a newsletter for kids about multiple sclerosis · school holidays. artists, actors, storytellers,...

ISSUE #8/THE WORLD OF MS

A NEWSLETTER FOR KIDS ABOUT MULTIPLE SCLEROSIS

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®

An estimated2,500,000 people in theworld have MS.

MS is more common in

countries that are far

away from the equator.

There are over 38 MS

Societies all around the

world. Each MS Society

helps people with MS in

their country. There are

MS Societies in the

United States, Australia,

Brazil, Canada, Italy,

Ireland, France, Japan,

Qatar and Zimbabwe.

FACT:FACT:

FACT:

United StatesCanada

AustraliaZimbabwe

France

Qatar

EquatorBrazil

Italy

Japan

IrelandMS Around the World

Parents with MS and their kidsseem to have many of the sameconcerns and experiencesregardless of where they live inthe world. This issue of KeepS’myelin takes you on a triparound the world to learn moreabout MS. We talk to a child inItaly whose mom has MS andto a psychologist from the MSSociety in Australia who workswith families. We learn how tosay MS in different languages!And there’s a lot more. We hopeyou enjoy learning about MSaround the world!

NEW Kids KS #8 FINAL.qxp 4/8/09 6:35 AM

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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 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

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:National MS Society

KEEP S’MYELINBROADWAY STATION900 South Broadway

Suite 200 Denver CO 80209

or e-mail [email protected]


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Sara is 11 years old andlives in Genoa, Italy. Shelikes reading, fencing, andcooking. Her favorite subjects at school areFrench, English, music, andart. She has three birds

named Arancia, (which is theItalian word for“orange”),Limone (which means“lemon”),

and Brioche (which is atype of roll). Sara wantsto be a chef when shegrows up. (Thanks to MicheleUccelli from the MS Society inItaly for conducting thisinterview and translatingSara’s answers.)

Keep S’myelin: How did youlearn that your mom hadMS?Sara: My mom and dad toldme. My dad showed me mymom’s MRI* with the whitespots and explained thatthe spots on Mom’s brainmade it hard for her to docertain things.(*An MRI is like a special x-ray. It helps a doctor knowif someone has MS.)

Keep S’myelin: Do youremember how you feltwhen you found out?Sara: I was only six at thetime and I didn’t reallyunderstand what it meant.

Then when I was old enoughto understand, it didn’tmatter anymore because Iwas already used to it!

Keep S’myelin: How do youlearn about MS now if youhave a question?Sara: I ask my mom or I askthe physiotherapist fromthe MS Society when shecomes to our house.

Keep S’myelin: How hasMS affected your family?Sara: MS has caused someworry for our family. Mygrandma and aunts anduncles worry about how I’mdoing. I think I’ve grown upfaster.

Keep S’myelin: Have youmade any changes to yourhome because of MS?Sara: We put grab bars in the bathroom for my mom. We also lowered the buzzerthat opens the door down

stairs in our apartmentbuilding, so mom can openthe door when she’s sittingon the couch. Also, werearranged the bedroom soher side of the bed is closerto the bathroom. Mom hasa wheelchair to use outsideand a walker to use inside.We have a special parkingspace outside our building.

Keep S’myelin: How do youhelp your mom?Sara: I wash the dishes,help her get to the bathroom,and I bring her things likeher slippers. I also push the wheelchair along behindher when she walks in thehouse.

Keep S’myelin: Any message to children in theUnited States who have aparent with MS?Sara: Accept your mom ordad no matter what and behappy because MS is notsuch a big problem. Yourmom or dad isn’t anextraterrestrial from outerspace, but just your momor dad, same as before!

Keep S’myelin: How do yousay “multiple sclerosis” inItalian?Sara: Sclerosi multipla.

Genoa

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INTERVIEW WITH SARAFOR KEEP S'MYELIN

INTERVIEW WITH SARA

Sara and her mom on vacation inVienna, Austria


Make a Papier-Mâché GlobeMake a globe out of papier-mâché using strips of old

newspaper and paste made from flour and water.

Supplies:

Large balloonFlourWaterNewspaperPoster or tempera paint

¥ Make the paste by mixing 1 part flour with 2 parts water. ¥ Tear newspaper strips about 1 inchwide and 3 inches long.

¥ Blow up a balloon and tie it. ¥ Dip the strips of newspaper in thepaste and wrap the balloon as smoothlyas possible with one layer of papier-mâché strips. ¥ Then wrap again with three more layers. Next, use the papier-mâché tomake mountains and valleys. ¥ Let the balloon dry for at least 24hours. Using poster or tempera paints,paint the continents and the oceans!

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Clue: All country names are horizontal or vertical (no diagonals!)

UNITED STATES

ITALY

THAILAND

DENMARK

CANADA

ENGLAND

FRANCE

BRAZIL

PERU

SPAIN

MEXICO

ISRAEL

IRELAND

WORD SEARCH

COUNTRIES AROUND THE WORLD

How do you fix a broken pizza?

Why did the cookie go to the hospital?

What kind of fruit do you feed

a scarecrow? Strawberries.

Because he wasfeeling crumby.

With tomato paste!JOKES

ULADYAOIMEI

NW

IT

T ENLOLFRXCPA

DENMARKCOAN

SNFPFLPAZID

TGRTRAENONO

ALAOBBRAZIL

TANMAEUDPTD

ENCUDISANSB

SDEXTOUSMBD

HAILANDISL

ALYPPDXAE

EYISRAELR


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Australia is about one-third thesize of the United States and hasa much smaller population. Thereare about 20,000 people with MSin Australia (compared to about400,000 in America). Like theMS Society in the United States,the MS Society in Australiaoffers children’s programs for kidswho have a parent with MS.

Most of the children’sprograms happen duringschool holidays. Artists,actors, storytellers, andgame leaders join the MSSociety staff and helplead the programs. Theyhelp the kids mix andmingle and have a goodtime. Kids talk to eachother about what it islike to have a parent withMS. There is a chance tohave questions answered.Kids can ask frighteningquestions about MS thatthey may be afraid to asktheir parents. These are the samequestions that worry kids all overthe world: “Will my mum or mydad die from MS?” “Will I get MS?”“Did I cause my parent’s MS?”

Another program for kids and their families is Family Camp. Atthe campsite, grown-ups andkids play lots of “getting to knowyou” games so that everyone canlink up with someone “in thesame boat.” There are plenty ofactivities for everybody: canoeing,sailing, horseback riding, teamgames, discussions, hikes, andquiet games.

Many lasting friendships havestarted at Family Camp. Often,kids keep in touch with their newfriends by phone or e-mail.Sometimes, there are campreunions. Family Camp helps kidsand their families learn a lotabout MS and feel less alone.

Thanks to Lindsay Vowels, PhD with the MS Society of Victoria,

Australia.

LEARN ABOUT MS?

Having fun on the ropesat MS Family Camp

in Australia

HOW DO KIDS IN AUSTRALIA


ISSUE #8

KeepS'myelin

THE WORLD

OF MS

French? la sclérose en plaques (SEP)

German?multiple sklerose (MS)

Italian?la sclerosi multipla (SM)

Portuguese?ter esclerose múltipla (EM)

Danish?dissemineret sklerose (DS)

German?zentrales Nervensystem

Italian?il sistema nervoso centrale

Portuguese?sistema nervoso central

Danish?centralnervesystmet

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

MS in... CENTRAL NERVOUS SYSTEM in...

French?le système nerveux central

How do you say


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ISSUE #8/THE WORLD OF MS

PARENTS' PULL OUT

®

In this issue of KeepS’myelin, your childrenwill learn about the larger world of MS.Since families can some-times feel very alone intheir efforts to cope withthe impact of MS, it maycome as a surprise tolearn that parents andchildren around theworld are sharing thisexperience—and that MS Societies like oursare working to supporttheir efforts. Talkingabout how families inother countries manageMS, and visiting the web site of the MultipleSclerosis InternationalFederation, will help youall to feel part of a large,proactive team.

If you have a globe oratlas in your home, besure to look at all theplaces mentioned in thisissue. If you don’t haveeither of these, you canmark the places on yourpapier-mâché globe!While painting in thecontinents and oceans,you and your kids canpractice saying,“lasclérose en plaques,” orletting,“il sistema ner-voso centrale,” roll offyour tongues.

As you and your childrenread about families inother countries, ask themhow they think theseother kids might be feeling,what questions theymight have, what theirlives might be like. Thiswill give all of you theopportunity to talk aboutthe shared experiences offamilies everywhere, aswell as some of theimportant differences.

If your family is planninga vacation, take theopportunity to get yourchildren involved in theplanning. Visit the travelweb sites or call and askfor brochures aboutaccessible travel opportunities. Engageyour kids in thinkingabout ways to make thetrip easy, fun, and accessiblefor every member of the family.

HOW TO READ THIS ISSUE OF KEEP S’MYELIN

WITH YOUR KIDS

NEW parents KS #8 FINAL.qxp 4/6/09 9:46 AM Page 1

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PARENTS' PULL OUT

Travel Resources

Barrier-Free Travel: ANuts And Bolts Guide For Wheelers And SlowWalkers by CandyHarrington

This book is a well-researched resource thatcontains detailed information about thelogistics of planning accessible travelby plane, train,bus and ship. It containsresources, traveltips and updatedinformation about accessible travel options.Available through DemosMedical Publishingwww.demosmedpub.com

Access-Able Travel SourceTel: 303-232-2979www.access-able.com

Access-Able Travel Sourceis dedicated to aiding travelers with disabilitiesand the mature traveler.The website contains information not only onaccessible accommodations,but everything to make atrip fun and exciting.

Society for Accessible Traveland Hospitality (SATH) 212-447-7284 www.sath.org

SATH has been representingthe interests of disabled travelers for 25 years. Theyhave gathered a great deal ofinformation about access inmany worldwide locations.

Here are some excellent resources for information about travelling with a disability. Take Your Family

on the Road!Broaden Your Horizons! See the World!

Emerging Horizons:Accessible Travel Newswww.emerginghorizons.com

Emerging Horizons isa consumer oriented magazine aboutaccessible travel.Emerging Horizons’ primary focus is travel forpeople withmobility disabilities.

Handicapped Travel Club, Inc.www.handicappedtravelclub.com

The Handicapped Travel Club, Inc. (HTC) wasformed in 1973 to encourage traveling for peoplewith a wide range of disabilities.The HTC encour-ages people with disabilities and their families totravel, to meet and to share information on makingrecreational vehicles accessible for the disabled. Note: There is a membership fee.

As of the printing of thisnewsletter, all web addressesand phone numbers wereaccurate. If you discover aninaccuracy, we encourageyou to perform an internetsearch.


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worldwide research effort,translations of informationabout MS in 20 languages,contact information formember MS societies, information on all aspectsof MS, personal profiles and more.

• TALKING WITH YOURCHILDREN ABOUT MSHow to Talk about MS withYour Children is a bookletthat offers practical advice to parents to helpthem communicate more

• MULTIPLE SCLEROSISINTERNATIONAL FEDERATIONMission: Making worldwideconnections to end multiplesclerosis and its effects.

Tel: 020 7734 9120www.msif.org

The Federation seeks to workin worldwide partnership withmember MS societies andthe international research community to eliminate multiple sclerosis and its consequences, and to speakout globally on behalf of thoseaffected by multiple sclerosis.

Go to the MSIF’s website for information on the

Requests for these

publications can be

made by calling the

National MS Society

at 1-800-344-4867.

Requests for thesebooklets can be madeby calling the MSSociety of Canada at1-800-268-7582 orby e-mail at:[email protected].

• PLAINTALK: A Bookletabout MS for Familiesdiscusses some of themore difficult physical andemotional problems manyfamilies face. By SarahMinden, MD, and DebraFrankel, MS, OTR.

PARENTS' PULL OUT

RREESSOOUURRCCEESS FFOORR PPAARREENNTTSS

• SOMEONE YOU KNOW HAS MS:A Book for Families, for childrenages 5-12. A story about Michael and his fami-ly explains MS and explores chil-dren’s fears and concerns. Adaptedby Martha King from original mater-ial by Cyrisse Jaffee, Debra Frankel, Barbara LaRoche, and Patricia Dick.

effectively with their children about MS.

• MYELIN IS GETTING ONMY NERVES is an illustrated activity bookdesigned for children aged6-12 and their families.


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PARENTS' PULL OUT

Keep S'myelin is a quarterly publication for children with parents or other relatives with multiple sclerosis. It is produced by the National Multiple Sclerosis Society. TheNational Multiple Sclerosis Society is proud to be a sourceof information about multiple sclerosis. Our comments arebased on professional advice, published experience and expert opinion, but do not represent therapeutic recommendationsor prescriptions. For specific information and advice, consulta qualified 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 mission of theNational Multiple

Sclerosis Society is toend the devastating effects

of multiple sclerosis.

© 2009

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

National MS SocietyKEEP S’MYELIN900 South Broadway Suite 200Denver CO [email protected]

®

.

If your child is submitting something

to Keep S'myelin, besure to include yourNAME, ADDRESS, and

PHONE NUMBER.

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 [email protected]. Please be sure to includeyour name and mailing address.


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