Living with a neuromuscular disease can be demanding, exhausting and frightening -- for family members as well as for those with the disorder. MDA support groups provide a setting where parents, spouses and other caregivers can share tears and frustration, encouragement and hope, as well as practical tips on everything from recipes to respirators. Participants also gain deep friendships, renewed strength and a shelter from isolation.

Among MDA's 190 support/interaction groups across the country are groups just for caregivers of adults with neuromuscular diseases and others open only to parents of affected children.

FROM ISOLATION TO A NEW FAMILY

MDA support groups offer a level of understanding and encouragement that caregivers can't get from their own families, friends, religious communities, doctors or books. It can only come from others in the same situation.

Marcia Randall, health care service coordinator in MDA's Canton, Mass., office in the Boston area, said, "Family members are great and you need the support of your extended family but, when it comes down to it, they don't really understand what it's like to have a child with muscular dystrophy."

Whether participants first turn to a group to express emotions, feel less isolated or get help with practical problems, they receive a full array of support. Parents, for example, share their questions and experiences about an endless list of topics: medical issues such as surgery, drug therapies, exercises, the latest in research, use of wheelchairs or braces...special challenges such as school problems, the child's social adjustment, accessible parks and recreational sites, the future...family questions about the needs of healthy siblings, talking with their children about the disease, effects on others in the family, children's behavior, and dealing with extended family members...and the parents' own pain, loneliness, hopes and fears.

FACING FEARS AND EXPRESSING FEELINGS

As Michelle and Jim Vasile of Oceanside, Calif., drove to their first support group meeting in San Diego, Michelle said, "We were scared to death. There were going to be feelings touched, and we weren't sure if we wanted to have those emotions come out." Their son, Cole, 9, has Duchenne muscular dystrophy.

For the Vasiles, the fears and defenses quickly melted. "We didn't have to be afraid to verbalize and cry and have those feelings. It was OK in that room."

Many participants report getting as much satisfaction from helping others as from receiving support. Starla Collins of San Diego, mother of two sons with Duchenne dystrophy, has attended an MDA parents' support group for two and a half years. "We learn a lot from parents who've been there before us. And I feel I'm starting to be able to help other parents," Collins said.

By drawing strength from each other through support groups, caregivers become better able to care for family members with neuromuscular diseases.

All MDA support group meetings include a time to share personal and immediate concerns, and some feature a guest speaker or informational program. MDA often helps provide child care during meetings to enable more parents to attend.

The mother of a 24-year-old law student with spinal muscular atrophy told a parents' group in St. Louis how she'd dealt with school officials during her daughter's childhood. Debbie King, MDA health care service coordinator in St. Louis, said the program was a big success. "It's really helpful for parents of a newly diagnosed child to see this seasoned veteran who has faced so many challenges and whose daughter is doing very well."

Most MDA parent support groups are open to those whose children have any MDA-covered disease. Kathy Sanders of Roxbury, Mass., whose daughter Julia has facioscapulohumeral muscular dystrophy, wondered if she could relate to people whose children were more disabled than her daughter or whose diseases were life- threatening.

She discovered, "Even though our children's diseases, ages and life situations are varied, there are a lot of things we do share, including the very unknown nature that comes with (dystrophy)."

TAKING CARE OF YOURSELF, TOO

Caregivers of people affected by amyotrophic lateral sclerosis face a wide range of demands. At support group meetings, they exchange ideas on such topics as: communication devices, orthopedic equipment, phone company services, food preparation, travel, accessible recreation, studies of new drugs, insurance, Social Security, Medicare, clothing modification, hiring and managing personal assistants, dealing with respirators and feeding tubes, financial resources and home modifications.

They also benefit from hearing each other's ideas about adaptive devices for everyday living. For example, Glenn Riese, San Diego HCSC, said one man brought in his TV remote control, which his neighbor had modified with Popsicle sticks so the man could operate it with his foot after he lost use of his hands.

Support groups provide a place to express the emotional and physical stresses of caring for someone with progressive ALS. Nancy MacLean of Braintree, Mass., whose husband Michael, 44, has ALS, said her group often focuses on "taking care of yourself."

"The big thing is to be more assertive about asking family and friends for what you need," said MacLean, an executive with a human services agency who has three children. Others may not know how to help, but they can be asked to prepare and store meals in advance, baby-sit, or help with housecleaning and errands. If you try to do it all, MacLean said, "you'll end up hurting yourself and then you're no good to the patient."

LEARNING AND TEACHING

Kathy Remmenga of O'Fallon, Mo., has attended an MDA support group for the year and a half since her husband, Ben, 48, received his diagnosis of ALS. Longtime group members "call themselves veterans and give you hints on how to handle things." Her husband's sister also frequently attends.

The group helps the Remmengas stay up-to-date on MDA research into potential treatments. "That's our hope. They're working on it and that's got to give us some encouragement." Her group has developed a slogan, "Don't ever give up," which appears on the T- shirts many members wear to meetings, showing a frog frantically trying to escape the clutches of a large bird.

Support groups even help outsiders. Riese invited two MDA- funded ALS researchers from the University of San Diego- California who'd never met anyone with the disease to speak to patients and caregivers at a support group. Afterwards, the scientists "kept thanking me for inviting them. They said it was so nice to be able to see what they're doing this for," he said.

Gladys Oliver, whose husband Al, 80, has had ALS for six years, said, "We learn things in support group that even the doctors can't tell you -- things like how to handle a person, how to live with it every day." Devoted to supporting others, she's known as "the hugger."

ALS caregivers also share their thoughts and experiences of death. A participant whose spouse has passed away is urged to say good-bye to the group and tell them what happened.

"You have all these fears of what death is like. It's usually been very peaceful for people and that's good to know. It also helps to know that these survivors are able to come to the group, which means they've kept it together and are able to move on," MacLean said.