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Old 19-01-13, 09:16 AM   #171
Trish
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Default Re: Curse in Verse & TTFN

If I ever win the Premium Bonds (as in more than £25 per month) I may one day crack on with another book of poems hopefully incorporating those by other contributors. So much talent out there

In the meantime I'm afraid we are stuck with this book

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
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Old 19-01-13, 07:18 PM   #172
lolly
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Default Re: Curse in Verse & TTFN

Quote:
Originally Posted by Trish View Post
If I ever win the Premium Bonds (as in more than £25 per month) I may one day crack on with another book of poems hopefully incorporating those by other contributors. So much talent out there

In the meantime I'm afraid we are stuck with this book

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
I think you should - I love your poems. I keep meaning to order one of your books - that is my priority for this week :-) I like how you manage to nail exactly our thoughts. x
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Old 21-01-13, 02:53 AM   #173
Twiglet
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Default Re: Curse in Verse & TTFN

Quote:
Originally Posted by Trish View Post
If I ever win the Premium Bonds (as in more than £25 per month) I may one day crack on with another book of poems hopefully incorporating those by other contributors. So much talent out there

In the meantime I'm afraid we are stuck with this book

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
Hi Trish, Remember me, I have just ordered your book from Amazon and expect to receive it on Wednesday. From what I have read on Amazon it promises to be very uplifting and I look forward to reading it.
Twiglet
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Old 21-01-13, 10:58 AM   #174
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Default Re: Curse in Verse & TTFN

Quote:
Originally Posted by lolly View Post
I think you should - I love your poems. I keep meaning to order one of your books - that is my priority for this week :-) I like how you manage to nail exactly our thoughts. x
Thanks Lorraine

I'm pleased you feel that way from what you have read in here so far Let's just hope you still feel that way by the end of the book
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Old 21-01-13, 11:09 AM   #175
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Default Re: Curse in Verse & TTFN

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Originally Posted by Twiglet View Post
Hi Trish, Remember me, I have just ordered your book from Amazon and expect to receive it on Wednesday. From what I have read on Amazon it promises to be very uplifting and I look forward to reading it.
Twiglet
Twigggggsssssssssssssssssss

Course I remember you! So good to read about things coming together for you and Alan by way of support (I'll comment separately on the Thread).

I hope you find the book uplifting. I'm afraid it can be grim in places and my experiences with Steve finally getting into a wheelchair wasn't as uplifting as yours and Alan's. There was an unfortunate episode with the Restaurant owner treating him like a deaf and dumb mute bless him I did a poem on it and extracted a blog article with the background. When we got the right wheelchair though, and Steve became wheelchair bound (long story), it did have its up-side where we were able to get out with more confidence and found a lovely place to take holidays.
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Old 26-01-13, 03:20 PM   #176
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Default Re: Curse in Verse - the poetry of HD

As many of you will be aware, my latest attempt to fight for the HD cause is being focussed on the Work Capability Assessment issue.

I am so grateful that WCA was not a maze Steve had to try finding his way around. I would have been holding his hand through it of course, or pushing his wheelchair depending upon his stage of symptoms. However, I would have been well aware that the current system is flawed and been dreading its process. I a in no doubt it would have been to the detriment of mine and Steve's mental and physical health!

Please sign HERE

In my book I had previously written a poem called The Benefit Cheat (See below)

I do agree the government - whatever their flavour - need to do something to free up money where sadly there are those with no illness of any kind are abusing the system. My poem was a way of getting across that the denial side of HD makes this one of those illnesses where people like Steve leave it as late as possible to ask for help. Steve would have done anything in his power not to have been a percieved 'burden' to the state.

The Benefit Cheat

Introduction

I opted to put ĎThe Prescriptioní in this Section as I felt there was a social injustice issue in it. It occurred to me instead of assisting and wanting to enable those with HD and their families/carers to get financial support, there seemed to be a suspicion that everyone out there was just in it for what they could get. I shall resist the urge to comment on the pros and cons of the current changes in the benefits system as at April 2011.

In our case, the denial aspects of HD meant we did not claim for anything more than Job Seekers Allowance (JSA), or get any real support until actual diagnosis. This was despite it being acutely obvious the illness was taking hold and radically impacting on our finances.

At the time a specialist was seen, and was blood drawn (17th March 2005), my husband was on JSA and had been so since 2003. The poor man had been laid off many jobs, no doubt due to his performance getting worse, yet they did not know there was an underlying cause. He was still convinced someone would employ him until April 2005. I had to sit down with him at the Jobcentre and, with the help of his Advisor who was by now aware of the Huntingtonís explaining his struggles, tell my husband he would never work again. He was then put on Incapacity Benefit and I applied for Disability Living Allowance for him. Just over a year later I applied for Carers Allowance when I had to cease work to look after him full time.

This poem is not about benefit cheats in the sense that society tend to think of... Scroungers; spongers; fraudulent etc. Denial of HD can lead to support being withheld understandably as it has not even been claimed for. Thatís not to say it isnít much needed, it might be that itís a case of those in real need are being cheated of benefits, by reluctance to accept it is time...


The HD now affects his brain;
His office getting worried.
Relationships begin to strain;
His exit now gets hurried.

With wife aware his time is short,
And skills get more diminished,
She hasnít got the heart to say,
His working life is finished.

Their income now is cut in half;
They canít afford their pride.
He could apply for further help,
If HD werenít denied.

The benefits kick in at last,
When diagnosis made.
No mention though of all funds,
The system could have paid.

Taken from CURSE IN VERSE AND MUCH MORE WORSE
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Old 09-02-13, 04:04 PM   #177
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Default Re: Curse in Verse - the poetry of HD

I have a new blog entry on my website. It is geared around the petition as you would expect.

Please read Recognition is the name; E-Petition is the game HERE
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Old 09-02-13, 10:49 PM   #178
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Default Re: Curse in Verse - the poetry of HD

Quote:
Originally Posted by Trish View Post
I have a new blog entry on my website. It is geared around the petition as you would expect.

Please read Recognition is the name; E-Petition is the game HERE
Hi Trish, Have signed the petition and have signed up to Twitter in an effort to get others to sign. Incidentally, I can identify with a lot of the poems in your book, it is brill. Twiglet
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Old 10-02-13, 01:26 PM   #179
Trish
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Default Re: Curse in Verse - the poetry of HD

Quote:
Originally Posted by Twiglet View Post
Hi Trish, Have signed the petition and have signed up to Twitter in an effort to get others to sign. Incidentally, I can identify with a lot of the poems in your book, it is brill. Twiglet
Thanks Twiggs

Good luck with Twitter. Still terrifies me hitting the post button as it's so instantly out there lol. I'm also rubbish at trying to use so few words as U can C fm my posts in here
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Old 17-02-13, 12:20 PM   #180
Trish
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Default Re: Curse in Verse - the poetry of HD

Bumping up this thread not just to flag up the book but hopefully to get more signatures too.

There will be a programme on Channel 4's Dispatches on Monday 25th which looks interesting. It is billed in TV Mags as this week but looks like a Horse Meat episode has been scheduled instead given it's hotter news right now.

Please sign HERE

In my book I had previously written a poem called The Benefit Cheat (See below)

I do agree the government - whatever their flavour - need to do something to free up money where sadly there are those with no illness of any kind are abusing the system. My poem was a way of getting across that the denial side of HD makes this one of those illnesses where people like Steve leave it as late as possible to ask for help. Steve would have done anything in his power not to have been a percieved 'burden' to the state.

The Benefit Cheat

Introduction

I opted to put ĎThe Prescriptioní in this Section as I felt there was a social injustice issue in it. It occurred to me instead of assisting and wanting to enable those with HD and their families/carers to get financial support, there seemed to be a suspicion that everyone out there was just in it for what they could get. I shall resist the urge to comment on the pros and cons of the current changes in the benefits system as at April 2011.

In our case, the denial aspects of HD meant we did not claim for anything more than Job Seekers Allowance (JSA), or get any real support until actual diagnosis. This was despite it being acutely obvious the illness was taking hold and radically impacting on our finances.

At the time a specialist was seen, and was blood drawn (17th March 2005), my husband was on JSA and had been so since 2003. The poor man had been laid off many jobs, no doubt due to his performance getting worse, yet they did not know there was an underlying cause. He was still convinced someone would employ him until April 2005. I had to sit down with him at the Jobcentre and, with the help of his Advisor who was by now aware of the Huntingtonís explaining his struggles, tell my husband he would never work again. He was then put on Incapacity Benefit and I applied for Disability Living Allowance for him. Just over a year later I applied for Carers Allowance when I had to cease work to look after him full time.

This poem is not about benefit cheats in the sense that society tend to think of... Scroungers; spongers; fraudulent etc. Denial of HD can lead to support being withheld understandably as it has not even been claimed for. Thatís not to say it isnít much needed, it might be that itís a case of those in real need are being cheated of benefits, by reluctance to accept it is time...


The HD now affects his brain;
His office getting worried.
Relationships begin to strain;
His exit now gets hurried.

With wife aware his time is short,
And skills get more diminished,
She hasnít got the heart to say,
His working life is finished.

Their income now is cut in half;
They canít afford their pride.
He could apply for further help,
If HD werenít denied.

The benefits kick in at last,
When diagnosis made.
No mention though of all funds,
The system could have paid.

Taken from CURSE IN VERSE AND MUCH MORE WORSE
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