79. The two minutes after the night before

After blog post 78 …flipping heck



In a non-oscar way I would like to apologise for night time ramblings. Crikey oh riley could probably write a thesis or thesaurus, on all that twaddle. Meds switched off completely instantly about two minutes after posted that blog post. Crikey so it begins again, now meds not kicking in and can hardly walk, and thank goodness for predictive typing spelling thingamy. Over and flipping well out. Will be posting this in several places so ho hum…

78. Too much is not a good thing (unless it’s candyfloss)

Crickey Oh Riley – had a Eureka moment about ten minutes ago.

I shall start from the very beginning as that is a very good place to start …

(now I was going to digress and add a funny ‘apple anecdote’ … but as all fellow academics (and googlers) know the Eureka moment does not apply to the apple falling from the tree, but from the discovery of the purity of gold – duh)

  • Due to a change of arrangements I had a rare unsupervised shopping trip.  Usually someone is with me, not in an odd ‘I can’t travel alone’ way, but in a ‘woooose I am a bit worried about falling over’ way.  A bargain pair of shoes and a bargain beautiful impractical creamy floaty dreamy dress later, and I ended up in a supermarket trying to work out how I would carry everything up the hill.
  • Got a taxi home and had a supermarket tiny sandwich for lunch.
  • Then proceeded to print and check my odes for my first ‘proper’ Parkinality Poet (yes, really) performance tonight – more about that properly when I have set up the Facebook page etc.
  • This took ages and I was engrossed in it. leading to school-girl error number 1 :

ERROR 1 : forgot to take lunchtime 2.30pm medication.  Suddenly realised when I started to switch off.  I actually took it at 5pmish – two and a half hours late.  Usually I would have switched off way before then.  I think the meds possibly lasted longer because had a tiny lunch (so not a lot of food to get in way of meds absorbing), I was sitting down so not using much energy, and I was enjoying what I was doing so my brain maybe using it’s own supply of dopamine for a change ?!  Obviously this is merely a guess – PD is so flipping unpredictable and unroutineable (good new word) that it is almost as likely to be because the ‘moon is facing north east’ and ‘Gordon is a moron’.

  • Then suddenly realised had also run out of time to make tea. So Fish and Chips it would be.  No great problem there – it is lovely from my local chipper and fisher.  BUT meds didn’t kick in properly as I must have been so depleted in dopamine.  So had to walk backwards and listen to the Strokes, Reptillia quite (very) loudly, trying to navigate the steep hill, commuters and general rubbishness down to the fish and chip shop.   My lovely man appeared as if by magic and helped me with the food and helped me and encouraged me back up the hill.  Leading to school-girl error number 2 :

ERROR 2 : as meds didn’t kick in so after about half an hour took an ’emergency’ dispersible med to try and get the main drugs to kick in.  This was quite close to taking the other meds.

  • Tried to eat tea but, to be honest, was so mega excited about forthcoming evening, and so much still to do.  I went through my odes read them out to those at the table.
  • Meds still not kicking in after probably half an hour and I am now really struggling, we are late and will be late for the evening performance (of which we are part of).  So this led to school-girl error number 3.

ERROR 3 : at 7pm took next lot of meds, which bearing in mind I was very late taking my lunchtime ones and now taking another load of medication, over the period of 2 hours.

  • Meds gradually kicked in.  Taxi to the pub venue.  Negotiated timings of performance so that I could judge my medication.  Leading to school-girl error number 4 :

ERROR 4 : at 9pm took another single levodopa,  All kicked in.

  • I hadn’t eaten dinner, had had no breakfast, and only a tiny lunchtime sandwich, that combined with the ton of meds meant probably the majority of their dopamine dollop got to my brain.
  • I performed at 9.45pm, twas good fun and people seemed to like my poems.
  • I was due to perform again about 11.30pm,  so I wanted to be tip top, even though I had been all evening, I didn’t want to chance becoming twaddle.  Leading to school girl error number 5.

ERROR 5 : I took another emergency dispersible to keep me going.  Performed again, twas very exciting and I was very happy (again producing more dopamine in my system, this time real dopamine.

  • Booked a taxi and travelled home.  Read odes to poor taxi driver who was very patient.
  • Got back home, didn’t eat. but had a bedtime CR medication around 1am..  School girl error number 6.

ERROR 6 : took the CR even though I didn’t appear to need it.


I was totally – I believe the word is not appropriate for parental/child conversation ;)’.  I was hyper awake, not tired at all.

  • Went to bed and was totally awake.  Crikey wrote a huge long ode about Ukuleles at about 3am as you do.  Spoke to PD people awake on messenger.  In the end had 10 fishfingers, ketchup and tiny roll.  Could be a school- girl GOLD STAR.

GOLD STAR 1 : The idea, (which I only thought of after I had cooked and eaten half of them), is that the protein in the fish fingers which interferes with the dopamine absorption from my meds, is used to my advantage.  What I mean is that instead of eating TEN fish fingers and fingers crossing that they don’t interfere with the dopamine absorption.  I now wanted them to interfere – I needed to use up some of that dopamine.


So as always I am not a medical professional this is all guess work, but the facts are as follows :

  • Had tiny lunch
  • Forgot to eat dinner
  • Didn’t drink much liquid and it was very hot so probably dehydrated
  • Took lunchtime meds far too late, so they bunched up with other meds.
  • I was happy and positive so probably producing some of my own natural dopamine.
  • I really didn’t want to have PD interfere with my evening, sooooo I probably took too many meds.
  • Fish Fingers do contain protein and protein does slow/reduce dopamine absorption.

It is now 5.44am and still no sleeeeep.  Off to neurologist today, that should be interesting …

I really don’t need any meds yet either – flaming heck.

toodle twaddle



77. Woe is me …

Just amended this slightly, if you read this earlier, I have made a slight alteration.  I am not talking about Carers who do a brilliant job.  I am talking about the word ‘carer’.

Diseassociation, dise(ase)association : to suffer as a result of someone close having a sodding disease

Crikey what on earth am I thinking of. Anyone would think I’m the only one in the world. I have a disease which affects my life and I’m actually shouting about it.

Everyone has something going on. Most people keep things to themselves. I just tell everybody. Look at me I’m ill.

What about everyone else. This thing affects everyone as a wise(ish) man once said ‘there is more than one victim’

I’ve got it
You won’t get it
I’ve got it
He won’t get it You won’t get it
It’s not contagious

Anxiety stress worry sleepless nights worry

Roles change
I won’t even try to speak on other people’s behalf
And it’s even more indulgent to say. ‘Okay yah really sorry but can you write about how MY disease affects you’

The person with the disease gets leaflets thrown at them about every kind of support, exercise, diet and some hocus pocus stuff

Those in the supporting role need someone too … there is support out there …

Quite often called ‘carers’ … an emotive word.   I will try not to get controversial but – when does a, son for example become a ‘carer’ if their father has PD?  Aren’t they still a son who looks after their father.  The word ‘carer’ I think conjures up someone in uniform from an outside agency.  A son is presumably not meant to swap outfits- in jeans and t shirt as a son, pulling on a monogrammed tabard as ‘carer’?

Difficult one, almost impossible to write about, so I will stop there.

Well maybe a bit more … apparently the word ‘carer’ is used on official forms.  So yes, if a son ( for example)  cares for his father, despite the fact that he is a son, his job is in effect as his dads ‘carer’.  So he can apply for all sorts of help and support – speak to Parkinson’s UK for advice, or your GP or Citizens Advice.

NB If you are a carer and son/daughter for your parent who has PD, you do not pull rank, you can still be told to sit on the stairs by your father for nose picking at the dinner table.

So in a nutshell – PD affects not just the person with PD, but everyone surrounding them.

Flipping heck

76. Switching Off

I not only wash my laundry in public, I also tumble dry, mangle, iron, fold and put away as well.. Crickey if you are thinking flip another disease blog – when is she going to talk about parking? Then you are mistaken – this is not about the Reality of Parking Positively.

Actually if after 18 months and a trillion billion words you still held out hope that the parking blogs would start soon – then I think you should go to the doctors anyway. Having alienated probably 3 of my audience, I will continue.

BTW i obviously don’t mangle, iron fold and put away ,,, I am very privileged at having a Floordrobe (read that somewhere – I didn’t invent the word, apologies to whoever did that I can’t credit you)

Flaming heck – switching off is twaddle. I must admit I don’t always deal with it calmly. New leaf today in trying to deal with switching off in a grown up manner.

The rug gets pulled away by a super magician quicker and quicker every time … the meds just switch off with no warning.

no swearing, crying, stomping, huffing and generally getting into a stew, or trying to go out.

I will do meditation, breath calmly – nope brain racing, but body won’t.

Okay will do sitting down things – good idea.  Tidy table, hands won’t work properly fingers won’t sort things … flip.

Okay will write a list of things to do when tip top -nope pen holding out of the question.

Okay I’ll ‘go over there’ (probably five steps) and do something interesting in that dusty corner nope feet won’t move.

Typing is very slow and very laborious – i have tried dictation software but voice goes quiet and twaddleee and so the words typed from my dictation are not readable – although when I start swearing to myself about the dictation software not typing properly it picks up the swear words and types correctly – flipperty flop.

So i just have to sit and wait – have my head phones on waiting unless Patience begins with an L then it is not my middle name.

Ho humdiddley dee. This is rubbish


75. Invisible Symptoms – Impossible to Understand

In a nutshell :
If you haven’t got it you won’t get it
If you haven’t got it you can’t possibly know
What it feels like to be me

Everyone can ‘see motor symptoms coming’, ‘non motor symptoms are invisible’ they will suddenly jump out with no warning.

Most of the time you will be able to detect a ‘motor symptom’.  So tremor, slow walking etc etc.   You will be able to metaphorically duck.

If my tremor hits you round the face, that can be thought through rationally. My hand tremors due to PD and it went a bit ‘doollally’ and hit you round the face. I can then say sorry, make a little joke about it and move on.

If my non motor symptoms kick off because of their invisibility, ducking is not an option.  You won’t know I have a non motor symptom kicking off  until I have said the wrong thing or shown an odd emotion or cried or acted out of context or out of character.

With PD you learn what is important … and in certain parts of my day I am so happy, but in certain parts I feel so down. My days are compartmentalised by PD symptoms, drugs and so much more.

‘I try so so hard to be normal’ : To someone with PD they will understand what I mean

‘PD changed my whole perspective on life’

‘Life does not end with a PD diagnosis, it just gets more compicated’

‘Since PD I seem to spend my whole time explaining’

Explaining to Nurses and Consultants PD feelings and symptoms. Medication responses and side affects                                                                                      Everyone reacts differently to drugs, and differently each day
Why it is unpredictable
Why I am fine one minute and can’t do anything the next. Literally anything
Why some days are written off
Why some days are written off, then suddenly everything starts working and I am top of the world.

Why some days/moments/hours I am tip top.

Apathy, lack of motivation – it really is unexplainable unless you have these with PD.

It is important to be open and honest with your Neurologist- a tweak of medication can make a huge difference.  However, if a change of med gets rid of the motor physical symptoms but then intensifies the non motor symptoms, the neurologist needs to know.  He/She can test the motor symptoms to a certain extent.  Unless your appointments always seem to be at a time when meds are working (mine do, my Neurologist has never seen me Off).   The neurologist relies on you describing and not under playing or over exaggerating the symptoms, that is both motor and non motor.

‘Why I try and raise awareness’.  To be honest raising awareness without moaning is really difficult. Awareness I think is important for fellow people with PD – awareness that they are not alone.

I write this blog honestly. Some posts may seem a bit vague and vacant, sometimes I try and say things and it all comes out wrong. That is because I don’t want to moan, I pride myself in information by stealth, with humour – sometimes I just want to say it how it is, but I really really don’t want sympathy.

Someone is diagnosed with PD every minute of every day.
After that PD rules my life every minute of every day. My life revolves around tablets, keeping meds topped up so that I can live my life.

Motor symptoms – physicality of PD
On days it is kicking off on the outside (motor symptoms), I feel I am holding friends back, I feel disabled and different to them. Everyone is lovely when they see someone struggling with a walking stick, and offers help. People can relate to this, they feels they know what it is like to not be able to walk (they don’t and I hope they never will). When they say, look it is just over there, when you are struggling to walk – when I cannot walk I cannot walk, but then suddenly I can.

Non Motor Symptoms
People don’t see them – they don’t understand and can’t possibly.

How does it feel to feel so claustrophobic you can’t stand even a hand on your shoulder
How does it feel to walk down the same hill to find the perspective has changed and you feel like you are falling
How does it mean for the meds not to work at all some days
What does it mean to be paranoid
What does it mean to be so up and down

How does it feel to shout at those closest to you … when you don’t mean it and don’t know why you do it.

and many more …

Obviously there are a couple of odes :

I am two people or is that three
Or half a dozen, just call me ‘we’
The one that you see, is actually me
Out and about, with and without PD

There’s me switched on when meds working well
I can almost forget about being unwell
I say ‘almost’ as it’s always there
Bubbling away, PD doesn’t really care

I do everything I can and wear myself out
I do things I enjoy, you would too I don’t doubt
People probably think ‘hark at you;
With your disease, look at the things that you do

Karaoke, dance, and staying up late
Drinking gin, laughing and chatting with mates
I do things now I don’t hang about
As I know PD will stop me in my tracks, and give me a clout


If the bottom is rock, then I have further to go
I don’t understand and I really don’t know
What to do about this disease, which drives me mad
And the medication, 33 tablets is quite bad
Or should I say ‘ain’t arf bad’ wth a jaunty smile
And a click of the heels, everything was good for a while

My brain is addled, sometimes it’s blocked
I don’t know why, I have thought about it a lot
Sometimes my mind is clear – I have clarity as well
Sometimes I forget for a few minutes about being unwell
Then a few symptoms start to rise
And my enthusiasm and happiness begin their demise
Invisible symptoms are the worst
Why why can’t people understand ….

The night is the worst, it is so bad
Sometimes I feel like I am going mad
Shuffling oddly, and then I’ll probably stop
As more and more depleted my medication got
Then I drop off to sleep with no warning during the day
And ramble and type words which I do not say
All of these words are not said with thought
I upset people when I say more than i ought
I really don’t know, I really can’t say
I just want this feeling to go away

If you have 5 minutes, Kathleen Kiddo is a person with PD, and is an amazing writer and is incredibly eloquent. Find her on Facebook – she takes words out my mouth and says them so much better.

Re-reading this I don’t know whether I should post or not … I will and hope it makes sense …