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Old 25-11-12, 03:22 PM   #161
Trish
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Default Re: Curse in Verse - the poetry of HD

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Originally Posted by Cupcake View Post
Glad u r ok . Good luck with the interview, let us know how it goes.

Usual Sat nite in our house martin giving me the silent treatment. What an existance we have !!!!!!

Another day tomorrow.

Take care xxxxx
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Originally Posted by angecornwall View Post
Good luck for your interview Trish :)) xx
Thanks CC and Angela

Didn't get the job I'm afraid. Actually I'm a bit relieved if I'm honest as it was the other side of London and the boss wasn't prepared for me to start before 10am so that I could get home at a more reasonable hour.

Thought I'd pop in today to share a link for my WordPress Blog Today would have been mine and Steve's 24th Wedding Anniversary and the BLOG features my latest YouTube experiment showing some wedding snaps to music.

Cheeky bump for the book too while I am at it Curse in Verse

As for the silent treatment CC...

I hope things are better at the moment. I have inserted below an extract from a blog during the times I was looking after Steve. He was at a later stage than Martin I believe but it made me laugh reading it back the other day. It was a sad time but I always tried to keep my sense of humour which kept me sane when all the sh#t was raining down:

Monday 29th Jan 2007

Had the first of our appointments today. A nice lady from our local Hospital Speech and Language Therapy Dept came over to assess Steve. She will make an appointment in a few weeks time for him to have a Videofluroscopic that will involve him swallowing a barium solution and track it's progress. There is already some degree of food and fluid getting into his lungs. She will also take us to see some of the aids we may need a bit further down the line when Steve can't communicate. There's a thing where we can record his saying a few key phrases and he will only have to press a button and the phrase will come out. Apparently if he doesn't want to use his own voice they can have a man at the hospital say the phrases we request, I'm wondering if I can persuade Jude Law or Sean Connery to help out with that one .. I also wonder if I can sneak it so that whenever he presses the phrase "where are you going?" it comes out with "Help yourself to my wallet and treat yourself to an afternoon out on me... I will be just fine here watching the telly". It's worth a try lol.
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Old 07-12-12, 09:33 PM   #162
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Default Re: Curse in Verse & TTFN

While I am in here

Time for another book plug

Curse in Verse - Amazon (Other bookshops are stocking)

Curse in Verse - Amazon Kindle

Also available from the HDA Book Shop

And here's a little poem wot I wrote a few Xmas's ago.

I was in Park House with Steve. Steve was watching the Robins and the Bunny Rabbits play in the grounds out the window. I miss Steve like crazy but am grateful we had the time we had together. Whilst it is too late for Steve, I still have a wish for a cure as would anyone who has witnessed this disease up close.

T’was Christmas Day on Message Board,
And cheers were heard all around,
A new Thread had appeared on site,
It read 'HD CURE FOUND!'


The Member's name was 'Santa Claus',
He'd opened up a letter,
The child who wrote it asked one thing,
'Please make my daddy better'


It touched his heart that this small child,
Was not like other boys,
He didn't want a list of things,
Like others wanting toys.


So Santa went to Tinkerbell,
Who got down off the tree,
And asked if she had any thoughts,
On how to cure HD.


Tinker said to Santa Claus,
You should have time to spare,
To smuggle out all research notes,
Whilst leaving presents there.


And having dashed around the world,
Removing files from shelves,
He emptied sacks for scrutiny,
By Tinker and the elves.


Combining their collective skills,
They sorted all the data,
And with a wave of wand or two,
The cure came minutes later.


Tinker ran to Santa Claus,
“Eureka” was her cry,
And Santa loaded up the sleigh,
With sacks all piled up high


He dashed around the world again,
Returning files all round,
But on each desk he left a file,
With what his team had found.


Now one stop left before return,
Much to Rudolph’s joy,
He paid a visit leaving toys,
For one unselfish boy.

Have as happy a Christmas as you can have! And remember... 2012 was a good year for research. 2013 will be even better
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Old 16-12-12, 08:37 PM   #163
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Default Re: Curse in Verse & TTFN

Hi Trish,

I just downloaded curse in verse on kindle and read it in one sitting. Thank you for writing it. Your strength and courage has really inspired me to do all I can to help raise awareness of this disease.

Laura
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Old 19-12-12, 10:01 AM   #164
Trish
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Default Re: Curse in Verse & TTFN

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Hi Trish,

I just downloaded curse in verse on kindle and read it in one sitting. Thank you for writing it. Your strength and courage has really inspired me to do all I can to help raise awareness of this disease.

Laura
Thank you Laura. I hope that it comes across any 'strength and courage' was driven by having such a lovely partner (Steve) and being in awe of HIS strength and courage. Also that of those in the HD Community be they HD positive; negative or carers and friends.

Good luck with your own projects
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Old 29-12-12, 09:52 AM   #165
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Default Re: Curse in Verse

I hope everyone has had a good a Christmas as it can be in HD Land and that you all have a Fab 2013

Here is to a Cure, or at least advancement in HD Treatment in 2013

The Researcher

Introduction

This poem touches on the hope that a cure is out there. But what about those who say no one would want to research into cures for HD anyway with it being an ‘orphan’ disease (a condition so rare it doesn’t make it financially viable for the drug industries to spend resources on)? I was one of those sceptical people, but several months after writing my poem I read some encouraging news.

‘HDBuzz’ (an on-line HD research news magazine, written by scientists in plain language), featured an article in March 2011. It was an interview with the Global Head for Neuroscience at Novartis. The article was encouraging in that it wrote:

‘We started by asking Bilbe why Novartis got into HD research when, financially, it might seem more sensible to work on more common brain diseases. Degenerative brain diseases like HD and Alzheimer’s, he answered, are all “chronic, they’re slow, they’re really tough”, which makes them expensive to study and difficult to treat. In addition, most such diseases strike at random: “We don’t really know who are the patients we’re going to treat” so developing drugs to prevent them is even harder. After a long time trying, the pharmaceutical industry has found working with degenerative brain diseases very frustrating, with millions of affected people and very few successes.

HD is different, says Bilbe. Because we know exactly what genetic mutation causes HD, “we believe we can beat the odds. We know who the patients are, and that makes the whole process of drug discovery and knowing how to test your drug, and which patients it should work in, a lot more predictable.”

Source: Interview with Graeme Bilbe, Global Head for Neuroscience at Novartis, written by Dr Ed Wild. HD Buzz

Sounds encouraging. Let’s just hope that when the day comes, the inequality of a postcode lottery on healthcare, as seen with drugs for other illnesses such as cancer, doesn’t mean treatment will be withheld due to inadequate funds and resources.


He’s spent the last 5 years or more,
Employee of a group,
Who’s paid to spook upon drug firms,
Just looking for a scoop.

There’s money to be made here;
The next big thing is due;
A cure for cancer, MS, AIDS,
Common colds and flu.

He sits among the files piled deep;
As far as eyes can see.
He holds a file and starts to weep;
The title is HD.

He’s never told his ruthless boss,
That money’s not his lure.
His wife is HD Positive,
And now they’ve found a cure!

Curse in Verse - Amazon (Other bookshops are stocking)

Curse in Verse - Amazon Kindle

Also available from the HDA Book Shop
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Old 31-12-12, 01:36 PM   #166
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Default Re: Curse in Verse - the poetry of HD

I've written a couple of poems myself - it seemed to help me to calm down, channelling all the emotion into a poem. Should warn you, they're a bit gloomy but....

1. A whole load of heartache

The day slits my eyelids,
Prods me to the window,
The grey sky spits on me
Again and again.
My soul closes up as
I remember the future -
A whole load of heartache, a whole lot of pain.

We move through the daytime
Alone but together,
Playing our parts in this
Now familiar game.
We don't want to think how
The future may change us
And bring us such heartache, a whole lot of pain.

So we open a bottle
To let loose our memories
That help to connect us
Together again.
Oh let's raise our glasses
To short-term release from
A whole load of heartache, a whole lot of pain.

---------------
2. Fifty-fifty

Fifty-fifty, half and half,
Heads you win and tails you lose.
If you were a gambling man
Are these the odds that you would choose?

Fifty-fifty, what to do?
To take or not to take the test.
To know or not to know your fate,
Who knows what would be the best?

Fifty-fifty, grab the hope,
Like a life-belt hold it tight,
Pray it takes you through the darkness
Of the anxious, sleep-starved night.
-------------------------------------
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Old 31-12-12, 02:25 PM   #167
Trish
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Default Re: Curse in Verse - the poetry of HD

Quote:
Originally Posted by Monica View Post
I've written a couple of poems myself - it seemed to help me to calm down, channelling all the emotion into a poem. Should warn you, they're a bit gloomy but....

1. A whole load of heartache

The day slits my eyelids,
Prods me to the window,
The grey sky spits on me
Again and again.
My soul closes up as
I remember the future -
A whole load of heartache, a whole lot of pain.

We move through the daytime
Alone but together,
Playing our parts in this
Now familiar game.
We don't want to think how
The future may change us
And bring us such heartache, a whole lot of pain.

So we open a bottle
To let loose our memories
That help to connect us
Together again.
Oh let's raise our glasses
To short-term release from
A whole load of heartache, a whole lot of pain.

---------------
2. Fifty-fifty

Fifty-fifty, half and half,
Heads you win and tails you lose.
If you were a gambling man
Are these the odds that you would choose?

Fifty-fifty, what to do?
To take or not to take the test.
To know or not to know your fate,
Who knows what would be the best?

Fifty-fifty, grab the hope,
Like a life-belt hold it tight,
Pray it takes you through the darkness
Of the anxious, sleep-starved night.
-------------------------------------
Your poems are really good Monica!

I make apologies for many of my poems being gloomy but qualify that by the fact that HD is not exactly a laugh a minute kind of disease.

Lines like '...I remember the future...' and '...grab the hope, Like a life-belt'...' very, VERY clever!
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Old 11-01-13, 12:46 PM   #168
Trish
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Default Re: Curse in Verse & TTFN

Time for another book plug

Curse in Verse - Amazon (Other bookshops are stocking)

And for all those who had Kindles in their Christmas Stockings
Curse in Verse - Amazon Kindle

Amazon Kindle Prime customers get to borrow it for free

And if you want to support the Had further and buy this/other books there is always the HDA Bookshop.
available from the HDA Book Shop


Talking of other books, I will post this one up in another Thread too but I thought I's flag up this book which I discovered whilst browsing Amazon for useful references. I confess I have not read it myself (too sad now it's too late for Steve) but I wish I had read this and had a chance to speak to Steve about it well before HD made it harder.

COMPLETE TUBE FEEDING
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Old 16-01-13, 07:46 PM   #169
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Default Re: Curse in Verse - the poetry of HD

tthiis is a ggood poem !!!!xx
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Old 19-01-13, 09:11 AM   #170
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Default Re: Curse in Verse - the poetry of HD

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tthiis is a ggood poem !!!!xx
Yes, Monica should add more and others can also contribute
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