Monthly Archives: June 2013
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!
I mentioned in my last blog entry One dose of Tweetment or two? how I ventured out into the big bad world recently and networked with a number of local residents at a ‘TweetUp’.
One of the people I met at the ‘TweetUp’ suggested I might be considered for a slot on the local radio station (Meridian) to speak about Huntington’s disease (HD).
The tweet exchange was copied to Robert Gray and the outcome was I somehow managed to wangle an interview on his show. The date set was Saturday 8th June to coincide with the build up to Huntington’s disease Awareness Week and Carers Week. Both campaigns being held 10th – 16th June.
It was the first time I have been interviewed on the radio (and probably last I dare say) and it was live! I was originally expecting a 10-15 minutes slot but Robert kindly offered me a lift to the Studio and back home again and asked me to stay the whole two hours. We were talking being two hours in the Studio itself and our interacting. It was really kind of him and he was, after all, taking a bit of a gamble there.
Regarding the lift…I should add at this juncture Robert lives just a few hundred yards from me at his B&B called Number 16. Another example of Steve working from above and hooking me up with a local celebrity and DJ no doubt.
Being live, I was hoping I wouldn’t get too emotional if talking about Steve and my own circumstances. It was important to get across Steve and I were not your average HD couple struggling to identify the monster taking over Steve with no support whatsoever.
I knew of HD being possible from the outset. We didn’t have kids and we had the opportunity to be selfish and live life to the max while we still could. We saved for the rainy day and still had enough left to splash in the puddles at the end of the shades of black Rainbow.
I was blessed to have such a tolerant and laid back partner and friend in Steve. He gave me the confidence to carry on by drawing on my physical or emotional strength with just one look from those sapphire blue eyes, be they in plea for help or appreciation.
It’s very easy to write those words but hard to say out loud without crying as, not a day goes by when I wish I had told Steve these things to his face before he died.
Then again… Steve wasn’t one for being soppy and would have looked at me confused and wondering what was wrong bless him. Whilst I can’t say I talked much about those elements of our relationship in the interview, I can say I am sure between myself and Robert we tried to make it clear it was hard for both people with Huntington’s and carers in general.
The two hours went by VERY quickly and we got the words ‘Huntington’s disease’ out there many times and spoke about the caring commitment for that and other diseases. I had taken along lots of notes and web links etc to try ensuring I got across the messages I wanted to in four areas:
2) Carers Week
3) My Book
4) My Petition
Robert and I had been able to have a brief meeting the day before to chat about what I hoped to get out of the interview, and also for him to have more background information. End of day… Robert would have to build the interview into the show accommodating his regular features such as The A-Z of Greenwich and taking stock of listener interaction via media such as Twitter.
The feedback we were getting seemed on the positive side which was a relief, especially when you consider the Station is based within Queen Elizabeth Hospital. We could both have been treading eggshells openly talking about Huntington’s. Let’s not forget some of those listening may have pricked up their ears when hearing details mentioned as it was the local hospital where Steve had a number of medical staff looking after his welfare and ultimately mine too. As many of us in HD Land know, HD awareness doesn’t start or stop with the medical professionals and I was certainly no shrinking violet when it came to educating the educated professionals ; – )
Was I nervous going in and doing live radio?
The answer to that question has to be “No”. That probably sounds bigheaded but let me explain…
Before I became a full time carer to Steve I was in various jobs and in training where I needed to give presentations. I had learnt there were tactics such as making colour coded notes and trying to have a defined idea of what you are trying to get across. I lost count of the times I heard the old saying “To fail to prepare is to prepare to fail”.
Aside from the practical aspects, I was already put at ease by Robert and felt I was among friends from the outset. From the very first tweet exchange it felt like Steve was with us and approved. Robert had known me and Steve by sight from living so locally and two other things told me Steve wanted me to be doing the Show and feel at ease.
Firstly, when I walked into the Studio and sat down the large clock on the wall caught my eye. Anyone who has read ‘Time to Change’ in Curse in verse and Much More Worse will know Steve’s OCD was mainly based around time.
There on the wall was the exact same clock we have in the bedroom! One of the ones I would need to strategically move from room to room and even take away on holidays with us so Steve had his clock and familiarity. I felt I was in my own home with familiar things around us. The same comfort it would bring him.
Secondly, I was always worried one of the records Robert would play might be one with a strong emotional attachment and reduce me to tears. Music has that effect on people and I am no exception.
The only record that started to invade my psyche was Tracy Chapman’s Fast Car. That was one of those records that Steve and I both loved and bought together. There were many times I wish we both could have got in a car and driven away from our problems. And yes… I am talking collectively and in isolation here where we both would have wanted to get away from each other at times.
So there I was, just beginning to think about techniques such as digging my non-existent fingernails into my palm to block the record from my mind when out of the blue Robert starts talking to me about Tracy Chapman and music in general. It helped get me back in the room so to speak. Steve intervening to help out from above I suspect. Bless him for looking after me still.
All in all the interview seemed to go well. That is apart from nearly giving poor Robert palpitations when I started whizzing through the suggestions from the letter ‘N’ in his A-Z of Greenwich slot. Thus meaning he was in danger of having thirty minutes air-time left with nothing more to talk about, I hope he and the listeners feel it wasn’t a disaster and I didn’t hijack the show too much?
After the show I got to meet Duncan Martin who is another DJ at the Station. Duncan took a photo and said he would look into getting something on the web site if possible. Duncan kindly gave a shout out to Carers and HD Awareness Week on his Sunday morning show too. If Duncan is able to post up a link or three that will be great as I was aware I and Robert were giving out a lot of information on a lot of areas in a small amount of time. If we get something following the interview it will be great to have another reference point in the public domain.
I hope to do another blog post shortly after this one with the salient points I wanted to get across including web links. This post is long enough as it is!
Having said the above, there is always room for a poem or two and snap of Steve.
I have given below the poem I read out on air with a bit of background as to why I chose it. I have also put underneath a photo of me and Steve taken in 2005 at a wedding reception.
I love that snap as I know how much effort it was for Steve to function on a day to day level as it was back then and such events were hard work for him (remember within 5 years of that photo he passed away bless him). His will-power and stamina and sense of pride and dignity were not going to be compromised by HD if he could help it! I am very proud to be photographed with him!
After the photo I have another of my poems. It’s called ‘The Magic of Music’.
This is as good a place as any to highlight again how important the work is of those on radio stations is. Thier work enriches the lives of those in general and especially those affected by illness such as Huntington’s. Music really does keep the person inside alive longer and keeps the brain going for longer. That’s not just me and wishful thinking. As my poem highlights, it is now a subject of medical research.
Poem read on the Show:
I’ve chosen The OCD Plea as OCD was one of the main traits of Steve’s Huntington’s.
The poem outlines it was hard for him to try to function at times, and it was hard for me to accommodate his illness but it was up to me as his carer to move outside my own and others’ comfort zones.
The OCD Plea
Obsessive Compulsion Disorder (OCD) is now a relatively well known illness. It can form a big part of HD. It can be infuriating when there is no rational explanation for why certain things have to be done in a certain way; or even done at all; and yet the world seems to revolve around trivial things. That said…
However hard it may seem; challenging the behaviour makes life even more frustrating for the observer and distressing for the sufferer who cannot help it when all is said and done. I admit it took a while for me to get there but, from my own personal experience, sometimes it is best not to question… just accept/indulge and go along with it.
Obsessive Compulsive Disorder;
Just another symptom we get.
The rituals we need, within our lives,
Particular needs to be met.
My partner just don’t understand it;
She thinks that I’m being a pain.
Doesn’t she care, that by placing that there,
I must start this all over again?
The socks go on after the trousers;
The shirt goes on after the shoes.
It’s not like she’ll die, if she doesn’t know why,
This particular order I use.
So why does she still go on moaning?
It’s not her who has this HD.
The rituals are my way of coping,
So why can’t she just let me be?
The Magic of Music
Professor Edmond Chiu, as Senior Lecturer – University of Melbourne, gave a presentation on HD and noted “Our experience is that the Huntington’s patient retains the ability to appreciate music right to the end. It may be that the part of the brain controlling music ability and music appreciation is not affected by Huntington’s Disease. We don’t know where that part of the brain is, but where ever it is they appreciate music. That is a very important part of their quality of life.’
This poem tries to reflect my own husband’s continued love of music which seemed to stimulate his brain and generated much dialogue between us. A certain track or video would trigger memories and/or emotions. I found it important to have music around us and listen out for familiar tracks where my husband would want to talk about the group; a concert we went to etc (Rock or eighties music in our case).
Even if Steve only got out a few words, my giving him my automatic attention and adding a little bit at strategic moments to show I was listening/sharing/appreciating his thoughts, seemed to truly awaken him. In its own right though, music by any media would bring him back to how things were before HD started fighting for his capacity to think. It was as if music, and the memories thereof, was so precious it was held somewhere deep in the brain protected from that wishing to destroy it.
He’s 10 years into symptoms;
The illness taking hold.
A couple of infections,
Have helped to make him old.
The frame once large and muscular,
Has since been taking flack.
A special chair’s been purchased,
To help support his back.
And whilst to most observers,
He’s not the man he was,
His friends all know it’s not the case,
He’s still the same because.
Because when they play music;
When hard rock fills the air;
The change in him amazing!
Their old mate’s sitting there.