Geez, It’s Dark in Here!

Back again. I don’t want to scrub the floor or score a test, soooo….a page!😁

Still checking out short blurbs from Modern Retina. Rosenfeld reported that low-luminance visual acuity deficits are predictive of the rate of geographic atrophy (GA) progression. Low-luminance visual acuity is basically night vision.

Following up on this I discovered that back in 2008 Janet Sunness found GA patients who reported poor night vision were much more likely to go legally blind than their GA peers who could see better at night. These people made up the quarter of their GA patients (visual acuity of 20/50 or better) who became legally blind within four years.

I believe them but still have a couple of questions. Recovery time from being ‘blinded’ by bright light is forever for me. Leave me there and come back in an hour.

Night vision is not bad. I prefer to walk without a flashlight because I see better to navigate. How can that be considering I am one of those who became legally blind?

The study measured night vision by seeing how much could be read in low light conditions. Reading in low light, I am not so good. Maybe that is the difference.

Anyway, if you cannot afford a lot of fancy testing, seeing how much you can read at dusk may give you some idea of how bad things are going to get. Just what we want to know; right? How bad things can really be.

And in other news, inflammation remains a target for the AMD researchers. Lampalizumab, aka ‘lamp stuff’, blocks complementary factor D to help control the alternative complement pathway (that thing again!) and reduce retinal inflammation. ‘Lamp stuff’ is said to work with carriers of the complement factor I at risk allele. Considering​ Regillo wants to start poking needles in my eyes come 2018, I cannot help but wonder if I actually have that gene. I would hate to be poked in the eye every month to no good end.

Maybe I would rather use POT. 😋That’s POT 4. POT4, aka APL 2, blocks all three pathways of complement action at the same time. They are looking to develop an intravitreous shot that would be very long-term. None of this four to six weeks business.

And talking about shots, I just lost the article somewhere in this mess (not domestic goddess material; remember?) but I also read a short article taking about a new, medication delivery system they are working on in the UK. This team has been working on developing a little, bitty molecule that can permeate the layers of the eye and deliver medication to the retina through daily eye drops and not monthly shots. Not only will the people getting the shots approve, but the NHS (National Health Service) will approve because it will cut the number of office visits way down. Save money. Ka ching! [Lin/Linda: never fear, I found the article, click here.]

So there you have a review of some of the articles I pulled off of Modern Retina. They have lots in the works. Some of it is promising and some proves not to be, but they are zeroing in on treatments (plural because with a condition caused by multiple genes I believe there will be multiple avenues of attack). We are getting closer to answers. There is hope. Continue reading “Geez, It’s Dark in Here!”

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BIG News!

Woke up with a start at 2 am last night. Probably several things.

First thing that happened was a call from one of my contracts. She had called my third place of employment to schedule an evaluation and was told I did not work there anymore!

News to me! Now, I don’t get there a lot but the plan was for me to go and do a case or two when called. Maybe something like once every six weeks or so. I was never told I was being fired!

Of course it turns out someone got something wrong but it did get me to thinking. Once again, how does one graciously bow out or – hopefully equally graciously – be shown the door? Inquiring minds.

The second thing that has me a little anxious is my big ‘field trip’ tomorrow. I am going to do some sightseeing on Manhattan with an acquaintance from school. First time that far away from home without my husband since my sight loss. I know it can be done, but it is still a little scary.

Third thing: I saw Regillo yesterday. My eyes are getting worse slowly. (I am not so sure about the slowly part!) He confirmed scotomata (aka blind spots) get darker but did not necessarily say they go black. He said that he would not expect a central vision loss to cover 60 degrees of arc. That wide a loss would be ‘extreme’. Those two answers at least get us slightly closer to settling two of my burning questions from this Spring.

The big news, though, is he wants to try me on lampalizumab next winter. It appears the phase 3 clinicals are going to wind down by the end of the year and phase 4 trials will be starting.

People, the numbers of subjects in phase 4 trials is BIG. HUGE! Phase 4 trials take place after the FDA approved the marketing of a new drug. The drug is made available to the public through local physicians. They look for effects and side effects in diverse populations.

What this means for you is simply this: the first actual TREATMENT for geographic atrophy may only be six months away! This is the first breakthrough!

Lampalizumab is an injectible drug. It has been proven to slow the progression of geographic atrophy and to “reduce the area of geographic atrophy” by 20%. Dosing occurs monthly or every six weeks.

Will I do it? Probably. I really believe stem cell replacement of RPEs is the way for me to go, but it is taking forever and I don’t have time for forever. Lampalizumab can be administered locally and would avoid lots of trips to Philly. I don’t like the idea of intravenous injections but I don’t like the idea of a vitrectomy either! A 20% decrease in disease progression might win me enough time (and macula!) to have a more successful intervention later.

If you have dry AMD and geographic atrophy, it might be worth your while to broach the subject of lampalizumab with your retinologist. Let him know you are interested. This could just be the start of something big for all of us.😁

Continue reading “BIG News!”

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Mi Depression, Su Depression

We all know adjusting to sight loss is stressful. We are well aware of the times it has freaked us out but how aware are we of the impact our loss has on those around us? How often does anyone notice the stress on family members ?

Back in 2009 – that is 8 years ago, guys. Long enough this report could be in the third grade! – there was published an article entitled Family Function and Low Vision: A Systematic Review. The authors lamented they had not had many appropriate articles to review and – guess what – I found pretty much next to nothing since then. Families of the visually impaired are being ignored!

But yet families are a huge support to those who are losing their sight. Adequate support – both practical and emotional – protects against distress and other negative health concerns. The way we stay functional and sane is by having people there for us.

The problem is sometimes family members go through all of the stages of adjustment we do. Shock, denial and mourning are not just for us. But since we are the identified clients, we (hopefully) get the services and the attention. They don’t.

Visual impairment is related to separation and divorce. (Or at least it was in 1993. THAT study is old enough to vote.) There have also been more recent studies on emotion contagion.

Yep, mi depression, su depression*. And if that is not bad enough, the spouses of the visually impaired even have worse physical well-being than controls. Jeez.

The suggestions from the authors were pretty basic: education and mental health counseling. Family members need to know about visual impairment so they know how and how much to help. Overprotection can be nearly as damaging as neglect. Mental health support is pretty self-explanatory. Find and investigate the negative belief systems and see what you can do to refute them. Provide emotional support.

In short, the fight can be as hard on the guy who holds your coat as it is on you. Family members need to know about your vision loss and be told the level of support you need. They need to have time to do things for themselves and they need someone to support them as well. None of this is easy on anybody but it is easier when we do it together.

*translation of title is “My Depression, Your Depression” as in the phrase “Mi Casa, Su Casa” which literally translated means “My House, Your House”.

Continue reading “Mi Depression, Su Depression”

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Improving Communication: Part 3

Hello! Rode my bike to the Y. Took a couple of classes and rode home. Then it was dog walk time. Right now I could stand a nap! Hopefully I can stay awake enough to write a sensible page. A little wonky? You know why!

I have continued to look for more information on loneliness and poor, social relationships for the visually impaired. You remember, miscommunication because of lack of nonverbal cues.

[If you have not read Sue’s previous 2 pages, I suggest you do that before continuing.  First, there’s Improving Communication: Part 1, then Improving Communication: Part 2]

The Pocklington review ended up saying there are no current answers. They called for more research. Hopefully the increasing numbers of us visually impaired will encourage someone to get on the proverbial stick.

Once again, there should be some sort of manual for this but I cannot find one. (Back to if you want something done right, do it yourself! Anyone want to make topic suggestions?)

An abstract from work done by Wang and Boerner indicated responses in their study fell into two categories. Sometimes the visually impaired adjusted their behavior while other times they just let the relationship go bad.

The group who tried to maintain relationships depended upon a few different strategies. These strategies included explaining themselves more and being more assertive. They also included relying on other senses for information, faking it and being more selective about whom they interacted with.

Remember several articles I read for both vision and hearing impairment stressed the need to share you have a disability. That can be hard for some people although not admitting to a disability can end up being harder in the long run. Sometimes we just gotta accept.

The people who let relationships go of course did things differently. They would withdraw and make fewer efforts to socialize. They would also become angry and tell people off.

As I research this, I keep coming back to the need for work with a good speech and language therapist to improve communication skills. Or at least that is my conclusion. Once again I could be dead wrong.

Quite a while back an Italian study, Extracting Emotions and Communication Styles from Prosody, included some neat charts that are basically a guide to identifying speaker emotion from prosody. Prosody is the pattern of stresses and intonations in speech. For example, joy is characterized by factors like quick meter, quick attacks and slight or missing vibrato.

If these characteristics have been identified and listed, it means people can be taught to recognize them. And if we can be taught to recognize them, we can harness them in efforts to improve communication which just might lead to fewer feelings of isolation and loneliness. Maybe?

….for what it is worth. That’s what I got. If there is a definitive answer out there, I don’t got it. I can’t find it. Anyone have any other ideas, let us know and we will pass them on.

These three pages were in response to an inquiry from a reader. If she knows one person with these concerns, we suspect there are dozens more lurking in the shadows. By addressing her concerns – or yours- we may help others.

Keep those cards and letters coming!😎 Continue reading “Improving Communication: Part 3”

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Yesterday’s News

Good morning! Lin just shared a video clip from something that looked like a local TV, health program. The clip was on geographic atrophy. That is GA to those in the know.

I have no problem with information being shared with the public. In fact, I think it is a good thing. The more exposure we get and the more noise we make I am hoping two things will happen. One would be law makers (read the deep pockets of government) will be more aware and sympathetic to our plight. (They might also come to realize it is going to cost BIG bucks to care for us!) The other will be people who have AMD will become more knowledgeable and go for help and support.

There are some drawbacks to these little TV presentations, though. For one, they are a bit behind the curve when it comes to breaking new news. The show talked about a fantastic, recent development that would help people with GA.

Fantastic? OK. Helpful? Yep. Recent? Only if you consider research published in 2013 to be recent.   So shoot me. I am an information snob. That information was just too yesterday’s news for me.

I also think they present half information. If you listen to the clip you will hear the expert talk about a ‘subset’ of patients who cannot be helped with current treatments. Not to put too fine a point on this – and look out because I can feel myself getting ready to rant! – but, honey, the group that can be helped with current treatments is the subset! 15% of AMD patients ‘go wet’. The 85% of us who are left are not the subset! (Told you I was going to rant!)

In the clip there is the implication that replacing RPEs will restore sight. We have talked about this a dozen times before. In GA the photoreceptors are dead. There is no sight without photoreceptors. The RPEs are support cells for the photoreceptors. They do not do any of the ‘seeing’.

But my big complaint about this clip? The expert says your world ‘ends’ when you develop GA!!! (Now I am really revving up. Head for the storm cellar!)

With every significant loss, there is a time of dismay and distress. That does not mean the end of your world! Everyone of us here is made of tougher stuff than you could ever have believed. Maybe you have never been tested before, but the steel is there.

Today I taught my class. I attended a staff meeting and saw two clients. Then I came home, walked the dog and made a meal. I am now writing this page. After that I have a psych report to write. Then maybe some down time ‘reading’ a BARD book.

Tomorrow I work, walk with a friend and go to my yoga class. I am making plans to go into New York City with a co-worker next month. The list goes on.

In short, if my world ended a year and a half ago, nobody bothered to tell me about it! I am still going pretty much full tilt!

So, bottom line? I guess it would be listen to the stuff in the media but remember it might not be accurate or current. Once again, caveat emptor. Best sources still remain published research. If you cannot read it or cannot understand it, ask Lin or me to look at it and we can tell you we don’t understand it either!

And about that end of the world business? Don’t believe everything you hear! GA is not a walk in the park. However, if you want to, you can still do that and dozens of other things as well.

Continue reading “Yesterday’s News”

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Sisters Are Doin’ It For Themselves

I have paid a lot of attention to the male movers and shakers in vision research. Perhaps it is time to note the contributes of the women. Recently I have come upon short articles about the research of two.

Sally Temple, SUNY-Albany, and her colleagues recently published a paper on how nicotinamide can suppress the progression of AMD. Nicotinamide is a vitamin B3 derivative.

Dr. Temple took pluripotent cells, that is stem cells, from people who had AMD and those who did not. She manipulated the stem cells to become retinal pigmentation epithelial cells and grew them in her lab.

One of the first things Temple and her team noted was the cells from the AMD people acted differently from the RPEs grown from healthy subjects’ cells. The cells from people with AMD produced different chemicals. The chemicals were the same ones that figure in the production of drusen and contribute to inflammation.

These were RPEs growing on a culture medium in a glass dish. There was nothing else to contribute to the formation of the chemicals. The chemicals had to be coming from the RPEs. And, with no other possible influences, the cause for the production of these chemicals pretty much had to be genetic.

The fault, dear readers, is not in ourselves but in our genes. One more tally in the genes are destiny column.

But the good news is, when they squirted (or whatever) nicotinamide on the offending RPEs, things improved. Chemicals that are responsible for the bad things were less and the RPEs survived longer.

Perhaps if we find a way to get nicotinamide directly into eyes, we will get the same results in vivo as in vitro. Worth a try.

Masayo Takahashi is a Japanese researcher. Takahashi has been experimenting using pluripotent cells taken from the same people they are going back into. No embryonic cells required.

There is excitement about this new procedure not only because of ethical issues. There are indications this procedure will be cheaper and faster to implement. In additional, they are thinking people can ‘bank’ their stem cells. These can be used either for ‘repairs’ in the original cell ‘owner’ or they can be given to other people who are immune matched. (Sort of like blood type matching. Don’t want the body getting up in arms over the ‘invading’ materials.)

Bottom line is the ladies are out there rocking it just like the men. They continue to come up with great new findings and each one takes us a little bit closer to effective treatments and maybe – just maybe – even a cure.

To copy Lin’s use of old song titles, “sisters are doing’ it for themselves”. And they are doing it for us, too! Continue reading “Sisters Are Doin’ It For Themselves”

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Caveat Emptor

So we have come to the middle of another week. Hump day, Wednesday!

I looked up funny hump day jokes and found a slew. You can take your pick. Some of them are giggle-out-loud quality.

Anyway, I taught today and then went over to the sight loss support group. My low vision person was presenting the latest in low vision technology, the MoJo monocular.

Mojo monocular

I cannot give you much of a spiel on it. I have not done much more than glance through it and pass it on. Therefore, as usual, this is just me telling you what I read. No recommendation.

The MoJo is a magnifier that works both near and far point. The price for the handheld monocular itself is about $1500. Add the part that can turn it into a CCTV and you are looking at $3000 or so. The manufacturer, Enhanced Vision, advertises a large field of view and autofocus capabilities.

This may be a great addition to the list of low vision tools. May not be. The MoJo has only been on the market for two or three months. If you are interested and have the money, try it and give us a product review.

And continuing in the interested and have the money vein, I have started to see articles suggesting that, in spite of its celebrity endorsements in the UK, the Eyemax Mono may still have some bugs to work out. The Daily Mail reported the Macular Society is suggesting caution before you agree to undergo this expensive procedure. The cost being quoted is £15,000 which at present exchange rates is approximately $19, 480. Ouch. And if you are an American, remember the Eyemax Mono is not FDA approved and added to that cost would be a trip across the pond.

In short, it sounds promising, but remember caveat emptor. Use extreme caution before committing to any new procedure. Do your homework. Nothing is ever as good as it sounds at first blush.

The newest implant this side of the pond is a miniature telescope. This one is FDA approved so it should be both effective and safe. The manufacturer is VisionCare.  The surgery is Medicare eligible according to the article so we are not talking about huge out of pocket costs. That is a plus.

Now, once more, on the minus side, this is not a cure and will not halt the progression of the disease. All it is is magnification and a spreading of the image to intact parts of the retina. They have moved the magnification system from the outside in.

They also will only do the implant in one eye. That is because there is a ‘tunnel effect’ in the vision of the treated eye. The untreated eye is used for peripheral vision.

Another problem with the telescope is the need to train the brain. There is a period of several weeks during which the patient is learning to adapt to a new way of seeing.

Bottom line, things are progressing but not necessarily in the areas of treatment or cure. All three of these things mentioned magnify and move the image to intact retina. Close, but no cigar.

My personal preference is to find something medical that will stop the disease progression in it’s tracks. Barring that, magnification and relocating the image may bring you an undetermined period of better sight. You pay your money and you take your choice….just do it wisely. Continue reading “Caveat Emptor”

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