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Old 18-05-15, 08:52 PM   #251
banda
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Default Re: Curse in Verse - the poetry of HD

Thank you for your posts last week...I looked for them every day and if a few more people are now aware then you did fab!!
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Old 20-05-15, 11:08 AM   #252
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Default Re: Curse in Verse - the poetry of HD

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Thank you for your posts last week...I looked for them every day and if a few more people are now aware then you did fab!!
Thanks Banda. Means a lot that people took the time to look at my efforts and, even if by osmosis, more of the general public will be aware that HD stands for more than just High Definition.

The Scottish HD Assoc (SHA) did a tweet today with the following article. They really use Twitter to the Max!

http://thirdforcenews.org.uk/tfn-new...es-on-the-rise

I can't help but wonder if, with Nicola Sturgeon now representing Scotland in House of Commons and having more of a mandate to drive through matters of Scottish importance, if the SHA may be able to get more notice? That must help the rest of the UK too for HD matters.
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Old 30-05-15, 09:55 AM   #253
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Default Re: Curse in Verse - the poetry of HD

Morning all

Hope everyone is okay as far as people can be in the world that is Huntington's.

Just another cheeky plug for the book

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

If you have already purchased, I'd be ever so grateful for a review on the website you purchased from if that's an option.

If you purchased through the HDA Shop a review in here would be cool too. https://hda.org.uk/shop

Good or bad, all feedback is useful.

T x
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Old 20-06-15, 08:08 AM   #254
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Morning all

Hope everyone is okay as far as people can be in the world that is Huntington's.

Just another cheeky plug for the book

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

If you have already purchased, I'd be ever so grateful for a review on the website you purchased from if that's an option.

If you purchased through the HDA Shop a review in here would be cool too. https://hda.org.uk/shop

Good or bad, all feedback is useful.

T x
Morning all. Quick cheeky plug for the book again but I also thought I'd post up the text of The Introduction just in case anyone was interested in reading about why I did the book. Also, on the next post, I hope to put up the contents list.

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

Introduction to this book

In 2005 my husband, Steve, was diagnosed with Huntington’s disease (HD). I was aware from the very beginning of our relationship that my husband had a 50% chance of inheriting HD. His father was in mid to late stages of the illness when we met and, if passed on to my husband, our children would also have a 50% chance of inheriting. Our life choices were based on the very real threat of HD.

Denial is a common thing with HD and Steve was clearly in denial, (or should that be ‘unawareness?) for several years before his actual diagnosis. I guess I was as much in denial as he was. Facing up to the devastation it brings is never easy, especially when you have already watched it destroy loved ones. Steve’s father was one of eight children, with six of the children inheriting the disease from their father.

As the wife of someone who suffered from HD, and his full-time carer until his death in January 2011, I have been an active Member of the Huntington’s Disease Association of England and Wales (HDA) and its Message Board.

Curse in Verse and Much More Worse was borne out of an awareness exercise for HD and the HDA itself. The original book was entitled simply ‘Curse in Verse’ and contained 41 poems in all. More detail on the original concept is given in the Introduction to Section One – Mind the Awareness Gap!

The HDA currently print off and distribute Curse in Verse and have helped me in promoting it. Grateful though I am to the HDA, I since found myself working on more and more poems and wanting to spread my wings beyond the constraints of being tied to the HDA where using their resources and logo. Having printed a self-published book,

Many of the new poems in here, especially in the later Sections, may be viewed as provocative or even controversial in their subject matter. Being mindful of the HDA’s position, I took the decision to self-publish this work which has been unauthorised.

A number of books, goods, and services are mentioned by name in this book. Please note I have received no payments or inducements by any person, supplier, or organisation to feature them.

This latest version containing around seventy poems, including most of the original 41, does not set out in any way to work in opposition to the HDA or its Members. I truly hope people can see I aim to compliment them in every sense of the word and, by donating all eventual profit from the sale of this book, ultimately I hope to raise funds as well as awareness.

Many of the subject matters I have covered in this book will no doubt prompt the reader to search out further information. The HDA provide a number of useful Fact Sheets which are available through their office or can be downloaded from the HDA Website www.hda.org.uk

At the time of writing the original book along with many of the poems for this version, Steve was in what I would term mid to late stage into progression. Sadly Steve died whilst I was working on Curse in Verse and Much More Worse. He died on January 27th 2011. It was just a few months before he would have reached the age of fifty, and a few months after our twenty second wedding anniversary. The poem on the dedication page was written for his funeral.

My husband was weakened physically and mentally by the disease and, as with so many other sufferers, pneumonia took hold where his body was so weak. He was a very brave and proud man and accepted his lot with grace and dignity. After his death I decided I would continue work on this book in his memory.

It stands to reason that this book is more likely to attract those with a connection to HD. However, being the disease that it is, I’d like to think my writings can touch on any number of diseases and the role of being a carer in general.

I remember the first time I read the John Harding book ‘What we did on our holiday’. The book was centrally based on a family coping with Parkinson’s disease but in many ways he was describing a family which could have been living with Huntington’s disease. I connected with his characters profoundly.

I’m sure that it is no accident that Hugh Marriott’s book ‘The Selfish Pig’s Guide to Caring’ was able to reach out to carers in all walks of life. I dare say Hugh’s experience in caring for someone with HD played a big part in his being able to identify with all manner of frustrations and circumstances given the complexity of the disease.

A big difference between this book and those of John Harding and Hugh Marriott (apart from them being brilliant writers whereas I am an amateur with no talent that is) is their wonderful gift of mixing humour and pathos. I apologise in advance for the lack of humour portrayed in this book.

This book is made up of eight Sections. Sections one to seven contain poems grouped within a theme. I have written Introductions to the Sections and to the poems themselves. The length of the Introductions varies greatly. Some of the subject matters were simply more close to my heart resulting in either being easier for me to elaborate on or, on the other side of the coin, sometimes too painful to.

Section eight does not contain poetry. The final Section is formed out of various writing exercises I have used for therapy/fundraising/tributes. I have also included a story written by another HDA Message Board Member about her daughter who had Juvenile Huntington’s disease (JHD).

In the case of the Message Board being a direct source of work or inspiration, unless requested otherwise, I have used the persons’ Message Board Username within the appropriate piece to attribute them. Permission prior to using was sought and my intention to publish the book has been well documented on the Message Board itself.

In terms of the situations within the poems themselves, any direct similarities to actual Members of the Message Board are purely coincidental. Where not arising from my own personal experience and outlined in the Introduction to the poem, the poems have been formed and inspired out of the thousands of posts I have read over the last few years covering hundreds of Members’ plights. They are therefore an amalgam of stories condensed into a few short lines.

Including myself in this, it stands to reason that those who join and open their hearts on the Message Board are initially there for the same reason. They have reached the point where they are crying out for help and needing to know they are not alone. In view of this, and having subjected myself to hours and hours of pouring through posts in a bid to try capturing the essence of a particular dilemma, it’s understandable my poems are more likely to be sad rather than uplifting. It also therefore follows not all cases of HD are as bleak as this book may portray, and not all elements of the disease will manifest themselves within the sufferer or those looking after them.

Because of the nature of the disease, covering physical; mental; emotional; and cognitive areas of ones being, I will not have been able to represent all of the facets. It is important to state, whilst I have never set out to misrepresent HD, the context of what I have been basing my poetic creativity on will always have been swayed by my own experience of how it manifested itself in my husband and what appears to be the bleakness of the disease. Having said that... I am aware that compared to many carers, my own experience has been a walk in the park.

Finally, please note, apart from personal experience in coping with being a carer for someone with HD, I have absolutely no medical training; care training; or professional background when referring to medical and professional care giving information. I simply have a questioning mind and have used reading matter and the internet to help guide me. In this respect, whatever is stated in this book is simply based on my own limited research and the views of others and in no way provides a substitute for professional guidance.



* Posts submitted on the Message Board are already in the public domain. HDA or Board membership is not required to view, only to participate and submit entries.
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Old 20-06-15, 08:10 AM   #255
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List of Contents as previously mention:

Contents

Acknowledgements

Introduction to this book


Section 1- Mind the Awareness Gap!

Introduction to this Section

The Poems:

The Test
The Sufferer
The Generations
The Carer
The Baby
The Awareness Dream
The Hope
The Patrons
The Prevalence
The HD APPG

Section 2 - The Appliance of Science

Introduction to this Section

The Poems:

The HD+ Optimist
The Fighter
The Guinea Pig
The Lab Rat
The Researcher
The Cocktail
The Videofluoroscopy
The Terminology
The Name Game
The Gay

Section 3 - Before the Storm

Introduction to this Section

The Poems:

The Owl and the Ostrich
The Check-ups
The Denial
The Unawareness
The Panic Button
The Innocent Answer
The Teacher
The Teenager’s Awakening
The Driver
The Bucket List
Section 4 – Family Values

Introduction to this Section

The Poems:

The Lost Generation
The Sibling
The Survivor’s Guilt
The Grandparent
The Infrequent Daughter
The Quality Of Life
The Ripple Effect
The Normality
The Touching Moments
The Best is Yet to Be

Section 5 - Adapt and Survive!

Introduction to this Section

The Poems:

The OCD Plea
The Stuck Record
The Impatient Patient
The Reader
The Rushed Hush
The Magic Of Music
The Tooth Fairy
The Hunger
The Corrupted Computer
The Brothers in Arms

Section 6 - Low Society

Introduction to this Section

The Poems:

The Insurance Salesman
The HD Shopping Trolley
‘Big Brother’
The Wheelchair Outing
The Help
The Prescription
The Benefit Cheat
The Return to Work Interview
The Boss (Part 1)
The Boss (Part 2)

Section 7 - The Dark Side of the Prune

Introduction to this Section

The Poems:

The Dyno Rod
The Flow Chart
The ENT Theory
The Tug of Love
The Jealousy
The Night Fighter
The Bedtime Prayer
Cheating Life
The Pillow fight
The Grief

Section 8 - The Caring of Angels

Introduction to this Section

TIME to Change
One scoop of patronisation or two?
Breaking Point
Rikki’s Story
The Eulogy
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Old 30-06-15, 11:24 PM   #256
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Default Re: Curse in Verse - the poetry of HD

My brave daughter, who hates heights is doing a skydive for the HDA on 23rd July...I know there have been so many worthy events to sponsor, but any extra pennies would be really appreciated. Here is a link to her Just Giving page, We also have some in the pot who preferred to just give cash. So proud of my daughter.

https://www.justgiving.com/Natalie-P...fb_ref=Default
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Old 04-07-15, 07:20 AM   #257
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My brave daughter, who hates heights is doing a skydive for the HDA on 23rd July...I know there have been so many worthy events to sponsor, but any extra pennies would be really appreciated. Here is a link to her Just Giving page, We also have some in the pot who preferred to just give cash. So proud of my daughter.

https://www.justgiving.com/Natalie-P...fb_ref=Default
Well done to your brave daughter for wanting to take up the challenge! She's amazing given her fear of heights etc. There's a few people I know who have done it and wanted to do it again but you wouldn't get me doing it! I prefer to get others (The Crystal Palace Football Team's efforts) to help me with my charity Page

Basically I add £2 per CPFC League game goal; £5 per Cup Tie goal and £10 per Cup Final goal. Others also add donations at times.
https://www.justgiving.com/StephenDainton
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Old 05-07-15, 11:54 PM   #258
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Well done to your brave daughter for wanting to take up the challenge! She's amazing given her fear of heights etc. There's a few people I know who have done it and wanted to do it again but you wouldn't get me doing it! I prefer to get others (The Crystal Palace Football Team's efforts) to help me with my charity Page

Basically I add £2 per CPFC League game goal; £5 per Cup Tie goal and £10 per Cup Final goal. Others also add donations at times.
https://www.justgiving.com/StephenDainton
Thanks Trish, I hope you are keeping well.

I couldn't do it, but she wanted to really challenge herself.

I just really wanted to say sorry for posting this on your thread...I really don't know how it happened as I started a new thread... Technology eh! Best wishes and I love your poetry. x
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Old 06-07-15, 09:02 AM   #259
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Thanks Trish, I hope you are keeping well.

I couldn't do it, but she wanted to really challenge herself.

I just really wanted to say sorry for posting this on your thread...I really don't know how it happened as I started a new thread... Technology eh! Best wishes and I love your poetry. x
Hi Melody

I'm keeping well thank you.

No need to apologise. Absolutely no problem your posting on this thread. If anything, at least it gives it a 'bump' up the page

She's now at 77% of her target (at time of checking for this post) and it's looking good for the target being reached by the 23rd which must be encouraging.

https://www.justgiving.com/Natalie-P...fb_ref=Default
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Old 30-08-15, 10:44 AM   #260
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Default Re: Curse in Verse - the poetry of HD

Hi all

Hope all are doing as well as can be expected.

Thought I'd pop in to plug the book again

CLICK HERE

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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