as of 5-20-2003
I was diagnosed with macular generation at the age of 45 I've been seen by the VA Hospital retinal specialists and several civilian retinal specialists They cannot seem to agree on an accurate diagnosis. Some say Best's Disease, some have said that I have an unspecified type of drusen affecting my macular region.
All I know is that whatever the epidemiology of my eye "disease" -- it has drastically changed my lifestyle and put a serious damper on my personal freedom.
Date: Sun, 2 May 2004 11:48:48 -0500|
Subject: Interesting article from Arkansas Online
Thomas "Eddie" Rutherford of Malvern, with the help of his wife, is learning how to adapt to blindnessBy Wendy Ledbetter
PROMOTIONS CONTRIBUTING WRITER
For Thomas Edward Rutherford, the stages of blindness were difficult to accept. In fact, when his vision began to be a real problem, he hid it from everyone, including his wife, Laveda. When he could no longer deal with it alone, the doctors' visits began. More than five years later, he's coping well and looking forward to the future with renewed enthusiasm.
Tom has Best's Disease, a form of macular degeneration. Basically, there's a dark spot that covers most of the macular portion of the retina but often leaving a small area of peripheral vision. In Tom's case, he has limited peripheral vision in the upper right eye and the lower left, making it difficult to focus. He depends more on the right eye and has begun using a patch over his left eye when he reads. Even though legally blind, he can still focus well enough to read with the use of a magnifier, but the strain limits him to only reading for a few minutes at a time. With the aid of enlarging programs, he can work on the computer for about 20 minutes before the strain forces a break.
Explaining the extent of his low vision is somewhat difficult, but Tom said he believes that's a problem for most people with blindness.
"It's hard for people to understand that you can still see, but you can't see well enough to do things."
When he was about 40, he began to have "a slight distortion." Bifocal glasses were prescribed, but Tom still didn't realize there was a more serious problem. Within five years, he began to have major distortion. It wasn't immediately known that Bests Disease had taken hold, but after the diagnosis, he went out to find a cure.
"Everytime we'd hear of something different, we'd go," Laveda said. But there is no cure and the couple is learning to get on with their lives.
Tom - known as Eddie during his youth in Gurdon - and Laveda live in Malvern near their family, including grandson Cody. For the most part, Tom maneuvers around their home without apparent effort because he knows the house so well. But other places is another matter entirely.
"I get panic attacks," he said. "I get lost. I have no depth perception so I can't distinguish curbs or steps." And a shadow can appear to be a step, or can hide a step.
Tom has just returned from three weeks in the Southeastern Blind Rehabilitation Center, a low-vision clinic in Birmingham, Ala. The federal program is aimed at helping veterans cope with blindness. At the clinic, Tom learned skills to help him get on with his life, including how to use a long cane so that he can maneuver in strange places without stepping off in holes or walking into something. He probably would have learned to use the cane eventually, but the clinic put the entire issue into perspective. "Everybody there had the same problem," he said. "It's not just a 'me' problem. I was learning alongside people who are going through the same thing."
Adapting to near-blindness has been an emotional journey, and Tom admits that acceptance has been a big part of learning to cope.
"I spent two years trying to look like nothing was wrong. I ended up stumbling around like a drunk."
Trying to appear as if nothing were wrong is probably what hindered his use of the long cane before his trip to Birmingham. That white cane is a symbol to the world - a sign of blindness. It's admitting the problem instead of trying to cope some other way. He has used a traditional cane for some time, partly to help with a weak leg, but partly to help him get around without the use of the white cane.
"It's a big switch to change to [a cane] that tells the world, 'Hey, I can't see.'"
But the change has offered a freedom that he hasn't had since he lost his vision. Laveda said she saw that change on the way home from Birmingham.
"I would have a hold of his arm, or he would have mine," she said. She let him know that there were steps or other obstacles in his path, when to step up or down, and what to expect as they were walking. But with the cane, he can find those obstacles on his own. And, Tom admits, expending his limited vision on the ground is "stupid." Using the cane for the groundwork means he can use his limited eyesight for other safety issues - watching for cars.
To prove the usefulness of the cane, the clients at the Birmingham clinic were fitted with glasses that eliminated all their vision and sent on an errand across the hospital grounds. Tom found his way the first time and realized that, even without any vision at all, he could get around.
"After that, I learned what a good thing that cane can be, and I started practicing more - relying on it more."
The cane wasn't the only revelation from the clinic. Tactile training classes allowed Tom and the other clients to use saws (specially fitted with safety devices), miters, routers and other equipment that encouraged them to use their hands without using even limited vision. Tom returned with a belt, a holster (for his long cane) and a copper etching of the Lord's Supper, complete with frame.
Maybe the most important classes for Tom were those dedicated to coping with everyday situations. Before the trip to Birmingham, Laveda dispensed his daily medications. Two of them looked very similar and Tom had gotten them mixed up at least once and the pills tend to roll off the counter. A simple non-skid mat solves the rolling problem and the tops of the medications are marked with felt pads in varying patterns so that he can identify them with a touch.
Pouring a cup of hot water doesn't seem like a big deal to most people, but Tom said he often ran the liquid over the top, especially if it were too hot to check the level with his finger. But now he hangs a tester over the side with two prongs about an inch into the cup. The prongs "beep" when the liquid reaches them, providing an easy point of reference.
Other gadgets help him get along independently. A talking calculator, a talking alarm clock and monocular to read other things, like signs during travel, mean he can do for himself instead of asking for help. Laveda said the talking wristwatch was a great addition because it meant he no longer had to ask the time "every half hour."
Reading has always been an important part of Tom's life. He said before his vision deteriorated to the point that he could no longer stand the strain of focusing on words in a book, he spent a lot of time reading - often a book a day. His personal library is filled with paperback, covering a wide range of topics. Reading has been replaced by audio books but Tom said it takes days to finish a book, especially if he falls asleep in the middle of a tape and has to rewind.
In his home office, he has a magnifier on a stand, equipped with a light, that helps him read. He also has software, Zoom Text, that offers audio prompts. For example, the program tells him where the mouse curser is on the computer screen, saving the amount of time Tom has to actually focus on the computer screen and lengthening the time he can spend working on projects without increasing his eye strain.
The next step will be another trip to Birmingham later this summer for training on voice recognition software for the computer. A writer at heart, the software will enable him to continue to write.
In a moving personal essay, posted on his Web site, Tom talks about the jolting awareness when the disease finally began to over take him.
He writes, "At times I wistfully wonder what I'll do when I can no longer pursue the things I love doing the most: hunting, fishing, driving, reading books and magazines (with wondrous printed words, not Braille, and illustrations), and most of all just observing nature's beauty. I often wonder what I will remember as the last, non-distorted image of this world." For the Rutherfords, there have been some immediate changes at home.
Tom once took care of the minor car repairs, changing the oil and other small details that now require a trip to a mechanic. He did all the yard work, mowing and trimming the hedges, but the loss of vision made it dangerous for him to operate a trimmer and he can't distinguish the curb so mowing is also out of the question. He and Laveda say they "traded chores," and she took care of the outside.
"Her answer was to cut the hedges down," he said with a laugh. It's that laughter that marks the change in him, evident after his stay in Birmingham.
"Before he went, there seemed to be lots of things he couldn't do," Laveda said. "Now he can do just about anything he wants."
The things he can do are becoming more and more important. He plans to go back to school to finish his bachelor's degree and then on for his masters. With the aid of digital tape recorders, voice recognition software for his computer and the new-found determination, the only thing he needs to get back to school is a driver, and Laveda has taken on that chore for the coming semester.
This summer, he'll hopefully head back to Birmingham to continue his training.
But now that the time has come, he's forging ahead. The white cane is a symbol, recognized as a sign of vision impairment. But for Tom, it's also a sign that he's moving ahead, avoiding the potholes and looking forward to tomorrow.
This story was published in the Arkansas Democrat-Gazette, Sunday, May 02, 2004
Neither dry nor wet AMD causes any pain. The most common symptom of dry AMD is slightly blurred vision. You may need more light for reading and other tasks. Also, you may find it hard to recognize faces until you are very close to them. As dry AMD gets worse, you may see a blurred spot in the center of your vision. This spot occurs because a group of cells in the macula have stopped working properly. Over time, the blurred spot may get bigger and darker, taking more of your central vision.
People with dry AMD in one eye often do not notice any changes in their vision. With one eye seeing clearly, they can still drive, read, and see fine details. Some people may notice changes in their vision only if AMD affects both of their eyes. An early symptom of wet AMD is that straight lines appear wavy. This happens because the newly formed blood vessels leak fluid under the macula. The fluid raises the macula from its normal place at the back of the eye and distorts your vision. Another sign that you may have wet AMD is rapid loss of your central vision. This is different from dry AMD in which loss of central vision occurs slowly. As in dry AMD, you may also notice a blind spot.
Anatomy of the Eye.
Description: Normal vision.
Description: A scene as it might
Another example of what some AMD people see
Just One Sip of CoffeeA Personal Narrative
Thomas E. Rutherford
One sip of coffee changed my entire life. I have had many life changing events throughout my life (marriage, fatherhood, enlisting in the Marine Corps and then in the Army, being a law enforcement officer, editing several newspapers and magazines, countless surgeries and more near-death experiences than I care to remember). But none have altered my very existence as much as that one harmless sip of coffee.
I drink the brand of coffee that is good to the last drop. But six months ago I took an earth shattering sip and that last drop ended up all over the carpet in my office along with my favorite green and black Marine Corps skull head coffee mug.
It was a moment I will never forget. A moment forever etched in my memory. I had been working for nearly six hours straight on writing project. The only light in my office was the glow from my computer's monitor. Cigarette smoke wafted gently, almost eerily, throughout the room.
At 3:45 a.m. I had taken a break to stretch my legs and back. My eyes were watery from strain and smoke. I needed, no craved, caffeine to stimulate my creativity. I filled my cup before the coffee maker had completed its brew cycle. Fresh cup in hand, I returned to my darkened dungeon of an office.
I returned to my seat in my favorite typing chair and placed the hot cup of coffee near the keyboard. Its steam joined the cigarette smoke, enhanced the eerie fog-like effect in my office, and helped maintain my marathon writing mood. Like a human extension to my computer I reconnected to my keyboard and pounded out nearly three pages before the coffee cooled enough to drink. I stretched both arms before grabbing the cup with my right hand and lifting it to my lips while proofing my latest entry. As I tilted the cup for that first sip, it momentarily blocked my right eye's view of the screen.
I thought I was losing my mind or at the very least that I had taken one too many muscle relaxers. What I saw in that brief glimpse of the screen, with just my left eye, was totally unexpected. I lowered the cup and the screen again looked normal. I thought maybe that I had gotten a super caffeine rush or just an extreme spurt of imagination.
I sat dumbfounded for several hours (probably just mere seconds) before taking my right hand and covering my right eye. Again, the distortion was incredible. It was like looking into a fun house mirror. Everything was distorted. I tried covering the left eye and everything appeared normal. With both eyes uncovered everything appeared normal. I don't know how long I sat experimenting with my eyesight. I covered, uncovered, blinked one eye, then the other, and then both eyes simultaneously. I tried turning away and then snapping my head back to the screen suddenly to see if I could maybe see something that I was missing otherwise.
I couldn't sleep. I just paced through the house while my wife and daughters slept. At 8 a.m. I got an emergency appointment with an ophthalmologist who quickly diagnosed my condition. I was in the early stages of macular degeneration, a disease that normally strikes persons age 65 and older. He reassured me that it might not be as bad as it seems since there are new retinal surgical techniques to excise the lesions this disease causes. He did tell me, however, that current surgical techniques could not fully restore my damaged vision--only halt its progress.
The Friday before the 1999 spring semester finals, I underwent fluoroscopy of my left eye and was told that it might take years before the disease caused me anything more than distortion. I was also told that, left untreated, the disease would eventually destroy my central vision and leave me legally blind in my left eye. It took me several months to cope with this new information. I even practiced with a patch over my left eye (when no one was around) to get used to my eventual left eye blindness if surgery didn't stop the condition from progressing.
I had just gotten used to the idea of possibly losing sight in my left eye when disaster struck again. I began noticing that my night vision was greatly reduced. Also, car and streetlights at night had a halo effect and severely hurt my eyes. This happened midway through the 1999 fall semester and I returned to my retinal specialist a month before my next exam was scheduled.
The bad news was nearly more than I could bear. Not only had the disease progressed to my right eye, but also the main lesion in my left eye had progressed to the central macular region. Surgery now would excise the legion but the cure would be worse than the disease. It would completely destroy my central vision immediately. I elected to let the disease run its course in my left eye. The lesion in my right eye has not developed towards the center region yet, but more than likely will. However, it is too close to the central region to be excised by surgery without immediately destroying vision in this eye also.
I became completely depressed and withdrawn for nearly three weeks. During most of that time I didn't think I would even be able to function when (not if) my vision completely deteriorates. I dropped one course (Discrete Math) because I had fallen too far behind to catch up. My grades and attendance suffered in my remaining classes. Then in the 2000 spring semester I began to have blurring vision when I did any close up work for more than fifteen to twenty minutes at a time. Another trip to my ophthalmologist indicated that I am experiencing the early symptoms of glaucoma and the pressure in my right eye was extremely abnormal. I began steroid injections, which seem to have slowed the two lesions' progress.
By this time I had become increasingly depressed, yet hyperactive, and developed insomnia. A twenty-pound weight gain (a side effect of the steroids) pushed my blood pressure extremely high. At this point I was ready to quit school and just completely retire and that is exactly what I have done. Due to my physical disabilities I have developed an anxiety problem and now have trouble just being around more than a few people at a time.
Coping with this disease has been the greatest challenge, and I do see it as a challenge now, that I have ever faced.
I have taken a great interest lately in the development and use of voice recognition computer software. I've been reading as much as I can, although my eyes blur out after twenty minutes and I have to take an hour or longer break before I can return, but I do return. I have also developed a new appreciation for audio books and I rely more and more on family and friends to help with my typing and studying. For me, this is the worst setback of all. I have always been an extremely independent person who never relied on anyone. Therefore it is hard to have to ask for help from my family when I can't accomplish something on time without it. Yet this has given me a new appreciation for the love and assistance I have received from my family since this ordeal began.
There are a million and one things I would like to see and accomplish while I still have my eyesight--things that I won't be able to see or do when the disease finally robs me of my central vision in both eyes. The past few months I have caught myself admiring the beauty of the world around me. Seeing things I had previously failed to notice or had just taken for granted. I never realized the true beauty of nature until now. Each waking day provides another feast for my eyes. They devour everything within sight and make me marvel at the spectacular panorama of the world around me.
At times I wistfully wonder what I'll do when I can no longer pursue the things I love doing the most: hunting, fishing, driving, reading books and magazines (with wondrous printed words, not Braille, and illustrations), and most of all just observing nature's beauty. I often wonder what I will remember as the last, non-distorted image of this world.
I think the things I will miss most about seeing the world around me is the sight of my daughters', my wife's and my grandsonís faces each every day, faces that exude love and beauty. I have learned to appreciate the forty-five years of full sight I have thus far enjoyed. Oh, and before I forget, I still haven't cleaned up the coffee stain on my office carpet either. Somehow even this has a certain charm, character, or beauty, in and of itself.