May 5, 1999

ON GAINING STRENGTH FROM OTHERS

MDA's field staff, working in some 200 offices in communities across the United States, are able to do a great deal on a daily basis to mitigate the destructive effects of progressive neuromuscular diseases. By making available diagnostic services and follow-up medical care at MDA clinics, by helping to provide medically-prescribed equipment such as braces and wheelchairs, and by coordinating other services such as MDA summer camp sessions for children, MDA staff are able to have a huge, beneficial impact on the lives of those our Association serves.

There are less tangible ways in which MDA staff help. Listening to families and helping them share their emotional burdens is crucially important. Anyone who's familiar with neuromuscular diseases knows that these disorders can have an insidious, socially isolating effect. But human empathy and caring on the part of MDA staff can do much to let families and individuals realize they are truly never alone.

In addition, MDA enables families it serves to fulfill their need to talk to others who share the reality of living with a neuromuscular disease on a day-to-day basis.

That's where MDA support groups come in. In MDA support groups, families fighting neuromuscular diseases can get firsthand information and advice from others fighting the same or similar diseases.

One support group participant said: "In the beginning you have an alone feeling, like you're the only one going through this. The support group helps you realize you're not the only one."

Currently, some 230 MDA support groups are operating in 45 states. Some are facilitated by social workers, some by physicians or nurses, and others by therapists, educators and MDA staff.

Many MDA support groups are general in nature, meaning they allow for interaction among individuals with any of a number of neuromuscular disorders. Some groups focus on specific diseases, ranging from ALS to myasthenia gravis, Duchenne and Becker muscular dystrophy to Charcot-Marie-Tooth disease. Some support groups are dedicated to the needs of parents. Others center on young people. Others are for caregivers.

Insights and information are shared, as well as difficult and complex emotions. In addition to having feelings and concerns validated in a safe environment, group members can be empowered by realizing their own abilities to help others by sharing their unique life experiences.

Parents, for example, share experiences and questions about an endless list of topics: medical/scientific issues such as surgery and exercises and the latest research news... special challenges such as dealing with a child's problems at school and finding accessible parks and recreational sites... and family questions about the needs of healthy siblings and dealing with extended family members.

"We learn a lot from parents who've been there before us," one parent said. "And I feel I'm starting to be able to help other parents." Another support group participant said: "We learn things in the support group that even a doctor can't tell you."

Most support groups meet on a monthly basis. Others convene more or less frequently depending on the members' needs.

To learn more about MDA support groups that meet in your area, simply enter your ZIP code in the local office locator which will provide a telephone number for your local Health Care Service Coordinator.

With every good wish . . .

The Ross Report Archive