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ISSUE #11/FEELINGS

A NEWSLETTER FOR KIDS ABOUT MULTIPLE SCLEROSIS

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If your mom or dad—or someone elseyou love—has MS, youprobably have lotsof feelings about it.Feelings about MS can be different for different people. Sometimes

MS might make youfeel angry, for exampleif your mom or dadcan’t play with you ordrive you somewhere.Sometimes you mightfeel sad if your parentisn’t feeling well, orscared if he or shehas to go to thehospital. Sometimesyou might feel gladbecause you loveyour mom or dadand enjoy doing funthings together.

Sometimes the hardestthing about feel-ings is sharingthem with oth-ers, but talkingabout feelings

can be helpful. It canmake you feel better andbring you closer to thepeople you care about.

Having feelings is kind oflike having a heavy back-pack with lots of stuffinside. You can’t reallylighten it or tell anyone

what is in yourbackpack if you

don’t look in thereyourself. And it can

get too heavy if youdon’t clean it out once ina while. Make a list of the

feelings you are carrying in your feel-ings backpack. You cando it in your head, ona piece of paper or in

a poem or drawing. You can alsotry the

‘Feelings Activity’ inthis issue. Share yourpicture with someoneyou trust—like your mom or dad. This willhelp make your feel-ings backpack feel alittle bit lighter.

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There are lots of otherpeople you can talk to,such as teachers, brothersand sisters, doctors,school counselors, grand-parents and friends.

Talking about your feelingsis the best way to learnmore about yourself andfind help for your worries.Don’t be afraid to talk tosomeone the next time youwant to sort out what isin your feelings backpack.You are not the only kidwho has lots of feelingsabout MS!

Multiple sclerosis (MSfor short) is a diseasethat affects the centralnervous system (thebrain, optic nerve andthe spinal cord). Thebrain is like a computerthat tells the body whatto do. The spinal cord islike a thick wire attachedto the computer.Messages travel from thebrain, along the spinalcord, to the other partsof the body.

When a person has MS,the covering (myelin)that protects the nervesgets damaged. Scarsform where the myelin isdamaged. As messagestravel from the brain,they sometimes get stuckor slowed down by these

scars. When this happens,the other parts of thebody can’t always dowhat the brain is tellingthem to do.

Sometimes people withMS have trouble seeing.Sometimes their armsand legs feel weak, ortheir skin feels “tingly”(like pins and needles).Sometimes they lose theirbalance, or sometimesit’s hard to walk. MSproblems like these arecalled symptoms.Symptoms of MS cancome and go…we don’tknow exactly why.Sometimes you don’t evennotice the symptoms. At other times they are pretty obvious. It’s hardfor a person with MS to know from one day tothe next how he or shewill feel. That is why we say that MS is unpredictable.

Interesting Fact:

Multiple means many.

Sclerosis means scars.

So, multiple sclerosis

means “many scars.”

MS

Brain Spinal Cord

Optic Nerve

Nerves

Spinal Cord

Myelin

MS Scar

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Find someone:� Who is easy to talk to.� Whom you like and trust. � Who listens to your feelings.

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When I was five yearsold, my mom lost her eye-sight in one eye. So, wewent from one doctor toanother and after manytests, we found out shehad MS. I remember thatshe was happy to finallyknow what was happen-ing with her body. I can’tsay we are happy she hasMS, but at least we can dothings to make things easi-er for her. We go to herdoctor’s as a family some-

times. Her doctor isso cool. He always sits down with us to make sure we

understand what is happening.

Sometimes after weleave, I have questions.My mom stays informedabout MS. Working in ahospital for years hashelped her to be able toanswer my questions. Mymom’s faith in God andher doctor are strong.That makes me feel thereis always hope.

My favorite parts of theday are spent with mymom. She swims a lot andplays lots of games. Thepart about MS that ishard is watching her takea shot every day. Shedoesn’t complain, so whyshould I? But I don’t likeanything that hurts her. Iknow the most frustratingpart of MS for her is thatshe is so tired. With medi-cine, this is a little better.

When she is really having a hard time,my grandparents

and church family come to help. I do more chores than most of my friends, but that’s OK. That’s what family is all about. I would do anything to help my mom.

Sean is eight years old and inthird grade. He lives in thecountry and has two sisters,Sarah and Victoria. He has adog, a barn cat, a gecko anda few other reptiles as pets.He likes to draw, read, domartial arts, go camping andsnorkeling, and do scienceexperiments. He also loves toplay chess and other games.

WHAT HAPPENSWhen MS Joins the Family?

Living with MS can bring changes toevery member of the family. Somechanges may be big, others might besmall. Here are some of the changesthat kids sometimes see:

Your mom or dad may feeldifferent from one day to the

next. For example, having a lot of energy one day and feeling very tired the next. It’s a good idea to have back-up plan for days

when your parent doesn’t feel well.

When people don’t feel good, theysometimes get cranky. You may find thatyour mom or dad acts grumpy some-times. If you get worried about that, besure to talk it over with them or withanother adult you like a lot.

Your mom and dad may also seem moreworried than usual. This can happenbecause no one is sure what to expect.If you start to get worried too, be sureto let them know. Worries feel betterwhen you talk about them.

When someone in the family has MS,everyone else may need to help.Sometimes moms and dads trade jobsand responsibilities because the parentwith MS can’t do the things that he orshe used to do. Kids may be asked to domore chores. While kids tell us that theydon’t always like the extra chores, theyalso say that helping theirparent with MS makesthem feel proud.

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JOKES TO SHARE

F U N I D E SAFOR YOUR FAMILY

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Tasty Ladybugs

Doing an activity together-cooking, coloring, crafts,reading- offers an opportu-nity to talk to your child.Sometimes while hands arebusy with an activity, con-versation flows more easily.Try this fun activity withyour child:

Before You Begin�Spoon the peanut butter into the sealable plas-tic bag. Seal the bag and cut off one corner ofthe bottom of the bag. Squeeze the peanut butterthrough the hole in the corner of the bag—justlike squeezing frosting from a pastry bag!

�Cut the apples in half. Place one half, cut sidedown on a plate. Using peanut butter as glue,make a face using raisins and a small ‘smile’ of celery.

�Again, using peanut butter as glue, give the lady-bug snow-cap spots.

�PARENTS: With the tip of a knife, poke 2 smallholes in the apple above the ladybug’s eyes andinsert one carrot shred into each hole for antennae.

Remember: Adults should do all of thecutting. Let the kids have fun decorat-ing!This activity can be found atwww.VeryBestKids.com.

What You Need�Apples�Celery�Shredded carrots�Creamy peanut butter�Safety scissors�Kitchen knife�Raisins, Snow-caps�Sealable plastic sandwich bag

What do you call a camelwith three humps?

How did the skunkphone his mother?

What starts with ‘e’ and endswith ‘e’ and has one letter in it?

How many feet are in a yard?Who earns a living by

driving customers away?

Humphrey!

A taxi driver!On a SMELL-ular phone! It depends on how many

people are standing in it.

An envelope! (one letter...get it?)

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Draw a picture of each person in your family, including yourself.

Mad

Bored

Embarrassed

Scared Sad

Happy

Color the pictures usingthese colors to show how eachperson feels.

Show your drawing toyour family and talk tothem about the feeling colors you used.

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FEELINGSACTIVITY

Having a mom or a dad with

MS can be tough. Talking

about feelings can help

everyone feel a little better!

ISSUE #11

KeepS'mye

lin

FEELINGS

Contact the National MS Society at 1-800-344-4867.

ISSUE #10

KeepS'mye

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TREATING

MS

T H I N G STHAT MAKE ME HAPPY...

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ISSUE #11/FEELINGS

PARENTS' PULL OUT

Talking with your chil-dren about their feelingscan be a real challenge,particularly when yourown feelings are runningstrong. This issue ofKeep S’myelin is designedto give you and yourchildren ideas and oppor-tunities for recognizingand sharing feelingsabout MS.

As you read the featurestory, you might try peek-ing in your backpackstogether to compare thekinds of feelings you findinside. Are everyone’sfeelings prettymuch thesame—or arethey very dif-ferent? TheFeelings Activity gives allof you a great opportuni-ty to talk about how feel-ings look—and sound. How do we know whenothers are feeling happy,sad, scared or cranky?

How to Read This Issueof Keep S’myelin

with Your Kids

The Keep S’myelin Kidshelped Ben figure out away to work around hismom’s fatigue—he andhis mom could shoponline for a new back-pack.

Brainstorming togetherabout ways to outsmart MS can become a new kind of family game thatlifts everyone’s spirits.

Sharing the jokes is awonderful way to remindyourselves that laughter isgood medicine.

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PARENTS' PULL OUT

Everyone in the family islikely to have feelingsabout MS—the most com-mon being anxiety, anger,sadness and guilt. One ofthe biggest challenges forfamilies is that each per-son will experience thesereactions at different timesand in different ways. Youmay sometimes find it verydifficult to deal with yourchildren’s feelings aboutMS at the same time thatyou’re trying to deal withyour own. It will help allof you to keep in mindthat these feelings aboutMS are normal reactionsto the kinds of changesthat the disease brings topeople’s lives. Talkingabout these feelings canease the way for all ofyou.

ANXIETY is a commonresponse to uncertainty andunpredictability—the hall-marks of MS. While you

are worrying about howyou will feel from one dayto the next, your childrenare likely to be worriedthat you will die or not beable to take care of them.You can respond to theirfears by reassuring themthat MS is not a fatal dis-ease, that you will alwaystake care of them and thatthe family will worktogether to meet the chal-lenges MS may bring.

ANGER is a natural reac-tion to feeling out of con-trol—to not being able tohave our own way. MS cancertainly disrupt people’splans, create obstacles andchange the usual way ofdoing things. Children getangry when their parentcan’t do everything he orshe used to do, or whenthey have to take on moreresponsibilities than someof their friends. It helps toshare your own feelings of

loss and frustration andwork together to come upwith creative solutions tothe problems.

SADNESS is part of adjust-ing to change and loss. It’simportant for parents andchildren alike to grieve overany changes that MS bringsto their lives. Healthy griev-ing lays the groundwork forcoping, adaptation andshared problem-solving.

GUILT is a feeling oftenexperienced by parents withMS who are worried aboutdisappointing their lovedones—about not holding uptheir end of the bargain.Children tend to feel guiltyabout their angry feelings—at their parent with MS orperhaps at God for lettingthis happen. Guilt can alsoresult from their mistakenbelief that they have some-how caused the MS ormade it worse. Talkingtogether about guilt can goa long way toward relievingthis uncomfortable feelingand helping put the angerwhere it belongs—on theMS rather than on oneselfor each other.

People—adults and children—vary in how much andhow often they express feel-ings. It’s important to keep

RESPONDING TO YOURCHILDREN’S FEELINGS ABOUT MS

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PARENTS' PULL OUT

in mind that feelings can beexpressed in many differentways—through words,body-language, behavior,eating and sleeping habits,and so on. One child maybe quite out-spoken whileanother shows his or herfeelings in a more roundabout way. Your beststrategy for finding outabout your children’s feel-ings may be to talk aboutsome of your own. Thisgives you the opportunity toshare ideas for helpingyourselves and each otherwith the feelings that can bepart of life with MS.

Parents sometimes worrythat talking about their ownfeelings will place a burdenon their children. The factis that talking often relievesthe burden rather than cre-ating one. Children areacutely aware of their par-ents’ feelings. In fact, youngkids tend to describe MS as“a disease that makes peo-ple cranky.” Sharing feel-ings helps kids understandwhy a parent is behaving acertain way and relievestheir worries about beingthe cause of the parent’s dis-tress. And being able to talkabout some of their feelingsmay help parents feel lesscranky!

RESOURCESHere are some wonderful resources for you andyour child. Talking about what you hear and readcan help start discussions about the feelings you

and your child have about MS.

TIMMY’S JOURNEY TOUNDERSTANDING MS Timmy’s Journey is an animatedcartoon that shares a littleboy’s adventure learningabout MS. David Lander is thevoice of Captain Kip S’myelin,Timmy’s guide on his journey.The cartoon is an excellentresource to talk with childrenabout MS. Developed for chil-dren ages 5-12, but appropri-ate for all ages.

SSOMEONE YOUMEONE YOUKNOW HAS MS:KNOW HAS MS:A BOOK FORA BOOK FORFAMILIESFAMILIESFor children ages 5-12.This story aboutMichael and his familyexplains MS andexplores children’sfears and concerns.Adapted by MarthaKing from originalmaterial by CyrisseJaffee, Debra Frankel,Barbara LaRoche, andPatricia Dick.

WHEN A PARENT HASMS: A TEENAGER’SGUIDEFor older children andteenagers who have a parent with MS. Discussesreal issues brought up byreal teenagers. By DianeO’Connell with thePrograms staff of theNational MS Society.

To request your

FREE copies of

these materials

or to learn more

about the

family programs

available at your

chapter, please call

1-800-344-4867.

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Keep S'myelin is a quarterly publication for children with par-ents or other relatives with multiple sclerosis. It is producedby the National Multiple Sclerosis Society. The NationalMultiple Sclerosis Society is proud to be a source of informa-tion about multiple sclerosis. Our comments are based onprofessional advice, published experience and expert opinion,but do not represent therapeutic recommendations or pre-scriptions. For specific information and advice, consult aqualified physician.

The National Multiple Sclerosis Society does not endorseproducts, services, or manufacturers. Such names appear heresolely because they are considered valuable information. TheSociety assumes no liability whatsoever for the contents oruse of any product or service mentioned.

This issue is made possible through an unrestricted educationalgrant from Teva Neuroscience.

EditorsRosalind Kalb, PhD Kimberly Koch, MPA

Design/IllustrationsClaude Martinot Design

The National MS Societymobilizes people and

resources to drive researchfor a cure and to addressthe challenges of everyone

affected by MS.

© 2010 National MS SocietyAll rights reserved

Please give us feedback.Send your questions or ideas to:

National MS SocietyKEEP S’MYELIN900 South Broadway Suite 200Denver CO 80209keepsmyelin@nmss.org

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How Can You Subscribe to Keep S'myelin?

Call 1-800-344-4867 andask to be added to theKeep S’myelin mailing list. IT’S FREE! You can also emailus at keepsmyelin@nmss.org. Please be sure to includeyour name and mailing address.

If your child is submitting somethingto Keep S'myelin, besure to include yourNAME, ADDRESS and

PHONE NUMBER.

PARENTS' PULL OUT

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