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

News: Sept. 1-2, 2016

Sim City for Low Vision Folks

I have already written a love letter to Amazon. Today I am going to write a love letter to the Apple app store. So, I’m fickle. Shoot me.

There are some cool, free things in the App Store. I downloaded a magnifier that uses the camera on my tablet to take images and enlarge them, for example. However, today I want to talk about the Macular Degeneration Simulator.

People are great. I said that before but it bears repeating. People are great but unless AMD has touched them directly they have not a clue what it is. You know how people hear ‘visually impaired’ or ‘centrally blind’ and all they think about is total sight loss! People have a lot of wrong ideas about what is going on with us AMD folks.

People are great but many hear ‘visually impaired’ or ‘centrally blind’ and all they think about is total sight loss!

I have had several people take my arm and try to steer me. Sweet and caring thoughts are behind the actions. However, I don’t really need that kind of help. I can still navigate pretty well and expect to be able to do it for some time to come.

Several sweet people have taken my arm to try to steer me but I can still navigate pretty well.

I have also had several people suggest I get a dog. To begin with, the beastie baby is used to being an only dog. Also, unless you can find me a dog that can read, tell me whom I am looking at and drive, I have no use for a service dog.

Like I said, people are great, but they don’t get this Macular Degeneration business. Enter the handy-dandy Apple AMD Simulator.  On your iPhone or iPad go to the App Store and search for ‘macular degeneration rnib’. RNIB stands for Royal National Institute of Blind People. [As of October 2018, the iPhone version of this app is NOT available but there is a version for the Apple iPad. Check the App Store on your iPad.]

I downloaded this app from the App Store. It is a great price: free. It has four settings: normal, early, middle and *shudder* late disease. The late simulation scares the bejesus out of me.

The Apple AMD Simulator has 4 settings: normal, early, middle and *shudder* late disease.

How I see is worse than early and less than middle. I went from basically normal to that in about two weeks time, but that was an earlier post.

I have been using the AMD Simulator to show people how I see. A fair number of them have expressed relief; they realize my vision is not great, but not as bad as they had feared (at least not yet). The late setting scares the bejesus out of them, too. It makes me feel good that they understand and feel better. Also, being an educator at heart, I feel good that I have been able to share some knowledge.

So there that is. If you have folks in your life who don’t get it, try showing them how you see. The AMD Simulator is in the App Store and it is free.

I highly recommend the free Apple app AMD Simulator to show folks what AMD actually is.

Written March 2016. Reviewed September 2018.

Attention Walmart Shoppers

I had two ‘firsts’ yesterday. Not that I had not done them each a thousand times before but these were the first times I had done them as the new – but not necessarily improved – me.

The first new thing I did was go into Walmart  – alone. I was not thrilled with the idea. As I said before, I cannot see faces and Walmart was full of people. What if I snub somebody again? Also the day before I had gone to Staples and had trouble with the credit card machine. Came out of there in tears. Something so simple and I had screwed it up!

Just the same, my husband was not going in with me, so I put on my big girl panties and sallied forth. Here goes nothing.

First thing, make sure you know where the car is, Susie Q. I have already walked up to strange cars at the dog park. If anyone had actually been in them it would have been embarrassing.

I got in the store and got a cart. I know Walmart and knew what I needed. The problem came when I had to read what was in the cases of frozen foods.

Now, sticking your nose on boxes of frozen meals so that you can read them is probably frowned upon by health officers. We won’t even discuss the possibility of getting your nose stuck! So, I did a little Radical Acceptance (DBT concept) turned my mind (DBT alert here!) and got out my near point clip-on magnifiers. Sigh.

clipons
These are my clip-on magnifiers. They look very much alike but the one on the left side is for looking at things close (called near point) & the other is for looking at things farther away (far point).

Turning your mind is a DBT concept that says acceptance of a problem does not happen in one fell swoop. Shazam! I accept that I am visually handicapped. Uh, no. Acceptance happens over a series of decision points. I did not get my clip-ons out at Staples. I did not accept that I needed them and turned away. Bad decision. In WalMart I decided I needed to turn towards the truth and accept that I needed the help. Sort of bite the bullet – a dozen times a day if necessary.

Acceptance happens over a series of decision points. I didn’t use my clip-ons at Staples but I need to use them at Walmart.

OK. So I have two pairs of really funky looking clip-on magnifiers. One for near and one for far. Let me tell you, people stare. They especially stare when I flip them up and it looks like I have…what? Antennae ?

At school I have been working on the problem by having class meetings. “This is why I look stranger than usual. ” “This is what this is.”  What am I going to do at WalMart? Put it on the PA: “Walmart Shoppers, Please do not stare at the strange woman presently in frozen foods.” ?

So, I put on the clip-ons and people stare. So be it. I was able to use the credit card machine. Score.

I even put on my far point magnifiers to find my way across the parking lot. Technically not supposed to do that. They are actually for TV viewing and you are supposed to be stationary. Having everything magnified messes with depth perception. However, I was able to find the car and did not run into anything.  Besides, the far point magnifiers make me undershoot, not over shoot. I reach for something and it is a foot beyond where I thought it was. All sorts of new problems. Sigh.

I used my far point magnifiers in the parking lot and did not run into anything.

I also took my far point clip-ons with me on my second new me first. I rode my bike! To get to the trails I use, I have to cross two fairly major roads. I “turned my mind” towards acceptance of my limitations and walked my bike across the roads. Did not want to but I wanted to be roadkill even less. Used my far point clip-ons to check for traffic. If the drivers stared, I could not see them.

Written March 2016. Reviewed September 2018.

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