50. A One Off Daily ‘keeping it real’ Blog – Warning fed up and tired

Head tilt and emoji free zone please …

small print : very tired and emotional atm, nightime awful and now trying to keep going.  everyone is different everyone experiences PD, and its symptoms and progression differently.   But the motor and non motor symptoms are now kicking off together.

I did warn you that some of these blogs would have to show it how it is … i.e. rubbish, without an annoying positive spin.  5 years since diagnosis it is more difficult to put a positive spin on some things.

This is a ‘keeping it real blog’

Flaming heck … this will be in bullet points for speed and dexterity problems :

  • No sleep last night – Night time meds all over the place.
  • There are three levodopa meds which are prescribed for different reasons to try and control the symptoms.  All of which are supposed to release in a certain way : controlled release (so gradually over 12 hours), normal release, ‘instant’ release.  Now obviously you will know by now that the unpredictableness of the condition and meds, means that they don’t always work.
  • ‘instant’ release doesn’t always work instantly, sometimes it doesn’t work at all.
  • ‘controlled release’ is very unreliable
  • ‘normal release’ is probably the most reliable sometimes (probably)
  • The unhumourus bit : overnight bradykenesia* awful, at the same time as muscles fireing on and off wanting to move.  Also in a lot of pain with shoulder and hip, problems as a result of PD.

*Bradykenesia : slowness of movement, so difficulty in adjusting position/moving myself.  This is not a made up word.

So my muscles wanted to go go go, and my body was finding it very difficult to move.  Imagine muscles flexing ready for a big load of energy, but body unable to move at speed.  Very uncomfortable and horrible.

I do take meds in the night, but they don’t always work…..

Ho hum Diddley dee.

Having said that, went to tennis at 10am and played for 2 hours – I don’t know either.

Over and out

Now very tired and house a tip ….



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