I have the wet type of macular degeneration. That means that my eyes bleed. The retinas decide that they need more blood vessels, so they just go ahead and grow them. The blood vessels leak blood and ruin your center of vision and cause blindness. I’m legally blind. In basic terms, that means I can’t read the chart on the doctor’s wall. Don’t worry. It’s not all gloom and doom. I can see well enough to walk around in the house without bumping into anything.
I thought I would write down some of the things we have learned and share them with anyone who might be starting out with this problem. There is a lot of help out there, but it takes a while to find it.
With me, the disease took 2 or 3 years to develop. I knew there was something wrong but didn’t know what. I had cataract surgery on one eye, and a couple of years later after I had learned of the macular degeneration, I had cataract surgery on the other eye.
As you lose your vision, you learn to depend more on your other senses and you start looking for aids. When my vision was at its worst, I depended on memory and muscle memory. If I set my coffee mug down, my body knew just where to reach for it. Touch was important, as was counting steps from one place to another.
As my vision improved a little, I noticed the way light was reflected from some objects. It made it easier to find my coffee cup or water glass. A big step forward was made when I realized that light was being reflected off my pills. I keep my pills in one of those plastic 7-day pill boxes. I would open the little lid and shake the pills into the palm of my hand. Picking up the pills from my palm was sometimes difficult because I couldn’t see them, so I would chase them around my palm until I sometimes knocked them on the floor. One day, the ceiling lights were on, and I saw the light being reflected from each pill. Duh! Now, I always use the ceiling lights.
A sharpened sense of touch became important. I use a Phillips Norelco electric razor. That’s the one that’s got 3 heads. The shaving heads got dull, and my daughter, Terri, ordered replacements. I couldn’t see well enough to change them out. Fortunately, my son-in-law, Steve is pretty good at that kind of stuff, and he changed them for me. The next time the heads got dull, I figured I should try changing them myself. Each shaving head consists of a flange and a cutting blade, so all together, you have 6 pieces plus the retainer to deal with. To give me a contrasting workplace, I put an 8 ½ x 11 inch sheet of printer paper on my desk and placed the parts on it. The razor is a marvel of simple mechanical design, and I expected to conquer the job immediately. Every time I got most or all of the pieces loaded in, while putting the retainer in place, I would bump the thing and scatter the parts all over the desk. A couple of times, I ended up with parts on the floor. Since I couldn’t see, I had to lie down on the floor and rub my hands on the carpet until I found the pieces. That first job took me 2 hours to complete. Having done the job several times now, my record time was 7 minutes when everything just fell into place perfectly, and I didn’t bump it and screw it up. My average time now is probably 15 to 17 minutes.
That’s enough for now. Later, I’ll tell you about the medications and some of the low vision equipment available.
Dave Thomas
6/29/2023