STRESS AND NEUROMUSCULAR DISEASE
What to Watch for in the Aftermath of Tragedy

by Bill Greenberg

There's no gauge by which to measure the overall stress level of a nation. But if there were, it would certainly show that our collective stress level increased dramatically on Sept. 11.

When terrorists struck the World Trade Center and the Pentagon, they not only attacked America — they attacked each and every one of us individually. And each of us is experiencing some degree of stress in the aftermath.

The Effects of Stress on Neuromuscular Diseases

Let’s look at the direct relationships between stress and neuromuscular diseases. It varies, depending on the disease.

Margaret Wahl, MDA senior medical and science writer, explains that "the muscular dystrophies and motor neuron diseases are probably not directly affected by stress. This is in contrast to disorders involving the immune system, such as the inflammatory myopathies and myasthenia gravis, in which changes in stress levels may have a more direct effect on muscle weakness."

Think of it this way. A disease such as Duchenne muscular dystrophy is the result of a flaw in the structure of each muscle cell. The flaw doesn’t really change in response to influences outside itself, including stress.

The body’s immune system, on the other hand, is constantly "on call," waiting to react to signals from other parts of the body. Wahl describes the immune system as being somewhat like an army, waiting for a real or imagined emergency. Stress may amplify an unwanted immune response.

"Also, some myopathies, such as periodic paralysis and myotonia congenita, which respond to subtle changes in the fluid that bathes cells, can be very much affected by stress levels," she adds.

So if your neuromuscular disorder is the result of a structural flaw, you probably won’t see a direct effect on your disease progression due to stress. But if your disease results from a flaw in one of the systems that reacts to outside stimuli — like stress — then you can expect to see a more direct effect.

The Effects of Stress on General Health

Neuromuscular diseases or not, when you experience stress, your body responds the same way it does when you're in danger. It produces stress hormones such as adrenaline and cortisol to help you deal with the immediate threat. Those hormones tell your body to give all its attention to the threat, diverting it from many normal operations — including the immune system's job of protecting you from bacteria, viruses and other unhealthy "invaders."

Since people with neuromuscular diseases often have weakened breathing muscles, they’re often more susceptible to respiratory problems — particularly pneumonia, which can be life-threatening. Reacting to stress can leave you vulnerable to respiratory infections and other health threats.

The immune system can be damaged by stress in another way. It communicates closely with the nervous system in ways scientists don't yet fully understand. But studies have repeatedly shown that having negative thoughts and emotions in our brains, such as worry, fear, anger or depression, makes the immune system less effective.

Dr. Paul J. Rosch, president of the American Institute of Stress, cautions that there are no hard and fast rules that can be applied to the subject of stress.

"It’s unique to each individual," Rosch says. "What causes distress in one person can actually be pleasurable to another. While there’s no question that stress can directly impact health, there are no ‘one-size-fits-all’ strategies for dealing with stress."

Why Now? Why This?

Since Sept. 11, Americans have experienced a range of emotions from unimaginable horror in response to images on TV, to an almost inconsolable sense of grief at the loss of so many of our fellow countrymen. We also may be feeling intense anger toward those who’ve attacked our country.

Rosch suggests that one aspect of these stressful emotions is a feeling of powerlessness. None of us could have prevented this awful tragedy, none of us can do anything to make the victims’ families whole again, and we’re uncertain how to prevent a recurrence.

"Powerlessness is a terrible feeling," Rosch says.

Jan Stolee agrees. She’s a mental health counselor who facilitates MDA support groups in the Seattle area.

"You didn’t do anything wrong to ‘deserve that’ or to make it happen," she says. "Therefore, you can’t do anything to make it never happen again, or to undo it."

Stolee says this kind of stress "very much mimics neuromuscular diseases. You get a diagnosis and there’s nothing you can do. It’s terrible, and I don’t know how people cope with that — but somehow they do."

Stolee points out that dealing with neuromuscular disease is stressful enough in itself. The resulting vulnerability can often lead to a lesser capacity for dealing with additional stress.

"It’s like another big load on top of what you’re already trying to deal with," she says.

"Each person is different," she explains. "In a sense, the better the functioning or coping mechanisms somebody has, or maybe the more mental health they have, the better they will do. People who are prone to depression anyway, or have had difficult life circumstances, may be already worn down a bit and this is just another added burden. And people can really only tolerate so much."

"Is It Safe?"

In the 1976 film "Marathon Man," Dustin Hoffman portrays an American college student taken prisoner by a fugitive Nazi, portrayed by Laurence Olivier. During an interrogation scene, Olivier’s character repeatedly asks Hoffman, "Is it safe?"

Hoffman’s character, having no idea what the question means, tries every answer he can think of. But none of his replies seem to satisfy his captor.

In a sense, that's the question that Americans are having so much trouble answering today. Are our lives safe? If having a neuromuscular disease makes you vulnerable, can you possibly be safe in a world in which terrorists can attack American cities?

Stolee explains it this way:

"There’s danger all around us — from cars, crossing the street, riding a bike. But we have a way of kidding ourselves, or walking around in denial, so to speak, which is actually quite functional. We really believe we’re safer than we actually are. But there’s just so much of the world that we don’t have control of, and I think that something like this episode reminds us of that."

It can alleviate some of our stress to realize that, while our feelings of safety and security have been shaken badly, we’re no more — and no less — safe and secure today than we were before Sept. 11.

Stress Can Be Depressing

Both Rosch and Stolee say the greatest health risk associated with stress lies in its potential to lead to depression.

According to the National Depressive and Manic-Depressive Association (http://www.DBSAlliance.org), there are several signs to watch for, if you’re concerned that you or a loved one may be experiencing clinical depression — the kind that lasts for more than a few weeks:

1. Prolonged sadness or unexplained crying spells
2. Significant changes in appetite or sleep patterns
3. Irritability, anger, worry, agitation, anxiety
4. Pessimism, indifference
5. Loss of energy, persistent lethargy
6. Feelings of guilt, worthlessness
7. Inability to concentrate, indecisiveness
8. Inability to enjoy former interests, social withdrawal
9. Unexplained aches, pains
10. Recurring thoughts of death, suicide

A pretty broad list of behaviors, to be sure. The key lies in knowing yourself or your loved one, talking through these issues as much as possible, and watching closely for any signs of unusual or abnormal behavior. If two or more of these symptoms persist beyond a couple of weeks, you should take steps to pull yourself out of the slump. If some of the following suggestions don’t help, get professional assistance from a clergy member, counselor or physician.

What Can We Do?

Talking about a stressful situation can help both adults and children.

Lois Salisbury, president of Children Now, suggests not only that you be honest with your children about the Sept. 11 events. You should actually initiate the conversation, rather than waiting for them to ask, she says.

"Ask your kids about their feelings," she writes in an article published online at www.drkoop.com. "Assure them that it is normal to feel angry, confused, sad or worried."

Children Now, a child policy and advocacy organization, offers a Web site (www.talkingwithkids.org) devoted to a national campaign called Talking with Kids About Tough Issues. There you'll find great advice on how to talk with children on a variety of difficult, "minefield" issues.

If feelings of powerlessness are at the root of the stress, Stolee says, the best way to fight back is to take some form of action.

"Write a letter to your congressman, or a letter to the editor of your local newspaper. It doesn’t matter whether you get an answer back or not," she says. "The point is that you were able to do something."

It may also make you feel a little more powerful to fly the American flag or support survivors and relief efforts.

Your friends at MDA have another suggestion.

Three days after the World Trade Center bombing, MDA National Chairman Jerry Lewis wrote a letter to the editor of U.S. newspapers, urging support of the International Association of Fire Fighters’ New York Fire Fighters 9-11 Disaster Relief Fund. In his letter, Lewis says: "Our emergency forces have given their all for us, time and again. Now it's time for us to provide them with help and hope."

Be Good to Yourself and Your Loved Ones

Here are some other things that may help.

1. Hug somebody, anybody. Talk to them about how you’re feeling, and ask them to do the same. Then hug them again.
2. As much as possible, keep up your normal routine. Take your medications on schedule and go to your normal appointments — clinic, physical therapy, etc.
3. Go to the next MDA support group meeting, even if you’ve never gone before. Maybe the other people there can help you, or maybe you can help them.
4. Do something fun. Anything that will take your mind off the stress — however briefly — will help.
5. And most of all, take care of yourself — physically and emotionally.

The essence of depression is feeling that you’re alone, trying to deal with a dangerous, complex world.

That’s why you hear President Bush and other leaders express the importance of unity. That’s why we’re so deeply touched by images of people from other countries mourning our loss.

So remember: Being a member of the MDA community means the same thing today as it has for 50-plus years: You don’t have to face this alone.