Hodge Podge

This may end up as another chatty, hodge podge affair. There is really nothing major happening and in the world of progressive eye disease nothing major happening is a good thing!

So, actually, I guess that is my first offering here. Those of you who have recently received your diagnosis or have had a crisis and are really distressed – it is not all drama and disease focus for the rest of your life.

You adjust and other things take center stage. That is not only normal but it is a good thing.

Second offering is something I picked up last month at the support group. When I said dry AMD is the base disease, they looked at me as if I had three heads. What I meant – and what they had not gleaned. Why won’t people do their research! Or minimally ask questions? – is that even though the shots have stopped the neovascularization, the growth of new blood vessel that lead to a bleed, you still have the underlying cause of the problem. The cause is regular, old, dry AMD.

This is why, even though you think the stuff we publish on dry AMD does not relate to you, it does.

Wet AMD is one type of end stage AMD and geographic atrophy is the other. Stopping the bleeding does not eliminate the underlying disease. It just eliminates the symptom.

Which brought me to another thought. I have never seen anything that says if an eye prevented from going wet will go to geographic atrophy. Hmmmmm…..

Nuts! More to worry about. Kaszubski et al in Geographic Atrophy and Choroidal Neovascularization in the Same Eye: A Review stated there are people who can have both forms at the same time. Geographic Atrophy generally happens first. (That part is bad news for me although I am under the impression that for me there is very little left to ‘save’ by building new blood vessels.)

To follow the question posed above, though, they also say there is some evidence anti-VEGF shots can increase the chances of GA development.

While that is bad news for you getting the shots it does NOT mean to stop your shots. No shot and you will bleed. Bleeds lead to scarring and certain vision loss now. GA is slow and lead to vision loss later. Given a choice, battle the bleeds and worry about the atrophy later.

End of lecture.

Other than that, in real time Memorial Day approaches and I am thinking summer. Although I know there is ‘no rushing city hall’ (to paraphrase another old chestnut), I started looking up Astellas and Robert Lanza again. Just to see what the dear boy is up to. I have been hoping to get to Philly and the clinical trials this summer. It would be perfect timing for me but I am not sure about the Astellas Institute of Regenerative Medicine (AIRM). They will need to give Wills the go ahead to start one of ‘my’ clinical trials before anything happens for me.

Astellas is gearing up for something, though. Something big. A couple of years back they bought OCATA for $379 million. Now they are on a hiring binge and are looking for a bigger location in or near Marlborough, Mass.

In the business articles I read Lanza purposely hyped the work they are doing on AMD. I am assuming that is still their big thrust. (That is even though AIRM is in a variety of areas of regenerative medicine and Lanza himself is intellectually all over the place, including developing a theory of the Universe!)

Anyway, seeing this big a build-up with lots of business chatter tells me something is going to happen. Just hope it is in the trial I have volunteered for. My eyes and I are not getting any younger! Continue reading “Hodge Podge”

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A Stuffed Black Dog

I am practicing my DBT skills on myself today. Today was the day I was supposed to get a new pool liner. Supposed to being the operative words.

I have spent several years trying to extend the life of the old liner with gorilla tape! That one was always a bit of a debacle. I picked an installer at random – and did not find out he had been driven out of business three times before that until I was having problems. (Note to self: research tradesmen!) When hurricane Ivan came along and pushed up the bottom of my pool, I was not able to get a lick of help from that guy. My pool bottom had lumps with wrinkles radiating in all directions. I was dreaming about GIANT spiders living in the pool!😱

But that is not why I am practicing my DBT. Today was supposed to be sunny and 80 °F. It is 56 and raining. My pool is drained and there will be no new liner for a week. Frustrated, but it is what it is. No controlling the weather.

Also, why ruin right now thinking about the swamp smells that might (face it, probably will) be coming off the pool until we get the new liner in? My fussing won’t make it smell like roses!

One of our readers/member of our Facebook group recently sent some comments about her first injection for wet AMD. When I read what she had written, I realized in some ways she had practiced DBT! Other ways she needed a little reminder to do so.

The reminder first: the days before her first injection our reader spent a lot of time worrying and fussing. After she had her shot she was sort of upset with herself because it had not been as bad as she had envisioned. She had wasted a lot of time being in a tizzy about it all!

Yep. My pool may not stink as much as I believe it will. The only way to find out is wait and see…and don’t waste time and energy worrying about it.

Reality dictated our reader had to have her shot. Otherwise there would be bigger problems. Reality says I am going to have a swamp in my backyard. No avoiding it. Might as well accept it will happen.

Both our reader and I know what caused our respective messes. She has ‘bad’ genes and my pool guy got a bum weather report. But even knowing what happened, the causes are not under our control. No sense fussing or saying it should not be happening. Better to practice ACCEPTS and get through it. [Lin/Linda: Click here for one of Sue’s pages on ACCEPTS.]

And you know what I loved? Our reader practiced a self-soothing skill through touch! She took a stuffed animal (a stuffed black dog) with her to help her through.

Another DBT skill she used (whether she knew it or not!) was effectiveness. That stuffed animal may not have been a ‘proper’ thing for a grown woman to have, but who cares? It did its job and helped our reader through. Remember effectiveness is all about doing what the situation calls for even if custom (or snobbery!) says it should not be done that way. [Lin/Linda: Click here for one of Sue’s pages on effectiveness.]

So, thanks to our reader for letting me use her comments in a teachable moment. As for me, no sense sitting around waiting for the pool to stink. I am off to Walmart. Continue reading “A Stuffed Black Dog”

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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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Always Learning More and More

Moving right along with the article I am reading (in Webvision’s Age-Related Macular Degeneration), I am finding a lot of new vocabulary and abbreviations. Have you heard of PEDs, for example? PEDs are not nylon footies. They are pigment epithelial detachments. They happen when a bunch of drusen join forces and push up the RPE layer of your eye. Since the RPEs are under the retina and need to be in contact with Bruch’s membrane in order to take care of the photoreceptors, having them jacked up is not a good thing.

There is more and more information suggesting Bruch’s membrane is not totally blameless in this whole debacle. I am not going to pretend to understand it but there is evidence structural and biochemical differences in Bruch’s membrane occur in those with AMD but not in people who do not have the disorder. It may not be all the fault of the RPEs.

Recently I have been seeing the terms classic, predominantly classic and occult to describe different forms of wet AMD. They are mentioned in the article I am reading but not well defined.

According to the American Macular Degeneration Foundation the terms classic, predominantly classic and occult describe the choroidal neovascularization (read “formation of new blood vessels in an inner layer of your eyeball”) that happens in wet AMD. Classic choroidal neovasculazation is characterized by well-defined boundaries. Average visual acuity is between 20/ 250 and 20/400.

Occult CNV sounds like it should be scary but it is actually the more benign. Occult lesions are not as well-defined as classic ones. They tend to leak less and average visual acuity is between 20/80 and 20/200. If given a choice, I would take this one!

Predominantly classic is, as it sounds, a mixed type. The other designation for this type is minimal classic.

According to Joachim Wachtin in Classical Choroid Neovascularization CNVs can also be classified by where they can be found in relation to the fovea. Some of them are directly under the fovea and are called subfoveal. Those that are extremely close to the fovea are called juxtafoveal and the ones that are farther away are called extrafoveal.

Like I said, lots of new vocabulary coming our way! But I do believe that, when in a strange land, you should always learn a few basic phrases. These are some basic phrases in the land of wet AMD.

My article takes a serious detour into science babble and I truly don’t understand much. Glaze over time! That means I am going to stop sharing info from it.

Hope these scraps of information fit into your ‘puzzle’ somehow. One of these days we will have gathered enough pieces of knowledge to actually figure out what the picture is!

In the meantime, keep on learning. In the famous words of Schoolhouse Rock, “….because knowledge is power!” Gather knowledge. Be powerful. Continue reading “Always Learning More and More”

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Always Learning More

Hey, there! I think I have found a good article on macular degeneration, our favorite but somewhat distasteful topic. The article is in Webvision and is entitled Age-Related Macular Degeneration. Another catchy title. The main author is Hageman.

Did you know the name up until around 1990 was ‘senile macular degeneration’? Makes it sound like our eyes have lost some of their mental faculties. Glad that was changed!

Also discovered the fovea is the center of the macula. It contains the highest concentration of cone photoreceptors and is the only region of the retina that can attain 20/20 vision.

I think when my optometrist said I had such an abrupt vision loss because the deterioration had reached the center of my macula she was talking about the loss of my fovea. That means 20/20 vision is no longer possible for me. Even if I use prisms or eventually get that eye max mono thingee, things will not be ‘perfect’. [Lin/Linda: she means the EyeMax Mono lens implant.]

This article says macular vision is 10% of vision! Estimates of degrees of arc of potential loss seem to be getting better, but don’t get too excited. Remember we are talking my interpretation of things I read. It is guess-work. I know nothing.

Although I used to think hard drusen sound more ominous than soft ones, it is actually the other way around. Hard drusen are smaller and soft ones are larger. If they are looking in your eyes and mention soft drusen, you have more of a problem than if they see hard drusen.

I thought that all dry AMD would progress to GA (geographic atrophy) if the person lived that long. This article says only 10 to 15% of dry AMD patients progress rapidly enough to ‘achieve’ GA. Interesting.

That means my visual state is something many of you will not have to experience. That is a good thing! And FYI? I am functional so you can remain functional as well.

For you ‘wet’ folks, the article once again cautions you to stay on top of things and get your shots. Left to its own devices wet AMD progresses to a cicatrical stage. Cicatrix is a fancy word related to scars and scarring. Disciform scars occur when fibrous tissues develop in Bruch’s membrane between the RPEs and the retina. Scarring is, needless to say, not good and can result in severe vision loss. Bottom line for this paragraph is: do not allow bleeds to happen to you!

Closing in on my 500 words and I still have pages to read in this article. I think I will close this page, read some more and start another.

And FYI, I emailed by doctor. And – while he also believes the increased density/opacity of my blind spot is related to expected disease progression – I am going in for a vision screen in two days. Perceivable changes in your vision? I expect you to call, too. Check it out. Continue reading “Always Learning More”

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I Promise

Greetings! Beautiful day. Sunny but cold. 37 degrees Fahrenheit. My friend who is ever concerned about my welfare knew my husband had pumped up my bike tires and thought today would be perfect for me to join her in a bike ride. Yes, I want to ride, but it is 37 degrees! Whoa.

New washer came bright and early this morning. I am actually very glad to be able to get some laundry done. Classic example of not appreciating something until it is no longer there.

Which brings me to our vision and a problem I heard about the other week. At least one member has retinal scarring. If one person has it, I suspect others do as well. I tried to look it up online and there was surprisingly little. Everything I found turned me around to macular puckers and holes. They are obviously all related, but what I was looking for was scarring in particular. If you find any good info, please share. Maybe write a page😀.

According to WiseGeek, retinal scarring is exactly that, scar tissue on and under the retina. Small scars are not that big a deal. Our wonderful brains just sort of erase them. However, big ones make problems by giving us visual distortions and loss.

What types of distortions? According to WiseGeek the Amsler Grid may curve and/or parts of it may pull out of position. Reading can be just about impossible for people with large retinal scars.

Cause of retinal scarring can be pretty much anything that causes the retina to become inflamed. That would include injury, illness and wet AMD. Repeated inflammation leads to the potential of bigger scars and more vision loss.  [Lin/Linda here: I found an article that says “People can develop retinal scarring from severe myopia, ocular histoplasmosis syndrome, and wet age-related macular degeneration (AMD). Scarring results from inflammation, caused by irritation of the retina. Severe occurrences  can cause swelling of the retina, wrinkling of the surface tissue, or even retinal detachment.” The article also talks about research into a compound that may prevent scarring in the first place.]

You hear the cautionary note there? For you folks with wet, very few things are more important than keeping up with your treatments and preventing irritation to your retinas.

Repeat after me: “I promise I will get my treatments in a timely fashion. So help me God.” Now spit in your hand and virtually shake….yuck. Who came up with that spit in your hand business? Obviously knew nothing about viruses and bacteria.

Treatments for retinal scarring appear to be limited at this time, of course. Because the available treatments are invasive, often the first ‘treatment’ is watch and wait. Other treatments are vitrectomy and something called a membrane peel.

We talked about vitrectomies in the past. In that procedure the gel like substance in your eye is drained. That substance, the vitreous, has string-like things in it that can adhere to the macula and tug. These ‘tugs’ create puckers, holes and scars.

Epiretinal membrane peeling is described in an article by Hampton Roy. The title is, aptly, Epiretinal Membrane Treatment Management. My interpretation is that in a peel, the surgeon teases off the upper layer of the retina. Maybe like trying to take off just one cell layer of an onion? Roy goes into explanations on a few different types of peels. My assumption is their assumption is the scar will be mostly in the top layer and can be removed this way.

So now you know everything I think I know about retinal scarring and its treatment. Remember, I am not a doctor and you should assume I know nothing when it comes to pretty much anything. The great majority of what I think I know has come off the web. Always check with your doctor. Continue reading “I Promise”

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Do As I Say

Happy Saturday! Welcome to Presidents’ Day weekend! (In real-time, of course.)

I had a nice, long conversation with a representative of the International Macular and Retinal Foundation (IMRF) last evening. (Based in Maine. With a name like that you would think London, Paris, Zurich.) They came upon this website and liked it! (Flattery may not get you everywhere with me, but….OK, so I’m an attention junkie; OK?😱) Thank you IMRF.

The IMRF publishes self-monitoring tools under the name KeepSight. They sent me a cute, little booklet with basic AMD information, puzzles and different monitoring grids. They are free. IMRF is hoping to spread them around to not only us AMD types but also to doctors’ offices and other places people at risk may congregate. What they are trying to do is stop the progress of dry to wet before severe damage is done.

OK. Let’s stop here for a second. Don’t freak out. According to Bright Focus, only 15% or so of us with dry progress to wet. Lin just wrote a piece on the two types of advanced AMD. They are wet and GA, geographic atrophy. The second one is me; remember? I just got moved to appointments every six months because with my level of macula loss through GA, my chances of changing to wet are slim. Thank God. The more severe damage is done in wet.

Anyway, in the interest of full disclosure – in other words, I can’t lie to save my life so I stopped trying! – I admit I am not big on self-monitoring. My chances of progressing to wet are slim and I am, by nature, a bit of a rebel. However, that is not going to keep me from pulling the old “do as I say, not as I do!” trick on you.

Most of you have a fair amount of macula left and are in the earlier stages of the disease. Do you know you are not going to be part of the 15% that goes wet? I sure don’t. Which means you should self-monitor your vision.

Mayo Clinic gives the following symptoms for wet AMD and an eye bleed:

  • Unusual distortions – that means the wiggles and things with the tops cut off and moved over
  • Reduced central vision
  • Decreased intensity and brightness of colors
  • A well-defined blurry or blind spot in your visual field
  • A general haziness of vision
  • And the important one: Abrupt onset and rapid worsening of symptoms.

In geographic atrophy my macula has been slowly deteriorating. The two times I had a rapid decline in vision scared the daylights out of me and sent me off to the retinologist the same day. If you have a rapid decrease in vision, you should do the same.

The KeepSight booklet has some nice grids and examples of what a problem may look like. If you can’t get a hold of one of their booklets, at least print off a copy of the Amsler Grid and tack it on the fridge. Then use it! Remember, do as I say, not as I do! Continue reading “Do As I Say”

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