3. The moment, possibly 11 people have been waiting for …

Drum and trumpets required as I announce and boast about my recent activities.

Okay I have my stro and he is about to do a fab drum roll – you will obviously have to take my word for this as i haven’t installed listenability to this blog yet.

Drrrrr uuuuuummmmm rooooollllll

And the same applies to the blowing of my trumpet ..

Noise of a trumpet noise of a trumpet la la la

It is out … don’t panic … I am not referring to the lesser spotted sabre toothed zebra …. but my book.

My book is out … https://www.troubador.co.uk/bookshop/poetry-short-stories-and-plays/the-parkinality-poetry-book/

Crikey oh riley itus …. yep I have only gone and done it … available direct from the publishers on the link above ….

Whhoperdeedooodah

96. Indelazisive

Okay if you want to skip my waffle about being indecisively lazy … then don’t waste your time reading this ridiculous post … pop along to the Parkinality Poet section for news as to why this blog has been rather sparse recently …

Of course if you have more time than sense read on (don’t say I didn’t warn you)

Complete twaddle alert ….

Apologies … another new word …. Indelazcisive

INDE laz(y) CISIVE

I am being indecisively lazy – so not lazy par ce (no idea if that is spelt correctly or the correct usage), more indecisive.

Just counted up and 1 2 3 4 5 6 7 8 9 10 11 yes that is eleven unfinished draft blog posts hiding ‘behind the wobbly stage sets’- maybe I should just post them as they are – maybe I will maybe I won’t … ooh adding some excitement to this stale blog.

I am allowed to be harsh, my blogging has been lazy which means the blog is stale, like a ‘bread envelope’ (if I have to explain it it isn’t funny …so to the four people who don’t understand it …. actually it’s so obvious I don’t feel I need to ….)

Oh just go and look at the Parkinality Poet section to find out what is going on …. go on shoo shoo …

95. 1.55am

Not all as it seems 

Head up 

Chin up

Put on your smile

Pretend to be well

For a short while 

….

Coat on 

Shoes on

In your dreams

That’s not how it happens

All is not what it seems

….

Falling through the door

Having a long drink

Hitting the dance floor

It’s not what you think

….

Strutting my stuff

With a wink and a smile

I’ll never have enough

I’ll go the extra mile

….

Dance til I can’t

I get into the groove

Dance til I can’t

I love to move

….

Not a drop of drink

Has passed my lips

Don’t look like that

Its not what you think

….

Fall out the door

Stagger up the street

Smile at everyone

That I meet

….

Get to the house

Get through the door

I have reached the end

I can’t take any more

….

Just in time?

Just don’t know?

I feel pd start in my toe

Moves into my foot and my leg

Please no more, I try not to beg

2. At long last news from the bic

The Parkinality Poet has been quiet on here, but noisey out there.

Preparing and practising the poems and odes.

Thank you to those who purchased the limited edition practise charittee edition of some of the poems and apologies to those who missed out.

I printed 100 copies simply on paper with a simple purple cover and sold out! I donated all of the money from the sales, divided between Parkinson’s UK and The Cure Parkinsons Trust.

But fear ye not … those poems (all mostly revised and remodelled) appear in my proper official grown up book along with a lot more.

In fact there are i think 52 poems in the book.

Currently being printed it will be available to order in a couple of months so wts.

94. 0,002 : ‘These Three Words’

Parkinson’s Awareness 2019 : A Picture Paints a Thousand Words.

Number 0,002

I may have mentioned the play which the Wise-ish Man and I entered into the local play write competition.

We won the heat and were runner up in the final.
Well, drum roll – it was filmed and here it is.

It is about being diagnosed with early on-set Parkinson’s and the fact that there is ‘more than one victim’. This affects the whole family and beyond.


This is part of a bigger project … Parkinson’s The Musical is written and ready to take it’s next step towards Broadway and beyond. Watch this space.

https://www.youtube.com/watch?v=JPKfPdjr-v8

93. A Picture Paints a Thousand Words

Okay a day late with the first day of awareness month ,,, but you only know that because I have told you, so erase that from your mind. I could delete that but I’d rather write a sentence explaining I could delete it, rather than actually deleting it. For all you knew Awareness month might actually start on the 2nd April …

That last paragraph (sorry I mean first paragraph) was an example of waffle and letter wastage … I will be going for quality not quantity for this years Awarenessing. So rather than thousands of words I plan to post pictures both static and moving.

So I can’t promise no waffle – after all my cunning plan is to be so irritating and over awareness so much, that ‘they’ direct resources and expertise to find a cure for everyone living with Parkinson’s, just to shut me up.

A picture paints a thousand words 0,001, now not sure how to post a picture on my blog … oh crikey give me a minute or two. Okay managed it … not exactly exciting … but I didn’t want to peak too early …

92. Tomorrow is ….

Well that’s not a good start, already confused. Tomorrow is … could be anything on any day.

For the purposes of this … tomorrow is Monday 1 April … tomorrow is the first day of Parkinson’s Awareness Week.

So lots planned….

A you tube clip of me called ‘The Big Switch Off (and on again)’ which will be attached to my newspaper column on their website.- will post a link when that goes live.

These Three Words – the Play on film will be posted over the next month.

Attending the Parkinson’s Eve conference about women and PD

Publishing poetry book

Decorating window of newspaper for awareness of support group.

And. many more folks …

91. When will I learn ?

Firstly this is a retorical question obviously …. as ‘never’ is the answer which springs to mind.

Okay just realised you probably have no idea what I am talking about. ‘Learn what’ ?

Btw why can I hear seagulls? That is not the question you need to worry yourselves about.

The question is when will I learn that pd doesn’t just disappear. That I should pace myself. Woke up tip top totally nothing wrong with me.

Washing on – both crockery and clothes machines. Zipperdeedoodahing about. Pd was obviously distracted momentarily but is now flipping well back on my case.

Note to self …. clean crockery and washing clothes are not a priority in the morning.

Ho hum …. let the robotic breakfast dance begin.

90. I’m in hospital get me out of here…

Imagine being in a room with someone who :

Cries a lot, laughs a lot, moans a lot, talks a lot. Has raging dyskinesia (continuous movement) one minute, then frozen and sobbing the next, then ordinary the next. Who also has over one hundred poems she needs to practise.

But unlike the tv show, you can’t shout ‘I’m in hospital get me out of here).

I have just been on a two centre hospital trip, cricky the people on the ward deserve something more than a laminated certificate. They were party to 24 hour Parkinson’s.

Now, other people would have drawn the curtains round and tried to hide their feelings/symptoms. I am afraid, selfishly, that is not me.

Rather than paragraphing the past few hospital stays, a bullet list might be easier on the eye :

  • I don’t know if anyone noticed me singing Wham Rap one morning to get out of bed.
  • Antibiotics and the like have messed with my stomach and interfered with the absorption of the meds – so symptoms kicking off more than usual.
  • Use it or lose it. When switched ‘on’ I was walking the corridors to get my walking practise in.
  • My paranoid fretful nights are difficult at home, but in hospital they are awful awful awful. The staff were amazing. When I couldn’t sleep and I couldn’t lie down, I wandered up and down the corridor (trying very hard not to disturb everyone).
  • The staff at the hospital without exception knew that I needed my medication with me at all times so that I could self medicate. A few forms to fill in and it was organised. The first nurse I saw said ‘get it on time’ which is the tagline for getting the medication on time.
  • First day or so I felt guilty for pressing the call button to ask for something to be moved nearer when switched off. However I quickly learnt it was better to ask for a few minutes help to get organised than to try and do it myself and knock things over etc.

I wasn’t in for a Parkinson’s problem, but the PD dominated. It really has taken over, everything I say and everything I do. It was difficult for the staff I am sure to ignore the PD outer. I had to keep reminding myself that wasn’t was I was in for …

So thank you thank you to the staff and fellow roomies, all had the patience of a patient thing.

In the words of a political robot person … I (hope I) won’t be back (in hospital)