THINKING ABOUT THE LINKING
In my previous post BRAINWAVES FOR THE AIRWAVESI mentioned hoping to get across salient points in the interview I was doing on Meridian Radio. There was a plethora of prepared information/gathered links in front of me and I am pleased I was able to get the key points out there, thanks to Robert’s genuine interest in the subject matter.
Sadly (or should that be thankfully?) my interview is not available on podcast as far as I know. Having spent a fair bit of time preparing notes etc I thought I might as well reproduce some of the data below which hopefully may be informative.
I was never expecting to get all of it out there, and was surprised to get as much across as I did, but here is as good a place as any to store my take on Huntington’s and being a carer etc.
WHAT IS HUNTINGTON’S DISEASE?
Huntington’s disease – or HD as it’s often referred to – is an inherited genetic neurological condition.
It’s degenerative and affects a person in areas of their control of movement. Some people know it more as Huntington’s chorea, where limbs flailing and body jerks can be the most obvious symptom. However, it also affects cognitive thinking and psychological behaviour, so it’s been renamed as Huntington’s disease to reflect the mental health issues.
It’s a very complex and devastating disease and, as yet, there is no cure and very little effective treatment.
WHO DOES HD AFFECT?
HD is an inherited disorder. Typically it affects a person between the ages of 35 – 50, that being age of onset when the symptoms start to present themselves, However, it may affect at any age. Cases of Juvenile HD and late onset can occur.
It doesn’t discriminate by sex or race and sadly every single child born to a person with the mutated gene has a 50% chance of having the disease themselves and of passing it on to their children. It doesn’t skip generations
HOW PREVALENT IS HD?
It’s termed as a rare disorder. Up until quite recently it was thought that there were around 3,000 cases in the UK. But a new study published in The British Medical Journal has flagged up that the figure is more likely to be at least double that. It’s now thought to be between 6 and 10,000 cases.
That’s not to say it’s something that is spreading, it’s more to do with better diagnosis; awareness in families; people living longer; and data capture identifying the disease.
WHY IS IT IMPORTANT TO GET THE NUMBERS RIGHT?
This awareness not only helps in the closer sense of HD families being better informed and making life choices, it also helps in the wider sense in that it allows services like the NHS to better engage in providing resources.
Going on from the prevalence of HD, which in itself has its own huge caring commitment, there is an increasing level of need for carers in society. It’s been quoted that without carers, the UK would face a care bill of £119 billion and ‘the NHS would collapse’ so it is important carers get support and recognition alongside those with the caring needs.
HOW CAN WE FIND OUT MORE ABOUT HD AWARENESS WEEK AND CARER’S WEEK?
There are a number of Events taking place all over the UK for Huntington’s disease and for Carer’s Week. Some of which are in and around the London area.
For HD, details can be found by going on the Huntington’s Disease Association website which is WWW.HDA.ORG.UK The HDA site also provides information and support on HD.
It’s worth mentioning here that the HDA primarily supports those with HD in England and Wales. The HDA do, however, form part of the UK and Ireland Huntington’s Alliance’ which brings together other HD focussed support organisations covering other parts of the UK and the Republic of Ireland. The Alliance works as a platform to gain maximum benefit from the awareness raised across the country.
The Alliance is made up of the following organisations, all of whom provide support and information to the HD Community:-
At the end of this post I have reproduced a poem from my book which I wrote about the Alliance. I called it ‘The Brothers in Arms’.
For Carer’s Week the website address is WWW.CARERSWEEK.ORG
At this stage I am unable to pinpoint events actually taking place in the Greenwich Borough itself but there are events in London such as a Photography Exhibition of Huntington’s in Highbury; and Sainsbury’s in Bromley are holding a fancy dress day where staff will be dressing up in Super Hero costumes to reflect carers as the ‘unseen heroes’ in society.
CarersUK is another useful site for carers to access information and support. Their site is WWW.CARERSUK.ORG
I have self-published a book called Curse in Verse and Much More Worse. As a carer, and certainly straight after my husband’s death and trying to cope with grief, I found writing was a great form of therapy. The book is about HD and caring in general.
I use short poems, with background prose to act as snapshots of situations. I’ve tried to look at things from all aspects; for example the carer; the sufferer; the person looking on and discriminating; the organisation trying to help. There are 70 poems alongside stories.
WHY AN E-PETITION?
Although I no longer have direct caring responsibilities, I’m still heavily involved in the HD Community through social media.
When I heard about people being confused and afraid of the changes in the benefits system I wanted to record my concerns by way of setting up a government e-petition.
Without going into too much detail, I’ve mentioned needing true awareness of conditions for fair assessment. I have also highlighted the issue with HD being legally discriminated against when it comes to insurance albeit with guidance to regulate from the Association of British Insurers. That has implications for the use of genetic testing as a whole but that’s another issue where HD is at the forefront.
Further background on why I felt compelled to set up an e-petition can be found on my curseinverse blog site entry, Recognition is the name, E-Petition is the game.
WHERE CAN PEOPLE FIND THE E-PETITION?
For anyone wanting to view and possibly sign, it can be found by logging onto the government’s e-petition website at EPETITIONS.DIRECT.GOV.UK and searching under Huntington’s disease.
Petitions which reach over 100,000 signatures will actually be considered for debate in The House of Commons, although getting over 10,000 merits a response from the petitioned Departments.
OTHER TOOLS TO HELP THOSE WITH HD AND CARERS?
Apart from the wealth of information and support via HDA and Carers UK whose details have previously been given, I found reading books and searching on the internet for disability targeted sites invaluable!
The first book I read was written for carers by the carer of someone who had HD. The Selish Pig’s Guide to Caring by Hugh Marriott is an amazingly informative book and is incredibly supportive.
I remember thinking “Thank God I am not the only one who feels this way!” In fact… there is a quote on the cover by Alison Ryan as Chief Executive of The Princess Royal Trust for Carers. It reads
‘We have needed this book for twenty years. I wish I had been able to read it when I first became a carer’
To help me understand how HD was for the sufferer at a time when I could not comprehend the changes in Steve I read Jimmy Pollard’s Hurry Up and Wait.
Jimmy’s book cleverly uses exercises which force the reader to think differently. The Stroop Test for example which appears to play tricks with your mind! It helps you realise the things we take for granted as having been learnt and ingrained in our minds over a lifetime can so easily be reversed.
Those books and many more are listed on the HDA Book Shop area of the HDA site
When it comes to trying to overcome problems, internet searching can throw up so many unexpected answers. Sometimes I wish I had searched even more. For example, as also touched on in my Blog site, after Steve’s death I came across a site called Changing Places WWW.CHANGING-PLACES.ORG
It was important to mine and Steve’s quality of life that we could get out and about but when he became dependant on me to hoist him it limited our options and we couldn’t go too far from home at times.
I wish I had come across Changing Places much earlier as they have information on venues with adult changing facilities with hoists and other equipment which can be accessed. I was surprised to find a place in Deptford and others in the Borough as no one seems to tell you about these resources.
Last but not least, speaking to other carers in person or via internet chat sites helps you feel you are not alone and I was helped tremendously by others on the HDA Message Board which is for carers and sufferers alike.
The Brothers in Arms
In this Section I thought it only right that I acknowledge the HDA and other HD Associations have also had to adapt in today’s harsh economical climate.
In 2009 the four Huntington’s disease charities throughout the UK and Southern Ireland came together to launch a unique Alliance through Huntington’s Disease Awareness Week. The aim of the collaboration was to make as many people as possible aware of this disease and its devastating effect on whole families.
The new partnership is called ‘The UK and Ireland Huntington’s Alliance’.
Whether London; Belfast; Cardiff,
Whether Glasgow; or Dublin;
The enemy we call HD,
Won’t care which place you’re in.
Across the regions far and wide,
Societies old and new,
Commit to standing side by side,
With so much more to do.
As the interest is ignited,
And Societies come to fore,
Linked together they’re united,
Against the HD War.
As brothers in arms they’re standing tall,
And fighting the War together;
The common purpose after all,
Is to stop HD forever!