Macular Degeneration and Me

Low Vision and High Hope

The Llama and the German Shepherd

For several months I’d been experiencing loss of facial recognition, especially if the person was in a darker room or had sunlight behind them.  The first time it happened I was stunned, and then disoriented.  An odd feeling for sure.  Then I had to figure out what to say to the person I didn’t recognize.  After the second time I got more comfortable with my explanation and found most people to understand.

The other day I took my dog out for a walk and when I got to the top of the driveway I noticed a Llama and a German Shepherd standing on a lawn a few houses down the street.  My first thought was what an odd couple to be on our street and then, could this be another variation of a  facial recognition disability?  On the other hand what if we did have a strange dog wandering around  the neighborhood?  Safety won the day and we headed back into the house.  Inside, I grabbed my binoculars and perhaps you heard me laughing.  The llama was a newly installed set of white posts and the German Shepherd was the lower trunk of a tree.

In an effort to understand what was happening to me, I read a number of articles about facial recognition disability as it applies to macular degeneration.   Here’s a short description – the brain directs the eye movement in scanning and fixation (the ability to maintain your gaze in a single direction).  People with macular degeneration and some other diseases lose the ability to fixate on the internal features of a face – the eyes, nose and mouth. Their eye movements are different than those with normal vision also.  There is much research going on about this including paying attention to specific internal features and the use of eye movement control training

However my incident with the Llama and the German Shepherd seems to be the blurring of my central vision as my rods and cones die off as well as color loss and more drusen occurring in my right eye.

At a recent low vision exam at NABA I learned about several new products designed to help me see things at a distance. The first is a pair of MAX TV glasses – hands-free, head-mounted, each eye adjustable glasses perfect for watching TV, bird watching, llama checking or sporting events with a 2.1x magnification.  Priced a bit over $100 they are an excellent choice for me.  You can find these and many other products at Eschenbach.

One of the things I’m learning is the amount of new research and products that are on the market or in testing for people with low vision.  It’s almost a full-time job to keep up with what’s out there.  In the next few months I’m considering a huge shift in the focus of this blog.  I’ll keep you posted about all of this but for now let’s remember to laugh at some of the adventures we have.  ‘Til next time.

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2 thoughts on “The Llama and the German Shepherd

  1. Sammie Jaworoski on said:

    I was recently told I have macular degeneration. After caring for my mother, who also had macular, I know what is in store. I am having a very difficult time trying to get from one day the next. Can’t seem to think about anything but what will I do when I can’t see? I also have hearing problems and wear hearing aids. I am so scared. My husband is a loving man and tells me constantly “we will get through this”. I am 68 years old and my mother was 80 when she was diagnosed . I thought this was going to be my time of life but now I wonder. Any thoughts? I am desperate.

    • Thanks for reading my blog and thanks for writing. Without a doubt, living with macular degeneration is not easy but you already have the first best thing you need – a loving, caring, kind husband (family). Another thing bound to help is a good or crazy sense of humor. A few thoughts for you: first, get as educated about the disease, research, and visual aides as possible. There are a few listed on my blog. Secondly see if there is a Eccentric Viewing Technique therapist in your area, read up on it (there is info on my blog) and then ask your primary doctor or ophthalmologist for a script to learn this valuable technique. My greatest fear was not being able to read and after learning this technique I know I will always be able to read, differently perhaps, but I will be able to read.

      The therapist also visited my home and helped identify areas I would have trouble with (lighting, cooking, walking, etc) and then used a number of aides to mark things I couldn’t see well, yellow tape on the edge of stairs, all kinds of things that have really helped. All of this was covered by insurance but do check with your own company.

      Secondly, check to see if there is a low vision specialist in your area who does comprehensive vision screening (this is a specialty service – not just any optometrist is certified as a low vision specialist). I found mine through NABA – Northeast Association for the Blind at Albany. These specialists have access to different type lenses and can provide lots of information on assistive devices for the home.

      Third and REALLY important – get lots of help understanding lighting – all kinds of lighting – overhead, task, hand-held,etc. The better the lighting the less stress overall and the better for the vision.

      I am also in the process of researching a product called eSight (http://www.esighteyewear.com/) for my blog. Very expensive and not yet covered by insurance but I think it holds high possibility for those people who may lose much of their central vision and become legally blind.

      And finally do not lose hope, don’t give in to negative thoughts (yes I know how easy that is, been there, done that but it really doesn’t help at all), develop a small group of people you can talk to about what you are experiencing and I will keep you in my thoughts and prayers.

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