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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.
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