103. A great evening

do not adjust your sets (that’s tv not train), unless you need to of course.

yiperdeeedoohdah a positive night post…

a smile to accompany your toast and lactose free chocolate spread

first ‘proper’ poetry reading evening with (now) fellow writers – coz apparently that is wot I is.

not that I haven’t read properly at the others. but many were open mics where I have to bribe the audience away from their beer with the promise of ‘dust from space’ in order to get their attention.

last nights people listened and laughed and clapped

pd kicked off but I didn’t rant

fun evening thank you


101. I shouldn’t be posting now

okay daylight hours on a Monday and I shouldn’t be posting

I don’t usually post in this state because one it is very slow going typing and could take me a while and also I am not feeling positive

this is a low time … it isn’t night time it is daytime. but it Is completely rubbish no one can understand what this feels like. to be completely rubbish in the cold light of day , people are about now which is good but then oh I don’ know what I am waffling about. people I am talking people without pd are going about their daily business and I can but I can’t. I don’t know what is going to happen from one minute to the next.

atm when I am switched on I actually feel veery normal, swishing about and being a speed walker round the supermarkets and almost annoying swishy person again. I feel invincible. amd wonderful

that makes the switching off even more horrible I have had a glimpse of normality I like it and I want it to always be like that. I am sorry for posting this but then you are subscribing for this and I did warn you at 5 years it was going to get worse. now seven years and the extremes are awful oneminute frozen my fingers are just about moving very slowly thank goodness for auto correct. but I was totally dyskenesic any minute and well I could on,

I know I will re read this and go flip I shouldn’t have sent this.

and I want no sympathy that is not what this is about . awareness of hidden invisible pd and other conditions that are invisible to others. everyone has something going on. please cut people slack (does that come from fabric cutters) when they are a bit off you have no idea what is going on inside.

over and out. I am ‘fine’ as we all are

100. 100 and not out

Now AWBC* (all will become clear).

One hundred had to be a good post … a poignant post, a meaningful missive, not pathetic prattle.

I’m on the radio … A new radio station organised and presented by people with Parkinson’s (but you don’t have to have it to listen to it) called Shaky Radio is available to listen to on the internet. Full of really smashing stuff including music, meditation, medication, musings and mice.

So find it at www.shakyradio.co.uk I am on at 5pm today (Wednesday 9 October 2019, in case for you today is Thursday 28th November 2019191).


I have just realised I have actually done more than 100 posts if you include my new sections, numbered separately … (I won’t be doing that as it will spoil it for me). So forget I’ve said this, but you probably wouldn’t have notice unless you are a VOP**

** very observant person

4. What a dopaminatic evening

flipping heck now can’t type properly using one finger, don’t know how to do dictation on blog

this is where pd is really getting to me communication wise.

I have lots to say but can’t write and I mean its illegible. in the same way walking goes writing has started to disappear, I can’t hold a pen atm I can’t use my left hand thank goodness for auto correct

and I have had a magnificent evening . performed at an amazing charity night raising money for adults with difficulties.. I sold books ,,, gave donation to their charity and raised money for cpt as well.

my body is now giving in its exhausted but my mind is buzzing with ideas

soooooo flipping frustrating

poetry went down well ,,,, the wiseish man sang ,,,,


money raised for two causes and more awareness spread

okay in my mind do I hear ebay calling at 0026

yes I do I can just about scroll and pretend shop




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.


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

Various interviews and media stuff

January 2020 :Parkinson’s Life on line magazine and New Year 2020

December 2019 : Parkinson’s Life on line magazine and the ideal Christmas Gift

November 2019 : Parkinality Column in the Bishop’s Stortford Independent Newspaper, with attached video ‘This is not me, This is PD’


September 2019 : The Parkinality Poetry Book featured by Parkinson’s Life in recommended book list.

2019 : The Cure Parkinson’s Trust and The Parkinality Poetry Book


August 2019 : Bishop’s Stortford Independent Newspaper Column published online about publication of The Parkinality Poetry Book.

June 2019 : Interview with Parkinson’s Life about ‘These Three Words’ our Parkinson’s Play

April 2019 : Parkinality Column in the Bishop’s Stortford Independent Newspaper, with attached video ‘ The Big Switch Off (and on again)


April 2018 : Interview the EPDA (European Parkinson’s Disease Association) about awareness and support.

May 2017 : interview with Spotlight YOPD (Young On-set Parkinson’s Disease) about exercise and tennis

2017 : Row the Indian Ocean : extract from Parkinality blog.

The Play

‘These Three Words, You Have Parkinson’s’’ a new play about early on-set Parkinson’s

It shows the roller coaster of emotions during the first few months of diagnosis.

It was shortlisted and won it’s heat of the Herts and Essex Play Write Festival 2019, Write Here Write Now, organised by Contexture Theatre. It went on to be runner up in the final.

Based on the premise that there is ‘more than one victim’ after announcing life changing news, this play has relevance for any event. This play is just a small part of a larger project coming soon … watch this space.