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ABOUT

SYMPTOMS AND MSPeople with MS may notice that they are having trouble doing

everyday things... putting on their socks, making a sandwich, or walking

the dog. Their bodies may feel "funny" ordifferent. These troubles and discomforts arecalled "symptoms." MS symptoms can bevery mild, very serious, or somewhere in-between. They can come and go. Sometimesthe symptoms disappear for a few days,weeks or months, and then come back again.

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ISSUE #3

In response to sugges-tions from our read-ers, we've decided tochange the name ofour newsletter fromNervo's News to "Keep S'myeliin".Get it ? We think it's afunny way to say"Keep Smiling" andkeep reading ournewsletter! If youdon't remember whatmyelin is, be sure toask your Mom or Dad.(Many thanks to ourfriends at theConsortium of MSCenters for the newname idea!)

A NEWSLETTER FOR KIDS ABOUT MULTIPLE SCLEROSIS

SYMPTOMS AND MS

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Feeling veryt i re d .Have you ever stayed upvery late? Remember howtired you were? Manypeople with MS feel tiredlike that all the time ,even if they get enoughrest.

Feeling pinsand needles. Remember the lasttime you sat on yourleg the wrong way andyour foot fell asleepand felt tingly andfunny?

Sometimes MS givespeople that pins-and-needles feeling in theirarms, legs, or otherparts of their body .

Havingweak armsand legs. Some people with MS find that their arms and legs feel ver ytired, as if there wer eweights tied to them. Itmakes it hard to move .

COMMON

Having trouble seeing. Did you ever try to look through some -one else's glasses? Some people withMS have blurry vision or see two ofeverything (double vision).

Losing your balance.Have you ever made yourself dizzy b yspinning around in a circle? It was har dto walk straight afterwards and keepyour balance, wasn't it? Sometimespeople with MS lose their balance likethat, even though they don't feel dizzy .

There are many different MS symptoms .Ask your Mom or Dad about thekinds of symptoms he or she is having. Noteveryone with MS has the same ones .Learning about MS symptoms and talkingto your parents about them can make you feel better .

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My dad's symptomsgot worse and hehad to go the hospi-tal. Why did he haveto go? Signed, Sam

Dear Sam:Your Dad may have hada flare-up or exacerbationof his MS that made hissymptoms worse. He mayhave needed special medicines to treat thesymptoms. It is easier forthe doctors and nurses totake care of him in thehospital than at home. Ihope you got the chanceto visit while he wasthere.

My Mom fell downwhen she was walk-ing the dog. It wasembarrassing andscary.Signed, Jana

Dear Jana:Sometimes people withMS lose their balance andfall down. Your momdidn't fall on purpose andshe probably felt a littleembarrassed and scaredherself! Talk with yourMom. Tell her how youfeel. She may be able totell you more about whathappened and how she'sfeeling.

MEDICINES AND MSWhen you have a coldor fever or cough, yourMom or Dad may giveyou medicine to makethe sickness get better.Unfortunately, we don'tyet have medicines tomake MS go away.But there are medicinesthat can help! Somemedicines make MSsymptoms feel better.Other medicines help toslow down the MS sothat it will cause fewertroubles. With some ofthese special MS medi-cines, your parent mayhave to take shots witha needle. Many peoplelearn to give themselvesshots; others have some-one in the family help.Your parent may feelcomfortable with you inthe room or he or shemay prefer privacy.Getting a shot may lookscary at first, but itdoesn't hurt much.Sometimes people feel alittle sick for a day ortwo after the shot, butit's usually not too bad,and the medicine ishelping to control MS.

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BALANCE CLUMSY DIZZYMOODINESS NUMBNESS PINS AND NEEDLESSEEING TALKING TIREDTREMBLING WALKING WEAKNESSSee if you can find the important message in this word search. What do we know about symptoms and people with MS?

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S.Y.M.P.T.O.M.S OF M.S.

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Anne is an adultnow. She was raisedby a parent withMS and wants toshare her stor ywith you.

A s long as I canremember, MS has beenpart of my life. MS didmake some things moredifficult for me, mybrother, my dad, andcertainly my mom, butit also gave us a lot. Itgave us the opportunityto spend more timetogether (probablybecause it took longer todo just about every-thing!) It also made uscloser to each other.Even though MS has

been part of my family,this is the family I love.And to me, that's nor-mal.

I don't remember theexact day my Mom wasdiagnosed with MSbecause I was only threeyears old. But I do

remember how itchanged her body. Shestarted using a canewhen I was in firstgrade, and she neededan electric scooter whenI was in fourth grade. Sometimes I was scaredby all these changes. Could she still take careof me? Would we have to stop having fun together?Stop going on vacations?Stop being a family?When I think about whatactually happened, I real-ize that we were definitely still a family with a Momwho took care of us--anda family that had a lot offun!

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Even though my Momcould't do all kinds ofthings she used to do, Ididn't really noticebecause she never made usfeel as though we wereleaving her out. Whateverwe were doing, my Momwas right there with us.She always asked us ques-tions about our activities,

sports, friends, school--whatever we wereinterested in. Hersupport made it easi-er for us not to feelbad that she couldn't do everything we could do.

I always knew mylife was different in

some ways from myfriends' lives. After all,how many fourth gradersknow how to do laundryor make dinner? I wishsomeone had told me itwas OK to get mad at MSsometimes. Looking back,I guess I had a lot of feel-ings about my Mom's MS.I've been angry sometimes,sad sometimes, and evenscared. But I have alwaysbeen proud. My Mom hasalways been a great Mom.

ISSUE #3

Children often have dif-ficulty understandingMS symptoms—partic-ularly ones that are noteasy to see, like sensorychanges, weakness, andfatigue. You can use thefollowing activities toinitiate conversationswith your child aboutthe symptoms you areexperiencing. Having abetter understanding ofyour symptoms mayhelp allay your child'sfears and confusion.

Explain to your childthat these activities will

give a sense of whatyour symptoms feellike. It will be a similarfeeling, but not exactlythe same. After eachactivity, ask your childto tell you what it feltlike to "try on" thesymptom (frustrating,funny, clumsy, scary…)Some children may gig-gle and find the activi-ties to be fun. Otherschildren may feeluncomfortable, fright-ened or sad… Be alertto your child's emotion-al reaction, so you cantailor your response.

Have your child put onankle weights and try towalk up the stairs. (Ifyou do not have ankleweights, a long tubesock filled with sandand tied around theankle is an easy substi-tute.)

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1. What does it feel like to have troublemoving your legs?

ISSUE #3

PARENTS' PULL OUT

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TRYING ONSYMPTOMS

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Have your child put ona set of wrist weightsand try setting thetable, writing a letter, orgiving you a hug.

Have your child trysome routine activitiesusing only one hand,such as buttoning ashirt or making a bed.

Give your child a pairof work gloves or thinwinter gloves. Haveyour child remove thewrapper from a candybar or pick up kernelsof popcorn from thetable while wearing thegloves.

Take a pair of sunglassesand smear Vaseline overthe lenses. Have yourchild wear the glassesand then try to read abook or make a peanutbutter and jelly sand-wich.

5. What is it like to dothings when your armsfeel weak or heavy?

4. What is it like todo things with only onehand?

2. How does it feel todo things when your fin-gers are numb?

3. What does theworld look like when youhave blurred vision?

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The DisabilityAwareness Activitiesare designed to helpyour kids imagine whatsome of your symptomsmight feel like. "Tryingon" symptoms may bea little frightening forsome children; othersmay think it's a veryfunny game.

Sometimes, your feel-ings about the symp-toms you are havingmay be a bit out ofsynch with the feelingsyour kids are express-ing about them. If, forexample, you are feel-ing sad or scared aboutthe numbness in yourhand or the weaknessin your leg, and yourchild begins to giggleand joke while doingsome of the activities,you may start to feelhurt or angry. Try toremember that thepoint of the activities isto help children under-stand the symptomsand feel comfortabletalking about them.You can talk aboutserious feelings—bothyours and theirs—evenwhile sharing some giggles.

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As you talk about ournewsletter's new name,be sure your childknows what myelinmeans.

As you read "About:Symptoms and MS"with your child, youmight take the opportu-nity to talk about yourown symptoms and theways they are the sameor different from theones in the article. Besure to mention that notwo people with MShave exactly the samesymptoms, and no oneperson has the samesymptoms all the time.This can be difficult toexplain to young chil-dren who tend to seethings in a fairly con-crete,"black and white"sort of way. They findit hard to understandwhy their parent feelsOK sometimes and notothers, particularly ifthe symptoms are notvery visible.

Parents sometimes findit difficult to talk aboutMS symptoms with theirchildren. They wonderwhen to talk aboutthem, and how todescribe the symptomsin ways that are infor-mative without beingscary. Some parentsalso find that their ownfeelings of anxiety orsadness get in the way.We hope this issue ofKeep S'myelin will giveyou ideas for how tomake this conversationwith your kids easierand more comfortablefor all of you.

HOW TO ENJOY"KEEP S'MYELIN"WITH YOUR KIDS

As with other impor-tant MS topics, you willprobably need to havemore than one conversa-tion about your symp-toms. Not only will yoursymptoms ebb and flowover time, but yourchild's need for informa-tion will also change ashe or she gets older.Simple explanations areusually sufficient foryoung children. Onceyou have opened thedoor to discussion bytalking and sharing,your kids will feel freerto ask more questions asthe need arises. Keep inmind, as well, that eachchild may have a uniquelearning style. Onemight want to ask a lotof questions, anothermight want to draw apicture or act out a littleskit.

"Disabled Parenting Today"is a Canada-based, internationalnewsletter that provides supportand information to parents with adisability. A variety of subjects anddisabilities are covered in eachissue. Look for articles on gettinginvolved with your child's school,

sharing a modified vehicle with your child, andaccessing resources around the world. The bi-monthlypublication is available for $20 in the United States.Check out their website at HYPERLINK“http://www.sp-dpt.com” For information on books,chat rooms, and select articles, or for a subscriptioncontact:

Sullivan Publishing Inc.Box 3827Courtenay, BCCanadaV9N 7P2

You may find thatconversations aboutMS—or any difficulttopic, for that matter—are easier when you andyour child are engagedin some other activitylike riding in the car,playing a game, or tak-ing a walk. This diffusessome of the tension andallows everyone to feelmore relaxed. As you

talk about symptoms ofdifferent kinds, you canexpand your conversa-tion to include otherchildren or adults withdisabilities whom yourchild might have met orseen. This is a goodopportunity for yourchild to try and guesswhat these other peo-ple's feelings and experi-ences might be.

RESOURCE

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Keep S'myelin is a quarterly publication forchildren with parents or other relatives with multiplesclerosis. It is produced by the National MultipleSclerosis Society and funded by grants fromBerlex Laboratories and theAmerican Legion ChildWelfare Foundation, Inc. The NationalMultiple Sclerosis Society is proud to be asource of information about multiple sclerosis.Our comments are based on professional advice, pub-lished experience and expert opinion, but do not repre-sent therapeutic recommendations or prescriptions. Forspecific information and advice, consult a qualifiedphysician.

The National Multiple Sclerosis Society does notendorse products, services, or manufacturers. Suchnames appear here solely because they are consideredvaluable information. The Society assumes no liabilitywhatsoever for the contents or use of any product orservice mentioned.

EditorsJennifer Ricklefs, MSDebra Frankel, MS, OTRRosalind Kalb, PhD

AdvisorsDavid Rintell, EdDVicki Dodge-Pamplin, CIRShannon Stapleton, MSWKevin Dougherty, MADebbie Wall, MPADeborah Miller, PhDElly SchottmanGeorge Garmany, MD

Design/IllustrationsClaude Martinot Design

The mission of theNational Multiple

Sclerosis Society is to end the devastating effects

of multiple sclerosis.