Wednesday, Aug. 8, 2007

Chat room offers support for children of MS patients

Karen Modell lends a helping hand to fellow MS patients and families

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A mother with multiple sclerosis (MS) is about to launch a new Internet chat room this fall for children struggling with the disease.

Not the illness itself, since children are rarely diagnosed with the chronic disease of the central nervous system. But children of MS patients suffer right along with parents and loved ones with symptoms that range from numbness to paralysis, said Karen Modell of Rockville.

An attorney and mother of two, Modell was diagnosed with MS in 1997. The disease hit her hard right from the start, and she was hospitalized for a couple of months and temporarily lost her vision.

Today, she uses a scooter or walker on shopping trips, travels to handicapped-accessible destinations like Disney World in Orlando, and hits the ski slops using a specially modified ski-sled.

‘‘MS is definitely a life-altering illness,” she said. ‘‘But you can still live a good life.”

But she will never forget how devastated she felt when first diagnosed.

‘‘I was in shock. My neurologist told me not to [research] into MS too much because the information could be overwhelming,” she said. ‘‘That was bad advice. You do have to weed out a lot of bad info, but there are so many places out there to go to for support.”

Since she felt Montgomery County lacked programs to help MS patients cope with the practical aspects of the disease, seven years ago she founded the Montgomery Multiple Sclerosis Center.

The nonprofit offers yoga, Tai Chi and other fitness classes at Temple Beth Ami in Rockville, provides referrals to medical specialists, arranges lectures and generally supports MS patients.

‘‘I’m not hopeful for a cure, but there are a lot of new medications out there that help with the symptoms,” she said.

The new chat room will go a long way to helping children deal with their feelings, fears and questions about the life-altering disease, she said.

‘‘[The disease] affects so many aspects of a child’s life yet parents with MS don’t often talk about it with their kids,” she said.

Dealing with the unpredictability of the disease is often difficult for children, said Christine Ratcliff of the Multiple Sclerosis Foundation, a nonprofit based in Fort Lauderdale, Fla., that runs national programs to support MS patients and their families.

‘‘Kids just don’t know what to expect. Their parent can be fine one week and the next so fatigued they can’t attend a school function,” she said. ‘‘But MS is manageable. And the more the person knows about it, the better they manage it.”

Children of chronically ill parents usually rise to the challenge, however.

‘‘Naturally they have some anxiety and fear, but kids are resilient and it’s surprising how much they can handle,” said Julie Hedges, vice president of community development of the National Multiple Sclerosis Society, Maryland Chapter.

The society runs retreat weekends to help educate patients and their families about the disease.

At those retreats, children talk about symptoms, what to expect, and how they help their parents around the home.

‘‘It’s pretty surprising how much kids can handle,” Hedges said.

The new chat room will enable children to explore their concerns candidly, Modell said.

It will be monitored, however, to ensure it is being used appropriately.

‘‘Kids have lots of concerns,” she said. ‘‘On the top of the list are: ‘Will [my parent] die?’ and ‘Will I get MS?’ This chat room will be a safe place for them to discuss their fears and compare notes.”

To Learn More

The Montgomery Multiple Sclerosis Center nonprofit can be reached at 301-838-9555 or www.montgomerymscenter.org. The center helps support patients with fitness classes and practical guidance on living with the chronic disease. Watch the Web site for news about a chat room opening this fall for children impacted by the disease.

To learn more about the National Multiple Sclerosis Society programs like family weekend retreats, go towww.nationalmssociety.org.

The Multiple Sclerosis Foundation offers publications, lectures and events for patients and families. To learn more, go towww.msfocus.org.