Judy Foreman

Nationally Sindicated Fitness, Health, and Medicine Columnist

Anxiety, it’s not just a state of mind

by

Jake McDowell, now 10 years old and a budding author, no less, was only eight when he began to think he was going crazy.

It started when he heard that one of his Waltham classmates had an infection in his heart and needed a heart transplant.

Jake’s anxiety about his classmate grew into an overwhelming fear of germs. “He was petrified of sitting next to anybody,” even in circles of kids at school, says his mother, Debbie.

Soon, he wouldn’t sit on her lap, either. Every time he touched anyone he’d wash his hands. When his parents told him to stop, he’d try to lick his hands clean instead.

It took a year of missed diagnoses — one therapist said Jake’s troubles were due to his father’s travelling — before doctors at McLean Hospital diagnosed obsessive compulsive disorder, or OCD, and gave him drugs and behavior therapy that worked a near-miracle in ridding Jake of his fears.

For Susan Sechrist, 29, it was plain old free-floating, heart-thumping, sleep-robbing, concentration-wrecking anxiety that made life miserable. At 18, Sechrist, who lives in East Greenbush, N.Y., quit school, thinking she was “high strung and creative.”

Today, with the right diagnosis — generalized anxiety disorder, or GAD — and treatment, she’s back in college, and engaged.

Everybody gets worried from time to time, even worried enough to lose sleep or come down with a queasy stomach.

For 23 million Americans, though, anxiety is not just an occasional problem but a devastating chronic condition that takes over a person’s life, all day, every day, impairing the ability to function at home or work.

But in the last several years, scientists have made stunning progress in unravelling the biological roots of anxiety, discovering neural pathways in the brain for specific types of severe anxiety such as panic disorder, post-traumatic stress disorder and obsessive-compulsive disorder.

Partly as a result, it is now clearer than ever that “the workings of the brain are involved in all our mental life and behavior,” says Dr. Steven E. Hyman, director of the National Institute of Mental Health.

“Descartes is dead,” says Hyman. “The old mind-body distinction does nothing but get in our way. Both medications and psychotherapy are effective because they work on the brain.”

In fact, far from being emotional wimps, as laid-back folks might think, people with anxiety disorders often have identifiable — and treatable — brain disorders.

It now appears, for instance, that at least some cases of obsessive-compulsive disorder are caused indirectly by bacterial infections. And panic attacks may be triggered by an overactive “suffocation alarm” in the body.

Likewise, persistent fears, like those in panic and post-traumatic stress disorders, may stem from an overzealous amygdala, the brain’s first-response system for danger.

Joseph LeDoux, a neuroscientist at New York University and a pioneer in the study of the neural pathways, has found that, in rat brains at least, the amygdala responds much faster to fear than the cortex, or higher brain centers.

In fact, the almond-shaped amygdala acts twice as fast, probably so that animals can start a fight-or-flight response at the first hint of danger, rather than wait for the cortex to do its slower, more analytical work.

When survival is at stake, in other words, evolution has pushed the brain to “decide” that it’s better to assume instantly that a snake-like stick is a snake — rather than vice-versa — and to check it out later.

When we do see something that looks dangerous, like a snake, all the incoming signals go first to the thalamus, a kind of relay station deep in the brain, says LeDoux. The thalamus then sends signals to the visual cortex for full analysis. But it also sends signals on a fast bypass to the amygdala, which readies the body for battle or flight — firing up heart rate, breathing and muscles.

This hair-trigger reaction of the amygdala explains why we “have emotional reactions to things we don’t understand,” says LeDoux. “We respond, then we realize why we are responding.”

The amygdala’s ability to bypass the rest of the brain may underlie the fact that we often have unconscious fears that words cannot explain. This fits, says LeDoux, with the fact that in kids, the amygdala develops before the hippocampus, the brain structure that forms conscious memories.

Though not everyone agrees with this explanation, LeDoux says it also explains why “it’s possible for you to be abused as a child and have unconscious emotional memories implanted through the amygdala without ever being able to verbally understand why those fears exist.”

In other words, Freud was right. Sort of.

As Hyman puts it, “We may have long-lasting emotional memories of experiences that we can’t explicitly remember, not because we have repressed them but because the amygdala matures before the hippocampus.”

There are other examples, too, of the way our neural hard-wiring processes fear, which is defined as a response to an immediate, real situation, and anxiety, which focuses on future threats and thoughts and for which neural messages travel a somewhat different circuit, starting in the cortex and eventually feeding into the amygdala pathway.

Years ago, Dr. Michael Jenike, associate chief of psychiatry at Massachusetts General Hospital, began to suspect a biochemical basis for OCD when he found that some anti-depressant drugs helped, but not others.

Recently, PET and MRI scans of the brain have bolstered the idea that the brains of people with OCD are abnormal, says Jenike. They often have less “white matter,” the fibers that connect nerves with one another, and more “gray matter,” the nerve cell bodies, than others.

And researchers have found that when they deliberately trigger obsessions in these patients by spreading germs on their hands, the frontal lobe and the thalamus “light up” on brain scans, showing precisely which neural pathways are involved.

Even more telling, says psychologist David H. Barlow, head of the new center for Anxiety and Related Disorders at Boston University, is the finding that when obsessive-compulsive patients are treated, whether by drugs or cognitive-behavioral therapy, brain scans often go back to normal, showing that both types of therapy act on the brain.

Researchers are also closing in on some of the reasons that abnormal brain patterns in anxiety develop in the first place.

In OCD, for instance, there often appears to be damage to a brain structure called the striatum.

Recently, Dr. Susan Swedo, acting scientific director of the national mental health institute, has found that, in kids with OCD, this damage can be caused by a streptococcus infection. The body reacts to the infection by making antibodies that then attack the striatum.

Researchers have also found biological triggers for panic.

The exact cause is still unclear, but some panic attacks begin when an instability in the nervous system triggers sudden changes in heart rate that can be frightening, says Dr. David Spiegel, medical director of the BU anxiety center.

Panic attacks also occur, he says, in people who have an “overactive suffocation alarm,” a system in the brain that monitors oxygen and carbon dioxide in the bloodstream.

If carbon dioxide levels get too high, the body may interpret this as suffocation, which can trigger panic. Panic can also occur if carbon dioxide drops too low, as often happens in people who hyperventilate — that is, who breathe too fast or too deeply, as anxious people do. The result can be dizziness and other symptoms that trigger panic.

In other words, sensations from the body can be just as frightening and have the same effect as seeing a snake, says Hyman.

While finding these and other biological triggers of anxiety is a step forward, patient advocates say, many people still spend years suffering — undiagnosed — in silence.

All too often, both lay people and doctors still think that “anxiety is something you can just snap out of,” says Barlow of BU. “But people with anxiety disorders lose as much quality of life and time from work as people with chronic heart disease, lung disease and severe depression.”

In that sense, at least, Jake McDowell was relatively lucky.

For months, says his mother Debbie, Jake seemed to be getting worse. His fear of germs grew into a terror that people he loved would die. Then he became terrified of his socks because their pressure on his skin “felt like rocks,” she says.

“We’d sit with 20 pairs of socks in his room in the morning,” says Debbie. “It came to the point where he couldn’t go to school because he wouldn’t get his socks on.”

Within a week of the right diagnosis, he started a behavioral program, called exposure and response prevention therapy, through which he got a reward for wearing his socks for 15 minutes a day, then for 10 minutes more each day until his fears vanished. His progress was “remarkable,” says his mother.

Jake also began taking drugs — Anafranil and Zoloft. Today, all he takes is Zoloft, and he has learned to talk himself out of his fears. Now, says Debbie, if he gets scared someone might die, “he knows it’s OCD, and this is not necessarily going to happen.”

In fact, she says with pride, Jake now leads a normal life.

Except, of course, that he’s already written a memoir about his experiences and will speak at an upcoming conference on the disorder.

SIDEBAR 1:

All had to be perfect.

Fran Sydney of Fairfield, Conn., is 51 now and has lived with the knowledge that she has obsessive compulsive disorder for 10 years.

But she’s really had OCD since she was five, she says, though for most of this time neither she nor anyone else had the slightest idea what was the matter with her.

At first, she just had an odd tendency to stack things, “to put them in order, for symmetry, by color or whatever. Then it got worse,” she recalls.

At 15, she was in a car accident in which a boy was killed. As Sydney’s anxieties mounted, she found herself constantly “folding things perfectly, lining them up” — rituals, she now understands, that were a desperate attempt “to take away the obsessions with things being out of control,” especially the fear that people close to her would die.

At 23, she married, hoping that marriage would soothe her fears. But her first baby strangled to death during birth, the umbilical cord wrapped around his neck.

“That’s when it really took hold,” she says. “I started to get into cleanliness, along with everything else.” Her towels were perfectly folded, the labels all lined up. The house was spotless. And Sydney was terrified.

A year later, she gave birth to a child who survived, but that only seemed to make her OCD worse. “If a piece of laundry fell at the side of the washer, I’d do it over,” not because of germs, but because everything had to be perfect.

“It’s not that you just want to do this,” she says of the rituals that were taking over her life. “This is something you have to do, and if it’s not done, you feel so overwhelmed with anxiety, or this dread or whatever, that it feels like your child is running across the street and will be hit by a car.”

Still petrified that something would happen to her child, she remembers thinking, “If I have another one, I’ll be less worried.” So she had two more, but it didn’t help.

Increasingly, she’d find herself in her alphabetically-organized kitchen, trying to decide whether to put a can of green beans under “G” for green or “B” for beans. As soon as she got home from the grocery store, she’d wash everything she’d bought.

Worst of all was the effect her behavior was having on her kids and her marriage. “These kids could not do anything,” she says. “We were prisoners in the house.” Her husband left her, in large part, she says, because of her disorder.

As the kids became teen-agers, they couldn’t have friends over because Sydney felt she would have to follow the guests around, cleaning after every step.

Yet Sydney, like many people with the disorder, was able to hide her symptoms from everyone but her family.

If friends invited her over for dinner, she would not reciprocate because she couldn’t have them in her house. She even “had a best friend who didn’t know anything about this,” she says. Once, when her friend wanted to drop in spontaneously, Sydney told her she’d locked her keys in the house. “I didn’t want her to watch my rituals. I’d have to wash the floor anywhere she went. That was a real low point.”

Finally, after seeing numerous psychiatrists and psychologists who thought she was just anxious or depressed, Sydney saw a newspaper article about a double-blind study at Yale University of a new medication for obsessive compulsive disorder.

Sydney immediately recognized that OCD was her problem and sought treatment at Yale. That was 10 years ago.

As soon as she started treatment, she began to get better. She used a combination of drug therapy, with Luvox, and cognitive restructuring — a way of learning to change her thoughts to reduce anxiety.

Today, Sydney, a real estate agent, is happy, remarried, enormously proud of her kids, now 23, 25 and 27 — and pleased with herself for finally getting help.

People with OCD go undiagnosed for years, she says, from shame and because doctors do not always recognize the symptoms — like spending hours a day hand-washing or checking and re-checking repeatedly to be sure a stove is off.

Her advice is as passionate as it is hard-won: “There is hope. There’s help. The only shame is in not getting help.”

SIDEBAR 2:

TREATMENTS FOR SPECIFIC ANXIETY DISORDERS

The more researchers tease apart the subtle and not-so-subtle differences among various anxiety disorders, the better they get at fine-tuning therapy — both drugs and cognitive-behavioral treatments — to each specific problem. A primer:

– Generalized anxiety disorder (GAD) affects 7 million Americans, according to the National Institute of Mental Health, and is marked by a tendency to anticipate disaster even if there is little reason to, and to worry excessively about health, money, family or work. People with generalized anxiety often can’t relax, sleep or concentrate and have physical symptoms such as trembling and muscle tension. Unlike everyday stress, their worries seriously impair functioning at home and work. People with GAD know their anxiety is excessive; they just can’t control it.

Treatments lag behind those for other anxiety disorders. But behavioral therapy — in which a patient practices relaxation techniques and is taught other ways to cope — often helps. So does cognitive therapy, which involves working consciously to change the thoughts that trigger anxiety. Once you become conscious of the thought: “I’m going to fail this exam,” for instance, you can replace it with a more realistic one: “I’ve prepared as best I can and will probably do OK.”

Medications can also help, in particular an anti-anxiety drug called BuSpar, which is not addictive and has been proved effective in some people, and tranquilizers like Valium, Xanax and Klonopin, which are effective but cause dependence.

Other drugs also seem promising, especially a class of anti-depressants called SSRIs (for selective serotonin re-uptake inhibitors). These include Prozac, Zoloft, Paxil and Luvox.

– Obsessive compulsive disorder (OCD) causes its victims to have repeated, intrusive thoughts and perform repetitive rituals. They know their behavior makes no sense, but they cannot stop it and can spend hours every day performing rituals like handwashing. An estimated 3.9 million Americans have the disorder.

There is strong evidence that a particular behavioral treatment, “exposure and response prevention,” is effective. If a person is obsessed with germs, for instance, he lets the therapist put germs on his hands and is then taught how to manage the anxiety without compulsive, immediate handwashing.

Drugs are also effective, particularly SSRIs and a different type of antidepresssant called Anafranil. In very extreme cases, brain surgeons can relieve symptoms by making make tiny cuts in specific areas of the brain affected by OCD.

– Panic disorder, which affects 3.3 million Americans, is marked by sudden, repeated episodes of terror — panic attacks. Physical symptoms include chest pain, heart palpitations, shortness of breath, dizziness, feelings of unreality and fear of dying.

In addition to the immediate terror, panic attacks can also leave a person with a phobia about the place where attacks occurred, such as a theater or shopping mall.

Panic attacks can also leave people terrified of anything — like sex, exercise or caffeine — that also causes a rapid heart beat or other disturbing physical sensations.

Panic attacks respond well to cognitive-behavior therapy, including a new variant called interoceptive exposure in which the therapist induces the physical sensations associated with panic, like dizziness, and the patient learns to reinterpret these as signs of anxiety, not of imminent death.

Phobias related to panic disorder can be effectively treated with exposure therapy, in which a patient is exposed to the terrifying place or object and taught not to fear it.

Drugs also work well, including high doses of tranquilizers. But increasingly, doctors favor SSRIs instead, because they have few side effects and don’t cause dependence. They sometimes also use an antidepresssant called Tofranil.

  • Phobias, which affect 7.2 million Americans, are extreme, disabling and irrational fears of something or some place that poses little actual danger. The fear leads to extreme avoidance of objects or situations, making some people housebound.
  • Drugs are not very effective against phobias, but cognitive-behavioral therapy often works, especially “exposure” therapy.
  • Post-traumatic stress disorder (PTSD) is marked by persistent nightmares, flashbacks, numbed emotions and a tendency to startle easily. PTSD can follow many traumatic experiences, including rape, war, child abuse, natural disasters or being taken hostage, and 5.7 million Americans are thought to be affected.

As with GAD, treatment options have lagged behind those for other anxiety disorders, but cognitive-behavioral therapy can help, as can group psychotherapy. Several antidepresssants have been tried, but none has proved universally effective.

SIDEBAR 3:

For general information on anxiety, call:

  • 1-888-8-ANXIETY. (You don’t have to dial the `y’ to get through.)
  • The Center for Anxiety and Related Disorders at Boston University: 617-353-9610.

For information on OCD:

  • 1-800-NEWS-4-OCD (a hotline operated by Solvay Pharmaceuticals, Pharmacia & Upjohn, which make and distribute Luvox.)
  • Web site: http://www.ocdresource.com\

You can also contact the following organizations:

  • Anxiety Disorders Association of America, Dept. A, 6000 Executive Blvd., Suite 513, Rockville, MD 20852. Tel.: 301-231-9350.
  • Freedom from Fear, 308 Seaview Ave., Staten Island, NY 10305. Tel. 718-351-1717.
  • National Anxiety Foundation, 3135 Cluster Dr., Lexington, KY 40517-4001. Tel.: 606-272-7166.
  • Obsessive-Compulsive (OC) Foundation, Inc., P.O. Box 70, Milford, CT 06460. Tel.: 203-878-5669.
  • American Psychiatric Association, 1400 K St. NW, Washington, DC 20005. Tel.: 202-682-6220.
  • American Psychological Association, 750 1st St. NE, Washington, DC 20002-4242. Tel.: 202-336-5500.
  • Association for Advancement of Behavior Therapy, 305 7th Ave., New York, NY 10001. Tel.: 212-647-1890.
  • National Alliance for the Mentally Ill, 200 N. Glebe Rd., Suite 1015, Arlington, VA 22203-3754. Tel.: 800-950-NAMI (950-6264).
  • National Institute of Mental Health:

Toll-free information services:

  • Depression: 1-800-421-4211
  • Panic and Other Anxiety Disorders: 800-647-2642.
  • National Mental Health Association, 1201 Prince St., Alexandria, VA 22314-2971. Tel.: 703-684-7722.
  • National Mental Health Consumers’ Self-Help Clearinghouse, 1211 Chestnut St., Philadelphia, PA 19107. Tel: 800-553-4539.
  • Phobics Anonymous, P.O. Box 1180, Palm Springs, CA 92263. Tel.: 619-322-COPE (332-2673).
  • Society for Traumatic Stress Studies, 60 Revere Dr., Suite 500, Northbrook, IL 60062. Tel.: 847-480-9080.

Who should you call

by

After 14 years of the terrifying asthma attacks that have plagued her son since infancy, Patricia Wooten, 31, of Dorchester has become a pro at triage – the fine art of distinguishing between life-and-death emergencies and scary, but less urgent, medical problems.

She has learned how to listen to James’ wheezing through a stethoscope and determine, with help from a doctor on the phone, whether it’s safe to increase his medications and handle things at home.

And she knows when to call 911 or to rush James to Boston Medical Center’s emergency room herself, zooming through traffic in 15 minutes flat.

But many parents, especially those with less experience than Wooten, aren’t sure which emergencies – from asthma to epileptic seizures to high fevers to bad falls – require a fast trip to the ER, and which ones can be handled by phone, in the doctor’s office or in the urgent care unit of a health maintenance organization.

And new research suggests that guessing wrong may be more dangerous than you may think. Pediatricians’ offices are often not equipped to handle emergencies because doctors think emergencies are rarer than they really are.

In a recent survey of 52 pediatric practices in Connecticut, for instance, researchers found that the average pediatric practice faces one emergency every other week – and that one quarter face an emergency every week.

Yet few pediatricians or their staffs are certified in basic or advanced life support techniques. And they often lack the necesssary equipment – oxygen, intravenous tubing, masks and bags to pump air into the lungs, says Dr. Glenn Flores, a Boston Medical Center pediatrician who was the study’s lead author.

While most pediatricians’ offices can handle a typical asthma crisis, Flores says, a third or fewer are prepared for other emergencies, such as upper airway obstruction, shock, trauma, epileptic seizure, cardiac arrest or a diabetic crisis.

Dr. George Foltin, director of pediatric emergency medicine at Bellevue Hospital in New York, emphatically agrees, noting that one third to 40 percent of all pediatricians and family practitioners are not ready for respiratory emergencies.

“And maybe 50 percent are not ready for other kinds of emergencies,” adds Foltin, a member of the pediatric emergency medicine committee of the American Academy of Pediatrics, which is holding its annual meeting this week in Boston.

Granted, it makes little sense, especially in or near a big city, for every pediatrician’s office to be as prepared for an emergency as a big hospital pediatric emergency unit.

“The average city police department doesn’t have a tank and an F-18, because they don’t usually use them,” says Dr. Gary Fleisher, chief of emergency medicine at Children’s Hospital. He argues that at least for urban pediatricians, often the best preparation “is to have a telephone so he can call 911.”

Still, there’s a lot that parents themselves can do to make sure their child gets the right care fast in an emergency.

The key is to discuss with your child’s pediatrician – before an emergency arises – when you should call 911 or the police emergency number to have the child rushed to a hospital, when to drive the child to an emergency room yourself, which hospital to go to – and when to triage problems by phone with the help of a doctor or nurse.

All this can get rather tricky, but a rough consensus emerged from interviews with several leading pediatric emergency specialists, among them, Dr. Martin Horowitz, director of pediatrics for the health center division of Harvard Pilgrim Health Care; Dr. Bob Vinci, director of the pediatric emergency department at Boston Medical Center; Dr. Suzanna Steinbach, director of the pediatric asthma clinic at BMC; Flores of BMC and Fleisher of Children’s.

Here’s what they said:

Sob story: why we cry, and how

by

The scene: New Zealand, a wilderness area along the coast.

The protagonist: A wet, half-naked Las Vegas psychologist named Jeffrey A. Kottler who was near death from hypothermia, having just waded across an icy bay, his clothes and pack on his head, during a solo trek that rangers said should be safe.

The plot: A dramatic rescue by hikers who dragged him to a hut, poured hot liquids into him and warmed the still-unconscious Kottler with their own body heat.

The surprise ending: Survival – and a 12-hour crying jag as Kottler imagined the pain his death would have caused his family.

That bout of tears changed his life, Kottler says, and led him to write an intriguing new book, “The Language of Tears,” on men, women and the mysteries of crying.

Aside from a very few, unconfirmed reports in animals – an Indian elephant here, an African gorilla there – humans are believed to be the only animals who shed tears when they are sad, joyous, angry, scared or otherwise overwhelmed by emotion.

Yet scientists know frustratingly little about whether there are differences between emotional tears and tears that just lubricate the eye, about differences between men’s and women’s tears or about their possible evolutionary role, like ridding the body of stress hormones or signalling submission to ward off an attacker.

Even psychologists, who spend their lives listening to people in tears, haven’t given much rigorous thought to tears, until recently.

All of which is a crying shame, says Kottler, who says ever since his epiphany Down Under, he has been fascinated by tears and has become – gasp – a man who is now moved to tears “very easily – and I am proud of that. It’s really cool.”

In fact, tears are increasingly cool, scientifically and politically.

Only a generation ago, Ed Muskie blew his 1972 presidential hopes by shedding a tear about a critical news report on his wife. Less than a decade ago, Colorado Congresswoman Pat Schroeder got endless grief for crying when she quit her presidential run in 1987.

Yet today, both Bill Clinton and Bob Dole seem so comfortable blubbering in public – dare one say “on cue?” – that the Wall Street Journal dubbed this campaign the “weepiest on record,” with only iron-man Ross Perot eschewing the snivels.

But it is not tearfully correct politics that fascinates researchers, but the makeup and function of tears. For more than a decade, the nation’s chief tear guru has been biochemist William Frey II, research director of the Ramsay Dry Eye and Tear Research Center in St. Paul.

Frey, who started studying tears at his mother’s suggestion, and others have uncovered a number of teary tidbits, to wit:

Adults sob only once in every dozen crying episodes.

Emotional tears contain more proteins than “irritant” tears, the kind you shed while slicing onions. Though Frey thinks this means that “something unique happens when people cry emotional tears,” other scientists have their doubts.

Both emotional and irritant tears contain 30 times more manganese than is found in blood, suggesting that human tear glands can concentrate and remove substances from the body. (In sea birds like gulls, albatrosses and cormorants, tear glands are more powerful than kidneys at removing toxic levels of salt from the body.)

About 85 percent of women and 73 percent of men say they feel better after crying, suggesting, says Frey, that “tears help remove chemicals that build up during stress.”

Women – surprise, surprise – cry four times more often than men, averaging 5.3 cries a month.

When men do cry, people may not even notice because male tears usually mean brimming eyes, not streams of tears cascading down the cheeks. “We cry, too,” says Kottler, “but women don’t understand it. Women think it’s not legitimate because we don’t make a lot of noise.”

Men’s and women’s tear glands are structurally different.

Yet nobody knows whether men’s and women’s tears are chemically different. Research does show that before puberty, boys and girls cry the same amount, but by age 18, women cry substantially more.

One obvious explanation is that boys may be told so often that real men don’t cry that they learn not to – a most regrettable phenomenon, as both Frey and Kottler see it.

But hormonal changes at puberty may also be involved. No one knows what effect, if any, estrogen may play in tearfulness, but data suggest that prolactin, a hormone that promotes secretion of milk and controls fluid balance. By age 18, women have 60 percent more prolactin than men.

Other biological processes may also influence production or composition of tears, though nobody has yet found precise links between changes in emotional state or specific biochemical changes in the brain and what gets secreted in tears.

Still, studies have shown that tears are triggered by nerves that pump out chemical messengers near tear glands and by circulating hormones, says physiologist Darlene Dartt, senior scientist at the Schepens Eye Research Institute in Boston.

Neurotransmitters like VIP and ACH, which have other, well-documented roles as chemical messengers, clearly trigger tears, she says, as do some pituitary hormones.

“There’s no question that specific biological pathways lead to emotional tears,” adds Dartt, “but we still don’t know which is more important – hormones or chemical messengers from nerves.”

Whatever the genesis of emotional tears, it’s long been known that everyday tears form a three-layered film that lubricates the eye. The mucin layer, closest to the eye’s surface, is made in the eyelid and on the surface of the eye; the aqueous or watery middle layer is made in the lacrimal gland above the eye; and the oily, top layer is made in the meibomian gland in the eyelid.

Normally, this three-tiered film protects the eye well.

But 10 million Americans, most of them women, do not make enough tears, a painful condition called “dry eye,” says endocrinologist David Sullivan, a senior scientist at Schepens.

In women, dry eye is often caused by Sjogren’s syndrome, a disease in which the body’s own antibodies attack the lacrimal gland, causing a shortage of aqueous tears.

In both men and women, dry eye can also result from a malfunctioning meibomian gland, producing too few oily tears.

Aging seems to make things worse, perhaps because the male hormone androgen seems to have something to do with tear formation, and both men and women have less of it as they get older. Many women get dry eye during menopause, when several hormones, including prolactin, also drop.

While over-the-counter “artificial tears” help keep eyes moist, using androgen eyedrops may work better, says Sullivan, who is testing the drops in patients now.

But tears do much more than keep eyeballs moist. They are a potent, if often misunderstood, mode of communication.

“There isn’t another form of emotional expression that can communicate so much,” says Kottler. “We can cry when we’re sad, despairing, depressed, sentimental, joyful, frustrated, angry, relieved, anxious or having an esthetic experience.”

Tears are so “riveting,” he adds, that “things stop” when someone starts to cry, because tears lend power and authenticity to whatever a person is doing or saying.

Just how easy it is to conjure up tears to manipulate people remains a subject of hot debate, as is the delicate matter of crying on the job (not on purpose), a common female fear.

What is clear, says Kottler, is that you can get better at dealing with tears, both your own and other people’s.

When someone starts to cry, the first step, he says, is to simply listen and perhaps touch or hold the person, if he or she indicates that that would be welcome.

“Men make the mistake, when women cry, of responding by saying, ‘What’s the problem? Let’s fix it.’ “

But listening is not enough. “The second part is encouraging some sort of verbal elaboration” – asking what the tears mean.

“You have to help people elaborate what’s going on inside,” he says. “People who are depressed cry all the time and feel worse,” he says, because depression is a kind of immobilized state, while sadness, once understood, can be “an intense feeling of being alive.”

The real key, he says, is this: “If crying brings you closer to other people, it’s good. If it pushes people away, it’s bad.”

Getting your shots is not kid stuff

by

“Here’s what got me thinking,” says Anne White of Lexington, who is 63.

“I’ve reached the age where I turn to the obits first. And I keep seeing articles about people who die unexpectedly in the hospital.”

Often, she finds, it’s pneumonia that delivers the coup de grace, “and you don’t even have to be old to pick it up.”

So to maximize her chances for a long and healthy life — inside a hospital or out — White has become a vaccine connoisseur, reading up on immunization for influenza, pneumonia and other scourges so diligently that she now finds herself ahead of many doctors — and patients — who, in her view, don’t take “shots” for adults nearly seriously enough.

She is absolutely right.

While childhood vaccination is one of America’s genuine success stories — only 200 to 300 American children now die every year from diseases that could have been prevented by vaccination — the figures for adults tell a much sadder story.

Every year, 50,000 to 70,000 adults die of influenza, pneumonia, hepatitis B and other diseases that could be prevented, says the National Coalition for Adult Immunization, a group of 85 health organizations.

In fact, despite safe and effective vaccines, influenza (the “flu”) and pneumonia together remain the fifth leading cause of death among older people, according to the US Department of Health and Human Services. In a typical season, 200,000 people wind up in the hospital and 20,000 die of flu; in a bad year, 40,000 die.

Part of the problem, says Dr. Susan Lett medical director of immunization at the state Department of Public Health, is that the immune system weakens with age.

But many adults just don’t think about vaccines for themselves. And while all states require kids to get shots before they’re allowed into school, there are few such carrots — or is it sticks? — for adults.

Some specialists now argue that immunization should be made mandatory for adults, too, says Dr. Thomas Yoshikawa, chairman of internal medicine at the Charles Drew University of Medicine and Science in Los Angeles.

So far, the long arm of the law doesn’t seem likely to reach out and jab you with a needle. But at the very least, vaccine specialists say, you should use the big birthdays — like 50 and 65 — as reminders to get your shots up to date.

So what vaccinations, specifically, should you ask about if you’ve spent more of your life arranging getting shots for your kids — and your dog — than yourself? Let’s give it a shot:

The following eight immunizations are recommended for many or all adults, according to the state Department of Public Health and the federal Centers for Disease Control and Prevention in Atlanta:

– Influenza, or flu. This disease, not to be confused with the merely miserable common cold, brings abrupt onset of fever, muscle aches, cough, sore throat and severe malaise.

If you’re a young adult in good health, you probably don’t need a flu shot, though it can’t hurt. But the CDC strongly recommends an annual flu shot for anyone six months old or older who’s at increased risk.

That includes everybody 65 or older; people in nursing homes or other chronic care facilities; adults and kids who have chronic conditions, including heart trouble, asthma and other lung problems, diabetes, kidney dysfunction or blood cell abnormalities; and people who have weakened immune systems.

Kids and teen-agers from 6 months to 18 years should also get flu shots if they are taking aspirin long-term because this raises the risk of a disease called Reye’s syndrome that can follow the flu. And you should probably also get it if you live with a high-risk person.

This year’s flu shots — available at CVS stores, through many employers and at local health clinics — use a mixture of three flu virus strains: an “A” strain discovered in Texas in 1991; an “A” strain similar to one found in Wuhan, China, in 1995; and a “B” strain similar to one found in Beijing in 1993.

“There’s nothing unusual expected” for this flu season, which should be at its worst in December, January and February, says Dr. Carolyn Bridges, an influenza specialist in the epidemic intelligence service at the CDC. For best protection, though, you should get your flu shot between now and the end of November, she says.

Because the flu vaccine is made from viruses grown in eggs, however, you should not get the vaccine if you are allergic to eggs.

– Pneumococcal pneumonia. While you’ve got one sleeve rolled up for a flu shot, roll up the other for a vaccine against pneumonia, suggests the American Lung Association.

“People 65 and older and anyone with a chronic illness should get this vaccine,” adds Lett of the Massachusetts health department. The vaccine, which protects against 23 strains of bacteria, can be given on the same day as the flu shot — in the other arm.

Most people need only one vaccination, but if you’re at higher risk, you may need a booster every three to six years.

– Tetanus. This vaccine is given to prevent lockjaw, a disease caused when bacteria invade the body through cuts. If you’ve never had a tetanus shot, you’ll need a series of three shots. After that, you need a booster every 10 years, or after five years if you suffer a deep puncture wound. The tetanus shot is usually combined with another one for. . .

– Diphtheria. This disease is rare in the United States but common elsewhere, and is fatal 10 percent of the time. You need a diphtheria shot every 10 years. When the diphtheria shot is combined with the tetanus vaccine, it’s called Td.

– Hepatitis B. This viral disease attacks the liver and can be fatal. It is spread much like AIDS — through sex and contact with bodily fluids — but 100 times more easily. You should get this vaccine if you are a health care worker, have several sexual partners, use IV drugs or have sex with or live with people who carry the virus. You need three shots over four to six months for maximum protection. To protect teenagers, the state last year started providing vaccines to all sixth graders.

– Measles, mumps and rubella (German measles). If you were born after 1956, chances are you need at least one combined MMR vaccine against all three diseases. And if you are a health care worker or a college student, you need two shots. (You should not get this vaccine while you are pregnant or less than three months before becoming pregnant.)

In addition to these eight vaccines, the National Coalition for Adult Immunization recommends two others: Chicken pox (varicella zoster) for health care workers and people who have not had chicken pox or are immunosuppressed; and hepatitis A for men who have sex with men. The varicella vaccine may also protect against shingles, a painful nerve condition.

Some people also ask doctors about vaccination against other diseases, including TB, or tuberculosis. Anne White, for instance, thinks a TB shot should be included because of the risk of infection on airplanes and other crowded places.

TB transmission can occur on planes, says Yoshikawa in Los Angeles, but immunization is not recommended because the effectiveness of TB vaccines made by different manufacturers varies widely: “It’s not cost- effective to do it if you don’t know how good the vaccine is.”

Whatever vaccines you need, don’t let fear of the cost stop you. Flu and pneumonoccus vaccines are available free for Massachusetts residents who go to local boards of health and nationwide, for anyone covered by Medicare Part B.

And in Massachusetts, tetanus and diphteria shots are also free. In some cases, the state will also pay for MMR and hepatitis B shots as well, though these are limited to people at higher risk.

The bottom line is simple. While many medical decisions are wrenchingly complicated, this one is a no-brainer.

If you’re at any kind of high risk, adult immunizations could save your life. They are safe. They work.

So, as the TV ads say, just do it.

SIDEBAR

How to get shots

 

– 1-800-LUNG-USA begin_of_the_skype_highlighting              1-800-LUNG-USA      end_of_the_skype_highlighting, American Lung Association.

– Local board of health.

– For flu shots at CVS pharmacies, call 800-SHOP-CVS begin_of_the_skype_highlighting              800-SHOP-CVS      end_of_the_skype_highlighting for scheduled times. Flu shots cost $10 to $15, depending on store location. Medicare recipients must present Medicare B card for free shot.

 

For information on where to get immunizations, call: 

SIDEBAR

How to get shots

 

– 1-800-LUNG-USA begin_of_the_skype_highlighting              1-800-LUNG-USA      end_of_the_skype_highlighting, American Lung Association.

– Local board of health.

– For flu shots at CVS pharmacies, call 800-SHOP-CVS begin_of_the_skype_highlighting              800-SHOP-CVS      end_of_the_skype_highlighting for scheduled times. Flu shots cost $10 to $15, depending on store location. Medicare recipients must present Medicare B card for free shot.

 

For information on where to get immunizations, call:

Caregiving from afar isn’t easy

by

For the last five years, Joyce Antler, a Brandeis University historian in her early 50s, has been living what she calls “a terrible nightmare.”

Antler lives in Brookline and is trying to manage the care of her increasingly demented, 84-year-old mother – long distance.

At first, the solution seemed to be to have her mother move up from Florida to live with Antler and her family, but within a month, she says, her mother “found it impossible because we were so busy. She felt like a fifth wheel.”

So Antler’s sister gave up her apartment in New York to move back to Florida with their mother. But this has proved only marginally better, Antler says, because her sister has serious medical problems of her own.

The result is ever more frequent – not to mention expensive – plane trips to Florida, endless telephone calls to help her sister manage crises and “semi-crises” and a lot of guilt.

Antler’s dilemma is the tip of a huge iceberg that, some worry, could come close to sinking the Great Ship Baby Boomer.

In fact, if you’re among America’s 76 million boomers – born between 1946 and 1964 – and you thought finding child care was a colossal hassle, you are about to get smacked between the eyes with an even bigger problem, if you haven’t been already.

Call it the geographic crunch. Suitcase caregiving. Long-distance care management. By whatever name, managing the care of a frail or disabled parent, especially from far away, is, as Antler says, a true nightmare, and one that will almost certainly get worse as boomers and their parents age.

Many older people, of course, are willing to make a final move to assisted living or a nursing home when it looks as though they will no longer be able to manage things at home.

But most want to live out their lives in their own homes, with the right kind of help – nursing services, home health aides and someone to help with errands, housekeeping and yard work.

The trouble with that, however, is that while services are available, especially for those who can pay for them, finding them usually means cutting through miles of red tape.

That is tough enough to do if your parents live next door, and it can be “truly overwhelming” if they don’t, says Scott Bass, dean of the graduate school at the University of Maryland/Baltimore County.

Although most people over 65 live within an hour’s drive of at least one child, an estimated 7 to 9 million aging parents do not, says gerontologist Merril Silverstein of the University of Southern California.

And that gap could get worse.

Currently, 2 million working Americans – most of them women – help older relatives with activities of daily life. But the “greater geographic dispersion of families, smaller family sizes and the large percentage of women who work outside the home are straining the capacity of this care source,” the government’s General Accounting Office noted in 1994.

While hands-on care – bathing, shopping, giving medications – is the most demanding help that children can provide to aging parents, the managerial stuff – the hours on the phone arranging or monitoring help given by others – is no small task.

In fact, lining up care for aging parents is “much more complicated than setting up child care for kids,” says Dorothy Howe, acting manager of health advocacy services for the American Association of Retired Persons in Washington.

For one thing, “you’re not dealing with a dependent,” says gerontologist Bass. “You don’t have the authority, necessarily, to intervene.” Added to that is an often complex family history, sibling disputes over who should help how – and distance.

It adds up to “a very, very stressful, difficult issue,” says Bass, who adds that even “experts in gerontology are absolutely drained by the experience of traveling back and forth” to help manage parents’ care.

“Are you kidding?,” he says. “You call state agencies and you get a recording. Or someone’s not helpful. Or it’s the wrong number. . . . This is probably the hardest thing a family can go through. It defies the complexity of what people experience with children.”

Al Norman, executive director of Mass Home Care, a consumer organization for the elderly, couldn’t agree more: “I found this out personally – and I am in the business.”

When his mother needed help for his father, who had Parkinson’s disease, Norman had “a devil of a time trying to just locate an area agency on aging in Maryland. . . . We never did find the right service for overnight care.”

And John Paul Marosy, a specialist on elder care issues and president of a consulting business, HM Associates in Belmont, tells a similar tale.

“I’ve been in home care for 20 years and nothing in my professional dealings with the elder service system prepared me for the complexity and emotional impact of trying to arrange care for my own father,” says Marosy, who was moving to Massachusetts when his father was diagnosed with cancer in New Jersey.

“I would argue that for baby boomers, the next role for radical activity is making sure the elder service system works for our parents so it will work for us when we get older. This is a real wake-up call.”

And there are signs the system is beginning to wake up.

Business is booming, for instance, at Work Family Directions, Inc. in Boston, the biggest player in the “work-life industry,” which helps employees balance work and family needs.

Work Family serves 2.5 million employees nationwide from companies like Digital, Gillette and Bank of Boston, says regional manager Diane Piktialis, 30 to 40 percent of whom need help with long distance caregiving of parents. Other groups like Elderlink in Somerville and WarmLines in Newton do likewise for employees of organizations like Wellesley and Babson College.

Diana Harrington, for instance, a Babson College professor of finance who is in her fifties, turned to WarmLines to find services for her mother in Virginia and her mother and father-in-law in West Palm Beach, Fla.

Trying to set up care from afar is “horrible, terrible,” she says. “You don’t have a clue where to start. I don’t even have a West Palm Beach phone book.” But WarmLines, which works with West Suburban Elder Services, helped, she says.

Even when a parent is able to find services on her own, it may still be worthwhile to do your own research to offer additional options, says Barbara Levitov, director of special events at WGBH-TV. At the very least, says Levitov, who sought help from Elderlink, having your own suggestions can help you “start having a real conversation” with your parent.

If you don’t work for a company that provides these kinds of services, you can plunge in yourself by calling local or state agencies on aging where your parent lives.

If you’re getting nowhere and can afford it, you can hire a geriatric care manager who should come up with options much faster than you can. So far, there is no national certification for professional care managers, though most are social workers or nurses. It costs $ 200 to $ 350 for an assessment of your parent’s needs, plus $ 40 to $ 150 an hour thereafter.

Whatever you do, be gentle as you plunge into this new role with your parents – with them and yourself – say those who’ve been there. Managing a parent’s housing, medical care and finances can be a burden, especially from afar, but it is also a chance to give back or smooth over decades of troubled history.

Marosy of Belmont found it “a tremendous opportunity for closure for me in my relationship with my father, which was a very hurtful one. I grew in ways I never would have expected.”

And be persuasive, not coercive, even if your parent’s pace toward solving a seemingly messy situation is slower than yours.

In extreme cases, you can get legal guardianship of a parent – if, say, you need to sell property to pay for services. But “legal intervention may not get you what you want – what you probably need is some negotiating skills,” says Nancy Coleman, director of the American Bar Association’s commission on legal problems of the elderly.

And when the going gets tough – as it will – remember what Marosy learned, as a professional and as a son. “Think about this caregiving as an opportunity. It’s almost a dress rehearsal for your own aging.

“In terms of psychological and emotional development, this is the entree to the second half of life. We can either ignore it or embrace it.”

1.   Helpful tips to remember

Specialists in aging offer the following tips for people trying to manage the care of aging parents long distance:

Women shouldn’t feel bad about feeling bad

by

When a stressed-out man walks into Alice Domar’s office and walks out an hour later with a relaxation tape in hand, chances are he’ll do what she recommends — take 20 minutes a day to listen to it. And feel much better.

But when a woman with the same — or worse — symptoms gets those tips and stress-reduction tapes, things turn out quite differently, says Domar, a psychologist at Deaconess Hospital.

“Women can’t do it. They can’t take 20 minutes for themselves. They say, `Who’ll watch the kids, cook dinner, do the laundry?’ ” she says. “Women feel guilty when they spend time on themselves.” Even exercise, she says, often becomes a mode of punishment for women, not a source of pleasure.

Whether or not women have more stress in their lives — and they may — they are certainly more upfront about it with health professionals. But they seem to have more trouble than men doing what often helps most: taking time for self-care, whether that’s meditation, exercise, yoga or a chat with a friend.

Starting as teen-agers, says psychologist Joan Borysenko of Boulder, Colo., girls begin to struggle with the issue of taking time for themselves, “and nobody resolves it by the end of adolescence. Women fight this all their lives.”

If you put yourself first, you’ll be “selfish;” if you put others first, you’ll be “selfless,” says Borysenko, who has a book on female biology and spirituality due out in January.

But recent research shows that if you are among the hustling hordes of harried heroines, there’s lots you can do to offset stress and the problems it can exacerbate, including hot flashes, infertility, PMS, chronic pain and depression.

First, especially if you’re a working mother, you can start with a healthy recognition of reality.

Two years ago, Labor Secretary Robert Reich released a major study confirming what women have long known. Women who work enjoy it — 79 percent say they “like” or “love” their jobs.

But they’re also stressed. In fact, 60 percent said stress is the most critical problem they face. Among other things, women still have trouble finding good childcare. They still earn less than men. And they still get less respect.

So it’s no surprise that working women with kids at home wind up with higher levels of the stress hormone cortisol in their urine than women in the same jobs without kids, says Dr. Redford Williams, director of the behavioral medicine research center at Duke University Medical Center.

Granted, men get stressed, too, both at home and at work. But one of the five biggest “psychosocial stress factors” — along with hostility, depression, social isolation and poverty — is having a “high-demand, low-control” job like being a file clerk or working on an assembly line, says Williams, and “women are more likely to be in low-control jobs.”

But women also have some advantages, says Williams. They clearly live longer than men and are “better off than men when it comes to being able to handle stress because they’re less hostile, better listeners and less aggressive.”

In fact, women can play to these social strengths to offset stress, he says. In his recent randomized study of 98 women, Williams found that 8-to-10-week stress management support groups clearly reduced stress among married mothers — far more so than simple group lectures.

But in reality, he says, “just about any stress management technique would work for women — if they’d use them.”

Getting women past that big “if” is the tough part, because “women have self-esteem issues,” says psychologist Domar, author of a new book called “Healing Mind, Healthy Woman.”

“They’re great at taking care of others, but not themselves.

“I’m not saying men don’t have self-esteem issues,” she adds, “but I find it easier to teach mind/body skills to men.”

Still, recent data show that once a woman allows herself time for stress reduction, troubling symptoms often improve. Some examples:

– Menopause. In a study by Domar and colleague Judith Irvin, 33 menopausal women were randomly assigned to listen to a relaxation tape for 20 minutes a day for seven weeks and keep a diary of this practice, to read daily for 20 minutes and keep a diary of this, or simply to record their hot flashes.

The women who practiced daily relaxation had a statistically significant — 28 percent — decline in hot flash intensity while the other two groups did not, says Domar, adding that these findings are in line with those of several other studies.

In another study, Domar showed that women with breast cancer who had hot flashes from the estrogen-blocking drug tamoxifen got a similar benefit from relaxation techniques.

– PMS, a set of symptoms including fatigue, irritability and mood swings that may precede a woman’s period. In a study of 70 women conducted with Irene Goodale, Domar randomly divided women into a group that practiced a relaxation technique daily, a group that read and a group that simply charted their PMS symptoms.

The women who were taught a meditation-like technique that Domar’s mentor, mind/body guru Dr. Herbert Benson, calls the “relaxation response” — which has been shown to decrease the body’s response to adrenalin — showed a 58 percent decline in PMS symptoms. The group that read had a 27 percent decline, and the women who simply charted symptoms, a 17 percent decline.

The improvement from simply charting symptoms, by the way, fits with a large body of research showing that just tracking your symptoms can help by enhancing a sense of control.

– Infertility. Domar’s previous research has shown that infertile women are often so depressed and anxious that their scores on mental health tests are indistinguishable from those of women with cancer, AIDS and heart disease.

But the nearly 300 women who have taken Domar’s 10-week program that teaches relaxation and other coping skills show a dramatic improvement in mental health, she says, ending up with mental health scores, on average, in the normal range.

And 42 percent get a bonus — pregnancy, though the most important outcome, she says, is that even women who do not get pregnant are much less distressed than they had been.

– Pain. Chronic pain is a major reason that patients, two-thirds of them women, flock to the stress reduction clinic at the UMass Medical Center in Worcester, says executive director Jon Kabat-Zinn.

While the Deaconess mind/body program stresses the relaxation response, including meditation or prayer by focusing on a word or mantra to clear the mind of distracting thoughts, Kabat-Zinn advocates another approach: mindfulness meditation.

In this technique, the goal is not to block things out but to “put out the welcome mat,” he says. “So if you have a headache or pain, you move into that sensation with awareness” — and without adding to distress by judging your own reactions.

Overall, his 8-week program leads to a 30 to 40 percent reduction in pain, he says, adding that pain reduction can be maintained for several years if patients keep meditating.

– Depression. Emerging data suggest that God may be as good as Prozac in fighting depression — especially for older women.

In a 1988 study of 850 people over 60, two-thirds of them women, Dr. Harold Koenig, a psychiatrist and head of Duke University’s Program on Religion, Aging and Health, found a strong link between “intrinsic religiosity” and well-being.

In other words, there seems to be something beneficial about having a strong faith, Koenig says, above and beyond the social support church activities can provides and regardless of financial status or physical health.

Perhaps a belief in God provides a worldview that gives peace by enabling people to understand negative events as God’s will, he says. Or perhaps it helps to believe that God is always there, even in the middle of the night or when death approaches.

The bottom line, say those who study women and stress, is that if you’re young and stressed, get going now. Don’t spend your whole life believing you don’t deserve time for yourself.

And there are signs, says Barrie R. Cassileth, a psychologist and medical sociologist at Duke and the University of North Carolina medical centers, that young women are doing just that.

“I hear it like a mantra,” she says of younger women’s determination to take care of themselves, a far cry from her mother’s days in which that attitude was almost “immoral.”

And if you’re an older woman and feeling stressed out?

Don’t give up. It’s never too late to learn to reduce stress, says Domar. And there may be an added bonus. “If you start treating yourself better,” she says, “you’ll not only profit yourself, you’ll be a great role model for your daughter, too.”

Judy Foreman is a member of the Globe staff. Her E-mail address, via Internet is: foreman(AT SIGN SYMBOL)globe.com

SIDEBAR:

To learn more

For more information on stress reduction programs, call:

  • Division of Behavioral Medicine, Deaconess Hospital, 617-632-9530.
  • Stress Reduction Clinic, UMass Medical Center, 508-856-2656.

Don’t take privacy for granted at infirmary

by

You break up with your girlfriend, blow an exam, start drinking every night, then come to your senses: Your friends are right – you’re depressed and should see the campus shrink.

But you’re freaked: Can the records of a few sessions with a college counselor today come back to haunt you years from now, like when you’ve just been nominated partner in a law firm?

You’re madly in love with your boyfriend. In fact, you want to marry him. But your birth control suddenly failed, so you drop in for a pregnancy test at the health service. The good news – it’s negative – is scrawled into your medical record.

You panic anew: Will there be a co-payment charge for the test on your term bill, which goes to your parents? Worse yet, could the record of your love troubles someday wind up in the wrong hands, like when you’ve decided to go for the big CEO job?

Chances are, if you’re like most students at this time of year, you’re young, strong, healthy and a lot more concerned about fitting Michelangelo and Music 1 into your schedule than something as seemingly arcane as medical confidentiality.

But maybe confidentiality should be a required course for one rather troubling reason: The rules are changing so fast that the privacy of your student medical records could end before your education does.

That, at least, is the worst-case scenario of privacy advocates who say college students may have even more to fear than the rest of us from the growing centralization and computerization of medical records, and from new laws that could undermine confidentiality for decades to come.

For one thing, you have more years of life ahead in which troubling tidbits in your record can lurk in cyberspace for employers or insurers to find. For another, you’re still learning your way around the medical system and experimenting with sex and relationships that can trigger medical visits.

But before you skip your next medical visit or decide not to tell the doctor about something important – which most emphatically is NOT the take-home message here – let’s be clear.

Many colleges do a good job with confidentiality. And there are things you can do to create your own safeguards.

Some colleges, Harvard and Wellesley to name but two, have written confidentiality policies – which you should read – that explicitly put privacy front and center, with few exceptions.

At Wellesley, for instance, “no records are released without a student’s consent unless it’s a life or death matter or unless it’s required for insurance, or the chart were subpoenaed,” says Dr. Charlotte Sanner, director of the health services.

And on-campus counseling records are “kept separate and locked up,” adds Robin Cook-Nobles, Wellesley’s counseling service director.

Other schools, like Smith and UMass/Amherst, are so concerned about privacy they offer anonymous (not just confidential) AIDS testing, which means test results don’t even go in your record. Harvard and Tufts are considering adopting similar policies.

Some argue that colleges are more sensitized to confidentiality issues than institutions in the “real world” because they’ve spent years walking the tightrope between the rights of students – who are legally adults at age 18 – and the concerns of parents, who worry about their not-quite-independent offspring – and still pay the bills.

‘Simplification’ mandated

But across the country, the privacy of medical records in general is under attack because of a series of bills recently passed or now under debate in Congress.

Just a few weeks ago, for instance, Congress passed the Kennedy-Kassebaum bill which ensures portability of benefits from job to job, but mandates “administrative simplification.”

This sets in motion a process that could give every patient a unique “identifier” like a Social Security number and create a national computer network to allow health care companies to pass records among themselves. Privacy advocates are lobbying for safeguards – like patient consent before information goes into computer data banks – but so far, with little success.

In theory, a national, cradle-to-grave database could be a boon for research, save health care costs and maybe even save your life if, say, you got sick in California and your medical records from Harvard were just a click of the mouse away.

But lifelong medical records easily accessible by computer is “a dreadful prospect,” says Beverly Woodward, a Brandeis University philosopher and privacy specialist. The new system, she wrote in a recent Washington Post op-ed piece, “will make it virtually impossible to obtain confidential medical care.”

And nowhere is the threat more worrisome than on campuses.

“It used to be that college students’ biggest worry might be if their parents were to find out some medical information, says Dr. Denise Nagel, a Lexington psychiatrist who is now president of the National Coalition for Patient Rights.

“But now the much more real danger is that the information will be available to a future employer or insurer. Because of computerization and the changing definition of confidentiality, access to private information is being given to too many people without patient consent,” she says.

“And this is particularly bad for college students because they’re away from home for the first time and most don’t think of the effects on future employers and insurers.”

“This is a big issue for us,” agrees John Roberts, director of the American Civil Liberties Union of Massachusetts, adding, “Things have gotten terrible in the last few weeks.”

Even without the new legislation – including other bills now in the works – medical confidentiality on campus has long been a delicate balancing act, especially if a student is in a life or death situation, or someone thinks he or she is.

Policies vary, but with dicey issues like a pregnancy or eating disorders, the policy at Harvard, for instance, is to respect confidentiality but encourage the student to talk with parents, says Dr. David S. Rosenthal, head of Harvard’s University Health Service.

Ideally, he says, doctors should “work with the student,” asking something like, “Would you like us to call your parents while you’re here?” It often works, he says, because parents like being informed and students may be relieved to have a dilemma presented by a professional.

Harvard also asks parents’ permission for any procedure, like surgery and anesthesia, necessary to save a student’s life, and informs the freshman dean or house master if a student is hospitalized, though the diagnosis is kept secret.

If university doctors feel the student is a serious risk to himself or anyone else, they will also tell parents, Rosenthal says, even if the student has not consented.

Confidentiality is closest to absolute – at Harvard and elsewhere – when it comes to revealing AIDS test results, which by state law can be released only to the adult patient involved.

Many unaware of risks

On many campuses, though, while students are fully aware of their privacy rights with AIDS testing, they are still unaware of the threats to confidentiality from new legislation.

Ariel Nason, 21, a pre-med and nutrition major at UMass/Amherst, worries that as students learn about these threats, they “may feel they can’t be open and honest. . . “I’m scared that people wouldn’t tell their doctors everything because of this.”

Tufts political science major Andi Friedman, 20, agrees, adding that her generation has “grown up knowing how easy it is to find information about things. It seems very little is truly confidential.”

In fact, the prospect of a national, computerized health data system to which numerous people have access sounds “terribly Orwellian” to Tufts junior Joel LaVangia, 20.

“I could get worked up about that,” he says, “maybe carry a sign or two.”

The solution, says Lexington psychiatrist Nagel, is not to shy away from care but to make sure health professionals know how concerned you are about confidentiality and ask their help.

After all, she says, “It’s no longer just the fear that your parents might find something out. It’s your whole future – employment and insurance.”

Brandeis philosopher Woodward agrees.

“Sometimes I thank my lucky stars I’m as old as I am, ” she adds. “If I were a student, I’d be extremely cautious.” Judy Foreman is a member of the Globe staff. Her E-mail address, via Internet is: foreman(AT SIGN SYMBOL)globe.com

A student’s guide to Greater Boston’s colleges, entertainment, employment, apartments, and more, is available on Globe Online at http://www.boston.com. The keyword is: On Campus.

Other sources for this column: Harvard University, and Kathleen Dias, patient advocate; Tufts University, Bobbie Knabel, dean of students, and Michelle Bowdler, director of health services; UMass/Amherst, Bernette Melby, director of health services.

Also, Mass. Department of Public Health, Mindy Mazur, assistant director of HIV counselling, testing and client services, and Carl Rosenfield, deputy general counsel at the state Department of Public Health; Colin J. Zick, a lawyer at Foley, Hoag & Eliot who specializes in health care and confidentiality.

Confidential tips

Privacy advocates, lawyers, university health officials and others suggest the following tips for college students concerned about the confidentiality of medical and psychiatric records.

  • Know what kind of health insurance you have and read the section on confidentiality. Ask health care professionals how your personal information will be handled.
  • In particular, ask under what circumstances your records would be revealed, and to whom. If you’re also covered by your parents’ insurance, find out if they signed a waiver allowing release of confidential information that may apply to you, too.
  • Ask what services, including lab tests, might show up on your regular term bill, and who gets copies of it. If you have a test for something sensitive – pregnancy, say, or a sexually transmitted disease – consider paying for it yourself so nothing shows up on your term bill or your insurer’s records.
  • Or, consider a do-it-yourself pregnancy test. If it’s positive, though, you should seek medical care.
  • Ask where records are stored and who has access to them.
  • If you’ve signed a waiver in advance to release confidential information under certain conditions, ask to be informed every time information is released.
  • An up-to-date copy of your records, read them, and ask for changes if you find anything untrue or worrisome. If you’re worried about a particular office visit, negotiate with the school to have that part of the record stored separately so it is not released if an employer or insurer asks for your record.
  • Find out if counseling records are merged with medical records and ask to have yours kept separate. With on-campus counseling, ask if information is ever divulged to school officials.
  • If you discuss issues like sexual orientation with your caregiver, ask if it’s necessary to put this in your record.
  • Ask if your medical and/or psychiatric records are computerized; if there’s a choice, ask that they not be.
  • For AIDS testing, consider anonymous, not just confidential, testing and go off campus if necessary. The state Department of Public Health has a list of AIDS test sites (1-800-750-2016). But many college students are actually at low risk, so state officials urge you not to use this program needlessly.
  • Use cau Law Institute, 617-867-7881 (for AIDS-related issues).

Also the American Civil Liberties Union of Massachusetts, 617-482-3170 may be of assistance.

Follow the ‘rule of 3’s’ on back pain

by

Annie Baehr, who works at the Berklee College of Music, figures she has struggled with back pain for nearly 40 of her 55 years.

For a while, the Winchester woman says, she trudged to orthopedic specialists, but “nobody gave me any relief.” Last year, when the back pain evolved into daily headaches, she turned to prescription painkillers, but they didn’t help either. The pills “covered up the pain,” she says, but made things worse when she stopped.Cherie Hoffman, 35, a Wellesley mother and publisher of a travel guide for students, has trod a similar path, searching fruitlessly – until recently – for any method or magician who might ease her pain.

“I was living on Advil,” she says, from the pain of lifting her kids in and out of car seats. “My back was killing me.”

Back pain, especially in the lower back, which bears the brunt of the human penchant for walking upright, is endemic – and probably has been since our species got off all fours.

In fact, it’s so common that some specialists say “it’s normal if you have it and abnormal if you don’t,” jokes Dr. Edward Hanley, chairman of orthopedic surgery at Carolinas Medical Center in Charlotte, N.C.

Over a lifetime, 80 percent of us will have at least one episode of incapacitating back pain, the data show, making bad backs second only to colds as a reason to see a doctor, and the leading reason for missed days of work among under 45. The good news is that even when back pain is acute, the best remedy is almost always common sense and tincture of time.

Usually, relief comes in a few days if you pop a few over-the-counter anti-inflammatory drugs (judiciously, so you don’t get an upset stomach or ulcer), apply ice packs or heating pads (it doesn’t seem to matter which, though heat may feel better on muscle aches and cold on acute injuries) and lie down for a few hours or, at most, a few days.

Then get up and get on with life, including regular walking, biking or swimming with a few sit-ups or back-strengthening exercises thrown in for good measure. Staying in bed more than two days, research shows, can do more harm than good – it weakens bones and muscles and creates a “sickness” mentality.

In fact, for most bad backs, you don’t even need to call a doctor unless pain is severe or doesn’t begin to go away within a few days. Just follow what Dr. Howard Martin, an orthopedic surgeon at New England Baptist Hospital and at SportsMedicine Brookline, a clinic for athletes, calls “the rule of threes.”

“If your pain starts to get better by three days and is all gone by three weeks, it’s perfectly safe to ignore it,” he says. Even pain in the buttocks or back of the thigh doesn’t need medical attention, he adds, unless it shoots below the knee, a sign of possible nerve irritation from more serious injury.

Your bad back does need an immediate professional evaluation, however, if you can’t control your bowel or bladder or if you feel numbness in a leg, the groin or rectal area – all signs of possible damage to the spinal nerves in your back.

In the old days, back specialists assumed that most lower back troubles stemmed from problems with the squishy discs that act as shock absorbers between the vertebrae.

Today, these slipped, herniated or ruptured discs – all terms for the same problem, in which the gristle-like disc gets pushed out of position and pinches a nerve – are believed to be a serious problem for only about 2 percent of the population.

And even for disc patients, specialists say, surgery is no longer as common as it once was because 75 percent of disc problems get better on their own over time.

In fact, surgery helps in only about one in 100 cases, according to a 1994 report from a panel of low back pain specialists convened by the government’s Agency for Health Care Policy and Research. It is generally reserved for patients with sciatica – pain that shoots down the leg past the knee.

Most back pain, in other words, is caused not by structural damage to the spine, nor by even rarer tumors or infections, but by run-of-the-mill soft tissue problems like muscle strains and ligament sprains.

But run-of-the-mill pain is definitely no joke, especially when it’s your back. So what really works and what doesn’t?

That depends on whom you talk to, and there is an embarrassment of specialists in the booming $ 50 billion-a-year back pain industry, all eager for your health care dollars.

You might, for instance, take your bad back to an orthopedic surgeon, an M.D. who, historically, may have been inclined to steer you toward surgery but today may well be open to other options. Or you can try a physiatrist (also called a medical orthopedist), an M.D. who is not a surgeon but has orthopedic training.

Or you can look for an osteopathic physician – a challenge in Boston, but easier elsewhere. Osteopaths (D.O.s) are not M.D.s, but they get almost identical training and the same license and have extra training in spinal manipulation.

If you’d rather see a non-physician, you can try a chiropractor, who has more than four years of post-college training and specializes in spinal adjustments; a physical therapist, who can suggest exercises for weak muscles and gentle mobilization of spinal joints; or a massage therapist, who can massage away some aches and pains, at least temporarily.

With so many pros to choose from, does it matter whom you pick? For truly serious problems, yes, which means you should probably see a physician of some type, including an internist, at some point. But for less serious troubles, it probably doesn’t matter much, since you’re destined to get better anyway.

There is consensus, according to the 1994 government panel, that spinal manipulation by a chiropractor or osteopath does help, though if it hasn’t worked for an acute episode of back pain after four weeks, you should stop and reevaluate.

You can also use friends’ testimonials to guide you through the maze, but this can be as confusing as listening to the pros.

Cherie Hoffman, for instance, raves about the hands-on help she’s gotten from her osteopath in Rhode Island, which makes sense to Dr. Charles Radbill, an osteopath in Wellesley Hills.

Radbill believes that the root of much back pain is joint dysfunction – particularly in the sacroiliac joint in the pelvis. Gentle osteopathic manipulation, he says, including of fascial tissue that wraps around muscles, can help considerably.

Osteopathy “has been a miracle cure for me,” says Hoffman, who stayed away from chiropractors because she disliked “the thought of having somebody crack my back into submission.”

But her sister-in-law, Penney Hoffman, 37, a Marblehead human resources manager, wouldn’t take her aching back to anyone but a chiropractor. She’s so enthusiastic, she calls her chiropractor her “primary doctor” and even has him treat her kids, though her insurance doesn’t cover it and the family pays $ 1,500 a year.

That kind of passion is familiar to Barry Freedman, a Quincy chiropractor, who is convinced the basic problem in many bad backs is subluxation, or misalignment of the spine, which puts pressure on nerves and triggers muscle spasms.

Muscle relaxants or physical therapy are “not going to get rid of subluxation,” Freedman argues, but chiropractic can.

And what of other things like traction, TENS (transcutaneous electrical nerve stimulation), massage, biofeedback, acupuncture, injections, corsets and ultrasound?

If you believe the government panel, none of these speeds recovery from acute back pain or wards off recurrences, though they may offer short-term relief. But practitioners – and patients – tell a different story.

Massage therapist Linda Whitcomb of Concord Avenue Physical Therapy Associates in Cambridge, for instance, says massage can loosen tight muscles “so that when you lift something awkwardly, you won’t put as much strain on the muscle.”

Her partner, physical therapist Nicholas R. Giurleo adds that physical therapists can also teach you to prevent back problems by sitting right so as not to overstretch ligaments, and lifting things correctly, with a slight arch in your back.

They can also prescribe individualized abdominal and back exercises to help keep muscles strong in the “body core,” says Michael Wood, a research associate at Tufts University.

If you already have a bad back, though, take care before embarking on any exercise program, warns Daniel Dyrek, a physical therapist at the Institute for Health Professions at Massachusetts General Hospital. Generic exercises that are not tailored to your specific problem may do more harm than good.

But the most important message, he says, is that if you’re not getting better with whatever specialist you’re seeing, try another one, either in the same discipline or another.

Annie Baehr seconds that notion.

Thanks to osteopathy, she says, “I am getting better.” But like many others who struggle with bad backs, she has found that true healing is “a long, long process.”

To learn more

For more information on low back problems, call the Agency for Health Care Policy and Research, 1-800-358-9295 begin_of_the_skype_highlighting              1-800-358-9295      end_of_the_skype_highlighting.

You can also get information from this agency on the Internet by clicking on: http://www.ahcpr.gov/ and then clicking on “guidelines” and following the directions from there.

1. Back pain is almost normal, jokes Dr. Edward Hanley. 

2. Barry Freedman thinks spinal misalignment is a factor in back pain.

Sometimes they need help, often they just need to talk

by

Suddenly, it seemed as if that old “I’ve fallen and I can’t get up” TV ad had sprung to life.

Louise Macnair, a widow who is now 93, crashed to the floor in the living room of her Cambridge home and thought, “This is the occasion. I’ve got to push that button.” She did, and within minutes, the people at Lifeline Systems, Inc., the oldest and largest personal emergency response system — PERS, to the cognoscenti — called a neighbor whom Macnair had designated as a “responder.” Soon the neighbor and an ambulance arrived.

Macnair spent five months hospitalized with one complication after another from what turned out to be a broken hip. But in May 1995, to her great delight, she returned to the life she loved — living alone in her own home.

“I swear by it, Lifeline. I’ll sing its praises for anybody,” she says of the device that she believes allows her this independence. “It’s security. As long as I have that button, I know I can get help right away.”

Roughly half a million older people in the United States and Canada now have a PERS system, industry figures suggest, and those figures are growing slowly but steadily.

Most systems — there are more than 20 on the market — consist of a small radio transmitter worn on the wrist or around the neck (the help button), a console on the phone that receives the radio message and automatically dials a designated number, and a response center, where people answer calls and dispatch help. They are guided by computerized information given by the subscriber on whom to call in an emergency, including ambulances, doctors, hospitals, family members and neighbors.

But while some people use the systems just as inventors intended — to summon medical help — 95 percent now rely on it for another reason: to combat the isolation of living alone.

There is little doubt that as the ranks of older Americans swell, the need for both emergency medical assistance and psychological support for those living alone is increasing.

Fifty years ago, 10 percent of households had just one person, census figures show. Today, it’s up to 24 percent. And nearly half — 47 percent — of those over 85 live alone.

A recent San Francisco study, published in the New England Journal of Medicine, reported that it is “common for elderly people living alone to be found helpless or dead in their homes,” and that timely help can save lives.

Among the 367 people studied — only one of whom had a PERS device — two-thirds of those who had been helpless for 72 hours or more died, compared to only 12 percent of those who had been helpless for less than an hour.

To be sure, many older people living alone — the majority of whom are women — truly enjoy it, says Scott Bass, the newly-appointed dean of the graduate school of the University of Maryland/Baltimore County. “They’re thrilled. They will thrive. They have resources. They’re alone but not lonely.”

But many others feel isolated living by themselves.

To combat this, some organize daily calling circles, the so-called “girls in the building” approach, says Al Norman, executive director of Mass HomeCare, a nonprofit consumer rights group. This “low-tech, high-touch” solution is often the best, he adds.

Others prefer formal programs, like the “friendly visitor” system run by some Councils on Aging that send volunteers to a person’s house regularly to play cards or just check in.

Some towns go even further. In Needham, the Council on Aging offers a “Ring Every Day” program in which volunteers call people who request it. In Franklin, the police department does likewise.

Still other older people rely on postal workers or Meals on Wheels drivers to make sure they’re up and about every day if friends or families can’t check in on them.

But growing numbers of older people — and the adult children who worry about them — are turning to high-tech solutions for the peace of mind that allows elders to live alone.

Some people who live alone, like Grace Marvin, 86, of West Roxbury, would never think of using their PERS system to assuage loneliness or fill the need to be checked up on.

“Oh, heavens no. I don’t call in to talk,” she says.

Nor does Beatrice Kadetsky, 88, of Chestnut Hill. “I could use somebody to talk to when I’m alone,” she concedes. “But I wouldn’t think of imposing on them.”

Thousands do, though, and PERS companies, far from considering such calls an imposition, are increasingly targeting their services toward these needs.

At Lifeline, for instance, CEO Ron Feinstein says the people who answer 10,000 to 12,000 calls a day in the company’s Cambridge center began to realize a few years ago that the overwhelming majority of calls were not emergencies.

Sometimes, he said, one ear cocked to the hum of phone calls around him, people “accidentally” hit the help button strapped to their wrists or hung around their neck, then linger on the line to chat when Lifeline calls back. Others call and openly acknowledge they just need someone to talk to, which is, he says, fine with Lifeline.

Fred Siegel, sales and marketing analyst for American Medical Alert, shares that view, noting that his company is starting a service whereby PERS operators will initiate regular check-in calls to subscribers.

Some companies also offer electronic monitoring through an “inactivity alarm,” a kind of timer built in to the PERS program. If the subscriber wants this service, she agrees to press a button at a certain time every day. If she doesn’t, the company calls her.

Other companies accomplish the same thing with motion detectors that trigger a call by the company if the subscriber does not move around within a certain amount of time.

Precisely because PERS programs, which cost about $1 a day, can offer peace of mind, they are now mainstream, says Norman. Since 1991, in fact, PERS programs have been part of the benefit package offered by the state to 33,000 home care recipients.

Ruth Harriet Jacobs, a sociologist at the Wellesley College Center for Research on Women who was hired last year by Lifeline to visit and assess 25 subscribers, vouches for what PERS means to people.

“To tell you the truth,” she says, “I was dreading going out on these interviews,” assuming it would be “depressing to see people homebound and frail.”

But she and her colleague “completely reversed our thinking. We came away with tremendous admiration for these people,” she says. “I know this sounds like I’m a hired gun for Lifeline, but the truth is we found their homes meant a great deal to them, and their possessions. To stay out of a nursing home “was really important to them.”

All that makes Newton psychologist Andrew Dibner a happy man.

Twenty-two years ago, while Dibner was shaving one morning, it came to him in a flash that there must be some way for older people to signal for help if they couldn’t get to a phone. The result was the inactivity alarm, later the help button — and ultimately, Lifeline.

Now retired from Lifeline, Dibner is thrilled that his idea has caught on, especially, he says, because “we’ve done a lot of good.”

SIDEBAR:

To learn more

 

— 1-800-AGE-INFO begin_of_the_skype_highlighting              1-800-AGE-INFO      end_of_the_skype_highlighting (800-243-4636 begin_of_the_skype_highlighting              800-243-4636      end_of_the_skype_highlighting).

— For information on the “friendly visitor” or similar programs, call your local Council on Aging.

— For brochures on PERS, write to Product Report: PERS (D12905), American Association of Retired Persons, EE01054, 601 E Street, NW, Washington, D.C. 20049.

The AARP recommends shopping around for PERS products and testing or renting a product in your home before buying it. Most systems cost about $1 a day and are not covered by insurance.

Some systems are marketed directly through hospitals and may be cheaper if you get them this way.

A partial list of companies offering PERS products follows:

Lifeline Systems, 1-800-543-3546 begin_of_the_skype_highlighting              1-800-543-3546      end_of_the_skype_highlighting.

Pioneer Medical Systems, 1-800-234-0683 begin_of_the_skype_highlighting              1-800-234-0683      end_of_the_skype_highlighting.

Medi-Mate (Colonial Medical Alert Systems), 1-800-323-6794 begin_of_the_skype_highlighting              1-800-323-6794      end_of_the_skype_highlighting.

Good Neighbor Program of American Medical Response, Inc., 1-800-877-8978 begin_of_the_skype_highlighting              1-800-877-8978      end_of_the_skype_highlighting.

American Medical Alert, 1-800-645-3244 begin_of_the_skype_highlighting              1-800-645-3244      end_of_the_skype_highlighting.

Responsibility Systems, Inc., 1-800-759-3227 begin_of_the_skype_highlighting              1-800-759-3227      end_of_the_skype_highlighting.

For more information on PERS or personal emergency response systems, call: 

SIDEBAR:

To learn more

 

— 1-800-AGE-INFO begin_of_the_skype_highlighting              1-800-AGE-INFO      end_of_the_skype_highlighting (800-243-4636 begin_of_the_skype_highlighting              800-243-4636      end_of_the_skype_highlighting).

— For information on the “friendly visitor” or similar programs, call your local Council on Aging.

— For brochures on PERS, write to Product Report: PERS (D12905), American Association of Retired Persons, EE01054, 601 E Street, NW, Washington, D.C. 20049.

The AARP recommends shopping around for PERS products and testing or renting a product in your home before buying it. Most systems cost about $1 a day and are not covered by insurance.

Some systems are marketed directly through hospitals and may be cheaper if you get them this way.

A partial list of companies offering PERS products follows:

Lifeline Systems, 1-800-543-3546 begin_of_the_skype_highlighting              1-800-543-3546      end_of_the_skype_highlighting.

Pioneer Medical Systems, 1-800-234-0683 begin_of_the_skype_highlighting              1-800-234-0683      end_of_the_skype_highlighting.

Medi-Mate (Colonial Medical Alert Systems), 1-800-323-6794 begin_of_the_skype_highlighting              1-800-323-6794      end_of_the_skype_highlighting.

Good Neighbor Program of American Medical Response, Inc., 1-800-877-8978 begin_of_the_skype_highlighting              1-800-877-8978      end_of_the_skype_highlighting.

American Medical Alert, 1-800-645-3244 begin_of_the_skype_highlighting              1-800-645-3244      end_of_the_skype_highlighting.

Responsibility Systems, Inc., 1-800-759-3227 begin_of_the_skype_highlighting              1-800-759-3227      end_of_the_skype_highlighting.

For more information on PERS or personal emergency response systems, call:

When a teen-ager’s parent is facing death

by

Miranda Worthen, now 17 and a senior at Newton North High School, was nine when her mother told her she had breast cancer.

Miranda had listened for years to her mother’s stories about her own mother, who died before Miranda was born. Now, as her mother put her to bed that night eight years ago, Miranda went straight to the heart of the matter.

“What is it like,” she asked, “not to have a mother?”

Contemplating a world without a parent is difficult, whether you’re 17 or 70. But for a teen-ager, it can be truly destabilizing to think that the person you count on as both your friend and your intimate enemy might not be there to set the very limits you detest.

Yet despite the huge challenge of growing up knowing that a parent might be facing death, teen-agers like Miranda have discovered that there are ways not merely to avoid falling apart, but to grow up sane and healthy, even happy.

Like younger children, of course, teen-agers worry – often secretly – about who will care for them if a parent dies. But beyond that fear, the issues are different for teen-agers than for younger kids, even in the same family.

Young children, for instance, may not understand what death means. But adolescents, their sometimes-reckless behavior notwithstanding, grasp that death is permanent, and that if a parent dies it will change their lives forever. They also usually know there’s no truth to “magical thinking” – the idea young kids often have that their own anger could kill a parent.

Teen-agers face other problems that younger kids do not.

Because they think they’re immortal, for instance, “it really shakes them up” when a parent gets a serious diagnosis, says Dr. Alvin Poussaint, a Harvard Medical School psychiatrist.

Teen-agers are also busy “moving toward independence,” says Dr. David Spiegel, a psychiatrist at Stanford Medical Center in California, “so there’s a tremendous pull on them when a parent gets sick. They feel infantilized, like, ‘God, I’m 6 again, I can’t go out, I can’t be with my friends.’ “

A parent’s potentially fatal illness is an “intrusion on their own personal development,” he adds. “Sometimes they can articulate that, but often they feel too guilty and ashamed.”

“All of a sudden, it becomes very scary,” agrees Gerald Koocher, a psychologist at Boston’s Children’s Hospital.  “You can’t storm out of the house and say, ‘I wish you were dead.’ “

But there are things you can do, say both the pros and parents and teen-agers who’ve been there. For instance:

1.  Recognize that even if your parent does not die, things may never be the same.

Susan Anthony, now 19 and a paralegal in North Reading, was 13 when her father had surgery to remove his cancerous vocal cords.

Richard Anthony, now 60, says a cancer diagnosis has “a hell of an impact on the family, even the dog.” Today, he swallows air to produce a raspy “esophageal speech.”

For Susan, the whole experience was “pretty traumatic, and the hardest part was accepting his new voice. He had a wonderful, soft, melodic voice. . .”

Even the good changes were hard. Her dad “had had a quick temper,” she says. Now he’s “calmer. . .but I had a hard time accepting the change. He didn’t seem to be the same person.”

2.  Try to find ways to help out that also help you.

Even when she was only 10, Miranda recalls, she gave her mother long foot massages and hugged her “constantly.”

Sometimes, her mother, Kathy Weingarten, now 49 and a psychologist at Children’s Hospital and the Family Institute in Cambridge, worried that Miranda was doing too much. But Miranda says, “It helped me get through it then, to know I could help her.”

Still, parents should set limits on how much help they expect, says Siegel. “It can’t be that every time you go out, you’re abandoning your mom. Tell the child to clean up the kitchen or whatever, then let them go out.” And acknowledge the child’s help. “That means a great deal to kids.”

3.  If you’re old enough, consider participating in your parent’s treatment, if everyone agrees that’s appropriate.

Kathryn Bailis, 21, the daughter of Susan Bailis, 50, president of The ADS Group, an elder service organization, was 17 when her mother was diagnosed with breast cancer. “It was the worst day of my life,” she recalls. “We sat on the kitchen floor for a long time. I collapsed in her arms.. . . I wailed.”

Since her mother’s cancer came back, Kathryn says, “I go to chemo with her a lot,” which gives her pride in her mother’s courage. “She sits in her nice silk suit while everyone else looks like a victim,” says Kathryn. “She makes phone calls and does work. . . It’s amazing.”

4.  After you have offered whatever help you can, don’t try to be superkid. You still have a right to be a teen-ager.

Some adults burden kids by saying they’ll be the “man of the house” or the new mother if the parent dies. What kids should hear, says Koocher, is that “We’re all going to have to pull together as a family.”

5.  Find ways to spend extra time with your parents.

Because of her mother’s illness, Kathryn Bailis, a senior at Colgate University, decided to spend the summer at home. “Now, every moment is special,” she says.

6.  Stop fighting with your parents about little stuff.

“I fought with my mom for years,” Kathryn says. “I was angry because she worked so much.  . .Now I feel there’s no point in getting angry because in the end, who knows how long I have with her, so I’d rather not waste the time fighting over what’s not important.”

7.  Try to turn the crisis into a chance to grow.

When Kathy Weingarten’s cancer recurred and she had a partial mastectomy, Miranda worried that her friends would be “creeped out.” So the two talked about it in their mother-daughter reading group, then Weingarten asked if the group wanted to see her chest. They did.

“So she took off her shirt and showed us. She was really brave,” says Miranda. “The mothers walked out with their daughters and held their hands. The girls would sort of bury their faces in their mothers’ intact chests and look at my mother.”

But her friends “grew into a different emotion about it,” she says, and she learned “if they couldn’t accept a woman who had had a terrible disease. . .then I wouldn’t want to be friends with them anyway. I ended up not losing any friends at all.”

Weingarten was as awed by Miranda’s growth as her daughter was by hers. Miranda was “deeply politicized,” she says. “She became very supportive of me. She’s an extraordinary kid.”

8.  Recognize that it’s natural to fear you could get the same kind of cancer your parent has. Ask for extra medical checkups for reassurance.

Both Miranda Worthen and Kathryn Bailis, for instance, worry a lot about breast cancer. When asked what she wanted for her 17th birthday, Miranda answered, “A mammogram.” She was too young, but her doctor agreed to give her frequent breast exams.

9.  Face the fear of death together – by talking.

Discussing death with Miranda, her husband Hilary and their son Ben, 20, has been “a very profound experience,” says Weingarten.

“Of course, it would be the worst thing that could happen,” she says. But she and the others tell each other, “We don’t have to deal with that now. It’s not happening. . . You don’t have to worry alone and I don’t have to worry alone.”

10.  Avoid information or people that upset you.

When she was diagnosed with breast cancer this spring, Eve Nichols, 44, director of public affairs at the Whitehead Institute for Biomedical Research in Cambridge, discovered well-meaning adults were telling her kids, Matthew, 19, and Beth, 17, about their own parents’ deaths at a young age.

“I had a very good prognosis, so that was difficult for the kids,” she says. “My advice to people is to listen to the kids and support where they are at the time.”

And simply get out of harm’s way if you feel bombarded by information – or feelings – you don’t want to deal with right then.

Miranda recalls a conversation not long ago when a woman started talking about her mammogram. “I got really frightened. . . . I dug my nails into my hands. Three minutes later, I realized what I was doing and said, ‘Mom, we need to stop this conversation.’ Then we sort of pieced together what had happened to make me so freaked out.”

11.  Talk, talk, talk. If your parents can’t listen when you need them to, seek out other adults – clergy, teachers, family friends – as well as your own friends, who can.

Before her daughter could talk to her directly about her fears, says Eve Nichols, Beth confided in a family friend, a source of support that was crucial.

Avoid the friends who, as Kathryn Bailis puts it, “can’t deal at all.” Focus on those who can, the ones you can have fun with when you’re up and cry with when you need to.

If you become depressed or suicidal, you may need a professional to talk to, says Poussaint. One sign you may need this help is if you start drinking heavily or using drugs.

12.  When the going gets rough, do as Susan Anthony does: “Remember, your parents are going through as much as you are, so it’s going to be hard to deal with. Just take it one day at a time.”

Someone to talk to

If you’re a teen-ager who has a parent with cancer, you might consider attending a networking group for teens at the Wellness Community in Newton Centre. The telephone number is 617-332-1919.

You can also find adults outside the family to talk to through many schools, churches and hospital emergency rooms.