Category: Symptoms

Do As I Say

Happy Saturday! Welcome to Presidents’ Day weekend! (In real-time, of course.)

I had a nice, long conversation with a representative of the International Macular and Retinal Foundation (IMRF) last evening. (Based in Maine. With a name like that you would think London, Paris, Zurich.) They came upon this website and liked it! (Flattery may not get you everywhere with me, but….OK, so I’m an attention junkie; OK??) Thank you IMRF.

The IMRF publishes self-monitoring tools under the name KeepSight. They sent me a cute, little booklet with basic AMD information, puzzles and different monitoring grids. They are free. IMRF is hoping to spread them around to not only us AMD types but also to doctors’ offices and other places people at risk may congregate. What they are trying to do is stop the progress of dry to wet before severe damage is done.

OK. Let’s stop here for a second. Don’t freak out. According to Bright Focus, only 15% or so of us with dry progress to wet. Lin just wrote a piece on the two types of advanced AMD. They are wet and GA, geographic atrophy. The second one is me; remember? I just got moved to appointments every six months because with my level of macula loss through GA, my chances of changing to wet are slim. Thank God. The more severe damage is done in wet.

Anyway, in the interest of full disclosure – in other words, I can’t lie to save my life so I stopped trying! – I admit I am not big on self-monitoring. My chances of progressing to wet are slim and I am, by nature, a bit of a rebel. However, that is not going to keep me from pulling the old “do as I say, not as I do!” trick on you.

Most of you have a fair amount of macula left and are in the earlier stages of the disease. Do you know you are not going to be part of the 15% that goes wet? I sure don’t. Which means you should self-monitor your vision.

Mayo Clinic gives the following symptoms for wet AMD and an eye bleed:

  • Unusual distortions – that means the wiggles and things with the tops cut off and moved over
  • Reduced central vision
  • Decreased intensity and brightness of colors
  • A well-defined blurry or blind spot in your visual field
  • A general haziness of vision
  • And the important one: Abrupt onset and rapid worsening of symptoms.

In geographic atrophy my macula has been slowly deteriorating. The two times I had a rapid decline in vision scared the daylights out of me and sent me off to the retinologist the same day. If you have a rapid decrease in vision, you should do the same.

The KeepSight booklet has some nice grids and examples of what a problem may look like. If you can’t get a hold of one of their booklets, at least print off a copy of the Amsler Grid and tack it on the fridge. Then use it! Remember, do as I say, not as I do! Continue reading “Do As I Say”

It’s Dark in Here!

Don’t you love it when you come inside to a darkened room and – to put it bluntly – can’t see shit? It is sort of embarrassing. You stand there looking gobsmacked that everything has gone black. You know you are in the way, standing in the freakin’ vestibule, but you’re afraid to move for fear of falling over something.  ‘Tis a dilemma and it only gets worse because your vision takes FOREVER to come back and people start asking if you are all right.

You now have an answer to that question. Just tell them you are having problems with the process that includes dilation of the pupils, increase in the sensitivity of the retinal rods and regeneration of rhodopsin.

Specifically, your dark adaptation stinks. Then ask them to lead you off to somewhere you can sit until you return to your senses – or more accurately, your senses return to you. After that explanation, they should be happy to leave you alone!

If you have AMD I would expect you have experienced delayed dark adaptation. Somebody’s headlights get you full in the face and that’s all she wrote. You come in from the garden and have to stand against the counter for ten minutes. Heaven forbid you have to go to the bathroom! Then you get to cruise furniture and the wall and hope the dog is not napping in the hallway.

It has now been confirmed that AMD and poor dark adaptation go together. (Can I say “Well, duh”?) In fact, it has been confirmed that poor dark adaptation is actually a harbinger of AMD. They are saying poor dark adaptation is a functional biomarker for AMD.  A biomarker indicates a disease state most likely exists. It is like smoke and fire.

It would appear poor dark adaptation can be used to our advantage. It may someday be measured in routine eye examinations. If a patient has delayed dark adaptation, some future treatment to prevent AMD can be started right away. That way dark adapting problems will be the only symptom of the disease the patient ever has to experience. Pretty nice thought. [Lin/Linda here: it’s no so far off.  Click here for an article that talks about a new vision test that does test for dark adaptation.]

And since I still need about 150 words and I know you have inquiring minds, let us ask what is rhodopsin?  Rhodopsin is a purplish red pigment found in the rod cells. Rhodopsin is important for sight in dim light. It is quickly depleted in bright light. Rhodopsin Is supposed to regenerate in dim light but does not do so all that well in certain disease processes.

Another interesting fact? Rhodopsin comes from beta carotene, basically vitamin A.  Beta carotene is found in carrots. That means that, once again, your mother was right. You really did need to eat your carrots to maintain eye health. You never saw a rabbit with glasses; did you?

You may now all groan. Continue reading “It’s Dark in Here!”

Highlight: Here’s a GREAT website especially for those with wet AMD

Lin/Linda here: Every once in a while I find a website and/or Facebook page that stands out.  Here’s one of those.

The website and Facebook page are called The Science of AMD: Our vision is to save your vision.  It is presented by the Amgiogenesis Foundation. Their headquarters are in Cambridge, Massachusetts.

Click here to go to the website. From there, you can connect to Facebook, Twitter or YouTube using icons in the upper right corner.

What is angiogenesis? From the website: “Angiogenesis is the process used by the body to grow blood vessels. In healthy adults, normal angiogenesis occurs in healing wounds and reproduction, but in all other situations, it is abnormal.”

It’s what causes wet AMD: “Wet AMD is caused by abnormal angiogenesis, when new vessels grow under the macula, disrupting the central region of the retina. These new blood vessels bleed and leak fluid, causing the macula to bulge or lift up from its normally flat position, impairing central vision. If left untreated, scar tissue can form, and central vision is irreversibly lost.” 

What’s so special about the website?
  • From a design standpoint, you can change the size of the font and the color of the font & background, you can choose a version of the site in any of 7 languages as depicted by flags, it’s easy to navigate.
  • Format of content includes printed text, videos, audio, graphics, PDF files and more.
  • This is not just for the US, there are resources available for other countries as well.
What information can I find there?

There’s a menu with Learn, Treat, Resources, Connect, About, Donate.  I suggest you start at Learn!   The emphasis is on how angiogenesis causes wet AMD and what can be done to treat it.

OK, now go and explore! Let me know what you think!

Highlight: What is Myopic Macular Degeneration?

There are quite a few eye diseases that cause degeneration of the macula. The most common forms of macular degeneration are defined by age, at least in part:  1) Age-Related MD (AMD or ARMD) and 2) Juvenile MD (JMD) – several inherited and rare diseases that affect children and young adults including Stargardt’s Disease, Best Disease, and juvenile retinoschisis.

There is another form of macular degeneration called Myopic Macular Degeneration or Myopic Maculopathy.

What is myopia?

If you have trouble seeing things far away like road signs, your eye doctor may have said that means you are nearsighted because you can see things near better than far.   Some people call it being shortsighted.  The medical/optical term is myopia.

Top of diagram shows normal eye & vision. Below, myopic eye and vision.

Myopia occurs when the eyeball is too long relative to the focusing power of the cornea and lens of the eye (see diagram above). This causes light rays to focus at a point in front of the retina, rather than directly on its surface.   It can also be caused by the cornea and/or lens being too curved for the length of the eyeball. In some cases, myopia is due to a combination of these factors. Click here for more information.

There are different degrees of myopia: mild, moderate and high (also called pathological myopia).   The higher the degree, the higher chance of the degeneration of the macula.  Click here for some other risks for high myopia including retinal detachment, macular detachment, glaucoma and macular holes.

Myopic Macular Degeneration

People with high myopia/pathological myopia are at risk for damage to the macula from the stretching of it as the eyeball grows throughout life.  Here’s a good description of what happens: “As the eyeball grows and stretches, it may also cause an area of atrophy and/or cracks in the layers under the retina. These cracks can serve as conduits for abnormal blood vessels to grow under the retina. These vessels can hemorrhage and scar which is similar to what happens in wet macular degeneration. The onset of the nets of abnormal blood vessels, called Fuch’s spots, often occur in the 4th to 6th decades of life. Approximately 5% of pathological myopia patients develop Fuch’s spots, which lead to damage in the macular region of the eye and a subsequent loss of central vision.” From http://www.lowvision.org/Pathological%20Myopia.htm

Not all people who are myopic get Myopic Macular Degeneration.

Click here for an explanation of how the atrophy can occur as well as how the blood vessels grow into the macula.

The symptoms are similar to AMD & JMD as well.  Click here to learn more about them.  This article will take you to stories of people who have Myopic MD.

Click here for a first-hand account of the disease from a person with it.

Other links:

Myopic Macular Degeneration

American Academy of Ophthalmology Diagnosis and Treatment of CNV in Myopic Macular Degeneration

Degenerative Myopia

Treatment Patterns for Myopic Choroidal Neovascularization in the United States, article published July 2017 edition of AAO Journal (AAO is American Academy of Ophthalmologists).

 

 

Highlight: Does wet AMD start as dry?

There are differing opinions and interpretations of what those in the field of macular degeneration have learned.  The links below certainly don’t represent all views, of course, but are an example of some of what you will find.

The important point is that it is CRITICAL to get your eyes examined as recommended by your doctor and to monitor your vision between exams. Click here to find out how to do that.

From: http://www.webrn-maculardegeneration.com/macular-degeneration-stages.html

“Advanced AMD is either a break-down of light sensitive cells and supporting tissue in the central retinal area (advanced dry form), or the development of abnormal and fragile blood vessels under the retina (wet form).”

From: https://www.macular.org/dry-vs-wet-macular-degeneration

“About ten percent of all cases of Age-related Macular Degeneration become “Wet” AMD (typically a person has dry AMD first and progresses toward wet).”

From: https://nei.nih.gov/health/maculardegen/armd_facts

“There are three stages of AMD defined in part by the size and number of drusen under the retina. It is possible to have AMD in one eye only, or to have one eye with a later stage of AMD than the other.

Early AMD. Early AMD is diagnosed by the presence of medium-sized drusen, which are about the width of an average human hair. People with early AMD typically do not have vision loss.

Intermediate AMD. People with intermediate AMD typically have large drusen, pigment changes in the retina, or both. Again, these changes can only be detected during an eye exam. Intermediate AMD may cause some vision loss, but most people will not experience any symptoms.

Late AMD. In addition to drusen, people with late AMD have vision loss from damage to the macula. There are two types of late AMD:

In geographic atrophy (also called dry AMD), there is a gradual breakdown of the light-sensitive cells in the macula that convey visual information to the brain, and of the supporting tissue beneath the macula. These changes cause vision loss.

In neovascular AMD (also called wet AMD), abnormal blood vessels grow underneath the retina. (“Neovascular” literally means “new vessels.”) These vessels can leak fluid and blood, which may lead to swelling and damage of the macula. The damage may be rapid and severe, unlike the more gradual course of geographic atrophy. It is possible to have both geographic atrophy and neovascular AMD in the same eye, and either condition can appear first.”

From: http://www.avruc.com/macular-degeneration.php

“The macula is the central part of the retina and allows us to read fine print clearly and see colors vividly. It is this area of the retina that deteriorates in ARMD. There are 2 forms of ARMD. Everyone who has macular degeneration starts out with the dry type and 20% progress to the wet type over the course of a lifetime. “

From: http://www.youreyes.org/eyehealth/macular-degeneration

“Can the dry form turn into the wet form?
Yes. All people who had wet form AMD had the dry form first. 

The dry form can advance and cause vision loss without turning into the wet form. The dry form also can suddenly turn into the wet form, even during early stage AMD. There is no way to tell if or when the dry form will turn into the wet form.

Can advanced AMD be either the dry form or the wet form?
Yes. Both the wet form and the advanced dry form are considered advanced AMD. Vision loss occurs with either form. In most cases, only advanced AMD can cause vision loss. 

People who have advanced AMD in one eye are at especially high risk of developing advanced AMD in the other eye.”

Please see your doctor for regular exams and between exams, check your vision at home.

Highlight: I have drusen, does that mean I have macular degeneration?

Answers

 

“No, not necessarily. About 50% of the population will show hard drusen and almost 100% the population above 50 will have at least one druse, but many will not develop macular degeneration. An examination by your doctor will help you better understand your risk and what to do about treatment.”

 

“Not necessarily. Many individuals with some drusen do not go on to develop the visual symptoms of ARMD. From a clinical standpoint, drusen must attain a threshold in numbers, size, and shape for them to become a matter of concern to ophthalmologists.” This article goes on to talk about drusen at the various stages of AMD, the difference between hard and soft drusen and can you prevent, slow down or reverse AMD.

Article answers: what are drusen, types of drusen and questions for your doctor.

Zigzags

Hi. I have done as much as I can do on that report. The scoring manual for one of the tests is in the office. Plan ahead, Sue! I am still not used to not having everything in the hatch of the car.

Before grabbing an evening snack, I will get started on my GuideMe, well, guide. The second paragraph of the welcome already begs comment. To quote: “the intent is to simulate as accurately as possible a post-diagnostic consultation with a doctor or therapist.”

Now my local ophthalmologist is very competent and a sweetheart and Regillo is scary smart and accomplished but there was never, ever mention of actually teaching me a damn thing! Not really. What I know Lin and I dug up on our own.

Lin has found that to be true with most of our subscribers and group members. We are the closest things we have to AMD educators. We are doing it for each other. Where did these people find medical professionals to do ‘post-diagnostic consultations’?!?! I want to know.

End of rant. However, for future reference, AMD educators are a great idea. Somebody should actually do it.

Moving on to the visual symptoms link of GuideMe, I am thrilled to say I don’t have the waves. I have gotten seasick in a kayak on a sheltered cove. I do not need waves in my vision!

I also don’t have a totally blank space in the center of my vision. Maybe it is closure and being done by my brain and not my eyes, but some things ‘bleed’ through. What my hope is is there will be enough live photoreceptors left to let me fill in that hole should I ever get the RPE stem cells. Do I know the divot that is my geographic atrophy is getting a bit large? Yep, but a girl can hope. Things aren’t totally gone there….yet.

Photopsia was a term I had never heard of. My mother had them with migraines and just called them the zigzags. According to Wikipedia – you know I always go for the most erudite source?- photopsia is the presence of perceived flashes of light. They are not only associated with migraines but also with posterior vitreous detachment (PVDs), retinal break or detachment, occipital lobe infarction, and sensory deprivation. Migraines, by the by, can be with or without pain.

Speaking to the migraines first, I had a couple of incidents of  what I thought were migraines  with no pain but photopsia the other week when I was stressed. Since my mother had zigzags I just assumed migraine.  I did mention them to my general practitioner but now I am thinking I should also give a holler to my ophthalmologist. I would suggest you do the same should you ever see flashes or zigzags.

Why? Well, GuideMe says a retinal detachment is a ‘shower of sparks’ but I personally would not want to be standing around trying to figure out if it satisfied criteria while MY retina detached. Also, looking at that list above, I see posterior vitreous detachment which can have some symptoms similar to retinal detachment (don’t make the call of what it is yourself). Also with a really good tug, posterior retinal detachment could potentially lead to a macular hole. And with all that good news, I imagine you really don’t want to be reminded an occipital lobe infarction is a brain bleed in your sight center; do you? Didn’t think so. Not thinking many of us spend time in sensory deprivation tanks so I won’t address that one.

That is it for that section. I am going to email the good doctor and then go to bed.

Remember, I am probably not typical (have never been?) and your eyes are not required to be like mine. I tell you what is happening with me only as one example of what might be expected.  I have been told it can be normalizing….or not!?

Night!

Continue reading “Zigzags”

Fairy Tales

The more you talk (and moan and complain and lecture) about AMD, the more people you find who have it. I guess that is the power of advertising.

Anyway, today one of the teachers sat down across from me at lunch. She had just been diagnosed with dry AMD. Her optometrist told her that her eye was ‘drying out’. What the hell????? [Lin/Linda: with wet AMD, there can be a ‘drying out’ especially after injections but not with dry AMD.]

In my usual ‘understated’ and ‘subtle’ fashion I told her either he did not know what he was talking about or he had given her the ‘idiot’ explanation. Really.

Nothing ‘dries out’ in AMD. Old. Yeah. Visually impaired. Yep. Stupid? No. We really can handle more than the fairy tale explanations.

I put her on to this kickass website I know ?. She is an intelligent woman and can handle ‘real’ information!

Another thing she said was that she had noticed my eyesight had gotten ‘better’. Like I said, her doctor had obviously given her the fairy tale version of AMD because we all know there ain’t nuthin’ getting better about it!

It made me wonder, though. What exactly had she noticed? I know several of my doctors had said performance on an eye chart will ‘improve’ because patients memorize the chart. See the thing 600 times and you almost can’t help but memorize it. Maybe they should have A and B versions? But I digress… Is it possible she has seen an improvement in my functional vision? You always hear practice makes perfect. Have I been becoming a more ‘perfect’ visually impaired person?

Since I tend to be wary of anything that promises you the world and costs the proverbial arm and leg, I ignored the visual training programs that I found online and honed in on some things that were called perceptual learning and sensory efficiency. These are things they teach to kids, so I should be able to handle them. Also, the one website had links to suggested activities for no cost. That is a synonym for one of my favorite words: free!

Sensory Efficiency by Carrie Willings listed all sorts of ways to enlist your other senses in an effort to ‘see’ but it also talked about some of the visual perceptual skills you learn about in educational psychology but have not really thought about in a while. To wit: Would more purposeful visual scanning be useful? Am I doing it? Am I sharpening my visual discrimination skills and looking for detail more purposely? What about visual closure and figure-ground? Visual memory? Maybe getting some ‘kids’ games’ and practicing these skills would help? Maybe I have been unconsciously paying better attention to them since losing sight?

Like many things in life, I don’t have the answers to any of these questions. I know I have become more cautious when working visually. I try to see differences and sequence mindfully – a word with many uses!? It might be helping.

OK. Right now it is after bedtime and I have found several interesting things to read – including an article on reading – and try to digest. I will get back to you about this visual perceptual business. Dunno if any of it will help but I doubt it would hurt. Continue reading “Fairy Tales”

I Have Macular Degeneration…Now What?

June 2023 There’s an announcement that since Sue has not written any new journal pages for some time, the site has been archived until we can decide if the work necessary to make sure all information is accurate and up-to-date can be made. In the meantime, you’ll get some pages ‘not found’ or ‘private’ until that decision has been made. The emphasis for several years has been on the Facebook group.

Where can I quickly find information about AMD?

One of the best resources available is from the Prevent Blindness organization’s website called Guide Me.  You answer a few questions and you will get a personalized guide with important aspects of AMD based on your answers:

Click here to go to Guide Me.

Click here to watch a 4-minute video that explains what AMD is, what causes it, and what can be done about it.

Click here for a good list of Frequently Asked Questions.

Click here to go to a great site maculardegeneration.net where you will find articles written by people with macular degeneration and caregivers. They also have a Facebook page.

What other websites are helpful?

Here are some of our favorites:

Click here to find out should I take the AREDS or AREDS2 supplements?

Click here for a video that covers important information about AMD

Click here for a description of dry vs. wet AMD (we are not recommending any products in this article, but be aware that the site may profit from some products they advertise.)

Click here for an explanation of the stages of AMD (we are not recommending any products in this article, but be aware that the site may profit from some products they advertise.)

Click here to read about what happens if you have AMD in only one eye

Click here for some answers to common questions about depression after diagnosis

Click here for an article about how vision rehabilitation helps prevent long-term depression

Click here for a very comprehensive page about wet AMD

Click here for a very comprehensive page about dry AMD

Click here for an article about how fast AMD progresses

Click here for 10 questions to ask your doctor

Click here to find a support group (I’ve been told that this site may not be up-to-date. Ask your eye specialist for a referral.)

Click here for eye-healthy foods including a Healthy Vision Grocery List (2/14/2022 site wasn’t formatting properly.) Click here to read the answer to the question ‘What should I be eating or not eating to hopefully slow the progression of my AMD?’

Click here to find out what vision changes/symptoms to look for (we are not recommending any products in this article, but be aware that the site may profit from some products they advertise.)

Click here to find out about the people who can help you (what are the differences between the types of eye doctors, do I need to see a specialist, etc)

Click here for tips on how to make the most of the vision you have (section toward the bottom of the page; lots of other good information on the whole page)

Click here for a FAQ (Frequently Asked Questions) from the Macular Disease Foundation Australia.

Click here for a FAQ (Frequently Asked Questions) from our Facebook group.

Where can I do more research?

You can do searches on the Internet – there is a LOT of information there.  We have done a lot of research and here’s how you can find it.

Click here to go to How to Navigate and Search Our Website.

Join our very active Facebook group Our Macular Degeneration Journey. There’s lots more information there as well as support whenever you need it.

How do I move around on the website?

Click here to go to How to Navigate and Search Our Website.

To find about more about me, about Sue, about our project, go to the menu at the top of the page.

Reviewed 02/14/2022

 

 

 

 

Highlight: What is Advanced Macular Degeneration?

About 10 years ago, my elderly father was diagnosed with dry AMD and then later we were told it was ‘advanced’ and that he had ‘geographic atrophy’.  At the time, I didn’t understand what that was.

Here’s an excellent article about what those terms really mean.  It’s on the great website WebRN: Macular Degeneration.  If you haven’t looked at it, I recommend that you do after you read this article.

Advanced AMD & Geographic Atrophy

Welcome!

June 2023 There’s an announcement that since Sue has not written any new journal pages for some time, the site has been archived until we can decide if the work necessary to make sure all information is accurate and up-to-date can be made. In the meantime, you’ll get some pages ‘not found’ or ‘private’ until that decision has been made. The emphasis for several years has been on the Facebook group.

You are here to follow the journey & misadventures of a woman named Sue who became visually impaired with Age-Related Macular Degeneration (AMD or ARMD) seemingly overnight.   Join in the tears and laughter. Join in the discussion. Learn more about Age-Related Macular Degeneration. Find resources for your own journey or that of someone you know.

We’re going on a bear hunt….can’t go over it, can’t go under it, got to go through it.

Sue is a psychologist trained in Dialectic Behavior Therapy (DBT) and is using it to help her cope with this vision loss. Her trusted and invaluable friends bring computer, research and occupational therapy skills to this endeavor. Yeah team! We hope you benefit from the fruits of our labors.

We are not offering free psychological therapy.  We are not medical people.   Please read the disclaimer.

This website is divided into 4 parts:

  1. If you have just been diagnosed or if you are beginning your research, here’s a place to start in I Have Macular Degeneration…Now What?
  2. Sue’s journal pages which are like chapters in a book
  3. Highlights & News which are basically blog posts
  4. Links to helpful resources (still under construction)

For those of you who aren’t familiar with websites or blogs like this, to ensure that you will be notified when information is added to the website, you must subscribe by email.  On a laptop & most tablets, you’ll find the place where you can do this in the right-hand column.  On a smart phone, you will find it below the content for the page that you are looking at.

We are still learning, we don’t know everything about this challenging disease.

Courses Coming Soon!

Thanks!

Thanks to Lesley B., Sally R., Dave M. and Gerry M. for going through the website looking for links that didn’t work, things that didn’t read well and typos.  We couldn’t have done it without you.

 

What Do I Do Now?

So, since this is all about me, let’s talk about me. The week following my ski trip, my vision went to hell. I am an avid reader and had just purchased two paperback books by best-selling authors. I had not touched the one and had 30 pages to go in the other. It was that fast that I lost my ability to read standard print. Before I gave up on the paperbacks I was standing in the middle of the upstairs hallway directly under a light. It was all I could do to make out what I was reading.

My vision went to hell-all of a sudden, I couldn’t read standard print!

I am a professional Psychologist but that means something different for me than it means for the general public. I am an assessing psychologist. I administer and interpret all sorts of tests. Intelligence tests, adaptive behavior tests, achievement tests, personality tests – this word ‘tests’ has been my bread-and-butter for 38 years.

One of my jobs is as a School Psychologist. I was not able to see the testing material. Fourth graders with reading problems started to correct me. There was a real problem here.

Fourth graders with reading problems were correcting me.

I sent a note to my ophthalmologist. I told him nothing was working. I wore my contacts with my glasses. Did not help. I wore my glasses with bifocals. That did not help either. There was something very wrong.

I was also noticing an exacerbation of other symptoms. I was having trouble recognizing people. Earlier, if I looked at someone, my right eye was doing pretty much all of the seeing. Looking at them with my left eye only, their faces would white out. Now, unless you were within 6 feet of me, I could not see you. Your face was simply a white blob.

I was having trouble recognizing people.

Click on the photo to get a larger version

A wild thing that was happening I learned later is called Charles Bonnet Syndrome which causes visual hallucinations. I have had trouble recognizing what I was seeing from a distance. Walking the dog and looking across the field, I would often comment that I was seeing something but I had no idea what the hell it was. The dog generally wasn’t very helpful unless it turned out to be another dog. The rest of the stuff she refused to identify for me.

I would see something and not know what the hell it was or would see bunnies & kitties that were not there or would be plastic bags stuck under trees.

Anyway, Charles Bonnet Syndrome hallucinations involve this interesting phenomenon in which your mind tries to make sense of what it cannot properly see. I started to see weird shit. Nothing scary. Just nothing that made sense. Definitely, nothing that was actually there.

When I discussed this with a friend at work, she was laughing at me. The reason for this was that I seem to see a lot of bunnies and kitties that simply were not there or were plastic bags stuck under trees. I guess she considered that if I had to have hallucinations it’s nice that they are of something pleasant.

But not everything about the sudden change in my vision was anywhere near pleasant. In addition to the excessive problems I was having doing anything vaguely related to reading and close work, I started to have panic attacks.

I started to have panic attacks.

People who know me were sort of surprised that I started with panic. I defended myself to my boss by telling her that they were ambushing me in my sleep. This was true. I could use some mindfulness techniques and distractions, which we will discuss later, to keep the panic at bay during the day but my defenses were down at night. I was waking up to three times a night in a state of pure terror. It was this internal alarm system that made me make an emergency appointment with my ophthalmologist. I had been trying to wait until my regular appointment the next week but I was not going to make it. There was something very wrong. It had to be taken care of immediately.

I was waking up to 3 times a night in a state of pure terror.

Written February 2016. Updated September 2018.

Continue reading “What Do I Do Now?”

Resources

June 2023 There’s an announcement that since Sue has not written any new journal pages for some time, the site has been archived until we can decide if the work necessary to make sure all information is accurate and up-to-date can be made. In the meantime, you’ll get some pages ‘not found’ or ‘private’ until that decision has been made. The emphasis for several years has been on the Facebook group.

2/14/2022 Because of the rapid and constant growth of our Facebook group, I cannot keep this list updated.  I have a large amount of information available in the Facebook group in Guides which are like chapters in a book or lessons in a course. Plus, in 3 years, the amount of information in the posts and comments is quite substantial. I recommend that you join us there where you can get the information and the support to help you in your journey.  Thanks for understanding. Hope to see you there! Lin/Linda…
I’ve added some pages from that group that might be of interest to you.

Frequently Asked Questions

Click here for the list of Frequently Asked Questions from our Facebook group.

AREDS2-based Supplements

There are several pages on the site that explain what AREDS2 means and who the AREDS2-based products are for. Click here to go to a list of articles.

AREDS2-based Supplements With 0 or 25mg of Zinc

Click here for the list.

Navigating

There are a lot of links here.  I’ve set up this page so that when you click on a link (words that are underlined & in blue or green), a NEW tab will open in your browser and this page STAYS WHERE IT IS.  When you are done with the new page you opened, just close it.  You do NOT need to use the back option.  If you click on a link and the new page replaces this one, I’VE MADE A MISTAKE so please let me know by sending me an email at light2sight5153@gmail.com.  Let me know exactly which link or links do not open a new tab or window.

Errors: If you click on a link and you get a ‘page not found’ error, please let me know by sending me an email at light2sight5153@gmail.com.  Let me know exactly which link or links do not open a new tab or window.

Additions: If you have a link you’d like to add, please email at light2sight5153@gmail.com.

Topics-click below to move to a topic

Links We Like

  • Click here for a GREAT resource where you answer some simple questions and you get a customized guide based on your responses
  • Click here for a great glossary
  • Click here for Low Vision Resources: A List of Lists (such as 8 ways to slow AMD, 15 tips for family and friends, etc)
  • Videos
    • Click here for several videos
    • Click here for the UK Macular Society’s Say Hello to Mac
    • Click here for one that uses illustrations and animation (explains how wet AMD progresses and how the injections work)
  • Click here for a description of dry vs. wet AMD (we are not recommending any products in this article)
  • Click here for an article about depression after diagnosis
  • Click here for a very comprehensive page about wet AMD
  • Click here for a very comprehensive page about dry AMD
  • Click here for a FAQ (Frequently Asked Questions) that answers a long list of questions such as ‘will resting help my eyes?’, ‘Can I see for myself if my retina or macula shows any signs of damage before I have symptoms?’, ‘why don’t new eye glasses help?’, ‘what is meant by degeneration?’, ‘is a macular hole the same as macular degeneration’, ‘I have had dry MD for years. Does this mean I’m going to get wet MD too?’, ‘No one else in my family has MD. Why did I get it?’, ‘can drusen be treated?’, ‘I have changes on the Amsler Grid, does this mean I have MD’, ‘I have Wet MD but my Doctor says there is nothing he can do or no treatment available. Why is this?’
  • Click here for a short introduction to stems cells, what they are and how they can be used.

See what vision is like at the various stages of AMD

Click here to find ways to see simulations of what vision loss due to AMD is like at various stages.

Glossary

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Websites devoted to AMD and Other Forms of Macular Degeneration

listed in no particular order

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Websites containing information about AMD and Other Forms of Macular Degeneration

listed in no particular order

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Support

I’ve not been able to verify if these are kept up to date. Let me know if you find that they are not or if you have one  you’d like to add.

Message Boards including ones from
By postal mail

I don’t know if these are still accurate.

  • Association for Macular Diseases
    210 E. 64th Street
    New York, NY 10021
    (212) 605-3719
    – Offers education and information on macular disease through seminars, newsletters, and a hotline. Offers counseling to patients and their families.
  • Macular Degeneration International
    is now a part of Foundation Fighting Blindness
    Toll Free Helpline 1-800-683-5555
    EMail: MDInfo@blindness.org
    – Provides support for people affected by inherited macular degeneration including Stargardt’s disease.
Start Your Own
  • Vision Support Group-download video presentations  This group provides free information and support through presentations to groups of senior adults affected by macular degeneration and related retinal diseases.  You can join & get access to their materials so you can use them in your own group.
On the phone/telesupport

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Where to find services

  • In the US: click here to find a low vision center, retina specialist, state agency, ophthalmologist
  • In the UK: click here to support services (listed on the right side of the page) such as skills for seeing, counseling, access to treatment…and more
  • In the US: click here to search for a wide variety of services (more than the link above)
  • In Australia: click here to find an ophthalmologist and optometrist
  • Worldwide: click here for resources worldwide

Resources for Students

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Books and reading materials

Specific Titles

Sources of Books

Formats: Braille, large print, e-book and audiobooks

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Videos

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Personal stories of living with AMD

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Online newsletters

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What is AMD?

Wet Form
Dry Form
How fast does AMD progress?
  • A good article about how difficult this is to answer
  • Great video that explains why early detection is important especially when detecting the change from dry AMD to wet

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What is Stargardt’s Disease?

Also called Stargardt’s Disease (SD) or Stargardt Macular Dystrophy (SMD) or Juvenile Macular Degeneration (JMD), it’s an inherited, juvenile macular degeneration. The progressive vision loss associated with Stargardt disease is caused by the death of photoreceptor cells in the central portion of the retina called the macula.

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The Science Stuff

Role of RPEs

Geographic Atrophy

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Symptoms

Charles Bonnet Syndrome/Visual hallucinations

Other problems with vision & AMD

  • problems with visual acuity, photostress, blindspots, color vision, sensitivity to light, depth perception
  • eye problems that have similar symptoms as AMD:

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Risk factors

Age

  • Age is a large factor but can start earlier
  • Much less common are several hereditary forms of macular degeneration, which usually affect children or teenagers. Collectively, they are called Juvenile Macular Degeneration. They include Best’s Disease, Stargardt’s Disease, Sorsby’s Disease and some others.  See Stargard’s Disease section above.

Diet/nutrition (working on this section)

  • diet low in various nutrients & high in others have been linked to AMD.
  • See Nutrition and Vitamins/Supplements under Self-care/self-maintenance below.

Race

Gender

  • AMD more common in women perhaps because women live longer than men

Uncontrolled high blood pressure

Uncontrolled high cholesterol

Smoking

Blue Light

Eye Color

Aspirin & other medications

Other possible causes

  • Biological Process in Wet AMD – some evidence that the photoreceptors are starved by the lack of food (oxygen & nutrients in the blood) and the growth of blood vessels is to compensate for that.

Connection between AMD and Alzheimer’s Disease

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Treatments

  • FDA approved options in the US, injections, implantable telescopes, laser treatment (also outside the US)
Injections for Wet AMD
Telescopic implants
Are there new treatments in the pipeline?
Vitamins (see Self Maintenance/Self Care section below)

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Research/Clinical trials

 

How can I become a part of a clinical trial?

  • A list of sources of information about clinical trials and how to find out for you to participate in.
  • You can search for clinical trials from the links above
  • There are registries where you sign up and enter information about the status of your eyes.  Researchers will use this information to find people that match their research and contact you.  Click here for more information about these registries in the US and elsewhere

Gene Therapy

Bionic Eye/Retinal Implants

  • What is a bionic eye?  It’s also called retinal implant or retinal prosthesis.   Implant is put in retina, camera worn by person sends image to implant which stimulates optic nerve
  • Click here for overview of retinal implants including videos of how it works & interviews with people who have them.
  • March 21, 2016 UK Bionic eye being tested
  • Here’s an article about one being developed at Carnegie Mellon institute in Pittsburgh, PA.

Nutritional Supplements

  • See Vitamins/Supplements section below.

Stem Cells

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Coping with low vision

Low Vision Aids

Wearable Technology

  • coming soon!

Suppliers of low vision aids

Financial Help

Sunglasses

Lamps

Transportation

  • A website for the US where you enter your zip code and transportation options for your area will be shown.

Bioptic Driving

Depression

Checking vision

Amsler Grid

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Self maintenance/self care

Low vision rehabilitation

Vitamins/Supplements

Nutrition

Exercise/Activity

 

More to come, you can check out these posts now

Video: Overview of Assistive Technology for People with Low Vision

Highlight: How do I use Zoom for Apple products?

Highlight: What about Apple’s accessibility features?

News: Top 10 Low Vision Aids for AMD

 

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Home

Blog Posts

cropped-brown-eye-6793182

We will be regularly adding new information to the Highlights/News section as well as Sue’s Journal pages.  To make sure you are notified when that happens, please go to ‘subscribe by email’.  On laptops & most tablets, you will find out how to do that in the right-hand column.  On a smart phone, it will be after the content.

 

 

Home

In The Beginning

February 2015

I am a 61-year-young woman. Life is good. I am at the top of my career. I am active. People tell me they want to be me when they grow up.

February 2016

I am going blind. I’m terrified.

June 2015

I am driving down Route 11 with the windows open. Something gets in my right eye. No biggie. Wipe it out. With my right eye closed, the car in front of me disappears. Oh shit. Open the right eye again and the car in front of me is back. Close the right eye again and it disappears. There seems to be a problem here.

A call into my friendly neighborhood ophthalmologist gets me an appointment for the same day. They think it’s something serious. After several different tests, I am given a diagnosis of dry Age-Related Macular Degeneration (AMD or ARMD).

When I was in third grade, I had a button that said: “we never guess, we look it up.” In the age of the Internet and Google, this has become one of my credos. I look it up.

We never guess, we look it up.

What I find out is that Macular Degeneration (MD) is an eye condition in which the fine focus part of the eye stops working. There is actually a more complicated mechanism behind it but we will leave it at that for now. I will visit the science stuff later.

Macular Degeneration is thought to be genetic. Looking back, I realize my father had it. It also happens more to white people than other races. It happens more in women than in men. And, thus the name. happens in those of us who are over 55. Those are the static variables. (Static variable, sounds like an oxymoron to me.)

I’m in the static variables, I am guilty, guilty, guilty, guilty. Among the lifestyle choices that are factors in AMD, not so much. I have never smoked and I am in fairly good shape. The jury is out on whether or not my history of high blood pressure has anything to do with my developing the condition.

So here I am, based on the static variables, a really good candidate.

What exactly, however, was happening in those big brown eyes?

Written in February 2016; updated September 2018

To fast forward to what Sue’s life is in September 2018, read In the Beginning – Revisited

Click here to go to a short video that explains the basics about macular degeneration

Next: The Science Stuff

Home

Sue’s Journal Pages

June 2023 There’s an announcement that since Sue has not written any new journal pages for some time, the site has been archived until we can decide if the work necessary to make sure all information is accurate and up-to-date can be made. In the meantime, you’ll get some pages ‘not found’ or ‘private’ until that decision has been made. The emphasis for several years has been on the Facebook group.

Update 2024 She HAS been writing about her experience with the APL-2/pegcetacoplan/Syfovre Phase 3 clinical trial, GALE follow-up study, and GARLAND Phase 4 clinical trial.

 

2024 Most Recent Pages

Sue’s Series on Being a Participant in the APL-2/pegcetacoplan/Syfovre Phase 3 Clinical Trial, GALE Follow-up Study, and GARLAND Phase 4 Clinical Trial

2016

Sue’s first aspiration to be a ‘super lab rat’ was not long after she considers the start of her status as legally blind. You can read about that here: In the Beginning.

2019

It was June 2019 she was accepted into the Phase 3 clinical trial for what was first called APL-2, then pegcetacoplan (Syfovre when it was approved by the FDA in 2023).  Finally a Lab Rat. In July of that year, she wrote about her first injection: The Beginning of My Clinical Trial.

2022

In August 2022, before the FDA approved Syfovre (February 2023) and after that she was accepted into the long-term follow-up study, she wrote about her ‘Diabolical Plan’ to be accepted into a stem cell clinical trial while she’s still alive: My Diabolical Plan: Stem Cell Transplant for Dry AMD.

2023

She also wrote about the discussions of the studies: Pegcetacoplan Study Cliffhanger and Pegcatacoplan Side Effect Hunting.

After the drug was approved in February 2023, she revised her article from her perspective of being halfway through the 3-year follow-up study: My Diabolical Plan Revisited March 2023. In this article, you can read about her trip to Wills Eye Hospital in Philadelphia to participate in an interview for a CBS affiliate which ended up being shared internationally about this experience. You can find the link to that broadcast here.

She also wrote What Does Syfovre Mean for You?

She also helped me with the page Questions and Answers – FDA Approved Treatment for Advanced Dry AMD/Geographic Atrophy/GA.

First FDA-approved Treatment for Advanced Dry AMD/Geographic Atrophy/GA: Perspective from Sue.

2024

 

 

 

You can choose:

  1. To START AT THE BEGINNING and follow the pages from one to another like chapters in a book
  2. To get a list of ALL pages (some of the more recent ones may not be here yet)
  3. If you want to access pages by a particular CATEGORY, look to the right of this page or at the bottom and choose a category (for example, Cognitive Therapy, Research, etc)

 

 

Sue’s Toolkit – 2 Years Later – Part 1

Sue’s Toolkit – 2 Years Later – Part 2

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