AN ACTIVITY BOOK FOR KIDS WITH MS

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Dear Parent,

This activity book is brought to you by Young Personswith MS: A Network for Families with a Child or Teenwith MS. The Network is a collaborative effort of theNational Multiple Sclerosis Society and the MultipleSclerosis Society of Canada. This activity book is atool to help you talk to your child about his or her diag-nosis of MS. We hope this will allow you to discuss dif-ferent issues with your child and use it to open up con-versation about sometimes difficult topics. This book isdesigned for children ages 5-12. Resources for olderchildren can be found at the National MS Society web-site (www.nationalmssociety.org) or the MS Societyof Canada website (www.mssociety.ca).

As you read, your child may see him or herself in thematerial or they may see something that is nothing liketheir disease. Please remember that MS affects every-one differently and we tried to include something forevery child with MS.

If you have questions or would like further informationon your child’s MS, please contact the Young Personswith MS Network at childhoodms@nmss.org or 1-866 KIDS W MS (1-866-543-7967).

In the United States you may contact your local chap-ter by dialing 1-800-FIGHT MS (1-800-344-4867).

For information in Canada, please contact the NationalInformation Resource Center of the MS Society at 1-866-922-6065 or email kidswithms@mssociety.ca

f you just found out that you havemultiple sclerosis (MS for short), oreven if you’ve had it for a while, youprobably have lots of questions. You’renot alone! All kids with MS have ques-tions. Here’s some infor-mation that willhelp answer someof your questions.Reading this withyour mom or dadmay help you totalk about thechanges MS canbring.

First, rememberthat it’s not yourfault that youhave MS. It’s notanyone else’sfault either.Second, you maynot know anyother children who have MS, but there are.

MS is a sickness that affects the cen-tral nervous system (the brain and thespinal cord.) The brain is like a computerthat sends messages to the bodytelling it what to do. The spinal cord islike a thick cable of wires attached tothe computer. Messages travel fromthe brain, along the spinal cord, to the

muscles and other parts of the body. Ifthe brain wants the fingers to wiggle, itsends a message along the spinal cordout to the arm and down to the fingers,and they wiggle. When a person has MS,

the covering or coating (called myelin) that protects the nerves in the brain and spinalcord getsdamaged. As messagestravel from thebrain, they sometimes getstuck or slowed because the myelin is dam-aged. When thishappens, muscles orother parts of the body can’t

always do what the brain is telling them to do.

The most important thing to remember isthat having MS doesn’t change some veryimportant things…you are the same lov-able you and your family will always loveyou and keep you safe. They want to knowwhen you are worried or scared, and theywant you to feel OK about learning aboutMS.

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LET’S LEARN ABOUT MS

BrainSpinal Cord

Myelin

Spinal Cord

MS Scar

Nerves

I

s

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You may be having trouble doingeveryday things…putting on yoursocks, making a sandwich, or walk-ing the dog. Your body may feel“funny” or different. These arecalled “symptoms.” It’s hard for aperson with MS to know from oneday to the next how he or she willfeel. That is why we say that MS isunpredictable.

MS symptoms can be very mild,very serious, or somewhere in-between. They can come and go.Sometimes the symptoms disap-pear for a few days, weeks ormonths, and then come back again.There are many different symp-toms. You won’t have them all.

❤ Weak arms and legs.Your arms and legs feelvery tired, as if therewere weights tied onthem.

❤ Losing your balance. You might loseyour balance, even ifyou haven’t done any-thing to make yourself dizzy. It may feela little like when you spin around in acircle. It’s hard to walk straight.

❤Having trouble concentrating orremembering. Sometimes MS makes ithard for you to remember things or payattention at school.

What are the problemsyou may have?

Here are some that manypeople with MS have:

S SY MP O MT

Ask your mom or dad aboutthe symptoms you’re having.Learning about MS symptomsand talking to your parentsabout them can make you feelbetter.

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❤ Poor eyesight, so things look blurryor like a big movie screen with blackholes in it. Sometimes you may seetwo of everything. Youmay have troublereading orwatching TV.

As we just read, you can have many differ-ent kinds of symptoms. Some are problemsyou can see, however, others are invisible.You know you have these symptoms, but noone else can see them.

❤ Tiredness, called MS fatigue. This isdifferent from the tiredness most peoplefeel. It can happen atany time of day, evenafter a long nap!When you feel thisway, it’s hard foryou to do verymuch—eventhings you enjoy a lot.

❤ Strange feelings that can hurt or itchor are just plain uncomfortable. You may get a prickly feeling (like pins andneedles) in your arms orlegs—just like you get whenyour hand or foot “fallsasleep”—but the feeling maynot go away. This can make ithard to walk or hold thingswithout dropping them.

You may have symptoms others can’t see

Some of these invisible symptoms are:

Invisible symptoms can be hard tounderstand. You may look just fine,but still not be able to play a gamewith your friends or run with yourdog. When you have a symptomothers can’t see, you will need tohelp them by telling them about it.

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Madison is 10 years old and lives inWildwood, Illinois. She’s in the 5thgrade and has 2 cats,named Scooby-Doo andRoach, and one dog,named Little Bit. She hashad MS for 3 years.

Mighty Special Kids:How did you knowyou had MS?Madison: All of a sudden I fell downand my right side felt numb. Then, I hadtrouble walking and kicking a ball. Thenwe knew something was wrong.

Mighty Special Kids:How does MS affect you now?Madison: I need a wheelchair and havetrouble talking clearly.

Mighty Special Kids:Do you have any special therapy?Madison: I go to “hippo therapy!” Thatmeans horseback riding. I go ridingevery other week and it’s a lot offun. Also, it helps me exercise andthat is good for my MS. Myhorse is “Chipper.” He’s verygentle and he’s silly some-times, especially when it’s timefor him to eat! It helps me getstronger and it helps with mybalance.

MEET SOME FRIENDS WITH MS

INTERVIEW WITH

Mighty Special Kids:Do you take any medi-

cine for your MS?Madison: I have totake a shot every day.It was hard at first, butmy mom and dad madea Treasure Box withlots of lit-tle pres-

ents.I take a present each timeI have a shot. That helps!Now, it’s not so bad.

Mighty Special Kids:What would you tellanother kid who just found out thatshe had MS?Madison: Well, you might have a hardtime running. You might have a hardtime with small things like Legos, but ifyou work on it, you can do it. You mighthave to rest more because you get verytired. We have movie nights where wejust watch movies so I can rest. You

might have to take shots (but theTreasure Box helps!); you might

need an MRI (it is cool tosee what your brainreally looks like!); you

might get to ride on ahorse!; and, you learn a lot

about yourself.

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Mighty Special Kids:What do you do that makes it easierto live with MS?Malcolm: I have a tutor after school tohelp me keep up with my schoolwork. Ihave a few friends who help me atschool.

Mighty Special Kids:What would you tell another kidwho just found out that he had MS?Malcolm: I’d say let your family carefor you.

INTERVIEW WITH

Malcolm is 9 years old and in the 4th

grade. He lives withhis family in Colorado.

He has a younger sister and a dog named Bodie. He keeps

very busy playing baseball in

little league and going to the pool

with his friends. Malcolm was diagnosedwith MS when he was 6 years old.

Mighty Special Kids:How did MS begin for you?Malcolm: I had “pins and needles” feel-ing in my hands that would not goaway. This made it hard for me to holdonto things, so my mom and dad tookme to the doctor.

Mighty Special Kids:How does MS affect you now?Malcolm: Well, most days I feelfine. My MS is mostly “invisible.”That means no one can really tellI have MS from looking at me. Istill get “pins and needles,” andhave trouble concentrating atschool. Sometimes I get verytired during school and need totake a nap in the nurse’s office.

The doctor can’t tell that you have MSby looking down your throat or listeningto your chest. There isn’t a simple testthat can show for sure if you have MS.

The doctor probably askedlots of questions: “Howdo you feel? What prob-lems are you having?Have you felt anything

like this before?” The doctor looked inyour eyes, watched you walk, and used asmall hammer to test your knees andankles. The doctor also may havechecked your arms and legs to see howstrong they were and if there was anystiffness in them.

The doctor may have taken a picture ofyour brain and spinal cord using an MRI(those letters stand for MagneticResonance Imaging). You may have beenpoked in the back with a needle (called aspinal tap) to find out if the liquidaround your spinal cord had any changes

in it. And, you may havehad a test called a VEP(Visual Evoked Potential),to tell if the messagesgoing from your eyes toyour brain were movingmore slowly than they

should.

The doctor uses these tests to decide ifthe problem is MS or something else.Once the doctor has decided that it’s

MORE ABOUT MSHow does the doctorknow you have MS?

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We don’t have a cure for MS yet, but wehave ways to treat it and help you feelbetter. There are medicines, that helpyour body fight MS. If you take thesemedicines you have to have a shot.Nobody likes to get a shot, but theseshots are the best treatment we havefor MS right now.

MS can make you feel very tired or stiffor weak. The doctor knows about differ-ent types of medicines that may makethese problems better.

There are also medicines when your MSis acting up. You mayhave attacks everyonce in a while. Youmay have troubleseeing or walking orremembering things.(When this happens,you may be given aspecial medicine witha big, long name—

methylprednisolone. This is a liquid med-icine that drips through a needle intoyour arm. You might go the hospital for afew days to get it.)

Is there a curefor MS?

There are lots of other thingsthat can help you to feel better:exercise, rest, healthy food, andhaving fun!

s:

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UROLOGIST:

A doctor who knows a lot about

the bladder and how it works.

Sometimes people with MS

have problems going to the

bathroom. This doctor can help.

NURSE:Someone who helps people learnabout takingmedicines andhow to be ashealthy asthey can be inspite of MS.

OCCUPATIONAL

THERAPIST: A person who

can help people with MS

learn how to do day-to-day

activities

more easily

and how to

have fun in a

less tiring

way.

SPEECH THERAPIST:A person who helpspeoplespeak orswallow better.

SOCIAL WORKER, PSYCHOLOGIST ORCOUNSELOR:A person who helps families talk about MS together.

RADIOLOGIST:A doctor whounderstands what anMRI shows.

Here are some of the peopleyou may go to who can try tohelp you feel better. You mightwant to have one of these jobs

when you grow up!

LET’S MEET THE PEOPLEWHO TAKE CARE OF CHILDREN

PHYSICAL THERAPIST:A person who can help someone learn how to walk better, learn exercises to become

stronger, or tofind out about special tools

that can help him or

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FIND THE SPECIALISTS

RADIOLOGIST

SOCIAL WORKER

SPEECH

PSYCHOLOGIST

NEUROLOGIST

NURSE

UROLOGIST

OCCUPATIONALPHYSICAL THERAPIST

S U R O L O G I S T F G P N

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

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

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

I X C P H Y S I C A L S H E

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

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

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

G C X O Z A C W E R T Y G U

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

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

T E E L R T Y U C X Z Z T A

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

Now that you have been told youhave MS, you probably go to thedoctor for checkups and when youare having a problem. Checkups givethe doctor a chance to find out howyou are doing, and they give you andyour mom or dad a chance to askquestions.

The doctor may need to examine you.She or he may test vision, walking,reflexes (that’swhat the ham-mer is for!),strength, and alot of otherthings that canbe changed byMS. Based onthis examina-tion, the doctormay want toadd or change a medication or do somemore tests—maybe a blood test oranother MRI.

A VISITTOTHEDOCTOR

“How are you doing?”

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“Have you had any new symptoms?”

“Are you having any problemswith your medications?”

“What can I do about feeling tired all the time?”

“Why are my legs so stiff?”

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You probably have lots of feelingsabout MS. MS probably makes you feelmad, especially if you can’t do some ofthe things you like to do. Sometimesyou might feel sad because someone atschool said something mean to you.You might feelscared if youhave to go tothe hospital.Sometimesyou might feelglad because,in spite ofMS, you cando fun things with your friends andfamily.

Sometimes the hardest thing aboutfeelings is sharing them. Talkingabout feelings can make you feel bet-ter and bring you closer to people youlove.

Having feelings you keep secretis like having a heavy backpack withlots of stuff inside. You can’t reallylightenit if youdon’tlook inthereyourself.And itcan gettoo

Make a list of the feelings you arecarrying in your feelings backpack. Youcan do it in your head, on a piece ofpaper, or in a poem or drawing. Youcan also try the “Feeling Buddy” activitythat fol-lows.

There are lots of people you can talkto—your mom and dad, brothers andsisters, teachers, doctors, school

counselors, grandparents, and friends.

Talking about your feelings is the bestway to learn more about yourself andfind help for your worries, so don’t beafraid to talk to someone the nexttime you want to sort out your feel-

Find someone:❥ Who is easy to talk to❥ Who you like and trust ❥ Who listens to your feelings

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Below thepicture,

write thename of

the feeling.

Use this outline todraw a face that

shows how you arefeeling today.

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FAMILY

1. Cut two 4-inch circles out of paper. (Youcan trace a large coffee mug for the shape.) 2. Put one circle over the end of the card-board tube. Fold the sides down, and tapearound the tube. (Make sure the paper issturdy and taped on well.) 3. Cut several cardboard strips. Fold eachstrip back and forth like a fan. Drop thestrips into the tube. The first one should fallto the bottom. Keep adding strips until theyreach the top of the tube. 4. Pour the rice and the dried peas, popcorn,or lentils into the tube. 5. Put the other paper circle over the openend of the tube. Tape in place. 6. Decorate your rain stick with markers,paints, paper shapes, ribbon, etc. 7. To hear the rain, slowly turn the cardboardtube so that first one end is up, and then theother.

✮ a cardboardtube from gift wrapor paper towels✮ paper, scissors, and tape✮ strips of cardboard (about 4”long and 1” wide) ✮ 2 tablespoons dried peas,unpopped popcorn, or lentils ✮ 1 cup uncooked rice✮ markers, paint, ribbon, andother decorations

MATERIALS

These rain sticksreally sound like

rain!

INSTRUCTIONS

MAKE A RAIN STICK

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❤ Line the cookie sheet with the waxpaper. Spread 12 graham crackers orwafers on the cookie sheet.❤ Add the milk to the peanut but-ter and blend until smooth.❤ Next add the pudding mix andbeat at a low speed for two minutes.❤ Let the mixture stand for five min-utes.❤ Spoon 1/2 inch of mixture ontoeach graham cracker/wafer. Spreadto the edges of the cracker.❤ Top each cracker with one cracker.❤ Freeze until firm; about 3 hours.Makes 12 sandwiches.

Have one player lie down on his back.The next player lies down with hishead resting on the firstplayer's belly and the nextplayer lies down with herhead on the secondplayer's belly. Arrangeall the players untileveryone is zigzaggedaround the lawn orfloor, each with his orher head on someone else'sbelly. If possible, make theline into a loop so that thelast player can put her headon the first player's belly.

Then, the first player shouts loud andclear, "Ha!" The second player respondswith a vigorous, "Ha, ha!" then the thirdplayer chimes in, "Ha, ha, ha!" Continueuntil all players have shouted out their"Ha's" or (more likely) have dissolved into

uncontrollable laughter, with heads bouncing on

the bellies of friends,brothersand sis-

ters, uncles,cousins or

grandmothers.

“ICE CREAM“ SANDWICHES

GIGGLE BELLY GAME

YOU WILL NEED:

Please note: if you are allergic to peanut butter,find an acceptablesubstitute.

❤ 1 1/2 cups cold milk❤ 1/2 cup peanut butter❤ 1 package instant chocolateor vanilla pudding❤ 24 graham crackers orchocolate wafers❤ One large mixing bowl❤ A cookie sheet❤ Wax paper❤ Hand mixer

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FA M I L Y

Everyone in the family is thinking about MS

When one person in a family has MS,everyone thinks about it, worriesabout it, and has lots of other feel-ings about it. When families talkabout their feelings to one another, ithelps everyone feel better.

Your parents love you and want you tobe safe and happy. And they want tohelp you deal with your MS the bestyou can. They may also be frustratedand sad sometimes because theywould like to be able to make MS goaway and they don’t always know howto make you feel better.

Brothers and sisters may have lots offeelings about MS, too. They may beangry or jealous or sad. They may feelforgotten about or ignored as theywatch you receive a lot of attentionand time from your parents and otheradults. They may wonder if anyone stillcares about them! Brothers and sis-ters also can be frustrated becauselife seems so different now. They mayfeel mad that you even have to havethis disease and may take out theiranger on you even though it is the MSthey are really mad at.

• FEAR – theyworry about you;they might worry thatthey caused your MSor that they will getMS too.

• SADNESS –they hate seeingwhat you have togo through andhate not knowinghow to help youfeel better.

• GUILT – theyfeel bad about theirbad feelings. Theythink they should besick instead of you.

Here are some other feelings that brothers and sisters might have:

In fact, everyonein your family

probably has feltthese things.That’s part ofliving with MS.

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1. The brain sends _____ to other partsof the body

3. Myelin protects the_____ in the brain and spinal cord

4. Is MS ‘catching’?5. Myelin is like a _____ around the nerve6. Some MS medicines are given in a _____7. Sclerosis means_____8. MS causes the myelin to be _____

10. This part of the body is like a computer12. What might prevent MS from getting worse?

1. The covering on the nerve2.The part of the body that islike a thick cable of wires6. This word means scar9. This word means “many”11. One of the symptoms of MS is _____ and needles

13. These are the initials for the National Multiple Sclerosis Society

ACROSS DOWN

* Sclerosis * Medicine* Damaged * Coat* No* Messages* Multiple * Pins* Shot* Myelin* Nerves* NMSS * Scars* Brain* Spinal cord

CHOOSE FROMTHESE ANSWERS:

CROSSWORDS

DID YOU KNOW…? Multiplemeans many. Sclerosis meansscars. So multiple sclerosismeans ‘many scars’. No one cansee these scars unless they takea special picture called an MRI.

1 2

3

5

8

7

9

10

12

11

13

6

4

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You may wonder just what totell your friends about MS. Theyare probably curious about what iscausing your problems. Remember,you decide how much you want totell your friends and classmates.Talk to your mom and dad abouthow to talk about it. You can evenbring this booklet to your school.

Tell your friends that they won’t get MS from beingwith you. You can tell them that it might make you missschool and that sometimesyou may not be able to dothings with them.

Tell them what symptoms youhave and how you deal with them.You’re still the same person youwere before the MS! Some friendswill be kind and helpful; others maytease you or say mean things. Talkto adults or other friends whensomeone isn’t nice. Sometimes it’sbetter to just stop being aroundpeople who tease you. Your goodfriends will understand that you arestill you and that you can still havelots of fun together.

Tellingfriends aboutMS

WHAT’S NEXT?

ACTIVITY

❤ Even though you haveMS, you are still thesame, lovable you!

❤ Be proud ofwho you are. Whoyou are is moreimportant thatwhat you can orcan’t do.

❤ Keep asking questions and learn all you can about MS.

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In the middlecolumn writewhat you thinkyou should tellthem

JANE:Tell herall aboutmy MS.

She’s a goodfriend, agood listen-er, and anice person.

ALEX:Don’t tellhim aboutmy MS.

He’s got abig mouthand likesto tease.

In the third columnwrite down why youthink you should tellor not tell them.

In the firstcolumn, make alist of friends,

Here are some examples:

Here are some tipsfor living with

multiple sclerosis:

The

“NEED TO KNOW”

Notebook

If you are not sure which friends

to tell and how much to tell

about your MS, try making a

page with three columns.

The National Multiple Sclerosis Society and the Multiple SclerosisSociety of Canada are proud to be a source of information about multi-ple sclerosis. Our comments are based on professional advice, publishedexperience and expert opinion, but do not represent therapeutic recom-mendations or prescriptions. For specific information, consult a qualifiedphysician.

Neither the National MS Society, nor the MS Society of Canadaapprove, endorse or recommend products, therapies, services or manu-facturers. The Societies assume no liability whatsoever for the contentsor use of any product or service mentioned.

The mission of the National Multiple Sclerosis Society is to end thedevastating effects of MS.

The mission of the Multiple Sclerosis Society of Canada is to be a leaderin finding a cure for multiple sclerosis and enabling people affected byMS to enhance their quality of life.

This activity book is made possible through an unrestricted educational grant from Teva Neuroscience.

A very special thank you to the National Capital Chapter of the NationalMS Society for the use of the name, Mighty Special Kids.

© 2004 National Multiple Sclerosis Society

EditorsDebra Frankel, MS, OTRSusan GassKimberly Koch, MPACristina Toporas, BSc

Design/IllustrationsClaude Martinot Design.

Reviewed by the Client EducationCommittee of the National MS Society.