Highlight: Dry Macular Degeneration Clinical Trials 1/7/2017

There is no current treatment for dry AMD.  There IS encouraging research and for those of us who subscribe to the newsletter from WebRN-MacularDegeneration, we just got a link to a page that discusses ‘a sampling’ of the studies including for those with geographic atrophy which is one of the advanced forms of AMD.   Several of the studies are looking for participants.

Click here to go to Dry Macular Degeneration Clinical Trials.  Number 3 is the study that Sue is waiting to participate in.

WebRN-MacularDegeneration is a great website & I recommend that you subscribe to the newsletter.

Fairy Tales

The more you talk (and moan and complain and lecture) about AMD, the more people you find who have it. I guess that is the power of advertising.

Anyway, today one of the teachers sat down across from me at lunch. She had just been diagnosed with dry AMD. Her optometrist told her that her eye was ‘drying out’. What the hell????? [Lin/Linda: with wet AMD, there can be a ‘drying out’ especially after injections but not with dry AMD.]

In my usual ‘understated’ and ‘subtle’ fashion I told her either he did not know what he was talking about or he had given her the ‘idiot’ explanation. Really.

Nothing ‘dries out’ in AMD. Old. Yeah. Visually impaired. Yep. Stupid? No. We really can handle more than the fairy tale explanations.

I put her on to this kickass website I know ?. She is an intelligent woman and can handle ‘real’ information!

Another thing she said was that she had noticed my eyesight had gotten ‘better’. Like I said, her doctor had obviously given her the fairy tale version of AMD because we all know there ain’t nuthin’ getting better about it!

It made me wonder, though. What exactly had she noticed? I know several of my doctors had said performance on an eye chart will ‘improve’ because patients memorize the chart. See the thing 600 times and you almost can’t help but memorize it. Maybe they should have A and B versions? But I digress… Is it possible she has seen an improvement in my functional vision? You always hear practice makes perfect. Have I been becoming a more ‘perfect’ visually impaired person?

Since I tend to be wary of anything that promises you the world and costs the proverbial arm and leg, I ignored the visual training programs that I found online and honed in on some things that were called perceptual learning and sensory efficiency. These are things they teach to kids, so I should be able to handle them. Also, the one website had links to suggested activities for no cost. That is a synonym for one of my favorite words: free!

Sensory Efficiency by Carrie Willings listed all sorts of ways to enlist your other senses in an effort to ‘see’ but it also talked about some of the visual perceptual skills you learn about in educational psychology but have not really thought about in a while. To wit: Would more purposeful visual scanning be useful? Am I doing it? Am I sharpening my visual discrimination skills and looking for detail more purposely? What about visual closure and figure-ground? Visual memory? Maybe getting some ‘kids’ games’ and practicing these skills would help? Maybe I have been unconsciously paying better attention to them since losing sight?

Like many things in life, I don’t have the answers to any of these questions. I know I have become more cautious when working visually. I try to see differences and sequence mindfully – a word with many uses!? It might be helping.

OK. Right now it is after bedtime and I have found several interesting things to read – including an article on reading – and try to digest. I will get back to you about this visual perceptual business. Dunno if any of it will help but I doubt it would hurt. Continue reading “Fairy Tales”

In The Beginning

February 2015

I am a 61-year-young woman. Life is good. I am at the top of my career. I am active. People tell me they want to be me when they grow up.

February 2016

I am going blind. I’m terrified.

June 2015

I am driving down Route 11 with the windows open. Something gets in my right eye. No biggie. Wipe it out. With my right eye closed, the car in front of me disappears. Oh shit. Open the right eye again and the car in front of me is back. Close the right eye again and it disappears. There seems to be a problem here.

A call into my friendly neighborhood ophthalmologist gets me an appointment for the same day. They think it’s something serious. After several different tests, I am given a diagnosis of dry Age-Related Macular Degeneration (AMD or ARMD).

When I was in third grade, I had a button that said: “we never guess, we look it up.” In the age of the Internet and Google, this has become one of my credos. I look it up.

We never guess, we look it up.

What I find out is that Macular Degeneration (MD) is an eye condition in which the fine focus part of the eye stops working. There is actually a more complicated mechanism behind it but we will leave it at that for now. I will visit the science stuff later.

Macular Degeneration is thought to be genetic. Looking back, I realize my father had it. It also happens more to white people than other races. It happens more in women than in men. And, thus the name. happens in those of us who are over 55. Those are the static variables. (Static variable, sounds like an oxymoron to me.)

I’m in the static variables, I am guilty, guilty, guilty, guilty. Among the lifestyle choices that are factors in AMD, not so much. I have never smoked and I am in fairly good shape. The jury is out on whether or not my history of high blood pressure has anything to do with my developing the condition.

So here I am, based on the static variables, a really good candidate.

What exactly, however, was happening in those big brown eyes?

Written in February 2016; updated September 2018

To fast forward to what Sue’s life is in September 2018, read In the Beginning – Revisited


Click here to go to a short video that explains the basics about macular degeneration

Next: The Science Stuff

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