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Old 04-01-18, 09:41 PM   #341
banda
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Default Re: Curse in Verse - the poetry of HD

Thank you xx
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Old 14-01-18, 12:21 PM   #342
Trish
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Default Re: Curse in Verse - the poetry of HD

While I am in here, quick plug for the book and the blog

The Book CURSE IN VERSE AND MUCH MORE WORSE

The Blog CurseinVerse (WordPress)

Sample poem from book below:

The Terminology

Introduction

This poem is about the use of medical terms when referring to symptoms of the disease.

Shortly after my husband was diagnosed, we were sent a copy of a letter to his doctor which was written by his Neurologist. It contained the word ‘anhedonia’. I had to look the word up and it made sad reading as it brought it home to me that, whilst my husband was still showing signs of recognising ‘pleasure’, it could be that he would lose even that most basic form of human awareness.

Because of the complexity of the disease, the chances are that many will come across words used in the description of symptoms that are not easily recognised. The majority of the terms given below were used in connection with my husband. I personally found it useful to look into the meanings of the words to try helping me get a handle on where those making assumptions about my husband were coming from.


“It’s all Greek to me!” Is the phrase in my head,
As the words on the paper begin to be read.
Is it Greek, is it Latin? I haven’t a clue,
But it sounds quite impressive how they describe you.

So I turn on computer and search on a word;
Oh why is the spelling of these so absurd?
And then one by one, as their meanings unfold,
It’s no wonder they use them, the sadness they hold.

‘Aspiration’, tells me though happy you’re fed,
The nutrition is aiming for your lungs instead.
‘Dysphagia’, tells me the food that I give,
Is making you choke more than helping you live.

‘Dysarthria’, tells me your mouth will not say,
What you want me to do; do you want it this way?
‘Bruxism’, tells me your teeth will grind more,
And whilst you do not notice, my nerves can’t ignore.

‘Ataxia’, tells me your order is altered,
Explaining the speech and the steps, which are faltered.
‘Dystonia’, tells I straighten in vain,
The stiff limbs contorting, contracting again.

‘Alexithymia’, tells me your feelings are dead,
Or you cannot express them as words can’t be said.
‘Anhedonia’, tells me you cannot feel pleasure,
Devoid of the feelings you once used to treasure.

‘Myoclonus’, tells me the thrashing in bed,
And the knee in my back, and the punch in the head;
It’s not that you mean it; it’s not aimed at me,
There’s a name for this symptom within your HD.


Please do not think the symptoms above apply to everyone with HD. Or that they applied to Steve. I thought I would add at this stage, Steve never did develop Anhedonia.

In Xmas 2010, a few weeks before he died in Jan 2011, Steve was still showing he found pleasure in the simple things in life. I naughtily gave him a small glass of port after his Xmas dinner in the hotel we were staying at. Sure, I had to use foam swabs which was a bit like giving him port lollipops but it was easy to tell he was finding a guilty pleasure in the taste of the port As for watching him sitting more upright than I had seen him in months watching the new Shrek video I had bought him and watching his face light up. Let's just say if I could define my own sense of sheer pleasure it was captured in times like that even so late on in terms of Steve's HD.

By contrast, my mum died of cancer a few years earlier. The day before she died she was pleading for a cup of tea and a ciggie. I was not allowed to give her a cuppa as they had given her a tracheotomy and there was no way she could be moved from the machines to sneak her outside for a crafty smoke.

She was then pleading with me to switch off the machines and let her die. No one would ever say medically my mum could have a thing called Anhedonia like they seem to assume those with HD may get. Trust me though, Steve experienced more pleasurable moments in those last few months than my mum did bless her.


I gave away two books this week at work. One to a lady who I often see on the Panels (I am a Mental Health Tribunal Clerk). The other to a community Psychiatric Doctor. The Doctor happened to mention to me she has a friend who has a husband with HD. In general I am getting good feedback from those who have read it/browsed through it. No one has said they are angry yet at how I criticise the system in so many places
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Last edited by Trish; 14-01-18 at 01:11 PM. Reason: Added the bit in green
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