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Old 10-02-15, 07:39 PM   #241
shiraz
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Default Re: Curse in Verse - the poetry of HD

HoDeHo

Just had another thought. The Mail on Sunday magazine You often does Real Life features, women telling their stories and often with regard to bereavement or serious medical conditions and that they have written their experiences in a book. So, just in case, You, Northcliffe House, 2 Derry St, London W8 5TS Switchboard: 020 3615 0000. Editor Sue Peart, Asst. Features Editor Rosalind Lowe.
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Old 10-02-15, 08:42 PM   #242
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Default Re: Curse in Verse - the poetry of HD

I downloaded CinV to my Kindle and read it last year.....but just needed to have the hard copy....ordered yesterday from HDA and arrived today...fab! They say they only have 6 copies left....
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Old 12-02-15, 04:16 PM   #243
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Default Re: Curse in Verse - the poetry of HD

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HiDeHi

Sorry about your weemopandbucket moment!

I know medical schools have extensive libraries, university campus bookshops, indeed why not schools, Help the Aged. The lovely Philip Schofield - his breakfast show often features a guest slot with a personal tale to tell - book plug there for sure, huge audience - and nice comfy sofas! Like wise local news shows. I'm guessing you have already contacted bookshops like Waterstones. Oh and private care home businesses, indeed the supermarkets all have book departments and their customers will consist of a myriad of carers and it is after all a book for any carer, it's not just for HD.
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HoDeHo

Just had another thought. The Mail on Sunday magazine You often does Real Life features, women telling their stories and often with regard to bereavement or serious medical conditions and that they have written their experiences in a book. So, just in case, You, Northcliffe House, 2 Derry St, London W8 5TS Switchboard: 020 3615 0000. Editor Sue Peart, Asst. Features Editor Rosalind Lowe.
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I downloaded CinV to my Kindle and read it last year.....but just needed to have the hard copy....ordered yesterday from HDA and arrived today...fab! They say they only have 6 copies left....
Thanks Shiraz some great ideas. I have tried a few but not got anywhere although I have thought of writing in to mags/the telly shows etc. Like a lot of people on here, other members of the family are in total denial/in the camp of no publicity lest they get 'outed'. I'd gladly shout out about HD and how proud I am of Steve and others from the highest roof top BUT I have to try thinking of Steve's brother and sister who, as far as I know, are at risk. I can't say I know what has happened, maybe it was the book and my internet pressence but they no longer want to know me. Even Steve's mum stopped sending birthday or Christmas cards. I am still on the same e-mail; phone/mobile number and at the same address but it's like they feel I no longer exist. Their loss lol That said... maybe they don't feel they need to ask about me and Steve where they keep track of me/him on-line?

Banda

Thank you so much for buying the book again! The Kindle version is a bit updated where I was able to make a few changes before hitting the publish button as it's an electronic version. As for HDA now saying they have just a few left... here's hoping my post has brought on a sudden rush of sales
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Old 13-02-15, 10:42 AM   #244
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Default Re: Curse in Verse - the poetry of HD

Hi Trish

It must be so upsetting to feel forgotten by Steve's family. I can only compare it to what happens when you get divorced - in-laws, grandparents, friends and extended family members all vanish from your life. I used to be very close to a sister-in-law and she divorced my brother after decades and just vanished. I phoned her many times but she never called back and I am at a loss as to why! Maybe they think you will move on with your life and don't want to hold you back? Maybe it's painful for them? Maybe I'm doing my usual and always trying to find the good!! So maybe I should shut up
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Old 13-02-15, 11:22 AM   #245
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Hi Trish

It must be so upsetting to feel forgotten by Steve's family. I can only compare it to what happens when you get divorced - in-laws, grandparents, friends and extended family members all vanish from your life. I used to be very close to a sister-in-law and she divorced my brother after decades and just vanished. I phoned her many times but she never called back and I am at a loss as to why! Maybe they think you will move on with your life and don't want to hold you back? Maybe it's painful for them? Maybe I'm doing my usual and always trying to find the good!! So maybe I should shut up
PMSL at that last bit.

You are right, it is like divorce in some ways. I too was very close to my sis in Law (marrried to my brother). We would go out for drinks (me and her/me Steve and her) where we all worked in offices and had a lot in common with each other although my brother worked in construction and didn't get the office politics sh#t that could be just as stressful (if not more so) than lads on a building site having banter

When they divorced I lost one of my best friends in her/and Steve did too bless him. And we gained an #rse of a brother/brother in law. In fact, when he moved back into my mum's home with us it was the start of many problems that led to me and Steve needing to get a place of our own. Lots of positives as well as negatives in our moving but to this day I will never know if life would have been so much easier had we more stability

I'd like to think Steve's family don't need me in their lives because they don't have HD in it. It's sad though that, where Steve's brother didn't make it to the funeral (he had an important work training course that day to attend and they wouldn't let him off apparently) he said he wanted to be at the internment of Steve's ashes when that takes place. Effectively, unless he is keeping track in here or other on-line sources he kind of doesn't care anymore?

I can totally understand their not wanting to care about me. In my book I allude to times I wasn't the best of wives or carers. However, it's sad Steve seems to have been abandoned of sorts. He deserved better than that!

Families are funny things aren't they.
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Old 22-02-15, 04:22 PM   #246
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Default Re: Curse in Verse - the poetry of HD

Four years today since Steve's funeral.

Thought I's share the poem I wrote for him to be read at the Service

Poem for Steve

Your struggle is now over,
You fought it to the end.
I’m sorry my dear darling,
HD I could not mend.

You kept your grace and dignity,
A man so sweet and kind.
The Steve I knew and loved so much,
Was never left behind

It tried to break your spirit,
This thing they call HD,
But never did I hear those words,
“Why did it choose me?”

And in the end, with mercy shown,
Your dignity in death;
God never let you die alone,
I witnessed your last breath.

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Old 09-03-15, 12:08 PM   #247
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Default Re: Curse in Verse - the poetry of HD

While I am in I might as well do another shameless plug for the booky

All reviews welcome

Click HERE for Curse in Verse and Much More Worse.

Written all about Huntington's disease; mine and Steve's stories alongside those inspired by Members of this very Message Board.

And then there is the blog

Click HERE for a blog about Huntington's disease, life after being a carer (and lots of references to life as a carer). Oh... and lots of poems and snaps/slideshows of Steve who inspires me more than anyone on this planet even after changing his form of carbon. XX
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Old 14-05-15, 09:26 AM   #248
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Default Re: Curse in Verse - the poetry of HD

Hi All

My latest Blog can be seen here. A rather long blog with lots of links although I suspect many of you will have seen most of the films/trailers/references already but nice to have in one place.

https://curseinverse.wordpress.com/2...-of-awareness/

TTFN
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Old 15-05-15, 09:42 AM   #249
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Default Re: Curse in Verse - the poetry of HD

Hi Trish

Hope you, Ruby and RubyTuesday all got through the sadness of yesterday with the comfort of many happy memories of your beloved Steve.

I just finished reading through your latest blog and many of its various links. Extremely thorough and interesting and informative and, in parts, funny. Sad too. I'd recently seen an advert on TV for 23andme and wondered at the merits of it. In many ways I feel it's a moneymaking scaremongering whatnot - bit like all these companies popping up and charging hundreds of pounds to tell you if you might be at risk of a heart attack/stroke etc in 10 years time.

Hope you are well dear lady x Don't forget to feed & flea the moggies
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Old 18-05-15, 09:34 AM   #250
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Hi Trish

Hope you, Ruby and RubyTuesday all got through the sadness of yesterday with the comfort of many happy memories of your beloved Steve.

I just finished reading through your latest blog and many of its various links. Extremely thorough and interesting and informative and, in parts, funny. Sad too. I'd recently seen an advert on TV for 23andme and wondered at the merits of it. In many ways I feel it's a moneymaking scaremongering whatnot - bit like all these companies popping up and charging hundreds of pounds to tell you if you might be at risk of a heart attack/stroke etc in 10 years time.

Hope you are well dear lady x Don't forget to feed & flea the moggies
Hi Shiraz

Thanks hunny.

I am well and the cats are well (they are no trouble at all
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