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Old 27-08-14, 08:16 PM   #211
banda
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Default Re: Curse in Verse - the poetry of HD

On my kindle....looking forward to having a read.....
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Old 28-08-14, 06:31 AM   #212
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Default Re: Curse in Verse - the poetry of HD

Took the kindle to bed with me and began reading .... The book is so much more than a collection of poems.....the commentary is wonderful and so illuminating for those of us new to HD. Thanks for re-posting the info. Whatever happened to that cross party committee then and what did it achieve?
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Old 18-11-14, 11:11 AM   #213
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Default Re: Curse in Verse - the poetry of HD

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Took the kindle to bed with me and began reading .... The book is so much more than a collection of poems.....the commentary is wonderful and so illuminating for those of us new to HD. Thanks for re-posting the info. Whatever happened to that cross party committee then and what did it achieve?
Hi Banda.

Thanks for buying the book and saying such kind things. Don't suppose you could put a review up on Kindle says she being cheeky

The APPG still exists and we seem to be finally getting sight of Minutes

http://hda.org.uk/news/242

Still so much more connection needed with the powers that be.

I think I'm more disappointed at the lack of publicity from our #Patrons' of late. When I did my poem - The Patrons - I had high hopes for Shane and Tony to be seen on various Quiz Shows raising awareness and funds but they seem to always opt for other (dare I say more trendy) charities.

The Patrons

Introduction

The Huntington's Disease Association was founded in 1971 as a self help group with 76 members. It was then known as the Association to Combat Huntington's Chorea. At that time families lived in complete isolation, unaware of the extent of the disease in the community and stigmatised by its hereditary nature.

In 1997, The Countess of Harewood kindly gave her patronage to the Association. The Countess came into contact with the HDA through her daughter-in-law who was ‘at risk’. Fortunately her daughter-in-law tested negative. To have Royal Patronage became a tremendous boost to the plight of those with HD and their families and we owe a huge debt of gratitude to the Countess.

In 2009 the HDA was able to announce another boost to raising the profile of HD by adding Tony Hadley of Spandau Ballet fame, and Shane Richie of Eastenders fame, as Patrons.

Tony’s connection with HD is cited as having seen a relative die from HD and having first-hand knowledge of the disease.

Shane is cited as becoming involved where he came to learn about the disease when doing research for a storyline in Eastenders. His research made him come to realise what a “tough time families of people with Huntington’s disease have”.

Again, we are truly indebted to Tony and Shane for becoming HDA Patrons.


From single voice, a cry for help, someone lends a hand.
Before too long another reaches out to help them stand.
Once standing up on sinking sand they ask for solid ground,
To stop them sinking down again they need a platform sound.

The lucky ones find platform comes, from those who want to share,
Their luck in life when looking at the helpless standing there.
Foundations now begin to form, upon which strong things grow,
And others start to notice them, where Patronage will show.

With Patrons comes awareness, with them comes attention,
A worthy cause once never heard, will now receive a mention.
The media so fickle will begin to look and see,
If they think there is a Royal link or spot ‘celebrity’

And the single voice that cried for help is stood on shoulders high;
No longer going under while their hands reach for the sky.
The busy Patrons give their time, as much as they can spare,
Their names alone are priceless gifts to show how much they care.
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Old 18-11-14, 11:18 AM   #214
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Default Re: Curse in Verse - the poetry of HD

While I'm in here a cheeky plug for my book, Curse in Verse and Much More Worse

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


Or HDA Shop (scroll down for books and do buy Hurry Up and Wait and/or Selfish Pig's Guide if you have a few spare pennys because they really helped me cope when looking after Steve.
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Old 18-11-14, 02:02 PM   #215
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Default Re: Curse in Verse - the poetry of HD

Hi Trish

I am new to the board but have been reading past threads including your own and your blog. Naturally I am so sorry about the loss of your beloved Husband. And, it's nice to have you back to be able to tell you I have loved reading the poems posted on here by you in the past - some of them so clever/funny even though they are so sad! I know you understand what I mean by that, we have to try and find a smile somewhere, somehow for comfort - laugh in the face of adversity and all that.

I have just gone through your book preview and highly recommend others so to do....Christmas is looming, add it to your gift lists folks!! We gotta stick together.
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Old 18-11-14, 05:31 PM   #216
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Default Re: Curse in Verse - the poetry of HD

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Hi Trish

I am new to the board but have been reading past threads including your own and your blog. Naturally I am so sorry about the loss of your beloved Husband. And, it's nice to have you back to be able to tell you I have loved reading the poems posted on here by you in the past - some of them so clever/funny even though they are so sad! I know you understand what I mean by that, we have to try and find a smile somewhere, somehow for comfort - laugh in the face of adversity and all that.

I have just gone through your book preview and highly recommend others so to do....Christmas is looming, add it to your gift lists folks!! We gotta stick together.
Cheers Shiaz
[Can you see what I did there?]

Glad you saw that I have tried to put in a bit of humour too. Defo a case of if we didn't laugh we would cry.

Have you read "The Selfish Pig's Guide to caring". Hugh's wife has/d HD and his book is brilliant where he puts in liberal doses of humour. A must read for any carer.

Great that you also mention the Blog. I assume that we are talking the one below? Gonna be doing a new entry next week for what would have been mine and Steve's 26th Anniversay. In the meantime, here's an 8 min Youtube of snaps of me and Steve. Not expecting anyone to watch until the end lol but once I started adding snaps I couldn't stop

http://curseinverse.wordpress.com/

https://www.youtube.com/watch?v=yjE3OVcVulo
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Old 19-11-14, 12:13 PM   #217
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Default Re: Curse in Verse - the poetry of HD

Howdi Partner

Yeah, I know you're partial to getting your five a day fruit intake in the form of grapes!!! I prefer black ones myself.

I've heard so many recommendations about the Selfish Pig I'm gonna get it, also Hurry Up and Wait.

Just wanted to say I have just watched your little video clip show from start to finish (loved the floosy shot 41 secs in!). Started off smiling, went thro to crying and feeling I'm not gonna be strong enough to do this. I have the utmost admiration for you, I can't begin to tell you.

One thing I noticed, is the change in Steve's face. Not just the change of expression but the decrease in 'fat'. I only mention it because I see the same look on my own Hubby's face, it's as though he doesn't laugh with his face now, the expressions aren't there and his skin is all thin, like he's wasting away but his weight stays the same. He's becoming like a shell, a ghost of a man, going through the motions, ambling round, but he's not there, he's fading away. I'm not explaining myself well here but I think you'll know what I mean. It's just so sad and frightening and distressing. I wonder what's really going on in his head.

Anyway, on a more upbeat note, just wanted to say your'e wonderful, simply marvellous darling. So nice to have you back.
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Old 19-11-14, 02:36 PM   #218
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Default Re: Curse in Verse - the poetry of HD

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Howdi Partner

Yeah, I know you're partial to getting your five a day fruit intake in the form of grapes!!! I prefer black ones myself.

I've heard so many recommendations about the Selfish Pig I'm gonna get it, also Hurry Up and Wait.

Just wanted to say I have just watched your little video clip show from start to finish (loved the floosy shot 41 secs in!). Started off smiling, went thro to crying and feeling I'm not gonna be strong enough to do this. I have the utmost admiration for you, I can't begin to tell you.

One thing I noticed, is the change in Steve's face. Not just the change of expression but the decrease in 'fat'. I only mention it because I see the same look on my own Hubby's face, it's as though he doesn't laugh with his face now, the expressions aren't there and his skin is all thin, like he's wasting away but his weight stays the same. He's becoming like a shell, a ghost of a man, going through the motions, ambling round, but he's not there, he's fading away. I'm not explaining myself well here but I think you'll know what I mean. It's just so sad and frightening and distressing. I wonder what's really going on in his head.

Anyway, on a more upbeat note, just wanted to say your'e wonderful, simply marvellous darling. So nice to have you back.
Thank you!

I used to do floosy so well

Do get those books, you won't be disappointed.

I didn't notice Steve's face as much until I would start getting back snaps from our trips etc and OMG it would hit me hard.

He lost a lot of weight quickly and started to look like an old man. Then I started him on a very low dose of Creatine and that, coupled with our being able to get a Dietitian involved, helped to pad his face out a bit better. Although... as with everything HD... every high was followed by a low.

I have several videos of photos on my Trish737 page. Mostly the same snaps recycled to different music but the one I have linked to below has a cracking snap of Steve in May 2006 where his joy of life and twinkle in the eyes seems to come back 'HD won't break Steve's spirit'. We are hurtling down the road in a Toboggan - Example Video here. https://www.youtube.com/watch?v=GN8eY3qIVyU

The end snaps his mouth and face are at the stage where the muscles have weakened to the point that a smile is harder to get from him. There were a few occasions even at very late stage he would smile or have an actual laugh that would simply fill me with joy and heartbreak at the same time. https://www.youtube.com/watch?v=NNi3HVPx7iM

HD is heartbreaking but it makes us even more aware of, and treasure, those glimpses of normality and joy. There aren't many in the scheme of things as a 24/7/carer but there's still going to be some along the way
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Old 20-11-14, 02:22 AM   #219
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Default Re: Curse in Verse - the poetry of HD

Ah Trish

You've gone and done it again! Joy and smiles at the crazy toboggan ride - is that really mean't to be fun!! danger - danger... and then that good old floosy pic in 1993 to tears at seeing just how much Steve changed in a few years - and yeah there's that fixed/expressionless look I was trying to explain - it's to do with the loss of fat and muscle wastage.

It seems that HD affects people in so many different ways and each has symptoms that are more pronounced/or less than another sufferer. It is this uncertainty of the path that is so confusing and I think a big part of why it has taken so long for us to get a diagnosis - Hubs has had all sorts of wrong ones with no one listening to me - the person who has been with him 24/7 and just knew something was drastically amiss. It makes me want to scream and shout and run amok with rage and fury - I know it won't/wouldn't change anything long run but the past few years could have been less traumatic given that Hubs really displays so many of the behavioural symptoms.

Life's a bitch. It just ain't fair.
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Old 23-11-14, 09:37 AM   #220
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Default Re: Curse in Verse - the poetry of HD

Yep... if only they would listen to the person who has been witness to all the ins and outs of what has been happening and take seriously the concerns

The sad thing is this though....

I was aware it was making ME the enemy, not the System. As if I was seeing things and telling tales out of school as it were. Made me want to crawl back under the cosy duvet called denial too
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