A S P E C I A L R E P R I N T

THE MAGAZINE FOR MEMBERS OF THE NATIONAL MS SOCIETY

4 About MS and My Mind Readers share experiences and coping tips.

7 Depression: My Storyby Shelley Peterman Schwarz

The author looks back at her battles with clinical depressionover 20 years.

8 Depression: The Doctors Are Inby Henry Hample

Two researchers talkabout prevalence,medications,psychotherapy, andnew theories about MSand depression.

12 Memory and Problem Solvingby Martha Jablow

These are the two most commonglitches when MS affects thinking.

19 An Ocean of Emotion by Cynthia Arnold

For some, emotions swingwildly—or they aren’t appropriate.

21 The Devil of Denialby Karen J. Zielinski

Coming to grips with cognitiveproblems isn’t easy.

MSand theMind

and theMindMS

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MS is not a disease that plays fair.It takes unexpected turns at

unexpected times. No one, not the per-son who has MS nor the most experi-enced MS specialist in the land, can pre-dict with certainty what any one person’sMS may do. This special section dealswith things MS may do to a person’smind—the “thinking” or cognitive func-tions, and the emotions.

May do—or may not do. No article inthis section will speak to all personal expe-riences of MS. But all have been preparedin the belief that knowledge is power.

The illustrations have been created byDavid Hollenbach, a professional commer-cial artist, as a gift to InsideMS. David

lives with MS himself. The woman inDavid’s picture on the opposite page findsher thinking dimmed. She has lit a candleto compensate.

Experts and people living with MSagree that there are many ways to com-pensate for mental symptoms. A sense of humor and a bit of patience were mentioned by everyone. These are nothopeless problems.

Still, we know this subject is not an easyone. If anything you read here leaves youconcerned or distressed—please tell some-one you trust. Get support for how youfeel and what you think. Get help withyour next decisions. Light a candle foryourself and others.

ILLUSTRATIONS BY DAVID HOLLENBACH

S P E C I A LR

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and theMindMS

Readers sent a flood of letters on thesubject of MS and their minds. Here

are some highlights, reflecting many differ-ent experiences and many common themes.

“I’ve had episodes of almost total disorien-tation. I didn’t mention these lapses to myneurologist during my diagnosis interviewbecause I had no idea they could be MS-related and my neurologist never asked meabout mental symptoms.”—Howard Bell, Minnesota

“I spread my company benefits package

out on the kitchentable and stared. Itwas so beyond whatI could deal with Isat there and cried.Eventually I was ableto make heads andtails of it but thissort of thing hap-pens more fre-quently than I like.” —Sandra Elkins,via e-mail

“I am much moreemotional than Iused to be, espe-

cially right before my period. My neurolo-gist prescribed Wellbutrin. I don’t feel anydifferent, but my coworkers say theynotice improvement.”—Lisa Roesner, New Jersey

“There are times when I cry at a commer-cial and yet I have to remember to actexcited when other people think that’sappropriate. These are signs of depression,but I am not at all depressed. There aretimes when even simple everyday thingscan throw me completely. I use self-hypnosis, meditation, and just plain faking

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About MSand My Mind

MSand theMind

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All these suggestions are excerpted from lettersand e-mails sent to InsideMS by people whoare using them to handle their problems. For theviewpoint of professionals, see page 18.• The kitchen timer (“for everything from tak-

ing the clothes out of the dryer to the timeof my favorite TV show”).

• Computer calendars, especially ones that ping. • Calling your answering machine to record a

reminder if you are away from home.• Lists, lists, and more lists. (“A pad and pen-

cil hanging around my neck would help.”) • Keeping a sense of humor. • Post-it Notes—especially on the front door.

(Although many people report using them,our experts think sticky notes can cause con-fusion. They suggest 1 notebook or electronicgadget to be carried with you everywhere.)

• Having a routine. • Being as organized as possible. • Breaking projects down into small

segments. • Writing down instructions. • Taking a break when you feel overwhelmed. • Stretching your brain with puzzles, games,

reading. • Planning.• Enlisting friends, family, coworkers (even

your students, a college teacher suggested):Let them remind you and tell them it’s OK tocorrect you.

• Having a specific place for things andputting things back in their place immedi-ately after use.

• Having a calm corner to go to, in your imag-ination and in your home.

Practical Tips

continued on page 6

to keep a positive attitude—and it works(most days).”—Eileen Tolan, via e-mail

“I can go from happy to depressed toangry in the snap of a finger. My neurolo-gist prescribed antidepressants, whichhave helped, but I find I also need tonotice and adjust my attitude constantly.”—Ann Stauffer, Ohio

“My first neurologist said this was all in myhead, that I would have to have severe MSand I only had mild. When I switched to anew neurologist I learned that a majority ofpeople with MS have some form of cogni-tive problem. Hearing that alone helpedbecause I no longer had the stress of think-ing I was just imagining things.

“Change doctors if you are told thesemental problems aren’t real symptoms of MS!” —Kathy Abbott, North Carolina

“What saves me is my warped sense ofhumor. I talk to my disease. I tell it to beatup on the 90% of my brain that I’m notcurrently using. The honest part of meadmits that I was once very arrogant aboutmy mental abilities. Everything camealmost too easily. MS has taught mepatience and humility.” —Julie Bushinski, Pennsylvania

“I kept feeling I was having trouble with mymemory and it took me a year and a half toremember to ask my doctor about it!” —Jean Evans, via e-mail

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“The thought of asking for help justtears me apart. I’ll do it if I have tocrawl to get it done. My most embar-rassing moment was a ThanksgivingDay when I forgot how to cook theturkey. I took the easy way out andordered dinner from Safeway. Hey, I did-n’t even have to admit I had forgotten.Did somebody say attitude check?” —Name withheld, Washington

“I struggle with things like T-shirtsbecause I can’t figure out which is thefront and which is the back. I brought upsome of the difficulties I was having in mysmall MS support group. It turned out tobe a very tearful meeting as 3 out of the 5of us have these same weird problems.We all felt such a release to discover weweren’t crazy.” —Name withheld, California

“I was in the chess club in high school.In seminary I continued to play andwin, but while serving in my firstchurch I noticed my power of concen-tration starting to wane. This coincidedwith the onset of my MS. Still, I lovecrossword puzzles and during baseballseason I mentally calculate percentagesfrom reports on the radio and checkthe sports page to see if I get it right. Ido. My conclusion? I’m still a math wiz-ard but when it comes to solving thedeeper problems in life, I think I willcall in the experts.”—Milton Lentz, pastor emeritus,United Methodist Church, Minnesota

continued from page 5

The author looks back at 20 yearsof living with MS, in which clinicaldepression has periodically rearedits head.

“D epression Deadly as Cancer” wasa headline in my local newspaper

the other day. Those words were a hauntingreminder of the dark place that held me formany years after I was diagnosed with MS.

I took the news calmly at first and wasdetermined not to let it change my life. I quietly made little changes to accommo-date minor yet ever-present difficulties.But the progressive nature of my illnessmeant continually readjusting my life todeal with increasing disability.

It wasn’t long before I stopped going out at night. Then I stopped going to themall and did my shopping at stores whereI could park directlyoutside the door. Istopped knitting andneedlepointing. When Iwent to restaurants, Iordered finger foodlike fried shrimp so I

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Depression:My Story

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BY SHELLEY PETERMAN SCHWARZ

MSand theMind

wouldn’t needsomeone to cutup my meal. Ikept trying topass as normal,but the sadness Ifelt kept growing.

Within 2 yearsof my diagnosis, Ihad given upeverything extra

in my life. I only did the things that had tobe done. I saved whatever energy I had formy husband, Dave, and our 2 children.

That year I had to quit working. It wasthe saddest day of my life. Ever since I wasa sophomore in high school, I had wantedto be a teacher of the deaf. But I had lostthe ability to finger-spell and sign. I knewI’d never teach deaf children again. Mywonderful work friends tried to keep meinvolved by inviting me to professionalgatherings, but I felt I no longer had a pur-pose in life. I went into a deep depression.

I was 35 years old. What would I do withthe rest of my life? My perceptive daugh-ter, Jamie, was 7 years old when I retired,and she had her own questions: Whowould help Mom when Dad couldn’t helpher anymore? Would Mom have to live in anursing home like Great-Grandma?

I couldn’t get over the sadness I felt, norcould I stop worrying about the future.What scared me the most was that the dis-ease showed no sign of letting up. I criedall the time.

I shared my feelings of despair with my

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Depression is a medical issueas much as a spiritual one.

If you are feeling depressed, you are clearly not alone—depression is a major symptom of MS, one that is frequently misunderstoodand, worse, frequently under-diagnosed andunder-treated.

To learn more, InsideMS spoke with DavidC. Mohr, PhD, assistant clinical professor anddirector of medical psychology at the Mt. ZionMS Center of UC San Francisco, and Sarah Min-

den, MD, assistant profes-sor of psychiatry at Har-vard Medical School,senior scientist at AbtAssociates in Cambridge,and practicing psychiatristat Boston’s Brigham andWomen’s Hospital.

“The rate of depressionin people with MS is veryhigh,” Dr. Minden said.“About 14% of the MSpopulation is currentlyexperiencing a major clini-cal depression, and weestimate that 42% of allpeople with MS willendure a major depressive

BY HENRY HAMPLE

Depression:The Doctors Are In

David C. Mohr, PhD

Sarah Minden, MD

Shelley Peterman Schwarz with Andy,Jamie, and Dave

continued on page 11

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disorder at some point during their lives. Thisclearly signals a research direction, because wedon’t yet know what makes this so in MS. We don’thave the tools we need to sort out the interactionsbetween dysfunctions in the brain and individualreactions to life circumstances. We do know theylink together in a vicious circle. They feed eachother. And we do know that medication can posi-tively affect the brain chemicals, which lifts the bur-den and then gives people a chance to work

through theirlife problemswith a therapist.”

Dr. Mohrsees patientsin individualand family therapy, does neuro-psychological evaluations, andteaches graduate-level psychologycourses. He is currently conductingresearch on the relationship betweenstress, depression, and MS; the treat-ment of MS depression; and helpingpeople with a fear of needles learnhow to self-inject medications.

Dr. Mohr believes there is evidencethat depression is related to immunesystem dysfunction. “When theimmune system is activated—likewhen you get a cold or have the flu—behaviors are activated that look likedepression,” he said. “For example,one of the things that most peopleexperience is feeling they don’t wantto be around other people. They wantto curl up under the covers. Oftenthey have a loss of appetite. These

illness behaviors look like depression. And MS is adisease where the immune system is overly active,especially when a person is having an attack orexacerbation. I believe in some cases depressionmay actually be a symptom of MS—a symptom ofthe immune-system disregulation.”

The interferon-based disease-modifying drugshave been associated with depression in the FDA-required patient information labels of Avonex,Betaseron, and Rebif. There is a great deal of con-

MSand theMind

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troversy about this association and no definitive scientific data.

As Dr. Mohr points out, depression and MS arecommon companions, and the disease-modifyingdrugs have clear benefits for many people.

Medication…and the couch“Anyone with MS who feelssymptoms of depression thatlast more than 2 weeks withoutlifting should be evaluated,”Dr. Minden said. “The symp-toms aren’t always feeling sador crying all the time. Somepeople simply lose their abilityto enjoy things. They are tiredand listless, or prone to out-bursts of anger. It’s commonfor family members to acceptthis as part of MS, or MSfatigue. It is not.”

There are a number of med-ications used to treat depres-sion. “Finding the right drugand the right dose can takesome time,” mused Dr. Mohr,but the picture is muchbrighter today since the devel-opment of a class of antide-pressants called SRIs (or serotonin re-uptakeinhibitors). These drugs have a very low side-effectprofile. Even so, it takes 6 to 8 weeks for any anti-depressant to reach full effect.

Both Dr. Mohr and Dr. Minden stress that psychotherapy is an important part of treatingdepression in people with MS. More than ever, Dr. Mohr said, modern psychotherapy is orientedtoward helping people learn what he calls “coping

skills”: adopting new patterns of thinking, manag-ing one’s fatigue, compensating for cognitive prob-lems, improving one’s ability to interact with otherpeople, and learning assertiveness techniques.

“Our society’s not very kind to people with dis-abilities. It’s easy to get angry,frustrated, or feel hopeless—but these feelings don’t getyou what you want,” Dr. Mohrsaid. “Therapy helps peoplebe more assertive, so they getthe things they need withoutgetting angry or giving up. Wealso know that psychotherapyand medication together aremore effective for depressionthan either of them alone,” heconcluded.

Dr. Mohr is currentlyresearching a new thesis—that in addition to MS causingdepression, depression mayhave an effect on MS: “There’ssome early evidence thatdepression can increase theimmune disregulation associ-ated with MS. So getting treat-ment for depression may beeven more important for people

with MS than it is for the general population.”By and large, he said, “the immune system is

still a mystery.” While researchers concentrateon the puzzle, medication and counseling reallywork for people with depression, both doctorsemphasized.

Henry Hample was managing editor ofInsideMS in 2000.

“There’s some early evidence that

depression canincrease immune

disregulation. So getting treatment

for depression may beeven more importantfor people with MS

than it is for the general population.”—Dr. David Mohr

doctor, who prescribed an antidepressant. Ithought this would be a quick fix—but itwasn’t. It took months to find the rightmedication and to adjust the dosage. I alsostarted seeing a counselor. I rememberwalking down the hall to his office as if 100-pound weights were attached to my legs. Isat down on his couch, reached for a tissue,and cried for the next hour. I returned eachweek and unleashed my feelings.

The combination of medication andcounseling helped me regain some controlin my life and begin accepting my new real-ity. I didn’t want to alienate my friends and

family by always being self-absorbed anddown. At 39, I wanted to be happy again.

I wasn’t the only one in the family whohad been dealing with the effects of MS.Dave wasn’t mad at me or my MS—he justthrew himself into overdrive, did more andmore around the house. Four years aftermy diagnosis, he had lost 20 pounds andhis great sense of humor. He was diag-nosed with clinical depression and was puton an antidepressant. The medication

worked and he returned tohis old self.

When Jamie was 9, shebecame withdrawn anddidn’t want to leave thehouse. She too was diagnosed with clinicaldepression. Thankfully, medication andfamily counseling helped her recover aswell. Andy seemed to be the only onewhose emotional stability stayed intactthrough the years. His temperament hasalways been very laid-back.

Then, 10 years after my diagnosis, theclouds of depression again became too dif-ficult to keep away. Why did the dark comeback? I only know the medical studies forwhich I’d volunteered had not improvedmy condition. I was tired and scared. Onceagain, I cried more and slept less. Ibecame convinced that, at the age of 44, Iwas dying. The middle of the night was theworst because then I was surrounded bydarkness inside and out. I began to spendhours each day planning my suicide.

Then something happened that changedeverything. Jamie, at age 13, found my sui-cide letter, which I had hidden in my desk.She confronted me with it, clinging to me assomeone would cling to a life preserver. Weboth sobbed, and I promised her I wouldn’ttake my life. Her pleas made me realize Idid have a purpose I had lost sight of: I wasMom, and I could never be replaced.

A few nights after that, I was againawake in the middle of the night, trying tofigure what options were still open to me.For the first time in my life I asked God forhelp: “I give up! I can’t do it alone. I needYour help.” The words of a learned rabbiechoed in my mind: “Live each day as if it

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Shelley Peterman Schwarz and husband Dave

MSand theMind

continued from page 8

The MS symptoms that usually grabthe spotlight are the physical

ones—balance, gait, muscle control, blad-der control, vision, numbness. But in thelast decade, light has also come up onhow MS may affect cognition—themind’s ability to store, organize, andrecall information. Memory deficits, aslower response to problem solving, or ashorter attention span have always beenpart of the disease for some people, butthese symptoms were often misunder-stood or downplayed.

“Before 1990, many physiciansassumed MS caused physical disabilitybut left the mind intact,” said Dr. StephenM. Rao, who has been researching cogni-tive aspects of MS since 1981. He is cur-rently a professor of neurology and aclinical neuropsychologist at the MedicalCollege of Wisconsin in Milwaukee.“When people complained to their doc-tors about memory problems, they’dhear, ‘You’re not really forgetful. You’rejust depressed or tired,’ ” Dr. Rao said.Other neurologists chalked the problemsup to the person’s attitude: “If only he’dtry harder, he’d remember.…”

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were your last, and youwill live each day wisely.”If now was to be the bestmoment I was going tohave, and tomorrow

would be worse, I would make the best ofthis moment. I would try to accept eachday as a gift.

I returned to the doctor, who adjustedmy medications, and I began seeing acounselor again. I chose a path for living,not dying.

Now that our children are adults, I’vehad to refocus and find a new purposefor my life. I want to stay on a path forliving. I no longer cut everything out.Dave and I travel, entertain, go to restau-rants and movies. I’m volunteering againand raising money for the National MSSociety. I’m playing bridge with my girl-friends. And I write and speak profession-ally about the challenges of living withMS. Life is good.

Yes, I still have days when my spiritssag and I question what the future willbring, but I live in hope. It wasn’t easy towrite this story, but I’m glad I did. Itreminded me that I won’t give up. I hopemy story has in some way helped you inyour journey.

Shelley Peterman Schwarz is a nationallyrecognized motivational speaker andauthor of 300 Tips for Making Life with

Multiple Sclerosis Easier, a book based onher syndicated advice column, Making LifeEasier. Her other books include Blooming

Where You’re Planted: Stories from the

Heart. You can visit her web site at<www.MakingLifeEasier.com>.

MemoryProblemThese are the two areas where MS

most often creates glitches.

MSand theMind

“Until the late 1980s, gait wasseen as the primary MS problem,”said Dr. Nicholas LaRocca, a clini-cal psychologist who is currentlythe Society’s director of HealthCare Delivery and Policy Research.“Cognition wasn’t studied in anygreat detail in large clinical trials,and many neurologists said MS doesn’taffect memory, period. But now we knowthat isn’t so.”

Experts now know mild problems

are common

Recent research shows that from 40% to60% of people with MS develop somedegree of “cognitive dysfunction”. Mostpeople who are affected have mild prob-lems. Moreover, there is little correlationbetween physical and cognitive symptoms.For example, one person might progressswiftly to total inability to walk but neverdevelop any cognitive problems, whileanother might have poor memory as oneof the very first signs of MS, and neverdevelop severe physical symptoms.

Cognitive problems are not inevitablyprogressive. They are not destined to

worsen steadily once they start. Like motoror sensory problems, cognitive difficultiesmay improve, or become worse, or stayabout the same. As all MS experts agree,variability is the hallmark of this disease.

Serious problems are far less common.Although solid data are not really available,experts guesstimate that 5% to 7% of peo-ple with MS have cognitive problems thatcan be called serious. These include mod-erate to severe impairment in thinking,reasoning, or judgment, major personalitychanges, or a lack of self-awareness lead-ing to inappropriate behavior.

Causes

Cognitive dysfunctions arise when lesions(or areas of MS damage) occur in certainlocations in the brain. In MS, myelin, thematerial that sheathes nerve fibers (or

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andSolving

B Y M A RT H A J A B L O W

axons) in the brain and spinal cord, isattacked or worn away; scarring is oftenleft in place of the healthy myelin. Scien-tists recently learned that the underlyingnerve can also be damaged, even severed.MS lesions may develop anywhere in thebrain or spinal cord, but when they appearin the cerebral hemispheres, the “thinking”part of the brain, some thinking functionscan be affected.

Where the glitches are

“The vast majority of people have relativelymild problems, mostly in the area of mem-ory and attention,” Dr. Rao said. “They’remore nuisance problems than seriouslydisabling ones.” These are the most com-mon symptoms:• Recent memories are more difficult to

recall. A person can’t remember whatshe ate for breakfast or a phone numberthat she learned last month, but has notrouble remembering phone numbers ofchildhood friends or the Social Securitynumber that she’s had for 20 years.Most people with this symptom can stilllearn and remember new information,but recall will take a little longer.

• Fluency with words may be diminished.The person searches for a word. It’s onthe tip of the tongue, but he just can’tthink of it. This too is a recall problem. Itis not the same as the changes in voicequality or a slower rate of speech, whichare associated with physical changescaused by MS.

• When a lot of information is coming allat once, processing may take longer. Ifseveral people talk at once, or the televi-sion or radio is on, or even if a single

speaker talks too rapidly, the barrage ofinformation can be too overwhelmingfor the person with MS to sort out.(Eliminating distractions like back-ground noise will help.)

• Judgment and problem solving may beslower or less reliable. Some people withMS-caused cognitive problems have diffi-culty analyzing a situation, coming upwith a solution, and carrying it out.Sylvia White, a 42-year-old Philadelphia

woman, related a common example of thisproblem and how she dealt with it: “I weara different jacket depending on theweather. One morning I’d pulled the doorclosed behind me, and it locked just as Irealized my keys were in my other jacketpocket. No one else had an extra set ofkeys. My son’s set doesn’t include the keyto the top lock.

“I worried that he wouldn’t be able to getin when he got home from school,” saidMs. White, who has had MS since 1985.“When I have a problem like that, I can getfrustrated because I know I can solve it

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but I just can’t figure out the steps at themoment. I’ve learned that I have to stopsaying ‘I can’t do this; I can’t do this.’ Ihave to slow down my thinking, and thenmy brain will work. I can find a solution if I say to myself, ‘I think I can do this.’But I need some time to get past the frustration.”

Once she took time to calm herselfdown, Ms. White asked a neighbor forhelp. He had a ladder. He climbed throughan unlocked second floor window andopened the front door from inside.

Common misunderstandings

Some common misunderstandings aboutcognitive problems and MS need to beclarified. One is the confusion withAlzheimer’s disease.

◆ Not Alzheimer’sAlzheimer’s is an entirely different diseasefrom multiple sclerosis. Dr. Rao illustrated:“People with Alzheimer’s have difficultystoring information from moment tomoment. They can’t use a notebook as amemory aid, because they won’t be able toremember why they’re even carrying it.MS-related problems tend to involveretrieving information. For a person withMS-related problems, a notebook or othergadget really works to make up for poormemory. The person with MS is able tostore and retrieve information but mayrequire more time to do so or may besomewhat less accurate in the recollection.”

◆ Not loss of intellectAnother misunderstanding centers on intel-lectual ability. MS-caused cognitive prob-

lems don’t mean thatintelligence hasdeclined. However,some people may notbe able to think as flex-ibly as they once did.They may be less responsive to feedbackfrom other people and find it harder toadapt to changes in routines or environ-ments. They may need time and a support-ive atmosphere to solve challenges.

◆ Not mental illnessCognitive problems are sometimes con-fused with mental illness or emotionalproblems. Cognitive difficulties involvespecific thinking processes. Unruly emo-tions may arise as a psychologicalresponse to having a frustrating chronic ill-ness—especially if cognitive symptoms arepresent—or they may result from MSlesions in a specific part of the brain.

Role of MRI

Magnetic resonance imaging (MRI), whichtakes pictures of internal organs without X-rays, is the definitive way to determine

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MSand theMind

where MS lesions are, but most expertssay that an MRI scan isn’t all that helpfulfor cognitive issues. If problems like for-getfulness or poor concentration are inter-fering with work or family life, neuropsy-chological tests may be a better approachto effective management. These tests mea-sure “cognitive performance” such asrecall and attention. They are far moreextensive than the 5-minute “bedside”assessment neurolo-gists use, as they aredesigned to uncoverthe subtle problemstypically caused by MS.A full assessment mayrequire 2–5 hours, andit is considered themost accurate way toevaluate cognitivestrengths and weak-nesses. However, thereare other avenues toexplore with a referring physician if neuropsychological testing is impractical.

Three kinds of specialists can help

According to Dr. Rosalind Kalb, a clinicalpsychologist who has specialized in MS forsome 20 years, 3 different kinds of special-ists can evaluate cognitive dysfunction: aneuropsychologist, a speech/languagepathologist, or an occupational therapist.“Although these 3 specialists use somewhatdifferent assessment tools, they share theability to identify cognitive changes thatare affecting a person’s daily life,” sheexplained. “Sometimes the professionalwho tests you is determined by who isavailable in your part of the country.”

Retrain or compensate?

Rehabilitation techniques long used forpeople who’ve had head trauma or strokemay enhance cognitive functions for peoplewith MS. These techniques are as sophisti-cated as computer-based training in whicha person follows a repetitive on-screentask, or as simple as exercises using illus-trated cards as memory joggers. The prin-ciple involves retraining to improve func-

tion by strengtheningmental patterns.

The most usefulapproach is compensa-tion, which means mak-ing adjustments for spe-cific losses. “For copingwith mild to moderatecognitive problems, trycompensation strate-gies first,” said Dr.Kevin Riley, a psycholo-gist in the MS program

at Temple University Health Sciences Cen-ter in Philadelphia. InsideMS readers sentmany suggestions for handling everydaycognitive problems, and most of theminvolve compensation. (See page 5. Thesidebar on page 18 presents compensatorytechniques suggested by the experts.)

A solid rehab program usually mixesretraining and compensation, and will betailored to the needs and the strengthsrevealed in an individual’s evaluation,according to Dr. Kalb.

No medications have yet demonstratedlong-term success in reducing cognitiveproblems, although a recent, small study of Aricept (donepezil hydrochloride), adrug that improves memory in people

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with Alzheimer’s, has shown somepromise in people with MS. Drugs do playa role in treating depression, moodswings, and fatigue—all symptoms thatcan complicate cognitive issues.

An ounce of prevention

Can cognitive problems be prevented?The question is still open. But researchinvolving the disease-modifying drugs (Avonex,Betaseron, Rebif, andCopaxone) indicates thatall 4 slow down the rate atwhich new lesions developin the central nervous system. If fewer lesionsdevelop, fewer may occurin the critical parts of thebrain that affect cognition.

Dr. Jill Fischer of theMellen Center for MS Treat-ment and Research at theCleveland Clinic Foundation reported thatsome disease-modifying medications havebeen shown to affect cognitive functionsthe way they affect physical functions.“They do not reverse cognitive problems,”she said, “but they can slow the rate ofprogression, and that’s reassuring.” Andfor people with progressive forms of MS,she noted, oral methotrexate may provide“a modest beneficial effect” on cognitiveproblems, as was indicated by Dr. DonaldE. Goodkin in his recent research.

Family matters

Psychologists, physicians, and people withMS all agree that understanding and sup-port by family members are essential. Fam-

ily members shouldn’t assume that the per-son with MS isn’t trying hard enough ordoesn’t listen or pay attention.

“Family members need to recognize that these problems are not under the per-son’s control,” Dr. Rao said. “You wouldn’tblame a person for having problems walk-ing because of MS, so don’t blame him or her for forgetfulness. A person who’s

experiencing memory lossoften feels guilty about it.That’s another reason fam-ily members need to be astolerant and supportive aspossible,” he added.

Taking action at work

“Most people wait untilthere’s a crisis to talk totheir employer about theircognitive problems,” saidDr. LaRocca. “That’s prob-ably a mistake. It may be

wiser to try to open a dialogue with yoursupervisor before your performance isaffected. You will have to educate youremployer about the nature of the prob-lem. First, an employer may assume theproblem’s going to get worse, and itdoesn’t for many people. Second, thisdisability is covered under the Americanswith Disabilities Act, so if you need anaccommodation to remain productive inyour job, you willneed to take someaction.

“The Society recom-mends that you getadvice on workablesolutions and some

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“The person with MSis able to store andretrieve information

but may requiremore time to do so

or may be somewhatless accurate.”

—Dr. Stephen Rao

MSand theMind

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“What you’re trying to do is replace mem-ory with organization.”

—Dr. Nicholas LaRocca

• Keep a daily diary or notebook. Write downall appointments, reminders, and lists ofthings to do in one place. When you make orreceive a phone call, note the date, time,whom you spoke with, and a short reminderabout what was said. Get in the habit ofreferring to this diary routinely, perhaps atthe same time each morning and again in theevening for tomorrow’s schedule.

• Post a large family calendar in a prominentplace—maybe the refrigerator door—whereeveryone in the household writes down theiractivities and schedules. Think of this cal-endar as “communications central” andrefer to it daily. Check things off as they arecompleted.

• Use a wristwatch with a beeper, and set it toremind you of events. People who must takemedication at certain intervals find this espe-cially useful.

• Electronic gadgets like the Palm Pilot areeffective for lists, agendas, important phonenumbers, and addresses. Or try other organi-zational gizmos such as a Day Runner, Filo-fax, or laptop computer—whatever works foryou. Post-it Notes are useful, but they can getunstuck. Moreover, the habit may get out ofhand. “I stick them up everywhere, but I mayforget to throw them away once I’ve com-

pleted whateverI’ve written onthem,” saidSylvia White.“If I don’t tossthem, I wonderlater, ‘Did I do thatalready?’”

• Keep impor-tant things ina designatedplace. Keepyour dailydiary onyour nighttable ornext to thephone, your keys in a particular drawer or ona hook near the door. Consistency and routinemake it easier to remember where things are.

• Design a master grocery list, with all theitems you normally need, and make multiplecopies. Before going out to shop, review thelist and check off the items you’ve run out of. Try to stay calm when memory fails. “It’s

normal to tense up or feel frustrated if you areforgetting or losing something, but when youdo, you switch out of the problem-solving modeand into the angst mode,” Dr. LaRocca noted.“So take a few moments to calm down. Do slowbreathing or other relaxation exercise. Yourmemory will usually clear.”

Palm Pilots and Post-it Notes:What the experts say

help preparing for negotiation beforeyou speak to your employer. The Soci-ety has information on job retentiontechniques and the protections the ADAprovides. Call our 800 number first.”

A vocational counselor or occupationaltherapist may be your best resource ifyou need help minimizing a job problem.Dr. Rao cited this example: Workers at aMilwaukee brewery are trained in manydifferent skills and are switched from taskto task to avoid boredom. The brewerylikes this policy because any one workercan fill in for another. But switching tasksfrequently became frustrating and coun-terproductive for a worker with MS-caused cognitive problems. He’d beentrained in 7 different tasks, but he beganto forget them when he was moved fromone to another. His union, a vocationalcounselor, and his employer worked withhim to find a simple solution. Theystopped the musical chairs, kept him atone task, and he performed it well.

In addition to family and employmentsupport, the Society offers peer support,educational programs, and self-helpgroups where people can find under-standing and practical advice. Talkingwith a psychotherapist may help controlanxiety or other problems that so easilyboil up along with cognitive difficulties.

The bottom line is that MS can affectthe mind. Anyone affected by such symp-toms needs to learn the facts about themand the ways to handle them effectively.

Martha Jablow is a frequent contributorto InsideMS.

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Some peoplecall these

MS symptoms“emotional inconti-nence”. Joella Vreeland calls themembarrassing:

“At lunch hour a colleague wastelling us that hewas very disap-pointed as he had applied to the reserves and been rejectedbecause of a heart condition. Ilaughed.

“ ‘It’s not funny!’ he said—and Iapologized. But why had I laughed? Iwas as puzzled as he was.

“I do a lot ofspeaking—oftenfrom the podium—at my church. I wastelling a story abouta pine tree that haddied. And I started

An Oceanof Emotion:Mood Swings, Anger,

and UncontrollableLaughing and Crying

BY CYNTHIA ARNOLD

Joella Vreeland

MSand theMind

continued from page 17

crying—could not controlit—and sat down.

“ ‘Well,’ said my friendlater. ‘It was a sad story.’

“ ‘Not that sad!’ I replied.I have MS, and I was expe-riencing a problem. I couldno longer speak about mymother, my son, or evenmyself, without getting sochoked up that I couldn’tcontinue. Though this wasnew for me, I had readabout it in an MS publica-tion. Someone had referredto it as ‘emotional inconti-nence’. I remembered thatit meant overreaction:laughing when it wasn’tthat funny and crying whenit wasn’t that sad.”

“ ‘Emotional incontinence’ is not agreat term, even though it captures theissue,” said Dr. Sarah Minden, assistantprofessor of psychiatry at Harvard Med-ical School, who sees people with MS atBrigham and Women’s Hospital inBoston. “It’s embarrassing, distressing,and stressful for people with MS to lackcontrol over their emotions.”

For best treatment, determine

the cause

According to Dr. Minden, it’s difficult toknow what causes these emotionalsymptoms—uncontrollable laughing andcrying, angry outbursts, or rapid moodswings. They could be the result oflesions in the brain and abnormalities inthe brain chemicals directly caused by

MS. They could just as easily be due toemotional disorders or situational prob-lems. Dr. Minden believes it is veryimportant that the cause of an emotionalproblem be clarified, because a diagno-sis will determine which treatmentapproach should be most effective. Acorrect diagnosis can be made by a neu-rologist or psychiatrist who is familiarwith these kinds of MS symptoms. Onlythen can the right combination of med-ications, counseling, and, possibly,behavioral therapy be prescribed.

Dr. David Mohr is assistant clinicalprofessor and director of medical psy-chology at UC San Francisco’s Mt. ZionMS Center. Dr. Mohr believes that somepeople may be predisposed to develop-ing these kinds of problems becausethey have certain genes.

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Blame and shame

Dr. Randolph Schiffer has a lifelongprofessional interest in the behavioralaspects of MS. He is chair of thedepartment of Neuropsychiatry at TexasTech University. “Any cognitive loss isanxiety-producing,” he said. “Peoplemay not understand why they’re havingtrouble functioning at work or at home.The pattern can be subtle. It’s easy toblame yourself for not doing things aswell as you formerly did.

“Our culture is more tolerant of phys-ical disability than of mental impair-ment, in many situations,” Dr. Schifferadded. Both the person with mental oremotional symptoms and the peoplearound her or him may be strugglingwith a sense of shame.

“We tend to see emotions as separatefrom our bodies, but they are not. It’simportant to acknowledge that emotionsare biological processes,” Dr. Mohr said.“How you think about things influencesneurotransmitters in the brain. There isincreasing evidence that how people feelmay affect their MS directly. The goodnews is that people can learn to cope withemotions. You may need a mental healthcounselor to help you identify the patternof your thoughts and behaviors and learnhow to change the ones that contribute to

stress or depression.”

Cynthia Arnold, whoherself has MS, is afreelance writer and anEnglish professor at acollege in WesternMassachusetts.

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MS-related cognitive problems can be hard to detect and evenharder to admit. Denial can be a real devil for people with MS,their friends, family members,

and their employers.

“Oh my gosh, I lost my car keys!”Maureen panicked. Then she

realized that she’d given them to herfriend who was presently driving her car.Maureen was sitting in the passengerseat. Forgetting things happens a lot toher. Everybody forgets things, shethought. She did not believe she had cog-nitive problems.

Maureen was an elementary schoolteacher before she was diagnosed withMS in 1988. She left teaching becauseshe was “tired of writing lesson plans andtired of trying to handle 30 students.”She went to work doing light filing for alaw firm. Eventually,she had to resign.She said the reasonswere a few falls, thefatigue of a 9-to-5routine, and the longdistances she needed

The Devilof Denial

B Y K A R E N J . Z I E L I N S K I

MSand theMind

to walk. “I guess my physical limita-tions probably affected my workquality,” she said.

But her boss at the law firm saw itdifferently: “Maureen’s cognitiveability has gradually decreased in thepast 2 years. Her short-term mem-ory is the most obvious area. Whengiving her instructions...each wordhas to be written out in order for herto complete the job. She does nothave the ability to recall details of aconversation that just took place.This has affected not only her worktasks but daily personal tasks aswell.”

Maureen’s boss helped her file herSocial Security disability claims andfind housing, and got her started ona regimen for completing financialtasks like paying bills. Even so, shedid not believe she had cognitiveproblems—until she read an evalua-tion of her work at the law firm.

Why is it hard to admit to having

cognitive problems?

“People are reluctant to admit tocognitive problems because theyoften feel these problems make themless of a person, almost as if theseproblems separate them from others. Theyoften feel helpless,” said Dr. Jaclynn Faffer,who is executive director of Ruth RalesJewish Family Service of South Palm BeachCounty, Florida. “We accept and know howto respond to the elderly who have cogni-tive problems, but when a person is youngor middle-aged, we feel less comfortable.”Dr. Faffer said that today’s society has

begun to accept physical disability, butthere is more stigma when the mind fails toprocess information well. This only adds tothe difficulty of accepting that a problemwith the mind is real.

Research indicates that cognitiveimpairment may be the most significantfactor in the high unemployment rateamong people with MS. Even more than

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problems with walking or fatigue,changes in intellectual functioning canresult in premature departure from theworkforce.

Is there hope?

Yes—if the person is able to face the problem and take some action. “Take adeep breath, and see a specialist who cangive you tools to help you cope in yourlife,” Dr. Faffer advised. “It’s important toknow that there are techniques one canuse to enhance cognitive function anddevelop positive thinking habits,” sheemphasized. “Remember that knowledgeis power. With more self-awareness, cop-ing can improve.”

How do I know I need help?

“Do you find activities such as keepingtrack of appointments, remembering con-versations, balancing a checkbook, or stay-ing focused on a task without getting dis-tracted becoming more difficult? These aresome common MS-related problems,” saidDr. Rosalind Kalb, a clinical psychologistand director of the National MS Society’sProfessional Resource Center. Dr. Kalbadded: “It is important to talk with yourneurologist. However, a person with MSmay know that something is wrong longbefore a neurologist is able to detect anysignificant problems in a standard neuro-logical exam. The person who is con-cerned about intellectual functioning needsto be proactive and request an in-depthevaluation. Ask for a referral to a specialistwho can carry out this evaluation.”

Dr. Kalb always encourages people notto panic: “From what we know, cognitive

problems tend toprogress very slowly,and are relatively man-ageable with remedialinterventions. It isimportant to preparefor the future with habits and techniquesthat can be learned in rehabilitation,” she said.

Life goes on

Maureen was able to admit her cognitiveproblems when her boss helped her doso, but neither of them realized that shemight have benefited from testing andtargeted rehabilitation. Even so, Maureenlives independently, is active in a churchprogram, enjoys gardening, and readsextensively. She has found that sharingher memory problems with her familyand friends, keeping a daily planner, writ-ing lists, and using her wry sense ofhumor help her manage.

“Don’t forget the resources the NationalMS Society has to offer!” she remindedus. To people who think they have somecognitive problems, Maureen said: “Seeyour neurologist and talk honestly. Giveall the details.” ■

Karen J. Zielinski is a Franciscan sisterand heads the communications office for

the Sisters of St.Francis of Sylvania,Ohio. Sister Karenwrites 2 differentmonthly advicecolumns and servesthe Society as anactive volunteer.

SPRING 2000 ■ REPRINTED FROM InsideMS 23

MSand theMind

• The National Multiple Sclerosis Societyis dedicated to ending the devastatingeffects of multiple sclerosis.

• For information1-800-FIGHT-MS (1-800-344-4867)Web site: www.nationalmssociety.org

The National MS Society…One thing people with MS can count on

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