91. When will I learn ?

Firstly this is a retorical question obviously …. as ‘never’ is the answer which springs to mind.

Okay just realised you probably have no idea what I am talking about. ‘Learn what’ ?

Btw why can I hear seagulls? That is not the question you need to worry yourselves about.

The question is when will I learn that pd doesn’t just disappear. That I should pace myself. Woke up tip top totally nothing wrong with me.

Washing on – both crockery and clothes machines. Zipperdeedoodahing about. Pd was obviously distracted momentarily but is now flipping well back on my case.

Note to self …. clean crockery and washing clothes are not a priority in the morning.

Ho hum …. let the robotic breakfast dance begin.

90. I’m in hospital get me out of here…

Imagine being in a room with someone who :

Cries a lot, laughs a lot, moans a lot, talks a lot. Has raging dyskinesia (continuous movement) one minute, then frozen and sobbing the next, then ordinary the next. Who also has over one hundred poems she needs to practise.

But unlike the tv show, you can’t shout ‘I’m in hospital get me out of here).

I have just been on a two centre hospital trip, cricky the people on the ward deserve something more than a laminated certificate. They were party to 24 hour Parkinson’s.

Now, other people would have drawn the curtains round and tried to hide their feelings/symptoms. I am afraid, selfishly, that is not me.

Rather than paragraphing the past few hospital stays, a bullet list might be easier on the eye :

  • I don’t know if anyone noticed me singing Wham Rap one morning to get out of bed.
  • Antibiotics and the like have messed with my stomach and interfered with the absorption of the meds – so symptoms kicking off more than usual.
  • Use it or lose it. When switched ‘on’ I was walking the corridors to get my walking practise in.
  • My paranoid fretful nights are difficult at home, but in hospital they are awful awful awful. The staff were amazing. When I couldn’t sleep and I couldn’t lie down, I wandered up and down the corridor (trying very hard not to disturb everyone).
  • The staff at the hospital without exception knew that I needed my medication with me at all times so that I could self medicate. A few forms to fill in and it was organised. The first nurse I saw said ‘get it on time’ which is the tagline for getting the medication on time.
  • First day or so I felt guilty for pressing the call button to ask for something to be moved nearer when switched off. However I quickly learnt it was better to ask for a few minutes help to get organised than to try and do it myself and knock things over etc.

I wasn’t in for a Parkinson’s problem, but the PD dominated. It really has taken over, everything I say and everything I do. It was difficult for the staff I am sure to ignore the PD outer. I had to keep reminding myself that wasn’t was I was in for …

So thank you thank you to the staff and fellow roomies, all had the patience of a patient thing.

In the words of a political robot person … I (hope I) won’t be back (in hospital)

89. So what have I been up to …

I promised to be honest when I started this blog. So where have I been?

Since January 2017, I was probably guilty of a year of over-blogging, I realise I have now gone in the other direction, under-blogging. And to be honest (just a minute whilst I put my metaphorical hands over my blog’s metaphorical ears) it is actually my blog’s fault.

When I started the blog in January 2017 my technical guy put all the passwords on it and it was restricted to a handful of people. Partly due to lack of confidence on my part, but also because initially it was to explain to close friends and family what PD is, so they could re-read it without me having to keep explaining it.

Quite quickly it was opened up to a wider audience, to include subscribers and a facebook page. I was posting weekly (or twice weekly) for a while, and then things tailed off.

When the editor of the local paper read my blog and liked it, he asked me to write a fortnightly column. To be honest that has taken over … I had never done anything like that before and was extremely pleasantly surprised to find that a year on I am still let loose on page 8 every other week. 700 words, a full page, of Parkinality twaddle. It takes a lot of time to hone a standalone piece every fortnight for the paper. So to that has meant I have been neglecting my blog.

From that has come poetry writing and performing at local pubs, spreading awareness and generally making a nuisance of myself from an awareness point of view. I am now publishing a poetry book.

Along with all of this I have written with the wise-ish man, a musical and a play about Parkinson’s. The play ‘These Three Words’ was shortlisted for a local playwrite competition. It was cast, produced and performed and won it’s local heat, going on to come second in the overall competition.

Also PD is unpredictable and changeable but it doesn’t give me new symptoms every two minutes – thank goodness, that might be good for material for the blog, but not good for my health.

So PD has definitely become part of me. I have taken it on as a job (unpaid at the moment), as well as symptoms progressing and becoming more and more twaddly .

So, I am streamlining. The Parkinality page is now a website (well it was before but I am now calling it that). Divided into newspaper column, poetry and blog.

I am pausing the Parkinality facebook pages and twitter account for the time being.

All things Parkinality will be here, or in the fortnightly newspaper column.

Hopefully that will make things more simple.

Bye heck as like

88. Pardon …

Okay (what a rubbish way to start – apologies). I have been meaning to post for a long time. I have been putting it. I felt that the first post after a long while needs to be succinct meaningful and worth waiting for. Well the first word is a fail already.

Anyway (sorry another rubbish word), rather than coming in with a meaningful succinct witty post, I thought I would revert to type and produce another waffle post.

Just flicking (electronically) back over some of the recent posts I was a bit all over the place. Well, time has told me (and apologies if I am repeating myself) that the ‘all over the place’ has a technical term – Dyskinesia.

Dyskinesia is a new ‘thing’ – PD related but not actually PD.

It is a reaction to the drugs … ho hum Diddley dee.

So to summarise,

PD symptoms include slowness, stiffness and freezing – I take drugs to help me move again.

These drugs can in turn cause over moving which is called Dyskinesia.

Dyskinesia involves rolling involuntary movements, sometimes in one part of the body, or in my case all over.

I look like one of those blow up Santas, with long arms which flail all over the place in the wind. A flailing Santa – now that is not a good look (unless you are a flailing Mrs Santa).

It causes me to move continuously in a rolling action. Continuously rolling, talking quite effervescently and over the top.

Basically, when I am frozen I am quiet still and, to the innocent bystander, a normal member of society (to me I am rigid stiff frozen and unable to move – but ho hum). But basically I am not making a fuss I am just sitting there being a grown up.

When I have dyskinesia I look like a nutter (no offence and none taken). I had a meeting the other day and after an hour, the rolling and effervescent over exaggerated movements became bad enough for me to stop the meeting. The person I was in the meeting with who had never met me before, I think assumed I was very odd.

Ho hum Diddley dee – went to my neurologist today and he confirmed it was dyskinesia and has subscribed a new drug with (drum roll, wait for it) new side effects.

Dernerenererer bop bop.

Whistle while I whine

mmmm

Toodles

87. Up, Under and Over Medicated – Waffle Plot Mislaying Post

 

oooh look I am adding this bit after I have written the whole blog post – clever this computer. malarky – and not a pair of scissors, sheet of carbon paper, or spray mount in sight.  This blog post is posted live and unedited…. I am at warp speed at the moment – extremes are extreme tbh …I know that warpspeed will be replaced by no speed shortly … flip

After getting a bit blar-say (no I wouldn’t win a Bumbley Bee putting letters in the correct sequence competition) about sleeping during the ‘socially acceptable’ hours of 10pm and 6am (I realise some of you oddbods will be disagreeing with those hours but, ho hum, much like syrup and treacle we think we are the same until you take a scoop, we think we all sleep the same amount and between the same hours).  Anyway I am waffling now probably (no, make that because) I am over medicated.  So I waffle through my fingers, touch typing  at great speed.

Focus focus.

Let’s do this in reverse (no not that … this (the heavy heavy monster sound, one step …. ).

Today I was on the computer from 9.30am until 4.30pm. I would like to say I was being super important and clinching (or is that clenching) deals, but no I was inter county faffing.  Literally , I quite literally couldn’t tell you what I did.  I went on Facebook a lot, refreshed pages a lot and literally for seven of your earth hours I sat on the edge of the bed with my laptop (flip I am doing that now as well) for all that time …  Actually if only I could delete stuff and move stuff about on this damn computer, then I could delete the bit that said ‘I couldn’t tell you what I did’ – because I just did.  I bet Leonard Nimoy didn’t have this problem.  Sorry plot mislaid briefly.

Last night after being holier than a thou-est thing … and even giving advice to people about how I had overcome and beaten this sleep insomnia thing – they say something comes before a something else don’t they.  I was awake all and I mean all and I mean totally all night … again (I won’t say I didn’t know what I was doing) I did the same as during the day ie faffed.  Turn around … no not you Ms Bonnie Tyler, I mean, turn around those two sentences.  I actually did the same during the day today as I did throughout the night not visa versa – there is an order to life much like the chicken and egg scenario.  Clear as.

So with the three of you who are left who haven’t run for the hills … I will try and become more succinct (thank you oh auto spell correct).

Today on computer all day – didn’t eat all day until 7pm.

Last night – awake all night – not tired at all.

Yesterday didn’t eat all day …

Food could be another key in all this.  I am now getting worried about eating – and how to juggle it all.  If I eat then my tablets aren’t absorbed as well.  In the past the honeymoon period, in a non candlelit dinner way, of PD.  When (okay it is super awful,), but actually when meds weren’t working properly the underlying PD was actually manageable – a bit of this and a bit of that but not the twaddle marathon it is now.

Today when meds don’t work – due to them being bloody awkward, or me eating something lovely – then the result is really debilitating and tbh crap.  Dystonia, stiffness, rigidity, a little bit of a tremor (just to add some percussion to the proceedings).

So when I switch off I just want to be on again, hence today I took my meds a tiny bit closer together and then had another tablet and I am now completely all over the place.

Fliperty flop.

In an odd oscars and weird (a)wards way I would like to say … thank you to my wise-ish man … I won’t say, ‘I don’t know what I would do without you’ (because I just have), but I wouldn’t want to and it wouldn’t be fun.

I am now waiting to calm down so I can go to bed and to be honest I am kerrrr-nackered.  So I will cling to the edge of that flat bed thing with the hope I will soon (hypothetically) drop off.

Back of the net.

Larry (1), Ewey (2), Blankie (3), …. thud

(and if you got that ‘joke’ then you really are in trouble – it’s okay Mr Pilot man (if you are reading this) then you won’t so you aren’t.

LES

Sorry

 

 

86. My Parkinson’s Career

Some (odd) people might think that my life is purple, sparkly and tastes of aniseed – well it isn’t.

Every day for me is the same, but different …

For me every morning is Monday … like the ‘normal’ working population I awake every morning tired and unsure of what the Boss (Mr PD) is going to throw at me today.

I don’t work in the traditional sense, my job is : …

  • Managing PD
  • Waiting for meds to kick in.
  • Dropping things on the floor.
  • Waiting for meds to calm down.
  • Waiting.
  • Talking about PD
  • Exchanging tips about PD
  • Standing frozen, waiting for meds to kick in
  • Doctors appointments
  • A bit of charity shop rummaging … sparkly cardi for a round pound – oh yeah
  • Messing the house up (unintentionally)
  • Picking things up off of the floor
  • Doing what I can to produce my own dopamine on a budget
  • Timing doing things round meds being on …
  • Writing, blogging.
  • Laughing every other Thursday.

Having PD is really a full time job – it runs my life, and rules my days and nights.  Even if it isn’t kicking off, it could at any moment

I would love to get a full time job – and for maybe a couple of hours a day I am normal and could do it – but those couple of hours would not necessarily be at the same time each day or even all together.

You may see me physically outwardly tip top for more than 4 hours, but more often than not something invisible will be going on …

Also the couple of hours is a guess – as some days it would be 2 hours, some days 1, occasionally 4 hours with no PD interference.  But these would rarely be concurrent and would be at different times.

The opening hours of the shop (for example) would have to be blue tacked onto the revolving door, ‘shut’ ‘open’ ‘open’ ‘shut’ as my changing symptoms change the status of the retail establishment.

Apathy is wasting my day …

Trying to get some focus in my day, to get things done by using an app on my phone.  It divides the day into segments, and I decide what needs to be done.  So I write a list and, then the App asks me to type in the activity, such as writing newspaper column, tidying living room, and then it puts timer on for 25 minutes. Alarm sounds, and the App then times a 10 minute break.  And so on and so forth.

Has it worked – well no not yet.  Keep overriding the alarm.

I keep thinking tomorrow I will do it properly … nice idea though.

I also have a social media time ration thing on my phone to try and stop me wasting time… at the end of the time allowed for that day, the screen goes dark … then it says would you like to ignore this and carry on …. well derrr yes ma’am.

Case study … this morning ….

Woke several times in the night as per….

Then this morning, back spasming and twisting.  Uncomfortable is an understatement.

Didn’t know where to put myself, everything unbelievably uncomfortable. …lie down, sit up stand up … everywhere I put myself my body was being aggravatingly silly.  Back arching and body twisting and clenching and rigid.

Then both feet went into dystonia, clenching and twisting.  Very little sleep in the night.  Meds didn’t kick in at 630am, nor 9am … managed to go back to sleep and finally operating around 12.30pm.

Apathetic day today, not due to laziness due to blurrrrr.

Lack of sleep  … at the moment lack of sleep is really dragging me down.  Several of my drugs can induce sleepiness or sleeplessness – those ‘in’ and ‘less’ middle syllables are vital …   I cannot just stop and try new medications, it is not like thinking, oooh I’ve been consuming ‘rhubarb and custards’ three times a day for the past 6 months, lets try and substitute them for ‘humdrum humbugs’ tomorrow.  No, the ‘rhubarb and custards’ would have to be carefully removed from my regime and the ‘humdrum humbugs’ slowly introduced.

Yawn, but the yawn is important, gradually reducing the medication should be boring.  If it is excitingly sudden, then you will ‘do yourself a mischief’ or worse.  It really is dangerous to stop taking medication suddenly.  ALWAYS SPEAK TO A MEDICAL PROFESSIONAL.

So lack of sleep is a contributing factor to morning rubbishness.  I need to time my morning meds to co-incide with the mornings activities.  So when I had to leave home at 6.30am, I was up at 5am to start taking meds.

Quite Literally the first thing I think of in the morning (and every time I wake up) is when did I take my last meds and what was it, and can I move.  Sometimes I can sometimes I can’t – what an eclectic life I lead

Job Description : full time, no overtime, no bonus, no pay, no sick pay, no holiday pay or otherwise.  PD must be carried with you at all times in this big rucksack with spikes on it (okay not literally, but (hopefully) you see what I mean).

Life is Artisan

(a little bit rubbish and a bit wonky)

 

 

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