Are you a Parkinson's Patient?

Think before you answer this question. It is not as simple as it appears.

By definition, a patient is a person receiving medical treatment. To be a patient therefore means to be actively engaged by the medical system in some way. But when, if ever, does a person with a chronic illness like PD stop being engaged by the medical system? That is, when does someone stop being a Parkinson's patient?

I think the answer is when one stops referring to oneself as a "Parkinson's patient."

My experience as a psychologist has taught me that the words people use are no accident. They reveal a great deal about how one views, interprets, and, most importantly, responds to the world. Every person weaves a world view into word choice. My job is to look for the connotation, the emotional picture a person conjures with the words they choose. For example, I could describe someone who is careful with money as "frugal". I might also describe that person as "cheap." The former description suggests a positive connotation, a person who habitually avoids waste. The latter has a more negative suggestion of habitual unwillingness to spend money. My decision to use one word over the other reflects not just my feelings about the person being described but also my own values. The word choice tips those listening carefully about how I might respond to the individual I am talking about.

It seems to me that when we use the term "Parkinson's patient," the connotation is one of some degree of helplessness. My concern here is that a person using the term as a personal description might begin to envision a life perpetually locked into the medical system. The connotation of "Parkinson's patient" is dependence, a loss of personal agency in the face of the illness. Describing oneself as a Parkinson's patient seems to hint that the disease has taken over the person's life.

There are times it is appropriate to use the term "patient", such as when you are in the neurology office or the pharmacy picking up prescriptions, perhaps even when you are taking medications. However, are you really a patient during those interim moments, the times you are at your job or sharing a meal with your family? Are you a Parkinson's patient when you enjoy friends, cheer for your team, watch television, talk on the phone, celebrate a holiday or complete your income taxes. I would argue the answer must be no.

This isn't a matter of speaking euphemistically. Parkinson's disease can make heavy demands on a person but it should never be presented as the essence of an individual life, who or what a person is. A person who has Parkinson's disease is a heavy consumer of medical services and has many moments of being a patient of one or more members of the medical community. However, those moments of interaction with the medical community are episodic and something else unfolds in between. John Lennon is credited with saying "Life is what happens when you are making other plans." To paraphrase Lennon, "Life is what happens between medical appointments. "

It is nearly impossible to talk about your life without mentioning that you have PD. It is an aspect of your life, certainly an important one. You press back against PD by not letting it define you.

So, as you reflect on this past year and embark on a new one, I ask once again. Are you a Parkinson's patient?

Regards,

Dr. Paul

NOTE: Dr. Paul Short is neither an agent nor employee of ADPA or any of its affiliate organizations. The views expressed in this blog are the opinions of Dr. Short and do not represent the opinions or endorsement of APDA. The information contained on this site is for your general information only and is not intended as, or a substitution for, medical advice. You should also be aware that the information on this site may not reflect the most current medical developments, nor is it provided in the course of a physician - patient relationship. You should always consult your physician or other qualified healthcare provider or expert with any questions or concerns you may have regarding a health or medical condition. You should never disregard professional medical advice, or delay in seeking it, because of something you have read on this site.

About the Author

Paul Short, PhD

Dr. Paul Short, The Parkinson's Coach, provides Internet-based coaching to individuals and famlies challenged by Parkinson's disease and helps them develop personalized plans for coping with the disease.