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”

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Why NOT Me?

I am working on my lesson plan on radical acceptance for DBT. In order to truly be able to tolerate distress and build a life worth living – all in DBT parlance, of course – we sometimes have to radically accept a situation we do not approve of and that causes us pain. [Lin/Linda: Click here for another of Sue’s pages about radical acceptance.]

Why radical acceptance? Things termed ‘radical’ effect fundamental nature and have far-reaching effects. Some changes and distressing occurrences threaten us at the core. In order to deal with them we need to accept them at the deepest levels as well. Thus, radical acceptance.

Think integrating a new identity as someone with low vision into your sense of self. Now THAT is pretty radical.

Radical acceptance not only teaches “it is what it is”, no changing reality. It also teaches “everything has a cause”. When I first read that, I bristled a bit. I do NOT feel I did anything to deserve having this eyesight. Not my fault. Then I decided I would need to research it a bit more (after all, I am supposed to teach this stuff!)

Turns out the idea behind everything has a cause is not about assigning blame. It is, instead, to quiet that chorus of voices saying how things should be and how life is not fair.

Only when we get over feeling the Universe is out to get us can we eliminate some of our distress.

The plain and simple fact of the matter is I was a pretty logical candidate for developing AMD. I am female, white and of a certain age. My father had AMD. My diet runs toward fatty foods and I have high blood pressure. After I took another look at the risk factors I have I had to admit “why me?” was not the proper question. The more appropriate question would be “why not me?” What would make me so special I could have all those risk factors and not develop the condition?

The third tenet in radical acceptance says life is worth living in spite of the pain. (I try to live a full life in spite of my ‘blurries’. I also end up with muscle aches to prove it. Somebody remind me to act my age….later.)

In fact, DBT says pain has some very positive purposes. (Now let’s not get too crazy here.)

Nietzsche really did say “that which does not kill us makes us stronger”. I wasn’t there but I take it on good faith. Jane Juza said in The Positive of Experiencing Pain that pain tends to make us appreciate the good in our lives and to seek out meaning and purpose. Frankl said the meaning and purpose in your life may be in how you endure with grace.

So, there you have it, a preview of my lesson on radical acceptance. Hope it made sense. Going to bed a little early now. I think my pain is telling me I played too hard. Information, another benefit of pain. Night! Continue reading “Why NOT Me?”

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Preventative Maintenance

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

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

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

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

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

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

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

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

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

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

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

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Weighty Matters

I am dense. In more ways than one, but the way I am talking about is good. I have a fair amount of lean tissue (read muscle) that weighs more than fat. That means that I don’t flip out when a body mass index calculator says I am overweight.

Truthfully, I am just over the line at a BMI of 25.1. A healthy weight is reflected in a BMI below 25.

But who cares? The fact of the matter is, if you are reading these pages you or someone you care about has age-related macular degeneration. And another fact of the matter is higher BMIs are associated with progression of AMD.

Obesity is associated with a higher risk than ‘just’ being overweight. However, being overweight increases your risk pretty significantly. Reading the data from 2003 and generated by research by Seddon, Cote, Davis and Rosner, I discovered the risk ratios for both group as compared to skinny people are over 2 to 1. That means chubby people progress to advanced AMD twice as often as their skinny cousins.

And, of course, there is more. ‘Apples’ not only have more problems with diabetes and heart disease, they also have twice as great a chance of developing advanced AMD. Belly fat appears to be nasty business in all sorts of ways.

Gives me a new perspective on Santa Claus. With that “bowl full of jelly” around his middle, do you think he has heart problems, type 2 diabetes and AMD? Somebody should talk to him (and Mrs. Claus!) before Rudolph has to become a seeing-eye reindeer!

So, you know the drill. If you are carrying a little extra weight, you have heard it all before. Now there is one more reason to shed those pounds. You may not care about those potential bogeymen they threaten you with (those would be heart attacks or diabetes for example) but what about your sight? I suspect you are losing that NOW as in, as we speak now. What would you do to slow that process down?

Seddon et al (same article as above) found a 25% reduction in rate of disease progression when patients engaged in vigorous activity three times per week. Sort of sounds like exercise might help.

Those of you who are paying attention may be trying to add up some facts about me here. I have been an exercise nut since I was 25. However, I have a rapidly progressing case of AMD at 63. Obviously working out did not help me….or did it?

I have no clue. Maybe it was my crappy genes were totally resistant to any positive intervention. Maybe I would have developed this stuff at 58 or 59 if I had not exercised. No way of knowing.

What I do know is I am zealous about the benefits of exercise. Want to improve your physical and mental health? Want to meet great people and have fun? Exercise. Oh, and it just might help to postpone your advanced AMD. Never know. Continue reading “Weighty Matters”

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I Have Macular Degeneration…Now What?

If you aren’t familiar with how to move around on our website pages, click here

Where can I quickly find information about AMD?

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

What other websites are helpful?

Here are some of our favorites:

  • Click here for a video that covers important information about AMD
  • Click here for a description of dry vs. wet AMD (we are not recommending any products in this article)
  • Click here for an article about depression after diagnosis (which is common)
  • Click here for some answers to common questions about depression after diagnosis
  • Click here for an article about how vision rehabilitation helps prevent long-term depression
  • Click here for a very comprehensive page about wet AMD
  • Click here for a very comprehensive page about dry AMD
  • Click here for an article about how fast AMD progresses
  • Click here for 10 questions to ask your doctor
  • Click here to find a support group
  • Click here to find out should I take the AREDS or AREDS2 supplements?
  • Click here read about the role of nutrition in AMD
  • Click here for eye healthy foods including a Healthy Vision Grocery List
  • Click here for a January 2017 scientific review article“Nutritional and Lifestyle Interventions for Age-Related Macular Degeneration: A Review”
  • Click here to find out what vision changes/symptoms to look for
  • Click here to find out about the people who can help you (what are the differences between the types of eye doctors, do I need to see a specialist, etc)
  • Click here for tips on how to make the most of the vision you have
  • Click here for a FAQ (Frequently Asked Questions) that answers a long list of questions such as ‘will resting help my eyes?’, ‘Can I see for myself if my retina or macula shows any signs of damage before I have symptoms?’, ‘why don’t new eye glasses help?’, ‘what is meant by degeneration?’, ‘is a macular hole the same as macular degeneration’, ‘I have had dry MD for years. Does this mean I’m going to get wet MD too?’, ‘No one else in my family has MD. Why did I get it?’, ‘can drusen be treated?’, ‘I have changes on the Amsler Grid, does this mean I have MD’, ‘I have Wet MD but my Doctor says there is nothing he can do or no treatment available. Why is this?’

Where can I do more research?

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

  • through Sue’s Journal Pages. Sue became visually impaired early in 2016.  She is a psychologist trained in Dialectic Behavior Therapy (DBT), a cognitive behavioral therapy, and she writes about how she is using it to help her cope with this vision loss.
  • on our Resource page where there are links to many sources of information such as what is AMD, what is Stargardt’s Disease, organizations and websites with useful information, support groups, videos, books & reading materials, where to find vision services, where to find financial help especially for injections, personal stories, the science stuff, clinical trials & research (and how you can become part of one,  online newsletters, symptoms, possible causes/contributing factors, treatments, coping, how to take care of yourself…and more!
  • and in the posts in News/Highlights blog

There are more ways to get information from our website

Search or select CategoryYou can actually do research ON OUR WEBSITE!  You can find things such as in which of Sue’s journal pages does she talk about depression, where can I get more information about sunglasses or vitamins, etc.  If you are using a computer, for example a laptop, you may have seen the search box plus words under Categories and words under Tags/Keywords on the right side of each page. If you use a tablet or smartphone & the screen isn’t wide enough, unfortunately you have to go all the way down to the end of each page to see these sections.

Do you want to know in which pages Sue talks about depression? You can type the word depression (you can also type multiple words) in the search box or select the word depression under Tags/Keywords and you’ll get all of her pages where she talks about it plus you will get any of the News/Highlights posts as well as any matches in the Resources/Links or News/Highlights pages, too. If you want to find everything on our site about sunglasses, you could type the word into the search box or look for the word under Tags/Keywords and select it.

Tags/KeywordsIf you want a broader range of pages & posts such as ‘Tips for living with low vision’, you’ll see that under Categories.

 

 

 

 

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

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Linda & her dog Chase
Linda & her dog Chase

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

 

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Highlight: What is Advanced Macular Degeneration?

About 10 years ago, my elderly father was diagnosed with dry AMD and then later we were told it was ‘advanced’ and that he had ‘geographic atrophy’.  At the time, I didn’t understand what that was.

Here’s an excellent article about what those terms really mean.  It’s on the great website WebRN: Macular Degeneration.  If you haven’t looked at it, I recommend that you do after you read this article.

Advanced AMD & Geographic Atrophy

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News: Smoking Makes Your Vision Poor Shows Research

April 11, 2016

Article from India:

With a surge in eye-related diseases in India, Ophthalmologist have said smoking is emerging as one of the major reasons behind vision-loss among patients. However, only 10-20 percent people are aware of it.

According to the doctors, several studies have shown that smoking increases the risk of age-related macular degeneration, cataract, glaucoma, diabetic retinopathy and dry eye syndrome.

Click here to read the entire article.

 

 

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