Parkinson s Diseasee

Transcription

1 Parkinson s Disease Resource Package

2 Parkinson s Disease Symptoms* Common Symptoms Very Suggestive of PD Tremor Feet and gait Loss of automatic movements Slowness Speech and writing Other Common Symptoms That May Have Other Explanations General Gait, stance, and trunk Hand function Cognition Saliva Resting hand (tremor when the hand is relaxed or at one s side when walking) Resting thumb or finger tremor (observed when the hand is resting in the lap) Chin or lip tremor (also a resting tremor, meaning that it is seen when sitting quietly but not talking or chewing) Tremor of a leg when seated (also a resting tremor) Toes curling or turning up Feet get stuck ( freezing ) Shuffling gait Less animated (facial appearance not expressive, poker-faced, reduced blinking, loss of expressive movements of the hands) Reduced arm swing Slowed movements (takes longer to do things) Softer voice and less distinct speech Smaller handwriting Sense of overall weakness Fatigue Sense of restlessness, nervousness Stiffness, neck or limbs Mild imbalance Stooped posture Difficulty rising from seated position Difficulty turning over in bed Difficulty buttoning buttons, using eating utensils Difficulty brushing teeth Slowed thinking Drooling or sense of increased saliva *Among those with early PD, the symptoms are often on only one side of the body or are asymmetric (more on one side than the other). This asymmetry persists throughout life.

3 Non-Movement Symptoms of PD Category Autonomic nervous system Gastrointestinal Swallowing Bladder Genitalia Blood Pressure Psychiatric Cognitive Sleep Sensory symptoms Other symptoms Symptom Constipation Bloating Heartburn (reflux) Impaired swallowing Drooling Hesitant urination Sudden uncontrollable urges to void (urgency) Incontinence Need to urinate frequently, including at night (nocturia) Frequent urinary tract infections Male impotence Orthostatic hypotension (low blood pressure when standing; faintness, fatigue or faints when standing, walking) Depression Anxiety Inner restlessness (akathisia) Panic attacks Slowed thinking (bradyphrenia) Dementia Hallucinations, delusions Insomnia Daytime sleepiness Acting out dreams (REM sleep behaviour disorder) Restless legs syndrome Sciatica or other limb pain Pain or discomfort in neck, trunk, or abdomen Numbness, tingling Cramps (painful) Sensation of heat or cold Fatigue Shortness of breath Reference: Ahlskog et al. (2005). Parkinson s Disease and Related Disorders. Springer Wien: New York.

4 MULTIDISCIPLINARY ASSESSMENT FORM Clara Cross Rehabilitation Unit, St. Martin s Hospital, Bath Patient s Name: DOB: Registration No: Address/Tel: Date: Medical assessment summary: Diagnosis Idiopathic PD with on/off fluctuations. Diagnosed 15 years ago. Pergolide added 2 years ago. Mini mental 28/30, no hallucinations. Has intermittent Speech Therapy review. Husband frail with poor memory. Main problems: 1. Erratic drug response and? compliance problems 2. Variable mobility tending to freeze when off 3. Falls exclude postural hypotension 4. High-risk fracture but not on osteoporosis medication 5. Back pain 6. Weight loss Occupational therapy assessment summary: 1. Problems with bed mobility 2. Difficultly dressing 3. Difficultly with writing 4. Problems with food preparation 5. Needs education regarding PD and coping strategies for off periods 6. Needs home visit to check armchair, bed and bathing -? rails needed by toilet 7. Safety aspects re: falls 8. May need help at home caregiver stress Physiotherapy assessment summary: 1. Flexed posture with R-sided flexion 2. Neck flexion 3. Poor righting reactions and recent falls 4. Poor gait pattern with freezing 5. Back pain 6. Problems with bed mobility Nursing assessment summary: 1. Difficulty hearing 2. Constipation 3. Urinary frequency and nocturia 4. Weight loss 5. Poor fluid intake 6. Difficulty eating and drinking due to neck flexion 7. Drug regime complicated difficulty remembering drug times Patient/caregiver priorities:

5 Key problem areas: 1. Back pain through posture 2. Poor mobility with poor righting reactions and freezing 3. At risk for further falls and high-risk hip fracture 4. Constipation 5. Assessment required to improve functional abilities at home, including bed mobility 6. Nutrition 7. Medication compliance 8. Caregiver stress Key goals: 1. Promote postural correction and optimize analgesia to ease back pain 2. Promote safe mobility and teach strategies to reduce freezing 3. Reduce risk of fracture 4. Promote healthy bowel function 5. Facilitate independence in functional activities 6. Management plan to maintain/improve nutrition 7. Simplify medication and determine how to improve compliance 8. Reduce caregiver concerns and stress Dates achieved: Agreed plan: Physiotherapy and review of analgesia for back pain Exercises for posture, ease back pain Exclude postural hypotension Exclude other medical causes of weight loss and falls, check bloods, commence calcium and vitamin D Monitor weight and observe feeding problems at meal times Advice re: fluid intake and review laxatives; likely to need dietitian Home visit and consider care package Education re: movement strategies Medication review and establish plan for compliance To attend CCRU: Days: Tuesday afternoons Proposed length of attendance: 5-6 weeks Key worker: Lesley Brooker Review date: June 12, 2007 Referral to other services: Copies to: GP DN Other Example of integrated assessment form to facilitate interdisciplinary teamwork. Speech Therapy and Social Work assessments not included as unfortunately they are not part of the core team at present. Reference: Playfer, J.R. & Hindle, J.V. (Eds.). (2001). Interdisciplinary Rehabilitation: The Practice, pg Parkinson s Disease in the Older Patient. New York: Oxford University Press Inc.

6 A Paradigm for Disease Management in Parkinson s Disease: MacMahon and Thomas Four-Stage Clinical Management Scale [Playford, D. (Ed.). (2003). Neurological Rehabilitation of Parkinson s Disease. London: Martin, Dunitz, Taylor & Francis group]. Diagnosis AIMS Development of disease awareness Reduction in symptoms and distress Acceptance of diagnosis Assessment (Medical and nursing) Accurate diagnosis Evaluate disability Assess support available Estimate patient understanding MANAGEMENT Develop care plan Consider multidisciplinary referral: Specialist nurse Physiotherapy OT Social Worker Dietician Assistance and advice with medication (not always required) Provide patient/carer education Employment Driving Finances OUTCOMES Effective symptom control Reduced patient distress Maintenance AIMS Morbidity Relief Maintenance of function and self-care Promotion of normal activities Re-Assessment Avoid unnecessary medical dependency Reduce symptoms Avoid side effects Alert for complications (e.g., constipation, postural hypotension) MANAGEMENT Review care plan Provide patient/carer education Assistance & advice with medication (single or dual drug therapy) Consider multidisciplinary referral: Speech (and language) therapy Physiotherapy OT Social Worker Dietician Assess carer needs: Benefits Support OUTCOMES Symptoms reduction Treatment compliance Maintenance & promotion of normal activities Complex AIMS Morbidity relief Maintenance of function and self-care despite advancing disease Assistance and adaptation of environment to promote daily living activities Re-Assessment Because of increasing disability and complexity Symptoms control MANAGEMENT Increasingly complex drug management from disease process & side effects Advice on practical problems & prevention of complications* (see box below) Referral/liaison may be required: As in stage 1+ Psychiatrist/CPN Neuro-surgery OUTCOMES Optimum symptom control Minimization of disability Compliance Palliative AIMS Relief of symptoms and distress in patients and carer s Morbidity relief Maintenance of dignity and remaining function despite advancing disease Avoidance of treatmentrelated problems Re-Assessment Symptom Control MANAGEMENT Advice on administration of medication Progressive dopaminergic drug withdrawal Analgesia Sedation Counsellingpsychology/psychiatry Prevention and treatment of complications: Urinary incontinence Pressure sores Motor fluctuations OUTCOMES Absence of distress Maintenance of dignity Symptoms controlled *Complications: Motor fluctuations, dyskinesia, depression, anxiety, self-care, feeding, dysphagia, mobility, falls, confusion, hallucinations

7 United Parkinson's Disease Rating Scale (UPDRS) A. MENTATION, BEHAVIOUR AND MOOD 1. Intellectual Impairment 0 = None. 1 = Mild. Consistent forgetfulness with partial recollection of events and no other difficulties. 2 = Moderate memory loss, with disorientation and moderate difficulty handling complex problems. Mild but definite impairment of function at home with need of occasional prompting. 3 = Severe memory loss with disorientation for time and often to place. Severe impairment in handling problems. 4 = Severe memory loss with orientation preserved to person only. Unable to make judgements or solve problems. Requires much help with personal care. Cannot be left alone at all. 2. Thought Disorder (Due to dementia or drug intoxication) 0 = None. 1 = Vivid dreaming. 2 = "Benign" hallucinations with insight retained. 3 = Occasional to frequent hallucinations or delusions; without insight; could interfere with daily activities. 4 = Persistent hallucinations, delusions, or florrid psychosis. Not able to care for self. 3. Depression 1 = Periods of sadness or guilt greater than normal, never sustained for days or weeks. 2 = Sustained depression (1 week or more). 3 = Sustained depression with vegetative symptoms (insomnia, anorexia, weight loss, loss of interest). 4 = Sustained depression with vegetative symptoms and suicidal thoughts or intent. 4. Motivation/Initiative 1 = Less assertive than usual; more passive. 2 = Loss of initiative or disinterest in elective (non-routine) activities. 3 = Loss of initiative or disinterest in day to day (routine) activities. 4 = Withdrawn, complete loss of motivation.

8 B. ACTIVITIES OF DAILY LIVING (for both "on" and "off") 5. Speech 1 = Mildly affected. No difficulty being understood. 2 = Moderately affected. Sometimes asked to repeat statements. 3 = Severely affected. Frequently asked to repeat statements. 4 = Unintelligible most of the time. 6. Salivation 1 = Slight but definite excess of saliva in mouth; may have nighttime drooling. 2 = Moderately excessive saliva; may have minimal drooling. 3 = Marked excess of saliva with some drooling. 4 = Marked drooling, requires constant tissue or handkerchief. 7. Swallowing 1 = Rare choking. 2 = Occasional choking. 3 = Requires soft food. 4 = Requires NG tube or gastrostomy feeding. 8. Handwriting 1 = Slightly slow or small. 2 = Moderately slow or small; all words are legible. 3 = Severely affected; not all words are legible. 4 = The majority of words are not legible. 9. Cutting food and handling utensils 1 = Somewhat slow and clumsy, but no help needed. 2 = Can cut most foods, although clumsy and slow; some help needed. 3 = Food must be cut by someone, but can still feed slowly. 4 = Needs to be fed. 10. Dressing 1 = Somewhat slow, but no help needed. 2 = Occasional assistance with buttoning, getting arms in sleeves. 3 = Considerable help required, but can do some things alone. 4 = Helpless.

9 11. Hygiene 1 = Somewhat slow, but no help needed. 2 = Needs help to shower or bathe; or very slow in hygienic care. 3 = Requires assistance for washing, brushing teeth, combing hair, going to bathroom. 4 = Foley catheter or other mechanical aids. 12. Turning in bed and adjusting bed clothes 1 = Somewhat slow and clumsy, but no help needed. 2 = Can turn alone or adjust sheets, but with great difficulty. 3 = Can initiate, but not turn or adjust sheets alone. 4 = Helpless. 13. Falling (unrelated to freezing) 0 = None. 1 = Rare falling. 2 = Occasionally falls, less than once per day. 3 = Falls an average of once daily. 4 = Falls more than once daily. 14. Freezing when walking 0 = None. 1 = Rare freezing when walking; may have start hesitation. 2 = Occasional freezing when walking. 3 = Frequent freezing. Occasionally falls from freezing. 4 = Frequent falls from freezing. 15. Walking 1 = Mild difficulty. May not swing arms or may tend to drag leg. 2 = Moderate difficulty, but requires little or no assistance. 3 = Severe disturbance of walking, requiring assistance. 4 = Cannot walk at all, even with assistance. 16. Tremor (Symptomatic complaint of tremor in any part of body.) 0 = Absent. 1 = Slight and infrequently present. 2 = Moderate; bothersome to patient. 3 = Severe; interferes with many activities. 4 = Marked; interferes with most activities.

10 17. Sensory complaints related to parkinsonism 0 = None. 1 = Occasionally has numbness, tingling, or mild aching. 2 = Frequently has numbness, tingling, or aching; not distressing. 3 = Frequent painful sensations. 4 = Excruciating pain. C. MOTOR EXAMINATION 18. Speech 1 = Slight loss of expression, diction and/or volume. 2 = Monotone, slurred but understandable; moderately impaired. 3 = Marked impairment, difficult to understand. 4 = Unintelligible. 19. Facial Expression 1 = Minimal hypomimia, could be normal "Poker Face". 2 = Slight but definitely abnormal diminution of facial expression 3 = Moderate hypomimia; lips parted some of the time. 4 = Masked or fixed facies with severe or complete loss of facial expression; lips parted 1/4 inch or more. 20. Tremor at rest (head, upper and lower extremities) 0 = Absent. 1 = Slight and infrequently present. 2 = Mild in amplitude and persistent. Or moderate in amplitude, but only intermittently present. 3 = Moderate in amplitude and present most of the time. 4 = Marked in amplitude and present most of the time. 21. Action or Postural Tremor of hands 0 = Absent. 1 = Slight; present with action. 2 = Moderate in amplitude, present with action. 3 = Moderate in amplitude with posture holding as well as action. 4 = Marked in amplitude; interferes with feeding.

11 22. Rigidity (Judged on passive movement of major joints with patient relaxed in sitting position. Cogwheeling to be ignored.) 0 = Absent. 1 = Slight or detectable only when activated by mirror or other movements. 2 = Mild to moderate. 3 = Marked, but full range of motion easily achieved. 4 = Severe, range of motion achieved with difficulty. 23. Finger Taps (Patient taps thumb with index finger in rapid succession.) 1 = Mild slowing and/or reduction in amplitude. 2 = Moderately impaired. Definite and early fatiguing. May have occasional arrests in movement. 3 = Severely impaired. Frequent hesitation in initiating movements or arrests in ongoing movement. 4 = Can barely perform the task. 24. Hand Movements (Patient opens and closes hands in rapid succession.) 1 = Mild slowing and/or reduction in amplitude. 2 = Moderately impaired. Definite and early fatiguing. May have occasional arrests in movement. 3 = Severely impaired. Frequent hesitation in initiating movements or arrests in ongoing movement. 4 = Can barely perform the task. 25. Rapid Alternating Movements of Hands (Pronation-supination movements of hands, vertically and horizontally, with as large an amplitude as possible, both hands simultaneously.) 1 = Mild slowing and/or reduction in amplitude. 2 = Moderately impaired. Definite and early fatiguing. May have occasional arrests in movement. 3 = Severely impaired. Frequent hesitation in initiating movements or arrests in ongoing movement. 4 = Can barely perform the task.

12 26. Leg Agility (Patient taps heel on the ground in rapid succession picking up entire leg. Amplitude should be at least 3 inches.) 1 = Mild slowing and/or reduction in amplitude. 2 = Moderately impaired. Definite and early fatiguing. May have occasional arrests in movement. 3 = Severely impaired. Frequent hesitation in initiating movements or arrests in ongoing movement. 4 = Can barely perform the task. 27. Arising from Chair (Patient attempts to rise from a straightbacked chair, with arms folded across chest.) 1 = Slow; or may need more than one attempt. 2 = Pushes self up from arms of seat. 3 = Tends to fall back and may have to try more than one time, but can get up without help. 4 = Unable to arise without help. 28. Posture 0 = Normal erect. 1 = Not quite erect, slightly stooped posture; could be normal for older person. 2 = Moderately stooped posture, definitely abnormal; can be slightly leaning to one side. 3 = Severely stooped posture with kyphosis; can be moderately leaning to one side. 4 = Marked flexion with extreme abnormality of posture. 29. Gait 1 = Walks slowly, may shuffle with short steps, but no festination (hastening steps) or propulsion. 2 = Walks with difficulty, but requires little or no assistance; may have some festination, short steps, or propulsion. 3 = Severe disturbance of gait, requiring assistance. 4 = Cannot walk at all, even with assistance. 30. Postural Stability (Response to sudden, strong posterior displacement produced by pull on shoulders while patient erect with eyes open and feet slightly apart. Patient is prepared.) 1 = Retropulsion, but recovers unaided. 2 = Absence of postural response; would fall if not caught by examiner. 3 = Very unstable, tends to lose balance spontaneously. 4 = Unable to stand without assistance.

13 31. Body Bradykinesia and Hypokinesia (Combining slowness, hesitancy, decreased armswing, small amplitude, and poverty of movement in general.) 0 = None. 1 = Minimal slowness, giving movement a deliberate character; could be normal for some persons. Possibly reduced amplitude. 2 = Mild degree of slowness and poverty of movement which is definitely abnormal. Alternatively, some reduced amplitude. 3 = Moderate slowness, poverty or small amplitude of movement. 4 = Marked slowness, poverty or small amplitude of movement. D. COMPLICATIONS OF THERAPY (In the past week) i. DYSKINESIAS 32. Duration: What proportion of the waking day are dyskinesias present? (Historical information.) 0 = None 1 = 1-25% of day. 2 = 26-50% of day. 3 = 51-75% of day. 4 = % of day. 33. Disability: How disabling are the dyskinesias? (Historical information; may be modified by office examination.) 0 = Not disabling. 1 = Mildly disabling. 2 = Moderately disabling. 3 = Severely disabling. 4 = Completely disabled. 34. Painful Dyskinesias: How painful are the dyskinesias? 0 = No painful dyskinesias. 1 = Slight. 2 = Moderate. 3 = Severe. 4 = Marked. 35. Presence of Early Morning Dystonia (Historical information.) 0 = No 1 = Yes

14 ii. CLINICAL FLUCTUATIONS 36. Are "off" periods predictable? 0 = No 1 = Yes 37. Are "off" periods unpredictable? 0 = No 1 = Yes 38. Do "off" periods come on suddenly, within a few seconds? 0 = No 1 = Yes 39. What proportion of the waking day is the patient "off" on average? 0 = None 1 = 1-25% of day. 2 = 26-50% of day. 3 = 51-75% of day. 4 = % of day. iii. OTHER COMPLICATIONS 40. Does the patient have anorexia, nausea, or vomiting? 0 = No 1 = Yes 41. Any sleep disturbances, such as insomnia or hypersomnolence? 0 = No 1 = Yes 42. Does the patient have symptomatic orthostasis? (Record the patient's blood pressure, height and weight on the scoring form) 0 = No 1 = Yes Reference: Dallas Area Parkinsonism Society (2004). Parkinson s Progress: How it is Measured. Accessed April 11, 2007,

15 PIMS PARKINSON S IMPACT SCALE PIMS NAME: YEAR SYMPTOMS BEGAN: DATE: DATE OF BIRTH: Please indicate by a number (0 4) what impact Parkinsonism has had on your life. 0= no change 1= slight 2= moderate 3= moderately severe 4= severe Use the definitions below to help you measure impact. Self: (Positive) Self: (Negative) Family Relationships: Community Relationships: Work: Travel: Leisure: Safety: Financial Security; Sexuality: Refers to how positive you feel about yourself (self-worth, happiness, optimism) Refers how negative you feel about yourself (level of stress, anxiety or depression) Refers to your spouse, partner, children and relatives that you consider part of your immediate family Refers to your neighbours, friends, people you work with and those who provide you with services (store clerk, doctor, pastor, etc.) Refers to your job and/or the running of your home and your ability to support yourself and your family Refers to your ability to reach your destinations i.e.: work and/or social Refers to your ability to continue enjoyable activities (hobbies, sports, volunteering Refers to your ability to do what you want without injuring yourself or others (driving, being outdoors, in the kitchen, in the bathroom, etc.) Refers to your ability to support yourself and your family and pay your medical costs Refers to your ability to maintain a satisfactory sexual relationship If your symptoms are stable complete column 1 If your symptoms fluctuate complete columns 2a and 2b (best and worse) Column 1 Column 2a (Best) Column 2b (Worst) 1. Self-positive 2. Self-negative 3. Family Relationships 4. Community Relationships 5. Work 6. Travel 7. Leisure 8. Safety 9. Financial Security 10. Sexuality Parkinson s Impact Scale (PMIS) Parkinsonism and Related Orders, 1996 Vol.2, No.2, pp This scale has been developed with the support of The Parkinson Foundation of Canada and the Canadian office of DuPont Pharma Inc E

16 On-Line Parkinson s Disease Information Here is a list of online resources that may be helpful to your clients and their caregivers. Parkinson Society of Canada: The Movement Disorder Virtual University: A website dedicated solely to professional education in movement disorders and related conditions. American Parkinson Disease Association: Awakenings: Michael J. Fox Foundation for Parkinson s Research: National Institute of Neurological Disorders: The National Parkinson Foundation: The Parkinson s Disease Foundation: Worldwide Education and Awareness for Movement Disorders: Parkinson s Disease & The Art of Moving: The John Argue Method: Parkinson Exercises of Marj Hansen: Parkinsonploy: