Created by members of the Colorado Springs Parkinson’s Support Group/Colorado Parkinson Foundation and fellow members of the Colorado Springs Parkinson’s Community.
As people with Parkinson’s, we often talk about knowledge or symptoms or best practices. Human interaction or feelings is an area we almost never discuss. Perhaps the following will cause some thoughts to surface with you and provide a basis for further discussion.
A small Parkinson’s breakout session is held every other Tuesday after a Parkinson’s exercise class at the Colorado University at Colorado Springs Lane Center. We discuss a wide range of Parkinson’s related subjects. Four months ago, we spent the hour discussing why we felt so comfortable talking with each other. Yes, five or six grumpy old men and, occasionally, one woman sitting around discussing feelings does sound like good cartoon material. Our answers centered around the ideas of openness, trust and being treated as a whole person. We have discussed these expectations several more times and decided to delve a little deeper. Did we feel the same way with Care Partners, “normal” people and other People with Parkinson’s? Not usually! We observed from personal experience and observations that Parkinson’s human interactions were very one dimensional. Being old, grumpy and sharing a little bit of apathy, we felt someone else must have already written about this.
We did internet searches and could not find any information regarding social expectations of people with a chronic disease. Some diseases did have a Bill of Rights and we considered a Parkinson’s Bill of Rights but most examples were too medical in nature for our purpose. We then expanded the idea of Expectations within our Colorado Springs Parkinson’s community. We contacted twenty-five people with Parkinson’s and asked each to send us their Expectations. We received twenty responses.
As one might expect, the responses added new thoughts and expectations. After much time condensing and rewriting these expectations into a single page, we came to two conclusions:
- The intention of Expectations could not and would not be a set of demands, but would be a set of principles to be used as a basis for dialogue between individuals and within groups.
- If we expect others to treat us in a certain way, we must treat others in almost the same way. Think of our expectations as becoming our version of “The Parkinson’s Golden Rule”. The set of expectations is stated from a Parkinson’s person point of view with the understanding the same expectations, with minimum change, apply as to how we, as a person with Parkinson’s, treats everyone.
Once we had finished polishing our thoughts and comfortably resting on our laurels, someone asked “Now what?” We decided to test our product. We held a breakout session in November to discuss Expectations and to talk in depth on a couple of items on the list. The session was composed of six people with Parkinson’s and five Care Partners (male/female, young onset and some of the old grumpy set) and the discussion lasted for two hours. After reviewing Expectations and getting to consensus, one of the topics discussed was how does a Care Partner/Parkinson’s pair or group come to agreement on time urgency and safety considerations versus the idea of the Parkinson’s person doing as much as he/she can do. Lively discussion as most had not discussed the issue with their Partner let alone anyone else. The other issue discussed was being treated as an equal. Emotional discussion including, for example, feelings of being marginalized or treated as one dimensional by others being brought up by BOTH Care Partners and Parkinsonians.
Everyone participated and all thought we should continue to meet on a regular basis. We met again at the end of February and used the principles in Expectations to guide our discussions and to generate action items and projects. Expectations is going to be used as breakout material for an upcoming monthly meeting of the Colorado Springs Parkinson’s Support Group.
We think of Expectations as a living document and look forward to your comments, suggestions, and feedback should you give Expectations a try in your relationships and support groups.
Expectations of Ourselves and Others: A Parkinson’s Version of the Golden Rule
- Treats me as a person and not as a disease
- Understands Parkinson’s is only one of my life’s challenges
- Treats me as an equal and not as an invalid
- Interacts positively with respect, kindness and patience as the cornerstones of our relationship
- Understands offering help to be of value as part of a mutual agreement between us
- Understands inclusion and utilization of my skills and abilities in activities and projects to be part of successfully battling Parkinson’s and related fatigue, apathy, depression, anxiety, anger, and isolation
- Understands my thoughts and ideas are important even though my voice is weak. It is not only ok to ask me to speak up, i want and expect you to do it.
- Understands the difference between assistance and taking over
- Laughs with me as I laugh with you
- Understands and accepts my thanks and gratitude for all the ways you help and assist me
About the authors
Expectations is the most ambitious project to date of a Colorado Springs Parkinson’s working group. The group’s goal is to be activists in increasing quality of life for People with Parkinson’s and their Caregivers. Approximately thirty people participated in idea forming, data collection, compilation, writing, editing and testing Expectations. Current projects for subsets of the group include preparing a comprehensive directory for local services, increased support for those newly diagnosed, improving self-efficacy, and an initial look at improving quality of life for homebound. The people producing Expectations are all part of the Colorado Springs Parkinson’s Community and most are members of the Colorado Springs Parkinson’s Support Group.
The Colorado Springs Parkinson’s Support Group has 500 members and is part of the Colorado Parkinson Foundation. The main goals of the Support Group are Education, Support, and Fellowship for People with Parkinson’s and Caregivers through monthly education and fellowship meetings, six active subgroups, and an annual symposium.