HOW & WHY
By Catherine O'Neill Grace
Special to The Washington Post
Tuesday, August 3, 1999; Page Z17
When a parent has a chronic illness, one that never goes away entirely, the grown-ups' first instinct may be to keep quiet about it and hope that the kids won't notice.
But trying to pretend that everything is normal when it's not can make kids feel confused. Many health experts believe that the best way to help kids make sense of an adult medical situation is to tell the truth and give children accurate information.
That's why the National Multiple Sclerosis Society has published a 12- page workbook called "Nervo to the Rescue: A Guide to Understanding MS for Kids and Their Parents." The book uses funny characters, word puzzles and art projects to explain MS and help kids cope with their parent's disease.
Deborah Miller, a social worker who advised the MS Society on the development of the workbook, says, "Children are very attentive, and they notice things. If Mom's energy level has changed, if Dad walks differently or if a parent is spending more time in the doctor's office, the child will naturally try to make sense of the situation. However, the child may come up with an explanation that's far worse than what is actually happening."
Multiple sclerosis is a chronic disease that affects the central nervous system, the part of the body that carries messages to the brain. (Nerves carry commands such as "Pick up that pencil" or "Wiggle your toes.")
More than 300,000 people in the United States have MS. Most are diagnosed between the ages of 20 and 40. The symptoms, which differ from patient to patient, include fatigue, weakness in the arm or legs, numbness and vision or speech problems.
Doctors aren't sure what causes MS. They do know that something happens to damage the coating on nerve cells. The coating of a nerve cell is called its myelin sheath.
You know how sometimes the lights go out in your house because a circuit, or connection, is broken? Like a broken circuit in an electrical system, a broken or damaged myelin sheath can prevent impulses from moving through the body correctly. Then people have symptoms.
Each person with MS has a different experience with the disease. Some have mild symptoms that stay about the same over a long period of time. Others have symptoms that get worse over time, and they may have to rely on canes, wheelchairs or other devices to move around.
MS treatments include several different medicines, some of which are still being tested by researchers. People with MS can also undergo therapy to keep their bodies strong and to learn how to do things in new ways.
There is no cure for MS yet, but researchers are studying the disease and searching for clues on how to treat it. Each spring, families, classes, scout troops and other groups help raise money for research by taking part in the annual MS Walk, which is held in 700 cities around the country.
MS can be frightening and frustrating for families. Kids who have a parent with MS may have to do more around the house than they did before their mom or dad became ill. Some MS patients may be upset by the illness and become more cranky or moody. The symptoms may also make it impossible for the person to do some of the fun, active things that he or she used to do.
Kids can help by figuring out alternative activities for Mom or Dad to do with them. As Nervo says, the most important thing to remember is: "MS can change many things in your parent's life--and in your life. But it can never change the way you and your parent feel about each other!"
Tips for Parents
"Nervo to the Rescue," produced by the National Multiple Sclerosis Society,
is available free from local chapters or by calling MS Pathways, an information
resource for multiple sclerosis patients and their families, at 1-800-788-1467.
For general information about MS, check the group's Web site, www.nmss.org.
In the Washington area, you can contact the MS Society's National Capital
Chapter, 2021 K St. NW, Suite 715, Washington, DC 20006.