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Sue’s Musings: Then and Now – Part 5 – 2/1/2018

If you are looking for the page Sue’s Toolkit – 2 Years Later, click here.  I’ll be republishing this page in a few days.

 

I’ve changed the direction of this series to share the pages Sue wrote about the apps and technology that she uses or has tried.  This is just the first page, more to come.


Sue’s Toolkit

Two of the most popular of Sue’s pages are about what apps and devices she uses at work and at home to keep up with her busy schedule:

When Sue’s vision declined in early 2016 & temporarily prevented her from being able to work, she contacted Pennsylvania’s Office of Vocational Rehabilitation’s (OVR) Bureau of Blindness and Visual Services (BBVS).  They helped her financially & with advice from Vision Rehabilitation Therapists (VRTs), she put together a ‘toolkit’.

Next in this series: Sue’s page about which of the apps and devices she’s still using 2 years later.

Technology she’s written about

Managing medications

There are apps that allow you to create audio labels for your medications & some pharmacies will print audio labels for you–>Managing Medications

Audio ATMs

Some ATMs allow you to plug in earphones so you can hear instructions–>Talking to Your ATM

Navigating inside and outside

BlindSquare App – Aug. 2nd, 2017

App & device to monitor your eyes

ForeSeeHome device and MyVisionTrack app – by prescription to monitor your eyes–>Keep an Eye on Your Eyes

Implants below the retina – Bionic Eyes

The Argus 2 and Prima implants for severe vision loss–>Before I Go

compiled 1/28/2018

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Keep an Eye on Your Eyes

I gave up trying to be perfect a long time ago. Too much like work. That is the reason I get it when people let things lapse. You meant to call the doctor about the vision change you think you are seeing but another day is gone and you never got to it.

Or how about this one? You don’t want to bother such a busy guy (or gal) with a silly, little worry. Then there is the forever popular, if I don’t think about it, it will go away!

Yep, dozens of ‘good’ reasons for not monitoring your vision and keeping your doctor in the proverbial loop. My reason for seldom if ever monitoring? (Come on! At least I own it.) My macula is so far gone I am back on biannual visits. I have it on good authority I will most likely not progress to wet AMD. Relief, yes, but I still sort of wish there was enough left I had to worry.

But that is me. There are plenty of you who are still at risk for developing wet AMD. There are also plenty of you who wish they had responded to early warnings before they lost vision. Since that second group are living testimonies to the fact things happen when we are not paying attention, how do we pay better attention to the progression of our disease?

For years the only game in town has been the Amsler Grid. This being the age of technology it is certainly understandable there are suddenly all sorts of machines and apps that not only do the job of monitoring but also narc on you and call your doctor! (Big Brother is even watching your eyes!)

I did a page on myVisionTrack a while ago. I downloaded it but could not play with it because it needed a script from my doctor. It was also for pay. So far this year we have replaced the washer and the dishwasher, rehabbed the pool and had Beastie Baby to the puppy doctor a few times; forgive me if I don’t invest in some of these things. If you use the service, please comment.

The new one I just discovered is ForeseeHome. This is manufactured by Notal Vision, an Israeli company. The company provides an electronic device that is connected to a telecommunication system. Everyday the patient takes three or four minutes to test her vision. If there is a significant change both the patient and her doctor are notified of the need for an immediate appointment.

ForeseeHome is again by prescription only. The frequently asked questions on the website suggest the unit and service are Medicare covered if you meet the eligibility. Apparently you have to be “dry AMD at high risk of progressing to wet AMD”. Am I sure what that means exactly? What I think it means is someone may have to jump through hoops to get Medicare to actually pay for it, but you can get one with a good argument.

If your doctor wants you to monitor much more closely than you are, one of the new electronic systems may be for you. Spend three or four minutes once a day. Eliminate the guesswork. Eliminate feeling guilty for ‘bothering’ the doctor. Help save your sight.

Written August 9th, 2017

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Highlight: When should I get my eyes checked?

Did you recently get a diagnosis of AMD?  Was it such a shock that you don’t remember much about what the doctor told you about when to get your eyes checked?  Or did you not discuss it at all? The latter situation is all too common.  Of course, a lot of that depends on the type of AMD (dry or wet) and the severity.  It is VERY IMPORTANT that you treat any vision loss as an emergency.  Call your eye doctor as soon as possible.

Here’s a great video showing how an eye doctor should examine your eyes and how he/she would be able to detect AMD.

In the video, the narrator states that everyone who is 60 and older should have a comprehensive dilated eye exam once a year. Of course, if you are having problems you should NOT wait a year, call for an appointment as soon as possible.  However, if you are at higher risk due to race, age or family history of AMD, that may mean you will see your eye doctor more often.

Between eye exams, you should be monitoring your own vision using an Amsler grid on paper or on a computer, tablet or smartphone.  Here is a great article explaining the importance of home monitoring and showing an Amsler grid, where to get one, and how to use it. It also describes the ForeseeHome Monitoring Device which is connected to the doctor’s office.  Click here for that article.