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Someone You Know Has MS
A Book for Families
Adapted by Martha King from original material by Cyrisse Jaffee, Debra Frankel, Barbara LaRoche, and Patricia Dick
Illustrations by Claude Martinot

A Note to Parents

Children are far less fragile than you think, and are more able to accept painful realities than we generally assume. Parents often try to protect their children by hiding painful issues, but open and honest communication among family members is valuable and important. In the long run it builds trust.

Not all the issues identified in this booklet will be relevant to your child’s situation. Because MS is so variable and each family is unique, you may want to personalize this booklet when you read it aloud to your child.

There are many unanswered questions about multiple sclerosis. While it may be frustrating to you and your child, sharing this frustration can actually reassure her/him.

We hope you will use your local chapter of the National Multiple Sclerosis Society for additional support and information. If you find your family is having significant difficulty, you may want to seek family counseling or other assistance. Resources and referrals are available through your chapter. Call 1-800-FIGHT-MS (1-800-344-4867).

Debra Frankel

 

SOMEONE YOU KNOW HAS MS

“My name is Michael. My mom has MS. At first I didn’t understand it. I just knew it was a disease that doesn’t go away.”

What is Multiple Sclerosis?
Michael wondered, how do people get it? Why did it happen in his family? He wondered if it would happen to him? And it’s so hard to say Mull TA pul sklah ROW sus!

“MS is short for multiple sclerosis,” Michael’s mom said. “The brain sends messages to the body telling it what to do,” she explained. “The spinal cord is like a thick bunch of wires inside the backbone. Messages travel from the brain through these wires and then go on smaller wires to the muscles.”

“If you want to wave at someone, your brain sends a message down your spinal cord and out to your arm, telling your arm to lift up and wave,” Michael’s dad said.

But when a person has MS, a special covering for these wires gets holes in it. This covering is called myelin. Scars form where good myelin used to be.

They slow down or stop the messages. Multiple sclerosis really means many scars.

When Michael’s mom reaches out to get a coffee cup, sometimes the message doesn't get through to her hand. Then she misses.

How Do People Know They Have MS?
“We have trouble doing things. These troubles are called symptoms. Not all people with MS have the same symptoms I have, and I don’t have all my symptoms all the time,” Michael’s mother said. “The one I have the most is feeling very, very tired. Sometimes it happens all of a sudden.”

You may notice your mom or dad just doesn't have much energy sometimes.

"When we went to the supermarket she'd say, 'My legs are getting tired.' And I’d say, 'Mom, just a couple more minutes.' And she'd say, 'No, we really have to go home right now.' I thought she was being lazy. Then I found out about the MS."
   
Some Other MS Symptoms

Numb pins-and-needles feelings

Heavy legs. People stumble and can't walk fast.

Everything looks blurry.

A soft gravelly voice.

Who gets MS and why?
Most people who get MS are older than 20 and younger than 50. Doctors don’t know what causes it. They do know that MS isn't a catching disease. It just starts up on its own.

Sometimes people think they caused MS. But no one is to blame. It's nobody's fault. It is just something that happens.

Some scary questions
Michael told Crystal and Ben about the MS. It’s a good thing his parents had told him all about it, because his friends were worried. They asked lots of questions.

"Will your mom die?" Crystal asked.
"No," I said. "My mom says people who have MS live a long time."

"Will you catch it?" Ben asked.
"No," I said. "You can't catch MS from anyone. It's not like chickenpox."

"But will you get it because your mother has it?" Ben asked.
"No," I said."It's not that strong. There can be more than one person with MS in a family, but it's rare.

Some Bad Things
Sometimes MS symptoms suddenly get worse. It's called an attack or exacerbation (ex ass er BAY shun). An attack usually goes on for several weeks. Michael’s mother had to go to the hospital for special medicines.

“My mom had to go to the hospital and the house was different. Mrs. Jenkins had to come. I tried to like her but I didn’t.

“When Mom came home, she had to rest in bed. It was embarrassing because my dad was asking people to drive me to my piano lesson. Mom kept saying, ‘It’s just going to take me some time.’”

 

Some Good Things
Doctor’s can’t cure MS yet, but there are medicines for attacks and for symptoms. There are shots that can slow MS down. Michael’s mom takes shots. She takes good care of herself, and she exercises when she can.

Some people do their shots themselves. Most of the time Michael’s dad does it for her.

“I’m used to the
idea now. Mom says
the shots keep
her MS quiet.”

What happens now?
“The doctor told me to go ahead with my normal life, and work around extra problems,” Michael’s mom said.

Like Michael’s mom, your parent will always be the same person—but some things may need to be done differently.

MS can get worse or better or stay just the same. Sometimes it practically disappears. This is called a remission. A remission can last for a few weeks or for years. Then symptoms come back. This is why MS is called unpredictable.

“Right now, it hardly seems like she has MS. She has plastic leg braces and she walks just fine!”

 

Your parent might need a brace, a cane, a walker, or a wheelchair. Your parent might use a scooter, even inside the house.

Some kids feel embarrassed seeing their mom or dad using special equipment like that. But equipment helps people with MS get around. Instead of waiting for your dad, you might have to chase him! And if you’re little, you might get rides.

 

THE FEELINGS

“Dad bought pizza and Mom just exploded. All we did was leave some boxes in the kitchen. Then she said she wasn’t really mad at us. It hurt her feelings that the MS wouldn’t let her cook our dinner. MS is a disease that can really make a person crabby.”

MS is frustrating. You may find it easy to go along with some of the changes MS brings and very hard to put up with others. You're bound to have some mixed up feelings.

Feeling Scared or Sad
No one knows the cause of MS, and no one knows how to cure MS--at least not yet. Everyone in Michael’s family has a hard time with that.

When you feel afraid, try to find someone to talk to. You may be surprised at how comforting other people can be.

You may notice that other things in your life seem to go wrong. Your grades may suddenly drop, or your softball game is off. There may be things your family can’t do together anymore. Your life is different now.

“She said she wouldn’t lose MS until they found a cure. It made me want to find a cure right away.”
   
“I like it when she draws pictures and explains what’s happening. It helps to know what’s going on because Mom can be very sad and then she’s okay an hour later.”
The day after Michael found out about the MS, he was angry at his teacher, and he got a lot wrong on a test. The teacher said, “I didn't expect it from you. You're usually a good student.” Michael blurted out, “Why don't you just leave me alone?"

When things looked really bad, and Michael just felt like crying—he did. A good cry made him feel better. Something that was choked inside got out.

"I said, 'Mom, you're a regular mother.' And she said, 'Yes.' I said, 'But you don’t ride your bike anymore.' She knew what I meant, and she said, 'But I can still be a regular mother.' And she is. She’s good at cards, and tells me stories, and does a lot of things. She came on my school field trip."

Making Bad Feelings Better
Not everyone finds it easy to tell private feelings. But there are lots of things to do with bad feelings.

Here are some things Michael does: Draws a picture. Makes something out of wood. Writes a poem or a story. He especially likes telling about monsters. Runs around the block. Goes bike riding. Plays basketball.

“Hammering makes
me feel good!”
“I throw the ball really hard!”

Sometimes Michael goes into his room and takes it out on his pillow. He punches it and punches it and that makes him feel better.

“I can’t rough-house with my mom, but when she doesn’t see too well I’ll tell her what’s happening on TV, and I tell her wrong, and then we all crack up.”

Feeling Angry and Picked On
You aren't being mean if you don’t like how your life has changed. Getting angry isn't a terrible thing, especially if things are unfair. Sometimes, family fun gets canceled with no warning. Michael’s family never goes to the beach anymore, because the hot sun makes his mom’s MS feel worse.

“It just isn’t fair! Why did this have to happen to us? I wish I had never heard of MS!”

Michael even wondered if anyone cared about him any more. People asked him about his mother and not about him. “I feel left out!” he shouted one night. His dad wasn’t angry. They sat down and talked about it.

Later, the whole family went to a Chapter Family Day, and there were dozens of other kids with parents who have MS. Michael had fun playing with Robin. Her mom uses a scooter all the time.

Getting Things Done
Michael has a lot of housework. Of course, Crystal and Ben have chores too. Crystal has to rake leaves and fold laundry. Ben clears the table. And they don’t have a parent with MS.

Still, Michael has to do more. There’s no way to make that seem fair. But his mom and dad are proud that he can be so responsible.

“I have to make my bed, take out the garbage, and set the table—every day. On weekends, I pick up my room, run the vacuum cleaner, and baby-sit Jenny. I know I’m helping, and that’s good, but inside I sometimes feel mad. I don’t like to do it, but I do it anyway.”

Michael and his dad made a schedule so Michael wouldn’t always get stuck loading the dishwasher. He hates that job. And they are learning to cook together. They found out it helps to plan the chores. They made a chart out of cardboard and put it up in the kitchen, to keep track of who did what.

 

YOU ARE A SPECIAL FAMILY

No one likes MS. But it's not all doom and gloom. Like Michael, you are special. Your family includes a person who doesn't always feel well, and needs extra help. The sharing you do together can make your family feel close.

“If Mom isn’t feeling good I have to put myself to bed, because Dad has to take care of Jenny. That’s okay though. I like knowing how much I can do on my own.”

 

“We all collect money for MS research. Lots of people come to the MS Walk, and it’s fun.”

Even if your parent can't go skating with you or take you on long hikes, there are many things you can do together. If your parent is at home during the day, you may have extra time together that other kids don't have.

“My dad say’s it’s important to remember that scientists all over the world are working very hard to find a cure for MS. They are discovering more and more every day.

“And my mom says it’s important to remember we can solve some of the problems MS makes by helping each other.”

"I'd tell other kids who just found out their mother has MS, 'It's not as bad as you think. She'll still be your mother, no matter what.'"

 
     
 
For additional information
Activities in your chapter
Keep S’myelin (A full color newsletter for children 5-12 years old)
Teen InsideMS (Online magazine for teens)
MS Walk
 
     
 

Our thanks to the parents, children, and staff of the Central New England and the Wisconsin Chapters, who shared insights and experiences for this booklet: Eric, Marilyn, and Michelle Bernstein; Anthony, Chuck, John, and Nancy Delgreco; Jennifer and John Dick; Judy and Pamela DiPalma; Mary Hooley; Nicole Klabunde; Gail and Kristin Lubanski; Ann Shuman; and Andrea Ternes. Thanks, also, for ideas and encouragement, to: Mike Boni, Alan Brightman, Pat Cunning, Marie Harrison, James Lehrich, MD, Marjorie O’Byrne, Joyce Rich, and the Chapter Services Committees of the Central New England and the Wisconsin Chapters of the National Multiple Sclerosis Society.

Martha King is director of Publications at the National MS Society.

Claude Martinot is a professional artist and illustrator who specializes in educational materials for children. (The illustrations in this Web version is just a portion of what appears in the fully illustrated booklet. Call your local chapter to obtain a copy of the printed booklet.)

This publication is supported by contributions to the National MS Society from its members and friends.

Reviewed by members of the Client Education Committee of the National Multiple Sclerosis Society’s Medical Advisory Board.

 
     
  Copyright © National Multiple Sclerosis Society, 2005  
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