36. The Next Five Years

Due to public demand (where the word ‘public’ means half a dozen people), I am continuing with the blog.

If you have just ‘switched on’, I should tell you that this is the start of the ‘next five years’ (ie years 5-?).  For the ‘first five years’ please scroll down the menu back to the first blogs, January 2017 onwards.   I would recommend you read the first blogs to get some background, rather than jumping straight into the ‘next five years’ which will be rubbishier and (dare I say it) scarier.

Disclaimer :

I have come to the conclusion that I have been dithering about continuing because the PD is gradually getting both different (positive) and worse (negative).   The blog posts may well become more difficult to write and read.

If you have been paying attention you will already know the rules about sympathy and head tilting.  Some of you, (you know who you are), have ignored this and have still ‘head tilted’.   I am confident, however, that most of you will have thought ‘she reads positive’ and thus avoided head tilting.  However, now is the time to forgive the head tilting and to start the next five years with a clean sheet.

I should warn you that I think the next five years may test even the most staunch ‘non head tilters’.    I am not being melodramatic, I have tried to prepare you for this.  I have slipped in the words ‘degenerative’ and ‘incurable’ into many of the blog posts.

I will be (even more) honest with you.  The ‘first five years’ have been okay ish to write and I have enjoyed writing most of it.  Even the walking twaddle, it is rubbish and upsetting, but actually rethinking walking, and walking backwards through Leicester Square with friends is actually quite amusing (ed : stop right there, some eye leakage did occur).   This compares with today’s problems, for example a recent incident when in the darkness in the high street, dystonia hit my foot and I couldn’t walk at all … I was with a friend, but still scared and cold in the pouring rain, I couldn’t walk at all, backwards, forwards, upwards, downwards or sideways.

Please don’t feel you have to continue reading.  In much the same way as I don’t believe you should force yourself to walk through the London dungeons (I didn’t), or through the glass shark tunnel at the aquarium (I didn’t), or to continue reading a really really long book that you hate (I didn’t).

When reading the following blog posts, please bear in mind I have a really supportive family and lots of very patient friends.  I am under a really brilliant medical team at a top hospital who are ‘on the case’.  I am involved in the charities which are a vital source of information and support.  I am also involved in the local support group.  So all in all it may be twaddle but I am dealing with the twaddle with fellow twaddlers, those who understand, those who don’t (but try to), and those clever people who are trying to understand and cure this flaming thing.

So the blog continues.  I will continue to attempt to communicate and raise awareness of living with an incurable degenerative neurological condition, with as much positivity and humour as I can gather in a bag of colour blind hedgehogs*

*Obviously this is not true (hedgehogs are probably not colour blind).

** Two points if you can name the tv show this is a (rough) quote from.

35. My Music Playlist

(I know, I know, this is a one off maybe)

Music is literally a lifeline – I carry my headphones and ipod/phone everywhere.  Music has got me out of a lot of PD situations.

  • Silent discotheque in the living room at 2am – unfortunately PD doesn’t sleep.  So a new ‘thing’ is my left arm kicking off which is twaddle in the middle of the night – dyskenesia.
  • When I freeze walking, music can get me walking again.
  • When my mood crashes and I my eyes leak for no apparent reason … Music lifts my dopamine mood.
  • When I seize up I flail about and darnse madly to loosen up.

And so many other situations.

Music is so important… lots of things I do revolve around it :

  • Carrying my headphones and ipod/phone everywhere.
  • Weekly Karaoke in a local pub (I literally clear the bar, I assume they are dashing to see if I am available on Spotify).
  • Attending darnsing classes.
  • Watching and darnsing to local bands.
  • Learning piano and bass guitar.
  • Incorporating darnse and walking backwards and sideways in ‘getting from A-B’ (vital as I am not allowed to drive atm on the advice of my Consultant – just another nail in the twaddle).
  • And obviously ‘writing the Musical’ … more about that later.

So if you are a pwp (that’s not a ‘polite Wolverhampton penquin, but a ‘person with Parkinson’s), it is worth listening to a few tunes to see if they help.

This list is my list, which I am adding to all of the time …

And also some of the tracks have rude words in them …

In much the same way as someone must like twiglets otherwise presumably they wouldn’t be sold … music is very personal.

Anyway tis rude to copy …

So please create your own playlist …

Disclaimer – these songs help me, but I cannot be responsible if they have a different/no affect on you.  They help me to walk, relax, lift my mood – if they make you sneeze, eat squid and/or file your bank statements then, although the final one is useful, please try something else.


Trainwreck 1979 – Death from above 1979

Mr Brightside – The Killers

The Globalist (specifically at 4.23) – Muse

Psycho – Muse

Vertigo – U2

Rock Lobster – B52s

Kiwi – Harry Styles

Five Colours in Her Hair (US version) – McFly

Take Me Out – Franz Ferdinand

Can’t Stop – Red Hot Chilli Peppers

I Only Lie when I Love You – Royal Blood

Figure It Out – Royal Blood

Na Na Na Naaa – Kaiser Chief



Step Ball Change