70. Severely Un-Stoic

NO EMOJIS SYMPATHY HEADTILTING

Parkinsons’s Awareness Month.  An interesting concept.  I have been faced with this conundrum numerous times whilst preparing for the month.

I have been posting a lot and dressing twaddle up in ‘odes’.

Actually I am going to say how I feel … without a fancy dress outfit over the top …

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Stoic is a new word in my armour.  Not one that I made up, I over-read it in a Parkinson’s Awareness blog.

‘A person who can endure pain or hardship without showing their feelings or complaining’

Well I haven’t been this.  I have been truly un-stoic.

I am afraid my PD gets a constant voice over.  Talking through the pain, swearing etc.  I should point out this is not a voice over in my had, it is an actual out loud broadcast a la ‘spillage in aisle 3’.

I am on constant broadcast at the moment.  Unable to cope with the changes in this sodding condition.

  • When meds are on I am literally very well .   The look on people’s faces of one of complete shock that I should suggest I have pd.
  • I find myself over insisting … for some reason wanting, not sympathy, but a bit of understanding,
  • When meds switch off it is getting faster, I have no warning, 2 or 3 times a day.
  • I can literally just about get about by putting my hands on the walls and sort of throwing myself from piece of furniture to wall etc etc to get about.  My legs lagging behind my top half.
  • I get dyskinesia in my left arm.  It is starting to kick off, I have just taken meds and I get a bad tremor in my left arm as they are kicking in.
  • The floor is a flipping assault course, I can’t pick things up, as can’t bend to floor at the moment.
  • I am looking at the table and wanting to tidy and clear but I can’t
  • Pre PD it would be a 5 minute job, now it seems unsumountable at the moment..
  • I also get severe rigidity and dystonia in my leg and arm at night … ho hum

I also swear a lot – fiddlleysticks is the preferred term.

I usually attempt to inform by stealth, by dressing pd up in a few silly jokes and the odd ode.

Sometimes though ….

 

 

69. A ‘Night time’ Ode

  • I’m becoming tiny, really rather small
  • Like a little mouse, hardly there at all.
  • Voice getting quieter,  quiet and weak
  • Often only managing, a tiny little squeak
  • Strides becoming shorter, feet drag the floor
  • Using all my strength, try to reach the door
  • Place hands along the wall, feeling the way
  • Body moves, feet don’t, please don’t fall I say
  • Slip and slide, gradually I stumble
  • Just wanting to move, I try and I mumble.
  • I lean, I lunge; try and move away
  • Making any progress? Impossible today
  • All of this palarva for a cup of tea
  • Hoping there’s a hob nob  in the tin for me
  • I stop and think, do I really need a cup of tea
  • Is I really worth it? As i sink to my knees
  • When will my meds kick in, god only knows
  • As the mouse scuttles away on its tiny little toes

 

  • What shall I be when I grow up
  • I think I will make something up
  • A Squirmmeister, a Fruit-twister, a neolithic mime
  • Crickey, you just caught me trying to use up time
  • It’s 0313 in the morn, not time to get up yet
  • Crawling the walls, no sleep yet
  • Wishing I could sleep, have some rest as well
  • And actually one day, sleep through the alarm bell
  • Sorry you have woken, to another silly rhyme
  • After a good nights sleep, checking in at breakfast time
  • Only to see another, nighttime post from me
  • Waffling about insomnia, at half past three

 

68. The ‘ave a rest Ode

If I am calm, enjoying cake and cup of tea
Sitting and smiling, then leave me be
But, if you see me, being a silly moo
Whilst out and about, here’s what to do

If I am trying to dance, trying to run
Or trying to have any ‘moving’ fun
Then please, give me a hard staring look
Which says, please stop, and read book

The new ‘thing’ is pain, it is driving me mad
To add to the PD, it is really quite bad
The dystonia is cramping, and twisting as well
I’m sorry, if I am making you feel unwell

Again, you may see me as right as rain
Blink, and I’ll be debilitated again
One minute ‘on’, the next I am ‘off’
Flaming heck, I have had enuff

I need to spend longer, having a sleep
But to slow down, is quite a big leap
Definitely no head tilts, you know that by now
I must rest, and stop being a silly cow

67. Global Parkinson’s Day, Weds 11 April 2018

Global Parkinson’s Day, yes that’s Global, and no blog post.  It was yesterday Wednesday 11 April 2018.

Now I feel like the worst ‘Blog Parent’ ever.

A bit like not have any cakes for packed lunch and drawing a picture of one instead, colouring it in, cutting it out and putting it in the box as a replacement (yes, really).

Using frozen cooked cocktail sausages as a ‘cold pack type thing’ with a picnic and them still being frozen at lunchtime and calling them ‘sausage pops’ as a new delicacy (yes, really).

Ho hum.

Well I was busy yesterday, trying to continue to keep all the balls in the air(obviously the blog was dropped – apologies).

Awareness was top of my list so …

Window display at newspaper, with cupcake culinary payment.

Kept Parkinality facebook page going with some links/posts.

Went to The Cure Parkinson’s Trust lecture in London (thank you to everyone who helped me when I basically ‘went pear shaped’, especially Helen, more about that in a blog post – promise)

So, like a nervous parent, I am going to give you a little freedom, and say go forth  … if you look at the postings I made on Global Day :

You Tube, Parkinality – a you tube channel with a couple of awareness videos

EPDA (European Parkinson Disease Association) you will find an interview with me and a link to this blog.

Subscribe/read to the Bishop’s Stortford Independent and you will be able to read my fortnightly column

Watch the #UniteForParkinson’s Awareness video released yesterday.

If you are on Facebook, look up and like/follow Parkinality page to receive updates.

I trust you will forgive this blip-ette…

Maybe I will treat you to a slap up meal of : Two all beef patties, special sauce, lettuce, cheese, pickles and onions, all in a sesame seed bun.

Onwards with a smile …

Les soon

 

 

 

66. The ‘I absolutely definitely am ill’ Ode

Waking each day, with a bout of flu
Aching, stiff limbs, no sleep too
Waking each day, with chicken pox
Sweaty, lethargic, without the spots
Waking each day, with tendonitis
Hip pain, and everywhere elseitus

Doctor Flanrinsto – is not amused
Listing your ailments – he is confused

Shaky hand, shuffling walk
The Doctor thinks, you like to talk
A mystery, so much wrong with you
When, you are only 42

I was told, I am not ill
So why, give me a pill
I was told, I am not ill
To be honest, I feel ill
I was told, I am not ill
By a person, who is not ill

‘I am not ill, I have a condition which needs to be managed’
Flaming heck – well, if this is not ill, I am severely damaged

by Janet Bric-a-Brac

An apple a day and all that nonsense

Keep Darnsing

Instructions :

Put this album on your turntable, whilst you amuse yourself with disease odes.

Look up and listen on Spotify or I Tunes : ‘Affinity Formation’. ‘Long Hard Road’.

LES

 

65. The ‘I’ll have to find some way of naming these odes properly’ Ode

The mornings were the worst, she, already knew that
The afternoons were the worst, she already knew that
The evenings were the worst, she already knew that
The nights were the worst. she already knew that

How should I begin this, I don’t rightly know
Four suggestions, one line, now let’s go
Rhyming with ‘that’, seems to be key
A bit of a boring word, but I will work with it and see
Which line shall I choose, does it matter to me
Which time of day, is most difficult for me?

To be honest, it will change from day to day
Every hour is different, I have to say
I can do the same thing, eat the same food
With a different result, now I’m about to be rude
And say, thank you for your advice, it is important to me
To know that you are thinking laterally

If you find the answer, please let me know
I’ll pass it onto 127,000 people that I know
All waiting for a miracle – a new brain would be great
I don’t know whether I believe in this thing called fate
The quest for a cure, is constant, you see
A cure would mean, everything to me

I am happy to be part of a team, it is my destiny
We want a cure now, we have been waiting patiently
There is more than one battle, there is more than one cause
Parkinson’s is only one part of my world
It is there bubbling away, being absurd
Under the disguise of normality, like a black bird

64. Put your feet in my (flat) shoes …

Imagine …

You are late for school pick up, needing to send an urgent parcel.  You calculate you can just about get to the Post Office, and to School in time as long as Lance from the Shove Ha’penny stall at the Fair isn’t ahead of you in the queue.

You burst through the door of the post office, only one till point open, number 6.  Lance isn’t there.  Margery from the Fair is in the queue, but you are confident she won’t have lots of ‘shrapnel’ (ask an over 60) to change up.  Margery isn’t allowed to deal with loose change since, what has become known as, the ‘refrigerator incident’.

Only one other lady, wearing a rather jaunty paisley scarf, is in the queue.  She has just one small envelope, and doesn’t appear to have a stash of eBay sales to post in her bag.

You are quietly confident you will make it to school in time.

‘Next, till number 6 please’ …  Margery moves to the till point and the queue shuffles forward.

Nearly there.  Margery only has a small pink envelope to post, so is very quick.

‘Next, till number 6 please’ … nothing, no movement at all.  The ‘jaunty scarf’  lady at the front of the queue is just standing there, it is as if she hasn’t heard, complete blank look on her face.  10 seconds, 20 seconds, 30 seconds pass – still she doesn’t move.  Flipping heck.

40 seconds, 1 minute, 80 seconds … crickey – these seconds are getting longer.

Okay, this is serious.  You don’t want to make a scene by actually speaking to someone in a public place.  So, you try a special ohmmming technique to try to get the ‘jaunty scarf’ lady to move.  You concentrate really really hard on her legs.  Nothing nothing at all.

It’s as if the messages cannot go from your brain to her legs.

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PS:  This incident didn’t actually happen –  I didn’t actually try to get the ladies legs moving – I am not totally doolally.  However, I think it describes how messages to move leave my brain, but get lost enroute, not reaching their destination.

I had read about freezing, but had no idea how it would ‘feel’.

The other day an odd thing happened, I was standing about to walk across the room.  I wasn’t thinking ‘I must walk across the room’, I was just going to ‘do it’ without thinking.  It was only when I couldn’t move my legs that I realised that I wanted to walk across the room.

(Now I’ve even lost myself in my rambling … sorry please try and keep up)

I then tried to move my legs and I couldn’t.  I tried really hard, especially the ‘ohhmmmming’ technique.  But nothing.

Then I gradually managed to do some arm swinging and started marching and then star jumping and then running round the room.

Ho hum Diddley dee …. if that was freezing, the last sentence was defrosting.

PS don’t know if this was freezing, but it probably was.  My body was whispering a new symptom again ….

LES

 

 

 

 

 

63. Sunday 1 April 2018 : Day 1 of Parkinson’s Awareness Month

Awareness is Vital …
Amsinefliptof Leisoning
– if ‘they rattled a tin’ with Amsinefliptof Leisoning on the side would you put money in it?
– imagine you are a smarty clever clogs looking to research and cure something, would you pick Amsinefliptof Leisoning?
– if you wanted to do a skydive to raise money, would you pick Amsinefliptof Leisoning?
– if you had a zillion billion pounds (or £2.50), would you donate it to fund research and support into Amsinefliptof Leisoning?
– would you set up a coffee morning to reach out to people with Amsinefliptof Leisoning?
– would you offer counselling for people affected by Amsinefliptof Leisoning.
If you are aware of something, then I believe you are more likely to become involved in it.  (hang on a minute, I may be writing in riddles – how the flip can you be involved in something that you are not aware of?).
Okay, just in case you are not following my train of thought.
Amsinefliptof Leisoning – I wager that you are not aware of it.
Parkinson’s – unless you live at the bottom of the garden with the worm known as ‘wiggley woo’,  then you will be aware of it.  To be Frank for a moment, if you are reading this (which you are) then if you are not aware of Parkinson’s then I really am writing in riddles.
Surprise surprise no one at all is aware of  Amsinefliptof Leisoning because I made the word up and it doesn’t exist.   Yes, I did research the words and nothing came up in the search engine.
Back to the blog :
April 2018 is Parkinson’s Awareness Month. I make no apologies (sorry) for repeating myself on every kind of social media.
 
I believe ‘raising awareness’ encourages discussion, putting Parkinson’s on the agenda, politically, locally, and globally. Any publicity is good publicity. The worst (well, probably not the worst), is that PD sits in the corner being ignored, and sidelined.
 
The early/young onset band of people with PD, through social media, are joining together to make a noise and ‘raise awareness’ on behalf of those who actually live with PD, and those who live with someone who lives with PD (as a wise person once said ‘there is more than one victim’).
 
Everyone has a different method of raising awareness, but ultimately everyone has the same aim – to find a cure.
 
I believe that Parkinson’s needs to become a ‘fashionable disease’ – awful to say that, I know, and every disease is awful and must be cured. But, I believe the more PD is talked about, by raising awareness, the more people will be interested in raising money and directing time, money and resources into finding a cure.     
Not sure if I have mentioned that I now have a Facebook page for Parkinality, where you will get updates on my blog, but also additional daily musings and twaddle from my PD brain.
So if you are a facebooker, then it costs no money, to like/follow my parkinality page.   If you don’t want to ‘subscribe’ to my blog (which is also free), but want to keep reading, then liking the Facebook page is another option and way of keeping up to date.
Ho hum Diddley dee … busy month, to include :
Eating copious amounts of chocolate
YOPD Spotlight Boxing Day
CPT Research Lecture
PDUK Research Lecture
Local Support Group Meeting
Writing my Blog
Writing my Newspaper Column
Crickey I can’t sit here all day eating chocolate, must get on …
Toodles
LES