A NEWSLETTER FOR KIDS ABOUT MULTIPLE SCLEROSIS

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ISSUE #9/HEALTHY FAMILIES

WHAT IS A

Write to us and let usknow about the healthyactivities your familydoes together!keepsmyelin@nmss.org

"Healthy" doesn't only mean that noone in your family is sick with a coldor measles or MS. A family can behealthy even if someone has MS oranother illness!

A healthy family is one that laughsand has fun together, eats nutritiousmeals together, talks to one anotherabout important things, gets regularmedical and dental check-ups, exercis-es and learns new things together. Inthis issue of Keep S’myelin we learnlots of ways families can be healthytogether, even when someone has MS.

Multiple sclerosis (MSfor short) is a diseasethat affects the centralnervous system (thebrain and spinal cord).The brain is like a com-puter that tells the bodywhat to do. The spinalcord is like 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)

MS that protects the nervesgets damaged. Scars formwhere the myelin is dam-aged. As messages travelfrom the brain, they some-times get stuck or sloweddown by these scars.When this happens, theother parts of the bodycan’t always do what thebrain is telling them to do.

Sometimes people withMS have trouble seeing.Sometimes their arms andlegs feel weak, or theirskin feels “tingly”(likep i n s a n d needles). Some-times they lose their bal-ance, or sometimes it’s

hard to walk. MS prob-lems like these are called“symptoms.” Symptomsof MS can come andgo…we don’t know exact-ly why. Sometimes youdon’t even notice thesymptoms. At other timesthey are pretty obvious.It’s hard for a person withMS to know from one dayto the next how he or shewill feel. That is why wesay that MS is unpre-dictable.

Interesting Fact: Multiple means many.Sclerosis means scars. So,multiple sclerosis means“many scars.”

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Q.Q.A.A Moms and dads with

MS can sometimes becranky. They may feel tired, sador frustrated by things they can-not do, or just plain grumpy. Theimportant thing to remember isthat everyone feels cranky some-times, even moms and dads whodon’t have MS. Maybe you andyour mom could talk about thekinds of things that make youeach feel cranky and the thingsthat make you each feel better.

Is it the MS thatmakes my momcranky?

Bailee, age 6

SINCE YOU’VE ASKED...

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STORY

Edmond is 11 years oldand in the fifth grade.He has two cats—Tigerand Zoe. He likes todraw, read, practice TaeKwon Do, and playstrategy games—espe-cially Warhammer.

My mom and I do lotsof exciting things togeth-er, even though she hasMS. We can’t do a lot ofphysical-type stuff, likeride bikes or go camp-ing, so we improvise.

For instance, we paintWarhammer figurinestogether. Warhammersare little plastic minia-tures that you build,paint, and do battle with.I do most of the building,Mom and I paint, andDad plays the game withme. It’s quiet and relax-ing when we paint. Weenjoy working side byside while we listen tomusic and talk. We oftenrent B–movies (there areso many) and laugh atthem because they areso bad. We joke aboutthem for days after-wards.

Speaking of movies, weoften set aside a time onSundays to go to a movie.

The theater is never verycrowded on a Sundaymorning and we like itthat way. Some of themovies we’ve seen latelyare: “Lord of the Rings”and “Kung Pow." Mom,Dad, and I also go to a lot of plays together. It’scool to see the actors upclose and we usuallyenjoy the show. We justsaw “The Caine MutinyCourt Martial Trial” andthen rented the movie.What a difference!Mom and I also havetalks before I go to bedaboutschool, my friends, TV,movies, and books.

Sometimes the talksdon’t last very longbecause Mom is so beat,but other times we talkfor hours. Although Momis tired and crabby some-times, I know she doesn’twant to be. It’s just thenature of MS. Although itcan be hard for our fami-ly to keep a positive out-look, we try our best,even when things aren’tgoing so well.

Edmond and his mom

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Ingredients:

1/3 cup frozen orange juice concentrate(thawed)1 cup milk1/2 tsp vanilla1/2 cup water1/3 cup sugar5-6 ice cubes

Instructions:1. Measure and pourorange juice concentrate,milk, vanilla, water, andsugar into a blender.2. Add ice cubes.3. Cover and blend onhigh for 1 minute untilsmooth and slushy.(297 calories, 58 g carbohy-drate, 5g protein, 5 g fat, 115 mg calcium)

Orange Cooler(2 servings)

Use a blender to make thiscool orange (healthy) treat!(Remember to ask an adultto help)

ANDJOKES

MakeA COOL

ORANGETREAT

RIDDLES

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CROSS

DOWN2. Stretches andsit-ups are examples3. It's round and funto toss4. Has a conversa-tion8. A large room whereyou can play andexercise

ACROSS1. To rest and settle down5. Broccoli and carrots are examples6. Being healthy and in-shape7. Pep and get-up-and-go9. Do laps in the pool

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WORDSCROSS

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My name is Victoria. I amseven years old and I live inVirginia. My mom has MS sowe can’t do as manythings as we used to. Onething I love to do with mymom is work in the garden.My dad and I do all theplanting and weeding ofthe vegetables. Mom and Ihave our own little flowerpatch. Mom helps planwhere to plant things.Mom and I pick cherries.Even my baby brother sitsoutside in his stroller. Thenmom and I have the hardjob of turning the cherriesinto jelly. It is a lot ofwork, but we have fun. Ilove spring and summerbecause we get to do somany things.

Victoria (center) with her cousins,harvesting tomatoes from the garden

VICTORIA'S STORYVictoria is a second-grader in Leesburg,Virginia. She is anoutstanding studentand likes swimming,dance lessons, andbeing a girl scout.

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ISSUE #9/ HEALTHY FAMILIES

PARENTS' PULL OUT

MS can be a very con-fusing disease for chil-dren (not to mentionadults). It seems to comeand go as it pleases, withsymptoms that vary fromday to day and person toperson; but we still don’tknow how to make it goaway for good. This isvery different from thepicture most kids have ofillness; when they getsick, they rest or takemedicine, and sooneverything is back tonormal. Families livingwith MS may wonderhow it is possible to livewith this disease and behealthy at the same time.In this issue, we talkabout ways that familiescan do just that.

While some wellnessstrategies are importantfor every family—such aseating healthy foods, exer-cising, and getting ade-quate rest and recreation,each family needs to find

the strategies that feel right for them. As you readthe articles and stories inthis issue, take the oppor-tunity to brainstorm withyour kids about ways toenhance the wellness ofeveryone in your family.

You might start by ask-ing them what kinds ofthings they already doeach day to make them-selves healthy andstrong. Then you canuse your imaginations tothink of new ways toenjoy being healthytogether—perhaps a visitto the town pool withthe Keep S’myelin Kids,a quiet time for talkingand sharing likeEdmond and his mom,or some time in the gar-den like Victoria and herfamily. Maybe each fam-ily member could take aturn coming up with anew idea for the week.MS may be part of yourfamily—but you can stillbe healthy and have fun.

How to Read this Issue of Keep S’myelin with Your Kids

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What do we mean byphysical health? This areaof health includes suchbehaviors as eating a bal-anced diet, finding exer-cise and health-promotingactivities that suit you andyour family, schedulingregular medical and dentalcheckups for everyone,and managing your MSsymptoms.

By emotional health, wemean having trusted peo-ple with whom to sharefeelings, talking togetheras a family, and ventinganger, anxiety, and frustra-tion in appropriate ways.

Intellectual health refersto doing intellectuallystimulating activitiestogether such as going to

movies, museums, thelibrary, or lectures, andbringing stimulating andinteresting discussions tothe dinner table.

Spiritual health has to dowith practicing behaviorsand attitudes that com-fortably reflect your per-sonal worldview and val-ues, perhaps includingaffiliation with a religiouscommunity.

Social health is an integralpart of wellness. Thisrefers to having healthysocial connections, such asfriends, extended family,community connections(such as PTA, civic groups, and political committees), and opportu-nities to have fun withother people!

Occupational healthmeans that each memberof the family has mean-ingful occupations includ-ing work, school, volun-teer work, or hobbies thata re satisfying and enjoyable.

What is aHealthyFamily?

You can’t necessarily change MS, but you and yourfamily can be healthy and well, nonetheless. Adults inthe family are healthy-behavior role models for theirchildren. Don’t let MS stand in the way of demonstrat-ing to your children that your family can achieve well-ness in spite of MS.

Many of us tend tothink of health largely interms of a lack of dis-ease. It may be difficultthen to believe that youand your family can behealthy when you areall coping with onefamily member’sMS. However, ifyou can accept abroader definitionof health, one thatgoes beyond phys-ical health and lack ofdisease, then you cantake steps to be thehealthiest family youcan be in spite of MS.

Health and wellnesscan be thought of as asatisfying balance of thephysical, emotional,intellectual, spiritual,social, and occupationalaspects of life. Viewedthis way, having achronic illness and beinghealthy are not mutuallyexclusive.

Traveling with a DisabilityBroaden Your Horizons! See the World!

Take Your Family on the Road!

Here are some excellentwebsites to visit forinformation about trav-eling with a disability.

SATH has been repre-senting the interests ofdisabled travelers for 25years. They have gath-ered a great deal of infor-mation about access inmany worldwide locations.

This is a very compre-hensive source of travelinformation. Tip sheets,referrals for travelers,and more.

SATH Society forAccessible Travel andHospitality347 5th Avenue Suite 610NY, NY 10016212-447-7284www.sath.org

This is a network of peo-ple with disabilitiesaround the world whohave joined together toform a group who shareinformation about travel.They offer a newsletterand members often lend ahand to travelers comingto their home town.

Note: There is a member-ship fee.

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Travelin’ Talk NetworkP.O. Box 1796Wheat Ridge, CO 80034303-232-2979www.travelintalk.net

Moss Rehab HospitalInformation Services1200 West Tabor RaodPhiladelphia, PA 19141215-456-5995www.mossresourcenet.org

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As of the printing ofthis newsletter, allphone numbers andweb addresses wereaccurate. These aresubject to change,however. If you dis-cover an inaccuracy,we encourage you tocheck with DirectoryAssistance or aninternet searchengine.

How Can YouSubscribe toKeep S'myelin?CALL 1-800-FIGHT-MSand select OPTION “1”.

You will be connected toyour local chapter. Askthem to add your nameto the Keep S'myelin distri-bution list. IT’S FREE!Keep S’myelin is publishedquarterly by the NationalMS Society. Past issues arealso available at your localchapter.

RESOURCES

“ Food For Thought:A Guide to Healthy Eating”

“ Living Well With MS: MS and Wellness”

“ Stretching for People with MS:Stretching with a Helper forPeople with MS”

NMSS PUBLICATIONSContact your local chapter forfree copies of these booklets

(1-800-FIGHT-MS, select option "1”)

WEBSITES

KEEP S'MYELINis now available online atwww.nationalmssociety.orgYou can e-mail us at:KeepSmyelin@nmss.org

Keep S'myelin is a quarterly publication for childrenwith parents or other relatives with multiple sclerosis. Itis produced by the National Multiple Sclerosis Societyand funded by a grant from our Gateway AreaChapter. The National Multiple Sclerosis Society isproud to be a source of information about multiplesclerosis. Our comments are based on professionaladvice, published experience and expert opinion, butdo not represent therapeutic recommendations or pre-scriptions. For specific information and advice, consulta qualified physician.

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 toend the devastating effects

of multiple sclerosis.