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Old 27-01-17, 09:53 PM   #311
Crystal
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Default Re: Curse in Verse - the poetry of HD

Another beautiful poem Trish.......such a wonderful way to mark another year on.
So sorry you have so much to endure...'health wise'......'unlucky' a bit of an understatement! Who knows though....'have passport will travel '! Watch this space /blog! Good luck with your other endeavours.....v interested to hear outcome of CAG. hope you will find some answers and this is something I am interested in too.. as so many variables within families.

Thinking of you as you remember another Angelversary.

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Old 28-01-17, 12:09 PM   #312
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Default Re: Curse in Verse - the poetry of HD

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Originally Posted by Crystal View Post
Another beautiful poem Trish.......such a wonderful way to mark another year on.
So sorry you have so much to endure...'health wise'......'unlucky' a bit of an understatement! Who knows though....'have passport will travel '! Watch this space /blog! Good luck with your other endeavours.....v interested to hear outcome of CAG. hope you will find some answers and this is something I am interested in too.. as so many variables within families.

Thinking of you as you remember another Angelversary.

Crystal
Thank you Crystal.

Had an interesting chat with Steve's mum in the week. We haven't spoken for nearly six years. No falling out, it's just the Xmas & birthday cards stopped coming my way soon after Steve died and it was as if the family had cut me and Steve out of the family album.

His mum was audibly shaking with shock when I called her. I had to explain who I was and that I was the Trish who had been her daughter in law! When she relaxed a little I asked about how the family was but was mindful not to ask outright whether Steve's brother and sister had been tested yet as I knew she would bring the shutters down then. As far as I could read between the lines they are not showing signs so that's a blessing.

That said... My reason for calling her was to ask about her nephews and get more background. One being the one who died at 40 and his brother who I was also told is HD symptomatic. This is from another cousin who is a facebook Friend and was at the funeral.

Anyhoo... Steve's mum insisted the one who died did not have HD and that his surviving elder brother is an alcoholic. Going back to the cousin on FB he confirmed HD was the cause. Sadly Steve's mum is still working in denial theory

I was just going to get records on Steve's CAG if possible but now may try getting his full medical records. I know his mum told me with glee once how she had forbade Steve's GP from talking to him about HD and never to ask him again if he had thought of testing! Not long after that Steve moved in with me and we changed his GP and therefore I was confident she would not make appointments to see the new GP lol. God knows what else I might uncover if I can get far back but interesting exercise eh?
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Old 29-01-17, 12:31 AM   #313
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Default Re: Curse in Verse - the poetry of HD

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Thank you Crystal.

Had an interesting chat with Steve's mum in the week. We haven't spoken for nearly six years. No falling out, it's just the Xmas & birthday cards stopped coming my way soon after Steve died and it was as if the family had cut me and Steve out of the family album.

His mum was audibly shaking with shock when I called her. I had to explain who I was and that I was the Trish who had been her daughter in law! When she relaxed a little I asked about how the family was but was mindful not to ask outright whether Steve's brother and sister had been tested yet as I knew she would bring the shutters down then. As far as I could read between the lines they are not showing signs so that's a blessing.

That said... My reason for calling her was to ask about her nephews and get more background. One being the one who died at 40 and his brother who I was also told is HD symptomatic. This is from another cousin who is a facebook Friend and was at the funeral.

Anyhoo... Steve's mum insisted the one who died did not have HD and that his surviving elder brother is an alcoholic. Going back to the cousin on FB he confirmed HD was the cause. Sadly Steve's mum is still working in denial theory

I was just going to get records on Steve's CAG if possible but now may try getting his full medical records. I know his mum told me with glee once how she had forbade Steve's GP from talking to him about HD and never to ask him again if he had thought of testing! Not long after that Steve moved in with me and we changed his GP and therefore I was confident she would not make appointments to see the new GP lol. God knows what else I might uncover if I can get far back but interesting exercise eh?


My first 'introduction' to HD within my family was after I obtained a death certificate for a member of hubs family! (hadn't realised how easy this was to do, for just a small fee and providing a few basic details are known about the deceased!) without this certificate confirming cause of death (stated as 'huntington chorea!!!........just a few years ago!)... I think I could well have been facing the same denial from many of hubs family - and I was definitely accused of having made a 'mistake'... until I produced the document! It was a horrible time, but I never, ever, regretted my decision to inform hubs family, even knowing the response I would get from many of them. I am sure there are some, somewhere..in the wider family circle ..who definitely chose to 'keep quiet ' and I am not sure I could ever be forgiving of them for that.
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Old 29-01-17, 11:29 AM   #314
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Default Re: Curse in Verse - the poetry of HD

Good for you Crystal. A brave but necessary thing to do I agree.

My latest blog gives the date of when a potentailly landmark ruling on 'Duty to Warn' takes place.

More details on the background as to why a daughter is taking NHS Trusts to Court for not disclosing the HD diagnosis etc was given in my previous blog . In the case of ABC Vs St Georges & Others it talks about the lack of care for the father (his being driven to kill his wife through lack of help); the risk not knowing posed to the wife and his child; and how his children could have made informed choices regarding their own children who are now at risk of inheriting. Says it all really!

Like you say, investment of a few pounds in a death cert can be an eye opener and worth looking into. I assume this is the service you refer to as it is what I use. Gov.UK Birth, Marriage & Death Certs.

As with everything in life, sources of information are only as good as the people who are putting the information on record. Some certificates will have errors and this may include missing out the HD reference be it from lack of awareness of it existing or other reasons (eg dying before diagnosis). Not having HD on a Cert therefore does not mean the person did not have the gene but once it is on the Cert it is very unlikely that it being cited is a mistake.

As for the death cert citing 'chorea'... If you have not already seen my video please do take a look at what was on Steve's Death Cert which was done in 2011. See video HERE
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Old 29-01-17, 06:55 PM   #315
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Default Re: Curse in Verse - the poetry of HD

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Good for you Crystal. A brave but necessary thing to do I agree.

My latest blog gives the date of when a potentailly landmark ruling on 'Duty to Warn' takes place.

More details on the background as to why a daughter is taking NHS Trusts to Court for not disclosing the HD diagnosis etc was given in my previous blog . In the case of ABC Vs St Georges & Others it talks about the lack of care for the father (his being driven to kill his wife through lack of help); the risk not knowing posed to the wife and his child; and how his children could have made informed choices regarding their own children who are now at risk of inheriting. Says it all really!

Like you say, investment of a few pounds in a death cert can be an eye opener and worth looking into. I assume this is the service you refer to as it is what I use. Gov.UK Birth, Marriage & Death Certs.

As with everything in life, sources of information are only as good as the people who are putting the information on record. Some certificates will have errors and this may include missing out the HD reference be it from lack of awareness of it existing or other reasons (eg dying before diagnosis). Not having HD on a Cert therefore does not mean the person did not have the gene but once it is on the Cert it is very unlikely that it being cited is a mistake.

As for the death cert citing 'chorea'... If you have not already seen my video please do take a look at what was on Steve's Death Cert which was done in 2011. See video HERE



Some very interesting info. Trish.... Sorry if this thread is 'meandering'! a bit now! I obtained copy certificate from a local registration office direct as I fortunately had an address for the relative and it was very straightforward, the website info you gave is very useful/helpful. Really interesting point of course regarding info on certificate only as good as etc.! This particular certificate did state pneumonia as primary cause.. (followed by Huntington Chorea... same scenario with ref to HD as you mentioned regarding Steve)...which was of course correct (pneumonia) .... but as we know... a consequence of HD..... My mother's certificate stated 'old age'.......as primary cause......never mind the terminal cancer which appeared further down the list!! As you say depends on who puts the info there! Didn't even think 'old age' could be written as primary cause!?

Will follow the courtcase with interest.

Thank-you
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Old 30-01-17, 10:38 AM   #316
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Default Re: Curse in Verse - the poetry of HD

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Some very interesting info. Trish.... Sorry if this thread is 'meandering'! a bit now! I obtained copy certificate from a local registration office direct as I fortunately had an address for the relative and it was very straightforward, the website info you gave is very useful/helpful. Really interesting point of course regarding info on certificate only as good as etc.! This particular certificate did state pneumonia as primary cause.. (followed by Huntington Chorea... same scenario with ref to HD as you mentioned regarding Steve)...which was of course correct (pneumonia) .... but as we know... a consequence of HD..... My mother's certificate stated 'old age'.......as primary cause......never mind the terminal cancer which appeared further down the list!! As you say depends on who puts the info there! Didn't even think 'old age' could be written as primary cause!?

Will follow the courtcase with interest.

Thank-you
Crystal
Don't apologise for 'meandering' Crystal. We are still on topic as it's good that we are highlighting concerns about HD being exposed or hidden. I too thought Dr etc could not just put 'Old age' as a cause of death but, looking through some sites, it appears as long as they supplement with other causes under the sub headings it is acceptable I did note some more recent guidance though has updated the ruling that, where before it could only be for people above age 70 that has now been changed to above age 80.

I'm going to open a new thread under the heading of Duty to Warn at some stage or resurrect an old thread if I find one to continue. I may even do a new thread on 'How did people discover HD in the family tree?'.

Sending off my aplication form and £50 cheque today to start getting access to Steve's medical data. I suspect I may need to still request data from other sources as Capita are limited to what they hold and records before 1991 are not held by the sound of it. Until I get what they can supply I won't know what is missing. Hopefully there will be clues too on whom else to approach.
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Old 31-01-17, 12:34 AM   #317
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Default Re: Curse in Verse - the poetry of HD

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Don't apologise for 'meandering' Crystal. We are still on topic as it's good that we are highlighting concerns about HD being exposed or hidden. I too thought Dr etc could not just put 'Old age' as a cause of death but, looking through some sites, it appears as long as they supplement with other causes under the sub headings it is acceptable I did note some more recent guidance though has updated the ruling that, where before it could only be for people above age 70 that has now been changed to above age 80.

I'm going to open a new thread under the heading of Duty to Warn at some stage or resurrect an old thread if I find one to continue. I may even do a new thread on 'How did people discover HD in the family tree?'.

Sending off my aplication form and £50 cheque today to start getting access to Steve's medical data. I suspect I may need to still request data from other sources as Capita are limited to what they hold and records before 1991 are not held by the sound of it. Until I get what they can supply I won't know what is missing. Hopefully there will be clues too on whom else to approach.


A new thread (or two!) seems a v good idea Trish. As with all things in life, differing opinions will arise, but I feel sure 'hidden no more' will be the mantra of most?

I hope you receive some answers with your application.

PS comforting to know 'old age' over 80!!........I think!! In our head we're all still 18!



Best wishes
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Old 05-02-17, 09:44 AM   #318
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Default Re: Curse in Verse - the poetry of HD

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A new thread (or two!) seems a v good idea Trish. As with all things in life, differing opinions will arise, but I feel sure 'hidden no more' will be the mantra of most?

I hope you receive some answers with your application.

PS comforting to know 'old age' over 80!!........I think!! In our head we're all still 18!



Best wishes
Crystal
I may be in a majority of 1 here but if I was looking to out 'old age' on a death cert I would be thinking more of the person being over 100.

Lot's of Sprite 80 and 90 year olds out there who put me to shame (I'm 55 going on 105)
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Old 20-02-17, 10:25 AM   #319
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Default Re: Curse in Verse - the poetry of HD

Time for a book plug me thinks; and a sample poem

Taken from Curse in Verse & Much More Worse

Quote:
The Teenager’s Awakening

Introduction

This poem touches on the secrecy within families. There are still many people out there unaware of the potential time bomb ticking away in their bodies. With the advent of the internet, and wider recognition of the condition, there are fewer places to hide. Good or bad thing? You decide.

A few months after writing this poem, an article appeared in the HDA Newsletter. It was written and submitted to the HDA by a young lady who wanted to share her experience of hearing about HD with others. Felicity was just eleven when she wrote the article below.

I have reproduced the article alongside this poem as I thought it was important to balance the stark reality and shock portrayed in my poem against being open with children from the outset. I am sure everyone will agree that Felicity is a remarkable young lady!

‘Telling Kids by A Kid

My name is Felicity, and I am eleven years old. In 2008, I found out that my Nan had Huntington’s disease. I had just turned ten, when my Dad told me. I have recently found out more about HD and I am very interested to find out more as I have a 50% chance of getting it when I am older.

I am so very glad that my Dad told me as I would hate to not know something about my Nan, as I am close to her. Our family has coped with it well, and so have I. There’s only one thing; my cousins do not know about my Nan, because that was my Auntie’s decision not to tell them. I respect her opinion greatly, but I prefer to know. Personally, I feel it is wrong to not know about something that has happened, as they also have 50% chance, the same as me.

My Dad has explained everything to me about HD, so I am quite aware of what happens. He has made many friends over the HD Message Board, who I have also met. Everyone is very friendly, and I have also learnt many things from them.

Some people find it hard telling their children if a member of their family has HD, or may not want to tell them at all. Personally, my opinion (as a child), is to just tell them the truth; children are smarter that you think, and can sense things quite easily. I feel the best way is, like how my Dad told me, just tell them little bits at a time, let it sink in, soon they will start to think about what you have said, they will ask questions and all you need to do is tell them the truth. Do not add any other information, as they will ask you what they want to know. Don’t be frightened of telling your kids, they have a right to know.’

The father of the young lady is DH. The same person who inspired me to write this book in the first instance. He is rightly very proud of Felicity, especially as she wrote and submitted her article to the HDA without any input from him whatsoever. He only found out about it after the event.


His future looked bright,
But that was before,
He heard conversations,
Behind the closed door.

His parents were crying,
He didn’t know why;
He heard some parts clear though,
Like “HD” and “die”.

And later that night,
With laptop in bed,
He ‘Googled’ in private,
Words ‘HD’ and ‘dead’.

Reality dawned;
Now all became clear;
His Grandma’s strange movements,
‘Hereditary...FEAR!
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Old 21-02-17, 12:26 AM   #320
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Default Re: Curse in Verse - the poetry of HD

.
So, after reading this verse of Trish’s poem:

And later that night,
With laptop in bed,
He ‘Googled’ in private,
Words ‘HD’ and ‘dead’.

I googled “HD + dead” and came up with a non-functioning hard drive. I tried “Huntington’s Disease + dead” and came up with this:

More than half of woman’s family dead from Huntington’s disease [2015]

It suggested that I replace “dead” with “death” and it then came up with these:

I will die the most horrible death [2011] Charles Sabine’s story

Former TV reporter campaigns to bring Huntington’s disease out of the shadows [2013]

Huntington’s disease: the new gene therapy that sufferers cannot afford [2016]

Causes of death in patients with Huntington's disease and in unaffected first degree relatives [1992]

Fear of insurance penalties keeps Huntington's sufferers in the shadows [2010]

Charlotte Raven: 'I see myself as a recovering narcissist' [2013]

I have Huntington's disease, but I can still live life to the full [2010]

Computational Model Explains How Huntington’s Protective Molecular Path Dead-Ends [2016] plain language version

Systemic study of a natural feedback loop in Huntington’s disease at the onset of neurodegeneration [2016] scientific language version

That’s quite a variety of HD “stories” from such a quick search. It shows how this disease is unique with individuals in that it seems to affect everyone in so many different HD+ and HD- ways.

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