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Living with Parkinson’s

a guide for people of working age affected by the condition


About the Parkinson’s Disease Society
The Parkinson’s Disease Society (PDS) works with people with
Parkinson’s, their carers, families and friends, and health and social
care professionals to provide support, information and advice. We
are committed to investing in research, education and campaigning
to improve the lives of people affected by the condition. The PDS
has over 30,000 members, and more than 330 branches, support
groups and special interest groups throughout the UK.

How you can help us


We are totally dependent on voluntary donations so if you would
like to make a contribution, it would be gratefully received. Any
money received will help us support others affected by Parkinson’s
through information, care and research. To make a donation, please
call 020 7931 1303, visit www.parkinsons.org.uk/donate or write
to Parkinson’s Disease Society, 215 Vauxhall Bridge Road, London
SW1V 1EJ. Thank you.

Parkinson’s Disease Society


215 Vauxhall Bridge Road
London SW1V 1EJ
Helpline: 0808 800 0303 (The Helpline is a confidential service.
Calls are free from UK landlines and some mobile networks.)
Email: enquiries@parkinsons.org.uk
www.parkinsons.org.uk

Thank you
Many thanks to Bridget McCall and all the Parkinson’s Disease
Society members who contributed to this booklet.
Living with Parkinson’s: a guide for people of working
age affected by the condition
Although Parkinson’s is more common in older people, in the UK
it is estimated that of the 10,000 people diagnosed each year, one
in 20 is under the age of 40. This means there are around 6,000
people of this age living with Parkinson’s in the UK.

This booklet addresses the particular challenges that people


with Parkinson’s who are of working age can face. These include
supporting children and teenagers, needing help and information
about work and money, and coping with the emotional effects of
being diagnosed at a younger age.

Everyone’s experience of living with Parkinson’s is different, but


we hope this guide answers many of your questions and, through
the voices of others affected, provides some inspiration.

Other PDS publications you may find useful include:


• The Employment Guide (code B103)
• The Carer’s Guide (code B071)
• Sex, Intimate Relationships and Parkinson’s booklet (code B034)
• Juvenile Parkinson’s information sheet (code FS85)
• Pregnancy and Parkinson’s information sheet (code FS93)
• Talking to Children about Parkinson’s information sheet
(code FS66)
• Introduction to the Younger Parkinson’s Network leaflet (code L1Y0)

Many other PDS resources are recommended throughout the


booklet. There are also signposts to other organisations, books
and websites, full details of which are listed at the back.
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Contents

6 Parkinson’s disease
14 Medical treatments
25 Emotional and psychological effects
33 Relationships
41 Being a parent
46 Living on your own
49 Communication
57 Independence and daily living
66 Diet and exercise
75 Travel and leisure
87 Work and money
93 Self-help
105 Resources and contacts

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Parkinson’s
disease

What is Parkinson’s?
Parkinson’s disease is a progressive and fluctuating neurological
condition affecting movements such as walking, swallowing and
writing. It has three main symptoms:
• Tremor, which occurs when the affected part of the body is at rest
and decreases or stops when it is in use. Tremor usually begins
in one hand or arm and often becomes more noticeable when the
person with Parkinson’s is anxious or excited. Although tremor is
the symptom that most people identify with Parkinson’s, it is only
present in around 70% of people with the condition.
• Muscular rigidity (which many people experience as stiffness).
This can cause the person with Parkinson’s to have problems
turning round, getting out of a chair, turning over in bed or making
fine finger movements, such as touch-typing or fastening a
button. Some people find that their posture becomes stooped or
their face becomes stiff, making facial expressions more difficult.
Rigidity can affect many everyday tasks and can sometimes be
painful.
• Slowness of movement. Initiating movements can become more
difficult and take longer to perform. Lack of co-ordination when
making movements can also be difficult.

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Other symptoms of Parkinson’s may include problems with balance
and walking, and difficulties with communication, including speech,
facial expression, body language and handwriting.

People with Parkinson’s can also experience non-motor symptoms,


such as sleep difficulties, depression, anxiety, excessive sweating,
bladder and bowel problems, saliva control difficulties and memory
problems. The PDS Non-motor Symptoms Questionnaire (B117)
can be completed and given to GPs to ensure any problems are
identified, discussed and treated.

Parkinson’s symptoms usually begin slowly and develop gradually,


in no particular order. Don’t be surprised if someone else you know
with Parkinson’s has very different symptoms to you. Everyone is
very different in terms of the nature, severity and rate of progression
of the symptoms they experience, and in their response to the
treatments available.

Want to know more?


This booklet does not provide in-depth information on the nature
of Parkinson’s. You will find this in many other Parkinson’s Disease
Society (PDS) publications, including:
• See the PDS booklet Parkinson’s and You (code P002) and DVD
Being There (code V012), for people who have been recently
diagnosed.
• See the PDS booklet Moving On (code B001), for those who have
had Parkinson’s for some years.
• Relevant books and websites are listed at the back of this booklet.
If you have questions or want to discuss the impact that Parkinson’s
is having on your life, contact the PDS Helpline on 0808 800 0303
for further advice and support.
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What is parkinsonism?
Parkinsonism is a term used to describe conditions that feature the
main symptoms of Parkinson’s – tremor, rigidity and slowness of
movement.

About 85% of people with parkinsonism have the most common


form, Parkinson’s disease (also known as idiopathic Parkinson’s
disease). The other 15% have other rarer conditions, similar to
Parkinson’s, such as multiple system atrophy (MSA) and progressive
supranuclear palsy (PSP), which are grouped with Parkinson’s under
the ‘umbrella’ term of parkinsonism.

Want to know more?


• See the PDS information sheet Parkinsonism (code FS14).
• If you have been diagnosed with MSA, you may wish to contact
the Sarah Matheson Trust for Multiple System Atrophy.
•If you have been diagnosed with PSP, you may wish to contact the
PSP (Europe) Association.

What impact does the age at which you


are diagnosed have on Parkinson’s?
People of any age can be diagnosed with Parkinson’s, although the
condition is more common in older people. The average age of onset
is around 60 years and the risk of developing the condition increases
with age. However, younger people can also have Parkinson’s – it is
estimated that one in 20 of those diagnosed are under 40 years old.

Your age can have a significant impact on the medical management


options that may be considered to be the most appropriate for you,

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how you respond to the medication and the effects the condition has
on your lifestyle.

‘Young-onset Parkinson’s disease’ means a diagnosis of Parkinson’s


in someone who is under the age 40, although the term is often used
to refer to anyone of working age (i.e. up to 65).

In the past, some younger people have found it hard to get an


accurate diagnosis. However, this has become less of a problem
in recent years, as recognition of the fact that younger people can
have Parkinson’s has improved.

When a diagnosis of Parkinson’s is suspected in a younger person,


it is very important to rule out other possible conditions, such
as MSA, PSP or Wilson’s disease – a rare, inherited neurological
condition that has some parkinsonian features.

Tremor tends to occur slightly less often in younger people, but


depression and dystonic spasms (sustained abnormal postures,
such as turning in or arching of the foot) seem to be more common.

Treatments will be similar to those used in older people, but two


considerations will greatly affect what is prescribed for younger
people: the fact that they will have to live with Parkinson’s for many
years; and the more sensitive response to the medication that many
younger people have, especially with regard to side effects.

For these reasons, all younger people with Parkinson’s should


be under the care of a neurologist who has a special interest
in Parkinson’s. Any decisions on treatment need to involve a
partnership between the doctor and person with Parkinson’s,
taking into account their abilities, personal circumstances and

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requirements – which may be very different from another younger
person with Parkinson’s. The person’s family may also be involved
in decisions about treatment.

Treatment strategies might include:


• not starting the medication immediately if symptoms are mild and
can be managed through a healthy lifestyle, alongside the support
of professionals, such as physiotherapists and occupational
therapists
• starting treatment with dopamine agonists or monoamine oxidase
B inhibitors, rather than levodopa. These drugs tend to cause fewer
side effects while providing good symptom control in the early
stages. They are, however, generally not as effective as levodopa
– which may be used from the start if it gives an individual better
symptom control that enables the person to go on working, for
example. However, levodopa is usually prescribed as the condition
progresses. It is not uncommon for a person to be taking more than
one drug to treat their symptoms
• surgery, which may be offered to those who have drug-resistant
symptoms or who no longer obtain sufficient symptom control
from their medication. Younger people are often better candidates
for surgery because they are usually in better health and don’t
have the complicating co-existing conditions that older people
often have

Many younger people with Parkinson’s find that it is the psychological,


emotional and social consequences of living with Parkinson’s that
have the greatest impact on their lifestyle. Common concerns include
finances, employment, relationships and raising children.

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Want to know more?
• The PDS’s Younger Parkinson’s Network (YPN) can provide you
with more information and contact with other younger people
affected by Parkinson’s.
• The book Living with Parkinson’s Disease by Bridget McCall has
a chapter on young-onset Parkinson’s.

Can children get Parkinson’s?


Very rarely, the symptoms of Parkinson’s can occur in children
and young people aged under 21 years. This is known as ‘juvenile
Parkinson’s disease’. Anyone with suspected juvenile Parkinson’s
disease should seek advice from a neurologist who has expertise in
treating children.

Although, in some cases, the diagnosis may be Parkinson’s,


the symptoms can also be caused by rare conditions, including
Wilson’s disease, dopa-responsive dystonia (also known as
Segawa’s syndrome) or an unusual form of Huntington’s disease.

Want to know more?


• See the PDS information sheet Juvenile Parkinson’s (code FS85).

Can women’s menstrual cycles affect


their Parkinson’s?
The information on menstruation and Parkinson’s is limited,
but many women with the condition report a worsening of their
symptoms before and during their period.

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Some women also find that they have problems with managing the
practical aspects of having a period, especially if their symptoms
are severe.

If you are experiencing menstrual or other gynaecological problems,


you should discuss this further with your doctor or Parkinson’s
Disease Nurse Specialist (PDNS).

Is there a link between oestrogen and


Parkinson’s?
Information on the menopause and Parkinson’s is limited. However,
research suggests that oestrogen may help protect the dopamine
pathways in Parkinson’s. This may help to explain why slightly more
men develop the condition than women, particularly in younger age
groups.

Some studies have found that Parkinson’s symptoms may worsen


once a woman has reached the menopause, which can often be
alleviated by hormone replacement therapy (HRT). However, other
studies found inconclusive evidence of the positive effects of HRT.
Further research is needed in this area.

If you are concerned about your symptoms, you should discuss this
further with your doctor.

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My life with Parkinson’s
by Andrea Stott, who was diagnosed with Parkinson’s in 2007
at the age of 34

A week after my 21st birthday, I gave birth to my son, Ben. Shortly


afterwards, my leg started to shake, particularly if I was stressed,
tired or unwell. I was reassured it was a nerve damaged in childbirth
and thought no more about it.
Apart from depression and excessive tiredness, I did not really
notice anything more until 2005. By this time I was married to Pablo
and had my daughter Isabel. I was becoming increasingly tired in
the afternoon and my arm shook if I undertook anything energetic.
Then I started to stutter and my leg began to drag. I couldn’t write
very well, use a computer mouse easily or even brush my teeth with
a manual toothbrush.
My doctor thought it could be a benign tremor and prescribed
me with high blood pressure tablets to try to ease my symptoms.
But the tremor didn’t really change and as I already had low blood
pressure, I ended up passing out at the top of the stairs and falling
from top to bottom!
I was then referred to a specialist. There was mention of Parkinson’s
disease but it was not high on anybody’s list.
After waiting for what seemed like an eternity, and an MRI scan
later, I met the neurologist who said without a doubt it was
Parkinson’s. In a way, finding out I had this condition, was a relief,
but in honesty, I knew next to nothing about it or the implications of
having it. As far as I was aware, it was an illness for older people.
Well, that was obviously wrong.

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Medical
treatments

Although there is no cure for Parkinson’s at present, many treatments


are available to help control the symptoms and enable people
to maintain a good quality of life. These include drugs, surgery,
physiotherapy, speech and language therapy, and occupational therapy.

Parkinson’s is a complex condition and, therefore, treatment


depends very much on individual need and will be subject to change
over time. A multidisciplinary team approach, involving several
different health and social care professionals, is recommended to
ensure that you remain as independent as possible.

This booklet does not give detailed information on the medical


options available to treat Parkinson’s, as this is contained in other
PDS publications. However, in this section we answer commonly
asked questions that people have about the medical treatments.

What drug treatments are available?


Medication is the main treatment for Parkinson’s and there are
several types of drugs available that work in different ways to help
control the symptoms, including:
• levodopa
• dopamine agonists
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• catechol-O-methyl transferase (COMT) inhibitors
• monoamine oxidase-B (MAO-B) inhibitors
• anticholinergics
• amantadine

These may be used on their own or in combination. As each person


with Parkinson’s is different in terms of how the condition affects
them and their response to treatments, your regimen is likely to be
different from another person with Parkinson’s – in terms of the drug(s)
prescribed, the dosage and the times of the day that you take them.

Research continues to expand the medication options for people


with Parkinson’s all the time. However, although the drugs currently
available can be very effective, they are not a cure and the condition
will continue to progress. As it does so, your drug regimen may need
to be adjusted or new drugs added to improve symptom control.

Adjusting to a life where you must take medication every day can
be challenging. Make sure you have all the information you need
about the drugs you have been prescribed. Don’t be afraid to ask
your doctor or PDNS if you are unsure about anything. If you have a
complicated regimen or find it hard to remember when to take your
medication, you may find it helpful to use a pill box with a timer.

Want to know more?


•See the PDS booklet The Drug Treatment of Parkinson’s Disease
(code B013), which describes all the medication options that are
currently available to treat Parkinson’s.
•See also the information sheet Pill Timers (code FS53).

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I was in hospital recently and had a lot of
trouble getting my medication on time.
How can I prevent this happening again?
This is, unfortunately, a common problem and one that the PDS is
campaigning on, and has been for some time. There are many things
you can do to help prevent this happening again, which are detailed
in the resources listed below. If you have a PDNS, they should also be
able to advise further and perhaps liaise with the hospital staff before
you are admitted. Talking to other people with Parkinson’s about their
experiences and how they overcame any problems may also help.

Want to know more?


•See the PDS ‘Get it on time’ materials and the information sheets
Going into Hospital (code FS61) and Anaesthesia (code FS36).
•There is also the information sheet Hospital Stays: Information
for Professionals (code FS62).

How can I ensure that people know I have


Parkinson’s and what medication I take if
I have an accident?
In the event of emergency admission to hospital, it is essential that
those looking after you are made aware of your condition as soon
as possible to ensure that appropriate treatment can be given. It
is a good idea, particularly if you live alone, to use the form that is
included in the PDS’s information sheet Going into Hospital (code
FS61) to list your drugs and your needs, along with any other
considerations (such as needing someone to look after any animals,
who to contact in an emergency, and the name of your doctor

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and any other professionals involved in your care). This should be
kept in an accessible place, such as a handbag or wallet, or by the
telephone in case you are unable to communicate your needs in an
emergency.

The PDS produces a Medication Card (code M1) for people to


carry with them in a purse or a wallet. This has space for you to put
details of the drugs you are taking, your doctor’s number and other
emergency contact details. There is also a PDS alert card (code
M14), which contains some brief messages to help people with
Parkinson’s who may have communication difficulties when they
are out and about.

Some people also find that wearing a MedicAlert bracelet or


pendant can be useful, especially in the event of an emergency
admission. These are items of jewellery that provide contact details
and medical information if someone is involved in an accident.
These will alert people to your particular health issues if you are
unable to communicate for any reason.

I have read that some drugs used to treat


Parkinson’s can cause people to gamble.
Is this true?
It is thought that there may be a connection between some dopamine
agonists (a class of drugs used to treat Parkinson’s) and an increase
in gambling and/or other types of compulsive behaviour, including
increased spending, alcohol consumption, compulsive eating and
risk-taking behaviours. Hypersexuality can also be a feature.

This is, however, a relatively rare side effect, estimated to affect


up to 14% of people with Parkinson’s who are on these drugs.

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Some studies have suggested that other types of anti-Parkinson’s
medication can also produce similar side effects in a relatively small
group of people.

Anyone concerned about any obsessive-compulsive behaviour they


are experiencing should discuss this with their doctor or Parkinson’s
specialist as soon as possible. The person’s family should also be
made aware of the potential problems associated with these drugs.
Treatment may include reducing the dose or changing the type of
anti-Parkinson’s medication, and psychotherapy.

Want to know more?


• See the PDS information sheets Compulsive Behaviour and
Parkinson’s (code FS77), Gambling and Parkinson’s (code FS84)
and Hypersexuality and Parkinson’s (code FS87).

Can certain types of medication cause


Parkinson’s?
A condition with symptoms similar to Parkinson’s – drug-induced
parkinsonism – that is caused by taking certain medications. Any
drug that blocks dopamine (the chemical messenger that is in short
supply in the brains of people with Parkinson’s) can have this effect.
These include those used to treat serious psychiatric problems and
some of the drugs used to treat other problems such as dizziness,
nausea and high blood pressure.

If you are concerned about drugs you are taking, we suggest you
discuss this further with your doctor.

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Want to know more?
• See the PDS information sheet Drug-induced Parkinsonism
(code FS38).

What surgery is available to treat


Parkinson’s?
Surgical techniques have been used to treat Parkinson’s since the
1930s. The early procedures were risky and were largely abandoned
once the drug levodopa became an established treatment for the
condition in the late 1960s. In recent years, there have been further
advances in surgical techniques, as well as developments in neuro-
imaging and computer technology, which have enabled surgeons to
pinpoint target sites in the brain more exactly.

Surgery does not provide a cure or slow down progression of


Parkinson’s but, in some people, can provide good symptom
control. Because of the risks involved, surgery is mainly used to
treat people who have had Parkinson’s for several years (with drug-
resistant symptoms) or those who are finding that drugs no longer
control their symptoms.

If you are interested in surgery as a possible treatment for your


Parkinson’s, you should discuss this further with your doctor.

Want to know more?


• See the PDS booklet Surgery and Parkinson’s (code B123) and
the information sheet Deep Brain Stimulation (code FS12).

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What kind of doctors may be involved
in my care?
The first port of call for anyone who suspects that they may have
Parkinson’s is their general practitioner (GP). They usually work
with a team that may include practice nurses, district nurses, health
visitors, therapists and counsellors. The service that they and their
team provide is known as primary care.

Your GP will play a key role in your long-term care once you have
been diagnosed with Parkinson’s, providing you with treatment
and health advice, and helping you to access the services you
need. They have a great deal of knowledge about many aspects of
healthcare and should work closely with any specialist doctors you
see to manage your care.

The service provided by doctors and other healthcare professionals


working in hospital settings is known as secondary care. Doctors
who specialise in Parkinson’s tend to be either neurologists or
consultant physicians with a particular interest in the care of older
people. You can only access them, even if you go privately, if you
have a referral from your GP.

Multidisciplinary working, involving a variety of health and social


care professionals, is recommended for Parkinson’s. Specialists,
therefore, often run Parkinson’s clinics involving many other health
professionals, including doctors, PDNSs and therapists.

It is the recommendation of the National Institute for Health and


Clinical Excellence (NICE) that all people with Parkinson’s should see
a specialist for confirmation of the diagnosis and drug management.

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What does a Parkinson’s Disease Nurse
Specialist do?
PDNSs have expertise in Parkinson’s and its treatment and they
work in hospitals or the community, or a combination of the two.
Unfortunately, they are not yet available in every area, but the PDS
is working with hospitals and primary care trusts to increase their
numbers. To access them you usually have to be a patient of a
doctor who they work with, although some nurse specialists have
an open access policy. The PDS Helpline can advise you whether
there is a nurse specialist in your area.

PDNSs support people with Parkinson’s and their families by:


• assessing the person with Parkinson’s and identifying their
needs – they often act as key workers, linking their patients
to professionals and services that can help them
•developing care plans
• helping with drug management
• providing information and education on the condition to people
with Parkinson’s, carers, and health and social care professionals
• problem solving
• providing emotional and lifestyle support
• providing support when the person with Parkinson’s is admitted
to hospital

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I find it hard to talk to my doctor.
Can you give me any tips?
This is a problem that affects many people with Parkinson’s.
However, it is important that you are able to speak to your doctor
about anything you find difficult or don’t understand, to ensure that
you obtain the best treatment possible. The following tips may help:
• Prepare yourself for the appointment beforehand and think about
what you want to gain from it.
• Make a list of the questions you want to ask your doctor. Keep
them as brief as possible. It may help to hand the list to them at
the appointment.
• Use the PDS’s Non-motor Symptoms Questionnaire (code B117)
to help your doctor diagnose any non-motor problems.
• Take a leaflet or other information with you that describes the
problem you want to discuss as a starting point.
•Keep a diary of symptoms, side effects and other difficulties you
have. This can help you to describe your experiences to your
doctor.
•Don’t feel you have to use medical ‘jargon’, just use the words you
feel comfortable with. If the doctor uses terms you don’t understand,
ask them to explain them to you. It is much better to admit that you
don’t understand than to pretend you do and then find you don’t
know what you are supposed to do when you get home.
• Take someone with you to give you moral support or to act
as an advocate for you if you find it hard to communicate, and
take notes.
• Bring your medication with you, including the bottle or packaging.
It can be hard to remember the names of each one, particularly if
you are on a complicated regimen.

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• Remember that however embarrassing you feel your query is, you
won’t be the first to ask. Doctors are used to dealing with all kinds
of problems and they can’t help you if they don’t know what is
really worrying you.

If you really can’t communicate with your doctor or you find them
unsympathetic, the answer may be to change your GP. You can do
this at any time without giving a reason. This could be to change to
another doctor in the same surgery or you could approach another
GP practice and ask if you can register. However, the GP surgery is
under no obligation to accept you or to give a reason for this. Your
local primary care trust’s Patient Advice and Liaison Service (PALS)
should be able to advise you further.

Want to know more?


•See the PDS information sheets Talking to Your Doctor (code
FS71) and Keeping a Diary (code FS69).
•See How to Get the Best from Your Doctor by Dr Tom Smith.
• See The Patients Association booklet You and Your Doctor.
• Visit www.embarrassingproblems.com – a website that provides
information and advice on embarrassing health problems that you
may find hard to discuss.

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My life with Parkinson’s
by Tina Walker, who was diagnosed with Parkinson’s
in 2003 at the age of 43

When I was working as an occupational therapist, the main thing


that hit me whenever I was working with a person with Parkinson’s
was the importance of the timing of medication. Often it takes
some time to establish the most appropriate drug treatment for an
individual and even then it remains optimal for a variable length of
time, because of the differential, progressive nature of the condition.

Over time the individual may experience increasing periods when


the effect of the most recent dose wears off before the next one is
due or has begun to work. Involuntary movements may appear and
there may be sudden switches from being ‘on’ and able to move to
being ‘off’ and immobile. One minute the individual would be able
to go about their day-to-day activities, and the next they would be
completely frozen.

This would obviously impact on my work as an occupational


therapist and how effective I could be. I would find that if a person
had taken a dose late or missed a dose before I saw them, there
would be next to nothing I could do as a therapeutic intervention
to make an immediate difference to their wellbeing.

Having Parkinson’s myself has only served to reiterate how vitally


important medication is to somebody with the condition. About
an hour before a dose is due, I start getting jittery and if I take a
dose late, day-to-day tasks become increasingly difficult for me
to perform.

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Emotional and
psychological
effects

For many people, it is the emotional and psychological effects of


Parkinson’s that are the most difficult to cope with. How your life
is affected will depend on many factors, including:
• the symptoms you experience and what impact they have on the
activities you do
• your response to treatment
• the age you are at diagnosis
• your personal circumstances
• your personality and approach to life
• what matters most to you – practically, emotionally, psychologically
and spiritually – and how these are affected by Parkinson’s
• the support that is available to you
• the effect the condition has on your relationships

Although each person with Parkinson’s is very different, the time


around diagnosis and just afterwards is recognised as being difficult
for most people. The feelings that people have when they are
diagnosed vary and can sometimes be conflicting. They may:
• have a sense of relief that there is a reason for the problems they
have been experiencing

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• feel devastated, angry, depressed and/or anxious
• not accept what is happening, hide it or have trouble telling their
families or friends

Acknowledging your feelings and accepting the diagnosis is the first


major step in living successfully with Parkinson’s. If you have just
been diagnosed, give yourself time to adjust to the news. Don’t make
any major decisions about your life until you have had time to accept
the diagnosis and have found appropriate sources of information
and support.

In the early stages of Parkinson’s, many people find that their


symptoms are mild and can be managed effectively with the
treatments that are available. However, over time, as the condition
progresses, it starts to impact more on a person’s life. When this
happens, many people find that their emotions fluctuate and
sometimes they have low periods when they feel down or depressed,
especially if these feelings coincide with major changes in their life
that they do not welcome, such as having to give up work.

Sometimes I find living with Parkinson’s


emotionally difficult to cope with. How do
I find someone to talk to?
Talking to someone about how you feel about your situation can help
you to acknowledge the emotions you have, find ways of expressing
them and identify solutions to help overcome any difficulties you have.

If you are finding things difficult, make sure you find some support
for yourself before the situation reaches crisis point. Many people
find that they are able to cope more easily with the practical

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day-to-day issues that Parkinson’s throws at them once they have
found ways of managing its emotional and psychological effects.
Who you talk to depends on your personal circumstances, what you
find hard to deal with and who you feel most comfortable with. You
may choose to talk to someone who knows you well, such as a partner,
relative or friend. However, some people prefer to discuss how they
feel with someone who is not closely involved in their life – perhaps
someone else with Parkinson’s or a carer they have met through a local
PDS branch or the Younger Parkinson’s Network (YPN).

If you don’t want to meet people face-to-face or if you live in an area


with no support group nearby, there are also several discussion forums
on the internet, including the online forum at www.parkinsons.org.uk

Discussing your feelings with a health or social care professional


is another approach. This might be a PDNS, a therapist, a PDS
Helpline adviser or a local PDS Information and Support Worker.

Some people also find it helpful to talk to a professional counsellor.


Counselling involves using psychological or talking therapies to
help you look at your life and the feelings you have. It is not about
giving advice, but providing space and time for you to explore your
feelings and behaviour in order to gain insight into what you find
most difficult and why. This can help you to resolve your feelings,
accept your situation or make changes to your life.

Many GP surgeries have counsellors attached to their practice


or can provide you with information about other local sources of
counselling. There are also several counselling organisations that
can provide you with further information, including details of private
counsellors. These include Relate and the British Association for
Counselling and Psychotherapy.

27
Want to know more?
• Author and adviser Denise Robertson writes a regular column on
emotional issues for The Parkinson, the PDS membership magazine.
• The mental health charity Mind publishes a comprehensive guide,
Making Sense of Counselling, which discusses what counselling
is, how it can help, what it involves, the types available and how
to find a counsellor. There is a small charge for this publication.

Is depression common in Parkinson’s?


Depression affects as many as 30–40% of all people with
Parkinson’s at some stage. Symptoms may include low mood and
lack of motivation, sleep and appetite disturbances, difficulty in
concentration and lack of energy.

Depression in Parkinson’s is complicated. Biological changes in the


brain may be partly responsible because dopamine, the chemical
messenger that is in short supply in the brains of people with
Parkinson’s, is one of three that are involved in the biochemistry
of depression. Recent research has suggested that the other two,
serotonin and noradrenaline, may also be connected to Parkinson’s.

In addition, depression for many people will be a response to


living with the condition and the changes that it may bring to their
life. Some people are particularly vulnerable to depression as the
condition progresses and symptoms get more pronounced. Times
of change, such as giving up work or activities once enjoyed, can
also have a significant impact on outlook and mood.

Treatments for depression in Parkinson’s may include adjusting


the anti-Parkinson’s medication, antidepressants (some are more

28
suitable than others for people who have Parkinson’s), counselling
or other psychological treatments, exercise and relaxation.

Want to know more?


• See the PDS information sheet Depression and Parkinson’s
(code FS56).
• PDS Helpline advisers who can provide a listening ear if you’d like
to speak to someone about how you are feeling.
• Support is available from mental health organisations, such as the
Depression Alliance and Mind.
• The Royal College of Psychiatrists publishes several accessible
guides to mental health issues, including depression.

Are panic attacks common in Parkinson’s?


Panicking is one of the body’s defences and is a natural reaction
to fear or danger. A surge of adrenaline is released that makes you
alert and ready for action, if needed.

Some people, however, experience panic attacks for no apparent


reason. With Parkinson’s, they can be caused by anxiety about the
condition and your ability to manage in certain situations. They can
also be a side effect of some medications.

Panic attacks can be frightening, but they don’t actually harm


you. However, unless controlled, they can make people afraid
to do everyday things because of a possible attack. You should
discuss this problem with your doctor. Treatment strategies
include medication and cognitive behavioural therapy, a form of
psychotherapy. Relaxation techniques can also help, e.g. counting

29
slowly in your head, listening to soothing music, a warm bath, yoga
or meditation.

Want to know more?


• See the PDS information sheet Anxiety and Parkinson’s
(code FS96).
• The mental health organisation Mind has a leaflet on panic attacks.
• Other organisations that can provide support include No Panic,
First Steps to Freedom and Anxiety UK. The useful contacts
section at the back of this booklet has further details of these
organisations.

I used to have a strong faith but this has


been thrown into question. What can I do?
Spirituality is a very important part of many people’s lives. For some,
it involves a religious faith or culture that influences how they lead
their life, their beliefs and sometimes their attitude to disability and
ill health. For others, it is more about their sense of self and attitude
to life or the things that are important – their family, job, interests,
football team, etc. A long-term condition like Parkinson’s can have
significant effects on a person’s spirituality.

For some, it is a positive experience – one that strengthens their


beliefs and/or gives them a new appreciation for what is important
to them. Unfortunately, others find it hard to hold onto their faith
because it makes them question everything, especially if they have
had to give up something that gave them great satisfaction and was
a large part of their identity – such as a job or interest.

30
Very little has been written about spirituality and Parkinson’s, and
because both are such individual experiences, you have to find
solutions to suit your particular needs.

You may also have a religious faith or be from a culture that means
that you have particular attitudes or requirements regarding certain
medical treatments or procedures. For instance, dietary factors
might also be an important consideration if you have to go into
hospital or for respite care. If these are issues for you, discuss
them with your doctor, PDNS or the other health or social care
professionals who are involved in your care.

Want to know more?


• The Royal College of Psychiatrists has a leaflet Spirituality and
Mental Health. Visit www.rcpsych.ac.uk
• Self-help books may help you explore this subject in more detail.
Other people with long-term illnesses have highlighted the books by
Bernie Siegel (a cancer surgeon) and Rachel Naomi Remen (a doctor
and counsellor, who has a chronic illness herself) as being helpful to
them in exploring spiritual issues.

31
My life with Parkinson’s
by Susan Kell, who was diagnosed with Parkinson’s in 1997
at the age of 43

I was diagnosed on 6 March 1997 – you don’t forget dates like


that. I was working as a registered general nurse on a busy surgical
ward, having embarked on a new career after a period of staying at
home and looking after our three children. It had been a challenge
studying to be a nurse – little did I know that I was about to face a
bigger challenge in Parkinson’s.

Initially, I coped very well. After ringing the PDS and the YPN – and
reading what was in the library – I got on with life, not hiding my
condition, but not mixing with others with Parkinson’s.

Only this year did I feel that the condition was winning the battle.
Strangely enough it was depression, not Parkinson’s – although it is
associated with the condition – that made me wave the white flag
and surrender.

Fortunately I have an excellent GP and during a consultation, he


spotted my low mood. I admitted I was not very happy, but, “no, not
me, I’m not depressed”. I went on my way with an assessment that
would inform me if I needed medication and a prescription – just in
case. To my surprise, I was moderately depressed and commenced
yet another lot of pills!

It has taken over seven months to be back to ‘normal’ and fighting


the good fight yet again. I can now focus on the positive aspects of
my life with Parkinson’s – such as lots of quality time with my two-
year-old grandson. I am here for my pregnant daughter, spend more
time with my husband and still have an active social life.

32
Relationships

Changes to relationships of all kinds – personal and professional –


are common when someone has Parkinson’s, and can occur at any
stage in the condition. Some people find that they are able to adapt
to these changes and find ways of accommodating them in their
lives. Others find them difficult and feel an increased strain on their
family relationships, in particular.

Relationships can be affected by many factors, including the


following.

Reaction to diagnosis
Reactions to diagnosis and individual expectations of Parkinson’s
are very varied. Some people are very fearful and assume that they
will become very disabled very quickly; others expect only minimal
effects. Sometimes, the person with Parkinson’s and their partner
or family have different expectations and responses, which can lead
to conflict.

It is important to obtain as much information about Parkinson’s


as you can to ensure that your expectations are as realistic as
possible, and to discuss these with your partner, family, friends
and the health or social care professionals involved in your care.

33
Changing roles within a relationship
When someone has Parkinson’s, there may be changes in
relationships and roles within partnerships and families that result
in people taking on different responsibilities or even reversing their
roles. This can be difficult for all concerned. Partners and family
members can feel pressured by these changes, and the person with
Parkinson’s can miss the roles they had or even feel that they no
longer have one. This can lead to feelings of hostility, resentment,
guilt, loss and powerlessness within a relationship.

Communication
Parkinson’s can affect all types of communication – verbal, facial
expression, body language and writing. The loss of these skills can
have a profound effect on personal and professional relationships.
Lack of facial expression or body language can present a
misleading picture to other people – they may think that you are
uninterested or unresponsive when this is not the case, and this
can cause misunderstandings. Some people also find it harder to
make intimate gestures, such as squeezing a hand, that form part
of the relationship they have with their partner.

Social isolation
Without support, some people with Parkinson’s can become
withdrawn and introverted, especially if they have trouble
communicating. Feelings about loss of social standing within the
family group and/or workplace can lead to a reduced sense of
self-worth and a reluctance to socialise – particularly if they feel that
their symptoms stand out and they are embarrassed by them. The
situation can be made worse if family or friends are unsupportive,
or lack understanding, or if reactions from members of the general
public are unsympathetic.

34
Symptoms of Parkinson’s
Symptoms such as depression and fatigue, which are common in
Parkinson’s, can have significant effects on relationships. Mood
swings can also occur as a result of fluctuations in dopamine
levels within the brain and may be linked to the timing of the drugs.
Changes in mood can be very dramatic. When the medication
is working, the person can feel relaxed and positive about their
situation. When it is not working, feelings of anxiety and pessimistic
thoughts can dominate. This can be very difficult to live with – for the
person with Parkinson’s and their family.

Tips for dealing with change


• Talk through your feelings with each other without trying to
apportion blame.
• Although some roles may have to change, in most cases,
work can still be shared so that neither person carries all the
responsibility.
• Work together to find solutions that everyone is happy with.
A degree of flexibility and compromise on the part of all
concerned may be a necessary ingredient of this process.
• Decide what your priorities are and concentrate your energies
on these.
• Drop, change or find help with activities that are not so important.
• Seek help if you are finding it difficult to resolve issues.
Professionals, such as occupational therapists, PDNSs, PDS
Information and Support Workers, PDS Helpline advisers,
counsellors and psychologists, may be able to offer support
and advice.
• Talk to other people with Parkinson’s and their families who have
experienced similar problems.
35
• Retain your sense of humour. This will help you keep things in
perspective and lighten stressful moments.
• Don’t let Parkinson’s dominate everything you do. Make sure you
enjoy shared activities, even if you have to adapt them to make
them easier.
• Get support before difficulties reach crisis point.
• Remember that the effects on relationships are not always
detrimental. The PDS has met many couples and families who
say that their relationships have been greatly strengthened by
their experiences of coping with Parkinson’s together.

Want to know more?


• See the PDS information sheets Communication (code FS06),
Depression and Parkinson’s (code FS56) and Fatigue and
Parkinson’s (code FS72).
• Parkinson’s Disease: A Self-Help Guide for Patients and their
Carers by Marjan Jahanshahi and C David Marsden has a
particular focus on the psychosocial effects of having Parkinson’s
and contains tips and other useful advice.
• Another useful resource is Living with a Long-Term Illness: the
facts by Frankie Campling and Michael Sharpe, which includes
several chapters on emotions and interpersonal relationships.

What effect does Parkinson’s have on


sex and intimate relationships?
Sex is important to most people, whether they have Parkinson’s
or not. A diagnosis of Parkinson’s may affect your sex life, but it
doesn’t mean that sexual problems are inevitable. Surveys have,
in fact, shown that the main causes of problems in the sex lives
36
of people with Parkinson’s are the same as those that affect the
general population. The following factors affect us all and can
impact on our sex lives:
• Tiredness
• Stress
• Financial worries
• Concerns about the future
• Worries about self-image
• Lack of communication

However, other causes are more directly related to the condition


itself. Parkinson’s interferes with freedom and fluidity of movement
and can make gestures less spontaneous. Showing affection may
sometimes be harder for a person with Parkinson’s, as they may
not always be steady enough to give a hug or lean over to give a
kiss. A spouse or sexual partner who doesn’t have Parkinson’s may
also find it difficult to make the transition from providing practical
support to being intimate sexually. Stress and anxiety experienced
by either party can also be major contributors to problems with
intimacy and sexual relationships.

The types of problems that people with Parkinson’s can experience


include:
• lack of interest in and desire for sex
• lack of arousal
• difficulties with the act itself, including achieving orgasm
• increased desire for sex as a rare side effect of the medication

37
Surveys have shown that these problems are more likely when it is
the man who has Parkinson’s.

Tips for managing these problems


• Talk to your partner about any problems that you are experiencing,
as soon as they happen. Communicating your feelings, especially
any worries or concerns, is a vital part of any good relationship.
Some people find that better communication is all that is needed
to resolve their problems – especially if they communicate early on
and don’t allow things to deteriorate.
• Many people say that keeping a sense of humour helps dispel
some of the tension and keeps things in perspective.
• There are a number of ways to tackle the physical problems that
can occur as a result of having Parkinson’s, e.g. changing the
times of the day that you have sex, trying different positions and
adapting your approach to sex.
• Discuss the problems you are having with your doctor or PDNS.
They may be able to refer you to other sources of help, e.g.
relationship counsellors, psychosexual therapists or counselling
organisations, such as Relate. Accepting the need for this type
of help and asking for it can be very difficult, but try not to be
embarrassed. Healthcare professionals are used to dealing with
such concerns and you won’t be the first to ask!
• Above all, communicate. Your approach to sex may have to be
slightly different with Parkinson’s, but the condition itself shouldn’t
stand in the way of an enjoyable and fulfilling sex life.

Want to know more?


• See the PDS booklet Sex, Intimate Relationships and Parkinson’s
(code B034) for more information.

38
I am single. How will Parkinson’s affect any
future relationships I may have?
There is no reason why future emotional, sexual and intimate
experiences shouldn’t be positive. What you tell prospective sexual
partners, and when, depends entirely on what you feel is right for
you. Most people in a similar position have said that honesty seems
to be the best policy. As already stated, some of the likely causes
of problems in sexual and intimate relationships are common to
everyone – whether they have Parkinson’s or not.

You may find it helpful to talk to other single people with Parkinson’s
at local PDS branches and YPN groups, or via the PDS online forum
at www.parkinsons.org.uk

39
My life with Parkinson’s
by Catherine Benford, who was diagnosed with Parkinson’s
in 1996 at the age of 25

My mum and I were asked into the consultant’s office and it was
there that my life changed for ever. “You’ve got Parkinson’s disease,”
he said. “I’ve got what? At 25, I’ve got what?” I replied.

As my mum sighed with relief, knowing that I wasn’t terminally ill,


I could hear nothing and was in shock. We headed home to tell
my dad and sister. There were lots of tears. We had been told
something that would change our lives for ever and were all in
complete shock. We wanted to carry on as if nothing had changed
… for a short time anyway.

Years later, my Parkinson’s has progressed. I can be off work for


months at a time, but life is what I make it. I have been through a
divorce and a miscarriage, and have experienced things in life that
most people could never imagine. There’s no denying, living with
Parkinson’s is hard. But each day is different and although I can get
low times, through everything I stay strong.

In February 2006, I met a person who I never dreamt existed for me.
He has changed my life completely. He is my perfect partner. He’s
kind and loving, he is there every step I take, and supportive of my
every decision. We married in September 2007 and now have a little
boy – Jacob Isaac.

It is really hard to imagine the future – I don’t know what it holds,


because the condition is so different for everyone. I live for today,
and cram as much into life as I possibly can. I just have to live with
my Parkinson’s and that’s what I intend to do.

40
Being a
parent

How do I talk to my young children


about Parkinson’s?
Many younger people with Parkinson’s have young or teenage
children who will have questions about Parkinson’s and how it
is likely to affect their parent in the future. After diagnosis, many
parents wonder whether or not to tell their children about their
illness; and if they decide to tell them, what is the best way to do
this and how much to say.

These tips from parents and psychologists may help:


• Be open, honest and realistic with them. Don’t hide the condition
from your children, as they may worry more about what they don’t
know than what they do. They may reach their own conclusions,
which in some cases may cause them more anxiety than the truth
would.
• Make the explanation simple and appropriate to their age.
• Be specific and clear in describing the condition and don’t
assume anything. You may know it is not contagious, but are
they 100% sure?
• Remember that children need to feel that they have some control
over how much information, they receive and when. Don’t give

41
them too much information but make sure they know that they
can discuss Parkinson’s with you and ask questions at any time.
• Reassure your children that it is extremely unlikely that they will
develop Parkinson’s.
• Seek further advice and support if you are finding it hard to tell
them, or are worried about their reaction or how they are coping
with Parkinson’s in the family.
• Talk to other parents in a similar position through the YPN.

Want to know more?


• See the PDS information sheet Talking to Children about
Parkinson’s (code FS66).
• The chapter on young-onset Parkinson’s in the book Parkinson’s
Disease: A Self-Help Guide for Patients and their Carers by
Marjan Jahanshahi and C David Marsden includes a section
on children and their reactions to parental illness.
• PDS publications for children and young people include:
– a range of books for children with a parent or grandparent
who has Parkinson’s
– Parkinson’s: The Facts – a guide for young people aged
11–17 years
• I’ll Hold Your Hand, You Won’t Fall Down: a Child’s Guide to
Parkinson’s Disease is a book written by Muhammad Ali’s
daughter, Rashida.

42
Does Parkinson’s affect a man’s ability to
father children?
We are unaware of any scientific research looking at male fertility
and how Parkinson’s might affect this. However, we know of several
men with Parkinson’s who have fathered children since being
diagnosed with the condition. This includes Michael J Fox, the
well-known actor and Parkinson’s campaigner.

What effects do Parkinson’s have on


pregnancy in someone with the condition?
The very small number of cases of pregnancy in Parkinson’s
reported in medical journals means that there are problems with
predicting what happens to women with Parkinson’s when they
become pregnant. The available evidence from recorded cases is
not particularly helpful, in that it simply states that some women’s
symptoms worsen and some do not. It is encouraging to note,
however, that the majority of the cases written about ended in
successful, full-term delivery of healthy babies.

The following advice may be useful in coping with some of the


problems encountered by women with Parkinson’s who are pregnant:
Balance problems – consult your health visitor for advice on posture
and, if necessary, a physiotherapist for advice regarding balance
and the use of a walking aid, if required.
Slowness of movement – allow more time to perform daily tasks.
Remember, you will probably feel more fatigued than usual, so this
will have a dual benefit.
Nausea and vomiting – consult your GP or hospital team for advice.
It is advisable to point out to them (as they may not be aware)

43
that Maxalon and Stemetil should NOT be given to anybody with
Parkinson’s. In addition, small, frequent meals six to eight times
daily are advised, as well as avoiding high-fat and very spicy foods.
Starchy foods, such as bread (toast) or dry breakfast cereals, can
help with nausea.
Constipation – remember to drink plenty of fluids and have a diet
rich in fibre to reduce the risk of becoming constipated. Remember,
caffeine in drinks such as tea, coffee and cola can make you want
to pass water more often and should be avoided.
Fatigue – try to get eight hours sleep every night, and rest during
the day when possible.

Any woman with Parkinson’s who becomes or wishes to become


pregnant should discuss this with her neurologist, obstetrician and
PDNS at the first opportunity.

Want to know more?


• See the PDS information sheet Pregnancy and Parkinson’s
(code FS19).

I am a single parent with Parkinson’s.


How will I cope?
Being a single parent can be a challenge at the best of times, but
when you have Parkinson’s, it can be a real test. However, many
people do manage this situation well and there is no reason why
you shouldn’t too.

Many lone parents find it helpful to exchange ideas and tips


with others in a similar position through the YPN. There are also
organisations to support lone parents.

44
Our lives with Parkinson’s
by Andrew Charles, who was diagnosed with Parkinson’s
in 2006 at the age of 42

I saw my doctor because of stiffness in the left leg and arm – I was
referred to a specialist neurologist who diagnosed Parkinson’s there
and then. After this, I fell into a deep depression that lasted about six
months. It took over my life, turning me into a recluse: unshaven not
wanting to do anything; in a zombie state.

I have three girls, who were aged 14 to 17 at the time. My youngest


took it the hardest: “Why my dad? He hasn’t done anything to
hurt anybody”. But with the help of booklets, we got a better
understanding, bringing my family closer. My girls would be my
minders, looking out for me when we went places.

There is no easy way around Parkinson’s, but tell you children – don’t
hide it, don’t bury your head in the sand. Your life will change, but
through the PDS I have many more friends than ever.

and Jennifer Charles, who was 16 when her father was


diagnosed with Parkinson’s

When I found out that my father had Parkinson’s, I was very unsure
about what it was and how it would affect him. Once my parents
explained to me what Parkinson was, I was very upset and didn’t
know what to say or do to help my father. But in a short time, I learnt
that he hadn’t really changed, except he would have a bad day now
and again. On these days, I try to help out as much as possible.

The main way I found to deal with the feelings I had about Parkinson’s
was to just talk to my dad. The overall effect Parkinson’s has had on
the family is that it has brought us closer together, but it was very
hard at first.

45
Living on your
own

Will I be able to manage my Parkinson’s


if I live on my own?
Many people with Parkinson’s live alone through choice or
circumstance. There can be advantages, such as being your
own free agent and not having to worry about being responsible
for another person. However, you may wonder how you are going
to cope.

Although some aspects of your lifestyle may become more


challenging, there is no reason why you cannot continue to live on
your own, provided that you have the appropriate support to help
you with the activities that you find difficult.

Physical difficulties
You may have physical problems that compromise your
independence and make managing at home harder. These can often
be overcome or made easier and safer by adapting them in some
way or by using aids and equipment. An occupational therapist can
advise further. Support may also be available through your social
services department.

46
Finances
Living alone can be difficult financially, whether you are working or
managing on a pension or disability benefits. Make sure that you are
receiving the financial support that you are entitled to. Remember
that even if you are still working, you may be entitled to certain
benefits if you live alone, such as reduced council tax.

Emotions
Anyone who is living alone and has a long-term health condition,
such as Parkinson’s, can be particularly prone to depression,
loneliness and isolation, unless they have a strong network of
family and friends to support them. If you find it difficult to cope
emotionally, don’t struggle on alone – contact your doctor, PDNS or
the PDS Helpline for support.

Many people who live on their own find much-valued friendship


and support through PDS local branches, YPN groups and internet
discussion groups, such as the PDS online forum.

These tips may also help:


•Don’t assume that living alone is impossible now that you have
Parkinson’s – many people manage very successfully with the
right support.
• Discuss any difficulties you are experiencing as a result of living
alone with your GP, hospital consultant or PDNS.
•Seek advice from an occupational therapist about any activities
around the house, at work or at leisure that you are finding
difficult.

47
•Check that you are receiving all the benefits you are entitled to.
The PDS publishes a range of rights and benefits information
sheets and the PDS Helpline has a dedicated advisory officer for
benefits and employment. Your local Citizens Advice Bureau can
also advise further.
• Make the most of any existing support systems you have, such
as family and friends.
•PDS branches and YPN groups can offer you friendship and
support.
• Share your experiences with others in a similar position
through the PDS online forum – www.parkinsons.org.uk/forum
– and other internet support sites.
•Take advantage of events, activities and support that may be
available to you locally. More information is available from your
local library, local paper and Citizens Advice Bureau. The PDS
website gives details of local Parkinson’s support and upcoming
events.

Want to know more?


• See the PDS information sheets Living Alone with Parkinson’s
(code FS29) and Depression and Parkinson’s (code FS56).

48
Communication

What effects does Parkinson’s have on


communication?
Problems with handwriting can be one of the earliest signs of
Parkinson’s and are usually caused by tremor and lack of
co-ordination. Writing can become small, cramped and difficult
to read.

About 50% of people with Parkinson’s also develop difficulties


with speech and non-verbal communication. Speech may become
slurred or monotonous with lack of variation and the voice may lack
expression and volume.

Facial expressions and body language can also be reduced through


muscle rigidity and slowness of movement. As a result, expressions
such as smiling or frowning may become more difficult, body
language may lack spontaneity, and there may be an absence of
gestures such as nodding. The loss of these communication skills
can have a profound impact on the relationships of a person with
Parkinson’s (see the section ‘Relationships’ for more information).

Adjusting medication can sometimes help with some


communication problems. A speech and language therapist can
advise on speech and non-verbal problems, and an occupational
49
therapist (see the section ‘Independence and daily living’) on
handwriting problems.

Want to know more?


• See the PDS information sheets Communication (code FS06),
Handwriting and Parkinson’s (code FS23) and Speech and Language
Therapy (code FS07).
• Some people also find it helpful to keep a PDS Alert Card (code
M14) in their purse or wallet for times when they have difficulties
communicating. This is a small, credit card-style card which
explains that the person carrying it has Parkinson’s and may
have difficulties with communicating.

How can a speech and language therapist


help me with communication problems?
Speech and language therapists specialise in assessing and treating
the communication and swallowing problems that people with
Parkinson’s often experience. This may include speech problems,
non-verbal communication (including facial expression and body
language), and eating, swallowing and drooling problems.

They may suggest techniques involving breathing and posture,


as well as exercises, to improve communication, swallowing or
drooling. They can also advise on activities that you may find
particularly difficult, such as talking on the telephone.

Referral is often via your GP, hospital consultant or PDNS,


although in some places you can refer yourself to an NHS speech
and language therapist via your local hospital or health centre.
They may also work privately.

50
Want to know more?
• See the PDS information sheets Communication (code FS06),
Handwriting and Parkinson’s (code FS23) and Speech and
Language Therapy (code FS07).

What tips can you give me to improve


my handwriting?
Many people have problems with handwriting, which can be one of
the first symptoms of Parkinson’s. Some people find that when they
start writing the size of their handwriting is normal, but as they write
across the page the writing becomes smaller and smaller (known
as micrographia). The writing may be ‘spidery’ and difficult to read.
Some people also find writing impossible because their hand shakes
too much.

An occupational therapist can advise you further on handwriting


problems. Practical solutions might include:
•writing with a thick or padded pen, pencil or felt-tip pen
• wearing a weighted cuff to dampen down the tremor
• using a clipboard or non-slip mat to prevent the paper slipping
•after writing a line, stopping for a moment, relaxing, breathing
deeply, stretching (using wide arm movements), pushing down
through the arms and then starting writing again
• using a dictaphone machine or tape recorder to verbalise
messages rather than writing
• using a computer, electronic typewriter or word processor
• using voice recognition software

51
Want to know more?
• See the PDS information sheet Handwriting and Parkinson’s
(code FS23).

How could a computer help me?


Computers can help people with Parkinson’s in a number of ways,
such as:
• with day-to-day correspondence, especially if their handwriting
is affected
• in employment
• to keep in touch with friends and make new ones through internet
forums
• to find information about Parkinson’s and other subjects of
interest
• for online banking and shopping, which can be particularly helpful
for people with severe mobility difficulties

Further advice can be obtained from an occupational therapist or


AbilityNet, a voluntary organisation that aims to make computer
technology accessible to disabled people.

All kinds of computer courses are usually available from local adult
education facilities and colleges, as well as from learndirect, an
adult education service that provides online courses and has a
network of centres across the UK, where you can find support.

52
How do I tell people I have Parkinson’s and
what do I say?
Telling people that you have Parkinson’s can be a daunting task.
Finding the words can be difficult, especially if you are worried
about the reaction you are going to receive. In addition, Parkinson’s
can affect communication and make discussing the condition with
people harder. Some people also worry that if they let people know
they have Parkinson’s, they will then be defined by other people’s
perceptions of the condition or be identified only in terms of it.

Who you tell and what you tell them depends very much on your
own particular circumstances, and the situations that you find
yourself in where telling someone you have Parkinson’s may
become important.
• Tell at least one person close to you. This will give you someone
to talk to about your Parkinson’s who may be able to help you tell
other people.
• Choose when and how you tell people carefully. You may want
to gather everyone together and tell them all at once, or you may
prefer to tell people gradually as the need arises. Some people
find it easier to tell people in a letter or an email, rather than face-
to-face.
• Practise what you want to say in advance and prepare yourself by
thinking through the possible reactions you may get and how you
might feel.
• Talk to other people with Parkinson’s about how they handled this
issue. They may be able to provide you with tips. You can contact
them via local branches, YPN groups or the PDS online forum.

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Want to know more?
• See the PDS information sheet Telling People about Parkinson’s
(code FS88).

I sometimes feel reluctant to go out and


socialise because I am worried about how
I am going to cope. Any tips?
It is common to feel like this, but it is important that you try to
continue to lead as active and normal a life as possible, despite
having Parkinson’s. You may find that more effort is required and that
some activities have to be adapted to make them easier, but with a
bit of planning, you should be able to overcome most difficulties.

If embarrassment is the problem, many people find talking to others


with Parkinson’s at a local PDS branch or YPN group makes a
big difference. They can also share tips and ideas for overcoming
particular problems with socialising.

You may want to ask yourself the following questions:


People
•If you are going out with other people, how much do they know
about your condition?
• Do they need to know that you have Parkinson’s?
• Will they know how to assist you if required?
• How much support will they require from you?
Venue
• Have you been there before?
•Do you need to know if it’s accessible?

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Transport
•Have you made arrangements to return home at a specific time?
• What if the people that you are with decide to return home early,
but you decide that you want to stay until late or vice versa?
• Do you know how you are getting home?
Staying over
•Ended up staying the night when you hadn’t planned to? Is there
anyone who needs to know?

Going out essentials


Medication – take more than one day’s supply with you, just in
case. Also, keep an up-to-date list of the current medication you are
taking in your wallet or purse, in the event of an emergency.
Mobile phone – make sure that your phone is charged and that you
have an ICE (in case of emergency) number in the phone book.
This is the number of the person that you have chosen for the
emergency services to contact if they need to.
Large crowds – if you experience difficulties with negotiating large
crowds, try to get someone to walk immediately in front of you to
create space.
Theatres – book seats at or near the end of a row. Your legs will
have more room for manoeuvre. You can get up and down without
disturbing anybody and make a quick exit if you need to.

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My life with Parkinson’s
by Nina Temple, who was diagnosed with Parkinson’s in 2001
at the age of 44

Before I was diagnosed with Parkinson’s, I remember feeling


generally under the weather. I put it down to stress, but then my
handwriting changed. One day in the autumn of 1999, I had to sign
a pile of letters and I noticed that every time I got to the ‘m’ in my
surname, I just couldn’t do it. This was followed by a tremor in my
arm in certain situations.

I still didn’t go to the doctor for a long time. I don’t know why really
– partly just not having had the habit of focusing on myself and
also fear of hearing something I didn’t want to hear. When I was
diagnosed I didn’t find the experience very supportive – it was just
“yes, you’ve got Parkinson’s and here are the drugs for it”. I was in
a state of shock and disbelief. I also felt a certain shame for having
been healthy and then getting remarks from people about my tremor.

I started to avoid social situations, but in the end, decided it was


better to face it. I had a party and told everyone in one go. It was
a good party and I made a speech and managed to get through it
without crying, although most of my friends were crying. It was a
very positive thing for me. My husband and children have been very
supportive all along.

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Independence
and daily living

I want to remain as independent as possible.


How can a physiotherapist help me?
Physiotherapists are trained health professionals who use physical
treatments, including exercise, to help treat people of any age
who have physical problems because of illness, ageing or injury.
The methods they use are various but might include exercise,
manipulation, heat and hydrotherapy.

Physiotherapists will be particularly interested in assessing and


treating the effects that Parkinson’s can have on mobility – including
gait, posture, balance, activities involving transfers such as getting
in and out of bed, and dexterity. They may also be involved in
managing non-motor symptoms, such as pain and sleep.

In the early stages of the condition, maintenance of your functional


ability through exercise and relaxation will be a physiotherapist’s
main focus. As Parkinson’s progresses and the symptoms tend
to become more pronounced, they may also advise you on ways
of managing particular difficulties you are experiencing, such as
freezing, balance problems, falls and immobility.

Referral to a physiotherapist is usually via your GP, hospital consultant


or PDNS. Some also work privately. If you want to consider this
57
option, make sure that they are properly trained – they will have MCSP
(Member of the Chartered Society of Physiotherapy) after their name.
You also need to ensure that you see a physiotherapist who specialises
in neurology or care of older people and has some experience of
treating people with Parkinson’s.

Want to know more?


• See the PDS information sheet Physiotherapy and Parkinson’s
(code FS42) for more information.
•The Charted Society of Physiotherapy can give I want to remain
as independent as possible. How can a physiotherapist help me?
Please find their details in the Useful contacts section at back of
this booklet.

How can an occupational therapist help me?


You may find that you have to make many life changes after a
diagnosis of Parkinson’s. Occupational therapists have expertise
in helping you to adapt to these changes. They help you to get the
most out of life by being able to carry on with the activities that are
important to you. These include:
• personal care – getting dressed, cleaning teeth, shopping,
washing and bathing
• productivity – paid or unpaid work, and housework
• leisure – sports, hobbies and social life

Occupational therapists help people with Parkinson’s and their


families to identify the problems that are affecting their lifestyle, by
looking at their particular physical, social and emotional needs.

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When these difficulties have been identified, occupational therapists
can assist in the following ways:
• They can give advice on the way that the condition can affect
everyday life.
• They can work alongside the person and their family to plan the
most appropriate daily or weekly routines that will enable them to
carry out important activities.
• They can teach the person and their family new strategies for
coping with the physical and psychological problems that may
affect everyday life.
• They can advise on equipment to use at home or at work to
enable a person to continue to carry out their everyday activities.
• They can provide advice, information and support to enable a
person to use transport, community and leisure opportunities to
the full.
• They can help a person maintain and improve their social life
through planned, staged support programmes.

Occupational therapists work in hospitals and various community


settings. Home visits for assessment and advice are a major part
of their work. Your GP, specialist or PDNS can refer you, or in some
areas you can refer yourself by contacting your local social services
department. Some occupational therapists also work in private
practice. If you go privately, you need to make sure that they are
state registered (they will have the letters SROT after their name)
and have experience in working with people with Parkinson’s.

59
Want to know more?
• See the PDS information sheet Occupational Therapy and
Parkinson’s (code FS97).
• To find a private occupational therapist, contact Occupational
Therapists in Independent Practice.
•For more information on the work of occupational therapists,
contact the British Association of Occupational Therapists.

What equipment will I need?


This depends on the particular problems that you have. You may not
need any equipment. However, a wide range of aids and equipment
is available to help people who have disabilities or ill health. These
can be very useful in helping people to manage particular situations
or problems. However, it is important to stress that they are not
always the answer and can be very expensive.

Before purchasing any equipment, you should obtain an


assessment from the relevant therapist, who can assess your
needs and then make recommendations. Although these
recommendations may include equipment, they may also include
other things such as exercises, suggesting ways of doing something
to make it easier to do, or treatment. Therapists will only suggest
equipment if they think it will help with the particular problems you
are experiencing and they should be able to advise you on suppliers
and funding. Without this assessment, you run the risk of spending
considerable sums on equipment that may prove to be unsuitable or
that could have been purchased more cheaply.

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What kind of therapist you see depends on what particular activity
you need help with. There is some overlap between the disciplines,
although they often work together as part of a team.
In general:
• an occupational therapist advises on the activities of daily living,
such as washing, bathing, dressing, eating, reading and leisure
• a physiotherapist advises on mobility problems inside and outside
the home – this is complicated, however, by the fact that an
occupational therapist will often also advise on equipment
• a speech and language therapist advises on anything to do with
communication and also on swallowing problems

Who you see can depend on the arrangements that exist in your
local area for these services. In some areas, a physiotherapist deals
with equipment that an occupational therapist would deal with in
another area. Your GP, hospital doctor, PDNS or local Patient Advice
and Liaison Service should be able to advise you further.

Who pays for the equipment depends on the type of equipment


in question, your particular circumstances (e.g. whether you are
receiving benefits) and the funding that is available in your local area
or from other sources. The therapist, your GP or hospital doctor
should be able to tell you what is available.

Want to know more?


• See the PDS information sheet Equipment and Disability Aids
(code FS59).
•The Disabled Living Foundation has a range of information sheets
on equipment and centres where you can obtain advice from
therapists and try out items out before you buy.

61
What adaptations will I need to make to
my home?
Some people find that they need to make repairs or adaptations to
their home to make living with Parkinson’s easier. This might include
improving access in and out of the front door by providing a ramp,
refitting a bathroom to make it easier to manage, or fitting a stair lift.
Before going ahead with any work like this, you should seek
professional advice from an occupational therapist. They can
assess the difficulties you are having and make recommendations
accordingly.

Another source of information and advice is Care & Repair, an


organisation, operating in England, Scotland and Wales that
promotes and develops housing policies and initiatives to enable
older and disabled people to live in their own homes independently.
It produces a useful guide, In Good Repair, which provides
information on repairs, adaptations, funding and finding a reliable
builder or tradesman.

What help can I obtain from social services


to help me manage at home?
Your local social services department (Social Work Department in
Scotland and Department of Health and Social Services in Northern
Ireland) is responsible for arranging support services for people
who require help to live independently in the community, because of
their age, illness or disability. Social services must assess anyone who
appears to fit these categories in order to determine what services
should be provided to them.

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They do this through what is known as a ‘needs’ or ‘care’
assessment, usually carried out by a member of the social services
team, such as a care manager or social worker.

The assessment may also identify healthcare requirements that


are the responsibility of the local health authority rather than social
services, e.g. a district nurse visiting regularly to administer an
injection. Where such needs are identified, the assessor will inform
your GP or another member of your primary care team.

In complex cases, several different health professionals may


become involved in the assessment, including therapists, nurses
and the GP. The assessments generally take place in the person’s
own home and should take into account any personal preferences
and requirements that they have, as well as their social and cultural
background.

The assessment enables social services to identify what the person’s


particular needs are and what services might help them. These may
be provided by social services directly or by private agencies and
voluntary organisations. Procedures for assessing and providing
services vary and depend on the particular local authority.

Although the assessment will be free, who pays for any services
subsequently recommended depends on your financial situation
and the eligibility criteria for service provision in your area.

This is usually means-tested based and depends on a financial


assessment, which is often completed by the care manager or
social worker at the same time as the needs or carer’s assessment.
If you do not provide this information, social services may assume
that you can pay the full cost of the services.

63
The local authority may be able to offer you financial support if you
need it, provided that you meet its eligibility criteria and should also
be able to advise on other sources of financial help.

How can I ensure my safety?


Recommendations for safer surroundings and habits have to be
balanced against your individual lifestyle choices and the amount
of risk you want to accommodate in your life. Generally speaking,
there are two areas where safety issues are important for people
with Parkinson’s:
•Preventing falls or other injuries and managing day-to-day
activities safely – in and out of the home
•Reducing your vulnerability, especially to bogus callers and
unscrupulous sales people
A physiotherapist can advise further on falls prevention and
management, and an occupational therapist can provide advice
on safety in and out of the home.

This might include:


• using non-slip mats in the bath or shower
• rearranging furniture to make moving around your house safer
• checking that electrical leads don’t cross walkways
• fixing loose carpets and floorboards
• installing grab rails alongside stairways and in places that you
find particularly difficult to negotiate
• using equipment or disability aids to make particular activities
easier and safer

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If you live alone or spend much of your day on your own, you may
find it helpful to register with a community alarm system. These are
run by many local authorities, as well as by voluntary organisations
such as Age Concern and Help the Aged, and are not just available
to older people. In the event of an accident, you can push a button
on the telephone or a device worn around the wrist or neck to
summon help from a 24-hour response centre. A fee is charged for
most of these systems, but there are usually exemptions for some
people on low incomes.

Want to know more?


• See the PDS information sheets Equipment and Disability Aids
(code FS59) and Falls and Parkinson’s (code FS39).
• Your local social services department should be able to advise
you on community alarm schemes in your local area.

65
Diet and
exercise

What advice do you have on diet?


Maintaining a healthy diet is important for everyone with
Parkinson’s. In general, no specific diet is required, other than to eat
a well-balanced diet with plenty of fibre, vegetables and fruit.
However, Parkinson’s can sometimes cause problems related to
diet or the practical aspects of eating and drinking. These include:
• a small number of people taking levodopa may find that a large
protein meal slows the effectiveness of the medication
• constipation
• swallowing problems, which can lead to weight loss and
malnourishment
• weight gain, particularly if the person is immobile or does not
exercise
• mobility problems that affect a person’s ability to cook or use
eating utensils
If you are experiencing any of these difficulties, you should discuss
them with your doctor or PDNS. A dietitian can suggest types of
food and drink, as well as ways of preparing and presenting them
to make meal times as trouble free as possible. An occupational
therapist can advise on methods and equipment to make eating and
drinking easier.
66
Want to know more?
• See the PDS booklet Parkinson’s and Diet (code B065) and the
information sheet Eating, Swallowing and Saliva Control (code FS22).

How can I manage problems with protein


and medication?
Some people find that protein (which is found mainly in meat, fish,
eggs, cheese, yoghurt, nuts, beans and pulses) seems to interfere
with the effectiveness of their levodopa medication. These individuals
may benefit from taking their levodopa 45 minutes before meals
(ideally with carbohydrate food like a cracker or biscuit).

A protein redistribution diet, whereby most of the daily recommended


dietary protein is taken in the evening, may be worth considering
if you are experiencing major difficulties. However, this should be
discussed first with your doctor or a dietitian. Do not reduce the
amount of protein you eat – it is vital for the body to renew itself and
fight infection, and reduction can bring dangerous weight loss.

Want to know more?


• See the PDS booklets The Drug Treatment of Parkinson’s Disease
(code B013) and Parkinson’s and Diet (code B065).

How is constipation managed in Parkinson’s?


Constipation is a common problem and has several causes:
• The mobility symptoms of Parkinson’s, such as rigidity and
slowness of movement preventing the bowel from getting the
stimuli to function properly

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• Lack of fibre in the diet because of the problems that some people
have with chewing and swallowing food
• Some anti-Parkinson’s medications

If you are experiencing any problems with your bowel or bladder,


discuss these with your doctor or PDNS, who may refer you to a
dietitian for further advice. Self-help might include increasing your
intake of fluids and fibre-rich foods (NB: too much bulk from fibre
can increase constipation) and more exercise. Don’t use laxatives
without medical advice.

Want to know more?


• See the PDS information sheet Constipation and Parkinson’s
(code FS80) and booklet Looking After Your Bowel and Bladder
(code B060).

How are swallowing problems treated?


Some people experience swallowing difficulties, usually when they
have had Parkinson’s for several years. If you are experiencing
problems, you should discuss these with your doctor or PDNS,
who may refer you to a speech and language therapist.

Techniques they might suggest include modifying your posture,


improving breathing techniques or strengthening facial and tongue
muscles.

Want to know more?


• See the PDS information sheet Eating, Swallowing and Saliva
Control (code FS22).

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Can I drink alcohol?
If you’ve always enjoyed a drink, there’s no reason why you can’t
continue to do so. Taken in small amounts, alcohol shouldn’t
interfere with your medication, but do avoid drinking excessive
amounts.

However, if you have just started a new drug regimen, extra caution
should be taken and you should minimise alcohol intake until your
body has adjusted to the change in medication. It may be worth
discussing this further with your GP or PDNS, if you have one

Can vitamin supplements help Parkinson’s?


There is no clear evidence that taking extra vitamins, minerals or
antioxidants will help Parkinson’s symptoms or stop its progression.
A healthy, well-balanced diet should provide all that you need. If you
are concerned, you should discuss this further with your doctor or
PDNS. Don’t try any supplements or herbal medicines before doing
this, as some can cause severe side effects when taken in large doses
and/or may be contraindicated with the medication you are taking.

Some vitamins, including antioxidants, have been or are the


subjects of Parkinson’s research but the results to date have been
inconclusive.

Want to know more?


• See the PDS booklets Parkinson’s and Diet (code B065) and
Complementary Therapies and Parkinson’s (code B102).
• See the PDS information sheets Antioxidants and Parkinson’s
(code FS67) and Coenzyme Q10 (code FS74).

69
What exercise should I do?
Whatever your age, and whether you have Parkinson’s or not, your
body works on a ‘use it or lose it’ basis, so you need to exercise
and keep moving regularly. For people with Parkinson’s, this is
especially important as muscle tone alters and becomes stiff. This in
turn will restrict the range of movement in their joints, which in time
may lead to injury and pain.

The extra effort needed can add to a feeling of tiredness, so the


person with Parkinson’s doesn’t feel like doing much, which can
lead to a vicious cycle and a loss of mobility. As difficulty in moving
is a major symptom of Parkinson’s, you should try to prevent this
happening for as long as possible.

Different types of activities can help to keep your body physically


fit by: strengthening muscles and bones; keeping you flexible;
preserving your balance and stopping you falling; keeping your
heart strong and helping you to relax. A combination of all these is
best, but choosing any will benefit you physically and mentally.

Tips to keep you motivated and on track to maintain your


fitness level
• Look for an activity you enjoy – if something is fun, you are most
likely to stick to it.
• Try to find something local so you are not hampered by travel.
• Make it more sociable by joining a group.
• Where possible, find a time of day that suits you best – e.g. when
you are less tired or when you have company.
• Age and illness are no barriers to improvement. Check with your
GP first if you are worried.

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• Don’t become frustrated if there are days when you don’t do as
well as normal – we all have off days – so persevere and you will
notice a change for the better.

Can I still play sports?


Yes. Many people with Parkinson’s are involved in active sports and
activities such as racquet sports, bowling, sailing, skiing, swimming
and dancing. There are also a number of ‘low-key’ exercise options
to keep you flexible and active, such as yoga, Pilates, tai chi,
walking, gardening, golf and daily stretches. Participating in any of
these activities can also offer social opportunities and help alleviate
the depression that many people feel.

If you are having problems with particular exercises or sports, a


physiotherapist can advise you further. There are also many sporting
associations that can provide help and advice to people who have
disabilities.

Want to know more?


• The PDS booklet and DVD Keeping Moving (code V011) provides
a set of exercises, put together by two physiotherapists, that can
be done at home.

I find Parkinson’s makes me feel very tired.


Why is this?
Many people with Parkinson’s experience an overwhelming sense
of tiredness, lack of energy and a feeling of exhaustion, which may
affect physical, intellectual or emotional activities. It can be the first

71
symptom for some people, but is not specific to any stage of the
condition. Causes may include the following:
• The day-to-day variability is characteristic of Parkinson’s. You may
find that after feeling quite fit and able one day, you feel too tired
to do much the following day.
• For people with Parkinson’s, activities that were previously
automatic now require conscious effort.
• Symptoms such as tremor and rigidity can put considerable stress
on the muscles, which have to work harder and often against
each other in order to initiate movement or undertake a task. The
muscles can become fatigued very quickly and easily as a result.
• Stress can make the symptoms worse and increase feelings of
fatigue.
• Energy may fluctuate throughout the day as a result of the timing
and dosage of medication. As a consequence, you may feel more
energetic and able to handle certain tasks at specific times of
the day.
• Sleep and night-time problems.
• Depression.
• Many people find it difficult to concentrate for long periods of time
without a break.
• There may be co-existing conditions such as anaemia and blood
pressure problems.

Tiredness can make people less active, which in turn affects


their physical and emotional wellbeing and sometimes leads to
depression, boredom and isolation.

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Identifying the source of your fatigue is the first, important step,
so discuss this further with your doctor. Adjustments to medication
or the use of drugs that have a stimulant effect can sometimes
help. Any depression and sleep disorders also need to be treated.
Self-help strategies may include developing good sleeping habits,
improving your diet and making sure you exercise regularly.

Be aware of your capabilities and know your limitations. Achieving a


balance between rest and activity will help you to overcome fatigue.
Pacing yourself is a key ingredient in this, as is taking regular rests
and asking for help when you need it even if you want to remain as
independent as possible. Don’t try to do too many activities at one
time. Planning in advance is also a good idea – for instance, if you
know that you are going to be very busy one day, make sure the
next day is quieter so you can recover.

A physiotherapist can help you manage any mobility problems that


are contributing to your tiredness. An occupational therapist can
advise on ways of making the activities of daily living easier, which
in turn may lessen your fatigue.

Want to know more?


• See the PDS information sheets Fatigue and Parkinson’s (code
FS72), Sleep and Night-time Problems in Parkinson’s (code FS30)
and Depression and Parkinson’s (code FS56).

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My life with Parkinson’s
by Sue Lily, who was diagnosed with Parkinson’s in 1994
at the age of 43

I will never forget the day when I was diagnosed with Parkinson’s.
I was 43 at the time, and had a good job that I enjoyed and a happy
family life. To start with, I don’t think the true impact of all the
implications of Parkinson’s sunk in. I did not feel annoyed or bitter,
just shocked by what was ahead of me. The one thing I did know
was that I was not going to give up without a fight.

My one great lifesaver has always been our local PDS branch, which
gives all members great support. Everyone works hard fundraising
and organising events to make the members lives more enjoyable.
We have met some wonderful people and made some great friends.

I am fortunate enough, many years later, to still be quite active.


I play golf twice a week, cook, clean, shop, garden and virtually
lead a normal life. I never consider that I cannot do something, but
work my activities around my Parkinson’s. I fit my most energetic
activities in during the morning and do other quieter pursuits later in
the day. I always try to rest for 30 minutes in the afternoon as I find
this really gives me a boost. My theory is that it allows my brain to
rest and regenerate itself. I find when I don’t play golf or have any
physical activity I feel far worse.

I look on my Parkinson’s as a great challenge and try to outwit it in


every way. I believe that the most important thing is to keep active.
Remember, accommodate Parkinson’s, but never surrender to it.

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Travel and
leisure

Will I be able to continue to drive?


Having Parkinson’s does not necessarily mean your driving licence
will be affected, although you may be required to have a medical or
take a driving test.

Once you have been given a diagnosis of Parkinson’s, you have a


legal obligation to inform:
• UK – Driver and Vehicle Licensing Agency (DVLA)
• Isle of Man – Department of Transport
• Guernsey – Driver and Vehicle Licensing
• Jersey – the parish that issued the licence
However, we recommend that you discuss driving with your GP
or consultant before approaching the relevant authority. Once
informed, they may contact your doctor to confirm your fitness to
drive and, if positive, you may be issued with a one-, two-or three-
year renewable licence.

Many people with Parkinson’s continue to drive for years after


diagnosis, if supported by their doctor. However, some people
find that their medication makes them drowsy and, therefore,
unable to drive.

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All drivers have a responsibility to ensure that they are medically
fit to drive at all times. Any person who knowingly drives while
unfit may invalidate their insurance cover. It is therefore essential
to inform your insurance company that you have Parkinson’s and
of any other changes in your health that may affect your ability
to drive. It is an offence under the Road Traffic Act 1999 to make
a false statement or withhold information for the purposes of
obtaining a certificate of motor insurance.

Want to know more?


• See the PDS booklet Driving and Parkinson’s (code B064).

Where can I get advice on transport and


travel matters?
The PDS rights and benefits information sheet Help with Getting
Around (code WB10) provides comprehensive information on
various transport and travel issues, including:
• parking – including the Blue Badge scheme
• driving issues
• Motability (a charity that helps people with disabilities use their
higher rate mobility component of disability living allowance (DLA)
or war pensioners’ mobility supplement to buy or hire a car. See
Useful contacts for further details.
• the National Key Scheme for disabled toilets
• public transport – disabled access and concessionary fare
schemes
• wheelchairs
• sources of further advice

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The Royal Association for Disability and Rehabilitation (RADAR)
produces a guide to non-local travel, There and Back, which focuses
particularly on links between different methods of travel – e.g. rail,
road, sea, and air.

Where can I get advice on holidays that are


suitable for someone with Parkinson’s?
Holidays are important for most people, allowing us to take time out
to recharge our batteries, enjoy leisure pursuits and see new places.
Having Parkinson’s shouldn’t change this, although more planning
may be required.

Sources of further information and advice include the following:


• RADAR publishes A Guide for Disabled People – Holidays in
Britain and Ireland, available from the PDS at a cost of £10
including postage.
• Tourism for All – a voluntary organisation that helps disabled and
older people by enhancing their ability to travel and holiday in the
UK and abroad.
• Vitalise – a voluntary organisation that provides breaks for
disabled adults, children and their carers at five accessible centres
in the UK. It also publish guides to other UK and European breaks.
• PDS branches – some run their own holidays, and members may
be able to recommend places where they have stayed or give
you tips.

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What effects do illegal drugs have on
Parkinson’s?
Information is limited, but some illegal drugs are known to cause
drug-induced parkinsonism. In the early 1980s, some drug addicts
in the USA took a synthetic heroin derivative known as MPTP and
developed drug-induced parkinsonism.

Many illegal drugs, such as ecstasy, have acute undesirable effects,


including euphoria, confusion, tremor, unrealistic thought processes
and impaired concentration. People with Parkinson’s can have a
greater risk of psychological side effects (such as hallucinations,
confusion and depression) from many medications. Drugs such as
ecstasy, with its many powerful psychological effects, would be
especially dangerous.

In February 2001, the BBC Horizon documentary ‘Ecstasy and


Agony’ was broadcast in the UK. This programme examined the
experiences of Tim Lawrence, a young man with Parkinson’s, who
found that when he occasionally took ecstasy, the symptoms of
his Parkinson’s disappeared. Although ecstasy could never be
used as a treatment for any illness because of its harmful side
effects, the drug is known to affect the chemical messenger
(neurotransmitter) serotonin. The programme examined the role that
serotonin may play in the development of Parkinson’s and whether
benign components of ecstasy could be isolated to develop
new treatments for Parkinson’s. Research into this possibility is
continuing.

In recent years there have also been reports that cannabis helps
people with multiple sclerosis, another neurological condition. As
a result, many people ask whether cannabis may also be helpful
for Parkinson’s. Research by scientists in Manchester found
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that a cannabis-like drug could be useful in some people for
reducing some forms of levodopa-induced dyskinesias (involuntary
movements). It doesn’t work for everyone and while it can be useful
for motor symptoms, there are likely to be mood-altering effects
in many people that they would not find conducive to leading a
normal life. Cannabis, like ecstasy, shows a way forward for the
development of more useful drugs, and research is continuing.
However, the drug itself is unlikely to be widely used as a medical
treatment.

Want to know more?


• See the PDS information sheet Ecstasy and Parkinson’s
(code FS47).

Do you have any tips for travelling abroad


when you have Parkinson’s?
Many people with Parkinson’s travel overseas on holiday or for
business. There is no reason why the condition should stop you
travelling. Any potential problems can usually be overcome with
careful planning in advance. Advice is also available from several
sources.

The following tips could help ensure as trouble-free a trip as


possible:
• Obtain comprehensive information about the country you
are visiting, including visa requirements, local customs and
regulations regarding taking particular types of medication into the
country (some require import licences).
• Check the health service arrangements for the country you are
visiting and whether there is a reciprocal NHS agreement. This
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can be checked on the travel advice section of the Department
of Health’s website – www.dh.gov.uk. Ensure that you take all the
necessary forms with you.
• Plan your journey well and get help from tour operators, airlines
and travel companies. Most of them are willing to help, provided
that they know in advance that you have Parkinson’s and require
assistance. However, people with Parkinson’s have reported that
some operate quotas on the numbers of disabled people a single
aeroplane may carry. It’s best to check in advance!
• Make sure that you have adequate insurance for your visit,
especially to cover any medical treatment you may need.
• Take a letter from your doctor stating that you have Parkinson’s
and detailing the medication you are taking, as well as any other
appropriate information about your medical care.
• If you are flying, check what arrangements are required if you
need to use syringes or other sharp objects to take your
medication en route.
• Carry your medication in a correctly labelled container as issued
by the pharmacist. Keep it in your hand luggage and take extra
with you just in case. It may not be available in the country you
are visiting.
• Ask your doctor for advice on how to take your medication to
account for any change of time zones.
• Take the contact details of any local Parkinson’s organisation with
you and consider contacting them. They may be able to advise
you on services to help disabled people in their country. It is also
helpful to learn how to say, “I have Parkinson’s disease” in the
local language in case you experience difficulties.

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Want to know more?
• See the PDS information sheet International Travel and Parkinson’s
(code FS28), from which the tips above have been taken. This also
contains a list of organisations and resources that can provide you
with further advice.

What creative activities can I do?


Many people with Parkinson’s enjoy creative activities – including
writing, music and art. These provide pleasure, fulfilment, an
outlet for emotional expression and, when done in groups, social
interaction. An occupational therapist can advise further on creative
activities – either as a new activity or to overcome problems that
you are experiencing with existing interests.

The PDS has worked hard to promote creativity in people with


Parkinson’s. We run the Mervyn Peake Awards – an annual
competition developed in memory of the famous illustrator,
writer and poet who had Parkinson’s – to recognise the creative
efforts and talents of people with Parkinson’s in art, poetry and
photography.

Want to know more?


• The PDS booklet Complementary Therapies and Parkinson’s
(code B102) includes information on creative therapies.
• The book Six Days, by Painton Cowan, discusses the work of
stained glass artist Rosalind Grimshaw, who has had Parkinson’s
for many years and recently produced a large ‘Creation’ window
for Chester Cathedral, which includes a scan of her brain.

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Could music therapy help me?
Music seems to play an important part in the lives of many people
with Parkinson’s. Some find that listening to strong rhythmic music
or a metronome can sometimes improve their walking and help
them overcome freezing episodes. Others find that they are still able
to dance, even if walking is difficult, and that they tire less easily
when moving to music. The most beneficial type seems to be music
with a regular beat and a tune that is familiar or that has some
emotional significance.

Music therapy is the use of music by trained professionals as a


treatment for certain physical and mental illnesses. The music can
be used to improve mobility and speech and to enable people to
relax or to express feelings and ideas. For people with Parkinson’s,
it might help with physical activities, such as walking and upper limb
movements, involuntary movements, tremor and speech problems.
Music therapists often work with these problems with other therapists,
including physiotherapists and speech and language therapists.

A musical background is not needed to enjoy music therapy. The


benefits are most obvious during the therapy sessions. However,
preliminary studies suggest that the effects can also continue
afterwards.

Want to know more?


• The PDS booklet Complementary Therapies and Parkinson’s (code
B102) has more information on music therapy and organisations,
such as Drake Music Project and Excel 2000, which run music-
based courses.

• Your local PDS branch may run exercise groups to music or be


able to advise you further on local activities.
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How would creative writing help me?
Writing can help you discover and explore your thoughts and is
also an opportunity to be creative. How you write and what you
write is up to you. Some people find using a computer easier than
writing by hand. The form the writing takes might include sharing
your experiences with others in letters, emails or internet blogs,
or creating poems, stories or songs. The PDS online forum has a
creative corner, where people can share what they have written.

You don’t have to share it with anyone unless you want to, but many
people obtain inspiration from joining a writing group or taking a
writing course.

Want to know more?


• See the PDS information sheet Writing and Publishing
(code FS76).

I love gardening but am beginning to find


some aspects difficult to manage. What
help is available?
There are many benefits of gardening – exercise, fresh air, creativity
and an interest that you can share with many others.

An occupational therapist can advise you on techniques and


equipment that will make the particular problems you are
experiencing easier to manage. There are also two voluntary
organisations that provide information and support to gardeners
with disabilities: Thrive and the Gardening for the Disabled Trust.

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Some general tips
• Take advantage of the many tools and pieces of equipment
available that have been specifically designed to help gardeners
who have disabilities.
• Raised flower beds can help people who have trouble bending.
• Paths can be widened to give you more room to manoeuvre.
• Buy plug plants rather than seeds if you find the fine finger
movements needed too difficult to manage.
• Gardening is a very popular pastime that brings people together.
If you find something impossible, friends, neighbours, PDS branch
or local garden club members, or community volunteers may be
more than happy to help you.

I get a lot of comfort from my pet, but I


worry about what would happen to it if I
went into hospital or could no longer live
at home. Who can help?
Some people find having a pet a great comfort, making them feel
less isolated. Pets have even been shown to relieve stress and
lower blood pressure. Remember, though, that some can get
underfoot and all pets involve a commitment.

It is natural to be concerned about what would happen to your pet


if you had to go into hospital or move to sheltered housing or a
care home. The Cinnamon Trust is an organisation that aims to help
people over 60 years or terminally ill people stay together with their
pets for as long as possible. With the help of over 4,500 volunteers,

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the services they offer include dog walking for people with limited
mobility and pet fostering.

The Trust is unfortunately not in a position to help those under 60


years, but the following animal welfare organisations may be able to
advise further or have local schemes that can offer help:
• The National Animal Welfare Trust (has an emergency pet care
scheme for members)
• The RSPCA
• Cats Protection
• The Blue Cross
• The Pet Fostering Service Scotland (provides an emergency care
service for anyone of any age living in Scotland who has to go
into hospital or respite care and is temporarily unable to look
after their pet)

There may also be an animal lover in the local branch or YPN group
who might be willing to help.

Want to know more?


• Help the Aged has a useful information sheet on pets.

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My life with Parkinson’s
by Jon Stamford, who was diagnosed with Parkinson’s in 2007
at the age of 49

I hate flying. Don’t get me wrong – I have nothing against flying


itself. I love take off and landing and quite like the bit in between,
especially if the movie is good. No, it’s all the departure and arrivals
stuff I dislike. Even before I was diagnosed, I seemed to have a way
of looking guilty. Now that I stumble and shake, it’s worse.

On many flights, even your shoes have to be scanned. I have learnt not
to wear tight lace-up shoes after taking a fumbling eternity to remove
my shoes in front of a queue of grumbling Benidorm-bound tourists.

US Arrivals is the worst of all. After all, these people carry guns!
After a seven-hour flight to Washington, I stood shaking while trying
my best nonchalant look as the officer scrutinised my passport
– and me. He called his supervisor. There was much whispering
before one looked at my flapping arm and asked me ‘Are you
taking drugs?’ The queue behind me suddenly hushed. Well, my
medication is certainly a drug so the answer would technically
be yes, I thought. Just as I opened my mouth to say so, self-
preservation took over.

“No sir,” I said. They like to be called ‘sir’. “I have a medical condition.”
“Do you have documentation of that?”
“Yes sir,” I said producing my Parkinson’s Alert Card. He read it
aloud and passed it to his colleague. His colleague read it aloud.
They stared unblinking at me for an age it seemed. The silence was
broken by a loud thump as he stamped my passport and smiled.
“Welcome to the US. You have a nice day, y’hear.”

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Work and
money

I am worried about my financial future.


Where can I get advice?
Many people with Parkinson’s and their families worry about money.
There is no doubt that disability or illness can impact significantly on
finances. The concerns you are likely to have and the help available
will depend on your specific circumstances and resources, the
stage you are at in your life and how Parkinson’s affects you.

If you are a younger person, your main concerns may be earning


a living, paying the mortgage, raising your family and saving for a
pension. If you are older, you may have paid off your mortgage and
no longer be working, but may be worried about how you are going
to cope on your pension.

Financial assistance may be available through welfare benefits


or other sources if you meet specific criteria. However, this is a
complicated area on which you need expert advice. Even if you
don’t feel you need any assistance at the moment, planning for the
future is crucial. So try to obtain as much information and advice on
the options or support that may be available to you – now and at a
later date.

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Want to know more?
• The PDS has a range of rights and benefits information sheets.
• The PDS advisory service, available via the Helpline and by email,
has a dedicated Benefits and Employment Adviser who can
answer questions and provide advice on this subject.
• PDS Information and Support Workers can provide one-to-one
benefits advice, including help with filling in forms. To find out
more, contact the PDS Helpline.
• Organisations that can provide you with expert advice include the
Department for Work and Pensions, Citizens Advice, Age Concern
and local authority welfare rights offices

I have handwriting problems and am having


problems making my signature consistent
on cheques etc. What can I do?
Writing signatures on cheques and other official documents is a very
common problem. The difficulty may be writing the signature at all and/
or writing it with any consistency, which can lead to signatures being
queried in shops or by the bank. The recently introduced Chip and PIN
technology that has reduced the number of cheques that most people
write may help you, but some people find they have trouble entering
their PIN number because of unsteady hands and lack of co-ordination.

Talk to your bank about the problems you have – they should be
able to offer alternative arrangements. This might include using a
rubber signature stamp, if you live in a UK country where this is
acceptable, or a card with a photo on it. An occupational therapist
can advise on ways of improving your handwriting.

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Want to know more?
• See the PDS information sheet Handwriting and Parkinson’s
(code FS23).

Will I be able to keep working?


This is a common concern. Work is an important part of many
people’s lives – it can provide a sense of purpose, fulfilment,
personal satisfaction and social interaction. Although many people
with Parkinson’s do carry on working after their diagnosis, how
easy this is to do depends on the type of job you have and how
the condition affects you. Sometimes changes need to be made to
make work easier, or having Parkinson’s may prompt you to take a
different approach to work, such as reducing the hours you work,
changing career or taking early retirement.

If you need or wish to remain in work, it is vitally important to establish


satisfactory treatments with your specialist. With careful management,
some people continue to work for many years. If the work situation
creates practical problems, an occupational therapist can carry out
an assessment and advise on practical solutions. Inevitably, however,
some jobs are more compatible with Parkinson’s than others, so
people who are in jobs requiring high levels of physical stamina and
fast reactions, for example, may need to consider alternatives.
Before making any decisions you should do the following:
• Gather as much information and expert advice as you can about
your particular circumstances, including continuing employment
and the options available to you.
• Discuss your situation with your current employer and see what
support is available from them – many people with Parkinson’s
have found their employer to be sympathetic and keen to help.

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• Obtain advice from the Disability Services Team at your local
Jobcentre Plus office. This might include any adaptations or
retraining that is available. They can also advise your employer.
Financial assistance through the Access to Work scheme may also
be available to help you meet the costs of travel to work and to
purchase equipment that you need to stay in work, retrain or obtain
employment. Your local Jobcentre should be listed in the phone
directory or on the Jobcentre Plus website www.jobcentreplus.gov.uk
• If you belong to a trade union, staff association or professional
body, they should be able to provide you with support and advice.

What can my employer do to help me?


The Disability Discrimination Acts 1995 and 2005 protect you from
discrimination. They cover discrimination against people who have a
disability or have had a disability in the past – defined as ‘a physical
or mental impairment, which has substantial and long-term effects
on a person’s ability to carry out normal day-to-day activities’. It is
unlawful for an employer, of any size, to discriminate against disabled
people in several areas, including employment.

The Act requires the employer to make a ‘reasonable adjustment’ to


the person’s employment or working environment. Examples given
are: making adjustments to the premises; allocating some of your
work to someone else; transferring you to another post or another
place of work; being flexible about your hours – allowing you to
have different core working hours and to be away from the office
for rehabilitation, assessment or treatment; providing training;
using modified equipment; making instructions and manuals more
accessible; using a reader or interpreter; being supervised. If your

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prospective employer is made aware of your disability, adjustments
should begin at the recruitment stage.

You do not have to pay for any part of a reasonable adjustment.


Your employer can get support from the Government Access to
Work scheme, operated by your local Jobcentre Plus.

Want to know more?


• See the PDS’s Employment Guide (code B103).
• Contact the Department for Work and Pensions or the Equality
and Human Rights Commission for more information.
• Seek advice from your trade union, staff association or
professional body.

I have decided to stop working. What advice


is available to help me with this process?
If you decide to stop working, carefully consider the emotional,
practical and financial considerations involved first. Don’t rush into
a decision – give the treatment time to settle down. Even when
people are happy with their decision to retire early, it is worth talking
to employers and professional or trade organisations to establish
the most favourable terms and timing. Some firms encourage their
employees to attend courses on preparing for retirement and some
local further education colleges also run pre-retirement courses.

Want to know more?


• The organisations and services listed above should be able
to advise further.

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My life with Parkinson’s
by Alun Morgan, who was diagnosed with Parkinson’s in 1999
at the age of 49

I was a teacher for 27 years, the last two with the knowledge that
I had Parkinson’s disease. When I worked (as Head of Information
and Communication Technology) with Parkinson’s, I found it
increasingly difficult to control my mouse, get round the classroom,
and write neatly. The only positive statement I can make about my
Parkinson’s and school is I was unable to write school reports (joy
of joys!).

I stopped working in 2001. I am lucky because I have my teacher’s


pension, which is half of my final salary. A year before diagnosis,
I took out a critical illness policy, which gives me a monthly income
until I am 60. I also receive Incapacity Benefit and Disability Living
Allowance, part of which pays for my mobility car.

I am now heavily involved with the PDS, yet make time for my monkey
puzzle trees, being silly, taking photographs and designing websites.
At the moment I’m designing a website for a tiny book publisher.

I now realise that your family and your friends keep you positive,
look after you and make you forget that you have Parkinson’s.
Talking to people living with Parkinson’s helps you put it into
perspective, and laughing at Parkinson’s is the best medicine.
I know, crying doesn’t get you anywhere, but a joke, a smile and
a smirk help me.

When I taught In Porthcawl, I would see the sea in all its different
moods every day. That’s how my life is now: on the ebb, calm,
stormy, colourful, inviting and relentless.

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Self-help

How do I find information to help me?


Finding the right information to meet your specific needs is a vital
ingredient in coping successfully with Parkinson’s. This may include
resources on:
• the nature of Parkinson’s, its treatment and management
• the services available to help you
• self-help strategies
• useful organisations
• family support
• research
• personal stories from other people with the condition
The kind of information you want or need will depend on your
particular needs, which will probably change over time. Having
too much information all at once, especially when you are newly
diagnosed, can sometimes be overwhelming – but knowing where
to get reliable information when you want it is very important.

The PDS is an obvious place to start. We have a wealth of


information materials – booklets, information sheets, audiovisual
materials and more – on many aspects of Parkinson’s and
associated subjects. If the answer you seek is not contained in

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these, you can contact our Helpline staff, who will be happy to talk
to you about your specific queries and concerns. They will also
signpost you to any appropriate organisations or resources. If your
query is about local facilities, our regional services, including your
PDS Information and Support Worker, local branches and YPN
groups, should be able to advise you further.

There are also many books, websites and useful organisations that
other people with Parkinson’s have found helpful, which are listed in
the ‘Resources’ section at the end of this booklet.

The National Health Service (NHS) has 24-hour, nurse-led telephone


information services on health services and conditions. In England
and Wales this is NHS Direct on 0845 4647, and in Scotland,
NHS24 on 08454 242424.

The following websites also provide information on health


conditions and the services available in the different UK countries:
• England
www.nhsdirect.nhs.uk
• Wales
www.nhsdirect.wales.nhs.uk
• Scotland
www.nhs24.co.uk
• Northern Ireland
www.n-i.nhs.uk/

For more information on how the NHS works:


• England
www.nhs.uk
• Northern Ireland
www.healthandcareni.co.uk

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• Scotland
www.show.scot.nhs.uk
• Wales
www.wales.nhs.uk
• Isle of Man
www.gov.im/dhss/health/
• Guernsey
www.gov.gg/ccm/navigation/health---social-services/
• Jersey
www.gov.je/HealthWell

Primary care services, such as GPs, pharmacists and dentists, are


managed by primary care trusts. These all have Patient Advice and
Liaison Services (PALS), which aim to:
•provide help and information on local healthcare services and
support agencies
• offer practical advice to help resolve difficulties that people
have when using any NHS services or if they don’t know how
to access them
• give users a say in their own care and how their local services
operate
• advise about the NHS complaints system, including local
Independent Complaint Advocacy Services (ICAS), which can
support people making a formal complaint

Your local primary care trust, GP surgery or hospital should be able


to provide you with contact details for your local PALS.

Contact your local social services department for information about


the help that is available from them in your local area. The telephone
number should be in your local directory or available from your GP
surgery, PALS or Citizens Advice Bureau.
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How do I work out what is accurate?
Health and science articles are extremely popular media items that
are readily available in the newspapers and on TV, radio and the
Internet. As wonderful as it is to have so much information at your
fingertips, this availability has created a new problem. Although
excellent resources exist, there are many others that contain
questionable material or make dubious, but persuasive, claims
– especially about complementary therapies.

How do you determine what is reliable


information and what needs to be taken
with large pinches of salt?
It would help to consider the following:
• Who produced the information and why?
Does the website clearly state: its aims and objectives; who
produces the information, with details of their expertise and
qualifications; charity number (where appropriate); and contact
details? Does it subscribe to any codes of practice such as
HON (www.hon.ch) or DISCERN (www.discern.org.uk)?
• How current is the information?
Is there a date provided so you can ensure that the information
is up to date?
• What sort of language is used?
Is the information balanced and unbiased or is it sensational and
emotional?
• What is the purpose of the information?
Is it aimed at simply providing you with information or does
the purpose seem to be to encourage you to buy a product or

96
service? Is the website sponsored by particular commercial
organisations? If so, does it seem biased in favour of their
merchandise?
• What evidence is it based on and does it clearly state this?
For scientific research, double-blinded randomised controlled
trials are the gold standard. They should also be published in
peer-reviewed journals (i.e. where the quality of the research
has been assessed before publication). Personal (sometimes
called anecdotal) experience can be very valuable, especially in
providing opportunities for exchanging ideas and providing mutual
support, but should not be used by itself as ‘proof’ that a product
works. It is important that websites make it clear when information
is based solely on this. Remember that medical conditions often
affect people differently, so your experience may be very different
from someone else’s.
• Is the information from the UK or abroad?
Information from other countries can be very interesting, but may not
be relevant to the UK. Drug names and other details may also differ.
• Check anything you are concerned about with your doctor
If you want to try a complementary therapy, check with your
doctor that there are no contraindications between this and any
treatments that you are already receiving.

Want to know more?


• See Health Information: Finding Reliable Sources on the Internet,
a fact sheet published by the British Medical Association (BMA).
• The BMA’s Best Treatments website aims to provide evidence-
based information to lay people – see www.besttreatments.co.uk
(subscription charge applies).

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• See I don’t know what to believe … making sense of science stories
produced by Sense About Science, an independent charitable
trust promoting good science and evidence in public debates.
See www.senseaboutscience.org
• ‘Bad Science’ is an entertaining weekly column, published in the
Guardian newspaper, written by Ben Goldacre, a doctor working in
the NHS. It focuses on debunking scientific inaccuracy, quackery
and pseudoscience. See www.badscience.net
• Patient UK, an evidence-based website, provides a wealth
of information on health conditions, maintaining a healthy
lifestyle and contact details for many voluntary organisations.
See www.patient.co.uk

Is there a way in which I can take more


control of the care I receive?
Direct payments are cash payments made by local authorities to
people who have been assessed as having a need for community
services. By receiving money in lieu of social care services, people
have greater choice and control over their lives, and are able
to make their own decisions about how their care is delivered.
Payments could go towards respite care or caring support, for
example. The amount of the direct payment will depend on the
assessed person’s means.

NHS Choices is a website that provides information about medical


conditions and signposts to further support. It also enables people
to find and compare services in their area, including GP surgeries,
hospitals and pharmacies.

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Want to know more?
• Contact your local council social services department for more
information about direct payments.

• Visit www.nhs.uk to find out more about NHS Choices.

What is the Expert Patients Programme?


The Expert Patients Programme (EPP) is an NHS-based training
initiative that recognises the importance of patient empowerment.
Set up in April 2002 for people who live with long-term chronic
conditions, it aims to help people to develop new skills to enable
them to manage their condition on a daily basis.

The definition of an ‘expert patient’ is “people living with a long-


term health condition, who are able to take more control over their
health by understanding and managing their conditions, leading to
an improved quality of life”.

The programme is based on research from the UK and the USA over
the past 20 years, which shows that people living with chronic illnesses
are often in the best position to know what they need to manage the
condition they have. If they are given the necessary self-management
skills, this can make a considerable impact on the management of their
condition and their quality of life. The benefits include:
• feeling confident and in control of your life
• aiming to manage your condition and its treatment in partnership
with healthcare professionals
• communicating effectively with professionals and being willing
to share responsibility on treatment

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• being realistic about the impact of your condition on yourself
and your family
• using the skills and knowledge you have to lead a full life

To become an ‘expert patient’, you take a six-week course (two


and a half hours a week), which is led by someone who lives with
a long-term condition themselves.

Want to know more?


• See the EPP website at www.expertpatients.nhs.uk or telephone
020 7922 7860.

What are complementary therapies and


how can they help?
Complementary therapies are non-conventional health treatments,
often based on ancient systems, which may be used in addition
to conventional medicine. Examples include acupuncture, the
Alexander technique, aromatherapy, Ayurveda, creative therapies
(involving art, music, dance or drama), chiropractic, conductive
education, herbal medicine, homeopathy, osteopathy, Pilates,
reflexology, tai chi and yoga.

Complementary therapies are particularly popular among people who


have long-term conditions, such as Parkinson’s. Although there is
limited research information available about the benefits, anecdotally
many people report that they help them with postural control, fitness,
relaxation, social interaction and personal development. Relaxation
therapies have been found to be particularly helpful, as stress can
make the symptoms of Parkinson’s worse.

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Complementary therapies should always be used in addition to
conventional medicine not instead of it. If you are thinking of trying
complementary therapy, discuss this further with your doctor
to ensure that the therapy is suitable for you. This is particularly
important if you want to use herbal medicines, which can be
contraindicated with or interfere with anti-Parkinson’s medication.
You should also make sure that the therapist you use is properly
trained and affiliated to a recognised regulating professional body.

Want to know more?


• See the PDS booklet Complementary Therapies and Parkinson’s
(code B102).

What self-help strategies will help me cope


with Parkinson’s?
When you are living with a long-term condition such as Parkinson’s,
self-help strategies are as important as the support you receive from
medical treatments and health and social care disciplines. This is a
very individual thing – what works for one person will not work for
another. Some of the strategies that have worked for other people
with Parkinson’s include the following:
• Maintain a positive attitude and managing stress. Although
it may not always be easy, particularly at diagnosis stage or
when Parkinson’s is particularly challenging, most people with
Parkinson’s say that developing as positive an attitude as possible
towards their condition makes an enormous difference to how
they lead their lives. Remember, however, that this can take time
and will probably fluctuate depending on how difficult you are
finding Parkinson’s and what else is going on in your life.
• Think about what can be done rather than what cannot.

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• View problems as challenges rather than as something
insurmountable. Breaking them down into smaller stages
can often help.
• Keep a sense of perspective and your sense of humour. Stress
can make the symptoms of Parkinson’s worse, so using relaxation
techniques, including some complementary therapies, can be
beneficial.
If you are dealing with difficult emotions or are depressed, it is
important that you seek help before your situation reaches a crisis
point. Discuss how you are feeling with your doctor or PDNS, who
should be able to refer you to other services that can support you.

Keeping active and maintaining your interests


Make sure that Parkinson’s doesn’t become the sole focus of your
life. Ensure that you do plenty of exercise and continue to enjoy the
hobbies or interests you had before you were diagnosed and/or
develop new ones. Don’t give up if you find a much-loved activity more
difficult. An occupational therapist may be able to suggest ways of
making things easier to manage – this may be by adjusting the way
you do something or by using pieces of equipment.

Doing something creative


Many people find that expressing themselves through creative
therapies – such as writing, art, music – can be enjoyable and provide a
way of expressing their feelings about their life and having Parkinson’s.

Educating yourself about Parkinson’s and meeting others


in a similar position
Ways to do this include reading PDS resources and books and
attending talks at your local PDS branch or YPN group. This will help

102
you understand more about your condition and treatment, which in
turn will help you to make informed decisions about your care.

Meeting other people with Parkinson’s and their families through local
PDS branches or YPN groups helps many people to feel less alone
and to make new friends with whom they can share experiences
and ideas. However, don’t compare your situation or treatment with
someone elses as everyone experiences Parkinson’s differently.

Helping others
Many people say that they gain a lot of satisfaction from helping others
with Parkinson’s through raising awareness the condition, working as
a volunteer for local PDS branches or YPN groups and fundraising.
Contact the PDS for more information on how you can help.

Want to know more?


• Living with a Long-term Illness: the facts by Frankie Campling and
Michael Sharpe focuses on self-help and maintaining a positive
attitude when you have a long-term health condition.

103
Personal experiences
by Colleen Aird, who was diagnosed with Parkinson’s in 2005
at the age of 42
I have never been the type of person who does ‘groups’. The whole
concept of being in a large group for meetings just doesn’t work
for me. So here I am on a Saturday in a group (shudder) and one
full of people who are ill (bigger shudder), including me. This sets
a precedent – the first group meeting I have attended voluntarily.

So why do I suddenly need a group? I need contact. I need to find


specific people who, like me, are young and have Parkinson’s.
Why do I need this contact? At first it was a reassurance thing – you
suddenly get dumped with this condition and you need to benchmark
it. The easiest way is to seek out others with the same objective.

Then you need to share. If I told my step-daughter, Kat, who has


come with me, “I can’t sleep”, she would have some level of
understanding. But if I tell a fellow person with Parkinson’s, they
would know that it’s not about the occasional restless night, but
a whole new sleep pattern that one needs to adapt to. Shared
experience becomes specific.

YPN isn’t a group at all – it’s a collection of hugs that diffuse my


condition. Hugs I want to keep receiving and start giving. If being
involved means that my small contribution to their very big need
helps to embrace another person with Parkinson’s, then count me in.

104
Resources
and contacts

100 Questions and Answers about Parkinson’s Disease


Dr Abraham Lieberman with Marcia McCall (2003)
ISBN 07637 0433 4

Living with a Long-term Illness: the facts


Frankie Campling and Michael Sharpe (2006) ISBN 0 19 852882 5

Living with Parkinson’s Disease


Bridget McCall (2006) ISBN 0 85969 957 9

Parkinson’s at Your Fingertips (3rd edition)


Bridget McCall and Adrian Williams (2004) ISBN 1 85959 110 9

Parkinson’s Disease: A Guide to Treatments, Therapies and


Controlling Symptoms
David A Grimes (2004) ISBN 1 84119914 6

The New Parkinson’s Disease Handbook


Dr Harvey Sagar (2002) ISBN 0 09 18813874

Parkinson’s Disease: A Guide for Patient and Family


Drs Jacob Sage and Roger C Duvoisin (2001) ISBN 0 7817 2977

105
Parkinson’s Disease: A Self-Help Guide for Patients and their Carers
Dr Marjan Jahanshahi and Professor C David Marsden (1998)
ISBN 0 285 63317 1

Personal accounts
Health is Between Your Ears: Living with a Chronic Illness
Svend Andersen (2002) ISBN 87 88130 49 5

Living Well with Parkinson’s


Glenna Wotton Atwood (2005) ISBN 0471 282 235

Lucky Man
Michael J Fox (2003) ISBN 0 091885671

Six Days: the story of the making of the Chester Cathedral Creation
Window (created by Rosalind Grimshaw who has Parkinson’s)
Painton Cowen (2003) ISBN 1 901970 33 7

When Parkinson’s Strikes Early: Voices, Choices, Resources


and Treatment
Barbara Blake-Krebs and Linda Herman (2002) ISBN 0 89793 340 7

Miscellaneous
The Patient’s Internet Handbook
Robert Kiley and Elizabeth Graham, Royal Society of Medicine
(2001) ISBN 978 1853154980

How to read a paper: the basics of evidence-based medicine


(3rd revised edition)
Trisha Greenhalgh, Blackwell Publishing (2006) ISBN 978 1405139762
106
Websites
NHS Direct is the NHS’s information service for patients in England,
Northern Ireland and Wales. If you or a member of your family fall
ill or you want some general information about health services
or conditions, you can phone the 24-hour, nurse-led telephone
information service for advice. Local rate charges apply.
If you live in Scotland, there is a similar service, NHS24.
www.nhsdirect.nhs.uk.

Patient UK is a useful online resource produced by Drs Tim and


Beverley Kenny, two English GPs. This evidence-based website
provides a wealth of information on health conditions, maintaining
and a healthy lifestyle, and contact details for many voluntary
organisations.
www.patient.co.uk

Bandolier is an independent journal and website about evidence-


based healthcare written by Oxford scientists. On their website,
they say that “the impetus behind Bandolier was to find information
about evidence of effectiveness (or lack of it), and put the results
forward as simple bullet points of those that worked and those that
did not: a bandolier with bullets”.
www.medicine.ox.ac.uk/bandolier

Quackwatch is a non-profit organisation, run by Stephen Barrett


who is a retired doctor. Based in the USA, it has an international
focus and attempts to “combat health-related frauds, myths, fads,
and fallacies”.
www.quackwatch.org

107
Useful contacts Organisations
Sharward Services Ltd AbilityNet
(PDS distribution house) PO Box 94
Westerfield Business Centre Warwick CV34 5WS
Main Road Helpline: 0800 269545
Westerfield (Freephone)
Ipswich www.abilitynet.org.uk
Suffolk IP6 9AB
Tel: 01473 212115 Age Concern – Aid Call Ltd
Fax: 01473 212114 Linhay House
Email: pds@sharward.co.uk Linhay Business Park
Ashburton
PDS special interest groups Devon
TQ13 7UP
SPRING (Special Parkinson’s
Tel: 0800 77 22 66
Research Interest Group)
Email: info@aidcall-alarms.co.uk
PO Box 440
www.aidcall.co.uk
Horsham
West Sussex RH13 0YE Northern Ireland:
Tel: 01403 730 163 Tel: 0808 100 45 45
Email: secretary@spring. www.aidcall.co.uk/ni
parkinsons.org.uk
http://spring.parkinsons.org.uk Anxiety UK
Zion Community
Younger Parkinson’s Network Resource Centre
(YPN) 339 Stretford Road
PO Box 33209 Hulme
London SW1V 1WH Manchester M15 4ZY
Helpline: 0808 800 0303 Tel: 08444 775 774
Email: enquiries@parkinsons.org.uk www.anxietyuk.org.uk
www.yap-web.net

108
The Blue Cross Care & Repair (England)
Shilton Road The Renewal Trust Business
Burford Centre
Oxon OX18 4PF 3 Hawksworth Street
Tel: 01993 822 651 Nottingham NG3 2EG
www.bluecross.org.uk Tel: 0115 950 6500
www.careandrepair-england.
British Association org.uk
for Counselling and
Psychotherapy Care & Repair Forum Scotland
15 St John’s Business Park 135 Buchanan Street
Lutterworth Suite 2.5
Leicester Glasgow G1 2JA
LE17 4HB Tel: 0141 221 9879
Tel: 01455 883300 www.careandrepairscotland.co.uk
www.bacp.co.uk
Care & Repair Cymru
British Association/College Norbury House
of Occupational Therapists Norbury Road
106–114 Borough High Street Fairwater
Southwark Cardiff CF5 3AS
London SE1 1LB Tel: 029 20576 286
Tel: 020 7357 6480 www.careandrepair.org.uk
www.cot.org.uk
Carers UK
British Medical Association 20 Great Dover Street
BMA House London SE1 4LX
Tavistock Square CarersLine: 0808 808 7777
London WC1H 9JP (Wednesday–Thursday
Tel: 020 7387 4499 10am–12noon and 2pm–4pm)
www.bma.org.uk Tel: 020 7378 4999
www.carersuk.org

109
Cats Protection City & Guilds (Learning for
National Cat Centre Living course for carers)
Chelwood Gate Tel: 01455 201020
Haywards Heath www.learning-for-living.co.uk
Sussex RH17 7TT
Tel: 08702 099 099 Department for Work and
www.cats.org.uk Pensions
Disability Benefit Centre
Chartered Society of 3 Olympic House, Olympic Way
Physiotherapy Wembley HA9 ODL
14 Beford Row Helpline: 0800 882200
London WC1R 4ED Textphone: 0800 243355
Tel: 020 7306 6666 www.dwp.gov.uk
www.csp.org.uk Jobcentre Plus website:
www.jobcentreplus.gov.uk
The Cinnamon Trust
10 Market Square Depression Alliance
Hayle 212 Spitfire Studios
Cornwall TR27 4HE 63–71 Collier Street
Tel: 01736 757 900 London N1 9BE
www.cinnamon.org.uk Tel: 0845 123 2320
www.depressionalliance.org
Citizens Advice (address for
National Association known Disabled Living Foundation
as NACAB) 380–384 Harrow Road
Myddleton House London W9 2HU
115–123 Pentonville Road Tel: 020 7289 6111
London N1 9LZ Helpline: 0845 130 9177
Tel: 020 7833 2181 (Monday–Friday 10am–4pm)
www.citizensadvice.org.uk www.dlf.org.uk
Internet advice guide:
www.adviceguide.org.uk

110
Disabled Parents Network Wales:
81 Melton Road Freepost RRLR-UEYB-UYZL
West Bridgford Third Floor, 3 Callaghan Square
Notts NG2 8EN Cardiff CF10 5BT
Tel: 0300 3300 639 Tel: 0845 604 8810
www.disabledparentsnetwork. Textphone: 0845 604 8820
org.uk
The Expert Patients Programme
Disability Pregnancy and Tel: 020 7922 7860
Parenthood International www.expertpatients.co.uk
National Centre for Disabled
Parents First Steps to Freedom
Unit F9, 89–93 Fonthill Road Helpline: 0845 120 2916
London N4 3JH www.first-steps.org
Tel: 0800 018 4730
www.dppi.org.uk Gardening for the
Disabled Trust
The Equality and Human PO Box 285
Rights Commission Tunbridge Wells
3 More London Kent TN2 9JD
Riverside Tooley Street www.gardeningfordisabledtrust.
London SE1 2RG org.uk
Tel: 0845 604 6610
Textphone: 0845 604 6620 Help the Aged
www.equalityhumanrights.com 207–221 Pentonville Road
Scotland: London N1 9UZ
The Optima Building Tel: 020 7278 1114
58 Robertson Street www.helptheaged.org.uk
Glasgow G2 8DU Northern Ireland:
Tel: 0845 604 5510 Ascot House
Textphone: 0845 604 5520 Shaftesbury Square
Belfast BT2 7DB
Tel: 02890 230 666
111
Scotland: Motability (Car Scheme)
11 Granton Square City Gate House
Edinburgh EH5 1HX 22 Southwark Bridge Road
Tel: 0131 551 6331 London SE1 9HB
Wales: Tel: 0845 456 4566
12 Cathedral Road www.motability.co.uk
Cardiff CF11 9LJ
Tel: 02920 346 550 National Animal Welfare Trust
Tyler’s Way, Watford-By-Pass
learndirect Watford
PO Box 900 Herts WD25 8WT
Leicester LE1 6ER Tel: 020 8950 0177
Tel: 0800 101 901 (Monday– www.nawt.org.uk
Sunday 7am–11pm)
www.learndirect.co.uk NHS Direct (England and
Northern Ireland)
MedicAlert Tel: 0845 4647
1 Bridge Wharf Textphone: 0845 606 4647
156 Caledonian Road www.nhsdirect.nhs.uk
London N1 9UU NHS Direct (Wales)
Freephone: 0800 581420 Tel: 0845 4647
www.medicalert.org.uk www.nhsdirect.wales.nhs.uk
NHS24 (Scotland)
Mind Tel: 08454 242424
15–19 Broadway www.nhs24.com
London E15 4BQ
Tel: 020 8519 2122 No Panic
Helpline: 08457 660163 Helpline: 0808 808 0545
www.mind.org.uk www.nopanic.org.uk

112
Occupational Therapists Patient Advice and Liaison
in Independent Practice Services (PALS)
Tel: 0800 389 4873 Contact your local primary
www.otip.co.uk care trust.

One Parent Families/ Patient’s Association


Gingerbread PO Box 935
255 Kentish Town Road Harrow
London NW5 2LX Middlesex HA1 3YJ
Tel: 020 7428 5400 Tel: 020 8423 9111
Helpline: 0800 018 5026 Helpline: 0845 608 4455
(Monday–Friday,9am–5pm) www.patients-association.org.uk
www.oneparentfamilies.org.uk
The Pet Fostering Service,
One Parent Families Scotland
Manchester Tel: 01877 331 496
Room 2.2 www.pfss.org.uk
Windrush Millenium Centre
70 Alexandra Road Primary care trusts
Moss side In your local phone directory or
Manchester M16 7WD via the following websites:
Tel: 0161 636 7564 England:
www.oneparentfamilies.org.uk/ www.nhs.uk
manchester
Northern Ireland:
www.hscni.net
One Parent Families Scotland
13 Gayfield Square Scotland:
Edinburgh EH1 3NX www.show.scot.nhs.uk
Tel: 0131 556 3899 Wales:
Scotland Lone Parent Helpline: www.wales.nhs.uk
0808 801 0323 (Monday–Friday,
9.30am–4.30pm)
www.opfs.org.uk

113
The Princess Royal Trust Royal College of Psychiatrists
for Carers 17 Belgrave Square
Unit 14 London SW1X 8PG
Bourne Court Tel: 020 7235 2351
Southend Road www.rcpsych.ac.uk
Woodford Green
Essex IG8 8HD RSPCA
Tel: 0844 800 4361 Enquiries service
www.carers.org Wilberforce Way
Southwater
PSP (Europe) Association Horsham
PSP House West Sussex RH13 9RS
167 Watling Street West Tel: 0300 1234 555
Towcester www.rspca.org.uk
Northants NN12 6BX
Tel: 01327 322410 Sarah Matheson Trust
www.pspeur.org Southbank House
Black Prince Road
RADAR London SE1 7SJ
12 City Forum Tel: 0207 940 4666 (all enquiries)
250 City Road (Monday–Friday, 9.30am–4.30pm)
London EC1V 8AF Email: office@msaweb.co.uk
Tel: 020 7250 3222 (all enquiries)
www.radar.org.uk www.msaweb.co.uk

Relate Talisman Ltd (SOS Talisman)


Premier House 21 Grays Corner
Carolina Court Ley Street
Lakeside Ilford
Doncaster DN4 5RA Essex IG2 7RQ
Tel: 0300 100 1234 Tel: 020 8554 5579
www.relate.org.uk www.sostalisman.co.uk

114
Thrive
The Geoffrey Udall Centre
Beech Hill
Reading RG7 2AT
Tel: 0118 988 5688
www.thrive.org.uk

Vitalise
12 City Forum
250 City Road
London EC1V 8AF
Tel: 0845 345 1972
www.vitalise.org.uk

115
Notes

116
PDS Publications Response Form
To ensure that the PDS is providing as good a service as possible,
we like to find out what readers think of publications. We would be
extremely grateful if you would complete this form and return it to
PDS National Office (contact details overleaf).
Thank you.

Are you? (please tick)

• Someone with Parkinson’s 


I have had Parkinson’s for _____ years.

• A carer for someone with Parkinson’s 


I’ve been a carer for ______ years.

• A relative of someone with Parkinson’s 

• A friend of someone with Parkinson’s 

• A professional working with people with Parkinson’s 

This booklet: Living with Parkinson’s


Where did you get the publication from? (please tick)

Sharward Services  Information day  PDS branch  Hospital 

Doctor’s practice  Pharmacy/Chemist  PDS website  Other 

How useful have you found the publication?


(please circle a number: 1 is not very useful, 7 is very useful)

1 2 3 4 5 6 7
Which section did you find most helpful?...................................
....................................................................................................

117
Which section did you find least helpful?....................................
....................................................................................................
Are there any topics you felt should have been listed
but weren’t?................................................................................
....................................................................................................
Have you found the publication easy to read/use? Yes No
Any other comments on this publication?...................................
....................................................................................................
Is there another topic which you think the PDS should provide
a booklet/information sheet on?.................................................
....................................................................................................
Many thanks for your help. You do not have to give your details
below, but if you do so, it will help us give a better service in future.
Name:..........................................................................................
Date of birth:................................................................................
Address:......................................................................................
Postcode:.................................Tel:..............................................
Email:...........................................................................................

Are you a PDS member? (please circle) Yes No


Would you like information about PDS membership? Yes No

Please cut out your completed form and post it to:


Publications Department, Parkinson’s Disease Society,
215 Vauxhall Bridge Road, London SW1V 1EJ
or fax to 020 7233 9908. Thank you for your help.

118
The Parkinson’s Disease Society of the United Kingdom is
registered under the Data Protection Act and all information you
supply through the response form will be treated under the terms of
the Act. The PDS will hold this data on its own database and will not
release it to any commercial organisation. Information supplied will
be used for monitoring services.
© Parkinson’s Disease Society of the United Kingdom, 2008
Charity registered in England and Wales No. 258197 and in Scotland No. SC037554.
A company limited by guarantee, Registered No. 948776 (London)
Registered Office 215 Vauxhall Bridge Road, London SW1V 1EJ
Tel 020 7931 8080 Fax 020 7233 9908
PDS Helpline (free) 0808 800 0303 Textphone: 0800 111 4204 (The Helpline is a confidential service.
Calls are free from UK landlines and some mobile networks.)
email enquiries@parkinsons.org.uk website www.parkinsons.org.uk

Designed and produced by PDS Information Resources


120 February 2009 Code B077