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Old 21-02-17, 08:33 AM   #321
Trish
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Default Re: Curse in Verse - the poetry of HD

Quote:
Originally Posted by Allan View Post
.
So, after reading this verse of Trish’s poem:

And later that night,
With laptop in bed,
He ‘Googled’ in private,
Words ‘HD’ and ‘dead’.

I googled “HD + dead” and came up with a non-functioning hard drive. I tried “Huntington’s Disease + dead” and came up with this:

More than half of woman’s family dead from Huntington’s disease [2015]

It suggested that I replace “dead” with “death” and it then came up with these:

I will die the most horrible death [2011] Charles Sabine’s story

Former TV reporter campaigns to bring Huntington’s disease out of the shadows [2013]

Huntington’s disease: the new gene therapy that sufferers cannot afford [2016]

Causes of death in patients with Huntington's disease and in unaffected first degree relatives [1992]

Fear of insurance penalties keeps Huntington's sufferers in the shadows [2010]

Charlotte Raven: 'I see myself as a recovering narcissist' [2013]

I have Huntington's disease, but I can still live life to the full [2010]

Computational Model Explains How Huntington’s Protective Molecular Path Dead-Ends [2016] plain language version

Systemic study of a natural feedback loop in Huntington’s disease at the onset of neurodegeneration [2016] scientific language version

That’s quite a variety of HD “stories” from such a quick search. It shows how this disease is unique with individuals in that it seems to affect everyone in so many different HD+ and HD- ways.

.
lol Allan 'Huntington's disease' didn't quite fit the poetry flow, so I used HD.

I haven't clicked to look within those links to drill down but already recognise the articles from many a night and day searching for HD stories.

I think that even the most optimistic (if that word can be used in the context) of those stories would frighten the beejeezers out of me if I were in the shoes of the fictional teenager in my poem. That is, unless I had the support of family or others with insight to talk about my fears.
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Old 12-03-17, 10:33 AM   #322
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Default Re: Curse in Verse - the poetry of HD

Howdy All

Just thought I would pop in and do a plug.

So pleased to see that since this Thread was started in October 2009 there had been over 100,000 views

I hope, even if people have not bought the book itself, they have found the example poems in here interesting and enlightening.

If anyone wants me to reproduce in here any of the following please do ask and, subject to the limitations of space for characters in posts, I would be happy to oblige.

Book contents:

Quote:
Contents

Acknowledgements

Introduction to this book

Section 1- Mind the Awareness Gap!

Introduction to this Section

The Poems:

The Test
The Sufferer
The Generations
The Carer
The Baby
The Awareness Dream
The Hope
The Patrons
The Prevalence
The HD APPG

Section 2 - The Appliance of Science

Introduction to this Section

The Poems:

The HD+ Optimist
The Fighter
The Guinea Pig
The Lab Rat
The Researcher
The Cocktail
The Videofluoroscopy
The Terminology
The Name Game
The Gay

Section 3 - Before the Storm

Introduction to this Section

The Poems:

The Owl and the Ostrich
The Check-ups
The Denial
The Unawareness
The Panic Button
The Innocent Answer
The Teacher
The Teenager’s Awakening
The Driver
The Bucket List

Section 4 – Family Values

Introduction to this Section

The Poems:

The Lost Generation
The Sibling
The Survivor’s Guilt
The Grandparent
The Infrequent Daughter
The Quality Of Life
The Ripple Effect
The Normality
The Touching Moments
The Best is Yet to Be

Section 5 - Adapt and Survive!

Introduction to this Section

The Poems:

The OCD Plea
The Stuck Record
The Impatient Patient
The Reader
The Rushed Hush
The Magic Of Music
The Tooth Fairy
The Hunger
The Corrupted Computer
The Brothers in Arms

Section 6 - Low Society

Introduction to this Section

The Poems:

The Insurance Salesman
The HD Shopping Trolley
‘Big Brother’
The Wheelchair Outing
The Help
The Prescription
The Benefit Cheat
The Return to Work Interview
The Boss (Part 1)
The Boss (Part 2)

Section 7 - The Dark Side of the Prune

Introduction to this Section

The Poems:

The Dyno Rod
The Flow Chart
The ENT Theory
The Tug of Love
The Jealousy
The Night Fighter
The Bedtime Prayer
Cheating Life
The Pillow fight
The Grief

Section 8 - The Caring of Angels

Introduction to this Section

TIME to Change
One scoop of patronisation or two?
Breaking Point
Rikki’s Story
The Eulogy


The book 'Curse in Verse & Much More Worse' is available from the HDA Shop ; AMAZON (Paperback and Kindle) and many more booksellers.

All reviews welcome be they in here or on the sellers website if ordering online.
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Old 13-05-17, 06:15 PM   #323
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Default Re: Curse in Verse - the poetry of HD

Just thought I would pop in and share my latest blog post.

Would have been Steve's birthday tomorrow.

Click HERE to read ON THE WINGS OF AN EAGLE & DOVE; CARRIES FAITH, HOPE, & LOVE.

Hope you like.

T x
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Old 17-05-17, 09:07 PM   #324
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Default Re: Curse in Verse - the poetry of HD

Quote:
Originally Posted by Trish View Post
Just thought I would pop in and share my latest blog post.

Would have been Steve's birthday tomorrow.

Click HERE to read ON THE WINGS OF AN EAGLE & DOVE; CARRIES FAITH, HOPE, & LOVE.

Hope you like.

T x
Thank-you for sharing Trish......Sorry late with belated birthday wishes to share for Steve.
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Old 18-05-17, 12:09 PM   #325
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Default Re: Curse in Verse - the poetry of HD

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Thank-you for sharing Trish......Sorry late with belated birthday wishes to share for Steve.
Thank you Crystal. Steve sends a huge thanks too no doubt (It's OK, I know what I will say when someone Sections me at some stage no doubt)

An update SINCE MY BLOG

The decision has now been posted on the Duty to Warn/Care of Duty Case. In essence; the Law Lords overturned their previous RCJ ruling that there was no case to answer.

The Appeal Panel found in favour of the Claimant and agree the Hospital Trust and others should face trial to decide whether they acted wrongly by not disclosing to the daughter her father's HD status. Thereby not allowing her to make an informed decision as to having children. That had the aftermath of her now with a child who is at risk.

Read the full written Decision HERE
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Old 19-05-17, 09:55 AM   #326
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Default Re: Curse in Verse - the poetry of HD

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Originally Posted by Trish View Post
Thank you Crystal. Steve sends a huge thanks too no doubt (It's OK, I know what I will say when someone Sections me at some stage no doubt)

An update SINCE MY BLOG

The decision has now been posted on the Duty to Warn/Care of Duty Case. In essence; the Law Lords overturned their previous RCJ ruling that there was no case to answer.

The Appeal Panel found in favour of the Claimant and agree the Hospital Trust and others should face trial to decide whether they acted wrongly by not disclosing to the daughter her father's HD status. Thereby not allowing her to make an informed decision as to having children. That had the aftermath of her now with a child who is at risk.

Read the full written Decision HERE
Hi Trish
Thank-you for the update on the above 'duty to Warn/Care of duty ' case. This is an incredibly complex and sad case. I wonder how many on the message board are following this case and the impact of the decision thus far. Yet again.....the words 'hidden no more'.....and the potential of a landmark decision and change in the law is monumental!
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Old 19-05-17, 03:54 PM   #327
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Default Re: Curse in Verse - the poetry of HD

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Hi Trish
Thank-you for the update on the above 'duty to Warn/Care of duty ' case. This is an incredibly complex and sad case. I wonder how many on the message board are following this case and the impact of the decision thus far. Yet again.....the words 'hidden no more'.....and the potential of a landmark decision and change in the law is monumental!
Thanks Crystal

I get it, you get it, but as for who else really gets it... It such a hard dilemma as to how it can be explained.

I am giving thought to doing a proper Thread in the appropriate area on MB. At this stage, I am kind of containing it in here/my blog as it is so complex and there are so many factors that need to be taken into account. Not least the fact the Claimant wants to remain anonymous where there is a child involved.

There have been a couple of legal blogs already written. I have put links to them below:

UK Humans Right Blog - Will genetically-informed medicine upend medical confidentiality? by Rosalind England

Legal duty to share genetic information goes to trial by Vicky Chico and Anna Middleton

I mailed Vicky and Anna today with the following which I don't think thy will mind my repeating in here. It's good that we have 'outsiders' also blogging. Maybe when the trial gets set, and the enormity sets in, there will be much more coverage but it is handled sensitively.

I watched 2 Dramas lately - Little Boy Blue and Three Girls. It would not surprise me to watch this story in a few years time.

Quote:
Thank you.

Somehow I managed to miss that one when doing a generic google search on ABC V St George's hence my wanting to check if an article was being done. Fabulous article and it's good to see people looking at the case from a non-HD tinted glasses view which I am always trying to collect where obviously biased.

Talking of glasses... I know from writing my book and doing blogs I get totally word blind after a while and miss lots of typos etc. If you guys have time to make the change, you may which to note there's been a word blindness issue and 'the encourgaement to share' might benefit from an edit.

When I went up to The Claimant and gave her my thanks explaining why I had an interest (I got sterilised) she thanked me. She then said to me "My son may have it". The way she said it, so heartfelt as if pleading, underlined to me just how much she is going through this not to lay blame on those who failed to support her and her family (including her father) when the System ignored their pleads for help when they knew the dad was acting strangely etc before the murder; she is not going through it to lay total blame on those who could have helped her and her sisters get some peace from knowing their father's actions were part of a sad illness meaning he was genuinely mentally ill when he acted as he did; it is to get justice for her son. A boy who will have to watch his mother die of what is actually called 'the cruelest disease known to man'. That's not just a description from HD circles. It's used by the Author Lisa Genova when describing HD here: http://www.huffingtonpost.com/lisa-g...b_7472554.html

Add to that the mental torment of knowing she may have passed HD on to her son.... I have a feeling The Claimant doesn't actually give a fig about whether this is a floodgate case or giant leap case and god knows what sort of Pandora's box will be opened if that happens in the world of hereditary diseases with a certainty of 50%!

She probably just wants someone to stand up and say something like "We are sorry... We will do everything we can to help you when the time comes and support you and your son, and be there for him to make his life as bearable as possible if, god forbid, in his case he also has HD without any new treatments or cures in the pipeline available. And yes... we will put on record now that his Grandfather and Grandmother were failed. Had the family be helped by understanding HD better."

Anything else that comes out of the case to help others in the HD Community will be a bonus. It could, of course, all backfire. Awareness in itself will, however, make a difference in many positives ways.

Best wishes

Trish
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Old 19-06-17, 07:45 PM   #328
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Default Re: Curse in Verse - the poetry of HD

Time for a little book plug me thinks

CURSE IN VERSE AND MUCH MORE WORSE.

All reviews welcome.
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Old 12-11-17, 09:30 AM   #329
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Default Re: Curse in Verse - the poetry of HD

While I am here...

Time for a little book plug me thinks

Make an interesting stocking filler for that person who doesn't know what HD actually means

CURSE IN VERSE AND MUCH MORE WORSE.

All reviews welcome.

Also available for the discounted price of £5 from the HDA Shop by the way.
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Old 25-11-17, 11:23 AM   #330
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Default Re: Curse in Verse - the poetry of HD

Today I have come in to put up a link to my latest blog post

REGISTRATIONS & MISCOMMUNICATIONS

It would have been mine and Steve's 29th wedding Anniversary today.

clicky HERE if you would like to take a look.
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