45. Roll Over Dystonia

Okay, another new word …. Dystonia.  Let’s see if Wikipedia knows this one …

‘Dystonia is a neurological movement disorder syndrome in which sustained or repetitive muscle contractions result in twisting and repetitive movements or abnormal fixed postures.  The movements may resemble a tremor’.

Yep, that’s about right.

Dystonia is something that anyone can suffer from (I know we try and not use the word ‘suffer’ for it’s negative connotations, but in some cases it is necessary).   It is a disorder in it’s own right.  People living with PD can also get it as part of PD.

Aside : great, now I get disorders within disorders –  which to be honest is unsmashing.

After five years of new symptoms appearing, I have found that the introduction of a new PD symptom seem to take the following course :

  • A slight acknowledgement of my body whispering a symptom, blink and I missed it.
  • A feeling of ‘flipping heck, could this be something new?’
  • Then gradually the new symptom getting more frequent and more aggravating.
  • A feeling of, to be honest, sometimes panic, and usually tears.
  • I then try and turn it round into a challenge, ‘how am I going to deal with this new Game Show round?’
  • I hopefully find a coping strategy.
  • A few months later it is a hilarious anecdote.

Time is a great humouriser ….

A bit like saying :

  • 1970s : (this was really not funny at the time, no sniggering please) : At primary school, everyone chatting about a new television show I hadn’t been allowed to watch.  To stop me going further down the ‘coolness ladder’, I vaguely gave the impression I knew what everyone was on about.  Playtime – and we did what it said on the tin, ‘we played’.  Everyone was set to ‘play’ Charlie’s Angels, a new cool American show about sassy flicky haired crime fighting girls.  I couldn’t quite believe it when I was being asked to be the main part – it was a sure fire bet that Charlie was a great part (no sniggering).. I couldn’t believe it  …  I was brought down to earth with a bump once the game began.   Think about it, if it needs explanation ask someone over 50
  • 2017 : hilarious anecdote in my disease diary, okay now you can laugh.

So, just to remind you, I can find no humour in this at the moment.

I have been getting dystonia in my left foot for a while. As typing a bit twaddley atm a few bullet points :

Starts without warnng
Whilst out and about
Left foot when it started
Toes curl and clench
Then foot turns and twists
All involuntary
Doesn’t hurt, but toes and foot twist harder and harder
Unable to walk on it, in fact can barely stand
Legs still bend and swinging

Recent twaddley developments :

Started happening in right foot as well.
The other morning started feeling it in my foot before I got up.

Dystonia has been challenging me for a while and frustratingly trying to think of a way of cracking this new Game Show Round.
The outcome is not being able to walk, however it is not a rhythm thing, the usual music tricks didn’t work.   Remember it is a brain problem, rather than a physical problem.

Then one day :

Dystonia in left foot struck on way out one evening
Flipping heck (stronger expletive used).
Then started going in right foot
This was serious …
Okay stopped walking, the ususal music trick doesn’t work so I thought hang on a minute singing???

So put my headphones on with a tune from a suntanned 80s double act who asked everyone to Choose. Life, and sang at the top of my voice.
Feet unlocked instantly.  This surprised me, but I didn’t flinch, or pause, I carried on singing and ran to my destination.

Ho-flipping ray

PS : I also get Dystonia in my face at times of extreme stress …

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