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Old 21-07-12, 10:54 AM   #141
Trish
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Default Re: Curse in Verse - the poetry of HD

Time for another book plug

UK Amazon paperback

Amazon Kindle

USA Amazon


Alternatively, the HDA are selling copies for £5 + £1 P&P

Click here for HDA Form

A whole host of other goodies are also available from the HDA Shop

HDA Shop - General Merchandise

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Old 26-07-12, 01:17 PM   #142
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Default Re: Curse in Verse - the poetry of HD

Tomorrow marks 18 months since Steve died. I thought I'd commemorate by doing a post and poems in my WordPress Blog.

With the date coinciding with the opening of The Olympic Games, I thought I would give the entry an Olympic theme

Wordpress Blog

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Time for another book plug

UK Amazon paperback

Amazon Kindle

USA Amazon


Alternatively, the HDA are selling copies for £5 + £1 P&P

Click here for HDA Form

A whole host of other goodies are also available from the HDA Shop

HDA Shop - General Merchandise

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Old 26-07-12, 04:31 PM   #143
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Default Re: Curse in Verse - the poetry of HD

beautiful, Trish!
As an at risk person I thank you for it!
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Old 26-07-12, 04:39 PM   #144
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beautiful, Trish!
As an at risk person I thank you for it!
Thank you Katinka.
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Old 29-07-12, 09:38 AM   #145
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Default Re: Curse in Verse - the poetry of HD

Thank you Trish for your beautiful & moving poem "The Touching Moments".
Raphael X
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Old 29-07-12, 01:53 PM   #146
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Thank you Trish for your beautiful & moving poem "The Touching Moments".
Raphael X
Thank you Raphael. X

I have inserted the ful text below for those not familiar with it.

The Touching Moments

Introduction

This poem was penned on a day when I managed to stupidly knock my head on the metal part of the ceiling track hoist when attending to my husband. I was emotionally overwhelmed by my husband’s sweetness and concern for me.

At the time of writing my husband had cognitive difficulties; he was in a wheelchair; he was incontinent; he had weakening muscles in his mouth and tongue making speech harder and more frustrating for him by the day. Shall I go on...?

Although he had an unbearable illness he suffered it with no self pity or real bitterness towards anyone. That said...He would get angry and frustrated with himself and me at times, who could blame him? I am sure I would have been an unbearable patient in his shoes.

However, at ‘late stage’ he seemed to have resigned himself to his fate. It must have been so humiliating for him having to be looked after like a baby! As strange as it may sound, there were times I’d have given anything for him to go back to the man he was when shouting and agitated as it meant he had fighting spirit, even if it was me he was sometimes fighting.

Bending down to put on the pad,
I straightened myself up when done.
Head was raised and on metal I grazed;
A shout out of pain where it stun.

The fear on his face as he looked up at me;
But I smiled and just pushed hoist away.
“I’m fine” I said, whilst rubbing my head,
As I heard him slur “Are you Okay?”

It was only a bump but it made us both jump,
And it frightened him much more than me.
As the evening progressed, the same question addressed,
There was hardly a mark I could see.

As I tucked him in bed, his eyes fixed on my head;
Again he slurred was I “okay?”
It was touching to see, that he still cares for me,
When his own life is ebbing away.
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Old 04-08-12, 03:11 PM   #147
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Default Re: Curse in Verse - the poetry of HD

Just another plug for the book and also to plug the blog. The blog started out as a kind of chronicle of my efforts to self publish but has ended up being more a tribute to Steve and those with HD which I am happy about

Curse in Verse

Also available via the HDA Bookshop (HDA Factsheets) under Other Publications

Most recent blog which I was very proud to say was 'retweeted' by Sarah Winckless Wordpress - Curse in Verse
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Old 19-08-12, 12:29 PM   #148
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Default Re: Curse in Verse - the poetry of HD

Quote:
Originally Posted by Trish View Post
Just another plug for the book and also to plug the blog. The blog started out as a kind of chronicle of my efforts to self publish but has ended up being more a tribute to Steve and those with HD which I am happy about

Curse in Verse

Also available via the HDA Bookshop (HDA Factsheets) under Other Publications

Most recent blog which I was very proud to say was 'retweeted' by Sarah Winckless Wordpress - Curse in Verse

Yes it's plug the book time

For everyone who has purchased I send a huge THANK YOU

I'm very pleased to see Hugh Marriott's book featured as a book often bought in union with my one. It was the first book for carers I read and thought this guy speaks for real carers in real situations

Curse in Verse
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Old 28-08-12, 11:35 AM   #149
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Default Re: Curse in Verse - the poetry of HD

On another site, I posted up about care and awareness for HD. A guy got in touch with me (Mo Sakel – Director of NeuroRehabilitation in East Kent Hospital Trust). Mo was interested to read my book where HD is one of the disorders he represents.

Mo sent me a link to an article he and a carer for someone with Motor Neurone Disease (MND) wrote. The full article is available on this LINK and was published in The British Medical Journal.

I wanted to share the article wider as it speaks for many carers and patients with neuro disorders, not just MND.

To quote part of his comments he writes ‘I believe that carers need to be given more formal consideration by society. Has the time come for amending the legal duty of care to include the carer’s view? At the moment, doctors owe legal “duty of care” only to patients, if they are an adult and have got a clear mind to consent.

The system compels carers to go through an identity change from “lover” to “carer” to “professional”—for example, carers have to learn how to use and look after various assistive technologies. Being a carer brings increased responsibilities without any real authority being reflected in British law, which does not give the carer any legal authority in the decision making process for those interventions.

It’s very encouraging to read of carer and patient advocates like Mo, and Units and hospitals, like his in East Kent, who are taking such a refreshing view.
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Old 15-09-12, 07:55 AM   #150
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Default Re: Curse in Verse - the poetry of HD

Time for another book plug

Amazon link Here

Other sellers are avaliable including the HDA Book Shop

ohhhh

And the Director of NeuroRehabilitation in East Kent Hospital Trust I mentioned previously has been back to me to say that, although it is all down to getting the resources and budget sorted, he has persuaded the Head Commissioner for his Hospital Trust to 'add HD as a new service provision'.
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