parkinsons journey 8.11.15
TRANSCRIPT
Your Parkinson’s Journey
Developed by: Kathryn Krug, MS MFTIClinical Services Director
Today I Will Cover• The Journey• Compassion• Own Your Care • Build Your Professional Service Team • Build Your Support Team
The Journey
• Parkinson’s disease is highly individualized • No two patients will have the exact same set of symptoms• Not everyone moves through all stages of Parkinson’s disease
• Adjusting throughout the journey • New Normal
Compassion • Give yourself time• Allow the emotions & Be kind to yourself
• Accept• Remember your spirituality
• Life is worth living with Parkinson’s disease• What am I experiencing right now? • Avoid comparisons
• What do I want to do to live the quality of life that I desire?
Own Your Care• Be an Informed Consumer• Be Organized• Advocate• Build Your Professional and Supportive Team
Be an Informed Consumer • Identify Your Parkinson’s
• Motor / Non-Motor / Cognitive / Mood / Financial
• Get Educated• Go Online • Ask the professionals • Look for what pertains to you
• Join Groups• Support groups• Discussion groups
Be Organized & Prepared• Keep Journal
• Current Medications with detailed instructions for taking them and possible effects • All doctor information and emergency information • Keep record of mood changes and proximity to events or medications• Daily difficulties (physical, cognitive and emotional)• Any changes • Organize labs and lab results • Record surgeries / Hospital stays / Allergies
• Be ready for emergencies• Emergency Medication Supply and Hospital Bag • PA Emergency door hanger and pamphlet
Advocate
• Use Your Knowledge • You know what you need
• Can Be Uncomfortable • Learn the Skills
• Be clear and precise • Use “I” statements• Be a broken record but be prepared to listen • Use appropriate channels to report issues
• Remember Your Rights
Build Your Professional Service Team• What Services Do I Need?
• Speak to a healthcare professional• Bring your journal
• What Services Can I Afford?• Contact Your Insurance Company
• Evaluate Potential Team Members• How to hire worksheet • How to address dissatisfaction
• Comfort• Transfer of Information between
Doctors• Respect and Respectable• Answer Questions• Take all symptoms seriously • Contacting your team in between
appointments• Back up staff with knowledge
Build Your Support Team• Select Them
• Availability • Knowledge of Your Parkinson’s• Uplifting• Motivator • Respite provider • Patient
• Remove Negativity
• Stress can cause increase in symptoms
• Family is not always supportive • Crisis?
• Remember Professional & Community Based Supportive Services!
Helpful Tips• Be Prepared for Doctors visits • Be Prepared for the Hospital• Revise Your Journey as Needed
• YOU CAN AND WILL BE IN CONTROL OF YOUR JOURNEY
Parkinson’s Association 8555 Aero Drive Ste 308
San Diego CA 92123Ph: 877.737.7576