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Old 17-02-12, 01:30 PM   #101
jo
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Default Re: Curse in Verse - the poetry of HD

thanks trish i realy must buy your books they r a comfort and i must buy the selfish pig book too . take care love jo xx
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Old 17-02-12, 02:49 PM   #102
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Default Re: Curse in Verse - the poetry of HD

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thanks trish i realy must buy your books they r a comfort and i must buy the selfish pig book too . take care love jo xx
Thanks Jo

I hope the two books complement each other. Apart from wanting to capture the advice and experiences on here by using poems/prose as snapshots of a situation, a lot of my inspiration came from reading Hugh's book.

I sat there with the "why didn't anyone ever tell me this before? " thoughts running through my head for the practical side of it and the "Thank God it's not just me!" thoughts too.

Knowing Hugh has first hand experience with handling HD where it affects his wife made it so valuable as he gets it!

Both books are available through the HDA Book Shop or Amazon. Amazon Link here for Hugh's book in case anyone wants details (Amazon Links give a bit more detail/previews hence usually liinking to Amazon for info but other sources are available.

http://www.amazon.co.uk/Selfish-Pigs...9486422&sr=1-1
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Old 17-02-12, 05:59 PM   #103
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Default Re: Curse in Verse - the poetry of HD

thanks again trish i do love amazon i get alot from it there was a few books on there were you could read i read a book on there about a family story of them with hd can't rember what it was called there is also a book i would love to read its on jhd but its so expensive £80 i think it was. need to go to a libary i think not sure if they would have much on hd take care jo x
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Old 18-02-12, 11:27 AM   #104
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Default Re: Curse in Verse - the poetry of HD

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thanks again trish i do love amazon i get alot from it there was a few books on there were you could read i read a book on there about a family story of them with hd can't rember what it was called there is also a book i would love to read its on jhd but its so expensive £80 i think it was. need to go to a libary i think not sure if they would have much on hd take care jo x
The books I think you mean are:

Learning to Live with Huntington's Disease: One Family's Story

http://www.amazon.co.uk/Sandy-Sulaiman/e/B001JP7IPA

and

Juvenile Huntington's Disease: and other trinucleotide repeat disorders

http://www.amazon.co.uk/Juvenile-Hun.../dp/0199236127

The latter book is dropping in price but is still quite expensive. When I flagged it up on the JHD Forum I did put in a suggestion that the HDA consider having a loan library. Maybe it's worth checking with your RCA if they have access to a copy?

Whilst looking for the links I noticed the HDA now advertise a book called HD in Children and Teenagers. Written by Neil Glendinning

http://hda.org.uk/shop/hda-books.html

Did you know about this book?
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Old 18-02-12, 08:38 PM   #105
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Default Re: Curse in Verse - the poetry of HD

yeh trish there the books . no i didnt no so i shall ask diane when i next see her thanks and the other 1 i was looking at is whats wrong with daddy or why is daddy diffrent there r lots of books out there . so not sure witch would be best it would be good if money was going to a good charity dont mind then love jo xx
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Old 18-02-12, 10:07 PM   #106
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Default Re: Curse in Verse - the poetry of HD

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yeh trish there the books . no i didnt no so i shall ask diane when i next see her thanks and the other 1 i was looking at is whats wrong with daddy or why is daddy diffrent there r lots of books out there . so not sure witch would be best it would be good if money was going to a good charity dont mind then love jo xx
I think you mean this one.. Why is Daddy Diffferent

http://www.amazon.co.uk/Why-Daddy-Di...97204&sr=8-1#_

The book is aimed at young children and is a nice little book but I wouldn't recommend it for showing childen with JHD. This is just my personal view but I base it on this snap shot of the storyline/content below.

That's not to say it doesn't have a place as a wonderful tool for explaining HD to children in some of the circumstances but it obviously reflects Amy's personal story and her own life with HD in the family.

The book has 21 pages and some wonderful drawings. The cover (on the link) is indicative. It's short on words but very powerful.

Section 1

The mother explains to the children daddy cannot help his movements and he wasn't always like that. The little girl says 'I wish I could remember those days'.

Section 2

The little girl recounts her Daddy has outbursts... Sometimmes the Police came to calm him down and is worry he may hit her. The Mother has explained he can't help it and would 'never hit anyone if he knew what he was doing'.

Section 3

This briefly covers that the little girl has problems understanding her daddy 'It is like the words are trapped in his brain'.

There is a sad but beautiful cartoon representation where the kids are looking at their dad. He is on a chair and the thought bubble shows the words 'I LOVE YOU' yet the words are behind the bars of a cage.

Section 4

This covers the need to do things in a particular order (OCD etc) and the little girl wouldn't expect her friends to understand as she doesn't understand them herself. 'Even though these things do not make sense to anyone, his mind thinks they are normal'.

Section 5

This gives a very brief outline that daddy has something wrong with his brain but the little girl asks why he cannot take medicine as she would do if sick?

Section 6

Here we are told he will get worse. It is also sad where it reads ' I tell my mommy that I hate him and wonder why she sticks around..... She says I need to hate what he does not who he is'.

Section 7

Here daddy has had to go to a nursing home 'My moomy didn't want it but is was her only option'.

Section 8

Here the Daddy is now in a wheelchair and cannot swallow very well.

Section 9

Here she covers the fact it is hereditary and she may also get it. It then goes on to say about the Bible and Jesus will be there for her whatever happens.

Section 9

This mentions the best thing is to 'talk to someone about how you feel.'

The Section then closes with

My daddy no longer lives on this Earth but I know that he is in Heaven. Even though he could not always show it, I know that he loved me. I know that when I get to Heaven, I will get to meet the daddy I never knew. He will not be sick anymore and he can just be my daddy.

All in all a sad little book but then HD is a sad subject and it is a loving attempt to explain the things that obviously went through her own mind and how they coped.
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Old 19-02-12, 02:13 AM   #107
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Default Re: Curse in Verse - the poetry of HD

thank you very much for this trish means alot what you have done trish my son is 12 years old he does'nt no he has hd we r still comeing to terms we this r selfs he has the mental age of 7 how do you ever explain this to young kids i can't it is killing me seeing him this way and to no that 1 day my little girls could get it r family life has been distroyed and im not going to get it back .unless a cure is found and fast thank you love jo x
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Old 19-02-12, 12:54 PM   #108
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Default Re: Curse in Verse - the poetry of HD

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thank you very much for this trish means alot what you have done trish my son is 12 years old he does'nt no he has hd we r still comeing to terms we this r selfs he has the mental age of 7 how do you ever explain this to young kids i can't it is killing me seeing him this way and to no that 1 day my little girls could get it r family life has been distroyed and im not going to get it back .unless a cure is found and fast thank you love jo x
My heart goes out to you Jo, and all the families facing the Juvenile form of HD. It's the cruelest of the cruels.

I know what you mean when you say there are so many books out there but which one?

The ones that I have seen listed/come across (see below link which I assume you may alreayd have seen) doesn't seem to target children WITH the attributes of HD already. They help explain HD and the factors of being at risk but, at a glance of the descriptions, hold back on talking to children about why they have it now. Possibly too hard a task?

I know when I was in discussion with Cath; Bill; Matt and Virgina re' the book the HDA are doing for children it is a minefield trying to balance wanting to tell the truth and not wanting to alarm.

I will keep on the look out and let you know if I hear of anything that may be useful. If others are able to comment on books they have read/read about it would be very welcome.

http://huntingtondisease.tripod.com/hdlinks/id18.html
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Old 19-02-12, 01:33 PM   #109
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Default Re: Curse in Verse - the poetry of HD

i must thank you again that will be great love jo x
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Old 19-02-12, 01:57 PM   #110
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i must thank you again that will be great love jo x
No need to thank me.

I bought a lot of books along the way and I love doing sourcing as it's in my blood having studied several years to get an actual Degree in Buying Member of The Chartered Institute of Purchasing and Supply before I gave it all up to work on being an amateur Carer, progressing to aspiring 'Know It All'
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