About nine months ago, we decided to do just that. We spent an hour discussing why we felt so comfortable talking with each other. We agreed that our group created a sense of openness, trust, and being treated as a whole person. We also acknowledged that we don’t usually feel this way when interacting with others. Too often, we feel that others define us by our disease.

We wondered if other members of our Parkinson’s community had similar experiences and feelings. After reaching out to more people, including care partners, we learned two things: 1) people with Parkinson’s don’t talk about feelings much and 2) family care partners often feel as marginalized as their patients.

Throughout our research, we noticed similar themes, and an idea began to germinate. Why not draft a list of principles that could be used by patients, care partners, and the larger community to improve interactions?

Hence was born a Parkinson’s version of the Golden Rules. We consider it a living document and hope it is helpful to anyone with a chronic disease. And it works both ways. If we expect others to interact with us in this manner, we must interact this way ourselves.

1. I am a person not a disease.
2. Parkinson’s is only one of my life’s challenges.
3. I am an equal not an invalid.
4. Respect, kindness, and patience are the cornerstones of my relationships.
5. Offers of help are a valuable part of any interaction.
6. Using my skills and abilities for activities and projects is how I manage my disease and related fatigue, apathy, depression, anxiety, anger, and isolation.
7. My thoughts and ideas are important even if my voice is weak. I want to and expect to be asked to speak up when I can’t be heard.
8. There is a difference between helping and taking over.
9. Laugh with me as I laugh with you.
10. I have immense thanks and gratitude for all the ways people help and assist me.

Since our group adopted these rules we’ve noticed improvements in how we communicate. We are more civil. We’re listening more and talking less, allowing everyone to be heard. We use hand signals or even say “Speak up” when we can’t hear someone. We’ve had some ups and downs, but we recognize that changing the way we interact takes time, effort, and patience. We’ll get there.

Phil Horton and Eileen O’Reilly are active in the Colorado Springs Parkinson’s community. Phil and Judy, his wife of 54 years, camp throughout the west and Phil has rediscovered a passion for writing. Eileen stays busy with her Australian Shepherd, growing enormous vegetables, and running the Parkinson’s with Poles program, a walking class.