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Old 25-11-15, 11:14 AM   #271
Trish
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Default Re: Curse in Verse - the poetry of HD

Hi everyone.

Popped in today to post up a link to my latest blog entry. Today would have been mine and Steve's 27th Wedding Anniversary.

CLICK HERE to read 'A Wealth of Mental Health'. New poem and a little slideshow to music included.
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Old 26-11-15, 05:17 PM   #272
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Default Re: Curse in Verse - the poetry of HD

Hi Trish
Hope you are well. I have just finished reading your latest blog and seeing what you are up to. Just wanted to say that your latest poem is very poignant and the photo video very touching...watching it through, with the photos going back to the beginning again made me think "if I could turn back time", and I guess many of us would like to do that...Take care x
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Old 29-11-15, 12:12 PM   #273
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Default Re: Curse in Verse - the poetry of HD

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Originally Posted by shiraz View Post
Hi Trish
Hope you are well. I have just finished reading your latest blog and seeing what you are up to. Just wanted to say that your latest poem is very poignant and the photo video very touching...watching it through, with the photos going back to the beginning again made me think "if I could turn back time", and I guess many of us would like to do that...Take care x
Thanks Shiraz

I'm ok thanks for asking.

Hope things are running as smooth as they can for you.

Take care hun x
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Old 12-12-15, 01:54 PM   #274
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Default Re: Curse in Verse - the poetry of HD

Whilst I'm here

Time for a book plug me thinks.

As usual, if anyone has brought the book all reviews would be welcome. Good ones and bad ones as all are useful to those browsing whether to buy or not.


CLICK HERE FOR THE AMAZON LINK


Copies should also be available from the HDA Shop - click here.

Still a few days to shop for Xmas. Look in the Shop for ideas for Xmas prezzies (my book suits the category of buying for those you love and those you hate lol) and then there's the HDA stocking fillers.
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Old 23-12-15, 04:04 PM   #275
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Default Re: Curse in Verse - the poetry of HD

Whilst I'm here

Time for another book plugs.

As usual, if anyone has brought the book all reviews would be welcome. Good ones and bad ones as all are useful to those browsing whether to buy or not.


CLICK HERE FOR THE AMAZON LINK


Copies should also be available from the HDA Shop - click here.
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Old 27-01-16, 11:06 AM   #276
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Default Re: Curse in Verse - the poetry of HD

Today is Steve's 5th Angelversary

As always, I have written a blog entry to mark the occasion.

Click HERE for COINCIDENCE OR SIXTH SENSE?
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Old 27-01-16, 01:14 PM   #277
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Default Re: Curse in Verse - the poetry of HD

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Originally Posted by Trish View Post
Today is Steve's 5th Angelversary

As always, I have written a blog entry to mark the occasion.

Click HERE for COINCIDENCE OR SIXTH SENSE?

Given me goosebumps! How beautiful and wonderful to read.
HAPPY ANGELVERSARY.
Crystalx
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Old 28-01-16, 04:34 PM   #278
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Default Re: Curse in Verse - the poetry of HD

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Given me goosebumps! How beautiful and wonderful to read.
HAPPY ANGELVERSARY.
Crystalx
Thank you!
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Old 06-02-16, 11:11 AM   #279
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Default Re: Curse in Verse - the poetry of HD

Time for a book plug me thinks

Curse in Verse and Much More Worse

Also a request for reviews if anyone has bought on-line and has the option.

Sample poem below (taken from the Kindle Version).

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 21-02-16, 11:58 AM   #280
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Default Re: Curse in Verse - the poetry of HD

Time for another book bump?

Clicky HERE for details on Curse in Verse and Much More Worse

Really pleased that the Kindle version is in the top 100 as I type for the category as seen in bold below.

Don't get excited, it's not exactly a best-seller in real terms. Certainly not in revenue terms that's for sure as it's just a few pennies per download royalty and free to read on the Kindle Unlimited option. However, it does suggest some people are downloading it and hopefully getting some of my unique awareness in the process.

Average Customer Review: 4.8 out of 5 stars 6 customer reviews

Amazon Bestsellers Rank: #187,016 Paid in Kindle Store (See Top 100 Paid in Kindle Store)

#83 in Books > Health, Family & Lifestyle > Medical & Healthcare Practitioners > Basic Medical Science > Medical Genetics

#119 in Kindle Store > Books > Nonfiction > Professional & Technical > Medicine > Basic Science

#2201 in Books > Science & Nature > Education > By Subject > Medicine
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