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Elaine's Book

 

Dear Friend,

I have MS

A Book for Friends of Teens

With Multiple Sclerosis

 

Dear Friend,

 

I have a disease called multiple sclerosis. There are not too many children that have this disease, but you may know an adult that has it.

 

 

 

Let Me Tell You More

The central nervous system (CNS) consists of the brain, spinal cord, and the optic

nerves. Protecting the nerve fibers of the CNS is a protective insulation called myelin.

This helps nerve fibers conduct electrical impulses.

 

MS is a disease of the CNS. The immune system goes haywire and attacks the myelin.

It attacks in many areas (mUltiple) and leaves scar tissue (sclerosis). This affects the

brains ability to send and receive messages. Think of the CNS as thousands of electrical wires. A mouse gets in and chews the wires in many places. Then you get some electrical tape to try to fix the damage. The places you patch will work again, but not as good as before. There may be some chewed spots you can't find. In my brain, those are areas with permanent damage.

 

 
 

 

 

 

 

 

 

 

 

 

The disease may have come from my immune system making a mistake when I was sick with a virus, and it attacked my CNS instead. There is a lot of research going on to find the cause and a cure.

Some Questions You Might Have

1.I won't die from MS.

2.You can't catch MS from me.

3.There is no cure.

4.There are medicines. So far they all involve shots. Some are daily, some are just once a week. None of them are fun.

5.Symptoms depend on what part of my CNS is affected

6.Some of the symptoms that come and go are poor balance, poor coordination, slurred speech, weakness, tremors (like shaky hands), numbness, extreme tiredness, sensitivity to heat, tingly sensations, dizziness, memory problems, problems concentrating, and loss of the ability to move some parts of my body. If my optic nerve is affected, I may have blurry vision or even blindness.

7.When I am in remission, I may have no symptoms that are visible. I won't look or act sick, but the MS is still there.

8.When I have a relapse, my immune system is attacking my CNS. I may have new symptoms or myoid symptoms may get worse. My doctor may give me additional medicine to reduce the damage. This may be an IV, and I may miss school.

 

 

How DoesMSAffectMyFriends and I

(Iasked other teenagers with MS for help on this section)

 

Since the scars from MS can be anywhere in the CNS, this makes the symptoms

different for each of us.

All of us have tiredness, even after a good nights sleep. Sometimes this is not tiredness like I need a few more hours of sleep; it's more like I need a week of sleep. Every cell of my body is tired. For those of us that are affected by tiredness all the time, there are special medicines we can take to keep us awake.

Many of us have trouble concentrating and remembering things. This is making school more difficult. We may be getting some special accommodations at school, like sitting in the front row or getting tested in a separate room.

 

Some of us have numbness and tingly-ness, and even loss of feeling in parts of our body. This can be anywhere- face, hands, feet, legs, and arms. This is not always on both sides of the body, and may move around to different parts.

A few of us have vision problems in one or both eyes, or even blindness. Glasses won't help because the problem is in the optic nerve.

 

Slurred speech is another problem. It is difficult when people don't understand us,

and even worse when people think we are drunk.

 


Weakness makes physical activity difficult. Even walking or carrying books can be hard at times.

 

 

 

 

How Can You Help Me

 

I just want to be a normal teenager. I am the same person I was before, so don't treat me any differently. I may need your help from time to time when my MS symptoms appear. Include me in activities; I'll let you know if I can't do something.

 

When my symptoms cause coordination, balance, or weakness problems, you can


help by:

 

1.If I have the drop-sees or weakness, you can carry things for me.

2.If I'm having problems with balance take my arm and lead me so I don't crash into things or fall down the stairs.

 

3.Keep me away from things where lack of coordination can cause me harm.

4.Please don't pick on me, I can't help it.

 

5.My reaction time may be slower, so make sure I am ready before you throw me something.

 

 

When I'm having problems with tiredness:

1.Find a place for me to rest.

2.Slow down so I don't get tired as quickly.

 

 

 

 

 


3.I will probably need to sleep at a sleep over party. Throw me in a corner and try not to step on me.

 

4.Don't be mad if I have to cancel or go home early. I’d much rather be with you than sleeping.

5.Ifwe go somewhere involving a lot of walking, I may ask you to push me in a rented wheelchair. That way I can keep my energy for the fun stuff.

 

 

When I'm having problems with concentration:

1.Remind me even if you told me before.

2.Help me keep track of what I have to do in a journal. In class make sure I write assignments in the journal (I won't get mad if you act like mom, it will save me the misery later).

3.Give me a hint.

4.Help me stay on track and not get distracted.

5.Help me stUdy. I will probably need to review things more than you.

6.Let me borrow your notes from class. I may notheable 'to write asfast.

 

If I get over heated, my symptoms may be worse.

1.Park me in a cool place.

2.Help me get a cold drink.

3.I will go back to the way I was as soon as I cool down.

4.Remind the gym teacher that I'm not goofing off.

 

 

 

 

IfI have vision problems:

1.Let me take your arm and lead me.

2.When I am in a new place, tell me where things are.

3.Bringme along to school events and give me a play by play.

 

 

4.I may use text books on tape, but can use helpers to read other things to me.

 

 

When I have speech problems:

 

1.Be patient

2.Listen closely

3.Repeat back what you think I said, if you aren't sure

4.If you still can't understand, ask me to write it down.

5.Remind others that I have a medical problem, not a drinking problem.

If I am out of school:

 

1.Call

2.Come visit

 

 

 

There are a few things that are dangerous for all teens, but more so for those of us with MS. Drugs and alcohol can cause more damage to a CNS that already has problems. The medications used to treat MS cause birth defects, so an unplanned pregnancy could be disastrous.

 

 

 

This booklet was written as a Girl Scout Silver Award and

High School graduation project byElaine Mackey.

 

After being diagnosed with multiple sclerosis, she had

a difficult time explaining the disease to her friends. She

hopes that this booklet will give teens a better

understanding if they have a friend with MS.

 

She would like to give a special thank you toClarissa,

Roseanne, Taylor, Emily, Sophie, Lori, Kyle, and Kirk

for their feedback on how MS affects them. Also

thank you to the teens atA2A camp, August, 2006

for their contributions.

 

Thanks also toKim Koch of the National Multiple

Sclerosis Society for facilitating the editing and

publication of this booklet.