62. Parkinson’s Awareness Month : April 2018

Firstly apologies, this is a bit of a, ‘hark at her’ post …

*in a proper (kind of) published writer way … I need to preface this by saying excerpts of this will be seen in other publications.

Now if. you think, lazy/crazy lady, why can’t she write new copy (technical or wrong term – delete as applicable)? Well in this case there is only really one way of saying some things – I could change the word order to make it different but would that things only confuse.

‘Ere we go …

April 2018 is Parkinson’s Awareness Month and I am asking you to join the campaign. Don’t worry you won’t have to chain yourself to any railings, burn any undergarments, or make a placard.

Instead, I am asking you to please use the hashtag #UniteForParkinsons on social media and the corresponding Twibbon on your social profile, Facebook or twitter.

I sense a divided readership. In an Information Venn diagram, where there are three groups.

  • Those who dash away immediately and carry out the instruction to the letter.
  • Then those who are a little perplexed at what Mr Ross is going to do with the ribbbon.
  • Finally those in the overlap who have heard the word, but are a little scared they will break their computer.

Anyone who definitely knows what I am talking about, please pick a book and go and sit quietly on the carpet and await further instructions. Everyone else, please read :

In simple terms I believe that a twibbon is a computer frame/picture you can (probably ask a child, if you need to) put on your profile picture on twitter or facebook to promote a campaign. Using ’hashtag’ just means putting #UniteForParkinsons on your Facebook page or twitter account.

The instructions can be found here: https://twibbon.com/support/unite-for-parkinsons. You just have to authorize the Twibbon app to log in to your profile, and the logo will be added to your profile picture, on either Facebook or twitter.

#Unite for Parkinson’s is a campaign created and launched by the European Parkinson’s Disease Association (EPDA) and Parkinson’s UK. It aims to raise international awareness of the condition on World Parkinson’s Day (Wednesday 11 April 2018), over 200 years after it was first officially recognised by British surgeon, James Parkinson. Involving countries from Argentina to Zimbabwe.  PD affects more than 10 million worldwide.

So to summarise :

April 2018 is Parkinson’s Awareness Month

w/c 9 April 2018 is Parkinson’s Awareness Week

and the main event :



Take a look and/or listen to these :

Parkinality now has a Facebook page :  please like/follow to get blog updates and additional twaddley waffle from me.

Take a listen to this fantastic album on Spotify or I Tunes : Long Hard Road, by Affinity Formation

Take a read of this from time to time : parkinsonslife.eu

Parkinson’s UK confidential support line : 0808 800 0303

Parkinson’s UK website : www.parkinsons.org.uk

Cure Parkinson’s Trust : www.cureparkinsons.org.uk

Spotlight YOPD : (young onset website) : www.spotlightyopd.org

EPDA (European Parkinson’s disease Association) : www.epda.eu.com

Michael J Fox : www.michaeljfox.org


61. The ‘have I lost the plot’ ode

They gathered at midnight, the motley crew
Steve had no idea what they would have to do
He had seen an ad in the local rag
And had immediately grabbed his man bag
The ad was cryptic, it didn’t give much away
Bring a spade, a doily and a bale of hay

It was a strange list, but he did as he was told
Christ, what was he doing – he was 75 years old
Replying to an ad, following it through
He really truly, didn’t have a clue
He was taking a risk, chancing it all
An alien abduction, started to sound normal

Steve finally arrived at a field in Kent
To find a spaceship, where an alien leant
Beaconing to him, to join him on board
For some reason, it didn’t seem untoward
Steve ran chanting ‘eclectic, artisan, niche ‘
Joining him for a hob nob and some quiche

Steve and Malcolm the alien danced all night
Steve was loving the vibe, but try as he might
He couldn’t relax, he couldn’t calm down
He was still wearing his PD frown

Then Steve awoke, rigid, unable to turn
Next the dystonia began to return
Steve was sad, he had left his dream
Where everything wasn’t as it would seem
Where aliens existed, and Steve was free
And it wasn’t all about disease, and sodding PD

60. Speak no evil, smell no evil, write no evil

‘See no evil, hear no evil, speak no evil’ –   available as a top class ornament appearing on a radiator shelf near you.

In the world of PD, PD has rewritten the rule book again and (with my twirling assistance) created not so much ‘three wise monkeys’, but ‘three twaddley ne’er-do-wells’

‘Speak no evil, smell no evil, write no evil’.

  • ‘Speak no evil’ :

Imagine this blog spoken – apologies if this gives you an imaginary headache.

Now imagine that you can see that I am wittering away, but can’t quite hear what I am saying, as I am speaking extremely quietly.

Imagine again, that you finally work out what I am on about, only to realise it was a load of waffle.

Apologies for the virtual headache.

I often describe new symptoms as whispering to me when they first appear.  Well recently ‘whispering’ has been whispering to me.  It actually took a friend to point this out, I didn’t realise I was whispering.  I had no idea there was anything different about my voice volume.

In my head I was still talking at a normal volume, but to friends I was whispering.  When I raise my voice, in my head I am shouting, to others I am talking at a normal volume.

In the same way that movements get smaller, the voice gets quieter.   Not sure why.  I could google (responsibly) and find the answer – but I can’t be bothered – sorry, I could make it up, but I did promise honesty.

I am trying to force myself to speak louder.   This is difficult as in my head I am shouting.  I keep asking my friends what volume my voice is.

This is difficult in certain social situations when whispering is called for.  So when I am talking about the couple on the other table in the restaurant, who are texting, ignoring each other, whilst picking out the nuts from a nut cutlet.  I have to trust my friends that I am not shouting.

There are voice exercises, which will help me to speak at a normal volume again – so as always I am on the case, and will investigate that.

Also singing is supposed to be good – so I will continue with the Sunday night karaoke, which is now for medical reasons.

  • ‘Smell no evil’:

‘The other morning I could suddenly smell myself’.  Now an odd statement, which was even odder to experience.  In the same way that I didn’t realise I was whispering, I didn’t realise I couldn’t smell very well, until I suddenly could again.

However, I am hoping that is where the similarities end – friends told me about the whispering which I didn’t know about, no-one has mentioned what I smell like.

Again, I don’t know why.  Equally I don’t think there is anything I can do to smell better – apart from applying more cologne.

Ho hum diddley dee – if I’m viewing your house, don’t bother with the freshly baked bread and coffee smell.

  • ‘Write no evil’  :

My writing is untidy, and it has got untidier, due to dexterity problems.  I had heard that PD could make writing get more difficult and I had assumed that was the extent of it.  Writing which was untidy.

oooh no – I was wrong, so wrong … the other day my body whispered about writing.  I was writing an ode (as you do) in the old fashioned pen and paper manner.  And gradually I couldn’t write.  I physically couldn’t write.  My pen control got more and more difficult, the ink on the page got smaller and smaller and completely tiny and illegible.

Flipping heck.

So at the moment these new symptoms are whispering ….

PD is truly CRAP. (hope that wasn’t in a whisper)





59. Night Top Tips : for People with PD

This blog is very niche : it is specifically for people with Parkinson’s.

I promised to write about ‘difficult to talk about things’.  So here goes …. night time is particularly difficult.  It is an area people don’t really talk about.

PD is 24 hours a day, it does not sleep, and I need sleep.

Meds are low in the night, so it is important that everything is organised …

A few top tips ….


  • Lightweight (in weight) duvet (difficult to move a heavy duvet when meds are low)
  • Slidey fitted sheet on bed, which means it is easier to get out of bed.  Try sliding on something slidey, and then try sliding on something UN-slidey.  Available mail order from older people’s catalogues (true).
  • Metal grab rail – not sure of the technical term, but it has long prongs which slide under mattress to secure it, and then I have a small grab rail at the side of the bed.
  • Meds and water next to bed
  • Spare medication and spare water.
  • Phone charged in room.
  • Torch to see meds in night – to check am taking correct ones.
  • Washing up bowl under bed (not for washing up in).  In case I am caught ‘Williamson*’ in the night.  (Explanation probably required :*Williamson refers to Jennifer Williamson at number 24 who is ‘short’.  Why did I not use a famous ‘short’ person, well don’t want them to be cross when they realise what their name is being used in place of the word ‘short’)

** Okay for transparency and  as I promised to write about things which are difficult to write about I will re write this point – in capitals (aka shouting) … to show how unembarrassed I am …


All of these top tips make for a slightly easier night.

Sleep well ….