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Who are we really?

Are we People with Parkinson’s (PwP)?

Are we a group of symptoms that may be uncomfortable, embarrassing or just irritating?

When we are diagnosed with Parkinson’s disease, do we stop being Rachel, Fred, Margaret or Robert and become a “case”, a “patient” or a number on a medical file?

It is easy to slip into the habit of being a patient with Parkinson’s, focus on reducing symptoms, or perhaps pretend that it is not happening to us until we are forced to take medication. It is easy to let the diagnosis and the standard prognosis of “helpless, hopeless, give up and wait for a cure” to consume us.

But that is NOT who we are.

We are individuals with life-journeys spanning many generations. We are complex and colourful, full of unrecognised wisdom gained through our life experiences. We are beings with thoughts and emotions; we feel love, dislike, calmness, pain, despair, hope and joy.

We are evolved from our ancestors’ experiences, culture, education, family teachings and expectations, and personal experiences.

When we present ourselves to a practitioner who says they will “care for us”, we should be able to expect that they will each take some time to explore our background, life history, family background, feelings and emotions. But this takes time, and too many practitioners (both from Western Allopathic Medicine – WAM – and Complementary/Alternative Medicine – CAM) are in too much of a hurry to understand the unique being we each are.

Too often, I listen to patients tell me that they attended a consultation, were told that they “have Parkinson’s Disease”, advised to take some medication and increase the dose after a week or two, and come back in six months. Next patient!

There is no attempt to understand the life journey that led their body to express discomfort (symptoms), current lifestyle that may be supportive or detrimental to health, or individual dreams and aspirations.

This is not good enough! We are not a “Parkinson’s package” to be popped into a box labelled PwP, gratified with some pills and an occasional visit, and left with no dreams of new adventures, discoveries or triumphs.

We are a new and unique colour on the artist’s palette. We are the golden thread in the weaver’s loom. We are people with talents, skills, experience and wisdom. We deserve to be treated as unique blessings in a world that strives to push us into uniformity.

We are not our illness, or our symptoms. We are not our symptoms or our treatment. We are not a PwP or a patient.

You are you and I am me. Let us celebrate our uniqueness.


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