NO EMOJIS SYMPATHY HEADTILTING
Parkinsons’s Awareness Month. An interesting concept. I have been faced with this conundrum numerous times whilst preparing for the month.
I have been posting a lot and dressing twaddle up in ‘odes’.
Actually I am going to say how I feel … without a fancy dress outfit over the top …
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Stoic is a new word in my armour. Not one that I made up, I over-read it in a Parkinson’s Awareness blog.
‘A person who can endure pain or hardship without showing their feelings or complaining’
Well I haven’t been this. I have been truly un-stoic.
I am afraid my PD gets a constant voice over. Talking through the pain, swearing etc. I should point out this is not a voice over in my had, it is an actual out loud broadcast a la ‘spillage in aisle 3’.
I am on constant broadcast at the moment. Unable to cope with the changes in this sodding condition.
- When meds are on I am literally very well . The look on people’s faces of one of complete shock that I should suggest I have pd.
- I find myself over insisting … for some reason wanting, not sympathy, but a bit of understanding,
- When meds switch off it is getting faster, I have no warning, 2 or 3 times a day.
- I can literally just about get about by putting my hands on the walls and sort of throwing myself from piece of furniture to wall etc etc to get about. My legs lagging behind my top half.
- I get dyskinesia in my left arm. It is starting to kick off, I have just taken meds and I get a bad tremor in my left arm as they are kicking in.
- The floor is a flipping assault course, I can’t pick things up, as can’t bend to floor at the moment.
- I am looking at the table and wanting to tidy and clear but I can’t
- Pre PD it would be a 5 minute job, now it seems unsumountable at the moment..
- I also get severe rigidity and dystonia in my leg and arm at night … ho hum
I also swear a lot – fiddlleysticks is the preferred term.
I usually attempt to inform by stealth, by dressing pd up in a few silly jokes and the odd ode.
Sometimes though ….