So what is MND, anyway? motor neurone disease (MND) Contents

So what is MND, anyway?
A guide for young people affected by
motor neurone disease (MND)
Contents
1. What is MND?
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What is MND?
Types of MND
What causes MND?
2. Living with MND
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Symptoms
What equipment does someone with MND need?
Who might be involved?
3. MND and Me
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Emotions
Telling friends
What can I do to help?
Coping
Are there any positive things about MND?
Collecting memories
What will happen in the future?
When someone dies.
4. Getting support
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How the MND Association can help
Who else can help?
5. Glossary – what do all the long words mean?
6. Acknowledgements
7. What do you think?
1
What is MND?
So what is motor neurone disease?
The human body has lots of muscles and we use many of these to move.
However, before muscles can move, they have to receive instructions or
messages from the brain. The messages are then sent to the muscles by
nerves. These nerves are called motor neurones.
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. You don’t feel this
happening as the messages travel too quickly.
When someone has motor neurone disease (or MND for short), something
goes wrong with these nerves. Gradually fewer and fewer messages get
through. When this happens, the muscles won’t move properly and can
start to waste away because they are not being used. This can mean that a
person with MND can’t do some of the things they used to.
Who gets MND?
MND is a disease that only affects adults, so children won’t get it. It is more
common in people over the age of 50, but some adults are diagnosed when
they are younger than this. MND is quite rare and only about 5,000 people in
the UK have the disease.
Are there different types of MND?
There are four main types of MND, each affecting people in different ways.
Although someone might be diagnosed with a particular type, one type can
turn into another over time. This means that sometimes a person might not
know what kind of MND they have.
Amyotrophic lateral sclerosis (ALS) is the most common form of MND.
People who have this form of the disease often start by having weakness and
wasting in their arms and legs. Someone may first notice they are tripping up
when walking or that they drop things.
Progressive bulbar palsy (PBP) affects about a quarter of people diagnosed
with MND. People with PBP may find that their speech starts to slur or they
may have difficulty swallowing.
Progressive muscular atrophy (PMA) affects only a small proportion of
people. To start with people may notice weakness or clumsiness in their
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hands.
Primary lateral sclerosis (PLS) is a rare form of MND causing mainly
weakness in the lower limbs, although some people may experience
clumsiness in the hands or speech problems. Many people with PLS live as
long as they would have if they didn’t have the disease.
Facts about MND…
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MND is quite rare
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MND can affect any adult at any age but most people diagnosed with
the disease are over 50 years of age, with the highest incidence
occurring between the ages of 60 and 70 years
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Men are affected slightly more often as women
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The number of people who will develop MND each year is about two
people in every 100,000. This is known as the incidence of MND
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The number of people living with MND at any one time is approximately
seven in every 100,000. This is known as the prevalence of MND.
To put it another way, imagine Wembley stadium full of people (it holds nearly
100,000 people), in this number of people one or two would be likely to
develop MND each year (incidence) and six or seven would have MND at any
one time (prevalence).
Diagnosing MND
When someone first realises that something is wrong they usually go and see
their GP (family doctor) for advice. The GP might refer them to see a specialist
doctor for tests. This is usually a neurologist. A neurologist is a doctor who
specialises in conditions that affect the brain and nerves.
The neurologist will examine the person and ask them lots of questions to
build up a picture of all the symptoms that a person has and how the
symptoms are affecting their daily life.
There is no single test that proves someone has the disease, so specialists
will do lots of different tests to make sure it isn’t something else before they
tell someone they have MND.
“I can’t actually recall being told that mum had MND. I just remember feeling
confused and that everything was changing.”
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Tests might include scans of the brain or other parts of the body, physical
examinations, and tests that check how well a nerve is working.
“My dad kept going for tests, but it took ages for them to finally decide it was
MND.”
It can take a long time to diagnose MND, sometimes over a year, and people
can feel very frustrated and worried during this time. Once the diagnosis has
been made, the neurologist will refer the person to other health professionals
who can help with the symptoms of MND.
“By the time they finally said it was MND my mum and dad had already
guessed, it was almost a relief to know for definite.”
You can find out more about other health professionals and what they do in
the ‘Who are all these people’ section.
Is there a cure for MND?
Unfortunately, there is no cure for MND at the moment. People who have
MND do not get better and people do die from MND.
MND varies greatly from one person to another so it is very difficult to say how
long someone will be ill.
“I thought they’d be able to give some tablets and make it get better. Now I
know it is not like that.”
MND is called a ‘progressive’ disease. This means that people do not get any
better and over time, their symptoms become worse. Everyone with MND is
different and sometimes these changes can take a long time; other people
find their symptoms get worse more quickly.
Because MND is a progressive disease, symptoms can start in one part of the
body (for example, the legs) and then progress on to other muscles (for
example the arms or throat).
It is difficult to predict how quickly MND will progress and which muscles
might be affected. Not everyone with MND has symptoms in all parts of their
body.
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People often ask how long a person will live with MND before they die. This is
a very difficult question to answer as the disease progresses differently from
one person to another and it depends on what type of MND they have.
“When my mum told me that Gramps had MND I thought he would get better,
but then she told me that they couldn’t cure him.”
Scientists are working really hard to find a treatment for MND
and everyone hopes that one day they will be able to cure the
disease.
What causes MND?
Nobody knows exactly what causes MND, but a lot of research is going on to
try to find out. We do know that it isn’t catching. And we also know that
children can’t get MND. Scientists think that many factors add together to
make someone more likely to get MND.
“My dad looked on the internet and had all these ideas about what caused his
MND, but really, nobody knows. It wasn’t his fault.”
In the last 20 years there has been a lot of research into MND and scientists
from all over the world are trying to find out what causes the disease.
It is nobody’s fault that someone gets MND. It is not caused by
something that someone does; nobody is to blame when someone
gets MND.
Will I get MND one day too?
MND is not infectious; you can’t ‘catch’ it or pass it from one person to
another. Usually a person who has MND won’t know of anyone else in their
family with MND. However, there is a very rare type of MND where more than
one person in the same family has had it. Scientists and doctors are working
hard to try to find out why this happens.
“When I first heard about MND I was worried that I would get it. Now I know
that children don’t get it and that it is a rare disease. I don’t feel as worried.”
MND is quite rare so the risk of you getting it in the future is very small.
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Living with MND
What are the symptoms of MND?
MND affects mainly the muscles in the legs, arms, mouth and throat, but not
everyone has all of these problems.
Some muscles in the body are never affected by MND. For example, the
heart is a big muscle that pumps blood around the body, but it is not affected
by MND.
MND doesn’t affect the ‘senses’, so people with MND can still see, hear,
smell, feel touch and taste food like they used to do.
Everyone who is diagnosed with MND experiences different
combinations of symptoms and not everyone will have every symptom.
People who have difficulty moving their legs may also find it hard to walk,
stand, climb stairs or keep their balance. Some people may need to use a
stick, a walking frame or a wheelchair to help them get around.
“It started with dad tripping up and finding it hard to go upstairs. After that the
physiotherapist gave him a walking frame so he didn’t fall, and then later he
got a wheelchair.”
People who have difficulty moving their arms and hands may find it hard to
carry things or pick things up. Some people use special equipment to help
them do everyday tasks like getting dressed and undressed.
We use a lot of muscles in our mouth and throat when we eat and talk. Some
people will find it difficult to talk clearly, so their voice may sound strange and
it might be hard to understand what they are saying. They may need
equipment to help them communicate, such as a computer.
Some people may find it difficult to eat and drink and might eat more slowly
than they used to. They might also eat food that is mashed or pureed, as this
is easier for them to swallow.
MND can affect the muscles in the body that help us to breathe. Some people
with MND might find it takes more effort to get air into their lungs and have
trouble breathing.
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Some people use a machine with a mask that covers their nose and mouth to
help them to breathe. This is called ‘non invasive ventilation’ or NIV for short.
You can find out more about NIV in the ‘equipment’ section and in the
section ’What equipment does someone with MND need’?
Many people with MND will not experience any changes in their brain, so their
personality remains the same. However, MND can make it harder to do some
things, for example if the muscles in the hands are affected it can make it
difficult to get washed or dressed. This can make the person with MND feel
frustrated or grumpy; but remember; they are usually frustrated at MND, not at
you.
Some people with MND find that they laugh or cry more easily than they used
to. This is a symptom of MND and is called ‘emotional lability’. Sometimes
people with MND might laugh or cry for no reason and you might find this hard
to deal with; for example, it might make you feel embarrassed or sad. (You
can find out more about coping with these feelings in the MND and Me
section. )
A small proportion of people with MND will undergo some changes in their
brain that mean they act or think differently to how they did before. We call
these ‘cognitive changes’. For example, some people with MND might find it
more difficult to make decisions than they used to do.
Many people with MND find that it makes them very tired (fatigued). This
means they might need to rest more during the day, or go to bed earlier at
night.
When a person with MND becomes very tired, other symptoms can feel
worse. For example, walking might be more difficult, or someone might not
feel like eating because it requires so much effort.
Some people with MND know that they can become very tired easily so might
plan their day so that they do more activities in the morning when they feel
less tired and then rest in the afternoon.
“It doesn’t change them, it just changes the way they do things.”
Some people find that they have trouble with saliva in their mouth. If they
have problems swallowing, then saliva can ‘pool’ in the mouth and either
dribble out of the mouth and on to the chin or make the person feel like they
might choke on the saliva.
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Other people find that their saliva becomes very thick and sticky, causing
them to cough. Both these symptoms can be very distressing for the person
and they might feel embarrassed, especially if they have to keep clearing their
throat or mopping up the saliva.
MND does not directly affect the muscles that help us to go to the toilet, but
some people with MND may experience problems. For example if a person
has trouble with their mobility, it might be more difficult for them to get to the
toilet in time.
Other people may find that they become constipated (difficulty in going to the
toilet) because they are not moving around as much as they used to so they
become ‘bunged up’. People with MND should not be tempted to drink less to
avoid trips to the toilet, as this may make constipation worse.
Are there any treatments for MND?
Although there is no cure for MND, there are ways of controlling symptoms
that can make people feel more comfortable. These treatments will depend on
each individual with MND and their symptoms. For example, there are drugs
that can help with saliva problems, constipation, pain etc.
Some people with MND try complementary treatments or therapies, for
example aromatherapy or acupuncture. These treatments will not cure MND
or slow down the disease, but they can help people feel more relaxed. Some
people say they help ease some pains they might have.
Some people with MND are prescribed a drug called riluzole (brand name
Rilutek) by their doctor. Riluzole is a drug that is taken every day and can
slow down the progression of MND a little. This means that, although the
disease cannot be cured, the rate at which people are affected by symptoms
is slowed down.
Does it hurt?
Many people who have MND do not have any pain for most of the time.
Some people who have MND may have pains in their legs or arms caused by
cramps. Other people can have other pains because the muscles become
weaker and they might not be able to get into a comfortable position when
they are sitting in a chair or lying in bed, for example.
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There are many things that can help. A doctor can prescribe medication to
help control the pain. Some people find that complementary therapies such as
massage help relieve their pain.
Who might be involved?
When someone is diagnosed with MND, many people can help. This section
explains who these people are and what they can do.
What do the specialist doctors do?
People with MND will usually see a neurologist; a doctor who specialises in
diseases that affect the brain and nerves. The neurologist is often the person
who makes the diagnosis of MND.
Depending on which symptoms someone has, they might see other specialist
doctors. For example, if someone is having trouble with their breathing, they
might see a doctor called a ‘respiratory physician’. This is someone who
specialises in the respiratory (breathing) system.
As the disease progresses, many people with MND will have an appointment
with a palliative care doctor. A palliative care doctor specialises in helping
people who have diseases that can’t be cured.
Palliative care doctors work as part of a team to make sure that someone with
MND is as comfortable as possible throughout their disease. Palliative care
teams often work from a hospice.
What do hospices do?
Hospices help people who have diseases that can’t be cured. They have
specialist palliative care doctors and nurses who care for people with
diseases like MND and some types of cancer.
The doctors and nurses in hospices can help control the symptoms of MND.
They can answer questions people have about the illness and about what
might happen in the future. They can make sure that people with MND are as
comfortable as possible and minimise any pain they may have.
Some people associate hospices as a place where people go to die, so may
be quite frightened of going to a hospice. People do sometimes choose to go
to a hospice to live for the final few days of their life.
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Hospices do many things to help people with MND and they are not just a
place where people go to die. They are very positive places where people can
access many different services to help them live independently and enjoy life.
“Gramps and Nana thought the hospice was great. Gramps used to go and
they’d cut his hair and trim his moustache – it gave Nana a break for the day.”
Some hospices offer ‘day therapy’ where people can spend the day at the
hospice doing things they enjoy. For example, some people take part in arts
and crafts activities; other people enjoy spending time in the gardens.
Some hospices also offer ‘respite breaks’. This means that the person with
MND goes to stay in the hospice for a few days so that their family or carers
can have a break from looking after the person. This can give them a chance
to do some of the things they wouldn’t normally do, for example go on holiday
or see friends; or it can just be a time when everyone can have a rest and
‘recharge their batteries’.
Caring for someone with MND can be tiring and stressful at times and no one
should feel guilty about needing a break for a few days. Some people with
MND stay at other places for a respite break, such as a nursing home or a
specialist centre instead of a hospice.
Respite breaks can also take place in the person’s own home (hospice staff
stay with the person at home and care for them) this also gives the family a
break.
Many hospices offer complementary therapies such as massage or
aromatherapy. It is generally thought that relaxation can help to
reduce anxiety and stress, which can be brought on by many of the
problems associated with everyday living for people with MND and
their carers.
“My dad used to go into the hospice every week. He did lots of paintings and
they helped him paint even when his arms got really weak. I still have one of
his pictures in my bedroom. I like looking at it before I go to sleep.”
People with MND may want to talk to someone about the disease and about
how they are feeling. Some hospices employ ‘counsellors’ who are trained to
listen and help people make sense of their feelings.
Counsellors will also work with people affected by MND, for example
relatives of the person with MND. Some people find it easier to talk to
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someone outside of their family, especially if they want to talk about the
things that are worrying them.
“I used to go see Marilyn at the hospice. She’d listen to how I was feeling and
I could tell her things ‘cos I knew she wouldn’t get upset or tell anyone else.”
Not all counsellors work from a hospice. GPs can also refer people to
counsellors, or sometimes the MND Association can help people find
someone to talk to.
Who are all the people who come to visit the house?
Sometimes the person with MND will have appointments with health
professionals such as doctors or nurses at a hospital, but often health
professionals will visit the person with MND in their home.
It can be confusing having so many different health professionals coming to
the house, but all these people have a different job and can help in different
ways.
“My mum used to say she would start charging for all the cups of tea she
made for people. We never had any clean cups by the end of the day.”
The following table gives an idea of some of the people who might be involved
in the care of someone with MND but remember; MND affects everyone
differently, so not all these people will be involved:
Job title
Physiotherapist (physio)
Occupational therapist
(OT)
Doctor (GP)
Speech and language
therapist (SaLT)
How they can help
Gives advice and/or therapy on mobility for
example, walking, climbing stairs, balance etc.
Can also provide equipment such as walking
frames, wheelchairs etc
Gives advice on everyday activities e.g.
washing, using cutlery, using the toilet etc)
Can provide equipment to help. For example,
aids to help with bathing for example. OT’s can
also give advice on how to make adaptations
to the house to make it easier for the person
with MND, for example by installing a stair lift
Can prescribe medication to help with
symptoms and can refer to other services
when needed
Helps people with speaking and
communication problems. They also provide
equipment to aid communication such as
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Dietitian
Care manager
Social worker
District nurse (DN)
Palliative care nurses
Carers
Counsellors
computers or ‘lightwriters’. SaLTs can also
give advice on swallowing food and drinks
Can make sure a person is getting the right
sort of food and drink and can give advice if a
person starts to lose weight or doesn’t want to
eat
Can give advice on what practical help is
available and organise help with personal care
such as washing and getting dressed
Can give support to the whole family by
helping with things such as housing and
benefits and can make sure everyone is
getting the support they need
Works with the GP and can visit a person at
home to help with any nursing needs such as
taking medication
Palliative care nurses are specially trained to
care for people who have an illness that
cannot be cured
Help a person with MND with different tasks,
for example helping them to get washed and
dressed or to help them prepare for bed
Can listen and help people make sense of
their thoughts and feelings. Counsellors can
work with all family members, not just the
person with MND.
What equipment does someone with MND need?
Everyone who has MND is different and not everyone needs the same
equipment. The type of equipment a person needs depends on which
muscles are affected.
Walking and mobility
If someone has problems with their legs, they may need help to get around.
For example, help getting up the stairs, so a stair lift may be fitted in their
house.
Some people might start to use a walking stick or a walking frame, but as the
disease progresses, they might need to use a wheelchair. Not everyone with
MND needs to use a wheelchair and some people might use one when they
are feeling particularly tired (fatigued) or when they go out of the house, for
example to go shopping.
There are many different types of wheelchair and electric scooters available
and a physiotherapist can advise on the best type available.
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“I hated all the equipment at first. Every time the doorbell rang it was someone
else with something for the house. You get used to it after a while though.”
When MND affects a person’s leg muscles, they can become so weak that
they are unable to stand up at all. When this happens, people often use a hoist
to help them move from one place to another, for example from a bed to a
chair, or onto the toilet. There are different types of hoist, some are attached
to the ceiling and others can be folded away when not in use.
“He hated the hoist, it never looked safe, but the carers couldn’t lift him
without it.”
If someone has problems using their arms or hands they may need equipment
to help them do tasks such as opening doors, getting dressed or feeding
themselves. There are many different aids and equipment available to help
people stay as independent as possible.
“My mum sewed Velcro onto my dad’s shirts so that he didn’t have to do the
buttons up; he liked it because he still looked smart.”
Sometimes changes need to be made to the house to make it easier for a
person with MND to continue to live there. This might involve changing the
bathroom to fit a shower or wetroom, if a person has trouble getting in or out
of the bath, or installing a lift so that a person can get upstairs.
Some people with MND decide that they need to move their bedroom
downstairs, especially if they cannot manage to get up and down stairs easily.
This can mean that the house has to be rearranged and people can find these
disruptions difficult.
“Gramps had his bed downstairs, which meant they had to move the dining
table so we had to eat off our knees when we visited.”
Speaking and communication
If the muscles in the throat are affected, it can be difficult to talk. There is a
wide range of different types of equipment to help someone communicate.
Some people use a computer with voice software; other people prefer to write
things down. The MND Association may be able to help to provide
communication aids and equipment such as computer software or a
‘lightwriter’. A lightwriter is a small machine that some people with MND use.
The person types a message and the machine ‘speaks’ the words.
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It’s important to remember the person with MND can still hear and
understand you, even if they find it difficult to speak. You might have to ask
them to repeat something they have said if you do not understand. This can
be frustrating for you and for the person with MND, but remember, the
person is frustrated with MND, not with you.
If someone cannot speak, they can still listen! Even if the conversation is one
sided you can always tell them the latest gossip from school, college or work.
Always try to work out what the person is trying to say, rather than pretending
to understand or ignoring them.
“I used to get embarrassed if I didn’t understand and pretend I did. Now I wish
I’d tried a bit harder.”
“I could understand my mum even when other people couldn’t. Sometimes
we’d just look at each other and I’d know what she was thinking. Then we’d
start giggling.”
Eating and drinking
Some people with MND find it difficult to eat and drink. This can be for two
reasons.
Firstly, some people find the ‘mechanics’ of feeding themselves difficult. For
example, if a person’s hands or arms are affected they may find it difficult to
hold cutlery or bring their hand up to their mouth.
Many aids can help with this. For example, some people use knives and forks
that have a wider handle that they can grip more easily. Other people can use
a support on their arm to make it easier to feed themselves.
Secondly, if the muscles in the mouth and throat are affected then someone
might find it harder to chew and swallow food. These muscles are called the
‘bulbar’ muscles. When these muscles are affected, some people might need
to change the consistency of foods they eat, for example, eating softer or
liquidised foods.
Some people can also find it difficult to swallow liquids, for example water or
tea and coffee. A speech and language therapist (SaLT) can prescribe a
powder that makes liquids thicker and so easier to swallow.
“My dad had trouble drinking tea and coffee so mum used this thickening
powder – he said coffee was ok but tea tasted horrible!”
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Often, when the bulbar muscles are affected, a person will start to lose weight,
as they are not eating enough food to get the nutrients they need. When this
happens, a dietician can prescribe drinks that have lots of nutrients in them so
that the person with MND does not have to eat lots of food.
Eventually, some people find that they have difficulty eating or drinking very
much at all. When this happens, they might choose to have an operation to
put a tube into their stomach. This operation is called a gastrostomy.
The tube is inserted directly into the stomach through the skin of the
abdominal (tummy) wall. The feeding tube may also be put in place before
absolutely necessary so that the person can get used to it. They can then start
to have the main part of their diet as liquid food, as well as still eating or
drinking those things they really enjoy.
Feeding tubes are not painful and normally cannot be seen when wearing
clothes. When not in use, they can simply be taped to the stomach to prevent
them from moving around under clothing.
People often refer to this operation and tube as a ‘PEG’ or a ‘RIG’. PEG and
RIG are medical terms for the way that the tube is inserted; they both work in
the same way.
“I used to help with mum’s feed. I’d use the syringe to pump the feed into the
tube. We’d joke that it was roast beef and Yorkshire pudding or steak and
chips going in.”
Breathing
If the muscles in the chest are affected by MND, then a person might start to
have difficulty breathing. This might mean that they get out of breath more
easily when walking, for example. Other people might find it difficult to sleep
as they find they can’t get their breath when lying flat.
A specialist doctor or nurse can do tests to check how well a person is
breathing. Some people will be offered a machine to help them breathe by
pushing air into the lungs via a mask that is worn over the nose and mouth.
This is called ‘non invasive ventilation’; you might hear it being called NIV or
Nippy for short.
NIV isn’t suitable for everyone, but there is a range of medication that can be
given to relieve the symptoms of breathlessness. This medication can also
alleviate feelings of fear and anxiety someone may have.
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The machine does not always need to be used all the time; some people just
wear the mask overnight or for a few hours during the day. Some people
might need to wear it for longer periods, especially if their breathing gets
worse over time.
“Mum used a Nippy to help her breathe at night but it rubbed her face and
made it sore. She hated it.”
“Gramps used the mask at night, it helped him sleep and he didn’t feel so tired
in the day.”
A nurse, physiotherapist or OT can advise on simple techniques that can
help maximise breathing whilst the person with MND is waiting for a
respiratory assessment.
Continue to next section…
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MND and me
When someone is diagnosed with MND, the whole family is affected. Different
people will react in different ways to the diagnosis and there is no right or
wrong way to react.
Often, things have to change when someone gets MND. For example, the
person might not be able to do some of the things they did before.
You might find that you have to help with extra jobs at home, or you might not
be able to do the same activities with the person as you did before.
These changes can make you feel lots of different emotions and you might be
worried that you are not acting in the ‘right way’. Try to remember that the
person with MND is still the same inside, even if they cannot do the same
things they used to. They will still feel the same way about you as they did
before they got MND.
There is no ‘right’ or ‘wrong’ way to feel. The most important thing is that you
talk through your feelings with someone you trust.
“I felt different to all of my class mates. They were busy gossiping and crying
about boys and I had MND to deal with.”
How should I feel?
When someone close to you has MND, the chances are that you will
experience lots of emotions at different times. There is no ‘right’ way to feel
and it is likely that you will experience lots of different emotions.
You may feel ‘angry’, ‘bad’ ‘selfish’ or even ‘guilty’ about some of the feelings
you have. These feelings are really normal.
As well as the feelings you are experiencing about MND, you will also be
going through all the everyday worries as your friends, such as getting
homework done on time, falling out and making up with friends at school,
relationships, or studying for exams.
Things might feel tenser at home, as everyone comes to terms with the
diagnosis.
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“It was a weird time, I didn’t feel like a child because I was doing all this stuff to
help care for her, and then the next minute my mum and dad would say I was
too young to understand and not tell me things. I think they were trying to
protect me, but it was really frustrating and I’d get really angry.”
Everyone deals with emotions in different ways. This is completely
natural as everyone is different.
Angry
It is normal to feel angry with MND. You might feel angry that the person you
are close to has the disease, or you might be angry with other people if they
don’t understand how you feel.
“I used to get really angry at all the health professionals who came to the
house – I just thought they weren’t doing enough to help, but really I was
angry at the fact that they couldn’t cure my mum.”
“Sometimes I just wish I had my old life back, before everything changed.”
Helpless
You might feel like there is nothing you can do to change things or to help.
Sometimes adults try to ‘protect’ young people by not telling them everything
or ‘shielding’ them from certain things.
“We used to go round to see them and just sit there because Gramps couldn’t
really do anything and I couldn’t think of what to say or do so I’d get really sad,
which would make Gramps sad as well so then I felt guilty.”
There may be practical things you can do to help the person with MND. For
example, if they are having difficulty speaking you might be able to teach
them to communicate using text or email.
Embarrassed
Many young people feel embarrassed by adults some of the time, by the way
they talk or the things they do. Some of the symptoms that someone with
MND has can make you feel embarrassed.
“My mum embarrasses me all the time, especially when she dances; and she
doesn’t even have MND!”
18
“At first I was embarrassed when she started dribbling and all this spit was
coming out of her mouth, but after a while I got used to it and would wipe her
face and make sure she had tissues ready.”
For example if someone is having difficulty speaking, they might slur their
words and you might feel that other people will think they are drunk. You
might feel embarrassed or uncomfortable if the person with MND uses a
wheelchair.
“I had parents evening and mum turned up last; she looked drunk. She was
unsteady on her feet and slurring her words. I remember being really
embarrassed and then feeling so awful for feeling embarrassed”.
It is normal to not want to be different from your friends and you might feel
uncomfortable being around the person with MND.
“I was worried about bringing friends home because of all the equipment
and I didn’t want to have to explain what it was all for. We had this special
toilet and stuff in the bathroom and it was really embarrassing thinking of
my dad having to use it.”
Worried
Everyone worries about some things and it is normal to worry about the future.
Knowing someone who has MND can mean that you worry about what might
happen to them in the future and how that will impact on your life.
It is not selfish to think about how MND is making an impact on your life.
Acknowledging your worries and fears can make them easier to deal with.
“I worried about how my mum would be after dad was gone. I think I was
more worried about her than about me.”
“I was worried about how he might die and whether I would be there when it
happened. I wanted him to die in his sleep so that he would be comfortable.
He wanted to die at home but I was worried about who would find him if he did
die.”
Envious
You might feel envious (jealous) of your friends because they don’t have to
deal with MND. Things might have changed at home after the diagnosis of
MND and you might feel that you can’t do the things that your friends do
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because you have to extra jobs at home or the person with MND needs you to
help them.
“Sometimes I’d look at my friends and think ‘you’re so lucky so don’t have to
deal with this’. And sometimes my friends would whinge about something their
mum had made them do or something and I’d think ’At least your mum isn’t
going to die’. But you can’t say that.”
Sometimes plans have to change at short notice and this can be frustrating if
you were looking forward to doing something special.
“I remember we were supposed to be going to Chessington World of
Adventures, but dad was too tired so we couldn’t go. I stormed up to my room
and slammed the door and then mum came in, we had this big row, and then
she started crying and said it wasn’t all about me. Then I started crying and I
remember thinking how unfair it was. I look back now and think I was a
complete brat, but it was so frustrating at the time.”
Guilty
Sometimes you might feel guilty. This could be because you have felt angry or
embarrassed by the person with MND and then afterwards you felt bad. You
might feel guilty if you go out with your friends or have fun.
“I felt guilty if I didn’t go visit Gramps every week. I wanted to see my friends
but we used to go every Saturday afternoon for tea. I just wanted a normal life
with my friends.”
You can’t think about MND all the time. It’s good to spend time with your
friends. The person who has MND would not want you to miss out on things
or only think about MND.
“It is important to do normal stuff like hang out with your friends; otherwise it is
not a normal life.”
Dealing with MND can make you have lots of different emotions. All of
these emotions are normal and it is only natural to feel angry, worried,
guilty or jealous of your friends.
Telling friends
You might find it easy to talk to your close friends about what is happening, or
you might find it difficult to open up about how you are feeling.
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“My friends had never heard of MND so I had to explain it all to them, which
made me upset.”
“My friends are all really nice most of the time, but I think they get fed up when
I can’t do something because I’m needed at home.”
Sometimes, talking things through with a friend who is supportive can be
helpful, but sometimes you might want to talk about other things that aren’t
connected to MND.
“I would tell my close friends, but not the whole school. My close friends
understand.”
You shouldn’t feel guilty about thinking about other things. The person who
has MND would not expect you to only think about the disease.
“Sometimes I say I’m fine when I’m not, but I don’t want to talk about it all the
time.”
“You have to do normal things with your friends to make you feel normal.”
You might feel embarrassed about the way the person who has MND is
affected. Some people find it difficult to come to terms with things like seeing
the person you are close to in a wheelchair or finding it difficult to speak.
You might feel that you don’t want to invite friends to your house if there is lots
of specialist equipment around.
Most people find that they get used to the ways that MND affects people and
they become less embarrassed about things. Most friends are very
understanding about what is going on.
What can I do to help?
It is natural to feel helpless sometimes, but there are things that you might be
able to do to help.
Talk to the person who has MND, or other adults and tell them how you feel
and ask how you might be able to help. Sometimes simply acknowledging
how you feel can help the person with MND.
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There may be practical things you can do, for example helping the person
with MND to prepare meals or do the shopping. It could be helpful if you took
on extra jobs around the house or made sure that you tidy up your stuff so
that the person with MND is less likely to trip over things.
“I enjoyed helping – it made me feel useful. I came home from school and
would make tea and then clear up afterwards. I’d also help mum get up in the
morning and get dressed. In some ways it brought us closer together.”
You might find that you have more responsibilities because of MND. Some
young people may have to help care for someone with MND, for example
helping them get up in the morning, and get washed and dressed.
“At first nothing much changed, but gradually I had to help out more and
more.”
Sometimes you might feel resentful that you have to take on these extra
responsibilities or tasks or angry at the person with MND because they can’t
do the things they used to do. At other times, you may find that you enjoy
helping the person with MND and feel much closer relationship to them.
“I felt like I grew up really quickly. I’d cook tea for me and my brother and look
after him.”
Coping
When someone close to you has MND, it affects the whole family. Everyone
will cope in their own way and some days it might feel easier to cope than
others.
If your mum, dad or grandparent is the person with MND and you live with
them, you might notice life at home has changed. You may feel nothing is the
same anymore.
“Sometimes we’d do really cool stuff ‘just because’. Like once we didn’t have
to go to school and we all went for a tour of Wembley stadium. That’s a really
good memory.”
“Sometimes we’d have to cancel stuff because dad had an appointment or
was really tired. My mum had this massive calendar on the wall with all the
appointments in it.”
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If you live with the person with MND, you may find that money is tighter than it
was before the person got MND. Many families’ will experience money
problems at some point, even when no one has MND in their family.
“Money was a bit tight because dad wasn’t working and I’d feel guilty asking
for money for stuff, but I wasn’t allowed to get a Saturday job because I was
needed at home. It was horrible not having the same things my friends had,
but I would never have asked for expensive presents.”
Coping with some of these changes might be really difficult for you in the
beginning, but you will learn to adapt and cope with those changes.
Try to find time to do the everyday things you used to do before the person
was diagnosed with MND. Talking about your feelings can make it easier to
deal with them and sometimes, someone might come up with an idea to help
that you hadn’t thought of.
“I felt guilty if I left mum to go out with my friends, but she liked hearing what
we’d been doing and all the gossip.”
Some people find that they have trouble keeping up with school work because
of things that are happening at home or because they are worried and find it
Sometimes you might feel like it is all too much and you can’t cope with all the
changes that are happening. It can be very overwhelming to try to deal with
MND. Try to talk about your feelings with someone you trust, for example your
mum or dad, a teacher at school or another adult you find it easy to talk to.
“Sometimes we’d have these arguments and I’d slam the door and go out. I
was sick of being told that I had to be a ‘grown up’. I just wanted to be like all
my friends. Sometimes I just felt like it was all too much.”
“You are supposed to tell your form teacher stuff, but I don’t like him so I talk
to the science teacher instead and she is really understanding.”
You might feel that you want to talk to someone outside of your family.
Counsellors are people who are trained to listen and help you work through
your worries.
Your GP can refer you to a counsellor if you think it would be useful to talk
things through. Alternatively, if the person with MND is linked to their local
hospice, you may be able to talk to a counsellor there.
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Many areas have ‘young carers’ groups where people like you who help look
after someone who is ill, can get together. These groups often have activities
that you can join in with. They organise trips to fun places like theme parks or
leisure centres in the holidays and employ people who can give you more
help and support. Look on the internet for your local group.
“I didn’t think of myself as a carer – I just did what had to be done. I didn’t
really have a choice.”
There are also telephone and email helpline services, if you don’t want to talk
to someone face to face. You can find out more information about other
organisations that can help, at the end of this book.
“I didn’t cry in front of him because I thought I should be strong, but
sometimes I’d go to my room and cry and cry. On the chat site, I talk to other
young people online. It helps knowing other people are going through similar
things and feel the same way.”
Are there any positive things about MND?
Although MND is a very difficult disease to cope with there can be some
positive things that can happen.
You might find that you can spend more time with the person who has MND
than you did before. For example if it is your parent who has MND they might
have to stop or cut down the hours they work and so you will have more time
at home with them.
“I used to do my mum’s hair and nails. We spent a lot of time together, just the
two of us. I’d paint her toe nails in multi-colours and we laughed a lot. Before
she was ill she never had time to do silly things.”
Many young people say that they become closer to the person with MND than
before and appreciate the time they have together.
“The thing that helped the most was to spend as much time as I could with my
dad and build some very special memories with him to last a lifetime.”
You might find that you learn new skills such as cooking and learn to take on
extra responsibility than your friends. This can mean you become more
confident and independent.
24
There might be lots of times when you will find it difficult to be positive, but
remember that there are lots of people and organisations that can help you
through these difficult times.
“I did a parachute jump for charity last year, for MND and the local hospice. It
taught me that you can do something positive when the situation seems as
bad as it can get.”
“If MND has taught me anything it is firstly that it is fine to laugh at the things
you laughed at before. And secondly, any achievement, no matter how big or
small, you know they’d be proud of you.”
Collecting memories
Collecting memories is something lots of people do, whether someone close
to us is ill or not. It’s a lovely way of remembering happy times or occasions
from the past.
You could collect photos, old tickets or postcards and make a scrapbook
showing some of the things you have done together in the past.
Some people make a ‘memory box’ filled with things that remind them of the
people close to them and the things they have done together. This can be as
simple as a shoe box; you don’t have to buy a special container.
If you have already been collecting memories, it can be nice to go through
those with the people close to you, as a way of recalling those happy times
together.
You might also decide to write letters or notes saying how you feel and put
them in the box with photos and other mementos.
“I have a memory box and shelves in my bedroom with photographs and
keepsakes. It is important to keep things.”
What will happen in the future?
There is no cure for MND, so the person won’t get better, but it is very difficult
to predict how the MND will progress as everyone is different. This uncertainty
can be hard to deal with.
25
As the disease progresses the person will find it more and more difficult to do
things for themselves and you might find it upsetting to see them struggle with
things they used to be able to do.
“My mum was bright, strong and funny. Watching her deteriorate was
heartbreaking.”
As people become weaker they might decide to spend some time in a hospice
or they might have to spend some time in hospital. Doctors and nurses will do
everything they can to make the person as comfortable as possible so that
they are not in any pain.
Unfortunately, most people do die from MND and it can be very worrying to
think how this might happen. For most people, this is a very peaceful process
and the person will slowly go to sleep and then their breathing will slow down
and they will slip away peacefully. Doctors can prescribe drugs to make sure
that the person is not in any distress when this happens.
“I had read that people choke to death and all these awful things. It wasn’t
anything like that. Mum fell into a sleep or sort of coma, I sat with her and her
breathing became slower and fewer. Then she was gone.”
When someone dies
When someone dies, it can make you feel really sad. At first, you might spend
a lot of time crying and may find it all quite overwhelming. This is all part of the
grieving process.
Some people feel a little bit relieved when someone dies. This is natural and
you shouldn’t feel guilty for these thoughts.
“When Gramps died a bit of me was relieved. Partly because I knew that he
was at peace, but partly because I thought things would get back to normal.”
People react in different ways when someone dies. Some people find it
difficult to show their emotions and ‘bottle things up’. There is no right or
wrong way to act, but it is usually better to find someone to talk to about how
you feel if you can.
“When dad died my mum wanted to get all the equipment out of the house as
soon as possible. It made me feel like she was trying to get rid of him.”
26
There are many organisations that can give you support when someone dies.
Some of them are listed at the end of this book. You might want to talk to your
friends about how you’re feeling, or to a member of your family.
“The worst thing is when people ask about my mum and I say that she died.
People then either feel really awkward or feel sorry for you.”
Some people find it difficult to talk about the person who has died, especially
in the beginning, but as time passes this will become easier.
Eventually you will be able to look back and think about the person who has
died without getting too upset. You will be able to reflect on some of the happy
times you spent together and fun things you did together.
“Remembering the good times makes me feel more happy.”
Funerals
Young people should be given the choice about whether they attend a family
funeral or cremation, unless there are particular religious, cultural or other
family reasons not to.
Some young people will take comfort from attending the funeral as it can help
them understand the finality of death. It can also be an opportunity to come
together with family and friends to say goodbye.
Some young people may find it all just too overwhelming and decide they
can’t face the thought of attending the funeral. If someone feels that way, it
isn’t being disrespectful to the person who has died. Everyone reacts and
copes differently.
Whether you decide to attend the funeral or not, there are likely to be
opportunities for you to be involved in some way or another. For example,
being involved in planning the funeral arrangements, writing something that
can be read out during the service, or putting something in the coffin.
“I made a card and letter to go in her coffin. I’m glad I did it, happy because it
feels like it will always be with her.”
You might want to talk to your friends about how you’re feeling, or to a
member of your family, or someone else you trust.
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MND Connect is the MND Association’s advice, support and information
service, with a confidential telephone and email service for young people.
Details are given in the next section, Getting support:
Getting support
How can the MND Association help?
You may feel a mixture of emotions after reading this book.
Please remember that all of those feelings are perfectly normal. The
most important thing to remember is that support is available for you.
MND Connect is the MND Association’s advice, support and information
service. Opening hours are Monday to Friday from 9am until 5pm, then 7pm
until 10.30pm.
We have a confidential telephone and email service for young people.
MND Connect Telephone: 08457 626262
Email: [email protected]
Who else can help?
Childline is the UK's free, 24-hour helpline for children in distress or danger.
www.childline.org.uk
Cruse Bereavement Care exists to promote the well-being of bereaved
people and to enable anyone bereaved by death to understand their grief and
cope with their loss.
www.cruse.org.uk
PRTC – Young Carers The Princess Royal Trust for Carers - Young Carers
provides a wealth of information, advice and support for young carers.
www.youngcarers.net
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StartHere information service is a self-help facility linking to a wide range of
services that can help when children and young people have a problem.
www.starthere.info/getconnected01/welcomegetconnected01.htm
Teachernet can provide useful information on how teachers can offer support
to children in schools.
http://www.teachernet.gov.uk/teachingandlearning/library/youngcarersands
chools/t%20eachersandschools/
The Child Bereavement Charity (CBC) provides specialised support,
information and training to all those affected when a baby or child dies, or
when a child is bereaved. The CBC website includes an online directory of
local and national ‘open access’ services.
The services in the Directory can be contacted for information, guidance and
support by anyone caring for or working with a bereaved child or young
person in the UK and, in most instances, by the bereaved child themselves.
www.childbereavement.org.uk/about_us
The Children’s Society – Young Carers Initiative You can find out more
about your local young carers group.
www.youngcarer.com
Winston’s Wish
Winston's Wish is the leading childhood bereavement charity and the largest
provider of services to bereaved children, young people and their families in
the UK.
Winston’s Wish helps children rebuild their lives after the death of a parent or
sibling, enabling them to face the future with hope. The website includes a
wealth of useful information for professionals working with young people, and
a section for parents. There is also an interactive area for children and young
people.
www.winstonswish.org.uk
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Glossary
Here is a list of some of the terms used in this book – and an explanation of
what they mean.
Bulbar muscles
Cognitive change
Counsellor
Diagnosis
Emotional lability
Fatigue
Gastrostomy PEG/RIG
Hospice
Incidence
Lightwriter
Neurologist
Neurone
NIV NIPPY
Prevalence
Progressive
Respiratory muscles
Symptom
Terminal
The muscles in the mouth and throat that help
us to chew, swallow and speak
Changes to the range of brain functions that
include the ability to think through and plan
activities, to concentrate and carry out more
complex tasks, and to interact and respond
appropriately to other people
Someone who is trained to listen to someone
talk about their feelings and help them find
solutions to problems
When a doctor says what is wrong with
someone who is ill
A symptom of MND that causes people to laugh
or cry for no reason
Tiredness
An operation to put a feeding tube into the
stomach
Type of hospital for people who have a disease
that cannot be cured
The number of people likely to get a disease
A machine to help people to communicate
when they have difficulty in speaking. A person
can type a message into the machine and it will
‘speak’ the words
A doctor who specialises in disease that affect
the brain and nerves
Nerve
Non invasive ventilation; a machine that helps
people breathe when their respiratory muscles
are weak
The number of people who have a disease at a
particular time
An illness or disease that gets worse over a
period of time
The muscles that help us to breathe
A feeling or physical change that is caused by
an illness or disease
An illness or disease that cannot be cured
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Acknowledgements
With special thanks to all of the young people affected by MND who
contributed to the development of this book.
We would especially like to thank Holly, Jane, Robert, Dom, Emma, Katie,
Lois and Cavan for all their input.
Last revised: 03/11
Next review: 03/13
Version:
1
Motor Neurone Disease Association
PO Box 246, Northampton, NN1 2PR
Tel: 01604 250505
www.mndassociation.org
Registered charity No. 294354
© MND Association
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What do you think?
We would really like you to tell us what you think of the book So what is MND anyway? to help us
revise and develop this information for the benefit of others affected by MND. You can send this
page back to us as a printed questionnaire (to the address shown at the bottom) or if you prefer,
you can fill this form in online at: www.surveymonkey.com/s/SowhatisMNDanyway
1.
Which of the following best describes your interest in this information?
I’m living with MND
I’m close to someone with MND
I’m a carer for someone with MND
I’m a health and social care professional for people with MND
2.
Do you think the information is clear and at the right level for young people?
Ideal
3.
Quite difficult
Very difficult
Is it easy to find the section you need in the content?
Easy
4.
Okay
Quite easy
Quite difficult
Very difficult
Did you find the information useful?
Very useful
Quite useful
Of no use
5.
Do you feel this information will help to provide you or other young people with any
of the following? (tick all that apply)
more ideas on how to help the person with MND
an awareness that no-one is to blame for MND or its effects
more confidence about situations caused by the disease
ways to cope with the emotional impact of being close to someone with MND
a greater ability to maintain the relationship with the person who has MND
6.
Is there any aspect you would like covered in more detail?
7.
Do you have any other comments or suggestions?
(please print this page and continue overleaf if needed)
Thank you
Please return your completed form to:
Care Information, MND Association, FREEPOST NH4 173, Northampton, NN1 2BR
If you are happy for us to contact you regarding your responses, please provide your name and contact
number below:
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