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Old 30-10-10, 09:37 PM   #41
Trish
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Default Re: Curse in Verse - the poetry of HD

Hi all,

I may change this one. Taken several attempts already but I did want to add the prevalence article as well as doing one on the APPG.

A bit long I know but I wanted to tell a kind of story bringing in different aspects.

@ Jacqueline. Would the bit on your example (shown in bold italics) be okay to mention and have I reflected it accurately please?

Intro

On June 30th 2010 The Lancet published an article penned by Sir Michael Rawlins, Chairman of the National Institute of Health & 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 rightly highlighted gaps in the capture of numbers where the HDA could not be expected to know of all cases 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 and 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 time a number of Members came along with stories of coming across HD by chance, This included one lady who’s first cousin met and married a man with HD just as she had done so. 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 best 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; our local jeweller’s father-in-law had HD.

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?


The Prevalence

“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 example 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 the time,
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 18-11-10, 02:30 AM   #42
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Default Re: Curse in Verse - the poetry of HD

Hi Guys,

I have made tonight an executive decision.

In the scheme of things I need to concentrate on Hubs and be selfish.

Whilst curse in Verse has always been a labour of love (not just to Hubs but to all of you guys) as Matt quite rightly pointed out it was never worth spending time and money on.

The personal project is therefore ended.

Thank you so much to those of you who gave support and to those of you who want to use the poems in your own projects as requested via PMs or e-mail. Please still feel free to do so.

I am now taking a break from Message Board to concentrate on Hubs

Thank you again for your support

Trish xxx
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Old 18-11-10, 09:17 AM   #43
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Default Re: Curse in Verse - the poetry of HD

Quote:
Originally Posted by Trish View Post
Hi Guys,

I have made tonight an executive decision.

In the scheme of things I need to concentrate on Hubs and be selfish.

Whilst curse in Verse has always been a labour of love (not just to Hubs but to all of you guys) as Matt quite rightly pointed out it was never worth spending time and money on.

The personal project is therefore ended.

Thank you so much to those of you who gave support and to those of you who want to use the poems in your own projects as requested via PMs or e-mail. Please still feel free to do so.

I am now taking a break from Message Board to concentrate on Hubs

Thank you again for your support

Trish xxx
Hi Trish
Just wanted to wish you all the best. Hope hubs is as well as can be expected.
Don't leave it too long to get back to us, you will be missed hun x
Take care
Sue
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Old 16-12-10, 05:22 PM   #44
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Default Re: Curse in Verse - the poetry of HD

One last poem for 2010.

Have a peaceful Christmas, and a hopeful New Year everyone!

Trish xxx



Twas 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.
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Last edited by Trish; 16-12-10 at 05:30 PM. Reason: Formatting needed from Word transfer
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Old 18-12-10, 05:33 PM   #45
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Default Re: Curse in Verse - the poetry of HD

i loovvvee ittZ!!!!xxxxxxxxxxxxxx
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Old 09-04-11, 08:37 AM   #46
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Barring anyone coming back to me to ask for an extension in deadline for comments (April 14th) I hope next week to crack on with getting the follow-up to Curse in Verse published It will take several weeks so no one hold your breath but I will let people know when I get something I can publicise.

I have had some great feedback so far and whilst poetry may not be to everyones' taste -not just my efforts, Ask Byron, I hasten to add - I hope to somehow get a bit more awareness out there.

Thank you to all of you who have provided input/inspiration either directly or indirectly. I have attributed some of the members where I could sensitively do so but sought permission beforehand.

Wish me luck. It could all go so horribly wrong lol
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Old 09-04-11, 10:25 AM   #47
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Default Re: Curse in Verse - the poetry of HD

wishing you Good Luck Trish.




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Old 09-04-11, 11:32 AM   #48
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wishing you Good Luck Trish.




Brian
Thank you Brian

Trish x
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Old 15-04-11, 08:09 AM   #49
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Default Re: Curse in Verse - the poetry of HD

Oh well... The publishers now have the text etc and are working on the typesetting so, in theory, there should be a book in the next few weeks :
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Old 20-04-11, 10:43 AM   #50
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Default Re: Curse in Verse - the poetry of HD

In the 'Have crafts helped you' Thread I mention a poem I am exhibiting at the Carer's Week Event for my area in London.

Below is reproduced the original Introduction to my poem 'The Tug of Love'. The poem and adapted Intro will be given on the next post.

The Tug of Love

Introduction


When I was a child I saw a film called ‘Whatever happened to Baby Jane’. It was an old Hollywood film starring Bette Davis and Joan Crawford. It horrified me that the disabled sister was served a rat on a plate as a kind on mental torment and torture by the other sister who had become her carer. The film was a horror thriller, and the carer had gone quite mad for reasons way beyond being a carer I hasten to add, but I still wondered how anyone could be such a cruel and evil old cow to someone so vulnerable?


I’m not saying I have done anything as nasty myself but I would be lying if I didn’t admit there were times I was driven to being what could easily be termed as cruel or spiteful. The extra tug on the arm when having difficulty in dressing; the delay in doing something where in all honesty it didn’t have to wait but doing it on my own time and terms felt I had control over the situation.


Even threatening a nursing home if all else failed to try to get some sort of understanding that I had no alternative but do what I was doing at the time. The threat was often accompanied by crying where I didn’t feel I could cope anymore and the tears themselves must have tormented my husband where he would have helped me if only he could. Anger, a nursing home (his ultimate fear) and a crying self pitying woman. I still feel self loathing and shame when I think about how cruel that was even though I was always at my lowest ebb by then.


Years ago I would never have dreamt I could publically admit such a thing but from reading Hugh Marriott and John Harding I realised I was not alone. In ‘The Selfish Pig’s Guide...’ there is a chapter entitled ‘Pushing them down the stairs’. The whole chapter tries to help carers understand why they feel that way and how to recognise the signs be it overtly physical or subtle.


John Harding’s ‘What we did on our holiday’ describes the sheer frustration and desperation of the wife when her husband’s head is lolling to one side. She cannot cope. Not just with the physical difficulties this makes but the emotional recognition that progression is now going beyond her ability to help him. As I have mentioned before... Whilst writing about Parkinson’s disease it could just have easily been HD. I have been there...


Neither writer sets out to condone cruelty but, by even just acknowledging it happens, they helped me. I am sure along the way they have helped many others too, both carers and patients, or should that be victims, alike.
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