macular degeneration, macular, diagnosis Newly Diagnosed – My Macular Degeneration Journey/Journal

Sue’s Toolbox Update 2023

Sue wrote most of this, of course. My comments are in [ ]. When you see any text that is a different color or underlined (varies by the device you’re using), you can choose it and go to a page with more information. It’s called a link.


Hi! Lin asked me to update my “toolbox” page. It has been three years so it might not be a bad idea. [Sue & some others call me by my ‘childhood name’ Lin, but I’m also Linda ::grin::]

Lighting!

I stand by most of what I said in 2020. Good lighting is essential. ​I was told to get LED lights when I started this journey. I have Ott brand lights and they work well. They also last forever. [You can often find the Ott lights on sale at the JOANN store.] The bulb in the light next to the bed has been going strong for seven years. The LED lighting is cool to the touch and reduces glare. If you have vision issues, you know how much “fun” glare can be! Not! Reducing glare is a real plus in lighting.

Magnify, Magnify, Magnify!

When you have advanced, age-related macular degeneration there are a few, simple rules: magnify, magnify, magnify!

I remember walking home from elementary school to find my grandfather trying to read the newspaper with a handheld magnifying glass. Same thing with my father several decades later. However, these days, it is not your father’s magnification any longer!

My workhorse is my closed-circuit TV magnifier (CCTV; also called video magnifier). They are expensive, but for me, they are indispensable. I take notes, pay bills, sort out my taxes, everything on that machine.

My CCTV is a portable model from Low Vision International. It has a sliding tray and a camera I can flip to view presentations and people across the room. I got the model you can hook up to a computer, but I have not used that feature yet. [Where to find these devices and other low vision aids? Check my section at the end ‘Finding Help to Create YOUR Toolbox!’]

Computer

And speaking of computers, my iMac is also an essential tool in my toolbox. I learned on a Mac, so that is my platform of choice. While Macs are relatively expensive compared to other brands on the market, they also come with a magnification feature built in. [Great resource for learning about using a Mac from Perkins School for the Blind ‘Getting Started on the Mac for Users with Low Vision.’]

This is as opposed to PCs that need you to add a magnification app. My magnification app for a PC I use is ZoomText. ZoomText not only magnifies, it also gives you voice over. Voice over is a “drive-me-crazy” feature that reads what you have put the cursor on and what you are typing. Right now voice over is enough to drive me insane, but it may be very helpful in the future. Either way, ZoomText is not free but is affordable. [Her reference to ‘voice over’ is not the same as Apple’s VoiceOver feature.]

iPad

I am typing this on my iPad. I purchase the BIG iPad with a 12.9 inch screen and I love it. My iPad not only magnifies but holds a number of apps that help me with the little inconveniences of being visually impaired. When I need a professional reference book, I buy a hard copy but also request a pdf version. I am on record with several publishing houses and they are required by law to provide those to me. Disability does have some privileges. Once I download the pdf version into NaturalReader, my iPad reads to me and I follow along in the book. [Hadley has great ‘how to’ videos on using an iPad.]

I can also “read” books on my iPad. Since I am legally blind, I am qualified to use BARD. BARD is great! There are hundreds of thousands of audiobooks available for free. Love that word free. [BARD is just one resource available from the National Library Service program ‘That All May Read.’ For those who qualify, there’s also an easy-to-use audiobook player with cartridges you can get.]

I go in spurts and stops with my “reading” any more, but I watch TV on my iPad regularly. There are a number of broadcasting companies that offer free apps. While they regulate what you can access for free, they do let you access more if you have a cable company and register. I like watching Tv on my iPad because I can “magnify” the picture by shrinking the distance to the screen. Another thing you might be interested in is audio description. I watched ‘All Creatures Great and Small’ on PBS and the audio description was helpful and not intrusive.

Other Tools for Magnification

Two more things before I go: magnification and magnification. I have a handheld, electronic magnifier that is good for restaurant menus and the like and a pair of telescopic glasses. My telescopic glasses are MaxTV glasses. I have a friend now who likes to go to the movies. I wear my MaxTV glasses and the 3-D glasses at the same time. Avatar 2 was stunning. [Her MaxTV glasses are from Eschenbach, a company considered to be one of the best for such products. There are less expensive products you can find through sources such as Maxiaids or Independent Living Aids. I don’t recommend you try the least expensive, though. Read the reviews and definitely make sure that you can return them for free if they don’t work for you.]

So there you have Sue’s Toolbox, 2023 version. I will be the first to admit the price tags on those things can be a bit shocking. Just remember the three important points: magnification, magnification, magnification. The same results can be accomplished in other ways. Hope this helped!


Finding Help to Create YOUR Toolbox!

Low Vision Therapy

Linda: We recommend that since there are so many options for these and other low vision aids, some of which are expensive, it’s best to find a low vision therapist, low vision occupational therapist, or a vision rehabilitation program where specialists will listen to what you want and need to do but can’t and will help you find what works for you. There is no ‘one size fits all.’

We recommend that to find low vision therapy near you, start by going to the VisionAware site to ‘Directory of Services’ (bottom or side of the page depending on what device you’re using) where you’ll enter your zip code (US) or province (Canada). In the UK, there are 2 great groups who can help: The Macular Society and the RNIB. You want to look for non-profit organizations, universities, or government resources where they’re not profiting from the sales. You can of course ask your eye specialist for organizations/specialists near you.

Vocational Rehabilitation

In 2016 when Sue became legally blind from advanced dry AMD/geographic atrophy/GA, she contacted Pennsylvania’s Bureau of Blind and Vision Services/BBVS because she wanted to continue to work. You can read about that here: A Human Doing. They provided some of the low vision aids such as the magnifiers, telescopic glasses including MaxTV glasses, the CCTV, software ZoomText and NaturalReader, a basic iPad, and a white cane. They also provided her with some training on some of the devices. She also had what’s called Orientation & Mobility training to help her get around safely. She did pay a fee based on a sliding scale of income. Every state will be different.

You can find your state or province vocational rehabilitation resources through the link to VisionAware above. You can also ask your eye specialist about it.

More Resources

A good resource for products and technology is VisionAware which is a not-for-profit organization with the APH (American Printing House). Check out this section ‘Helpful Products and Technology for Living with Vision Loss.’

Magnifiers and telescopic glasses that she refers to are called ‘optical devices.’ Here’s a good article about them with examples ‘What Are Low Vision Optical Devices?’


New March 19th, 2023

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 questions do I need to have answered by my eye specialist?

Question: What questions do I need to have answered by my eye specialist?

Hopefully as you have been learning more about your diagnosis, you’ve been writing down any questions you have. Make sure you take that list with you to your next appointment.

  1. You need to have a firm diagnosis. Age-related Macular Degeneration (AMD) is not the only type of macular degeneration. It is most common in those 50 and older. For someone under that age, there is Myopic Macular Degeneration (MMD; any age) and forms of Juvenile MD.

2. If it is AMD, you need to know what stage each eye is in. You can have dry or wet in both eyes, dry in one eye and wet in the other, or AMD in only one eye. With that information you can make informed decisions about what might help you, what treatment(s) is available, etc.

Here is a complete list of questions. https://www.macular.org/ten-questions-ask-your-doctor


go back to frequently asked questions


In the Beginning – Revisited 2018

Three years ago June my life changed. I did not know it then. I almost ignored the first sign of trouble. I had a blind spot in my left eye. How bad could it possibly be?

The reaction from the people at the hospital was a little disturbing. “Danger! Danger, Will Robinson!” Don’t ignore this! Don’t mess with this!

Hey, it’s a little blind spot, for crying out loud. I have another eye. Don’t make such a big deal of this.

If I had known then where I was heading? Not sure really. If I had been able to fast forward to the following January, I would have been devastated. I “lost” my second eye at the end of that month. I lost my ability to drive. I almost lost my career and I lost a good part of life as I knew it.

If I could have fast forwarded to now? The outlook would have been less bleak. I have been working hard on “me” recovery. I have been working hard on mastering my second career – something even a blind woman can do, psychotherapy. My disability is actually a benefit because no one can say I have not had losses and challenges!

I have also been working hard on getting back to things I love. I went skiing last year and am already scheming how to get again this year. I went rafting last weekend. I am seriously looking at a bus trip into New York City. Where there is a will, there is a way.

And what about next year or the year after? No clue. I am well aware my condition is progressing at an “average” rate; whatever the hell that means. I may be unable to do what I do now. Adapting may be harder and things I include in the definition of “me” may become impossible.

One thing I do know: adapt I will. It may not be great but it will be tolerable. Grow. Adapt. Change. Endure. Where there is a will, there is a way.

 

Written September 5th, 2018

What Can I Do to Slow the Progression of AMD?

There ARE things you can do to battle AMD. These are the recommendations backed by research. Since we don’t yet know what causes AMD in any individual, we don’t know which of these are more effective than others. We do know that there are many factors that influence the development and progression.

I have included a few self-help tips, too.

These are NOT in any order except for number 1.

Remain hopeful!! There is a lot in the pipeline–>http://www.retina-specialist.com/…/pipeline-update-whats-ex…

1. Don’t smoke. #4 and many others.

2. Risk of AMD is 50-70% genetic, the rest is age and lifestyle factors below. High genetic risk of AMD? Lifestyle factors such as nrs. 3, 4, 5, 6, 7, 11 are important. #4

3. Follow the Mediterranean diet, on the low carb side, esp. low sugar. #4 #1 and others

4. As part of the Mediterranean diet, eat lots of colorful veggies, esp green and leafy which have important carotenoids in them. #4 #1 and others

5. Omega-3 supplementation? If one’s diet is rich in healthy oils, some nuts, and fish such as wild caught salmon, some say supplementation is not necessary. #4 #1 and others

6. Moderate aerobic exercise. #1 and others

7. Drink enough water to stay hydrated. #1 and others

8. Reduce stress. Although it is common to have depression & anxiety when you get the diagnosis (and can recur as you do your research, please seek help if you cannot move past this–especially if you have thoughts of harming yourself. #3 #16

9. Wear sunglasses when outside: polarized, blue block. #9

10. Working on the computer – use built-in screen colors to reduce blue light. There’s no firm evidence that electronic devices give off enough blue light to harm our eyes. It does affect our sleep which is important. #17

11. Maintain overall good health including maintaining a normal BMI, normal blood pressure, normal cholesterol. #4 and others

12. Moderate AMD or wet AMD in one eye but not the other? Take AREDS2 with zinc if you know you are NOT zinc sensitive (genetic test). If you don’t know or know that you ARE zinc sensitive, AREDS2 with no zinc. #2

13. Use an Amsler Grid or other monitoring systems. #5 #7 #8

14. If by using aids in nr. 13 & symptoms indicate that dry converted to wet, get treated with anti-VEGF as soon as possible. The earlier the treatment, the better the prognosis. #6

15. Have your eyes examined regularly (every 6 months advised) by a retinal specialist who is an ophthalmologist who specializes in diseases of the retina; write down your questions and take them to your next visit. #12

16. TIP: If you have vision impairment, find a low vision specialist who is an optometrist who specializes in evaluating vision and recommending low vision aids. There are also organizations and specialists who can advise you as to how to adapt your home or workplace. #13

17. TIP: Make sure you have enough light and provide contrast since AMD decreases the ability to detect contrast and increases the need for light.

18. TIP: Don’t drive if you are not safe to do so, especially those who have blind spots. You may not realize that you HAVE blind spots that could block your ability to see other cars or things along the road. #10


References

#1 Mediterranean diet reduces risk for AMD–>http://www.aoa.org/news/clinical-eye-care/mediterranean-diet

# 2 AREDS/AREDS2: A Guide–>https://mymacularjournal.com/home/guide

#3 Can psychological stress cause vision loss?–>https://m.medicalxpress.com/…/2018-06-psychological-stress-…

#4 Macular Degeneration Epidemiology: Nature-Nurture, Lifestyle Factors, Genetic Risk, and Gene-Environment Interactions – The Weisenfeld Award Lecture–>https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5749242/

#5 ForeseeHome–>https://www.foreseehome.com/

#6 VIDEO: Registry shows early detection of wet AMD helps patients maintain better vision–>https://www.healio.com/…/video-registry-shows-early-detecti…

#7 KeepSight monitoring tools->http://internationalmacularandretinalfoundation.org/keepsi…/

#8 How to Use the Amsler Grid–>https://www.brightfocus.org/mac…/article/how-use-amsler-grid

#9 How to Choose Sunglasses–>http://www.webrn-maculardegeneration.com/sunglasses-and-mac…

#10 Mailbox or Child with self-test–https://mymacularjournal.com/home/mailbox-child

#11 Macular Degeneration: Frequently Asked Questions–>https://www.brightfocus.org/…/macular-frequently-asked-ques…

#12 Ten Questions to Ask Your Doctor about Macular Degeneration–>https://www.macular.org/ten-questions-ask-your-doctor

#13 How Low Vision Services Can Help You–>https://www.brightfocus.org/…/how-low-vision-services-can-h…

#14 Low Vision Rehabilitation and Low Vision Aids–>https://www.aao.org/…/diseas…/low-vision-aids-rehabilitation

#15 Reflecting on ‘grief’ after losing my vision–>http://www.blindintuition.com/reflecting-on-grief/

#16 Highlight: Is depression following the diagnosis of AMD normal?–>https://mymacularjournal.com/archives/5923

#17 Blue light hastens vision loss? ‘Not so fast,’ —>http://www.aoa.org/news/clinical-eye-care/blue-light-transforms-molecules-?refer=rss

What’s the Difference?

Hello. Spent a good part of yesterday working on getting my Wi-Fi connection back. My friend says she enlists the aid of the archangels and the saints. Supposedly Hilarion is the patron saint of technology. How a guy who, according to Wikipedia, spent his life wandering in the desert has anything to do with my Wi-Fi is beyond me. Of course, Hilarion sounds like hilarious and tech and I are a cosmic joke….

But before things went dark, Lin sent me a list of things the Facebook members thought would be of concern for those newly diagnosed. At the top of the list was the difference between dry and wet AMD.

I am going to tackle this sans references because, well, I think I got it. But, if I don’t, feel free to call me on it.

To begin with, both dry and wet AMD start out as dry. With the drusen accumulating between your retinal pigment epithelial cells and their food source, the RPEs start to die.

http://patient.info/health/age-related-macular-degeneration-leaflet

RPEs? Those are the servant cells to the photoreceptors. The photoreceptors are the cells that change light energy into chemical energy and then into electrical energy so your brain can see. Without their servant cells, photoreceptors died.

The death of cells and withering of a body part is called atrophy. In advanced dry AMD that is pretty much all that happens. RPEs die. Photoreceptors die and we loose part of our vision. Advanced dry AMD is called geographic atrophy (GA) because the pattern of living and dead retinal cells once looked to someone like oceans and continents on a map.

That is GA. It is generally a slow process. Vision loss is mild to moderate. In my inelegant terminology, your macula just sort of rots away. Yippee.

Now, that is not exactly what happens when you develop wet AMD. In wet AMD, the way I conceptualize it, your RPEs and photoreceptors send out messages begging for more supplies. Excuse me! We are dying here! The body responds by building more supply routes. These are blood vessels. However, these new vessels are substandard products and they leak. Those of us with wet AMD have eye bleeds.

Wet AMD is clinically called neovascular. Neo for new and vascular for blood vessels.

Bleeding in and about the retina causes cell death. You lose cells and vision quickly. One of the commandments of AMD is thou shalt not ignore an eye bleed! Wet AMD only happens in about 10% of us but it accounts for about 90% of the severe vision loss in AMD.

Now, treatments. The short answer for dry AMD is there are none. They are getting closer and I am hopefully but right now the answer is still none.

The AREDS/AREDS2 formula has been proven effective in reducing the rate of progression from dry to wet. Ask Lin. She is our expert. AREDS as a topic makes my head hurt. To my knowledge supplements do little to stop the slow progression of dry AMD. [Lin/Linda here: I’ve put some information about this at the end.]

The treatment for wet AMD is anti-VEG-F shots. VEG-F is the chemical messenger that calls for new blood vessels. Shut that guy up and there is less that can bleed. There are several different types of “eye shots”. Some work better for some people. Others work better for other people. Work with your doctors on that.

That is the difference between dry and wet AMD according to me. Hope it helped.

Written March 13th, 2018

For more information, here’s a good place to go: The Science of AMD.  I highly recommend the 2 videos on this page as well as the other information.


Lin/Linda: OK, more about AREDS/AREDS2.  The short answer is that they HAVE been shown to be effective in reducing the risk of wet AMD but only for those with intermediate dry AMD or advanced wet or dry AMD in one eye but not the other.  There is an issue about one’s genetic makeup in regard to taking the high dose of zinc in the original formulation (80mg).  For some people with a specific genetic marker, taking that much zinc can cause one’s AMD to progress FASTER to wet than those without that marker.  More about this at AREDS/AREDS2: A Guide where you can get more about the short answer, a link to a page where there’s “If you have…” which will tell you if the AREDS/AREDS2 supplements have been studied or not for the stage of your eyes & whether they’ve helped, and a link to 6 pages with details about the research that produced these supplements.]

Continue reading “What’s the Difference?”

Keep an Open Mind

Hi! Looking for information on coping with vision loss I found an article that covered something called the Coping with Vision Loss Study. It was covered on the VisionAware.org site.

The study was a small one (n=163) but it had a noble goal: to document the process of coping with vision loss. The information came from people who had gone through the process of vision loss. 45% had macular degeneration.

The study determined the most prevalent emotional reaction to the diagnosis of a condition that would cause vision loss was anxiety. Personally I do not need to ever have panic attacks like the ones I had ever again!

Even though anxiety was a major concern for the greatest number of people, it does not mean other, emotional problems were not present. A fair number of respondents were found to be dealing with moderate to severe depression.

Of course, since the study was about actually coping with vision loss, the emphasis was on factors and strategies for getting by and avoiding these adverse, emotional reactions. The study reported respondents had a variety of suggestions for doing this. These suggestions included seeking out the most competent specialists available as well as getting a second or even a third opinion, following doctors’ directions and connecting with others who have personal experience with vision loss.

These suggestions from the study respondents centered on personal responsibility and becoming your own, best advocate (as opposed to your own, worst enemy!) Be proactive about your life and your condition. Become knowledgeable about the condition. Get your questions answered. Monitor your own vision loss and seek out training so you can learn new skills to increase your independence.

Building support networks was another idea endorsed by the respondents. The respondents specifically mentioned family, friends, specialists and helpful community resources.

Community agencies were also listed as very important. Many agencies for the visually impaired can be helpful in finding support and educational resources as well as help you find the appropriate assistive technology.

Technology does not seem as appealing to the older generations as it does to younger folks. Yet respondents encouraged those who are new diagnosed to embrace the technology that is available. Competent use of iPads and magnifiers can significant improvement the quality of life for the visually impaired.

The article mentions a great many things we have talked about. It reviews the importance of proper lighting and contrast, for example. Finding someone who can help you with these sorts of things is important.

The list of recommendations from the study authors veers off into some things that are more personal and possibly even more essential for adjustment. The list includes things like being patient and gentle with yourself. Adaptation is not an overnight process, often grieving the loss is necessary before moving on. Take time to do so, but try not to get stuck in your grief.

I paint my pigheadedness as positive and call it persistence or fortitude. However, stubbornness can also be a bad thing when it keeps you from experimenting with technology or other strategies for living. The study suggested keeping an open mind and doing what is effective.

Which brings us to the last one I want to mention: there is more than one way to skin a cat (I reiterate: where did that saying come from? Did our ancestors spend that much time hanging out and trying various ways to skin cats? Yuck.) Find new ways to get things done. The idea the only right way of doing things is how I was taught at my father’s knee does no longer apply. Learn to be flexible and do what works.

There are other things that were discovered by the study, but those are the highlights as I saw them. Hope it was helpful!

Written Feb. 4th, 2018

Continue reading “Keep an Open Mind”

My Advice to Those Newly Diagnosed

Hi! Greetings from Chaos. I need to just sit and chill for a while and since I am not good at doing nothing, I guess I can write a page.

Crazy time! I not only skied Wednesday, I also went to a preschooler’s birthday party on Saturday and a gospel concert today. (Passing on a little bit of good stuff: go onto YouTube and search Sister Rosetta Tharpe “Didn’t It Rain”. The gospel roots of rock and roll. Learned something today!)

Lin said a topic the Facebook group is going to discuss is how to handle “all that bad news” of vision loss. I thought how I would approach that and did some research, but decided to approach the topic from my own perspective first. Then from the perspective of the professionals. And get ready, because I am going to be the naysayer.

What am I talking about? Oh, just what I have been saying for a while now. Specifically this: vision loss is no picnic but it is not as bad as you think it will be. What you are listening to is your fear talking. Stop listening to it!

As I have said before, I was initially told I was going ‘blind’, but I am not. I am losing my central vision, not all my sight. I may be ‘legally blind’ but I do not live in darkness. Huge difference!

The second thing about dry AMD is it is slow. It has been two years, guys, and I am still functional. Remember the commercials about waiting for the ketchup to leave the bottle? That is what it is like. If you have dry AMD, you will not be blind by next Tuesday.  [Lin/Linda here: dry AMD can turn to wet AMD in 10% of those with the disease.  Please make sure you check your vision regularly with an Amsler Grid or another way as recommended by your retinal specialist.]

Bringing me to my third point. A slow-go process like dry AMD leaves you plenty of time to adapt. You will not have to learn how to function as a ‘blind’ person overnight. There will be weeks and months and – yes – years until you will be significantly impaired. There is more than enough time to get yourself adjusted.

What have I given up? Driving. That is pretty much it. Oh, and a lot of reading. I used to read mystery novels. Now I listen to them. A couple of pages to be read can be read with the help of a magnifier.

Don’t panic

What would my advice be to those with a new diagnosis? Don’t panic would be the first thing. You will grieve, of course, but don’t panic. The life changes may be not be as significant as you think.

Take care of your physical health

Beyond that? Advice I would give everyone everywhere. Take care of your physical health. I stay sane by being fit and strong enough to be active in life. I can walk down the road to catch a ride on the street corner if need be. I can carry all my own ‘luggage’ for the day. CCTV, briefcase, lunch, gym clothes all go out with me in the morning. And who is lugging all this stuff? Yep, me. All by my lonesome.

Foster social relationships

I have the best group of people supporting me that you have ever met. People want to keep me involved; bless them. People actually text me and ask if I am ‘good’. They invite me to go along. Get out there. Foster the right attitude. You will meet the best people in the world, too.

Don’t be afraid to do things differently

And lastly, don’t be afraid to do things differently. Learn how to use a CCTV. Apply for BARD and listen to you books. Don’t be so pig-headed and ask for help, for crying out loud!  Lots of problems happen not because of low vision but because we refuse to try a different way.

There it is. Me telling you it is not all the bad news you think it is. Believe me. Revile me. Put me on a pedestal as someone who does amazing things you could never do. But in another few years, when you are functioning just fine as a VIP?  Remember who told you it is going to be okay.

Written 2/21/2018 Continue reading “My Advice to Those Newly Diagnosed”

I Tried My Best

I was raised to be responsible. I am responsible. I go to work and the job gets done. I have done the job between bouts of vomiting, with fevers and with migraines.

I am responsible but I am not crazy.

OK. Maybe the word is not crazy. However, I am definitely not one for not using good judgment or not looking at the big picture. Now, this is especially true when it comes to my vision.

I was at a professional gathering on Friday. One person there asked me about the circumstances of my sight loss. This person had an eye bleed that had started on Tuesday! That is three, count them, three! days. I advised an immediate trip to an emergency room. I told this person his sight could be very much at risk but was told in turn he had other, important obligations to attend to and he would, essentially, get around to it later.

I tried one more time and was again rebuffed. Are we truly our brother’s keeper? I wanted to call 911 and get this person to the hospital. That would not have been appreciated, but would he have appreciated my efforts if I had saved his sight? If he gets to a doctor sometime next week and gets told he has done irreparable damage to his vision will he appreciate I tried? Will he wish he had listened?

I assume our readers have more common sense, but since assuming can make an ‘ass of u and me’, I am going to spell it out. Never, as in NEVER, ignore an eye bleed. Mary Lowth wrote about vitreous hemorrhages for Patient. She stated vitreous hemorrhages are one of the most common causes of sudden, painless vision loss. Vision can be totally obscured by blood in the vitreous. Even if nothing serious is wrong that caused the bleed to begin with, you can be left with floaters. Not to mention blood is cleared from the vitreous at the rate of only 1% a day. That is over three months of impaired vision!

There is a whole list of things that can be horribly wrong to cause bleeding in the eye. Because I have dry AMD and have been warned about the potential of developing wet AMD, a bleed due to neovascularization was the first thing I thought about. There is also diabetic retinopathy and posterior vitreous detachment. PVD can be associated with a tear in the retina. None of these are problems to take lightly. [Lin/Linda: if you ever see what looks like a curtain drawing over your visual field or part of your visual field is obstructed, that IS an emergency which requires IMMEDIATE attention because it can mean that you do have a retinal tear. Most PVDs are accompanied by lots of floaters & sometimes flashes of light that are more noticeable at night (that’s the vitreous tugging at the retina. If in doubt, call your doctor.]

Lowth stated “retinal detachment must be excluded urgently”. In other words, should you have a bleed, run, don’t walk to the doctor and make sure your retina is still where it is supposed to be. Waiting three days is not an option.

Some of you are also sadly aware that bleeding can cause scarring and even more significant vision loss. Bleeds should be diagnosed and controlled as quickly as possible.

So, there you have it, some people believe they have more important things to do. They believe satisfying responsibilities is more important than taking care of their eye health. These people are wrong. If you even think you have an eye bleed, get to your doctor.

As for this person yesterday, I tried my best. Matthew 10:14 [“And if anyone will not receive you or listen to your words, shake off the dust from your feet when you leave that house or town.”]

written December 3rd, 2017 Continue reading “I Tried My Best”

Sue’s Best Pages – Part 1

If you are new to our website, you might have looked at the LONG list of Sue’s pages and felt overwhelmed.   I hope this series of “Sue’s Best Pages” will help you to navigate through some of them.  We hope you will eventually read them all.

Spoiler Alert – why should you read these pages?

After a year of learning how to deal with her visual impairment both physically and emotionally, Sue has a rather ‘normal for her’ life: At age 64 and with advanced AMD geographic atrophy, she works several jobs, attends regular exercise classes, rides her bike safely, travels, walks her dog, kayaks, attends social events with her friends.   We are not suggesting that reading her journal will ensure you the same results but we hope that Sue’s Journal of Her Journey will be educational and inspirational.

For the newly diagnosed
  • You need to start In The Beginning.  Follow the sequence of pages with the links that are at the bottom of each page.  The first 13 were written in the early days of this journal.
  • Page 13 “A Human Doing” is where Sue starts to talk about her experiences with Pennsylvania’s Office of Vocational Rehabilitation’s Bureau of Blindness and Visual Services.  Because she wanted to continue to work, they were instrumental in getting her the assistive devices and training she needed to do that.
  • Of course, we hope you continue to read from there.  If not, please continue with the next section.
Pages highly recommended by our readers

We ask readers to rate the pages.  I’ve taken the ratings and comments to select these pages.

How She Does What She Does

Sue was 62 when her vision deteriorated so quickly that she had to stop working and driving. She could have started early retirement but she is not the ‘retiring’ type. ::smile:: She contacted Pennsylvania’s Office of Vocational Rehabilitation’s (OVR) Bureau of Blindness and Visual Services (BBVS).  The services she received included low vision, technology, orientation & mobility and rehabilitation.   Counselors for each of these services came to her home and workplace to deliver assistive technology, software and training. There was a one-time co-pay based on income. Some people pay nothing. Sue paid a small fraction of the true cost of the services, software and devices.

166.  A Day in the Life which covers the time she is not working.

288. A Day in the Life: Work Day

Next:  Part 2 Dealing with the Emotional Reaction to Vision Loss

Home

One Foot in Front of the Other

We recently had a reader ask how it is possible to maintain hope, faith and optimism, etc. when “everything” is slipping away. She stated she does not want this disease because she had watched it “destroy” others. Her friends do not want to associate with her because of the “doom” she is facing.

Oh, my…where to start. First of all, I guess I need to say “I’m with you! I don’t want the damn thing either.” But wanting it or not wanting it really does not make a bit of difference. We do not get to make decisions like that in our lives. We only get to accept (or reject, but if you fight reality, I can practically guarantee you will waste a whole lot of energy and in the end, still lose. To paraphrase “I fight reality, reality always wins!”). We also can find ways of coping.

That appears to be a magic word: cope. This is not a fatal disease. If you are still breathing and conscious, you are capable of dealing with things and trying to make them better. Your hope is in every breath you take. Breath.

Remember one of my favorite people whom I never met, Viktor Frankl, said “the last freedom left to any man is determining how he will react to his circumstances.” This disease will not destroy us. It may take things from us, but not destroy us. We destroy ourselves through our reactions to it.

Our reader may not realize it, but she IS coping. She reached out to this website. She has sought professional help and she is involved with the state services for the visually handicapped. She is doing what she can do.

We don’t have to like having AMD and losing sight. We don’t have to be happy about it. We just have to keep moving. I mentioned this before but another one of my favorite, never met people, Winston Churchill, said something like “when you are going through Hell, keep going!” It is in pouting and denying reality – in stopping in the middle of Hell – that we are destroyed.

To address the part about being hopeful, optimistic, etc, a bit more, there are times all of those pretty thoughts are going to desert us. Times there seems – as in appearances and impressions – there is no hope. Those are the times we simply put one foot in front of the other. Determine what is next and do it.

I have been told I am “in love” with DBT. I am, for the simple reason it works. Mindfulness and staying in the moment work.

For example, the Beastie Baby has been diagnosed with lung cancer, but right now she is sleeping peacefully on the floor next to me. Right now, life is good. We will take one day at a time, one hour, one moment if need be. We will not grieve (much) and ruin life when things are good. Lesson: stay in the moment. Deal with the now. By dealing with each moment as it comes, we can handle a scary future. Buying future grief and hardship is a bad investment.

I could address the absolutes – always, never, everything – but I won’t. Not much, at any rate. We just need to remember few things in life are truly that black and white, that cut and dry. Every dark cloud has a silver lining and every silver cloud has some dark inside.

This has been a little jumbled, but that, after all, is my mind. I guess in summary, what I want to say is:

Accept this is happening, Recognize you are not powerless, we all have choices we can make.

Understand if we take care of each moment as it comes, the future will take care of itself. Don’t get ahead of yourself.

We don’t need to be hopeful or optimistic all of the time (even though there is reason for hope). If you cannot muster any faith in your future, just put one foot in front of the other and move. You will be surprised where you end up.

Continue reading “One Foot in Front of the Other”

One Good Eye

Just heard from a reader who said family and friends made her feel guilty about making a ‘fuss’ when she lost sight in her first eye. After all, she was older and you need to expect these things. Also it was ‘only’ one eye. She had two; did she not? She should have been happy she had one good one! They did not think she should fear vision loss.

Good grief. Not sure what species these people are from but we humans have a pretty strong fear of vision loss. In fact WebMD published results of a survey that found vision loss is what Americans fear the most.

This is a consistent finding across varying racial and ethnic groups. We ALL fear going blind.

In fact, fear of loss of sight was the same or greater than fear of losing hearing, memory, speech or a limb. And what is so scary about loss of sight? Quality of life and loss of independence, of course. Having good vision can be seen as a key to one’s overall sense of well-being. Good vision is frequently seen as essential to overall health and daily functioning. Good vision is seen as basic to just about everything.

There are five – just five – basic fears according to Psychology Today and I can see sight loss as feeding into three of them. First is the fear of mutilation, the loss of a body part. I took a little poetic license with this one, equating loss of function with loss of the organ itself. Then there is loss of autonomy, pretty self-explanatory, and separation. Sensory loss can certainly lead to a lack of social interaction. Is it any wonder we get so upset about sight loss? It taps into three out of five primal fears!

Fear is not just for weaklings and sissies. Fear is a valuable emotion. It tells us something is wrong and we had better start paying attention. There is something that needs to be dealt with. It is not only necessary but perfectly acceptable to listen to your fears.

To address their first point, vision loss is not an inevitable part of aging. There are a number of vision changes that occur but it seems only one of the common ones is not considered a ‘disease’. This is presbyopia – literally ‘old eyes’ from the Greek – or farsightedness. Presbyopia can be fixed in one of two ways: corrective lenses or grow longer arms!?

The Washington Post article entitled Vision loss is a part of old age but it’s not inevitable then goes on to list the rest of the causes of vision loss in older folks: cataracts, glaucoma and retinal disease. Please note the word ‘disease’.

Disease is not a normal part of anything and yes, you get concerned, and, yes, you see a doctor.

Our reader still did have one eye left, but would you like a good obsession? Try wondering when you will lose function in the second eye! That should afford you untold hours of uninterrupted worry! Somewhere I read waiting for the second eye to go is one of the most stressful things about progressive eye disease. Don’t know where, though. I read quite a bit on the subject.

Take away points: sight loss is not inevitable. Most causes of sight loss in older folks are considered disease and there are treatments for most of them. Don’t let anyone but a retina expert tell you there is nothing wrong. Most importantly, although I did not say this earlier in this page, if there is a sudden onset of symptoms, act quickly and get to the doctor.

Continue reading “One Good Eye”

Will I Go Blind?

QUESTION: “Will I go blind?” is one of the most common and emotionally-charged questions asked when a person gets a diagnosis of any macular disease such as Age-Related Macular Degeneration, Stargardt’s Disease, Myopic Macular Degeneration (and others) that can damage central vision.

The short answer is no.

Having AMD or any form of macular degeneration affects one’s central vision, but peripheral vision is spared. More details below.

Central Vision Loss is NOT Inevitable!

You can find what the risk of having a vision impairment or vision loss: I have AMD. What’s my chance of having vision loss?

With early or intermediate dry AMD, the chance of progressing to a stage where vision loss can occur (wet or geographic atrophy) is 10-15%!

That means that MOST PEOPLE do NOT have vision loss.

Blind? Vision Impairment?

Many people use the word ‘blind’ to mean any vision loss, but we try NOT to use that word for macular degeneration. Instead, some people will have a visual impairment or become legally blind, but not everyone.

Terminology

This is just a partial list of terms.

    • Total blindness refers to an inability to see anything with either eye.
    • Legal blindness is a level of vision loss that has been legally defined to determine eligibility for benefits. The clinical diagnosis refers to a central visual acuity of 20/200 or less in the better eye with the best possible correction, and/or a visual field of 20 degrees or less. Often, people who are diagnosed with legal blindness still have some usable vision.
    • Vision loss refers to individuals who have trouble seeing, even when wearing glasses or contact lenses, as well as to individuals who are blind or unable to see at all.
    • Visual impairment is often defined clinically as a visual acuity of 20/70 or worse in the better eye with best correction, or a total field loss of 140 degrees. Additional factors influencing visual impairment might be contrast sensitivity, light sensitivity, glare sensitivity, and light/dark adaptation.

 


GO BACK TO FREQUENTLY ASKED QUESTIONS


 

BIG News!

Woke up with a start at 2 am last night. Probably several things.

First thing that happened was a call from one of my contracts. She had called my third place of employment to schedule an evaluation and was told I did not work there anymore!

News to me! Now, I don’t get there a lot but the plan was for me to go and do a case or two when called. Maybe something like once every six weeks or so. I was never told I was being fired!

Of course it turns out someone got something wrong but it did get me to thinking. Once again, how does one graciously bow out or – hopefully equally graciously – be shown the door? Inquiring minds.

The second thing that has me a little anxious is my big ‘field trip’ tomorrow. I am going to do some sightseeing on Manhattan with an acquaintance from school. First time that far away from home without my husband since my sight loss. I know it can be done, but it is still a little scary.

Third thing: I saw Regillo yesterday. My eyes are getting worse slowly. (I am not so sure about the slowly part!) He confirmed scotomata (aka blind spots) get darker but did not necessarily say they go black. He said that he would not expect a central vision loss to cover 60 degrees of arc. That wide a loss would be ‘extreme’. Those two answers at least get us slightly closer to settling two of my burning questions from this Spring.

The big news, though, is he wants to try me on lampalizumab next winter. It appears the phase 3 clinicals are going to wind down by the end of the year and phase 4 trials will be starting.

People, the numbers of subjects in phase 4 trials is BIG. HUGE! Phase 4 trials take place after the FDA approved the marketing of a new drug. The drug is made available to the public through local physicians. They look for effects and side effects in diverse populations.

What this means for you is simply this: the first actual TREATMENT for geographic atrophy may only be six months away! This is the first breakthrough!

Lampalizumab is an injectible drug. It has been proven to slow the progression of geographic atrophy and to “reduce the area of geographic atrophy” by 20%. Dosing occurs monthly or every six weeks.

Will I do it? Probably. I really believe stem cell replacement of RPEs is the way for me to go, but it is taking forever and I don’t have time for forever. Lampalizumab can be administered locally and would avoid lots of trips to Philly. I don’t like the idea of intravenous injections but I don’t like the idea of a vitrectomy either! A 20% decrease in disease progression might win me enough time (and macula!) to have a more successful intervention later.

If you have dry AMD and geographic atrophy, it might be worth your while to broach the subject of lampalizumab with your retinologist. Let him know you are interested. This could just be the start of something big for all of us.?

Continue reading “BIG News!”

Not Your Parents’ AMD

3 pm Monday and so far it is a good day. The pool guy is working on my new liner. The funny thingee on my tummy is a normal, benign growth and the transportation company got new vans with fancy logos painted on them. No more confusion with two dozen, white vans. Life is looking up!

Lin told me there was a conversation thread in the Facebook group about parents who struggled with AMD. People remember what their mothers and fathers went through and they are determined not to become like them.

I am reasonably sure my father’s vision problems were AMD. The more I think about it his father’s vision problems may have been AMD. I remember both of them using a handheld lens to read the newspaper as well as the really strange interpretations Daddy would have when it came to TV shows. I have no idea what HE was watching but it was not the same thing I was watching!

I have said it a couple of dozen times and I will say it again: this is the best time in the history of the human race to be losing our sight. Absolutely the best. You may not realize it. You may remember what you saw and think we are doomed to go there too but we are not. We really are not.

I tried a handheld magnifier for a couple of weeks. Not doing that again. They are very inefficient. I have my CCTV, my handheld reader and my iPad which can go in the Justand.

[Lin:Linda: To see what Sue uses on a daily basis, check out these pages: A Day in the Life and A Day in the Life:Work Day.]

I can get newspapers on my phone and books from BARD (there are other sources, too, as well as magazines which are available).  I’m able to take a picture of pretty much any text I want and my KNFB Reader will read it to me. The zoom feature on my iPad will allow me to read email and research pretty efficiently. ZoomText allows me to work. (refer to the “Day in the Life” pages above)

If I want to look at something a little distance away I can use my max TV glasses or my monocular. Not too bad.

Depending upon when Lin publishes this page, you either have or will be hearing about audio description services (coming soon!). If my father had had those for the TV we would have been “on the same page” a lot more than we were when we watched programs together. Audio description can also allow you to go to the movies and live theater and actually know what is going on.

Do I want to be losing my sight? Hell, no! This is not a walk in the park but it is not what Daddy endured either. Just the same he made it into his mid 80s and managed to take care of himself until other issues brought him down. If he could do it without all of the toys, I can do it.  [Lin/Linda: My dad had geographic atrophy & took care of my mother who had Alzheimer’s using several different handheld magnifiers & a few other low vision aids.]

Yet another reason to be optimistic is all of the exciting research happening. We are poised for a veritable explosion of treatments. Not cures, mind you, but treatments. Thirty years ago there was nothing.

[Lin/Linda: To see what’s in the research pipeline, click here.]

What can you do? Be willing. Use what has been provided. If you put that iPad your son gave you in the drawer you have absolutely no grounds for complains. Bluntly put? Your extra suffering will be your own damn fault.

What else? Volunteer. Sign up for clinical trials. Join support groups. Share your knowledge and skills.

Life – and this vision loss bit included – is the craziest thing you will ever experience and none of us get out alive. Make the most of it while you can.

Continue reading “Not Your Parents’ AMD”

Uneventful Trip

Just came back from Walmart. When I checked the early days page Lin had published for today it was my first trip to Walmart as a visually impaired person. I would say what a coincidence but this girl has been known to ‘live’ at Walmart so it really was not.

Anyway today the trip to Walmart was….totally uneventful. Fine. No issues. I tell you this because in my cockeyed optImist (yes, there’s an upper case “I” in the middle), Pollyanna way I want to reinforce the concept there is hope. Yes, I have geographic atrophy with no scarring – just ‘no’ macular; my ‘divot’ just keeps getting bigger. And yes, I have no clue what it is like to be you in your situation.

However, for the great majority of us things can be OK with adaptations and the learning of skills.

I cannot drive myself to the store. My husband now parks near a cart corral. He makes sure I know we are down the line from the garden center or bank sign or whatever and then he turns me loose. I generally find my way back without incident. Do I wander around lost sometimes? Sure do. It is a matter of my not paying attention in the first place. I did that when I was fully sighted.

Absent mindedness is not a side effect of vision loss!

In the store I am using eccentric viewing…a lot. Although I carry my toys just in case, I seldom get them out. I have learned to use my peripheral vision and I am pretty good at finding things I need…and things I don’t need but really want. Got (another) cute pair of yoga pants and (another) cute scarf today.

There are times I have to be more careful and really LOOK. For example, I almost picked up hot sausage instead of mild today. If there are several varieties of something and the packaging is very similar you need to double-check. When you don’t drive often things don’t get returned. I have a chili potpie in the freezer that I could have sworn was beef. Been there for weeks. (Perhaps this is an opportunity to expand my horizons?)

I use a lot of habit learning. The credit card machine is now easy. That is habit training. I pretty much know what comes up next. Press the same buttons all of the time.

And if I don’t know or cannot see it, I ask. Sometimes I admit I am visually impaired. Those are generally the times when I know a full sighted person would have been able to figure it out and I don’t want to look like an idiot. Other times I just don’t bother to ask.

Nobody thinks the less of you if you cannot find something like the honey. Fully sighted people ask questions like that, too!

So there you go. One more page about my uneventful life. Stay tuned. Next I might write about watching paint dry!

Written May 28th, 2017

Continue reading “Uneventful Trip”

Hindsight is 20/20

Good evening! How are you all?

Lin has noticed I seem to have written soooo many pages they are overwhelming and confusing some people. She feels this is particularly true for some of the newbies who probably feel like they have walked in on the (boring and confusing) middle of a movie. [Lin/Linda: to be clear, those are Sue’s words! ::grin::]

Understood. Some of you are back in the shock and doom phrase and I am talking about getting newspapers on your phones and other trivial matters. Who wants to hear about that sort of thing while your world is unraveling?

In the interest of pointing you towards something that might actually be helpful, Lin is republishing some earlier pages for your attention and discussion. And I – always helpful – am going to add to the confusion by writing another page!?

This page will have a catchy title thanks to Lin, but right now I am going to call it “What I know now that I wish I had known a year and a half ago”.

First, you are not going everything black and dark blind.

It is not good but neither is it quite that bad. You are losing central vision. Things will not be good for anywhere from about 15 to 60 degrees of arc. Since normal visual fields are 170 or so degrees of arc, you have the potential to lose about a third of your vision. Not anything to cheer about but better than 100%.

You may not be doomed to progress to end stage AMD.

About 15% of patients become ‘wet’. About 15% progress to geographic atrophy. That means you – starting out with drusen and a diagnosis of early AMD – have a 85% chance of dodging the proverbial bullet for end stage AMD. You may very well not get as bad as I am and a year and a half after my second eye went to hell, I am still functional. [Lin/Linda: a person can have both wet AMD and geographic atrophy in the same eye.  I don’t what that does to the %, if anything.]

You did not cause this.

Yes, AMD is caused but it was not caused by anything you did or did not do. The causes are in your genes. This is a heritable disease. There are dozens if not hundreds of genes that are being investigated to try to figure out how AMD is created. It appears AMD may just be the result of a genetic ‘perfect storm’ and there is no one to blame.

There may come a time you are seeing things.

I saw some odd stuff when my brain was working overtime to assign meaning to the faulty images my eyes were sending it. You are not psychotic (I hope you are not psychotic). This is Charles Bonnet Syndrome. When your brain gives up trying to assign meaning to false signals you will stop seeing weird ‘stuff’. In the meantime, enjoy the fantasy.

Point number last: There is an amazing amount of hope for treatment and eventually a cure for AMD.

Research is going on everyday. New discoveries are announced with regularity. The medical community is hot on the trail of something that will arrest the progression and may even reverse this disease. All we have to do is hold on.

OK. Those were my biggie when I first lost my second eye. What are you worried about? Please share and we can discuss it. Continue reading “Hindsight is 20/20”

My Uneventful Life

Greetings from my busy but essentially uneventful life. In real-time it has been about five days since I have written anything. Nothing is happening. No one has peeved me off. Nothing in the research has reached out to ‘grab’ me. Nothing much going on.

Thinking about needing to write something, I started looking at what I have been doing. I am still working pretty much full-time. I am still exercising, walking the Beastie Baby – albeit a lot slower as she is closing in on 14! – and avoiding housework until it approaches critical mass (or critical mess, if you prefer!) I am also riding my bike a little bit and I have been ‘reading’ recent offerings from two of my favorite authors.

Looking at my mental inventory I realized I have been making gains on being myself. I have been getting back to being me!

My first year or so was a scramble. I was working with people to put all of my supports in place and learning to use same. I popped the big pieces back in place first. I got back to work and found a way to continue my exercise. I also added a new piece or two. For example, I started writing these pages and Lin put together the website and the Facebook group. Now it appears I might be putting in some of the smaller pieces, navigating in town on my bike and indulging in murder mysteries.

The research Londoners’ Experiences of Life-changing Injuries chronicles the thoughts and feelings of some who have experienced brain injury, but a lot of the thoughts would apply to the loss of any physical ability. Your self has, to some extent, been dismantled. Picking up the still usable pieces, adding the changes to those, and being alright with the picture created can be a challenge. Still, most people want to get back to a semblance of ‘normal’. They want to get back as close to being themselves as possible.

Totally possible? Probably not. Everything does not always go back together the same way. But that does not mean you should not try to get back to being as close to ‘normal’ as possible.

Right now I am adding back riding my bike and listening to Michael Connelly and John Sanford novels. What else might I add? Not sure yet. The Spring/Summer season is still young. Many summers I have taken day trips. Thinking about the logistics behind accomplishing one or two of those.

So there you are. Pretty basic life. Working, exercising, pedaling my bike around town and listening to mystery novels. Big deal? Actually, it kinda is.
P.S. Just finished The Crossing and The Escape Clause. Love Harry Bosch and Virgil Flowers!

April 23rd, 2017

Continue reading “My Uneventful Life”

One Year Anniversary: Part 2 My Myths

Just wrote the page on my ‘first birthday’ as a visually impaired person a few days ago in real time. Then this week I taught myths in DBT. My brain sort of put them together and I started to think about myths about the visually impaired.

There are all sorts of pages online about what fully sighted people think – sometimes totally incorrectly – about the visually impaired. But what did I think was going to happen to me? What are you thinking is going to happen to you?  Those are the important questions. Who cares what those pesky, fully-sighted people think about us??

When I first lost my second eye and had to take a leave of absence, I thought I would never work again. Did not happen.

I was out for about a month. Land speed record? Yeah. I told my blindness and visual services guy I was (and am!) a pain in the butt and he would be doing himself a favor to get me back in harness as soon as possible.

My first anniversary for being back to work will be something like late March. It might not last forever, but I have gotten at least a year’s reprieve. I am slowly transitioning into more ‘low vision friendly’ work and even when I cannot test anymore, I expect to work at least part-time.

I am not an anomaly! (OK, I will accept strange, different, quirky but not anomaly.) National Federation for the Blind reported that in 2014 approximately 40% of those with “significant vision loss” (don’t ask me exactly what that term means) were employed. The stats are not fantastic, but if you want to work, it is possible.

I also thought I was going to sit around the house bored to tears and depressed. I had my moments (several of them!) and expect to have more but in the big picture, I am just about as engaged as I was before my loss. This morning were my two, usual classes at the gym. Tomorrow is a hot yoga class. Last week I went to one job party and next week I am going to another. I have plans to go to a concert next month.

OK, so I am not getting out of town as much as I would hope but at least I am getting out of the house!

Those were my ‘biggies’ as myths. I also had a few other ones. Getting around would be impossible, for example.

Sometimes my transportation arrangements are worthy of Rube Goldberg, but somehow I get there.

Then there was I will be all alone. Nope. Crazy, but people volunteer and go out of their way to help. I have become part of at least one person’s master plan for getting into Heaven! Who would have thought that one?

So right now all those myths are not coming true. Grain of truth in every one? Of course, that is part of the definition of myth. But on the whole, not so bad and we continue to take things one day at a time.

So here are your discussion questions: what were your myths about being a visually impaired person? How much truth was in them? Continue reading “One Year Anniversary: Part 2 My Myths”

One Year Anniversary: Part 1 What I’ve Learned

First week of February, 2016 I started my life as a visually impaired individual. Those were not my finest hours. My left eye had been ‘gone’ for at least six months. Maybe longer. I still did not miss it all that much.

“In the land of the blind the one-eyed man is king.”  (Desiderius Erasmus Roterodamus).

I was able to do just fine with my right eye and never considered myself to be handicapped. I stood above that level. I was highly capable and doing just fine.

I also never considered my second eye could fail me virtually overnight. Still, believe it or not, it happened. I went from being a fully functional professional to someone who could not see to read a computer screen and who was having three and four panic attacks a night. Like I said, not my finest hours.

Fast forward to the first week of February, 2017. I write this a couple of weeks ahead of time and hope to Hades nothing falls apart until this gets published, but I want to tell you, on this the first birthday of my ‘new life’, I’m okay. (Unless all hell break loose again, in which case, all bets are off! In that case, please ignore this page ?)

A year ago, I had my doubts. Big doubts that life could ever be livable again. You might be there right now. You might be wondering where you will be in a year.

I stand here to tell you it is not the same, it is not perfect, but it is not as bad as you imagine it could be. Humans are highly adaptable creatures if they give themselves permission to be so.

Allow yourself to grow and you will surprise yourself. Promise.

What else have I learned in the past year? More than I EVER wanted to know about eyeballs and progressive, degenerative retina disease. It has become my ‘hot topic’. Get me started and I can clear out a room! Suddenly everyone else has something he needs urgently to do!

I have learned I am surrounded by some of the finest people in the known Universe.

That is both on and off planet?. People are incredibly kind and want nothing more than to help.

I have learned there are amazing devices and futuristic research out there.

Much of it is aimed at improving the functioning levels and the lives of us, the visually impaired. When I say this is the best time in history thus far to be going blind, I am not blowing sunshine up your skirt! It is ever so true. We live in amazing times.

Am I going to be able to function this well for ever? No. Progressive, degenerative disease here. I know it is eating away at things in there. I know one of these days I will have to quit work and become even more dependent on others. But see paragraph above. I do not believe I will be blind forever. I have serious hope and I believe that even if I go blind, I will see again.

So for now, 365 days down. One day at a time for however long it takes. Continue reading “One Year Anniversary: Part 1 What I’ve Learned”

My First 100 Days: Part 4 Now

Here we go, Forward to the Past, number last. 100 days give or take since everything went to hell with my vision. Am I where I want to be? Not by a long shot. Rolling back the clock to a time I had decent sight would be great. But then I would have to go through all the crap again so I think I will pass.

Where am I? Doing OK. Not great. Not awful but OK. I am healthy. I am taking care of myself physically. Important because as grandmother used to say, “if you don’t have your health…” I take my medication. After all, for its size, your eye has a very large number of blood vessels.

Even if they are not really sure if high blood pressure has an effect on AMD, I should take my blood pressure medication just in case.

I also have to stay healthy for the clinical trials. For example, I got bit by a tick the other week. For those of you not living in the Great Northeast, I need to say our ticks carry a nasty little thing called Lyme Disease. It is a chronic, debilitating infection. Chronic, debilitating infection equals no immunosuppressant equals no clinical trial. I was up to the walk-in clinic for prophylactic antibiotics so fast it would have made your head spin. Keep the option of trying for a cure open.

I exercise. Great thing exercise. It is the closest thing I know to a panacea. Good for what ails you mind and body.

Mind? No matter how many of you think I have lost my mind, things aren’t too bad in that department either. Not depressed and no – thank God! – panic attacks. I practice what I preach and try to keep the demons at bay. The future? If I have to go there, I go channeling Pollyanna, humming “My future’s so bright I gotta wear shades.” Better to be mindful of the present though.

Worrying about what might happen can screw up a perfectly good day.

I am working. Not always easy but I am trying to make it work. No one has yet had to “have a talk” with me so I think things are OK. I made people promise we would discuss my professional future honestly if things were not good.

Keeping busy doing something I like and making money. Score!

Friends? Yeah. Good friends being good supports. Husband driving Miss Susie and being a rock about it. Making better friends with people I only knew casually before. It is sort of strange but I think you might associated with a ‘better class’ of people when you have a handicap. The selfish, surly type run the other way. The ‘classy’ ones come to help.

I offer this synopsis not as a measuring stick but as a reason for hope. We all have our own journeys and we take them at our own paces. I am blessed to have been given many gifts and I may have made my journey thus far at a pace that some of you find a little daunting. That is not the point. This is not a race, it is a journey.

The point is: there is light at the end of the tunnel. You can get there. Things can get better.

Continue reading “My First 100 Days: Part 4 Now”