84, Awareness

I have always been fully aware of my failings … the PD diagnosis made me very aware of a new one …

My inability to cure Parkinson’s disease.

Now this may seem a harsh sweeping statement  … but it is realistic and truthful.

Now annoying people say (I am, but I don’t) there is no such thing as ‘can’t’ …

You know what I am going to say next …If I had a go at curing PD, aged 50, with no scientific knowledge… well I can’t be bothered to type the outcome.  Even the most optimistic will see this is ridiculous.

So rather than dwelling on this ‘failing’.  Since the moment I was diagnosed I have been harping on about awareness.

Now over the years many people have confronted me (some quite assertively) saying what is the point of awareness.  People have argued that it is a waste of time and is not actually doing anything. 

Btw Another of my failings is I am not a good debater.  So quite often I have tried to put forward my thoughts and reasons for awareness but the words come out all wrong and I sometimes feel a little intimidated, by someone saying ‘go on … tell me what is the point?’

Just a minute before I go on I just  want to write …

Everyone has different personalities and different ways of communicating there is no right or wrong way.  Equally doing nothing is also fine … the most important thing is not feeling  isolated –

I reiterate I personally cannot cure PD, but …

There are a lot of companies employing very clever people who have lots of knowledge.  

There are a lot of scientists out there waiting for the next ‘job’ . 

There are lots of extremely wealthy organisations, and individuals who have spare cash.

There are a lot of (probably) bored politicians and eloquent public speakers just waiting for a reason to get their soapbox out.

So a quick digression …. A moment on isolation

PD is isolating with many invisible symptoms, lack of understanding, lack of empathy, it is unpredictable and debilitating.  Also unlike other diseases in the whole global scheme of things not many people have it, and it is not fashionable. 

So (and I may confuse you now) actually most people are aware of PD, ie they know it exists.  But they are Not aware of what it actually does to a human being – after all people think it is just a tremor.  Even if you are aware I live with PD, then for maybe a third of the day I Look very tip top and ‘normal’, the other two thirds I am completely debilitated.  And actually unless I tell you, as I don’t have the PD calling card, a tremor, then how would people know?

Everyone is different but when my symptoms kick off, they do so without warning.  The rug is literally whipped away.  I cannot walk, mood dives, dexterity goes, even if I look well the invisible symptoms could be kicking off and as we don’t (yet) have ‘how we are feeling’ readouts scrolling across our foreheads – unless I tell people about the invisible symptoms they won’t know .  Actually (and I am harping now) even if I do tell them after they say ‘you look very well’ that I am constipated, have apathy and chronic insomnia unless you have it, you can try, but you won’t understand – harsh but true.

Sooooo the world needs to know that worldwide thousands (exact numbers difficult to guess) of early on set (diagnosed under 50) young men and women were living with a degenerative neurological condition, adding to the older people living with PD .  If pharmaceutical companies knew they could make even more money and get publicity and kudos from curing PD , and politicians had a slight sniff of the fact they might get the key to the door or enhance their political profile and popularity with the public if they were instrumental in gaining funding and pointing research to PD.  

And if the world  understood just how awful and debilitating PD  is ….  Then finding a cure  would become a priority

However (this is is the time for the big awareness word) Awareness is key.  And annoying phrases are actually less annoying here … from small acorns do big oaks grow, and a ripple travels a long way (well something like that)

So awareness  … I’ve said I can, but what have I done.  Now this is not earth shattering stuff but I hope that someone somewhere is listening .  If everyone with PD makes someone aware, does something … it can be something tiny … like telling the man  behind the cheese counter whilst buying edam that she has PD who knows that man’s uncle might be a neuroscientist or multi millionaire pharmaceutical investor – don’t snigger. In the same way film stars go to the toilet, neuroscientists will have uncles who work on cheese counters,

Now … I have not tied myself to anything yet, but my small micro attempt at planting and nurturing that acorn are :

And I know its not ‘the done thing’ but  yes I am blowing my trumpet … I am really  proud at what I have achieved …  a lot of people questioned why I have put my head above above the parapet.   Four people in particular have supported me throughout  … and continuing my tradition of not posting pictures of my food or mentioning names … fish and chips is all i am saying ….

Writing my blog and promoting it about living with early on set pd

Writing my fortnightly column in the local paper about early onset 17,000 words, 24 columns and still going 

Performing on stage with parkinsons my poetry

Me and the wiseish man giving talks to medical staff and local groups about living with PD.

Being honest about how I feel … if you don’t want to know how I am don’t ask.

Ps some people may find my writing jokey and flippant – i am not and it is not really – there is a method to my madness, – if I wrote my first blog brilliantly but it was really upsetting to read will people read more.  My strapline is 

Information by stealth .

A friend once said they felt disrespectful reading my blog because they laughed and it was on a serious subject , Perfect …. laugh and learn hoorah 

So all of this might or might not —-

Ultimate aim get  through to a scientist or investor and a cure

But as important –

let someone with PD know they are not alone

Educate friends/family

Not feel alone with this flaming disease

Waffle – no prizes for reaching the end 

So there you go

Over and out 

actually if you can cure pd then just do it please don’t wait politely to be asked —-

 

 

83. Call off the search …. I am here

You know when its goes past being ‘acceptable’, sprints past ‘just about acceptable’, ambles past ‘this is not funny any more’ … ending up at ‘where the expletive are you you stupid expletive’ … ‘headlong into people arguing over who gets first dibs on your fluff collection.  Well that’s me at the moment.

There’s no easy way to say this but  …‘I am okay’

Blog 82 may have made some a a little sad and concerned.  Especially if you only know me as a twinkle in a blog.  If you know me in real life, then you know although a tiny bit unhinged from time to time i am okay.

20 August 2018 was the last post and it is now 18 October – flaming  Nora* thats a long ole time

*Nora is not on fire be calm

List of excuses : in no particular order

  •  I am  writing a lot of  Poetry at the moment – one hundred poems and rising.
  • I am  performing said poems at a couple of festivals and open mics and am getting ideas above my station.
  • Putting together a poetry book to sell.
  • General distractional faffing
  • Me and my ‘wiseish’ man have given a couple of talks about living with pd.
  • I went on holiday with my wise ish man – pd came with.
  • Still writing for local paper 24 columns 16,000 words and rising.
  • Had full hip op recovery has been v awful.
  • Disease to be experienced.
  • and so on and so forth – flamingo heck and atj.

If Mr helpful administrative tech guy is reading this – I would like to put together a Parkinality website to group everything together (that’s the Capricorn in me) then I would like to creatively bring all my waffley twaddle together in a one stop shop (or one shop avoid) of all things Parkinality.,

So I was going to write something this morning in my blog about a crubbish pd morning but thought I can’t do that as I haven’t written for so long.  I need to compose an excuse preamble.

So preamble done which will have to suffice as I have Marylebone to hover above,

zip er dee doo dah and atj

 

les

82. This is how it is….

This is a warts and all post (no warts yet) written straight off at 3am.   I am fine but this is how it sometimes feels like . Not every night and not all the time …I will listen to some music regroup.

I cannot stand
I cannot sit
Feeling 100 percent shit

I cannot shout
I cannot cry
I am not going to lie

Please noone wake please world stay asleep
I don’t want anyone to hear me weep

This is 3am
In the light of day I will start again
But atm I am awake
Standing still
Trying to be human
Wishing I wasn’t ill

Yes Ill because that is what I am
I could dress it up
But I don’t think I can
There is no other word st 3am
I am Ill
There I said it again

81. Flipping heck …

Crikey don’t know what has happened … PD is switching on and off, in and out like the flipping hokey cokey

I think it read post 80. and thought aha I will keep her angry at me …

Freezing up all over the place .. and because of hip replacement op (need to do a whole blog post on that one) I can’t dance to get out of the rubbish PD.

Need to refocus – which involves chocolate and loud music …

 

80. Chronic Disease …

A wise man said that there are five stages of coming to terms with a chronic condition; denial, bargaining, anger, depression, acceptance.

I definitely haven’t reached acceptance … I can’t even imagine what acceptance will feel like, but I hope it feels good and tastes of chocolate.

I have touched upon denial, bargaining, and depression :

Denial: I don’t believe I have been in complete denial.  But I am often quite stubborn and I refuse to make allowances for PD

Bargaining: if I do something in exchange for getting rid of PD, fundraise for example, with the hope that it will go away.  

Depression, I haven’t been depressed but I definitely have very low points.  

Anger:  just recently I have started feeling that when things start going well PD is waiting to disrupt it.   Anger is definitely affecting me … well maybe less anger, more intense frustration. 

I can honestly say this is the first time in the six years since diagnosis that I have felt angry – this may surprise people without PD.  Surely being diagnosed with a degenerative (currently) incurable neurological disease would make me angry.  Well, no, to begin with it didn’t.   I felt relief that someone believed my symptoms,.   

The first year of diagnosis I would call the ‘(slightly odd) honeymoon period – now before people think I have gone completely doollaylly – let me explain.  I had had symptoms for a long long time, no one believed me, I had got in quite a low place and felt very alone.  Then all of a sudden eureka someone believed me, it had a name.  I was very fortunate that I had a PD nurse, and was put in contact with a new community who understood.  Early on set is a select group, but through social media etc, I found new friends and a community.  In the early days the PD was really (compared to now) just an inconvenience, always there, but didn’t stop me doing anything.

Today is different – today when PD kicks off I literally stop walking, or operating, or slow down or cry or shout.  Honeymoon period is over – now it is taking hold.  I am angry that it is properly disrupting my life – and it won’t ever go away.  My life is ruled by tablets, organisation, planning, flaming PD.

As we know negativity is bad … it just makes us feel sad and drags us down. I know I need to turn it around.  I know I can do that.

I spoke to the Samaritans this morning – to talk things through… they didn’t offer any advice just an ear.  I wrote this as well – straight off – it is how I deal with things.  I work things through with words – I will turn this corner, maybe not in a handbrake way but more a slow meander …

It’s so unfair having this disease

It is wrecking everything and it does so with ease

It does’t care it doesn’t love 

It doesn’t know what it is doing

It just does

Another perspective :

PD is not cruel it is not unfeeling,

It does things without thinking about it

It is not premeditated

It doesn’t hate me

I need to learn to live with it by my side

I need not to hurt

I need not to blame

I need to think of PD, not as the enemy

But as a disease which needs help

I can’t get rid of it

It can’t get rid of me

I need to work with it

And not fight against it …

Fighting wastes energy 

Fighting is negative

Negativity breeds contempt

I need to learn to move with it

I need to learn to live with it

I need to feed it the dopamine it craves

I need to be kind to myself

I need to live with PD 

PD needs to live with me

When PD breaks through

I need to calm it down

Trying to keep going doesn’t help

Trying to work through it doesn’t help

Trying to fight against it doesn’t help

Hating it doesn’t help

Maybe trying to listen to PD

Trying to listen to my body

Taking it on board

Just trying not to be negative

Negativity squashes positiivity

A change of mindset …

 

 

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.

FLAMING HECK

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.

IT IS KEEPING ME AWAKE (I think)

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

Diseassociation
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.

Cricky
Blimey
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