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!”

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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 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 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? Continue reading “A Dozen Years of Progress”

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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

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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”

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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.

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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.

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