92. Tomorrow is ….

Well that’s not a good start, already confused. Tomorrow is … could be anything on any day.

For the purposes of this … tomorrow is Monday 1 April … tomorrow is the first day of Parkinson’s Awareness Week.

So lots planned….

A you tube clip of me called ‘The Big Switch Off (and on again)’ which will be attached to my newspaper column on their website.- will post a link when that goes live.

These Three Words – the Play on film will be posted over the next month.

Attending the Parkinson’s Eve conference about women and PD

Publishing poetry book

Decorating window of newspaper for awareness of support group.

And. many more folks …

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