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Old 24-02-13, 01:35 PM   #181
Trish
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Default Curse in Verse - the poetry of HD

Time for another book bump

Available in paperback and Kindle via AMAZON and also the HDA Bookshop

I regularly check on sales ranking a' la Amazon and now and again get pleasantly surprised where someone has kindly taken the time to right up a review There was a new one done 2 days ago. Than you whoever you are

Today I thought I would share the reviews on the book so far.

All have been on the back of 5 star ratings which is very generous. If anyone has written a review which doesn't appear below (even if it's a bad one!) please do let me know/share on here. I don't get alerts to reviews and tend to stumble across them so please don't feel I am only highlighting good reviews, I am genuinely pleased to get any reviews no matter good or bad. It's also important that others hear people's views. I'm someone who reads reviews of books before buying which I am sure has saved me a lot of money over the years

This book is Enlightening, devastating, fascinating and uplifting

I thoroughly recommend this book if you want to really grasp the impact of a ruthless genetic brain disorder on individuals and families, and how people deal with the challenges it poses. The book is so well written with informative explanations and discussions heading up thoughtful, insightful, sometimes cutting, sometimes witty poetry.

This doesn't have to be read cover to cover in one go, but be careful if pushed for time- you might find you can't put it down. It can be dipped in to- I am doing that and I find after taking on board one short poem, I have so much to absorb from it and think about. It's deep and provocative, but the style is light, and very digestable, and enjoyable. It's definately not doom and gloom, it is most uplifting and sometimes hilarious--- I love 'The Dyno Rod'... so true, so funny.

It is about living with Huntington's disease, but it is about dealing with whatever life throws at you, even if actually, you have no personal connection to HD. If you do, this could be a great aid to get you through. Some tricky topics are faced--- Trish is not afraid to consider sticky issues such as animal experimentation; difficulties for individuals surrounding being gay; being HIV positive; problems with insurance... OK, enough from me. My favourite at the moment is 'The Magic of Music'... how friends find that from a deteriorating prematurely old frame, music draws out their old mate. Enjoy the read.’

An insightful look at caring for a loved one.

A wonderfully talented writer's experiences , thoughts and insight into the tough(but she wouldn't have done it any differently ) role of caring for her beloved husband as he battled Huntington's Disease.

Sadness, tears, laughter, fear and grief, a rollercoaster ride of emotions .The Author went through them all. Her thoughts and honesty are outstanding.
A bittersweet and cleverly written book for all , and one to offer comfort during the demanding but worthwhile role of caring for a loved one.’

Wonderful,

This is a wonderful book. It is amazing, emotional, insightful, thoughtful all at the same time. It gives a perspective into Huntington's Disease that no one else has been able to achieve. If you are a carer, read this book. If you are HD+, read this book. If you know someone that has Huntington's Disease, read this book. You will read, learn, cry and be amazed all at the same time.

Essential reading, and the bench mark of its genre.’

A Moving Tribute to HD Sufferers and their Carers,

Trish has put her whole heart and soul into this work which so vividly and compassionately describes in verse and prose the various stages, problems, heartaches and desperate hopes that are 'part and parcel' of this terrible disease.’

Sympathetically Written Account of just one HD sufferer and his family,

I can completely identify with Trish's verses, some are amusing and some poignant. If anyone reading this has anyone or knows anyone suffering from Huntingtons then this is the read for you.’

Simply a wonderful book...,

Trish cared for her late husband Steve through his long course of Huntington's Disease. This book, however, is about so much more. It's a love story. The depth of love she has for her husband just oozes from the pages. It's about caring for anyone you love who has a progressive disease and/or progressing disability and dependence on others for care. That includes aging.

It's about caring love and providing care and all that it entails. Respect and admiration for the one in your care and the courage and endurance they have. It's about all the little challenges carers face that annoy, befuddle and sometimes bemuse them. It's about precious moments as well as mundane moments. It's a how-to manual for the carer to appreciate all they give and all they give up...and some tricks of the carer's trade.

It's both prose and poetry but the poems will stick with you. I suspect that anybody who reads it will be touched by how she captures moments that you never thought were shared by anyone else.

I could go on and on about how this book touched me. Suffice it to say, if you've got so far as to read this review, just buy the book. It is very unique in its ability to encourge you when life as a carer looks pretty discouraging. If you're facing a progressive disability yourself, I suspect you'll draw some reassurance from seeing how much love and care can be showered upon you.’

Wonderful!,

Having only been diagnosed with huntingtons disease 9 months ago, Ive been at war with my own mind knowing of the future. This book I bought to just see how HD can be expressed in poetry and I was surprised, I laughed, I cried, and I related to nearly every single poem if not because I feel it it was because I lived with it with my mum.. Even if you dont suffer with HD, or live with it or have it in your family, its beautifully written and Ive suggested it to many members of my family/friends etc :)’

Great book,

This is a wonderful read, especially of you are, or know of, someone with HD/JHD. All the love and heartbreak are expressed beautifully.’

‘Wonderful book of poetry that educates too,

After losing my mother to Huntington's Disease I purchased this book to do the right thing and spend her money supporting those touched by HD. I ended up with a book that will remain on my bookshelf through hell and high waters because I won't get rid of it.

Trish was a carer for her husband Steve, who suffered from HD. In this book she shares, through prose and poetry, her experiences battling HD. It is clear through her poems that she was at war against this disease as much as her husband.

The book is so powerful I highly recommend it to anyone who is suffering from a serious illness, as well as to their carer.

I only wish I had this book when caring for my mother. Then I would have understood so much clearer what she was going through.’

Great poems, Great info. Great !!

If you want to know more about HD, how it affects those who suffer and those who care, then read this book.
A good cover to cover read but easily dippable for the odd snippit on a particular topic.

I feel Trish has been very open about her experience with her late husbands HD. What I love is that she is not afraid to share the nitty gritty, the 2am view on what it's like to care for someone with such complex and ever changing needs. The times when shes almost ready to chuck in the towel but didn't.

Not only has the Author shared her own personal story but she has managed to include a very generalised and informative explaination of how differing the effects of this disease can be in different people. Topics covered include trying to get insurance to being viewed by the general public as a drunkard. Love it and glad I bought it.’
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Old 01-03-13, 03:10 PM   #182
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Default Re: Curse in Verse - the poetry of HD

Got another book review today. A 4 star one but that's still brilliant. I recognise the name as someone I used to work with. He's obviously had a bit of an eye opener into what goes on behind closed doors now bless him

Red review below:

'Love and frustrations laid bare'


' This is not simply a book of poetry and prose. I found it to be a highly informative, touching, humorous and often disturbing view into the lives of the sufferers of Huntington's disease and their carers. '


Available in paperback and Kindle via AMAZON and also the HDA Bookshop

This book is Enlightening, devastating, fascinating and uplifting

I thoroughly recommend this book if you want to really grasp the impact of a ruthless genetic brain disorder on individuals and families, and how people deal with the challenges it poses. The book is so well written with informative explanations and discussions heading up thoughtful, insightful, sometimes cutting, sometimes witty poetry.

This doesn't have to be read cover to cover in one go, but be careful if pushed for time- you might find you can't put it down. It can be dipped in to- I am doing that and I find after taking on board one short poem, I have so much to absorb from it and think about. It's deep and provocative, but the style is light, and very digestable, and enjoyable. It's definately not doom and gloom, it is most uplifting and sometimes hilarious--- I love 'The Dyno Rod'... so true, so funny.

It is about living with Huntington's disease, but it is about dealing with whatever life throws at you, even if actually, you have no personal connection to HD. If you do, this could be a great aid to get you through. Some tricky topics are faced--- Trish is not afraid to consider sticky issues such as animal experimentation; difficulties for individuals surrounding being gay; being HIV positive; problems with insurance... OK, enough from me. My favourite at the moment is 'The Magic of Music'... how friends find that from a deteriorating prematurely old frame, music draws out their old mate. Enjoy the read.’

An insightful look at caring for a loved one.

A wonderfully talented writer's experiences , thoughts and insight into the tough(but she wouldn't have done it any differently ) role of caring for her beloved husband as he battled Huntington's Disease.

Sadness, tears, laughter, fear and grief, a rollercoaster ride of emotions .The Author went through them all. Her thoughts and honesty are outstanding.
A bittersweet and cleverly written book for all , and one to offer comfort during the demanding but worthwhile role of caring for a loved one.’

Wonderful,

This is a wonderful book. It is amazing, emotional, insightful, thoughtful all at the same time. It gives a perspective into Huntington's Disease that no one else has been able to achieve. If you are a carer, read this book. If you are HD+, read this book. If you know someone that has Huntington's Disease, read this book. You will read, learn, cry and be amazed all at the same time.

Essential reading, and the bench mark of its genre.’

A Moving Tribute to HD Sufferers and their Carers,

Trish has put her whole heart and soul into this work which so vividly and compassionately describes in verse and prose the various stages, problems, heartaches and desperate hopes that are 'part and parcel' of this terrible disease.’

Sympathetically Written Account of just one HD sufferer and his family,

I can completely identify with Trish's verses, some are amusing and some poignant. If anyone reading this has anyone or knows anyone suffering from Huntingtons then this is the read for you.’

Simply a wonderful book...,

Trish cared for her late husband Steve through his long course of Huntington's Disease. This book, however, is about so much more. It's a love story. The depth of love she has for her husband just oozes from the pages. It's about caring for anyone you love who has a progressive disease and/or progressing disability and dependence on others for care. That includes aging.

It's about caring love and providing care and all that it entails. Respect and admiration for the one in your care and the courage and endurance they have. It's about all the little challenges carers face that annoy, befuddle and sometimes bemuse them. It's about precious moments as well as mundane moments. It's a how-to manual for the carer to appreciate all they give and all they give up...and some tricks of the carer's trade.

It's both prose and poetry but the poems will stick with you. I suspect that anybody who reads it will be touched by how she captures moments that you never thought were shared by anyone else.

I could go on and on about how this book touched me. Suffice it to say, if you've got so far as to read this review, just buy the book. It is very unique in its ability to encourge you when life as a carer looks pretty discouraging. If you're facing a progressive disability yourself, I suspect you'll draw some reassurance from seeing how much love and care can be showered upon you.’

Wonderful!,

Having only been diagnosed with huntingtons disease 9 months ago, Ive been at war with my own mind knowing of the future. This book I bought to just see how HD can be expressed in poetry and I was surprised, I laughed, I cried, and I related to nearly every single poem if not because I feel it it was because I lived with it with my mum.. Even if you dont suffer with HD, or live with it or have it in your family, its beautifully written and Ive suggested it to many members of my family/friends etc :)’

Great book,

This is a wonderful read, especially of you are, or know of, someone with HD/JHD. All the love and heartbreak are expressed beautifully.’

‘Wonderful book of poetry that educates too,

After losing my mother to Huntington's Disease I purchased this book to do the right thing and spend her money supporting those touched by HD. I ended up with a book that will remain on my bookshelf through hell and high waters because I won't get rid of it.

Trish was a carer for her husband Steve, who suffered from HD. In this book she shares, through prose and poetry, her experiences battling HD. It is clear through her poems that she was at war against this disease as much as her husband.

The book is so powerful I highly recommend it to anyone who is suffering from a serious illness, as well as to their carer.

I only wish I had this book when caring for my mother. Then I would have understood so much clearer what she was going through.’

Great poems, Great info. Great !!

If you want to know more about HD, how it affects those who suffer and those who care, then read this book.
A good cover to cover read but easily dippable for the odd snippit on a particular topic.

I feel Trish has been very open about her experience with her late husbands HD. What I love is that she is not afraid to share the nitty gritty, the 2am view on what it's like to care for someone with such complex and ever changing needs. The times when shes almost ready to chuck in the towel but didn't.

Not only has the Author shared her own personal story but she has managed to include a very generalised and informative explaination of how differing the effects of this disease can be in different people. Topics covered include trying to get insurance to being viewed by the general public as a drunkard. Love it and glad I bought it.’
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Old 10-03-13, 10:34 AM   #183
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Default Re: Curse in Verse - the poetry of HD

Bumping up this thread again not just to flag up the book but hopefully to get more signatures too.


Please sign HERE

In my book I had previously written a poem called The Benefit Cheat (See below)

I do agree the government - whatever their flavour - need to do something to free up money where sadly there are those with no illness of any kind are abusing the system. My poem was a way of getting across that the denial side of HD makes this one of those illnesses where people like Steve leave it as late as possible to ask for help. Steve would have done anything in his power not to have been a percieved 'burden' to the state.

The Benefit Cheat

Introduction

I opted to put ‘The Prescription’ in this Section as I felt there was a social injustice issue in it. It occurred to me instead of assisting and wanting to enable those with HD and their families/carers to get financial support, there seemed to be a suspicion that everyone out there was just in it for what they could get. I shall resist the urge to comment on the pros and cons of the current changes in the benefits system as at April 2011.

In our case, the denial aspects of HD meant we did not claim for anything more than Job Seekers Allowance (JSA), or get any real support until actual diagnosis. This was despite it being acutely obvious the illness was taking hold and radically impacting on our finances.

At the time a specialist was seen, and was blood drawn (17th March 2005), my husband was on JSA and had been so since 2003. The poor man had been laid off many jobs, no doubt due to his performance getting worse, yet they did not know there was an underlying cause. He was still convinced someone would employ him until April 2005. I had to sit down with him at the Jobcentre and, with the help of his Advisor who was by now aware of the Huntington’s explaining his struggles, tell my husband he would never work again. He was then put on Incapacity Benefit and I applied for Disability Living Allowance for him. Just over a year later I applied for Carers Allowance when I had to cease work to look after him full time.

This poem is not about benefit cheats in the sense that society tend to think of... Scroungers; spongers; fraudulent etc. Denial of HD can lead to support being withheld understandably as it has not even been claimed for. That’s not to say it isn’t much needed, it might be that it’s a case of those in real need are being cheated of benefits, by reluctance to accept it is time...


The HD now affects his brain;
His office getting worried.
Relationships begin to strain;
His exit now gets hurried.

With wife aware his time is short,
And skills get more diminished,
She hasn’t got the heart to say,
His working life is finished.

Their income now is cut in half;
They can’t afford their pride.
He could apply for further help,
If HD weren’t denied.

The benefits kick in at last,
When diagnosis made.
No mention though of all funds,
The system could have paid.

Taken from CURSE IN VERSE AND MUCH MORE WORSE
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Old 17-03-13, 12:07 PM   #184
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Default Re: Curse in Verse

Remember this poem?

The Prevalence

Introduction

On June 30th 2010 The Lancet published an article by Sir Michael Rawlins, Chairman of the National Institute of Health and Clinical Excellence (NICE). The article, entitled ‘Huntington’s disease out of the closet?’ underlined the need to pin down more data on the real prevalence of HD.

As a lay person reading the article, Sir Michael raises questions about the possible underestimation in the prevalence of HD. A prevalence estimate of 12.4 per 100,000 of the population of England and Wales was given as a minimum, based on the HDA having 6,702 diagnosed cases of HD on their books at the time of calculating.

Sir Michael highlights gaps in the capture of numbers where the HDA could not be expected to know of all cases of HD in England and Wales. The figures known could only formally be based on referrals from health practitioners. The stigma surrounding the disease means many people do not seek diagnosis, either through fear of the outcome or through ignorance of the disease being in the family and/or its inheritance risk.

The article also spoke of the need to better know the numbers in order to plan for the future. Finance and resources need to be made available to cope with the complex needs of HD. Not just in terms of the symptomatic patient, but those at risk, whether or not going through the testing stages.

Alongside the above, Sir Michael raises the need to tackle the disease head on by increasing research resources. By investing more in research to delay or ultimately stop progression, which needs far more concentration on pre-symptomatic patients, the drain on resources and strain on families will be less in the future.

Just out of interest, I posted up on the HDA Message Board a question.

I asked Members to add stories of instances where they had randomly come across others affected by HD. Bearing in mind how rare this disease is said to be...

Within a short space of time, a number of Members came along with stories of coming across HD by chance, This included one lady whose first cousin met and married a man with HD just as she had. However, the husbands were from different towns and totally unrelated. Then there was her neighbour who had worked with a man who had HD, and then there was a young man attending the same school as her grandchild who also had HD in the family.

For my own part, my husband’s friend at school married a woman with HD in her family; my brother-in-law’s ex girlfriend’s adopted father had HD; a friend of mine only recently discovered a HD link to foster children he grew up with, and our local Jeweller’s father-in-law had HD. I found that out when having my husband’s wedding ring changed where his weight had plummeted and mentioned HD was why there would be a hand tremor.

Last but not least... Since writing the original version of this book in paperback I have discovered another amazing link!

The woman presiding over mine and Steve’s wedding at Wandsworth Registry Office on November 25th 1988, and whose name is signed on our wedding certificate, had HD! I only discovered this when coming across her daughter through the HDA Message Board.

I do accept if someone is looking for something then they are much more likely to find it, but surely the odds of coming across totally unrelated cases of HD shouldn’t be that high if it is meant to be that rare?

“He fell again”, says the wife on the phone,
As she chatters with her husband’s brother.
“Tell him to take it with water next time,
He’s beginning to sound like our mother”.

The father had walked out on mother years back;
The boys had blamed that on her drinking,
What they couldn’t have known was depression and booze,
Was just part of her balance and thinking.
When seeing the Doctor several weeks on,
He’s asked if there’s anything known,
Of similar traits in the family tree,
Where examples of things can be shown.

“None at all” says the husband,
Believing he’s first to have something they cannot explain;
Not aware of the gene that was passed down the line,
As the doctor asks questions in vain.

Unbeknown to the boys in a town far away,
Their step-sister had hidden the news,
She’d worked out for herself that their mother was ill,
But was too scared to tell them her views.

Having married a man who had worked in a place,
Where a colleague with HD had been,
They discussed the disease, and with unnerving ease,
She identified symptoms she’d seen.

With awareness she’d found that HD was renowned,
To have stigma and keep itself ‘hid’;
And with step-brother’s children to add to dilemma,
She opted to keep on a lid.

So for several years more the oblivious sibling,
Was on his GP’s door still knocking;
With tests and prescriptions signed off all the while,
And their NHS costs which were shocking!

When finally everything else is ruled out,
And Huntington’s comes in to play,
The step-sister mentions she’d known all along,
But was worried about what to say.

The budget forecasts are due in next month,
He puts ‘1’ in the ‘Cases – HD’,
But he knows with the mother, and children and brother,
The Doctor could count at least three!

Looks like the British Medical Journal have published findings that support what the HDA and many of us in HD Land have been saying for years. HD is far more prevalent than the Gov't figures previously suggested.

Abstract here

Curse in Verse - Amazon (Other bookshops are stocking)

Curse in Verse - Amazon Kindle

Also available from the HDA Book Shop[/QUOTE]
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Old 24-03-13, 08:16 AM   #185
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Default Re: Curse in Verse - the poetry of HD

Time to bump up my book again and also the E-Petition.

Quote:
Originally Posted by Trish View Post
As many of you will be aware, my latest attempt to fight for the HD cause is being focussed on the Work Capability Assessment issue.

I am so grateful that WCA was not a maze Steve had to try finding his way around. I would have been holding his hand through it of course, or pushing his wheelchair depending upon his stage of symptoms. However, I would have been well aware that the current system is flawed and been dreading its process. I a in no doubt it would have been to the detriment of mine and Steve's mental and physical health!

Please sign HERE

In my book I had previously written a poem called The Benefit Cheat (See below)

I do agree the government - whatever their flavour - need to do something to free up money where sadly there are those with no illness of any kind are abusing the system. My poem was a way of getting across that the denial side of HD makes this one of those illnesses where people like Steve leave it as late as possible to ask for help. Steve would have done anything in his power not to have been a percieved 'burden' to the state.

The Benefit Cheat

Introduction

I opted to put ‘The Prescription’ in this Section as I felt there was a social injustice issue in it. It occurred to me instead of assisting and wanting to enable those with HD and their families/carers to get financial support, there seemed to be a suspicion that everyone out there was just in it for what they could get. I shall resist the urge to comment on the pros and cons of the current changes in the benefits system as at April 2011.

In our case, the denial aspects of HD meant we did not claim for anything more than Job Seekers Allowance (JSA), or get any real support until actual diagnosis. This was despite it being acutely obvious the illness was taking hold and radically impacting on our finances.

At the time a specialist was seen, and was blood drawn (17th March 2005), my husband was on JSA and had been so since 2003. The poor man had been laid off many jobs, no doubt due to his performance getting worse, yet they did not know there was an underlying cause. He was still convinced someone would employ him until April 2005. I had to sit down with him at the Jobcentre and, with the help of his Advisor who was by now aware of the Huntington’s explaining his struggles, tell my husband he would never work again. He was then put on Incapacity Benefit and I applied for Disability Living Allowance for him. Just over a year later I applied for Carers Allowance when I had to cease work to look after him full time.

This poem is not about benefit cheats in the sense that society tend to think of... Scroungers; spongers; fraudulent etc. Denial of HD can lead to support being withheld understandably as it has not even been claimed for. That’s not to say it isn’t much needed, it might be that it’s a case of those in real need are being cheated of benefits, by reluctance to accept it is time...


The HD now affects his brain;
His office getting worried.
Relationships begin to strain;
His exit now gets hurried.

With wife aware his time is short,
And skills get more diminished,
She hasn’t got the heart to say,
His working life is finished.

Their income now is cut in half;
They can’t afford their pride.
He could apply for further help,
If HD weren’t denied.

The benefits kick in at last,
When diagnosis made.
No mention though of all funds,
The system could have paid.

Taken from CURSE IN VERSE AND MUCH MORE WORSE
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Old 06-04-13, 08:13 AM   #186
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Default Re: Curse in Verse

Bumpety, Bumpety time


Curse in Verse - Amazon (Other bookshops are stocking)

Curse in Verse - Amazon Kindle

Also available from the HDA Book Shop
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Old 27-04-13, 08:34 AM   #187
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Default Re: Curse in Verse

Morning all.

Another bump for the book. I managed to hand over a copy yesterday to Jo Hemmings at a TweetUP in a local pub. I also gave a copy to a guy who may help set up an interview with Robert Gray on a local radio station.

Be fascinating to hear what Jo makes of HD given she is one of the Country's leading Behavioural Therapists and does the analysis for things like Celebrity Big Brother. I did a poem called Big Brother

Robert will recognise me if we get to do the interview. He's in the next Street and we say good morning when I pass his B&B ( Number 16 as seen on the Hotel Inspector lol. However, what I hope Robert will remember if we get to talk HD is how I used to sit Steve on the bench outside his hotel when we went out. It was at a perfect comfort stop break from home and Steve would get his breath/balance back, ready to carry on a bit further. Steve and I will be eternally grateful for that little bench


Quote:
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Curse in Verse - Amazon (Other bookshops are stocking)

Curse in Verse - Amazon Kindle

Also available from the HDA Book Shop
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Old 07-05-13, 09:57 AM   #188
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Default Re: Curse in Verse

Bumpety, Bumpety time


Curse in Verse - Amazon (Other bookshops are stocking)

Curse in Verse - Amazon Kindle

Also available from the HDA Book Shop
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Old 26-05-13, 08:18 AM   #189
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Default Re: Curse in Verse

Bumping up the Blog

Curse in Verse Wordpress

Haven't had any response regarding professional guidance on sorting the meds list but had an interesting reaction on Facebook, where there was a differing of opinions on what certain drugs were actually prescribed for.

It made me all the more convinced people need to have a better idea of why something is prescribed and what counts as a side-effect and therefore needs to be noted as such.

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Curse in Verse - Amazon (Other bookshops are stocking)

Curse in Verse - Amazon Kindle

Also available from the HDA Book Shop
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Old 11-06-13, 10:46 PM   #190
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Default Re: Curse in Verse

Bumpety, Bumpety time for book and also new blog entires:

Thinking about the linking


Curse in Verse - Amazon (Other bookshops are stocking)

Curse in Verse - Amazon Kindle

Also available from the HDA Book Shop
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