappeared. He did an OCT of my macula for both eyes and said I had dry AMD but was fine otherwise. No wet AMD. I also went back to my family doc who agreed with me that it was probably the Aleve.

Neither of my eye docs ‘believes’ that my DNA could affect the how eye vitamins work or don’t work. The retina specialist thinks future research will debunk the research that showed zinc being harmful to some of us. If AREDS2 is the only recommended eye vitamin, they refuse to consider alternatives. And they refuse to prescribe the ArticDX genetic testing. Although I am a rookie with AMD, I feel like I am more educated on AMD than either of my specialists, thanks to Lin and Sue and all of you.

Until I can figure out my DNA, I am taking the Walmart Vision Formula 50+ which has only 9 mg of zinc. I was already taking extra zinc every time I caught a cold – or thought I might catch a cold – and I have cut back on that and take an extra 25mg with the meal when I am not taking the eye vitamins. (That magic potion to strengthen my immune system also includes 500MG of Ester C and Echinacea.)

I’ve been using an Amsler Grid for a few years now and try to eat healthy. I never smoked. So for now, I think I am doing all that I can. I feel like I am ‘in training’ for a future with AMD. I will follow the research, donate to the foundations supporting research, and let Lin and Sue be my coaches. Knowledge is power.

Back to Our Guest Authors: Their Stories

Rookie in Training: Part 1

by Joann Davis

Because my mother and grandmother both had AMD and my son found out he had AMD genes when he did 23andMe DNA testing several years ago, I have been waiting for my diagnosis for years. I was involved in a Jules Stein Eye Institute GARM II study for people under the age of 65 with parents with AMD but no diagnosis yet. I was so pleased to find Sue’s blog and the Facebook Group and was an early ‘joiner’. I hated the play “Waiting for Godot” and hated “Waiting for AMD”. [Lin/Linda: just checked & Joann has been a follower of our website/blog for 1 year and 5 months…wow, she was one of the first!]

I wish I had taken a more active role in my mother’s eye health. She had cataracts removed at an early age (56) and always ate healthy because she knew that was the best way to stave off AMD. I remember the ‘Swiss Chard’ year when she was eating a lot of Swiss Chard. My dad had a big garden, so she had access to lots of fruits and vegetables. She always said “My mother got AMD when she was in her 80’s and I didn’t get it until I was in my 90’s”. (Makes me feel like a failure to be diagnosed at 70.) I bet she really had dry AMD earlier than her diagnosis. She also had Glaucoma. She had one or two shots in her ‘good’ wet eye, and thought it made it worse, so didn’t get any more shots.

Because of her age, she was having other health problems which made adaptive technology a challenge. Again, I wish I had been more proactive. She was using hearing aids and having small strokes, had serious gall bladder and colon issues, high blood pressure, and arthritis. Because she used a walker, she didn’t get the exercise she was used to. She was on a restrictive diet so she couldn’t eat the healthy fruits and vegetables anymore. She never completely lost her sight, but I know she was depressed as her world kept shrinking. She lived to 95 1/2, and passed away in 2012.

Next: Rookie in Training: Part 2

 


About Joann

Joann Davis is 70 and has recently been diagnosed with mild dry AMD in both eyes. Her mother and grandmother both had AMD and her son has the genes. Joann also has cataracts, floaters and dry eyes. With glasses, her vision is 20/40. Joann spends most of the year in northern Illinois and the winters in Ft. Myers, Florida. Joann is retired but very busy with numerous board memberships. Joann exercises every day, beginning with yoga, crunches, planks, ‘boy’s pushups’, weights, and then a long walk. Joann wants to do as much travelling as she can while she can still see and is heading to Italy soon and plans to go to South Africa next year. Joann’s career was in technology and cyber security sales, and she still belongs to cyber security organizations where she gets to hang out with the FBI and Secret Service.

 

 

My Journey with Early AMD

by Nancy Alberts

I have early dry AMD in both eyes. I always knew I would get it because all of my mother’s brothers and sisters as well as her mother had it and all eventually had to give up reading and driving. I am 75. I regularly asked the eye doctor about it. I was always myopic and in my forties developed presbyopia. I have worn progressive lenses for many years.

About a year ago my left eye became suddenly much worse and my eye doctor didn’t know why. He sent me to a retinologist who gave me the bad but expected news. I have been seeing the retinologist every three to four months and things have remained stable. I also have floaters which are very gradually fading.

I got new glasses, but the optician could only correct my left eye to 20/40. I have been seeing double since then. I see better if I close my left eye. I’m glad I learned to wink my left eye, but I never could close my right eye. This is difficult to write because I keep seeing the line above. Everything is blurry probably because I am seeing two different images. I am going to ask the retinologist about seeing an optician more experienced in this problem to find out if there is a better solution.

I have early cataracts, but the doctor says surgery will not improve my sight at this point.

I am still driving even though street signs are a little more difficult to read. I’m thinking that I should be planning for transportation problems for the rest of my life. I can’t bear the thought of being housebound.

I am trying to do whatever I can to maintain my eyesight, but I am discouraged and confused by ‘scientific’ studies which conflict with one another. Some are obviously supported by companies that want to sell their product.

I am taking an AREDS2 supplement, eating avocados and eggs and even some fish (which I hate). I eat dark green leafy salads with olive oil which I should be eating anyway.

I have other health problems, including cancer and had a hysterectomy over two years ago. So far, I am in remission, but the cancer competes with the AMD for my worries. I check in with this group every day waiting for the magic bullet to cure AMD.


Nancy Albert is a member of the Facebook Group My Macular Degeneration Journey/al.  She is 75, a retired attorney who has 3 children and 7 grandchildren.  She rides her horse Rider regularly.   She says “I have had cancer and several other health problems which I am learning to live with.  I pray every day for a cure for AMD. ”

Back to Guest Authors: Their Stories

Preparation: Start Now!

Greetings from a rainy Labor Day weekend. Supposedly this rain is a Harvey leftover. We had a ‘little flood’ here six years ago right about this time of the year. What a mess! Hubby and I did not get much of that; we are on a hill. However, I went into town to do some shoveling and needs surveys….Never got so sick in my entire life. Flood mud crud is nasty business, folks. If you are helping, wear masks and goggles. Take any innoculations they offer. I was sick literally for weeks.? Once more, try to profit from my stupidity!

Of course, the good news is what doesn’t kill you can make you stronger. Except for the food poisoning I don’t think I have been sick since! ?

Anyway, in the States Labor Day is the unofficial official end of Summer. That means today before the rain we were preparing for cool weather. The houseplants came in from their summer home on the deck. I picked the tomatoes that had not yet ripened for my friend’s mother. She is supposed to make a mean green tomatoes pie. Ran into a little snag in trying to close the pool, but that will get done before the leaves start to fall.

Preparation. We prepare for Fall. We prepare for holidays. How many of us prepare for vision loss?

Many of you are in the early stages of this disease. I truly believe research will soon make it possible to slow or even arrest the progress of AMD. I believe you could easily be spared the worst of AMD. But just the same, preparation is a good thing.

Harley Thomas is blind. Last February he wrote a piece in his blog. The title was, of course, How to Prepare When you Are Going Blind. Harley (he looks like a nice guy so I will refer to him by his first name) says preparation can give you a sense of control. He agreed with other people I have read in saying starting now to learn skills will make things much easier later.

Harley would approve of us all learning about our disease. He would also approve of how we are coming together for support. He talks about ADA and telling your employer about your sight loss.

There are lots of references and links on Harley’s page. One of them is entitled “What to Tell Your Employer When You Are Loosing Your Sight”. I have not read it yet but somehow I don’t think it says to call work in hysterics directly from the doctor’s office like I did!

Harley suggests habilitation/rehabilitation and independent living courses. He also talks about getting your house organized. All good ideas with links to how to posts. [Lin/Linda: if you’re curious, there’s a difference between habilitation & rehabilitation.]

What Harley does not talk about are transportation and finances. To me, these are huge! I believe trying to get services and benefits from the government can be one of the most convoluted and frustrating things you have ever done. It literally took a couple of months to line up transportation. I had straightened our financial house several years ago when I got an inheritance. If I hadn’t, the income loss could have been problematic. Looking into the basics of getting around and doing what you can to get – and keep – your finances in order is crucial. Start now. You will be glad you did.

Written September 3rd, 2017 Continue reading “Preparation: Start Now!”

Behind the Wheel: Part 2

continued from Behind the Wheel: Part 1

In talking about why Yvonne drove after three years, she mentioned independence. Speaking personally, I would love the freedom of driving. The shared ride service here is a pain. The other night I was picked up at the Y and had to ride along to a local restaurant. We waited half an hour for the second passenger to get his ‘stuff’ together and get it on the road.

You have heard me scream plenty about rolling out of bed at the crack of dawn to get 10 miles down the road ‘only’ an hour early.

Unfortunately, shared rides come with many indignities and inconveniences.

Right now I have started ‘jonesing’ for a chocolate milkshake. The drive-in restaurant is only a mile away but it is on the other side of a busy road. I’m thinking that trying to get across that road for a milkshake – even a large! – may not be a good idea. Shared rides and going by foot may not leave a lot of room for spontaneity, either. (Yes, I do have a husband. He is dieting!)

I would love the freedom of driving. After all, this is the woman who renewed her license so she could feel like a big girl! But I don’t drive. The eyes in this head are too far gone.

Yvonne did her homework. Good idea. I did my homework for my bike riding. I know my routes pretty well. Today the Children’s Museum next to the Y had a street fair. The road was blocked. Detour ahead! On my bike, I just dismounted and walked through the fair. In a car, I would have been rerouted to a road I rarely travel. Things happen. The best laid plans of mice and men and all that. You cannot always count on doing what you planned to do.

Yvonne mentioned problems with family members using the car, not transporting her and not doing basic maintenance. Without the family members she is on her own. Maintenance? I used the same garage for nearly 40 years. I think if I asked, they would have come for me. I find it is always good to inquire. You don’t know what people will do for you until you ask.

My license has not been pulled. A few weeks back I went and had it renewed. No one questioned me. No one threw me behind bars. I can legally drive but I don’t.

Many states are not good about making sure people who should not drive don’t. And even if they pull licenses, the roads are full of unlicensed drivers anyway. Driving or not driving is the decision each of us must make for himself.

Would I ever drive? Perhaps. With a very sick husband or a very sick dog or if I had fewer resources, perhaps. I have said it before: I am blessed with resources. What would I do if truly stuck? Dunno. Maybe, but right now, my answer would still have to be no.

But what did the Yvonne do?

written August 6th, 2017

Continue reading “Behind the Wheel: Part 2”

Behind the Wheel: Part 3

continued from Behind the Wheel: Part 2

Did we leave you with a cliffhanger? Silly, of course: Yvonne drove! I am relieved to say she got home without injuring herself or others. The car still has all its pieces…but what did she say about it and will she make a habit of it?

If this were a TV show, we would have gone to commercial break, but since we have no sponsors, there will be no words from our sponsors…just returning to what she said:

Yvonne could not see any gauges – including the speedometer. Her dark glasses caused that problem. The lighting and shadows would change along the route and it was bothersome. She planned a route that took her a bit out of her way but allowed all right turns.

Yvonne felt a bit exhilarated she had accomplished the trip. She admitted she had been scared and said she would not make a habit out of it. Many places she has to go are in congested areas and she does not want to drive there.

So successful experiment for our reader. She tried it and I will not. I see waaay too many problems with it. What is the difference? And more importantly, should you try it yourself??????

I have no idea of how much vision loss Yvonne has. I know my loss pretty much precludes driving. But if no one ever said not to drive, how do we make that decision? [Lin/Linda: Yvonne lives in Alabama where they never check a driver’s vision. Also, her doctor never tells patients NOT to drive.]

I found a resource at AAA. That is the American Automobile Association. They have a special website SeniorDriving.aaa.com.  AAA suggests we try the informal driving self-assessment tool 65 Plus to start. If the informal assessment suggests we have problems, a professional driving skills evaluation can be conducted. This can be done at a driving examination site for your state DMV or by a trained driving instructor. AAA also suggests you might want to spend some time with an occupational therapist driving rehabilitation specialist.

Some of these services can be pricey. The OT evaluation may be between $200 and $400 according to AAA. If you need lessons, it may be $100 an hour. Rather doubt any of this is reimbursable by insurance but you can try.

When I tried to find the website for 65 Plus I came upon a number of things that look kind of cool. The self assessment is 15 questions. Also offered are videos with tips for dealing with physical changes that come with age and a site that will tell you how your medications may affect your driving.

Other resources are offered through AARP, American Association of Retired People. The AARP website page Driver Safety suggested there is a driver’s program only 12 miles away from me. Amazing.

My research also suggested some states do driver’s training for ‘mature’ drivers. Check in your state for information.

So, going back to my original statement. Specifically, I am supposed to be the only bad influence on this website.

Please, please, please do not try to drive just because one reader had a successful jaunt. Think you might be able to drive? Have your hunch tested by a professional.

Been told you should not drive? For your sake, my sake and everyone else’s sake, listen, for crying out loud! You don’t want to ruin lives.

And if you are being pigheaded and driving in Pennsylvania? Tell us where you are. I want to stay far, far away.

written August 6th, 2017

Continue reading “Behind the Wheel: Part 3”

Behind the Wheel: Part 1

TGIF! Happy Friday! In real time it is the beginning of August, 2017. As usual, Lin and I have been pleading for ‘audience participation’ in the website and we actually got some! One of our readers who is also a member of our Facebook group has been sharing some of her experiences with Lin. Yvonne submitted a comment on one of the recent website pages.

Now a little background on how things work with comments. As I said when we started, Lin and I retain the right to refuse anything we do not think is appropriate. Advertisements are a no no. Anything too private or salacious may have us twittering over it but it does not get to the website???. Also, I reserve the right to remain the only bad influence for the site!

That said, Lin got Yvonne’s comment & did not publish it but asked her if we could share parts of what she wrote. She gave her go-ahead.

The topic? Driving with vision loss.

Why just pieces? First reason is this: it scared the bejesus out of us. Second reason: Yvonne outlined how she was going to try driving and we do not want any of you getting any ideas! We will not be responsible.

Yvonne said she was getting behind the wheel for the first time in three years. Oy vay. I would be afraid to get behind the wheel after a year and a half. I have asked my husband to let me drive in a huge empty parking lot and he has refused. He’s afraid of me behind the wheel, too.

I know riding my bike at 7 or 8 miles an hour there are some things I don’t see until I am right on top of them. At 4 times that speed I would be running right into them. Also, coming back from kayaking the other day my friend stopped for an accident. The cop was directing traffic but I could not see his hand signals. What would I have done if I were driving? Gotten out of the car and asked him what he wanted me to do?!?! Don’t think so.

Yvonne said she is not able to see the dials and gauges. Not sure what kinds of gear display her car has but I know I used to have one with the gears on the dash. Putting a car in drive instead of park or reverse instead of drive could be the last mistake I ever make….or ever want to make.

And even if a driver believes he is happily in control at 20 miles an hour in a 35 mph zone, what about the person driving behind him? Could he guarantee he is not going to pass on a double yellow and have a head-on collision? Or how about when he starts blinking his lights, honking his horn and screaming at you? Could someone even hope to maintain composure?

Another point: Yvonne was driving in a neighborhood. While I know kids don’t play outside as much as we did, some still do. Kids are unpredictable and do not follow the rules. Kill or maim a child? Kill me now because I am not sure I could live with that.

So those are my initial thoughts on that. Why did she want to drive? What happened? Tune in next page!

written August 5th, 2017

Continue reading “Behind the Wheel: Part 1”

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

The Other Shoe, My Journey: Part 1 by Cathy Meggs

This has got to be some kind of mistake.

It was March 2008, I was 38 years old, married with an 8-year-old daughter and 10-year-old son. I had just started a new career as an insurance agent. My calendar was FULL! On top of my regular schedule with a busy young family – Boy Scouts, Girl Scouts, gymnastics, shooting club, & band concerts – I also had Chamber of Commerce meetings, Optimist meetings, and insurance training. So when I realized that I was about to run out of contact lenses, I hastily made an appointment at JC Penney Optical. I had a coupon for a free exam and discounted glasses.

When the day of my appointment came, I had scheduled a lunch with a client that afternoon, figuring an hour at the most for my optical exam. The optician at JC Penney was an older guy, kind of slow and deliberate. Why was he taking so long to look in my eyes with the magnifying eyepiece thingy? “C’mon dude, not another look!” He left the room and came back, looked into my eyes again! Then, he handed me a grid and said “Close one eye and look at the center. Can you see any wavy lines? Are all the grid lines visible?” “What the heck kind of test is this??” I reported that yes, all the lines were visible and straight. Now can I get my prescription and go? Then he stops me cold – he tells me he thinks I have macular degeneration. He sees drusen. He wants to refer me to a specialist and sends me on my way with an Amsler Grid. These are words I had never heard before – macular, drusen, Amsler Grid. ­­­­­ I had to reschedule my lunch, then back to the office. Where I Googled ‘macular degeneration’.

Well, that JC Penney doctor must be confused. Or maybe I heard him wrong. Macular degeneration is something that elderly people have to deal with. I’m sure this is all a mistake, but I made the appointment with the specialist anyway.

Two weeks later, I had my husband drive me to the specialist (RS#1). When I made the appointment, they told me to bring a driver because I would be dilated and unable to drive. So now my husband has to take off work, I have to take off work. What an inconvenience!! We get there, and the waiting room is full of canes, walkers, wheelchairs (and the grey haired people attached to them). “Oh whoa…this is definitely a mistake. I should not be here.”

But the doctor confirms that I do indeed have early dry macular degeneration, and explains what drusen means. He tells me to look at my Amsler Grid every day. If there are any changes, call him immediately. “Ok, bye-bye, see you in a year and go to Walmart to get AREDS vitamins”. Except he didn’t actually talk to me, he spoke to my husband only. So we left there with no intention of ever returning.

I had made a connection through the Chamber of Commerce of a local Optometrist who I really liked. I made an appointment with him to get a 2nd opinion – or 3rd opinion actually. Dr. Murphy would explain that macular degeneration was related to myopia (I was -7 and -7.5 at the time). He ran all the tests I would soon become so familiar with. He gave me the same advice – check the Amsler Grid daily and report any changes, take AREDS daily and fish oil pills.

And I did check it daily. And read horror stories on the internet of blindness, lacquer cracks, bleeds, wet AMD, dry AMD. I read so much, I overloaded myself. I had none of the risk factors – I have a slim build, never smoked a day in my life, no family history, general good health.

This has got to be some kind of mistake. I really don’t have time to go blind.


Cathy Meggs is 47 years old, married with 2 children – ages 17 and 19. She lives in a small rural town in southern Illinois, population 1900. Cathy is an insurance agent, School Board Secretary, President of the local newsletter, and involved in many different organizations in town. Her husband is amazingly supportive, but temporarily living in South Korea for a job assignment. Cathy’s children are well-balanced, achievement driven, considerate and kind. She and her family love to travel the world. Her daughter has been to Belize, Korea, Japan, Spain and Portugal. Her son spent his senior high school year in Japan, and currently attends University of Mississippi. Her hobbies include planning the ‘next trip’, writing, and community service work. She currently has wet myopic macular degeneration in remission (left eye) and advanced dry in the right eye.

Continue reading “The Other Shoe, My Journey: Part 1 by Cathy Meggs”

The Other Shoe, My Journey: Part 4 by Cathy Meggs

I have enough shoes.

I now have advanced dry in both eyes, with some distortion. I’m officially at 20/50, but I have to struggle to see that line. I drive during the day, but read street signs? Heck no! I have a magnifying app on my phone (Galaxy Note 5 with a good size screen, extra-large font and bright back-light). I have a flashlight app. I have motion sensitive LED lights in all the closets, and my bedroom & bathroom. I have a magnifying mirror mounted in my bathroom so that I can see my face better. I try to look at restaurant menus online first so I can magnify the screen and read the entrée choices and not struggle in the dimly lit restaurants to see the menu. I sit with my back to the windows so my eyes & brain don’t struggle trying to adjust to light, dark, light, dark. I cut my toenails and pray I don’t clip my skin in the process. I read on a Kindle, or my computer. My kids are 17 and 19 now. My choice to stop driving at night coincided with my daughter getting her driver’s license. Ever had the stress of being with a new driver while also not being able to see very well at night? Not fun! But, it was actually very good timing – she could take me places at night, and I didn’t feel like a nuisance because she needed the supervised driving hours.

My vision is distorted as I look at the grid, or at my computer screen but not so much when I look out at the world in general. I just bought a 43-inch television to use as a computer monitor in my office. My work is very much connected to the Internet and computer, so I spend many hours a day looking at the screen. I have blue light filters on everything I can think of. I have a strong support system with my husband, sister, and children. I have many people in my community that I call friends, and can depend on to help me with rides at night if I need them. I belong to many organizations in town, and I run the local monthly newsletter. I have deadlines, appointments, and meetings to go to. My son is away at college, my husband is on a temporary job assignment in Korea (1 year left to go), and my daughter is an independent young lady.

Sometimes, the frustration of no night-driving gets to me. Sometimes, the feeling of impending doom of vision loss is hard to bear. “Waiting for the other shoe to drop” is a phrase I feel in my soul. (I actually looked up how that phrase came to be – pretty interesting!) I am blessed beyond belief. I still don’t have time to go blind, and I have finally been forced to admit that macular degeneration is a big deal. As for the future, I guess I really don’t like to think about it. Whatever happens, I will handle it and adjust.

And frankly, I have enough shoes – “so whoever is in charge can just keep that ‘other shoe’”.

Continue reading “The Other Shoe, My Journey: Part 4 by Cathy Meggs”

The Other Shoe, My Journey: Part 3 by Cathy Meggs

The diagnosis was not a mistake.

My worry and anxiety kicked into high gear after this. Ok, so clearly the diagnosis of macular degeneration was not a mistake. This is happening. For real. I couldn’t sleep, couldn’t get my mind off of it. I got a prescription for a low dose anti-depressant that I took for a year and weaned myself off of. I had two more bleeds in the next few years. One happened while I was loading the washing machine – all of a sudden, there was a dark spot in my field of vision! The other happened while I was driving home from lunch with a friend. Poof! A dark spot in my field of vision. One bleed & injection happened the day before my 40th birthday party which was planned at a bar – a smoky, loud, fun bar. I wore one contact lens (because I didn’t want to wear my ugly glasses to a bar) and went to my party anyway! You only turn 40 once!

Each time, the Avastin doses cleared up the problem and my vision went pretty much back to normal. The recovery after each injection was about 48 hours. I consulted with RS#3 after a few years with RS#2. I still thought maybe there is some mistake with this diagnosis. Maybe there is some treatment that was being overlooked. RS#3 gave me the same tests, and the same advice. His equipment seemed newer and less noisy. Do you know how hard it is to hold your eye open while they shine an extremely bright light into it, and not blink while a random loud shutter-closing noise makes you jump? It is pretty near impossible! Injections administered by this RS are not as painful as RS#2, and the recovery time seems like hours rather than days. I am staying with RS#3. And my trusted local optometrist Dr. Murphy.

Over the years, I have made some adjustments to my life. I have not had a bleed in 4 years. My night vision is horrible. I stopped driving at night about a year ago, only night-driving around my little town that I know like the back of my hand. A few weeks ago, I stopped night driving even here in town. Everything is getting blurrier in general. When I was at 20/30 corrected. I thought, oh man – if this is as bad as it gets, I can totally handle this! 20/30 is no big deal! Then, at 20/40 corrected , “meh it’s not so bad! I can handle this, it’s no big deal.” Continue reading “The Other Shoe, My Journey: Part 3 by Cathy Meggs”

The Other Shoe, My Journey: Part 2 by Cathy Meggs

Four hours later.

In August 2008, I noticed a blank spot on the grid with my right eye. So off to Dr. Murphy I go. “Yep, you have a blind spot. Keep watching the grid. Keep taking your vitamins. Eat fish and salads.” I told myself it was really no big deal! I can see perfectly fine with both eyes – the left eye & my brain just fills in the small missing spot. Then it slid out of my mind again.

I had a busy, busy life – I didn’t have time for this!

I often volunteered at school, going on all the field trips I could, attending class parties, etc. I ­­­ volunteered to chaperone my daughter’s 3rd grade field trip to The Magic House in St. Louis. It was April 2009. We had lunch at a park. It was sunny and warm, a beautiful day. One of the other moms had on a striped shirt. When I looked at her, I did a double take. The stripes on her shirt were swirling around. Now that is weird! One eye, normal. Other eye, a big swirl. One eye, normal. Other eye, a big swirl. Ok, what is going on? I knew from all my reading, that it had something to do with the macular degeneration. I didn’t say anything to anyone. Driving home, one eye – normal. Other eye – yellow stripe on the road had a swirl. One eye normal, other eye – the electric wires swirled. When I got home, got the kids settled, I dug out the Amsler Grid. One eye, normal. Other eye – “OH MY GOD!”

I called the next day and made an emergency appointment with Dr. Murphy, my trusted optometrist. He said to come in immediately. While seated in his office, he calls a RS that he networks with. BAM – I’ve got to go the next day to see him. I drive myself to RS#2’s office. RS#2 confirms I have a ‘bleed’ but my insurance won’t pay for the injection if it is administered the same day as the diagnosis. What!?? Ok, so I have to come back tomorrow. Again, I drive myself, thinking no big deal. People get injections all the time. I was very worried and anxious, but I am not a baby or a complainer. I told my husband “It’s no big deal! I’m sure I’ll be out of there in an hour, as good as new.”

Little did I know… four hours later, with dilated eyes and an achy, gritty eyeball, I actually went into my office to try and work. I quickly realized that a) you cannot read a computer screen when you are dilated, b) you cannot focus on sales calls when your eyeball is aching, and c) you cannot focus on working when you are scared and worried. I called my husband and went home.

I spent the rest of the day in my dark bedroom. My eyes hurt and I had to put globs of ointment in them. I didn’t want to tell my kids (age 9 and 11 at the time) that I had an injection in my eyeball. Imagine, being a kid who hates his/her vaccinations knowing that their mom had a needle poked in her eye! That’s the stuff horror films are made of… So I just told them that I wasn’t feeling very good and had a treatment to help my eye. That was a good enough answer for them.

I used the word ‘treatment’ every time after that. My kids knew I would be in bed after a ‘treatment’, it became routine.

Continue reading “The Other Shoe, My Journey: Part 2 by Cathy Meggs”