Living with Parkinson's

136 Pages·2014·2.9 MB·English

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Living with Parkinson’s
This booklet is for people
who are looking for in-depth
information about how
Parkinson’s may afect their
day-to-day lives – and how
to manage the condition.
It covers aspects such as
treatments, relationships,
self-management, work
and travel.
Everyone’s experience of Parkinson’s
is diferent, and how the condition
may afect your day-to-day life
can vary. By providing practical
information about life with
Parkinson’s, we hope this guide
will answer some of your questions
and help you to take control.
Through the voices of others with
the condition, we hope it will provide
some inspiration to encourage you
to continue living life to the full.
It also has information that may
be helpful for family members,
carers and friends.
Contact details for all of the
organisations mentioned, details
of how to order other resources
and a list of words and their
meanings can be found at the
back of this booklet.
Contents
Types of Parkinson’s ..................................................................................... 5
Healthcare professionals ............................................................................ 15
Medical treatments ............................................................................... 25
Emotions and mental health .............................................................. 34
Helping yourself ..................................................................................... 41
Relationships ............................................................................................ 49
Being a parent or grandparent .......................................................... 57
Living on your own ................................................................................ 63
Speaking, writing and communicating ........................................... 67
Independence and daily living ........................................................... 73
Diet and exercise .................................................................................... 83
Travel and leisure ................................................................................... 91
Work and money .................................................................................... 99
Information for carers ......................................................................... 105
Does Parkinson’s research ofer hope for the future? ............ 109
Finding out more about Parkinson’s ............................................... 111
More information and support ......................................................... 117
Index ........................................................................................................... 131
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Types of Parkinson’s
What is parkinsonism? What is Parkinson’s?
Parkinsonism describes a range Parkinson’s is a progressive
of conditions whose main symptoms neurological condition. People
include tremor, stif muscles and with Parkinson’s don’t have enough
slow movements. of the chemical dopamine because
some of the nerve cells in their brain
Parkinson’s, also known as that make it have died. Without
idiopathic Parkinson’s, is the most dopamine, people can fnd their
common form of parkinsonism. movements become slower, so
Idiopathic means that the cause it takes longer to do things.
is unknown. Most people with
parkinsonism have Parkinson’s, but What causes Parkinson’s?
other types include multiple system
We don’t yet know exactly
atrophy (MSA) and progressive
why people get Parkinson’s, but
supranuclear palsy (PSP).
researchers think that a combination
of genetic and environmental factors
Find out more: see our
cause dopamine-producing nerve
information sheet Parkinsonism.
cells to die.
We ofer support to everyone
with parkinsonism, but if you’ve
Can certain types
been diagnosed with MSA, you
of medication cause
can also contact The Multiple
System Atrophy Trust. If you’ve Parkinson’s?
been diagnosed with PSP, you can There is a risk that some
also contact the PSP (Europe) medications used for other
Association. See the ‘Useful conditions, such as drugs used
contacts’ section on page 118. to treat serious mental health
problems, dizziness, nausea and
high blood pressure, can bring on
Parkinson’s-like symptoms. This
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type of parkinsonism is called drug- The symptoms most ofen
induced parkinsonism. This happens associated with Parkinson’s are:
with drugs that block dopamine (the
chemical that is in short supply in the Tremor
brains of people with Parkinson’s). Parkinson’s can cause some people’s
If you’re worried about the drugs hands and bodies to shake. It
you are taking, speak to your GP. usually begins in one hand or arm.
If you have a tremor, you will be
Find out more: see our information able to notice it more easily when
sheet Drug-induced parkinsonism. your afected body part is resting,
or if you are angry or excited.
How many people have This is known as a resting tremor.
Your tremor may decrease or
Parkinson’s?
stop altogether when the body
About one person in every 500 has
part is used. This is the symptom
Parkinson’s. That’s about 127,000
that many people associate with
people in the UK. Most people who
Parkinson’s, but not everyone
get Parkinson’s are aged 50 or over,
with the condition has a tremor.
but younger people can get it too.
Find out more: see our information
What are the symptoms
sheet Tremor and Parkinson’s.
of Parkinson’s?
Not everyone with Parkinson’s has
Rigid or stif muscles
the same symptoms. You won’t
Rigid muscles can make it hard to
experience all of the possible
do everyday things and can be very
symptoms and they won’t happen
painful. You may have problems
in a particular order.
turning around, getting out of a chair
or making fne fnger movements
Everyone with Parkinson’s is
such as fastening buttons or touch-
diferent, so how a symptom
typing. Some people fnd that their
afects you, the time the condition
posture becomes stooped or their
takes to progress and how it is
face becomes stif, so it’s harder
treated may be diferent for you
to make facial expressions.
than for other people with the
condition. Many people also fnd
Slowness of movement
that how the condition afects
You may fnd that it gets harder to
them can change from day to day,
make movements and that they
and even from hour to hour.
take longer. Some people’s arms
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stop swinging when they walk, their low and isn’t working so well. When
heel doesn’t hit the ground smoothly you next take your medication, your
and they take smaller steps. These symptoms may be less noticeable
symptoms may be mild in the early because you are ‘on’ again.
stages of Parkinson’s, but this can
change as the condition progresses. Find out more: see our information
You could also have problems with: sheets Falls and Parkinson’s, Foot
care and Parkinson’s, Freezing in
y balance and walking – this can Parkinson’s and Levodopa: wearing
sometimes lead to falls of and involuntary movements
(dyskinesia).
y freezing – this is when people
with Parkinson’s stop suddenly What are the other
while walking or when starting
symptoms of Parkinson’s?
a movement. If you freeze, you
For a long time, Parkinson’s was
may fnd you’re not able to move
seen as a condition that mainly
again for some time
afected movement. But
symptoms that aren’t directly
You may fnd that your symptoms are
related to movement are very
worse during an ‘of’ period, when
common – these are called non-
your Parkinson’s medication level is
motor symptoms.
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Everyone with Parkinson’s has Find out more: see our booklet
a diferent experience of the Looking afer your bladder and
condition, and it’s important to bowels when you have Parkinson’s.
remember that not everyone will
experience all of these symptoms. Dental problems
The speed at which the condition It’s important to keep your mouth
develops and how strongly you and teeth healthy. You may
experience any symptoms also experience problems such as excess
changes from person to person. saliva and dribbling, or a dry mouth.
Some other symptoms you may Movement problems may make
experience include the following. it more difcult to clean your teeth
or dentures or to get to the dentist.
Anxiety
People with Parkinson’s can ofen Find our more: see our information
experience feelings of anxiety or sheet Dental health and Parkinson’s.
panic attacks. Mood changes may
be caused by your medication level. Depression
If you’re ‘on’, you might feel better, This is common in Parkinson’s.
but if you’re ‘of’, your negative The symptoms of depression include
thoughts may increase. low mood, lack of sleep, problems
with appetite, trouble concentrating
Find out more: see our information and a lack of energy. Depression
sheet Anxiety and Parkinson’s. may be difcult to recognise as
many symptoms overlap with the
Apathy symptoms of Parkinson’s itself.
You may not feel like you want to
do very much. You may be content Find out more: see page 36
to stay at home and do very little and read our information sheet
without necessarily feeling sad. Depression and Parkinson’s.
Bladder and bowel problems Excess saliva and swallowing
Not everyone with Parkinson’s will problems
experience these, but difculties If you’ve had Parkinson’s for several
including incontinence and years, you may fnd it hard to
constipation can afect some people. swallow. This can cause problems
with excess saliva and problems with
eating food and taking medication.
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Find out more: see our information Sleep and night-time problems
sheets Eating, swallowing and saliva You may experience problems
control in Parkinson’s and Speech and sleeping that will leave you feeling
language therapy and Parkinson’s. tired during the day. There are
many diferent reasons for these
Fatigue problems, including changes in
You might fnd you get very tired, how you react to your medication,
lack energy or feel exhausted. This muscle spasms (dystonia) and
can afect what you can do and restless legs syndrome.
how well you can concentrate.
Find out more: see our information
Find out more: see our information sheets Sleep and night-time
sheet Fatigue and Parkinson’s. problems in Parkinson’s and Restless
legs syndrome and Parkinson’s.
Pain
Many people with Parkinson’s If you experience sleep and night-
experience pain in some form, which time problems, speak to your GP
can be due to muscle spasms, or a or specialist. You can also speak
range of other causes (dystonias – to your Parkinson’s nurse, if you
see glossary on page 127). have one. A Parkinson’s nurse
is a qualifed registered general
Find out more: see our information nurse with specialist experience,
sheets Pain in Parkinson’s and knowledge and skills in Parkinson’s.
Muscle cramps and dystonia. They play a vital role in the care of
people with Parkinson’s. You can
Skin and sweating problems read more about them on page 18.
Parkinson’s can cause the glands
in your skin to make too much of We have a non-motor symptoms
a substance called sebum, which can questionnaire available to help you
make your skin and scalp greasy and talk about these symptoms with
scaly. Sweating, especially at night, your healthcare professional. You
can be caused by the condition or can order a free copy of this and
some Parkinson’s medications. our other resources by using the
details listed on the inside back
Find out more: see our information cover. You can also download
sheet Skin, scalp and sweating them from our website at
problems in Parkinson’s. parkinsons.org.uk
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Does Parkinson’s cause memory problems and Hallucinations
and delusions in Parkinson’s.
thinking and memory
problems?
How is Parkinson’s
For some people, Parkinson’s
afects thinking and memory. diagnosed?
This could be caused by the Parkinson’s tends to develop
condition, a side efect of your gradually and it can be a number
Parkinson’s medication or by other of months, or even years, before
medical conditions you may have. your symptoms progress enough
for you to contact your GP.
You may have problems
remembering things or It is not easy to diagnose the
concentrating for a long time. condition, so it’s important that
You may need extra time to you see a Parkinson’s specialist to
answer when someone is speaking get an accurate diagnosis. Your GP
to you. It won’t be that you don’t should be able to refer you.
understand, it may just take you
longer to organise your thoughts A Parkinson’s specialist will usually
and answer questions. You may be a consultant or geriatrician with
also fnd it hard to do more than a special interest in Parkinson’s. The
one thing at a time. specialist will usually look for two
or more of the main symptoms
Some people with Parkinson’s may of tremor, rigidity or slowness of
go on to get dementia. This is more movement. They will also consider
common in people who develop your medical history and carry out
Parkinson’s later in life. an examination before making a
diagnosis.
Some people with Parkinson’s also
get hallucinations and delusions. The symptoms of Parkinson’s can
These can be caused by the condition have other causes. When a specialist
or can be a side efect of Parkinson’s thinks that someone has Parkinson’s,
drugs. It is important to talk about they will rule out other possible
any of these problems with your conditions, such as multiple system
GP, specialist or Parkinson’s nurse. atrophy, progressive supranuclear
palsy or Wilson’s disease.
Find out more: see our information
sheets Parkinson’s dementia, Find out more: see our information
Dementia with Lewy bodies, Mild sheet Diagnosing Parkinson’s.
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