Category: THE BLOG

WARNING : IN THIS BLOG I QUITE BLATANTLY ‘MISLAY THE PLOT’

Flipping heck, flipping heck, flipping heck

I think that says it all.

Even though I am fifty zillion words into this blog, I do remember my roots (no jokes about the hair please).  In the beginning, I was not ‘the word’.  However, I did promise that this blog would be many things but not a Whodunnit.  Anyone who whispered that the blog could be described as : odd, niche, artisan, smelly, waffley – off with their heads (obvs only dermatological ones)

I have OsteoArthuritius in my right hip and I am distinctly, rip roaringly, unchuffed.  I am so unchuffed I have decided to miss-spell it on purpose – see that ‘sussed it out’.  Hear ye I will hence forth in this post call Parkinson’s, Plimpigtons, that will really get up the nose of the word processor – ‘ner sussed you out too’.

(An apology, this is all degenerating into rubbish nonsensical twaddle ..)

The ode about pain, a lot of the problems in the night with waking, is due to the pain in my right hip I had ignored it for a long time as it was ‘just the Plimpigtons’ causing problems.  About a month ago a humungous pain in my hip made my eyes water, (and I am quite butch (in a floaty feminine way).

On the case as usual, I went to see a Hip Guy (I will treat my audience wth some intelligence and won’t insult you by making the obvious jokes)

X ray showed severe degeneration, bone on bone.

I have inadvertently got another disease .  OsteoArthuritius has very skilfully elbowed it’s way into my blog.  Cheeky blighter.  Don’t worry it is not going to take the limelight away from the main event.

Ho hum Diddley dee I must be over 173 with two ‘older person’ conditions – both chronic, both incurable, both (apparently) manageable.

So I may mention, moan, or just inform you of this new ‘condition with which I live’ from time to time.

Hip replacement on the cards …

LES

Over and out

PS – this is a massive PS, but I am making it less massive by putting it as a PS in the tiniest print I can manage – this new condition means I have to stop tennis.  I know.

Lists should be on fridges, in bags, and in Santa’s sack
Not in buckets, I believe there is something wrong with that
Why write a list of things to do before you die?
Are the things on the list so important?   If so, why?

Climbing Everest, walking on water, tea with the Queen.                                        Are these on your bucket list?  Are they really in your dreams?
Do you really think you will enjoy the adrenalin hit?
A quick thrill – each one over as quick as a wink

Making a cup of tea, when you want one                                                                       Up early, walking, admiring the rising sun
Going to meet your guy, without a second thought
Shopping with your friend, buying more than you ought

Eating steak, without worrying about your meds
In fact,  doing anything, without planning ahead
My list is not in a bucket, as mine is full of holes
(I am afraid for this line to rhyme it is going to end in ‘moles’)

If I sound as if i am preaching, then I really am not
Or maybe I am.  But actually I don’t care a jot
What is on your list, or what you keep it in
I don’t mean to be rude, but I would file it in the bin

You can still have adrenaline rushes, if that’s what you need
But don’t forget the other stuff, the things that help us breath
The tiny things which happen – don’t let them float away
Pause, think, listen, enjoy and appreciate each day

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 …

**************************

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 ….

• 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

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

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

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

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

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.

***********

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