Transcript Diapositive 1 - Pakistan Parkinson`s Society

Pakistan Parkinson’s Society
World Parkinsons Day…April 10, 2008
About Parkinson’s
Presenter
Haroon Basheer
Chairman PPS
The Red Tulip, our symbol of hope
The way we are...
Practical management
of
PARKINSON’S DISEASE
FOR EVERYBODY:
People with Parkinson (PwP),
their families, caregivers,
health-care workers.
Parkinson’s Disease (PD):
A very complex illness,
« that lasts for a lifetime »
for which there is no cure
but medications that reduce
the variable and
intermittent symptoms.
Treatment must constantly
be adjusted, following the
progression of the disease
in order to regain and maintain
THE PROPER BALANCE
PD is NOT
“ONLY”
a MEDICAL PROBLEM
but also a
FAMILY,
SOCIAL AND
PROFESSIONAL PROBLEM
This is why
P.D requires the intervention of a
MULTIDISCIPLINARY
THERAPEUTIC
TEAM
BETTER UNDERSTANDING
makes for
BETTER HELPING
SYMPTOMS
and
IMPORTANT FACTS
to consider
The three main symptoms
Trembling (shaking) at rest
Slowness or impossibility to move
Stiffness (rigidity) with hypertonia :
Stiff body, thorax bending forward, rigid arms and legs
PwP decreased facial
expression gives a sad look
or as if ‘elsewhere’
In fact,
mind and understanding
are absolutely normal.
A PwP is a
“prisoner in his own body”
Communication impairment leads to
marginalisation,
family and social isolation…
OTHER SYMPTOMS
Loss of balance
Fatigue
Pain
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1
Frequent falls
Often disproportionate, always very disabling
Frequent, disrupting every day life
OTHER SYMPTOMS
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Difficulty reading, watching television, playing games
Visual problems
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Voice problems
Orthostatic Hypotension
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Communication impairments
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Dizziness when standing
Other symptoms
3
Digestive Problems
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Urinary problems
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Incontinence or urgent needs (in both sexes)
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Seborrhea
Painful and occasionally severe constipation
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Greasy skin and scalp
Other symptoms
Sleep disorders
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No regular sleep pattern
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Relationships difficult to maintain
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Psychological troubles
Mental problems
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Rare ( 15% of cases) and in the late
stages of P.D
All these symptoms
Vary with each person
“As different P.D as many PwP"
Vary during the day
Alternating on-off, autonomy-disability
Vary with PD evolution
Symptoms worsen as time goes on
All these symptoms
Lead to more or less disability
in everyday activities
Require more and more help
as the illness worsens
and very cooperative care-givers
as to limit stress which emphasizes the symptoms for the PwP
A very special patient
Treatment must be often reevaluated
Disabilities are variable and intermittent
On - off motor fluctuations and freezing
Involuntary movements : dyskinesia and
dystonia
A very special patient
to help
at times as
a very disabled person
but
whose autonomy
must be respected
when able to cope on herself
P.D means
having a safe mind
prisoner of own body
…
Stiffness and akinesia
« Like walking upstream wearing a chain-mail outfit»
Shaking
" Shaking is not only embarrassing. It also means :
•Not being able to turn pages
•Having to try over and over again before managing a
button or being able to bring a spoon up to your
mouth…
•Making a mess when eating….
•Hardly coping with a knife and a fork…
•Being unable to punch in a telephone number…
•Working very hard in order to shave or put on makeup, or getting to the bathroom in time …. "
Dyskinesia and dystonia
« Constant involuntary movements are
exhausting, sometimes painful and make it difficult
to keep in touch with people »
Symptoms " come and go"
off = stiffness
«like a statue»
on = normal
mobility
off = back to
being a statue
Fluctuations, On-Off
« Being perfectly normal and suddenly go for major motor
problems as if a switch has been turned off »
Speech impairment
Weak voice with no intonation
Monotonous and sad-sounding
!!!!!!!!!!
???
Problems to communicate
Weariness and fatigue
" Fatigue is unbelievable!
I feel often exhausted for no reason "
Loss of automatic movements
No doubt about it!
Energy needed for
simple movements may
reach a huge level!
« Every day movements no longer come naturally, every action
has to be thought out as if you are doing it for the first time »
"Obvious Aberrations"
Movements responding to
a simple brain command are possible.
a complex or automatic brain command are
impossible.
For someone ignorant of PD, it looks like an aberration that
Walking is hard with small
steps and feet stuck to the
earth
Going through a doorway
is difficult
Walking up or downstairs
is easy
but
Dancing or running
can be easier !
"Aberrations"
+
" He’s not really
"It’s almost as
that sick,
I
if she were
Variability of symptoms
think
trying to make
he’s trying
sure we don’t
to fool
forget
she’s got
Makeus."
some people think
PwP are
PD."
=
faking some problems or
at least exagerating them
PD seen from the outside
•Some people will really think you’re faking it.
•Absent facial expression looks as bad mood .
•Slowness can exasperate some people.
•Constant adaptation to ‘new’ conditions is
required
« Like theatre»
Indeed, ‘Madam’, would you stop complaining,
I saw you this morning, walking, almost running!
And now, all of a sudden, you’re ringing your bell
Need help to get up because not feeling well?
Don’t try to tell me you’re really that bad,
Give me a smile, stop looking so sad…
You’re nothing but a drama queen
You’re not that sick, I know what I’ve seen!
PD’s scowl
« I love to laugh and to make people laugh…humour is a
necessary element in my life… but sometimes people think
I’m in a bad mood, and avoid me. »
PD’s slowness
« Please be patient. I need more time!»
Constant need of adaptation
« Just as I think it’s stabilized, my condition changes and I’m
afraid, once again, of not being able to do for myself.
Eventually, the fear of failing brings on fear of trying…
Changing conditions
« PD means ‘forgetting’ simple everyday things
you’ve been doing automatically for years…
•Brushing your teeth, combing your hair,
•Getting dressed, putting on jewelery,
•Writing a letter, putting the stamp on the
envelope,
•Making yourself understood when you talk,
•Opening a box or a yogourt,
•Eating without making a mess, etc…… »
Depression and anxiety
Related to
the condition
or as a reaction
to PD
Disruption in sleep patterns
Sleepless
at night
drowsiness
during the
day
PD
and
medication
Medical treatment
« All these pills!!
Are you sure you need them all??»
Medical treatment
Different types of medication
Caracterized by
precise action
duration of the effect
particular side-effects
Medical treatment
The patient’s well-being is changing and will
depend on:
taking the pills as prescribed
taking the pills on time
taking the pills at the right time according with meals
Caretakers
must first question the patient,
then listen to the answers
and take into account
the particular reactions
of each patient’s treatment
PwP
must then re-adjust
to the new prescriptions
Time-tables, dosages
PwP must report
any and every
effect of the treatment.
All variations of the general
condition of the PwP
must be noted and taken into
consideration.
Some tips
for caregivers or families
of PwP at an advanced stage
Schedules and medication
Personalized
schedules
For each person:
According to age
According to PD’s severity
Depending on the type of medication prescribed.
Time-tables MUST be
respected almost to the minute!
Any delay, even seemingly unimportant
may bring on major problems that last
much longer that one would expect
Meal-times and
medication
Meals and L-DOPA (1)
Modopar, Sinemet
If normal formula
or
At least ½ hour before eating
1 to 2 hours after eating
If CR formula
must be taken when prescribed
can be taken with a meal or snack
Meals and L-DOPA (2)
Modopar, Sinemet
ONLY if the patients has on/off
motor fluctuations :
Low protein diets for breakfast and lunch
Daily recommended protein intake
to be taken with the evening meal
Protein diminish L-Dopa
absorption.
Carbohydrates increase L-Dopa
absorption.
The importance of
health care professionals
Help is most needed
At the beginning and ending of every day
For getting in or out of bed, for getting dressed or
undressed and washing
During meal-times
For getting around
All the while encouraging
the PwP to do for himself
as much as possible !
Other things to check:
Swallowing problems
medication taken on time?
hydratation ( PwP must drink at least 1.5 litres of
water a day).
Important tips
Important tips
Do not hurry
Stress emphasizes pre-existing problems
Do not push
Do not pull
It increases the risk of falls
Be careful not to ‘forget’ the PwP
in his armchair or bed!
Stimulate as you help the patient to get around.
Try to plan the day’s activities around the
PwP’s better moments.
First thing in the morning
Help intake or administer the first pills of the day,
often before the PwP even gets up.
Help the PwP
to get out of bed
Wait for the medication
to take effect
Don’t pull by the arms
Support under the axilla
Before breakfast
Before washing
Before getting dressed
After breakfast
Be available to help
brushing teeth
shaving
bath or shower
You will probably
have to help
dressing
with buttons
putting on shoes
Never leave a PwP standing on his own
without security
Meal-time tips
Help directly
or
at least verify
that the PwP is sitting up straight and
that his back is well supported
so that he is
solid and secure.
Meal-time tips (2)
Beware of
problems with swallowing
Offer gelified water if necessary.
Offer ice cubes to suck on 20 minutes before eating.
Bring chin down to help swallowing.
Keeping mouth closed,
breathe in and out through the nose before swallowing.
Meal-time tips (3)
Avoid boiling-hot foods.
(especially if the PwP has trouble drinking or spitting)
Use unbreakable dishes and glasses.
Cups with large handles (instead of bowls) will be appreciated!
Plastic straws make drinking easier.
With bowls instead of plates, ‘running’ after a morsel is easier.
Help with walking (1)
Don’t forget: gait troubles may vary during the day.
Ask the PwP (or the usual helper)
exactly how much help is needed.
Help with walking (2)
PAY ATTENTION TO
FREEZING
Feet seem
glued to
the floor
Body topples
forward
And fall
happens!
Help with walking (3)
If there is freezing
Put your foot crossways in front of the PwP
stepping over the obstacle will restart walk
Have him concentrate on a line on the floor and step over it
Try to keep some kind of rhythm walking.
Counting loudly helps steps performance
Help with walking (4)
Risk of freezing
Going through doors, narrow entrances,
down hallways, getting into elevators.
No rapid change of direction
No U-turn
Keep walking normally and turn widely
No tiny steps
Help with walking (5)
Walking will be
often easier
Help with walking (6)
Do not push or pull on the PwP
Do not hurry, let him take his time
If there is a risk of falls
it would be better to
support the arm by holding on to the elbow,
keep a rhythm by counting steps or singing!
Concentrate only on walking, one step at a time…
PD is NOT easy
to deal with
For the person with the illness,
for families and friends,
for health workers or other helpers.
A whole
“magic team”
is required
Neurologist, family doctor,
physiotherapist, speech therapist,
psychologist, nurses and nurses aids
social workers, financial advisor,
and anyone else who is willing, able
and available !
The PwP needs to have a hospital or clinic with
specialists that will help him live as normal a life
as possible, depending on the conditions and
particularities of his PD.
If at all possible, he should be seen by the same
people at each visit.
Treatment options and coordination of
medication should be discussed with the team
members and the PwP.
Never give up !!
On-going research may soon offer
answers as to the cause and eventually,
even a possible cure for PD.
THANK YOU
Pakistan Parkinson’s Society