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Old 25-02-12, 10:13 AM   #111
Trish
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Default Re: Curse in Verse - the poetry of HD

Cheeky bump for the book

The reviews are now coming in. Thank you so much to those of you who have taken time to submit.

I got an extra boost this week when no less than Jimmy Pollard mailed me to say he has put in a review. I burst into tears when I read it. His book was one of the inspirations behind my wanting to write about HD where he was such a wonderful advocate for those with the illness. I am really honoured he wrote such a lovely review.

As many of the Members here will know, I wasn't the greatest wife in the world for lots of reasons. However, I am so pleased that Jimmy reads the book as a love story as it was driven by love and respect for Steve where I saw just how strong and brave he had become in that last couple of years in particular.I didn't want his struggle and his fighting spirit to be forgotton.

Review:
Trish cared for her late husband Steve through his long course of Huntington's Disease. This book, however, is about so much more. It's a love story. The depth of love she has for her husband just oozes from the pages. It's about caring for anyone you love who has a progressive disease and/or progressing disability and dependence on others for care. That includes aging.

It's about caring love and providing care and all that it entails. Respect and admiration for the one in your care and the courage and endurance they have. It's about all the little challenges carers face that annoy, befuddle and sometimes bemuse them. It's about precious moments as well as mundane moments. It's a how-to manual for the carer to appreciate all they give and all they give up...and some tricks of the carer's trade.

It's both prose and poetry but the poems will stick with you. I suspect that anybody who reads it will be touched by how she captures moments that you never thought were shared by anyone else.

I could go on and on about how this book touched me. Suffice it to say, if you've got so far as to read this review, just buy the book. It is very unique in its ability to encourge you when life as a carer looks pretty discouraging. If you're facing a progressive disability yourself, I suspect you'll draw some reassurance from seeing how much love and care can be showered upon you.


http://www.amazon.com/product-review...20More%20Worse

UK book site:
http://www.amazon.co.uk/Curse-Verse-.../dp/1908105097
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Old 03-03-12, 09:13 AM   #112
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Default Re: Curse in Verse - the poetry of HD

Cheeky bump for the book

Paperback:

UK Amazon

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

US Amazon

http://www.amazon.com/Curse-Verse-Mu...=cm_cr_pr_pb_t


Kindle:

http://www.amazon.co.uk/Curse-Verse-...A3TVV12T0I6NSM

My blog on the book site

http://curseinverse.wordpress.com/20...ving-pictures/
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Old 10-03-12, 07:34 AM   #113
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Default Re: Curse in Verse - the poetry of HD

Another cheeky bump for the book

Paperback:

UK Amazon

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

US Amazon

http://www.amazon.com/Curse-Verse-Mu...=cm_cr_pr_pb_t


Kindle:

http://www.amazon.co.uk/Curse-Verse-...A3TVV12T0I6NSM

My blog on the book site

http://curseinverse.wordpress.com/20...ving-pictures/

Reviews below on Amazon UK Site:

'I thoroughly recommend this book if you want to really grasp the impact of a ruthless genetic brain disorder on individuals and families, and how people deal with the challenges it poses. The book is so well written with informative explanations and discussions heading up thoughtful, insightful, sometimes cutting, sometimes witty poetry.

This doesn't have to be read cover to cover in one go, but be careful if pushed for time- you might find you can't put it down. It can be dipped in to- I am doing that and I find after taking on board one short poem, I have so much to absorb from it and think about. It's deep and provocative, but the style is light, and very digestable, and enjoyable. It's definately not doom and gloom, it is most uplifting and sometimes hilarious--- I love 'The Dyno Rod'... so true, so funny.

It is about living with Huntington's disease, but it is about dealing with whatever life throws at you, even if actually, you have no personal connection to HD. If you do, this could be a great aid to get you through. Some tricky topics are faced--- Trish is not afraid to consider sticky issues such as animal experimentation; difficulties for individuals surrounding being gay; being HIV positive; problems with insurance... OK, enough from me. My favourite at the moment is 'The Magic of Music'... how friends find that from a deteriorating prematurely old frame, music draws out their old mate. Enjoy the read.'


' This is a wonderful book. It is amazing, emotional, insightful, thoughtful all at the same time. It gives a perspective into Huntington's Disease that no one else has been able to achieve. If you are a carer, read this book. If you are HD+, read this book. If you know someone that has Huntington's Disease, read this book. You will read, learn, cry and be amazed all at the same time.
Essential reading, and the bench mark of its genre. '


'Trish has put her whole heart and soul into this work which so vividly and compassionately describes in verse and prose the various stages, problems, heartaches and desperate hopes that are 'part and parcel' of this terrible disease.'

'
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Old 14-03-12, 03:04 PM   #114
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Default Re: Curse in Verse - the poetry of HD

My latest poem (with music and photos)

http://www.youtube.com/watch?v=NNi3HVPx7iM

PS That song is Rihanna and Calvin Harris just in case soemone thought OMG she's writing songs now too
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Old 14-03-12, 05:58 PM   #115
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Default Re: Curse in Verse - the poetry of HD

loved it trish i think every photo you and steve had a glass . like a little drink the two of you xx
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Old 14-03-12, 07:52 PM   #116
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Default Re: Curse in Verse - the poetry of HD

Quote:
Originally Posted by jo View Post
loved it trish i think every photo you and steve had a glass . like a little drink the two of you xx
Yep... def a theme going in our photos

Steve was very good at knowing his limit though (unlike me I hasten to add lol).

The poem at the beginning does try to convey the dynamics of our relationship changed over time. Steve's physical appearnace shows HD as if it is coming and going (his face fills out a bit when Enshakes and Creatine help during 2007/8). I hope it also shows he never lost his sense of fun.

The final snaps I wanted to have in as they are as he seems to be looking at the camera with his eyes talking. I don't think he looks happy or sad as such... Jusy saying "I am still here. Look at me and don't give up when I am gone. This is not the end of the fight against HD".
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Old 17-03-12, 10:26 AM   #117
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Default Re: Curse in Verse - the poetry of HD

Another cheeky bump for the book.
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Old 22-03-12, 12:54 AM   #118
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Default wwooooww

incredible things
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Old 02-04-12, 03:30 PM   #119
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Default Re: Curse in Verse - the poetry of HD

Cheeky bump for the book and also a couple of Youtube links with snaps of me and Hubs. I need to work more on my YouTube slideshow skills but I will be at Cannes Film festival one day

UK Paperback link

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

UK Kindle Link

http://www.amazon.co.uk/Curse-Verse-...A3TVV12T0I6NSM

USA link

http://www.amazon.com/Curse-Verse-Mu...mm_pap_title_0

Thank you again for the lovely reviews

Team Dainton (We found love in a 'Hopeless Place')

http://www.youtube.com/watch?v=NNi3HVPx7iM

in Your Eyes (Tribute to Steve's baby blues )

http://www.youtube.com/watch?v=LeCqdRNAZJI

PS I WILL work out how to do those linky shortcuts again
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Old 09-04-12, 03:30 PM   #120
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Default Re: Curse in Verse - the poetry of HD

Another cheeky bump for the book and also, talking of cheeks, I've been at the YouTube Slideshows again.

This time I have been super indulgent and put up snaps of me but if I dropped down dead tomorrow I think it would rather balance things out somewhat where I have posted up Steve's snaps and it's a bit of an eye opener.

UK Paperback link

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

UK Kindle Link

http://www.amazon.co.uk/Curse-Verse-...A3TVV12T0I6NSM

USA link

http://www.amazon.com/Curse-Verse-Mu...mm_pap_title_0

NEW VIDEO:

Moi

http://www.youtube.com/watch?v=bEBsGndzRNg

Us
Team Dainton (We found love in a 'Hopeless Place')

http://www.youtube.com/watch?v=NNi3HVPx7iM

Steve
in Your Eyes (Tribute to Steve's baby blues )

http://www.youtube.com/watch?v=LeCqdRNAZJI
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