The image of Parkinson’s disease I called a caricature in a previous column about depression does not match how I see the illness, nor does it match what most people experience. We need a new face for the disease that reflects how people experience it, and that offers possibility instead of a prognostication of doom.
In an article titled “Time for a New Image of Parkinson Disease,” published in July in the journal JAMA Neurology, researchers Melissa J. Armstrong and Michael S. Okun wrote that, “… [P]eople with Parkinson disease are living for many years without the profound disability implied by [Sir William Richard] Gowers’ sketch.”
Most people who have the disease don’t look like the classic image first identified by Gowers in 1886 in that now famous sketch. His description of an aged, frail, trembling man has been carried through the decades. This classic image of Parkinson’s introduces bias that affects inaccurate diagnoses, leads to missed diagnoses, particularly in women, and contributes to the disease being invisible until it fits the characteristics of that classic image.
With the image of Gowers’ sketch comes a view that all must end badly, and the possibilities for a quality life are severely limited. It’s a tough box to climb out of. A new face of Parkinson’s needs to be inserted into education given to medical professionals. This new approach could cut down on misdiagnoses prior to receiving a Parkinson’s diagnosis.
Armstrong and Okun discuss the stigma attached to the classic Parkinson’s image, a bias that shapes the mind into making a box into which all things Parkinson’s must go. The classic image comes with a mental frame about what may occur, and often a lurking shadow of fear about the disease.
This bias may even extend into how we think about helping people with Parkinson’s, including how we help ourselves. The authors claim the classical image of Parkinson’s can become a self-fulfilling prophecy, and in such a way, impede well-being.
I have redesigned the image reflecting my chronic illness. I needed a new face for it. I don’t have to wear that old image just because the medical profession thinks it’s what the illness must look like. Trust me when I say I have struggled with that old image. One neurologist I saw suggested I stop my medications so he could see signs of that image.
I have wanted to display that caricature just so my “invisible” illness would be seen. Maybe then my suffering would be understood. It felt like an injustice that I had to harm myself to meet the illusions of society. I couldn’t wear it anymore. After searching, I found a new face. There’s a new guy in town.
The new face I use is the best face I can find. It’s one that fits science and is filled with possibility. I frame the chronic illness as a brain injury and open to brain healing — simultaneously. The brain is responsible for both the illness and how we deal with it, including a sacred healing process. It includes the wellness map and all the tips for a quality of life included in my columns. That’s my best face going forward.
I don’t believe in that old caricature of Parkinson’s disease. I think it contributes to being ill and limits possibilities. I believe in the power of the human brain to mold itself around an injury to function better despite the insult. The brain can change in response to what we ask it to do. We can think, act, and feel in a way that provides correct stimulation of the pathways necessary for building a bridge over the damaged area.
This is a model I used in my clinical career to help others suffering from a brain insult. Now I am applying that model to my own life and sharing the insights with my readers. I am pleased with the discoveries like the role of the “conductor” that resulted from wearing this new face. It’s nice not to be that “old decrepit, depressed guy.”
It’s my new face going forward.
What is the face you wear? Has it been helpful or problematic? How? Please share in the comments below.
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, and are intended to spark discussion about issues pertaining to Parkinson’s disease.