AN ACTIVITY BOOK ABOUT MS FOR KIDS

MultipleSclerosis

Society ofCanada

®

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If you just found out that your momor dad or someone else you know hasmultiple sclerosis (MS), or even ifthey’ve had it for a while, you probablyhave lots of questions. You’re not alone!Lots of kids have questions about MS.Multiple sclerosis is hard to say andspell, and really hard to totally under-stand!

This activity book is for you. It will helpanswer some of your questions. It mayalso help you to talk with your familyand friends about the changes multiplesclerosis can bring.

When a family member has MS it is important toremember that each person in the family is special. Sometimes it may be hard for you toremember that you are special, too!

My name is

I am years old

I am special because

MY FAVORITE THINGS

Food

TV show

Game

What I like to do

Animal

Story

What makes you the same as your mom or dad?

What are some of your favorite things?

place yourfavorite picture

here

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MS is a sickness that affects thecentral nervous system (the brainand the spinal cord). The brain is likea computer that sends messagesto the body telling it what to do. Thespinal cord is like a thick cable ofwires attached to the computer.Messages travel from the brain,along the spinal cord, to the muscles and otherparts of the body.If the brain wants the fingers to wiggle,it sends a message along the spinal cord out to the arm and down to the fingers, and they wiggle.

When a person has MS, the coveringor coating (called myelin) that pro-tects the nerves in the brain andspinal cord gets damaged. Myelinworks like the rubbery coatingaround electrical or phone wires.When wires on a telephone lose theircoating, the sound gets crackly.

As messages travel from the brain, they some- times get stuck or slowed becausethe myelin isdamaged. Whenthis happens,muscles or other parts of the body can’t always do what the brain is telling them to do.

Brain Spinal Cord

Nerves

Myelin

Spinal Cord

MS Scar

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MULTIPLE means many.SCLEROSIS means scars.

Multiple sclerosis means many scars.

This is HOWI imagine

MS might look...

A. No, you can’t catch MS from yourmom, dad or anyone. MS is not like a

cold. You can give lots of hugs withoutworrying about catching it.

Q. Can I catch MS?

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Your mom or dad with MS may be having troubledoing everyday things…putting on socks, makinga sandwich, or walking the dog. Your parent’s bodymay feel “funny” or different. These are called“symptoms.” It’s hard for a person with MS toknow from one day to the next how he or she willfeel. That is why we say that MS is unpredictable.

BALANCE CLUMSY DIZZY MOODINESS NUMBNESSPINS AND NEEDLES SEEING TALKING TIRED

TREMBLING WALKING WEAKNESSSee if you can find the magic solution to this puzzle! What do we know about symptoms and people with MS?

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What are MS symptoms?EVERYPERSON WITH MS IS DIFFERENT

MS symptoms can be very mild, veryserious, or somewhere in-between.They can come and go. Sometimesthe symptoms disappear for a fewdays, weeks or months, and thencome back again. There are manydifferent symptoms.

SYMPTOMS OF MS

ANSWER:

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Imagine sitting in school.Suddenly theblackboardgoes fuzzy andyou can’t readanything. Orimagine it’syour turn tobat and sud-denly you don’t have the energyto take a swing or even walk offthe plate. That is how it mightfeel to get an MSexacerbation (egg-zas-sir-BAY-shun).

Exacerbation is a verybig word that means atime when new MSsymptoms appear or oldsymptoms become worse.Exacerbationsare also called relapsesor attacks.

No one knows what causes a person toget MS in the first place. And no one

knows what causes aperson with MS, whohas been feeling fine, tohave an exacerbation.

But we do know thatthere’s nothing a kidcan do that can causea parent to have an MSattack. Forgetting your

home work, skipping chores, or fighting withyour sister might annoy your parents, butit can’t cause an MS attack!

WHATISAN MS EXACERBATION?

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RADIOLOGIST

SOCIAL WORKERSPEECHTHERAPIST

PSYCHOLOGIST

NEUROLOGIST

NURSE

UROLOGIST

OCCUPATIONAL

THERAPISTPHYSICALTHERAPIST

THERAPIST

FIND THE SPECIALISTSS U R O L O G I S T F G P O

R H J C K L P P O I U Y S C

A Z X C E T M N R R T T Y C

D N E U R O L O G I S T C U

I X C P H Y N U R S E S H P

O E R H T Y P Y U B N M O A

L W O Y Z S E Y U O L M L T

O O A S E P E H I L P V O I

G C X I Z E C W E R T Y G O

I T Y C U E H L L P P O I N

S R W A R C H E R A P I S A

T E E L T H E R A P I S T L

S O C I A L W O R K E R E R

Let’s meet the people who take care of people with MS

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MS affects everyone’sfeelings in the family, notjust the person who hasMS. Sometimes MSmight make you feel mad,or you might feel sad orscared if your parent isn’tfeeling well. You will alsofeel glad because you loveyour mom or dad and getto do fun things together.

Sometimes the hardestthing about feelings issharing them with others,but talking about feelingscan be helpful. It can makeyou feel better and bringyou closer to people youcare about and let themknow what some of yourworries might be.

Find someone:n Who is easy to talk ton Whom you like and trustn Who listens to your feelings

Making a list of yourfeelings can help. You cando this in your head, on apiece of paper, or in apoem or drawing. Then youcan share your list withsomeone you trust—likeyour mom or dad. This willhelp you feel better.

I would say: "Let outyour feelings! Andexercise!”TR, New Jersey, USA

I would say they should

not worry. It will be OK.

Well, they can worry a

little bit, but not too

much! SA, Ghana

I would tell them to try toforget it’s there most of thetime. But don’t put it totallyout of your mind at all times,because your mom or dadstill needs your help!SM, Vancouver, Canada

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I would tell them that

I deal with the same

feelings.

TS, Toronto, Canada

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1. Draw a picture of each person in your family(including yourself). 2. Color the pictures

using these colors toshow how each personfeels.

3. Show your drawing tothe people in your familyand talk to them aboutthe feeling colors youused.

Having a mom or a dadwith MS can sometimesbe tough. Talking aboutfeelings can help every-one feel a little better!

Mad

Bored

Scared Sad

Happy

Embarrassed

What Happens When MSJoins the Family?

Living with MS brings changesto every member of a family.Some changes may be big,

others can be small. Here aresome of the changes that kids

sometimes see:

Your mom or dad mayfeel different from oneday to the next—forexample, having a lot ofenergy one day and feel-ing very tired the next.It’s a good idea to havea back-up plan for dayswhen your parent doesn’tfeel well.

Your mom and dad may also seem moreworried than usual. Thiscan happen when some-one in the family is diag-nosed with MS and noone is sure exactly whatto expect. If you startto get worried too, besure to let them know.Worries feel better whenyou talk about them.

When someone in afamily gets MS, every-one else may need tohelp. Sometimes momsand dads trade jobs andresponsibilities becausethe parent with MS can’tdo the things that heor she used to do. Kidsmay be asked to domore chores. While kidstell us that they don’talways like the extrachores, they also say thathelping their parent withMS makes them feel proud.

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Q: Is it the MS thatmakes my mom cranky?

A: Moms and dads with MS can sometimes be cranky. Theymay feel tired, sad or frustrated by things they cannot do,or just plain grumpy. The important thing to remember isthat everyone feels cranky sometimes, even moms and dadswho don’t have MS. Maybe you and your parents could talkabout the kinds of things that make each of you feel crankyand the things that make you each feel better.

S' M Y E L I N K I D S

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any people with MSuse different types of

tools or gadgets to helpthem move about, havefun, and do everydayactivities. Forexample, some-one you knowmay use a cane, a wheelchair orscooter, grab barsin the bathroom,or a computer thatworks by talkingto it!

erhaps your mom ordad has made changes

to your house to make it easier and safer to getaround, like building aramp or adding a grab barin the bathroom.

MP

LIFE WITH MSEasier

In fact, we all usetools to help us witheveryday activities: abackpack to helpcarry things, glasses tohelp see more clearly,a shopping cart at thesuper market to holdgroceries. Can youthink of any othertools we use?

Can you think of a tool that might make life easier for someone with MS?

TOOLS CAN MAKE

All kinds of things CAN make ourlives easier. Glasses CAN help ussee. A calculator CAN help us addnumbers more quickly. A list CANhelp us remember what we need to buy at the grocery store.

We all use tools everyday thatCAN really make a difference.

ANSWERS ......

CAN GG MMEEAA

7. A container fordrinking water, often carried by campers.

CAN

1.Candy 2.Canoe 3.Canary 5. Candle 4. Cancan 6. Cane 7. Canteen

6. A stick used as anaid in walking can helppeople keep their bal-ance when they walk.

CAN

ANSWERS

4. A fun danceinvolving highkicks.

CAN

2. A light, narrowboat with point-ed ends. You use paddles to moveit forward.

CAN

3. A small, yellowsongbird often keptin a cage.

CAN

5. A tall, narrow tubeobject made of waxwith a wick inside. Itcan be used to helpus see in the dark.

CAN

1. Sweet treatsmade with sugar that children especiallyenjoy at Halloween.

CAN

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Here’s a great idea for your box ofpictures! You will need a pair ofscissors and old photos that havedoubles or that you don’tkeep. Cut the pictures into severaldifferent shapes and sizes. The funstarts when you try to put thepieces back together! To make thepieces easier to handle, mount themon cardboard. You can also storethem in a box or zipper bag to playwith again.

PICTURE

PUZZLES!

ACTIVITYJokes/Riddles

What dog loves to takebubble baths?

If athletes get athlete’sfoot, what do astronautsget?

Doctor, Doctor I feel like a pack of cards.

How do you fix a brokenpizza?

What do you call cheese that is not yours?

Why did the footballcoach go to the bank?

Michelle’s mother has four children. The first is April, the second is May, and the third is June. What is the name of the fourth child?

Ashampoodle!

I'll deal with you later.

Withtomatopaste!

A.Michelle.

NA_CHO cheese.

Togethisquarterback!

Missile-toe.

AND

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Here is a great gift ideafor someone you love whohas MS. Make a “coupon”!Here are some ideas forcoupons you can give yourmom or dad.

Your mom or dad willlove this kind of pre-sent because it tellsthem you love them andwant to help!

or your box ofed a pair ofo os that haveu don’t want tor s into severald sizes. The funy to put ther To make then le, mount theman also storepper bag to play

COUPONS OF LOVETY

GOOD FORAN AFTERNOON OF

CUDDLING AND

READING TOGETHER

COUPONGOOD FORCLEANING OUTTHE GARAGE

COUPON

GOOD FOR BRINGINGOUT THE TRASHEVERY WEEK

COUPONGOOD FOR HUGSAND KISSES,ANYTIME

COUPON

GOOD FOR MAKING

BREAKFAST FOR

THE WHOLE FAMILY

COUPON

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This girl and her mom want to get into thelibrary, but there are too many stairs. What would you do?

It’s very hot out and this dad with MS has been out in theyard for a very long time. What would you do?

This girl just found out that her dadhas MS. What would you do?

Talk to your mom and dadabout what you would do.

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WHAT’S SILLY WITH THIS PICTURE ?

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?Grownups are always saying, “Be patient!” But it’s hard to be patient waiting for the cure

for MS. MS researchis moving fasterthan ever before.Every day scien-tists are get-ting closer to

the answerswe need to important questions:

What causes MS? Whatcan cure MS? What canprevent MS from happen-ing to someone else?

We don’t have a cure forMS yet, but scientists

from all over the worldare working together tofind the answers.

Computers help themtalk to one anotherabout their ideas andthe results from their experiments. They cangive each other help without having to be in

the same place! Just likethe teamwork it takes toscore a goal in soccer orbuild a skyscraper or senda man to the moon, ittakes teamwork to findthe answers to MS.

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What would a cure for MSlook like?Maybe it will be a vaccineto keep people from evergetting MS. This would belike the shot you get fromyour doctor so you won’tever get the measles ormumps. Or, maybe it will bea medicine that makes MS go away once a personhas it. Or, maybe it will be acure that helps the cells inthe immune system dowhat they are supposed todo. Scientists are exploringall these possibilities, andmore. And maybe, the curewill turn out to be some-thing that no one has eventhought about yet.

Where is the curefor MS ?

What do you think the cure for MS will be?

Q. Do people die from MS?

A. No, people almost neverdie from MS. Once in a greatwhile MS causes other prob-lems that can make a personvery sick or even die, but thisdoes not happen very often.

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Pronunciation:NAH-zdar ihmeh-noo-EE seh

Pronunciation: koh-NEE-cheewah Wah-TAHK-sheewah (your name)-DEHSS-ew

Pronunciation:goo dahg meet nahmn air

Pronunciation:ZzDRAST-vet-yah Men-YAH zoh-VOOT

Visit this website to learn more: http://www.ipl.org/youth/hello/

If you wanted to say hello to every-body in the world, how many peoplewould that be? And how many lan-guages would you have to learn?

You would have to say hello toalmost 6,000,000,000 people andlearn at least 2,796 languages!Here are some examples:

Q A

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1. Myelin2. Symptoms3. Unpredictable4. Central nervous system5. Spinal cord6. Computer7. Many scars Answers

n nylimen ispaln drocn otrpucmen nmay csrasn iplrenudtcaben tspmyosmn tcnelra rvnosue yssmte

Pick your answers from the scrambled words below:

n The covering around the nerves is called

n The physical problems caused by MS are called

n MS can change from one day to the next—that’s why

we say it’s

n MS affects the brain and spinal cord, which together

make up the

n Messages going from the brain to other parts of the body

travel along the

n The brain acts like a

n The words multiple sclerosis mean

C83E 2006 Disponible en français

The Multiple Sclerosis Society of Canada and the National Multiple SclerosisSociety are proud to be a source of information about multiple sclerosis. Our com-ments are based on professional advice, published experience and expert opinion,but do not represent therapeutic recommendations or prescriptions. For specificinformation, consult a qualified physician.Neither the Multiple Sclerosis Society of Canada nor the National MultipleSclerosis Society, endorse or recommend products, therapies, services or manu-facturers. The Society assumes no liability whatsoever for the contents or use ofany product or service mentioned.

The mission of the Multiple Sclerosis Society of Canada is to be a leader in findinga cure for multiple sclerosis and enabling people affected by MS to enhance theirquality of life.The mission of the National Multiple Sclerosis Society is to end the devastatingeffects of MS.

Funding for Keep S’myelin provided by:Lead Funder

Support also from J.P. Bickell Foundation

This activity book is based on the National Multiple Sclerosis Society’s award-win-ning publication, Keep S’myelin, a newsletter for children with a parent or loved onewith MS. For more information on the newsletter please call 1-800-FIGHTMS(1-800-344-4567). Interactive versions of the newsletter are available atwww.nationalmssociety.org and click on Keep S’myelin.

© 2006 National Multiple Sclerosis Society

EditorsKimberly Koch, MPACristina Toporas, BSc

Design/IllustrationsClaude Martinot DesignReviewed by

Rosalind Kalb, PhDCindy Shaffer, MeDDeanna Groetzinger, MAWilliam J. Mcllroy, MD, FRCPC