Pakistan Parkinsons Society World Parkinsons DayApril 10 2008

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 (Pw. P), 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

Pw. P decreased facial expression gives a sad look or as if ‘elsewhere’ In fact, mind and understanding are absolutely normal.

A Pw. P is a “prisoner in his own body” Communication impairment leads to marginalisation, family and social isolation…

OTHER SYMPTOMS Loss of balance > > 1 Frequent falls > Fatigue Often disproportionate, always very disabling > Pain > > Frequent, disrupting every day life

OTHER SYMPTOMS > Visual problems > Voice problems 2 Difficulty reading, watching television, playing games > > Orthostatic Hypotension > > Communication impairments Dizziness when standing

Other symptoms > Digestive Problems > 3 Painful and occasionally severe constipation > Urinary problems Incontinence or urgent needs (in both > sexes) > Seborrhea Greasy skin and scalp >

Other symptoms Sleep disorders > > No regular sleep pattern > > Psychological troubles Mental problems 4 > > Relationships difficult to maintain 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 Pw. P" Vary during the day Alternating on-off, autonomydisability 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

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 sadsounding !!!!! ? ? ? 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 but Walking up or downstairs is easy Dancing or running can be easier !

"Aberrations" + " He’s not really "It’s almost as if that sick, I she were trying Variability of symptoms think to make sure we he’s trying don’t forget she’s to foolsome us. " people think Pw. P got PD. " Make are = 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 Pw. P must then re-adjust to the new prescriptions Time-tables, dosages

Pw. P must report any and every effect of the treatment. All variations of the general condition of the Pw. P must be noted and taken into consideration.

Some tips for caregivers or families of Pw. P 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 Pw. P to do for himself as much as possible !

Other things to check: Swallowing problems medication taken on time? hydratation ( Pw. P must drink at least 1. 5 litres of water a day).

Important tips

Important tips Do not hurry Stress emphasizes pre-existing proble Do not push Do not pull It increases the risk of falls Be careful not to ‘forget’ the Pw. P in his armchair or bed! Stimulate as you help the patient to get around. Try to plan the day’s activities around the Pw. P’s better moments.

First thing in the morning Help intake or administer the first pills of the day, often before the Pw. P even gets up. Help the Pw. P Don’t pull by the arms to get out of bed Support under the axill Wait for the medication to take effect Before breakfast Before washing Before getting dressed

After breakfast Be available to help You will probably have to help brushing teeth shaving bath or shower dressing with buttons putting on shoes Never leave a Pw. P standing on his own without security

Meal-time tips Help directly or at least verify that the Pw. P 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 Offer gelified Offer ice with swallowing water if necessary. 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) (especially if the Pw. P has trouble Avoid boiling-hot spitting) foods. Use unbreakable dishes and glasses. drinking or Cups with large handles (instead of bowls) will be appreciated! Plastic straws make drinking easier. With bowls instead of plates, ‘running’ after a morsel i easier.

Help with walking (1) Don’t forget: gait troubles may vary during the day. Ask the Pw. P (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 Pw. P 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 Pw. P 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

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 Pw. P 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 Pw. P.

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