Uncovering the Hidden Symptoms of Parkinson’s Disease

© 2013 Griswold International, LLC

Uncovering the

of Parkinson’s Disease (PD)


CelebratingNationalParkinson’sDiseaseMonth

"Every person withParkinson's should know

that they can help fight the impactof 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


Thank you for your courage, energy, and dedication!

Professional CaregiversHealthcare Providers

Family Caregivers Living with PD


Our Goal for TodayPut the focus on the “hidden” symptoms of Parkinson’s Disease and provide tools to

understand and overcome them.


Chris Kelly, MEd Director of Learning & DevelopmentGriswold Home Care

Presented by:


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)


Lit Review

Social Media

Advocacy

Solutions Webinar & Toolkit


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 WRITINGSolutions


Lit Review“Scientists showedthat the impact of

depression on health statusis almost twice that ofthe motor impairmentsuniversally associated

with Parkinson’s.”Parkinson’s Outcomes Project – 2012

http://www.parkinson.org/outcomes


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-RossStages of Grief

ANGER

BARGAINING

ACCEPTANCE

DENIAL

DEPRESSION

Information andCommunication

Guidance and Direction

Emotional Support

by Dr. Elisabeth Kubler-Ross

http://www.ekrfoundation.org/five-stages-of-grief/


Lit Review

http://bit.ly/XpZ6P9


Lit ReviewValues, 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

ConfidenceConfidence in diagnosis, care

team, treatment, ability to manage PD/treatment

A model for assessing psychosocial factors


Lit ReviewHighlighting 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 problemsAll of these symptoms impact work, financial issues, roles, family, hobbies, and relationships

DisconnectMedical

vs.Psychosocial


Lit Review Bring on the Healthcare Extenders!

Family/Friends

GriswoldHome Care

Pharmacist

Nurse (RN, LPN, APN)

GovernmentAgencies

Discharge Planner

Social WorkerYoga/Tai Chi/Pilates

Instructor

PT/OT/Speech

Counselor

Massage Therapist

Health Coach

1.800.4PD.INFO (473-4636)


National Parkinson’s Foundation Open Forumhttp://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


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...

http://www.ekrfoundation.org/five-stages-of-grief/


Social Media

“Husband withmemory loss”

“Loneliness”

“Driving problems -

what to do?”

“Dealing with depression and anger”

Family caregiver discussion boards reveal hidden symptoms...


My Pet Peeves - The Power of Humor

Why don’tthey make Velcro

Shirts?

BUTTONS:

Hard to use, howeverthe 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 moresoup around theplate 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


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


Advocacy

WHATEVER IT TAKESto Beat Parkinson’s



Breaking through the barriers to find real solutions



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




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




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




WHATEVER IT TAKESto Beat Parkinson’shttp://bit.ly/17gDohg


Key Takeaways

Points to remember

Quality of life for PD clients is directly related to psychosocial issues that are rarely addressed ordiscussed with prescribers

Healthcare extenders, tools, and resources can uncover “hidden” symptoms and provides solutions to overcome them


Open Q&A

1. Click to expand if necessary

2. Type questions here


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Uncovering the Hidden Symptoms of Parkinson’s Disease

Health & Medicine

Transcript of Uncovering the Hidden Symptoms of Parkinson’s Disease