Category: Research

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”

Avoidable Blindness

I still get National Geographic even if I don’t read it cover to cover like I used to. I mean to get back to it – I really do; I love it! – but CCTV lights shining on glossy pages are a bit much. However, when my husband handed me a pile of old Nat Geos (National Geographics) and I saw the cover of September, 2016, I had to read at least one article. The title was The End of Blindness: Winning the Fight to See.

My first thought was “We have made the big time!” Cover of Nat Geo is absolutely the big time in my book. Then I thought “Everything they are saying about the incredible research and the discoveries made really is true.” Nat Geo for me is sort of like Walter Cronkite; if they say it, it is true.

The article has some scary statistics: 39 million people are not able to see, as in no functional vision at all. 246 million have reduced vision. That is rather a lot of people.

The article went on and talked about the research that is occurring. It talked about genetic engineering and stem cells. They also mentioned two different types of ‘bionic eyes’.

In addition, it mentioned that Sanford Greenberg has pledged $3 million in gold to the person who contributes the most to ending blindness by his end date, 2020, of course! (Better get busy on your cure projects!) The Audacious Goal Initiative continues going strong, handing out money to worthy research projects. People are putting their money where their mouths are and getting behind this campaign.

Eliminate all blindness by 2020? Great goal, but probably not attainable. Curing avoidable blindness might be possible. Avoidable blindness?

AMD is my condition and my passion. I am doing well but I would do a heck of a lot better if someone found a cure for this stuff. Problem is, according to Nat Geo, AMD is a piddly 1% of the total picture! It is important to you and me but it barely makes a blip on the world radar.

If our condition is so insignificant in the big picture, what is significant? Refraction errors. That is 43% of the problem. Nearly half of the vision problems of the human race could be cured by giving people glasses.

Guess that means we all get to dig in drawers and find our old spectacles. Call your local Lions Club to find the nearest collection box. Or better yet, Walmart Optical is supposed to collect them. Drop them off the next time you go shopping. Better they are helping someone to see than sitting in a drawer for the next decade or two.

And if you really want to get rid of more sight problems, try cataracts at 33%. In the developing world people with cataracts get to go blind. No one to do the operations is part of the problem. Nat Geo says Niger has 18 million people and 7 ophthalmologists! The other problem is funding. Subsistence farming does not allow one to pay for medical specialists.

One last plug and I am out of here. Nat Geo mentions a worthy charity: SEE International. Stands for Surgical Eye Expeditions. They provide cataract surgeries free of charge.

Done here. Bed time! Night! Continue reading “Avoidable Blindness”

Taking Time

Good morning! Dishes in. Laundry in. Email checked. Time to settle in to write a page and avoid all that REAL work. You know: clean the bathroom, write a report, etc.

Not going anywhere today. All my beautiful snow is being ruined by a hard, cold rain. Also, hubby now has what I am getting over and he is ‘indisposed’. (I am no longer the world’s largest snot bubble, by the way. Score!)

But onward! Got an email from a reader who is having a struggle at a job that has a high reading load. I don’t totally ‘get it’ because I have dry AMD with no wiggles, but I believe the wiggles and vision distortions are greatly interfering with her job performance.

Never thought looking around the blurry spot was a blessing, but comparatively speaking maybe it is. I have a serious propensity for motion sickness and that would probably have me ‘indisposed’ most of the time.

Have you ever seen that woman who gets off the plane and hugs the ground to stop spinning? That was me. God help me if I had wiggles!

But once again, she digresses! Returning from left field here, I want to address temporary ways of leaving – and returning! – to jobs. I was lucky. I have said it a thousand times and I will say it again, I am blessed. I know and work with the BEST people and I have resources. When I could not see and was struggling, I just called in and took my leave. A few weeks later, I came back. Lived on savings. No problem.

What about the rest of the world who may not have my blessings? First of all, I am not an insurance salesman, but temporary disability insurance may be in order. It does not have to be with ‘the duck’- although I do like the commercials. [There are commercials in the US for Aflac Insurance and their mascot is a white duck.] Just make sure you don’t lose the farm if you cannot work for a period of time. There are a variety of plans. Look them over.

And what happens when you have used up all of your sick time and paid leave? In the USA we have a federal law called the Family Medical Leave Act (FMLA). The government published a nice brochure that can be found at – oh, dear Lord, the URL is three lines long! Lin can put the link in here, please:xxxxxxxxx. [Yes, of course, I live to serve you ::grin::]  Click here to go to the page that describes the FMLA.

There are a lot of ‘ifs’ but for the people who qualify, you can get 12 weeks of unpaid, repeat NOT paid, leave and still come back to employment. They offer a decision tree for you to determine if you and your employer qualify. The definition of qualifying conditions is a little murky but I would think not being able to see well enough to do your job comes in there somewhere. Unsubstantiated opinion, though.

Please note I said return to employment, not necessarily YOUR job. They are allowed to put you in a ‘comparable/ equivalent’ position. You may have left as a first grade teacher but come back to a third grade position.

One of the really nice things I see about FMLA? It gives you time. You get time to let the dust settle and study out your options. Act; don’t react. FMLA might just give you the chance.
Continue reading “Taking Time”

Lamp Stuff

Lampalizumab. I am not sure how to pronounce it and I have to copy the spelling so I am going to call it the ‘lamp stuff’. Be offended at my laziness if you wish. Right now I am just one big snot bubble. Be glad you can not get this stuff through cyberspace – hack, cough, sniffle!?

Lamp stuff looks like it is making it BIG. It looks as if it is the shining star (lamp, star, ha, ha….ha?) of potential treatments – that word was treatments – for geographic atrophy from dry AMD. This is the first treatment for dry AMD and people are excited.

Please note the word was not cure. Sight is not restored but the rate at which you are losing your sight is lessened. Still fantastic news.

Lamp stuff is being developed by Genentech / Roche. It is supposed to inhibit the functioning of the complementary immune system. Remember my friendly fire/gang that couldn’t shoot straight analogy? All that complementary immune system cascade stuff is dampened and the good guy retina cells are killed by their own guys less. This is again good news.

Steven Schwartz, the west coast wonder kid in retinology, reported lamp stuff is a humanized, monoclonal antibody that inhibits factor D. It is supposed to block activation of the alternative complementary system without harming the host defense response. Like I said, limits friendly fire casualties while still allowing bad guys to be fought and killed. But I have no clue what that monoclonal stuff is all about.

The lamp stuff is another injectable, right into the eyeball so you can’t be squeamish. However, it is doing so well the researchers are starting to ‘rollover’ subjects from other, less successful studies and also to offer the treatment ‘open label’ instead of blind trials. To me, that last one means they don’t believe placebo effect is a factor. Lamp stuff has a robust enough effect they just aren’t worried about other variables.

How much of an effect? Schwartz said 20% reduction in rate of deterioration in most. Those with a CFI biomarker showed a 44% reduction in deterioration.  [Click here for the article.]

The market sites I looked at were all buzzing with optimism for lamp stuff as well as for several other, potential treatments that are supposed to come to fruition in 2017. Some of the pharma companies’ stocks are hopping. If you cannot get in in time to save some vision, maybe you can make a killing in the market. Talk to your broker. There is lots of reason for hope now.

And speaking of right now, snot bubble here needs to get cleaned up. No work today (6” of snow) but I still should make an effort.

Sneezing, snotting, and sniffling my day away here. Hey, did you ever notice all of the SN words that go with your s’nose?

I will just leave you with that profound thought to ponder?. Continue reading “Lamp Stuff”

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!

Kids and Zombies

This page is going to be another mixed up affair. I don’t have a full page on either of a couple of totally unrelated topics. Hope you don’t mind if I cobble them together.

First thought: I have talked about loving my big people and have not said anything  about my little people. Let me correct that.   I love my kids!

We may have an exceptionally tolerant and loving group of kids at our school, but I don’t think so. I think kids are just naturally adaptable and loving. It is the nature of the beast.

Anyway, my kids are wonderful. They take my telescopic glasses and CCTV in stride and think they are cool. My disability? Yeah, she doesn’t see well. What else is new? So what? Can we move on now?

The other day I was waiting for my ride, sitting in the office with all my gear. A little girl about seven was waiting for her mother. The little girl asked about my stuff and I first told her I have an ‘old lady’ eye disease. I think I am going to take this little darling home with me! Her response was “you are not an old lady!”

Then I told her I used the equipment to help me so I could continue to work with the kids at school just like I like. Her response? “Thank you”. OMG. I love my kids.

Second topic: Back to stem cells. Lin gave me an investment article. It was dated July, 2016. Mark Collins writing for marketexclusive.com suggested people invest in….drum roll, please….Astellas Pharma!

For those of you who just walked in, this is the company sponsoring one of the stem cell trials I am signed up for. I am thrilled to hear that this company is being touted as a good investment opportunity. It means the company is seen as a moneymaker. And how are they going to make money? By bringing the stem cell treatment to market, that is how!

Collins cautions this is a somewhat long-term investment. It may be two or three years until the product is brought to market, but the financial analysts are very positive about its future.

I am signed up for phase 2 clinical trials. If Collins is accurate in saying they should come to market by 2020, phases 2, 3 and 4 will have to come about in pretty short order. Good.

One more quick note: please remember RPE stem cells may stabilize vision. That means things won’t get worse but they won’t get better either. There is a bigger maybe for restoring some vision. Subjects in phase 1 got a few letters (not lines) on the eye chart back. RPE stem cells do not cure AMD.

Geographic atrophy, aka advanced dry AMD, means I have dead photoreceptors. Dead is dead. No zombies are produced in this procedure. That means it is not a cure. They are working on a cure but it is not expected for at least 10 years.

[For a review of what RPEs and photoreceptors do, see Sue’s page The Science Stuff.]

As always, I often do not know what I am talking about, so please check the stock tip with your broker….but if you make a billion dollars? Remember me! ? Continue reading “Kids and Zombies”

The Cockeyed Optimist

One of the books nephew #2 considered necessary for educating Aunt Susie was Steven Johnson’s Where Good Ideas Come From. I listened to it and it came to mind today when someone insinuated I was perhaps naive to have such faith in stem cell research.

I will eternally be a cockeyed optimist but I don’t believe I am unrealistic. Johnson has a concept I call “you can’t get there from here” and he refers to as the adjacent possible. Have you ever wound your way through a large museum? You cannot get from the marine invertebrate section to the land vertebrate section. They don’t connect. However by traveling through marine vertebrates, you find your way. Same concept. We are not in the stem cell cure ‘room’ and we cannot get there from here. But if I can help the researchers get into the next room, maybe even the one next to the stem cell cure room, I want to help.

Truth of the matter is, astounding leaps and eureka moments are rare. It is important to support the people finding the slightly closer rooms, one room at a time.

A reason to be optimistic? The bigger the network the faster the innovation. The more people working on a project, the faster dead-end lines of inquiry are abandoned. One person’s findings spark an idea in someone else. We are climbing onto each other’s shoulders to reach higher and farther than any other time in history. Open exchange of ideas is spurring us ahead at an incredible rate.

Johnson even reports error is necessary for growth. This goes way back to genetic mutations. How boring the world would be if everyone were identical.

Variation through error allows for variations in thinking and even serendipitous events. Knowledge advances through errors almost just as much as it does through linear, accurate discoveries.

I appreciate people are concerned about me. I really do. I like when people want to protect me. It is a nice, warm fuzzy thing. But I am not going into this with crazy, pie-in-the-sky expectations.

My hope is to stop the progression of the disease in one eye. The phase 1 subjects got some acuity back because dying photoreceptors were revived. That would be nice.

After that I am on the 10 year plan. Vision in 10 years is my tentative goal. Might happen. Might not. I am cautiously optimistic.

Did I choose wrong with stem cells? No. There is another author my nephew recommended, Malcolm Gladwell. The book Blink by Malcolm Gladwell refers to a concept known as the adaptive unconscious. The adaptive unconscious makes decisions without conscious contemplation. It is knowing without knowing how you know. Some people call it intuition. Gladwell has discovered the collective unconscious is very frequently right. The adaptive unconscious was how I first came up with my plan.

Hold it to the scrutiny of the conscious? Of course! Looking at the pros and cons of everything – repeatedly as situations change – is necessary. After all, I am not naive ?.

Have a great day!

Love, the cockeyed optimist Continue reading “The Cockeyed Optimist”

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”

Highlight: There’s so much research out there but how can I understand a research paper if I’m not a scientist?

Great question!

One of the things I hear people say often is something like “the research on that is [pick one: interesting/great/confusing/promising]”.  Have you ever tried to read a research article that is written in a ‘scientific’ format?  When I was in college in the dark ages, I was in a field where I wrote them and read them a lot but in the years since then I didn’t need it. When it came time to start the website with Sue and share information based on research, I had a tough time. I still do with some of them (I have not yet made it all the way through the scientific paper on AREDS2). Here’s a GREAT article.

There are 11 steps & I especially like the last one: “11. FINAL STEP: (Don’t neglect doing this) What do other researchers say about this paper?”

How to Read and Understand a Scientific Paper: a Guide for Non-Scientists

UPDATED: Are there eye drops instead of injections to treat wet AMD?

The short answer to that question: not yet.  There is a major problem in developing eye drops for AMD.  One article states it as “Ophthalmic drugs have traditionally been administered topically, which in general provides therapeutic levels to the anterior (front) chamber of the eye but not to the Continue reading “UPDATED: Are there eye drops instead of injections to treat wet AMD?”

SOS

J.R.R. Tolkien said once that “false hopes are more dangerous than fears.”

Every once in a while Lin and I hear someone make a claim about AMD that we know is not true. Then someone picks up on the claim, believes a foolproof treatment or cure has been found and they have been saved from blindness. This is only to have their hopes dashed a day or two later when the truth comes out. This can be heartbreaking to watch, let alone experience.

Right now, to our best knowledge, there is no cure or available treatment for dry AMD. There are a number of treatments being tested. Even the treatments most advanced in the process are several years away from being available to the general public.

The SOS has been sent. The cavalry is coming but they are still a very long ways away. It is up to us to hold out until then.

When I talk about medical treatments, I am talking only about drugs that will slow the deterioration process. To my knowledge there are no drugs that will regrow RPEs and/or photoreceptors. The drugs will not restore sight. If you have lost your photoreceptors, at this point in time you have lost your sight.

Stem cell replacement at present is for RPEs only. Remember RPEs are only servant cells. They take care of the photoreceptors. The pizza delivery guy may help to keep the neurosurgeon alive but we would not expect him to do brain surgery. Same concept. The RPEs will feed the photoreceptors but they won’t turn light into sight. The best we can hope for is for some of the photoreceptors that are at death’s door to be revived and start working again.

Dead photoreceptors are just that, dead photoreceptors. I have geographic atrophy. Photoreceptors that should be in that area are dead and gone. There is currently no way to get them back. The last I heard they were able to grow photoreceptors but they had been unsuccessful in having them connect with the rest of the nervous system. You have a cell phone in a deadzone. Your phone works great but the signal goes nowhere.

Am I saying have no hope? Hell, no. I live on hope. Just have realistic hope. Treatment is coming. Cures are coming. Just don’t expect them next Tuesday!

Why do people get so hung up by these crazy claims? First of all, they are desperate. Any port in a storm. Beyond that I am not sure. I wasn’t able to find a lot on the mechanisms behind false hope. Maybe it is better to feel better for a little while even if you are destroyed later. Sort of like substance abuse. It felt good at the time.

We try not to deal in rumors, just facts. If we say something you do not think is true, challenge us. If you read or hear something different from what you hear here, alert us to it and we will research it. Better yet, anybody capable of web research might volunteer to help us. There is a lot of information out there.

In the meantime, keep the faith but don’t go crazy. We are not there yet.

Continue reading “SOS”

Beware Snake Oil

Happy Sunday to you! Lin and I have been emailing back and forth. Since I have another glimmer of hope about the clinical trials, we have been talking stem cells.

I am very optimistic about stem cells. I have known from the instant I saw the Wills studies on clinicaltrials.gov that it was the way I would be going.

I have not wavered in nearly a year and a half and I am not wavering now.

That said, do you remember when I talked about the three states of mind? I try very hard to stay in wise mind on this issue. Wise mind is the melding of emotional mind and reasonable mind. Emotional mind fuels but reasonable mind guides.

Going online we have noticed a lot of what I can only call testimonials to amazing new treatments. These popular press articles all talk about one person – that was one, 1, uno – person who has recovered his or her sight due to this miraculous, revolutionary new procedure, whatever it might be. To me, it seems stem cells have become the new snake oil.

OK. Now some of you just got your hackles up. Calm down. Sometimes snake oil worked. Not saying it did not. However, until it was evaluated pretty thoroughly we did not know a great deal about what it was, what it could do including harm, etc. Lots of harm has been done in the name of treatment.

For example? Blood letting. A president no one ever thinks of, Rush, was killed by bloodletting. It was an acceptable practice. I don’t imagine many of you have had blood removed to cure a disease but I am guessing you may know one person who has. Bloodletting is a proven treatment for Polycythemia Vera, a condition in which there are too many red blood cells. A treatment may have a beneficial use. We just need to find out what that use is. And we need to do it scientifically…at least in my not so humble opinion.

I am cautiously optimistic about stem cells. I have an internationally known doctor at an internationally known facility. The two studies I am signed up for are funded by large, reputable corporations. I even have the informed consent documents already!

What about you? First of all, I would like to think I could influence you to only go someplace with the credentials Wills Eye Hospital has. If that is not possible, ask questions and do your homework without committing to anything. Remember desperate people are vulnerable people. Also, even if the people you are dealing with are decent human beings, their theories or procedures could be faulty or simply not right for you.

What questions to ask? The American Speech, Language and Hearing Association – of all places – published a very nice list (with extensive links; gotta love those speech teachers!) in What to Ask When Evaluating Any Procedure, Product or Program. Read this. Take a copy with you and ask the questions. If you don’t get decent answers, turn around and walk out. Use your desperation, fears, hopes as the fuel but let your reasonable mind do the steering. Stay in wise mind on this one, guys.

Lin/Linda here:  Sue wrote this in December, 2016.  Yesterday (March 16, 2017) an article was published in the New England Journal of Medicine about 3 women who became blind after stem cell injections for which they paid $5,000 from an unnamed clinic in Florida.  The news spread fast and articles were published and widely shared by large news organizations (NPR, CNN, the major TV stations ABC, CBS, and NBC and the New York Times), by macular degeneration organizations (The Macular Degeneration Partnership, Macular Degeneration Association and The Macular Society in the UK) and by several professional organizations for those in the field of vision & eye care.

What went wrong?  This article Three people left blind by Florida clinic’s unproven stem cell therapy says it best from what I’ve read:

  • First there is almost no evidence that the fat/blood stem cell combination the clinic used could help repair the photoreceptor cells in the eye that are attacked in macular degeneration.
  • The clinic charged the women $5,000 for the procedure. Usually in FDA-approved trials the clinical trial sponsor will cover the cost of the therapy being tested.
  • Both eyes were injected at the same time. Most clinical trials would only treat one eye at a time and allow up to 30 days between patients to ensure the approach was safe.
  • Even though the treatment was listed on the clinicaltrials.gov website there is no evidence that this was part of a clinical trial, and certainly not one approved by the Food and Drug Administration (FDA) which regulates stem cell therapies.

 

Continue reading “Beware Snake Oil”

Resistance Is Futile

Sometimes I think it is a sin ‘mature’ folks – those of us of a certain age, as it were – have to jump through all the government, medical and otherwise hoops we have to jump through and other times I believe it is only the older people who have developed enough social skills and understanding to actually navigate this mess!

Case in point, the transit company had me going to school instead of the office today. The scheduler argued I had told her wrong. There was no way to prove who said what, so I just capitulated. I am not fighting a “he said – she said” battle at 6 am. Never had these problems when I drove myself! May have tried fighting with her when I was younger.

Now I take a page from the Borg – you Star Trek fans remember “Resistance is futile”. Better to hunker down and prepare for the next time.

I also continue to navigate the straits and narrows of the research organization. Having no pilot to tell me where the sand bars are, I have been pretty uneasy about getting hung up by some wrong move or wrong word.

After my friend accused me of lack of motivation, she made me promise to try calling the pharmaceutical company and see if they could shed some light on this. Fat chance. I get so tired of being given the bum’s rush by receptionist types! I am not a bum!

Since the receptionist chickie (sounded about 22) kept saying I should talk to the research facility people, I decided to set up another appointment with Regillo. This will be #3, guys.

Stubbornness can be a virtue. When it is, it uses the pseudonym persistence. I guess Someone decided to reward me because after chatting amiably with the (older than a chickie) receptionist there, I got transferred to a researcher at a different facility.

According to this lovely lady, the second study has run the first batch of subjects and is now monitoring them. The second batch goes in the early Spring. Asked who decides who gets into that second batch, she threw Regillo under the bus – metaphorically speaking, of course. My target will have to be Regillo. He is my gatekeeper.

Target identified. Phasers locked on. I now need to convince the man to move me up the list. Sigh. Never knew this lab rat business could be such hard work. And I am not even in the study yet!

A couple of secondary gains were these: I asked the researcher at the other facility to remember me if she does any dry AMD work (doing wet now) and she put the conversation in my record. A couple of hours later I got an email with an ‘official’ update. Maybe showing interest in another researcher was a good plan? Make whom you are really interested in a little less complacent?

So that is the update. Regillo in two weeks. I am thinking this may be my second level job interview. Wish me luck!

Continue reading “Resistance Is Futile”

Highlight: Is there a connection between drugs taken for osteoporosis and wet AMD?

Click here for the article “A Troubling Link Between osteoporosis Drugs and Macular Degeneration.”   There MAY be a link but this article says “Despite the finding, Dr. Etminan, a pharmacological epidemiologist in the Department of Ophthalmology and Visual Science, cautions that it’s too soon for people to stop using the drugs or to avoid taking them, because this is the first study to show a link. Other large-scale studies using other patient databases need to be done before drawing firm conclusions.”

Other Articles

Click here for article “Oral Bisphosphonate Use Poses Risk of Wet AMD”

Click here for article “Examining the Link Between Osteoporosis Drugs and AMD”

Click here for article “Bone Meds Fosamax Boniva Linked to Blinding Macular Degeneration”

 

 

 

 

Third Chakra

It seems to be motivation week. The BARD book I was able to find by the second author my nephew suggested is entitled “Drive: The Surprising Truth About What Motivates Us” (No clue. I have not downloaded it yet; it’s also available on amazon.com) Then in yoga my yogini had us concentrating on the third chakra. The third chakra is said to be concerned with a sense of purpose and self-motivation. OK. THEN I was accused of lacking motivation in seeking treatment for my AMD! Really?

I sort of get it. How many diseases can you think of that not only have no cure but no real treatment? (Wear your sunglasses and take your vitamins???? What kind of treatments are they? Where are the pills? The funny machines?)

If people cannot fathom there really is no treatment, how can they understand we are not getting treatment? Not going for treatment? Just obviously unmotivated, we are.

And then you tell them you have been waiting for over a year to get into a clinical trial and they really think you are crazy. Why have you waited that long? You just march right in there and tell them you are going to be included in this! Why aren’t you motivated to get this taken care of?

So, perhaps I have not been forceful enough.  Perhaps they just have not noticed me and they are gathering up more motivated candidates. Perhaps I have my approach all wrong.

I have been asking around and doing my research. I have a fellow yogini who works at a research hospital. Totally unrelated body part, but the ways research progresses should have parallels; right?  She is going to ask about the flow of these things. Are their trial subjects more aggressive? Does it take those researchers forever to get their stuff together and get it on the road? Inquiring minds and all that.

I also went onto that purveyor of all things known, the web and particularly Wikipedia, and looked up recruiting for clinical trials. According to dear, old wiki, the recruiting business is a billion dollar venture. Recruiting is the most time-consuming aspect of research and is responsible for the failure to meet many, many clinical trial deadlines.

All of which begs the question: why are they not calling me? I am certainly not playing hard to get!

All the other materials I turned up on clinical trial recruiting were of the same variety. Those articles talked about the problems finding people who are willing, able and appropriate for participation. While I feel their pain, my problem is the opposite. I want to understand why no one is calling me. Is there a handbook for this somewhere? What is proper etiquette for seeking a position as a lab rat? I have NEVER had this much trouble landing a job!

So, no, I am not unmotivated.  My third chakra is working just fine; thank you. I am playing a game to which I do not know the rules and I am afraid of pushing too hard. People don’t pick shrinking violets but they don’t pick prickly people either. Anybody own an old rule book for this stuff? I could use a little guidance.

Continue reading “Third Chakra”

A Biochemistry Lesson-Not!

Hey, there. After a gorgeous ‘Spring’ day, November is coming back in force and I am back in the house. It was an incredible day, though. I remembered to be grateful for it. Gratitude is a very healing skill. It is good to practice regularly.

Now that I am back in the house and not feeling like a) finishing a report for work or b) cleaning the house, I decided to look at some AMD stuff. I have a friend who finds newspaper articles with some, shall we say, non-mainstream stuff and makes me promise to read and consider it. The first article was once again about the Argus II, the bionic eye. This device is only for people with very severe vision loss as it has allowed people to again see outlines and shapes and have some functional vision. Not thinking that is for me! Not for a very long time at any rate.

The other article is about wet AMD and gut microbes. (Who makes these connections, anyway?) According to Catherine Paddock writing off an article in EMBO Molecular Medicine, they have been feeding those mice fat again. The fatty diet leads to a microbe imbalance in the gut which, after a couple of more steps, leads to chronic inflammation and the growth of blood vessels in your eyes. So there.

I don’t know enough biochemistry and medicine to follow the argument, but at least these researchers are being practical and not suggesting diet change as only one of the possible modifications (I am not giving up butter!) that may be helpful in slowing AMD progression.

They are talking about changing the microbes which would probably be a lot easier than changing me! How about you?

Although I remain committed to getting admitted to a stem cell study, I also decided to check and see what is happening in the world of pharmacology. According to Living Well With Low Vision’s February, 2016 research guide for dry AMD, MacuCLEAR is about the closest to coming to market. They were in phase 3 clinical trials but seemed to have a very small n for the study – n being the number of subjects involved. MacuCLEAR is eye drops and it is supposed to increase blood flow so those nasty blood vessels don’t need to develop and throw you into wet AMD.

That article has all sorts of studies listed. Check it out for more information.

Reading the descriptions of a lot of the drugs being tested I discovered many of them work on the ‘complement activation system’. That is complement with an e. Your body is not fishing for positive evaluations. ::grin::

So, if it’s not looking for someone to say nice things, what is it doing? According to Wikipedia the complement activation system requires an antibody and an antigen. Clear as mud so far. Read on, McDuff.

Apparently the complementary system is an old part of the immune system. It is involved with inflammation and according to Zipfel et al in The Role of Complement in AMD, AMD is actually a chronic inflammatory disease. Fancy that. Goofs in the programming of genes related to the complementary immune system lead to problems controlling inflammation and inflammation problems in the retina are related to AMD.

So that is that. When I get a biochemistry degree I can tell you more, but that is what I got now. Hope it helped. I probably should go do another load of laundry. <Sigh> Continue reading “A Biochemistry Lesson-Not!”

Best of the Best

I finished a report I absolutely had to do and thought I would go hunting clinical trials again. I am reasonably sure I have applied for what I would be interested in at Wills (although I do check periodically) so I thought I would go a little further afield.

This brought me to the question: where are the most hotshot, acclaimed eye hospitals in the nation? It turns out that question can be answered by U.S. News.

U.S.News ranks doctors in every field. They also rank hospitals. Turns out, according to their ratings under ophthalmology, Wills in Philly is number 2! Try harder, guys!

Number 1 is Bascom Palmer Eye Institute in Miami. They are recruiting for a study on ‘photothermal therapy’ (no clue…yet), ALK-001 for Stargardt disease and also some anti-VEGF treatment for diabetic retinopathy. Bascom-Palmer listed very few clinical trials but one of them might be for you. If you are a Floridian, check it out.

Going geographically, #3 is my next closest option. That is the Wilmer Eye Institute in Baltimore. Wilmer is part of Johns-Hopkins. Wilmer is running the same ALK-001 study as well as some stuff on oxidation stress. Unfortunately, they did not have anything I was interested in. Back to the search!

Mass. General’s Eye and Ear Infirmary in Boston came in #4. Not a realistic commute for me. Neither are UCLA Medical Center or Duke University Hospital. That is Durham, North Carolina, by the way.

#7 is in Iowa City and affiliated with the U. of Iowa. #8 is Cleveland Clinic. #9 is W.K. Kellogg Center in Michigan and #10 is in the Big Apple. The New York Eye and Ear Infirmary to be precise.

New York did not have anything that enticed me. At least not in the way of clinical trials. They are recruiting for a numbers of studies for those with wet AMD. If you go there, take some time and see a play for me. Or go to the Metropolitan Museum of Art. These may be touristy things to do, but I have always enjoyed them.

The search of 9 of the 10, best hospitals yielding nothing, I went back to check Wills. I got a scare there. I had to search for my second study (Remember my first option is back to using real rats and is no longer recruiting). It turned out ‘my’ study was listed 293 out of 363 studies. Thank goodness it was listed as recruiting with a current date. There seems to still be hope!

It appears whatever Fates are moving me, they are still pushing me towards Wills. So far that is my clinical study destination, if anywhere at all (and we all know how stubborn I am so it will be somewhere). Hopefully I mention a great hospital that may be an option for you. Good hunting! Continue reading “Best of the Best”

I Am Not a Doctor

Commentary: Lin just sent me a post from someone in the Facebook group. She asked for my reactions. The person is claiming he completely reversed neovascular (wet) AMD with nutritional treatments. Here goes.

First the disclaimer. I am not a doctor. I am not a nutritionist. I am a woman with dry AMD who has tried to educate herself about her disorder. Therefore I do not, by any stretch of the imagination, have all of the answers. End of disclaimer.

That said, let me congratulate him on his greatly improved vision! I am glad he are doing well.

I know some of what he says is true. In general the diets of those in the developed world are atrocious. We should be eating many more fruits and vegetables, especially our leafy greens, than we do. The reason taking the AREDS/AREDS2 supplement works to slow the progression of the disease is probably our poor diets. If we ate well, the supplements would not be so needed. [Lin/Linda: I have to mention that there is some risk taking the AREDS or AREDS2 with 80mg zinc.  It can cause problems in the genitourinary tract but there is evidence that for people with certain genes, that high dose of zinc can cause their AMD to progress faster. Since not everyone has easy access to the genetic tests, there are supplements with no zinc or less zinc.  Check out this post for more information.]

Angiogenesis is the growth of new blood vessels. This is a hallmark of wet AMD. There is some evidence angiogenesis is part of the healing process and may be triggered by inflammation (Reiner O. Schlingemann in Role of Growth Factors and the Wound Healing Response in Age-Related Macular Degeneration). There is also evidence that retinal hypoxia (in English? Your retina is gasping for oxygen) is a trigger for angiogenesis and neovascular (wet) AMD. (Citation same guy. It is so nice not to have to follow APA format? [Lin/Linda: APA is the American Psychological Association and when you write something for them, you need to follow a very strict format for references to articles.]

That said, theoretically it is possible he hit upon a combination of nutrients that would reduce inflammation and increase oxygenation to his retina, thus somehow stopping the angiogenesis. Did this happen? No clue. I am just sort of a slightly-too-smart-for-my-own-good, visually impaired lady. (Gets me in a lot of trouble.) Is it possible? Sure. “There are more things in heaven and earth, Horatio, than are dreamt of in your philosophies.” (That is the bard, of course).

Now, it would be my supposition – again totally unfounded – he was not in advanced AMD and had not experienced much if any photoreceptor death i.e. geographic atrophy. Unfortunately from what I have been told dead is dead with those. They would not have come back.

That is pretty much my take on it. Again when it comes down to it, I know nothing but I have a helluva lot of opinions. Don’t believe me. Offer your opinions. What do you folks think? Continue reading “I Am Not a Doctor”

Illegal, Immoral or Fattening

Everything I like is either illegal, immoral or fattening.

Hold that thought. I will get back to it.

One of the problems with living in a social world and having a progressive disease is we worry people. We worry people a lot. My friend with whom I walk and kayak was very distressed when I told her my eyes were deteriorating. Yes, I know it is going faster than anticipated. Sorry. Sorry. Mea culpa. This is not exactly my idea of a good time either.

Everyone wants to help and everyone has a theory as to what to do. I try to take it in the spirit it was intended. Being nagged is a sign of love and worry and generally happens (at least in my unsubstantiated opinion) when there is little else they can do.

After all, it is not like they can circulate a petition and get me cured!

Anyway, this friend’s answer to my problem is statins. Leave it to the exercise fiend to want to attack the fat! She has seen the latest study covered in magazines and newspapers and she has decided I need to sign up for a clinical trial with statins. Oh, my…

I promised I would contact them. And I will, I really will, but first I got the journal article on their phase 1 trial. That was interesting reading.

Regression of Some High-risk Features of Age-related Macular Degeneration (AMD) in Patients Receiving Intensive Statin Treatment made me wonder several things. First of all, why are these titles all so long? Second thing: are there really over 100 genes that contribute to the development of AMD? Third thing: are there really several different ‘types’ of AMD? If there are – and they say there are – it makes sense there has been no quick, one-size-fits-all answer.

The reason they stressed all the different ways you can develop AMD as well as the different varieties of AMD was to highlight the fact statins may not work as well with all forms of AMD. Their study focused on people with multiple, large, soft drusen. Remember the drusen are the piles of fatty ‘eye poop’ that are not getting cleaned up and therefore interfere with the care and feeding of the photoreceptors. The thought was if statins can clean the fat out of your arteries, they can clean it out of your eyes. At least some eyes.

The reason the researchers thought statins might be able to help was based at least in part on mouse research. Mice fed a high fat diet showed changes similar to human aging and development of AMD. Given statins, they improved.

Which brings me back to my original point. Everything I like is either illegal, immoral or fattening. Now I have to add it is bad for my eyes! Fat – what is life without butter? Or bacon? Or a nicely marbled cut of meat? What is this world coming to if butter can make you blind? ??

Fortunately that last, little part has not been proven. I also think I would persist in my bad habits (Gives brand new meaning to “Can I do it until I need glasses?”; doesn’t it?).

So, quick recap: there is some evidence statins can remove large, soft drusen. The article sounded as if their procedure would be most promising for people in the early stages of the disease as well. If this describes you, you might want to check it out. Continue reading “Illegal, Immoral or Fattening”

Four Letter Words

Back from the medical center. I saw my general practitioner and my local ophthalmologist/ retina specialist.

The campaign is escalating! My ophthalmologist is going to write a letter to the research team!

Very glad he is putting his two cents in. Although I amazed myself on the ‘letter guessing game’ I am well aware my vision is deteriorating. This is a foot race and so far AMD is taking the lead.

Letter guessing game? You know…”the second one is tall and goes off to the right. An F? The third one is round. An O? No. It is a D!” Anyone else know that game?

I asked the good doctor about the insertion method for the stem cells in the new study. He is thinking the use a flexible catheter and going in behind the macula. He talked about the suprachoroidal space.

Here we go again. When I was diagnosed with AMD I never thought it would turn into continuous course of study. Still, better to know. Knowledge is power. Continuing on: Suprachoroidal space; you ask?

eye-profile
http://clearsidebio.com/suprachoroidal-spacescs/

According to E. Moisseiev and some other good folk at USC Davis and Tel Aviv University (2015) the suprachoroidal space is a space between the choroid and the sclera. It has been considered as a possible delivery pathway for drug therapy to the eye for some time. This space develops in 50% of people over 50. It is obviously more complicated but the theory is things get leaky in us older folks and the fluids other parts of the eye are dripping collect there.

According to the good folks writing the article, 20 to 50% of people with AMD have suprachoroidal spaces, fluid accumulating because the eye pipes leaked.

Sort of low odds. I have no idea how they check for leaky eye pipes but I might be happy to have them find some if it gets me into the study!

Another reason for thinking the suprachoroidal space would be available for drug delivery in AMD patients is that the chances of finding it increase in people with choroidal thinning. Don’t look now but people with AMD also have choroidal thinning! Is there any end to all of the good news?!?

On the positive side, injecting drugs into the suprachoroidal spaces that many of us have developed can avoid a lot of the problems we presently experience with current administration methods. Remember how I noticed the new study has no requirement for a vitrectomy, for example? No vitrectomy would mean greatly reduced chance of developing a cataract. Not to mention the chance of infection from going through the front of the eye. Better to keep the integrity of the inside of the eye as intact as possible.

Looking at the informed disclosure sheets, I noticed the research people intend to inject the stem cells into a bleb under the macula. Bleb?

According to Wikipedia, a bleb is a blister filled with fluid. OK? Who said we are too old to learn any new four-letter words?!??

So enough for one day. You will hear me screaming from the rooftops if anything actually happens on the research front. Until then, gotta keep on keeping on. Continue reading “Four Letter Words”

Salmagundi

This thing is another salmagundi, which is a word for a mixed up affair. I am trying to find synonyms. Improve your word power. Reader’s Digest would be proud!

Going back in time…another reason I miss my car: it had a nice size hatch space and I kept a lot of work materials back there. I just spent a good half an hour looking for a test I have not used in a while. Looked three places.

If I still had the Psychmobile, I would have only had to look one place. Acceptance and change. What a pain they can be.

Fell asleep and napped early last evening. That meant I was awake at midnight. There was a screech owl calling his little heart out somewhere close. I have heard barred owls, too. They remind me not only that I love the out-of-doors but that I have other senses to enjoy it with. Listen. They are out there.

And really going off course, you should get a load of the flock of starlings that has taken up residence in our trees. There are thousands of them! It took nearly two minutes for the flock to pass the window. As my husband said: it was positively Hitchcockian! ??

Trying to get back on track here….

Before listening to the owl, I was reading the informed consent for the new study I am pursuing. Poor researchers. They might be getting an idea what they are in for. I am nothing if I am not persistent.

When I was a kid, my mother would tell me to do what I wanted because I would find a way to do it anyway.

Anyway, the study. It is listed in clinical trials online. The number is NCT 02659098. Take a look at it. The first study I was interested in – and am still interested in as plan B – required weeks of immunosuppressants and a vitrectomy. This one requires neither. It sounds less invasive and as if it won’t have such a potential impact on my health. Those are good things. It also will require involvement in the study for a longer time but fewer visits into Philly. That is also a good thing.

Another thing I noticed? While the other study was measuring the effectiveness of the immunosuppressants they were using, this one has outcome goals of visual acuity and reading speed. In other words, they are going for stuff that really matters to your ever lovin’ truly.

What they are also looking at is how well a new delivery system will work. What I found was – I think – the patent and that was in engineering-ese. I understood about every third word, ‘the’, ‘a’, ‘and’. Words like that. Lin is trying to find something that will actually say something we can make sense out of. I would like to see what the delivery system is all about. [Lin/Linda here: I cannot find out anything about the specific delivery system.  There is a study going on now that is testing it.]

So there you have it for this page. Going off in a new direct but still the cockeyed optimist about this whole mess. There will be answers.

Continue reading “Salmagundi”

Opening a Window

I am hoping that when God closes a door he opens a window.

After finding out the researcher I had been dealing with had left, I called the institution and sort of felt I got the bum’s rush: don’t call us; we will call you. Research to start in a few months. Oh, yeah?

Thank goodness I am the persistent sort. (Who? Me?) I was not feeling quite right about the situation and called again today. I talked to a lovely young lady who informed me everything with the stem cell research has sort of fallen apart! ‘Reworking’ the stem cell line apparently did not mean just changing a few small things. It meant changing the entire protocol!

Changing the entire protocol is essentially going back to step 1. The staff needs to be trained in the new standard procedure. Then the research goes back to pre-clinical trials. That means they are back to real rats for lab rats! Clinical trials, those that use rats who stand on two legs, won’t start for over a year, maybe two. Yippee skippee.

Since I know we are all highly responsive and adaptable people, I am sure you would have done what I did. Precisely? Bitch about being given the wrong info and start looking for plan B. Going blind here. We need to move a lot faster than this. What else is available?

Turns out they have a study in progress. It does pay to inquire; doesn’t it? The study is also phase 2. Remember phase 2 is one step above safety and tolerability. That is the stage in which they see if you will survive and, if you do, will anything really weird or harmful happen to you. Stage 2 measures if anything actually happens with the treatment. Is there a discernible effect?

This study uses adult stem cells. There is a nice blurb on the phase 1 trials that Lin found for me. It is through the Macular Degeneration Partnership and is titled Adult Stem Cell Therapy for Dry AMD. The 33 people they used in phase 1 had some very nice results.

I asked the research staff to see if Regillo would refer me for this study. I got my answer less than five minutes later. Either he does not remember me at all and is just collecting warm bodies or I made an impression ?.

Be that as it may be, I got the ‘informed consent’ packet so I can read exactly what the protocol for this study is. Find out what I need to know.

I am hoping things move quickly. I have been waiting for some movement for over a year now and the longer I wait, the worse my vision becomes. You folks know how that goes.

So, hoping for a window to open soon. Even if it’s an attic window. I will find a ladder! Time to get moving on this treatment thing. Continue reading “Opening a Window”

You’ve Got the Look

Fast forward to the next evening. I have finished reading Enhancing Visual Performance for People with Central Vision Loss by Susana Chung. It took me a while because since I have been losing my vision my reading speed is slow.

The research Dr. Chung did tells us why. It sheds some light on the rest of this mess, too.

Remember when we talked about eccentric viewing? That is looking at things off-center. It is using the peripheral retina, as opposed to the macula, to do our seeing. I knew the peripheral retina is not specialized for detail like the macula but I found out the finest detail the peripheral retina can see is four times larger (at 10 degrees from center) than what the macula can see.

That means we are sort of using a sledgehammer to do the job of a jeweler’s hammer when we try to use the peripheral retina to read. It is rather a blunt instrument!

I also found out if you are using a part of your retina 20 degrees of arc from your macular to read, you are, on average, reading six times more slowly than people who can still use their maculas! No wonder reading can take forever!

Another problem is eye movement control. Your eyes are made to line up the macula with what you are looking at, not to line up some random chunk of peripheral retina. The macula is sort of the sights on your ‘gun’. it wasn’t made to be held sideways and shot no matter what those gangsta movies suggest. It is not natural.

It is possible to improve reading skill and speed through magnification but that only works to a certain extent. Once print size gets too big, you start to have diminishing returns.

Dr. Chung messed around with several, different variables and really did not find anything that had an effect on reading speed in people with central vision loss until she started to study visual span. Visual span is how much information you can take in. It is sort of how wide your ‘look’ is. Most ‘looks’ that happen at the macula take in between 7 and 11 characters. If you are trying to use your peripheral vision 10 degrees of arc away from the macula your ‘look’ can take in about 5 characters at a time. Do the math. That is about half as much information.

Researchers have discovered there is a relationship between visual span, or how much info you can take in in one look, and reading speed. Increased visual spans should therefore lead to increased reading speeds. Perceptual learning – and another study I found – say it should be possible to train someone to widen his visual span and therefore increase his reading speed.

Revealing the actual way to do this is going to have to wait though. The journal article I have is over 20 pages and my reading is a little slow! ? Catch up with me later. Continue reading “You’ve Got the Look”

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