Category: Tips for living with low vision

Breathe and Accept

Today gets mixed reviews. I taught, which I love. My husband got transferred to a rehabilitation center here in town. That will make things easier than having him in a neighboring town.

I am still at the mercy of other people’s schedules. It is what it is but it makes things damn inconvenient. Have to accept it as the best that I can do now.

I am doing the best I can do but I can do better…..I just haven’t figured it out yet!

While waiting for my ride to the rehab, I did my first Amazon Prime Pantry order. I took a free, 30-day Amazon Prime membership to save the shipping cost of $5 and some cents. I got 16 things in the box. The way they work it, you fill a box with groceries. Their computer keeps track of how full your box actually is. With a little bit of effort I got mine to 99% full. Shipping is always the same price so packing the box without over packing is good economics.

Amazon Prime Pantry offers nothing fresh, nothing frozen or refrigerated. (At least in my area. I have been told these are available in urban areas. Click here to learn more about AmazonFresh.) They do have bulky items like laundry detergent and packs of paper towels and toilet paper. Getting those things delivered might be a good idea. Those might be a little tough to walk and carry or take on transportation.

The box is supposed to come in two days. I will give you an update then.

When I got home, the Beastie Baby went crazy. She has been alone too much. I wasn’t going to walk her but I needed milk.

We killed two birds with one stone and walked together to the convenience market.

Since it was after dark, I definitely wore my reflective vest. A lot of what I read said that if you cannot see them, it is doubly important that they can see you. Most of them – the vests, not the drivers! – are adjustable but make sure what you get is big enough just in case. In the winter I wear mine over all my layers of clothing.

Considering I look like the Michelin man in winter, it needs to be plenty big.

Well I really need to go to bed. The crappiest thing about today? The transportation people messed up right out of the gate. The ride I ordered for 8 o’clock is coming at 7!!!!!!

Breathe and accept. Breathe and accept. Try to do better next time. Sigh.

Continue reading “Breathe and Accept”

Highlight: Is there any way I can learn to better use what vision I have?

It’s Linda and today I have AMD.  Let me explain.  I want to share what I know about Eccentric Viewing which is a way to maximize the peripheral vision that you do have in order to read text and see faces and objects when robbed of one’s central vision.  I do not have AMD, that’s Sue. Because my Dad had it, I know that I have a 50/50 chance of developing it plus I have a few other risk factors. Having gone through the experience of Sue developing AMD & and doing research for the website, it is a much more real possibility that I will develop also AMD.

I’m simulating AMD by putting dots on my eyeglasses where my central vision would be

I decided to do a mostly unscientific experiment. I cut out dots from the top of a sticky note and pasted them on my eyeglasses.  I had to look in the mirror to find the right positions because my blind spots would not in the exact center of my glasses.  My spots are not perfectly round nor are they exactly in the middle because that would be how it is naturally.  The actual blind spot on the macula of the eye would be tiny but I had to represent it as it would appear in my visual field.  At first I thought that this would not be an accurate simulation because my glasses correct my vision but I know Sue and others wear corrective lenses to maximize the remaining vision (more about that below).  I’m sure this is not exactly accurate but I think it’s the best I can do.

Two observations right away: 1) I’ve developed a queasiness that I can’t explain but I’m guessing it is partly a physical reaction to the vision changes but also an emotional reaction to experiencing AMD.  As for the physical issues, I have serious astigmatism so my eye doctor adjusted my glasses and I’m guessing that some of the most extreme corrections are in the peripheral vision areas and that is not where I’m used to looking; 2) I found it hard to take a selfie because to do this, I had to look straight ahead.  I did much better navigating in the house probably because it is familiar.

On to Eccentric Viewing.  AMD robs us of our central vision but the peripheral vision is spared.  You may lose the ability to see text or a person’s face if you look directly at it or them but you should be able to look to the side or above or below the center and make out some of what’s in your peripheral vision.   You can learn ways to maximize the vision that remains.

Eccentric vision is one technique to do this.  It takes some practice but you can teach yourself.  The diagram below defines the Preferred Retinal Locus (PRL) which is the place where your peripheral vision is the best.  For example, as I simulate AMD wearing the dots, at first I moved my head around (not the best way) & I found that with my left eye (right eye closed) my vision is best on the right side of my visual field. With my right eye (left eye closed), my PRL is to the left of my visual field.  That doesn’t help me with both eyes open and looking straight ahead.  If I had AMD in both eyes, I might choose to read with the eye that has the best PRL. Has that been the case for any of you?

ecc_view_dia_txt
Click on the image for an article with more details.

Click here for instructions on how to teach yourself Eccentric Viewing.  As I followed the instructions, I found that it was hard to keep my head still as they instruct.  My first reaction was to move my head left, right, up and down not my eyes.  I’m sure that would change with practice.

Click here for another article about Eccentric Viewing.  It explains some of the science behind the technique.  It also says that the biological task of this way of viewing takes some time. They say it becomes second nature with 6 sessions with a certified low vision specialist and practice at home.

Here are some more articles:

Click here for an article that explains more about PRL (Preferred Retinal Locus).

Click here for an article on Steady Eye Technique (also called Steady Eye Strategy) which basically talks about maximizing the vision you have.

Click here for a great article that talks about both Eccentric Viewing and Steady Eye Technique as they are used together.

Click here for the definition of Eccentric Viewing through the details of a study done on reading with peripheral vision.

My thoughts after several hours of ‘having’ AMD:
  1. I never doubted that Sue was right in that dealing with low vision is tiring.  Everything that I tried to do took much longer.
  2. I was reminded that our ability to see things is not only a function of the eyes but a function of the brain.  When we change input to the eyes, the brain will try to adapt. I had an experience of this when I tried contact lenses where one eye had a prescription for near vision and the other eye for far vision. It didn’t work, my brain did NOT cooperate. They can do that with Lasik surgery but I wouldn’t recommend it unless you have tried it with contact lenses first.
  3. I can see that Eccentric Viewing/Steady Eye Strategy is very useful but I can also see that much practice is needed.
  4. I’m going to try to talk to my eye doctor about this but I suspect that making a prescription for eyeglasses AFTER central vision loss is different from when a person can use the whole visual field.  That might mean that wearing eyeglasses that you had before the vision loss is not a good idea.  If you’ve had this experience, please leave a comment or contact me directly.
  5. I can see how important things are like proper lighting and good enlargement of text.  I had to move a lamp closer to my computer and had to move it several times to avoid glare on the computer screen.
  6. I can take the dots off of my eyeglasses for which I am TRULY grateful.  My heart goes out to each and every one of you who cannot.

If you have learned or tried to learn any of these techniques, we’d love to hear about your experiences.  You can post a comment here or contact me directly at light2sight5153@gmail.com

Highlight: Where can I get podcasts?

Do you know what a podcast is?  Click here for a great article that explains what they are and how you can find and access them.  It also has a great list of podcasts for those with low vision including ones from RNIB (UK) and several about technology for people with low vision.

For the purpose of this page, I’m not including sources for audiobooks.  That’s a topic for another page!

  • For topic-specific podcasts such as the ones related to blindness or low vision in the article above or the list below, go to their website for information about availability across devices.
  • For podcasts on a variety of subjects, use one of the software websites or apps that have gathered podcasts from a variety of sources such as TuneIn, iTunes or Stitcher Radio which are listed below.
  • For topics specific to a service such as NPR, CNN, Time Magazine, etc, go to their webpage or tablet/smartphone app.   Many of their programs can also be accessed through TuneIn, iTunes or Stitcher Radio which are listed below
  • To customize your own playlist, use what is called a podcatcher where you can search for and follow specific podcasts. You might use this if you find podcasts that you like that are not found on the same services such as TuneIn, iTunes or Stitcher Radio.  This is a little more complicated in that there are various programs to do this (I won’t be talking about that now but here’s a link to a list of podcatchers).   Some are also capable of catching video, news feeds, text, and picture.  Here’s a link to some of the best of them as defined by Tom.
Sources for podcasts related to blindness or low vision

This is NOT a list of all of them.  If you don’t find what you are looking for, I suggest you do a search using your favorite search engine with keywords such as ‘blind, low vision, podcast, audio’.

RNIB Connect Radio From the UK, they not only have podcasts but they have news and other programs/programmes, but though RNIB Connect Extra you can listen to various programs through the day. They also have a Facebook page.

Blind Living Radio is hosted by Harley Thomas with the help of special guest hosts.  They say: “We will cover topics ranging from life with a guide dog to advances in assistive technology. Nothing is off limits on Blind Living Radio.” From iTunes (see below) for Windows and Mac.

BrightFocus Foundation has a list of audio files. It is listed as Macular Degeneration: News You Can Use.  This app allows you to access the podcasts from the BrightFocus Foundation. Currently, there are 40 of them. You can play them on their website or though iTunes or through the App Store on your iPad, iPhone and iPod.

This website called Newsreel Magazine files that you can download.   The 3 hour monthly magazines consist of contributions from subscribers, often in their own voice. Formats available: instant download (mp3 file), NLS (National Library Service digital cartridge, audio CD (mp3 files), and 4-track cassette. They also have a Facebook page.

Talking Computers is a free monthly audio magazine about using computers with low vision.  Available as a download to use with iTunes through the App Store on your iPad, iPhone and iPod.

Mystic Access is packed with podcasts regarding the use of computers. Available to play from webpage or download.

Audio Internet Reading Service of Los Angeles (AIRSLA), an Internet-based radio station that broadcasts to those who have limited or no vision.  The range of topics they have is amazing, everything from periodicals to using technology to cooking.  Click here for list of categories of podcasts. You can click and listen for free to them on your computer, iPad, iPhone or iPod.  They also have a Facebook page.

Blind Planet has a variety of types of podcasts including tutorials and reviews of technology topics. Available to play from webpage or download.

Most popular sources for a variety of podcasts

TuneIn Site says that it “enables people to discover, follow and listen to what’s most important to them — from sports, to news, to music, to talk. TuneIn provides listeners access to over 100,000 real radio stations and more than four million podcasts streaming from every continent.” There are local stations as well. They have a Facebook page.

  • You can play the show directly on your desktop/laptop or download them.
  • Apps available for iPad and iPad (App Store) and Android (Google Play)
  • free and premium (subscription) options available.

Stitcher Radio for Podcasts  Here’s the description: “Listen to your favorite news, comedy, sports and talk radio shows and podcasts ON DEMAND from your iPhone or iPad. Discover the best of NPR, CNN, Fox, BBC, WSJ, Adam Carolla, Joe Rogan, Rachel Maddow, Rush Limbaugh, Fresh Air, Freakonomics, Radiolab and over 25,000 shows, podcasts and live stations. Change the way you listen to radio – on your schedule, not the schedule of traditional stations.” They have a Facebook page.

  • You can play the show directly on your desktop/laptop or download them.
  • Apps available for iPad and iPad (App Store) and Android (Google Play).

iTunes They say they have hundreds of thousands of free podcasts and that you can create your own. This link will get you to the ‘How to’ about podcasts.

  • You can play them through the iTunes software that you download onto a Windows or Mac computer.  On your iPad, iPhone or iPod, if you are keeping your version of IOS up-to-date, there is an app called Podcasts. If it’s not there, you can download it from the App Store.  To be honest, I do not know if you will be accessing the same podcasts or not.  I do know that you can sync them between your Apple devices: click here for the instructions.
Other podcasts and audio file sources

NPR This is a link to the podcasts on their website.  There are also iPad & iPhone apps to download from the App Store.  Their podcasts are also available through iTunes, TuneIn and Stitcher.

NY Times This is the link to the podcasts on their website where there are podcasts for music and book reviews.  There are iPad and iPhone apps by subscription.

CNN This is a link to the podcasts on their website.  There are also iPad & iPhone apps to download from the App Store.  Their podcasts are also available through iTunes, Tunein and Stitcher.

Time magazine This is a link to the podcasts on their website. The subjects include entertainment, politics and more!

Coming eventually: How can I keep up with my reading with e-books and audio files?

Do you have a favorite podcast or source for podcasts?  We’d love it if you’d share it.

Whirling Dervishes and Others

I was working on my next lesson. We have done the two, introductory lessons and we are getting ready for mindfulness, lesson one.

I throw a lot of extra ‘stuff’ into a lesson. I was looking at information related to the origins of mindfulness and mindfulness meditation. Mindfulness meditation has a rich and ancient history rooted in the religions of the world. There are mindfulness mantras in many religions.

A mantra is a repetitive song. “Om Shanti Om” is the peace chant of Buddhism (but if you want something really wild, click here for the “Om Shanti O” song on YouTube. Holy Bollywood, Batman!). [Lin/Linda here: the video is indeed a Bollywood version. I recommend this version by Deva Premal. Best to listen to it with headphones, she has a very incredible lyrical voice.]

Gregorian chants can be seen as Christian mantras. Click here for one video. There are many others.

You use your voice and a repetitive song as the focus for your attention. Sound meditation as prayer.

For Whirling Dervishes, part of the Sufi tradition, the focus of attention is on the repetitive spinning….and on Allah. Movement meditation as prayer.

In short,  it dawned upon me mindfulness practice – including repetitive, rhythmic stimuli – and prayer seem pretty closely linked. Mindfulness can focus attention necessary for prayer, for example. Prayer can be used as a point to focus attention. Repetitive stimuli can calm lower brain centers  which in turn allows you to be more mindful and pray. Hmmmmm…how about that?

DBT lists prayer as a distress tolerance skill. It is a way to get through a crisis with as little suffering as possible.

Linehan lists three types of prayer. Linehan talks about “why me?” prayer. To me, this sort of prayer sounds pretty whiny. It sounds like plenty of suffering has been attached to the pain. Why? Because the person is fighting reality.

Remember: it is what it is. There really is nothing that can be done to change reality.

DBT suggests we don’t fight reality. The opposite of fighting reality is acceptance. In other words, thy will be done. I accept things are the way they are. Remember acceptance does not mean approval. It just means you are willing to accept and operate within the new rules of the game.

Psalm 40 verse 8 is about accepting and acting in accordance with the will of God for example. Psalm 37.23  is another example. There are probably dozens if not hundreds of other examples in the world’s religious tradition. These may help keep you from the suffering fighting reality brings.

Another thing about acceptance through prayer? If you are a person of faith, there may be a little internal voice that says to you “I’ve got this.”  When you are dealing with something above your capabilities, it is nice to feel you have some ‘expert’ help available.

Linehan also talks about the distress prayer. Her distress prayer is pretty much an extended version of my “Oh, s***! Help!” prayer, with the distress prayer asking for solutions over time.

My “help!!!” prayer is usually uttered in the face of imminent disaster!

I am not a religious scholar by any means but in my lexicon there are two more types of prayer. They are “Wow! Nice job!” and “Thanks”. In other words, they are praise and gratitude prayers.

Praise and gratitude prayers are positive things. They help us recognize we really are not bereft of all good things. In the cases of many of us reading this, AMD may have taken many things away but many wonderful things and many things we can be grateful for still remain. Sometimes we just need a reason to notice them.

List good things for a gratitude prayer.  Close to the idea of accumulating positives; yes? Yes!

So repetitive, rhythmic stimuli/ movement, mindfulness, acceptance,
praise, gratitude, accumulating positives… they all seem to come together in prayer. Cool.

Continue reading “Whirling Dervishes and Others”

Miscellaneous

This is another page without a discernible focus…yet. I started to look for some help on my orientation questions and found all sorts of other stuff. I am just going to throw it out there in a pile and you can sort it.

First of all, I discovered the American Foundation for the Blind has a whole website dedicated to us newbies, people who are starting to lose their sight. It is visionaware.org.

In true baby boomer fashion, we are rocking the world. AFB just started this site not long ago. I am reasonably sure the site was created because there are so accursed many of us in the same boat. If misery loves company, we have a lot of it. Just remember the upside of there being so many of us is that we get noticed.

Said it before, say it again: if we have to be going blind, this is the best time yet in history to be doing it.

Anyway, visionaware.org has all sorts of topics listed. I saw listings for safety in the potty and learning how to ski. Wide variety of stuff. Check it out.

I also saw AFB had a book advertised – they have a book store btw – and it looked decent. The title is Making Life More Livable: Simple Adaptations for the Homes of Blind and Visually Impaired Older People. Since I am now an official visually impaired person and I have my official visually impaired person’s BARD account, I downloaded it….for free. It is a short book. I will listen and see if there is anything there to “write home about”.

Like I said, I found all this stuff by searching for orientation information. I printed an article, again from AFB, about using either Apple Maps Connect or Google Maps for getting around. Guess I really should get on that….and about a half a dozen other things I should do.

No rest for the wicked. Type at ya later.

Continue reading “Miscellaneous”

A Black Hole?

I really liked it when I wore contacts. I would put them in my eyes in the morning and take them out at night. Most of the time I knew where they were although occasionally they seemed to have gone so far into my head that retrieval may have been easier to fish them out my ear!

From the contacts I went to contacts plus reading glasses. My contacts were correcting for far and farther vision and my glasses were correcting for near and nearer.

Now I have a pair of glasses that was supposed to have pretty much every innovation available on the market. They were supposed to be the ultimate solution, or at least as ultimate as you can get. Then the Macular Degeneration hit. I wear these things about half of the time. The rest of the time l lose them.

It’s not that they are totally useless. I need the glasses for far vision. But far vision is required for only a fraction of my day. Putting my nose on the paper or the screen and using my assistive technology, I have found the glasses make what I see blurrier, not clearer. I take my glasses off.

I take my glasses off and they disappear. Poof! Magic? A black hole following me around? Dunno, but they are GONE.

This morning I spent a good quarter of an hour looking for my glasses. Do you know how frustrating it is when you can remember where and when you last had something, canvas that place and all of the ‘usual suspects’ places and still nothing turns up? Grrrrrrrrrr!

After I found the glasses (they had made a daring leap from the bathroom sink and hidden in the clothes I had taken off last night and left on the floor. (Not Susie Homemaker or Becky HomeEcy, remember?), I made a decision. I was going to put the glasses on a chain. (Sigh. When did we become our elderly, high school English teachers?).

I dug out a canary yellow, stretchy plastic glasses chain. The whole package now is a little larger and YELLOW. Should be easier to find. Being able to just drop the glasses and have them hang around my neck should be a plus, too.

Only one question: if I actually follow through with this plan, what am I going to do with my extra time?

Continue reading “A Black Hole?”

Still No Milk or Eggs

Hi, I walked down to the convenience market today. 90° temperature and what feels like 1,000% humidity. I probably could have picked a better day but since I am stuck at home with little to do, it seemed like a good day to do it. The store clerk said I had to buy 3-2 liter bottles of Pepsi to get the discount.

Have you ever hauled 3-2 liter bottles and a half a gallon of milk home in the humidity? Zounds.

It made me more interested in finding, shall we say, alternative food sources. I went on line and discovered Walmart will deliver some things! They have specific items that are free shipping if your order is over $50. They also have something they call “value shipping”. Not sure what that is. The prices look very close to what they are charging in the store…at least before shipping.

Walmart, like Amazon, sells a plethora of things. Walmart even has milk that does not need to be refrigerated. There are no eggs for shipping, however. Not even the kind that you pour out of a carton.

If you still want eggs, many of the Walmart have people who will collect your order ahead of time for you. They will even come out and put it in the car. Easier to do that than to ask the neighbor to actually go in and do your shopping. You are also in charge of the money because you pay on line.

And speaking of money, today I also discovered it might be cheaper to pay shipping costs than to get a taxi to the store. Cab fare in this town I was told is $10 one way wherever you are going inside of town limits. Ouch. Hopefully it is cheaper in your town.

The taxi person I talked to suggested I follow-up on getting my disability transportation approved. I agreed!

For you? I would suggest if there is subsidized transportation available, apply for it. Even if you don’t need it now, you might need it tomorrow. Things had been going well with transportation for me…until today. It would have been good if the  subsidized transportation had been in place. Get things in place before you need it.

Some of you may have other options for grocery delivery in your area:

Continue reading “Still No Milk or Eggs”

Highlight: Why should I be concerned about ‘blue light’?

There’s been a lot of talk lately about ‘blue light’.   You’ve probably heard that it is bad for those who do not have AMD and also for those who do.  The question is what is it and what evidence is there that it is bad for us?

Click here for a very extensive article that:

  • explains the visible light spectrum and tells how it affects our eyes.
  • provides references to blue light research.
  • points out that our cornea & lens (refer to the illustration) filter some of the blue light and that the yellowing of the lens in the development of cataracts helps to filter out blue light.  For that reason, when the natural lens is replaced with an intraocular lens (IOL) in cataract surgery, we lose that protection.  Some doctors insert an IOL that is tinted to block blue light.   Some say that if this is done, it cuts down on our ability to adapt to dark conditions which causes some to have poor night vision.
  • explains the terms used to refer to visible light.
  • discusses the difference types of lamps with pros and cons and gives specific descriptions of what’s available.

Click here for another great article about how the violet and blue light of the UV spectrum can worsen AMD.  The article says that the sources of violet/blue light are “sun (main source), computer screen, phone & other mobile device screens, full-spectrum lighting (ie, used to treat Seasonal Affective Disorder (SAD), fluorescent lighting, LED lights, high intensity mercury vapor lamps (for night sports and high-crime areas), and xenon arc lamps.”

Click here for a more technical article that addresses the effects of blue light on sleep and eyestrain.  It also answers the questions:

  • How does blue light affect eye strain and sleep?
  • Should I block all blue light?
  • Are my eyes just sensitive to blue light?
  • What are software solutions and physical blue light filters?

What can we do to block blue light?  Here are some suggestions:

Do you spend a lot of time on the computer and other electronic devices?  

Click here for an article that describes some ways we can be protected from the blue light emitted from them. It also describes the new feature called Night Shift for the iPhone and iPad that filters some of it.  For Windows devices, there is an app Windows f.lux.  Click here to find out how to download and install it.

You can also get screen protectors and ‘computer glasses’.  I talk about them below.

Do you spend a lot of time outside?

You need to wear sunglasses that filter out the blue light from the sun. Click here to go to a post about how to choose sunglasses.

Do you need eyeglasses or contacts?

Even if you have IOLs (the lenses implanted when cataracts are removed) that block blue light, my eye doctor told me that the amount of blue light filtered isn’t that significant so additional blocking is advised.

You can get the lenses coated to filter out blue light.  Kodak Bluelight Reflect is one. Crizal Prevencia is another.  Click here for other products. Talk to your eye doctor or optician about what they offer.

As far as coating for contacts, that’s available also.  This article talks about tinting for cosmetic reasons but there is also a section that talks about adding a UV coating to them. At the time this article was published, they said none of them should replace sunglasses with good UV filtering. To be honest, I don’t yet know if you can have blue light coating on contact lenses.

Do I need special ‘computer glasses’?

If you do not wear eyeglasses or wear them but don’t have a good protective coating on them, you might consider a pair of glasses with protective coatings but no prescription to reduce glare and blue light transmission.  Even if you have IOLs (the lenses implanted when cataracts are removed) that block blue light, my eye doctor told me that the amount of blue light filtered isn’t that significant so additional blocking is advised.

Click here for a good article about what computer glasses are and how they work.

Can I filter blue light from my electronic devices without specially coated eyeglasses, contacts or ‘computer glasses’?

Yes, you can buy screen protectors for your devices.  Click here for a very extensive discussion of them.

Do you need cataract surgery?

Talk to your doctor about the tinted IOLs that can be inserted (refer to first article above or click here).

What kind of indoor lighting do you have?

Again, the first article above gives a great overview of the terms used to refer to visible light & discusses the different types of lamps with examples.

  • Neither Sue nor I get any commissions from any of the products included here.

Say “Cheese”!

I am starting to think we should all move to Wisconsin. Every time I go looking for something related to the support of the visually impaired I end up on a site supported by that fine state. The only problem with moving to Wisconsin, though, would be having to wear those cheese wedge hats. Hmmmm. Maybe I will pass on that move.

Green Bay Packers linebacker A.J. Hawk wearing Cheesehead hat
Green Bay Packers linebacker A.J. Hawk wearing Cheesehead hat

[Lin/Linda here: I suspect those of you who are outside the US are wondering about this, are you?]

Click here for more information about the term ‘cheesehead’ as used in Wisconsin.

 

 

I had gone looking for more practical life skill-ish stuff for coping. I have already done some psychological coping stuff. Add the lifestyle coping skills stuff to the DBT stuff and we have talked about emotional coping a fair amount. Probably will hit it again with mention of other DBT skills later.

But for now what about the practical stuff? The Health Department of Wisconsin published Tips for Living with Low Vision. The site is not only low vision friendly in content but also in format. Sentences are short. Fonts are large. Lots of white space.

Topics range from brushing your teeth to sewing. I am not having trouble putting toothpaste on a brush yet and I don’t sew. My junior high home economics teacher took care of that when she made me rip out a seam in my project seven – count them! Seven!- times. No, I do not sew.

What I do do, and seem to do more since having my visual impairment, is plug things in. Or to be more accurate, I attempt to plug things in. Better than half the time the outlet is in a corner, in the dark, behind the furniture, etc.

Once I find the outlet I then have the chore of deciding which end is up! I twist plugs around until they are dizzy.

The website suggests using contrast and bright colors in order to find the outlet in the first place. The site also suggests plugging in the plug should be a two-handed job. One hand holds the plug while the other hand outlines the outlet. Not sure those instructions will solve my problem with outlets but the suggestions are worth a try. [Here’s a tip from our Occupational Therapy consultant (bottom of linked page): for difficult-to-access wall plugs, get a power strip and plug it into the wall. It should have a cord long enough so that you can put it where you can easily access it next time.  The plus side of this is that you’ll have extra outlets/plugins.]

Check out the website for a number of other helpful suggestions. It appears the good people of Wisconsin do a lot for us low vision folks. If you know a Cheese head, thank him….and try to ignore the hat ?

Continue reading “Say “Cheese”!”

You Look Good!

I went into another office I am supposed to be working at. I had not been there in about three months. Waiting on the specialized materials I need, you know. The first thing out of several peoples’ mouths? “Well, you look good!” Incredulous. Really surprised.

This is not the first time I have heard this. Several people I have seen for the first time after my vision loss have said it. “You look good!” What exactly am I supposed to look like?????

Since the people yesterday were all counselors, I figured they could handle the question. What am I supposed to look like? No one could answer me what a visually impaired person is supposed to look like.

So what is that stereotype that I don’t fit? Am I supposed to be disheveled? Depressed? inarticulate? Frankly, I don’t know.

I looked up stereotype + blind and found a Washington state site. It said a myth about vision loss is in itself a tragedy. OK. It is no walk in the park but what good would it do me to sink into dark despair? Besides, most people weather tragedy. The human condition is very resilient. We may not come back 100% but we generally come back to our happiness baselines. Wikipedia refers to this as the happiness set point. I have always been the Pollyanna type so my set point is pretty high.

A study published by Sigma Theta Tau, the honor society of nursing, confirmed some ‘common sense’ about life satisfaction and vision loss from AMD. People with more loss, more trouble with activities of daily living and/or more additional health problems are less satisfied with life. Maybe they are the ones who look the way they are ‘supposed to’ look.

I am healthy and have taken advantage of nearly everything offered to me. Not proud when it comes to getting help to function better.

Well, how about inarticulate and….well, dumb? Should I have lost IQ points along with points on my eye screening? I have not had this happen to me – yet – but Lara has stories about people ‘dumbing’ down the conversation when they discover she is blind. Really? Enough said about that.

How about personal appearance? Aren’t the visually impaired supposed to have problems with that? I should look like an unmade bed. Right?

I still maintain a lot of vision. I have a husband who will tell me if things don’t match. I can learn basic tricks from my habilitation person. There is no reason for me to become slovenly in my personal appearance. Besides, truly, how many slovenly blind people have you ever see? Personal grooming is important for social acceptance and self-esteem. It is something that is stressed with people who have severe visual impairment.

Click here for some tips about personal grooming.

So whatever the stereotype is, I apparently don’t fit it. Not sure anyone does. I appreciate being told I look good, but could you stop sounding so SURPRISED about it ???? Continue reading “You Look Good!”

ChaChaChanges

Good morning. I don’t have to be anywhere until 10 this morning so I thought I could write a bit first.

First of all, I put something light-colored at the bottom of the steps. I need to get a nice rug but at the moment what I put there will do. I decided it was better to ‘turn my mind’ towards acceptance rather than turn an ankle as I nearly did the other day when I missed that last step. The contrast – just like my Vision Rehabilitation Therapist (VRT) said – helps me to see there is a change there. In this case the change is from the step to the floor, but it could be anything.

My VRT also suggested I put a white sheet of paper on my dark table at work. I am supposed to put anything dark – like my pens or my stopwatch – on the white sheet of paper. That way I will be able to find things I have put on the table a lot easier.

Tip 1: To provide contrast where there is a dark background, I put down a light-colored rug so I don’t miss the last step.  To provide contrast on my dark-colored table at work, I’ll put down a white sheet of paper where I will put anything dark so I can find things easier.

Another thing the VRT suggested was ‘dots’. I saw these when I was looking through the visually impaired section at Amazon but I had no clue what they were. Apparently these dots are to place on things to get you oriented. The VRT said I could put them on the number pad for the microwave. Really anyway I would want to do it. Maybe a different color one each on the 1, 2 and 3 so that I would know where they were and then go down the columns from there. I don’t know about you, but when I first got ‘bad’ (‘bad’ being a relative term, of course), I incinerated a fair amount of stuff. These would have been helpful then and I suspect I will find a use for them in the future.

Click here to see an example of ‘bump dots’.  You can get them in various colors and there are ones that are clear, too.

Tip 2: Get some ‘dots’ on anything that requires you to orient yourself. For example, I might get different colored dots to put on the numbers 1, 2, 3 on the microwave pad so I would know where I was & can go down the column of numbers from there.

Another thing she suggested was something we teach intellectually disabled students at school. It probably has a real name but I just call it the “1 plus” method. You put something in the microwave for one minute and then check it. If it is not hot enough, you put it in for another minute. It may get a little tedious but it can save on the grocery bill by keeping things from being burnt.

Tip 3: To avoid burning things in the microwave, I can use the ‘1 plus’ method which is to put something in the microwave for one minute and then check it.  If it is not hot enough, you put it in for another minute.

My VRT wanted to give me a bunch of other stuff for getting around the house and doing the – gasp – domestic goddess routine, but since a) domestic goddess I am not and b) I am still able to do just about everything I need to do anyway, I asked her to hold off on that discussion until later. She said that her services would be available again as needed. Good to know.

Oh, one more thing, my VRT told me about a ‘pin code’. Telling me if the colors match has become a job for my husband but if you don’t have a handy person to make the call, my VRT suggested you get a consensus on whether something is black or navy and then ‘pin it’. She suggested one vertical and one horizontal but I suspect you could pin one right leg, one left or however you wanted to.

Tip 4:  Since it’s harder now for me to tell if colors match, I can ask my husband to tell me if a piece of clothing is black or navy and I can ‘pin it’ by putting a pin in horizontally if it is black and vertically if it is navy. Or you could pin the right leg if something is black and the left leg if something is navy.

That’s about it for now. Have a good day!

Ps She gave me pens that won’t bleed through the paper (on a previous page, I had mentioned I’d been looking for some) but all they say on them is BVS. We don’t know the manufacturer but we are still trying to find out.

Click here for more tips on how to adapt your home.

Written March 2016.  Reviewed September 2018.

Continue reading “ChaChaChanges”

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.

 

Continue reading “Mind Weeds”

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.

Continue reading “How to Win Friends & Influence People the DBT Way”

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.

Continue reading “I’m Baaacccckkkk!”

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.

Dear Amazon: A Love Letter

This is a love letter to Amazon. I don’t usually develop crushes on mail order houses. Yes, there was a time I was infatuated with the Sears Christmas catalog. However I was very young and it was probably puppy love.

I previously mentioned that Amazon has free e-books (it also has thousands of titles that you can pay for).  You can download an e-book to your tablet and make it just about as large as you wish. This little feature has made it possible for me to read. That’s exciting to me.

Amazon’s eBook reader allows you to enlarge the text as large as you want which has made it possible for me to read.  That’s exciting to me!

Amazon also has an amazing collection of stuff. You can get pictures and descriptions of this stuff on your tablet. Once it’s on your tablet you can again make it as big as you like. You can actually see what you are interested in buying.

Amazon’s amazing collection of stuff includes all sorts of nifty things for people with visual impairment. Sort of one-stop shopping for those of us who don’t see so well anymore and may depend upon others to get around.

Click here to see products that match ‘visually impaired’.

So far I have purchased fashionable sunglasses that don’t ‘leak’ light along the edges and a halogen floor lamp with a magnifying lens and a clip attached to the pole. Since I am name-dropping in this post, I will tell you my lamp is named Ott. Ott works great but occasionally gets a little tipsy. I have his – er, its – base shoved under the night stand. Solves the problem.

I am waiting for neon-colored paper with dark, black lines. Amazon has dozens of types of pens. I have been told there is a black pen that doesn’t bleed through the paper. Hoping to find out the name of those pens soon. Maybe I can order them from Amazon.

Amazon has neon-colored paper with dark, black lines and pens that don’t bleed through the paper.

If you want a little something to share with friends, Amazon even has a 50 pack of magnetic Amsler Grids. You know what I am talking about. Your eye doctor probably gave you one as a consolation prize when he diagnosed you with your first drusen. Maybe he got his Amsler Grids from Amazon!

Made a discovery when I was researching the Amazon site. There is actually a music (rock?) group called The Amsler Grid. Strange. Maybe somebody in the family is an ophthalmologist. Anyway, you can buy their music on Amazon, too.

There really is some amazing stuff out there. If you want something enlarged or to talk to you, they have it. Some of the stuff is bilingual. Habla Espanol? The thermometer does.

From Old Maid cards to multicolored rock salt, it seems to be available in the visually impaired section at Amazon. Amazing.

Amazon has everything from magnetic Amsler Grids to bilingual products to Old Maid cards…and more!

Written March 2016. Reviewed September 2018.

Continue reading “Dear Amazon: A Love Letter”

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.

 

Advice from Scarlett

OK. Right now I have three choices. I could scrub the tub, keep working on the taxes – using the handy dandy CCTV that was loaned to me; I might add – or I can write another post. Sounds like a ‘no-brainer’ to me!

I mentioned a couple of times that I am a group instructor for Dialectic Behavior Therapy (DBT). I mentioned Distress Tolerance Skills that make up the acronym ACCEPTS. So far I have talked about two of those: activities and comparison (AC of ACCEPTS).

Activities are one of my favorite strategies. I like to keep busy. I have already – only partially tongue in cheek – picked out the inscription for my tombstone. What is it, you ask? “I wasn’t done yet!”

On my tombstone: “I wasn’t done yet!”

Enough said on that. Besides activities and comparisons, there are five more ACCEPTS skills: contribute, (opposite-to) emotion, pushing away, thoughts and sensations (the CEPTS). This website is my idea of contribute. Contribute means doing for others. Get out of yourself and make things better for someone else.

Contribute means doing for others and that’s what this website is for me.

OOOPS. Make that three ACCEPTS strategies I have touched upon. Mea culpa (Latin for “my bad”, a phrase I dislike). We talked a little about opposite-to emotion also. Behavior follows emotion but emotion also follows behavior; remember? If you have an emotion you want to get rid of, do a behavior that you would do if feeling the opposite emotion. In other words, if you are sad, dance. If you are fearful, approach.

Behavior follows emotion but emotion follows behavior.

I like to call pushing away the Scarlett O’Hara skill. Do you remember Gone with the Wind? The crops are burning, the slaves are running away and the Yankees are at the door. Prissy comes to Scarlett with one more problem and what is Scarlett’s reply? “I’ll think about that tomorrow.” Note, she did not say she would never handle the problem. She did not say she was going to ignore the problem. She said she would deal with it tomorrow. That is pushing away. Just put it on the shelf until you can deal with it effectively.

It’s OK sometimes to be like Scarlett O’Hara: “I’ll think about that tomorrow.”

Thoughts are distractions that take the whole mind. Work on a puzzle. Learn a new skill. Get into a fast-moving tennis match. Climb on a high ropes course (being 30 feet off the ground and suspended only by a cable does tend to focus one!). The idea is to need to be so mindful of what you are doing there is no room for worry.

I am not crazy about the S in ACCEPTS, sensations, simply because I am not a big one for pain. Not that the sensation has to be pain, just intense. The idea is akin to something like this: you forget you have a killer migraine because you just bloodied your toe kicking the curb. The throbbing of your foot makes you forget your head. Some people suggest a freezing cold shower or holding ice cubes for the sensation. Whatever you do, it has to be intense enough to move your attention away from the distress. Sort of a shock to the system as it were.

So those are the ACCEPTS skills. They are primarily distraction skills for dealing with a situation that cannot be changed….such as this pesky vision loss thing. I hope they are helpful for you. Use them in good health.

The ACCEPTS skills are primarily distraction skills for dealing with a situation that cannot be changed.

Written in March 2016. Reviewed September 2018.

Next: Dear Amazon: A Love Letter

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Tech Talk

On one of my ‘out to lunch’ ladies’ excursions we stopped at our local cellular store. I had been having difficulty with my cell phone. Or perhaps I should say my cell phone was having problems with me. I was unable to read my text. I was calling people I had no intention of calling. It’s amazing how similar some names appear when you really can’t see them well.

I was unable to read my text. I was calling people I had no intention of calling.

Tyler took my friend and me under his wing. He got into the accessibility menu of my telephone and tried to make the font big enough for me to see. He tried to point out all sorts of exciting things that could be done with my Android phone. It’s rather amazing what is on such a small machine.

Tyler wanted to put TalkBack on my phone. I demurred. I had already had it on and had a devil of a time getting it back off again. A sweet young woman in Maine and I spent 10 minutes laughing together. We could not shut the TalkBack lady off! Every time the phone was jostled that accursed voice would tell me the time! Things got so bad I suggested the young lady make a house call to help me out. After all Maine is only 8 hours away and this was an emergency! Thank heavens, I was finally able to quiet the TalkBack lady before we needed to go to these extreme measures.

There are accessibility features on both Android and Apple phones. Some are more trouble than they are worth.

So why am I talking about my interactions with the cell phone people? Well for one reason, these encounters once again prove my point that there are wonderful people in the world. I truly believe most people will help if you give them the opportunity. It makes people feel good to help. This is particularly true if the person they are trying to help maintains a sense of humor. A strong sense of the absurd is helpful, too.

I truly believe most people will help if you give them an opportunity especially if you maintain a sense of humor.

Another reason I have for highlighting these encounters is they gave me an opportunity to use the DBT Comparison Strategy. You remember: that is the Distress Tolerance Skill that basically says “hey, things could be worse. Look at that poor guy!” OK, maybe not those exact words, but you get the point.

“Hey, things could be worse. Look at that poor guy!”

I was thinking about what my father had to help him when he had AMD. He made do with a hand-held magnifying lens. Twenty years ago that was pretty much the state of the art.

Comparatively speaking, now is a great time to be losing your vision. Probably the best time yet in the history of the species. How do you like that for cockeyed optimism?

There is so much more to help people with low vision than the hand-held magnifier of 20 years ago.

I mentioned that I have always been an avid reader. Right now I cannot pick up a book or a magazine and get much out of it. However, I have read The Secret Garden in the last few weeks. How? Amazon has free classics to download on a tablet. I have a zoom feature on my tablet that allowed me to magnify the text. I may have had to turn the page at every paragraph, but I read the book.

I even solved the problem of ‘mystery novel interruptus’ that happened when I had to stop 30 pages shy of the end of a new releases paperback I had. Joy of joys, the Bureau of Blindness and Visual Services tech guy loaned me a CCTV. That is closed-circuit TV. You put a paper or whatever you want to read under the camera and it shows up HUGE on the screen. It will have to go to the office when I go back to work, but right now I can get away with trying it out on some things here at home.

The tech guy loaned me a CCTV which makes things you put under the camera HUGE.

The bottom line for this post? You have technical resources. Get yourself to your friendly neighborhood tech or phone store and ask for help. Devices you already own – a cell phone, a tablet – have accessibility settings. Ask someone to help you use them. We have more resources to help us than any generation before us. Comparably speaking, it’s a pretty good time to lose your sight.

You probably already own a device that has accessibility settings.  Ask someone to help you use them.

Written in March 2016. Reviewed September 2018.

Continue reading “Tech Talk”

Teacher, Teach Thyself

Do I need to even say that I was distraught? I had been struggling at work for days.   I had been lately having panic attacks. Now I knew why but knowing why had not really helped.

One thing I knew was that I had to take a leave of absence from my employment. Tearfully, I sat in the hallway at the ophthalmologist’s office and called my employers. It was not fair to my clients to do a poor job. It was not me to do a poor job. The only option was to hang it up for a while.

It was not me to do a poor job. I had to hang it up for a while.

That weekend I continued with the panic attacks in earnest. I was waking up hyperventilating with my pulse racing. I felt as if I had a rock in the pit of my stomach. This is what dread feels like.

For the past two years, I have had the opportunity to teach the educational components of Dialectical Behavioral Therapy (DBT). Just by chance, the unit I was teaching was Emotional Regulation. If anyone needed emotional regulation at that time it was me. Teacher, teach thyself.

I will go into some of the tenets and strategies more in-depth later on in my postings. Suffice it to say now, I needed to use the first of the PLEASE strategies (PLEASE is an acronym that I’ll explain below) for dealing with Emotional Regulation—the strategy is taking care of physical illness (that’s the P).

The P in PLEASE stands for taking care of physical illness.

I was in my general practitioner’s office that Monday morning. I was totally worked up. I have been up with panic attacks at least three times the night before and I was using over-the-counter sleep medication to get any rest at all. Even worse, my blood pressure was up to 182/ 81. I think this was my personal best!

After listening to my tale of woe – about going blind, taking a leave from work, not being able to drive, and, on top of everything, having my mother-in-law in intensive care – my general practitioner prescribed psychotropic medication to help me deal with my anxiety.

DBT stresses that you have to take care of physical illness in order to deal with emotional distress. I am not a big believer in medication but having a stroke was not going to help the situation.

I accepted that I needed the prescribed medication to help control my panic.

The S in PLEASE is sleep. I wasn’t doing a lot of that but I needed to. I had never given it a lot of thought but, take it from me, losing your vision is exhausting. The emotional stress of losing your vision is exhausting.  That is one thing but just trying to SEE is another. It has been taking me three and four times as long to do basic tasks like reading my mail. I have a reputation for being a high-energy-and-always-on the-go woman. It amazes me that in the last few weeks I have started taking naps.

The S in PLEASE stands for sleep.

The first E in PLEASE is proper eating. One does not eat well when she is in crisis. In fight or flight mode, the digestive process is shut down so the blood can go to the limbs. Before I started on my medication, I had no appetite and when I did eat, it sat undigested.

The problems with being in fight or flight mode were two: first this was not some short-term problem. This crisis was going to last for a while. And two, what was I going to fight? Where was I going to flee? Better to interrupt the process so I could get proper nutrition. After all, every army marches on its stomach and this was going to be a protracted campaign.

The E in PLEASE stands for proper eating.

For you curious sorts who wonder what the A and the second E are (the L is part of the word Physical; I did not forget it), I will inform you. The A is to avoid mood- and mind-altering drugs. That has never been one of my problems, but it might be a problem for some of you. Remember that drugs and alcohol work in the short run but in the long run, your problems are still there and often worse. Escaping with drugs and alcohol is not going to allow you to learn skills to deal with your problems and they certainly will do nothing for your Macular Degeneration. End of lecture.

The A in PLEASE is for avoiding mood- and mind-altering drugs. Not one of my problems but I’m informing you of it.

The E is one of my favorite things in the whole, wide world…exercise! A little autobiographical note here. I have, in at least one aspect, lived my life backward. I was an intellectual in high school and college. Never did any physical exercise that I was not absolutely obliged to do. That changed when I was in my mid-20s and discovered STRESS. The one thing that helped to relax me and let me sleep was exercise and I was born again. It is true there is no greater zealot than a convert. I will witness to you any time you like. I may also witness to you when you don’t like.

The E in PLEASE is for exercise which is one of my favorite things in the whole, wide world.

So, be that as it may, this time of the year, I generally take Zumba, hip hop, yoga and walk. Exercise is an amazing stress reliever and great for calming crazy emotions when you are in crisis. Even though my vision had gone to serious crap, I continued my classes. I have had to. Friends and my exercise have been my lifelines.

When some people hear that I am legally blind in one eye and nearly legally blind in the other, they assume I cannot dance anymore. Not the case at all. Macular Degeneration affects your central vision. If I concentrate on looking at something off-center of the instructor, I can see the moves with my peripheral vision just fine.

Even though my vision had gone to crap, I continued my exercise classes.

People also think I am not able to navigate on a walk. That’s not true either. Keeping my head up and focusing on a spot a bit beyond where I am walking, I can see what is at my feet. The peripheral vision is still there.

When I walk, I can use peripheral vision.

Then there is yoga. Sorry all of you exercise haters, but totally blind people do yoga. ‘My’ yogini is hands-on and will physically correct your alignment, etc. I have worked with another yogini who is about 100 pounds and will literally climb on you! Yoga is great for flexibility, balance, strength and even endurance and can be done by people of all ages. Yeah for yoga!

Totally blind people do yoga. Yeah for yoga!

So, trying to keep myself from being a screaming, crying basket case, I practiced what I was preaching and used the PLEASE skills from Marsha Linehan’s Dialectic Behavioral Therapy.

I also used ABC and Master from DBT. A is accumulate positives; I got out there and had fun. I walked to the park with my yoga instructor and her two daughters. I contacted a friend and went to a blues concert. These may have been just pleasant interludes that don’t do anything to help my eyes but they helped my soul.

The A in ABC means accumulate positives. I got out there and had fun.

B is for building mastery. My job is very visually demanding. I never realized how often I needed to use my eyes. My vision was there and taken for granted. Yesterday I tried to do something I have done thousands of times over the last 38 years. It was a debacle. I cried whatever is left of my eyes out. Tried again today and it was better.

Also today, I started to use Siri on my iPad for my searches. She found something I was wondering about. Minor triumphs matter and I am trying to celebrate them.

The B in ABC means build mastery.  I started to use Siri for my searches.

The C is for cope ahead. Basically, this is a positive imagery technique. What do I imagine? I see me lecturing on Macular Degeneration to Lion’s Clubs and other civic organizations. This is, of course, after I have become the most successful lab rat in the history of Wills Eye Hospital and have written a website that is turned into a best seller for people who are suffering from AMD. There IS life after your macula does a mass extinction worthy of the Jurassic period or whenever the dinosaurs ceased to be.

The C in ABC is for cope ahead which is a positive imagery technique. I imagine myself the most successful lab rat in the history of Wills Eye Hospital.

Do these strategies always work? Hell no. I want to be back at work. I want to drive. I want to read a paperback mystery cover-to-cover in a weekend like I used to. Screaming and crying, frustration and disgust have been part of my life recently and I suspect they will continue to visit. The skills may not be 100% effective but I will take all of the help I can get at this point.

Do these always work? Hell no, but I will take all the help I can get at this point.

Written February 2016. Reviewed September 2018.

Continue reading “Teacher, Teach Thyself”

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

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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