RIP-140 Interacts with Multiple Nuclear Receptors by Means of Two ...
A NEWSLETTER FOR KIDS ABOUT MULTIPLE SCLEROSIS€¦ · is why we say that MS is unpredictable....
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ISSUE #6/ EQUIPMENT A NEWSLETTER FOR KIDS ABOUT MULTIPLE SCLEROSIS 1 any people with MS use different types of tools or gadgets to help them move about, have fun, and do everyday activities. For example, someone you know may use a cane, a wheelchair, a special chair glide that goes up stairs, grab bars in the bathroom, a sit-ski (a way to ski sitting down!), or a com- puter that works by talking to it! In fact, we all use tools to help us with every day activities: a back pack to help us carry things, glasses to help us see more clearly, a shop- ping cart at the super market... Can you think of any other tools we use? erhaps your mom or dad has made changes to your house to make it easier and safer to get around, like building a ramp or adding a grab bar in the bathroom. All of these things can be very helpful for someone with MS, but some may seem strange at first. alk to your mom or dad about any new tools or changes that may be com- ing to your house. Ask if it is safe to try the equip- ment yourself (with adult supervision). And ask lots of ques- tions about how it works and why your mom or dad needs it. That way, the new things will soon become familiar. And you will understand how these things can really be helpful in your house! T M P LIFE WITH MS TOOLS CAN MAKE Easier ®
Transcript of A NEWSLETTER FOR KIDS ABOUT MULTIPLE SCLEROSIS€¦ · is why we say that MS is unpredictable....
ISSUE #6/ EQUIPMENT
A NEWSLETTER FOR KIDS ABOUT MULTIPLE SCLEROSIS
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any people with MSuse different types oftools or gadgets to helpthem move about, havefun, and do everydayactivities. For example,someone you know mayuse a cane, a wheelchair,a special chair glide thatgoes up stairs, grab barsin the bathroom, a sit-ski
(a way to ski sittingdown!), or a com-puter that works bytalking to it! In fact,
we all use tools tohelp us with every dayactivities: a back packto help us carry things,glasses to help us seemore clearly, a shop-ping cart at the supermarket...
Can you think of anyother tools we use?
erhaps your mom ordad has made changesto your house to make it easier and safer to getaround, like building aramp or adding a grabbar in the bathroom.All of these things canbe very helpful for someone with MS, but some may seemstrange at first.
alk to your mom or dadabout any new tools orchanges that may be com-ing to your house. Ask ifit is safe to try the equip-ment yourself (with
adult supervision). And ask lots of ques-tions about how it works and why your
mom or dad needs it. That way, the newthings will soon become familiar. Andyou will understand how these things can
really be helpful in yourhouse!
T
M
P
LIFE WITH MSTOOLS CAN MAKE
Easier
®
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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 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.
Keep S’myelin Readers:WE WANT YOU!
Send to:National MS Society
KEEP S’MYELINBroadway Station
900 S. Broadway Ste. 200Denver CO 80209
NEW MS. KS Kids-issue#6 FINAL 7/17/08 6:08 AM Page 2
COLOR ME
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Sometimes my mom rides a scooter. We have a ramp to our house.
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INTERVIEW WITH
KEEP S'MYELIN: Does yourmom use any special toolsor have you made anychanges to your house tohelp her do everydaythings?
SCOTT: Yes. My mom uses awalker and a wheelchair. Wehave a porch lift on our house.This year, we moved my momand dad’s bedroom down-stairs and built a bathroomwith a roll-in shower and
grab bars.
We also changed the kitchenso there’s a roll-under sinkand a laundry in the kitchen.And we put in an intercomso I can talk to my mom anddad’s room from my room!
KEEP S'MYELIN: How didyou feel about all thosechanges in your house?
SCOTT: I liked watching theworkmen when they werehere. The house feels biggernow and more organized.It’s easier for my mom.Before, I helped carry herwalker up the stairs and itwas hard for me, too. I likewatching movies with herand eating junk food in bedin her new room! And I reallylike the intercom.
KEEP S'MYELIN: What doyour friends think of all thenew things at your house?
SCOTT: I gave my friends aride in the lift. They think it’scool. At my birthday theyasked my mom why she uses a wheelchair. She told them that she has MS and it makes it hard to get around.
Scott’s mom has had MS since he was twoyears old. She volunteers at Scott’s school.She’s helped to make changes at the school.This year, she succeeded in having theschool build a curb cut and put in a newdoor. Soon they will install an elevator so itwill be easier for people with wheelchairsto get around.
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What did the eggs do
when the mother hen
told them a joke?
What do you call
cheese that is not
your own?
Why do witchesuse brooms?
Why was Thomas Edisonable to invent thelight bulb?
They all cracked up.
He was very BRIGHT.
NA-CHO cheese
Because vacuum cleaners are too heavy.
JOKES
What would youget if you crossed
a frog with a bunny?
A bunny ribbet.
JOKES
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My name is Emily Anne and I am 10years old. My grandma has MS. Shelives with me, so I see her all the timehaving trouble walking around anddoing things. She does the dishes,laundry and cleaning. I keep telling herto stop doing what she is doing, butshe won’t. She has a chair lift to goupstairs. I would put all the money inthe world to get my grandma to getbetter. That is my opinion.
By Emily Anne
MMyy GGrraannddmmaa hhaass MMSS!!
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All kinds of things CAN make ourlives easier. Glasses CAN help us see.A calculator CAN help us add num-bers more quickly. A list CAN help us remember what we need to buy at the grocery store.
We all use tools everyday thatCAN really make a difference. There are lots of words thatbegin with CAN. How manywords can you complete?
ANSWERS ......
CAN GG MMEEAA
7. A container fordrinking water.Sometimes often carried by campers.
CAN
1.Candy 2.Canoe 3.Canary 4. Cancan 5. Candle 6. Cane 7. Canteen
6. A stick used as anaid in walking canhelp people keeptheir balance.
CAN
ANSWERS
4. A fun danceinvolving highkicks.
CAN
2. A light, narrowboat with point-ed ends. You use paddles to moveit forward.
CAN
3. A small, yellowsongbird often keptin a cage.
CAN
5. A tall, narrow tubeobject made of waxwith a wick inside.
CAN
1. Sweet treatsmade with sugar that children especiallyenjoy at Halloween.
CAN
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ISSUE #6
KeepS'myelin
EQUIPMENT
Contact your National MS Society chapter at 1-800-344-4867.
Why does mymom need touse a cane onsome days,but not onothers?
People with MS can feel different from day today. On some days yourmom’s legs may feeltired or weak, or shemay not have very goodbalance. On other daysshe may be just fine.That’s why we say MSis unpredictable.
Q.A.
SSIINNCCEE YYOOUU AASSKKEEDD......
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Introducing new equip-ment to your home ormaking home modifica-tions may be disconcert-ing for some young chil-dren. Children, for themost part, are creaturesof routine! They likefinding things the waythey left them and mayfind changes to theirhome environment dis-turbing and disruptiveto their sense of security.As with all change, a lit-tle preparation can easethe way. So, if you areplanning on purchasinga new scooter, wheel-chair or a cane,installing a grab bar,building a ramp, ormaking other changes toyour home, here aresome tips on using thisissue of Keep S’myelinto prepare your children :
READ “Tools Can MakeLife with MS Easier”together and talk aboutthe different tools yourchildren use to make theirlife easier.
READ the interview withScott about the changeshis family made to theirhouse. If you are havingrenovations done, prepareyour children by tellingthem what is going tohappen (e.g. the workmenwill come tomorrow andstart to build a ramp rightnext to the front steps sothat I can get in and outof the house in my wheel-chair. They will be here for3 days and will probably
make a lot of noise. When
they are finished, you will be able
to use the ramp or thesteps to come in thehouse. And I will be ableto go in and out of thehouse more easily!)
TALK about the equipment mentioned andillustrated in this issue.Talk to your childrenabout new tools or equip-ment you plan to pur-chase. (e.g. "I am going tobuy a new kind of wheel-chair. It has a battery andI can drive it by just mov-ing a switch on the arm-rest. I’ll probably keep itin my bedroom when I’mnot using it. It’s only forme to use but I will giveyou rides on my lap!")
HOW TO READ KEEP S’MYELINWITH YOUR CHILDREN
PARENTS' PULL OUT
ISSUE #6/ EQUIPMENT
®
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PARENTS' PULL OUT
Provides information on assistive technology andrehabilitation equipment to consumers, profession-als and businesses. The ABLEDATA database con-tains information on products from canes to voiceoutput programs. The database contains detaileddescriptions of each product including price andcompany information.
From the ABLEDATA website, www.abledata.comyou can search for different models of a specificdevice, such as powered wheelchairs, or for prod-ucts which address a functional need, such as eating.
ABLEDATA
Is a non-profit organization with a mis-sion to connect adults and childrdisabilities to technology. ATA prtechnical assistance, training and support to 40 resource centers around thecountry and to technology vendors. Theresource centers are places where peoplecan explore computer, telecommunica-tion systems and adaptive devices andget connectd to technology and adaptiveequipment vendors.
ALLIANCE FORTECHNOLOGY ACCESS
(ATA)
For more information contact ATA at 707-778-3011 or www.ATAccess.org.
If you do not have access to theinternet, you may contact oneof their information specialists at 1-800-227-0216.
Offers plans for design and construction of modular wheelchair ramps.www.wheelchairramp.org
THE HOME WHEELCHAIR
RAMP PROJECT
RESOURCES FOR P
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PARENTS' PULL OUT
Is a resource directory forthe physically challenged.www.blvd.com
th a mis-en with
providesnd sup-und thedors. The
e peoplemunica-ces and adaptive
ESS THE BOULEVARD
Book by Shelley Peterman Schwarz
Demos Medical Publishing1-800-532-8663 orwww.demosmedpub.com
To learn more about the NationalMS Society resources availableto you and your family contactyour chapter at 1-800-344-4867or www.nationalMSsociety.org.
TIPS FOR MAKING LIFE WITH MULTIPLE SCLEROSIS
EASIER
How Can YouSubscribe to KeepS’myelin?Call 1-800-FIGHT-MS. You willbe connected to your local chapter.Ask them to add your name to theKeep S’myelin distribution list. It’sfree! Keep S’myelin is publishedquarterly by the National MSSociety.
As of the printing of this newsletter,all phone numbers and web addresseswere accurate. These are subject tochange, however. If you discover an
inaccuracy, we encourageyou to check with
Directory Assistance or aninternet search engine.
OR PARENTS
4
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.
© 2008
Please give us feedback.Send your questions or ideas to:
National MS SocietyKEEP S’MYELINBroadway Station900 S. Broadway Ste. 200Denver CO [email protected]
®
FAMILY ACTIVITYTry this activity with your children.
Draw some of the tools your familyuses every day to make life easier…
