Patrick C. Notchtree's Blog: Patrick C Notchtree

October 2, 2018

It’s been an interesting few weeks with regard to macular degeneration. First there was a small study in the USA that indicated that regular small doses of sildenafil (ie Viagra) had a beneficial effect on dry macular degeneration. Some participants found the decline in vision stopped and some even experienced an improvement. So guess who started taking a daily 25mg of sildenafil! And of course it has a beneficial side effect! Lol
Then there was the news that Avastin would be approved for the treatment of wet AMD in the UK. It is apparently equally as effective as Eylea and Lucentis, the manufacturers of these had opposed the use of Avastin. But I was shocked at the cost of these drugs to the National Health Service (NHS).. Each injection of Eylea costs over £800 ($1070) and Lucentis costs over £500 ($670) a time. Avastin costs just £28 ($37) a time. I have now had many Eylea injections into my ‘wet’ right eye. There is no way I could have afforded these so thank you, NHS!
I went to the eye hospital yesterday for another injection yesterday into my wet right eye but of course they also do an eye test. My score for my dry left eye, the one I use as my right has corneal damage, showed a 10% improvement, lifting me well clear of the legal driving threshold here in the UK. Is that a normal random variation – or is it the sildenafil? With no obvious adverse effects of it, I will keep taking the sildenafil.
I noted that when I was being prepared for the injection, that they were still using Eylea. It seems there are still some legal loose ends to be tied up before Avastin can be used. And even then it will be clinical decision made for each patient rather than solely on the basis of cost. Don’t you just love the NHS?
So then I got my injection, quick and almost painless and there once more was my private lava lamp again. It faded quickly though and within a couple of hours vision was normal.
Back again at the end of November.
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Published on October 02, 2018 03:36 • 6 views

June 21, 2018

Giovanni's RoomGiovanni's Room by James Baldwin

My rating: 3 of 5 stars


After all the hype, I was disappointed. I only kept reading because it was the choice of a book club I attend. I just couldn't empathise with any of the characters. It on;y got interesting right at the end.



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Published on June 21, 2018 01:56 • 97 views

April 27, 2018

The more I read and learn about macular degeneration, the more I realize the signs have been there for years. It started with television actors. Some casting directors seem to have very limited tastes, especially when it comes to female actors. Several actors in the same drama would be young, blonde etc. Obviously to the taste of the (no doubt male) casting director. The trouble was I found it increasing difficult to tell them apart, which made following the story line of a drama rather awkward at times. It was fine if they were particularly distinctive, or well known and recognisable. But often I would find myself checking with my wife which character was which. There is a known condition which causes people not to recognize faces called prosopagnosia or more simply, face blindness. (https://en.wikipedia.org/wiki/Prosopagnosia). I thought this was what I had, and even joined a society for sufferers. The trouble was though that I had no problem with familiar faces, so it didn’t quite fit.
As I got a bit older, another issue I found was that it took longer for me to adapt to changes in light levels. This was most noticeable of sunny days when I was driving, and I looked down at the instrument panel and found I could not see it. Before my eyes had adjusted to the car interior, I had to look back at the road. I assumed that the problem was my ageing irises now could not move quickly enough to open up the pupil of my eye. But I could see the angle of the speedometer needle even if the figures round the edge could not be read. So one carries on.
As the years passed, I accommodated to these minor nuisances and as far as my vision went generally, all seemed normal. Except I was now getting new glasses more often.
I started to find glare a problem, especially when driving, for example on a bright sunny day behind a white van or car. I would screw my eyes up a bit to reduce the glare. Of course, polarised clip-on sunglasses helped with that. Another little adaptation, and life goes on. I was told the glare was caused by my mild cataracts I was developing, but as everything else seemed as usual, I was not concerned.
At one regular eye check up, I was advised to make an appointment to see a specialist at the excellent eye hospital not far from where I live. This I did.
“Who told you that you had cataracts?”
I told him and he replied, “Well, you do but they’re very mild. You main problem is macular degeneration.”
My heart felt like stone. My mother had suffered with this and so I knew a bit about it and it wasn’t good.
“I wish I had cataracts,” I said to him.
“Why?”
“Because you can do something about cataracts.”
“True,” he said.
Aged 69 I was diagnosed with dry macular degeneration in my left eye and wet in my right. For those that have never heard of this it is in fact the most common cause of blindness. The cells at the focal point of the retina, the macula start to die off, causing loss of vision directly in front. Sufferers are not totally blind because the edges of vision are not affected. An example from many years ago when I took my mother on a trip out among the mountains.
Suddenly she said, “Look at the climbers up on the crag.”
I looked and found some tiny figures high up a mountain. “I thought you couldn’t see.”
“I saw them out of the corner of my eye, Now I look straight at them and I can’t even see the bloody mountain!”
My additional problem is that because of an accident many years ago my right cornea is badly scarred meaning that for the past forty years I have relied on my left eye for vision. However, as the dry type in my left eye has no treatment available as yet (although there are some interesting developments but cures are years away), they decided to treat my right eye with injections which cause the rogue blood vessels which disrupt the macula to reduce. These injections are given straight into the eyeball which is not a lot of fun but is mercifully quick and it beats the alternative of losing sight. Discomfort level about on a par with having a small filling at the dentist, but it’s over a lot more quickly. Their reasoning is that if they can save the right retina with injections, if my left eye deteriorates too much, a corneal transplant might be possible so I can use my right eye again. I have now had fifteen injections, the interval is varied depending on the state of the retina. I have been taking a supplement designed to protect the retinas to try to halt the decline of my left eye. This is made to what is called an AREDS2 (Age Related Eye Disease Study 2) formula, the main ingredients being lutein along with zeaxanthin. The consultants at the eye hospital are happy with this, and the loss in the left eye seems to have plateaued, for the time being anyway. Fingers crossed. I am still able to drive although I am aware my vision is not what it used to be. So I am careful. Dusk is the worst time I find, especially when people in grey cars drive on a grey evening along a grey road and decide it’s not time to put any lights on yet.
So why did I start this by discussing face blindness from twenty years ago and reading my speedometer from about ten years ago? Because I now realize that these were the very earliest signs of macular degeneration starting.
Human faces are all pretty much the same – forehead, two eyes, a nose in the middle and a mouth. The brain devotes huge resources to identifying and magnifying small differences. We learn this as we grow up and facial patterns seem to be wired into us, which is why we often see ‘faces’ in objects, like looking into a fireplace into the burning coals, or the man in the moon; or in one case that went round the internet, a house that looks like Hitler. People often find the faces of other ethnic groups harder to distinguish, especially those where complexion and hair colour tend to be the same. But we learn to adjust to the fine detail and then their faces too become recognisable, But what if our eyes aren’t seeing that fine detail? I have likened the loss of vision a bit like going from high definition 1080 television back down to 720 or 640. It is in facial recognition that this is first noticed by many people. Seeing who is who at a distance becomes more difficult, and it means that people have to be closer before you can be sure who they are. Of course body language and other cues may enable you to know who the person before you can actually resolve the image of their face.
So far in my left eye I have no totally blind areas and no distorted vision, as seen on a grid square called an Amsler Grid. It’s harder to tell with my right eye of course because the cornea scatters the light. There seems to be some distortion at about ‘10 o’clock’.
So what about the changes of light? I have taken part in a study into dark adaptation as a test subject because it is now thought that the inability to quickly adjust to changes in light level is another early sign of macular degeneration. This study is ongoing.
So that’s where I am. With treatment, lutein and whatever, things seem stable. Long may they remain so.
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Published on April 27, 2018 11:16 • 1,016 views

March 31, 2018

I guess like many authors I set up a Google alert for references to my book. It crops up occasionally and it’s usually of no concern.
The other day I got one offering a free download of my book from storage.googleapis.com. Naturally I was concerned about piracy of my book, although my book is on Google Play etc. it’s not free.
When I clicked the link I was offered a PDF. This turned out to be a page that described my book using my own blurb etc, and a download link. This took me to a site called eaststemcell.com which wanted money for a subscription after which I could download thousands of books for free – including mine.
At the foot of the page was a link called DMCA and as I knew my book is copyrighted I clicked this. The page described in detail how to lodge a complaint and then had a link to another page to fill in a contact form. Guess what, 404.
So I decided to contact Google support to see why storage.googleapis.com seemed to be in collusion with pirates. Here is the ensuing conversation:
Google Support
Yogesh
8:35 PM
You are now connected to Yogesh, who will be with you momentarily.
Yogesh
8:35 PM
Hi, thanks for contacting Google Books Partner Program support! How can I assist you?
Patrick C Notchtree
8:36 PM
I have a book on Google Books and I find it seems to be being pirated by eaststemcell.com via googleapis.com. How can this be prevented because they have not sent me any royalties?
Yogesh
8:37 PM
I understand that your book is available on Google Books via googleapis.com without your consent. Please correct me if I'm wrong.
Patrick C Notchtree
8:40 PM
Not quite. I did submit it to Google Books, but I assume that Google would pay royalties. It seems to be offered by eaststemcell.com without my consent. They claim almost 4000 downloads and say it's had 566 reviews. I received an alert about this a short while ago and the link was to googleapis which then took me to eaststemcell.com
Yogesh
8:41 PM
Could you please share the URL of the book in question?
Patrick C Notchtree
8:42 PM
https://www.google.com/url?rct=j&...
Patrick C Notchtree
8:42 PM
That gets you a PDF which has a link which takes you to eaststemcell
Yogesh
8:43 PM
Thanks for sharing the link.
Patrick C Notchtree
8:43 PM
This is via storage/googleapis.com
Yogesh
8:44 PM
Please allow me a few minutes to look into your concern.
Patrick C Notchtree
8:44 PM
Then you get this
Patrick C Notchtree
8:44 PM
http://eaststemcell.com/files/storage...
Patrick C Notchtree
8:45 PM
Their DCMA contact link is a 404!
Yogesh
8:48 PM
Thanks for waiting.
Yogesh
8:49 PM
The book "The Clouds Still Hang" is available on Google Play in GB at the price of GBP 2.99. You'll receive earnings from Google if your book has been bought from Google Play.
Yogesh
8:50 PM
The link that you've shared leads to the eaststemcell web page and if your book is available on this site I suggest you to contact the eaststemcell and also, the DMCA link is working on my end.
Yogesh
8:50 PM
Here is their DMCA link: http://eaststemcell.com/storage/dmca....
Patrick C Notchtree
8:52 PM
Correct. It gives lots of details but they say they can only handle a complaint from their contact page which is 404. Try the link in that page.
Yogesh
8:54 PM
I suggest you to scroll down to the bottom of this page: http://eaststemcell.com/files/storage.... You'll find a DMCA hyperlink that should not give you a 404 error as it's working on my end.
Yogesh
8:55 PM
Hi, are you there?
Patrick C Notchtree
8:56 PM
That's just the same page again
Patrick C Notchtree
8:56 PM
It sends you round in circles but you always get directed to the contact page in the end which is 404
Yogesh
8:57 PM
Could you please try this link once: http://eaststemcell.com/contact.php?
Patrick C Notchtree
8:57 PM
They claim they do not host any files themselves so where are they getting the PDF from? Because of the link with googleapis I can only assume that this is a security flaw in Google Play.
Patrick C Notchtree
8:59 PM
If you follow the chain of links from there you end up in the same place. They're bloody clever and I guess just hope people will give up.
Yogesh
9:01 PM
Please know that your book is DRM enabled. DRM is intended to protect the content owner and keep e-books secure from unauthorized sharing. Your book is completely secure with us and only those users will be able to read it who have bought it. Please refer to our Help Center article on DRM: https://support.google.com/books/part...
Yogesh
9:01 PM
I apologize but I won't be able to help you with their website.
Patrick C Notchtree
9:02 PM
That’s what I thought. So is there a way of breaking their link with googleapis on grounds of abuse? It makes them appear legitimate and abusing Google's name.
Yogesh
9:04 PM
Please allow me a minute to fetch relevant information for you.
Yogesh
9:07 PM
Thanks for wating. I apologize but there is only one way which is to contact them as they are holding your book on their website.
Patrick C Notchtree
9:08 PM
It's impossible to contact them
Patrick C Notchtree
9:08 PM
Every DMCA circuit ends up at the 404
Yogesh
9:09 PM
You can email them at their email address.
Patrick C Notchtree
9:11 PM
They are quite clear that DMCA can only be handled via the specific page which is a 404. Maybe my only option is remove the books from Google Play and see if that makes it unavailable on eaststemcell.
Patrick C Notchtree
9:11 PM
If I email them I can bet that that's the reply I will get.
Yogesh
9:12 PM
Please know that removing the book from Google Play will not make any difference as it isn't linked with Google.
Patrick C Notchtree
9:13 PM
So why is the link forwarded from storage.googleapis.com?
Patrick C Notchtree
9:13 PM
Google could break that link.
Yogesh
9:15 PM
The link doesn't open on my end. Also, on clicking download button on http://eaststemcell.com/files/storage... leads to a page which claims that one needs to sign up first to read as many ebooks as they want.
Patrick C Notchtree
9:16 PM
Correct. And they say 4000 copies have been downloaded. But I've received nothing from them and I never uploaded the book to them so they are pirating it from somewhere and keeping my cash!
Yogesh
9:17 PM
It seems to me a fake link which leads to another fake link. Every link keeps you rotating to another link which leads you back to the same link.
Yogesh
9:18 PM
Please understand that they're not getting your book from Google.
Patrick C Notchtree
9:18 PM
That's what I've been saying all along. But I guess I'm getting nowhere. According to a whois search their server appears to be in San Francisco.
Patrick C Notchtree
9:19 PM
Possibly not, but people see the storage.googleapis.com and assume it's legitimate. So break that connection.
Patrick C Notchtree
9:20 PM
Wherever they got it, they are using Google's good name to carry on their scam.
Yogesh
9:21 PM
Please know that we only assist with queries related to Google Play Books Partner Center program. I request you to search for this google apis website and contact them as we only assist with Partner Center queries.
Patrick C Notchtree
9:21 PM
OK. Good bye

After a bit of a hunt I found the email address cloud-abuse@google.com
And so I sent them information, only for Google to bounce that saying it doesn’t exist.
I do not know where eaststemcell got my book in PDF format or any other, but does seem to me that Google are complicit, or at least negligent in allowing a server under their control to host pirated material.
So that’s my rant – any ideas or comments?
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Published on March 31, 2018 15:38 • 2,091 views • Tags: copyright, eaststemcell, google, googleapis, infringement, piracy, stolen-book

January 21, 2018

It's been a while since I updated about my macular degeneration, but it's time to catch up, especially as there is some good news to share.

This has been an interesting week as far as my macular condition is concerned. On Tuesday I saw the consultant. They took all the usual photographs of my retinas, as well of course as testing my eyesight. My dry AMD left Eye has not deteriorated which is good because that is the one I use. I am still well above the level required to drive. Keep taking the AREDS2 tablets.

In one sense, there was even better news for my right eye. This is the one with wet AMD, but also corneal scarring from an accident many years ago. Therefore it is not one I use much, but the idea of treating it for wet AMD is so that a corneal transplant may become available in the future if my left eye gets too bad. The good news with the right eye is that the injections of Eylea have been working, and there is now no fluid behind the right retina. The consultant wanted to order one more injection of Eylea and then wait for a whole 10 weeks before seeing me again. So that is good progress. I had the injection this morning. (Saturday January 20th)

Of course, should experience problems in the meantime, or my eyesight gets worse, then I can go straight back to the eye hospital and they will see me immediately. Thank God (well, the Labour Party actually) for the National Health Service, and long may it survive.
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Published on January 21, 2018 00:20 • 66 views • Tags: eyesight, eylea, macular, nhs

November 22, 2017

This book spans a life time and in fact is pretty much contemporary with mine. We meet David Sparsholt while 17-year-old student at the beginning of the war at Oxford. He seems old for a 17-year-old to me but maybe that was the war. His physical attraction was never in doubt. The book moves on in several stages and the Sparsholt affair changes in meaning as we advance. We follow his son as he grows up realising he is gay, although since Bastien he always knew.

What becomes apparent, and struck a chord with me, was that there was some scandal involving both sex and money, in which David Sparsholt was a major player. The exact details emerge slowly, but once it is for sure, the stigma remained with David Sparsholt to the end. For him too, the clouds still hang.
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Published on November 22, 2017 06:25 • 51 views

September 13, 2017

My trip to the eye hospital went well, I think. I had the retinal photography done first and then an eye test as usual. My right eye, the one with wet AMD, was about the same, in other words I could read few letters, but this time with the pinhole I got a bit further down the chart, about half way. This is because of the corneal scarring from the accident 40 years ago.
My left eye, the one with dry AMD, seemed slightly improved, I read more letters than before. Still well better than the level required for driving, thank goodness. Then loads of drops to numb the eye before the pressure test which was normal and then more drops to dilate my pupils.
Then I saw the doctor who was pleased with the results, and decided to take me from injections in my right eye every six week to every eight.
I asked him about lampalizumab which could be a treatment for dry AMD. He knew about it but said it was early days to see if it was effective. He said a treatment for dry AMD was the Holy Grail for eye medicine.
So I’m back next week for an Eylea injection. My dilated pupils had a hard job coping with the bright sun on my wife’s white car, my son’s white front door – in fact with anything at all bright. As I write, about eight hours later, it’s settling down a bit. I should be able to drive tomorrow.
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Published on September 13, 2017 09:28 • 11 views

August 21, 2017

I am lucky enough to have witnessed a total solar eclipse. Not today in the USA but in Europe 18 years ago, Wednesday August 11th 1999. But I thought I would recount my experience of that.
We were in Munich with friends to see the total solar eclipse. We tuned into Sky News and watched the eclipse over Cornwall, and the UK commentators trying to make the best of the cloud and rain. Like many people in the UK, we saw the shots of the eclipse from the aircraft that every TV network seemed to have chartered to get above the clouds.
But the eclipse was coming our way, so we went into the garden where it was now warmer and dry, with blue patches in the sky. Fingers crossed! We had the foil viewers and sat on the veranda with the TV in the lounge behind us and hoping for a clear bit of sky. It got cooler and dimmer. A strange light, unlike twilight, but best described as diluted light. Cooler and darker, the partially obscured sun taunting us among the clouds. It got to the point where there was just a sliver of sun left. It was in a clear patch, and I was looking through the viewer. I turned to check the TV, now on the local station, and saw the same image, which suddenly disappeared. I turned round and looked up, forgetting the viewer - and there was a black hole in the sky, surrounded by the corona of bright light, easily seen with the naked eye. 'Karen' was trying to find the sun with a viewer, but I told her just to look. It was an eerie and awesome sight, no picture or TV image of which can properly duplicate. We could see "Bailey's beads", where tiny fragments of the sun shine through valleys on the rim of the moon. How incredible that the sizes of these two objects viewed from Earth match so exactly! Astonished and subdued we watched, oblivious of the camera lying ready for just this. The sky was a deep blue, not dark, and three or four stars were visible. Glancing down into the garden, I saw that there was darkness, I couldn't see the other side in shadow. It was quiet, cold and still. Blue sky, stars and clouds, but dark at ground level. Dark shapes of trees framing the deep blue sky with darkness below and around us. Distant yelps of delight from others in their gardens. The TV screen was showing totality from an aircraft above Munich. After perhaps 30 seconds, a cloud came across the face of the eclipsed sun, and we didn't see totality again, and so missed the "diamond ring" of the sun's re-appearance. But we had seen totality, which is more than many people have had the fortune to do.
We celebrated with white German sausage, a sweet mustard and beer with bretzel bread
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Published on August 21, 2017 10:36 • 11 views • Tags: 1999, munich, solar-eclipse

June 6, 2017

Time for another update. After the monthly series of injections, I went yesterday to see the doctor at the eye hospital. The photography of my right retina (the one with wet AMD) showed that the injections had worked and the stray blood vessel had gone, leaving a flat retina. So the injections are now every six weeks for a time.
The left eye (dry AMD) hasn't changed. No sign of wet AMD there, and the macula looks the same. Still above driving level. So back on mid-summer day for the first of a series of six-weekly injections.
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Published on June 06, 2017 15:52 • 20 views

March 11, 2017

On March 1st I was driven to the eye hospital for another session about my Macular degeneration; dry in my ‘good’ left eye, wet in my corneally damaged right eye, but this time with a doctor to assess progress. After an eye test which showed the vision in my left was still good (given enough light) and once again confirmed I can see little through the damaged cornea of the right eye, I had drops in my eyes to dilate the pupils and then into the Retinal Photography room. The same pleasant Irish guy did the job. He did comment about a bit of fluid under the right retina. Then back to the Macular Unit to see the doctor. A different one this time. He was pleased with the vision in the left eye, but concerned about re-appearance of fluid under the right retina. I had been on Eylea injections in the right eye every two months, but he ordered me back on to monthly injections to try to control the fluid build up. He wanted one done as quickly as possible to start the monthly series, so an appointment was books for the next available slot. I told him I was taking a lot of lutein, 10mg three times a day. He said that was good. Perhaps that’s why the left eye (fingers crossed) seems to have stabilised.
So it was on 7 March I was once again driven to the eye hospital, by my son this time. The eye test was done again and this time I read one extra letter with the left eye. With the right, everything a blur as it has been for the past forty years since my accident. More drops and then into a small treatment room. The usual checks to make I was the right person. I did point out that my file would be the one with “Wimp” written across the top! I’ve always hated things near my eyes so this is a bit of a torment. Loads more drops, both anaesthetic and antiseptic. Face wiped with iodine swab, a cover put across my face leaving just the right eye exposed. What looks like a spatula used to lift my eyelids with a clip is put in to keep my eye wide open. Told to look hard left, slight sting as the needle penetrates the inner eyeball and then the fluid is there, floating around inside my eye and the needle is gone. Swiftly the clip and cover is removed and it’s over. I think the whole thing takes about ten minutes. Unpleasant but if it works it’s worth it.
Back again in early April for a repeat performance.
Who knows what the future holds? At the moment with a few minimal adaptations my life is normal. I prefer not to drive in the dark now, but if the road is well lit, and especially if it’s a road I know, it’s OK. I am more susceptible to glare now so night driving in the rain calls for extra caution.
I’ll do an update next month.
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Published on March 11, 2017 15:45 • 19 views

Patrick C Notchtree

Patrick C. Notchtree
Rambling rants and reflections of the author of “The Clouds Still Hang”, a trilogy telling a story of love and betrayal, novels that chart one man's attempts to rise above the legacy of a traumatic ch ...more
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