Parkinsons 7/12/00 11:57 am Page 1

P arkinson’s disease
and Parkinsonism

£2.00 (free to people affected by neurological disorders, their relatives and carers)

ISBN 1 901893 06 5
Parkinsons 7/12/00 11:57 am Page 3

Parkinson’s disease and Parkinsonism Contents

A guide for patients and carers
Published by the British Brain and Spine Foundation Page
©British Brain and Spine Foundation 1998
ISBN 1 901893 06 5 Acknowledgements 2
British Library of Cataloguing in Publication Data Introduction 2
A catalogue record for this book is available from the British Library
What is Parkinson’s disease? 3
Editor, BBSF Neurological Disorders Series: M Alexander CBiol MIBiol
Medical illustrations: Philip Wilson FMAA AIMI Who gets Parkinson’s disease? 4
Cover design: Carter Wong and Partners
Print: Clifford Martin Press What causes Parkinson’s disease? 5
What happens inside the brain of people with Parkinson’s disease? 6
British Brain and Spine Foundation
Are there different types of Parkinson’s disease? 8
The British Brain and Spine Foundation was launched in 1992 with the aim of
improving prevention, treatment and care of disorders of the brain and spine. How is the diagnosis made? 12

By funding medical research and developing national education programmes, Signs and symptoms 13
the British Brain and Spine Foundation is working to increase the knowledge
and understanding of neurological disorders throughout the medical world and Drugs used to treat Parkinson’s disease 18
general public alike.
Surgery for Parkinson’s disease 23
Who can help me? 25
What about the future? 28
British Brain and Spine Foundation
7 Winchester House Glossary 30
Kennington Park
Cranmer Road Other organisations that may be able to help 32
London SW9 6EJ
Telephone: 0171 582 8917
Fax: 0171 582 8712
E-mail: info@bbsf.org.uk
Website: http://www.bbsf.org.uk
Registered charity no.1010067
Parkinsons 7/12/00 11:57 am Page 2

Acknowledgements What is Parkinson’s disease?

The British Brain and Spine Foundation would like to thank Sarah
Preston, Parkinson’s disease Nurse Specialist for Ealing, Hammersmith
and Hounslow Health Authority, who has written this booklet; and David
Brooks, Hartnett Professor of Neurology and Head of the Neuroscience
Group, Imperial School of Medicine, Hammersmith Hospital, for his
invaluable assistance with this project.
Parkinson’s disease is a chronic, progressive neurological disorder, which is
characterised by damage to an area of the brain called the substantia nigra.
This area influences all voluntary movements. Nobody truly understands
what causes this damage, and no cure has yet been found for the disease, but
the symptoms can be controlled using a combination of drugs, therapies and
occasionally surgery.

British Brain and Spine Foundation, 1998

Introduction
This booklet is intended to provide some general information about Parkinson’s
disease and Parkinsonism. It has been written to answer some of the questions
often asked by patients, as well as their families and carers.

However, because these conditions affect each person differently, it is

important that you speak to your own GP or to the doctor or nurse who is
looking after you, since they are in a position to offer advice and information to
meet your own specific needs.

Note: Words printed in bold are explained in the glossary on page 30.
Figure 1: Diagram of a section through the head showing the structures in
the brain involved in Parkinson’s disease

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The disease was first described in 1817 by Dr James Parkinson. He wrote his
‘Essay on the Shaking Palsy’ based on his observations of certain people who
passed by his window each day, and using data from his own patients. At that
time the disease was referred to as ‘Paralysis Agitans’, which literally means
‘the shaking paralysis’. Years later, Charcot, a famous French physician, named it
after Dr Parkinson. Dr Parkinson’s early description of the disease remains
remarkably accurate today:
“Involuntary tremulous motion, with lessened muscular power, in parts not in action
and even when supported; with a propensity to bend the trunk forward, and to pass
from a walking to a running pace: the senses and intellect being uninjured”
Where Dr Parkinson got it wrong was in believing that the effects of the
disease were purely physical. In fact, it can slow the mind and impair the
memory in some cases. Its more obvious signs are that it causes people to move
slowly, their limbs feel stiff and they notice a tremor, or trembling, especially
when relaxing. Also they may feel their posture is bent or a little unbalanced.
It must be stressed that every person with Parkinson’s disease reacts differently
and not everyone will necessarily experience all the possible symptoms. For
example, some people may initially only notice a tremor affecting one arm or
leg. Where this is the case, it is likely that the disease will get worse over time
and more of the symptoms will become noticeable. However, this will take
place over years rather than months, and there are medicines to help maintain a
good quality of life.
New medicines and techniques are constantly being developed as researchers
all over the world continue to look for the causes of the disease and search for a
cure. The outlook for people with Parkinson’s disease is much brighter today
than it was 40 years ago - now modern medicine offers realistic hope that the
symptoms of the disease can be controlled.
Who gets Parkinson’s disease?
The disease affects people from all walks of life. On average, it affects one
person in every 1,000 of the population, but for people in their seventies and
eighties that rises to at least two people in every 100. People as young as 20
have developed Parkinson’s disease, but this is uncommon. It is one of the
4 5
most common neurological conditions affecting older people, and over 100,000
people in the UK have the disease at any one time.
Men and women are affected equally, but the disease is more common in
Caucasian people than in people of Asian or African origin. People of different
races tend to develop slightly different symptoms. For example, Caucasian
people are more likely to complain of tremor, whereas people of African-
Caribbean origin describe stiffness as the main problem. Researchers are at
present trying to discover why people from different races experience different
symptoms.
Although common in older people, Parkinson’s disease is sometimes overlooked
by doctors as the signs and symptoms may be wrongly put down to old age.
When this occurs it is unfortunate since the available medicines can help
people of all ages.
What causes Parkinson’s disease?
As has already been said, it is still not known what causes Parkinson’s disease,
but research has led to some theories, which shed at least some light on the
disease.
Recently, scientists have discovered that certain families may be more likely
than others to develop Parkinson’s disease because of an abnormality in their
genes. The main evidence for this comes from research done on a large Italian
family in which many members developed the disease. Tests on their
chromosomes revealed an abnormality in chromosome 4 that could be passed
on to future generations. However, the presence of this genetic abnormality did
not necessarily mean that the disease would develop in all members of the
family. What complicates the picture still further is that this abnormality is not
necessarily present in other families where the disease affects more than one
member, or in isolated cases of the disease. Unfortunately, there is as yet no
test that allows doctors to find out if a person is going to develop the disease or
not.
In the mid 1980’s some intravenous drug users in America were trying to make
a drug called meperidine and accidentally produced a toxic substance called
MPTP, which when injected caused them to rapidly develop the signs and
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symptoms of Parkinson’s disease. This led many people to believe that the
disease is caused by a similar toxin (poison) found in the environment or in
food. Research into this is still going on, but a link has never been proven. If a
toxin is the cause, it is unlikely to be a modern one, since the disease itself has
been around for so long. On the positive side, however, this incident did give
scientists a method of inducing the signs and symptoms of Parkinson’s disease
in the laboratory, which has benefited research into the treatment of the
disorder.
It is likely that Parkinson’s disease is caused by a combination of these factors.
A particular genetic make-up may make a person more likely to get the disease
if they come into contact with certain, as yet unidentified, toxins or
environmental triggers. However, if a person who does not have this genetic
make-up comes into contact with the same toxin or trigger, they could also go
on to develop the disease. In short, particular genetic profiles appear to
increase the chances of developing the disease, but not by a great deal.
Researchers have found no viral or bacterial cause for the disease, so on present
evidence we can say that it is not infectious. It is also not fatal. Severe stress or
anxiety do not cause Parkinson’s disease, but states of severe anxiety,
alcoholism, thyroid disease and a variety of rare metabolic and structural
disorders (see page 11) can mimic some of the signs and symptoms of the
disease. Doctors carry out tests to rule these disorders out before making a
diagnosis of Parkinson’s disease.
What happens inside the brain of people with
Parkinson’s disease?
In people with Parkinson’s disease there is a degeneration of a specific area of
the brain called the substantia nigra. This is a small cluster of cells found
within an area called the basal ganglia deep in the centre of the brain. This
cluster of cells is usually black in colour, but in people with Parkinson’s disease,
this colouring is lost. This can only be seen when doctors examine the brain
tissue after death. Usually, chemicals called neurotransmitters are produced
by this area of the brain. They are responsible for helping to send messages
between cells within the brain and the rest of the nervous system. In people
with Parkinson’s disease there is a substantial reduction in the production of a
chemical messenger called dopamine, which is responsible for helping the
6 7
motor (or movement) coordination centres of the brain (the basal ganglia and
the striatum) work efficiently.
A loss of dopamine in people with Parkinson’s disease means that the brain
circuits that control movement stop working efficiently. Messages sent by the
brain to the muscles do not pass through smoothly, and so ordinary movements
like walking, getting up from a chair and putting on clothes become slow and
difficult.
The end result is the emergence of the typical signs of the disease: slowness,
stiffness and tremor. Doctors tend to refer to slowness of movement as
bradykinesia and slowness in starting movements as akinesia, while the
stiffness is referred to as rigidity. Normally, the ageing process itself causes the
level of dopamine to drop mildly, but in people with Parkinson’s disease around
80 per cent of dopamine has been lost by the time the disease produces
physical signs.
In the brain and nervous system there is normally a balance between dopamine
and another chemical messenger called acetylcholine. In people with
Parkinson’s disease, acetylcholine is relatively more active because of the lack of
dopamine, which creates tremor. This is a simplified explanation of what goes
wrong in the brain. In reality things are more complicated. Many other
chemical messengers are also involved and many pathways within the brain and
nervous system stop working properly.
Figure 2: Diagram showing the balance of dopamine and acetylcholine in the
brain
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Are there different types of Parkinson’s disease?
The answer is no. The Parkinson’s disease for which we know no cause and
have no cure should really be termed Idiopathic Parkinson’s disease. This is
what this booklet has been discussing up until now. However, there is a group
of much rarer diseases or syndromes, which cause the signs and symptoms of
Parkinson’s disease along with other symptoms. Doctors tend to refer to the
condition caused by this group of disorders as Parkinsonism rather than
Parkinson’s disease. When the signs and symptoms of Parkinson’s disease are
caused by drugs this is termed Drug-induced Parkinsonism. There are several
causes of Parkinsonism, and we will look at some of these in a moment. It is
important to understand the difference between Parkinsonism and Idiopathic
Parkinson’s disease - or as we know it, Parkinson’s disease.
Drug-induced Parkinsonism
People who are receiving treatment for psychiatric disorders such as
schizophrenia or severe depression are often prescribed drugs known as
neuroleptics. Over a long period of time, these drugs interfere with the release
of dopamine and so block the sending of messages within the brain. Other
drugs called anti-emetics, which are used to prevent nausea, or vestibular
sedatives, which are used to prevent dizziness, can also interfere with the
release of dopamine and cause Parkinsonism.
Usually, if the drugs are stopped, the signs and symptoms of Parkinsonism
disappear over the course of a few months, but sometimes it is not possible for
the drug to be stopped without the original problem returning. In these cases,
alternative drugs may be available, and you should always discuss the options
with your doctor or specialist. The following table lists some of the common
drugs that can cause Parkinsonism. There are others that only cause tremor as a
side effect, with none of the other symptoms. If you are in any doubt, please
ask your doctor, nurse or pharmacist.
Neuroleptic drugs
Chlorpromazine (Largactil)
Promazine (Sparine)
Trifluoperazine (Stelazine)
Thioridazine (Melleril)
8 9
Some other similar neuroleptic drugs
Flupenthixol (Depixol)
Haloperidol (Serenace)
Droperidol (Dropletan)
Anti-emetic drugs
Prochlorperazine (Stemetil)
Metochlopramide (Maxalon)
Vestibular sedatives
Cinnarizine (Stugeron)
These drugs should be avoided if you already have Parkinson’s disease.
Arterio-sclerotic Parkinsonism
Most of us know how a stroke can leave a person without the power of speech
or the use of a limb. The same mechanism can cause damage to the specific
area of the brain which degenerates in Parkinson’s disease, or to the pathways
the chemical messengers use, or even to the areas where messages are received.
This leads to Parkinsonism. On the whole, this type of Parkinsonism does not
respond as well to drugs and tends to affect the legs rather than the arms. This
is particularly frustrating since the affected person can sometimes sit and
perform quite complex tasks such as knitting, but be unable to walk.
People with this type of Parkinsonism often have other vascular problems due
to narrowing of the arteries. It is usually this that gives the doctor the clue that
a person may be affected by Arterio-sclerotic Parkinsonism.
Post-encephalitic Parkinsonism
Between 1917 and 1926 a virus swept throughout the world, causing an
epidemic of encephalitis. After the affected people recovered from the initial
illness they went on to develop signs and symptoms of Parkinsonism, but with
one unusual feature, which was an uncontrollable rolling up of the eyeballs.
This variety of Parkinsonism is very rare. It can be treated in quite a similar
way to Parkinson’s disease, but it does not respond well to treatment. The film
Awakenings starring Robert De Niro and Robin Williams portrays this type of
Parkinsonism very well.
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Parkinsonism induced by poison
This is the type of Parkinsonism mentioned earlier, which was caused by drugs
being made and then used by intravenous drug users in California in the mid-
1980’s. They accidentally produced the toxin MPTP, and this caused the drug
users to develop Parkinsonism almost overnight. This toxin is not found in our
normal daily lives and therefore this type of Parkinsonism is rare. It responds
well to standard drug treatment. Other poisons that can cause Parkinsonism
include carbon monoxide, manganese and petroleum waste.
Progressive Supranuclear Palsy, Multiple System Atrophy
and other akinetic-rigid syndromes
People who are affected by these types of Parkinsonism tend to be more stiff or
slow in their movements than people who have Parkinson’s disease, but the
signs and symptoms can be very similar. It is more common for people to
develop emotional or memory problems early in the disease, and also speech or
swallowing difficulties. Other signs that sometimes occur in these varieties of
Parkinsonism include: problems with incontinence; severe balance problems;
low blood pressure, leading to fainting; an inability to tolerate changes in
temperature; restless sleep; noisy breathing or snoring; an inability to look
down and a tendency to sigh.
People with these types of Parkinsonism may also develop involuntary jerking
movements rather than tremor, and male patients may also become impotent.
There are subtle differences in each of these types of Parkinsonism because
they are caused by the degeneration of not only the substantia nigra as in
Parkinson’s disease, but also of other clusters of cells and pathways in the brain
as well. Not all the symptoms mentioned above develop in each of these types
of Parkinsonism, and usually the diagnosis can only be made by a specialist.
Other names which you may hear doctors use to describe these varieties of
Parkinsonism are as follows:
• Striatonigral Degeneration
• MSA (Multiple System Atrophy)
• Olivopontocerebellar Atrophy
• Shy Drager Syndrome
10
• PSP (Progressive Supranuclear Palsy)
• Steele Richardson Olszewski Syndrome
• Corticobasal Degeneration
The names refer to either the areas of the brain that are affected or to the
people who first described the disorder. Medicines used for Parkinson’s disease
do not tend to be particularly successful in treating these varieties of
Parkinsonism.
What about head injury?
A single blow to the head is extremely unlikely to cause Parkinsonism, but
repeated concussive injuries can. If you saw Mohammed Ali open the 1996
Olympic Games in Atlanta, you will know that he is affected by the disease. He
may have Parkinson’s disease, or the hundreds of thousands of blows to the
head he took in the ring over the years could have caused Parkinsonism by
injuring the dopamine nerve cells.
Wilson’s disease
This is a metabolic disorder affecting the way the body excretes copper.
Abnormal levels are stored by the body, and this causes damage to the brain,
giving rise to Parkinsonism. The disease is usually seen in young adults rather
than older people. Caught early it can be treated.
Structural problems
Usually the brain is continually bathed and cushioned by fluid called
cerebrospinal fluid, or CSF. Sometimes the drainage system for this fluid can
get blocked, resulting in an increase in pressure in the brain, which can give
rise to Parkinsonism. The symptoms build up slowly and may be mistaken for
Parkinson’s disease in the first instance. Memory problems and incontinence
develop early. These, together with a specific way of walking, will lead the
doctor to suspect the problem. Some of the symptoms can be relieved by an
operation that diverts the fluid through a shunt. Drug treatment is not usually
helpful. In exceptionally rare cases a brain tumour or other lesion can lead to
Parkinsonism.
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How is the diagnosis made?
There is no specific test for Parkinson’s disease or for most forms of
Parkinsonism. Usually the person themselves or a close friend or relative will
notice symptoms developing. They should then visit their GP, who may decide
to refer them to a neurologist or other specialist to confirm the diagnosis. It is
important that this is done since it takes a very trained eye to spot the subtle
differences between Parkinson’s disease and Parkinsonism. After the diagnosis
has been made the treatment can be supervised by the neurologist or specialist,
the GP or a specialist nurse.
The doctor making the examination will ask some questions and will ask you to
perform a number of actions with your face, arms, hands and legs. They will
observe you walking, talking and getting up from a chair, and they may take a
sample of your handwriting. They may test to see how strong you are by pulling
and pushing, and will probably test your reflexes. This, combined with what
you tell them about your symptoms, will help them to make their diagnosis.
The doctor may then go on to send you for other tests, such as a CT scan, an
MRI scan or a blood test. These tests will not prove that you have Parkinson’s
disease, but they will rule out a structural cause (see above) for the symptoms.
They will probably only be done if the doctor is in any way uncertain about the
signs and symptoms and needs more information to confirm their suspicions.
The majority of people are diagnosed using the expert skill and judgement of
the doctor alone. A good response to drugs used to treat Parkinson’s disease will
confirm the diagnosis.
A PET or SPECT scan can be used to confirm the diagnosis of Parkinson’s
disease (see figure 3, page 13). A tiny amount of radioactive dopamine is
injected and this shows what dopamine activity is taking place in the brain.
These scans are not yet widely available and at present they are mainly done
for research. If you live near a research unit you may be invited to participate in
a study.
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Figure 3: PET scan showing dopamine uptake and storage in the brain. The
picture on the left shows a section through the brain of a person with
normal dopamine uptake. The picture on the right is from a person with
Parkinson’s disease and shows reduced dopamine uptake
Signs and symptoms
The main symptoms of Parkinson’s disease were mentioned earlier. They are:
trembling (tremor), stiffness (rigidity), slowness (bradykinesia/akinesia),
problems with posture and problems with balance. In this section we will go
into more depth about each of these symptoms and also touch on some others.
Tremor
This is the commonest problem that leads people to seek medical advice. It
affects around 70 per cent of people with Parkinson’s disease. One hand or leg
alone may shake, or it may even be just the thumb. The shake is most
noticeable when relaxing and usually disappears when sleeping. This symptom
also tends to disappear when the limb is being used, for example while eating a
meal or exercising the hand. Tremor can be very embarrassing to sufferers, but
it is rarely disabling. Sometimes it is not noticeable to others but can be felt
inside. It is very important to note that tremor is not unique to Parkinson’s
disease. There is another condition called Benign Essential Tremor which
also causes the shakes. However, in Benign Essential Tremor the shake is at its
worst when the limb is being used, making this condition very disabling. No
other symptoms of Parkinson’s disease are present in people with Benign
Essential Tremor.
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Rigidity
The doctor may notice rigidity or stiffness when he or she moves your arm
around at the elbow or wrist. This is described as ‘lead-pipe’ rigidity when the
limb is just generally difficult to bend or straighten - as if it were a metal pipe.
Where tremor is also present it is referred to as ‘cog-wheel’ rigidity, as
movement in the joints feels like a ratchet. The latter can be especially
noticeable at the wrist joint. This rigidity may cause the limbs to feel clumsy,
weak or heavy and if severe may result in the affected person losing the use of
one or more limbs.
Slowness
Technically, this is described as ‘akinesia’ or ‘bradykinesia’. These words mean
‘no movement’ and ‘slow movement’ respectively. In real terms the affected
person will notice that they take longer to start and carry out tasks; they will
walk more slowly and without swinging their arms; they may experience
difficulty getting up out of chairs and they will also get tired easily when
carrying out repetitive tasks. In addition to moving slowly, they may have
particular problems with starting or controlling movements. For example, they
may be able to stride out quite well, but find taking the first step very hard.
Problems with posture
People with Parkinson’s disease tend to stoop forwards. They also hold their
arms in a flexed position at the elbows and at the wrists. The knees sometimes
become permanently bent. Because Parkinson’s disease usually affects one side
of the body more than the other, they may lean over to one side. Poor posture
puts stress and strain on different areas of the body, and this leads to pain.
Loss of balance
Poor posture often leads to poor balance. It alters the centre of gravity in the
body, giving the affected person a tendency to fall. Even when standing still
they may have a tendency to stumble forwards or backwards if nudged. When
they try to walk they may find that they are constantly trying to compensate for
this alteration in the centre of gravity. They walk with small, fast shuffling
steps (called festination) and constantly look as if they are about to topple
forwards.
Loss of facial expression
Parkinson’s disease slows all movements, and the muscles of the face are also
affected. A person with Parkinson’s may look depressed or sad; they won’t blink
14
as much as before and they sometimes appear to be staring; they also may not
appear to smile or laugh as readily as before. People who see them every day
may not notice the difference since this all happens so gradually, but
photographs taken five years earlier may be useful in highlighting the change.
Speech problems
Parkinson’s disease can cause the voice to become much softer, and the
affected person may lose their ability to speak to a room full of people.
Sometimes the voice becomes hoarse and the words a little slurred. Often
words seem to tumble out on top of each other much too quickly. Swallowing
becomes slower, and in advanced cases the person cannot deal with their own
saliva. Drooling can become a problem.
Small writing
This is technically termed micrographia. An example is shown below. This is
very common. In many cases it can be shown that Parkinson’s disease has been
developing for many years by the fact that handwriting in diaries or on cheque
book stubs has become progressively smaller. Treatment helps to reverse this
problem.
Figure 4: A sample of small writing (micrographia) produced by a person
with Parkinson’s disease
Bowel and bladder problems
Parkinson’s disease itself causes constipation and the drugs used to treat it can
make the problem worse. It is important to drink plenty of water and eat
enough fibre in your diet. If the problem continues, consult your doctor or
specialist. Passing water can also become problematic. There is a tendency to
pass water more frequently and with a little urgency. Sometimes there is
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difficulty starting the stream. These symptoms usually respond quite well to
drug treatment. Parkinson’s disease does not usually cause incontinence.
Consult your doctor or specialist if you are having problems. For men, the
bladder problems that occur in Parkinson’s disease can sometimes be confused
with prostate problems.
Freezing
This does not refer to temperature, although it does seem common that people
with Parkinson’s disease or Parkinsonism complain of unusually cold hands or
feet. It actually refers to the situation where they stop walking abruptly and
feel as if they were suddenly stuck to the floor with glue. This happens most
frequently in confined spaces e.g. doorways. Getting out of a lift can be a real
problem. Stepping over an imaginary line on the floor or thinking of a marching
tune can sometimes help start up the movement. Different specialists and
therapists have different tips to help overcome this problem.
Night-time/sleep problems
People often have problems with turning over in bed, and night-time visits to
the toilet can be a nuisance. Cramp is common, and people sometimes suffer
from something called ‘Dystonia’, a cramp-like symptom that causes them to
hold themselves or part of their body in an unnatural posture. What this
amounts to is that sleep can often be disrupted. Drug treatment can help, so
discuss these problems with your doctor or specialist. At the other end of the
scale, Parkinson’s disease can cause extreme tiredness and the drugs used to
treat it can make the affected person feel very sleepy.
Greasy skin and sweating
The skin can become very greasy, even in people who previously had a very
good complexion. It is important to pay particular attention to personal hygiene
so that other problems do not develop. Unfortunately, the combination of
Parkinson’s disease and its treatments can cause excessive sweating, so much so
that a bed can become completely drenched. This can be a frightening
experience. Again, balancing the drug treatments properly can help, so discuss
these symptoms with your doctor or specialist.
Memory problems
Contrary to what was first thought, it is now accepted that Parkinson’s disease
can cause some memory problems, even in the early stages. Small things like
forgetting where you put your keys are typical. Patients may also be a little slow
16
to respond to questions, or not be able to add up a column of figures as quickly
as before. These symptoms should not to be confused with the early signs of
dementia that occur in Alzheimer’s disease. In Parkinson’s disease the irritating
little symptoms that do develop do not usually get much worse. Only a
minority of people go on to develop severe mental problems.
Pain
Pain is not a common feature of Parkinson’s disease. It does sometimes occur,
as do other sensory symptoms that are difficult to explain, such as pins and
needles or numbness. These symptoms usually respond better to adjusting the
Parkinson’s disease drug treatment than to pain-killers. Sometimes, other
groups of drugs such as tricyclic anti-depressants can be useful. Consult your
doctor or specialist if you are experiencing persistent or frequent onsets of pain.
Sexual difficulties
In a survey carried out by the Parkinson’s Disease Society UK, it was found that
a significant proportion of people with Parkinson’s disease complained of sexual
difficulties. It was by no means a problem that affected everyone, so having the
disease does not mean that difficulties will definitely follow. Having a chronic
disease of any kind can cause problems of both a physical and an emotional
nature, which can put considerable stress on a relationship, and the sexual
relationship is often the first to suffer. This is particularly true for people
affected by Parkinson’s disease because of the actual symptoms of the disease
and the drugs used to treat it. A specific type of Parkinsonism can cause
complete impotence in men. Sexual problems can affect any couple, not just
those where one of the partners has Parkinson’s disease, and standard therapies
and counselling will help. You should seek expert advice if you are having
problems in this area.
Depression and anxiety
About a third of all people with Parkinson’s disease will experience depression
during their illness and it seems to be that the nearer they are to the time of
diagnosis the more likely they are to be affected by depression. The chemical
imbalance in the brain itself which is present in Parkinson’s disease can lead to
depression, and this together with having to cope with a long-term disease
makes this symptom understandably common. The good news is that this
depression responds well to anti-depressant drugs.
Parkinson’s disease seems to make people more likely to be anxious, but we
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now know that anxiety and stress do not cause the disease. Tasks such as going
to the hospital can cause severe anxiety in affected people, and this may make
the signs and symptoms of the disease appear much worse. Just paying for the
shopping at the supermarket can become severely distressing. It is important to
recognise this and to try to ease the problem, for example by learning relaxation
techniques. Speak to your doctor or specialist if anxiety attacks are a problem.
It is very important to remember that no two people with Parkinson’s disease will ever show
exactly the same symptoms. Those listed above are some of the more common problems. The
disease is very unpredictable, which means that it is normal to have good days and bad days.
This unpredictability makes it very difficult to live with, not just for the affected person
themselves but also for their friends and relatives. People with Parkinson’s disease need extra
time and understanding so that they can maintain their independence.
Drugs used to treat Parkinson’s disease
Drugs used for Parkinson’s disease can be divided into five main groups. Most
of the medicines used to treat the disease have only been around since 1970,
and if the last 30 years are anything to go by, the next 30 should provide us
with many more options.
1 Drugs which replace dopamine
2 Drugs which mimic the action of dopamine
3 Drugs which inhibit the action of acetylcholine
4 Drugs which prevent the breakdown of dopamine
5 Others
1. Drugs which replace dopamine
These are the mainstay of treatment for Parkinson’s disease. Their names are
Sinemet (Co-careldopa) and Madopar (Co-beneldopa). They come in many
different strengths as tablets, capsules, dissolvable instant-action preparations
or controlled-release formulae. Each one has a specific use in the treatment of
Parkinson’s disease.
Both drugs are a combination of levodopa and a chemical known as a dopa
decarboxylase inhibitor. Levodopa given by mouth is absorbed into the system
and is eventually converted into dopamine within the nerve cells in the brain.
It is then used by these cells, as naturally occurring dopamine would be, to
18
send messages from one cell to the next. The function of the dopa
decarboxylase inhibitor in each case is to make sure that as much of the
levodopa reaches the target cells as possible by stopping it from being digested
on the way. This helps to limit the side effects. Levodopa was originally used
by itself, but this almost never happens now.
When someone first starts taking these drugs they may develop nausea and
dizziness, and also constipation and dark staining of the urine. In a few cases,
people taking the drugs may experience confusion, nightmares and
hallucinations. These drugs are, however, very good at relieving the symptoms
of Parkinson’s disease, and these rarer side effects should not put people off
trying them.
Often pharmacists advise people to take these drugs with food, but Madopar
and Sinemet are absorbed by the same system in the gut that absorbs protein.
This means that if the drugs are taken at the same time as a heavy meal
containing a lot of protein, such as red meat, chicken, fish, eggs or cheese,
some of the effect of the drug can be lost. Sinemet or Madopar only need to be
taken at the same time as food if nausea is a problem, and even then it is
sometimes more beneficial to add a special anti-sickness drug called
domperidone than to lose the effect of the drug.
A general rule to follow is that these drugs work best taken with a light meal or
on an empty stomach between meals. The only exception to this rule is
Madopar Controlled Release (CR). This drug floats on top of the stomach
contents, so it should be taken after meals or on an empty stomach between
meals. This absorption problem with protein does not mean that you should
avoid protein in your diet. It is an essential part of a balanced daily intake. The
advice usually given is that it is best to eat your main meal in the evening. This
allows the medicine to work well during the day when you need to be active,
then you can relax in the evening.
Large doses of Vitamin B6, such as those taken by women experiencing
hormonal problems, can interfere with the action of levodopa given without a
decarboxylase inhibitor. Some indigestion remedies may also interfere, so please
check with your specialist, doctor or pharmacist if you are concerned.
In the long term, some other side effects can develop. The tablets can become
less effective. They may appear to take longer to act on the symptoms at each
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dose and their effects can wear off suddenly (the on/off phenomenon). They
can also cause involuntary twisting or writhing movements of the limbs or face
called dyskinesias. Being very careful about when you take the drug helps to
minimise this happening.
2. Drugs which mimic the action of dopamine
These are called ‘dopamine agonists’. Their names are as follows:
Tablets Parlodel (bromocriptine)
Celance (pergolide)
Revanil (lysuride)
Requip (ropinirole)
Cabaser (cabergoline)
Pramipexol (mirapex)
Injection Britaject (apomorphine)
Instead of trying to replace the missing dopamine, these drugs act directly on
the receptor sites which dopamine stimulates, hence mimicking its action.
They can be used on their own as treatment or in combination with Sinemet or
Madopar. It is thought that using them early on their own may delay the need
for levodopa and therefore prevent the long-term side effects of this drug. Each
specialist has their own preference regarding treatment and eventually a
combination of drugs is used to carefully control the symptoms. Each group of
drugs can be very useful and has its place.
Agonists essentially have the same side effects as levodopa preparations. They
are more likely to cause nausea and dizziness when they are first taken, so anti-
sickness drugs may need to be given initially. Hallucinations, nightmares and
confusion are also more common. Careful monitoring of the dosage should
prevent these happening. A tiny dose is given to start with, and the dose is
then slowly increased until the best effect is achieved.
Only one kind of dopamine agonist in tablet form should be taken at any one
time. Some are taken once a day and others are taken three or four times a day.
Food does not interfere with these tablets. They can be taken before, during or
after meals. Apomorphine, the injectable agonist, can be used in combination
with all the other drugs. If you have severe asthma, heart problems, stomach
problems or vascular problems you must tell the doctor as these drugs could
20
make them worse. This group of drugs is most often used with younger people
but can be given to older people with caution.
These drugs should never be stopped suddenly.
3. Drugs which inhibit the action of acetylcholine
These drugs are known as anticholinergics. The ones that are commonly used
are as follows:
Artane (benzhexol)
Disipal (orphenadrine)
Cogentin (benztropine)
Kemadrin (procyclidine)
All of these are available in tablet form, some as a syrup and one as an injection.
These drugs work by dampening down the effect of acetylcholine within the
brain and the nervous system. They help to restore a balance between the
chemical messengers within the basal ganglia of the brain.
This group of drugs can be used to help suppress tremor, although with limited
success. They are also used in the initial stages of treatment by some doctors
and specialists to help delay the onset of side effects due to levodopa.
Common side effects of anticholinergics are a dry mouth and blurred vision,
plus urine retention in males. Hallucinations and confusion can also occur.
Anticholinergic drugs can also cause memory impairment in a significant
proportion of people using them. Given this, they are rarely used in people over
70 and are used with caution and in small doses with people under that age. In
men with prostate problems or people with glaucoma, this group of drugs can
make those problems much worse. If your doctor or specialist decides to try
this form of medication with you, he or she will have taken all of the above into
consideration first.
4. Drugs which prevent the breakdown of dopamine
The most common drug in this group is selegiline (Eldepryl). It is what is
known as a monoamine oxidase inhibitor or MAOI. Selegiline has been used
since the mid 1980’s and it was initially hoped that it might stop the disease
progressing. This, however, has proved not to be the case. In reality, because it
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stops the breakdown of dopamine, it gives a little relief from the symptoms of
the disease. It is a mild anti-depressant and has a slight amphetamine effect,
which means that it genuinely makes people feel better.
One research study has suggested that selegiline may be dangerous when taken
long-term in combination with Madopar or Sinemet (co-beneldopa or co-
careldopa). However, the findings of the research that led to this claim have
not so far been reproduced elsewhere, and other papers suggest that it is not
dangerous at all. Your doctor or specialist may have his or her own opinion about
this and it is worth discussing the subject if you are concerned. Whatever dose
of selegiline you are on, it should always be taken in the morning. If it is taken
later it can interfere with sleep and cause restlessness or even nightmares and
hallucinations.
Selegiline should usually be stopped gradually where necessary.
COMT (catechol O-methyl transferase) inhibitors are a new variety of drugs
that act to stop the breakdown of levodopa and dopamine, so prolonging the
action of Sinemet and Madopar. Tolcapone (Tasmar) is already available and
Entacapone should follow shortly. They will be a useful addition in the
treatment of Parkinson’s disease, especially for people in the later stages of the
disease, when Sinemet, Madopar or dopamine agonists stop working as
effectively.
These drugs should always be taken in combination with Sinemet or Madopar.
Usually the dose of Sinemet or Madopar will be reduced when the Tolcapone
or Entacapone is added, but not always. Since this group of drugs can
occassionally cause alteration in a person’s liver function the doctor will
probably want to check regular blood samples for the first few months. Also this
group of drugs may cause diarrhoea; if this is the case let your doctor or
specialist know.
5. Others
Amantidine (Symmetrel) was originally developed as an anti-viral drug and by
coincidence was found to help the symptoms of Parkinson’s disease. It is
thought that it works by bypassing the need for dopamine in a similar way to
dopamine agonists, but the target receptor sites it uses are different. It does
not help everyone and only works for a limited length of time in those cases
where it does have an effect. Because of how it works it is particularly useful in
22
treating Parkinsonism, but it can be used to treat Parkinson’s disease as well,
particularly where dyskinesias are a problem. On the whole it is a mild, well-
tolerated drug that rarely causes side effects, although it can cause sedation,
confusion, hallucinations, diarrhoea and ankle swelling in a few people when
used at higher doses.
New drugs are being developed all the time and information becomes outdated
very quickly - for example, several anti-dyskinesia drugs are currently being
tested. Please keep yourself informed by speaking to your doctor or specialist.
Surgery for Parkinson’s disease
Surgery has been used in the treatment of Parkinson’s disease for four decades.
Recently it has revived in popularity as new, precise methods of brain surgery
have made it more reliable and much safer. It is currently only available in
specialist centres around the UK. There are four main approaches.
1. Thalamotomy
A tiny area in a part of the brain called the thalamus is destroyed using
stereotaxic surgery. This operation is considered when tremor is disabling
and interfering with everyday life to the extent that a person requires help with
nearly all tasks. Every type of drug treatment will be tried first.
2. Pallidotomy
A tiny area in a part of the brain called the internal globus pallidus is
destroyed using the same method as above. This operation is used to relieve
severe dyskinesia, again only after every possible drug treatment has been tried.
3. Transplantation
Midbrain tissue from human foetuses can be transplanted into the diseased
area of the brain of the person with Parkinson’s disease. These foetal cells then
produce dopamine, which eventually relieves the symptoms of the disease.
This operation is still in the experimental stages and has major ethical
implications. Research is now being carried out to find out if animal tissue
could be used instead. It may be possible that we will develop the technology
in the future to make substantia nigra cells grow or regenerate using what are
known as stem cells with trophic factors.
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4. Deep brain stimulation Who can help me?

Instead of an area of the brain being permanently destroyed by stereotaxic
surgery, a device called a deep brain stimulator is inserted. This uses the same There are many professionals and voluntary organisations around to help people
technology as heart pace makers, but sends rapid electrical impulses to specific affected by Parkinson’s disease, their carers, families and friends. The diagram
areas of the brain rather than the heart muscle. The stimulator can be placed in that follows shows some of them.
the thalamus, where it is most useful for treating tremor, or in the pallidum or
subthalamus, where it is most effective for treating stiffness and dyskinesias.
To date, subthalamic stimulators seem to be the most effective.

Radiosurgery
Radiosurgery is a new technique for treating disorders of the brain that is
available in the UK in only a few specialised neurological centres.

The two main methods of carrying out radiosurgery are by gamma knife and by
modified linear accelerator (linac). Both of these procedures use a high energy
dose of radiation that can be focused on a very precise point within the brain.

Radiotherapy may require a number of visits over weeks or months, but

radiosurgery is completed in one visit and usually does not require an overnight
stay. This approach is sometimes used to treat deep-seated lesions or
malformations within the brain that may be difficult to reach by conventional
methods without causing damage.

Not all conditions are suitable for treatment by radiosurgery and the best
individual course of action should be discussed with your doctor. To date,
radiosurgery has produced disappointing results in the treatment of Parkinson’s
disease.

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Parkinsons 7/12/00 11:57 am Page 26
The GP
He or she may have known you for a long time and will be familiar with all of
your medical problems and history, not just Parkinson’s disease. They will
coordinate the care offered by the other professionals involved in your
treatment and help you to take advantage of the different information that
they can provide. If you have a problem, your GP is the person to ask first. If
they cannot help you they will be able to tell you who to contact.
The neurologist or geriatrician (the hospital consultant)
He or she has specialist knowledge about Parkinson’s disease. Usually they
decide which drug treatment is most suitable and can answer any questions you
have about the disease. You may only see the specialist on an occasional basis,
but your GP can always contact them if necessary. They will look after you if
you have to be admitted to hospital in connection with your Parkinson’s disease.
Nurses
This actually covers a whole range of different professionals. Some health areas
have Parkinson’s disease nurse specialists. They can usually advise on any
aspect of Parkinson’s disease and tell you what help is available for people
affected by Parkinson’s disease in your area. Other professionals rely on them
to provide expert knowledge. Sometimes you may see one of these nurses at a
clinic, or in your home, instead of seeing the doctor. District nurses carry out
more general nursing duties in the community, and practice nurses work
alongside GPs, and of course there are nurses in hospitals.
Physiotherapists
Exercise plays an important part in any healthy lifestyle. Physiotherapists work
in hospitals and in the community, and they can advise on exercise routines
which you should then follow at home. They can also give excellent advice on
moving around the home more easily and getting into and out of bed and the
bath, etc. This is essential to help you overcome the symptoms of the disease.
Parkinson’s disease should not stop you taking part in any of your usual exercise
routines and it is a good idea to keep them up for as long as possible.
Occupational therapists
There is no doubt that having Parkinson’s disease has a major effect on people’s
lives and makes everyday tasks more difficult. Occupational therapists can help
you plan your day so that there is a balance between work, rest and leisure
activities.
26
Having Parkinson’s disease does not necessarily mean that you have to give up
your job if you are still working. Occupational therapists can teach you
techniques to make tasks simpler and provide you with gadgets to help. It is
extremely important for you to pace yourself - try not to get over-tired and rest
if you have to. Some occupational therapists work in hospitals, others in the
community. You can also get in touch with them through Social Services.
Speech and language therapists
These will be able to help you overcome any speech or communication
problems you may have. This may involve teaching you to talk more slowly or
to project your voice again. They may be involved in checking that you are
swallowing properly, and they will be able to give you advice if you are not.
Dietician
Having excessive shaking, writhing movements, swallowing problems or even
just having Parkinson’s disease itself can cause weight loss. This, combined
with the fact that the drugs used to treat the disease do not always work well if
taken with high-protein foods, makes the dietician’s advice invaluable. They
will help you to maintain a healthy, balanced diet and a healthy weight,
although there is no specific diet for people with Parkinson’s disease.
Clinical psychologist
A psychologist may be involved in your care, especially if you are having severe
memory problems or if you are finding it very difficult to cope with your disease
emotionally. They may ask a psychiatrist for an opinion if you are depressed or
anxious. They may advise counselling.
Social Services
People affected by Parkinson’s disease and their carers will be assessed to see if
help is needed. This can take the form of actual physical help, gadgets or time
out for both people. If the home situation is particularly complicated a social
worker will be allocated to you.
Benefits Agency
You may be entitled to Disability Living Allowance/Attendance Allowance,
Carers Allowance or other benefits, and the benefits agency will help you with
this. Disabled drivers’ (orange) badges for your car are available through Social
Services, and you may also be entitled to one of these. You must tell the Driver
and Vehicle Licensing Authority in Swansea (see Other organisations that may be
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able to help at the end of this booklet) that you have been diagnosed as having
Parkinson’s disease. They will not stop you driving, but they need to know, as
does your insurance company. You may be entitled to a discount on your road
tax as well. Your local Post Office has information about this, and while you are
there, you can pick up a leaflet about free or discounted prescriptions.
to do, but try to accept your disease. It is a good idea to learn about the
disorder and work with the professionals to help them control your symptoms.
Your own positive attitude is the best therapy. That said, intensive research is
now taking place to develop drugs that will slow or even reverse the disease in
the future.

Pharmacist
He or she will be able to give you advice about your drug treatment. If you are
buying any over-the-counter remedies check with them to make sure they do
not react with your Parkinson’s disease medicines. Make sure you have checked
your entitlement for free or discounted prescriptions (see above).

Charity groups and voluntary organisations

These can offer a great deal of support. The Parkinson’s Disease Society (see
Other organisations that may be able to help) has a wealth of information on all
aspects of the disease, from where care is available to holidays to new research.
It also has a helpline. Local branches will give you the opportunity to meet
other people with Parkinson’s disease if you wish to do so. Other groups offer a
range of services.

Complimentary medicine
As with many diseases, massage, aromatherapy, acupuncture, special diets and
other complimentary treatments have their place. They can compliment
standard treatments well. If you are considering trying any of these, please use
a reputable practitioner and let your GP know.

What about the future?

It is almost impossible to predict how any one person will react to having
Parkinson’s disease. Every single person is different. It is important to
remember that the changes in your brain were happening before the signs and
symptoms of the disease became apparent enough to make a diagnosis, and you
have probably had subtle symptoms for a lot longer than you think. After
reading this booklet you may be able to pinpoint some of them.

To predict the future, look at the past. The disease will probably progress at
the same rate as it has been doing over the last few years - more quickly in
some people than in others. It is possibly the hardest thing anyone will ask you

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Parkinsons 7/12/00 11:57 am Page 30
Glossary
Acetylcholine A chemical
messenger in the brain and the rest
of the nervous system.
AkinesiaDifficulty in starting
movement.
Anti-emetic A drug that prevents
vomiting.
Basal ganglia A group of structures
and nuclei in the brain which help
control movement.
Benign essential tremor A
tremulous condition. Unlike
Parkinsonian tremor it gets worse
when the person tries to do
something.
Bradykinesia Slowness of
movement.
Cerebrospinal fluid (CSF) The
clear watery fluid that surrounds and
protects the brain and spinal cord.
Cerebrovascular accident (CVA)
A disruption to the blood supply to
the brain which leads to a stroke.
Chromosome Found in the nuclei
of all cells, chromosomes carry the
inherited, genetic information that
determines the activity of cells and
therefore the growth and functioning
of the whole body.
30
Chronic This term is used for
diseases or symptoms that last for a
long time.
CT scan Computerised tomography
scan. A computer-aided x-ray used to
provide a detailed picture of the
inside of a part of the body.
Degeneration Physical and
chemical changes in cells, tissues or
organs that reduce their efficiency.
Dopamine A chemical messenger
which is found in reduced levels in
the brains of people with Parkinson’s
disease.
Dyskinesia Abnormal movements
or the muscles resulting in twisting,
jerking or writhing.
Encephalitis An inflammation of
the brain which can be due to many
different causes.
Festination A tendency to take
short, shuffling, rapid steps and to
accelerate when walking.
Genes Genes are contained in the
chromosomes and are the units of all
hereditary material in the body.
Idiopathic Parkinson’s disease
The full name for Parkinson’s
disease, as opposed to Parkinsonism.
Internal globus pallidus A central
part of the brain which helps to
control movement.
Micrographia Small handwriting.
MPTP A toxic substance with the
chemical formula 1-methyl-4-phenyl-
1, 2, 6-tetrahydropyridine.
MRI Magnetic resonance imaging.
This scan produces detailed pictures
of the inside of the body using
magnetic waves.
Neuroleptics Drugs which block
dopamine receptors and which are
used to treat severe psychiatric
diseases.
Neurological Anything about the
brain or the rest of the nervous
system.
Neurotransmitter A chemical
messenger found in the nervous
system.
Parkinsonism A disorder or disease
which displays the signs and
symptoms of Parkinson’s disease but
which is not due to Idiopathic
Parkinson’s disease. The person will
have other problems as well as those
associated with Parkinson’s disease.
PET scan Positron Emission
Tomography Scan. This is a scan that
provides three-dimensional pictures
which can show the chemical activity
of the tissues being examined.
Rigidity The stiffness seen in
Parkinson’s disease.
Shunt A device which is inserted to
remove fluid from the brain.
SPECT scan Single photon
emission computed tomography scan
- see PET
Stereotaxic surgery Brain
operations that are carried out using
delicate instruments through a small
hole in the scull. The position for the
operation is very precisely located
using a metal frame attached to the
head and guided by CT scanning.
Striatum An area within the basal
ganglia of the brain.
Substantia nigra Dopamine-
producing cells within the midbrain.
Thalamus An area in the centre of
the brain.
Urine retention Inability or
difficulty in emptying the bladder.
Vascular About the blood vessels
anywhere in the body.
Voluntary movement Movement of
any part of the body that is willed by
the person carrying it out.
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Other organisations that may be able to help

Disablement Income Group (DIG)
Brain and Spine Helpline Unit 5
British Brain and Spine Foundation 19-23 Wedmore Street
7 Winchester House London N19 4RR
Kennington Park Tel: 0171 263 3981
Cranmer Road (Welfare benefits advisory service)
London SW9 6EJ
Tel: 0808 808 1000 Disability Income Group Scotland
(Information and support on neurological disorders for patients, carers and health 5 Quayside Street
professionals) Edinburgh EH6 6EJ
Tel: 0131 555 2811
Brain and Spinal Injury Charity (BASIC) (Welfare benefits advisory service)
Hope Hospital
Stott Lane DVLA Drivers’ Medical Group
Salford M6 8HD DVLA
Tel: 0870 750 000 Longview Road
(Information, research and support groups) Swansea SA99 1TU
Tel: 01792 783 438
Crossroads (The Association of Crossroads Care Attendant (Fitness to drive)
Schemes)
10 Regent Place International Tremor Foundation
Rugby ALAC Center
Warwickshire CV21 2PN Harold Wood Hospital
Tel: 01788 573653 Romford
(Practical support for carers; respite care at home) Essex RM3 0BE
Tel: 01708 378050
Disabled Drivers’ Association (Information on essential tremor)
National Headquarters
Ashwell Thorpe Parkinson’s Disease Society of the United Kingdom
Norwich NR16 1EX 215 Vauxhall Bridge Road
Tel: 01508 489449 London SW1V 1EJ
(Representation, information and advice on mobility issues) Tel: 0171 233 5373 helpline
(Welfare support, information and funds for research)
Disabled Living Foundation
380-384 Harrow Road
London W9 2HU
Tel: 0870 603 9177 helpline
(Advice on equipment for daily living)

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Progressive Supranuclear Palsy (PSP Europe) Association

The Outbuilding
Supporting the work of the British Brain and Spine
The Old Rectory Foundation
Wappenham
Nr Towcester NN12 8SQ In order for the British Brain and Spine Foundation to continue to fund its
Tel: 01327 860299 vital research and education work in brain and spine disorders, we need your
(Advocacy and support) help.

YES! I would like to help.

Sarah Matheson Trust
Please find enclosed a gift of £10 £15 £25 £ other
Neurovascular Medicine
Pickering Unit Name Mr/Mrs/Ms
St. Mary’s Hospital
Praed Street
Address
London W2 1NY
Tel: 0171 866 1520
(Information and support for people with Multiple System Atrophy, including Shy Postcode
Drager Syndrome)
or you may donate by Visa/Mastercard/CAF card by filling in the details
below or calling our donation line on 0171 582 8917
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British Brain and Spine Foundation, 7 Winchester House, Kennington Park,

Cranmer Road, London SW9 6EJ Telephone: 0171 582 8917
Fax: 0171 582 8712 Registered charity no.1010067

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Publications from BBSF Notes

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