Category: Diagnosis

Hodge Podge

This may end up as another chatty, hodge podge affair. There is really nothing major happening and in the world of progressive eye disease nothing major happening is a good thing!

So, actually, I guess that is my first offering here. Those of you who have recently received your diagnosis or have had a crisis and are really distressed – it is not all drama and disease focus for the rest of your life.

You adjust and other things take center stage. That is not only normal but it is a good thing.

Second offering is something I picked up last month at the support group. When I said dry AMD is the base disease, they looked at me as if I had three heads. What I meant – and what they had not gleaned. Why won’t people do their research! Or minimally ask questions? – is that even though the shots have stopped the neovascularization, the growth of new blood vessel that lead to a bleed, you still have the underlying cause of the problem. The cause is regular, old, dry AMD.

This is why, even though you think the stuff we publish on dry AMD does not relate to you, it does.

Wet AMD is one type of end stage AMD and geographic atrophy is the other. Stopping the bleeding does not eliminate the underlying disease. It just eliminates the symptom.

Which brought me to another thought. I have never seen anything that says if an eye prevented from going wet will go to geographic atrophy. Hmmmmm…..

Nuts! More to worry about. Kaszubski et al in Geographic Atrophy and Choroidal Neovascularization in the Same Eye: A Review stated there are people who can have both forms at the same time. Geographic Atrophy generally happens first. (That part is bad news for me although I am under the impression that for me there is very little left to ‘save’ by building new blood vessels.)

To follow the question posed above, though, they also say there is some evidence anti-VEGF shots can increase the chances of GA development.

While that is bad news for you getting the shots it does NOT mean to stop your shots. No shot and you will bleed. Bleeds lead to scarring and certain vision loss now. GA is slow and lead to vision loss later. Given a choice, battle the bleeds and worry about the atrophy later.

End of lecture.

Other than that, in real time Memorial Day approaches and I am thinking summer. Although I know there is ‘no rushing city hall’ (to paraphrase another old chestnut), I started looking up Astellas and Robert Lanza again. Just to see what the dear boy is up to. I have been hoping to get to Philly and the clinical trials this summer. It would be perfect timing for me but I am not sure about the Astellas Institute of Regenerative Medicine (AIRM). They will need to give Wills the go ahead to start one of ‘my’ clinical trials before anything happens for me.

Astellas is gearing up for something, though. Something big. A couple of years back they bought OCATA for $379 million. Now they are on a hiring binge and are looking for a bigger location in or near Marlborough, Mass.

In the business articles I read Lanza purposely hyped the work they are doing on AMD. I am assuming that is still their big thrust. (That is even though AIRM is in a variety of areas of regenerative medicine and Lanza himself is intellectually all over the place, including developing a theory of the Universe!)

Anyway, seeing this big a build-up with lots of business chatter tells me something is going to happen. Just hope it is in the trial I have volunteered for. My eyes and I are not getting any younger! Continue reading “Hodge Podge”

Hindsight is 20/20

Good evening! How are you all?

Lin has noticed I seem to have written soooo many pages they are overwhelming and confusing some people. She feels this is particularly true for some of the newbies who probably feel like they have walked in on the (boring and confusing) middle of a movie. [Lin/Linda: to be clear, those are Sue’s words! ::grin::]

Understood. Some of you are back in the shock and doom phrase and I am talking about getting newspapers on your phones and other trivial matters. Who wants to hear about that sort of thing while your world is unraveling?

In the interest of pointing you towards something that might actually be helpful, Lin is republishing some earlier pages for your attention and discussion. And I – always helpful – am going to add to the confusion by writing another page!?

This page will have a catchy title thanks to Lin, but right now I am going to call it “What I know now that I wish I had known a year and a half ago”.

First, you are not going everything black and dark blind.

It is not good but neither is it quite that bad. You are losing central vision. Things will not be good for anywhere from about 15 to 60 degrees of arc. Since normal visual fields are 170 or so degrees of arc, you have the potential to lose about a third of your vision. Not anything to cheer about but better than 100%.

You may not be doomed to progress to end stage AMD.

About 15% of patients become ‘wet’. About 15% progress to geographic atrophy. That means you – starting out with drusen and a diagnosis of early AMD – have a 85% chance of dodging the proverbial bullet for end stage AMD. You may very well not get as bad as I am and a year and a half after my second eye went to hell, I am still functional. [Lin/Linda: a person can have both wet AMD and geographic atrophy in the same eye.  I don’t what that does to the %, if anything.]

You did not cause this.

Yes, AMD is caused but it was not caused by anything you did or did not do. The causes are in your genes. This is a heritable disease. There are dozens if not hundreds of genes that are being investigated to try to figure out how AMD is created. It appears AMD may just be the result of a genetic ‘perfect storm’ and there is no one to blame.

There may come a time you are seeing things.

I saw some odd stuff when my brain was working overtime to assign meaning to the faulty images my eyes were sending it. You are not psychotic (I hope you are not psychotic). This is Charles Bonnet Syndrome. When your brain gives up trying to assign meaning to false signals you will stop seeing weird ‘stuff’. In the meantime, enjoy the fantasy.

Point number last: There is an amazing amount of hope for treatment and eventually a cure for AMD.

Research is going on everyday. New discoveries are announced with regularity. The medical community is hot on the trail of something that will arrest the progression and may even reverse this disease. All we have to do is hold on.

OK. Those were my biggie when I first lost my second eye. What are you worried about? Please share and we can discuss it. Continue reading “Hindsight is 20/20”

Always Learning More

Hey, there! I think I have found a good article on macular degeneration, our favorite but somewhat distasteful topic. The article is in Webvision and is entitled Age-Related Macular Degeneration. Another catchy title. The main author is Hageman.

Did you know the name up until around 1990 was ‘senile macular degeneration’? Makes it sound like our eyes have lost some of their mental faculties. Glad that was changed!

Also discovered the fovea is the center of the macula. It contains the highest concentration of cone photoreceptors and is the only region of the retina that can attain 20/20 vision.

I think when my optometrist said I had such an abrupt vision loss because the deterioration had reached the center of my macula she was talking about the loss of my fovea. That means 20/20 vision is no longer possible for me. Even if I use prisms or eventually get that eye max mono thingee, things will not be ‘perfect’. [Lin/Linda: she means the EyeMax Mono lens implant.]

This article says macular vision is 10% of vision! Estimates of degrees of arc of potential loss seem to be getting better, but don’t get too excited. Remember we are talking my interpretation of things I read. It is guess-work. I know nothing.

Although I used to think hard drusen sound more ominous than soft ones, it is actually the other way around. Hard drusen are smaller and soft ones are larger. If they are looking in your eyes and mention soft drusen, you have more of a problem than if they see hard drusen.

I thought that all dry AMD would progress to GA (geographic atrophy) if the person lived that long. This article says only 10 to 15% of dry AMD patients progress rapidly enough to ‘achieve’ GA. Interesting.

That means my visual state is something many of you will not have to experience. That is a good thing! And FYI? I am functional so you can remain functional as well.

For you ‘wet’ folks, the article once again cautions you to stay on top of things and get your shots. Left to its own devices wet AMD progresses to a cicatrical stage. Cicatrix is a fancy word related to scars and scarring. Disciform scars occur when fibrous tissues develop in Bruch’s membrane between the RPEs and the retina. Scarring is, needless to say, not good and can result in severe vision loss. Bottom line for this paragraph is: do not allow bleeds to happen to you!

Closing in on my 500 words and I still have pages to read in this article. I think I will close this page, read some more and start another.

And FYI, I emailed by doctor. And – while he also believes the increased density/opacity of my blind spot is related to expected disease progression – I am going in for a vision screen in two days. Perceivable changes in your vision? I expect you to call, too. Check it out.

written April 25th, 2017

Continue reading “Always Learning More”

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.

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”

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: When should I get my eyes checked?

Did you recently get a diagnosis of AMD?  Was it such a shock that you don’t remember much about what the doctor told you about when to get your eyes checked?  Or did you not discuss it at all? The latter situation is all too common.  Of course, a lot of that depends on the type of AMD (dry or wet) and the severity.  It is VERY IMPORTANT that you treat any vision loss as an emergency.  Call your eye doctor as soon as possible.

Here’s a great video showing how an eye doctor should examine your eyes and how he/she would be able to detect AMD.

In the video, the narrator states that everyone who is 60 and older should have a comprehensive dilated eye exam once a year. Of course, if you are having problems you should NOT wait a year, call for an appointment as soon as possible.  However, if you are at higher risk due to race, age or family history of AMD, that may mean you will see your eye doctor more often.

Between eye exams, you should be monitoring your own vision using an Amsler grid on paper or on a computer, tablet or smartphone.  Here is a great article explaining the importance of home monitoring and showing an Amsler grid, where to get one, and how to use it. It also describes the ForeseeHome Monitoring Device which is connected to the doctor’s office.  Click here for that article.

 

 

 

Doctor, Doctor, It Hurts When I Do This

Hi, it’s Linda (Sue calls me Lin).  I’m hijacking Sue’s journal. I need to vent. Did the title grab you?  It’s the first line to a joke that ends with the doctor saying “Then don’t do that!”

First, I do not have AMD.  My dad had it so my risk is higher than ‘normal’ so I’m concerned about developing it in the future.  I’m here because of and for Sue. And now for you.

I went for my annual eye exam with the doctor who has been doing mine for 25 years.  He’s a great guy, a great doctor.  He helped me through a tough time last year when I had cataract surgery & developed PVDs (Posterior Vitreous Detachment) in both eyes which is common.  I also have some crazy thing on my corneas called map dot fingerprint dystrophy.

I’d gone to my appointment armed with a printed page from our website to give to him with the hope he’d eventually take a look at it, maybe even post it on their website.  Granted, he was busy but in the past, even when he was busy, he took the time to talk to me.   After the exam was over, after he told me that my macula was healthy, he asked how I was doing.  I started “My friend of 40 years who is my age has AMD and a few months ago her vision became so bad that she had to quit working and driving.”  He stopped me with “I don’t want to hear about that [AMD]..it scares me!  My mother went blind from glaucoma from the shots!” I didn’t know what else to say but “I’m sorry about your mother’s vision.”

OK, I was not there to be checked or treated for AMD.  He had other patients after me.  I decided not to leave the website paper with him.  Maybe if I didn’t know now what I do about the disease his reaction wouldn’t have bothered me but it did.  I’d looked at his rack of brochures & the only one on macular degeneration was from the company that makes the AREDS/AREDS2 supplements that many doctors recommend (I have LOTS more about supplements in another post; I’m working on expanding it, actually).  What’s up with that? Are there no other handouts? Since the supplement company is making money from what the doctor recommends, I’m sure they sent him the brochures for free.

As I drove home, I kept thinking about why his reaction bothered me so much. I figured it out. When I started to do research for Sue and for this website, I kept hearing about the visits people had with their eye doctors when they first got an AMD diagnosis.  Here are just a few statements with a brief comment from me in brackets:

  • “He told me that it would progress slowly, maybe take 10 years to get worse so don’t worry about it.” [every person’s case is different & there is no definite time frame.]
  • “There are vitamins that you can get that are expensive but buy the cheaper ones.” [The subject of vitamins is more complicated than just going by price.]
  • “Take these ‘eye vitamins’ and also take a senior formula multivitamin.” [TOO much of some vitamins/nutrients CAN be harmful!]
  • “She didn’t tell me much, she just said that it’s an age thing.” [Even though AMD is more common as we age, many people get it when they are much younger; some people never get it.]

My eye doctor actually said to me today “you don’t have macular degeneration…yet.” Is he saying that I will eventually get it?  I know better, thank goodness.

Basically, patients are getting little to no information and downright inaccurate information from their eye doctors.   By navigating our website, you will find that we explain why each of statements are just not correct!

Which brings up the ‘head in the sand’ issue.  My eye doctor voiced his fear of the disease & I believe that he was doing that to me as Linda, not to me as his patient.  I hope that for his patients who DO have AMD, he is supportive & will refer them to someone who can educate them if he chooses not to do so.   But to know that HE is afraid of AMD wasn’t very comforting.

At least in the US, people are coming out of their eye doctor’s office thinking:

  • “I have nothing to worry about because my doctor said not to worry”
  • “This is too scary, I’m not going to think about it”
  • “I am so confused, where do I go to get more information?”

I’m guessing that many of you had that last one and that’s why you are here!

So tell us what YOU were told when you first got your diagnosis? Just leave a comment below. Continue reading “Doctor, Doctor, It Hurts When I Do This”

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

Highlight: What do I do if I get a diagnosis of AMD?

Getting a diagnosis of AMD can be a shock.  We’ve found that many eye professionals don’t really do a good job of answering a patient’s questions. Also, you may not be able to ask questions right away.  Many people in this situation turn to the Internet to do their own research like we did.

The Prevent Blindness organization has a system where you get a customized guide with resources, tips and steps that you can take to you be proactive about protecting your vision.  All you have to do is to answer questions that you are given.  You can print the guide and you can view it on a computer, table, smartphone.  You can also go back and update your answers to get an updated guide.

Click here to go to Guide Me.

Highlight: Consistent checkups are important to eye health

March 25, 2016

This is a great article that points out that it is important to have your eyes checked regularly and that the timing depends on what’s going on with your eyes.  The article makes 2 especially important points about a diagnosis of AMD:

  •  Even though there is no cure yet for AMD,  it’s important to catch it early since there are some ways to slow down the disease.
  • If a person is diagnosed with AMD, it’s a good idea for them to alert their children about it since there is a hereditary component to it.

Click here to read the rest of the article

Taxman

[For those of you who don’t know, the title is an homage to the Beatles 1966 song Taxman.]

Sue wrote this in 2016. She updated and added to the information in 2017 in her page It’s That Time – Tax Time Again!

Let me preface this with another disclaimer: I am not an accountant. I know next to nothing – that is zero, not a thing, nada – about taxes. I am writing this as a heads-up for people because, frankly, I had not given this a lot of thought and I bet some of you have not given it a lot of thought either.

Disclaimer: I am not an accountant and I know nothing about taxes. This is just a heads-up.

So, heads up! As my friend the accountant reminds me, it is tax season! That friend as well as the accountant who does our taxes both mentioned to me a little vein of silver in this gray cloud of visual impairment.

There are tax breaks for the visually impaired.

[The documents referenced below are for the tax year 2017).]

Click here for more information on the tax breaks for disabled taxpayers. This is an IRS document called Tax Highlights for Persons with Disabilities. [Lin/Linda: this document is for 2017 tax returns. The one for 2018 is not out yet.]

Before I get into what I have learned with limited research on the web, I would encourage you to get help from a professional or at least someone who hopes someday to be a professional. I googled ‘free tax preparation for the visually impaired’ and I found the IRS webpage Free Tax Return Preparation. With any luck, you should be able to find free tax help in your area. Within five miles I can get free help from accounting students at the local college. Within 25 miles there are seven places I can get free help with my taxes.

I would encourage you to get help from a professional, or at least someone who hopes someday to be a professional. The IRS has a webpage where you should be able to find free tax preparation in your area.

Reminder: I know nothing. Check it out for yourself on the websites I am expecting Lin will link to this post. Go to a professional. What I THINK I discovered in my browsing this morning is that taxpayers who are ‘blind’ are able to claim a higher standard deduction. This can be without itemizing.

Click here for the IRS list of their accessible forms & publications such as forms & how-to videos.

Those of us who are working can itemize and claim expenses that are directly linked to materials and services that are needed to keep us working in light of our visual impairment. I am talking about ‘toys’ (see previous post) as well as things like a driver or transportation service.

Click here for the IRS 2015 Publication for Medical and Dental Expenses for 2017.  A quick search shows that you can deduct medical expenses for things such as guide dogs/ other service animals (buying, training & maintaining) and Braille books & magazines. Also, check out the section Impairment-Related Work Expenses.  You may be able to deduct the cost of the ‘toys’ you use for work.

Those of us who are not visually impaired but have a visually impaired spouse or other dependents may also qualify for a tax break. For example, if your spouse is paying for someone to come in the afternoon and make your lunch because you are not able to do it yourself, that could be a deduction.  You’ll find it in the documents we’ve referred you to under Child or Dependent Care Credit.

If you have a visually impaired child or spouse, you may qualify for a tax break called Child or Dependent Care Credit.

The budgeting.thenest.com website mentions, of course, basic medical expenses as being deductible. The site also mentions things like the difference in cost between standard print magazines and those same magazines in Braille. It does not say anything about large print magazines and books but I suspect a case could be made for those.

In short, heads up! Check it out. Get free help if you are unable to navigate it all yourself. There are some tax bennies for being visually impaired.

Written March 2016. Updated September 2018.

Continue reading “Taxman”

Toy Story, Too

This is Toy Story, too. Sequels are not just for the movies.

Just like all roads led to Regillo, pretty much all ‘toy’ recommendations being given to me are for Eschenbach products. I am not telling you they are the best. I have absolutely no basis for comparison because I have tried very few other low vision products. I am just telling you these are the ones I have tried and so far, I like them. I like them. (This is not a paid endorsement but if anyone out there is with Eschenbach, we could talk business!)

My reader is a Smartlux Digital Video Magnifier. It is easy to use. The reader has 5x, 7x, 9x and 12x magnifications. You can hold it in your hand or prop it up on its little ‘kickstand’.

Sue's Eschenbach Smartlux Digital Magnifyer
Sue’s Eschenbach Smartlux Digital Magnifyer

There is no handle on the Smartlux like there was on the first reader I tried. That reader was all right, but as many products I have had to endure over the years, it was prejudiced against the left-handed. I could hold it in my right hand and there was no problem but the instant I switched it to my left hand, it would collapse on me.

Now, this is fine because, like I said, I have endured the effects of prejudice against us ‘sinister’ people and I am stronger for it. Just remember, when the lefties of the world take charge – as we rightfully should – the reader, the scissors, etc. will be made for the other hand. You have been warned! 🙂

OK. Moving right along….my reader has stop action. In other words, it takes a picture of what it is seeing. This is good in the grocery and a variety of other places. For example, you can stick the reader in the frozen foods case and not have to stick your face in there. Take a picture and you know what you are reaching for. Helpful considering I bought three pot pies I did not like the other week. Oooops.

The reader also has different colors and contrasts. I am uneducated about other eye disorders but I would assume seeing a yellow or a red background, for example, is helpful for some people.

Oh, by the way, most CCTVs have the contrast feature, too. I tend to mention what is relevant to me and gloss over some of the other stuff. Mea culpa, again.

The other thing I want to cover in this post is the pair of telescopic glasses I am trying. These are also called MaxTV but they are not clip-ons (clip-ons are available). I think the clip was bad on the MaxTV clip ons I was trying because they kept falling down every time I moved.

Sue's Telescopic Glasses, view 1
Sue’s Telescopic Glasses

One of the cool things about these seriously funny glasses is that they are adjustable. There are little wheels on the sides that move the lenses closer or farther away from one another.

I have been practicing with these telescopic glasses. I was using them to try to find my husband and the cart in Giant Food. When I found him, though, I had a little accident. I dropped six cans of tuna fish on the floor. Six different cans going in six different directions. It is important to remember that things appear closer than they really are when you are using telescopes. I really thought I was dropping the cans in the cart. One of the indignities of visual impairment.

It is important to remember that things appear closer than they really are when you are using telescopes.

Remember, as my father used to say, “do as I say, don’t do as I do.” The telescopic lenses are not for moving around. You are supposed to be stationary. Bee-bopping around the market is not the proper use for them…even if you have been running up and down the aisles with your hands full of tuna fish for the past 15 minutes and think you will never find him.

If anyone tells my optometrist/low vision specialist I have been doing this, I will deny it! I repeat, “do as I say, not as I do.”

That is it for my toys for now. Recognize that all of these products are rather expensive. I would refer you back to the post about the App Store for free and inexpensive alternatives to these. While the magnifier apps on my iPad mini are not as good a quality as the products I mentioned here, the price is right – often free.

It has come to my attention from the Macular Degeneration Partnership that most devices are not paid for by Medicare.

An approximately $400 iPad mini and free apps may do you well as an alternative if the price of other assistive devices is prohibitive.

Written March 2016. Updated September 2018.

Continue reading “Toy Story, Too”

Toy Story

This is a toy story. Yesterday the nice delivery person in his reindeer-brown truck brought me a present. What I got was a state-of-the-art, high-end closed circuit television system. This is also known as a CCTV.

I have been practicing on loaner CCTVs from Blindness and Visual Services (BVS). The models I have used thus far are older – one is 1987; this is not new technology – and not high-definition.

The model I will be getting for my very own – as soon as BVS and I pay for it and make ownership official – is pretty awesome. It is called the Magnilink Zip. It is marketed by Low Vision International which is somehow connected with Eschenbach. These are apparently both Swedish companies and they are doing great things for us with visual impairment. My handheld reader is also an Eschenbach.

The Magnilink Zip has a 17-inch screen. It has a camera that can be focused on either a document on the reading table or can be flipped around and focus on things out in the room. I was told this is a popular model with students because it allows them to see their professors and what is being written on the board.

I would like to reverse that and watch my students in DBT class.

The camera is high-definition as is the screen and the picture is incredible. Very sharp and clear. Magnification goes from a minimum which I estimate to be about 5x to 26x. Looking at something with 26x magnification is pretty wild. Not sure why anyone would need it, but it is there if you do.

The big reason I went for this particular model is it is portable. I work in several different places and do a lot of work from the house. I could put three or four lesser quality CCTVs in all of my offices or I could have just one that goes around with me. The Magnilink Zip folds up small enough to fit in a carrying case that most people are able to carry slung from a shoulder. The whole thing weighs between 15 and 20 pounds.

I work several different places and do a lot of work from the house.  I can carry the Magnilink Zip with me.

All in all, not a bad piece of machinery at first sight. I am looking forward to actually ‘road testing’ my Magnilink Zip in the office really soon.

I do need to tell you the big drawback with the Magnilink Zip. That is, the machine is approximately $4000 for the top of the line model that I have. This one has all of the bells and whistles because I will be using it for work. They also make less expensive models with smaller screens and less portability. There may be a model that is more in your price range that will still fit your needs.

Click here for Low Vision International and Eschenbach.

That’s it for now. I might feature more of my toys in another post. There are lots of options out there and I hope you will be able to find the right toys for you.

Written March 2016.  Updated September 2018.

Continue reading “Toy Story”

Soothe Thyself

Change is stressful. Even good change is stressful. This is my second week back to work. Right now it is only part-time but that is enough. Less than two months ago I was working 50 hour weeks and thriving on it. Now I come home after a 7 hour day, three days a week and I am wiped out. What the hey?!?

Change is stressful.  Even good change is stressful.

This is obviously something I want. I would not be trying to go back to work unless I really wanted it. It is not something I have to do; it is something I want to do. It is getting easier the more I do it. I am relaxing a little bit just in knowing I am capable – with the help of a lot of good people and my ‘toys’ – of doing the job. My stamina is building. But until I get my groove back and my stamina built, what do I do with all of this STRESS?

Dialectic Behavioral Therapy (DBT) has Self-Soothing Skills that are taught as part of the distress tolerance module. You remember self-soothing? When you were one it was the thumb in the mouth and the favorite blankie. Maybe it was sitting in your crib and rocking. Right now those ways of self-soothing might not appear very appealing, but they worked when you were one. What can we old, mature folks do that will work as well without the stigma…or the buck teeth?

DBT looks at self-soothing through all five of the senses. We need to find ways of being gentle and kind to ourselves, comforting and nurturing, and we can do that through the five senses.

Self-soothing is not in the head. It is in the body because that is where the stress is stored.

The first of the senses we will discuss is vision. Well, yippee. Not seeing too well here. How can I be calmed visually?

My AMD is not all that advanced – Thank God. I have peripheral vision. I am also capable of looking at something big, like the sky with clouds, and have that sight fill most of my visual field. Most of the sky with clouds is being seen by the rest of my retina, not the macula. (There are times I will look at something big like the sky just to remember what it is like to see something without a chunk in the middle taken out). Watching the clouds blow across a bright, blue sky is a self-soothing experience for me.

Is there something that you can see that is self-soothing for you? If not, don’t worry. There are four other senses you can fall back on.

How about hearing? Some people like easy-listening or slow, classical music. I am a child of nature so my favorites are from the outdoors. Right now it is getting dusk and the birds are getting ready to roost. Can you hear the robins chirping? Day is done and it is time to rest.

When the sun goes down and the birds are quiet, I can just hear the frogs calling in a wetland nearby. If you don’t live somewhere you can listen to nature, there are recordings of natural sounds that you can download on your computer.

What sounds are calming for you? Listen to them and sooth yourself.

Smell is a great sense. It is very attached to emotions and memory. Even if I could not consciously remember my childhood, for example, I would know it was happy. How, you may ask? Crazy as it sounds, two of my favorite smells are hot tar and creosote. I was raised in a new, 50s era neighborhood with new telephone and light poles (creosote treated) and tar and chip roads. In the heat of the summer, the air was redolent with hydrocarbons. Other people may think they stink, but I love them. They are the smells of my childhood summers.

Which all goes to say, a smell that soothes one person may send another gagging to the bathroom. That’s alright. Smells and their effects are very personal because they are connected to memory and emotion. The olfactory center of your brain sits very close to the emotional brain and the memory center. In this case it really is a matter of location, location, location.

So what smells are able to calm you? While you can get a variety of essential oils that are supposed to be soothing, you don’t have to go the commercial route. Creosote and hot tar may work just as well.

A smell that soothes one person may send another gagging to the bathroom.

So that is three senses. The last ones are, of course, touch and taste.

A friend bought me a gift certificate for a massage when everything went south with my eyes a couple of months back. Massages are wonderful, but they are expensive. If you are on a limited budget you might want to put lotion on your feet or take a nice, bubble bath. Last evening when I was stressed and a little pissy, I went upstairs and took a hot bath with vanilla shower gel. Did the trick. Other ideas would include putting fresh sheets on the bed or putting on a plush, wooly sweater. Curl up and be engulfed in your favorite chair. Pet the dog. Run your fingers along the satin on the blanket.

There are a lot of ways to self-sooth with touch. Find one that works for you.

The last of the senses is taste. A lot of us can get in trouble with taste. I want to self-sooth so I eat the entire Boston cream pie. Wonderful on the lips but not so much on the hips, huh? Moderation and savor are the two key words here. Get one expensive chocolate and see how long it can melt in your mouth. See how many different flavors you can taste. Roll it around in your mouth and make it a multisensory experience. Not only taste that chocolate but feel it and smell it as well. Self-soothing with taste is not about the quantity of food but about the quality of the experience.

Moderation and savor are the two key words here.

So I am listening to the birds calling before night falls. Outside, I am looking at the sky and watching the clouds. I can feel a light, cool breeze on my face. I am not tasting anything, but the smell? Well, I guess it is Spring. It was a stressful day, but I am winding down with my self-soothing skills. It is going to be a restful night.

Written March 2016. Reviewed September 2018.

Continue reading “Soothe Thyself”

Pecked to Death by Ducks

As I posted a few pages ago, I am back to work a few days a week. I had naively hoped that everything would be good and everyone would be in my corner. Note the word ‘naively’.

I am not the me who was doing this job several weeks ago. Remember the woman who was able to see what she was doing? I have made some dumb mistakes I never would have made if I were still totally sighted. It’s damnably frustrating, not to mention embarrassing. While I have a steep learning curve and have vowed not to make those particular mistakes again, I anticipate I will be making other mistakes and facing other challenges.

I have made some dumb mistakes that are frustrating and embarrassing.

Locally, people are great. My coworkers are supportive.  My bosses are good. Just a little scared they may have taken back someone who will not be able to do her job. News flash: there are times I am afraid of exactly the same thing. My Blindness and Visual Services (BVS) and low vision people rock. I have all sorts of cool toys to help me. For a government agency, BVS is moving at the speed of light to get me set up with what I need. No complaints locally.

Local people and services are great!

I have contacted two large publishing houses about my need for some things in digital format. You can enlarge things when they are on your tablet, don’t you know. What I thought was going to be a simple “Hey, help me out here” seems like it is turning into a corporate run-around. They keep suggesting I purchase digital versions of materials that are, in some cases, not even on the market yet. And what, pray tell, am I supposed to do about serving my clients in the meantime? Good customer here! Cut me a break.

I’m a good customer of 2 large publishing houses and yet they want me to purchase digital materials that they should be happy to supply me with for free.

But screaming about – and at – people who don’t get a good deed is not only good for the soul but also good for business and that is probably the topic for another post. Right now I want to go back to DBT and talk about how I can get through the frustration without blowing a fuse.

DBT has some skills for improving the moment. These skills are good for getting through the rough patches when you are down or frustrated and there is not a great deal you can do about fixing things at that time. Conveniently, they are called – acronym alert here – IMPROVE skills.

DBT has skills that will help me deal with frustration without blowing a fuse.

I is for imagery. Imagine yourself someplace calm and peaceful. Take your mind on vacation somewhere you felt wonderful. Go back to that safe place where nothing ever hurt you. These places do not have to be real anywhere but in your head. My favorite place got washed away in a flood in 2004. Just the same it still exists in my head. I can go back to the ol’ swimmin’ hole any time I want as long as it is in my mind.

Imagine yourself someplace calm and peaceful even if it is not anywhere real.

M is for meaning. Viktor Frankl was a German Jew. During his time in several of the Nazi death camps, Frankl, a neurologist and a psychiatrist, spent his time ministering to his fellow prisoners. He had a purpose and a meaning to his life. Frankl also discovered the prisoners who did the best and were able to survive the camps were those who had a purpose and saw their lives as having meaning. Frankl said that people who have a ‘why’ can survive any ‘how’.

Perhaps there is meaning to your life, meaning to what is happening to you. A meaning I put to my life, my disease, is believing I will get into the clinical trials and help to find a cure for AMD. What is your purpose? Find your ‘why’ and you will more easily endure the ‘how’.

I have found a purpose to my life with the disease…what is yours?

P is for prayer. Some of you have a strong faith and some do not. It has been said there are no atheists in a fox hole. Therefore I will assume that, no matter what your religious beliefs, many of you pray.

The Serenity Prayer is nice. So is the 21st Psalm if you are of a Judeo-Christian faith or even if you are not. The Prayer of St. Francis is also good (“Lord, make me an instrument of thy peace…”). You can make one up. It is up to you.

Prayers are basically of three forms: “HELP!”, “thanks” and “nice job”. When I am in troubled times, such as now, I use the “HELP!” type of prayer a lot. However, “thanks” and “nice job” prayers are good because they remind you of what all is going right. Thanks and praise allow us to realize we have accumulated many positives. They have just been forgotten in the face of a crisis. Remember Accumulating Positives is an Emotional Regulation Skill.

There are wonderful prayers out there.  You can even make one up.

R is for relaxation. Relaxation can be anything from a massage to a hot bath to meditation or any one of hundreds of other things. What relaxes you? Indulge. Just make sure it is not a habit that will eventually be hurtful to you.

What relaxes you?

O is for one thing at a time. I adopted an expression many years ago, not even sure where I first heard it, but the expression is ‘being pecked to death by ducks’. What it means is you are being assaulted by a dozen little things at one time and you feel as if you are succumbing to the cumulative effect of the onslaught.

Some days we are just being ‘pecked to death by ducks’. We spin from peck to peck and never actually deal with any one of them. DBT says to deal with one of those unfriendly fowl at a time. You cannot fight a war on too many fronts. Decide where to put your resources and win that battle first. Then go on to the next battle.

What do you do when you are being ‘pecked to death by ducks’?

V is for vacation. Vacation, unfortunately, does not always involve flying to some sun-drenched beach in the tropics. In DBT terms a vacation can be as simple as drawing a hot bath and locking the bathroom door. Hang a sign: “I am not available to deal with any crises for the next 20 minutes. Please check back later.” Remember, as much as we wish it would be, DBT vacations are not running away to Bora Bora and making a living beach combing. They are short and assume we will get back to dealing with things within a minimum of 24 hours or so.

Finally, the E is for encouragement. Get out those pom poms and cheer your favorite player – yourself. Be the Little Engine That Could. Celebrate your progress.  Remember it is important to acknowledge how far you have come. Praise yourself for still being in the fight. Be in your own corner.

Be the Little Engine That Could.

Those, quickly, are the IMPROVE skills from DBT. They are used when there is nothing else you are able to do that moment to solve the problem. You use them when either circumstances are not right or you don’t have the energy to deal for another minute or when you are overwhelmed with the chaos. I hope you find them helpful.

Written March 2016. Reviewed September 2018. Continue reading “Pecked to Death by Ducks”

Mind Weeds

I teach mindfulness. Sort of funny when you consider I am a queen of stray thoughts. Stray thought and mind weeds.

Not sure who gets to decide that something is a weed. Consider the dandelion. A weed to many but the dandelion is bright yellow and cheery. It is a harbinger of summer. You know it is summer when your yard is full of dandelions.

Who gets to decide that something is a weed?

Dandelions are often the first flowers we pick. They are a sign of love. I suspect that when many of you gave your first bouquet to someone, it was bright, yellow dandelions offered from a chubby hand.

You can do a lot with dandelions. When they go to seed, you can blow them off and chase the little parachutes as they fly away. If you put your thumb in exactly the right place, you can sing “Momma had a baby and his head popped off!”  Pop! The flower will fly right into your victim’s face.

Dandelions can be eaten. I have never eaten any but I understand they can be quite good with hot bacon dressing.

Possibly most importantly, dandelions are tenacious. They are survivors. There are thousands of people who make a living trying to get rid of dandelions and the other ‘weeds’. That there is an army out there trying in vain to get rid of them is a testimony to how tenacious they actually are.

Dandelions are weeds to some but to others they are harbingers of summer, signs of love, little parachutes to chase and quite good with hot bacon dressing.

So, in short, I like weeds. I like their defiance in the face of those who would make everything ‘nice’ and status quo. I think the world is a better place with a little wild.

Which is a way of leading into – and justifying – this post. This post is a collection of mind weeds and stray thoughts. If you know me, you know the mind goes a lot of different places. Get ready and try to keep up.

This has been a busy week and I have done a fair amount of wondering. I spent Monday at the medical center waiting for it to be time for my appointments. I had to connive to get two on the same day. I really believe they should write a program that actually coordinates your appointments so that you are not spending your life running to the doctor! Why has this not happened?

Why can’t appointments be coordinated so you can see two doctors in one day?

Short of that, they should have a mile’s walk marked off. Maybe an arcade or a game room somewhere in the facility. I had a book and my handheld reader, but still those places are boring if you have to hang around for a few hours.

Why can’t medical facilities have walking paths, arcades and game rooms?

My handheld reader caused a stir in the waiting room of my optometrist/low vision specialist. An older gentleman was enthralled with it and had never seen one before. All of the older folks around us were craning their necks to get a look at the handy dandy little machine I had. I gave the man a copy of a vision aids catalog I had been given. He had no idea any such thing even existed. Why not????

Why don’t a lot of older people with low vision know about low vision aids?

My optometrist/low vision specialist said – first of all – those who are not ‘stable’ are not told about vision aids such as that. My first thought was being pleased I had been called ‘stable’; doesn’t happen that often. Of course she meant visually stable. Oh well. But the why question stands. Why aren’t people actually being made aware of what is out there and available? My little reader certainly has made things better for me.

Why isn’t everyone with low vision made aware of what is out there and available?

She also said I was getting great service from BVS.  Blindness and Visual Services is a branch of the Office of Vocational Rehabilitation (OVR). The goal is to get me back to work. Great. I want to work. I want to work because it will improve the quality of my life. What about the quality of that man’s life?

I also asked her why I had never seen anyone wearing the funny, clip-on glasses I had been given to try. I don’t believe any one else has seen anyone wearing them either. That thought is based on the weird looks I got wearing them in Walmart.

Why have I never seen anyone wearing the funny, clip-on glasses in Walmart?

She said she has recommended/sold them for years but people don’t wear them. Why? Does it have something to do with acceptance of the truth of the disability? Vanity? Inquiring mind here.

Why not make use of something that would actually help?

I saw my general practitioner, too. The last time I was in that office I was working myself into a stroke. It was early on, just after my Macular Degeneration did what I had been assured it would not do. Namely, go south like the first drop on a roller coaster.

Anyway, he was happy to see I had not stroked out and I had stopped having panic attacks. He thought it was great that we have been working on this website and thought he might refer some of his macular degeneration clients to me for counseling. I said I would consider it because I have at least visited the territory if not lived there for very long. Then it dawned upon me. I am not allowed to take Medicare as payment!  Wrong degree. Government regulations. I could probably do some good with the visually impaired population.

Why would Medicare not be willing to pay me?

Another time this week I went to see my ophthalmologist. The appointment was sort of rushed because his wife was in labor (and no, the baby’s head did not pop off!) He was pleased with my not developing wet AMD and – once again – with my being ‘stable’. Ha! Twice in one week.

They dilated my eyes that day. Has anyone had ‘pebble glass’ vision after their eyes were dilated? My optometrist/ low vision person said it comes with the AMD. Weird. I had never had it before my eyes got bad. I felt like I was looking at an impressionist painting. Why?

Why was I seeing ‘pebble glass’ after my eyes were dilated?

So that is pretty much it for rambling  – least for now. I am tilting at windmills on a few other fronts. Not sure I will win but I intend to be heard. I have been having successes and failures, but those are for another post. I just hope the mind weeds I have scattered – like dandelion seeds – have taken root somewhere.

“You see things and you say ‘Why?’, but I  dream things that never were and I say ‘Why not?’  ” – George Bernard Shaw

Written March 2016. Reviewed September 2018.

 

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How to Win Friends & Influence People the DBT Way

In a recent post, I talked about using skills to get what we want and need without damaging our relationships with others. In DBT speak they are called Interpersonal Effectiveness Skills.

If you are anything like me, you were used to being independent. If no one did it for me, I did it for myself. Now I find myself in the position of asking for favors, asking for help. It is aggravating and depressing; yes? Yes! DBT has skills for getting what you want without alienating people and, just as importantly, saving your self-respect. None of us like to grovel or beg. Too old for that nonsense.

It’s time to learn skills to get us what we want without alienating people.

The acronym is DEARMAN. DBT has a lot of acronyms.

D is for describe. You describe the situation in nonjudgmental terms. Be objective. Good: “I have a visual impairment and I cannot read the menu board.” Not good: “How do you expect anyone to read that board? The print is too tiny!”

Describe the situation in nonjudgmental terms.

E is express feelings or opinions about the situation. Remember not to be judgmental. Good: “I really hate to inconvenience you…” Not good: “This place has no consideration for older people!”

Express feelings or opinions about the situation in nonjudgmental terms.

A is for assert wishes in a clear, concise and assertive manner. Good: “Could you please read today’s specials to me?” Not good: “Read me that damn special right now!”  Remember assertiveness and aggression are not the same things.

Assert wishes in a clear, concise and assertive manner.

R is for reinforce your request, and more importantly, their compliance. Good: “Thank you so much. I really appreciate the help.” Not good: “Well, amazing! You can read.”

Reinforce your request and their compliance.

M is for mindfulness. Stay focused. Don’t get sidetracked. Good: “I would be happy to let you seat me after I know the special.” Not good: “Seat me next to the window. Get me a coffee….WHAT is the special???? I don’t like THAT!”

Stay focused, don’t get sidetracked.

A is for appearing confident. Believe you will get what you are asking for. Convey that you deserve respect. Good: use a strong voice. Not good: Mutter, stammer.

Appear confident.

N is for negotiate. In order to get, you have to be ready to give. Good: “Do you have a comment box at this restaurant? I always like to let management know when I get good service.” Not good: “Do it. It is your job to wait on me!”

Negotiate and remember that in order to get you have to be ready to give.

DBT also promotes persistence. That is calm, goal-directed persistence. It is called the broken record technique. “I would like you to read the special to me…please read the special to me…could you read the special to me….what is the special?”

Be persistent but calm.

I found a quote a while back: “Rudeness is the weak man’s imitation of strength.” -Eric Hoffer. Remember that. Remember it not only when you are frustrated and want to be rude but when someone is rude to you. There are days that this vision loss gets to you big time. There are days you run into seemingly every idiot in the world. Mark Twain said: “Never argue with a fool. Onlookers may not be able to tell the difference.” Don’t engage with people who are rude or simply trying to get your goat (and exactly where did THAT expression come from?). Not engaging is a show of strength. Engaging gives the idiots power. There are ways of asking for help, getting it and still maintain self-respect. DBT calls them Interpersonal Effectiveness.

Don’t engage with people who are rude, engaging gives the idiots power.

Written March 2016. Reviewed September 2018.

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I’m Baaacccckkkk!

I went back to work this week. It was only part-time and may be part-time for the foreseeable future, but I am back. I think.

I have been told I set a land speed record in getting back to work. I don’t see it as anything extraordinary. Everyone has something they have no intention of giving up for a disability. A lot of people don’t want to give up driving – ever! Others insist upon playing golf or attending church every week. I want to work. I pretty much need to work.

I have done this job for 38 years. It is my profession. In many ways it is my identity and my purpose.

I am a fortunate person. Instead of a cloud of misfortune, ‘dumb luck’ has followed me around pretty much my entire life. When I stop to consider how fortunate I have always been, it is a little unsettling  – when is the tide going to turn? However, I try to give thanks for this crazy, incredible run of good fortune whenever I can.

I have been fortunate to have the help of a lot of good people in getting back to work. My husband takes me in and a friend drives me home. Blindness and Visual Services (BVS) has helped to fill my office with ‘toys’. I have a CCTV and a handheld reader as well as a zoom feature on my computer. My low vision specialist has me trying ‘funny glasses’ that magnify and either allow me to read or – another pair – to look over a classroom full of kids. Thank you.

I’ve been fortunate to have a lot of help in getting back to work from my husband and others driving me to and from work and from the people getting me my ‘toys’.

People on the job have been very supportive. The custodian set up my CCTV. The computer person has been scanning materials onto a tablet so I can enlarge them.  I have literally been welcomed back with open arms by many staff. Thank you.

Very importantly I have been welcomed back by the administration. I am being given a chance to prove myself. They have been willing to work with me even though things are going to be a bit ‘different’ from now until I am either retired or forced by the disease or finances to go on disability retirement. Thank you.

I’ve been welcomed back by my co-workers and the administration. Thank you.

As I said, I have always been fortunate.  Not everyone gets to work with the kind of people I work with, for example. I have not once had to utter the phrase ADA but maybe you will.  ADA is the Americans with Disabilities Act. As much as it is hard for me to wrap my head around it, I now come under this act. Damn.

The ADA says no employer with 15 or more employees may discriminate against an employee based on a disability in any aspect of employment. The law stipulates that both the employee must be able to perform essential functions of the job and that the employer must make reasonable accommodations in the workplace. The employee and his reasonable accommodations must not create undue hardship for the employer, his business and his clients.

The American with Disabilities Act (ADA) has laws governing the rights of the disabled employee and the employer in companies with 15 or more people.

There are a lot of other things associated with ADA. For example, these are the laws that gave us ramps and cut curbs. However, I will be staying with this simple information in this posting. Follow the links if you are looking for more.

How does ADA affect me? I am back to me with all of my cool toys.  At least for now. I have told my boss to watch me. How am I doing? Am I making mistakes? Am I too slow?

My ‘undue hardship’ would fall squarely on my students. Not having that. That is why I’m back…I think.

I’m back to me with my cool toys and under the watchful eye of my boss.  I won’t let my students be affected by my ‘undue hardship’.

Written March 2016. Reviewed September 2018.

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Sim City for Low Vision Folks

I have already written a love letter to Amazon. Today I am going to write a love letter to the Apple app store. So, I’m fickle. Shoot me.

There are some cool, free things in the App Store. I downloaded a magnifier that uses the camera on my tablet to take images and enlarge them, for example. However, today I want to talk about the Macular Degeneration Simulator.

People are great. I said that before but it bears repeating. People are great but unless AMD has touched them directly they have not a clue what it is. You know how people hear ‘visually impaired’ or ‘centrally blind’ and all they think about is total sight loss! People have a lot of wrong ideas about what is going on with us AMD folks.

People are great but many hear ‘visually impaired’ or ‘centrally blind’ and all they think about is total sight loss!

I have had several people take my arm and try to steer me. Sweet and caring thoughts are behind the actions. However, I don’t really need that kind of help. I can still navigate pretty well and expect to be able to do it for some time to come.

Several sweet people have taken my arm to try to steer me but I can still navigate pretty well.

I have also had several people suggest I get a dog. To begin with, the beastie baby is used to being an only dog. Also, unless you can find me a dog that can read, tell me whom I am looking at and drive, I have no use for a service dog.

Like I said, people are great, but they don’t get this Macular Degeneration business. Enter the handy-dandy Apple AMD Simulator.  On your iPhone or iPad go to the App Store and search for ‘macular degeneration rnib’. RNIB stands for Royal National Institute of Blind People. [As of October 2018, the iPhone version of this app is NOT available but there is a version for the Apple iPad. Check the App Store on your iPad.]

I downloaded this app from the App Store. It is a great price: free. It has four settings: normal, early, middle and *shudder* late disease. The late simulation scares the bejesus out of me.

The Apple AMD Simulator has 4 settings: normal, early, middle and *shudder* late disease.

How I see is worse than early and less than middle. I went from basically normal to that in about two weeks time, but that was an earlier post.

I have been using the AMD Simulator to show people how I see. A fair number of them have expressed relief; they realize my vision is not great, but not as bad as they had feared (at least not yet). The late setting scares the bejesus out of them, too. It makes me feel good that they understand and feel better. Also, being an educator at heart, I feel good that I have been able to share some knowledge.

So there that is. If you have folks in your life who don’t get it, try showing them how you see. The AMD Simulator is in the App Store and it is free.

I highly recommend the free Apple app AMD Simulator to show folks what AMD actually is.

Written March 2016. Reviewed September 2018.

Attention Walmart Shoppers

I had two ‘firsts’ yesterday. Not that I had not done them each a thousand times before but these were the first times I had done them as the new – but not necessarily improved – me.

The first new thing I did was go into Walmart  – alone. I was not thrilled with the idea. As I said before, I cannot see faces and Walmart was full of people. What if I snub somebody again? Also the day before I had gone to Staples and had trouble with the credit card machine. Came out of there in tears. Something so simple and I had screwed it up!

Just the same, my husband was not going in with me, so I put on my big girl panties and sallied forth. Here goes nothing.

First thing, make sure you know where the car is, Susie Q. I have already walked up to strange cars at the dog park. If anyone had actually been in them it would have been embarrassing.

I got in the store and got a cart. I know Walmart and knew what I needed. The problem came when I had to read what was in the cases of frozen foods.

Now, sticking your nose on boxes of frozen meals so that you can read them is probably frowned upon by health officers. We won’t even discuss the possibility of getting your nose stuck! So, I did a little Radical Acceptance (DBT concept) turned my mind (DBT alert here!) and got out my near point clip-on magnifiers. Sigh.

clipons
These are my clip-on magnifiers. They look very much alike but the one on the left side is for looking at things close (called near point) & the other is for looking at things farther away (far point).

Turning your mind is a DBT concept that says acceptance of a problem does not happen in one fell swoop. Shazam! I accept that I am visually handicapped. Uh, no. Acceptance happens over a series of decision points. I did not get my clip-ons out at Staples. I did not accept that I needed them and turned away. Bad decision. In WalMart I decided I needed to turn towards the truth and accept that I needed the help. Sort of bite the bullet – a dozen times a day if necessary.

Acceptance happens over a series of decision points. I didn’t use my clip-ons at Staples but I need to use them at Walmart.

OK. So I have two pairs of really funky looking clip-on magnifiers. One for near and one for far. Let me tell you, people stare. They especially stare when I flip them up and it looks like I have…what? Antennae ?

At school I have been working on the problem by having class meetings. “This is why I look stranger than usual. ” “This is what this is.”  What am I going to do at WalMart? Put it on the PA: “Walmart Shoppers, Please do not stare at the strange woman presently in frozen foods.” ?

So, I put on the clip-ons and people stare. So be it. I was able to use the credit card machine. Score.

I even put on my far point magnifiers to find my way across the parking lot. Technically not supposed to do that. They are actually for TV viewing and you are supposed to be stationary. Having everything magnified messes with depth perception. However, I was able to find the car and did not run into anything.  Besides, the far point magnifiers make me undershoot, not over shoot. I reach for something and it is a foot beyond where I thought it was. All sorts of new problems. Sigh.

I used my far point magnifiers in the parking lot and did not run into anything.

I also took my far point clip-ons with me on my second new me first. I rode my bike! To get to the trails I use, I have to cross two fairly major roads. I “turned my mind” towards acceptance of my limitations and walked my bike across the roads. Did not want to but I wanted to be roadkill even less. Used my far point clip-ons to check for traffic. If the drivers stared, I could not see them.

Written March 2016. Reviewed September 2018.

Continue reading “Attention Walmart Shoppers”

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