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Macular Degeneration has Improved Dramatically Due to Study


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Macular Degeneration Treatment: Low Vision has Improved Dramatically Due to Study

By SUE SMYSER, Features Writer

Today June Simmons is driving a car and doing things she thought she never could do again. Simmons of Mattoon has macular degeneration, and during the last few years her failing eyesight had robbed her of doing many of her favorite things. But all that began to change after she became involved with a clinical trial at the Midwest Eye Institute in Indianapolis with Dr. Thomas A. Ciulla, who specializes in macular and vitreoetinal disease and surgery.

Simmons says she used to paint pictures of flowers and old barns. Now she feels like she's just about ready to try that again. But about five years ago it was a different story. She wasn't seeing things clearly. In fact, through her left eye, parts of the picture were missing altogether.

"Things weren't shaped right," she said. A visit to the eye doctor brought a diagnosis of macular degeneration, and she was told to see a retinal specialist. "It was in my left eye first and because there was bleeding, it was wet macular, as opposed to dry macular," she said.

The retinal specialist advised her to have the offending blood vessels cauterized, a process called photo dynamic therapy. This stopped the bleeding temporarily. "The treatment would last three months, then I would go back to have it done again and again and again," she said. "But it didn't help my vision any."

Macular Degeneration Low Vision

Also at this time her husband became very ill and was hospitalized. After one particular visit with him, she left to go home. "My right eye was perfectly fine when I went home and went to bed, but the next morning ... I could not read the paper," she said. "Overnight this started in my right eye!"

She began having both eyes treated with cauterization, but while the bleeding stopped, it did not bring back her sight. "It was depressing," she said. "I love to read. I love to drive and oil paint. All of the sudden I can't do these things any more." She also roots for the Green Bay Packers and enjoys watching their televised games. But if the plays got very intense and she wanted to really get into the game, she wore some vision-enhancing glasses, which work much like binoculars, with wheels to turn on the side of each lens.

In addition, she was having trouble recognizing people when they spoke to her. "People looked like a black blob. I went to the mall and people would say 'Hi', but they had to get up very close before I could tell who they were."

Simmons said her mother lost her sight and she wondered if her condition was genetic. But, she said, she would much rather lose her hearing than her sight. "To lose your sight is very depressing. I didn't want my family to know just how bad I was (feeling)," she said. "Sometimes I would go in the bathroom and turn on the shower or just run water and bawl. I didn't want him (Barney) to know."

Everything began to change for her when she heard on TV about a new drug being tested for macular degeneration. "I got on my computer and ... found something about a clinical trial and I got ahold of some of the companies." Time after time she was told she wouldn't be a candidate because she was participating in the photo dynamic therapy. Finally, she spoke with Jackie Wheeler, registered nurse at the Midwest Eye Institute and coordinator of the volunteers in the program. She was told to come in for an exam to be considered for the study.

Macular Degeneration Low Vision

But last September, during her first visit to the eye institute, she didn't hear the words she had hoped to hear. "Dr. Ciulla looked at my eye through a light and said, 'I don't think there is anything we can do for you.'" His words hit her like a ton of bricks, and coupled with the stress of caring for her husband, she said this was nearly more than she could take.

But just as she thought she might as well go home, his next words brought hope. Dr. Ciulla had pictures taken of her eyes and after he looked at them, he came back grinning. Ciulla found one spot that he thought could be treated. "I think we can do it," he said.

Simmons believes that just being accepted into the program was a miracle. "There are 168 volunteers being accepted nationwide. Out of them, I got the last slot. It was the Lord's miracle for me."

As part of the study, Simmons travels to the Indianapolis clinic regularly to receive an injection into her eyes. Simmons said none of the participants in the study are supposed to know if they are getting the actual injection or a placebo. "But I'm 75 and I've been around long enough to know this is not my imagination," she said. "It don't take a rocket scientist.

"When I went there one year ago, the vision in my left eye was 20/300. One month ago, it was 20/32. Every month it gets better."

Her doctor agreed, saying she "is having phenomenal results."

There are risks involved with the study, including infection in the eye, the possibility of losing an eye or receiving a retinal tear. "But I thought if this is an FDA-approved (study) to try on humans, the Lord's riding with me. I'm not going to worry."

She has one more year to go before the study is over. Simmons still uses some vision-enhancing glasses and a tape recorder to listen to books instead of trying to read, but she says her vision has improved so much, it has lifted her spirits. "The bleeding has stopped. I think I can almost take up painting again."

To help ease the burden of vision loss ActiveForever.com provides a variety of Low Vision Aids for those suffering from macular degeneration or other forms of vision loss such as Magnifiers, Talking Products, Big Button Remotes, Magnifying Mirrors, and Lamps.

If you need magnification to read the newspaper, books, or magazines you'll love our latest edition to our low vision catalog. The Max Digital Handheld Magnifier is a powerful, portable, hand-held digital magnifier mini CCTV designed for people with low vision. The size of a computer mouse, the Max Digital Handheld Magnifier connects directly to any TV or monitor in seconds, allowing you to read newspapers, magazines, recipe cards and even medicine labels. It provides an amazing powerful magnification up to 30x. This small magnifying CCTV is small enough to fit in your purse or bag, so you can take it with your wherever you go. This exciting new electronic magnifier is available in two models: Full Color or Black and White.

Macular Degeneration Low Vision

Source: Journal Gazette and Times-Courier.

 

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