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Old 11-12-16, 02:42 PM   #301
Brian2001
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Default Re: Curse in Verse - the poetry of HD

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Morning everyone.

Today would have been mine and Steve's 28th Wedding Anniversary.

I have done a blog entry to mark the occasion. I hope you all enjoy reading about my very special man and also my exploits since Steve's Birthday Blog in May.

As ever, I have tried to use the blog to capture salient HD information links along the way. This time I also cover Duty to Warn; ESA news and my awareness/fundraising adventure under #SybilOnTour.

Please take a look and share if you think others will be interested or benefit from some of the information.

Click HERE to read my latest Blog - Warning Signs and Tube-Train Lines.
belated Happy Anniversary wishes Trish!!!


-Brian.
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Old 12-12-16, 10:44 AM   #302
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Default Re: Curse in Verse - the poetry of HD

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belated Happy Anniversary wishes Trish!!!


-Brian.
Thank you Brian. Thinking of you & V today
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Old 17-12-16, 10:07 AM   #303
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Default Re: Curse in Verse - the poetry of HD

Hi Brian, and all those who, like me, have lost their partners to Huntington's.

The following poem is not in My Book. I wrote it to comfort myself the first Christmas with Steve not being with me in the flesh and blood form of carbon to feel better and accept better. Some of my poems just come to me in the form of words and sentances that pop into my head. I'd like to think Steve sent it to me when I was at a low point.

Each year I take out my printed copy and it helps me get through the day. This will be my 6th year.

I hope it gives others comfort too.

Christmas Dinner, an empty chair;
It breaks your heart that I'm not there.
I read the sorrow in your face,
When raising glass to empty space.

Please don't feel bad, it had to be;
We all must die, so why not me?
But then again, I am not dead,
Whilst in your heart, and in your head.

I've no regrets; I have no pain;
Though not alive, I'm whole again.
So raise your glass, I am still here;
We'll share this toast, again each year.
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Old 17-12-16, 10:35 AM   #304
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Default Re: Curse in Verse - the poetry of HD

Quote:
Originally Posted by Trish View Post
Hi Brian, and all those who, like me, have lost their partners to Huntington's.

The following poem is not in My Book. I wrote it to comfort myself the first Christmas with Steve not being with me in the flesh and blood form of carbon to feel better and accept better. Some of my poems just come to me in the form of words and sentances that pop into my head. I'd like to think Steve sent it to me when I was at a low point.

Each year I take out my printed copy and it helps me get through the day. This will be my 6th year.

I hope it gives others comfort too.

Christmas Dinner, an empty chair;
It breaks your heart that I'm not there.
I read the sorrow in your face,
When raising glass to empty space.

Please don't feel bad, it had to be;
We all must die, so why not me?
But then again, I am not dead,
Whilst in your heart, and in your head.

I've no regrets; I have no pain;
Though not alive, I'm whole again.
So raise your glass, I am still here;
We'll share this toast, again each year.

lovely heartfelt sentiments, eloquently put...

Thank you for sharing that Trish.



Brian.
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Old 17-12-16, 08:05 PM   #305
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Default Re: Curse in Verse - the poetry of HD

That is a stunning and lovely poem. I hope it brings solace to you all. xx
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Old 18-12-16, 08:27 PM   #306
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Default Re: Curse in Verse - the poetry of HD

Thank you Trish for sharing such a beautiful, personal poem.

Crystal x
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Old 19-12-16, 07:18 AM   #307
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Default Re: Curse in Verse - the poetry of HD

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Originally Posted by Brian2001 View Post
lovely heartfelt sentiments, eloquently put...

Thank you for sharing that Trish.



Brian.
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That is a stunning and lovely poem. I hope it brings solace to you all. xx
Quote:
Originally Posted by Crystal View Post
Thank you Trish for sharing such a beautiful, personal poem.

Crystal x
Thank you guys. xxx
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Old 30-12-16, 09:54 AM   #308
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Default Re: Curse in Verse - the poetry of HD

While I'm here...

Thought I'd drop in a cheeky book plug

Clicky HERE for the book - Curse in Verse and Much More Worse

And Blog plug is HERE

All reviews welcome
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Old 14-01-17, 11:16 AM   #309
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Default Re: Curse in Verse - the poetry of HD

Morning lovely peoples

Thought I'd pop in and post a cheeky plug for the book.

Sample poem also given below

Clicky HERE

The Prevalence

Introduction

On June 30th 2010 The Lancet published an article by Sir Michael Rawlins, Chairman of the National Institute of Health and Clinical Excellence (NICE). The article, entitled ‘Huntington’s disease out of the closet?’ underlined the need to pin down more data on the real prevalence of HD.

As a lay person reading the article, Sir Michael raises questions about the possible underestimation in the prevalence of HD. A prevalence estimate of 12.4 per 100,000 of the population of England and Wales was given as a minimum, based on the HDA having 6,702 diagnosed cases of HD on their books at the time of calculating.

Sir Michael highlights gaps in the capture of numbers where the HDA could not be expected to know of all cases of HD in England and Wales. The figures known could only formally be based on referrals from health practitioners. The stigma surrounding the disease means many people do not seek diagnosis, either through fear of the outcome or through ignorance of the disease being in the family and/or its inheritance risk.

The article also spoke of the need to better know the numbers in order to plan for the future. Finance and resources need to be made available to cope with the complex needs of HD. Not just in terms of the symptomatic patient, but those at risk, whether or not going through the testing stages.

Alongside the above, Sir Michael raises the need to tackle the disease head on by increasing research resources. By investing more in research to delay or ultimately stop progression, which needs far more concentration on pre-symptomatic patients, the drain on resources and strain on families will be less in the future.

Just out of interest, I posted up on the HDA Message Board a question.

I asked Members to add stories of instances where they had randomly come across others affected by HD. Bearing in mind how rare this disease is said to be...

Within a short space of time, a number of Members came along with stories of coming across HD by chance, This included one lady whose first cousin met and married a man with HD just as she had. However, the husbands were from different towns and totally unrelated. Then there was her neighbour who had worked with a man who had HD, and then there was a young man attending the same school as her grandchild who also had HD in the family.

For my own part, my husband’s friend at school married a woman with HD in her family; my brother-in-law’s ex girlfriend’s adopted father had HD; a friend of mine only recently discovered a HD link to foster children he grew up with, and our local Jeweller’s father-in-law had HD. I found that out when having my husband’s wedding ring changed where his weight had plummeted and mentioned HD was why there would be a hand tremor.

Last but not least... Since writing the original version of this book in paperback I have discovered another amazing link!

The woman presiding over mine and Steve’s wedding at Wandsworth Registry Office on November 25th 1988, and whose name is signed on our wedding certificate, had HD! I only discovered this when coming across her daughter through the HDA Message Board.

I do accept if someone is looking for something then they are much more likely to find it, but surely the odds of coming across totally unrelated cases of HD shouldn’t be that high if it is meant to be that rare?


“He fell again”, says the wife on the phone,
As she chatters with her husband’s brother.
“Tell him to take it with water next time,
He’s beginning to sound like our mother”.

The father had walked out on mother years back;
The boys had blamed that on her drinking,
What they couldn’t have known was depression and booze,
Was just part of her balance and thinking.

When seeing the Doctor several weeks on,
He’s asked if there’s anything known,
Of similar traits in the family tree,
Where examples of things can be shown.

“None at all” says the husband,
Believing he’s first to have something they cannot explain;
Not aware of the gene that was passed down the line,
As the doctor asks questions in vain.

Unbeknown to the boys in a town far away,
Their step-sister had hidden the news,
She’d worked out for herself that their mother was ill,
But was too scared to tell them her views.

Having married a man who had worked in a place,
Where a colleague with HD had been,
They discussed the disease, and with unnerving ease,
She identified symptoms she’d seen.

With awareness she’d found that HD was renowned,
To have stigma and keep itself ‘hid’;
And with step-brother’s children to add to dilemma,
She opted to keep on a lid.

So for several years more the oblivious sibling,
Was on his GP’s door still knocking;
With tests and prescriptions signed off all the while,
And their NHS costs which were shocking!

When finally everything else is ruled out,
And Huntington’s comes in to play,
The step-sister mentions she’d known all along,
But was worried about what to say.

The budget forecasts are due in next month,
He puts ‘1’ in the ‘Cases – HD’,
But he knows with the mother, and children and brother,
The Doctor could count at least three!
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Old 27-01-17, 12:08 PM   #310
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Default Re: Curse in Verse - the poetry of HD

My latest Blog post 'PHOTOGRAPHIC MEMORIES & BLIND FAITH can be seen HERE

Today is particularly poignant as it is six years since Steve stuck two fingers up to HD and went to sleep.

Always remembered
Always loved!
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