Fighting Back Against Parkinson’s and Holding onto Hope

I often refer to my journey with Parkinson’s disease (PD) as a battle I am fighting. One Merriam-Webster definition of battle is “an extended contest, struggle, or controversy.” Another is “a struggle to succeed or survive.” To go to battle is to engage in a fight or a struggle. It is to put forth a determined effort.
You’ve likely heard someone at some part of your Parkinson’s journey say that no two cases are alike when it comes to this disease. Everyone with Parkinson’s wears the disease differently. Some can appear not to have it at all, despite being many years post-diagnosis. Others may have been diagnosed recently and can look as if they have lived with the disease for quite some time.
We’re all different, and because we are all different, we respond differently to life situations, including our PD encounters. For one patient who doesn’t struggle as much as another with their symptoms, life may not seem quite so hard. For another who struggles a great deal on a daily basis, it may feel like more than a struggle. It may feel as if they have entered into the throes of a real battle or a knock-down, drag-out fight.
I received a comment from a reader who didn’t agree with my use of the word “fight” to describe any response to a neurological disease. (I thank her for the feedback and welcome more!)
The reader referred to quotes from The Atlantic‘s 2014 article, “The Trouble With Medicine’s Metaphors”:
“… studies that have interviewed cancer patients around the time of diagnosis and followed them for years after have found that patients who view their disease as an ‘enemy’ tend to have higher levels of depression and anxiety, and poorer quality of life than those who ascribe a more positive meaning. They also tend to report higher pain scores and lower coping scores.”
The article, by Dhruv Khullar, continues:
“More recent work has found that patients encouraged to ‘fight’ may feel that they have to suppress their emotional distress and maintain a positive attitude to avoid upsetting family members—and clinicians.”
The reader who commented on my column said, “There is an assumption, when using the word ‘fight,’ that there is a possibility that the disease victim can ‘win’ and when the disease wins (always wins in the end) it seems like the victim was somehow at fault, was not strong enough, wise enough, ‘lost the fight’ or whatever. This is not so – the disease always gets the victim in the end.”
I understand where this reader is coming from (truly, I do). But to me, the comment unintentionally serves to strip me of hope by getting me to go back to that place at the beginning of my journey. I knew what Parkinson’s was. I knew what it could — and very well might — do. But I couldn’t sit by and watch it claim my spirit.
I still had hope, and I knew that as long as I held fervently and tightly to that hope, I may go down. But I would go down

Source: Parkinson's News Today

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