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Old 20-10-09, 01:08 PM   #1
DH
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Default Curse in Verse - the poetry of HD

As many of you know, Trish (Formerly AKADT, nee DaintyTrish) is a full time carer for her husband who is mid stages HD. In between responding to his many needs she has been putting pen to paper - or at least, finger to keyboard - and produced her first volume of poetry based on her life with HD. In all there are some 41 poems in 6 sections that touch upon the many and varied aspects of HD covering different aspects of the illness from the points of view of the carer; sufferer; family and the public perception in general as she sees it.

Copies can be requested through the HDA priced £2.50 [+ post and packaging]. This was the price setby the HDA, but I personally think it's worth at least a fiver, probably more like a tenner. The price they're asking for barely covers the printing... Anyway, I shall leave that to your respective consciences.

Once hosting issues are sorted out there should be as e-book version as well.
Alternatively you can obtain a copy in MS Word format as an e-mail from Trish via her justgiving page: http://www.justgiving.com/Trish-Dainton/ Donations as suggested above.

An example poem is given below, with an intro by Trish:

"Those of you who knew me from my Messy Board days and my blog ( http://www.justgiving.com/daintytrish/ ) will know OCD is a big part of my hubby's HD. This was written as a reminder to me that I need to cut him some slack bless him!"

Quote:
The OCD Plea

Obsessive Compulsive Disorder,
Just another symptom we get.
The rituals we need, within our lives,
Particular needs to be met.

My partner just donít understand it,
She thinks that Iím being a pain.
Doesnít she care, that by placing that there,
I must start this all over again?

The socks go on after the trousers,
The shirt goes on after the shoes.
Itís not like sheíll die, if she doesnít know why,
This particular order I use.

So why does she still go on moaning?
Itís not her who has this HD.
The rituals are my way of coping,
So why canít she just let me be?


Trish (AKA DT/DaintyTrish)
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Old 30-10-09, 02:21 AM   #2
just1moreperson
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Default Re: Curse in Verse - the poetry of HD

They're very good, I like them
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Old 23-11-09, 12:24 PM   #3
hdauk
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Default Re: Curse in Verse - the poetry of HD

Quote:
Originally Posted by just1moreperson View Post
They're very good, I like them
Just to say a huge thank you to those of you who have donated so far to my Curse in Verse project, either via the JG Page or buying through the HDA.

I also wanted to flag up I've been looking at ways to get the message spread as widely as possible and I hit upon a site called Triond. It's one of those on-line publishing sites where they make a huge fortune out of selling ad space and contributors make peanuts (let's just say I wont be able to fund the HDA's costs out of it lol) but it's still a great way of getting access to a wider/international audience.

The link below takes you to just one of the poems but all 41 are uploaded now. Feel free to dip into the poems by clicking on my name above the poem which will take you into my page. Comments are also welcome as it's good to have other people's perspective on things. If, having viewed the poems, you would care to donate to my JG Page that would be cool too but don't feel obliged to. Even just clicking on the poems you are helping raise funds ( a bit like everyclick insofar as payments are based on views).

http://authspot.com/poetry/curse-in-...cheeky-monkey/

If you like the sound of Triond to submit articles yourself then why not give it a go? And no... I don't get commission for recommending

Hard copies of Curse in Verse are still available through the HDA with electronic (Word Version) copies through me as per the JG Page. http://www.justgiving.com/Trish-Dainton

Best wishes

Trish x "
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Old 08-01-10, 07:05 PM   #4
DH
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Default Re: Curse in Verse - the poetry of HD

Bumps from Trish

I thought Iíd take the opportunity to bump up this thread for the benefit of new members. Many thanks to DH for helping with posting.

The following links are to poems created as part of an awareness project started by DH with a view to using the London Underground for a poster campaign. Apart from wanting to raise awareness for those not familiar with HD itself, I hope some of the information in the description part is useful to/resonates with those in the HD community also.

I have split the poems into six groups and posted separately in here. All 41 poems are reproduced in an A4 size copied and comb-bound book being kindly sent out through the HDA price £2.50. http://www.hda.org.uk/shop/hda-books.php

For those of you with FaceBook, please feel free to add links if you want to help with raising the awareness of a particular poem or theme.

I hope this also encourages others to get creative and use sites like Triond. One of my poems is called ĎBig Brotherí. Iíve noticed the Ďhitsí have suddenly shot up on that one. I assume it must be from people searching for info on the latest celeb BB lol...


Theme 1 Ė MIND THE AWARENESS GAP

THE TEST

http://authspot.com/poetry/curse-in-verse-the-test/

THE SUFFERER

http://authspot.com/poetry/curse-in-verse-the-sufferer/

THE GENERATIONS

http://authspot.com/poetry/curse-in-...e-generations/

THE CARER

http://authspot.com/poetry/curse-in-verse-the-carer/

THE BABY

http://authspot.com/poetry/curse-in-verse-the-baby/

THE AWARENESS DREAM

http://authspot.com/poetry/curse-in-...areness-dream/

THE HOPE

http://authspot.com/poetry/curse-in-verse-the-hope/
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Old 08-01-10, 07:13 PM   #5
DH
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Default Re: Curse in Verse - the poetry of HD

Theme 2 Ė THE APPLIANCE OF SCIENCE

THE FIGHTER

http://authspot.com/poetry/curse-in-verse-the-fighter/

THE LAB RAT

http://authspot.com/poetry/curse-in-verse-the-lab-rat/

THE RESEARCHER

http://authspot.com/poetry/curse-in-...he-researcher/

THE COCKTAIL

http://authspot.com/poetry/curse-in-verse-the-cocktail/

THE HD + OPTIMIST

http://authspot.com/poetry/curse-in-...e-hd-optimist/
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Old 08-01-10, 07:15 PM   #6
DH
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Default Re: Curse in Verse - the poetry of HD

Theme 3 Ė BEFORE THE STORM

THE DENIAL (SOFT)

http://authspot.com/poetry/curse-in-...e-denial-soft/

THE DENIAL (HARD)

http://authspot.com/poetry/curse-in-...e-denial-hard/

THE TEENAGERíS AWAKENING

http://authspot.com/poetry/curse-in-...ers-awakening/

THE TEACHER

http://authspot.com/poetry/curse-in-verse-the-teacher/

THE DRIVER

http://authspot.com/poetry/curse-in-verse-the-driver/

THE PANIC BUTTON

http://authspot.com/poetry/curse-in-...-panic-button/

THE BUCKET LIST

http://authspot.com/poetry/curse-in-...e-bucket-list/
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Old 12-10-11, 01:10 PM   #7
nimmie
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Default Re: Curse in Verse - the poetry of HD

i have a gene, it controls what i do
how i behave, what i think of you,
its hidden inside, no one can see,
my doctor and family know, its not the real me,
mostly i look normal, whatever that may be?
but when the mood swings take over,
my forgetfull anger becomes the person that you see,
i see you look and think, thats not how to behave,
is he drunk as he walks, but to walk out is so brave,
it takes a lot to deal with, the symptoms that i have got,
and untill you realise, think, before you open your gob,
because yes i have an illness, its called, HUNTINGTONS CHOREA,
it affects my body, my brain, but my heart is still here,
and yes it brakes, everytime you surmise,
that hes going mad?, oh what a surprise?,
when you see me out, dont stare too long,
because i have an illness, thats all that is wrong,
and yes i will get worse, it will lead to my death!!,
but treat me with understanding, because i want to live, untill my last breath,
with the diginity i deserve, and with the love that i give,
so think twice when you look. and let me live my life as i have the right to live.

take care lynn x heres my poem, hope it helps someone x
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Old 12-10-11, 02:08 PM   #8
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Default Re: Curse in Verse - the poetry of HD

That's really good and very thoughtful xxx

Would you mind if I sent this to my local neuro drop in centre to use on their facebook page?
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Old 12-10-11, 07:01 PM   #9
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Default Re: Curse in Verse - the poetry of HD

Hi Nimmie

I think you have summed the HD up excellently in your poem, well done, it is very good, makes me want to cry though, such a sad situation, most of us on here can relate to.

Take carexxx
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Old 14-10-11, 09:13 AM   #10
nimmie
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Default Re: Curse in Verse - the poetry of HD

Quote:
Originally Posted by Cupcake View Post
Hi Nimmie

I think you have summed the HD up excellently in your poem, well done, it is very good, makes me want to cry though, such a sad situation, most of us on here can relate to.

Take carexxx
thanks for reading it, take care x
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