Will I Go Blind?

“Will I go blind?” is one of the most common and emotionally-charged questions asked when a person gets a diagnosis of many of the retinal diseases such as Age-Related Macular Degeneration, Stargardt’s Disease (and others) that damage central vision.  I did several searches with different variations of the question and here are some of the the answers I found.

Terminology
  • This is just a partial list of terms, please go to the the complete list – click here:
    • Total blindness refers to an inability to see anything with either eye.
    • Legal blindness is a level of vision loss that has been legally defined to determine eligibility for benefits. The clinical diagnosis refers to a central visual acuity of 20/200 or less in the better eye with the best possible correction, and/or a visual field of 20 degrees or less. Often, people who are diagnosed with legal blindness still have some usable vision.
    • Vision loss refers to individuals who have trouble seeing, even when wearing glasses or contact lenses, as well as to individuals who are blind or unable to see at all.
    • Visual impairment is often defined clinically as a visual acuity of 20/70 or worse in the better eye with best correction, or a total field loss of 140 degrees. Additional factors influencing visual impairment might be contrast sensitivity, light sensitivity, glare sensitivity, and light/dark adaptation.
Links & Answers
  •  From http://www.southlandeyeclinic.com/FAQ/macdegen.html
    • “Will I go completely blind from AMD?
      No. You will never go totally blind from AMD. AMD affects only the central vision. Around the macula is the retina responsible for side vision (peripheral vision). The side vision lets you know what is around you. You will be able to walk around, dress yourself and do most daily tasks. Peripheral retina is not affected by AMD and there is no loss of side vision.”
  • From http://www.besteyedoc.com/milford/macular-degeneration-faq.htm
    • “Q.  Will I go blind?  A.  No, patients do not go blind from wet or dry macular degeneration. You can, however, unfortunately become legally blind which means that the central vision is poor enough to result in your better eye seeing no better than 20/200 vision. However, being legally blind is not the same as medically blind.”
  • From https://nei.nih.gov/health/maculardegen/armd_facts
    • “AMD by itself does not lead to complete blindness, with no ability to see. However, the loss of central vision in AMD can interfere with simple everyday activities, such as the ability to see faces, drive, read, write, or do close work, such as cooking or fixing things around the house.”
  • From http://www.nhsdirect.wales.nhs.uk/encyclopaedia/m/article/maculardegeneration/
    • “AMD doesn’t affect your peripheral vision (side vision), which means it will not cause complete blindness.”
  • From http://www.brightfocus.org/macular/chat/what-you-need-know-about-dry-age-related-macular
    • “GUY EAKIN (interviewer): So you say 10 to 15% progress to the wet form, I like to hear 85 to 95—85 to 90 don’t progress to the wet form, but it’s the same message either way. We know that many people out there are fearful that AMD will blind them, it’s described in so many places as a blinding disorder and I understand that has some technical context to it that may, it may not be the complete story just to say that it’s blinding.  So what do you tell patients when they ask you, “Will I go blind?”
    • “GAYATRI REILLY (The Retina Group of Washington, “who has excelled in research, patient care, and educating other eye care professionals about treating diseases such as age-related macular degeneration) : Well, you know, I think it’s a question I get every single day, and it’s extremely important to address.That answer has changed over time, as you know. First of all, with even the most severe form of macular degeneration, this affects the central vision only, which—the difference between that—you use your peripheral vision less often, but when you’re not focused on something, you still see other parts in your vision, and that’s your peripheral vision, and that will always remain intact with even the most severe form of macular degeneration.  And the reason why this answer has changed over time, it was only as little—about 15 years ago, we had no treatments at all for wet macular degeneration, and the central part of the vision was something that we would expect for patients to lose, but now, over the past 10 years with research, and the treatments have changed dramatically, and what we can actually tell patients and have the expectations are that we hope to maintain good vision—and good vision including vision that’s capable for driving, for reading, and that’s the expectations that I would hope with early diagnosis.”
  • From https://www.secondopinion-tv.org/episode/macular-degeneration

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BIG News!

Woke up with a start at 2 am last night. Probably several things.

First thing that happened was a call from one of my contracts. She had called my third place of employment to schedule an evaluation and was told I did not work there anymore!

News to me! Now, I don’t get there a lot but the plan was for me to go and do a case or two when called. Maybe something like once every six weeks or so. I was never told I was being fired!

Of course it turns out someone got something wrong but it did get me to thinking. Once again, how does one graciously bow out or – hopefully equally graciously – be shown the door? Inquiring minds.

The second thing that has me a little anxious is my big ‘field trip’ tomorrow. I am going to do some sightseeing on Manhattan with an acquaintance from school. First time that far away from home without my husband since my sight loss. I know it can be done, but it is still a little scary.

Third thing: I saw Regillo yesterday. My eyes are getting worse slowly. (I am not so sure about the slowly part!) He confirmed scotomata (aka blind spots) get darker but did not necessarily say they go black. He said that he would not expect a central vision loss to cover 60 degrees of arc. That wide a loss would be ‘extreme’. Those two answers at least get us slightly closer to settling two of my burning questions from this Spring.

The big news, though, is he wants to try me on lampalizumab next winter. It appears the phase 3 clinicals are going to wind down by the end of the year and phase 4 trials will be starting.

People, the numbers of subjects in phase 4 trials is BIG. HUGE! Phase 4 trials take place after the FDA approved the marketing of a new drug. The drug is made available to the public through local physicians. They look for effects and side effects in diverse populations.

What this means for you is simply this: the first actual TREATMENT for geographic atrophy may only be six months away! This is the first breakthrough!

Lampalizumab is an injectible drug. It has been proven to slow the progression of geographic atrophy and to “reduce the area of geographic atrophy” by 20%. Dosing occurs monthly or every six weeks.

Will I do it? Probably. I really believe stem cell replacement of RPEs is the way for me to go, but it is taking forever and I don’t have time for forever. Lampalizumab can be administered locally and would avoid lots of trips to Philly. I don’t like the idea of intravenous injections but I don’t like the idea of a vitrectomy either! A 20% decrease in disease progression might win me enough time (and macula!) to have a more successful intervention later.

If you have dry AMD and geographic atrophy, it might be worth your while to broach the subject of lampalizumab with your retinologist. Let him know you are interested. This could just be the start of something big for all of us.😁

Continue reading “BIG News!”

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Hodge Podge

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

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

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

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

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

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

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

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

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

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

End of lecture.

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

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

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

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

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Hindsight is 20/20

Good evening! How are you all?

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

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

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

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

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

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

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

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

You did not cause this.

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

There may come a time you are seeing things.

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

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

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

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

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Taxman

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

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.

Click here for more information on the tax breaks for disabled taxpayers. This is an IRS document called Tax Highlights for Persons with Disabilities.

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.

Here is a YouTube video where you can listen to Lex the Service Dog tell you about the IRS accessibility features.  He speaks while signing with ASL and you can turn on closed captions.

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.  A quick search shows that you can deduct medical expenses for things such as guide dogs/other service animal (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 dependent 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.

Continue reading “Taxman”

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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.

Continue reading “Toy Story, Too”

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Toy Story

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

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

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

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

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

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

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

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

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

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

Click here for Low Vision International and Eschenbach.

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

Continue reading “Toy Story”

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