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Un d er s t an d in g

Parkinson ’s : a g uid e
fo r c ar e st af f g Officer
Educ atio n & Tra inin
Claire Holt :
Aims of the seminar
• To increase your knowledge and understanding of Parkinson’s.
• To better understand the needs of people living with and caring
for people with Parkinson’s.
• To identify challenges associated with the symptoms of
Parkinson’s, the side effects of the medication, and to dispel any
myths surrounding Parkinson’s.
•To learn about the resources available to improve the quality of life
of people with Parkinson’s and their carers.
Programme
Parkinson’s Disease – an overview

Break

DVD

Parkinson’s UK

Addressing the Challenges of Caring - Case Studies

Summary and Evaluation

Close
Parkinson’s: overview
• Progressive

• Fluctuates

• Neurological – loss of dopamine in the brain

• Currently no cure

• Not contagious

• Rarely directly inherited

• Everyone is different
Essay on the Shaking Palsy

“….involuntarytremulous motion, with


lessened muscular power, in parts not
in action …… with a propensity to
bend the trunk forward, and to pass
from a walking to a running pace ……
the senses and intellect being
uninjured.”
Dr James Parkinson, London 1817
Essay on the Shaking Palsy

“….involuntarytremulous motion,
with lessened muscular power, in
parts not in action … with a
propensity to bend the trunk
forward, and to pass from a
walking to a running pace… the
senses and intellect being
uninjured.”
Dr James Parkinson, London 1817
Parkinson’s:
prevalence and incidence
• One in 500 of general population (One in 50 is over 80s)
• 127,000+ cases in UK* (2020: 28% increase expected)
• Most diagnosed between the ages of 55-74
• Occurs in all ethnic groups
• Statistically slightly more men than women Men: 55% Women: 45%

1 in 20 diagnosed are under 40

* General Practice Research Database (GPRD) 2009


Speech Postural
Motor symptoms of Parkinson’s
instability
Hypomimia Micrographia
Reduced arm
Turning in bed
swing

Posture
Motor Turning

Tremor
symptoms Freezing

Arising from
of Parkinson's
Gait festination
a chair

Bradykinesia Shuffling gait

Rigidity Falls
Non-motor symptoms of Parkinson's

Neuropsychiatric Autonomic Sleep disturbance Sensory symptoms

Dementia REM sleep disorder


Depression RLS
Apathy Vivid dreams
Anxiety Daytime somnolence
Loss of libido Dystonia
Constipation
Urinary incontinence Pain
Erectile dysfunction Paresthesia
Excessive sweating
Postural hypotension
Excessive salivation
Non-motor
symptoms
Questionnaire
NICE Guidelines
If PD is suspected, a patient should
quickly be referred – untreated – to
a neurologist or to a geriatrician
with a special interest in
Parkinson’s

Referral time should be no more


than 6 weeks and should not
exceed 2 weeks in cases where the
condition is severe or complex
Control

Patient with
PD
Control

Patient with
Parkinson’s
Parkinsonism
Classic - idiopathic Parkinson’s (around 85% of cases)

Atypical - Parkinson’s plus syndromes


• Multiple-System Atrophy (MSA)
• Progressive Supranuclear Palsy (PSP)

Other Causes –
• Drug-induced Parkinson’s – neuroleptic
drugs/anti-emetics
• Post Encephalitic Parkinson’s
• Trauma
• Toxins
• Vascular parkinsonism
DRUG INDUCED PARKINSON’S
STOP All medications that cause Parkinson’s
Metoclopramide
Maxolon
Prochlorperazine
Flunarizine
Cinnarizine
Sodium Valproate
NB. Domperidone is an acceptable alternative for managing
nausea
Diagnosis of Parkinson’s: signs and
symptoms

• Slowness of movement (bradykinesia)


• Poverty of movement (hypokinesia)
• Difficulty starting a movement (initiation)
• Reduced size of movements (amplitude)
• Lack of co-ordination of movements (sequencing)

• Stiffness (rigidity)

• Tremor (rest)
Other features
Speech problems Constipation
Difficulties with balance Pain
Lack of facial expression Incontinence
Altered posture Dementia
Swallowing problems Depression
Handwriting problems Excessive tiredness
Motor freezing Sleep disorders

•Impact of non-motor symptoms often neglected


•Importance of referral to a consultant
The Impact of Parkinson’s -
Slowness of Movement
Affecting a person’s
“Learned Voluntary Actions”
The impact of Parkinson’s
• Motor symptoms
Slowness and poverty of movement/rigidity/tremor

• Non-motor symptoms

Many everyday activities are affected


The impact of Parkinson’s
Everyday activities that can be affected

Walking Eating Cooking


Washing Talking Climbing stairs
Household chores Dressing Going to the toilet
Driving Shopping Cleaning teeth
Dancing Gardening Playing sport
Enjoying hobbies Working Writing
Rising from a chair Having Sex Socialising
Getting out of bed Turning over in bed Answering the phone
Swallowing
From European Survey

84% of people with PD had swallowing problems

44% had lost weight in previous 12 months

60% ate less than normal

49% felt eating was not enjoyable

68% were embarrassed eating

70% were unaware this was treatable


The Impact of Parkinson’s
• Eating & swallowing difficulties • Constipation
• Drooling & Excessive • Incontinence
sweating • Handwriting
• Other fine movements
• Drop in blood pressure
• Pain
• Anxiety & Depression
• Turning over in bed
• Dementia • Tiredness/sleep disorders
• Sexual dysfunction • Tremor
• Falls
• Phychosis/hallucinations
• “Freezing”
• Smell/taste dysfunction
Everyone is Different
15 Minute Break
Impact of
Pa rk ins on ’s
The impact of Parkinson’s
Communication difficulties
How do we usually communicate effectively?

Words 7%
Tone/gesture 38%
Body language
55%

Mehrabian, A Silent messages: implicit communication of emotions and attitudes (1981)


Jean and I are laughing at the
same joke … “I am trying to smile but the rigid
muscles that are a symptom of
my Parkinson’s often make it
difficult. I am not being rude.
I am not being miserable. I have
Parkinson’s.”
Terry Kavanagh

… but I have Parkinson’s.


Communication Tips

Please GIVE PLENTY OF TIME

Please try not to appear rushed or angry

Find Quiet area / avoid large groups

Look the person in the eye, Eye contact is very important

Suggest words…but try not to interrupt

Don’t talk about / in front of them

Use adult language


The Impact of Parkinson’s -
Parkinson’s affects….

……relationships, mobility, deterioration, slowness, withdrawal from


activities, communication problems, motor fluctuations, involuntary
movements, confusion, depression, anxiety, hallucinations, memory
changes, constipation, incontinence, weight loss,
hypotension,swallowing problems, pain, loss of dignity, loss of
choice, isolation……
Managing
Pa rk ins on ’s
Managing Parkinson’s
Medication

Surgery (Deep brain stimulation,


Lesioning & Stem cell transplants)

Multidisciplinary Team
Physiotherapy

Speech & Language Therapy

Occupational Therapy

Pharmacist, Dietitian, Social worker


Physiotherapist

Education and support


for patient and carer
Pain management Early intervention

Teach compensatory Maximise functional


strategies and cueing ability and minimise
techniques secondary
complications6

Assessment & treatment


programmes for: Ultrasound for
Falls prevention • Gait Apomorphine nodules
• Balance
• Posture
Occupational Therapist

• Involved if there is difficulty with activities of daily living


• Maintenance of independence, safety and interaction within
own environment
• Comprehensive and holistic assessment and treatment of
functional activities of daily living and non-motor issues:

Practical assistance
• Self care (eating, drinking,
Emotional assistance
washing and dressing)
• Cognition
• Domestic activities (cleaning,
• Mood
shopping etc)
• Sleep
• Functional mobility, transfers
• Carer strain
and transport
• Advice and education
• Leisure and work
• Environment (ramps, rails)
Speech and Language Therapist

Can advise on:


• Speech
– Exercises and techniques to help PwP control
their breathing and pace their speech
– Lee Silverman Voice Treatment4
– Maintaining and improving the volume, clarity
and expression of the voice
• Body and environment
– Improving facial expression and body language
– Posture and positioning
– The best environment for speech and
communication
Deep Brain Stimulation Facts &
Figures
Deep brain stimulation costs:
£25,000 in the first year – this includes assessment, surgery and
follow up appointment.
£12,000 for a battery change – which is every 3-5 years
South Central region does 15 operations per annum
It is a postcode lottery
Half the patients selected for DBS are turned down – due to lack of
PCT funding, or not meeting the suitability criteria
Drug treatments for Parkinson’s

• Levodopa
• Dopamine agonists
• MAO-B inhibitors
• COMT inhibitors
• Glutamate antagonist
• Anticholinerginics
Levodopa = replaces missing Dopamine

Sinemet (Co-Careldopa) Madopar (Co-Beneldopa) Stalevo (Combination drug)

The most commonly prescribed

Dopamine Agonists = Directly stimulates parts of Brain where

Dopomine works
Bromocriptine (Parlodel) Pergolide (Celance) Cabergoline (Cabaser)
Pramipexole (Mirapexin) Ropinirole (Requip) Rotigotine (Neupro)
Apomorphine (APO-go)
MAO-B Inhibitors = blocks enzyme which breaks down Dopamine in the Brain
Selegiline (Eldepryl, Zelapar) Rasagiline (Azilect)
COMT Inhibitors = blocks an enzyme which breaks down Levodopa
Entacapone (Comtess) Tolcapone (Tasmar)
Anticholinergics = blocks messages to the Brain
Benztropine (Cogentin) Orphenadrine (Disipal) Procyclidine (Kemadrin, Arpicolin)
Trihexyphenidyl (Artane, Agitane, Broflex)
Others
Amantadine (Symmetrel)
Common medications
Levodopa is converted to dopamine and so replaces this substance which is in short supply in the
body. Sinemet ( co-careldopa)and Madopar (co-beneldopa) are the most common brands.
Both come in a variety of strengths
Both come in slow release formulations (which can not be crushed).
Only Madopar comes in a dispersible formulation
Stalevo is a combination of co-careldopa and Entacapone and is helpful for patients whose medication
“wears off”
Side effects -short term- nausea, postural hypotension, hallucinations
Long term- wearing off, difficulty maintaining optimal dose, involuntary movements (dyskinesia)
DOSAGE METHODS & SIDE EFFECTS
Most Drugs are TABLET form , CARE NOT TO CRUSH – controlled release Drugs, although Madopar may be dispersible

All P D Drugs have potential side effects inc. excessive day time sleepiness, nausea, postural hypotension, hallucinations,
impulsive behaviours, postural oedema

LEVODOPA = replaces missing Dopamine – (care in relation to mealtimes – protein inhibits absorption)

Sinemet (Co-Careldopa) Madopar (Co-Beneldopa) Are the most Commonly Prescribed Stalevo Combination drug

Dopamine Agonists = Directly stimulates parts of Brain where Dopomine works


Bromocriptine (Parlodel) Pergolide (Celance) Cabergoline (Cabaser) (Not often prescribed due to side effects re heart &
lung valves)

Pramipexole (Mirapexin) CAN NOW BE TAKEN AS A ONCE A DAY TABLET


Ropinirole (Requip) TABLET FORM CAN BE TAKEN ONCE A DAY
Apomorphine (APO-go) PUMP/SYRINGE Rotigotine (Neupro) PATCH
MAO-B Inhibitors = Blocks enzyme which breaks down Dopamine in the Brain
Selegiline (Eldepryl, Zelapar) Rasagiline (Azilect)
Anticholinergics = Blocks the Stillness messages to the Brain (acetylcholine)
Benztropine (Cogentin) Orphenadrine (Disipal) Procyclidine (Kemadrin, Arpicolin)
Trihexyphenidyl (Artane, Agitane, Broflex)
COMT Inhibitors = Blocks an enzyme which breaks down Levodopa
Entacapone (Comtess) Tolcapone (Tasmar)
Others
Amantadine (Symmetrel)
Common medications(2)
Dopamine agonists- these mimic dopamine at the receptor site helping to send the
signals to the muscles therefore relieving symptoms.
Ergot-derived such as Cabergoline, pergolide use with caution as increased risk
fibrosis in heart valves.
Non-ergot such as Ropinirole, Rotigotine, Pramipexole
Sub-cutaneous medication apomorphine (complex patients)
Transdermal patch option of Rotigotine may be an option when patient unable to
swallow.
Common side-effects- day time sleepiness, nausea, postural hypotension,
hallucinations, postural oedema and impulse control disorders.
Common medications (3)
Other groups include MAOB inhibitors (rasagiline, selegiline) and
COMT inhibitors (entacapone, tolcapone) and amantadine. COMT
inhibitors can cause gastro-intestinal disturbance.
Rivastigmine- for Parkinson’s disease dementia
Quetiapine- used for hallucinations
Long term
Drug therapy does not improve the disease progression, but it does improve the
patients quality of life.
70% of patients will get some cognitive decline. This may lead to a diagnosis of
dementia.
PD medications can cause hallucinations (but hallucinations can also be a
symptom of dementia.)
Potential deterioration in ability to perform ADLs
May require social support or care home
Challenges of medication

• “Honeymoon period”
• Fluctuations in response (‘on-off’ effect)
• Wearing off
• Nightmares/hallucinations/confusion
• Impulsive and compulsive behaviour
• Involuntary movements (dyskinesia)
Continuous Dopaminergic Stimulation
- CDS
ON

Dyskinesia

Efficacy

OFF
8 hours 4 hours 2 hours
Early Mid Late
Get it on Time – Case Study
I was promised in the first place that I could self-medicate but no way
would they let me. I was told pretty quickly that, to the staff my
medication times were inconvenient to say the least. When the
drugs trolley came round, they wouldn’t even let me have my dose
and hang on to them until it was time to take them.

They didn’t know what to do with me when my symptoms got worse,


which I did warn them would happen. I was off nearly all of the time
and what tablets I was taking had no effect at all…and my loo breaks
which were normally reasonably easy at home with help, became an
absolute nightmare.
Time the medication to suit the
individual
December 2011, in the JOURNAL OF ADVANCED NURSING has shown that nearly 40% of observed drug administrations involved
errors.

Daiga Heisters, Head of Professional Engagement and Education at Parkinson’s UK, commented: “It’s vitally important that people

with Parkinson’s get their medication on time, every time and we know this can be a particular problem when they are admitted to

hospital.
40% of Hospital Medicines ‘Involved an
Error’, Able Magazine, 02.01.12
“Overall, the most common error involved medicines being given
at the wrong time. Whilst in many cases it is unlikely that this
would cause any harm, it did include 18 of 49 doses of anti-
Parkinson’s medication being given over an hour late, which could
have led to patients with Parkinson’s not having their symptoms
adequately controlled and being unable to move, get out of bed or
walk down a corridor. […] Daiga Heisters, Head of Professional
Engagement and Education at Parkinson’s UK, commented: “It’s
vitally important that people with Parkinson’s get their medication
on time, every time and we know this can be a particular problem
when they are admitted to hospital.”
Access all available resources
General practitioner (GP)

Parkinson's UK Neurologist/ geriatrician

Parkinson’s specialist nurse


Social services

Person with
Carers’ organisations
Parkinson’s Physiotherapist
and carer
Parkinson’s UK
Occupational therapist
information and support
worker

Speech and language Dietician


therapist
th e P a r k i n s o n’s
We’re h a r ity.
ppor t a n d r e s e a r c h c
su n g
i tte d to fi n d i
We’re comm e
im p ro v in g l if
a cure and y
n e a ff ec te d b
for everyo
Parkinson’s
Parkinson’s UK
Since the PDS was founded in 1969, we have spent approximately
£45million on research
In 2009. we spent almost £4.2 million on research projects
The total research spend in 2009 was almost 22% of the total budget
In 2010 we aim to invest £4.6 million in ground-breaking research
projects (including the brain bank)
At present, we are supporting approximately 90 research projects worth
over £15 million¨    
In 2009 The Monument Trust, (A Sainsbury Family Charitable Trust)
Awarded the PD with the Monument Discovery Award to the sum of
£5million over five years for research.
A RESEARCHER, at the University of Southampton has just been
awarded a grant for £34,000 from the Parkinson’s UK to look at whether
non-invasive brain stimulation can help people with Parkinson’s to walk
and turn.
Using Parkinson’s UK as a resource

• Confidential helpline: 0808 800 0303

• Website: parkinsons.org.uk

• Information resources: parkinsons.org.uk/publications

• Professionals’ section of website and our Professionals’


Network: parkinsons.org.uk/professionals

• More than 360 local groups parkinsons.org.uk/localgroups

• Regional and country teams, including local information and


support workers: parkinsons.org.uk/localtoyou
Using Parkinson’s UK as a
Resource
Information for people with Parkinson’s and
professionals

Booklets and Videos

Up to 100 Factsheets

The Parkinson magazine

Professionals Packs

Website – www.parkinsons.org.uk
Local contacts
Local Parkinson’s UK groups

Parkinson’s specialist nurse

Parkinson’s UK regional or country team, including:


Information and support workers
Education and training officer
Regional manager
Information and Support Worker

Up to date information on Parkinson's

Emotional support

Info & help regarding benefits

Info and links to local services

A supporting voice

Links to the Parkinson’s UK services


Local Contacts
Information & Support Worker
Sue Thompson 0844 225 3759
Portsmouth Branch
Currently recruiting
Fareham Branch
Currently recruiting
Parkinson’s Nurse Specialist
Sandra Jury 02392 683450 Portsmouth
Linda Shaw 01329 224533 Fareham
Regional Manager
Caroline Bartlett 08442253670
Sudhansu
Contacts for North Hants
Information and Support Worker North Hampshire
Anne Denton
Tel: 0844225 3797
Farnborough group: 3rd Tuesday of month. 7.30-9.30pm
Day Centre adjoining Japonica Court. Shawfield Rd. Ash. GU12 6QX

Secretary: Lyn White 01252 657027


Chair: Alan McMichael 01252 512623
Alton group: 3rd Wednesday of month. 2-4pm
Alton Community Hospital. Chawton Park Road. Day room of Inwood ward
– 1st floor. GU34 1RJ

Secretary: Ginny Frith 01420 84732


Local Contacts
Information & Support Worker
Hampshire

Anne Denton T 08442253797 North


Rosemary Smith T 0844 225 3678 South
Southampton Branch
Mary Shorter 02380449652
Winchester Branch
Myra Clare 01962 883921
PD Nurse Specialist
Sheena Morgan 02380286404
Ann Martin 02380296214
Regional Manager
Caroline Bartlett 08442253670
Local Contacts
Information & Support Worker
Kay Andrews 0844 225  3676

Maidenhead/Slough Branch
Ray Peake 01628 488087

PD Nurse Specialist
Andrew Houghton 01753638783
& Debra Vincent Scott 01344623333 ext 7706

Regional Manager
Caroline Bartlett 08442253670
Local Contacts
Information & Support Worker
Rosemary Smith 07900405853

Romsey Branch/ Group


Penny Bonnor-Morris 01794 522283
Southampton & Southampton Early Onset
Mary Shorter 02380 449652

PD Nurse Specialist
Ann Martin 02380 296214
PD Nurse Specialist Lyndhurst
Sheena Morgan 02380 286404
Regional Manager
Caroline Bartlett 08442253670
Local Contacts
Information & Support Worker
Rosemary Smith 07900405853

Isle of Wight Branch/ Group


Ron Tweedie 01983 884913

PD Nurse Specialist
Carolyn McCormack 01983 552469
 
Regional Manager
Caroline Bartlett 08442253670
Local Contacts
Information & Support Worker
Rosemary Smith 07900405853

Isle of Wight Branch/ Group


Ron Tweedie 01983 884913

PD Nurse Specialist
Carolyn McCormack 01983 552469
 
Regional Manager
Caroline Bartlett 08442253670
LOCAL CONTACTS
Information & Support Worker

Anne Denton T 08442253797 North Hants


Basingstoke Branch
Stuart Banks 01256 364653
PD Nurse Specialist
 Pat Dixon T 01256376476
Regional Manager
Caroline Bartlett 08442253670
LOCAL CONTACTS
Information & Support Worker
Berkshire
Ann Jefferies Berks West 0844 2253758
Sarah Dolan Berks West 0844 2253677
Delia Wells Berks & Oxford 0844 2253679
Bracknell Branch Newbury Branch
Ellen Pirie 01344 481759 Eric Rein 01635 600330
Reading/Newbury PEPs (younger)
Briony Cooke 01189 574939
PD Nurse Specialist
 Karen Guy RG1 01183226855
Laura Witchalls RG41 (PT) 01635876272
Regional Manager
Caroline Bartlett 08442253670
Local Support Isle of Wight
Local Branch
The Isle of Wight branch offers the chance for you to meet other people affected
by Parkinson’s on the island, get information and take part in activities on offer.
For more information, contact Ron Tweedie on 01983 884913.
Parkinson’s Nurse Specialist
The Parkinson’s Nurse Specialist is a community based nurse who has received
extra training in the management of Parkinson’s. Her role is to support people
with Parkinson’s, their families and/or carers. Contact Carolyn McCormack on
01983 552469 or email IWPDNS@iow.nhs.uk
Information and Support Service
The Isle of Wight Information and Support worker provides one-to-one
information and support including benefits advice, emotional support and links to
services.
Contact Rosemary Smith on 0844 225 3678 (local rate) or email
rsmith@parkinsons.org.uk
Parkinson’s UK confidential helpline
0808 800 0303 (free-phone)
Local Contacts
Information & Support Worker
Kay Andrews 0844 225  3676

Maidenhead/Slough Branch
Ray Peake 01628 488087

PD Nurse Specialist
Andrew Houghton & Debra Vincent Scott
01753 638783 01344 623333
Regional Manager
Caroline Bartlett 08442253670
LOCAL CONTACTS
Information & Support Worker Andover & Newbury
Ann Jefferies 0844 2253758
Petersfield Branch/ Group
Gill Puttick 01428 725235
Andover Branch/ Group
Jean Pittfield 01264 735343
PD Nurse Specialist
Pat Dixon Basingstoke 01256 376476
Regional Manager
Caroline Bartlett 08442253670
LOCAL CONTACTS
Information & Support Worker
Anne Denton 0844 2253797
Farnborough Branch
Alan F McMichael 01252 512263
PD Nurse Specialist
 Tessa Bennett T01483783481 no longer in area
Regional Manager
Caroline Bartlett 08442253670
LOCAL CONTACTS
Information & Support Worker
Anita Browne 0844 225 3675
Milton Keynes Branch
Pamela Purton 01908 583562
PD Nurse Specialist
 Peter Smith 01908650425
Liz Scott 01494 425788
Regional Manager
Caroline Bartlett 08442253670
Local Contacts
Information & Support Worker

Delia Wells 0844 225 3679

Oxford Branch/ Group


Campbell Ferguson 01865 331704
Banbury Branch
Mick Terry 01295710822

PD Nurse Specialist
Angela Weir 01885234048
Jackie Burnham 01295819112 
Regional Manager
Caroline Bartlett 08442253670
Local Contacts
Information & Support Worker
Anita Browne 0844 225 3675
Aylesbury Branch
Dorothy Clark 01280 848094
Amersham Branch
David Besley 01494 813117
Milton Keynes
Pamela Purton 01908 583562
Parkinson’s Nurse Specialist
Liz Scott 01494 425788
Regional Manager
Caroline Bartlett 08442253670
C a se S t ud ies
The cases:
what needs to be done?
Looking at the case studies, identify:

• The challenges and difficulties

• How you could help, or who could you refer on to,


to meet each need and improve quality of life?
Issues to consider :
Communication
Mobility/dexterity
Personal/emotional/social
Financial
Carer’s needs
John
John is 68 years old and has had Parkinson’s for several years. He takes a number of medications,
several times a day to control his symptoms.
John wants you to know some of the challenges he faces on a typical day and wonders if there is
anything you can do to help.
The consultation starts badly; John seems to be stuck in the doorway and is unable to move for
several minutes. When he eventually sits down and starts to talk to you his voice is very quiet and you
do not hear all that he is saying. You begin to wonder if he understands everything you are saying to
him as he often takes a long time to respond to your questions.
John tells you that he has problems going to the toilet and that he seems to be constipated most of the
time. He consequently spends a lot of time sitting on the toilet but when he gets up he often feels dizzy
and has been known to fall back down again. He admits he has also fallen over on several occasions
when out and about. His dizziness, sudden freezing and fear of falling have made him very nervous of
going out at all. He says he especially hates being in town or where there might be crowds of people.
He is tired for most of the day yet he has real problems sleeping at night; he frequently wakes and
can’t get back to sleep as he feels stuck to the bed. His wife is losing sleep as he has to nudge her to
wake and help him to turn over.
John also gets a lot of pain, particularly around his shoulders. He says it often starts around the back
of his neck and seems to spread to the back of his head and his shoulders.
He admits to you that whilst he had always been a positive person and initially resolved that he would
not let Parkinson’s ruin his life, he now feels he is a burden to his wife and family and wonders if there
is any point in carrying on with life.
Mary and Gerald
Mary is 60 and is married to Gerald, 65. Gerald has had Parkinson’s for over 5 years and takes a
number of medications to help control his symptoms.
Mary wants you to know some of the challenges they face on a typical day and wonders if there is
anything you can do to help.
Mary tells you that Gerald has deteriorated noticeably over the past few months. He is now becoming
incontinent which seems worse at night when he often wakes wanting to go to the toilet but is so slow
that he is unable to get the toilet in time.
Mealtimes are now very difficult as he seems to have trouble swallowing his food, often coughing and
choking whilst he eats. To make mealtimes even worse he often dribbles food and drink from his
mouth. Mary says that between meals he also has a tendency to dribble down his chin which is not
only embarrassing for Gerald but means his chin is very sore most of the time.
She says he is always complaining that she is going deaf and says that she does not listen to him
anymore.
Mary then tells you that she is starting to get concerned about his behaviour. He has recently started
making sexual advances to her in a way he has never done before, suggesting things that make her
feel uneasy. He has actually started making inappropriate sexual comments to other women which he
doesn’t seem to notice are offensive.
Mary then admits to you that she thinks he is starting to become senile. She says he sometimes
forgets where he is and does not seem to even recognise her. She ends her tale in tears and says that
she has had enough.
Case Study - Bert
Bert is 80 years old and has had Parkinson's Disease for 15
years. Elsie, his wife, has been caring for Bert throughout
although suffering from painful arthritis and having had a hip
replacement operation eighteen months ago.
Lately things seem to have been deteriorating. Bert
complains that she is going deaf and does not listen to him
anymore. He is frustrated with double vision and increasing
difficulty in getting around. More and more he seems to be
“freezing” for no apparent reason. No matter how hard Elsie
pushes and pulls him she is unable to free him up.
Elsie confided in a friend last week that she thought Bert
was suffering from dementia. She said she was at the end
of her tether and wanted to end it all.
Case Study - Joan
Joan is an 86 year old single lady who has had Parkinson's for 18
years. A retired dance teacher who ran her own dance school, she
is an intelligent, albeit temperamental, individual. Three years ago
she made the move into full time care. Although this move resulted
in a loss of independence, she settled in well, was popular and
good company for the other residents.
Lately she has not been her old self; she seems depressed, has
lost her appetite, and is complaining of insomnia and fitful sleep
with nightmares and hallucinations. The staff fear she may be
dementing but some days she seems on good form and able to
cope.
Yesterday Joan had a fairly serious fall when another resident
attempted to hurry her along the corridor. At the time, Joan was
frozen to the spot and could not move. Joan has now completely
withdrawn inside herself and has not talked to anyone.
Case Study - Fred
You regularly provide care at the home of Fred and Doris. Fred is 68 years old and lives
with his 70-year-old wife, Doris. Fred has had Parkinson's for over seven years and
takes a number of medications several times a day to help control his symptoms.
Whilst looking after Fred in his home, you have noticed that he is excessively messy
when eating, spilling food on the floor due to a lack of control of his limbs, and between
meals he has a tendency to dribble down his chin. He is unaware of this, but Doris
hates it. His chin is very red and fiery.
Fred has little apparent quality of life and in the last two years has given up his lifelong
hobby of golf. Doris is tired most of the time because she has to help him out of bed to
the toilet at least once a night. They have had to move into separate beds as Fred has a
tendency to kick and punch out in his sleep. He constantly complains of constipation.
Recently he has been ‘seeing’ people who are not there and occasionally talks to them,
which can be embarrassing in company. He also sometimes makes unacceptable
sexual comments to female visitors. Many friends have now given up visiting because
they can’t cope with his behaviour.
A situation arose recently while you were looking after Fred. He was unable to remove
his tablet from the blister pack and he asked you to do it for him. As your manager has
told you that care staff must not help clients with their medication you had to refuse and
contact his GP Practice Nurse. The nurse arrived two hours later, and by then Fred was
very immobile. On her return, Doris became very distressed at the whole situation and
can’t understand what the problem could have been.
Case Study - Fred
You regularly provide care at the home of Fred and Doris. Fred is 68 years old and lives
with his 70-year-old wife, Doris. Fred has had Parkinson's for over 7 years and has
been taking a number of medications, several times a day to control his symptoms.
Whilst looking after Fred in his home, you have noticed that he is excessively messy
when eating; spilling food on the floor due to a lack of control of his limbs and between
meals he has a tendency to dribble down his chin. He is unaware of this, but Doris
hates it. His chin is very red and fiery.
Fred has little apparent quality of life and in the last two years has given up his lifelong
hobby of golf. Doris is tired most of the time because she has to help him out of bed to
the toilet at least once a night. They have had to move into separate beds as Fred has a
tendency to kick and punch out in his sleep. He constantly complains of constipation.
Recently he has been “seeing” people who are not there and occasionally talks to them,
which can be embarrassing in company. Many friends have now given up visiting
because they cannot cope with his behaviour.
A situation arose recently while you were looking after Fred. He was unable to remove
his tablet from the blister pack and he asked you to do it for him. As your manager has
told you that care staff must not help clients with their medication you had to refuse and
contact his GP Practice Nurse. The nurse arrived 2 hours later, by when Fred was very
immobile. On her return, Doris became very distressed at the whole situation and can’t
understand what the problem could have been.
Case Study - Tom
Tom is 74 and has had Parkinson's for six years. He moved into a local
residential home six months ago after his wife died.
Tom seems to cope fairly well most of the time but at night he is often
distressed and attempts to wander. He is now often confused and
hallucinating. He thinks nets cover his body and particularly his mouth.
He has difficulty swallowing, often choking.
Meal times are difficult and staff find him very challenging. He is slow
drinking and often refuses solid food saying he is worried that he will
choke. He pushes the food around his plate. He is now trying to avoid the
dining hall and the other residents, having previously appeared to enjoy
their company.Tom was noted as having been a messy eater. His
dentures are ill fitting, making chewing difficult at the best of times.
The staff have asked that he sees a consultant specialist, but the GP
insists that this is unnecessary as he has always treated Tom. Tom has
also asked to see a specialist.
At a recent staff meeting, great concern was expressed about Tom. He
has lost weight and generally he appears to be deteriorating.
Case Study - Tom
Tom is 74 and has Parkinson's disease. He moved into a local residential
home six months ago after his wife died.
Tom seems to cope fairly well most of the time but at night he is often
distressed and attempts to wander. He is now often confused and
hallucinating. He thinks nets cover his body and particularly his mouth.
He has difficulty swallowing, often choking.
Meal times are difficult and staff find him very frustrating. He is slow
drinking and often refuses solid food saying he is worried that he will
choke. He pushes the food around his plate. He is now trying to avoid the
dining hall and the other residents, having previously appeared to enjoy
their company.Tom was noted as having been a messy eater. His
dentures are ill fitting, making chewing difficult at the best of times.
The staff have asked that he sees a consultant specialist, but the GP
insists that this is unnecessary. Tom has also asked to see a specialist.
At a recent staff meeting, great concern was expressed about Tom. He
has lost weight and generally he appears to be deteriorating.
Case Study - Ahmed
Ahmed has been a resident in a local care home for six months. He has had
Parkinson’s for eight years. His wife died nine months ago and his family are
all abroad. He copes well but is getting slower and often sits alone. Staff have
recently changed and newer care staff find him difficult. He constantly
demands his tablets at set times and these do not fit their routine.
At mealtimes, Ahmed is very slow and a new staff nurse has decided that, as
he is being deliberately uncooperative, he will not be allowed to go on outings
if he cannot finish meals with the other residents. He loves puddings but often
these are served while he is still eating his main course. Eating can be messy
and food often escapes from his mouth. He is now choking a lot. Other
residents are complaining of sitting with him. They are afraid of his choking and
they dislike the mess, so staff have arranged that he eats alone. Ahmed loves
the bus outings but is now rarely included.
Recently, getting to the toilet is becoming a problem, particularly at night. He
often ‘freezes’ in the corridor or seems to be stuck in the toilet. Staff have now
decided that he may need night-time catheterisation. However, a pattern has
emerged which they do not understand - he rarely has problems when Team C
is on duty and they find him co-operative and often chatty.
Case Study - Ahmed
Ahmed has been a resident in a local care home for six months. He has had
Parkinson’s for eight years. His wife died nine months ago and his family are
all abroad. He copes well but is getting slower and often sits alone. Staff have
recently changed and newer care staff find him difficult. He constantly
demands his tablets at set times and these do not fit their routine.
At mealtimes, Ahmed is very slow and a new staff nurse has decided that, as
he is being deliberately uncooperative, he will not be allowed to go on outings
if he cannot finish meals with the other residents. He loves puddings but often
these are served while he is still eating his main course. Eating can be messy
and food often escapes from his mouth. He is now choking a lot. Other
residents are complaining of sitting with him. They are afraid of his choking and
they dislike the mess, so staff have arranged that he eats alone. Ahmed loves
the bus outings but is now rarely included.
Recently, getting to the toilet is becoming a problem, particularly at night. He
often “freezes” in the corridor or seems to be stuck in the toilet. Staff have now
decided that he may need night-time catheterisation. However, a pattern has
emerged which they do not understand; He rarely has problems when Team C
is on duty and they find him co-operative and often chatty.
Case study - Annie
Annie is 58, and lives alone at home. She was diagnosed with Parkinson’s nine years ago.
She worked as an office cleaner until three years ago, when she had to retire due to her
deteriorating health. She is on a very low income, and her home is a private rented flat with
poor facilities. She has no surviving family.
She is struggling to look after herself, has reluctantly accepted some home care, but care
staff find her behaviour very challenging at times. She often has very extreme mood
swings, and gets very annoyed when she says staff are not helping her to take her
medication on time. Staff have also often found her obsessively re-arranging her clothes in
her wardrobe, and repeatedly doing this. There have been occasions recently when new
staff have not been fully aware of her medication needs. Some staff have also commented
to their manager that at times they think Annie could well manage to do more herself, and
arrive to find her very active and apparently quite self sufficient.
Staff are particularly concerned about her hallucinations which she finds very frightening.
She rarely goes out and has a poor diet of ready meals. She is often very constipated, and
also complains about the problems she has turning over in bed. Most mornings she has
pain in her limbs and around her shoulders.
As far as you are aware she last saw a consultant neurologist over a year ago, and has not
had any support from other health professionals.
How you can make a difference
• Encourage appropriate referrals: consultant/therapists/Parkinson’s
nurse/Parkinson’s UK

• Understand fluctuations

• Recognise the ‘on-off’ phenomenon

• Respond to changing care needs

• Maintain their routine and make sure patients get their


medication on time – Get It On Time

• Remember that everyone is different


Karen
“Look beyond the mask”

“Give a little more time!”


Appropriate care to stage, not age
Parkinson’s is considered in stages, each stage has different
management issues and priorities:
1.diagnosis
2.maintenance
3.complex
4.palliative
The key message is to consider the person and their stage of
Parkinson’s in light of their abilities and their needs.
Park in so n ’s U K

’s
We’re the Parkinson
charity.
support and research

e ’r e c om mit ted to finding


W
life
a cure and improving

e affec te d b y Pa rk in son’s
for everyon
Common medications
Levodopa is converted to dopamine and so replaces this substance which is in short supply in the
body. Sinemet ( co-careldopa)and Madopar (co-beneldopa) are the most common brands.
Both come in a variety of strengths
Both come in slow release formulations (which can not be crushed).
Only Madopar comes in a dispersible formulation
Stalevo is a combination of co-careldopa and Entacapone and is helpful for patients whose medication
“wears off”
Side effects -short term- nausea, postural hypotension, hallucinations
Long term- wearing off, difficulty maintaining optimal dose, involuntary movements (dyskinesia)
Common medications(2)
Dopamine agonists- these mimic dopamine at the receptor site helping to send the
signals to the muscles therefore relieving symptoms.
Ergot-derived such as Cabergoline, pergolide use with caution as increased risk
fibrosis in heart valves.
Non-ergot such as Ropinirole, Rotigotine, Pramipexole
Sub-cutaneous medication apomorphine (complex patients)
Transdermal patch option of Rotigotine may be an option when patient unable to
swallow.
Common side-effects- day time sleepiness, nausea, postural hypotension,
hallucinations, postural oedema and impulse control disorders.
Common medications (3)
Other groups include MAOB inhibitors (rasagiline, selegiline) and
COMT inhibitors (entacapone, tolcapone) and amantadine. COMT
inhibitors can cause gastro-intestinal disturbance.
Rivastigmine- for Parkinson’s disease dementia
Quetiapine- used for hallucinations
Long term
Drug therapy does not improve the disease progression, but it does improve the
patients quality of life.
70% of patients will get some cognitive decline. This may lead to a diagnosis of
dementia.
PD medications can cause hallucinations (but hallucinations can also be a
symptom of dementia.)
Potential deterioration in ability to perform ADLs
May require social support or care home
Vascular Parkinsonism
main symptoms of Parkinson’s – tremor, rigidity and slowness of movement – are also the main symptoms of a
number of conditions that are grouped together under the term ‘parkinsonism’. Parkinson’s disease is the most
common form of parkinsonism and is sometimes referred to as idiopathic Parkinson’s disease (IPD), which
means its cause is unknown. This accounts for only about 85% of all people with parkinsonism.
However, if specialists see someone with unusual symptoms or someone who is not responding to anti-
Parkinson’s drugs, they may take these as pointers that the person might not have IPD and will investigate
further. When this is the case, the term ‘atypical parkinsonism’ is often used. See the PDS information sheet
Parkinsonism.
Vascular, or arteriosclerotic, parkinsonism (VP) is one of the atypical forms of parkinsonism. The most important
risk factors for developing VP are hypertension and diabetes, but a cerebrovascular accident, cardiac disease or
carotid artery pathology are probably also involved in the development of VP.
In the classical type of VP, difficulty in walking is the most important initial complaint. Therefore, the classical type
is also called lower-half or lower-body parkinsonism. The gait disorder associated with this condition is
characterised by shuffling, short steps, start and turn problems, and moderate balance problems. Additionally,
people with VP usually swing their arms less than those with IPD.
The following symptoms may also occur: hypomimia (reduced facial expression), articulation or swallowing
problems, cognitive problems and incontinence of urine or faeces. When the disease progresses, more severe
and generalised signs of VP may occur, and may also involve the upper body.
In one European study, VP was present in only 3% of all patients with parkinsonism, but it is likely that the real
figure is higher.
Additional diagnostic techniques
It is hoped that there will be advances in some diagnostic techniques in the near future to assist doctors in
diagnosing VP and reduce the numbers of people who are misdiagnosed. These techniques include MRI brain
scanning and DaT SPECT SCAN or DaTSCAN. Further information on DaTSCAN can be found in the PDS
information sheet Scans and Parkinson’s.
None of these tests alone can make a definitive diagnosis of VP. However, sometimes, they exclude a diagnosis
of VP and, sometimes (either used alone or combined as a ‘battery’ of tests), they can strengthen the case for it,
but only when considered together with the person’s medical history and clinical findings.
Every hour, someone in the UK
is told they have Parkinson’s.
Because we’re here, no one has to face Parkinson’s alone
We bring people with Parkinson’s, their carers and families together via our network of local groups
Our website and free confidential helpline
Specialist nurses, our supporters and staff provide information and training on every aspect of Parkinson’s
As the UK’s Parkinson’s support and research charity we’re leading the work to find a cure, and we’re closer
than ever
We also campaign to change attitudes and demand better services
Our work is totally dependent on donations
Help us find a cure and improve life for everyone affected by Parkinson’s

Parkinson’s UK
Free* confidential helpline 0808 800 0303
(Monday to Friday 9am–8pm, Saturday
10am–2pm). Interpreting available.
Text Relay 18001 0808 800 0303
(for textphone users only)
hello@parkinsons.org.uk
parkinsons.org.uk
Education delivered for year -
running total at:31 December 2012
1. Summary figures 1350
= Total number of sessions delivered so far this year 17990
= Total number of people educated 1295
= Total number of nursing and care homes educated 186
= Total number of general practices educated 392
= Total number of actual GPs educated 876
= Total number of domiciliary care agencies educated 1393
= Total number of social care assessors educated 347
= Total number of sessions delivered by volunteer educators
2. Detailed breakdown by region
Education sessions delivered
North East 61 North West 68
Yorkshire & Humber 91 West Midlands 76
East Midlands 86 Eastern England 86

South West 126 South Central 123


South East 26 London 58
Scotland 57 Northern Ireland 69
Wales 76
Other Total sessions delivered 1003
2. Detailed breakdown by region cont/…

Number of participants educated


North East 692 North West 992
Yorkshire & Humber 1316 West Midlands 1078
East Midlands 1677 Eastern England 1147

South West 1779 South Central 1851


South East 375 London 959
Scotland 863 Northern Ireland 1155
Wales1105
Other Total educated 14989