Let’s open a can of worms. It’s something that’s been bothering me for some time now and I believe it’s the right time to call it out. It’s one word. Seven letters. Not that large, but the consternation and discussions I have had around it astound me.
I’m going to write the word out for you and I want you – yes you – yes really – to write down the first thing you think of. Actually, write three words associated with this little, ickle, harmless word.
D I S E A S E
I know. It’s just a word. I’ll admit that personally I don’t actually care what one chooses to call this thing, this awful unwelcome companion. Yet many people are deeply unhappy with the word’s use when discussing The Shaking Palsy.
Now I must point out that I’m not ungrateful to James Parkinson. He was clearly an intelligent man, calling for improvement of many things, including the protection of the mentally ill and universal suffrage. However, his name was given to lots of stuff, including quite a few fossils. He was very into palaeontology. Yet he himself named this thing ‘The Shaking Palsy’ or paralysis agitans. Now. It feels like a bit of a gobful when you look at it, but it’s no worse that ‘Parkinson’s Disease’.
The person responsible for naming it after the good doctor was in fact Jean-Marie Charcot, often thought of as the founder of modern neurology. He studied paralysis agitans for over a decade, and his works were groundbreaking. I guess it was pretty nice of him to rename it after James Parkinson, especially as the latter studied just three of his own patients and three other people he observed in the street.
So why Parkinson’s Disease? I guess back then people weren’t too fussed about patient sensibilities. Besides, if one was diagnosed with this, your chances of being physically able and motivated enough to complain were quite limited. We are indeed lucky to be living in the modern age of medicine. However. Lots of us much prefer to simply call this ‘Parkinson’s’. Why not? People still know what it means. Must we really stick the extra ‘disease’ on the end? What does it add, aside from a feeling of foreboding, disgust and fear?
Yes. I really think that. I looked up the definition of disease. It’s clear that Parkinson’s fits the description. But so do many other things. Illness falls into this same vague categorisation. I also looked up the word ‘Disorder’. This too fits the same definition of disease, but without the same connotations. Why then, can’t we call this ‘Parkinson’s Disorder’, or my own personal favourite, ‘Dopamine Deficiency Disorder’ or ‘DDD’.
I note with interest that many Parkinson’s Charities have dropped the word ‘disease’ from their literature and signage. Along with it they lose the fetid, foul, depressing assumptions that are linked with this word.
Yet others still throw it around with abandon. Whilst writing a media release for an upcoming show about Parkinson’s that I was in, I decided to remove the word ‘disease’. The reason was that so many people with paralysis agitans have complained bitterly about its use. They feel it labels them as dirty, somehow unclean, and makes them feel depressed. Yet when I explained this, the response I received from someone in a large Parkinson’s organisation was, but haven’t you seen how much it’s used overseas? In the famous words of Rhett Butler, “Frankly my dear, I don’t give a damn.” Lots of things are done overseas. This is New Zealand. Why do we have to follow what everyone else does? It’s hardly the way one would go about discovering new things.
Furthermore, doesn’t anyone care about what the very people that must live with this awful thing, day after day, think about it? It’s bad enough to deal with it constantly, but to hear that the very people that are supposed to be there to support you label you diseased simply adds insult to injury.
Personally I don’t care if you call me diseased or not. But I have a sick mind, so what would I know? However I strongly feel that those that place themselves in the positions of authority on this subject ought to show more compassion and empathy to those that they claim to serve. Without it, they themselves expose themselves as uncaring and unkind. It displays a basic lack of understanding around patient care and support. The system needs to be challenged in order to continue to improve.
I myself will continue to deal with my DDD the best way I know how. With a cheery smile, a dose of dopamine-inducing tablets and a positive can-do attitude.
Until next time. Kitty.
If you feel similar, if you need help or feel unhappy:
Reach out to your health professional, doctor, friend or family member. Please don’t allow yourself to feel alone and unhappy. There are people out there to help you.
Kitty Fitton is a motivational speaker, MC and comedian. She is also a full-time blogger and writer. She is mother to four small people and was very cross to discover she had Parkinson’s Disease.
Find out more at her personal site below.
Emma Kyriacou is a real-life ninja. Taking up Karate to help fight her Parkinson’s Disease, she’s co-founder of Good Moves and is passionate about promoting exercise to improve mobility and neuroplasticity. (Is that a word? It should be.)
Find out more at her personal site below.