ISSUE #7/ABOUT YOU A NEWSLETTER FOR KIDS ABOUT MULTIPLE SCLEROSIS 1 Writing about MS in your family, or drawing pictures that tell a story about MS in your family, are great ways to share your ideas and feelings. You don’t have to be an artist, poet or author to draw, write and tell sto- ries. Share your work with your parents or other grown- ups, such as your teacher, an aunt or uncle… They want to learn how you feel about MS. Sharing your work gives you a chance to talk over things that might be confusing, or that might be funny, sad or frustrating. Sharing may make you feel better too! ® Most of the articles, drawings, and stories in this issue of Keep S’myelin were written by you. Thanks for sending us your wonderful work. If you would like to write a story or poem for Keep S’myelin, please send it to: Keep S’myelin, National MS Society Broadway Station 900 South Broadway Suite 200 Denver CO 80209 We look forward to your stories, poems, and drawings.
Transcript
ISSUE #7/ABOUT YOU
A NEWSLETTER FOR KIDS ABOUT MULTIPLE SCLEROSIS
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Writing about MS inyour family, or drawingpictures that tell a storyabout MS in your family,are great ways to shareyour ideas and feelings.
You don’t have to be anartist, poet or author todraw, write and tell sto-ries. Share your work with yourparents or other grown-ups, such as your teacher,an aunt or uncle… Theywant to learn how youfeel about MS. Sharingyour work gives you achance to talk over things
that might be confusing,or that might be funny, sador frustrating. Sharing maymake you feel better too!
®
Most of the articles,drawings, and stories inthis issue of KeepS’myelin were written byyou. Thanks for sendingus your wonderfulwork. If you would liketo write a story orpoem for Keep S’myelin,please send it to:
Keep S’myelin, National MS Society
Broadway Station
900 South Broadway
Suite 200 Denver CO 80209
We look forward
to your stories,
poems, anddrawings.
2222
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 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’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.
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.
Having MS in our family hastaught us things that noth-ing else could ever teach us.I am lucky to be a part ofsuch a meaningful team—myDad’s team.
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Has Already Helped Me Succeed
en years ago, my father was diagnosed
with multiple sclerosis. Backthen when I was only fouror five, it wasn’t too bad.But now, as the days andyears go by, my father’slegs are hardly able to bal-ance him anymore, his eye-sight is not great, his writ-ing is sloppy, and at timeshe even gets tired of thinking!
ach of my family mem-bers plays a different
role in helping to make ourfamily life better. I havetaken the responsibility ofentertaining my father!
inally, my father’s role on our team is team leader.
He is the strongest memberof the team. He’s alwaysthere when you need him. Hetaught us how to have apositive attitude and appre-ciate the good life.
I play soccer and my fatherloves the sport as much as Ido! My mother takes the roleof being my father’s legs.Whenever my father needssomething, she does thewalking. My sister, Laura,plays the role of thinker. Myfather always had a lot ofideas and thoughts. WhenLaura comes home from col-lege, she does some of thethinking jobs that are hard-er for him now. My brother,Patrick plays the laborer. Hehas the physical strength todo all the jobs that requirethe hard work.
How
Teamwork is somethingthat all children andteens need to experience.I have had chances totry teamwork in schooland in sports and it hasgiven me a boost in life.But the one team thatmeans the most to me ismy family. In my eyes, wework together betterthan any other family.
BYNATALIE
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My mom is my hero,
My mom is my best friend
My hate for her is zero
My love has no end.
My mom has MS,For it, there is no cure.
Sometimes she doesn’t seem so sure
To do the things she did before.
She has to use a cane,
Maybe a walker too,
but she always perseveres
Until the hard times are through.
My mom may not be able to ski,
Or go on trips to the mountains with me.
But she shops, she listens, and plays,
Draws, sews and puts away,
Sings, fixes, cooks and bakes,
Plans trips to lakes,
Helps, finds, laughs and smiles,
I could go on for miles and miles.
My mom has MS.It comes with pain.
Sometimes her steps falter,
But she always gets up again.
I love my mom.
by Emily (age 12)
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I talk to my mombecause she has MSand she can tell memore about MS andhow she feels.
Giana (age 8)
My Mom.I really do my mom! She got MS
when I was about 5. I thought she
was going to die at first, but then she
said she wasn’t. She has pains in her
neck every once and awhile, and has
to go somewhere else. When we go
to the mall, or on a walk, she uses a
cane or walker. Sometimes it’s hard
because she can’t go skiing and stuff,
but I still her.
Who do you talk with about MS? Why did you choose that person?
We Asked… You Answered…
I talk about MS withmy mom and my dadbecause my mom is theone who has MS, andmy dad and my mombecause they are veryclose to me.
Colleen (age 8)
Sometimes my mom.
Because it might
offend my dadbecause that is the
person who has it in
my house.
Katie (age 6)
I talk with my
grandma. I choose her
because she has
MS.
Katherine (age 10)
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I would tell other kids:
“Don’t be afraid of MS
(your parent’s or any-
body’s). They are still
regular humans!”
CR, Pennsylvania
I would say: “Let outyour feelings! And exercise!”TR, New Jersey
I would tell them that I deal with thesame feelings.TS, Wisconsin
I would tell them to write
to Keep S’myelin and ask
questions so they can feel
more comfortable!
KH, Ohio
I would just say that
you have to love your
parents whether they
have MS or not!
BM, Wisconsin
I would say they should not
worry. It will be OK.… Well,
they can worry a little bit,
but not too much!
SA, Ghana, West Africa
Here are Some Tips for You!
I would say: “Justbe happy and makesure you alwayslove the personwith MS!” MS, Oregon
I would help my friend by saying, “It will be OK, my friend."AH, California
I would tell them to try to
forget it’s there most of the
time. But don’t put it totally out
of your mind at all times,
because your mom or dad still
needs your help!
SM, Pennsylvania
We asked ourreaders: “How would youhelp other kids deal withtheir feelings about MS?”
You sent uslots of very good
ideas. Here are someof your replies.
Our readersare really
smart!
I would talk to myfriends about it and ask them how theyfeel. DD, South Carolina
Here is a list of words thathave two meanings. Youcan use these or otherwords to make up yourown jokes or try someother words. Go ahead!Tickle your funny bone.
Find a word or phrase with two meanings. Example: Digs rockWrite down the two meanings in sen-tences. Example: A bulldozer digsrock. A musician digs rock..To make your joke, ask why the two
things are like each other. Example: Whyis a bulldozer like a musician?They both dig rock.
Keep S’myelin wants to hear from you. Send us your favorite jokes so we can include them in our newsletter. Or create your own new jokes and share them with us.
Q: What do you call ascared bull? A: A cow-ard.
Q: What do cows get when
they are sick? A: Hay fever.
Q: Why does a milkingstool have only threelegs? A: Because thecow has the udder.
POEM
My mom is sweet.My mom is neat.My mom has MS.Her younger kid is Tess.I really think I have a momWho can't be beat!
Shane (Connecticut) 8 years old
DUCK
BILLPEN
RINGSAW
COW JOKES
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1
3
2
Some jokes start by using a word orphrase that has two different mean-ings. Here are some tips for writingyour own “play on words” jokes.
TRY THIS
HERE IS ONE WAYTO WRITE YOUR OWN “PLAY ON WORDS”
ha ha ha!
COW JOKES
A: Because their horns don't
work.
Q: Why do cows have bells?
This girl just found out that her dad has MS.What would you do?
It’s very hot out and this dadwith MS has been out in theyard for a very long time. What would you do?
Keep S’myelin National MS Society
Broadway Station
900 South Broadway
Suite 200Denver CO 80209
What would you do?
Please send usyour answers:
ISSUE #7
KeepS'myelin
ABOUT YOU
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ISSUE #7/ABOUT YOU
PARENTS' PULL OUT
This issue of KeepS’myelin is filled with sto-ries by children who havea parent with MS. Theirstories reflect the variabili-ty of the disease itself,providing you with theopportunity to remindyour child(ren) that everyperson’s MS is different.Regardless of their par-ents’ disability the messagefrom these young authorsis clear: Mom or Dad isthere to love and take careof them.
As you read and talkabout this issue, you andyour child(ren) mightwant to draw pictures ofyour own family and thespecial things you like todo together.
This is a good opportunityto talk about your ownsymptoms and the waysyou and your family have adapted to the changesMS has brought into your
lives. Natalie’s story abouther family’s teamworkmay suggest ways for eachmember of your family tobe an active player onyour MS team.
You may find yourselfstartled—or even hurt attimes—by your child(ren)’sreactions to your MS.They may laugh at a symp-tom, get angry about yourinability to do something,or simply act as thoughthere’s no problem at all.In other words, their feel-ings may seem to be totally
out of sync with yourown. The stories in thisissue offer the opportunityto talk with your kidsabout how you all mightbe feeling. This is a greatway to share feelings andworries about MS, seethings from different per-spectives, and remindyourself and your childrenthat everyone’s feelings areunique.
You may worry that MS-related reading materialsor educational programswill be too frightening foryour children. You may bereluctant for your childrento see or hear about peo-ple with MS who have dif-ferent symptoms or aremore disabled. We hopethat this issue of KeepS’myelin will help you feelmore comfortable with theidea of meeting and shar-ing experiences with otherfamilies who are livingwith MS.
®
PARENTS' PULL OUT
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What you need:
• Juice of one fresh lemon• A thin paintbrush• White paper
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INVISIBLE INKWrite a secret message to a friend or family member!
It’s very easy. Here’s how to make your own invisible ink.
A Fun Family Activity:
Squeeze the juice from one fresh lemon.(Children may need the help of anadult.) Dip the paintbrush in the lemonjuice and write your message. To readit, hold the paper near a light bulb orplace it out in the sun. Your messagewill appear as brown writing.
Directions:
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• KEEP S’MYELIN: AnActivity Book About MSfor Kids is a 20-pagebooklet to help parentsand their children talkand learn about MStogether. The book fea-tures information on avariety of MS relatedtopics such as, what isMS, who treats peoplewith MS, feelings, andcommunication strate-gies, along with gamesand activities. (Availablein English and Spanish.)
• SOMEONE YOU KNOWHAS MS: A Book forFamilies(*), a booklet forchildren, ages 5-12. Astory about Michael andhis family explains MSand explores children’sfears and concerns.Adapted by Martha Kingfrom original material by Cyrisse Jaffee, Debra Frankel, Barbara LaRoche, andPatricia Dick.
• TIMMY’S JOURNEY TOUNDERSTANDING MSTimmy’s Journey is a 15-minute cartoon featuringa young boy namedTimmy and his trustedguide, Captain KipS’myelin. When Timmybecomes frustrated byhis dad’s MS, he is visit-ed by his new friend,Captain S’myelin, whotakes Timmy on an excit-ing trip through thehuman body to learnabout MS. Through thisjourney, Timmy gains abetter understanding ofMS and becomes moreaccepting of the unpredictabilityMS can bring.(Available in English and Spanish.)
To request these free National MS Society resourcesplease call1-800-344-4867. Publications identifiedwith an* are available for download atwww.nationalmssociety.org/multimedia-brochures.
• PLAINTALK: A Bookletabout MS for Families(*)discusses some of themore difficult physicaland emotional problemsmany families face. BySarah Minden, MD, andDebra Frankel, MS, OTR
• WHEN A PARENT HASMS: A TEENAGER’SGUIDE(*) A publicationfor older children andteenagers who have aparent with MS.Discusses real issuesbrought up by realteenagers. By DianeO’Connell with thePrograms staff of theNational MS Society.
PARENTS' PULL OUT
RESOURCES FOR FAMILIESABOUT MS
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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 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
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.
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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.
