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
“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 fighting.
Last night, I attended my first Rock Steady Boxing class. Their motto is “Fighting Back Against Parkinson’s.” You have to fight to win. Just as having PD looks different on everyone who has it, winning at PD looks different for everyone as well.
I can’t tie my shoes anymore, but I can fasten the Velcro on my sandals. That’s a win. I can start out my day shuffling, but after my first round of meds, I’m ready to walk with the best of them. That’s a win. I can’t work in my garden for hours on end anymore, but I can give it 20 to 30 minutes a day. That’s a big win.
I do not own a pair of rose-colored glasses. Some of us take harder punches from this disease than others, myself included. That said, reminding a person with any disease of any severity that hope is always available to them is one of the greatest things you can do for them. It’s not a question of will; it’s a question of faith. When you have faith, you have hope, and hope gives you courage. Courage enables you to put forth perhaps the greatest effort, the greatest fight, you’ve ever been called to put forth. If you fight, this may be the day you can button your shirt. And I’d call that a win.
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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.
https://parkinsonsnewstoday.com/2018/09/24/parkinsons-fighting-back-holding-onto-hope/
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