More MS news articles for Dec 2001

Chronically Ill Mother Gets Some Help

http://www.nytimes.com/2001/12/13/nyregion/13NEED.html?pagewanted=print

December 13, 2001
By AARON DONOVAN

Esther Clay walks slowly and uses a cane. Her vision is clouded by glaucoma and her halting steps, like her quiet, slurred speech, are lacking in confidence.

Though she is just 32, Ms. Clay, who lives in southern Brooklyn, appears in many ways more like a woman twice her age, because she has multiple sclerosis, a chronic disease believed to be caused by the body's immune system attacking the central nervous system.

"I walk like I'm drunk, but I'm not," Ms. Clay said. "I get weak. I get dizzy. I just don't feel good."

People with multiple sclerosis have symptoms that vary from mild, like numbness in the toes, to severe, like memory problems, blindness or paralysis. Ms. Clay falls somewhere in the middle, said her doctor, Marshall Keilson, associate director of the multiple sclerosis care center at Maimonides Medical Center in Brooklyn.

"The future with M.S. is always uncertain and unpredictable. That's the worst part of the illness," Dr. Keilson said. "But based on statistics, it's likely that she will gradually decline over time."

Dr. Keilson said he had put Ms. Clay on recently developed medications designed to treat the causes of the disease, as opposed to earlier medications that had only treated symptoms. "We're hopeful that this will slow the course of the illness, if not stabilize it altogether," he said.

Ms. Clay, too, is optimistic, because after nine years with the disease, she can still walk, still feel her toes, still see. But she cannot remain standing or even sitting upright for long periods, and she is too easily fatigued to have a job, she said.

"Some days I have a good day and sometimes I have bad days," Ms. Clay said. "On bad days, I feel blah, I don't want to be bothered by nobody."

Ms. Clay, who has a 12-year-old daughter, Christina, receives $68.50 every two weeks in public assistance, $29 a month in food stamps, and $554 a month in Supplemental Security Income. She also receives $40 a week in child support payments from Christina's father, who lives in the Bronx.

The money allows them to pay for food and other necessities. But it only goes so far. Ms. Clay sleeps on a foam egg-crate mattress and does not have a comforter or even a sheet to cover herself. And until recently, Christina slept on the couch in the living room of their apartment in the Linden Houses, in New Lots, the only piece of furniture in that room other than a wooden chair and a blue plastic storage bin that holds the family's television.

But in October, Christina got a bed that was paid for using $254 from The New York Times Neediest Cases Fund. The Clays frequently get help from the Brooklyn Bureau of Community Service, one of the seven local charities supported by the fund. The bureau gives them access to a food pantry when they need it, and in the summer used $177 from the fund to prevent the family's electricity from being turned off when Ms. Clay could not pay the Con Edison bill.

"Our program works with parents who are experiencing problems in the home," said Carrie Sogg, a social worker at the bureau who helps Ms. Clay. "I work as a therapist and do some advocacy on their behalf."

Ms. Sogg put Ms. Clay in touch with the National Multiple Sclerosis Society, and gives her advice on how to manage her budget and take care of her daughter.

Now that Christina has a bed, she also has a place to do her homework.

Without a desk or even a kitchen table, Christina, a seventh grader at a nearby public school, spends hours each day on her bed, writing essays, improving her vocabulary, and solving math problems.

She said she wants to attend an Ivy League college, and hopes to become a pediatrician. "I want to help kids," she said. "I like kids a lot." She added, "Ever since I was 5, I have liked to play around with doctors' stuff."

When asked about her Thanksgiving, Christina said she was thankful for her health and for the food she ate that day. She said that for Christmas, she wants to get the third book in the Harry Potter series and a Nintendo GameCube.

Her mother remains upbeat about her own health. "I'm a very optimistic person. I feel that they're going to find a cure for M.S.," Ms. Clay said. "It's not going to beat me. I'm going to beat it."
 

Copyright 2001 The New York Times Company