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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
Close
Parkinson’s: overview
• Progressive
• Fluctuates
• Currently no cure
• Not contagious
• 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
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%
Posture
Motor Turning
Tremor
symptoms Freezing
Arising from
of Parkinson's
Gait festination
a chair
Rigidity Falls
Non-motor symptoms of Parkinson's
Patient with
PD
Control
Patient with
Parkinson’s
Parkinsonism
Classic - idiopathic Parkinson’s (around 85% of cases)
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
• 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
• Non-motor symptoms
Words 7%
Tone/gesture 38%
Body language
55%
Multidisciplinary Team
Physiotherapy
Occupational Therapy
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
• Levodopa
• Dopamine agonists
• MAO-B inhibitors
• COMT inhibitors
• Glutamate antagonist
• Anticholinerginics
Levodopa = replaces missing Dopamine
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
• “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.
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)
Person with
Carers’ organisations
Parkinson’s Physiotherapist
and carer
Parkinson’s UK
Occupational therapist
information and support
worker
• Website: parkinsons.org.uk
Up to 100 Factsheets
Professionals Packs
Website – www.parkinsons.org.uk
Local contacts
Local Parkinson’s UK groups
Emotional support
A supporting voice
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
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
PD Nurse Specialist
Carolyn McCormack 01983 552469
Regional Manager
Caroline Bartlett 08442253670
Local Contacts
Information & Support Worker
Rosemary Smith 07900405853
PD Nurse Specialist
Carolyn McCormack 01983 552469
Regional Manager
Caroline Bartlett 08442253670
LOCAL CONTACTS
Information & Support Worker
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
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:
• Understand fluctuations
’s
We’re the Parkinson
charity.
support and research
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