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OVEREATING & ACCIDENTS

The holiday dinner table, parties, buffets and ever-present treats are a cornucopia of high-cholesterol, high-fat foods. But eating excessively can lead to weight gain, which overtaxes weakened joints. In people whose neuromuscular disease makes it impossible to exercise, it's much harder to take off extra pounds.

Carter notes that "weight gain around the holidays can really impair your function if you have a slowly progressive muscular dystrophy. I have had patients who've actually gained enough weight where they weren't able to walk anymore."

He also warns about the "holiday heart attack syndrome." Those with neuromuscular-related or other heart problems should be especially careful about overeating and other holiday stress factors.

You can certainly enjoy holiday feasts and special treats. But do so in moderation, and try to alternate rich meals with low-calorie healthy ones.

Falls and other accidents are dangers of increased activity and a faster pace. Be extremely careful when negotiating snowy, icy sidewalks with walkers, braces or wheelchairs; when moving around an unfamiliar environment; or when getting in and out of vehicles or climbing stairs.

A fall or broken bone can result in permanent muscle damage and loss of mobility. Carter says, "I have had neuromuscular patients who have broken a bone, and that was the end of their walking."

CONFLICT & DEPRESSION

Stress factors can form a vicious circle. If you become ill or fatigued, or can't keep up the pace others expect, you may feel you've let down your family or friends. That leads to stressful emotions such as anxiety or depression, which increase the chances of getting ill.

Unrealistic expectations are notorious for causing holiday stress. Janas points out that media presentations can set up impossible expectations for a "perfect Christmas" or other holiday.

"Kids, and even adults, think that this is how it should be, and it never, ever is. When you're already disabled and all of these wonderful toys and vacations are being advertised on TV and you understand that you can't do that, that has an impact on the children," she says.

How children respond to that realization "frequently depends on how the families are handling it and whether this is a stressful holiday for them and if they're taking things in their stride," she adds.

Another source of stress is the presence of people with whom you're uncomfortable.

These may include "the aunts and uncles who haven't seen the child for a long period of time and are shocked by deterioration," Janas says. "They may make comments that the child is lazy and can really 'do it.' They may have lots of 'helpful' recommendations about how you can make them better, or not want to treat them like normal children. All of those thoughtless—not intentional, but innocent—comments can really hurt if a child overhears them."

The holidays make some people feel "different," left out or isolated.

Janas remarks, "Everybody's involved in their own thing and this child gets left out because he or she is not able to play the games, go on a new bike, or go on roller blades and do all of these things."

Parents or adults with neuromuscular diseases may reflect on the strength or abilities they or their children have lost during the year. It may be especially hard to get into the Yuletide or New Year's spirit during the first holiday after a diagnosis.

FEELING JOLLIER

You can manage expectations by keeping your holiday simple but meaningful. Focus on a few special activities rather than trying to do everything.

If you're around people who convey messages of pity, shock or misunderstanding, be patient and keep your perspective.

Janas says, "Sometimes there is nothing you can do with people. The best thing parents can do is to ignore them or take them aside and politely explain to them what's going on. And remind them that this child's hearing and intelligence are just fine, thank you."

If the relative or friend isn't open to understanding, you may have to limit your time around the person. Tell an older child (or yourself), "Aunt Sally is trying to be nice but she doesn't understand muscular dystrophy as well as you do. Just don't take her too seriously."

Humor is a great stress reliever. Watching a comical movie or laughing over your efforts to control everyone around you can restore perspective and help everyone relax.

There are many ways to include children or adults in holiday events, even when neuromuscular disease prevents them from doing exactly the same things others are doing. Children often have ideas about how they can participate. Just ask!

Gifts should be appropriate to a child's ability and include some fun things the child can share with other kids, such as an indoor game, puzzle, video or collection. Your child's gift to friends or cousins could be to "host" a trip to a museum, movie or recreational event.

At a family celebration or party, a child or adult with neuromuscular disease can show off a decorated wheelchair, play Santa Claus to younger kids, direct the placement of lights, choose music, or read or tell a seasonal story.

When the holidays bring melancholy, some people feel fortified by being around those they love. Focusing on the religious meaning of Hanukkah or Christmas, or the season's personal significance for you, can sometimes shift attention away from your troubles.

People in general experience an increase in depression during the holidays, and this is more common when major stressful events have recently occurred. Changes in sleeping and eating patterns, a loss of interest in things you once enjoyed, and persistent feelings of hopelessness or darkness are among the signs of depression. If these symptoms last for more than a couple of weeks, seek professional help from a member of the clergy, a counselor or a physician. Don't put it off.

Carter points out, "The holidays are always the time to reflect on things that have happened over the year or didn't happen. If people have had some decline in physical functioning and, particularly in ALS patients, thoughts about the end of life, they should watch for depression. You may need to get extra psychological support."

Kindness is the best present you can give yourself during a rough time. If holiday gaiety is unbearable, you needn't feel guilty about excusing yourself, with as much or as little explanation as you're comfortable with. Then, rather than dwelling on your negative thoughts, do something you find sustaining such as listening to music, talking quietly with a friend or having a massage. Prayer, meditation or journal writing may turn the season into one of renewal instead of despair.

NEW YEARS RESOLUTION: STRESS-FREE HOLIDAYS IN 2000

This year's holiday stress can be a learning opportunity. With planning, next year's special days can become models of sensible enjoyment.

Planning is the key. Decide well ahead of time how much travel, money and activity will make your holidays bright but not to the point of burnout.

Claire Chee, a nurse specialist in neurology at Children's Hospital of Philadelphia, says a family can "sit down as a group and everybody pitch in and say what they would like to do as part of the holiday. Out of that list, maybe take five things that the family agrees are really important."

Your plan should include time for rest, exercise, relaxation and healthy eating. Schedule personal assistants, home health care aides and babysitters well in advance, and have a backup plan in case they cancel. Get your support system in place, and know what you'll do in case of illness, fatigue, allergies or depression.

If you decide to travel, plan the trip in detail and allow plenty of time to rest before, during and after.

Chee, who works with the hospital's MDA clinic and leads an MDA support group for parents, advises checking out accessibility before you go to shopping malls, holiday displays, restaurants, churches, temples and homes. Having a portable ramp available can help if there's only one step to get over.

Find out what hours are least crowded at the stores you want to visit. Shopping year-round or buying gifts through catalogs and the Internet are even more convenient approaches (see "Holiday Gift Notions" from Quest, vol. 6, no. 5).

MDA clinic director Gregory Carter suggests getting wheelchairs, ventilators and other equipment serviced in the fall in order to avoid emergency repairs or having to wait for a new battery or tire until after the holidays.

If you're hosting a party or dinner, or managing a pageant at church or school, ask others to help, and keep it simple. Your guests will appreciate sharing the warmth and comfort of your home much more than a Martha Stewart extravaganza.

INCLUSION & GIFTS

Holiday activities should respect the individuality of the person with neuromuscular disease. For example, if your loved one wants to go Christmas shopping, assist him rather than making decisions for him. Let him choose the items he'd like to examine and bring them to his eye level, Chee says.

Respect the person's desire to participate in rituals and events and the method of doing it, even if it slows the process down. Place a menorah where everyone can reach it to light a Hanukkah candle. Or let a youngster in a wheelchair put ornaments on the lower branches of the Christmas tree.

A child can plan seating arrangements for dinner, put sprinkles on cookies or add finishing touches to homemade decorations. For gift wrapping, Chee says, "There are so many nice cheerful bags, rather than boxes and gift wrap. It might take a little time, but they can put things in a bag."

Above all, ask for the child's opinions and suggestions. Chee says the children she works with "are extremely creative" in finding ways to do things.

In choosing gifts, check carefully to be sure they're appropriate to the recipient's interests and abilities. For example, Chee points out, not all computer games are equally accessible.

"Research what is available and look at how much movement is needed to play that game. Sometimes there's a computer manufacturer whose game is easier to play and doesn't take as much movement as the popular brands."

Watch Quest year-round for ads and stories about toys, computer equipment and other products designed for people with movement limitations.

Carter notes that toy safety is especially important for children with muscular dystrophy. "If they swallow something, another kid might be able to cough it up, but a child with muscular dystrophy wouldn't be able to cough it up," he says.

SPECIAL NEEDS

Are you or your loved one likely to need a wheelchair, ventilator or some other piece of new equipment during 2000? If so, try to acquire it before Thanksgiving. This type of reminder of physical decline can be especially upsetting if it arrives near a birthday or during the holidays.

Some young children, however, may ask Santa to leave a new wheelchair under the Christmas tree, Chee says. To parents it's a symbol of disease progression, but to a child it may be the equivalent of a bicycle. A wheelchair accessory or any item that signifies greater independence can be a cheerful gift for a child or adult.

A service dog or a new pet should arrive well before the busy holiday season so it can settle into the household routine. But a new animal can be a holiday hit: Children will feel proud when they show it to visitors or demonstrate their skills in commanding it.

If 2000 proves to be a year of losses, you may want to plan a quiet, reflective holiday. You could start a new tradition to draw family members closer together, or create a special memory book or video that focuses on the good times. Helping others can shift your focus away from your troubles.

Creating a holiday that works for you and those you love adds meaning without taking away anything important. The only thing you'll sacrifice is the stress.