What's in a name?📛
Where Emma ponders the naming of things
Hello, lovelies, as ever thank you for all your support!
The talented Kuhan from Two Parkies in a Pod posted this poster on Twitter that he had made:
Frankly, I much prefer his take. It reflects my experience and I feel it is more compassionate and inclusive.1
I am aware it isn’t the job of science or the medical profession to make us feel better but isn’t there a point where the experience needs to be part of the language?
I wonder, because Parkinson’s is basically a mystery and no one has any clue what the hell it’s all about, if jargonistic blabber hides the shortfall. This is understandable. Why would you be concrete about something if it’s liable to change? No good for research, science or reputation. The problem is this lack of surefootedness among the experts leads to empathetic diarrhoea. In an effort not to build false expectations, they create fear and a sense of detachment so far gone it orbits off Jupiter.
As an example; you might have been told at diagnosis you will get a good 5-10 years before well you know forget life, the universe and everything in it.
For starters that is utter bollox - not just for Parkinson’s but for pretty much every degenerative disease.
But the reason I think we are told that is in the minds of the medical or science professional it is highly probable there will be either a) a cure b) improved medicine c) the patient will get hit by a bus.
But five years is a couple of kilos around the waist, more grey hairs, a birth, a marriage, a move, a career change and so much more. I don’t want to imagine I might be too ill to be part of these things, or worst my illness interfere with them. Life marches on. We want to be in it, not on the outside looking in from our ivory tower of chronic illness.
The descriptions of our disease could be improved without anyone losing face. I like being described in these terms, as it implies there is still a human in the mix.
I have Parkinson's...a brain disease that over time causes the mind and body to slow, impacting the ability to move, walk, talk, eat, sleep, think and feel. A mix of symptoms affects everyone differently and where age, gender and ethnicity is likely to impact that mix. Cause is unknown.
There is also a move to rename Parkinson’s Disease. Not to negate James Parkinson who documented it as a disease, without that we would potentially be at risk of being accused of witchcraft.2
But there is a general feeling that it needs to be re-cast into something more up-to-date and genuinely reflective of the multifaceted nature of the condition.
I think we should start coming up with names. Join in the poll 🤣
with love
Emma xx
P.S. Many (and I mean many, haven’t you lives?! 😜) of you have emailed me to suggest topics you would like me to cover. I am delighted to oblige. There are A LOT asking about parenting and domestic-y type things so watch out for a special series on this. Thank you! I couldn’t do this without you xxx
Talking of inclusive check out this brilliant advert about Parkinson’s in young people:
Parkinson's is misunderstood in many areas of Uganda. Â It is thought to be a curse brought on by WITCHCRAFT. Â People with PD are considered untouchable and that the disease is contagious. Â Outcasts in society, no one wants to be around them...and the tell-tale tremors give away the condition. Read more here.