Shopping

My Blindness and Visual Services caseworker stopped in to say “hi”. He remarked a common client had hit a snag in plan A and he was moving him to plan B. Plan B was to be the Carroll Center.

Quite frankly, I had never heard of it. I have only been legally blind for 3 ½ years, guys. I can’t know everything! However, in an attempt to know “everything” I looked it up.

I will give you more on the Carroll Center itself later, but where I jumped into their webpage and where I want to start here is the store. They have CCTVs for rent! Be still my wildly beating heart! The cheaper ones are $25 per month. The more expensive ones are $50.

This is a deal! CCTVs like mine run $3,500. You own it. You repair it. I have had to send it for repairs about three times in three years. Average repair price? Let us say $200. Even renting their most expensive option, the price of one CCTV would cover six years of rental. If it breaks? Send it back and get a new one.

I really like this idea for the budget minded “blind”!

The other thing that caught my interest was a new product the Carroll store is advertising. They are touting this super cool item locator for the price of $26. The system comes with one transmitter and three receivers. You fasten the receivers on to things you are always losing. Keys, my phone and the remote come to mind immediately. The receivers are color-coded and there are three, color-coded buttons on the transmitter. Hit a button and the receiver on an item sounds a tone.

Knowing myself, I think I would want to find a permanent home for my transmitter. Maybe glue it to a table. It is well within the realm of possibilities that I would misplace the transmitter!

Looking at the range of categories of things the Carroll Center has for sale, I would say they pretty much rival Maxi Aids. It is always good to have options.

Now, I will try to pull myself away from shopping and tell you a bit about the Carroll Center. According to their website, the Carroll Center is nearly 90 years old. It started as a Catholic charity but now appears to be non-denominational. Visually impaired? You’re in.

Located in Newton, Massachusetts ( 800-852-3131), the Carroll Center serves all ages and all levels of visual impairment. They advertise services for children all the way up to seniors. For seniors they offer independent living programs such as essential skills, diabetes self-management, orientation and mobility and technology. It appears many of these programs are offered on campus there in Newton. A temporary relocation may be necessary. However, if they are as good as their website suggests, it could be worth it.

Funding? No clue. I know state agencies like BBVS will fund if you have a chance of going back to work. Remember they are part of vocational rehabilitation and their mandate – and most of the budget – is to get people back to work. If you are not a good candidate for employment, funding will have to come from somewhere else.

So, need services? Live in New England? The Carroll Center might be your ticket. And now, if you will excuse me, I am going back to shopping!

Written Sept. 16th, 2019

Next: FIGHT THE GOOD FIGHT

The Time to Prepare is Now!

Recently we had someone ask what to expect when you are expecting…vision loss. (Sorry. Couldn’t resist!) Although I do not have children, I would imagine there are parallels between the two forms of expecting. They can tell you what might happen. They can tell you what typically happens. They cannot tell you what is going to happen. That awaits to be seen.

The truth is, few of us are normal, statistically speaking. I was told my vision loss was going to be a very slow process. Yeah, right. I “lost” my second eye seemingly overnight. I was told rapid progression like that only happens in the very old. I was 62. So much for statistics!

We are all on very individualized journeys. No one person can say her disease will progress in the exact, same way as the next person. That does not, however, mean no one has ever walked that particular section of path before. Someone in the AMD community has been where you are now. Native guides are available.

The person who wrote was just starting the journey. The expectation of something terrible happening – and not knowing when – is very anxiety producing. I am going to take a liberty and assume the writer was feeling that anxiety and worrying when she asked for guidance.

First of all I would suggest you be mindful of your life just as it is.

We cannot rescue the future by worrying about it but that worry can destroy the present. Always remember to focus on what is good in your life. You have sight now. Enjoy it now. Don’t let your AMD rob you of any more than absolutely necessary.

That said, now is the time to prepare.

Do you have a good retinologist you trust? No? Find one. Do you want to get all sorts of “freebies” in technology and services? Don’t quit your job just yet. The agency I got my “toys” from has a mandate to help people stay in the job market. Those who are not working receive a fraction of the funding I received.

Working or not, I would suggest you start contributing to a “war chest” as soon as possible.

Disability is expensive! Even if you get services there will be things that do not get reimbursed. If you don’t get services, things are much worse.

Check local resources. The day is coming you will not be able to drive. How do you get places? That was my big one but there are others.

Get used to asking for help and accepting it graciously.

Don’t be afraid to tell people you are visually impaired. Admitting weakness is a sign of strength. People like to help, but be careful not to give the “honor” of helping to one or two people. Spread the wealth.

Look for opportunities to participate in the helping cycle as well.

What goes around truly does come around. Just because you are visually impaired does not mean you can’t be of benefit to others. People still need what you have to offer.

Those are the thoughts that came off the top of my head. Comments? Anyone have any other thoughts for the “new kid”? Hope we helped!

Written January 7th, 2019

Next: IN THE MOMENT

Sue on Assignment – Special Topics

When Sue announced that she was going to take a break from writing journal pages, she asked if anyone had any topics that they’d like her to research. It didn’t take long for ME to find several projects for her. I’ve also gotten requests from readers. If you have a topic, please post it in the comments or send it to me at light2sight5153@gmail.com. I can’t guarantee that she’ll take them all but we can try!

AREDS2 Study & Geographic Atrophy (2 pages)

Money for Assistive Technology (2 pages)

Non-genetic Causes of Macular Degeneration (2 pages)

Got Milk? Research on Calcified Eye Spots

How to Conduct an Experiment for Yourself

How She Sees What She Sees

Altitude and AMD (2 pages)

Be My Eyes

Coping Fatigue (3 pages; Coping Fatigue, It’s Not Your Fault, and Exhausted by Life?)

Mitochondria – Part 1 (2 pages)

Photobiomodulation

Why Read My Pages? My Answer

More to come!

Have an idea for a page for Sue? Let me know at light2sight5153@gmail.com

Catch-Up Days

I have this long, holiday weekend earmarked for a lot of things. I have gotten a few done. The pool is open and semi blue. I have gotten some drown-proofing lessons for the puppygirls accomplished. While Etta has some form issues, Maggie swims like a dogfish. She attacks the water with gusto. Bonsai! Puppy flop! Splash!

Part of our obligation for our ‘free’ conference was to do our homework. This week I ‘read’ chapter 2 of the text with my free version of NaturalReader. Some of the pronunciations are way off but it keeps it entertaining. I did need to follow along in the book. If you need to read higher level text and cannot follow along visually, the free version may try your ‘pay tee aunts’. [You can read Sue’s review of NaturalReader compared to KNFB Reader starting on her page Battle of the Apps: Part 2.]

NaturalReader does advertise a ‘professional’ version for $99. I just am not sure what profession! [If you want to read more about this app & do a search, you’ll find it as NaturalReader ‘all one word’ and Natural Reader ‘space between the words’. Usually, Natural Reader ‘space between the words’ refers to a text-to-speech reader for Windows 10. ]

Since I will be needing it in about a month, I filled in the forms for my Medicare supplemental program through the retirement system. I am still researching what to do about health insurance for my husband. The local hospital system wants $1100 a month for their ‘good’ plan. My retirement system would cover a spouse for $1000 a month. However, the lovely lady at the retirement system’s insurance office suggested COBRA. I could get 18 months of insurance for my husband for about $800 a month. Maybe enough time for some sort of miracle to occur in American health insurance? That would be nice.

COBRA will cover you if your insurance plan was through a company with 20 or more employees and if you were covered the day before the qualifying event – such as taking disability retirement because of vision loss or pretty much any other reason you lost your health care through an employer. Termination for “gross misconduct” is not included so if you want cheaper health insurance, behave yourself!

I was told my soon-to-be-former employer is obligated to send me information immediately upon my retirement. There can be no lapse in coverage so the few days it may take to get him signed up will be covered. The plan will be the one the school districts offers and we are supposed to be able to get it for 18 months.

Savings as compared to the hospital insurance plan? Approximately $5,400.

Just passing on that little bit of information. If you have the health insurance and have been worried about how your spouse will be covered, COBRA is not necessarily a great option but it may be better than the alternatives.

Also, check the Marketplace. If you make less than $64,900, there are discounts available there. Find an ‘insurance navigator’ to help.

Not exactly about age related macular degeneration but I would say health insurance is a problem that can keep us awake at night, especially when we need to leave a job unexpectedly. Hope this info will give you another avenue of inquiry.

That is it for now. I have an evaluation report to write. Let’s hear it for ‘catch-up’ days!

Written May 26th, 2018

Next: Please Be Cautious

Home

News Briefs

Dreary Saturday. It is cold and rainy. The chill gets into my very core. I would rather have a foot of snow than this stuff but then no one ever asks me. Also, a lot of people really don’t appreciate my preference for snow! Obviously not skiers.

All afternoon I have been curled up on the couch with my iPad. Decadent. Really don’t like to do this but I wanted to finish a BARD book I had started and I was working on level 1005 on Panda Pop. Make that STILL working on level 1005. Not going so well.

Anyway, I do need to mend my wanton ways…later.

My email is full of news briefs from eye sites. ? There is a ton of information out there. One article healio.com sent me was Specific gene variants play role in response to Anti-VEGF treatment. Once more it appears our genes are our destiny, at least for now.

We all know medicine is headed towards ‘personalization’. There is evidence for a vitamin supplement/genotype interaction and now it appears there may be an interaction between your ‘eye shots’ and your genotype. A study in Spain grouped together good responders and poor responders to ranibizumab (Lucentis). Then they did genetic testing on the two groups. Guess what. Genetically these two groups were significantly different. The genes that responded well were thought to be CFB, VEGFA and VEGFR1. Poor respondents had certain variants of SERPINF1 and CFH.

Among the non-genetic markers? Smoking and high blood pressure were both associated with poor outcomes.

In coming years it should be interesting to see what is going to happen between genetic testing and privacy rights. Also with genetic testing and attempts to withhold services. Will you have to pay more for insurance if you have ‘bad’ genes? Thinking I may be glad if I miss THAT aspect of our brave new world.

Healio.com also reported the Argus II was recently implanted in the eye of a man with retinitis pigmentosa in Singapore. Remember RP people are generally ‘big B’ blind. This thing is not for us who have comparatively good vision.

And for our friends with RP here in the States, Medicare will now pay for the Argus II in 28 states, two territories and DC. Recognition of such innovations as ‘medically necessary’ is paving the way for other innovations that will be coming. Read, accepting the Argus II for RP patients will ‘soften up’ policy makers so they are more likely to pay for things we as AMD patients will be able to use. I find that a lovely thought. (So I am manipulative, conniving and self-centered. Wanna make something of it?)

Pretty much it for now. I have not done much today and I am feeling like a bit of a waste of space. Need to accomplish something. Maybe just one more shot at that level in Panda Pop? ?

Written February 24th, 2018 Continue reading “News Briefs”

I Am Bored

Saturday evening. I am bored. I do not want to do a cursed thing that is available to me. Games? No. TV? No. Cleaning? Bite your tongue!

I guess that means I write. I have no clue what I am going to write about. We will be surprised (shocked, appalled, bored to tears) together.

A very long time ago I wrote how it is possible to get newspapers and magazines read to you over the phone. It is called the NFB (National Federation of the Blind) Newsline. If you qualify for BARD, you will qualify for Newsline.

Anyway, according to a recent email, Newsline is expanding their offerings. You can now have the computer voice read you Ebony, Science Daily, Scientific America online and Hollywood Reporter. Definitely a varied group of new offerings.

Assuming Lin has already put the link in but if not, search Newsline in the archives. Info for signing up is in the old page.

Looking at more of my mail, specifically things from Healio, I see we are getting closer to being cyborgs. They have approved human testing on the Orion Cortical Implant. In fact the first patient received the device last month (massdevice.com article). The implant in the brain is supposed to pick up signals from a miniature TV camera mounted on glasses. The feed is wireless. Gets my sick little brain wondering what else it could possibly pick up. It might be a bit distressing to pick up random signals. Hmmmmm….

That is not for us, though. The invention that may turn us AMD folks into cyborgs is called The Prima implant. I also mentioned this some time ago. Now they have gotten approval to do feasibility studies on people who have vision loss from dry AMD.

The Prima sends signals from a glasses camera to an implant that is connected to the optic nerve. It has 378 electrodes. That sounds like a lot but I have the feeling the vision they will have with that will be pretty pixely. Oh well, it is a start.

You folks who use aflibercept (Eylea) to hold your wet AMD in check may want to check out that manufacturer as a possible investment opportunity. Regeneron posted nearly $1.5 billion income for 2017. Whoa, baby! That is a lot of eye shots.

Another one of my pet ideas again: keep in mind we have power. Why? Because we are the ones who are making it possible for companies to make money like that.

And another thing, Healio reported Regeneron posted a QUARTERLY costs of research and development at…ready?…$528 million. For the year, it was over $2 billion.

This is one company, people! Imagine how much money all of the companies in the world are throwing at finding solutions to our problems. How can you say nothing is being done? How can you say it is hopeless? There is no way they would be spending money like that on a lost cause. Bad economics, don’t ya know?

It is now 10 pm and I can go to bed. Don’t have to worry about entertaining myself any longer. Thanks for helping me get ‘unbored’! Night!☺

Written February 11th, 2018 Continue reading “I Am Bored”

Shop, Shop Around

Give blood…raise puppies! Quite honestly, I look like I have run through a brier patch. Sharp, little teeth and delicate, ‘old’ (whom are you calling old?!?) skin are a bloody nasty combination…literally. One of the things that bothers me about getting older is tissue paper-thin skin and always bleeding somewhere on my body. Need to wrap me in bubble wrap!

And while we are on the topic of ‘old’, I wanted to mention I went to the aging office for ‘the talk’. That was the Medicare talk.

It was not as horrible or confusing as I thought it was going to be. The adviser suggested I apply for Medicare Part A and Part B in April, four months before I turn 65. Since I am in the retirement system for school employees in the state, she suggested I forego the rest of the plans and go with the ones the retirement system offers. Since I qualify, I can get an extra $100 per month by buying the plans from them. Let’s just say she did not have to suggest it twice.

Before buying a supplemental or advantage plan from another provider, it might be wise to check with your employer or union. They might have something you are not now aware of. Obviously compare the plans offered to two or three of the other plans available. The one we looked at for me offered the same benefits the one we had for Daddy did. Both my father and I were very pleased with that one. It was only that $100 a month savings that convinced me not to go with that company. (So, apparently I really can be bought!) [Lin/Linda here: I thought that Medicare had a page to search but I can’t find it. Here’s a page where you can enter your zip code and you will get the supplemental or advantage plans that you would qualify for. It’s a non-government website & sponsored be eHealth. Click here for that.]

Remember: just because you have become an old man now, there are still some things you don’t understand now…you’d better “shop, shop around!” (With apologies to Smokey Robinson).

And if you are really not sure what you are doing – like yours ever lovin’ truly – call the aging office in your area and say “Help! I need somebody! Not just anybody” but someone who knows the Medicare system. They should be able to help. (Apologies Paul and John wherever you may be.)

Enough of that! Can you tell it is Friday after a full week and I am more than a little out of it? Yep. I get a little slap happy, but somebody’s gotta do it. Let all of you refined people feel superior! ?{curse it! I wanted to put a goofy smiley face there but my emoticons aren’t emoting. Lin, if you please!}

The nice lady at the aging office gave me a couple of publications. I got “Your Medicare Benefits” and “Your Guide to Medicare’s Preventive Services”. Am I going to read them? Do you want me to lie to you? I have a good idea what I have to do, but if I forget something, they can be good resources. [You can get those documents and more on the Medicare website here.]

So there you have it. My first foray into services for the ‘elderly’. We will ignore the fact I don’t feel a day over 40.

And, does this page have a thing to do with Age-Related macular Degeneration? Ah, nope.

“Catch ya on the flip-flop! 10/4 good buddy!” [Sue says that comes from the song Convoy! ::smile::]

Written January 26th, 2018

Continue reading “Shop, Shop Around”

It’s That Time – Tax Time – Again!

Well, the first bit of good news is this snow is good enough to cross country ski. The second bit is I remember how! I got my first, 45 minute session in this afternoon. Go team!

Now the bad news is, if we are having this weather now, Spring cannot be far away. Spring in the States means tax time. Groan!

The last two years we did pages on taxes. This year I want to use a TurboTax page I found as a reference and cue you in to some of the rules and regulations not to mention the changes we can expect. [Lin/Linda: the 2017 tax page was Tax Time.]

The IRS defines blind as 20 degrees or less field of vision or 20/200 or less acuity in the better eye with best correction. If you qualify as blind by that definition, congratulation, you get deductions! If you are blind by that definition and also 65 or older, yippee, you hit the daily double! According to the IRS people over 65 who file singly get to deduct an extra $1550. Those filing jointly deduct $1250 apiece. For the blind, the deduction is $1550 if filing singly or $1250 if filing jointly. If you are both blind you and your spouse get to deduct $2500.

We went over medical deductions last time…and maybe even the time before. The rule is basically anything that you spend to prevent, diagnose or treat illness is a medical deduction. You might want to ask your accountant about eye vitamins. You would probably need a doctor’s note. That is what I am told to get every time I suggest my gym membership should be a deduction! Go ahead. Won’t hurt to try.

There is something called impairment-related work expenses. This would be something like the bill to fix my CCTV. We can claim those.

All this will probably (or not!) change next year with the tax reform proposals they may (or may not) pass. Make sure you can get the information or can at least latch on to someone else who has it. That will be something to fuss over next year. Right now, don’t worry about it.

Also found a 2015 article from the American Federation of the Blind (AFB). This article (Tax Guide) makes some suggestions for doing your taxes on your own. Their first step is to get organized, something that has always been my nemesis. AFB suggests hanging files with large, bold labels. I would suggest color coding as well.

AFB also suggested getting all statements in large print and using a magnifier like a CCTV. Not sure how some of you could get a hand on one of those. I know there is one available to the public in our town library.

Only a page and a half into the article, the AFB page takes a pretty abrupt turn into how to ask for help doing your taxes. (Now they are making sense!) They suggest AARP and the American Council of the Blind. AFB warns against using online tax preparation programs because of the navigation problems that can occur when you are using a magnify program.

So, personally, I would say we are back to having a competent accountant. If you cannot afford an accountant, the government endorses Volunteer Income Tax Assistance (VITA) as well as Tax Counseling for the Elderly( TCE) as organizations that can be of help.

Good luck. Continue reading “It’s That Time – Tax Time – Again!”

Free Stuff

Back from the first local vision seminar this morning and the travel agency this afternoon. My husband wants to take a vacation before we get a puppy.

After the puppy, we will have to tighten the belt again. My eyes have always been bigger than my belly!

Of course, there are sources of free stuff that can hold me over. I have talked a lot about free, audiobooks from BARD. YouTube has free movies and music if you want to search. I know many of you ‘got’ that but some of our older, less tech savvy friends might not be aware. Right now I am listening to Rag ‘n’ Bone Man’s “Human”. It has been my favorite song for about two months. “It’s got a good beat and it is easy to dance to.”

Or, you could dig in the attic and get into the ‘archives’. Next up is Michael Jackson with “Billie Jean”. I would suspect lots of you have a pile of 45s or 78s somewhere. A couple of years back I got an inexpensive turntable to play mine. Cheap, nostalgic entertainment.

Many years back I got into rebating and free stuff. I have not done it in a while but now in the age of online opportunities, it looks as if you can score all sorts of fun stuff…and no envelopes or stamps required.

Again, I have not used any of these and I cannot actually recommend them, but it looks like freeflys.com has all sorts of money off coupons you can print out. And if you like to get things in the mail, they also offer free samples.

Refundsweepers.com offers all sorts of money-off coupons as well. I gave them my email address and they did send me an email saying I had a soup coupon. I had trouble printing it out but maybe you will have better luck. I will let you know if I get inundated with spam.

And as I am looking for free stuff I just found a possible option for our friends in Massachusetts. Anyone ever hear of Maximize Assistive Technology in Consumer’s Hands? Massachusetts MATCH has a website and a phone number (877-508-3974) and a Facebook group. Not sure what the requirements are exactly. I looked at their offerings of ‘pre-owned’ mobility and ‘sick room’ equipment. Nothing for vision that I saw but I think some of us may need a bath chair. Not to mention, if you have assistive equipment you don’t need, they say they will get it into needy hands for you. If you check it out and they are legit, let us know. I did look at a few pieces of equipment and there were no prices.

For the opposite coast, Berkeley,CA, the Center for Accessible Technology has free classes for seniors in accessing everything from email to online dating sites. They also advertise iPads for loan. That number is 510-841-3224.

Just throwing these out as possible sources of bargains and free stuff. Penny pinching options for us all. Keep spending money like this and I just might need them!

written September 23rd, 2017 Continue reading “Free Stuff”

Preparation: Start Now!

Greetings from a rainy Labor Day weekend. Supposedly this rain is a Harvey leftover. We had a ‘little flood’ here six years ago right about this time of the year. What a mess! Hubby and I did not get much of that; we are on a hill. However, I went into town to do some shoveling and needs surveys….Never got so sick in my entire life. Flood mud crud is nasty business, folks. If you are helping, wear masks and goggles. Take any innoculations they offer. I was sick literally for weeks.? Once more, try to profit from my stupidity!

Of course, the good news is what doesn’t kill you can make you stronger. Except for the food poisoning I don’t think I have been sick since! ?

Anyway, in the States Labor Day is the unofficial official end of Summer. That means today before the rain we were preparing for cool weather. The houseplants came in from their summer home on the deck. I picked the tomatoes that had not yet ripened for my friend’s mother. She is supposed to make a mean green tomatoes pie. Ran into a little snag in trying to close the pool, but that will get done before the leaves start to fall.

Preparation. We prepare for Fall. We prepare for holidays. How many of us prepare for vision loss?

Many of you are in the early stages of this disease. I truly believe research will soon make it possible to slow or even arrest the progress of AMD. I believe you could easily be spared the worst of AMD. But just the same, preparation is a good thing.

Harley Thomas is blind. Last February he wrote a piece in his blog. The title was, of course, How to Prepare When you Are Going Blind. Harley (he looks like a nice guy so I will refer to him by his first name) says preparation can give you a sense of control. He agreed with other people I have read in saying starting now to learn skills will make things much easier later.

Harley would approve of us all learning about our disease. He would also approve of how we are coming together for support. He talks about ADA and telling your employer about your sight loss.

There are lots of references and links on Harley’s page. One of them is entitled “What to Tell Your Employer When You Are Loosing Your Sight”. I have not read it yet but somehow I don’t think it says to call work in hysterics directly from the doctor’s office like I did!

Harley suggests habilitation/rehabilitation and independent living courses. He also talks about getting your house organized. All good ideas with links to how to posts. [Lin/Linda: if you’re curious, there’s a difference between habilitation & rehabilitation.]

What Harley does not talk about are transportation and finances. To me, these are huge! I believe trying to get services and benefits from the government can be one of the most convoluted and frustrating things you have ever done. It literally took a couple of months to line up transportation. I had straightened our financial house several years ago when I got an inheritance. If I hadn’t, the income loss could have been problematic. Looking into the basics of getting around and doing what you can to get – and keep – your finances in order is crucial. Start now. You will be glad you did.

Written September 3rd, 2017 Continue reading “Preparation: Start Now!”

Whoopsie!

Whoopsie. Errata alert. I discovered the NaturalReader does NOT support Kindle like I thought [see previous page Jabbering]. This is because Kindle books are DRM (Digital Rights Management) books. Also iBooks, Nook and Adobe Overdrive. DRM is related to copyright laws. There are ways to get around the software ‘locks’ and you can easily find these offered on the web. However, they are illegal and we try not to encourage criminal behavior. Rumor has it scofflaws use something called Calibre. And that is what I know about that subject. ? [Lin/Linda here: I had to look up ‘scofflaws’ in the last sentence. It is “a person who flouts the law, especially by failing to comply with a law that is difficult to enforce effectively.”]

I looked at Gutenberg.org and found titles like “The Paper Currency of England Dispassionately Considered”. Whoa.

Numismatists study coins AND paper money (thought it was just coins). Hopefully they would be enticed by that title. Me? Not so much.

So far on a cyber search of non-DRM ebook sources I find nuthin’. So for right now for ebooks on NaturalReader I guess it is Gutenberg.org or nothing. Remember if you are legally blind like moi, you can get BARD. I am just finishing listening to John Sandford’s Golden Prey. Love Lucas Davenport. Also, ebooks will zoom on a tablet so those with less of a vision loss can go that route. Sorry I fed you bum info.

And in other news, I passed the 100 mile mark on my bike today! This summer I have been using it for transportation. I realize for many of you your cycling days may be behind you; however, for those of you who can still ride and live in an area conducive to bike travel, it can be an option. Traveling at 7 miles an hour it is easier not to run into things than when you are traveling at 70 mph.

Of course, I almost had my first accident today. I was riding in the street parallel to some guy on a Jazzy (electric wheelchair) on the sidewalk. He decided he wanted to go across the street, swerved right and nearly took me out!

Maybe I should get a bell for my bike…or one of those horns with the red bulb. Anyway, glad I was able to avoid him. How do you explain being taken out by a Jazzy? It would be humiliating.

And because I am again prattling about things totally unrelated and of no great importance – and because I need about 150 more words! – I wanted to ask if you folks knew we are creating great investment opportunities? OK, maybe not us personally but I found a BusinessWire report on Global Age-Related Macular Degeneration Partnering Deals. They are hyping advice about buying into research and development of AMD treatments! They think people can make buckets of money off of us!

Now, some people may think it is rather opportunistic of these potential investors, but I think it’s great. The only way they can make said buckets of money is to invest in treatment we will buy. That generally means something that will work. If research is stirring up enough interest for people to be buying AMD specific investment advice, things have to be happening!

And that is the end of this page? Continue reading “Whoopsie!”

A Dozen Years of Progress

Here I am again, trying to offer a balanced look at AMD. Rumor has it the wet folks are wondering when they will get consistent coverage of their issues. Dunno.

When are we getting someone with wet AMD to write for us? You write. We publish. Until then, I can throw a few pages together, but my problem is dry. I cannot even begin to speak to the subject as well as someone with wet could. Consider it.

Found an article from BrightFocus Foundation. Title: How Effective are Age-Related Macular Degeneration Treatment? At the risk of sounding like a broken record, I like how the author points out there were very few treatments a scant 12 years ago. As the baby boomers we continue to drive many, many things in the world. Pig through the python; yes? We are now losing our vision and unless something is done, we are going to break the bank with our care needs. People respond to numbers, large numbers.

Which brings me to, did you know there are something like 200,000 new cases of CNV (wet AMD) every year in the United States alone? That is from CATT at 2 years: the facts.

I got to the CATT study because the BrightFocus article (above) referred to it. It is a 2010 study that seems to remain pertinent today. It was mentioned with ANCHOR, MARINA and HORIZON. These are all efficacy studies for your ‘shots’.

In the ANCHOR and MARINA studies Lucentis was proven to improve vision several lines on the chart. This was in the short term. The HORIZON and CATT studies were longer term and in these some gains were lost.

The VIEW trials suggested Eylea every eight weeks is superior to Lucentis every four weeks. However, more study is needed.

Avastin is a cancer drug. Injected into the body, it inhibits growth of new blood vessels in tumors. It tries to starve those, nasty things. Off-label use of Avastin for CNV has shown similar efficacy to Lucentis.

A big selling point for Avastin is cost. The article suggests it is $50 a shot. The others are thirty to forty times that much! Insurance problems? Talk to your retinologist about Avastin.

The BrightFocus article ends with good news. Did I mention I like this guy’s attitude? He reported a more recent CATT finding was 50% of patients retained 20/40 vision in the treated eye five years after the start of anti-VEGF treatments. Only 20% had 20/200 or worse! What do you think of those apples?

Again, these gains are in little more than a decade. How can you doubt more great things are coming and coming fast?

OK. How’d I do?

written July 1st, 2017

Continue reading “A Dozen Years of Progress”

Quack, Quack

Caveat emptor! That is Latin for “hold on to your wallet!” (Actually it means “let the buyer beware!” but close enough.)

As of late we have been hearing about ‘medical professionals’ offering services that sound pretty much like quackery.

You know the old saying: if it walks like a duck and quacks like a duck, and looks like a duck, it is probably a duck. The problem is some of us don’t know what one of those old ‘quackers’ looks like.

Ergo, I am offering a short tutorial on identifying the ‘ducks’ among us (Great. Another ‘ornithology’ lesson ?).

You can find dozens – literally dozens; makes me kind of sad about the ethics level in America – of posts talking about how to spot a quack. Skeptical OB gives a shortlist of six red flags that can be applied across the disciplines. They report quacks make claims of secret knowledge and giant conspiracies. They baffle with bullshit and claim they are so revolutionary they threaten the medical establishment. Claiming toxins in everything is a biggie. Also flattery. You have heard it. How you are doing such a great thing and blazing the path for others? Yeah, that one.

There are also posts talking about how to spot quacks in more specific areas. Quackwatch.com has a list of 26 ways to spot vitamin pushers.

Some financial ways of identifying quacks are listed by USA Today. Reputable doctors do not ask for deposits or cash up front. Potential quacks offer the most amazing – and expensive! – treatment first and don’t even bother attempting other treatments. Not covered by insurance? Be suspicious and ask lots of questions.

To support some of the points in the Skeptical OB post, USA Today points out science is pretty much a team sport and very few people make discoveries all by themselves in their garages anymore. Things are just too complicated and too expensive these days.

The idea of the dashing, undaunted, brilliant rogue doing his research alone at night (I just flashed on Dr. Frankenstein here; sorry.) is romantic but obsolete.

Testimonials are great at funerals and ‘roasts’ but anyone who has had to write a recommendation knows such things are easily slanted and misinterpreted. I am stopping short of accusing anyone of outright lies or psychotic delusions, but if all the treatment has to back it is testimonials? Put away the credit card and leave.

The problem – or one of the problems, I should say – with quacks is they go after the vulnerable. Sleazy sons of sea crooks. Are some of us desperate? Absolutely. We don’t want to believe medicine is not yet in a position to help us.

USA Today suggested one of the things I have been harping about now for months: sign up for a clinical trial. Even though ‘mine’ have been stalled for months and driving me insane, mainstream research is where the action – and the hope – is.

Minimally go for a second opinion before you commit to any treatment, but especially if it looks a little murky based on some of the red flags we have talked about. If your treatment provider tries to discourage you, he might be hiding something (like he’s a quack, for example!)

Thus endeth the lesson on ‘foul’ identification?

Be safe out there.

written April 14th, 2017

Continue reading “Quack, Quack”

Full of Lint

Earlier in the week I offered a housekeeping tip. I actually have another one! Make sure the vent for your dryer has been cleaned.

The clothes washer has not been working properly, won’t spin, but even taking that into account, the dryer seemed to be taking forever. The one thing I know we can do for ourselves is clean the vent hose so I asked my husband to do it.

It was sort of full of lint. We all know that that is another invitation for a fire, not to mention a lot of wasted electricity and money from long drying times. Time flies when you are older and it just may be your dryer vent hose has not been cleaned within the recommended year (even though you could swear you did it last week!).

Do me – and yourself – a favor and clean the vent hose. Fires are bad for anyone but a fire and low vision could be nasty.

That, however, does not solve the problem of the washer that will not spin. That will require a repairman. Hopefully it won’t require a new washer.

Which got me to thinking: is there a way to get free appliance repair for those who are low vision or blind? Did not find that but – glory be! – I found a possible way to get free replacement appliances!

The Low Income Energy Assistance Program (LIHEAP) is allowed to replace your appliances. This is not guaranteed because all of the money comes out of the same pot and is often spent on things like home heating, but if you need an energy efficient refrigerator or washer, it would not hurt to inquire.

Qualifications are pretty much what you would expect. You can not earn more than 150% of the poverty level or more than 60% of your state’s median income level. In other words, a pretty low income is required.

Other than replace energy-hog appliances, LIHEAP helps people with energy bills and weatherization. The whole idea is to reduce the amount of income that is spent on energy in the home.

Now, obviously I would not qualify. I will have to get my washer repaired on my own dime. However, those of you who are living on limited incomes may wish to call 1-866-674-6327 and inquire about the program. This number belongs to the National Energy Assistance Referral project and it is manned from 7 a.m. until 5 p.m. mountain time. That would be 9 to 7 eastern time, 8 to 6 central and 6 to 4 Pacific time. Any other time zone? You are on your own.

Hopefully that nugget of information will give you one other possible resource for getting through this AMD mess and all the not so little messes that may have come along with it. Disabled and “of a certain age” too frequently go along with low income in America. Anything that can make the financial struggle a little easier can be a good thing.

Me? I call your friendly, neighborhood appliance repairman first thing Monday. I have laundry to do. Continue reading “Full of Lint”

Tax Time

In real time March is only five days away. Wow. Winter is going fast. It has also been freakishly mild. I suspect March will come in like a lamb meaning it should go out like a lion. Maybe that will mean at least one more opportunity to cross country ski at the park. Maybe not. Probably just wind and cold rain. Phooey.

March 7th is going to be another first year milestone. March 7, 2016 was my first day back at school. Soon I will have been an employed, low vision person for a whole year! This time last year I was not sure it was possible.

Sometimes we just have to practice what we preach. I told a little guy today I never get angry at my students for getting a wrong answer, but I could promise him I would be angry if he did not try. No matter what the outcome, we all have to try. That includes the big people.

The beginning of March also tells me I need to get it in gear and get my stuff together for the accountant. It’s tax time!

The United States and many other countries – I just found information on Ireland; perfect for the month of St. Patrick’s Day – have special tax breaks for the blind. In the USA you qualify if you have a field of vision of 20 degrees or less or if you have 20/200 vision or less with best correction. In Ireland people qualify if they have 6/60 central visual acuity in the better eye with best correction or a visual field of 20 degrees of arc or less. They sound similar but you should check and see what the rules are where you are.

Remember the American law allows you to deduct what you spend to prevent, diagnose or treat an illness or medical condition. That includes costs related to your blindness or visual impairment. Disability associated items include all sorts of things. For example, they include feeding and grooming your guide dog! Same in Ireland as long as you have a certificate from the Irish Guide Dog Association.

Hold on to your certificate once you claim because the Irish tax people can ask for it any time over the following six years. Also in Ireland you can get the VAT (value added tax) refunded on purchases of aids and appliances. Hold on to those receipts, too.

In Tax Tips for the Blind, the TurboTax people say that even if you do not make enough that you are required to file, you can get a ‘hefty refund’ in the form of earned income tax credits. Do I know enough to explain that? Absolutely not.

Which is the reason that again this year we want to remind you there are qualified professions – or soon to be professionals – available to help you with your taxes. The InFernal Revenue System (auto correct is no fun! I tried three times to write ‘infernal’ and it would not let me! I kept getting ‘internal’ ::grin::) offers links to Volunteer Income Tax Assistance and Tax Counseling for the Elderly.

Ireland? Wish I could have found something for you but my search engine was not cooperative. I would suspect that calling the local tax office would get you some info. Let us know. Maybe we can use the information. You do know, I assume, that here in America, on St. Patrick’s Day, EVERYONE is Irish! Just don’t ask us to file there, too!

Lin/Linda here: The RNIB in the UK offers free tax advice, click here for more information. I don’t know if this applies to Ireland or not. There is a branch of the RNIB for Northern Ireland, click here for more information. I don’t know if they have similar services but you could check.

Continue reading “Tax Time”

Thank You For Your Service

Happy Sunday. I am sore. I overdid. I not only did my usual Saturday routine but I went to the staff party for the elementary teachers and danced for about two hours. Maybe three? Anyway, while I lived to tell the tale, I know I exerted myself. (These are trained professionals. Do not try this at home ?.)

The party was at the local VFW (Veterans of Foreign Wars), which got me to thinking about our veterans. No matter what you may have thought of the VietNam conflict, the guys and gals who were in that war did their duty and deserve respect. They are all also of an age to be experiencing vision problems, including AMD. What does the Veteran’s Administration have for the visually impaired?

To start on a general note, the United States Veterans’ Administration (VA) offers a program called Aid and Assistance for veterans and their spouses who are over 65. The veteran must be eligible for a pension although I am not sure what that means exactly.

The program is to help pay part of the cost of having someone come in and help with activities of daily living. ADLs are things like eating, dressing and bathing.

Daddy served in World War II and was eligible for this benefit. Since we were trying to keep him in his home as long as possible, I had gotten him a caregiver to come in morning and evening. I also had him enrolled in ‘Daddy Daycare’ and transportation.

It was a real bear to get the approval – took about 14 months! – and we had to prepay everything and submit the bills. However, when all was said and done, we ended up with between $30,000 and $40,000 being reimbursed by the government. That money literally saved the house from having a lien put on it.

That is the general help available to everyone who qualifies. There are also all sorts of specialized services for blind and visually impaired vets.

According to The VA Office of Research and Development, the VA became involved with blindness and visual impairment in 1944. I think I mentioned before how the government realized it had an obligation to the war blind. Since that time the United States has started the VA’s Office of Blind Rehabilitation Services, which operates 13, Blindness Rehabilitation Centers for the ‘blind’ and also the Visual Impairment Center to Optimize Remaining Sight. That one is for veterans who are partially sighted.

I have had direct experience with the Aid and Assistance program but I have not had any experience with the vision programs the VA offers. Just mentioning them for anyone who might qualify and be interested in hassling with all of the nonsense that comes with dealing with the government ! ? Contact your local VA for assistance in learning more.

For those of you in the UK, you can contact Blind Veterans UK at 12-14 Harcourt Street, London, United Kingdom, @blindveteransuk, phone +44 20 7723 5021.

Continue reading “Thank You For Your Service”

Update: Where can I get financial help for the shots I need for my wet AMD?

One of the members of our Facebook group shared with us information about a Patience Assistance Network (PAN) Foundation (US) which has helped her to pay for shots when her insurance would not pay. PAN’s purpose is to “help under-insured people with life-threatening, chronic and rare diseases get the medications and treatment they need by paying for their out-of-pocket costs and advocating for improved access and affordability.” To qualify, you must be within their income guidelines and the medication must be on their list. This program applies to more than just medications related to vision.

Click here to find out more about the PAN Foundation. Their available funding fluctuations so you may have to check with them regularly.

Click here for a list of other Patient Support organizations including from the companies who make Lucentis and Avastin.

Click here for the company who makes Eylea.

Click here for a company in the US called GoodDays.

Click here for a list for assistance with the medications as well as with other expenses.

In the US, you may also qualify for Social Security Disability which would give you a monthly income and Medicare benefits. Click here for that information.

Please contact me directly (light2sight5153@gmail.com) or leave a comment on this page if:

you live in the US and have experience with any of these organizations
you live outside the US and know of any similar organizations in your country

updated 12/13/2016

Growing Younger

I would imagine many of you living in the States belong to AARP. I will put a plug in for them here. Membership is cheap and you can get that back on their discount program very easily making the magazine and the good information there pretty much free. After my father retired we got one of their medical insurance programs and it worked out nicely for him. Not free, of course, but it was a good deal. Click here for their Membership Guide.

Again, we get no monies from anything we talk up but we would like to! We do have scruples and won’t say nice things about anything we do not personally know. Occasionally I will include what I have heard but hearsay is marked as hearsay.

So much for the disclaimer. AARP magazine for October/November 2016 has an article about growing younger. It is based on a book by Chris Crowley and Henry Lodge. The article hits the basics. You know the fitness four (strength, endurance, balance and flexibility), healthy eating, social connectedness and meaning in life, although they do not use the same words. Looking through their section on meaning, they call it nurturing your inner life, I noticed #5 which said “get over yourself”. Oh, my. [Lin/Linda here: I can’t connect to the article, you have to be a member to access the magazine. For a look at what is in this issue, click here.]

The point they make is you won’t be the hotshot_______ when you retire. That identity goes away. You have to be prepared to lose part of your self. Crap.

I have been in my profession for 39 years. Who am I? I am a psychologist. The idea of giving that up voluntarily is one thing but the idea of being forced to give it up is almost traumatic. OK. Maybe it is traumatic. No matter what words you use, it ain’t good. Maybe I should start looking at some stuff about retirement. Maybe get a little more comfortable with the idea?

US News had an article that talked about 12 ways to survive an early retirement. It is a more practical article but does have some information that might help emotional coping as well. I want to do this article for this page and go over another article on coping for another page. Hope that’s OK.

The article said 45% of people retire earlier than planned. I guess if misery loves company, when the time comes (probably not at 70 as I had planned), that little fact should give me some comfort.

Getting forced out of a job is sort of normal. It is not me (or you either).

If you can get a job, get a job. It does not have to be in your field. A related field would be nice, but not necessary. For example, my specialty has always been assessment but administering and scoring tests has gotten harder. Plan B is to do more counseling.

Try to cut expenses. I have heard of some people who ‘practice’ living on what they will have after they retire. If you can get an estimate of what you will have, that may be helpful.

If you can, postpone filing for Social Security. If you file early, benefits will be a lot less than they would have been if you waited until your full retirement age. Waiting until 70 to file will increase your benefits even more. Since I plan to live to a ripe old age, my thought now is to collect school disability retirement, work as much as I can and fill in the gap by tapping savings. Of course, since I should be eligible for Social Security Disability (SSDI), I will want to investigate that before making a final decision. Seeing a financial consultant early will allow you to crunch the numbers and see which will be to your advantage.

There are several more suggestions in the article. I took the ones out that ‘spoke’ to me. I would refer you back to the source for the rest. Continue reading “Growing Younger”

Wake-up Call

My parents stopped learning about finance and estate planning sometime around 1960. They paid for their house, kept the bills low, wrote a basic will and figured they would have about $70,000 in profit sharing plus social security to live on. Bases covered; right?

Oh, so wrong. Daddy retired early at 64 to care for my mother who had multiple physical and mental health issues. After a stroke at 67, my mother spent 14 months in a nursing home before her death. The nest egg was cut in half for the nursing home and several thousand more was spent on the burial.

Then my father – who was sure he would die in his mid-70s just like his parents – surprised himself and died a month shy of his 87th birthday. Need I say that when I took over his finances things were a bit of a mess?

A September, 2014 report on money and people with disabilities reported 30% of the disabled have a “very difficult time” making ends meet. The disabled are much less likely to have an emergency fund. The disabled are more likely to depend upon credit card loans and charging basic necessities. The credit cards the disabled can be approved for are usually the most expensive ones out there. Assistive devices are costly. It goes on and on and on.

Many of you are older and maybe discovering you could have done a little better planning. However, I know we have a fair number of younger people who have just been diagnosed and have a few good years to get their financial houses in order.

Consider this your wake-up call and never say I did not warn you.

I THINK – and that is a big think – we are OK. My only ‘big’ bill is from vacation. I have made sure we have an emergency fund. I have a will that contains some pretty good protections.

When my vision really went to hell in February I took part of my time off and went to see my new lawyer. (My crackerjack estate lawyer has retired! Sob!) We made sure the things I had in place were still in line with the laws. I would suggest you spend the money and do the same.

Why spend money on a high-priced lawyer? Well, let us just say my old estate lawyer saved me around $50,000 in taxes and fees when handling my father’s estate. I was thrilled.

In the meantime The Council for Disability Awareness has a site that will walk you through “Your Disability Security Plan” and might be helpful. They talk about keeping healthy and guide you towards sites that review other income sources like social security disability income. There are also some suggestions on budgeting and saving.

If you have served in your country’s armed services there are – at least in the USA – veterans’ benefits. I got Daddy’s home care aide, ‘Daddy daycare’ and transportation reimbursed by the Army. They also gave him his medications for free. Don’t forget to tap ‘Uncle Sugar’!

Right now, since I was caught flat-footed by the last drop in my vision, my husband and I are looking around the house and making note of the big-ticket repairs we might need to have done. Get some of that stuff out of the way while the getting is good. I would suggest you do the same.

Continue reading “Wake-up Call”

I Have Macular Degeneration…Now What?

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

Where can I quickly find information about AMD?

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

Click here to go to Guide Me.

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

Click here for a good list of Frequently Asked Questions.

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

What other websites are helpful?

Here are some of our favorites:

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

Click here for a video that covers important information about AMD

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

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

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

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

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

Click here for a very comprehensive page about wet AMD

Click here for a very comprehensive page about dry AMD

Click here for an article about how fast AMD progresses

Click here for 10 questions to ask your doctor

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

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

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

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

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

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

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

Where can I do more research?

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

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

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

How do I move around on the website?

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

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

Reviewed 02/14/2022

Decisions, Decisions

Things are starting to look up with work. Last week and this week I am up to four days. With a little extra effort I might be able to get back to a full week.

People have suggested I retire. Fortunately, those people have not been my bosses! I might have to retire whether I wanted to or not if that were the case. We are talking well-meaning people who see retirement as my best option. But is it?

Truth be known I could make more collecting my disability pension and applying for social security. Financially I would probably be better off.

But finances are only one piece of the puzzle.

[Note to our friends around the world-our options for retirement are quite different & difficult for us to understand let alone explain it to others! When you read the words ‘disability’, ‘pension’, ‘retirement’ and ‘social security’, they are related to a time when one stops working and receives an income from somewhere. Got it?) If you’d like to tell us about the retirement system in your country, please leave a comment.]

Distress tolerance, one of the DBT modules, suggests that when you are in a quandary you should look at pros and cons of your options. What are the pros and cons of my working?

Cons would be I am pulling in mini-money as compared to what I was pulling in and as compared to what I could make retired. I have to spend time going to work when I maybe should be vacationing and seeing things before I am unable to see them. I am running people around hauling my sorry self to work. Those would all go in the con column.

Pros would be things like I promised BVS and a lot of people I was committed to working. They have invested time and money and effort in ME and I owe them an honest effort.

Number 2: I have yet to tap into my financial reserve. We can live conservatively and still build credit towards a better pension and a better financial nest egg. This is particularly since I buy our health insurance through a group plan at work. [Here’s another topic where our countries different greatly.]

And no, I am not putting off living to guarantee a better financial future in my old age. Did you look at the crazy photo gallery Lin posted? I have lived well.

Number 3: I am needed. Now maybe they are blowing smoke up my skirt and maybe I have delusions of grandeur, but I think there is a place for me in the work force. I have some skills and I am capable of contributing.

Number 4: I like my job. I really do!

Number 5: Leaving my job would limit my social interactions and I am a social animal. Not seeing people everyday would be deadly.

Number 6: What would I do with myself all day? Write posts about watching the grass grow? You know, that green stuff I cannot see so well.

So, doing a basic pros and cons list sort of confirmed what I have been thinking all along. Keep working. Wait it out. Reassess and do another pros and cons list down the road.

Pros and cons list are a nice way to examine all of the factors. They allow you to make more logical decisions and avoid distress.

Continue reading “Decisions, Decisions”

Taxman

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

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

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

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

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

There are tax breaks for the visually impaired.

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

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

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

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

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

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

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

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

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

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

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

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

Written March 2016. Updated September 2018.

Continue reading “Taxman”

Toy Story, Too

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Written March 2016. Updated September 2018.

Continue reading “Toy Story, Too”

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:

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.

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
See what vision is like at the various stages of AMD
What is AMD?
Glossary
Websites devoted to AMD and Other Forms of Macular Degeneratin
Websites containing information about AMD and Other Forms of Macular Degeneration
Support groups
Where to find services
Books & reading materials
Videos
Personal stories of living with AMD
Online newsletters
What is Stargardt’s Disease?
Science Stuff
Symptoms
Risk factors
Treatments
Research/clinical trials
- How can I become part of a clinical trial?
Coping with vision loss
Self-maintenance/ self-care
More to come…

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

Go to the Top

Websites devoted to AMD and Other Forms of Macular Degeneration

listed in no particular order

Macular Degeneration Partnership
Macular Disease Foundation of Australia
American Macular Degeneration Foundation
Macula Vision Research
Macular Society (UK)
RNIB (Royal National Institute of Blind People; UK)
RNIB (Scotland) there may be a branch near you.
BrightFocus also Alzheimer’s & Glaucoma
Macular Degeneration Association

Go to the Top

Websites containing information about AMD and Other Forms of Macular Degeneration

listed in no particular order

maculardegeneration.net where you’ll find articles, forums, Q&A, and more for those with macular degeneration. You’ll be interacting with patient and caregiver advocates who are people who have the disease or take care of those with it.
Living Well With Low Vision
Prevent Blindness
for professionals; also a section on Eye Health for the lay person: American Academy of Ophthalmology (AAO)
CNIB (Canada)
Foundation Fighting Blindness
MD Support: The Eyes of the Macular Degeneration Community
All About Vision
American Foundation for the Blind and VisionAware (related)
Fight for Sight
Enhanced Vision
National Eye Institute: Macular Degeneration
Second Opinion: Macular Degeneration
Wikipedia: Macular Degeneration
Mayo Clinic (search for macular degeneration for articles on wet and dry)
Patient Info: Macular Degeneration
eyeSIGHT International: Sight for Humanity (links to International, North America and UK branches)

Go to the Top

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.

Support by telephone
Support groups US
US & International Support Groups in the US and internationally
UK: Macular Society and RNIB
Canada: CNIB

Message Boards including ones from

APH Connect
Macular Society HealthUnlocked in the UK
UK’s NHS site for AMD community page
Facebook: Macular Degeneration Community, Stargardt’s Disease – Macular Degeneration, I’m sure there are others so search by ‘macular degeneration’
maculardegeneration.net where patient and caregiver advocates are there to help
Our Facebook page: My Macular Degeneration Journey/al
Treatment & Charles Bonnet Buddies UK
BrightFocus Foundation: Share your story, read story of others

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

International Low Vision Support Group (US)

Go to the Top

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

Scholarships & Financial Aid for Students with Disabilities – https://www.accreditedschoolsonline.org/resources/scholarships-financial-aid-for-students-with-disabilities/
Higher Education for Students with Disabilities – https://www.accreditedschoolsonline.org/resources/best-accredited-colleges-schools-for-students-with-disabilities/

Go to the Top

Books and reading materials

Specific Titles

not recommendations, just referrals.
A list of some books available about the prevention, treatment and daily living of macular eye diseases and low vision
Making Life More Livable: Simple Adaptations for Living at Home After Vision Loss. Also available from AFB as a download, large-print paperback and several e-book formats.
The First Year: AMD written by patient-expert
Fiction book called ‘Seeing Things’ about a woman with AMD. Includes information about AMD
The Complete Guide to Saving and Maximizing Your Sight 2003
Protect Your Sight: How to Save Your Vision in the Epidemic of Age-Related Macular Degeneration 2006
Eat Right for Your Sight from the American Macular Degeneration Foundation

Sources of Books

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

US Library Service provides ‘Talking Books’ in Braille & audio
US BARD (Braille and Audio Reading Download) also from the US National Library Service
US BARD & BARD Mobile: YouTube video talking about the service
UK RNIB Overdrive: ‘Talking Books’ by digital download
Worldwide Kindle e-books, click here for sources for international purchases
Worldwide Kindle e-book readers: which is the right one for people with low vision?
Worldwide BookShare: free eBooks 300,000+ titles including all current and recent NY Times bestsellers; free for students, $50/year with $25 setup fee
Worldwide DAISY (Digital Accessible Information System): source of e-books
Worldwide Overdrive: borrow e-books & audiobooks from local libraries
Available in many countries, audible.com (an Amazon company) sells audiobooks (click here for specific countries)
US & Canada Sources of large print & Braille reading materials
Many countries of the world BookBub: Free and inexpensive e-books covering many genres for various devices
Similar to BookBub is Early Bird Books a source of inexpensive books for various devices
Sue’s page about Talking Books and BARD
Sue’s page about BARD

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Videos

full length DVD called “Hope & Cope”
Excellent video & article about the progression of symptoms & treatments for MD
Quite a few videos covering many aspects of AMD
DVD videos about wet and dry AMD
Hope & Cope: Living Well with AMD
Explores research on treatments and potential cures for age-related macular degeneration (AMD)
Public Service announcement American Macular Degeneration Foundation
What is Macular Degeneration by AmerraMedical, a medical communications company
What is Macular Degeneration, a video from the Macular Disease Foundation of Australia

Go to the Top

Personal stories of living with AMD

The Experiences of a land surveyor in Australia who lost the central vision in one eye to MD and then 20 years later, lost the central vision of his other eye; lots of links to other webpages
One of the first people to have a trial retinal transplant (UK) published Feb. 2016
LONG list of people from all over the world who are living with Stargardt’s Macular Dystrophy which is very much like AMD but usually diagnosed at an early age.
What Role Does Disability Play in Your Identity?

Go to the Top

Online newsletters

American Foundation for the Blind provides newsletters for various topics
WebRN Macular Degeneration News
American Macular Degeneration Foundation: News about MD
Lighthouse Guild: E-News
You’ll need to create an account: VisionAware: Join the VisionAware Community

Go to the Top

What is AMD?

Click here for “What do I do if I get a diagnosis of AMD?”
Video: Animation of AMD, wet and dry forms
from the NHS in the UK: not only a thorough explanation of all aspects of AMD but also real stores, clinical trials and a community group.
A comprehensive and more technical article
American Macular Degeneration Foundation: Learn, Home & Thrive
AMD Macular Degeneration Partnership: Overview and Statistics
About AMD
Medical News
Taking a Closer Look at AMD (pdf file)
8 Things I Wish People Understood About My Vision Loss

Wet Form

Wet AMD types & risks for developing it in the second eye
Wet AMD–the whole page is good. There are excellent diagrams that explain the process in the section ‘Wet ARMD – exudative/leak’
Video that explains how wet AMD progresses and how the injections work.

Dry Form

Dry AMD–the whole page is good. There are excellent diagrams in the section ‘The Retinal Changes in ARMD’
There are different types of drusen and they mean different things
“Arm Yourself for Dry AMD”, January 2017 article for Optometrists; contains the most up-to-date knowledge of dry AMD

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

Go to the Top

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.

Article with information about risk factors, treatments, etc.
Macular Degeneration in Young Adults, People & Kids
Great list of links re. SD
2011 Expert Answers on SD‘
Blog: Living with SD
One of many YouTube videos on SD
This article explains the genetic aspect of SD

Go to the Top

The Science Stuff

Here’s a refresher course in eye anatomy with a diagram and definitions

Role of RPEs

Scientific article about the role of RPEs

Geographic Atrophy

Go to the Top

Symptoms

Charles Bonnet Syndrome/Visual hallucinations

Chuck Bonnet and the Hallucinations
Charles Bonnet Syndrome: Why Am I Having These Hallucinations?
Why am I seeing what I am seeing?

Go to the Top

Risk factors

January 2017 published, article “Nutritional and Lifestyle Interventions for Age-Related Macular Degeneration: A Review”
Diet, Exercise, Smoking Habits and Genes Interact to Affect AMD Risk
Comprehensive list of common possible causes
Risk factors you can and can’t change

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

Caucasians more prone to AMD than African-Americans or Hispanics/Latinos (several references to this but no recent studies).
2012 database search ‘AMD by race’
Study about the higher-than-other-racial-group incidence of AMD in those of Chinese heritage.

Gender

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

Uncontrolled high blood pressure

Reducing high blood pressure is important but some medications to lower it can make vision loss worse
List of references to consumer comments about high blood pressure and AMD
Research study linking hypertension to AMD, risk factor for wet AMD; indicates a person with hypertension 1.5 times more likely to develop AMD than those with normal blood pressure
Which comes first: high blood pressure treatments or AMD?

Uncontrolled high cholesterol

High cholesterol linked to AMD, also some evidence that Statins to treat it can help prevent it
Can statins help prevent AMD?
A handful of walnuts a day can prevent heart disease, reduces cholesterol.

Smoking

Blue Light

Click here for “Why should I be concerned about ‘blue light’?
What can I do to protect my eyes outdoors? Includes a detailed explanation about the different types of light
Violet and blue light of the UV spectrum worsen AMD. Sources: 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 article with references to research on blue light.
There’s concern for how much time we spend on computer and other digital devices.
Be careful after cataract surgery since implanted lens may not block UV light as our natural lens.

Eye Color

People with light-colored eyes (ie light-colored iris) are more likely to develop the dry type of AMD. This is because light-pigmented eyes offer less protection from damaging UV light.

Aspirin & other medications

for those with wet AMD, aspirin MAY cause them to bleed more because it interferes with clotting. But talk with your doctor before you stop taking it. Many doctors believe that the benefits of taking aspirin outweigh the risks.
Highlight: Is there a connection between drugs taken for osteoporosis and wet macular degeneration?

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

Researchers found link between AMD and AD that is the lack of enough specialized proteins to remove waste products in the retina and the brain. March 2016

Go to the Top

Treatments

FDA approved options in the US, injections, implantable telescopes, laser treatment (also outside the US)

Injections for Wet AMD

Recent study (published May 2016) about the status of AMD before and after anti-VEGF injections.
Medications injected into the eye and lasers to seal abnormal blood vessel growth only
Comparing the medications used in injections

Telescopic implants

UK Implant of tiny telescopic lenses
US Implant of telescopic lens for those with advanced stage wet or dry AMD. Candidates have to qualify including no longer be candidates for medications.

Are there new treatments in the pipeline?

Click here for a summary of AMD research and developments in the past 12 months (posted June 2016)
Are there new treatments coming? March, 2016: for wet AMD, researchers are working on a slow-release medication and possible new drugs.
Sustained release treatments
Article from 2014 with overview of advances to that point & discussion of what was in the pipeline then

Vitamins (see Self Maintenance/Self Care section below)

Warning about zinc in the AREDS formulas Individual reactions to zinc, it can cause vision to worsen in people with certain genetic makeup (there’s a test available) March 2016

Go to the Top

Research/Clinical trials

Click here for a summary of AMD research and developments in the past 12 months (posted June 2016)
Summary of Research & Developments 2017
Research in the UK into earlier detection and treatment
Click here for a 28-page brochure from the National Eye Institute (NEI) called “Clinical Trials in Vision Research: Information for Volunteers
Click here for more information about ongoing clinical trials for dry AMD.
Click here for more information about ongoing clinical trials for wet AMD.
Sustained-release treatments for wet AMD (after you read this article, if you are interested, do a search on the link above to ‘more information about ongoing clinical trials for wet AMD’.
Study where drug in an injection would last longer than current drugs for wet AMD.
Article CNN March, 2016, article about ongoing clinical trial in London which has had encouraging results. In addition to information about the study, it includes a simulation of vision loss due to AMD, a description of the disease process, and a good explanation about how stem cells work for AMD and other diseases.
Click here for a description of the Audacious Goals Initiative (AGI) and what it is. Briefly, it started as a contest to come up with the most innovative goal for improving vision. The ‘winning’ goal is “to regenerate the neurons and neural connections in the eye and visual system.”
Key Research including AREDS, AREDS2, Blue Mountain Eye Study, The Beaver Dam Study, and others

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

Gene Therapy Research

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

Go to the Top

Coping with low vision

Low Vision Aids

Click here for a video which is an overview of assistive technology
Click here for “Top 10 Low Vision Aids for AMD”
Click here to go to computer/tablet/phone aids/apps
5 Ways to Browse the Web if you Are Blind or Visually Impaired
Guide to buying low vision aids
What kinds of low vision aids are available?
Be My Eyes is an iPhone app where you connect to a ‘live’ person to help you
A great overview of assistive technology for those with low vision from IPAT (North Dakota Interagency Program for Assistive Technology).
Top 10 Products for Independence
What you need to know about magnification

Wearable Technology

coming soon!

Suppliers of low vision aids

Enhanced Vision, you can have a catalog sent to you
Suppliers of low vision products
Zoomax assistive technology for those with vision impairments.

Financial Help

A comprehensive list of sources for help including from companies who make Avastin and Lucentis.
Help from the company who makes Eylea.
An organization called GoodDays in the US
In the US, you may qualify for Social Security Disability. Click here for the details.
Financial help for injections: Patient Access Network (PAN)
Click here for information about financial help for injections
How can I get a free exam and glasses in the US?

Sunglasses

Type of sunglass lenses: UV filter (blue blocker), clip-on, regular, wear over glasses
What can I do to protect my eyes outdoors? includes an explanation about the various types of light
Search results amazon.com ‘sunglasses filter out blue light’
Things to look for in sunglasses
This site says that they will give you a free pair of Cocoon sunglasses for participating in their study (I haven’t checked them out)
Finding blue-blocking sunglasses in the UK
Find online at Amazon for the UK. Cocoons are available, other brands as well often called ‘driving glasses’
Serengeti Technology sunglasses can be ordered online
Oakley is another brand that can be ordered online & possibly in the stores
Another source for Haven and other brands

Lamps

Better lighting for AMD, best types of light and hints for using them
New technology lamps
More lamps, better bulbs
Lots of tips for better lighting

Transportation

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

Bioptic Driving

An overview of driving with adaptive equipment

Depression

AMD & Depression
Reduce Depression
Rehabilitation helps prevent depression for people with age-related vision loss
Dialectical Behavior T herapy (DBT) used successfully by the author (Sue) of the pages on this website.

Checking vision

Overview of how to check your vision regularly “How do I know if my vision changes?”
“When should I get my eyes checked?”

Amsler Grid

What it is, how to use it, download a copy

Go to the Top

Self maintenance/self care

An overview of self-maintenance
General hints for coping when reading, writing, using the TV and appliances, etc.
Coping with one good eye

Low vision rehabilitation

Overview of types of low vision rehabilitation
Click here for “Is there any way I can better use the vision that I have?”
Click here for “Who are the people who will help me?”
Eccentric Viewing: You can teach yourself how to use your peripheral vision to read the printed page with a technique called Eccentric Viewing
Click here for what is called the Steady Eye Technique in the UK
Click here for “How can I adapt my home so I can be safe and independent?”

Vitamins/Supplements

Post: Should I take AREDS or AREDS2 vitamins?
Click here for an eye doctor’s experience with a patient who ‘prescribed’ the AREDS2 vitamins himself.
How much sunlight do I need to get enough vitamin D? Click here and scan down the page to the section Vitamin D.
Warning about the AREDS supplements from the Macular Degeneration Association
What you need to know about your AREDS supplements
Where to buy vitamins, alternatives to the exact AREDS2 formulation
Research in Ireland into Nutritional Supplement based on plant pigments (carotenoids)
saffron ‘cures’ AMD in research study, Feb. 2013

Nutrition

Macular Degeneration Diet and Prevention Plan by Dr. Stuart Richer, OD, PhD, Ocular-Nutrition Laboratory in DVA Medical Center Eye Clinic, North Chicago, IL
Eyefoods website & Facebook page:
Eat For Your Sight Cookbook
Good Nutrition and Eye Health
Anti-inflammatory diet because inflammation has been linked to macular degeneration
Food high in Lutein and Zeaxanthin
Eat right for good general health & eye health
Good page talking about various dietary recommendations including anti-inflammatory, high Omega-3 and rich antioxidant
Article warns of eating artificial fats to AMD (talks about risk factors)

Exercise/Activity

Blind Yoga: CDs for sale
BlindAlive: audio-described workouts for sale, several delivery methods

Next: FIGHT THE GOOD FIGHT

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Next: IN THE MOMENT

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Independence

Supplements

Linda on Assignment

More to come!

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Where can I quickly find information about AMD?

What other websites are helpful?

Where can I do more research?

How do I move around on the website?

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

Thanks!

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I’ve added some pages from that group that might be of interest to you.

Frequently Asked Questions

AREDS2-based Supplements

AREDS2-based Supplements With 0 or 25mg of Zinc

Navigating

Topics-click below to move to a topic

Links We Like

See what vision is like at the various stages of AMD

Glossary

Websites devoted to AMD and Other Forms of Macular Degeneration

Websites containing information about AMD and Other Forms of Macular Degeneration

Support

Message Boards including ones from

By postal mail

Start Your Own

On the phone/telesupport

Where to find services

Resources for Students

Books and reading materials

Specific Titles

Sources of Books

Videos

Personal stories of living with AMD

Online newsletters

What is AMD?

Wet Form

Dry Form

How fast does AMD progress?

What is Stargardt’s Disease?

The Science Stuff

Role of RPEs

Geographic Atrophy

Symptoms

Charles Bonnet Syndrome/Visual hallucinations

Other problems with vision & AMD

Risk factors

Age

Diet/nutrition (working on this section)

Race

Gender

Uncontrolled high blood pressure

Uncontrolled high cholesterol

Smoking