Transcript PD201-self-care-strategies-1x - National Parkinson Foundation

PD 201 – Self-care strategies
Dr. Michelle Burack, MD, PhD
Assistant Professor of Neurology
University of Rochester
Clinical director, Deep Brain Stimulation program
DISCLOSURES
• Income from healthcare-related sources
• Salary support: University of Rochester
• Direct Patient care (75%)
• Research (10%)
• Grant from Great Lakes Neurotechnologies (movement monitoring
system)
• Administrative (10%)
• Teaching (5%)
• Consulting: None
• Patents: None
• Equity holdings: Novartis
Openpaymentsdata.cms.gov
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Self-management => Teamwork
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Overview of Empowering YOU
• Getting the most out of your doctor visits
• Between doctor visits:
• Physical exercise
• Mental exercise
• Nutrition
• Self-advocacy tips
• Care Partner Advice & Resources
• Planning ahead
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Getting the most out of your doctor visits
• Make a list of questions and concerns ahead of time
• Prioritize them to make sure the most important ones are
discussed first
• Make sure non-motor symptoms are discussed too!
(If you don’t know what I mean by this, see PD101)
• “Medication reconciliation”
• The doctor needs to know is what is actually in your
pillbox (what you swallow every day)
• The list in the computer may be wrong
• Bring an up-to-date list of all medications, including doses
and schedule
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Worksheets to help you prepare
FREE RESOURCE: www.davisphinneyfoundation.org
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Teamwork among your providers
• Primary care doctor
• The point-person for integrating care for all of your
health issues
• Neurologist
• Manages medications used to treat PD motor symptoms
• Advises re: treatment for other conditions that may
impact PD
• Other specialists: orthopedist, urologist,
psychiatrist, gastroenterologist, sleep specialist,
physical therapist, etc.
It is extremely helpful if all of your providers are in the same health system!
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Neurologist sub-types
• General neurologist
• Specialty training in nervous system conditions
• Community or university-based
• Typically work full time seeing patients with a variety of
neurologic conditions
• Many of them see just as many (or more) individuals with
PD as the movement disorders specialists do
• Movement disorders specialist
• Sub-specialty training in nervous system conditions that
affect movement (e.g. PD)
• University-based
• Typically see patients part-time (research and teaching)
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General neurologist vs. Movement specialist
• General neurologist
• Movement disorders
neurologist
• Easier access for
appointments
• More likely to stay with the
same doctor
• Ideal for long-term routine
followup care
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• May be less available for
appointments (especially for
urgent issues)
• Turn-over is higher
• Career advancement; new
faculty members
• Consider consultation if:
• Diagnosis is uncertain
• Symptoms are atypical
• Symptoms are not responding
optimally to treatment
Questions about doctor
visits?
• PD 301 will cover different medications used for
various symptoms
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STRETCH BREAK!
• Gradual, gentle stretch
• Just to the point where you feel slight pull
• Take 3 deep breaths, and then see if you can lengthen
the stretch a little bit
• Hold the stretch for at least 20 seconds
• If it hurts, don’t do it
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Scheduled physical activity (a.k.a. exercise)
• Everyone, no matter what stage of PD, should
incorporate scheduled physical activity into the
daily routine
• The sooner you start, the more it will pay off
• Tailor to what you can tolerate (and what is safe)
• If you’re just starting, start gently and build gradually
• Active chores are good, but they do not accomplish the
same thing as exercise
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The advantages of activity as
treatment for PD
• You are in control !
• Which type
• What dose
• What schedule
• No adverse side effects !
• No sedation or fuzzy thinking
• No nausea
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(as long as you don’t overdo it)
Benefits for the body
“Aerobic”: sustained, vigorous (cycling, jogging /
brisk walking, swimming, etc.)
• Cardiopulmonary health
• Weight loss
• Also benefits blood pressure,
cholesterol, diabetes
Goal: gradually build up to an intensity that gets heart rate elevated
(Intense enough = it should be difficult to speak in full sentences)
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Benefits for the body
• Resistance training
• Build / maintain muscle mass
• Counteracts effects of rigidity
and posture changes from PD
(especially “core muscles” &
leg muscles)
• **Fall prevention**
• Prevent / reduce arthritic pain
• Good for bone density, too
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Benefits particularly for PD
• Stretching
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• Motor
programming
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Ingredients for success:
• Do something you enjoy
• If you don’t like it, you won’t do it
• Add music
• Build up gradually; push just a little harder
• Add minutes
• Add repetitions
• Add more sessions per week
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Ingredients for success:
• Make it social
• Find an exercise buddy
• Peer pressure is a good thing!
• Get a personal trainer; join a class
• Do something new
• Good for building new connections in the brain
• Reward yourself for success!
• Activity tracker; exercise journal
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Physical exercise helps the brain
• Benefits of exercise are not just for the body
• Better sleep
• Better mood
• Lower risk of dementia
• Many studies have shown lower cognitive decline in
individuals with greater physical activity
• One study of older adults showed that walking 30-45
minutes three days per week for one year increased
the size of parts of the brain essential for memory
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Starting tomorrow:
• Stretch in bed every morning (10 minutes)
• Add 5 minutes of physical activity to your
day
• 5 more minutes of what you already do
• If you are not already exercising, try:
•
•
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Leg lifts
Air-cycling
Jumping jacks
Walking
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Managing the energy budget
• Think of exercise as retirement savings
• Before PD, energy budgets were seldom in
“overdraft”
• With PD your energy budget may feel more limited
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Exercise as retirement savings
• The energy you invest in exercise, pays
interest over the long run
• It takes discipline to invest in retirement when
finances are tight. But it is essential.
• Just like retirement savings, it won’t work if
you put it off until later
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Mental Exercise
• Brain cells are most interested in new, unexpected
information
• Environments that are enriched with the most
novel stimuli:
• Other people
• Nature
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Maintaining social engagement
• PD can be very socially isolating
• Motor symptomsself-consciousness, stigma
• Mobility difficultiesmore difficult to get out
• Curtailing driving less flexibility
• Communication difficultiesfrustration
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Maintaining social engagement
• It is essential to fight back, and stay engaged
• Educate those who don’t understand PD, so they
can become accustomed to what it looks like
• Ask for help. People want to help. Trust me.
They really do.
• Explore options for transportation assistance
• Eldersource resource guide
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Communication tips
• It is important to advocate to have the time
you need to answer for yourself
• May need more time to get thoughts into words
• Ask friends and loved ones for gentle reminders
to speak up
• Bigger breath  louder voice
• Let them know it is okay to ask you repeat
something if they did not hear it clearly
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Communication tips
• Speech therapy can help boost your
voice
• Connecting Voices wellness program is
another resource to exercise your voice
• Your voice is important. Don’t stop
using it!
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Don’t forget to laugh!
•
https://www.facebook.com/FascinatingWorld0/videos/457954454402833/
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?
Questions about exercising the
body and mind?
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“Parkinson’s is not for sissies.”
--Liz Schnucker, NPFGR Board Member
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Nutrition and diet
• General principles of healthy eating apply:
• “Food that remembers where it came from”
• Healthy plate = 50% fruits & vegetables
• Antioxidants: brightly colored foods (carrots,
beets, dark green vegetables); green tea
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PD-specific elements of nutrition
• Loss of sense of smellfood may be less
flavorful
• Augment primary taste senses of salt, sweet,
sour
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Food & Medication absorption
• Food (particularly high-fat foods) can slow
exit from stomach into small intestine
• High protein content may interfere with
levodopa absorption in the intestine (uses
the same amino acid transporter)
• Protein is a necessary part of the diet.
• Divide into smaller amounts at each meal rather than
all in one meal
• More protein with breakfast rather than dinner may
work better if movement is worse later in the day
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Medication timing
• Dogma: avoid taking PD medications with meals
• Reality: “It depends”
• Is it practical?
• If linking medication dose to mealtime helps someone remember to
take it, dose with meals is better than missing a dose altogether.
• If medication schedule is every 2 or 3 hours, it is virtually impossible
to avoid a meal
• Does it make a difference in how well the medications work?
• If you don’t notice a difference in symptoms, it probably doesn’t
matter
• Some people notice side effects are worse on an empty stomach
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Benefits of water
• Dehydration can worsen all PD symptoms (even
the motor symptoms)
• Water helps with constipation
• Drinking enough water with each medication dose
helps it get absorbed faster
• Avoiding dehydration prevents dizziness caused
by low blood pressure
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How much water?
8 oz
Half a
gallon!
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Vitamin supplementation
• Consider Vitamin D supplement
• High prevalence of vitamin D deficiency in northern
latitudes
• Important for bone health (prevent fractures caused
by falling)
• Consider testing for B12 levels
• B12 deficiency causes loss of feeling in the feet, and
can cause memory loss
• Levodopa metabolism requires B12
• Evidence for increased risk of B12 deficiency in PD
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Vitamin supplementation
• Iron can interfere with levodopa absorption
• B6 can reduce levodopa effectiveness
• Research questions:
• effects of probiotics , “microbiome”
• effects of amino acid composition of food on levodopa
effectiveness
• other diet effects on PD progression
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Other nutrition resources
• Parkinson disease foundation webinar
• www.pdf.org
• Library of Online Seminars: Nutrition and Parkinson’s disease
• Diet and Nutrition section in the Davis Phinney
Every Victory Counts manual
• April symposium guest speaker Dr. .Heather
Zwickey
Questions?
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Teamwork
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Advice for Care Partners
• Who is your support network?
• Family members, friends, neighbors, religious
community, coworkers
• NPF chapter resources (support groups; PD
café)
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Advice for Care Partners
• Who is your support network?
• Consider meeting with a counselor if there are
things you find difficult to talk about with your
friends and family
• Grieving changes
• Navigating communication challenges
• Setting boundaries; energy budgeting; managing
guilt
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Advice for Care Partners
• Take time-out to recharge
• The pilot needs an oxygen mask too!
• You may need to let go of the rudder for a short
while
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Advice for Care Partners
• Be mindful of your energy budget
• As a rule, people tend to wait too long to ask for
help
• Don’t wait until you are worn out to call for
reinforcements
• Ask if your provider has a social worker you can
talk to if you are feeling overwhelmed
• Care management resources (e.g. Eldersource)
• Respite care grants from NPF chapter
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Advice for people with PD
• The fine line between “supportive” and
“intrusive” is not always obvious.
• Forgive your partner if he/she is not on the side of
that line that you want him/her to be
• Remember to be thankful that he/she is trying!
• Explain the boundaries that work best for you
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Advice for people with PD
• Accepting change can be hard
• Our culture generally cultivates a “we are
what we do” sense of self
• PD will challenge you to find out who you
are beyond what you do
• Consider talking about some of “identity”
challenges with someone in your faith
community or a trusted friend
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Advice for people with PD
• Mindful choices
• The chemistry of the brain changes based on your
choices
• Gratitude mindset: reflect at the end of each day to
find one small moment of joy, and cherish it
• Active breathing: Pause to take slow deep breaths
if you are feeling anxious or fatigued
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Breathing
• PD can cause the ribcage and diaphragm to
become stiff
• Smaller breaths
• Retained carbon dioxide (sleepiness, foggy
thinking)
• Voice too quiet
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Breathing exercises
• Expand the chest
• Count your breath on the way in
• Fill your upper chest first, then keep inhaling
down toward the belly button
• Hold for 1 count, then slowly exhale (try to
match the count inout)
• With each breath, try to expand your chest just
a little bit bigger (increase the count a little
longer with each breath)
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Breathing exercises
• Use the diaphragm
• Start by breathing normally
• Place one hand on your chest, and one on your
belly
• Breathe in through the nose, out through the
mouth
• If you notice your chest hand moving more than
the belly hand, try to shift your breath lower so
that the belly hand moves more than the chest
hand
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Planning ahead
• No one knows what forks and bumps are on the road
ahead
• “Hope for the best, plan for the worst, reality is usually
going to be somewhere in the middle.”
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Important documents
• Power of attorney
• Specifies who should make financial
and legal decisions for you if you are
unable to do so yourself
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Important documents
• Health care proxy
• Specifies who should make health care decisions
for you if you are unable to do so yourself
• Note that spouse or other family member is the
default “surrogate decision maker” in the absence
of the health care proxy document
• The health care proxy makes clear who you trust to
make those decisions, in the event that there is a
disagreement
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Important documents
• Living will
• A document that makes your preferences about
life-sustaining treatments clear for your
surrogate decision makers
• There are many many nuances to the decisions faced
in different medical circumstances
• This document is a crude outline (a surrogate
decision-maker is often needed to help provide
guidance in accordance with your preferences)
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“Crucial conversations”
• What changes might be needed as
mobility becomes more difficult over
time?
• Who will you call upon if things get to the
point that you need help?
• Family
• Paid help (home health aide, companion)
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“Crucial conversations”
• What changes might be needed as
mobility becomes more difficult over
time?
• Living environment
• Downsize
• Assisted living community
• Paid help (housekeeping, lawn care, home
repair)
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“Crucial conversations”
• What changes might be needed as
mobility becomes more difficult over
time?
• What are the triggers for making these
changes?
• What resources do you have to implement
these decisions?
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