Pakistan Parkinson’s Society World Parkinsons Day…April 10, 2008

1. 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

2. The way we are...

3. Practical management of PARKINSON’S DISEASE

4. FOR EVERYBODY: People with Parkinson (PwP), their families, caregivers, health-care workers.

5. 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 intermittentsymptoms.

6. Treatment must constantly be adjusted, following the progression of the disease in order to regain and maintain THE PROPER BALANCE

7. PD is NOT “ONLY” a MEDICAL PROBLEM but also a FAMILY, SOCIAL AND PROFESSIONAL PROBLEM

8. This is why P.D requires the intervention of a MULTIDISCIPLINARY THERAPEUTIC TEAM

9. BETTER UNDERSTANDING makes for BETTER HELPING

10. SYMPTOMS and IMPORTANT FACTS to consider

11. 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

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

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

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

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

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

17. Other symptoms 4 Psychological troubles >> Sleep disorders No regular sleep pattern >> Relationships difficult to maintain >> Mental problems Rare ( 15% of cases) and in the late stages of P.D

18. 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

19. All these symptoms Lead to more or less disability in everyday activities Require more and more help as the illness worsens and very cooperativecare-givers as to limit stress which emphasizes the symptoms for the PwP

20. A very special patient Treatment must be oftenreevaluated Disabilities are variable and intermittent On - offmotor fluctuations and freezing Involuntary movements : dyskinesia anddystonia

21. 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

22. P.D means having a safe mind prisoner of own body …

23. Stiffness and akinesia « Like walking upstream wearing a chain-mail outfit»

24. 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 make-up, or getting to the bathroom in time …. "

25. Dyskinesia and dystonia « Constant involuntary movements are exhausting, sometimes painful and make it difficult to keep in touch with people  » 

26. Symptoms "come and go" off = stiffness «like a statue» on = normal mobility off = back to being a statue

27. Fluctuations, On-Off « Being perfectly normal and suddenly go for major motor problems as if a switchhas been turned off  »

28. Speech impairment Weak voice with no intonation Monotonous and sad-sounding !!!!!!!!!! ??? Problems to communicate

29. Weariness and fatigue " Fatigue is unbelievable! I feel often exhausted for no reason "

30. 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 »

31. "Obvious Aberrations" Movements responding to a simplebrain commandare possible. a complex or automaticbrain commandare impossible. For someone ignorant of PD, it looks like an aberration that Walking is hard with small steps and feet stuck to the earth Walking up or downstairs is easy but Dancing or running can be easier ! Going through a doorway is difficult

32. "It’s almost as if she were trying to make sure we don’t forget she’s got PD." " He’s not really that sick, I think he’s trying to fool us." "Aberrations" + Variability of symptoms = Make some people think PwP are faking some problems or at least exagerating them

33. 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

34. «  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!

35. 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. »

36. PD’s slowness « Please be patient. I need more time!»

37. 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…

38. 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…… »

39. Depression and anxiety Related to the condition or as a reaction to PD

40. Disruption in sleep patterns drowsiness during the day Sleepless at night

41. PD and medication

42. Medical treatment « All these pills!! Are you sure you need them all??»

43. Medical treatment Different types of medication Caracterized by precise action • duration of the effect particular side-effects

44. 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

45. 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

46. 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.

47. Some tips for caregivers or families of PwP at an advanced stage

48. Schedules and medication

49. Personalized schedules For each person: According to age According to PD’s severity Depending on the type of medication prescribed.

50. 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