What is ALS/MND?

In the human body there are lots of muscles, and we use many of these to move. But before muscles can move they have to receive instructions or messages from the brain. The messages are sent to the muscle by nerves. These nerves are like the telephone wires which carry messages to operate the telephone in your house.

So, if you want to kick a ball, a message is carried from your brain, along the nerves to the muscles in your leg to tell them to kick. This happens very quickly, and you can't feel the messages going through.

When someone has ALS/MND, something goes wrong with these nerves, which are called neurones. Gradually, fewer and fewer messages get through, and the muscles will not be able to move at all however hard the person tries.

What parts of the body are affected by ALS/MND?

The main effects are on the muscles in the legs, arms, mouth and throat, but not everyone has all these problems.

The people who have problems moving their legs may have difficulty walking, standing or climbing stairs. They may also find it hard to keep their balance and may fall. To help them get around they may need a stick, or a frame and in some cases a wheelchair.

Those with problems in the arms and hands may find it difficult to hold and carry things. They may be unable to cook, use tools or take their cloths on and off. Some people cannot move their arms at all.

We use a lot of muscles in the mouth and throat when we eat and talk. For some people with ALS/MND it is these muscles that are affected. It may be difficult for them to talk clearly. Their voices sound strange and it may be hard to understand what they are saying. They may need to write down what they want to say or may need equipment, such as a computer, to help them to communicate.

Others may find it difficult to eat and drink. Because of this they may have specially prepared food and need to eat very slowly. They are often worried that food will go down "the wrong way" and start them coughing.

Other ways in which ALS/MND may affect people.

ALS/MND affects people's bodies in different ways and so nobody can say exactly what will happen next. But whatever happens the person is still the same "underneath" as they were before the illness started. Their mind is still the same.

Most people with ALS/MND get tired quickly and need to rest a lot. Some find the illness makes them cry easily. Others find it makes their laugh sound strange.

People sometime get angry when they cannot do simple things for themselves, like getting dressed, going to the toilet, or scratching and itch. They may become irritable and cross as they have to ask for help.

Lots of things stay the same when people have ALS/MND. They feel pain when they are knocked or have to sit in one place for a long time. They can hear....see...and think. Even if talking is difficult for them they may find other ways of letting you know what they want to say, perhaps by a hug, a frown or a smile.

What causes it?

We don't know, but a lot of research is going on to try to find out. We do know that it is not catching.

Nobody can cause ALSMND in another person or make them get worse. We all think hurtful thoughts, or say horrible things to other people sometimes, but this will not give them ALS/MND.

Do children get it?

No. Only adults get ALS/MND. It is most common in people between 55 and 70 years old.  There is however juvenile ALS and we know of at least two cases of 19 year olds who have had ALS/MND in Canada.

Will I get it when I am an adult?

In most cases we can say that you won't. There is a rare type of of ALS/MND where more than one member of the family has it. Scientists and doctors are working very hard to try to find out what goes wrong in these cases. Hopefully, in time, we will be able to prevent people in the same family getting ALS/MND.

Do people die because they have ALS/MND?

People with ALS/MND do not get better. Sadly, it is an illness from which people die. We do not know how long people will be ill as ALS/MND varies a great deal from one person to another.

Your feelings.

When you Mum or Dad or someone special has ALS/MND it is natural to feel sad when you remember how they used to be. Sometimes you feel so sad that you want to cry. Don't feel ashamed or try to bottle it up. We all want to cry when we're upset. Your parents may cry too, when they are sad, even if you don't see them doing it.

You may find that the grown-ups in the family seem to be thinking of something else when you are with them. They may often seem sad or upset. They are probably worrying in their own way about what is happening. Do not think that you are the cause of their upset. They have not stopped loving you.

You may be worried and afraid because you don't know what is going to happen. You may be frightened to ask questions. But it is OK to ask questions. Try to talk to your Mum or Dad, or perhaps you have an uncle, aunt or another adult outside the family you could talk to. Talking often helps and it is one way of letting feelings out. It also lets the adults know how you feel... and that is important.

Perhaps someone has already spoken to your teacher at school and told them about your Mum's, Dad's, or someone special's illness... try talking to your teacher if you are worried. Don't forget that the ALS/MND Associations are there to help you as well as adults.

You can't be sad all the time. Don't feel guilty when you are happy. Try to have fun as you used to - it's important, and it is good for the person who is ill to see you enjoying yourself.

At times you may feel angry; the person with ALS/MND is getting all the attention and their illness seemed to have changed everything. But then you may feel guilty for feeling for feeling angry. You may be mixed up inside but not know why.

We all feel angry at times when life doesn't go as we want, and we have to learn to cope with these feelings. It causes hurt if we lash out at someone, so it is important to look at other ways to get rid of these feelings.

Play with your friends, listen to your favourite music, draw or write a story or poem - they are all good ways to feel better.

Your parents will not want the illness to affect your life, of course, it does in many ways.

You may not want your friends to come around to the house as you feel embarrassed about the way the person has changed because of ALS/MND. But your best friends will understand if you tell them about the illness and explain too, that underneath, the person is just the same as they used to be.

You might want to tell your friends about this web site so they can understand more about ALS/MND.

Things to do in the future.

Knowing that your Mum or Dad or someone you love is not going to get better is sad, and hard for you. There may be things you can do to make your time together special. You may find small but important tasks you could do for them and perhaps you could make a scrapbook of photographs and stories about the things you have enjoyed doing and the happy times you have had together.

You will be able to look at this book later and remember how much you loved each other. Nothing will ever be able to take away these memories from you.

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