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Old 02-02-12, 11:57 AM   #91
Trish
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Default Re: Curse in Verse - the poetry of HD

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Hi Trish

Thinking of you

I really think that there's loads of great advice in your book as well as lots of poems that hit the nail on the head in lots of ways.

Dolphin
Thanks Mrs

Still here with the cats and plodding along contented to wait and see what the next project may be...

'HD in prose from one wot thinks she almost knows' is a title that comes to mind I have definately lost touch with reality and could recount from my days of drinking too much alcohol for the balance issues and lack of spacial and social awareness that's for sure
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Old 02-02-12, 08:06 PM   #92
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Default Re: Curse in Verse - the poetry of HD

Hi Trish

Glad you are ok, I have just read your poem for Steve, it is lovely, I cant believe its made me cry, I have never met you or Steve, but I feel I know you like a friend. Take care of yourself, and I hope this year will be better for you.

Take care xxxxxx
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Old 02-02-12, 11:03 PM   #93
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Default Re: Curse in Verse - the poetry of HD

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Hi Trish

Glad you are ok, I have just read your poem for Steve, it is lovely, I cant believe its made me cry, I have never met you or Steve, but I feel I know you like a friend. Take care of yourself, and I hope this year will be better for you.

Take care xxxxxx
Thank you hun.

Sorry the poem made you cry but I suppose if it didn't touch people then it wouldn't have been as much of a tribute to Steve as I wanted it to be. I wish I had dug out those snaps a few years before Steve died and looked at them better. He was always in there... I just couldn't see past the HD at times.

It's a shame we didn't get to meet on my kind of London Open Day but I hope to be able sort out another one of those at some stage. I'm glad you think of me like a friend.
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Old 02-02-12, 11:21 PM   #94
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Default Re: Curse in Verse - the poetry of HD

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Thank you hun.

Sorry the poem made you cry but I suppose if it didn't touch people then it wouldn't have been as much of a tribute to Steve as I wanted it to be. I wish I had dug out those snaps a few years before Steve died and looked at them better. He was always in there... I just couldn't see past the HD at times.

It's a shame we didn't get to meet on my kind of London Open Day but I hope to be able sort out another one of those at some stage. I'm glad you think of me like a friend.
Maybe one day we may meet, I guess like you say HD takes over your life, now you have the memories and I am so glad you can start to look beyond the HD memories and remember the good times and the person Steve really was and the reason you fell in love with him. I think it made me sad, as I am just on the journey, I try and hang on to the good times that were there two years ago, hoping they will return but knowing in my heart they are gone, at the moment I struggle to see past the anger, I feel, hubby is changing and I get so irratated by him and the HD, but he cant help it and neither can I. Sadness takes over, and when I read your blogs and your poems it makes me think of what lies ahead and what a brave person you have been. xxxx
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Old 02-02-12, 11:25 PM   #95
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Default Re: Curse in Verse - the poetry of HD

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Hi Trish

Thinking of you

I really think that there's loads of great advice in your book as well as lots of poems that hit the nail on the head in lots of ways.

Dolphin
Thanks for mentioning the advice element. Sometimes I think I should have omitted the poetry description as that tends to put people off but the poems were always guises to get a sort of public service announcement out there

I knocked up this one earlier. It's not in the book but it's a way of getting info out there (RADAR Key on this occasion). The Kindle version of the book mentions RADAR keys now in the opening paragraphs.

THE RADAR KEY

The slowness of the pace he sets, when having trouble walking;
The blocking out the background noise, to hear when he is talking;
The need to just buy something and decisions made in haste;
Annoyance that some money spent would clearly lead to waste.

A Shopping Centre full of goods, such lovely things to buy,
And yet there is no time to browse, she thinks that she could cry!
No point in speeding up the pace, his weariness is growing,
Instead she holds back pushing forth, compassion finally showing.

“Let’s get a cuppa and a cake”; He looks at her relieved;
They find a place to sit him down, his grateful body heaved.
Mugs of coffee served for both, they’re filled up to the hilt;
She takes a few sips of his too, to save from being spilt.

They take their time to eat and drink, ‘fast food’ now in the past;
Grateful for no accidents, she’ll hold back saying “at last!”
Before they go much further though, there’s one thing they must do,
She knows he’ll now start panicking if they don’t find a loo!

Disabled loo just to the left, she helps him to his feet;
No need to ask for opening, their visit is discrete.
The cubicle is big and clean, he’s safer with her there;
She helps him with his clothing now, another part of care.

A RADAR KEY was bought by her to help in times of need.
A simple thing to buy on-line and very cheap indeed!
Disabled loos are accessed now, when needed for ‘relief’.
She just looks out for RADAR signs, it’s one less added grief!


Link for RADAR Keys and info:
http://radar-shop.org.uk/Detail.aspx?id=0

Never forget, when ordering equipment you can normally apply for VAT exemption. It's always worth ticking the VAT Exempt Box for diagnosed HD or completing an Exemption Form which disability goods sellers usually flag up on their sites.

And book link here:
http://www.amazon.co.uk/Curse-Verse-.../dp/1908105097

Happy to take suggestions for other subject matters.


PS... I need to work out again how to do quick links lol
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Old 05-02-12, 12:04 PM   #96
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Default Re: Curse in Verse - the poetry of HD

just popped in and wanted to show support Trish...

keep strong!

Brian.
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Old 05-02-12, 07:23 PM   #97
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Default Re: Curse in Verse - the poetry of HD

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just popped in and wanted to show support Trish...

keep strong!

Brian.
Thank you Brian

I hope you are keeping as well as can be expected. Nothing is ever the same again as you say
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Old 14-02-12, 06:06 PM   #98
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Default Re: Curse in Verse - the poetry of HD

I did another poem to mark Valentine's Day.

The link below will open the poem in another site. Bit of a sad poem I'm afraid and I wrote it first thing this morning but have had tea and chocolate cake and a few hugs on Facebook so am feeling a bit less sorry for myself although I appreciate it's been a sad day for many others in here too.

http://authspot.com/poetry/the-widow...ntine/#Scene_1
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Old 14-02-12, 06:29 PM   #99
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Default Re: Curse in Verse - the poetry of HD

that is a sad poem trish . ah ho i have a partner of 15 years hun no card no flowers no chocs . there only things i have him thats all that matters for now take care trish x it must be hard days like these my little lad is still here but feel like im greaving for him i hate jhd/hd xx
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Old 17-02-12, 07:07 AM   #100
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Default Re: Curse in Verse - the poetry of HD

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that is a sad poem trish . ah ho i have a partner of 15 years hun no card no flowers no chocs . there only things i have him thats all that matters for now take care trish x it must be hard days like these my little lad is still here but feel like im greaving for him i hate jhd/hd xx
Thank you Jo.

I'm so sorry that you are going through 'anticipatory grief'. You are grieving hunny and it's even sadder that you are grieving for the future as well as the past.

Not the same I know where this poem is about relationship of a different kind but when Brian first mentioned 'anticipatory grief' a while back on Messy Board my brain went "Bingo"! I am not going mad to feel this way... I am allowed to feel this while Steve is still here with me allowed and not feel guilt that I am even thinking this way.

I'd not heard of it being a recognised condition before but it is now accepted as something real. This is extracted from the Book.

http://www.amazon.co.uk/Curse-Verse-.../dp/1908105097

The Grief

Introduction

In 1969 Dr Elizabeth Kübler-Ross, a Swiss born American psychiatrist, wrote a best-selling book called ‘On Death and Dying’. Dr Kübler-Ross dedicated her career to closely studying the emotional and psychological needs of the terminally ill. In her work she went on to describe five stages of grief.

Interpreted very loosely they cover:-

Denial: "This can’t be happening to me!”

Anger: "Okay... It’s happening... I didn’t do anything wrong or deserve this so who do I blame for this?”

Bargaining: "Okay, you win... I accept it is happening but let’s come to some arrangement here.
If I promise to live a better life now and give up something will you just let me live to see another birthday?”

Depression: "I may as well give up. I’ve run out of answers. I can’t do anything so why bother with
anyone or anything?”

Acceptance: "We have all got to die one day. My time just happens to be sooner than others. I am
ready. I am at peace with what is coming".

Although the observations of Dr Kübler-Ross were based on people dying of cancer in hospital, her findings could easily be considered to apply to the phases of grief in many other circumstances of death, and indeed life.

It’s very sad that HD is referred to as a terminal disease. It normally takes many years from onset of being symptomatic to death itself. However, with no cure at present, telling someone they have tested positive or are even just at risk it may have just as much of a devastating impact. As if telling the person they have a disease with a very short life expectancy.

And then there is the Anticipatory Grief element. The following has been taken from a Cruse Bereavement Care training brochure:

‘What is anticipatory grief?

Lindermann (1944) first used the term.

Anticipatory grief as a concept is interpreted in different ways:

- Relating to grief that occurs in preparation of impending death

- A journey towards the ultimate loss through a death, but is composed to adjusting to many losses, of the past, present and future.’

Everyone deals with grief differently; be it after the actual death of a person or anticipatory grief. The following poem was written as a kind of duet. Both parties grieving for the same things but in different senses. It is ultimately about anticipatory grief. The person with HD himself grieving as much as the carer. The loss of self being acknowledged here.

I do miss and grieve for my husband but because of how the disease was, and how I feel it would be selfish to wish he were back here now, it feels wrong to mourn him in many ways. It’s strange but it feels as though because of the anticipatory grief I have moved straight on to Stage five:

Acceptance:
"We have all got to die one day. His time just happened to be sooner than others. I am ready, as I have to believe he was, and I am at peace with what happened to him".

Will the other phases come back to hit me like a tonne of bricks? We shall have to wait and see...


Her to Him

I grieve for the man I used to know;
I grieve for the places we once used to go;
I grieve for the life we shared together;
I grieve for the wit from one so clever.

Him to Her

I grieve for the man I used to be;
I grieve for the places I’ll never see;
I grieve for the walks held hand in hand;
I grieve for the wit I no longer command.

Her to Him

I grieve for the times, both good and bad;
I grieve for the intimacy we once had;
I grieve for the future we’ll now never see;
I grieve for the loss of you and me.

Him to Her

I grieve for the memories once in my head;
I grieve for loss of you in my bed;
I grieve for loss of planning my life;
I grieve for the loss of you as my wife.

Together

The saddest part is it wasn’t the dying,
That led to the grief and the sorrow and crying;
This grief has been growing in you and in me,
From the very first day that we heard of HD.
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