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 …



74. Just Diagnosed?

I realise we are a trillion billion zillion words into this tome, but I thought it worth slipping in a ‘ave you got it’ ‘just diagnosed’ page.

Firstly ‘ave you got it’ …

I lived with a lot of little symptoms, before my left arm stopping touch typing.  I was made to go to the doctors and get a referral.  All I would say is persevere, unless someone has seen PD before. You need to see the right person, as shock horror it is not just a tremor.

There used to be a sign in the doctors saying ‘do not come in with more than one condition at a time’.   Ridiculous, PD is so many seemingly unconnected symptoms.

My first symptoms, left hand intermittently stopped typing, left arm shook occasionally, left hand sometimes had difficulty twiddling a fork.  left leg had problems tap dancing (really).

Take any appointments you are offered – take them.  The more people you speak to the more information you will have to deal with this ‘thing’.

Don’t feel hassled into starting medication straight away, speak to nurse, consultant etc. Take advice.

This is directed at the newly diagnosed.  This is merely my opinion/advice of what I would say to myself in hindsight.

Every hour someone is diagnosed with Parkinson’s (the joke about being woken a 2am has already been patented by someone else 😉

If you ‘switched on’ Wednesday 11 April 2018, Global Parkinson’s Day, then crickey you must be thinking ‘wow wee Parkinson’s is the most popular, fashionable, talked about thing in the galaxy.’  ‘We’ are all over the computer.

Thursday 12 April 2018, you will be faced with the stark reality of, apart from a relatively few (in the whole scheme of things) people blogging, campaigning, reporting about PD, it is a niche disease . Especially if you happen to be young.

Be careful when you google – there are a lot of people out there who appear to be knowledgeable but may well just be a lass at home like me, and at least I admit that I know nothing and am learning all the time.

Your life has not ended, it has just got a tad more complicated.

Anyone newly diagnosed who has come across this blog may be a bit overwhelmed by the information and waffle. if you want to read from the beginning please go back and click on 2017 in archived blogs and then read if you wish.

As a wistened old sage of 50, and nearly 6 years of PD experience : a few pieces  of food for thought

Day of diagnosis, remember …
You are still the same person as yesterday, only better armed, the ‘thing’ which has been worrying you has name, someone believed you – phew’
Don’t panic
Don’t google

It is not terminal (you die with it, not of it)

There is medication which can manage the condition and various ways of managing the condition.

You will find you have instant membership to a close nit community

How, Who and When you tell people, is a personal thing.

When you first get the diagnosis only tell ‘definite people’, ie you can’t ‘un-tell’ someone. Someone who you definitely want to know, this could be your mother, or Bert who works in the Banana Emporium I will not judge you.  You can’t tell Nosey Nora from Number Nine about the PD as soon as you get home, and then wonder how the whole neighbour hood knows before you’ve  cooked your oven chips.

Make an appointment with your GP for a weeks time.

Don’t google
Don’t give up any activity
Don’t give up exercise
Don’t give up anything
The moment of diagnosis has not changed you,
You are still the same person as yesterday, only better armed
You now have knowledge
This ‘thing’ has a name
You are not alone
‘You are not ill you have a condition that needs to be managed’

Day seven after diagnosis :
See your GP around this time
Ask about PD nurse
Not every health authority has a Parkinson’s Nurse. However, it is worth asking as if there is a breakdown in communication, you might not be told. Always ask.
Ask some questions about Parkinson’s specialist Neurologists :
Not all Neurologists are Parkinson’s specialists. Most do general neurology and have a specialism. So if possible ask about a Parkinson’s specialist neurologist.

Parkinsons UK

Spotlight YOPD (young onset charity)

The Cure Parkinson’s Trust

Hey hum Diddley dee

onwards and upwards

73 : Parkinson’s Awareness Month 2018 Round-up

The dog didn’t eat it, the cat didn’t wee on it, I have no excuses.  Sorry for the tardiness of this blog.

How do I round up this Global Awareness month of April 2018?

I have thought about it for a while

PD has totally taken over my life.

Parkinality, I defined it as Parkinson’s Personality. It was suggested the other day that it could mean Parkinson’s Reality, which actually I am starting to prefer.  Although I must accept that PD is a part of me now, I am forever trying to stop it taking over. So calling it Parkinson’s Personality means PD may think it has a proper zone in my personality alongside, daft, chocolate and eclectic.

Whereas, PD is definitely part of my reality, everyday is affected by it and it influences everything that I do, it is not part of my personality.  Clear as …

Life doesn’t end on diagnosis, it just gets more complicated.

Looking back over my posts during Awareness Month, there is a theme running through them.   You will have heard how crap the nights are, and how rubbish it is when my meds stop me walking.

This blog could easily have ended up a bit like the 24 hour news channels.  The general public are initially  excited by this, but are not sure why.  They will probably still only actually watch 20 minutes at News at Ten, the rest of the 23 hours and 40 minutes are white noise, and they often have to pad out stories in order to fill the time yawn.

  • In 1955 the half an hour news report may incorporate 10 stories, one may be;
  • ‘Pencils need Sharpening Shocker (headline).  In Sulleygrove Primary School, several children had told their parents that the pencils were not sharp at school.  Several wrote to the headteacher.  Pencils were sharpened.’ – item end and next item begins,


  • Same news story in 2018 and ten stories in all covered, but this time 24 hour news rather than half an hour.
  • ‘Pencils need Sharpening Shocker (headline).  Sulleygrove Primary School was opened in 1950 by the Queen of Old England Town (acting).  Giles Postlewaters, roving reporter went to Sulleygrove to interview the oldest, but still aliveist, resident who remembered that day.  (Cut to black and white vintage footage of visit, and 1 hour interview of Giles Postlewaters interviewing residents).   And so on and so forth….  The actual cliffhanger, that of the sharpening of the pencils appears after about four hours of filler VT.


As I may have mentioned PD affects everything and every activity.  I could write a 24 hour commentary on day … for example starting every day with :

‘Took meds at 6.30am, laid there impatiently for half an. hour, wanting to get up.  But trying to judge when meds will be working so I can walk, rather than fling myself from wall to piece of furniture.  In meantime do leg exercises, bending and stretching in bed trying to get brain messages working.  Tried to get up at 7am, struggled downstairs, meds part kicked in.  Really struggled right knee hurts where physically trying to drag foot.  It’s at times like this I find it really difficult.to remember it is a neurological problem and there is nothing physically wrong with me.  Finally drag myself downstairs it is 8.30am and I have been trying to get up since 6,30am.  Run a bath to try and unlock back.  So still not ready and it’s for not trying.  Pre PD used to be at the gym at 6.30am (I jest not), I love the early morning.  Walking to the gym used to feel like we were living on a film set a la Trueman Show.  Walking calmly but with a purpose, lots of people gathering to open up the world for the day.

i.e., Madge emptying post box, Reynold replacing lightbulbs, Dulcie cleaning windows, Rimpo delivering milk, etc etc

Each day generally starts like that.  But that would get very wearing if you had to read it every day (heaven forbid, it is certainly wearing actually living it)

Whilst reading the following bit pop the following album on you turntable, Affinity Formation, Long Hard Road – I especially like Blackbird.  (for those under a certain age play on your phone on spotify),

week commencing : Monday 2 April

  • Went to see a local band at a local pub, they were rather good.
  • PD Awareness Event, Wednesday : Boxing Day, not literally.  At a gym in London.  John Conteh there. Organised by Spotlight YOPD (young on set charity) and Rooney’s Gym.  Boxing is the new sensation, which could rewire the brain.
  • Column in paper this week
  • Pottery painting with family
  • Out to dinner wth girlfriends

week commencing : Monday 9 April

  • Alexander technique : used as a relaxation technique, and movement/posture
  • Went to have Hair done
  • World PD day :   Up to London for Cure Parkinson’s Trust event.  Research lecture and meeting and having a catch up.
  • mega bad day on sunday – PD wrecked whole day.

week commencing : Monday 16 April

  • Pilates
  • Parkinson’s UK lecture
  • Tennis
  • Column in paper
  • Dinner
  • Counsellor
  • Music night PDUK fundraiser.

week commencing Monday 23 April

  • Alexander technique
  • Pilates
  • Away at friends
  • PD Support group mtg
  • Watching Dance show

In amongst these things I also did the usual :

  • Making meals. (who am I kidding, M&S, takeaway. Waitrose, Tesco Express)
  • Sleeping a little (generally disruptive in the night, more likely to sleep in WH Smiths at 3pm than in the night … )
  • Writing (blogging and newspaper column)
  • and generally doing the things everyone does
  • I generally don’t have the motivation to do anything gardeney or cleaney.

However, I don’t get anywhere near the amount done that I used to.  Not only the PD physically stopping me.  But also apathy, easily distracted, lack of motivation.

So busy bumble bee week with PD awareness.  Divided our time between Spotlight, Cure Parkinson’s Trust and Parkinson’s UK.  Met some lovely people.  Lots of writing.  Eating etc.  Off to Comedy show tonight.


La de dah


lovely gg les



72. oooh it’s May let’s have a new disease


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 …


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.


71. The ‘Hole in my Bucket’ Ode

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

70. Severely Un-Stoic


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 ….



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