SupportSight Livingston

Next Seminar: April 12, 2008

Former Chathamite unbowed by eye disease

Reprinted with the permission of The Chatham Courier, Karen Utzinger, Editor

By Karen Utzinger

CHATHAM - Amidst three informative doctors who spoke about Macular Degeneration at St. Barnabas Medical Center on Saturday, a former Sunset Drive resident, Mary Elizabeth Roeder, eloquently related how to cope with the debilitating eye disease. This energetic great-grandmother has had it for years and has a decidedly upbeat attitude on how to deal with its numerous challenges.

Macular Degeneration is the leading cause of vision loss in adults over the age of 55 and, according to Lea Bramnick, executive director of the Macula Vision Research Foundation, which arranged the seminar in conjunction with the retinal specialists, "Macular Degeneration is the disease of the 21st century with the graying of America."

Close to 200 people, mostly sufferers of the disease and their family members, listened intently to the two-hour presentation about the affliction that robs a person of his central vision, leaving only a modicum of peripheral sight. According to Dr. Francis Cangemi, of the Vitreo-Retinal Associates of New Jersey, "The macula is the visually sensitive part of the retina or the inner lining of the eye." When it is damaged, it cannot send a picture to the optic nerve, which is basically "the art of seeing."

He explained the dry kind of Macular Degeneration is not as severe as the wet kind where "new blood vessels grow behind the retina. The retina is lifted out of place and bleeding causes the development of scar tissue." He went on to note risk factors for the disease: being female, a family history of it, hypertension, exposure to excessive sunlight without sunglasses that block UV rays, and smoking cigarettes can be major factors.

Dr. Eric Kanter of the Retina-Vitreous Consultants in Livingston and Morristown, who, with his partner, Dr. Steven Cohen and the Foundation, sponsored the seminar, noted that in the next year, two new drugs are coming out and, with FDA approval, will "stabilize and help improve" the disease. He reported the drug companies are "sinking billions of dollars in (research for) Macular Degeneration." He discussed steroid treatments, stem cell research and laser treatments to prevent further deterioration of the retina.

His partner in the Retina-Vitreous Consultants, Dr. Steven Cohen, spoke on vitamin therapy and the National Eye Institute's AREDS study, which showed concrete evidence that high dose vitamins could help certain forms of the disease. Dosages of vitamins C, E, Beta Carotene, zinc oxide and copper were recommended but only under a doctor's guidance.

Mary Betty Roeder spoke not about the hard facts of the disease, but how she has personally dealt with it. When she was diagnosed, she said, she said she knew she could "sink or swim. I chose to swim," she said emphatically. The loss of sight is devastating and a period of mourning follows. A victim goes through denial, anger and then despair and depression. She said during this period she realized she had to change the way she thought about doing everyday chores and living her life. Once she came to that conclusion, she began to cope with the problems she faced living alone with no help. She joined a support group in the Philadelphia area where she now lives and monitored a hot line for people with problems relating to the disease.

In awkward social situations, she purports telling people you have the disease and asking the person's name. She laughed that a benefit is you never have to be embarrassed about forgetting someone's name. She said she wondered how to do her hair and put on makeup. She said she now feels her face and the contours and works from there. "You can do almost anything," she said, "just differently." Two things she cannot do is drive and read.

Banks have Guideline checkbooks with larger prints and yellow raised lines. There is only one check to write, she noted, if you only use one credit card. "Get rid of the rest," she suggested. She gets her money at the bank all in $5 bills and keeps ones folded in her change purse. Let the cashier pick the change out of your hand, she said, he won't rob you.

Other practical ways to deal with not being able to see include pinning socks together so they don't have to be sorted in the laundry, marking the number one on the phone and practicing the numbers. Measure things not with a yardstick but the old-fashioned way, with the cubit measure, from the elbow to the middle or index finger. "You can buy bathroom mats, lampshades and furniture that way," she noted.

Mary Betty uses many of the visual aids available for visually impaired people, including a white cane, a computer that talks, a talking watch, books for the blind, a special machine that magnifies pictures, bills, or the like to a size that is many times the original. She utilizes taxis and Care Sharers (volunteer drivers) for car rides when she needs to go someplace.

This inspirational widow says she is able to cook (with marked dials), entertain and even play bridge. She noted when one sense goes, another becomes more acute. Her memory is much better, she noted, now that she has to remember all the cards that have been played in a bridge game after her partner tells her what they are.

She said she learned a lesson long ago that one should " smile, it doesn't hurt a bit, and it doesn't cost a penny." She concluded, "Adversity comes to all of us and we should teach our children to live with it." A warm ovation from the audience followed the conclusion of her talk.

Lea Bramnick, The Foundation director, noted the Macula Vision Research Foundation, West Conshohocken, Pa., has given six and a half million dollars to prominent Macular Degeneration researchers. She says 100 percent of each dollar goes to research, public education and support. The founders, Herb and Karen Lotman, underwrite all administrative costs. Sixteen support sites have been established all over the country and they hope for four more by June. The Foundation works with exceptional doctors in each city, she noted. For more information about the Foundation and its works, log on to www.mvrf.org or call toll free 1-866-462-2852.