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Fundraising, events, summer camps, support groups Tell us about your UK fundraising activities and local meetings

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Old 20-08-11, 02:06 PM   #61
Trish
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Default Re: Curse in Verse - the poetry of HD

Apart from wanting to plug the book again I just thought I'd mention Dr Jane Paulsen got back to me this week to say congratulations and offer support.

I feature Dr Jane's work on page 55 in my poem 'The Unawareness'.

The poem is about needing to think about the mental capacity of our loved ones who we see as being in 'denial'.

In essence, Dr Paulsen raises the possibility that if we distinguish between someone being knowingly in denial; as opposed to not being aware in the first place, we may treat them differently.

There's one thing accussing those with HD of knowing there is something wrong and not addressing it/wanting to admit. It's quite another if the brain has changed to the point where the person cannot interpret behaviour or physical attributes as not being what society would tern 'normal' due to physical changes in their brains wiping out years of habit; comprehension; teaching etc.

http://www.amazon.co.uk/Curse-Verse-.../dp/1908105097

Dr Paulsen is based at University of Iowa

http://www.uihealthcare.com/depts/hu...nepaulsen.html
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Old 24-09-11, 11:48 AM   #62
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Default Re: Curse in Verse - the poetry of HD

Thanks this week to everyone who has complimented my poetry; old poems nd newly composed for Messy Board of late.

The HDA have kindly added the book to their resources by putting a link to it on the HDA: Fact sheets, booklets & forms part of the site:

http://www.hda.org.uk/hda/fact-sheets.html

It sits on its own under 'Other Publications' which is not surprising given I wouldn't have a clue what it comes under either

I am also arrranging a supply so that the HDA can stock and sell the book direct either through Head Office or at forthcoming events.
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Old 03-10-11, 11:23 PM   #63
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Default Re: Curse in Verse - the poetry of HD

I've booked my train ticket today (for that read train; London Underground; Bus and another Bus each way ) and am planning to attend the Albury Family Day on 12th November to help 'person' the HDA Book Stand.

I'll be selling my book and signing at no extra charge but there will be other books there too to look at and order. It's an early Christmas Fayre so if you have anyone you don't like and need to buy them an Xmas Prezzy you could always buy them my book

Hope to see some of you guys there

Albury Village Hall, Albury, Hertfordshire, SG11 2HZ
(just off the A120 near Bishops Stortford)
On

Saturday 12th November 2011
11am onwards until 5pm


Entry cost including lunch: Adults £7, Children £4 (age 2-18 yrs) Family £20
(2 adults/2 children)
Or Entry excluding lunch: Adults £2, Children £1 (age 2-18 yrs) Family £5 (2 adults/2 children)

http://www.hda.org.uk/hda/events.html

http://www.amazon.co.uk/Curse-Verse-.../dp/1908105097
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Old 08-10-11, 09:54 AM   #64
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Default Re: Curse in Verse - the poetry of HD

Just a little bump on a Saturday morning as the actress said to the Bishop

http://www.amazon.co.uk/gp/product/1...UTF8&me&seller
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Old 12-10-11, 01:10 PM   #65
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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   #66
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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   #67
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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, 09:12 AM   #68
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Default Re: Curse in Verse - the poetry of HD

Quote:
Originally Posted by Blondie View Post
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?
thats fine, only pleased that people like it, i have family members with hd and some that have passed so any good that can come from this is fine take care lynn x
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Old 14-10-11, 09:13 AM   #69
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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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Old 15-10-11, 11:18 AM   #70
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Default Re: Curse in Verse - the poetry of HD

Quote:
Originally Posted by nimmie View Post
thanks for reading it, take care x
Thank you for posting up your poem Nimmie.
It's really, really good!
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