Please can i NOT have pd for just one day
I have always been fully aware of my failings … the PD diagnosis made me very aware of a new one …
My inability to cure Parkinson’s disease.
Now this may seem a harsh sweeping statement … but it is realistic and truthful.
Now annoying people say (I am, but I don’t) there is no such thing as ‘can’t’ …
You know what I am going to say next …If I had a go at curing PD, aged 50, with no scientific knowledge… well I can’t be bothered to type the outcome. Even the most optimistic will see this is ridiculous.
So rather than dwelling on this ‘failing’. Since the moment I was diagnosed I have been harping on about awareness.
Now over the years many people have confronted me (some quite assertively) saying what is the point of awareness. People have argued that it is a waste of time and is not actually doing anything.
Btw Another of my failings is I am not a good debater. So quite often I have tried to put forward my thoughts and reasons for awareness but the words come out all wrong and I sometimes feel a little intimidated, by someone saying ‘go on … tell me what is the point?’
Just a minute before I go on I just want to write …
Everyone has different personalities and different ways of communicating there is no right or wrong way. Equally doing nothing is also fine … the most important thing is not feeling isolated –
I reiterate I personally cannot cure PD, but …
There are a lot of companies employing very clever people who have lots of knowledge.
There are a lot of scientists out there waiting for the next ‘job’ .
There are lots of extremely wealthy organisations, and individuals who have spare cash.
There are a lot of (probably) bored politicians and eloquent public speakers just waiting for a reason to get their soapbox out.
So a quick digression …. A moment on isolation
PD is isolating with many invisible symptoms, lack of understanding, lack of empathy, it is unpredictable and debilitating. Also unlike other diseases in the whole global scheme of things not many people have it, and it is not fashionable.
So (and I may confuse you now) actually most people are aware of PD, ie they know it exists. But they are Not aware of what it actually does to a human being – after all people think it is just a tremor. Even if you are aware I live with PD, then for maybe a third of the day I Look very tip top and ‘normal’, the other two thirds I am completely debilitated. And actually unless I tell you, as I don’t have the PD calling card, a tremor, then how would people know?
Everyone is different but when my symptoms kick off, they do so without warning. The rug is literally whipped away. I cannot walk, mood dives, dexterity goes, even if I look well the invisible symptoms could be kicking off and as we don’t (yet) have ‘how we are feeling’ readouts scrolling across our foreheads – unless I tell people about the invisible symptoms they won’t know . Actually (and I am harping now) even if I do tell them after they say ‘you look very well’ that I am constipated, have apathy and chronic insomnia unless you have it, you can try, but you won’t understand – harsh but true.
Sooooo the world needs to know that worldwide thousands (exact numbers difficult to guess) of early on set (diagnosed under 50) young men and women were living with a degenerative neurological condition, adding to the older people living with PD . If pharmaceutical companies knew they could make even more money and get publicity and kudos from curing PD , and politicians had a slight sniff of the fact they might get the key to the door or enhance their political profile and popularity with the public if they were instrumental in gaining funding and pointing research to PD.
And if the world understood just how awful and debilitating PD is …. Then finding a cure would become a priority
However (this is is the time for the big awareness word) Awareness is key. And annoying phrases are actually less annoying here … from small acorns do big oaks grow, and a ripple travels a long way (well something like that)
So awareness … I’ve said I can, but what have I done. Now this is not earth shattering stuff but I hope that someone somewhere is listening . If everyone with PD makes someone aware, does something … it can be something tiny … like telling the man behind the cheese counter whilst buying edam that she has PD who knows that man’s uncle might be a neuroscientist or multi millionaire pharmaceutical investor – don’t snigger. In the same way film stars go to the toilet, neuroscientists will have uncles who work on cheese counters,
Now … I have not tied myself to anything yet, but my small micro attempt at planting and nurturing that acorn are :
And I know its not ‘the done thing’ but yes I am blowing my trumpet … I am really proud at what I have achieved … a lot of people questioned why I have put my head above above the parapet. Four people in particular have supported me throughout … and continuing my tradition of not posting pictures of my food or mentioning names … fish and chips is all i am saying ….
Writing my blog and promoting it about living with early on set pd
Writing my fortnightly column in the local paper about early onset 17,000 words, 24 columns and still going
Performing on stage with parkinsons my poetry
Me and the wiseish man giving talks to medical staff and local groups about living with PD.
Being honest about how I feel … if you don’t want to know how I am don’t ask.
Ps some people may find my writing jokey and flippant – i am not and it is not really – there is a method to my madness, – if I wrote my first blog brilliantly but it was really upsetting to read will people read more. My strapline is
Information by stealth .
A friend once said they felt disrespectful reading my blog because they laughed and it was on a serious subject , Perfect …. laugh and learn hoorah
So all of this might or might not —-
Ultimate aim get through to a scientist or investor and a cure
But as important –
let someone with PD know they are not alone
Not feel alone with this flaming disease
Waffle – no prizes for reaching the end
So there you go
Over and out
actually if you can cure pd then just do it please don’t wait politely to be asked —-
You know when its goes past being ‘acceptable’, sprints past ‘just about acceptable’, ambles past ‘this is not funny any more’ … ending up at ‘where the expletive are you you stupid expletive’ … ‘headlong into people arguing over who gets first dibs on your fluff collection. Well that’s me at the moment.
There’s no easy way to say this but …‘I am okay’
Blog 82 may have made some a a little sad and concerned. Especially if you only know me as a twinkle in a blog. If you know me in real life, then you know although a tiny bit unhinged from time to time i am okay.
20 August 2018 was the last post and it is now 18 October – flaming Nora* thats a long ole time
*Nora is not on fire be calm
List of excuses : in no particular order
- I am writing a lot of Poetry at the moment – one hundred poems and rising.
- I am performing said poems at a couple of festivals and open mics and am getting ideas above my station.
- Putting together a poetry book to sell.
- General distractional faffing
- Me and my ‘wiseish’ man have given a couple of talks about living with pd.
- I went on holiday with my wise ish man – pd came with.
- Still writing for local paper 24 columns 16,000 words and rising.
- Had full hip op recovery has been v awful.
- Disease to be experienced.
- and so on and so forth – flamingo heck and atj.
If Mr helpful administrative tech guy is reading this – I would like to put together a Parkinality website to group everything together (that’s the Capricorn in me) then I would like to creatively bring all my waffley twaddle together in a one stop shop (or one shop avoid) of all things Parkinality.,
So I was going to write something this morning in my blog about a crubbish pd morning but thought I can’t do that as I haven’t written for so long. I need to compose an excuse preamble.
So preamble done which will have to suffice as I have Marylebone to hover above,
zip er dee doo dah and atj