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Living with Macular Degeneration

My mother has macular degeneration.  She’s had it for over 20 years.  She was diagnosed with it at age 40, and the doctor told her that he couldn’t be sure how long she’d had it.

Macular degeneration steals away your central vision, leaving you with only peripheral vision.  Granted, peripheral vision is certainly better than total blindness, however, your central vision is what you use to read, drive, and look at things.  Your peripheral vision does not have near the sensitivity of your central vision.  When macular degeneration has progressed a significant amount, you cannot see what you are looking at, and you cannot see in detail what is around what you are looking at. You are effectively blind.

If you think of looking at your child’s face, and seeing only a blur, or worse, a fuzzy grey circle, that is what someone with macular degeneration sees.  Look at a book, or your computer screen, and focus your eyes on one place.  Keeping your eyes there, try to read what is five inches away.  Your peripheral vision just can’t take the place of your central vision.

Here are a couple of examples of macular degeneration:



Currently, my mom’s central vision in her right eye is mostly gone, and it’s significantly deteriorated in her left.  She can still read a little, very slowly, and not always accurately.  She can’t always tell colors precisely.  It has taken her 20 years to get here, though, and she’s been very blessed.  She started out with “dry” macular degeneration, which is almost a dry-rotting of the macula, and is very slow to progress.  In 2001, it turned to the “wet” type, in which abnormal and weak blood vessels grow below and/or through the macula, distorting it.  They leak blood, because they are weak, and this smothers and destroys the light-sensing cells of the macula.  This type is very fast, if it is not seen to immediately.

Only 6 months before my mom’s MD went wet, our neighbor’s did.  He lost his central vision completely within months.  Only months later, when my mom’s went wet, a promising new therapy had just come out.  Her ophthalmologist proceeded to aggressively treat the abnormal vessels.  Any time she noticed a new distortion in her vision, he brought her right in, and treated her with the latest therapy.  He was on the cutting edge, and he fought tooth and nail for her vision, and she was his willing guinea pig.  What did she have to lose?  If she did nothing, she was going to go blind.

Over the last year or two, the wet MD has subsided.  The dry continues, though, and its toll is becoming ever more apparent.  When you have all your vision, and you lose 10% of your light-sensing cells, you’ll probably not notice that too much (which is why dry MD can go undiagnosed for years).  When you have 30% of your vision left, 10% loss becomes much more significant.

Mom needs strong light to be able to see well enough what she is doing.  She doesn’t like to not help around the house; it makes her feel like a slug.  So we’ve been doing some things to help her help out.

One thing she does most of is washing dishes.  Unfortunately, the light fixture over the kitchen sink was not a good one for throwing light down to the sink.

Remember these old light fixtures from the '50s? They're flush with the ceiling and unobtrusive, and provide a good deal of omnidirectional light.

These old fixtures throw light everywhere.  This is particularly nice in the hallway, where we have two of these (this is one of them).  They light their areas very nicely.  We have another one in the den.  It certainly isn’t task lighting, but if you want to light the whole room up, well, it does it.  It doesn’t give the best, most attractive light, but that’s what the lamps in that room are for.

One thing these fixtures are very, very bad at is task lighting.  They will not throw their light down for you to work with.  One of these (actually larger, it’s rectangular) over the sink, with a 100W light bulb in it could not light the sink directly beneath it.  Granted, the bulb, once pulled out, had an energy saver button on it, but still — 100W, reduced slightly by an energy button, and the sink is nearly dark?

So, for Christmas, Shay and I decided to get my mom a new kitchen light.  I know… give my mom a new light fixture for Christmas so that she can continue to wash dishes for us?  How sweet!  No, it isn’t that.  It’s a means for my mom to continue to contribute to the family in a physical, meaningful way, in which she can see the results (momentarily clean sink, momentarily cleared counter, dishes ready for reuse) and bear some of the burden of work in the family.  I can tell her all I want to (and I have) that she doesn’t have to do these things to be a valuable, contributing part of the family — blindness is certainly something we can understand as a reason not to do some things!  But to her, it’s important.  Doing dishes is important, and it makes her feel important, since she’s accomplished something visible and meaningful.  If she wants to continue doing it, then that’s important to me.  Not that I’m pooh-poohing her contribution of doing dishes — far from it!  It’s a huge help!

So… off to Home Depot to see some of their pendant lights in person.  I wanted to get a pendant light because it comes down from the ceiling, bringing the light source physically closer to the task.  I wanted one that threw light down a lot more than it threw it out or up.  Then I wanted to be able to put a high-wattage bulb in it (I wanted to stick a 100-watter in there), to put as much light as possible down there.

Unfortunately, the fixtures that could take a 100W bulb were either too big or ugly.  I needed a relatively small fixture, because the sink is in front of  a window that is flanked by cabinets.  And I wasn’t getting an ugly one.

Then Shay spotted a cute little pendant, and made a beeline for it.  “Yes, it sure is pretty, isn’t it?” I said, “but it can only take a 40W bulb!”  You see, I had already admired this pendant for quite a while online, trying to convince myself that I could coax enough light out of a 40W bulb, but knowing I couldn’t.

So I was surprised when Shay (fully knowing my mom’s vision issues) replied, “So?”

“Well –”

“We can get a 40W halogen that will throw more light than a regular bulb, and put that in here.  It’ll concentrate all the light downward, too.”

“Oh… that’s right.  I did just read about some new halogens Phillips came out with because of the ban.”  And off we headed toward the bulbs.  There they were… 40W halogens that claimed to throw the light of a 75W incandescent.  So we bought one, along with the light fixture.

On Christmas day, Mom opened a gift to find an electrical box.  Deconstructed gifts are fun!  :D  Next, she opened the light bulb.  Then, a wooden plaque (to cover the hole in the ceiling that would be left by the old fixture).  By this time, she was thoroughly bumfuzzled.  Finally, the light fixture.  She almost cried, she was so happy.

Shay drilled holes in the plaque, and then it was mine to paint.  So I pulled out our box of craft paints, and went to work.

The cabinetry is a warm, but somewhat medium-dark, honey brown. I wanted to complement the color, because I didn't even want to try to match it.

I chose red, yellow, black, yellow ochre, and gold. I painted rough stripes, blending the edges of the colors into each other with my fingers. I mixed a dark brownish-red for the sides. Once I had it painted, it wasn't what i had been going for. It was a lot of very bright contrast, but it was pretty. I thought about doing a wash with some tea-colored paint in matte medium to tone things down to where I wanted them, but I was afraid to. Doing a wash is a risk. You can't be sure how it's going to turn out until it is dry. When Shay saw it, he suggested I do a wash. So... I pulled out the matte medium and the tea color, and painted over it. As soon as I laid down my first brush stroke, I knew I had guessed my paint:medium ratio incorrectly. It was too late, however, so I finished painting over it. Once dried, it was EXACTLY what I had wanted from the beginning!

The next day, Shay installed the new fixture.

The painted plaque looks great against the wood!

The fixture is just so pretty, and the light that the halogen throws from it is amazing! Mom loves it, and so do I -- it was dark in the sink even for me, and I have good eyes.

Here’s a link to the fixture at the store: http://www.homedepot.com/Kitchen-Kitchen-Lighting-Pendants/h_d1/N-5yc1vZbn5w/R-202828247/h_d2/ProductDisplay?catalogId=10053&langId=-1&storeId=10051

Another chore she does a lot of is laundry.  Needless to say, vision is very helpful in determining which clothes go to which person in the family.  We have two men, two women, a teenage daughter who is taller than either of the women, and a son who is working on it.  Mom, with her vision going more and more, has been misdirecting laundry more and more, and it’s been frustrating for her.  But she doesn’t want to stop doing laundry, it helps her contribute.

But what to do to make it easier for her to tell the clothes apart?

Fabric paint in primary colors.

I tried finding non-puffy fabric paint, but couldn’t.  I couldn’t get dye pens, because that would just mix with whatever color was already in the fabric.  So I got this paint, and assigned a color to Shay, the kids, and myself.  My mom will get a few things marked, and my uncle will, too, but if we clear up these four people, Mom should find things much easier.

ILoveBunnies and Bunny-Wan Kenobi were each assigned their favorite color.  I gave Shay red, and took yellow for myself.  That left the black to be used where needed.

A pile of newly-marked unmentionables and socks.

We turned the unmentionables inside-out, and I dispensed a little paint either beside or above the tag.  I spread the paint out into a square shape, giving a nice-size blob of color for Mom to see.  I rubbed the paint into the fabric so it wouldn’t be puffed.  When it dried, the paint was scratchy, and I was concerned.  But when we started wearing them, none of us noticed it.  The marking will continue into other clothes now.

Thankfully, Mom just got a new set of glasses, and it turns out that, while her right eye really cannot be helped anymore, the new prescription for her left eye has made a real difference for her!  She had gotten to the point at which watching TV was really difficult.  We don’t watch a lot on TV… mostly very old shows and very old movies.  Still, it’s fun to watch these old things together.  With her new glasses, she can make out what is on the screen.

BUT much more importantly, she picked up her Bible tonight, which had grown dusty because she could no longer read it (large print).  She found that she can read it again!  It isn’t easy, but she can read it!



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4 Responses to “Living with Macular Degeneration”

  1. ladysown says:

    oh what a blessing for your mom. I totally get it. :)

    • Miss M says:

      Thanks, Ladysown! I was hoping I was able to get that to come out right. That can be hard with things like this. :)

  2. Sara C says:

    What a great post! Found this in my google alert for “Macular Degeneration.” It’s very inspiring to know how you are trying to keep her independent, saying that it’s not about getting her to wash dishes for you but to let her continue helping the family in the way SHE wants to help. I passed this along to my assistive technology department so they can use this tips if they find themselves in similar situations with people they work with.

    • Miss M says:

      Thank you, Sara! Wow, that’s really neat, to get a visit from someone with Easter Seals who finds my post helpful. Thank you! :D

      I remember reading a novel a long time ago, in which the main supporting character was blind. She was able to choose clothes for herself each day, though, because her mother sewed little stitch patterns into them that told her what colors they were. One pattern of stitches meant red, another blue, and so on. If she was angry, she’d intentionally choose clothes that did not match.

      Who knows… that may have been the underlying inspiration for the paint pen thing I’m doing. :)