Apparently there has been internal debate going on for years about
the use of word disease with Parkinsons. I understand some peoples
stance against the word disease. I have got an open mind on this
one. What do you think and what would you change it to.
Since P is a collection of signs and symptoms which vary from person to person, and which cannot be transferred like flu etc, it should be known formally as "Parkinson's Syndrome". The word "disease" carries the implication that the condition referred to is dirty and/or infectious.
I just thought to look up the dictionary definitions:
Disease - unhealthy condition of body, plant etc; illness, sickness . . . abnormal, disordered.
Syndrome - group of concurrent symptoms of disease.
Oh, dear - a rose by any other name??!!
I retire, defeated . . .
Snap! Just did the same.
The OED says: "a disorder of structure or function in a human, animal, or plant, especially one that produces specific symptoms."
No suggestion of it being contagious, although I agree those unfamiliar with PD often worry that it might be.
The newsreader on Sky News just referred to Muhammad Ali suffering from "Parkinson's Syndrome". Hooray!
The OED definition of "syndrome" is:
"A group of symptoms which consistently occur together."
Sounds spot-on to me.
At conference with Professor Jenner a expert on PARKINSONS Describe it as a syndrome and I am quite happy to go along with that.
So how do we get the organisation to change its name to the "PARKINSONS SYNDROME SOCIETY" ?????
They want do a rebranding exercise at this moment. So why not start
with the name and they would had to change the paper titles any way
I guess at the end of the day, it doesn't make much difference whether we call it a disease, a condition, a syndrome,an affliction a disability or whatever, we're still stuck with it for the rest of our days. I'd tell you what I call it from time to time but all you'd get is a bunch of asterisks!
A rose by any other name............
If it's a wide range of symptoms all initially caused by a single deficiency (loss of one's natural dopamine) it's not a disease as most people would understand the word.
In modern use "disease" suggests an external agency (like a virus) has invaded the body, and that the sufferer may pass it on to others.
It also conjures up the idea of a diseased mind, strengthening the outsider's view (when confronted with a blank Parkinsonian face and slow responses) that the patient is now mentally deficient and unable to think or communicate rationally.
I think the word "Parkinson's" itself is now so ingrained in people's minds with impressions of mental defectiveness that both it AND "Disease" have got to go. Remember how Downs Syndrome sufferers used to be called Mongols, and ridiculed?
Why not Dopamine Deficiency Syndrome (DDS) or just Dopamine Deficiency (DD), with sufferers merely being referred to as being Dopamine Deficient (DD again)?
Very well said, Cosmic - you have my vote.
Cosmic I must take you task about the degrading term given to Down
sufferers had nothing to with syndrome only facial expression and
labelled by school children who were totally ignorant of the condition. That has given me a idea "The Parkinson Condition Society" or something similar.
Good afternoon all.
My sincere apologies if I caused any offence by referring (by way of example) to the proactive exercise to remove from use the hideous word previously used to refer to Down's sufferers. Once that word disappeared those sufferers regained much public understanding and respect, and I was suggesting that a similar "re-branding" would be equally beneficial to the PD community.
The old word for our Down's friends was not just a kids' word, but the word used (in decades gone by) by the whole population, and indeed in print. I was born in 1950, and I recall people of all ages using it, and the general assumption that these folk were just mentally retarded.
The current Oxford English Dictionary explains:
"The term mongol was adopted in the late 19th century to refer to a person suffering from Down’s syndrome, owing to the similarity of some of the physical symptoms of the disorder with the normal facial characteristics of East Asian people. In modern English, this use is now unacceptable and considered offensive; it has therefore mostly been replaced by the term Down’s syndrome."
My suggestion is that as soon as Joe Public hears the "Parkinson" word he automatically brings up in his mind's eye a picture of someone wobbly and shaky, with some kind of mental deficiency. We therefore need to remove James Parkinson's name and of course the inappropriate "disease", and come up with something totally new.
Personally I'm happy with "Syndrome", as the public don't automatically think negatively as soon as they hear it, and its OED definition is spot-on. I therefore favour either the simple and straightforward "Dopamine Deficiency" or "Dopamine Deficiency Syndrome".
The various stages can then be indicated by prefixes, such as "Advanced Dopamine Deficiency", "Mild Dopamine Deficiency" or "Early-onset Dopamine Deficiency".
Your last post made me chuckle. I'll second that - we also call it all sorts of unrepeatable words in our house too!! Thanks for making me laugh as I'm having a bad day today
Dear all I read with interest re Parkinson,s Disease as a fellow
traveller living with P.D.for a few years now.. I have found it odd that our conditions/symptoms are referred to as a disease since they are neither ..infectious or contagious...why disease ??
I suppose as the body is described as not being at ease hence ..disease play on words
regards to everyone..don,t give in.. fight P.D. above all else keep a positive mental attitude
You all agree that changing name is money well spent?
Will it help us really,if called something else?
sorry got loads I want to say but not able to sit and concentrate on a long post at the moment,
If it changes the public perception of us, so they don't think we're all cretinous, and gives us a higher profile, that can't be bad.
[Its been talked about for years to take out disease, not change the
complete name. I have spent the last two years teaching the general public in my area how PD AFFECTS MY LIFE. But start all over again explaining to people what this new name term means, horrifies me. The charitable collections would go down because people would not
recognise us. Leave Parkinson in title please.