My New Career?

Not to belabor a point, but today did start as a rather poopy day. We had our first snow overnight. Just a couple of inches but it was the puppygirls’ first snow. My theory is this: when they went out and squatted to poop, they got cold, wet bottoms. Go inside and poop? No cold, wet bottom. Problem solved!

Of course, since my husband was first on scene and got to clean it up, he was NOT a happy camper. Not a good start to the day.

Then there was the snow itself. Getting to my eye appointment is a 90 mile trip one way. My husband does not like city driving and he does not like driving in the snow. Once more he was not a happy camper.

It is hard to explain to some people why we have been dutifully driving 90 miles one way, every six months just to be told my eyes are worse. “Please pay your copay.” For those kind of results, I could go five miles down the road!

However, it is all part of a master plan. I have real problems with defeat. Real problem being told there is no answer. If you cannot supply me with an answer, I will find someone who can!

So here I am, running to see Regillo every six months for the past two years….and I think I am getting closer!

First the good news/bad news. Or, in this case, bad news/good news. Although I find it hard to believe, I have fallen down below 20/400 acuity. Bizarre because I don’t feel blind and don’t think I function as a blind woman.. After all, I got the “you don’t look blind!” routine just last month.

However, the good news on that is my vision is now so bad, I can satisfy the truly awful vision requirement for the Astellas’ study that is supposed to launch in March! Regillo referred me again. Is this time four or time five? I have sincerely lost count. [Lin/Linda: I put the details to that study in Sue’s page The Waiting Game.]

He has also put me on the list for APL-2 which is supposed to go into phase 3 clinicals sometime in 2018. He started to offer me “something else” when we were talking about lamp stuff (which is apparently very dead in the water) and I surprised him by knowing exactly where he was going. Working on being memorable. I want my name at the top of the list. [Lin/Linda: Sue wrote about APL-2 in her page My Friend in Manila?]

Also thinking I may be getting closer because I got a new test today. They ran me on the autofluorescence test. This test uses a very bright light. When the image is examined, the areas of the macula that are already dead are black and the areas that are in distress shine. My eye probably lit up like a Christmas tree. If that gets me into a study and gets this stuff stopped? Good.

So, that is where we are. I got a new test. I chose to be hopeful it means they want more information for my new career as a lab rat! Regillo generally seemed positive. Maybe I will be going to Philadelphia.

Written Dec. 14th, 2017 Continue reading “My New Career?”

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I Tried My Best

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

I am responsible but I am not crazy.

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

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

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

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

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

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

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

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

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

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

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Diffy Cults

Just getting a quick page or two written before I am off. That is off as in off on vacation not as in “she is a little bit off.” That happened quite a while ago.?

Still hoping to get my loaner CCTV before we leave but I doubt it will happened. A friend of my husband’s is watching the house. He promised to take delivery and pack up my machine to send for repairs.

I am still hoping against logic that this will all be settled by the time we get back. Cockeyed optimist; so shoot me.

Of course, I have found several interesting web articles now I don’t have a lot of time to go over them and no CCTV. Since I don’t have my machine to put them on to read, I put one on NaturalReader. Let the iPad read to me. [Lin/Linda: to read all about NaturalReader, go to Sue’s page Let Me Read to You.]

Some of the pronunciations are a bit ‘off’ as well. D.O., doctor of optometry, comes out as ‘odd’. I guess she calls them as she sees ’em!? She? It is a female voice on my machine. Not sure if I could change it if I wanted. Never tried.

Found something called Practical Guidelines for Treatment of AMD. The pamphlet says with all of the rapid advances in potential treatments for AMD it makes it “diffy cult” for practitioners to know what will be “Benny Fish All” to their patients.? Gotta watch those “diffy cults”. Not to mention that Benny Fish All. OK, OK, so I am easily entertained.

The article suggests doctors are not proactive enough in the early stages of the disease. It suggested something like 78% of AMD patients have substantial, irreversible vision loss already at the time of the first treatment. This includes 37% who have become legally blind by the first treatment. Yikes! It goes on to state not all drusen are a result of AMD and doctors may hesitate to make the diagnosis on the criteria of drusen alone. There is also the patient variable involved. Will the patient believe she is losing her sight and do something if there is no acuity loss? Will she freak? Stay tuned….

The article suggests using dark adaptation problems to emphasize there is a real problem even when acuity seems just fine. It quotes statistics dark adaptation is an excellent predictor of age-related macular degeneration and is, indeed, 90% accurate!

In other words, if you know someone who has a lot of problems with dark adaptation, suggest they be checked for AMD. There is evidence problems with dark adaptation can be detected up to three years before the disease can be detected through clinical measures.

Later….There is a lot more in that article, but I have to sign off here. Too much over 500 words and I turn into a pumpkin. Watch out for those “Diffy Cults” and if you run into “Benny Fish All” say hello for me. After all, he is the kind sort. Me, I’m going to crank up my loaner CCTV. It came today!

Written October 27th, 2017 Continue reading “Diffy Cults”

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Progress Daily

I really cannot win with this transportation business. Now they are on a string of late pick-ups and I am waltzing in 45 minutes after everyone else. Grrrrrrrrrr!

Oh well, can’t fix it. Time to start a page…..and as soon as I am into it, they will show up. Same concept as going to the bathroom in the restaurant to ‘make’ your meal arrive faster.  Aha! Recognition! You have done that, too!

PRELUDE, the study, is NCT02659098. I checked and this is the same study I put my name in for last year. I just shot off a message to my research contact and asked her to make sure my ‘registration’ is still good. I am nothing if I am not persistent. Sad to say it is one of my better traits (oh no!)

There are actually two, main measurable outcomes they are interested in. There are the efficacy of the delivery system and best corrected acuity after administration of the stem cells. In the clinicaltrials.gov post they refer to the stem cells as CNTO 2476. In other literature they named the stem cells Palucorcel.  I guess it is better than George (with apologies to the royal family. I have never liked the name George, although the little guy is a cutie!) Of course, Palucorcel does not exactly fall trippingly off the tongue.

Anyway, according to a one page write-up by Jessica Lynch, previous attempts to circumvent the vitreous and go in subretinally caused too many problems. They are, as I had been led to believe previously, trying to go around to the macula using the suprachoroidal space as their passage. (Anyone ever see Fantastic Voyage? I keep thinking how incredible it would be to jump in my microscopic submarine and motor through the suprachoroidal space!) After preclinical trials with mini pigs were successful, they launched into prime time with a phase 1 trial with people. As I said, they are now recruiting for phase 2. [Sue wrote about subretinal and suprachoroidal are in the previous page: Secret Passages in the Eyeball

Looking at the additional data on clinical trials.gov I discovered there are secondary outcomes for the study. They will be looking at quality of life and reading speed as well as whether the stem cell transplants slow or even stop the growth of the geographic atrophy. They are also looking at how many people convert to wet AMD. It sounds as if this study would be a long term commitment for the ‘lab rats’ chosen.

Going back to the Medscape article about phase 1, I discovered they had pretty good success threading through the space and the transplanted cells grew and started to function.

Cell placement was important. They used the microperimetry to figure out what retinal areas the subjects were using for eccentric viewing. Too close and that could be messed up. Cell placement other places was better.

Results? The subjects had some improvement in vision. That was SOME. Before you get too excited, remember this is RPE replacement. RPEs do not see. They support your photoreceptors. Some of the photoreceptors that are at death’s door may come back but the dead ones stay dead.

I did run off the journal write-up on phase 1 and I promise to tackle it and see if there were any other cool findings. Later. Right now I have laundry to sort. Maybe listen to an NCIS episode. It is now playing all the way through on my tablet!  What can I say? It really is the little things.

Progress daily, guys. Progress daily. We will get there.

written October 17th, 2017 Continue reading “Progress Daily”

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Secret Passages in the Eyeball

Back again. Chatty sort, ain’t I? ? I really thought I was done for awhile but I keep finding things; ya know? If (should I even use the word ‘if’?) you are tired of hearing me chatter, please write a page! We are anxious for more offerings. [Lin/Linda: if you haven’t read the pages by our guest authors, click here to see what we are talking about.]

Back to the topic at hand (I am not only chatty, but I go off on tangents, a lot of tangents??☝ ) the most recent thing to land in my inbox is a Medscape article Lin sent me. We are back to the stem cell research!

This article uses a lot of the concepts and vocabulary we have introduced over the months. I will review as we go along – I don’t remember it all myself! – and Lin might help us out with some links to previous pages. Pretty please and thank you.  [I think the best place to learn about stem cells is a short YouTube video.   Also, check out Sue’s early page Research.]

I am signed up for a Janssen Pharmaceutical study with stem cells. Guess who did this study? Do you ever feel LEFT OUT? Once again, I would love to know how to get on the A list for these things. Not sure all the places the study happened, though. One place was Kentucky. Maybe I was a ‘geographic undesirable’? I will have to do a little research after hip hop. (Some things do take precedence!?)

OK. Here we go. I looked up PRELUDE, etc and got routed to Clinical trials.gov. It is only going into phase 2 but the good news is they are recruiting. The better news is they are recruiting at Mid Atlantic Retina, Regillo’s place. Now I am getting stoked. “Watson!…The game is afoot!”

Shoot off an email later and get ready to accost Regillo when I see him in December. One other person who is only starting to realize the depths of my tenacity! (Cue Vincent Price laughter!)

OK. Enough nonsense….for now?. From the looks of things, PRELUDE was a study checking, for at least one thing, the feasibility of a delivery system. If you recall, we talked about ways of delivering stem cells to the back of the eye where they belong before. No just shooting them into the vitreous fluid where they roll around like loose cannon balls and end up who knows where. No, no, no! They must be placed. The way they are placed is to thread them through the subretinal space.

Now I am thinking the suprachoroidal space and the subretinal space are the same thing but I really don’t know. [The title of the article I linked to above is “Subretinal Delivery of Cells via the Suprachoroidal Space: Janssen Trial”.] How many ‘secret passages’ can an eyeball have? Be that as it may, the whole idea is to snake through this space (or spaces?) and get to the back of the eyeball without violating the integrity of the vitreous and opening it to infection.

The progress of the implanted cells in this study was checked with microperimetry. This appears to be an up and coming imagining technique we also talked about. It is a technique that tests which parts of the retina are working and how well they are actually working.

Which brings me to my word limit and bedtime. I have been to hip hop and back and need to take a bath and get ready for bed.

I did find what I think is the original journal article for this as well as the clinicaltrials.gov listing. I will follow up….tomorrow.

written October 16th, 2017 Continue reading “Secret Passages in the Eyeball”

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Eye Poop Reduction

Looking for information on therapies that slow the vision cycle. Got all sorts of things on slowing traffic for safer cycling.

While I am all for fewer car/bicycle accidents, that is not exactly what I had in mind!

Back to Wikipedia, I discovered the visual cycle is the process through which light is transformed into electrical signals. If you have a penchant for chemistry, I refer you to the Wikipedia article. Social scientist here! As far as I am concerned…then there is magic!

Part of this magic includes having three different types of cone cells that respond to three, different wavelengths of light. By taking stock of the strength and blending of the stimuli from these three, types of cone cells, we are able to see color! Cool! Although my guess would have been the primary colors, the colors they detect are actually red, blue and green. Why? Dunno. Magic.

But back on track, visual cycle…

Since the job of RPEs is not only to feed the photoreceptors but also to clean up after them, RPEs have to be able to tolerate a lot of…uh, poop. (Gee, maybe I am just a big RPE! I feel like I deal with that stuff all the time!) When there is too much poop for them to handle, we get, among other problems, drusen.

Janet Sparrow in Therapy for Macular Degeneration: Insight from Acne (catchy title?) said “it is the responsibility of the RPE to internalize the membranous debris discharged daily by the photoreceptor cell.” In other words, they eat eye poop. Unfortunately, some of the molecules in the poop are toxic (as if eating eye poop was not bad enough) and not at all good for the RPEs or surrounding cells.

The theory goes something like this: Less eye poop would make life easier for the RPEs. While we cannot get rid of all the eye poop – after all it is a byproduct of what we want: sight – maybe we can reduce the volume of how much poop we actually have to deal with. If we slow down the chemical processes involved in sight maybe we can produce less poop and thus see for a longer period of time.

They are checking out that theory right now. Foundation Fighting Blindness (FFB) advertised for subjects for a phase 2 (proof of concept) clinical trial of ACU-4429, a “visual cycle modulator”. For our purposes, read “eye poop reduction strategy”.

FFB also published a one page blurb about Fenretinide. Fenretinide has successfully completed phase 2 clinical trials and is on the way to phase 3. They are hopeful it will slow down the visual cycle in those with dry AMD. The slowing should lead to fewer lesions in dry AMD and fewer cases of wet AMD.

Oh, and that chemistry I referred to earlier? I might actually have to understand some of it. Oy. In the visual cycle there is a pigment-y sort of thing called 11-cis. Helping the light signal along its way to become sight causes a chemical change in the 11-cis. In order to get changed back to its original form so it can do its job again and not contribute to the eye poop problem, 11-cis needs help from several molecules, one of which is REP65. REP65. Remember that name. It may be an up-and comer.

written October 14th, 2017 Continue reading “Eye Poop Reduction”

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Let It Be

Onward into massive confusion! I may not have the brains to understand this stuff but I make up for it in pure, dogged tenacity.

I looked up peripheral retina atrophy and discovered Eyewiki considers atrophic retinal holes to be full-thickness, retinal breaks generally occurring in the peripheral retina. They are not caused by vitreous adhesions like macular holes. Remember macular holes are caused when the ‘strings’ in the vitreous latch on and tug. The cause for the death of these parts of the peripheral retina is thought to be a failure of blood supply and not drusen or any of the complement factor SNAFUS we may experience in AMD.

So that is one thing I found suggesting peripheral retina atrophy and AMD are not related. HOWEVER, I also found an article suggesting they are and AMD might not be just for maculas any more. Just to make everything more delightful, Ophthalmology in April, 2017 published a study about peripheral retinal changes associated with AMD. (One of the authors for this study was Chew, EY! Beastie Baby would have approved!) Their conclusions were these: peripheral eye changes are more prevalent in eyes with AMD. These changes can be mid-range and/or far periphery of the retina. They decided AMD may be a full eye condition and suggested further study.

Another study done in Croatia and published online in Ophthalmology Retina September 22, 2017 found peripheral drusen, reticular pigment changes and paving stone degeneration occurred more often in those with AMD than in controls. Paving stone degeneration is constituted by small, discrete, rounded areas of loss of pigment and thinning of the retina.

In my limited research nothing said that AMD leads to full retina deterioration. My local retinologist did not say that was the case either.

I am not a doctor and I am groping for answers just like you. Don’t believe a word I say. That said, to clean up the saying a bit, opinions are like tushies. Everyone has one.

This is mine on this topic: Peripheral atrophy and geographic atrophy are probably not the same ‘animal’. There may be some, common underlying mechanism but we don’t know what it is yet. When I was talking to my local doctor he mentioned what might have been the presence of peripheral retinal atrophy in some of the same people who had AMD. Just because they are both present does not mean causality one for the other. He also said he had seen it only rarely and in the very old. Having seen even one case, he was not going to make me any promises things would not go from bad to worse.

Now to my soapbox. I have more than enough to worry about with my macular degeneration and I expect you do too. I am not going to buy trouble. I could waste every minute of every day worrying about a bunch of what-ifs. I have better things to do with my time. I suspect you do, too.

Let it be….
Paul McCartney, 1970

written October 7th, 2017

Continue reading “Let It Be”

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