Monthly Archives: February 2014

A point to address with the Library Congress

The other day I saw a programme on television called ‘Bible Hunters’. Don’t worry, I’m not about to get all religious but it looked like a fascinating series and indeed it is. On the programme they mentioned a bible that was discovered and bought by donations from the British public and is kept in the British Library (BL).

When I finished watching, I looked up the BL website. I’ve never visited the BL (old or new building) despite having worked and lived in London all my life. It got me thinking I should maybe take the time to visit. It would only cost me my fares after all, given it is free entry.

It also occurred to me that I ought to check my own book was held there. By law, a copy of every UK print publication must be given to the BL by its publishers. Using the online main catalogue search facility I put in my name.

Sure enough, my book is listed and I was thrilled to see it there. That was, until I noticed the words ‘Huntington’s chorea’ for the subject matter.

Why would that upset me?

My problem is with the word chorea being used instead of disease. I even have a poem ‘The Name Game’ in my book to illustrate why I and others are concerned that the disease is still referred to as chorea. See below:

 The Name Game


 For some time now, the disease named by George Huntington has been known as ‘Huntington’s disease’ or ‘HD’. It was originally known as ‘Huntington’s Chorea’ or ‘HC’ due to the noticeable involuntary movements of the people affected. The term chorea derives from the Greek word for dance ‘choreia’.

 As more information became known about Huntington’s, and it became clear the motor/movement characteristics were just a part of the illness; and also that not all patients actually overtly displayed involuntary body movement, the term chorea was replaced by ‘disease’. Many people, including me, are unhappy with HD still being referred to by its old name. This is particularly worrying where members of the medical profession are involved.

 Many of us feel compelled to point out to professionals at every opportunity the ‘disease’ element being important in particular where cognitive; emotional; and reasoned thinking is compromised more than physical movement. To label such a complex disease as simply ‘chorea’ suggests an ignorance of its true nature.

 Sadly when my husband died, ‘huntingtons [sic] chorea’ was stated on his death certificate.


I don’t have “HC”, I have “HD”,

I snap at the doctor in front of me.

If he mentions “chorea” just once more,

I’m in danger of kicking him out of the door!


“Chorea” may be what you heard at med school,

But by using it now you just sound like a fool.

It’s been several years now, since it’s been called “disease”,

So go back to your books and research this thing please.


Yes there may be link to “chorea” or “dance”,

Where in olden days doctors just gave us one glance,

But in case you’ve not noticed it alters my mind,

And the movement’s the least of my worries you’ll find.


Please show me respect, and use the right name;

The “disease” terms’ important, it’s not a word game;

It’s used to ensure it reflects what is true,

That this thing is so complex one symptom won’t do!


Using the contact form on the website, I wrote the next day (Friday February 14th) to request the catalogue reference be changed.

As the author of Curse in Verse and Much More Worse I was disappointed to see that my book comes under the category of books on ‘Huntington’s chorea’ (HC) as opposed to ‘Huntington’s disease’.

It may seem a minor issue where HC was the old name for the disease but part of my publishing the book was to help educate the public. I even have a poem on page 43 ‘The Name Game’ where I highlight how the condition was re-named in order to get away from people thinking it was simply a movement (chorea) disorder.

I would be very grateful if you could ensure it comes under Huntington’s disease rather than Huntington’s chorea.

Happy to discuss if someone would care to provide more contact details.


I was pleasantly surprised to get a response from the Authority Control Team very quickly (morning of Monday 17th February). The promptness was welcomed although it appears the BL don’t have control over the categories for their books! That area appears to be regulated in America under the Library of Congress Subject Headings.

 Dear Trish Dainton

Thank you for your message.

Along with many other libraries throughout the world, the British Library uses the controlled vocabulary of the Library of Congress Subject Headings (LCSH). Only the Library of Congress can actually add or change such headings, although we can and do propose new headings and changes to existing headings – inevitably, over time, some headings become outdated.

I’ve now contacted the Library of Congress and requested that the preferred term be changed to “Huntington’s disease” rather than the existing “Huntington’s chorea”. I anticipate that they will probably accept the change – though it may take up to a month or two for the change to be effected. I’ll try and monitor progress.

It’s encouraging that the BL anticipate there should be no problem with the change request. We shall have to wait and see where it still comes under the chorea heading at the time of typing this blog entry.

For anyone wondering if I did get off my fat lazy butt and visit the BL…

Wednesday morning I got a call from my temping agency. Would I please do 2 hours handover that afternoon and a 9-5 cover the following day for a company near King’s Cross Station? I said no problem and got over to the Agency in Holborn to get my assignment details.

The assignment sent me to Euston Road. I was actually placed at offices above the O’Neills pub. The pub is on the opposite corner to, you guessed it, the BL! I popped over to the BL during my lunch hour. In effect, I reckon Steve managed to not only make sure I got off my fat lazy butt to check out the Library, but he paid my fares and my lunch too where I was on a working day. Spooky or what?



A few sad lines for Valentine’s

This poem was penned by me  a couple of years ago. Valentine’s Day 2012.

I felt I wanted to do something to mark a day of sadness for myself and many who have lost loved ones. The loss of a loved one through an illness such as Huntington’s brings with it anticipatory grief as well as the kind of grief people most associate with loss. In this poem I also tried to convey the aspect of anticipatory grief.



Feb 14, no saucy card,

No rose placed on the tray.

A simple mug of tepid tea,

To greet his Valentine’s Day.


She holds the mug up to his mouth,

The mouth which once shared kisses.

Romance now seems locked in the past,

Another thing he misses.


He takes a grateful gulp of tea,

The tongue and gullet swallow.

The next gulp dribbles from his lips,

Weak muscles, cheekbones hollow.


She wipes the spill, lifts mug again,

They have another try.

She’s grateful that he took a bit,

Important he’s not dry.


Feb 14, a whole year on,

The cards fall on the floor.

The letterbox clanks shut again,

She gathers cards once more.


She takes the cards into the room

But hearts and flowers won’t see.

The cards’ words don’t read Valentine,

“With deepest Sympathy”.



Counting the Cost of Caring & Sharing

The following story is taken from my book ‘Curse in Verse and Much More Worse‘.

I have extracted it in its entirety where I responded to a twitter feed under the hash-tag #CostofCaring. The tweets are as responses to @CarersUK  invitation to tell the world how much being a carer costs a person. Not just monetary value, but as a human being.

 My response was ‘Caring cost me my own sanity at times.’

That tweet response has been getting quite a few ReTweets which suggests it resonates with other carers.

It would be unfair to Steve to leave that hanging there without qualifying the statement. It would also be unfair to carers to not share how I sought help and managed to cope, for a while at least…

Here is my story….

Breaking Point

‘God grant me the serenity to accept the things I cannot change,

The courage to change the things that I can,

and the wisdom to know the difference’

(Rienhold Niebhur)


I wrote the following as part of another writing exercise I was doing but I inserted it as an appendix to my blog to illustrate something. I got a fair bit of feedback from people who had obviously been thinking of therapy for some time, but were unsure as to whether they would benefit.

It worked for me at that particular stage in my life. That doesn’t mean to say it would always work for others, and for some who could benefit I’m aware the options to take advantage of it are sadly just not there.

There came a time later on when I really needed to look into Therapy again but I didn’t have the flexibility at that time which was needed to attend the sessions (run by the mental health service ‘mind’). A catch twenty-two situation… I was feeling suicidal where I felt trapped at home being a carer, but I couldn’t do anything about it as I was trapped at home being a carer. Nonetheless, I thought I would insert this episode to highlight I am no saint and we all need help from time to time.

By way of background, we were living in Erith in Kent in one bedroom flat. I was sleeping on the floor by the bed where it was impossible to share the bed with my husband’s movements during the night yet I needed to be in the same room lest he fall out of the bed.

We had a nuisance neighbour who played the same record – YES the SAME one record – again and again at full volume for hours on end. We had gangs of youths riding up and down our cul-de-sac every weekend on noisy quad bikes. I had moved to a more local office (Bexleyheath Police Station) to make things easier at home only to be rapidly promoted to a very pressurised job as Finance and Resource Manager on the basis I would have lots of support; only to have my boss suddenly go off on sick leave for several months. To cap it all, a few weeks into the job, the London Seven July bombings occurred making my job as Finance and Resource Manager covering three Metropolitan Police Stations a complete nightmare.

My husband’s needs were becoming more and more severe yet I was spending more time apart from him at work than ever (part the job and part my wanting to get away from the struggle at home); and I was drinking far too much for my own good. The weekend I wrote about was a turning point. The straw that broke the camel’s back…

 The Therapy

 With the strain of coping with Steve; the backlash of the London bombings of 7/7 on my job; the frustration of living in Frobisher with Mr Nutter and his loud music downstairs; and Erith’s answer to mini Brand’s Hatch come Isle of Man Bike Rally on my cul-de-sac, I took it upon myself to book Steve and I for a weekend at one of our favourite hotels from years gone by. They say you should never return and how true that is.

Years ago we had booked Christmas at a hotel in Maldon in Essex. The whole experience was so peaceful and still fun as the owners went that extra mile to make all their guests have a wonderful Christmas, with just the right mix of festivities for those seeking company and space for those wanting to get away from it all. Steve and I often reminisced about our time there so I thought it would be ideal to go back and get away from all the noise and other issues.

By now I was working virtually ten hours a day seven days a week and, because of Steve, I would be getting in at seven in the morning and sometimes going back at midnight once I had been home to make sure he was settled. It was no life and I was surviving on adrenalin and alcohol.

I knew that if I didn’t get away from home I would be tempted to go into work and I owed it to Steve as well as myself to make time for us. When we arrived at Perville Station the signs were already beginning to look ominous. The cab we had pre-booked turned up late. The idiot driver nearly run over my foot when he tried to shoot off whilst I was still settling Steve in the car!

The hotel allocated us a room on the top floor which is not ideal for Steve but they didn’t have anything else. Apart from the stairs, there was another thing that filled my heart with dread the moment we stepped inside our room. The last time we had stayed we were given a lovely room in the yard of converted stables. This time we were smack on the side of the main building, just off the main road, and within about six yards of the village church. You could see the church bell tower from the window and, as if that wasn’t enough, its bell loudly chimed on the quarter-hour and fully on the hour.

We made it down for dinner and I was determined not to be annoyed, but I was already getting stressed out. After a few drinks and a lovely meal I relaxed a little but the bells ringing early on the Saturday morning made me tense again. After breakfast I dragged Steve out along the High Street to get some magazines and a few treats. I bought half of Boots in terms of scented bath oils; body rub; soaps etc.

On the way back we stopped off in a coffee shop for lunch and then I began to realise the devil himself was out to get me. Before I could get comfortable in my chair, the noise of car horns and bikes revving up sent deafening vibrations throughout the café. I should have realised there was an unusually large mass on the pavements before but I had to ask the waitress.

Sure enough, it was a festival weekend with biker parade and brass bands with carnival floats etc. I literally started shaking with rage when I heard all the noise and my already frayed nerves went into shock syndrome.

We got back to the room but could still hear the Parade. Fortunately the bathroom was able to mute the sound a bit and I was determined to have my relaxation time. I spent an hour in the bath in the dark enjoying the aromatherapy sensations. When my time was up I went into the bedroom and lay on the bed relaxed. The carnival was over and I got a whole hour sleep before it was time for Steve to get me up to get ready for dinner.

* * * * * * * * * * * * * * * * * * * * * * * * * *

When Steve woke me I felt like a new woman. Even the bells from the church seemed to be muffled and I was ready to enjoy the hotel’s excellent cuisine with a glass or three of their red wine. I hadn’t taken out my frustrations too badly on Steve yet and that, for me, was a good sign. After all, this was about him as much as me. He needed to be shown I still cared and had his welfare at heart too.

We dressed for dinner and both looked very presentable. My make-up was immaculate and I was able to put on my favourite things. We had already agreed to go into the annexed pub across the yard for a pre-dinner drink, as we loved the quaintness of it. When we walked in the rugby was on the telly and three guys were at the bar talking sport. Steve and I grabbed a table and I went to the bar to get him a pint of lager and my glass of Merlot. I think I must have had all of two sips before it happened.

As a child and teenager I used to watch Saturday night telly with my family and laugh along with the next person at the antics of the comedian Jack Douglas. He would be doing his sketch and then suddenly his arm or leg would jerk out with no warning; taking him by surprise with comedic effect shouting “phweeey” as he looked bemused at what happened.

Unbeknown to me at the time, his twitching was later compared to taking the proverbial out of Huntington’s sufferers. I have no idea whether Jack Douglas had ever seen anyone with HD though. Steve has those moments albeit without the cry. They devastate him when in public and in one such moment he managed to experience an involuntary full shock of the arm sending his whole pint over me.

It wasn’t on purpose, I know that. But at the time all I could think about was how all my effort to relax and look good had gone to waste, and how the barman would have thought he was a drunk or that we had been fighting.

* * * * * * * * * * * * * * * * * * * * * * * * * *

 One of my survival techniques is gritting my teeth. I calmly got up from my chair drenched in lager and walked over to the bar where the guys were watching me and trying not to laugh. With my hair; face; and clothing dripping lager I asked for a cloth to wipe up the mess whilst the barman said he would clear it. He was already pouring another pint for Steve obviously having already taken in Steve was not quite all there and it wasn’t his fault.

In my sheer anger and embarrassment I walked over to Steve, placed his new pint before him, and said we should drink up as I wanted to go back to our room. He must have got about four sips through before I gulped down my red wine, still standing from not wanting to sit on the wet chair. At that stage I said I was going back to the room and he should stay there. I stormed back to the room and I still don’t know what made me leave the door open but, quite frankly, I had every intention of packing my bag and leaving Steve that night.

Steve must have sensed the serious level of my state as he somehow managed to manoeuvre his way out of the pub; across the courtyard; up the stairs; and into our room. He is not totally disabled as I have said before but believe me when I say it was hard for him to do that on his own.

When he entered the room he saw me packing the case and sat on the bed pleading with me not to leave him. By now I was enraged and told him I couldn’t go on with the way things were and I wanted to kill myself. I wrote down his mother’s number for him to call and make sure she picked him up the next day, but I was seriously going to walk off that night and make my way back home alone via the off-licence and pop a few pills.

I allowed myself to meet Steve in the eye and saw his true vulnerability. I felt akin to a mother and realised I couldn’t bring myself to abandon him. As much as I was feeling sorry for myself it wasn’t fair to take it out on him.

I had to vent my frustration somehow and I raised my hand. It was either going to be slapping and beating Steve or turned on myself. I proceeded to slap my head and face like a mad woman. It scared Steve even more but when I finished I felt cleansed and calmly put on fresh clothes over my still beer drenched body and took Steve down to dinner as though nothing had happened. When I retired to bed that night, after a shower, I knew I had reached a dangerous place and needed help.

* * * * * * * * * * * * * * * * * * * * * * * * * *

When we woke the next morning nothing was said about the night before, but the feeling of self-disgust still filled me. We had breakfast and got ready for our journey home but I knew I had come very close to leaving Steve; killing myself; or killing him. With my having been taken out of the work arena at the time of trauma I couldn’t blame it all on my job. I therefore knew I would have to do something fast to stop myself from killing one of us.

The previous day I had bought some magazines that I had foolishly expected to read during a relaxing afternoon and evening. On the train home I picked up one of the mags and soon found myself reading an article on Stress. Obviously I read it expecting to think the authors wouldn’t know what stress was if they were hit in the face with it by a bat! I did, however, get drawn to the help strap line. The article impressed me with its serious and knowledgeable take on the subject and gave a number of contact points, including the website for the British Association for Counselling and Psychotherapy.

When I arrived home I looked up their website and managed to trace a therapist very near to my work in Bexleyheath. I sent off an e-mail asking to be contacted for an appointment and the guy telephoned me the next day offering me a slot that week. I could even fit it into my lunch hour thus not interfering with anything else. I probably owe the therapist my life if truth were told.

During our first session the therapist sat and listened to me explaining why I felt I needed to refer myself. He asked questions at the right moments but, most of all, he just offered me a box of tissues and let me cry and pour my heart out. After about forty minutes he reassured me I was entitled to feel sorry for myself and I had every right to seek help. My doing that confirmed I was coping more than could be expected of someone with so many demands on them and he would be there for me as a sounding board.

I had seriously considered I was going under and wondered if going to a therapist would lead me to being referred to a doctor and then some medication, which had scared the shit out of me. The last thing Steve and I needed was for me to be given tranquillizers, or worse of all taken away from him. I was so relieved the therapist was able to reassure me that I was not mad. I was also worried any forced medical intervention would need to be notified to my boss at the Police Station.

We went on to have two further sessions and by then I was handling my incident of self-loathing better. It was agreed I would contact the therapist again if I needed any more help but, in essence, I had got through the pressure cooker stage and was even learning to turn the gas down to below simmering.

I will never be able to turn the gas out completely. I wouldn’t be human if I could do that given all the stuff chucked at me to cope with. Besides… I’m one of those people who need a level of stress to feel alive. And god knows if there’s potential for stressful situations I always seem to be drawn towards them.