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© 2013 Griswold International, LLC
Uncovering the
of Parkinson’s
Disease (PD)
© 2013 Griswold International, LLC
Celebrating
National
Parkinson’s
Disease
Month
"Every person with
Parkinson's should know
that they can help fight the impact
of the disease. It is never too late to
see improvements in one's daily life.
This campaign brings to light the
many ways that anyone can take
action, and arms them with the
resources they need to live their
best life with Parkinson's.”
Joyce Oberdorf , NPF's President and CEO
© 2013 Griswold International, LLC
Thank you for your courage, energy, and dedication!
Professional CaregiversHealthcare Providers
Family Caregivers Living with PD
© 2013 Griswold International, LLC
Our Goal for Today
Put the focus on the “hidden” symptoms of
Parkinson’s Disease and provide tools to
understand and overcome them.
© 2013 Griswold International, LLC
Chris Kelly, MEd
Director of Learning & Development
Griswold Home Care
Presented by:
© 2013 Griswold International, LLC
About Parkinson’s
Disease
Analogy: Think of the breaking system on a car.
Dopamine helps you adjust the pressure on the brake and gas pedals.
It helps you learn that when you see a red light at an intersection, you
brake and when the green light comes on, you take your foot off the
brake and depress the gas pedal to go. People with Parkinson’s
Disease have lost the neurons that release dopamine, so they have
their foot perpetually stuck on the brake. It becomes very difficult to
control movement.
Dopamine
Transmitting
neuron
Receptor cell
Healthy Patient PD Patient
(D. Surmeier, 2008)
© 2013 Griswold International, LLC
Lit Review
Social Media
Advocacy
Solutions Webinar & Toolkit
© 2013 Griswold International, LLC
Brainwriting is…
• a fun, engaging way to brainstorm
• sharing as many ideas as possible within a short timeframe
Brainwriting Process
• Listen for our questions
• When prompted, enter your solutions using the webinar chat function
• Don’t overthink or agonize…There are no right or wrong answers
Brainwriting Outcomes
• Peer-to-peer learning and sharing
• A publication that benefits others who are living with MS
Important
• Avoid sharing any information that you would not want others to see
BRAIN WRITING
Solutions
© 2013 Griswold International, LLC
Lit Review “Scientists showed
that the impact of
depression on health status
is almost twice that of
the motor impairments
universally associated
with Parkinson’s.”
Parkinson’s Outcomes Project – 2012
http://www.parkinson.org/outcomes
© 2013 Griswold International, LLC
Lit Review
FACIAL EXPRESSIONBALANCE
MOBILITY INDEPENDENCE ROLES
When reading through the symptoms
of Parkinson’s Disease, you frequently
see the words, “loss of”
• Avoidance
• Confusion
• Shock
• Fear
• Frustration
• Irritation
• Anxiety
• Overwhelmed
• Helplessness
• Hostility
• Flight
• Struggling to Find Meaning
• Reaching Out to Others
• Telling One’s Story
• Exploring
Options
• New Plan
In Place
• Moving On
• Adjusting
Kübler-Ross
Stages of Grief
ANGER
BARGAINING
ACCEPTANCE
DENIAL
DEPRESSION
Information and
Communication
Guidance and
Direction
Emotional
Support
by Dr. Elisabeth Kubler-Ross
http://www.ekrfoundation.org/five-stages-of-grief/
© 2013 Griswold International, LLC
Lit Review
http://bit.ly/XpZ6P9
© 2013 Griswold International, LLC
Lit Review
Values, Emotions,
Beliefs, and Attitudes
Anxiety, depression, uncertainty, fear,
anger, isolation
Knowledge
Understanding of PD and
how to self-manage
Surrounding
Environment
Financial issues,
competing needs, access
to care/services
Support
Network
Awareness and
access to
family, friends,
peers, advocacy
Confidence
Confidence in diagnosis, care
team, treatment, ability to
manage PD/treatment
A model for assessing psychosocial
factors
© 2013 Griswold International, LLC
Lit Review
Highlighting a disconnect between
prescribers and clients
ClientPrescriber
Primary focus on managing
motor symptoms:
• Primary motor symptoms:
Resting tremor, slow
movement, rigidity, unstable
posture leading to loss of
balance and falls.
• Secondary motor
symptoms: Freezing gait,
difficulty with handwriting,
mask-like expression,
unwanted acceleration of
movement.
Primary focus on managing
psychosocial (“hidden”)
symptoms:
• Depression, anxiety, and
isolation
• Insomnia
• Frequent urination
• Fatigue and loss of energy
• Cognitive/memory changes
• Excessive saliva
• Vision and dental problems
All of these symptoms impact
work, financial issues, roles,
family, hobbies, and relationships
Disconnect
Medical
vs.
Psychosocial
© 2013 Griswold International, LLC
Lit Review Bring on the Healthcare Extenders!
Family/Friends
Griswold
Home Care
Pharmacist
Nurse
(RN, LPN, APN)
Government
Agencies
Discharge Planner
Social Worker
Yoga/Tai Chi/Pilates
Instructor
PT/OT/Speech
Counselor
Massage Therapist
Health Coach
1.800.4PD.INFO
(473-4636)
© 2013 Griswold International, LLC
National Parkinson’s Foundation Open Forum
http://forum.parkinson.org/index.php?/topic/13992-the-hidden-symptoms-of-parkinsons/
If you happen to come across someone with
Parkinson’s (we are out there!) you are likely to
notice the tremor and the shuffling, unsteady
walk. The symptoms you won’t see are the
feelings of restricted movement, the frustrating
disobedience the body has for sufferers’
conscious will and the subsequent feeling that
you are a puppet whose strings are controlled by
Parkinson’s. You will miss the sheer mind
numbing exhaustion, the feelings of helplessness
and depression, the urge to urinate every 5
minutes, the food that gets stuck in your throat
because swallowing is affected, the irresistible
sleepiness and the battle not to close yourself
down in the face of all this.
Social Media
© 2013 Griswold International, LLC
Social Media
“Am I
disabled
now?” “Afraid I
will choke”
 “Adapting
to life with
Parkinson’s”
 “Parkinson’s
and dating!”
Client discussion
boards reveal
hidden symptoms...
© 2013 Griswold International, LLC
Social Media
“Husband with
memory loss”
 “Loneliness”
 “Driving
problems -
what to do?”
 “Dealing with
depression
and anger”
Family caregiver
discussion boards
reveal hidden symptoms...
© 2013 Griswold International, LLC
My Pet Peeves -
The Power of Humor
Why don’t
they make Velcro
Shirts?
BUTTONS:
Hard to use, however
the alternative is
not pretty.
TOOTHBRUSH:
They go flying off my feet.
Is going barefoot
the solution?
BOOTS, SHOES,
SLIP-ONS, FLIP FLOPS:
Always leads to more
soup around the
plate than in my
stomach.
SOUP:
STRESS:
I shake uncontrollably
when under stress, a great
tool when I want to win
an argument with my
spouse.
http://www.parkinson.org/Personal-Stories/Ending-the-Silence-on-Parkinson-s
© 2013 Griswold International, LLC
WRITING:
My biggest frustration - I avoid it
like the plague. I love the look I get
from immigration officers when they
read my customs form. I just say,
“sorry rough flight, there was a
lot of turbulence.”
CONTACT LENSES:
SLEEP:
Who needs it? I can never find
the perfect position. I’m thinking
of trying hammocks - will let you
know how it works out…
TIREDNESS:
Especially late afternoon,
whoever invented the siesta
was on to something -
probably had Parkinson’s
and didn’t know it.
BELT:
Am I going to have
to start wearing
spandex pants?
I guess I can just
wear glasses; maybe
I will look more
intellectual ;)
http://www.parkinson.org/Personal-Stories/Ending-the-Silence-on-Parkinson-s
© 2013 Griswold International, LLC
Advocacy
WHATEVER IT TAKES
to Beat Parkinson’s
© 2013 Griswold International, LLC
Solutions Webinar
& Toolkit
Breaking through the barriers
to find real solutions
© 2013 Griswold International, LLC
Solutions Webinar
& Toolkit
Tools to address
psychosocial
symptoms of PD
National Parkinson’s Foundation
Depression:
http://bit.ly/109iWfB
What are the Treatment
Options for Anxiety?:
http://bit.ly/Z22JWx
Depression Videos
and Webcasts:
http://bit.ly/17dh2OL
© 2013 Griswold International, LLC
Solutions Webinar
& Toolkit
Tools to address
psychosocial
symptoms of PD
The Michael J. Fox Foundation for Parkinson’s Research
Emotions and
Parkinson’s Disease:
http://bit.ly/14EMmq2
How are Depression and
Parkinson’s Disease Linked?
http://bit.ly/16oh9nq
I have Parkinson’s Disease,
it doesn’t have me #1:
http://bit.ly/16wDZLq
I have Parkinson’s Disease,
it doesn’t have me #2:
http://bit.ly/Xq3pKb
© 2013 Griswold International, LLC
Solutions Webinar
& Toolkit
Tools to address
psychosocial
symptoms of PD
American Academy of Neurology: Practice parameter: treatment
of non-motor symptoms of Parkinson’s disease. Report of the
Quality Standards Subcommittee of the American Academy of
Neurology. (2010).
http://1.usa.gov/13RI3Z9
Additional Resources
National Institute of
Neurological Disorders
and Stroke –
Benefits of Tai Chi:
http://1.usa.gov/Z22WJr
Elisabeth Kubler-
Ross Foundation:
http://bit.ly/10vYjZO
© 2013 Griswold International, LLC
Solutions Webinar
& Toolkit
Tools to address
psychosocial
symptoms of PD
WHATEVER IT TAKES
to Beat Parkinson’s
http://bit.ly/17gDohg
© 2013 Griswold International, LLC
Key Takeaways
Points to remember
Quality of life for PD clients is directly related to
psychosocial issues that are rarely addressed or
discussed with prescribers
Healthcare extenders, tools, and resources can
uncover “hidden” symptoms and provides solutions to
overcome them
© 2013 Griswold International, LLC
Open Q&A
1. Click to expand
if necessary
2. Type questions here
© 2013 Griswold International, LLC
National 24x7 Care Line:
800-GRISWOLD
GriswoldHomeCare.com
Brought to you by:
Extraordinary Home Care
at Affordable Rates Since 1982
Griswold Home Care offers access to affordable
non-medical care options to assist your loved one.
CareAssure Screening System™
The Griswold Golden Rule: We only approve
caregivers we would trust in our own homes.
QuickCare Placement™
We give each family access to the most
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Uncovering the Hidden Symptoms of Parkinson’s Disease

  • 1. © 2013 Griswold International, LLC Uncovering the of Parkinson’s Disease (PD)
  • 2. © 2013 Griswold International, LLC Celebrating National Parkinson’s Disease Month "Every person with Parkinson's should know that they can help fight the impact of the disease. It is never too late to see improvements in one's daily life. This campaign brings to light the many ways that anyone can take action, and arms them with the resources they need to live their best life with Parkinson's.” Joyce Oberdorf , NPF's President and CEO
  • 3. © 2013 Griswold International, LLC Thank you for your courage, energy, and dedication! Professional CaregiversHealthcare Providers Family Caregivers Living with PD
  • 4. © 2013 Griswold International, LLC Our Goal for Today Put the focus on the “hidden” symptoms of Parkinson’s Disease and provide tools to understand and overcome them.
  • 5. © 2013 Griswold International, LLC Chris Kelly, MEd Director of Learning & Development Griswold Home Care Presented by:
  • 6. © 2013 Griswold International, LLC About Parkinson’s Disease Analogy: Think of the breaking system on a car. Dopamine helps you adjust the pressure on the brake and gas pedals. It helps you learn that when you see a red light at an intersection, you brake and when the green light comes on, you take your foot off the brake and depress the gas pedal to go. People with Parkinson’s Disease have lost the neurons that release dopamine, so they have their foot perpetually stuck on the brake. It becomes very difficult to control movement. Dopamine Transmitting neuron Receptor cell Healthy Patient PD Patient (D. Surmeier, 2008)
  • 7. © 2013 Griswold International, LLC Lit Review Social Media Advocacy Solutions Webinar & Toolkit
  • 8. © 2013 Griswold International, LLC Brainwriting is… • a fun, engaging way to brainstorm • sharing as many ideas as possible within a short timeframe Brainwriting Process • Listen for our questions • When prompted, enter your solutions using the webinar chat function • Don’t overthink or agonize…There are no right or wrong answers Brainwriting Outcomes • Peer-to-peer learning and sharing • A publication that benefits others who are living with MS Important • Avoid sharing any information that you would not want others to see BRAIN WRITING Solutions
  • 9. © 2013 Griswold International, LLC Lit Review “Scientists showed that the impact of depression on health status is almost twice that of the motor impairments universally associated with Parkinson’s.” Parkinson’s Outcomes Project – 2012 http://www.parkinson.org/outcomes
  • 10. © 2013 Griswold International, LLC Lit Review FACIAL EXPRESSIONBALANCE MOBILITY INDEPENDENCE ROLES When reading through the symptoms of Parkinson’s Disease, you frequently see the words, “loss of”
  • 11. • Avoidance • Confusion • Shock • Fear • Frustration • Irritation • Anxiety • Overwhelmed • Helplessness • Hostility • Flight • Struggling to Find Meaning • Reaching Out to Others • Telling One’s Story • Exploring Options • New Plan In Place • Moving On • Adjusting Kübler-Ross Stages of Grief ANGER BARGAINING ACCEPTANCE DENIAL DEPRESSION Information and Communication Guidance and Direction Emotional Support by Dr. Elisabeth Kubler-Ross http://www.ekrfoundation.org/five-stages-of-grief/ © 2013 Griswold International, LLC Lit Review http://bit.ly/XpZ6P9
  • 12. © 2013 Griswold International, LLC Lit Review Values, Emotions, Beliefs, and Attitudes Anxiety, depression, uncertainty, fear, anger, isolation Knowledge Understanding of PD and how to self-manage Surrounding Environment Financial issues, competing needs, access to care/services Support Network Awareness and access to family, friends, peers, advocacy Confidence Confidence in diagnosis, care team, treatment, ability to manage PD/treatment A model for assessing psychosocial factors
  • 13. © 2013 Griswold International, LLC Lit Review Highlighting a disconnect between prescribers and clients ClientPrescriber Primary focus on managing motor symptoms: • Primary motor symptoms: Resting tremor, slow movement, rigidity, unstable posture leading to loss of balance and falls. • Secondary motor symptoms: Freezing gait, difficulty with handwriting, mask-like expression, unwanted acceleration of movement. Primary focus on managing psychosocial (“hidden”) symptoms: • Depression, anxiety, and isolation • Insomnia • Frequent urination • Fatigue and loss of energy • Cognitive/memory changes • Excessive saliva • Vision and dental problems All of these symptoms impact work, financial issues, roles, family, hobbies, and relationships Disconnect Medical vs. Psychosocial
  • 14. © 2013 Griswold International, LLC Lit Review Bring on the Healthcare Extenders! Family/Friends Griswold Home Care Pharmacist Nurse (RN, LPN, APN) Government Agencies Discharge Planner Social Worker Yoga/Tai Chi/Pilates Instructor PT/OT/Speech Counselor Massage Therapist Health Coach 1.800.4PD.INFO (473-4636)
  • 15. © 2013 Griswold International, LLC National Parkinson’s Foundation Open Forum http://forum.parkinson.org/index.php?/topic/13992-the-hidden-symptoms-of-parkinsons/ If you happen to come across someone with Parkinson’s (we are out there!) you are likely to notice the tremor and the shuffling, unsteady walk. The symptoms you won’t see are the feelings of restricted movement, the frustrating disobedience the body has for sufferers’ conscious will and the subsequent feeling that you are a puppet whose strings are controlled by Parkinson’s. You will miss the sheer mind numbing exhaustion, the feelings of helplessness and depression, the urge to urinate every 5 minutes, the food that gets stuck in your throat because swallowing is affected, the irresistible sleepiness and the battle not to close yourself down in the face of all this. Social Media
  • 16. © 2013 Griswold International, LLC Social Media “Am I disabled now?” “Afraid I will choke”  “Adapting to life with Parkinson’s”  “Parkinson’s and dating!” Client discussion boards reveal hidden symptoms...
  • 17. © 2013 Griswold International, LLC Social Media “Husband with memory loss”  “Loneliness”  “Driving problems - what to do?”  “Dealing with depression and anger” Family caregiver discussion boards reveal hidden symptoms...
  • 18. © 2013 Griswold International, LLC My Pet Peeves - The Power of Humor Why don’t they make Velcro Shirts? BUTTONS: Hard to use, however the alternative is not pretty. TOOTHBRUSH: They go flying off my feet. Is going barefoot the solution? BOOTS, SHOES, SLIP-ONS, FLIP FLOPS: Always leads to more soup around the plate than in my stomach. SOUP: STRESS: I shake uncontrollably when under stress, a great tool when I want to win an argument with my spouse. http://www.parkinson.org/Personal-Stories/Ending-the-Silence-on-Parkinson-s
  • 19. © 2013 Griswold International, LLC WRITING: My biggest frustration - I avoid it like the plague. I love the look I get from immigration officers when they read my customs form. I just say, “sorry rough flight, there was a lot of turbulence.” CONTACT LENSES: SLEEP: Who needs it? I can never find the perfect position. I’m thinking of trying hammocks - will let you know how it works out… TIREDNESS: Especially late afternoon, whoever invented the siesta was on to something - probably had Parkinson’s and didn’t know it. BELT: Am I going to have to start wearing spandex pants? I guess I can just wear glasses; maybe I will look more intellectual ;) http://www.parkinson.org/Personal-Stories/Ending-the-Silence-on-Parkinson-s
  • 20. © 2013 Griswold International, LLC Advocacy WHATEVER IT TAKES to Beat Parkinson’s
  • 21. © 2013 Griswold International, LLC Solutions Webinar & Toolkit Breaking through the barriers to find real solutions
  • 22. © 2013 Griswold International, LLC Solutions Webinar & Toolkit Tools to address psychosocial symptoms of PD National Parkinson’s Foundation Depression: http://bit.ly/109iWfB What are the Treatment Options for Anxiety?: http://bit.ly/Z22JWx Depression Videos and Webcasts: http://bit.ly/17dh2OL
  • 23. © 2013 Griswold International, LLC Solutions Webinar & Toolkit Tools to address psychosocial symptoms of PD The Michael J. Fox Foundation for Parkinson’s Research Emotions and Parkinson’s Disease: http://bit.ly/14EMmq2 How are Depression and Parkinson’s Disease Linked? http://bit.ly/16oh9nq I have Parkinson’s Disease, it doesn’t have me #1: http://bit.ly/16wDZLq I have Parkinson’s Disease, it doesn’t have me #2: http://bit.ly/Xq3pKb
  • 24. © 2013 Griswold International, LLC Solutions Webinar & Toolkit Tools to address psychosocial symptoms of PD American Academy of Neurology: Practice parameter: treatment of non-motor symptoms of Parkinson’s disease. Report of the Quality Standards Subcommittee of the American Academy of Neurology. (2010). http://1.usa.gov/13RI3Z9 Additional Resources National Institute of Neurological Disorders and Stroke – Benefits of Tai Chi: http://1.usa.gov/Z22WJr Elisabeth Kubler- Ross Foundation: http://bit.ly/10vYjZO
  • 25. © 2013 Griswold International, LLC Solutions Webinar & Toolkit Tools to address psychosocial symptoms of PD WHATEVER IT TAKES to Beat Parkinson’s http://bit.ly/17gDohg
  • 26. © 2013 Griswold International, LLC Key Takeaways Points to remember Quality of life for PD clients is directly related to psychosocial issues that are rarely addressed or discussed with prescribers Healthcare extenders, tools, and resources can uncover “hidden” symptoms and provides solutions to overcome them
  • 27. © 2013 Griswold International, LLC Open Q&A 1. Click to expand if necessary 2. Type questions here
  • 28. © 2013 Griswold International, LLC National 24x7 Care Line: 800-GRISWOLD GriswoldHomeCare.com Brought to you by: Extraordinary Home Care at Affordable Rates Since 1982 Griswold Home Care offers access to affordable non-medical care options to assist your loved one. CareAssure Screening System™ The Griswold Golden Rule: We only approve caregivers we would trust in our own homes. QuickCare Placement™ We give each family access to the most experienced caregivers available. ValueCare Commitment™ Simple Rates. Unmatched Value. Our all- inclusive rates are among the most affordable.