1. Good Start
Workshop
Parkinson’s Association
Kathryn Krug, MS MFTImf 84082
Director of Clinical Services

2. Today’s Presentation
 General
Information
 Management of
Symptoms
 Current Research
 PA Services

3. Parkinson’s disease
 Effects everybody differently
– Parkinson’s disease effects every individual differently. What a chemical imbalance in
my brain looks like might look different in another.
 Largely monitored by the patient
 Is not a death sentence

4. Diagnosis
Like so many other people in your situation, you
might be feeling one or more of the following
emotions:
•Afraid •Depressed •Powerless
•Alone •Helpless •Relieved
•Angry •In Denial •Sad
•Anxious •Numb •Shocked
•Ashamed •Overwhelmed •Stressed
•Confused •Panicky
It is perfectly normal to have these feelings. It is
also very common to have trouble taking in
and understanding information after you
receive the news.

5. Take your Time!
DO NOT RUSH INTO DECISIONS
In most cases you do not have to act right away
Taking the time you need to make decisions can
help you:
 Feel less anxious and stressed
 Avoid depression
 Feel more in control of your situation
 Play a key role in decisions about your
treatment

6. Living Better with Parkinson’s
You will give yourself the best
possible chance of living better
with Parkinson’s by:
– Adopting a positive, upbeat
attitude
– Equipping yourself with
knowledge
– Partnering with your Doctors
– Taking Action

7. Parkinson’s Definition
Parkinson’s is a
chronic,
progressive
neurologic
disorder
characterized by
the slow
degeneration of
nerve cells in the
part of the brain
that controls
movement.

8. Dopamine’s Involvement
 The primary chemical created by these nerve
cells is dopamine.
 Needed to start a circuit of messages that
coordinate normal movement.
 Limbic: emotional regulation
 Stratic:movement
 Frontal: neurocognitive functions (memory/attention
span/problem-solving)
 When 60 – 80% of nerve cells are lost, motor
symptoms emerge.

9. Dopamine Sends Signals
Dopamine
Dopamine receptor
A signal causes
the release of
dopamine
Dopamine sends the
signal to the next
neuron

10. Dopamine Signal Reduced in
PD
The dying neuron
does not make
enough dopamine
Dopamine does not
send a full signal to the
next neuron
Dopamine reduced

11. SYMPTOMS: Motor
 Resting tremor
 Slow movement
 Rigidity
 Trouble with walking
& balance
 Symptoms usually appear on only one side of
the body, regardless of right- or left-handed
dominance.

12. SYMPTOMS: Non-Motor
Autonomic Nervous System
 Increased sweating
 Bladder problems
 Low blood pressure when standing up
 Sexual dysfunction
 Constipation
 Flaking, dry skin on the face and scalp

13. SYMPTOMS: Non-Motor
Sensory Nervous System
 Numbness
 Aching
 Internal Tremor
 Back Pain
 Reduced Sense of Smell

14. SYMPTOMS: Non-Motor
Mood, Behavior & Cognition
 Shifts in mood
 Agitated behavior
 Depression
– Affects up to 60%
 Dementia
– Affects just over 30%

15. SYMPTOMS: Communication
 A soft, hoarse voice
 Mumbled or fast speech
 Monotone pitch
 Loss of facial expression
 Trouble swallowing

16. Diagnosis
 Not easy to diagnosis
 No test to confirm its presence
 Based on medical history and exam
 Ruling out other conditions
 DAT Scan: a specialized imaging technique
that allows doctors to capture detailed
pictures of the dopamine neurons in your
brain, thusly measuring dopamine levels.

17. CAREGIVER’S NOTE:
Handling the Diagnosis
 A whole range of emotions are normal
 Take your time
 Partner with your doctors
 Take action:
– Learn about PD
– Focus on your health & wellbeing and
your loved ones
 Adopt a positive attitude & help your
partner do the same

18. Progression & Stages
 Determined by symptoms, not by length
of time from diagnosis.
 Symptoms start on one side of the body
and eventual move to the other side.
 Rates of progression vary, so
comparisons are not possible.
Stage I Stage II Stage III Stages IV-V
Unilateral motor
symptoms
Onset of bilateral
motor symptoms
Postural
instability
&
Restriction of
daily activities
Severely
disabled
with possible
cognitive
decline

19. Risk Factors
AGE: Biggest risk factor
– Incidence rises after age 65
– 10% of cases occur before the age of 40
 > 21 sometimes
GENDER: Men are almost 2 times more likely to
get PD than women

20. Numbers
World: 6.3 million
Nation: 1.5 million
– 50,000 are diagnosed each year
Southern California: 75,000 are living with
PD
– 160,000 are affected by the illness

21. Environmental Theory
 Industrialized nations have higher rates of
PD
 Pesticides and heavy metals are thought
to increase the risk
 A chemical (MPTP) can induce PD

22. Genetic Theory
 Discovery of genes that are involved in the
processing of proteins known to be
related to the origin of PD.
 Genetic susceptibility is complex and may
involve many genes
Onset of PD may be combination of genetic
susceptibility and exposure to environmental
toxins.

23. Symptom
Management
Medication
Surgery
Therapies

24. Symptom Management:
Medications
Early Onset:
 Meds not always prescribed for newly
diagnosed
 Starting on medications is highly
individualized
– Functional disability
– High level of motor control

25. Common Medications
Type: Levodopa-Carbidopa
Brands: Sinemet, Parcopa, Stalevo, *DuoPa, *Rytary
Important to Note:
 Levodopa is absorbed in the intestine and
transported to the brain.
 Converted to dopamine
 Gold standard in controlling motor symptoms
 Issues with long-term usage, including “wearing off”
and dyskinesia's: abnormal movement of voluntary
muscles
 Avoid protein 1 hour before and after dose

26. Common Medications
Type: Dopamine Agonist
Brands: Mirapex, Requip, Neupro (patch)
Important to Note:
 Mimics dopamine
 Side Effects Include: hallucinations, sleep
attacks and compulsive behaviors (i.e.
gambling)

27. Common Medications
Type: Mono-Amine Oxidase Inhibitors
Brands: Eldepryl, Zelapar, Azilect
Important to Note:
 Slows the break down of dopamine by blocking
certain enzymes
 Persons with hypertension must be monitored
to ensure BP does not increase

28. Common Medications
Type: Anticholinergics
Brands: Artane, Cogentin
Important to Note:
 Only helps control tremor, typically used as
supplement to Levodopa or dopamine agonist.
 Used with caution with older adults due to side
effects of confusion and memory loss

29. Common Medications
Type: Amantadine
Brands: Symmetrel
Important to Note:
 Used with caution in older adults due to side
effects: confusion, hallucinations
 Works well for patients whose main PD
symptom is predominant tremor
 May also help with slowness and stiffness

30. Side Effects
 Not all patients experience the same side
effects
 Consult doctor, if side effects occur
Nausea Confusion Anxiety
Leg Swelling Drowsiness Dry Mouth
Dizziness Vomiting Insomnia
Low Blood Pressure Hallucinations

31. Medications to Avoid
 Some medications may interfere with PD meds
or worsen symptoms
 Physician consultation should always precede
the use of any of the following:
Antacids Antihistamines
Antiseizure drugs Antiemetics
Antidepressants Antipsychotics
Antihypertensives Monoaminoxidase A
inhibitors (MAOI-As)
General Rule: use caution with “ANTI”

32. General Medication Tips
 ONE Pharmacy Rule
 Published information
 One-week supply
 Start new medications early in the day
 Number of times a day take medication versus
hourly intervals
 Talking pill bottles
 List of daily meds somewhere visible

33. CAREGIVER’S NOTE:
Medications
 Medication timing is critical
– 15 minutes
 Keep a medication diary
– Including meds, meals, mood, and side
effects
– Track your mood, duties, likes and dislikes
 Keep your eyes open for new behaviors,
symptoms, side effects, etc.

34. Symptom Management:
Surgery
Surgery
– Deep Brain Stimulation (DBS) -

35. What is DBS?
 Insertion of electrical
probe(s) into at least 1
brain structure
 Probes are stimulated by
a device implanted
beneath the collarbone

36. Illustration of Deep Brain
Stimulation

37. Why Have DBS?
 Tremor controlled
 Rigidity & dyskinesia
improve
 Activities of daily living
are easier
 Reduction in medication

38. DBS – Success Story

39. Who Qualifies for DBS?
 Positive response to Levodopa
 “Wearing off” spells more frequent
 Dyskinesias more frequent
 Overall good health

40. What to do Next…
 Talk with your doctor
 Do your research
 Weigh the benefits and risks
– Mild headache to infection or stroke

41. SYMPTOM MANAGEMENT:
Therapies
Therapies
– Physical
– Speech
– Nutritional
– Alternative

42. Physical Therapy
 Mobility  Gait/Balance
 Pain Management  Energy Conservation
 Equipment  Posture
 Fall Prevention  Fitness
 Home Safety  Transfers
 Caregiver Training

43. Benefits of Exercise
Exercise may protect
our brains
 Opens new neural pathways
 Exercise + speech and cognition

44. Examples of Exercises
WALKING
 Vary your strides
– Long
– High marching
 Practice swinging your arms
 Walk over lines or flat objects

45. Aquatic Exercise
• Water exercise is an ancient and
time-honored form of healing
• Buoyancy to relieve body
weight
• Thermal energy transfer to
muscles for improved motion

46. Tai – Chi
 Can improve postural instability
 Lowers incidence of falls
 Studies show effects can be maintained up to
3 months after participating in a Tai-Chi
program.

47. Yoga
 Hatha Yoga has meditative components
 Lifestyle - Mind, Body, Spirit
 Increased flexibility
 Increased breathing awareness
 Relaxation

48. Cycling
Cycling for Freezing Gait in Parkinson's Disease
http://www.youtube.com/watch?v=aaY3gz5tJSk

49. Speech Therapy
 Works on all these symptoms primarily by
addressing volume
– Exemplified by Lee Silverman Voice
Treatment (LSVT) research
 Researched and developed by Dr.
Lorraine Ramig
– Positive results seen up to 2 years after
treatment

50. Sample Exercises
1. “Ah”, “ah” with palms pushed together for better
closure.
2. Practice shouting functional phrases:
3. Shout out road signs or land-marks when driving.
4. Read newspaper headlines in loud voice, work up
to short articles.
5. Short phone conversations with kids or grandkids
as a goal.
Caregiver’s Tip: Give PD person time to express, try
not to finish sentences or interrupt, don’t use
impatient body language, try to take the time to
just listen
“Close the door” “I’m fine, thank you”
“I would love a cup of coffee” “Where’s the remote control?”
“Answer the phone” “Did I take my meds yet?”

51. Singing
 Automatically project the voice when we sing
 We also work on:
– Posture
– Respiratory support
– Movement to music
– Articulation and enunciation
– Expression
– Loud, soft, fast, slow, facial expression,
gestures, motions

52. Nutrition:
Food
 Meal Timing is
Important
 Buy Organic
 Mediterranean Diet
Recommended
Constipation: Increase Fiber
Extreme Weight
Loss:
Increase Calories
Inflammation: Antioxidants, dietary
fiber and Vitamin D

53. Nutrition:
Supplements
Tumeric: Contains Curcumin identified
to provide antioxidant, anti-
inflammatory and anti-cancer
properties
Caffeine: Possibly Neuro-protective and
can help to control tremor
Creatine: Supplement may improve
fatigue

54. Alternative Therapies
 Not Scientifically Linked to Symptom Reduction
– Acupuncture
– Massage
 Beneficial effects on
– Muscle Stiffness
– Aches
– Arthritis
– Sleep Problems
– Digestive Disorders
Relaxing and May Reduce Stress

55. Maintain Daily Living
 Maximize independence
– Sometimes performance fluctuates throughout the day
– Some items will require assistance
– Look for changes around the house that make life easier
 Be Patient
– Some tasks may take longer to do
– It may take a moment to work up to doing a task

56. Fall Prevention Tips
 Remove Fall Risks
– Up to 68% with PD will fall each year
– Up to 46% will fall more than once
 Common Items
– Remove throw rugs and secure carpet edges
– Gather cords and tape to wall
– Don’t wax the floors
– Remove clutter from steps & pathways
– Keep frequently used items within reach
 Phone by the bedside
– Use non-slip mat in tub; non-slip rug near tub
– Good lighting around stairs, outdoors, etc.

57. Research Participation
 Becoming a Participant
– Find studies you believe in
– Look for participation level
– Any compensation?
– Will you have to travel?
 Beware
– Trials asking YOU for money
– Anybody offering a CURE
– Invasive treatments you do not agree with
 Fox Trial Finder
www.FoxTrialFinder.MichaelJFox.org
 Research Match
www.ResearchMatch.org

58. Channel 10 Investigates

59. Research
 The Parkinson’s Association actively partners with
Parkinson’s research organizations like the Salk
Institute, Sanford Burnham Medical Research,
the Scripps Research Institute and UCSD.
 One project: Summit4StemCell (S4SC) explores
non-embryonic stem cell research.

60. Parkinson’s
Association
Services

61. What Do We Offer?
Information & Referral Center
 Personalized information packets and materials
 Lending Library
– Books & DVDs
 Newsletter (currently suspended)
 Equipment Exchange Program
– Search our database at www.parkinsonsassociation.org
– Donate today!

62. What Do We Offer?
Educational Events
 Good Start Workshop
 Financial & Legal Wellbeing Series
 Patient Symposium
 Physician & Pharmacists Symposium
 Caregiver Wellness Series

63. What Do We Offer?
Minds & Motion Health Services
Live at your best mentally and physically
 Who
– Persons with Parkinson’s disease
– Caregivers to persons with Parkinson’s disease
– Spouses of persons with Parkinson’s disease
– Family members of persons with Parkinson’s disease
– Friends of persons with Parkinson’s disease
 How
– Individual
– Family
– Couples
– Group

64. What Do We Offer?
Support Groups
 > 20 groups throughout the County
 For patients, caregivers, family and friends
Share, Learn and Support One Another

65. How to Reach the
Parkinson’s Association
Days: Monday to Friday
Times: 9:00am – 3:00pm
Toll-Free: 877-737-7576
Website: www.ParkinsonsAssociation.org
ContactUs@ParkinsonsAssociation.org
Contact:
Kathryn Krug MS MFTI
Director of Clinical Services
Kkrug@ParkinsonsAssociation.org
877-737-7576

66. Helpful Websites
American Parkinson
Disease Association
www.ApdaParkinson.org
Parkinson’s Disease
Foundation
www.PDF.org
Michael J. Fox Foundation www.MichaelJFox.org
Northwest Parkinson’s
Foundation
www.NWPF.org
Southern Caregiver
Resource Center
www.CaregiverCenter.org
Parkinson’s Action Network ParkinsonsAction.org

67. Parkinson’s Jeopardy
 This activity is thought to slow the
progression of Parkinson's disease.
 There are this many stages in
Parkinson’s disease.
 Genetic factors and ______ factors play
a role in developing Parkinson’s
disease.
 This local organization provides FREE
educational workshops and support
services for both persons with PD and
caregivers.