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Old 20-04-11, 10:53 AM   #51
Trish
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Default Re: Curse in Verse - the poetry of HD

Here's the poem (mentioned in previous post) and the revised introduction for purposes of the exhibition:

THE TRUE FACE OF CARING The following has been taken from ‘Curse in Verse and Much More Worse’ which is a book of poetry and prose I have written about caring for someone with Huntington’s disease.

No carer sets out to harm the person they are entrusted to look after but the emotional, physical, psychological and even financial strains put on carers day in and day out can grind them down to the point of being out of their own control. We are all human when all is said and done.

In this poem I wanted it recognised some carers, like myself, can reach a place at our lowest ebb and feel we are reduced to such circumstances through no fault of our own, but – even worse – no fault of the patient either. That compounds out own emotional torture.

We are not monsters, just desperate for support, understanding, and a better feeling of self worth. In a normal life I would have been part of a partnership (a wife), but as a carer I lost my identity and sense of what I was supposed to be at times.


He’s woken up in a foul mood again,

And resisting attempts to get dressed.

“WILL YOU GET YOUR ARM DOWN!”,

She’s screaming at him, at the end of her tether so stressed.


The arm gets yanked, and he gives out a yelp,

But she’s far too angry to care,

No pity is given, he wasn’t much help,

It’s his own fault for leaving it there


The dressing is over, he’s now sat so quiet,

And he’s looking all scared and forlorn,

The moment is gone and she sees what’s she’s done,

And she wishes she’d never been born.


Now his carer, his gaoler, and torturer too,

She feels she’s an EVIL OLD COW!

She’s driven by love, not hate for her man.

But that’s not how it seems right now.
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Old 21-04-11, 01:49 PM   #52
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Default Re: Curse in Verse - the poetry of HD

Honest, truthful and courageous. I'm sure what you write will ring true for many people.
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Old 21-04-11, 02:38 PM   #53
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Default Re: Curse in Verse - the poetry of HD

Trish - I dont know you and have only read your threads since logging on recently, and I think you are truly a remarkable woman, you were there for your husband until the bitter end, and totally devoted. You have sent me some kind words when initially I was struggling with my hubby not reconising his illness, and my frustration, and now about to publish a book of poetry, I admire you and only hope I can be as courageous as you in the coming years.
Take care xxxxxxxx
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Old 21-04-11, 05:44 PM   #54
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Default Re: Curse in Verse - the poetry of HD

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Originally Posted by DH View Post
Honest, truthful and courageous. I'm sure what you write will ring true for many people.
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Originally Posted by Cupcake View Post
Trish - I dont know you and have only read your threads since logging on recently, and I think you are truly a remarkable woman, you were there for your husband until the bitter end, and totally devoted. You have sent me some kind words when initially I was struggling with my hubby not recognising his illness, and my frustration, and now about to publish a book of poetry, I admire you and only hope I can be as courageous as you in the coming years.
Take care xxxxxxxx
Thank you DH, Thank you CC.

I'm so sorry things are at crisis point CC but I am sure once the meds are sorted you will get respite and both get your breath back ready to handle the illness better and stronger. You are doing a wonderful job in very difficult circumstances so give yourself some slack and some credit

I'm not remarkable or courageous, that accolade goes to my Hubby although I didn't always feel that way. Some people like to cook, some people like to sew, some people like decorating (I am CR#P at those things) but I do like reading and writing so it is just an extension of my hobby tied into therapy.

Everyone should note I knew about the possibility of HD from my 2nd date with Hubby and we based our lives together around him possibly getting it even to the point of us both planning our funerals.

He was in a state of unawareness (denial with no control over it) at points in the progression it is true but I didn't have half the stuff thrown at me that some of you guys have. I have also had a very good support network through my local authorities and my sister is a professional carer so I had heard a lot of stories about what I was agreeing to take on long before I had to hang up my killer heels and business suits.

I managed to pack in a lot before I became a carer and have some wonderful memories both before HD and through HD.
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Old 20-05-11, 11:02 PM   #55
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Default Re: Curse in Verse - the poetry of HD

Just to let everyone know Curse in Verse and Much More Worse is now available.

It appears on Amazon. I think it says 'out of stock' as they are printing copies upon order but I'm as new to this as the next person. Then again they could be out of stock where they have all been bought in 24 hours Yeah I know... Unlikely!

http://www.amazon.co.uk/gp/product/1...sr=8-3&seller=

If anyone gets a copy please let me know what you think and be honest please. Also happy to hear of the 'deliberate' mistakes. Spotted a few typos etc already but I'm not after any prizes
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Old 21-05-11, 11:04 AM   #56
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Ordered mine. I'll let you know when it arrives.
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Old 21-05-11, 01:59 PM   #57
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Default Re: Curse in Verse - the poetry of HD

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Ordered mine. I'll let you know when it arrives.
Cheers 'Fred'. I knew there was something else I meant to ask you.

What's with the Fred?
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Old 25-05-11, 07:58 AM   #58
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Default Re: Curse in Verse - the poetry of HD

I mention in another Thread I went to a Reception this week where Tony Baldry MP was speaking.

I managed to show and pass on copies of Curse in Verse to Tony and the following is quoted from an e-mail he sent me.

'Dear Trish,

Thank you very, very much for your book of poetry.

It must have been terrible to have lost Steve.

I will read your book and the poetry and I am very impressed at the quality of your writing. I am sure an extremely helpful way to assist others who are going through the tragedy of having a loved one suffering from Huntingdon’s Disease.'


I also got a chance to speak to Henry Smith MP (one of the MPs registered under our own APPG). He seemed a really committed MP to carers issues bless him. Let's hope he and other MPs get along to our own APPG in June.
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Old 25-05-11, 09:39 AM   #59
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Default Re: Curse in Verse - the poetry of HD

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I bought your book at the last AGM and it is good.
Thanks Hun,

You would have bought the old version. This one has an extra 30 poems and several other entries such as my excerpt from my Blog on when I sought professional therapy and Myrna's heartbreaking speech about Rikki and her struggles.

I also have a much wider introduction on many of the old ones.

You get a mention (not by name bless you as I know it's awkward with the secrecy thing).

Pages 21- 22

I quote below:

Within a short time a number of Members came along with stories of coming across HD by chance, This included one lady whose first cousin met and married a man with HD just as she had done so. However, the husbands were from different towns and totally unrelated.

Then there was her neighbour who had worked with a man who had HD, and then there was a young man attending the same school as her grandchild who also had HD in the family.
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Old 25-05-11, 10:15 AM   #60
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Default Re: Curse in Verse - the poetry of HD

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The version I bought is in a ring binder.

Thank you for the anonimity.
This one is a proper book jobby with 180 pages including the Section Title Pages. I don't think Amazon would have been happy to flog the comb bound version with about 30 pages lol

As for the anonimity, you are welcome. Sadly I had to take Hub's Brother's and Sister's name out of Hub's Eulogy which is also printed in there as they don't want anyone knowing about HD. I think I mentioned before somewhere in Messy Board that his sister was being consoled initially on the death of her younger brother where they thought the other brother had died. She's never told the work guys about her older brother!!!!
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