Tag: dry AMD

Sue on Assignment: Mitochondria – Part 2

Like I said, it looks like they are now investigating the role of mitochondrial DNA in retinal diseases. Researcher Christine Kenney proposed damaged mitochondrial DNA sends signals that cause retinal cells to die at an increased rate.

Since a woman passes her mitochondrial DNA to every one of her offspring – unchanged except for possible mutations – and each of her female descendants passes the same mDNA to her offspring, it is possible to trace maternal lineage fairly easily. And you want to hear something wild? See Wikipedia for more data but suffice it to say here, researchers believe they have located the time and region of the most recent, common, female ancestor for us all. Or at least of whom we are aware. This woman lived in sub-Saharan Africa about 150, 000 years ago. How many greats Grammy would THAT be? Wow.

Now, since then mutations have happened and subgroups – referred to as haplogroups – have been produced. And that gets me back on track here. Kenney discovered our family members who are Jewish and originated in Central and Eastern Europe – you can think of them as Aunt Millie’s kids in Cleveland if that makes it easier for you – have much more AMD than Aunt Mary’s kids in Dallas. Those family members are black and came from Africa.  For all intents and purposes, the only  consistent difference between these two branches of Mom’s family is their haplogroups.

Hmmm, the plot thickens.

Nw, the problem becomes, this is just one more line of inquiry for AMD research. We thought we were looking for the needle in two haystacks – nucleus genes and environment – and now we are looking in three! We have to add mDNA to the list!

Kenney has decided to concentrate on the mDNA “haystack”. She has compared the Ashkenazi Jews (Aunt Millie’s kids in my little family saga) to Aunt Margaret’s kids. Aunt Margaret’s kids are white, Western European.  Aunt Millie’s kids have major differences in cholesterol and lipid metabolism, different inflammation and complementary genes and they have different sensitivities to amyloid, a toxin found in AMD and Alzheimer’s disease.

It would seem Kenney is on to something.

Fast forward to this week. Stealth Biotherapeutics has been granted FDA fast track status for elamipretide, a mitochondrial targeted treatment for dry AMD. This is a phase 1 study and is concerned with safety and tolerability only. This stuff is very early in the game. [Lin/Linda: both Sue and I missed the part of this press release that says, “In early 2019, Stealth plans to initiate a Phase 2b, randomized, double-masked, placebo-controlled clinical study to evaluate the safety and efficacy of subcutaneous injections of elamipretide in patients with dry AMD with geographic atrophy.” Sorry about that!  You’ll see that we’ve added a page to this series – see the link below.]

Elamipretide is hoped to restore the mitochondria’s ability to produce energy. It can be applied directly to the eye or injected. I thought I saw it could be a standard injection and not an eye shot, but now I cannot find where I saw that. Don’t hold me to it.

And there you have it. Here is another, possible line of inquiry for discovering what is happening to our retinas. And more importantly, in trying to stop and maybe even reverse it. Here’s hoping!

(And a special thanks to our cousins, those of  Ashkenazi descent, who are participating in this research. Their mDNA makes them like Baby Bear, “just right”,  for the research. Their willingness to help might take us to a cure.)

Written December 13th, 2018

Next: Sue on Assignment: Mitochondria -Part 3

Go back to the list of “On Assignment” pages

No Train for Christmas

Hi! Server is down again. This does not bode well. I have two hours I could be working, but I guess I bother you folks again.

Like I said, Lin gives me stuff. This one she gave me with the warning I need to be good. Generally, that is advice that goes in and one ear and out the other. I am a brutally honest sort. One of my mother’s favorite questions for me growing up was “Can’t you lie?” I assume you get the point. [Lin/Linda: Sue is paraphrasing what I said. What I said to her didn’t include a ‘warning’.  Whatever advice I DID give her obviously went in one ear and out the other. ::grin::]

The last article Lin gave me was the results of a poll taken by general ophthalmologists, retinal specialists, and patients with AMD. The poll asked for the highest priorities in retinal research. Number 1 was “the development of choroidal neovascularization.”  Number 3 was “retinal hemorrhaging.” Both of these are, of course, related to wet AMD. The second one had to do with studying geographic atrophy, i.e. advanced dry AMD.  Number 4 was “gains in vision.” Number 5 was “slowing vision loss”, and 6 was “serious ocular events.”

Now all of these are fine and noble areas of endeavor. I don’t have a problem with any of them in theory. So, why did Lin suggest I try to behave myself and not stir up trouble? Emotionally I have some problems with it.

Imagine a kid at Christmas. Her brother gets a train. She gets told there was nothing available for her they could buy. She gets nothing.  The next year her brother gets a bigger and better train. It will run smoother and go faster. She gets nothing. Her parents tell her they thought there might have been something for her, but it didn’t work out. Maybe next year. Next year comes and brother gets all sorts of accessories plus an even better train. Nothing for our girl. Nothing available.

I am getting tired of being that girl. I go to the research and there are nine, different, exciting opportunities for advancements in Wet AMD research. The tenth one may be for dry AMD, but it is often something that has since “died” in clinical trials.  No joy again.

Very selfishly, I feel we need to be first on the list. I appreciate you wet folks go blind more severely and much faster. I appreciate eye shots can be pretty horrible. The thought of having someone put a needle in my eye might make me want to throw up.

On the other hand, I would also like you wet people to try to appreciate what it is like to come to the table time and time again (or to the Christmas tree. Sorry for mixing metaphors) and come up empty. Think of the frustration and the demoralization of religiously looking, reporting great news for other people …but finding nothing for you.

Eye shots are horrible, but if they could come up with an eye shot that would stop the progression of this disease, I would be fighting to be at the front of the line. At least it is something. Right now we have nothing. [Just to be clear, the injections for wet AMD do NOT stop the progression of AMD. They work to protect the vision a person has. Sometimes, that only works as long as one is having injections. Sometimes, sadly, they don’t work at all or for long. In either case, there is no way of knowing ahead of time – it’s an injection-to-injection battle.]

So, yes, I get snarky, and I can be offensive. Some people don’t like my snide comments about how the wet people have another, miraculous advance coming down the pipeline and we have…nothing. Please just remember how blessed you are and wish your dry brethren a little bit more than nothing under the tree…and spare me a charitable thought when I look with jealousy on what you have. It is not easy out here.

August 28th, 2018

Next: “Wrap Up” Blindness in our Lifetime!

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No Respect

Anybody remember Rodney Dangerfield?   His catchphrase was “I get no respect”.

Although I have at times thought that dry AMD was being treated as the proverbial red-headed stepchild, I have always tried to talk myself out of that attitude. The people with wet have real problems. They are one bleed away from blindness. It makes sense they would work for a cure for them first.

However, I finally found someone who at least in part shares my concern. Philip Rosenfeld  down at Bascom-Palmer feels the same way. He doesn’t think dry AMD gets any respect either!

Rosenfeld talked about how all of the clinical research seems to have been focused on wet AMD. However, the truth of the matter is good responders to Anti-VEGF and dry AMD folks alike just keep getting blinder. Rosenfeld remarked how atrophy after ‘eye shots’ and dry AMD has become the most common causes of vision loss from AMD.

Rosenfeld – bless him! – goes on to say the effects of dry AMD are  ‘underappreciated’. Go, Philip! You tell ’em, buddy!

The functional vision loss associated with macular atrophy can be devastating. Okay, so we don’t have these dramatic crises like the wet people but that doesn’t mean we are not suffering. Dry AMD folks have feelings, too.

In addition Rosenfeld goes on to say the proof that dry AMD – and I quote – “never got the respect it deserved” can be found in the International Classification of Disease codes. Dry AMD was seen as so unimportant that there were  no subclassifications.  That is sort of like saying cancer without assigning a type or a stage.  Does the patient have stage 1 skin cancer and we remove the offending spot in the dermatology office or is it stage 4 bone cancer?  Doesn’t matter. It is just cancer.

Once again Rosenfeld notes the societal impact slowing macular atrophy will have. He remarked that vision loss has real impact on quality of life and it is much more than reading letters on an eye chart.

For example, I could not read the forms given to me at the veterinarian’s yesterday. I asked for help. (In case you did not notice, I am trying to be a good role model here. Do ask for help!) Multiple the three minutes the clerk took to help me by 1,000. How about 10,000? That is 500 man hours the people who are helping us could be doing other things!  Good grief.

Rosenfeld then went on to talk about how it has finally dawned on some researchers that we really may be having – and causing – some real problems.  Enter the studies they are now trying to slow the progress of dry AMD.

Lampalizumab looked promising but died in the stretch. Horse racing idiom there.

APL2 is getting a lot of hype. Just the same, there are concerns. As we saw, some people who saw the PowerPoint presentation on the drug  decided “this horse is lame”. (Coming from my heritage, I prefer “that dog don’t hunt” but the idea is the same and I really did not want to mix my references ?) [Sue wrote about this in her page Another $64,000 Question.]

Rosenfeld opined that failure of APL2 to produce any substantive functional vision differences may lead to the question of when to intervene with dry AMD. Rosenfeld seemed to suggest early intervention may be better than late.

Me? I am with Rosenfeld. We know where this stuff leads. There is no question of the potential endpoint. I say nip it in the bud! Treat early!

But who am I? Just somebody with a disease that gets no respect.

Written April 1st, 2018 Continue reading “No Respect”

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?”

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”

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”

Shimmering

Albert Einstein once said “the more I learn, the more I realize what I don’t know.” Apparently I am in good company, because I feel the same way.

With no immediate crises in my life and no immediate reason to freak out – and even with geographic atrophy and permanent retina damage, this state of affairs is possible! – I have been trying to get caught up with some research. I keep running into things I have no knowledge or understanding of.

Lin suggested that after over a year we should know SOMETHING about these things. We don’t. For example, I am still clueless about what I can expect concerning the progression of density of my ‘blind spots’.

And speaking of disease progression, (was that a smooth segue or was that a smooth segue??), I do have a couple of things to say about disease progression from that last article I read. Remember the one on GA?

The article opined all the new interest and hoopla about dry AMD came from the success with treating wet. However it wasn’t why I would think. You know, we have scaled that mountain and are looking for new summits sort of thing? Nope, the reason was they discovered that even after severely limiting the development of neovascularization in eyes, the eyes just kept right on progressing with dry AMD! Sorry, darlings.? It seems a former wet AMD eye becomes a dry AMD eye.

And dry AMD – to my great chagrin – progresses. How much? I assume it can take the entire macula but I have not seen that definitely stated anywhere. I have seen it stated that it generally stops with the macula. Maybe not such a ‘small’ favor. Could be a lot worse.

The last thing I learned from that article is how best to document disease progression. That is with something called cSLO FAF. Isn’t that informative? Exciting even!

OK, OK, just ‘funning’ with you. I looked it up. Fundus autofluorescence is diagnostic imagery. It detects fluorophores in the retina. Fluorophores being chemicals that re-emit lights shone at them. Research quoted by Wu in Use of Fundus Autofluorescence in AMD said risk of wet AMD can be predicted by a patchy reflection pattern and lots of ‘shimmer’ (my word) at the edge of a patch of geographic atrophy is predictive of cell death and growth of the GA. The more ‘shimmer’ the worse the trouble you are in. [Lin/Linda: We hadn’t had a music reference for some time.  When I hear the word ‘shimmer’, I think of John Lennon’s song “Julia” which uses the word ‘shimmering’, hence this page’s title. ::smile::]

So if anyone throws a bunch of letters ending with FAF at you and says you are going to have that, it may be they are checking for disease progression. I cannot remember ever having one, but it is noninvasive so no biggie. Should not hurt. Just more pretty pictures. Hopefully they will find something good.

Pretty much it for now. Will probably write some more nonsense between now and then, but Wednesday I am going to another support group meeting. They are demonstrating an electronic monocular called a Mojo and I want to see it. Will let you know!

Chat with you later!

 

written May 6th, 2o17 Continue reading “Shimmering”

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.

written April 25th, 2017

Continue reading “Always Learning More”

Good Thought, Bad Thought

Back again in the same day. You do know I am ridiculously hard to get rid of; don’t you??

This is the page I was going to write before my ZoomText, inelegantly put, took a dump. Now I will write it.

I went to see my local retinologist Monday. Great guy. He is good. His kids are good. I feel I see him enough I get to inquire about the boys.

I also feel like I am becoming ‘friends’ with my tomography tech. We chat. I asked about the enhanced depth tomography. He had the capability with his machine and since it would not cost any extra, he ran it on me. The pictures were pretty. I saw my optic nerve and my ‘divot’, geographic atrophy, but did not have the training to see much else.

The tomography tech pointed out two veins in my choroid. They were old veins, not new ones. It is sort of bizarre to realize how relatively deep the hole is in my macula, but that is a part of the definition of geographic atrophy; the damage is choroid deep.

Neither my local retinologist nor I believe I will convert to wet AMD. He has put me back to twice yearly for my check-ups. It was my understanding, and my retinologist confirmed, that wet developed as an adaptation (sort of) to the dry form of AMD.

The way I understand it, when the RPEs and the photoreceptors are not getting enough oxygen and nutrients they send out the SOS . They need supplies! They are starving! The body responds by establishing new supply lines in the form of new blood vessels. The only problem is these vessels are inferior. They break and the bleed. Problem not solved. The fix does not work so well.

I got the impression I am back to twice yearly visits – and he does not think I am a candidate for wet AMD – because I don’t have a lot of macula left. Now he did not say that. It was an impression but I am usually pretty good at those. I don’t think there is much for my body to try to save anymore.

Good thought and bad thought. Or actually bad thought and good thought. Bad thought that I may have reached this level so quickly. Good thought: could the slide be over? Will I soon stop losing vision?

Now, cheating my sweet little patootie off and using eccentric viewing and guess work to the max, my vision tests as 20/50. Am I really 20/50? No, but I cheat well. And they know I cheat, by the way. I tell them every time.

If I can cheat and test at 20/50, that means I have decent functional vision. I can do a lot with that. Not so bad.

So why all the horror pictures of visual fields that are 90% bleach white with decent vision around the edge? If this is a ‘central vision loss’ problem, what is the definition of central vision?

No clue, but Lin and I are on the hunt. Let ya know. Continue reading “Good Thought, Bad Thought”

Highlight: Here’s a GREAT website especially for those with wet AMD

Lin/Linda here: Every once in a while I find a website and/or Facebook page that stands out.  Here’s one of those.

The website and Facebook page are called The Science of AMD: Our vision is to save your vision.  It is presented by the Amgiogenesis Foundation. Their headquarters are in Cambridge, Massachusetts.

Click here to go to the website. From there, you can connect to Facebook, Twitter or YouTube using icons in the upper right corner.

What is angiogenesis? From the website: “Angiogenesis is the process used by the body to grow blood vessels. In healthy adults, normal angiogenesis occurs in healing wounds and reproduction, but in all other situations, it is abnormal.”

It’s what causes wet AMD: “Wet AMD is caused by abnormal angiogenesis, when new vessels grow under the macula, disrupting the central region of the retina. These new blood vessels bleed and leak fluid, causing the macula to bulge or lift up from its normally flat position, impairing central vision. If left untreated, scar tissue can form, and central vision is irreversibly lost.” 

What’s so special about the website?
  • From a design standpoint, you can change the size of the font and the color of the font & background, you can choose a version of the site in any of 7 languages as depicted by flags, it’s easy to navigate.
  • Format of content includes printed text, videos, audio, graphics, PDF files and more.
  • This is not just for the US, there are resources available for other countries as well.
What information can I find there?

There’s a menu with Learn, Treat, Resources, Connect, About, Donate.  I suggest you start at Learn!   The emphasis is on how angiogenesis causes wet AMD and what can be done to treat it.

OK, now go and explore! Let me know what you think!

Wintry Mix

It was a rather sloppy, cold day today. We had what the weather services refer to as a wintry mix. My ride to exercise classes decided she did not want to go out in the mess. Understandable, especially since I landed flat on my back twice at the dog park. Ice under the snow and I walk with a heel strike. Heel down and whoopsie! Yet another reason I need to keep exercising, though.

Being in decent shape, I tend to bounce and not break. Fortunately there was no one nearby to hear the crazy old lady cursing and laughing at herself as she lay in the snow….twice.

Anyway, I ramble. Not a bad day. We took the recycling and went for pizza. Took Beastie Baby to the dog park. I finished a short report for work and I am now – gasp- cooking. You know I have run out of things I even remotely enjoy when I get domestic.

I could be willful. I could get all pissy and declare if there is nothing I want to do to do, I will do nothing! That will get me nowhere but miserable. Problem is, I am stuck in the house with myself! It is after dark and we are now getting freezing rain. I need to be willing to entertain myself with what is available.

I am lousy company even for myself when I am bored and miserable. Willingness as opposed to willfulness needs to be the choice.

And while things are in the oven, I am reading an article Lin sent me. When I was a teen, our family doctor thought I should go to medical school. Maybe if I had done that, I could actually decipher this thing!

The Saudis wrote this article, Update on clinical trials in dry Age-related Macular Degeneration. It is a review of the research up until November, 2015. The abstract says none of the biologically-oriented therapies have resulted in vision improvement, although I would say some of them probably slow the deterioration process. It also says the stem cell studies show promise. Yippee! That means if I hope to exceed my basic goal of stopping the progress of the disease, I have chosen well. (If this is the first of my pages you have read, I am applying to two stem cell studies.)

I have picked up a couple of facts from the article. Geographical atrophy – the divot where my photoreceptors used to be – is “sharply delineated” and by definition at least 175 microns. I assume that is across. 175 microns is .00689 inches. That is a tiny little space to be causing all these problems! The divot also needs to be deep enough to show the blood vessels in the choroid.

I also found out that hard drusen are a sign of normal aging. It is the soft drusen that are the troublemakers. There are all sorts of other drusen, too. It all appears rather complicated. [Lin/Linda here: click here for my post about drusen.]

I will try to be willing and slog through the rest of this article. It is informative, just over my head. Let you know if I learn anything.

written 12/17/2016

Continue reading “Wintry Mix”

The Waiting Game

Yesterday was my third appointment with Regillo. Quite frankly I was hoping for great things. Hoping I would get a definitive answer and it would be positive! No such luck. My ‘answer’ was another “maybe”.

What criteria are they using? No clue. I was told my eye condition certainly qualifies me. Beyond that, I got no inkling of what I need to do to move up the list.

After a year and a half, I am getting more and more frustrated and antsy. If there is a way to become a prime candidate, I don’t know what it is.

Anatomy of the eye-click on the image for more information

I did learn a few things. Contrary to what I read, the good doctor says everyone has a suprachoroidal space (SCS). [Lin/Linda here: the SCS is the space between the sclera (outer part of eye) and choroid (space below RPEs).  It’s important in both clinical studies Sue is referred to because both insert the stem cells into this space; more about the clinical trials below). Not sure why the difference between what I read and what he said. I know I read something about ‘forcing’ (my term) an SCS in guinea pig eyes. They did it by injecting saline solution between the appropriate layers. Maybe the difference is between having a space and having a medically useful space? I might be wrong but I got the impression the delivery system works better when there is fluid in the SCS. Maybe not. Anyway, everyone has one. I am just not sure if you need the fluid to accommodate the delivery system. If you really want to know, check with your eye doctor. I am still trying to piece this all together.

The next thing I found out was the Ocata/Astellas study may resurrect sooner than I was originally told. I had heard two years or more and now I am being told 2017. Sweet.

I was asked which one I preferred. The one I would prefer is the first one to come to fruition! I will be dancing in the streets to be asked to participate in either one of them.

So that is where I stand now. I have been given two strong maybes. Is that a guarantee I will get something or do two nothings equal nothing? It is driving me crazy!

So back to practicing my distress tolerance skills. I have to ACCEPTS my situation. Engage in activities and contribute to others. I have to compare my situation to those of others and be grateful; things could be worse. Doing things to laugh will help me to have opposite emotions and I can push away problems I cannot solve at present. I can also have pleasant thoughts and intense sensations that distract me from my frustrations. It can be done. I have done it for a year and a half. I can keep on.

written 12/16/2016

Continue reading “The Waiting Game”

Fairy Tales

The more you talk (and moan and complain and lecture) about AMD, the more people you find who have it. I guess that is the power of advertising.

Anyway, today one of the teachers sat down across from me at lunch. She had just been diagnosed with dry AMD. Her optometrist told her that her eye was ‘drying out’. What the hell????? [Lin/Linda: with wet AMD, there can be a ‘drying out’ especially after injections but not with dry AMD.]

In my usual ‘understated’ and ‘subtle’ fashion I told her either he did not know what he was talking about or he had given her the ‘idiot’ explanation. Really.

Nothing ‘dries out’ in AMD. Old. Yeah. Visually impaired. Yep. Stupid? No. We really can handle more than the fairy tale explanations.

I put her on to this kickass website I know ?. She is an intelligent woman and can handle ‘real’ information!

Another thing she said was that she had noticed my eyesight had gotten ‘better’. Like I said, her doctor had obviously given her the fairy tale version of AMD because we all know there ain’t nuthin’ getting better about it!

It made me wonder, though. What exactly had she noticed? I know several of my doctors had said performance on an eye chart will ‘improve’ because patients memorize the chart. See the thing 600 times and you almost can’t help but memorize it. Maybe they should have A and B versions? But I digress… Is it possible she has seen an improvement in my functional vision? You always hear practice makes perfect. Have I been becoming a more ‘perfect’ visually impaired person?

Since I tend to be wary of anything that promises you the world and costs the proverbial arm and leg, I ignored the visual training programs that I found online and honed in on some things that were called perceptual learning and sensory efficiency. These are things they teach to kids, so I should be able to handle them. Also, the one website had links to suggested activities for no cost. That is a synonym for one of my favorite words: free!

Sensory Efficiency by Carrie Willings listed all sorts of ways to enlist your other senses in an effort to ‘see’ but it also talked about some of the visual perceptual skills you learn about in educational psychology but have not really thought about in a while. To wit: Would more purposeful visual scanning be useful? Am I doing it? Am I sharpening my visual discrimination skills and looking for detail more purposely? What about visual closure and figure-ground? Visual memory? Maybe getting some ‘kids’ games’ and practicing these skills would help? Maybe I have been unconsciously paying better attention to them since losing sight?

Like many things in life, I don’t have the answers to any of these questions. I know I have become more cautious when working visually. I try to see differences and sequence mindfully – a word with many uses!? It might be helping.

OK. Right now it is after bedtime and I have found several interesting things to read – including an article on reading – and try to digest. I will get back to you about this visual perceptual business. Dunno if any of it will help but I doubt it would hurt. Continue reading “Fairy Tales”

I Have Macular Degeneration…Now What?

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

Where can I quickly find information about AMD?

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

Click here to go to Guide Me.

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

Click here for a good list of Frequently Asked Questions.

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

What other websites are helpful?

Here are some of our favorites:

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

Click here for a video that covers important information about AMD

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

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

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

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

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

Click here for a very comprehensive page about wet AMD

Click here for a very comprehensive page about dry AMD

Click here for an article about how fast AMD progresses

Click here for 10 questions to ask your doctor

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

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

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

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

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

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

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

Where can I do more research?

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

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

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

How do I move around on the website?

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

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

Reviewed 02/14/2022

 

 

 

 

News: Stem Cell Clinical Trials in the UK

For Those in the UK

Click here for an article about a UK patient at Moorfields Eye Hospital in London as part of The London Project to Cure Blindness.  Click here for the press release dated September 28, 2015, that describes the ongoing project.  The patients in this study have wet AMD.  This is apparently the first study of its type in the UK.

Click here for more information about the stem cell research trials including 2 videos and a graphic illustration of where the stem cells are implanted.

Want to know more about what stem cells are, where they come from, and how they are used?

For more information about stem cell research, click here to read Sue’s page where I’ve placed quite a few links to helpful articles.  There’s also a link to the clinical trials website for the US.

For more information

News: Stem Cell Treatments – Successes, Concerns, US Legislation

 

In The Beginning

February 2015

I am a 61-year-young woman. Life is good. I am at the top of my career. I am active. People tell me they want to be me when they grow up.

February 2016

I am going blind. I’m terrified.

June 2015

I am driving down Route 11 with the windows open. Something gets in my right eye. No biggie. Wipe it out. With my right eye closed, the car in front of me disappears. Oh shit. Open the right eye again and the car in front of me is back. Close the right eye again and it disappears. There seems to be a problem here.

A call into my friendly neighborhood ophthalmologist gets me an appointment for the same day. They think it’s something serious. After several different tests, I am given a diagnosis of dry Age-Related Macular Degeneration (AMD or ARMD).

When I was in third grade, I had a button that said: “we never guess, we look it up.” In the age of the Internet and Google, this has become one of my credos. I look it up.

We never guess, we look it up.

What I find out is that Macular Degeneration (MD) is an eye condition in which the fine focus part of the eye stops working. There is actually a more complicated mechanism behind it but we will leave it at that for now. I will visit the science stuff later.

Macular Degeneration is thought to be genetic. Looking back, I realize my father had it. It also happens more to white people than other races. It happens more in women than in men. And, thus the name. happens in those of us who are over 55. Those are the static variables. (Static variable, sounds like an oxymoron to me.)

I’m in the static variables, I am guilty, guilty, guilty, guilty. Among the lifestyle choices that are factors in AMD, not so much. I have never smoked and I am in fairly good shape. The jury is out on whether or not my history of high blood pressure has anything to do with my developing the condition.

So here I am, based on the static variables, a really good candidate.

What exactly, however, was happening in those big brown eyes?

Written in February 2016; updated September 2018

To fast forward to what Sue’s life is in September 2018, read In the Beginning – Revisited

Click here to go to a short video that explains the basics about macular degeneration

Next: The Science Stuff

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