Embed Size (px)
Citation preview
Good Start Workshop
Parkinson’s Association
Kathryn Krug, MS MFTImf 84082
Director of Clinical Services
Today’s Presentation
General
Information
Management of
Symptoms
Current Research
PA Services
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
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.
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
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
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.
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.
Dopamine Sends Signals
DopamineDopamine receptor
A signal causes
the release of
dopamine
Dopamine sends the
signal to the next
neuron
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
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.
SYMPTOMS: Non-MotorAutonomic Nervous System
Increased sweating
Bladder problems
Low blood pressure when standing up
Sexual dysfunction
Constipation
Flaking, dry skin on the face and scalp
SYMPTOMS: Non-MotorSensory Nervous System
Numbness
Aching
Internal Tremor
Back Pain
Reduced Sense of Smell
SYMPTOMS: Non-MotorMood, Behavior & Cognition
Shifts in mood
Agitated behavior
Depression
– Affects up to 60%
Dementia
– Affects just over 30%
SYMPTOMS: Communication
A soft, hoarse voice
Mumbled or fast speech
Monotone pitch
Loss of facial expression
Trouble swallowing
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.
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
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 motorsymptoms
Onset of bilateral motor symptoms
Postural instability
&Restriction of daily activities
Severely disabled
with possible cognitive decline
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
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
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
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.
Symptom Management
Medication
Surgery
Therapies
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
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
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)
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
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
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
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
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”
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
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.
Symptom Management: Surgery
Surgery
– Deep Brain Stimulation (DBS) -
What is DBS?
Insertion of electrical
probe(s) into at least 1
brain structure
Probes are stimulated by
a device implanted
beneath the collarbone
Illustration of Deep Brain Stimulation
Why Have DBS?
Tremor controlled
Rigidity & dyskinesia
improve
Activities of daily living
are easier
Reduction in medication
DBS – Success Story
Who Qualifies for DBS?
Positive response to Levodopa
“Wearing off” spells more frequent
Dyskinesias more frequent
Overall good health
What to do Next…
Talk with your doctor
Do your research
Weigh the benefits and risks
– Mild headache to infection or stroke
SYMPTOM MANAGEMENT: Therapies
Therapies– Physical
– Speech
– Nutritional
– Alternative
Physical Therapy
Mobility Gait/Balance
Pain Management Energy Conservation
Equipment Posture
Fall Prevention Fitness
Home Safety Transfers
Caregiver Training
Benefits of Exercise
Exercise may protect
our brains Opens new neural pathways
Exercise + speech and cognition
Examples of Exercises
WALKING Vary your strides
– Long
– High marching
Practice swinging your arms
Walk over lines or flat objects
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
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.
Yoga
Hatha Yoga has meditative components
Lifestyle - Mind, Body, Spirit
Increased flexibility
Increased breathing awareness
Relaxation
Cycling
Cycling for Freezing Gait in Parkinson's Diseasehttp://www.youtube.com/watch?v=aaY3gz5tJSk
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
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?”
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
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
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
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
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
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.
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
Channel 10 Investigates
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.
Parkinson’s Association
Services
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!
What Do We Offer?
Educational Events
Good Start Workshop
Financial & Legal Wellbeing Series
Patient Symposium
Physician & Pharmacists Symposium
Caregiver Wellness Series
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
What Do We Offer?
Support Groups
> 20 groups throughout the County
For patients, caregivers, family and friends
Share, Learn and Support One Another
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
Contact:
Kathryn Krug MS MFTI
Director of Clinical Services
877-737-7576
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
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.
