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Old 05-09-15, 10:20 AM   #261
Trish
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Default Re: Curse in Verse - the poetry of HD

Ooops.

It would appear in the last post that the link to the book dropped out.

Another link is given below/ here in case anyone is interested.

sAMPLE POEM GIVEN 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.



http://www.amazon.co.uk/Curse-Verse-...ng=UTF8&sr&qid


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Originally Posted by Trish View Post
Hi all

Hope all are doing as well as can be expected.

Thought I'd pop in to plug the book again

CLICK HERE[/COLOR][/SIZE][/B]

Apologies that I am not as active as before on Messy Board but we all need to take a break at times.

Also... I am distancing myself at the moment where I have started a new part-time job. Apart from the impact on my free time, the job is working in assisting on administration for Mental Health Tribunals in the London area (Mainly SE).

I need to try and keep an open mind when sitting there while proceedings take place. Incredibly interesting; incredibly uplifting at times (see below); and also incredibly frustrating too at times as you can imagine but I need to sit and listen only.

My first day was a 'shadowing' session on a Section 2 case. The lady I was shadowing told me she had never seen a Section 2 patient discharged in all her time which was over 2 years. Fair to say she doesn't work every day, and that she doesn't only do Section 2 cases but that still made me nervous that it could be a box ticking thing rather than a proper hearing.

Anyhoo... I sat through the hearing and the patient was discharged which encouraged me greatly. Nothing to do with me I hasten to add. I just do the tea and run around with the paperwork lol but I reckon Steve is accompanying me too and having a little word in the ears of the Panel Members

Talking of Steve, we are still helping donate to the HDA, and indirectly to you guys, via the Just-giving Page where Crystal Palace are doing amazingly CLICK HERE FOR GOALS FOR GENES

Just as well I have the part time work. It's paying just above minimum wage and there are no guaranteed hours but at least it's paying for all the goals
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Old 20-09-15, 01:22 PM   #262
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Default Re: Curse in Verse - the poetry of HD

Just about to sit down and watch Steve's fave team, and now my adopted team play Tottenham on telly.

It's times like this it's a mixture of sadness and joyfulness.

I blogged about Palace; Tottenham; Steve and his dad in Playing for Laughs - click HERE

Still giving donations via my Justgiving Page and plugging the book which will hopefully one day go into profit. Click HERE if interested in reading about the book.
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Old 04-10-15, 12:06 PM   #263
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Default Re: Curse in Verse - the poetry of HD

Time for another book plug

The HDA haven't asked me to get any printed for the AGM so they either have a secret stash somewhere (highly unlikely) or they are relying on me to do all the promotion which is fair enough I suppose.

Anyone got any pointers?

http://www.amazon.co.uk/Curse-Verse-...=UTF8&qid=&sr=
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Old 05-10-15, 03:00 AM   #264
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Default Re: Curse in Verse - the poetry of HD

Trish..
I haven't got any "pointers"?...but I think it is scandalous. It is the ideal venue for your book to be on sale and they are fully aware of it...no co-ordination...if no one hears from me again...I've been red-carded, but...come on...give us a break....hda..... practically everyone at the agm would buy Trish's book and you haven't even made sure it is there????!!!!*****!!!!!
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Old 05-10-15, 11:37 AM   #265
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Default Re: Curse in Verse - the poetry of HD

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Originally Posted by shiraz View Post
Trish..
I haven't got any "pointers"?...but I think it is scandalous. It is the ideal venue for your book to be on sale and they are fully aware of it...no co-ordination...if no one hears from me again...I've been red-carded, but...come on...give us a break....hda..... practically everyone at the agm would buy Trish's book and you haven't even made sure it is there????!!!!*****!!!!!
Just to say that we always take copies of Trish's book to the AGM and have done for years. We also have some in stock at head office. You can buy or order copies at the AGM or order on the shop on the website.

Bill
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Old 05-10-15, 11:41 AM   #266
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Default Re: Curse in Verse - the poetry of HD

Quote:
Originally Posted by shiraz View Post
Trish..
I haven't got any "pointers"?...but I think it is scandalous. It is the ideal venue for your book to be on sale and they are fully aware of it...no co-ordination...if no one hears from me again...I've been red-carded, but...come on...give us a break....hda..... practically everyone at the agm would buy Trish's book and you haven't even made sure it is there????!!!!*****!!!!!
Awwwwww

Thanks Shiraz for your support.

I doubt the HDA will get you 'Red Carded' but I will set up a petition if you are to get you back
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Old 05-10-15, 11:46 AM   #267
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Default Re: Curse in Verse - the poetry of HD

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Originally Posted by william View Post
Just to say that we always take copies of Trish's book to the AGM and have done for years. We also have some in stock at head office. You can buy or order copies at the AGM or order on the shop on the website.

Bill
Hi Bill

Our posts must have crossed.

Could you please clarify where you are stocking your books from?

In 2011 I raised an order for a few copies for the HDA. I want to double check but if I recall right I think it could have been 20 or 30 copies. That was nearly 5 years back and I know I have ordered a few from you guys myself to give out where there is a min of 3 weeks print run if I order a reprint. Like I say, I want to double check how many I authorised for the HDA via my print run but even if it were 30 thats only around 6 a year sold and I know I have had some of those myself where I bought back.
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Old 05-10-15, 11:56 AM   #268
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Default Re: Curse in Verse - the poetry of HD

Deleted my initial reply as I have called the HDA and am asking for clear numbers of how many they have in stock including the ones they have for the AGM.

I still need to establish where the are getting stocks from if they have more than those I raised for them in 2011.
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Old 08-10-15, 06:13 AM   #269
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Default Re: Curse in Verse - the poetry of HD

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Deleted my initial reply as I have called the HDA and am asking for clear numbers of how many they have in stock including the ones they have for the AGM.

I still need to establish where the are getting stocks from if they have more than those I raised for them in 2011.
Have established HDA have 4 left in stock which will be going to the AGM along with order forms for anyone wishing to have a copy sent if they run out.

HDA have now asked me to provide another 20 copies which may, or may not, arrive in time for the AGM. I'm feeling a lot happier now I know it's not a case of having stockpiles of the book just sitting in a cupboard suggesting a lack of sales/marketing, or their getting the supplies from a less cost effective source.

Also well chuffed that a copy signed by Tony Hadley is going to be added to the HDA Raffle prizes

If any one of you guys wins it do let me know
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Old 18-11-15, 07:08 AM   #270
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Default Re: Curse in Verse - the poetry of HD

Time for a book plug me thinks.

As usual, if anyone has brought the book all reviews would be welcome. Good ones and bad ones as all are useful to those browsing whether to buy or not.


CLICK HERE FOR THE AMAZON LINK


Copies should also be available from the HDA Shop - click here.

Don't forget to look in the Shop for ideas for Xmas prezzies and stocking fillers.
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