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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Keep an Eye on Your Eyes

I gave up trying to be perfect a long time ago. Too much like work. That is the reason I get it when people let things lapse. You meant to call the doctor about the vision change you think you are seeing but another day is gone and you never got to it.

Or how about this one? You don’t want to bother such a busy guy (or gal) with a silly, little worry. Then there is the forever popular, if I don’t think about it, it will go away!

Yep, dozens of ‘good’ reasons for not monitoring your vision and keeping your doctor in the proverbial loop. My reason for seldom if ever monitoring? (Come on! At least I own it.) My macula is so far gone I am back on biannual visits. I have it on good authority I will most likely not progress to wet AMD. Relief, yes, but I still sort of wish there was enough left I had to worry.

But that is me. There are plenty of you who are still at risk for developing wet AMD. There are also plenty of you who wish they had responded to early warnings before they lost vision. Since that second group are living testimonies to the fact things happen when we are not paying attention, how do we pay better attention to the progression of our disease?

For years the only game in town has been the Amsler Grid. This being the age of technology it is certainly understandable there are suddenly all sorts of machines and apps that not only do the job of monitoring but also narc on you and call your doctor! (Big Brother is even watching your eyes!)

I did a page on myVisionTrack a while ago. I downloaded it but could not play with it because it needed a script from my doctor. It was also for pay. So far this year we have replaced the washer and the dishwasher, rehabbed the pool and had Beastie Baby to the puppy doctor a few times; forgive me if I don’t invest in some of these things. If you use the service, please comment.

The new one I just discovered is ForeseeHome. This is manufactured by Notal Vision, an Israeli company. The company provides an electronic device that is connected to a telecommunication system. Everyday the patient takes three or four minutes to test her vision. If there is a significant change both the patient and her doctor are notified of the need for an immediate appointment.

ForeseeHome is again by prescription only. The frequently asked questions on the website suggest the unit and service are Medicare covered if you meet the eligibility. Apparently you have to be “dry AMD at high risk of progressing to wet AMD”. Am I sure what that means exactly? What I think it means is someone may have to jump through hoops to get Medicare to actually pay for it, but you can get one with a good argument.

If your doctor wants you to monitor much more closely than you are, one of the new electronic systems may be for you. Spend three or four minutes once a day. Eliminate the guesswork. Eliminate feeling guilty for ‘bothering’ the doctor. Help save your sight.

Written August 9th, 2017

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Put the Savor Back in Life

As my father got older I really started to worry about his nutrition. Left to his own devices Daddy would prepare a lunch of canned peaches in heavy syrup, a couple of cookies and a bowl of ice cream. It was like dealing with the tastes of a six year old! Sugar, sugar and more sugar!

I eventually learned taste loss comes with old age. Since sweet is the last flavor we can still taste, many of us go to a high sugar diet. Not all that great.

Lost of taste is just one of the sensory losses we experience. Science Digest in February of 2016 ran an article reporting 94% of older Americans have at least one sensory loss. 38% have losses in two senses and 28% have three, four or five sensory losses. Some of these deficits were mild but many of them were serious. The study found 64% of their sample ages 57 to 85 suffered with a significant deficit in at least one sense. 22% had major deficits in two or more senses.

Yikes! This is scary stuff!

Sensory loss takes the savor out of life – literally. It is one of the main reasons people may report a reduction in the quality of life.

Alright, now that we have had the stuffing scared out of us, what can be done about this? Most sources suggest getting any potential sensory loss evaluated medically. Some sensory problems cannot be treated but there are some that can.

Just because some of us have a vision loss that is currently not treatable does not mean the same holds true for other sensory loss. Don’t be fatalistic! Go for help.

Then, of course, there are rehabilitation services. I would like to say rehabilitation services and assistive technology is universally available, but I know better. If you cannot get services funded, use resources such as this website. We regularly try to find things that are free or relatively inexpensive that can help you cope with your vision loss. I expect there are websites for hearing impaired although I am less optimistic about sites on taste, smell and touch loss.

And speaking of smell and taste loss…

In Betrayed by our Bodies – Sensory Loss and Aging Dan Orzech suggests the use of odor detecting technology so we can avoid burning up in a fire (smoke detectors) or being asphyxiated by leaking gas.

Orzech suggested using a little butter or gravy to make the odor and flavor of food more chemically available. (A man after my own heart!). He also reported dehydration can make it harder to taste so make sure you drink your fluids.

Although not being able to see colors well is a hallmark of AMD, do what you can to make foods bright, colorful and visually appealing. Intensely colored foods are rated as more flavorful that dull colored foods.

Given the number of readers and FaceBook members we have, I would suspect more than one or two of you are experiencing multiple sensory losses. Don’t ignore them. There really are ways to put some of the savor back into life!

Written August 4th, 2016

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Jabbering

Greetings everyone! First of all, thank you for all of the birthday wishes [July 17th] and kind comments! I am amazed and overwhelmed. I sit here in my sun room, just kind of hanging out and having weird thoughts, and I sometimes forget there are real people reading the stuff. Probably better that way. I might become self-conscious. Not that that has ever happened in 64 years. No filters here. As in really NO filters. My mother used to ask me why I could not just LIE sometimes.

That said, nothing big planned for the b-day. Fighting rot and decay. I have my first physical therapy appointment for the rotator cuff tendinitis. Also, the container for the sand filter cracked and nicely soaked the garage with pool water so I am having the sand container replaced tomorrow.

Have you ever noticed you spend the first 40 years of life building and the next 40 trying to keep everything in working order?

My friend, the exercise enthusiast, and her family treated me to an escape/puzzle room last week. That was fun. We did the ‘tornado’ room. The premise is you have been hit by a tornado and you have to figure out how to open a locked door and escape before a second tornado strikes. This all involves finding clues and things you will need as well as figuring out a lot of ciphers. We ‘died’. We were only about ¾ of the way by the end of the hour and the second ‘tornado’ hit.

It was low light – a problem – and there were clues I could not read, but this is a team (up to 8) activity and I had people to do the fine seeing. I still have a brain and could sleuth out a lot of clues as well as have input on how to solve the puzzles. Enjoyed it. Would go again.

Low vision does not have to mean no fun.

And continuing to just jabber along here, I downloaded the Near Sighted VR app from Google Play. Lin sent me the cardboard goggles last week. My husband cut the hole for the camera to see through so it would actually be somewhere near centered. I downloaded the app. Nothing to that and the app is free, free, free! [Lin/Linda: it worked better for Sam at The Blind Spot and he says with some upgrades which he suggests, he thinks it will be an ‘awesome app’. Click here to see his review of it on YouTube.]

Not as enthralled with it as I was hoping to be. Not sure if the new phone (Hello, Moto!) does not have a decent camera or what the problem is, but I thought the image was pixel-y and a little wavy. Being a great one for motion sickness I am not sure I could use it very long without having an ‘incident’.  [Lin/Linda: there is also an app for iPhones called SuperVision Cardboard.  Click here for more information.]

Once again, although I would love to believe I am, I am not the final word on this stuff. I think we need other input on these products. Please let us know if you have tried anything and give us your input. My pans may be your picks and vice versa.

Last thing: I ran into a little gem called BookBub. They offer free and deeply discounted email books. Lin says she has used it for years and it is a good resource.

When dummy here set up her NaturalReader she failed to click on Kindle as one place she wanted to be able to download from. Cannot figure out how to go back and change the setting so I am in the process of also downloading the free version of NaturalReader. Hopefully I will be able to get into my Kindle account that way and give you info on how it works.

Once again, knowledge, insights, opinions? Please share. Support the cause. We are in this mess all together. Continue reading “Jabbering”

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Will I Go Blind?

“Will I go blind?” is one of the most common and emotionally-charged questions asked when a person gets a diagnosis of many of the retinal diseases such as Age-Related Macular Degeneration, Stargardt’s Disease (and others) that damage central vision.  I did several searches with different variations of the question and here are some of the the answers I found.

Terminology
  • This is just a partial list of terms, please go to the the complete list – click here:
    • Total blindness refers to an inability to see anything with either eye.
    • Legal blindness is a level of vision loss that has been legally defined to determine eligibility for benefits. The clinical diagnosis refers to a central visual acuity of 20/200 or less in the better eye with the best possible correction, and/or a visual field of 20 degrees or less. Often, people who are diagnosed with legal blindness still have some usable vision.
    • Vision loss refers to individuals who have trouble seeing, even when wearing glasses or contact lenses, as well as to individuals who are blind or unable to see at all.
    • Visual impairment is often defined clinically as a visual acuity of 20/70 or worse in the better eye with best correction, or a total field loss of 140 degrees. Additional factors influencing visual impairment might be contrast sensitivity, light sensitivity, glare sensitivity, and light/dark adaptation.
Links & Answers
  •  From http://www.southlandeyeclinic.com/FAQ/macdegen.html
    • “Will I go completely blind from AMD?
      No. You will never go totally blind from AMD. AMD affects only the central vision. Around the macula is the retina responsible for side vision (peripheral vision). The side vision lets you know what is around you. You will be able to walk around, dress yourself and do most daily tasks. Peripheral retina is not affected by AMD and there is no loss of side vision.”
  • From http://www.besteyedoc.com/milford/macular-degeneration-faq.htm
    • “Q.  Will I go blind?  A.  No, patients do not go blind from wet or dry macular degeneration. You can, however, unfortunately become legally blind which means that the central vision is poor enough to result in your better eye seeing no better than 20/200 vision. However, being legally blind is not the same as medically blind.”
  • From https://nei.nih.gov/health/maculardegen/armd_facts
    • “AMD by itself does not lead to complete blindness, with no ability to see. However, the loss of central vision in AMD can interfere with simple everyday activities, such as the ability to see faces, drive, read, write, or do close work, such as cooking or fixing things around the house.”
  • From http://www.nhsdirect.wales.nhs.uk/encyclopaedia/m/article/maculardegeneration/
    • “AMD doesn’t affect your peripheral vision (side vision), which means it will not cause complete blindness.”
  • From http://www.brightfocus.org/macular/chat/what-you-need-know-about-dry-age-related-macular
    • “GUY EAKIN (interviewer): So you say 10 to 15% progress to the wet form, I like to hear 85 to 95—85 to 90 don’t progress to the wet form, but it’s the same message either way. We know that many people out there are fearful that AMD will blind them, it’s described in so many places as a blinding disorder and I understand that has some technical context to it that may, it may not be the complete story just to say that it’s blinding.  So what do you tell patients when they ask you, “Will I go blind?”
    • “GAYATRI REILLY (The Retina Group of Washington, “who has excelled in research, patient care, and educating other eye care professionals about treating diseases such as age-related macular degeneration) : Well, you know, I think it’s a question I get every single day, and it’s extremely important to address.That answer has changed over time, as you know. First of all, with even the most severe form of macular degeneration, this affects the central vision only, which—the difference between that—you use your peripheral vision less often, but when you’re not focused on something, you still see other parts in your vision, and that’s your peripheral vision, and that will always remain intact with even the most severe form of macular degeneration.  And the reason why this answer has changed over time, it was only as little—about 15 years ago, we had no treatments at all for wet macular degeneration, and the central part of the vision was something that we would expect for patients to lose, but now, over the past 10 years with research, and the treatments have changed dramatically, and what we can actually tell patients and have the expectations are that we hope to maintain good vision—and good vision including vision that’s capable for driving, for reading, and that’s the expectations that I would hope with early diagnosis.”
  • From https://www.secondopinion-tv.org/episode/macular-degeneration

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AMD & Autoimmune Disease – A Connection?

Hello, folks! Here we go again with a topic that is so far over my head I never should have even attempted it. Oh well, one of our readers asked the question. And besides, “a man’s reach should exceed his grasp or what is a heaven for?” (Robert Browning – and one of my favorite quotes😊)

So you have again been forewarned. I am slogging through medical research and I have no clue what 90% of what I am reading means. If you get confused, just consider who is doing the interpretation!

The question was: can AMD be considered an autoimmune disease?

The answer is probably, maybe. They are working on that now. Can I get back to you? Like next year, maybe?

I am sure we all remember the alternative pathway of the complementary immune system. 😱 From what I remember things this system deals with include inflammation and the release of macrophages (big eaters) to clean up the mess. Macrophages are sort of the carrion eaters of your body.

According to webMD inflammation is supposed to protect us from foreign substances. It occurs in response to chemicals and involves an increase of blood flow to the affected area. Fluid leaking into tissues can cause redness and swelling. Swelling can cause damage.

Autoimmune conditions occur when there is no foreign invader and the body starts to identify its own tissues as something foreign. Healthy tissues come under attack.

AMD is an inflammatory disease. It would make sense that with chronic inflammation, the signaling system could easily go awry and result in ‘friendly fire’ casualties. By my way of thinking, this might be even more likely because both inflammation and macrophages are part of the innate immune system. The defenses of the innate immune system deal with nonspecific targets.

Morohoski et al. wrote a paper on autoimmunity in retinal degeneration. He (she? It is K. Morohoski) states “a growing body of evidence indicates that AMD pathogenesis too involves ocular inflammation and autoimmunity.”

But it is not just inflammation and the complementary immune system they are now suspecting. Now they are even suspecting involvement of the adaptive immune system. That is the one in which defenses are ‘made to order’ as opposite to ‘one size fits all’. Think antibodies and developing resistance to a disease; that immune system.

Anyway, now they are thinking damage may cause a breakdown of the blood/ brain barrier – remember the eye is the only part of the brain you can see with the naked eye! – and antibodies may be released into the eye. Some of these are retinal autoantibodies. These are proteins that will attack the retina of the host.

So, in answer to the question: it seems reasonable AMD is an autoimmune disorder. It seems probably that not only is the non-specific, innate immunity system in the mix but the specific, adaptive immune system is involved as well. Is it written in stone? Nope? Are they ready to uncategorically declare AMD an autoimmune disorder? Not yet, but I would predict it is coming. Continue reading “AMD & Autoimmune Disease – A Connection?”

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