73 : Parkinson’s Awareness Month 2018 Round-up

The dog didn’t eat it, the cat didn’t wee on it, I have no excuses.  Sorry for the tardiness of this blog.

How do I round up this Global Awareness month of April 2018?

I have thought about it for a while

PD has totally taken over my life.

Parkinality, I defined it as Parkinson’s Personality. It was suggested the other day that it could mean Parkinson’s Reality, which actually I am starting to prefer.  Although I must accept that PD is a part of me now, I am forever trying to stop it taking over. So calling it Parkinson’s Personality means PD may think it has a proper zone in my personality alongside, daft, chocolate and eclectic.

Whereas, PD is definitely part of my reality, everyday is affected by it and it influences everything that I do, it is not part of my personality.  Clear as …

Life doesn’t end on diagnosis, it just gets more complicated.

Looking back over my posts during Awareness Month, there is a theme running through them.   You will have heard how crap the nights are, and how rubbish it is when my meds stop me walking.

This blog could easily have ended up a bit like the 24 hour news channels.  The general public are initially  excited by this, but are not sure why.  They will probably still only actually watch 20 minutes at News at Ten, the rest of the 23 hours and 40 minutes are white noise, and they often have to pad out stories in order to fill the time yawn.

  • In 1955 the half an hour news report may incorporate 10 stories, one may be;
  • ‘Pencils need Sharpening Shocker (headline).  In Sulleygrove Primary School, several children had told their parents that the pencils were not sharp at school.  Several wrote to the headteacher.  Pencils were sharpened.’ – item end and next item begins,

 

  • Same news story in 2018 and ten stories in all covered, but this time 24 hour news rather than half an hour.
  • ‘Pencils need Sharpening Shocker (headline).  Sulleygrove Primary School was opened in 1950 by the Queen of Old England Town (acting).  Giles Postlewaters, roving reporter went to Sulleygrove to interview the oldest, but still aliveist, resident who remembered that day.  (Cut to black and white vintage footage of visit, and 1 hour interview of Giles Postlewaters interviewing residents).   And so on and so forth….  The actual cliffhanger, that of the sharpening of the pencils appears after about four hours of filler VT.

 

As I may have mentioned PD affects everything and every activity.  I could write a 24 hour commentary on day … for example starting every day with :

‘Took meds at 6.30am, laid there impatiently for half an. hour, wanting to get up.  But trying to judge when meds will be working so I can walk, rather than fling myself from wall to piece of furniture.  In meantime do leg exercises, bending and stretching in bed trying to get brain messages working.  Tried to get up at 7am, struggled downstairs, meds part kicked in.  Really struggled right knee hurts where physically trying to drag foot.  It’s at times like this I find it really difficult.to remember it is a neurological problem and there is nothing physically wrong with me.  Finally drag myself downstairs it is 8.30am and I have been trying to get up since 6,30am.  Run a bath to try and unlock back.  So still not ready and it’s for not trying.  Pre PD used to be at the gym at 6.30am (I jest not), I love the early morning.  Walking to the gym used to feel like we were living on a film set a la Trueman Show.  Walking calmly but with a purpose, lots of people gathering to open up the world for the day.

i.e., Madge emptying post box, Reynold replacing lightbulbs, Dulcie cleaning windows, Rimpo delivering milk, etc etc

Each day generally starts like that.  But that would get very wearing if you had to read it every day (heaven forbid, it is certainly wearing actually living it)

Whilst reading the following bit pop the following album on you turntable, Affinity Formation, Long Hard Road – I especially like Blackbird.  (for those under a certain age play on your phone on spotify),

week commencing : Monday 2 April

  • Went to see a local band at a local pub, they were rather good.
  • PD Awareness Event, Wednesday : Boxing Day, not literally.  At a gym in London.  John Conteh there. Organised by Spotlight YOPD (young on set charity) and Rooney’s Gym.  Boxing is the new sensation, which could rewire the brain.
  • Column in paper this week
  • Pottery painting with family
  • Out to dinner wth girlfriends

week commencing : Monday 9 April

  • Alexander technique : used as a relaxation technique, and movement/posture
  • Went to have Hair done
  • World PD day :   Up to London for Cure Parkinson’s Trust event.  Research lecture and meeting and having a catch up.
  • mega bad day on sunday – PD wrecked whole day.

week commencing : Monday 16 April

  • Pilates
  • Parkinson’s UK lecture
  • Tennis
  • Column in paper
  • Dinner
  • Counsellor
  • Music night PDUK fundraiser.

week commencing Monday 23 April

  • Alexander technique
  • Pilates
  • Away at friends
  • PD Support group mtg
  • Watching Dance show

In amongst these things I also did the usual :

  • Making meals. (who am I kidding, M&S, takeaway. Waitrose, Tesco Express)
  • Sleeping a little (generally disruptive in the night, more likely to sleep in WH Smiths at 3pm than in the night … )
  • Writing (blogging and newspaper column)
  • and generally doing the things everyone does
  • I generally don’t have the motivation to do anything gardeney or cleaney.

However, I don’t get anywhere near the amount done that I used to.  Not only the PD physically stopping me.  But also apathy, easily distracted, lack of motivation.

So busy bumble bee week with PD awareness.  Divided our time between Spotlight, Cure Parkinson’s Trust and Parkinson’s UK.  Met some lovely people.  Lots of writing.  Eating etc.  Off to Comedy show tonight.

 

La de dah

LES

lovely gg les

 

 

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