1. PARKINSON’S DISEASE: AN OVERVIEW Living with Parkinson’s Disease Deborah Orloff, MPH, RN Chief Executive Officer Michigan Parkinson Foundation

2. Background and Definitions Parkinson’s disease was first described by Dr. James Parkinson in his paper “An Essay on the Shaking Palsy” in 1817. Slowly progressive neurodegenerative disorder with no identifiable cause. The fourth most common neurodegenerative disease of the elderly Affects about 1% of the population over 55 years of age.

3. Pathology Massive loss of the pigmented neurons and gliosis, most prominently in the substantia nigra with presence of Lewy bodies. Loss of approximately 80% of these neurons results in the presence of clinical symptoms.

4. Pathology Courtesy of Kapil D. Sethi, MD Normal PD Courtesy of Kapil D. Sethi, MD

5. Histology of PD Showing Lewy Body

6. Disease Onset Average age of onset 50-60 years Approximately 5% of cases occur before age 40 (young onset) Slowly progressive over 10-20 years Early symptoms may be: constipation, REM sleep disorder, loss of sense of smell, depression non-specific symptoms: easy fatigability, incoordination, change in writing, pain/tension in one shoulder, depression

7. Motor Symptoms of PD Resting Tremor Rigidity (Cogwheel) Bradykinesia (slow movement) or Akinesia (absence of movement) Postural Instability (balance and coordination)

8. Tremor First Sign in 75% of patients Occurs at rest Does not need to be present to make a diagnosis Typically on ones side of body and involves a distal extremity (hand, leg)

9. Rigidity Stiffness caused by an involuntary increase in muscle tone Can affect all muscle groups Often presents as back, neck or shoulder discomfort Often dismissed as arthritis; referrals to orthopedists initially

10. Akinesia/Bradykinesia “Absence of Movement” Describes the difficulty Parkinson’s patients have in initiating and executing a motor plan. Early signs include microphagia (small writing) and loss of dexterity. Facial: Drooling, hypomimia (masked face). Vocal: hypophonia (soft voice).

11. Postural Instability Usually the last motor sign to appear. Often the most disabling and least treatable problem. No single factor alone is responsible. “Freezing” is a form of akinesia which is most problematic during ambulation and often leads to falls.

12. Non-Motor Symptoms Dysautonomias (problems in functioning of the autonomic nervous system) *constipation *impotence *urinary problems *orthostatic hypotension *regulation of heat *sensory disturbances *problems swallowing *pain

13. Non-Motor Symptoms, con’t Speech problems Behavioral problems, including: depression anxiety panic attacks agitation Sleep Disorders

14. Non-Motor Symptoms, cont. Loss of smell Constipation Cognitive (thinking) problems, including dementia Fatigue

15. PARKINSON’S SYMPTOMS VARIABLE—from person to person VARIABLE—from day to day VARIABLE—response to treatment

16. Parkinsonism A clinical syndrome characterized by specific motor deficits including tremor, akinesia, bradykinesia, rigidity and postural changes/instability. An underlying cause is usually identified: chemicals (drugs), structural NPH, or possibly a neurodegenerative disorder (PSP, MSA)

17. Clinical Features That May Suggest a Diagnosis Other Than PD Early onset of postural instability Axial more than appendicular rigidity Poor response to adequate dosages of levodopa Early dementia Supranuclear gaze palsy

18. Treatment and Intervention Non-pharmacologic Exercise Education Nutrition Group Support

19. Treatment and Intervention Pharmacologic Intervention Considerations: *Degree of functional impairment *cognitive impairment *Age (potential side effects) *Cost

20. Treatment and Intervention Newer agents are being introduced at greater ages with success. Research into an effective agent for neuroprotection is ongoing. Neuroprotection remains controversial.

21. How is P.D. Treated? First Line *rest and relaxation *exercise *stress management *nutrition *rehab therapy–ot, pt, speech *mental health counseling *education *support (e.g. support groups)

22. Medication Complex: Know action, dosage, side effects, how respond. Used to treat symptoms, not cure. No two people respond the same. Own responses vary. Need to monitor and change medication regime over time.

23. Medication, con’t Newly diagnosed: may hold off until symptoms interfere May start with low levels and work upwards. May use multiple medications. PD meds may interact with others.

24. Types of Medications Anticholinergics Levodopa (Sinemet CR, Atamet) Amantadine MAO Inhibitors (NO DEMEROL OR ANTIDEPRESSANTS) Dopamine Receptor Agonists Catechol-O-Methyl Transferase (COMT) Selegeline

25. Frequent Side Effects of Meds Orthostatic hypotension Memory loss or confusion Agitation Depression Hallucinations and psychosis Sleep disturbances/daytime sleepiness Nausea Motor Fluctuations

26. Challenges of Medications Timing Monitor and adjust Side effects Complications Drug interactions Cost Frustration Incorporating med regimen into setting

27. Surgery Surgery does not cure or stop the progression. Destruction of cells Deep brain stimulation Pallidotomy Thalamomtomy Gene transfer (beginning stages) Fetal and adrenal grafting (stem cells) EXPERIMENTAL

28. Surgical Treatments Deep Brain Stimulation Surgery * Insertion of an electrode into the brain to deliver electrical stimulation which dampens tremor, rigidity, dyskinesia. *Reversible *Sites vary depending on diagnoses

30. Current Research Cause of PD Restoration Neuro-protection New Pharmacologic Agents Different Modes of Administrating Drugs

31. Management Physical Therapy Occupational Therapy Speech and Language Therapy Mental Health Counseling

32. Treatment Goals Reduce incidence and severity of symptoms Maintain independence Work together as a team

33. IMPLICATIONS FOR CARE Provide information Medication Management Skin Care Elimination (bowel, bladder) Comfort Rest Cognition Mental health Safety Cognition Sleep Communication General Health Family education/support Community Resources

34. Role: Medication Management Correct dose and time Properly administer Track behavior Drug interactions Swallowing difficulties Report problems Document, communicate

35. Provide Expert Care : COMMUNICATION Speech production Facial expression Slowed thinking Slowed responses Information processing, including memory, concentration, confusion Stress increases problems Depression Dementia Handwriting Family talks for PWP

36. Communication, continued Management Assess for hearing problems, also Allow time - patience Quiet environment Positive communicative atmosphere Structure conversations, use familiar words Adult topics and routine Encourage communication Referrals: Speech and Language Pathology Assistive devices

37. Communication, continued Identify problems Document Communicate to other team members Develop plan that works for PWP and family Evaluate

38. Safety Management Assess for risks Identify probable causes Review previous incidents Develop plan Monitor outcomes, revise as necessary Referrals: Physical Therapy, Occupational Therapy, Speech and Language Pathology, Dietitian

39. Safety Management: Ambulation Ambulation Avoid rubber or crepe soled shoes Visual, auditory cues Identify problem areas, e.g. narrow hallways, doors Remove hazards, e.g. area rugs Concentrate on one task at a time Ambulatory aids Avoid pivot turns

40. ADL’S: MANAGEMENT Symptoms vary/abilities vary Perform tasks at times of optimum functioning Give medications so optimal time for tasks is at peak medication time Frustration = PATIENCE Person with PD/Caregiver Referrals: Occupational Therapy Assistive Devices

41. Sleep Problems Different sleep problems Assess when person is having difficulty: falling asleep, awakening during the night, early awakening, napping during the day, etc. Difficulty normally moving in bed Other problems lead to interrupted sleep, including other medical problems, depression, anxiety, pain, RLS May be related to medications

42. Sleep Problems: Management Sleep hygiene Medications Alter PD medications Treat depression Physical aids, e.g. satin sheets

43. Special Issues in LTC Settings Connecting with health professional knowledgeable about management of Parkinson’s disease. Medication management. Complexity of care and course. Hospitalization. Communication/cognition issues. Maintaining in mainstream of life. Family interactions. End of Life issues.

44. Objectives in Long Term Care Assist individual and family to obtain optimal functioning: physically, emotionally, spiritually. Provide highest quality of care to assist individual to achieve a state of wellness consistent with the quality of life desired by the patient. Assist individual and family to achieve a satisfactory end of life experience.

45. Where to get help Michigan Parkinson Foundation 30400 Telegraph, Suite 150 Bingham Farms, MI 48025 800-852-9781; info@parkinsonsmi.org info@parkinsonsmi.org www.parkinsonsmi.org