ISSUE #3 ABOUT MS AND SYMPTOMS

A NEWSLETTER FOR KIDS ABOUT MULTIPLE SCLEROSIS

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People with MS may notice that theyare having trouble doing everydaythings... putting on their socks, makinga sandwich, or walking the dog. Theirbodies may feel "funny" or different.These troubles and discomforts arecalled "symptoms." MS symptoms canbe ve ry mild, ve ry serious, or somewhere inbetween. They can come and go.Sometimes the symptoms disappearfor a few days, weeks or months, andthen come back again. This is why wesay MS is unpredictable.

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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 wireattached to the comput-er. Messages travel fromthe brain, along thespinal cord, to the otherparts of 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 p i n s and needles.)S o m etimes 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’teven notice the symp-toms. At other timesthey are pretty obvious.It’s hard for a personwith MS to know fromone day to the next howhe or she will feel. Thatis why we say that MS isunpredictable.

MS

Brain Spinal Cord

Optic Nerve

Nerves

Spinal Cord

Myelin

MS Scar

We love to publish yourpictures, stories, andpoems about MS. Pleasesend us your work! Tell ushow your family learnsabout MS together, howyou feel about having MSin your family, whatadvice you would giveother kids about havinga mom or dad with MS,how you help your momor dad, or whom you talkwith about MS.

Keep S’myelin Readers:

WE WANT YOU!

Send to:KEEP S’MYELIN,

National MS Society700 Broadway,

Suite 810, Denver, CO 80203

or e-mail tokeepsmyelin@nmss.org.

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MEDICINES AND MS

Dear Sam:Your Dad may havehad a flare-up ofhis MS that madehis symptoms worse.He may have neededspecial medicines totreat the symptoms.It is easier for thedoctors and nursesto take care of himin the hospital thanat home. I hope yougot the chance tovisit while he wasthere.

Dear Jana:Sometimes peoplewith MS lose theirbalance and falldown. Your momdidn't fall on purpose and sheprobably felt a lit-tle embarrassed andscared herself! Talkwith your Mom. Tellher how you feel.She may be able totell you more aboutwhat happened andhow she's feeling.

When you have a cold orfever or cough, your mom ordad may give you medicineto make you get better.Unfortunately, we don't yethave medicines to make MSgo away.

But there are medicinesthat can help! Some medicines make MS symp-toms feel better. Other medicines help to slow downthe MS so that it will causefewer troubles. With some ofthese special MS medicines,your mom or dad may haveto take shots with a needle.Many people learn to givethemselves shots; othershave someone in the familyhelp. Your mom or dad mayfeel comfortable with you inthe room or he or she mayprefer privacy.

Sometimes people feel a little sick for a day or twoafter the shot, but it's usually not too bad, and themedicine is helping to control MS.

Since You’ve Asked

My dad's symptoms gotworse and he hadto go to the hospi-tal. Why did hehave to go?

Sam

My mom fell downwhen she was walkingthe dog. It wasembarrassing andscary.

Jana

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Some people with MS find thattheir arms and legs feel verytired, as if there were weightstied to them. It makes it hard tomove.

HAVING WEAKARMS AND LEGS.

FEELINGPINS AND NEEDLES

Remember the last time you sat onyour leg the wrong way and your footfell asleep and felt tingly and funny?

Sometimes MS gives people that pinsand needles feeling in their arms, legs,or other parts of their body.

COMMON

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Did you ever try to lookthrough someone else's glasses? Some people withMS have blurry vision or seetwo of everything (doublevision.)

HAVINGTROUBLE SEEING

LOSING YOUR BALANCE

Have you ever stayed up really late, waypast your bedtime? Remember how tiredyou were? Many people with MS feeltired like that all the time, even if they

get enough rest.

FEELING VERY TIRED

Have you ever made yourself dizzy byspinning around in a circle? It was hardto walk straight afterwards and keepyour balance, wasn't it? Sometimes people with MS lose theirbalance, even though theydon't feel dizzy.

There are many differentMS symptoms. Ask yourmom or dad about thekinds of symptoms he orshe is having. Not everyonewith MS has the sameones. Learning about MSsymptoms and talking toyour parents about themcan make you feel better.

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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?

EHHTPWKHTDTY

VMHRISASANIS

ESWENSBLLQRM

RIVMSEAMKIEU

YSOBANLKIIDL

PDGLNIATNLNC

EIYIDDNMGZLG

RFDNNOCDOADM

SFIGEOEAMKYV

OECUEMKBCCOI

NRAEDTSEEING

WESELYDIZZYW

INSSENKAEWRZ

TTLMSSENBMUN

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READER-SUBMITTED STORY

ARIANA’S STORY

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PARENTS' PULL OUT

ISSUE #3 ABOUT MS AND SYMPTOMS

As you read this issue with your child, youmight take the opportunity to talk aboutyour own symptoms and the ways they arethe same or different from the onesdescribed in the article. Be sure to men-tion that no two people with MS haveexactly the same symptoms, and no oneperson has the same symptoms all thetime. This can be difficult to explain toyoung children who tend to see things in afairly concrete way. They find it hard tounderstand why their mom or dad feels OKsometimes and not others, particularly ifthe symptoms are invisible.

The symptoms activity is designed to helpyour kids get a better sense of what someof your symptoms might feel like. "Tryingon" symptoms may be a little frighteningfor some children; others may think it's avery funny game. You know your child best.

Sometimes, your feelings about the symp-toms you are having may be a bit out ofsynch with the feelings your kids areexpressing about them. If, for example, you

are feeling sad or scared about the numb-ness in your hand or the weakness in yourleg, and your child begins to giggle and jokewhile doing some of the activities, you maystart to feel hurt or angry. Try to remem-ber that the point of the activities is tohelp children understand the symptomsand feel comfortable talking about them.You can talk about serious feelings, evenwhile sharing some giggles.

As with other important MS topics, youwill probably need to have more than oneconversation about your symptoms. Notonly will your symptoms ebb and flow overtime, but your child's need for informationwill also change as he or she gets older.Simple explanations are usually sufficientfor young children. Once you have openedthe door to discussion by talking and shar-ing, your kids will feel freer to ask morequestions as the need arises. Keep in mind,that each child may have a unique learningstyle. One might want to ask a lot of ques-tions, another might want to draw a pictureor act out a little skit.

How to Enjoy Keep S’myelin with Your Kids

Continued on page 2

PARENTS' PULL OUT

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You may find that con-versations about MS—orany difficult topic, forthat matter— are easierwhen you and your childare engaged in some otheractivity like riding in thecar, playing a game, ortaking a walk. This diffus-es some of the tensionand allows everyone tofeel more relaxed. As youtalk about symptoms, youcan expand your conversa-tion to include other chil-dren or adults with dis-abilities whom your childmight have met or seen.This is a good opportunityfor your child to try andguess what these otherpeople's feelings and experiences might be.

Have your child put on ankleweights and walk around thehouse or up the stairs. (If youdon’t have ankle weights, a longtube sock filled with sand andtied around the ankle is aneasy substitute.)

WHAT DOES IT FEEL LIKETO HAVE TROUBLE MOVING YOUR LEGS?.

Children often have difficulty understandingMS symptoms—particularly ones that are noteasy to see, like sensory changes, weakness,and fatigue. You can use the following activi-ties to initiate conversations with your childabout the symptoms you are experiencing.Having a better understanding of your symp-toms may help put to rest your child's fearsand confusion.

Explain to your child that these activities willgive a sense of what your symptoms feel like.It will be a similar feeling, but not exactly thesame. After each activity, ask your child to tellyou what it felt like to "try on" the symptom(frustrating, funny, clumsy, scary…)

Some children may giggle and find the activi-ties fun. Other children may feel uncomfort-able, frightened or sad… Be alert to yourchild's reaction, so you can tailor yourresponse.

Continued from page 1

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PARENTS' PULL OUT

WHAT IS IT LIKE TODO THINGS WHENYOUR ARMS FEELWEAK OR HEAVY?

Have your child put onwrist weights and trysetting the table, doinghomework, typing onthe computer, or givingyou a hug.

Have your child put on a pair ofwork gloves (like gardeninggloves) or a thin pair of wintergloves. Have your child removethe wrapper from a granola baror pick up kernels of popcornfrom a table with the gloves on.

WHAT DOES THE WORLD LOOK LIKEWHEN YOU HAVE BLURRED VISION?

WHAT IS IT LIKE TODO THINGS WITHONLY ONE HAND?

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

HOW DOES IT FEEL TODO THINGS WHEN YOURFINGERS ARE NUMB?

Take a pair of old glassesand smear petroleum jellyover the lenses*. Have yourchild wear the glasses andthen try to read a book ormake a peanut butter andjelly sandwich. *Please note: this will ruin

the glasses, so use an oldpair that are no longerworn.

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PARENTS' PULL OUT

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 or useof any product or service mentioned.

This issue is made possible through the support of the follow-ing Program Honor Roll chapters: Central New England,Central Pennsylvania, Gateway Area, Greater Connecticut,Greater Delaware Valley, Greater Washington, Indiana State,and Mid-Atlantic.

EditorsRosalind Kalb, PhD Kimberly Koch, MPA

Design/IllustrationsClaude Martinot Design

The mission of theNational Multiple

Sclerosis Society is toend the devastating effects

of multiple sclerosis.

© 2007®

Please give us feedback.Send your questions or ideas to:KEEP S’MYELINNational MS Society700 Broadway Suite 810Denver CO 80203keepsmyelin@nmss.org

When I have this symptom... I feel...

SYMPTOMS LOGYou can use this log to explain your symptoms to your children.

Contact your National MS Society chapter at 1-800-344-4867.

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