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Old 05-09-10, 12:47 PM   #31
Ruby2005
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Default Re: Curse in Verse - the poetry of HD

I was responding in another thread today and it reminded me of the poems and a few that struck a chord with me even though I am not directly linked to HD.

http://authspot.com/poetry/curse-in-...e-boss-part-1/

http://authspot.com/poetry/curse-in-...e-boss-part-2/

http://authspot.com/poetry/curse-in-...ork-interview/

http://authspot.com/poetry/curse-in-...ality-of-life/

http://authspot.com/poetry/curse-in-...the-normality/
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Old 11-09-10, 11:33 AM   #32
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Default Re: Curse in Verse - the poetry of HD

Hi all,

Just posted in the Pension Thread and thought I ought to say thanks to all of you who gave me words of encouragement, especially Raphael who has been checking my grammar on some of the poems And Ruby who has been a sweetheart 'Cheeky cow' indeed

I'm still not sure what I'm going to do with the poems but I may just fund it myself and have profit going to the HDA although it will be a long, long time before any profit lol.

I'm still writing and posting up via Triond so do take a browse now and then. The last few poems have been a bit dark I know but they were more for my own benefit when written originally but I thought s#d it. I'll publish anyway.

Take care all and I can't recommend highly enough the benefits of writing stuff down even if it's only for your own personal reading. It's extremely liberating and wonderful therapy!!!

Bye for now and I'll up-date if I ever do get anything published professionally.
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Old 11-09-10, 02:42 PM   #33
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Default Re: Curse in Verse - the poetry of HD

Trish,

Why don't you use Lulu like Jimmy Pollard did? It's free, I assume they take a cut when you sell a copy, but they publish for free. I really don't think spending £1,000 of your own money is very smart right now, you can spend that money on a break for you and hubby.

Tc, Matt.
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Old 11-09-10, 03:12 PM   #34
Trish
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Default Re: Curse in Verse - the poetry of HD

Matt,

I did write another post in here but decided to edit.

Could people please note that Lulu is not a free site. It says it is but that is only the case if you don't require any of the services they offer and have everything done yourself including graphics, layout etc, etc and it doesn't stand that what I may have on a word document will transfer directly into their templates.

Also:

The site is geared for those in the USA (where Jimmy is) there are added costs and complications where distributing from the UK applies thus making the cost per copy too high to be marrketable to a small market.

Can I also ask people to look at the project I was hoping to do as a labour of love and not profit. I have always made it clear any revenues raised were for the HDA. It is not a case of 'Vanity publishing' either. It was always with the intention of raising awareness and it was dedicated to my husband and his father first and foremost. To that end I would pay £100,000 if I had it!

I know that Matt does not consider me 'smart', I know that Matt may think I am wasting money that could be spent on Hubs. I hope those of you who actually know me will know I would not sacrifice Hub's comfort for the sake of a book and I am not the type of person to venture on things without looking at the pros and cons (cons being the operative word here) first.

I'm sorry I feel once again i need to defend my posts but I really didn't want it left to look like I was being thick and selfish. Not that Matt would have meant that I am sure but unfortunately there were a number of assumptions made above which I wanted to counter before I leave.

Trish x
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Old 11-09-10, 05:44 PM   #35
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Default Re: Curse in Verse - the poetry of HD

I'm just saying I think you can achieve what you want to achieve without spending large amounts of money. It's already gone pretty well, the HDA sell the poems on their website, that's a success in itself. I support the idea of turning it into a proper book.
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Old 11-09-10, 06:03 PM   #36
Trish
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Default Re: Curse in Verse - the poetry of HD

Quote:
Originally Posted by just1moreperson View Post
I'm just saying I think you can achieve what you want to achieve without spending large amounts of money. It's already gone pretty well, the HDA sell the poems on their website, that's a success in itself. I support the idea of turning it into a proper book.
Matt,

Can I please ask that this be the last word on this as I feel I am having to justify everything and it's becomming time consuming and frustrating for both of us.

If we refer to my initial post I already mentioned the problem with Lulu and the fact that sales via the HDA are going slow (unless you know something I don't?) and it is not a good use of their resources where they are printing and binding. It's just about covering costs of production and I am sure everyone would agree the admin staffs' time is better served on other things.

Original post:
'Take up has been slow but I can live with that. In terms of HDA use of' resources, given there is little if any profit in doing it that way and certainly very limited marketing (although a big THANK YOU applies to the HDA for taking it on and putting it on the site and HDA Newsletter) I have been thinking about other methods of getting it produced and sold.

I was listening to Jeremy Vine on Radio 2 yesterday and he had an article about self publishing sites. In particular he focused on Grosvenor House Publishing and there was a lot of good feedback on how they work. For a fee of about £1,000 they will work with authors to produce printed copies of books and get them out into the public arena getting advertised on sites like Amazon.Com and Waterstones.

Lots of other companies do similar packages. I note Jimmy Pollard used Lulu but, as they are an American company, the feedback has come back a bit hit and miss in terms of UK users.'

You will know as well as anyone else that marketing is key to raising awareness and the HDA is not exactly a place where people would automatically go to look up books. Sites like Amazon are and this way the sites advertise and distribute to a wider audience.

Now can we please leave it at this?

Many thanks

Trish
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Old 04-10-10, 11:33 AM   #37
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Default Re: Curse in Verse - the poetry of HD

Hi all,

I'm cracking on with the poems and have a request for input from those who read and or contributed to Pimp my Blog.

Along with the poems I am adding a section at the end using parts of PMB to help illustrate poems further.

The parts I have in mind at this stage are:

The section on my seeking therapy to outline The British Assoc of Thgerapists http://www.bacp.co.uk/

The part where I took hubs out in a wheelchair for the first time and people treated him like a deaf mute all of a sudden whereas before they spoke direct to him not through me

I will also be adapting a post contributed in here by Twamoons of how the HD brain works http://www.hda.org.uk/board/showpost...04&postcount=4 I will of course credit twamoons for the original idea.

With Myrna's permission I would like to put in the speech about Rikki on JHD. Again, creditting Myrna

I may add my mushroom soup recipe (poem on 'Souperfoods' to illustrate weight problems and trehalous being good for HDps etc.

Did anyone ever try this and were the measurements okay as I tend to just chuck the stuff in lol

Has anyone any other parts of PMB they think might be worth using or any posts in here that were Eureka moments?

Thanks all


Trish x

http://www.hda.org.uk/board/showpost...59&postcount=3
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Old 04-10-10, 07:22 PM   #38
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Default Re: Curse in Verse - the poetry of HD

In the absence of any input lol I have remembered this thread.

http://www.hda.org.uk/board/showthread.php?t=1085

My poem 'The Help' is abaout a Nursing Home where staff are uncaring. My intro was left very brief as I didn't want it to look like I believed all NHs are bad. There are some very good ones out there.

The St Andrews Guide has a wonderful list of things for carers to note for their fisrt days on the job as does Jimmy Pollard's book so I will refer to those also. Brian's White Board idea was a great tip which I think is worthy of mentioning.
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Old 15-10-10, 05:09 PM   #39
Trish
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Default Re: Curse in Verse - the poetry of HD

Just been watching the EHDN video.

Well done on your presentation Matt btw.

I wanted to post this poem up which comes from my section 'Dark Side of The Prune'

The section covers the taboo areas. Don't worry HDA I am stating that all the views are my own and that this edition is unauthorised.
The poem below was taken out of the original Curse in Verse on request of the HDA as it covered the controversial subject of animal testing. I raise it here now as I was aware whilst I may have my own opinions on lab testing in the HD Community we seem to accept it as a necessary evil. I was comfortable hearing Jeff etc talking about mouse models if I am honest as it gives hope and that is paramount.

To test the water I have put in below a poem I was asked to take out of the original book. I'd be interested to take a form of poll on whether it's too provocative.

Chances are I may just get one comment lol but can I ask for a simple response please. I'm not interested in opening a debate on animal testing ethics. I'd just like to hear:

'Leave in' or 'Too controversal'

I have opened up my PM enabled facility to take votes for this purpose.

Here goes:

I was asked to take the following poem out of my original Curse in Verse book. I could see there was merit in doing so given the sensitivity of the subject matter. I complied but always felt uncomfortable with it as I felt I was letting the poor creatures down. Iím not saying I condone testing on animals, in fact Iíd rather more consenting human testing be used but recognise the minefield of ethics.

Whatever your own personal feelings about laboratory testing on animals the fact remains that, as I type this book, all over the world animals are being used for experimentation. Not just for HD but to help create treatments and cures for all human and animal diseases known to mankind.

In view of the above I wanted to recognise the plight of laboratory animals. They have a place in this book to have a tribute to them just as much as anyone, or anything else.

The Lab Rat


The creature lays there in its cage,
The wires to its head.
Itís been injected for so long,
It really should be dead.

And yet its tiny heart beats strong,
Its body fighting back.
It has no sense of what it has,
Or how the genes attack.

The next day when the human comes,
She feeds him feeling numb.
She cannot dare to even care,
The animal is Ďdumbí.

But everyone with HD knows,
That Ďdumbí is not the score.
They owe a debt of gratitude,
To him and thousands more!
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Old 22-10-10, 05:40 PM   #40
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Default Re: Curse in Verse - the poetry of HD

Been a week now since I asked about whether this poem had a place in the anthology or not and there have been several positive comments and not one negative so I am keeping it in

Feel free to PM me if anyone has any strong objections and I will consider re-thinking the wording/introdution to reflect where possible.

If anyone has any strong feelings about any of the other poems feel free to make comment too.

I am working on a number of other poems that could be classed as controversial but I feel they have a place as the subject matter will have been something that has either brought interest in here (Message Board) or been written about in other books such as The Selfish Pig's Guide.

Probably won't be until the New Year now but I'd love to get -say - a dozen people on board to look the final drafts from my end and let me know of any mis-information I may be putting forward as my research can only go so far.

Cheers

Trish
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