macular degeneration, macular, diagnosis magnifyer – My Macular Degeneration Journey/Journal

Caveat Emptor

So we have come to the middle of another week. Hump day, Wednesday!

I looked up funny hump day jokes and found a slew. You can take your pick. Some of them are giggle-out-loud quality.

Anyway, I taught today and then went over to the sight loss support group. My low vision person was presenting the latest in low vision technology, the MoJo monocular.

Mojo monocular

I cannot give you much of a spiel on it. I have not done much more than glance through it and pass it on. Therefore, as usual, this is just me telling you what I read. No recommendation.

The MoJo is a magnifier that works both near and far point. The price for the handheld monocular itself is about $1500. Add the part that can turn it into a CCTV and you are looking at $3000 or so. The manufacturer, Enhanced Vision, advertises a large field of view and autofocus capabilities.

This may be a great addition to the list of low vision tools. May not be. The MoJo has only been on the market for two or three months. If you are interested and have the money, try it and give us a product review.

And continuing in the interested and have the money vein, I have started to see articles suggesting that, in spite of its celebrity endorsements in the UK, the Eyemax Mono may still have some bugs to work out. The Daily Mail reported the Macular Society is suggesting caution before you agree to undergo this expensive procedure. The cost being quoted is £15,000 which at present exchange rates is approximately $19,480 (May 2017). Ouch. And if you are an American, remember the Eyemax Mono is not FDA approved and added to that cost would be a trip across the pond.

In short, it sounds promising, but remember caveat emptor. Use extreme caution before committing to any new procedure. Do your homework. Nothing is ever as good as it sounds at first blush.

The newest implant this side of the pond is a miniature telescope. This one is FDA approved so it should be both effective and safe. The manufacturer is VisionCare.  The surgery is Medicare eligible according to the article so we are not talking about huge out of pocket costs. That is a plus.

Now, once more, on the minus side, this is not a cure and will not halt the progression of the disease. All it is is magnification and a spreading of the image to intact parts of the retina. They have moved the magnification system from the outside in.

They also will only do the implant in one eye. That is because there is a ‘tunnel effect’ in the vision of the treated eye. The untreated eye is used for peripheral vision.

Another problem with the telescope is the need to train the brain. There is a period of several weeks during which the patient is learning to adapt to a new way of seeing.

Bottom line, things are progressing but not necessarily in the areas of treatment or cure. All three of these things mentioned magnify and move the image to intact retina. Close, but no cigar.

My personal preference is to find something medical that will stop the disease progression in it’s tracks. Barring that, magnification and relocating the image may bring you an undetermined period of better sight. You pay your money and you take your choice….just do it wisely.

May 10th, 2017 Continue reading “Caveat Emptor”

A Day in the Life

  1. Hello. Lin told me she has a number of new people in the Facebook group and that many of them may not be aware of the variety of assistive devices available to those of us with vision loss. Lin suggested I review the things I have and use in a typical day. I will do this here. Some things to keep in mind:
  • Please read with the understanding this is a cursory review only. More information is available in past pages. I will remind you how to search our website at the end of the page.
  • Also, I’m not specifically recommending anything since choosing these devices is a very personal thing based on the status of your eyes and what you want/need to do with the vision that you have.   What I use was selected for me by the counselors with Pennsylvania’s Office of Vocational Rehabilitation (OVR) Bureau of Blindness and  Visual Services (BBVS or BVS) so that I could continue to work.
  • We don’t get any money or services for what we include in my pages.

Here goes…. A Day in the Life

Disclaimer: I am not recommending any particular service or project, just reporting on what works for me.

One option for a low zinc AREDS2 supplement.
One option for AREDS2 supplement

Today is Sunday so I can afford to be a tad lazy. When I get up I take my medication including my low zinc AREDS2 formula vitamins. There is not much help from taking these supplements in the advanced stages but the minor disease slowing they found at other stages is better than nothing if they do occur.

one source of low vision aids

Being the dutiful granddaughter of Welshmen, I have toast and tea (with milk, of course!) for breakfast. Simple preparations do not require great accommodations. However, if I were ‘Becky Home Ecky’, I would own all sorts of nifty, kitchen gadgets from the MaxiAids catalog.

iPad Mini
iPad Mini

Since it is Sunday, I grab my iPad Mini and plop down on the couch. My iPad has been my salvation. I can check my email by using the pinch and zoom feature. I also have larger text turned on. If you go to settings – general – accessibility you can find a dozen other things that may be helpful.

 

Apple App Store
Apple App Store

My Vision Rehabilitation Therapist (VRT)  Blindness and Visual Services literally stuffed my iPad with apps. The ones I actually use are Magnify and Freeze and a large button calculator. It is also sort of fun to demonstrate the wonders of technology to people using the KNFB Reader. There are about a dozen others on there. Some of them are for people with much worse vision than mine at present. Hope for the best and prepare for the worst; you know.  Today I have been carrying my iPad around while I do chores. I am listening to an Agatha Christie novel on my BARD app. Hercule Poirot is such a clever, little man.

ipadtotv
iPad screen bottom left of photo, enlarged onto TV

 

I can plug my iPad into the TV so that I can see everything on its screen.  I don’t use it much since I can use the Zoom feature on the iPad. Click here to find out how I connected them.

 

 

Magnilink Zip 17 portable CCTV
Magnilink Zip 17 portable CCTV

Since I start teaching again on Wednesday I have my portable CCTV setup which is the MagniLink Zip 17 (photo on left). That way I can review my notes and actually be able to see them! If the CCTV breaks (bite my tongue!) I can always fall back on the iPad with Justand V2 (photo on the right).

 

Ott flip light
Ott flip light

I’m going to need to put together an outfit to wear but I need extra light to make sure I’ve got the color right.  I put my little Ott flip light on the “ironing board in the bedroom to help with that.  I also have an Ott floor lamp in the bedroom for extra light.  I can put the little Ott in my purse if I need extra light to find something.

Speaking of my purse, I carry my iPad Mini, Smartlux reader and MaxTV lenses in my purse.

 

We did not go out to lunch today but if we had, I have my Smartlux reader/magnifier in my purse to read menus.

 

 

Glasses to cut down on glare
NOIR glares glasses
Small monicular
small monocular

Later when I take the Beastie Baby for her walkies I will have my glare glasses on and my monocular around my neck. Since the old darling and half of the other dogs get to run off lead at the dog park, it is good to be able to see which of our friends is across the field.

 

Sue's Telescopic Glasses
Max TV Telescopic Glasses

This evening if I want to watch TV, I have my Max TV telescopic glasses. I use those to do classroom observations at my school job. The little kids like them because my eyes look huge when I wear them. They can be handy in a store when I’m trying to find something.

 

 

Those are the basic, low vision tools I use at home. If this were a workday I would also tell you about the zoom text app on my work computer. Absolutely essential if you are using a standard PC.

Hope that quick review helped. Don’t give up hope. With technology, things can be a lot better. Remember, comparatively speaking, you are losing your vision at the best time in history thus far.

If you want to review the pages where I talk about these devices, you can use the 3 ways to search our website: 1) search website; 2) categories and 3) tags/keywords. You can find these either in the right-hand column or at the bottom of the page.
Continue reading “A Day in the Life”

News: July 15, 2016

Toy Story, Too

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Written March 2016. Updated September 2018.

Continue reading “Toy Story, Too”

Toy Story

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

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

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

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

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

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

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

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

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

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

Click here for Low Vision International and Eschenbach.

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

Written March 2016.  Updated September 2018.

Continue reading “Toy Story”