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Uncovering the Hidden Symptoms of Parkinson’s Disease

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Uncovering the Hidden Symptoms of Parkinson’s Disease

Uncovering the Hidden Symptoms of Parkinson’s Disease

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  • 1. © 2013 Griswold International, LLCUncovering theof Parkinson’sDisease (PD)
  • 2. © 2013 Griswold International, LLCCelebratingNationalParkinson’sDiseaseMonth"Every person withParkinsons should knowthat they can help fight the impactof the disease. It is never too late tosee improvements in ones daily life.This campaign brings to light themany ways that anyone can takeaction, and arms them with theresources they need to live theirbest life with Parkinsons.”Joyce Oberdorf , NPFs President and CEO
  • 3. © 2013 Griswold International, LLCThank you for your courage, energy, and dedication!Professional CaregiversHealthcare ProvidersFamily Caregivers Living with PD
  • 4. © 2013 Griswold International, LLCOur Goal for TodayPut the focus on the “hidden” symptoms ofParkinson’s Disease and provide tools tounderstand and overcome them.
  • 5. © 2013 Griswold International, LLCChris Kelly, MEdDirector of Learning & DevelopmentGriswold Home CarePresented by:
  • 6. © 2013 Griswold International, LLCAbout Parkinson’sDiseaseAnalogy: 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, youbrake and when the green light comes on, you take your foot off thebrake and depress the gas pedal to go. People with Parkinson’sDisease have lost the neurons that release dopamine, so they havetheir foot perpetually stuck on the brake. It becomes very difficult tocontrol movement.DopamineTransmittingneuronReceptor cellHealthy Patient PD Patient(D. Surmeier, 2008)
  • 7. © 2013 Griswold International, LLCLit ReviewSocial MediaAdvocacySolutions Webinar & Toolkit
  • 8. © 2013 Griswold International, LLCBrainwriting is…• a fun, engaging way to brainstorm• sharing as many ideas as possible within a short timeframeBrainwriting 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 answersBrainwriting Outcomes• Peer-to-peer learning and sharing• A publication that benefits others who are living with MSImportant• Avoid sharing any information that you would not want others to seeBRAIN WRITINGSolutions
  • 9. © 2013 Griswold International, LLCLit Review “Scientists showedthat the impact ofdepression on health statusis almost twice that ofthe motor impairmentsuniversally associatedwith Parkinson’s.”Parkinson’s Outcomes Project – 2012http://www.parkinson.org/outcomes
  • 10. © 2013 Griswold International, LLCLit ReviewFACIAL EXPRESSIONBALANCEMOBILITY INDEPENDENCE ROLESWhen reading through the symptomsof Parkinson’s Disease, you frequentlysee 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• ExploringOptions• New PlanIn Place• Moving On• AdjustingKübler-RossStages of GriefANGERBARGAININGACCEPTANCEDENIALDEPRESSIONInformation andCommunicationGuidance andDirectionEmotionalSupportby Dr. Elisabeth Kubler-Rosshttp://www.ekrfoundation.org/five-stages-of-grief/© 2013 Griswold International, LLCLit Reviewhttp://bit.ly/XpZ6P9
  • 12. © 2013 Griswold International, LLCLit ReviewValues, Emotions,Beliefs, and AttitudesAnxiety, depression, uncertainty, fear,anger, isolationKnowledgeUnderstanding of PD andhow to self-manageSurroundingEnvironmentFinancial issues,competing needs, accessto care/servicesSupportNetworkAwareness andaccess tofamily, friends,peers, advocacyConfidenceConfidence in diagnosis, careteam, treatment, ability tomanage PD/treatmentA model for assessing psychosocialfactors
  • 13. © 2013 Griswold International, LLCLit ReviewHighlighting a disconnect betweenprescribers and clientsClientPrescriberPrimary focus on managingmotor symptoms:• Primary motor symptoms:Resting tremor, slowmovement, rigidity, unstableposture leading to loss ofbalance and falls.• Secondary motorsymptoms: Freezing gait,difficulty with handwriting,mask-like expression,unwanted acceleration ofmovement.Primary focus on managingpsychosocial (“hidden”)symptoms:• Depression, anxiety, andisolation• Insomnia• Frequent urination• Fatigue and loss of energy• Cognitive/memory changes• Excessive saliva• Vision and dental problemsAll of these symptoms impactwork, financial issues, roles,family, hobbies, and relationshipsDisconnectMedicalvs.Psychosocial
  • 14. © 2013 Griswold International, LLCLit Review Bring on the Healthcare Extenders!Family/FriendsGriswoldHome CarePharmacistNurse(RN, LPN, APN)GovernmentAgenciesDischarge PlannerSocial WorkerYoga/Tai Chi/PilatesInstructorPT/OT/SpeechCounselorMassage TherapistHealth Coach1.800.4PD.INFO(473-4636)
  • 15. © 2013 Griswold International, LLCNational Parkinson’s Foundation Open Forumhttp://forum.parkinson.org/index.php?/topic/13992-the-hidden-symptoms-of-parkinsons/If you happen to come across someone withParkinson’s (we are out there!) you are likely tonotice the tremor and the shuffling, unsteadywalk. The symptoms you won’t see are thefeelings of restricted movement, the frustratingdisobedience the body has for sufferers’conscious will and the subsequent feeling thatyou are a puppet whose strings are controlled byParkinson’s. You will miss the sheer mindnumbing exhaustion, the feelings of helplessnessand depression, the urge to urinate every 5minutes, the food that gets stuck in your throatbecause swallowing is affected, the irresistiblesleepiness and the battle not to close yourselfdown in the face of all this.Social Media
  • 16. © 2013 Griswold International, LLCSocial Media“Am Idisablednow?” “Afraid Iwill choke” “Adaptingto life withParkinson’s” “Parkinson’sand dating!”Client discussionboards revealhidden symptoms...
  • 17. © 2013 Griswold International, LLCSocial Media“Husband withmemory loss” “Loneliness” “Drivingproblems -what to do?” “Dealing withdepressionand anger”Family caregiverdiscussion boardsreveal hidden symptoms...
  • 18. © 2013 Griswold International, LLCMy Pet Peeves -The Power of HumorWhy don’tthey make VelcroShirts?BUTTONS:Hard to use, howeverthe alternative isnot pretty.TOOTHBRUSH:They go flying off my feet.Is going barefootthe solution?BOOTS, SHOES,SLIP-ONS, FLIP FLOPS:Always leads to moresoup around theplate than in mystomach.SOUP:STRESS:I shake uncontrollablywhen under stress, a greattool when I want to winan argument with myspouse.http://www.parkinson.org/Personal-Stories/Ending-the-Silence-on-Parkinson-s
  • 19. © 2013 Griswold International, LLCWRITING:My biggest frustration - I avoid itlike the plague. I love the look I getfrom immigration officers when theyread my customs form. I just say,“sorry rough flight, there was alot of turbulence.”CONTACT LENSES:SLEEP:Who needs it? I can never findthe perfect position. I’m thinkingof trying hammocks - will let youknow how it works out…TIREDNESS:Especially late afternoon,whoever invented the siestawas on to something -probably had Parkinson’sand didn’t know it.BELT:Am I going to haveto start wearingspandex pants?I guess I can justwear glasses; maybeI will look moreintellectual ;)http://www.parkinson.org/Personal-Stories/Ending-the-Silence-on-Parkinson-s
  • 20. © 2013 Griswold International, LLCAdvocacyWHATEVER IT TAKESto Beat Parkinson’s
  • 21. © 2013 Griswold International, LLCSolutions Webinar& ToolkitBreaking through the barriersto find real solutions
  • 22. © 2013 Griswold International, LLCSolutions Webinar& ToolkitTools to addresspsychosocialsymptoms of PDNational Parkinson’s FoundationDepression:http://bit.ly/109iWfBWhat are the TreatmentOptions for Anxiety?:http://bit.ly/Z22JWxDepression Videosand Webcasts:http://bit.ly/17dh2OL
  • 23. © 2013 Griswold International, LLCSolutions Webinar& ToolkitTools to addresspsychosocialsymptoms of PDThe Michael J. Fox Foundation for Parkinson’s ResearchEmotions andParkinson’s Disease:http://bit.ly/14EMmq2How are Depression andParkinson’s Disease Linked?http://bit.ly/16oh9nqI have Parkinson’s Disease,it doesn’t have me #1:http://bit.ly/16wDZLqI have Parkinson’s Disease,it doesn’t have me #2:http://bit.ly/Xq3pKb
  • 24. © 2013 Griswold International, LLCSolutions Webinar& ToolkitTools to addresspsychosocialsymptoms of PDAmerican Academy of Neurology: Practice parameter: treatmentof non-motor symptoms of Parkinson’s disease. Report of theQuality Standards Subcommittee of the American Academy ofNeurology. (2010).http://1.usa.gov/13RI3Z9Additional ResourcesNational Institute ofNeurological Disordersand Stroke –Benefits of Tai Chi:http://1.usa.gov/Z22WJrElisabeth Kubler-Ross Foundation:http://bit.ly/10vYjZO
  • 25. © 2013 Griswold International, LLCSolutions Webinar& ToolkitTools to addresspsychosocialsymptoms of PDWHATEVER IT TAKESto Beat Parkinson’shttp://bit.ly/17gDohg
  • 26. © 2013 Griswold International, LLCKey TakeawaysPoints to rememberQuality of life for PD clients is directly related topsychosocial issues that are rarely addressed ordiscussed with prescribersHealthcare extenders, tools, and resources canuncover “hidden” symptoms and provides solutions toovercome them
  • 27. © 2013 Griswold International, LLCOpen Q&A1. Click to expandif necessary2. Type questions here
  • 28. © 2013 Griswold International, LLCNational 24x7 Care Line:800-GRISWOLDGriswoldHomeCare.comBrought to you by:Extraordinary Home Careat Affordable Rates Since 1982Griswold Home Care offers access to affordablenon-medical care options to assist your loved one.CareAssure Screening System™The Griswold Golden Rule: We only approvecaregivers we would trust in our own homes.QuickCare Placement™We give each family access to the mostexperienced caregivers available.ValueCare Commitment™Simple Rates. Unmatched Value. Our all-inclusive rates are among the most affordable.