It started with the observation that my physical symptoms
made me feel I was living immersed in treacle. Every movement was fighting
against the limitations imposed by the disease. It can be distressing to
acknowledge your limitations. However, out of this came the realisation that my
body may be restricted but my mind is free. I can think and feel and have a
rich mental life despite my Parkinson’s. Therefore, my diagnosis hasn’t
consumed who I am. Because of the preservation of at least parts of me (both
physical and mental), I realised I still have the self-will and power to
choose. Importantly, I can’t change the fact of the disease but I can choose
how to react to it.
Next came the difficult issue of the prognosis of
Parkinson’s. Prognoses are based on the accumulated knowledge of historical
cases. Due to its historical nature, the prognosis of Parkinson’s has yet to
include my case. Therefore, it can only be a guide to the progression of my
disease. Individuals have individual symptoms; mine is a unique instance of
Parkinson’s. It follows that a prognosis does not predetermine my future.
This leads to the following conclusion: there is space
for me within both the diagnosis and prognosis of Parkinson’s. What should be done with this space? I can make
adaptations in my life to resist the physical symptoms. I can also enjoy the
mental life this space provides.
It is impossible to accept a diagnosis when it overwhelms
you and obscures self-perception. Acceptance comes when you claim a diagnosis
as yours and in doing so acknowledge the preservation of who you are within
that diagnosis. Acceptance is living alongside a disease.
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