Parkinson`s Well-Being MapTM

Parkinson’s Well-Being Map
TM
Supporting communication of my Parkinson’s
The Parkinson’s Well-Being MapTM has been endorsed by:
Developed in partnership with UCB. All rights reserved © 2014 UCB,
Trademarks indicated ® or ™ are the property of their respective owners
CNS-OTH-023868-072013 UK/11NE0128c
CNS-OTH-023868-072013 UK/11NE0128c DOP: February 2014
Introduction
Parkinson’s disease is a progressive, chronic neurodegenerative disease. The prevalence in industrialised nations is
estimated at 1 in 100 people over the age of 601 and is rarer in people under 50 years of age. It is predominantly characterised
by problems with body movements, known as ‘motor symptoms’ – the most recognisable being tremor. However, the
non-motor symptoms are missed by neurologists in 59% of consultations 2 and also often undeclared by people with
Parkinson’s to healthcare professionals3 resulting in under-diagnosis and under treatment.
The Parkinson’s Well-Being Map™ has been developed to support communication of a person’s Parkinson’s
status with their care team.
T to:
Using the Map you areM
able
•
•
•
Monitor your condition
Review your motor and non-motor symptoms
Make the most of your consultation to focus on the questions important to you
1. de Lau LM, Breteler MM. Epidemiology of Parkinson’s disease. Lancet Neurol. 2006 Jun;5(6):525-35.
2. Shulman LM et al. Parkinsonism Relat Disord 2002;8(3):193–197
3. Clarke CE et al. Br J Clin Pract 1995;49(6):288–293
CNS-OTH-023868-072013 UK/11NE0128c DOP: February 2014
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The Parkinson’s Well-Being Map contains several
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• Monitor symptoms over time
• Summarise your health and well-being over the past month in preparation for your consultation.
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• Fill the date on the top of the page.
•
3
3
For each aspect of your well-being (e.g. Mood, Pain, Movement etc. represented with different colour codes), work alone or with your partner to identify the symptoms that you have experienced over the last month.
For each aspect of your well-being (e.g. Mood,
Pain, Movement etc. represented with different
colour codes), identify and circle the most
troublesome symptom for you.
• For each symptom identified record its frequency in the box provided where:
0 = Never
3 = Often
1 = Occasionally
4 = Always
2 = Sometimes
CNS-OTH-023868-072013 UK/11NE0128c DOP: February 2014
How to complete the Parkinson’s Well-Being MapTM (cont.)
3 Rate the frequency of your most
troublesome symptom
5 Other aspects of your Parkinson’s
4 Connect up your numbers
Parkinson’s Well-Being MapTM
supporting communication of my Parkinson’s
2
2
1
1
2
1
1
2
3
3
The aspect I want to focus
on the most is
3
3
Parkinson’s Medication below are suggested
I am taking the following Parkinson’s medications
Sleep disturbances
APO-go (Apomorphine)
Mysolin (Primidone)
Apomorphine (Apomorphine)
Neupro (Rotigotine)
Arpicolin (Procyclidine)
Orphenadrine (Orphenadrine)
Azilect (Rasagiline)
Parlodel (Bromocriptine)
Biorphen (Orphenadrine)
Parlodel Capsules
Bladder and Sexual Function
Broflex (Trihexyphenidyl)
Pergolide (Pergolide)
Other Non-Motor Symptoms
Bromocriptine (Bromocriptine)
Pramipexole (Pramipexole)
Moods
Cabaser (Cabergoline)
Procyclidine (Procyclidine)
Cabergoline (Cabergoline)
Requip (Ropinirole)
Co-beneldopa (Benserazide, Co-beneldopa, Levodopa)
Requip XL (Ropinirole)
Co-careldopa (Carbidopa, Co-careldopa, Levodopa)
Ropinirole
Comtess (Entacapone)
Ropinirole Sustained Release
Disipal (Orphenadrine)
Selegiline (Selegiline)
Duodopa (Carbidopa, Levodopa)
Sinemet (Carbidopa, Co-careldopa, Levodopa)
Eldepryl (Selegine)
Sinemet CR (Carbidopa, Co-careldopa, Levodopa)
Eldepryl Syrup
Stalevo (Carbidopa, Entacapone, Levodopa)
Half Sinement CR (Carbidopa, Co-careldopa, Levodpa)
Symmetrel (Amantadine)
Kemadrin (Procyclidine)
Symmetrel Syrup (Amantadine)
Madopar (Benserazide, Co-beneldopa, Levodopa)
Tasmar (Tolcapone)
Madopar CR (Benserazide, Co-beneldopa, Levodopa)
Trihexyphenidyl (Trihexyphenidyl)
Attention/Memory
Digestion and the Gut
Movement
Pain
The three most important questions
to ask my care team are:
1 ............................................................................
............................................................................
2 ............................................................................
............................................................................
3 ............................................................................
Madopar Dispersible (Benserazide, Co-beneldopa, Levodopa)
Zelapar (Selegiline)
For each aspect of your well-being (e.g. Mood, Pain,
Movement etc. represented with different colour codes),
rate the frequency of the most troublesome symptom
by circling the most appropriate number on the 0-4
scale where:
0 = Never 1 = Occasionally
3 = Often 4 = Always
2 = Sometimes
Connect up the numbers you have selected by
drawing lines between them. This will generate
a pattern which will provide an instant visual
record of your current well-being.
• Highlight the symptoms that are of most concern
to you.
Mirapexin (Pramipexole)
Mirapexin Prolonged Release (Pramipexole)
• List the three most important questions you wish
to ask your care team at your next consultation.
•
Medications you have taken over this period – you
may want to highlight any new medications you have started since the last consultation (including over-thecounter remedies such as aspirin etc).
• Once completed, the Map can be taken to your
next consultation to share with your care team.
CNS-OTH-023868-072013 UK/11NE0128c DOP: February 2014
Parkinson’s Well-Being Map TM
To complete your Parkinson’s Well-Being Map
TM
DATE: (DD/MM/YY)
refer to steps 1-5 detailed on the previous pages.
................................
Sleep disturbances
Attention/Memory
Digestion and the Gut
No symptoms experienced
I have restless sleep
I have difficulty falling asleep at night
I have difficulty staying asleep
I have difficulty getting back to sleep once awake
I have morning tiredness
I have fatigue during the day
I frequently doze off at inappropriate moments
Other: ............................
No symptoms experienced
I lose my train of thought during
conversations
I am unable to concentrate
during activities
I have slowness of speech
I am forgetful
I have difficulty remembering names,
numbers, events
Other: ............................
No symptoms experienced
I have difficulty swallowing
I am dribbling/drooling (a lot of saliva)
I have bouts of vomiting or feeling sick (nausea)
I have constipation
I have diarrhoea
I have an upset stomach
Other: .............................
No symptoms experienced
My feet feel stuck to the floor/I have trouble starting to move
My movements feel stiff (Rigidity) predominantly in the early
morning after waking-up
I have stiffness (Rigidity) throughout the day
I have shaking (Tremor)
I have slowness of movement (Bradykinesia)
I have decreased ability to move at some times during the day
I have involuntary movements (Dyskinesias)
I lose my balance
I fall over
I lean towards or to the side
I have trouble talking
I have small handwriting (Micrographia)
Other: .............................
Mood
No symptoms experienced
I feel a loss of interest
I lack pleasure from things I used to enjoy
I feel unhappy
I am anxious, frightened or panicky
I am depressed
Other: ............................
Other Non-Motor Symptoms
No symptoms experienced
I feel light-headed/dizzy when standing
from a lying position
I fall due to fainting/blackouts
I notice a change in my ability to smell/taste
I notice a change in weight (not due to
change in diet)
I have excessive sweating
I see/hear things that are not there
Other: ............................
To download additional maps go to www.parkinsons-voices.eu
Movement
Pain
Bladder and Sexual Function
No symptoms experienced
I feel the urge to pass urine
I get up at night to pass urine
I have an altered interest in sex
I have difficulty having sex
Other: ............................
No symptoms experienced
I have early morning painful cramps (dystonia) affecting
toes, fingers ankles, wrists causing me to wake up
I have painful, stiff limbs during the day
I have painful, stiff limbs at night
I have shock-like shooting pain down my limbs
I have pain with abnormal involuntary movements
(Dyskinesia)
I have severe headaches
Other: ............................
CNS-OTH-023868-072013 UK/11NE0128c DOP: February 2014
Parkinson’s Well-Being Map TM
Supporting communication of my Parkinson’s
The aspect I want to focus
on the most is:
I am taking the following medications:
Parkinson’s medication
Sleep disturbances
APO-go (Apomorphine)
Mysolin (Primidone)
Attention/Memory
Apomorphine (Apomorphine)
Neupro (Rotigotine)
Digestion and the Gut
Arpicolin (Procyclidine)
Orphenadrine (Orphenadrine)
Azilect (Rasagiline)
Parlodel (Bromocriptine)
Biorphen (Orphenadrine)
Parlodel Capsules
Movement
Pain
Broflex (Trihexyphenidyl)
Pergolide (Pergolide)
Bladder and Sexual Function
Bromocriptine (Bromocriptine)
Pramipexole (Pramipexole)
Other Non-Motor Symptoms
Cabaser (Cabergoline)
Procyclidine (Procyclidine)
Moods
Cabergoline (Cabergoline)
Requip (Ropinirole)
Co-beneldopa (Benserazide, Co-beneldopa, Levodopa)
Requip XL (Ropinirole)
Co-careldopa (Carbidopa, Co-careldopa, Levodopa)
Ropinirole
Comtess (Entacapone)
Ropinirole Sustained Release
Disipal (Orphenadrine)
Selegiline (Selegiline)
Duodopa (Carbidopa, Levodopa)
Sinemet (Carbidopa, Co-careldopa, Levodopa)
Eldepryl (Selegine)
Sinemet CR (Carbidopa, Co-careldopa, Levodopa)
Eldepryl Syrup
Stalevo (Carbidopa, Entacapone, Levodopa)
Half Sinement CR (Carbidopa, Co-careldopa, Levodpa)
Symmetrel (Amantadine)
Kemadrin (Procyclidine)
Symmetrel Syrup (Amantadine)
Madopar (Benserazide, Co-beneldopa, Levodopa)
Tasmar (Tolcapone)
Madopar CR (Benserazide, Co-beneldopa, Levodopa)
Trihexyphenidyl (Trihexyphenidyl)
Madopar Dispersible (Benserazide, Co-beneldopa, Levodopa)
Zelapar (Selegiline)
The three most important questions
to ask my care team are:
1 ............................................................................
............................................................................
2 ............................................................................
............................................................................
3 ............................................................................
............................................................................
Mirapexin (Pramipexole)
Mirapexin Prolonged Release (Pramipexole)
Source: http://www.mims.co.uk/search/Drugs/phrase/Parkinsons
Did I have time to ask all my questions?
Yes
No
Over-the-counter medication (e.g. aspirin)
.................................................................................................................................................................................
.................................................................................................................................................................................
CNS-OTH-023868-072013
UK/11NE0128c DOP:
February 2014DOP: February 2014
CNS-OTH-023868-072013
UK/11NE0128c
The Cure Parkinson’s
Trust (CPT)
The Spanish
Parkinson’s Federation
The European Parkinson’s
Disease Association (EPDA)
The Cure Parkinson’s Trust (CPT) was set up in 2005
by four people living with the condition. It has one bold
aim – to cure Parkinson’s. CPT funds innovative projects
and inspirational scientists with the aim of building
momentum towards a cure. We bring scientists together
to improve communication and promote collaboration. We adopt a direct and ‘no nonsense’ approach to
making an impact in the research arena. As our policies
are shaped by people living with Parkinson’s, there is a
refreshing passion and urgency in everything we do.
The Spanish Federation of Parkinson Disease (FEP) was
established in November 1996. It is currently composed of
45 associations spread throughout Spain which represent
more than 11,500 associates. Our main objective is to
improve the quality of life of patients and their families.
To accomplish this, the FEP has projects related with
research, training and information, free time, environment
and nature, rehabilitation, or family support, among
others. In the end, all projects developed improve the
lives of those affected either by the training of caregivers,
by promoting research or by providing rehabilitation for
those affected such as physiotherapy, speech therapy,
occupational therapy, psychological care, etc. which
offers those affected the tools to reduce physical and
psychological impact produced by the disease.
The European Parkinson’s Disease Association
(EPDA) is the only European umbrella organisation for
Parkinson’s disease. A non-political, non-religious,
and non-profit making organisation, it represents 45
member organisations and is the advocate for the rights
and needs of over 1.2 million people with Parkinson’s
and their families. EPDA’s vision is to enable a full life
with Parkinson’s whilst supporting the search for a cure
and seeks to achieve this by raising awareness and
reducing inequalities in the treatment and management
of Parkinson’s disease across Europe.
The Cure Parkinson’s Trust
St Botolphs
Aldgate High Street
London EC3N 1AB
Tel: +44 (0) 207 929 7656
The Spanish Federation of Parkinson’s disease counts
on the support and advice of a scientific committee
composed of eight doctors with a broad professional
background on Parkinson’s disease.
www.cureparkinsons.org.uk
Registered charity number: 1111816
The European Parkinson’s Disease Association
1 Northumberland Avenue
Trafalgar Square
London
WC2N 5BW
United Kingdom
Tel: +44 (0) 207 872 5510
Email: info@epda.eu.com
www.epda.eu.com
Federación Española de Párkinson
Paseo Reina Cristina, 8 3ºB
28014 Madrid
Tlf: +34 91 4345371
www.fedesparkinson.org
CNS-OTH-023868-072013 UK/11NE0128c DOP: February 2014
Parkinson’s Well-Being Map
TM
Supporting communication of my Parkinson’s
Contact Information
UCB Pharma 208 Bath Road Slough Berkshire SL1 3LE
Web: www.ucbpharma.co.uk
Medical Information: 01753 534655
Developed in partnership with UCB. All rights reserved © 2014 UCB
CNS-OTH-023868-072013 UK/11NE0128c DOP: February 2014
CNS-OTH-023868-072013 UK/11NE0128c DOP: February 2014