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