77. Woe is me …

Just amended this slightly, if you read this earlier, I have made a slight alteration.  I am not talking about Carers who do a brilliant job.  I am talking about the word ‘carer’.

Diseassociation, dise(ase)association : to suffer as a result of someone close having a sodding disease

Crikey what on earth am I thinking of. Anyone would think I’m the only one in the world. I have a disease which affects my life and I’m actually shouting about it.

Everyone has something going on. Most people keep things to themselves. I just tell everybody. Look at me I’m ill.

What about everyone else. This thing affects everyone as a wise(ish) man once said ‘there is more than one victim’

I’ve got it
You won’t get it
I’ve got it
He won’t get it You won’t get it
It’s not contagious

Anxiety stress worry sleepless nights worry

Roles change
I won’t even try to speak on other people’s behalf
And it’s even more indulgent to say. ‘Okay yah really sorry but can you write about how MY disease affects you’

The person with the disease gets leaflets thrown at them about every kind of support, exercise, diet and some hocus pocus stuff

Those in the supporting role need someone too … there is support out there …

Quite often called ‘carers’ … an emotive word.   I will try not to get controversial but – when does a, son for example become a ‘carer’ if their father has PD?  Aren’t they still a son who looks after their father.  The word ‘carer’ I think conjures up someone in uniform from an outside agency.  A son is presumably not meant to swap outfits- in jeans and t shirt as a son, pulling on a monogrammed tabard as ‘carer’?

Difficult one, almost impossible to write about, so I will stop there.

Well maybe a bit more … apparently the word ‘carer’ is used on official forms.  So yes, if a son ( for example)  cares for his father, despite the fact that he is a son, his job is in effect as his dads ‘carer’.  So he can apply for all sorts of help and support – speak to Parkinson’s UK for advice, or your GP or Citizens Advice.

NB If you are a carer and son/daughter for your parent who has PD, you do not pull rank, you can still be told to sit on the stairs by your father for nose picking at the dinner table.

So in a nutshell – PD affects not just the person with PD, but everyone surrounding them.

Flipping heck

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