Make the Safe Call

Hey. I had a real chock full day planned today and what do I do? Nothing. Pretty much nothing. Bummer.

A friend and I went for a Japanese hibachi meal last evening. About three hours later, my system revolted. I will spare you the details, but it really was a waste of what had seemed like a nice meal. After I was finished ridding myself of dinner, I slept poorly. (Wasn’t food poisoning. I KNOW how that acts. Just got a hold of something my system refused to digest).

Now, my plans for the day had me in town, navigating from one activity to another from morning to mid-afternoon. I would have been on my own. My husband was motorcycle riding with a friend.

Had it been two years ago, I would have tried it. I could have taken myself home when I needed to. Cut the day short. Now I don’t have a car. Now contingency plans like that don’t exist for me.

I thought about it. What would happen if I got sick again? Huddled in a corner somewhere until someone had pity on me? Spend 20 minutes praying I did not vomit in their car? Nothing like that seemed like a good option. They were not good options at all.

So I allowed discretion to be the better part of valor. I turned off the he alarm and went back to bed. Spent the day hanging out at home.

I like to think something like this won’t happen again but I know it will. Without the ‘escape hatch’ having your own transportation can afford, many of the marginal calls that I would have said “go for it!” before will now have to be “no”. That really is limiting. It is depressing. I do not like it at all.

So, the game plan? Keep myself as healthy as possible. Be grateful for everything I am able to get to, everything I am able to do. Beyond that I guess it just comes down to acceptance. I cannot cut it as close as I used to. I cannot make the marginal call any more. Sometimes I need to use a little discretion. Make the safe call. Damn.

written October 15th, 2017 Continue reading “Make the Safe Call”

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Maybe They Have Something

Good afternoon! It was a busy morning. My husband had to take the car for service so he dropped me off at the hospital for a shoulder x-ray and routine blood work. My shoulder pain is little better.

You would think I could just continue with up dogs, down dogs, planks, side planks and all those other yoga moves with no negative effects, but nooooo, my shoulder is really sore. It might have something to do with my not being as young as I used to be, but I doubt it.😊

Then I walked down to get a haircut and Pizza Hut buffet lunch. Picked up by hubby. Grocery store. This year’s photos to the camera store for display. Home.

I have cleaning to do. I have a report to write. Oh, well. I have an OBLIGATION to our website!

At the end of last year Lin did a page on topical treatment for wet AMD. That means eye drops instead of shots. One of the ones she talked about was Squalamine. At that time Squalamine had failed to satisfy the efficacy standard laid out and the trials had been terminated.

Squalamine had failed to reduce the number of shots needed to keep crazy, blood vessel growth at bay. However, there were some secondary goals that were reached. According to the January 29, 2017 VisionAware, there were positive effects on acuity. This was especially true in people with a specific type of lesion. 31% of the people with ‘classic’ wet AMD lesions gained 11 letters on the chart!

According to healio.com a classic lesion in wet AMD has well-demarcated hyperfluorescence in the early part of the test and progressive leakage later on. It is not to be confused with occult or combined lesions.

Ohl Pharmaceuticals decided in February, 2017 to take the 200 people already enrolled and start in on phase 3 trials. In April Ohl announced it was amending the timelines of the study so there could be results late this year or early 2018. They also amended their goal to be an increase in visual acuity as opposed to a reduction in shots needed.

Now, I am wandering into the area of unsubstantiated speculation here, so don’t take what I say as gospel. OK ? OK. The April 10th press release alluded to the research being funded until early 2018. To quote: “Following the close of financing today we are funded until 2018 including completion of our ongoing clinical trial and data readout by the end of 2017 or early 2018.” Now if that were me and I were getting positive results, I would want to show off those results quickly and improve investments and other funding. If I had squat, I would stall and plead for just a little more time and MONEY.

In other words, I think they have something.

Another reason I think they have something? The press release said they were working with the patients who had “the greatest potential to benefit from Squalamine combined therapy”. In other words, they stacked the deck. (In my opinion, of course.)

Anticipating they rock the phase 3 study AND the FDA gives approval to ‘go live’ in a reasonable amount of time, a combination Squalamine/Lucentis treatment could be available in 2018. Cool. We are on our way.

Written October 9th, 2017 Continue reading “Maybe They Have Something”

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Keep Calm and Carry On

I want to get this typed and out because Lin and I both suspect people will not listen to me or Paul McCartney and let the suggestion of atrophic damage beyond the macula be.

How can you not listen to Paul? He was my favorite Beatle when I was a teenager! Remember when the Beatles were on Ed Sullivan? [Lin/Linda: of course I do – I was sitting on the floor in front of the TV loving every second of it.]

What? Pertinence to the topic? Okay. Sigh.

Found an article based on research coming out of Seoul, South Korea. The research looked at peripheral reticular pigmentary degeneration (PRPD). That is lesions on other areas of the retina as opposed to lesions only on the macula.

Primero point: the authors say three or four times this type of degeneration is rare, rare, rare. They had trouble finding enough people to make their study valid.

Point segundo: patients with degeneration of the peripheral retina are significantly older than patients who do not have it. Yes, some of you are up there but most of us don’t have to worry about the truly advanced age factor for some time.

Point three, whatever that is in Spanish [tercero]: the most common, probably contributing factors in these people were factors related to compromised circulation. That was both systemic and ocular circulation. The biggies were found to be retinal artery occlusion, ischemic (low blood flow) optic neuropathy, and a couple of other ischemias. [Click here for more about these conditions that are sometimes called ‘eye strokes’.]

One that sort of scared me was a positive correlation with high blood pressure. However, last week my pressure was 122/78! Admire it now because I cannot tell you the last time it was so beautiful.

Other factors are as follows: stroke, carotid artery stenosis, and yes, AMD.

Now don’t get your panties in a bunch just yet. The theory is, once again, there are common, underlying factors leading to these conditions. AMD does NOT cause PRPE although the same may not be said in reverse. PDPR may promote the development of AMD.

They are looking at a shared genetic risk between AMD and PDPR. There is evidence a complement factor H variant is involved in coding for a propensity for PDPR just as it is thought to code for some (all?) variants of AMD.

Choroidal ischemia is a factor in AMD as well as PDPR.

So, bottom line here: this is a very rare occurrence, especially in younger oldsters. It is related to poor circulation. Circulation tends to get worse as we get older. It is also possibly related to variants in complement factor H.

Can’t change your genes just yet at any rate. Cannot get any younger. That leaves taking care of your circulatory system. Do what you can to improve it.

As an anonymous member of the British Ministry of Information said: “Keep calm and carry on.”

Our journey is not over yet.

written October 8th, 2017 Continue reading “Keep Calm and Carry On”

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A Brisket Ankle

Lin reminded me I needed to finish talking about my writing process. Apparently a couple of people have asked.

I already addressed the topic of how I get ideas. They just pop up from life or some comment someone has made. Sometimes I go looking for them online.

I subscribe to healio.com and a few other eye sites. I can ‘zoom’ them on my iPad to read and see if it is an article I could use. If it is something I want, I print it out.

Once it is printed out, I put it on my CCTV to re-read and underline what I consider are the important points. From there I start to write.

I bought a Verizon tablet soon after I ‘lost’ my second eye. It is about twice the size of my iPad mini (which I love and goes just about everywhere with me). I can zoom the font up to around 28 points or maybe more on the tablet. Very easy to see. I type with one finger. I can touch type and did put a keyboard on the Verizon tablet but I somehow never got it connected right so it doesn’t work. Doesn’t matter. So far my process works.

Why do I not use speech recognition? Speech rec, which autocorrect turns into recognition just about every time, is possibly more annoying than autocorrect, with which I have a true love/ hate relationship. Speech rec works best when you follow proper conventions, use one syllables words and pretty much don’t stray from the beaten path. In case you haven’t noticed, I “don’t talk too good” when I write. Training a speech recognition – there it goes again! – program to ‘follow along’ would be incredibly frustrating. And not only would it be hard to train it to my goofy style, I would also have to train it on the specialized vocabulary of psychology, ophthalmology, genetics, what have you. Oy. Oh, and Yiddish, Spanish and several other languages from which I know a half a dozen words max and occasionally like to use.

Lin can tell you about my failed forays into the world of speech recognition. Also my yogini. I often use speech recognition when texting her. What my yogini usually gets ends with “…no, I didn’t say that! …no, I did not say that either! Oh hell! You knew what I meant!” She finds my attempts to be very entertaining. [Lin/Linda: wish I’d saved some of her best goofs! There were 2 memorable ones…I had to figure out that ‘a brisket ankle’ meant a ‘broken ankle’ and that ‘toxo plus Moses’ was ‘toxoplasmosis’.  Great entertainment sometimes!]

There is another problem with using speech recognition. If I have been doing a lot of it, when I go to leave a ‘regular’ voice message I will say something like “Got your message period. Looking forward to seeing you explanation point.” Makes me sound a little strange.

Reading back what have written, I use a technique I read about. It works pretty well when you are using eccentric viewing. Hold your head still and move the text. It is easy to do on a tablet.

Once it is written, I send it along to Lin who authenticates what I said, puts in the links, corrects any grammar or spelling errors she sees, formats it and sends it back for final proof. The rest, as they say, is history.  [If you’d like to read more about this part, go to About Our Project.]

Hope that answers some of your questions! Caio!

written October 8th, 2017 Continue reading “A Brisket Ankle”

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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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Slogging Through Again

I am waiting for my ride to go hot air ballooning and working on deciphering an article Lin sent me. Once again the question is how much loss can we expect from dry AMD, especially geographic atrophy? Regillo told me 60 degrees of arc loss would be extreme but my local retinologist said some people in their 90s can have GA encompassing the entire retina. Ouch.  [Lin/Linda: Sue wrote about ‘degrees of arc’ in her page Love Wikipedia.]

So, here be me again, slogging through another article I about half understand. Want to slog along? I would appreciate the company!

The article is entitled Clinical Endpoints for the Study of Geographic Atrophy Secondary to Age-Related Macular Degeneration published October, 2016. You there in the home audience feel free to download it and play along!

First of all, I latched on the statement (paraphrasing) “drusen may not result in actual visual acuity loss but the effects of having drusen can be seen in functional deficits very early in the disease process”. What functional deficits?

A 2008 paper by Feng Qiu and Susan Leat found people with very early AMD have loss of “low spatial frequency static contrast sensitivity”. Yippee. Once more down the rabbit hole. It appears – according to the appendix of Emergent Techniques for Assessment of Visual Performance – spatial contrast sensitivity has to do with lighting, the place on the retina where the image is falling and something called field size as well as time factors and the orientation of the image.

Boiled down it has something to do with how sensitive we are to variations in the data our eyes are gathering. I think. Don’t hold me to it. Just know that 20/20 vision with drusen might not be as perfect as we might think.

We talked about reduced dark adaptation before and this is also a problem in early AMD. Apparently there are several effects early drusen have that have nothing to do with acuity.

The next thing I had to look up – in the same paragraph, mind you! – was information that might help me understand a statement suggesting advancement to GA from early AMD may in part depend upon the presence of “reticular pseudodrusen”. So now we have drusen impersonators????

According to Association of Pseudodrusen and Early Onset Drusen by De Bats, Wolff et al (doesn’t that team sound perfect for the Halloween season?) pseudodrusen form on top of the RPEs and not below them as do ‘real’ drusen. There seems to be a connection between having ‘eye poop’ aka drusen on top of the RPEs and early and rapid develop of advanced AMD.

And the above was all in one paragraph! I may be a very long time in deciphering this baby.

So what I have discovered so far is this: visual acuity does not tell the whole story about functional vision loss when it comes to early AMD. If you have drusen be aware your contrast sensitivity and dark adaptation are probably already compromised. Secondly, pseudodrusen, which is eye poop on top of the RPEs, can predict a more rapid and earlier progression to GA.

Have I found a thing about GA outside of the macula? Not yet, but I am still reading! Talk at ya later!

written October 7th, 2o17 Continue reading “Slogging Through Again”

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Not a Total Loss

Hello. Sitting waiting to see the retinologist. I have a day of medical appointments. One is at a satellite office and the other is at the main hospital. Supposedly the hospital will provide connecting transportation. We shall see.

I had to ask to find out if this is a service they offer. If you have to go from building to building such as I am today, ask. They don’t advertise this sort of thing so we need to be proactive.

I realize most of you don’t play Panda Pop but if you do you know you can ‘win’ costumes for Mama Panda. I just won a costume and my Mama Panda now looks like a cross among the bride of Frankenstein, Tim Curry in Rocky Horror Picture Show and Sparkle Brite. Maybe a little Little Richard on the side. Bizarre.

Did any of you see Rocky Horror Picture Show in the theatre? Late 70s. They said “a toast” on the screen and you got pelted with flying slices of bread! Hard to believe that is now nostalgia.

What does this have to do with AMD? Nothing. Just some crazy observations to provide distractions.

If you don’t want to read this sort of nonsense, volunteer to write a page!

Sometime later: the van connection worked. I am now at the main hospital. Remember to ask about such services. No one volunteers the info.

Update on me: my left eye has surpassed my right eye in the race to ‘blindness’. The atrophy in my left eye is ‘advanced’.

Still won’t tell me what to expect, when it will stop. My retinologist said some people in their 90s have deterioration of the entire retina! Gulp! Not what I wanted to hear.

Some lady sat on the bench with me and apropos to very little asked me if “the shots” give me light sensitivity. Since I don’t get “shots” I had no clue. Although I just looked it up and it appears shots do cause some sensitivities. I assume photosensitivity is among them. Comments? [Lin/Linda: actually, photosensitivity is one symptom of macular degeneration. I can’t find anything that says injections can =cause= photosensitivity, but I have heard people say that an injection can make it worse.]

Again, please share. Otherwise I will just prattle on and you don’t want that!

Some more time later: I am now standing in the outpatient surgery waiting room, at the charging station. I have no business in outpatient surgery but the charging station is here! There is none in general internal medicine. Pooh.

These stations have connections for four or five different makes of devices including Apple products. Don’t be afraid to use them if you ‘run dry’ in your device. We have very legitimate uses for our devices and we need to keep them charged…even when the van comes early and you forget your own charger.

And I am adding one piece of legitimate AMD information before I close: According to Pubmed in a brand new October, 2017 release, hot off the presses as it were, dry AMD and prostate cancer are correlated. Prostate cancer can increase oxidative stress in the entire system. Androgen deprivation therapy helps to reduce the chances of AMD.

So, not a total loss of a page. Talk to you later!

written October 3rd, 2017 Continue reading “Not a Total Loss”

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