98. BITR

In answer to your questions :

  • Back In The Room
  • I know
  • A couple of months
  • Not sure yet
  • Not really
  • Yes it is

Okay that bit over and done with it lets GOWI (Get On With It – please keep up)

Me, okay sorry ‘my patient tech guy’. has been busy earning chocolate working on and revamping the blog. I know it’s still purple, revamping, not rebuilding.

Have a scoot round the new sections and links (although do exercise caution when clicking links, I cannot be responsible for careless clicking, broken links, changed sites or the information on other peoples sites ) and les soon.

LES

ps excuse the sometimes wonky typing or changes in font – why doesn’t it do it when you write it? – pd is getting in the way more and more – yawn

97. Struggling

I am struggling,/ the past few months have been a whirlwind of medical changes/challenges, PD rubbish, Awareness stuff and day to day real life twaddle (yes I am three dimensional I don’t live in cyberspace). So a few bullet points to bring you up to date.

PD and Dystonia are now joined by Osteoarthritis (and the hip replacement last July), and now IBD (possibly Crohns). Flaming heck PD on its own is bad enough,. So had to stop one of PD drugs as it interferes with the steroids i am on for the Crohns. Five hospital stays since Feb, on second course of steroids. Stomach liners interfering with absorption of PD meds. Now gone gluten free … aaa

The wise-ish man and I have done some PD talks, and he has played his album and I’ve read my odes.

My Newspaper column is going to every four weeks.. Which means I can relax a bit. =thankfully I don’t get a new symptom every week so quite challenging To keep the column fresh. It is it is such a brilliant opportunity that I don’t want to give it up. I do enjoy it, so once a month should be okay.

The play I wrote with the wise-ish man is still being viewed on the Parkinality You Tube Channel – btw it won its heat and came runner up in the final of the playwright competition. So that was a lot of work. It was well received, and was followed by an interview with Parkinson’s Life magazine

The musical is almost finalised – meeting this week to discuss taking that forward.

And last but by no means least my Parkinality Poetry Book is out and hopefully selling. I am doing all I can to promote it. Including a launch party and book signings. I am planning to raise money for charities through additional addons such as a raffle at the launch day, where the raffle raised money for PD UK and Cure Parkinson’s Trust.

I very excitingly have signage for my book POS (thats point of sale, not pirouetting ornithological salamanders).

Okay dyskinesia kicking off something chronic so must dash back to my 3D life

96. Indelazisive

Okay if you want to skip my waffle about being indecisively lazy … then don’t waste your time reading this ridiculous post … pop along to the Parkinality Poet section for news as to why this blog has been rather sparse recently …

Of course if you have more time than sense read on (don’t say I didn’t warn you)

Complete twaddle alert ….

Apologies … another new word …. Indelazcisive

INDE laz(y) CISIVE

I am being indecisively lazy – so not lazy par ce (no idea if that is spelt correctly or the correct usage), more indecisive.

Just counted up and 1 2 3 4 5 6 7 8 9 10 11 yes that is eleven unfinished draft blog posts hiding ‘behind the wobbly stage sets’- maybe I should just post them as they are – maybe I will maybe I won’t … ooh adding some excitement to this stale blog.

I am allowed to be harsh, my blogging has been lazy which means the blog is stale, like a ‘bread envelope’ (if I have to explain it it isn’t funny …so to the four people who don’t understand it …. actually it’s so obvious I don’t feel I need to ….)

Oh just go and look at the Parkinality Poet section to find out what is going on …. go on shoo shoo …

95. 1.55am

Not all as it seems 

Head up 

Chin up

Put on your smile

Pretend to be well

For a short while 

….

Coat on 

Shoes on

In your dreams

That’s not how it happens

All is not what it seems

….

Falling through the door

Having a long drink

Hitting the dance floor

It’s not what you think

….

Strutting my stuff

With a wink and a smile

I’ll never have enough

I’ll go the extra mile

….

Dance til I can’t

I get into the groove

Dance til I can’t

I love to move

….

Not a drop of drink

Has passed my lips

Don’t look like that

Its not what you think

….

Fall out the door

Stagger up the street

Smile at everyone

That I meet

….

Get to the house

Get through the door

I have reached the end

I can’t take any more

….

Just in time?

Just don’t know?

I feel pd start in my toe

Moves into my foot and my leg

Please no more, I try not to beg

94. 0,002 : ‘These Three Words’

Parkinson’s Awareness 2019 : A Picture Paints a Thousand Words.

Number 0,002

I may have mentioned the play which the Wise-ish Man and I entered into the local play write competition.

We won the heat and were runner up in the final.
Well, drum roll – it was filmed and here it is.

It is about being diagnosed with early on-set Parkinson’s and the fact that there is ‘more than one victim’. This affects the whole family and beyond.


This is part of a bigger project … Parkinson’s The Musical is written and ready to take it’s next step towards Broadway and beyond. Watch this space.

93. A Picture Paints a Thousand Words

Okay a day late with the first day of awareness month ,,, but you only know that because I have told you, so erase that from your mind. I could delete that but I’d rather write a sentence explaining I could delete it, rather than actually deleting it. For all you knew Awareness month might actually start on the 2nd April …

That last paragraph (sorry I mean first paragraph) was an example of waffle and letter wastage … I will be going for quality not quantity for this years Awarenessing. So rather than thousands of words I plan to post pictures both static and moving.

So I can’t promise no waffle – after all my cunning plan is to be so irritating and over awareness so much, that ‘they’ direct resources and expertise to find a cure for everyone living with Parkinson’s, just to shut me up.

A picture paints a thousand words 0,001, now not sure how to post a picture on my blog … oh crikey give me a minute or two. Okay managed it … not exactly exciting … but I didn’t want to peak too early …

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.