DESIGNER GENES & LOST EARRINGS

Well… Where do we start? Since my last blog posted on January 27th to mark the ninth anniversary of Steve’s taking a very long sleep, the whole world has changed!

The fact that I am posting this blog up today, to mark what would have been Steve’s 59th Birthday, suggests I have so far survived the Corona (COVID19) Virus.

Links to my previous Birthday Blogs for Steve are below:

May 2011 – I MAY REGRET THIS…

May 2012 – TOASTING & BOASTING

May 2013 – ONE DOSE OF TWEETMENT OR TWO?

May 2014 – THE SHOW MUST GO ON

May 2015 – THE FAIRNESS OF AWARENESS

May 2016 – POETRY IN EMOTION

May 2017 – ON THE WINGS OF A DOVE; CARRIES FAITH, HOPE, & LOVE 

May 2018 – SUPERSONIC FLIGHTS & HUMAN RIGHTS

May 2019 – AGAIN BEING QUOTED, WITH RESONANCE NOTED

Sad though it is to say this, there have been so many aspects of COVID19 that have actually made me grateful that Steve passed when he did in 2011; and also that my brother Leslie, who I posted about in my last blog, passed earlier this year in January.

With Steve’s advancing/late stage Huntington’s disease (HD), and Leslie having advanced Chronic Obstructive Pulmonary Disease (COPD), both would have had ‘underlying health conditions’ meaning they would have been extremely vulnerable. With the best will in the world it would have been so hard trying to care for them, whilst still trying to shield them from inadvertently catching the disease.

Steve was hospitalised for one night when he contracted the Norovirus. Apart from going in for the chest x-ray I physically stayed by his side all the time. He was scared and confused. The thought of his being taken away in an ambulance and my not being able to be with/see him again breaks my heart! Then again, I very much suspect he would have been labelled Do Not Attempt Resuscitation.

Following the government guidelines I have been at home. I told my Agency a few days before the official lock-down was announced on March 23rd that I was going to need to withdraw my availability for a while anyway. Travelling on London Transport to and from tribunals, along with being turned back when arriving on account of infections on the wards, was becoming very scary.

Add to that I have limited lung capacity on account of having untreated severe scoliosis. This means my lungs (in particular my left lung) gets rather squashed in my rib cage. Many years ago the Specialist at St Thomas’s Hospital calculated if my spine were straightened it would add at least four inches to my height where my back is so twisted. It was agreed at the time that the risks of surgery would outweigh the benefits though.

So in the end I was stuck with being four foot six inches, and being lopsided with a deformed right leg and foot. My hunched up posture makes me look even smaller no doubt. With the osteoporosis kicking in later on, it made the condition worse and more painful. Bummer! Still didn’t stop me being a hands-on carer though. Amazing how I could pick up Steve from the floor at times if he fell! Where there’s a will as they say…

I have spoken to my sister and told her SHE IS NOT to come to the flat if she does not get a response from me when calling;  and she has to wait at least 24 hours before dialling emergency services. I have an ‘Advanced Decision‘ in place (which she and my doctor have a copy of) and she knows I would never forgive her if I were to wake up in a hospital bed with an even weaker respiratory system!

Being at home, alongside the real possibility of dying, has made me crack on with doing some of the things I have been wanting to sort for ages. Apart from a lot of admin, I wanted to tackle downsizing my wardrobes from three to one. I should add we are not talking my adding to the overworked bin personnel and potential fly-tipping here.

My sister came over soon after Steve died and between us we sorted a lot of Steve’s clothes for the local charity shop. Quite a few of the donated items had not even been worn so they were very grateful. That included some designer T-shirts. The designer T-shirt thing wasn’t about Steve being pretentious. It actually started when Steve worked in the offices of Selfridges in Oxford Street.

Steve worked in the Import Department as an Import Clerk. Apart from the staff discount, they would have the occasional batch of items to sell off to staff. Basically ‘seconds’ that could not go to the shop floor given everything had to be top-notch without a stitch out of place. As you can imagine that did not happen a lot and the quality was still an absolute bargain!

As time went on and HD meant Steve was losing weight, clothes wouldn’t quite hang on him properly. However, that didn’t mean we should stop indulging him by buying nice things. We continued to buy the odd designer T-shirt but only mainly at Duty Free shops and sales in shops on our travels.

I did hold back some of the items, but if I am honest I wish I had said to my sister to leave it until I felt more ready. There are so many garments I regret losing in the process. From the small section I did manage to keep, some are showing signs of the moths having got at them but I still can’t bear to part with them.

Including Steve’s items, the three wardrobes comes from my own clothing being basically split between a fold out clothes rail (what I call work wear)  and a canvas wardrobe with non-work items. After discarding things that don’t even fit anymore, what’s left could easily be condensed into sharing with Steve’s few items in the main wardrobe.

Thing is… every time I aim to let something go, memories flood back if worn/purchased in mine and Steve’s time. To make the process less stressful, what I have recently been doing is throwing out one item a week but making sure I cut out the labels and a section of the material which I can then make notes on before placing in my memory box. Yes it is like a form of hoarding. The difference is it is about having control of the process now by holding back a little bit each time. I swear I would have made a great psychopathic serial killer with a ‘trophy’ box had I put my mind to it.

Like my myriad of clothes; my jewellery has been spread around in different rooms; different boxes; different drawers. Some are earrings where I only have one left having lost the other one god knows where. One of the garments I planned to wrench away was the blouse that I wore to Steve’s funeral. Rather than just let it go, I used the material on frames to gather and  store jewellery on. Just a case of pushing the pieces through the material and securing from behind with the ‘butterfly’ or ‘back’ etc.

The photos below show how basic my handiwork was. Maybe I will take time to rearrange more artistically one day. What the photos don’t illustrate very well though is how sparkly and twinkly they are even in this basic formation. Much better than being hidden in the dark and never being allowed to shine again. Maybe it was some kind of subconscious metaphor for lock-down going on in my head?

The solitary earrings now include an earring from a pair I was wearing just before stopping work. Unusually I was asked to cover two hearings at the same time. With the need to dash around between wards and floors and rooms it wasn’t until too late that I realised one was no longer in my ear. I felt heartbroken as the pair had sentimental value. I have to count myself lucky though that I didn’t lose both.

I am grateful I still have one of the photos where I was wearing the set; and now it is central in my naive experimental handiwork. Placed central between the two sets of pearl drop earrings. The necklace in the photo with Steve is also now out of a box and sitting on the side sparkling and bringing a smile to my face again. I can’t really say any of the pieces have a real monetary value. In terms of sentiment though, they are priceless to me!

While we are on the subject of money; with the wrecking ball that is COVID19 dominating the News, the outcome of the case of ABC Vs St Georges was finally announced on  February 28th. I have blogged about the matter on several occasions but a succinct summary of the Case, and the outcome, can be read in this post from 12 King’s Bench Walk (12KBW). The full Decision of the Judge can be read HERE.

In essence, the Judge decided against the claimant’s being awarded compensation for not being informed of her father’s HD status at a crucial time. This information being key where she was pregnant and her pregnancy was known to her father’s treating team but deliberately held from her in the interests of maintaining her father’s patient confidentiality. The claimant had argued the professionals had a ‘Duty of Care’ to her too where she was involved in family therapy. The case is very complex but the Judge broke the issues down into the key areas as outlined in the 12KBW post.

To my untrained mind though, what the 12KBW post does not reflect on much, is something that struck me as potentially what undermined the claimant’s main plea. That being, having her father’s HD status at an early enough phase would have given her time and knowledge to consider terminating her pregnancy.

Fundamentally, that she could have demonstrated a strong and determined enough mindset to have acted on such knowledge to terminate the pregnancy should she have had a positive test result. The lack of a termination option being at the centre of the whole claim.

I say this because it appears when applying the options logic to her sister, the claimant too seems to have found it too difficult to divulge such critical and devastating information. In fact, with her own knowledge, she seems to have decided to make judgement’s about her own sister’s ability to take on board and rationalise such information.

I have extracted below two particular paragraphs, underlining the sections that I found troubling when hearing/reading for the first time.

In para 20 it says:

20. The claimant’s sister was then in the early stages of her first pregnancy. The claimant informed the clinical team of her sister’s pregnancy. The claimant decided that she did not want XX’s diagnosis to be disclosed to her sister during her pregnancy. XX also maintained that the sister should not be told. On 7 October 2010, a meeting of the St George’s Clinical Ethics Committee took place, chaired by Professor Eastman, to address the question of whether the diagnosis should be disclosed to the claimant’s sister. After discussion of the issues, a vote was taken. The minutes record that the majority supported XX’s right to confidentiality and would not disclose the information. The claimant’s sister did not therefore learn of XX’s diagnosis until after her baby was born. She has since been tested and has been found not to have the genetic mutation.

The assumptions issues are highlighted in paras 111 and 112:

111. On 25 August 2010, XX spoke to one of the genetic counsellors by telephone. They discussed the accidental disclosure to the claimant. The counsellor indicated that the claimant was welcome to call her, and the claimant spoke to her later the same day. The claimant was very upset. She indicated that she wanted to discuss the implications for herself and her sister before she told her sister. She said that her sister was ten-and-a-half weeks pregnant, but her father did not know of the pregnancy.

112.  The claimant was referred to the genetic clinic by the counsellor, who wrote:

“[She] would like to come and discuss with you the implications of the possible diagnosis in her father for her and her sister in case there are any prenatal testing options her sister can avail of. She wishes to discuss this with you prior to informing her sister.”The claimant spoke to the genetics counsellor again on 27 August 2010. The note of that conversation includes:

“Doesn’t feel she wants the test now and feels telling her sister now will not help her as she has always been more anxious than [the claimant].”

Whilst 12KBW highlight the outcome does not automatically slam the door shut for future cases ‘in different, perhaps more stark, circumstances’, I do feel for the claimant who needs to pay all the legal costs and cope with the ramifications on top of what was already a set of tragic circumstances on a scale of Shakespearean level! In the end, I hope her child proves to have not inherited the gene. That can only ever be the happy ending for the claimant to this I fear.

The whole episode of ABC Vs St George’s shines a light on the complications and sadness HD can bring. To be fair, a lot of other genetic diseases too. I suspect the claimant is glad the case may have not been picked up on by the wider media where they were gearing up to focus on another, more newsworthy, medical issue. That being COVID19 of course.

Indeed, my own venturing into the public gaze has been put on hold due to COVID19. The episode of Murder, Mystery and My Family featuring Harry Dainton was due to be screened on Friday May 1st. See HERE for an earlier blog entry with more detail on Harry. A potential date in June has been mooted but we shall just have to see.

I shall close with a poem for Steve and some more photos.

The photos include the one I referred to earlier regarding the solitary earring. It was taken at Park House. The T-shirt Steve is wearing looks so big on him where he has lost weight bless him. I can’t recall the label but I do know it was one of his favourites.  

The other photos were taken in 2001 when we stayed in Berlin. Steve is wearing an Yves Saint Laurent T-shirt just chilling out in the hotel foyer, no doubt waiting for me to get my act together and decide how we were going to spend the day. Just to demonstrate Steve wasn’t as pretentious as I may be making out, he was also more than happy to wear his tourist T-shirt during our trip. He was always fun to travel with!

The third snap is one Steve took of me. I know it was Berlin as the TV Tower is in the background. No designer T-shirt for me. If I am honest though, that would have had more to do with being only the size of an eleven year old and with a dodgy back meaning I have sloping shoulders. Nothing hangs on me properly, designer or not. Add to that, children size clothing has its limitations as you can imagine.

Nearly twenty years later but how I wish I still had more of Steve’s collection of designer and fun T-shirts. Then again… I Still have my own top from that photo even though it is probably too small now. I still have the watch I wore;  one earring and the necklace too. And I still have Steve in my heart. I am blessed with so many riches and should always be grateful for what I have, rather than sad for what I have lost or lose along the way.

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With weeks going by of enforced staying in,

I busy myself, and a project begin.

An early ‘spring clean’ may be something to do,

To declutter the flat and my memories too?

 

Why use three rails when I only need one?

My clothes are spread out and this needs to be done.

I open your wardrobe there’s not much inside;

I cleared out the bulk too soon after you died.

 

Take out a hanger; blue Burberry top;

HD didn’t mean that the style had to stop.

Just one of the items that brought you such pleasure;

I wish I’d kept more now to hold and to treasure.

 

Start with my items and place in black bags,

Then take them back out and put scissors to tags.

I’ll just keep a small bit to use up less space;

Too hard to let go and I’ll never replace.

 

Look at the jewellery; feeling the same;

I pick up a gun and an old picture frame.

The gun fully loaded with staples engaged;

The cloth is pulled taut and the earrings all staged

 

Checking whole Items and pieces of cloth;

Designer or not, no respect from the moth.

A patchwork of memories make up this strange quilt;

Stitched with the threads spun from love; and from guilt.

 

Happy Birthday Sweetheart!

Trish xxxxx

Pull Emergency Cord, and Scramble Aboard.

Nine years ago today, Steve was given his Angel Wings. On his Angelversary I have come in to commemorate Steve and post up a new poem for him. My previous Angelversary Blog can be read HERE, where you will find links to earlier blogs written on Angelversaries. It’s difficult to get my head around how nine years have come and gone.

Since my last blog there has been a lot happening in respect of Harry and Hannah’s story.  More details on their story can be seen in my previous Angelversary Blog and also HERE.

For various reasons I am not allowed to give out too many details on social media at this stage but I can say we did make it to be included in the BBC Programme – Murder, Mystery & My Family. The episode featuring Harry Dainton is yet to be screened but I hope to be able to divulge more in my next blog.

Viewers of the programme will know the ‘relative’ often gets to see the scene of the crime and where the person who was hung is buried, or said to be buried. As part of the filming I visited Bath and Shepton Mallet. The latter is something I have been wanting to do for a long time. The former is something I have actually been dreading in some ways.

Back in 2002 Steve and I had a lovely long weekend in Bath. We stayed at The Abbey Hotel in the Royal Crescent. It wasn’t the hotel it is today, with a very posh Marco Pierre White restaurant, although it was still a posh hotel in 2002. We booked it where it was within the Best Western Hotels chain.  We had a wonderful time and I knew it would be hard going back to Bath without Steve. I was certainly not going to stay overnight, or the two nights that the Production Company originally asked of me.

I mentioned the hotel chain as we would tend to book trips using the same hotel chain if we had stayed at a place and liked the accommodation and service. Before the days of the internet, it was very much a case of picking up the brochures in the lobby and browsing through their catalogue of packages and offers. A few months earlier we had been to one of their hotels in Edinburgh.

There were so many other trips to fabulous places in the UK we visited having picked up a brochure on a previous trip and just going for it. We were not spontaneous people in the sense of just packing a back-pack and heading off, I liked my comfort too much. However, we did love to book our next trip virtually on the back of the last one and always have an adventure to look forward to.

The thing we loved about that particular Chain at the time was that all the hotels would be different and very quirky, insofar as they would retain a lot of their heritage. They certainly were not like the charmless Holiday Inn type hotels. Later on, when Huntington’s disease (HD) manifested itself, the freedom to just go anywhere became less of an option. I’m so grateful though that we got to see so many places together. I’ve no inclination now to go back to those places alone.

Our last Best Western hotels adventure was when we took a trip to Jersey for our 17th wedding anniversary in 2005. We had been to Jersey several times before but this time was different. In the past we had been there in the spring/summer to coincide with birthdays. We were now talking November but I figured it would be an opportunity to go somewhere by plane for a short flight, and we already knew the Island making it easier to navigate.

We stayed at The Royal Hotel . Looking at the website for the purposes of this blog I was amused to see in 2020 their Bar photo shows they still have the quirky check/tartan carpet that Steve and I felt compelled to take photos of.

 

 

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I do have bittersweet memories of that trip though when looking at the snaps. As lovely as it is to see Steve’s smile when he posed for me on the first day in the room, the two red chairs and table bring back sad memories. I recall on the last night of the trip, using a pillow for comfort on the table and pulling the chairs together, I slept on them with coats to cover me.

It wasn’t a case of us having argued. The reason I took to the chairs was I needed to get out of bed in order to get some sleep away from Steve’s flailing limbs. By November 2005 we had moved to a flat with two bedrooms. Before that, I had needed to take to sleeping on the floor in our one bedroom flat when Steve’s involuntary body movements had meant it was unsafe to share the bed.

I stress that Steve could not help it. In fact, he was only afflicted by the movements when asleep and unaware he was doing it. I cover Steve’s affliction in poem form in my book – Curse in Verse and Much More Worse. Below is a poem from my book which highlights what I understood to be Myoclonus. Steve did not experience all of the symptoms I describe but it is fair to say an array of them appeared along the way.

The Terminology

 Introduction

This poem is about the use of medical terms when referring to symptoms of the disease.

Shortly after my husband was diagnosed, we were sent a copy of a letter to his doctor which was written by his Neurologist. It contained the word ‘anhedonia’. I had to look the word up and it made sad reading as it brought it home to me that, whilst my husband was still showing signs of recognising ‘pleasure’, it could be that he would lose even that most basic form of human awareness.

Because of the complexity of the disease, the chances are that many will come across words used in the description of symptoms that are not easily recognised. The majority of the terms given below were used in connection with my husband. I personally found it useful to look into the meanings of the words to try helping me get a handle on where those making assumptions about my husband were coming from.

“It’s all Greek to me!” Is the phrase in my head,

As the words on the paper begin to be read.

Is it Greek, is it Latin? I haven’t a clue,

But it sounds quite impressive how they describe you.

 

So I turn on computer and search on a word;

Oh why is the spelling of these so absurd?

And then one by one, as their meanings unfold,

It’s no wonder they use them, the sadness they hold.

 

‘Aspiration’, tells me though happy you’re fed,

The nutrition is aiming for your lungs instead.

‘Dysphagia’, tells me the food that I give,

Is making you choke more than helping you live.

 

‘Dysarthria’, tells me your mouth will not say,

What you want me to do; do you want it this way?

‘Bruxism’, tells me your teeth will grind more,

And whilst you do not notice, my nerves can’t ignore.

 

‘Ataxia’, tells me your order is altered,

Explaining the speech and the steps, which are faltered.

‘Dystonia’, tells me I straighten in vain,

The stiff limbs contorting, contracting again.

 

‘Alexithymia’, tells me your feelings are dead,

Or you cannot express them as words can’t be said.

‘Anhedonia’, tells me you cannot feel pleasure,

Devoid of the feelings you once used to treasure.

 

‘Myoclonus’, tells me the thrashing in bed,

And the knee in my back, and the punch in the head;

It’s not that you mean it; it’s not aimed at me,

There’s a name for this symptom within your HD.

I can think back to a lovely 2002 Bath trip and have no recollection at all of any signs of HD. Just exploring the Town and doing the tourist stuff interspersed with lovely pub lunches and hotel dinners spending real quality time together. In saying that, HD was manifesting itself in Steve but more within the realms of his behaviour than overtly physical symptoms.

In 2002 when visiting Bath, I suppose I could compare Steve with being a bit like the Best Western hotels. His quirkiness being more a fundamental part of his charm and  I guess I loved him even more for it at the time. Only nine years on and I had become a widow.  I have to admit over time the quirkiness became less attractive. Looking back, it’s fair to say Bath was one of the last HD free holidays I can remember.

The latest Bath trip was cold and miserable in many ways, not just the weather. I’m so glad I went there with Steve in happier times as it is normally a beautiful place to visit. How do I feel about the 2019 visit for a kind of ghost hunt with a purpose? Let’s just see how the story of Harry and Hannah unfolds on screen.

Before I end this blog with a new poem for Steve, I am also sadly marking the death of another loved one. Leslie, my brother, died very recently. Sadly he was found dead in his flat.

I had spoken to Les very briefly on the Sunday evening. On Monday night I was worried he was not answering his telephone for another one of our catch-up calls. Being worried,  I rang the office first thing Tuesday morning to ask how he had been when they would have seen him the day before?  The staff do their weekly check on residents on Monday mornings and have my number in case of emergencies.

Apparently they did go to his flat and knock on his door on the Monday. When he didn’t answer they simply assumed he was out and put a card through his letterbox asking for him to call them by Wednesday to let them know he was okay!

Until I get the Coroner’s findings I wont know time of death.  He could have been dead behind the front door (where I believe he was found) at the time they knocked. It was on the Tuesday morning, after my asking them to check where I could sense something was not right, that he was found.

I should stress the police have ruled out suspicious circumstances. Also, residents have alarm cords to summon the wardens if needing help. I can only assume Les didn’t make it to a cord. To be fair, even if Les had been given an alarm pendant he probably would not have worn it as he was in denial about his physical and mental health needs.

It could be argued he should have been in a care home, or at least been under a higher level of care. Les was obstinate about not wanting to go into a nursing home and was annoyed at even the mention of getting assessments of his health and welfare arranged. I have been told an appointment had been madw for him to go to the doctor’s surgery a few days earlier but, being four o’clock in the afternoon (too late to go out in his mind) he refused to go and said he would make his own appointment the next morning. He never did.

I have lots of fond memories of me and Steve going out with Les and Kerrie, his ex-wife. Kerrie worked in an office just like me and Steve. Les was in the building trade which was like a different planet. The three of us would gang up on Les if he tried to argue office workers had a much easier life. Les wouldn’t have lasted five minutes in the brutal world of office politics!

Les is in the background of this wedding day snap where we are attempting to cut the cake to serve before dashing off to our honeymoon. If there is a pub in Heaven, I dare say Les would have been expecting Steve to line one up for him within minutes of arriving.

 RIP STEVE DAINTON  1961 – 2011   &   LESLIE WALKER  1953 – 2020

Cake cut

Two thousand and two and we’re visiting Bath;

Indulging ourselves with a break.

Wining and dining and having a laugh;

Just one of the trips we would take.

 

Two thousand and five in another hotel;

Visiting Jersey instead.

Only three years but the symptoms can tell,

And I’m using the chairs as a bed.

 

Two thousand eleven you’re travelling again;

This time I’m stuck here at home.

Trip was to Heaven and I missed the train;

Left on the platform alone.

 

Two thousand nineteen and I’m still at the station;

Timetable still in my hand.

Trains that arrive show the wrong destination,

With names that I can’t understand.

 

Two thousand twenty and trains are arriving,

But others are taking my seat.

I’ll stand on the platform marked for ‘Those Surviving’,

Until I can board one to meet.

 

Happy Angelversary Sweetheart!

Love

Trish xxxxx

 

Human Tragic & Animal Magic

Tomorrow ( 25th November 2019), would have been mine and Steve’s 31st Wedding Anniversary. My 30th Wedding Anniversary blog can be seen HERE where links to previous Anniversary blogs can also be found.

Apart from commemorating Steve and providing an up-date of what has been happening since my last blog, on this occasion I am sure that Steve would approve of sharing the focus. Taking this opportunity to commemorate another very special human being – Mark Harrison. Mark collected his Angel Wings on September 7th and by his side was his sister – Jacqueline (Jackie) Harrison.

Readers of this blog will know Mark and Jackie, and their border terriers Sybil and Spike, have been interwoven throughout my blogs. Jackie and Mark’s story of being a family affected by Huntington’s disease (HD) has been humbling and inspiring to all of us in the HD Community and way beyond. Indeed, they have touched the hearts and minds of many who had previously not heard of the disease or known much about it. From Joe Public; to sports personalities; to celebrities; and even members of the Royal Family!

One such person who has been touched by the Harrison family story is the writer – Alice Peterson. Alice recently released a new book called If You Were Here. The book is set within the theme of HD and fundamentally focuses on the dilemmas of testing. I pre-ordered a copy of the paperback and I was not disappointed. The link HERE takes you to  my Amazon review.

In the above linked review, I made a reference to the Case of ABC v St George’s Healthcare & Others which I have previously blogged about.  As I am typing this particular section, the Case is being heard before Mrs Justice Yip in Court 15 of the Royal Courts of Justice. The Case opened on the 18th is expected to last two weeks, with closing submissions to be heard in January 2020. A link to the initial BBC coverage can be seen HERE.

On the subject of books and writing; I can’t say I have accidentally come across references to myself and Steve again in other peoples’ work as covered in my last blog. However,  I was approached in July via social media by a production company working with Channel 5. They had seen the BBC article and wanted me to share our experience of being Concorde passengers in a television documentary.

The documentary was sold to me as being made for screening next year to coincide with the 20th Anniversary of the fateful Paris crash of Flight 4590 which will be in July 2020. There were parallels between our story and that of many passengers who died. Like us, they had been part of a package tour combined with a cruise.

I gave an interview to camera and the team then shot scenes of me looking at photos of myself and Steve at a kitchen table and reflecting on happier times. Understandably no guarantee of inclusion could be made but I was told they would get back to me with a screening time and programme title once known.

Sadly my piece to camera didn’t make it into the final cut. In fact, it looks like in the process of making the documentary its raison d’être shifted somewhat.

I’m also sorry to say that the final cut of the film didn’t include your interview. This was simply because of time limitations, 45’ isn’t long to tell a complicated story.  It was in no way a reflection on the quality of your interview and story and I’m just sorry that we didn’t have longer to do it justice.

The timing of screening was a real surprise given it was to be only a few weeks after I had given my interview. Not July 2020 as originally planned. The final title was given as ‘Inside The Cockpit: The Concorde Crash’. On watching the documentary I can see they packed in a lot and my piece would not really have fitted in. Perhaps they were hedging their bets in case other parties dropped out?

The Production Company/Channel 5 own the interview I gave and reserve the right to use its content in other programmes. You never know… Mine and Steve’s piece may still find its way into a separate programme. Here’s hoping we are not talking ‘It’ll Be Alright on the Night’!

Still on the subject of documentaries; if you are wondering what is happening about Harry and Hannah Dainton’s story and my quest to try getting it on ‘Murder, Mystery and My Family’ (see HERE for further blogged background) all I can say is Watch This Space! 

Bringing us back to Mark; there is a fantastic member of the HD Community – Allan Adams – who has been creating YouTube videos for the ‘Give a Toss for Huntington’s Disease’ and ‘Sybil On Tour’ campaigns. His latest video is an updated version of an earlier one featuring the Harrisons to reflect Mark’s passing. It can be seen HERE

In Allan’s video he uses the statement ‘He will not lose the capacity to love’. That is very clear from the photos, many of which show Mark’s affinity with animals. Not least, this one taken by Jackie.Mark 1

 

Mark Harrison
‪16 April 1972 -07 Sept 2019

Not losing the capacity to love is something I recognised in Steve. He loved animals and they loved him. Indeed, anyone who knows our story or has read MY BOOK will know I went to extraordinary lengths to make sure Steve could always have a ‘cat’ in our flat to channel his sweetest of love and affection towards. Ruby and Ruby-Tuesday are still with me and also doing their bits for HD Awareness. Here’s their ‘Give a Toss for Huntington’s Disease’ video.

You can see the clear joy in Steve in this snap where his sister’s dog – Meena – has decided his lap is the most comfortable place to settle.

10

Another example demonstrating a connection is this set of photos taken in 2007 at the Grand Hotel in Llandudno.

  • Steve is enjoying the sun on the balcony (snap 1). I go inside to get a drink and poke my head out when I hear him talking to someone.
  • It wasn’t a person on another balcony, it was his new best friend and confident (Sid the Seagull – snap 2).
  • Something has clearly caught their attention happening below them (snap 3).
  • When I came back I rewarded Sid for keeping an eye on Steve and his therapy session with a biscuit (snap 4).

 

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Yep, there are signs telling guests ‘DO NOT FEED THE SEAGULLS’ but Sid had earned his meal. He hadn’t simply taken a biscuit off the plate on the table and flown off. Sid had given Steve his company and both of us a smile. Okay, I confess I didn’t check if Sid was male or female, and I know technically Sid was a bird as opposed to an animal but you are going to have to indulge me on that one.

I am going to end on a new poem for Steve and also a link to a rather long slide show (just over 8 minutes) which I created for our twenty-sixth Anniversary. I can’t believe five years have passed since it was made. Time seems to have stood still in so many ways.

 

Another Angel joins you walking through the Pearly Gate;

No doubt a walk of confidence, with posture tall and straight.

The Huntington’s now left below, relieved of stress and pain;

In Heaven it’s a better place and all are whole again.

 

But the distance between here and there is not so far away,

And I know that you pop back and forth to help me every day.

Within this flat it feels as though you’re sitting here with me;

Still communicating as we read, and watch TV.

 

Reading stories of HD in forms of fact and fiction;

Reminders of the secrecy, and tales of family friction.

I’m grateful you were thoughtful and you didn’t hesitate,

To tell me of the HD risk and what could be your fate.

 

The choice to not have children was therefore ours to make;

I don’t regret the personal choice and steps I had to take.

Perhaps the lack of children and lost channel for affection,

Was somehow felt by animals to make a real connection?

 

Now thirty-one years and counting… 26 Anniversary Video

Happy Anniversary Sweetheart!

xxxxx

PS Make sure Mark gets a glass of bubbly; Sybil and Meena get some treats and ‘Sid’ or Siderina gets a biscuit!

 

AGAIN BEING QUOTED, WITH RESONANCE NOTED.

Today we celebrate Steve’s 58th birthday. I’m here, and Steve is still here too in his own way.

The conventional celebrations are somewhat hampered on account of Steve not being here in the flesh and blood form of carbon. He is physically now a more static form of carbon (ashes) but certainly here in spirit as far as I am concerned. Not an alcoholic spirit I hasten to add, but a very kind and awesome spirit. In the same manner as he was a very kind and awesome living and breathing human being.

As ever, I wanted to come in and celebrate Steve by marking the occasion with a birthday blog. Previous birthday blogs can be read here:

May 2011 – I MAY REGRET THIS…

May 2012 – TOASTING & BOASTING

May 2013 – ONE DOSE OF TWEETMENT OR TWO?

May 2014 – THE SHOW MUST GO ON

May 2015 – THE FAIRNESS OF AWARENESS

May 2016 – POETRY IN EMOTION

May 2017 – ON THE WINGS OF A DOVE; CARRIES FAITH, HOPE, & LOVE 

May 2018 – SUPERSONIC FLIGHTS & HUMAN RIGHTS

My last birthday blog (see above link for May 2018 – SUPERSONIC FLIGHTS & HUMAN RIGHTS) talks about an amazing find where I chanced upon seeing a BBC on-line article which featured me and Steve. They quoted from a piece I had submitted to a Concorde Membership website. I had not been aware they were using my story so it was sheer luck that I saw it that day.

A few months ago I was doing an internet search on something else and, once again, I happened upon a link to a website which threw up something wonderful. It was a link to pages in a new book about Concorde.

Much like the BBC article, to my utter surprise I found myself reading mine and Steve’s names on the screen in front of me. Regular readers of my blog will, by now, know I like to think it was not just a case of being luck or a fluke. Instead, it being more a case of Steve communicating/intervening.

The book in question is called ‘LAST DAYS OF THE CONCORDE The Crash of Flight 4590 and the End of Supersonic Passenger Travel’. Its author – Samme Chittum – works at Smithsonian Books. In her book, Samme has cited the BBC article and pulled out my particular entry for her chapter – ‘Final Farewells’. See the slideshow below for the entry, alongside mine and Steve’s names being given in the Index and source material.

 

 

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I felt honoured but also, If am am honest, there was a little bit of me that got a bit annoyed. Once again I had to come across my own words by accident. For courtesy sake, if nothing else, the BBC and Samme should have made efforts to ask permission first. That said, once something is out there on the World-Wide-Web it takes on a life of its own.

To be fair, I am happy for people to use my words and our story as long as they use them in such a way as to raise awareness of Huntington’s disease (HD). Both the BBC and Samme left in the Huntington’s reference. I am very pleased they picked up upon the poignancy and retained integrity to that end.

Flight 4590 was the flight which crashed on its take off from Paris in July 2000. It was not the last flight ever made by Concorde but in a market where luxury travel was already struggling to be profitable, questions over its safety now led to its rapid demise. A very deep and personal tragedy for those on board and their loved ones; a tragedy for the industry; and also a tragedy for the people of Paris. Devastated no doubt that such an accident happened, and that such an iconic symbol of aviation was effectively lost on their watch.

Like many people, Steve and I saw the 2000 news footage on television that day. First of all our hearts broke for the people who lost their lives. It was obvious no one could have survived and lives could also have been lost in the hotel she crashed into. Sadly it was confirmed that the crash resulted in the loss of 113 lives. As this news article writes, some who died were, like us when we flew, flying to celebrate a special event having saved for many years.

There was a secondary emotion on that day too. Our hearts sunk for the loss of such plane knowing it could surely mark the end of Concorde’s reputation. She was beautiful and elegant. She was special. We could never have imagined that our own names and story would be linked to that very event in a book some eighteen years later.

Thousands of people have travelled on Concorde. There have no doubt been many people writing about experiences of flying on her or even just seeing her fly by. It is emotionally humbling to think we have been selected to represent a couple’s own human story in the history of Concorde.

Forward fast to April 15th 2019 and that sinking feeling was experienced again when watching one of the most symbolic icons of Paris go up in flames. The Notre-Dame Cathedral.

Notre-Dame will be rebuilt with time. Whether it will be reincarnated as a modern phoenix or sympathetically restored to reflect its past more than its future, the Notre-Dame, as it stood on the banks of the River Seine in 1988, will always have a place deep in my heart. Beautiful; strong; and comforting even to those like me who are not religiously inclined.

I posted in my blog WARNING SIGNS & TUBE-TRAIN LINES how we officially got engaged in Paris during a romantic trip booked especially for the occasion. I have very few photos left of that trip, and sadly none with Steve in. However, I do have a photo taken in fun. I am leaning on a rather glorious lamppost in the gardens of Hotel de Ville. In the background you can just about make out the famous spire that came unceremoniously crashing down in the blaze. Paris will always have a place in mine and Steve’s heart alongside Concorde.

Trish and Lampost in Paris

We visited Paris only once again after the engagement trip. There were so many other places to visit. As time went by though, and Steve was getting less able to travel, we would sometimes take the Eurostar to places like Brussels and Lille. It was relatively easy to get from home to Waterloo Station where the train originally left from.

By staying in hotels very near the destination stations we could stay for just a couple of nights with minimum fuss and luggage and still feel ‘normal’. Paris was also easy by train but the relaxed pace of Lille, in particular, suited us.

Our last such trip was in July 2005. We had booked for a couple of nights to stay in Hotel Ibis in Lille Town Centre. The relatively easy travelling was somewhat marred where our departure journey was July 8th 2005.

As you can imagine, being within 24 hours of the London bombings there were many issues of security on a practical level, and fear on a psychological level, to deal with. We opted to put our fears aside and do the British thing of not letting the terrorists defeat us.

I am so very, VERY glad we still took the trip. We had a lovely time and I still have a few photos, some of which are below. One is Steve standing in the Town Centre which was taken by me. Another is one Steve took of me. I took the last photo nearby where we were staying. Probably on our way back to the hotel after a lovely day but Steve is now beginning look tired bless him.

Unlike the earlier photo, Steve is leaning to one side with his gait recognisable. He is obviously telling me something. Most likely telling me to hurry up so that we can get back to the hotel for a cuppa.

He had a point. whereas Steve was more a natural photographer, it had probably taken me ages to get the name of the shop and street in the frame.  All in all though we were not letting Huntington’s beat us. Still enjoying life to the full. As you can imagine,  I miss travelling with Steve terribly!

 

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Today we will be watching Queen DVDs and eating Belgian Chocolates. I no longer travel as it is not the same without Steve. I managed to find Canary Wharf have a branch of Godiva so have bought a large ballotin replicating the kind on indulgences we would have treated ourselves to when travelling to France and Belgium. I will help Steve with his share of course 😉

I will close the post with a new poem for Steve, but first an up-date on Harry Dainton (my post GIRL WITH A PEARL HEARING refers). There has been one development (excuse the pun). I had a tip off that a few days ago a Public Notice went up where the Plans have been re-submitted. I hope to add my two-penneth worth to try getting some consideration given to the fate of Harry and the others but we shall see.

As for ABC vs St Georges’ (initially highlighted in my post WARNING SIGNS & TUBE-TRAIN LINES), as far as I know the Case is still expected to go to trial in 2019. However, there has been no news of progress, be it a trial date or an out of court settlement.

It is a tad frustrating that in my job I do occasionally work at the hospital at the centre of the Case. I even deal with the Consultant at the centre of it (the one who accidentally gave the Huntington’s diagnosis away). However, it would be unprofessional to make direct enquiries with the parties themselves so I have to keep schtum. Somehow I don’t think the Trust or Consultant are likely to be subscribers to this blog. Then again, who knows where my writings will end up being reproduced next eh?

For Steve

Another occasion when took by surprise,

As our names appear sharply in front of my eyes.

Sure enough Sweetheart, as I read on,

Our names again linked with such an icon.

 

Clearly our story has resonance where,

Others who read it feel they want to share.

It’s wonderful knowing that after we’re dead,

It’s not only here that our story is read.

 

In here I share memories; photos shared too,

As I focus on good times that I spent with you.

From the fountains in Paris, near Hotel de Ville;

To a peaceful Town Square in the Centre of Lille.

 

I do see the tiredness that HD could bring;

I see more than that though, you were not giving in!

It may not be Belgium were we spend today,

But we’ll still celebrate in our own special way.

 

Happy Birthday Sweetheart!

XXX

 

 

 

 

 

REFLECTING & DETECTING.

Today marks eight years since Steve was given his Angel Wings. On his Angelversary I have come in to give a brief update on things, and post up a new poem for Steve.

Previous Angelversary posts can be seen here:

January 2012 – Moving Pictures

January 2013 – Ring a Ring o’ Roses

January 2014 – Inspiration not Frustration

January 2015 – Reaching for the Teaching

January 2016 – Coincidence or Sixth Sense?

January 2017– Procrastinating over the Celebrating.

In my previous blog I wrote about my quest to try getting more information on the case of Harry and Hannah Dainton.  As yet, nothing further has been found in respect of possibly being able to challenge the legality of Harry’s death sentence. It was always a long shot given the age of the case but still worth trying I feel.

There has been some news though regarding the Shepton Mallet Prison redevelopment and the position on the burials. Whilst it does not confirm Harry’s presence still being exactly where he was buried, a statement from the Archaeologists does provide a reassurance of sorts. It says:

The burials are in an area of tarmacked ground. The burials themselves were not exposed by our previous archaeological evaluation. The trench was excavated deep enough only to confirm the presence of grave cuts in this area; it was not excavated deep enough to expose bones/coffins. At the close of the evaluation, the trench was backfilled with the material which had been displaced from the trench, and it was re-tarmacked. The burials have not been disturbed since the evaluation, and remain sealed underneath a layer of modern made ground and modern tarmac.

There is as yet no programme for starting further groundworks at Shepton Mallet prison. The burials will remain in situ unless they are to be disturbed as part of the development, in which case a methodology has already been agreed with ourselves (Cotswold Archaeology), City & Country, Mendip District Council and the South West Heritage Trust for the removal of the burials under archaeological conditions. This process would end with the reburial of the remains at a suitable site – possibly the cemetery at Waterloo Road, Shepton Mallet, although this is TBC.

This indicates the prisoners have not been disturbed by the recent work on site; and that they will be left alone for a while at least. What it cannot answer, however, is whether all the bodies remain there. The fact that something must have happened in a previous redevelopment needing for their area of ground to be tarmacked over in the first place could signify an earlier developer might not have acted so responsibly.

I haven’t sorted out a date, but at some stage I feel I ought to make a visit to Shepton Mallet Prison before the redevelopment. I would like to think the relevant parties would invite me and others to any reburial but we shall have to wait and see.

Whatever the case, I need to revisit the site plans and try getting my head around where exactly the tarmacked ground over Harry is likely to be. I want to be someone going to say a few words to/over Harry, rather than just a tourist with morbid curiosity.

Regarding the case of ABC vs St George’s Healthcare, I noticed a few blogs have been mentioning they expect it to go to court in 2019.  One such blog can be seen HERE.

If, as expected, the case goes to trial in 2019, the court will have to decide whether Jane was owed a “duty of care” by her father’s doctors even though she had never been their patient or at any of the facilities at which her father was treated. More broadly, the court will ask if the genetically inheritable characteristic of a condition like Huntington’s disease means that a parent’s confidential diagnosis belongs to their children as well. With further advances in genetic testing, claims to a relative’s genetic information may become increasingly difficult to deny. As one scholar has put it, it will be more common for the relative of a patient to demand access to the patient’s record by declaring – with more than a hint of truth – “I have a claim, because it is about me.”

Truly one to watch as it could have such game-changing ramifications. That said, the slow way in which the world turns when it comes to enforcing changes in policy, and thereafter transferring that into practice, makes me wonder if a cure for Huntington’s would come into place quicker?

On another matter linked to policy and changes; I have previously blogged about insurance under  Supersonic Flights & Human Rights . There has been a bit of a development. Sadly though, it is not what I would call real progress. If anything, I take it more as a step back rather than forward.

There was real hope that the UK Huntington’s disease and other genetic conditions organisations would be able to work with the insurance sector, supported by the government, to think again about the way they discriminate against people.

In October 2018 the Huntington’s Disease Association (HDA) announced on their website ‘New code on genetic testing and insurance launches‘. When looking at the Code and at the Guide for Consumers I was dismayed to see it was simply more of the same.

Firstly; it is still a voluntary thing, therefore not all companies have to abide by the Code. Secondly; even if companies do sign up to the Code they are still legally allowed to discriminate against those with Huntington’s.

I quote:

If you are applying for insurance from a company who has signed up to the Code, they agree to act according to its rules. This means that the company has committed to the following:
• To never require or pressure you to have a predictive or diagnostic genetic test, under any circumstances
• To not ask for, or take into account the result of a predictive genetic test if you are
applying for insurance with the only exception being if you are applying for life
insurance over £500,000 and you have had a predictive genetic test for Huntington’s
Disease. Only in this circumstance do you need to tell the insurance company the
result of the test, if they ask

Source: Code on Genetic Testing and Insurance Consumer Guide Published October 2018 

and

Appendix I
Accepted Conditions
Below is a list of the only condition(s) for which insurers may request disclosure of
predictive genetic test results in accordance with the financial limits set out in
Commitment 2:
• Huntington’s disease, for life insurance coverage totalling above £500,000 per
individual

Source: Code on Genetic Testing and Insurance A voluntary code of practice agreed between HM Government and the Association of British Insurers on the role of genetic testing in insurance October 2018

Re’ the above quoted extract, please note if you have not opened up the link to see the full document I have not cut the Appendix 1 quote short. It really does just list one condition in it. If that isn’t discrimination in all it’s true blatancy then I don’t know what is!

Incensed by seeing what I would call a lost opportunity I asked the HDA why there had been nothing really done. They gave me what I would call the rather beige reply of:

The HDA and SHA have written a joint letter to the Equalities Commission to urge them to pick up Huntington’s disease being the only condition listed. We have obtained a place on the DWP ‘Disability Champion Access to Insurance’ working group to continue to raise this and are attending the next ABI genetics working group. So this is work in progress and we have a listening ear at last.

I say beige reply as I couldn’t understand why they were not doing more to ask the HD Community to add weight to the cause? I could be wrong of course. I would love to find no end of HDA Members have been approached directly, or asked for input via newsletters; Branch discussions and social media pushes etc. Do feel free to correct me but sadly I suspect there has been no real engagement.

Thankfully, the Scottish Huntington’s Association (SHA) appear to bee more engaged with the needs of their Members. When getting their SHAre Newsletter I read they were highlighting a Petition had been set up by their Chief Executive – John Eden. The Petition can be signed HERE. I have to confess I am disappointed the number of signatures is tiny as at time of my post ( under 220) but maybe a push by people who care about discrimination in general will help.

As the SHA say in their Newsletter

What is really needed now is for families affected by HD to tell their stories of trying to access protection insurance and to get behind a new petition to make their voices heard

Here’s hoping…

So, how will I be spending Steve’s Angelversary?

When publishing my blog posts, if I have not already done a blitz on Facebook and Twitter beforehand, I usually spend a good chunk of the day getting my blog out there to people. Apart from WordPress Followers of this blog, of which I am truly grateful to you guys, not that many people bother to read or respond. Nevertheless, I still feel the need to share and commemorate Steve, who still inspires me and hopefully inspires others.

This year tough I will not be engaging with social media. It is not because I have given up, and certainly not because I don’t want to share mine and Steve’s story any more. Neither is it because I am not keen to use it as a platform to keep the HD Community up to date on subjects such as ABC vs St George’s Healthcare. It is because I took a decision at the end of last year to go cold turkey on social media for January.

I don’t drink; don’t smoke; have no social life to cut down on as it were. If I went on a diet I suspect my colleagues would be looking up Eating Disorder Clinics as I am apparently underweight for my size. That said, my colleagues only get sight of my very skinny wrists and bony neckline. They don’t see my spare tyre around my waist thank god!

Once I have pinged this blog on WordPress, and maybe put a link to it on the HDA Message Board for friends who will be thinking of me and Steve, I will watch a Queen video or two (the band, not HRH) and gear myself up for the big event of the day.

I couldn’t face going to the cinema to watch Bohemian Rhapsody without Steve by my side. I have pre-ordered the DVD on Amazon but it is not likely to be sent until March. I have plenty of others to watch with him in spirit though.

As for the big event I refer to…

In my blog ON THE WINGS OF AN EAGLE & DOVE; CARRIES FAITH, HOPE, & LOVE, written for what would have been Steve’s 56th birthday, I highlighted how I (for that read we) would be watching Crystal Palace Football Club on the television. They were playing a very important match. One that could decide their fate as to whether they stay in the Premier League or get relegated. They stayed up I am pleased to report.

Later today, Palace will be on BT Sport2 playing Tottenham Hotspur Football Club in the third round of the FA Cup. It is particularly poignant as Tottenham are effectively Steve’s second team. His dad was a fan having been brought up in the Tottenham area before marrying and moving to Beckenham. My blog Playing for Laughs touched on this.

The game will have finished by 20:20 hours which is approximately the time Steve drew his last breath. Eight years on but I still like to mark the time in silence. It is always the anniversaries and special occasions that have the toughest gradients in the pathway of grief.

Whether anyone else gets to see and read this blog it doesn’t really matter. What does matter is that I have done it. To help myself, and for Steve to know wherever he is that he is remembered by me.

As I often do, I have ended with a picture and a poem. Actually, we are talking a couple of pictures. Both taken on holidays in Jersey. One from 1991 and the other from 1996. We visited Jersey a few times, initially sparked by our love of the programme Bergerac. Maybe my obsession to play detective and investigate thing comes from mine and Steve’s love of true crime programmes, and of fictional detectives like Bergerac? That said, I am more Caramac than Bergerac.

Although I could never give up chocolate, I would like to think Steve is proud of me for giving up the booze; for not losing my tenacity to find answers and get stuff done; and, of course, for never giving up on him!

 

 

Eight whole years have come to pass and still I think of you;

With no regret, my sights now set, on what is left to do.

The first few years brought pain and guilt; trying to find a reason,

To why I still woke up each day; each week; each month; each season.

 

Another anniversary and only time will tell,

if time was simply wasted or was time that’s been spent well.

And days I fill with searching for that extra information,

To help to form some clarity where needing explanation.

 

A fool with too much time on hands, I’m sure that’s how I seem;

We can’t take on the world my love, but surely we can dream?

The Dainton hung; the daughter lied to; clear discrimination;

It’s not like any one of these impact our situation.

 

There’s plenty people out there who can impact if they care,

So does it really matter if this input leads nowhere?

That’s not the point though is it, the point is One shared Vision;

As long as I feel you’re with me, I know we’re on a mission.

Perhaps I could add one more link which I know Steve will appreciate:

Queen – One Vision

Happy Angelversary Sweetheart XXX

 

GIRL WITH A PEARL HEARING

Today would have been mine and Steve’s ‘Pearl’ Wedding Anniversary. Thirty years ago today we tied the knot and although the ends have been pulled apart, as readers know by now, I still like to come in here and mark the day. My previous anniversary posts can be seen here:

2011 AND THE WISDOM TO KNOW THE DIFFERENCE

2012 SELF INDULGENCE

2013 SILVER RINGS & SPARKLING THINGS

2014 DEDICATION NOT MEDICATION

2015 A WEALTH OF MENTAL HEALTH

2016  WARNING SIGNS & TUBE – TRAIN LINES

1017 REGISTRATIONS & MISCOMMUNICATIONS

In my previous blog  I touched on a little project I had taken up. I wanted to look into the case of Alfred Henry ‘Harry’ Dainton. I can’t recall exactly when I heard mention of a murder and murderer in the Dainton family. Reassuringly though, it was also mentioned that the events happened a long, long time ago.  In 1891, Harry was convicted of murdering his wife – Hannah – by drowning her in the River Avon. With the advent of the internet I had always planned to do a bit of research into their story when I had the time.

When meeting some of Steve’s family in October 2017 at his cousin’s funeral (as mentioned in my blog HERE) I discovered Steve’s uncle had also shown an interest in finding out more about Harry. He had even spent a day at the National Archives in Kew to see what they had on the case. At least I knew then that I was not the only one who was curious.

To find out more for myself, I ordered the Trial Notes Case File from Kew. As requested, the File arrived in the form of 52 JPEGs. You can see one of the JPEGs, along with the text of a rather long press cutting submitted as part of the Case File (re-typed verbatim by me), in Claire Sully’s blog HERE and HERE.

When, in my last blog I used the word ‘spooky’, it was not so much to do with ghosts – although Shepton Mallet is said to be ‘ Britain’s most haunted prison’. The spooky aspect was more to do with the timing of my getting my butt into gear and properly going on-line etc.

Harry was buried in December 1891 in unconsecrated ground within the Prison walls. It was reasonable to assume he had lain undisturbed for over 100 years, and that he would be undisturbed for many, many more years. As I started looking into the matter I was surprised to find Shepton Mallet Prison had been bought by a property developer with plans to make the site into luxury flats. City & Country (C&C), bought Shepton along with several other prisons sold off by Ministry of Justice a few years ago. My timing, however, coincided with things stepping up a bit.

As things stand, I am waiting to hear back from C&C and/or the archaeologists – Cotswold Archaeology, on what will happen to Harry and the other six prisoners who are buried there.  Other local issues apply which are halting C&C’s progress but I believe discovering real evidence that prisoner’s bodies are still likely to be there (see Cotswold’s Report HERE) will have put a spanner in the works where C&C have legal obligations not to erect buildings over human remains.

The Cotswold Report only names and dates burials of two prisoners –  ‘William Bignal on 24th February 1925 and John Lincoln on 2nd March 1926’. That does not mean Harry and others are proven as having been removed, or developed over in one of the previous gaol developments when consideration for human remains was less regulated.

Harry and the others are, I believe, still likely be there. I hope however, because they were buried over 100 years ago, that they are not effectively written off as collateral damage! Taking a look at the 1922 Home Office diagram we can see that it would be hard not to disturb the other graves where they are in such close proximity to each other.

 

 

 

 

The legal obligations were in place anyway but I think the developers would have been surprised to hear from someone called Dainton asking questions about what their plans were at such a critical time. In fact, it was only when I asked certain questions by way of using a Freedom of Information (FOI) request addressed to Ministry of Justice that I was able to get a response confirming C&C would have been aware of bodies needing their consideration. Up until that point I was being answered along the lines of with “if we find any bodies”.

The FOI response did helpfully provide the 1922 map and list of exactly where the individual prisoners potentially lay (see above photos) which they stated was provided in the tender pack to all bidders. I am afraid C&Cs’ being somewhat circumspect about answering my initial enquiries does nothing to help me feel confident they are affording the bodies the priority they deserve.

I hope I am proved wrong but I am aware C&C have been criticised in other quarters for their handling of other projects. Dorchester Prison has had  longstanding issues surrounding the treatment of its own prisoner burials.

Going back to the case of Harry and Hannah, when I had been looking up references to get information before searching in earnest, there were a couple of things that struck me and sent warning signals. Did Harry or Hannah possibly have Huntington’s disease (HD)?

In Harry’s evidence he said Hannah had ‘threatened to do away with herself’. In other evidence he accounted for having wet clothes as having tried to commit suicide ‘he had jumped into the river as he had wanted to do away with himself’. This had been picked up on in websites briefly mentioning the story. With suicide being so prevalent in cases of HD it did make me wonder.

Add to that the case I have been following known as ABC V St George’s, where a husband who had undiagnosed HD killed his wife, I wanted to see if there were any signs that HD could have been at play in Harry and Hannah’s sad tale.

After satisfying myself as far as I could HD was very unlikely to have been a factor in their story, this being based on the information I had including the trial evidence and newspaper reports from before; during; and after the trial (and trust me on this, I have scrutinised hundreds of on-line reports looking for clues), I made more of an effort to make contact with living relatives to highlight the sale of Shepton. I also needed to satisfy myself Steve’s own Dainton branch blood-line was far removed from Harry’s. Bad enough being told of/reminded there was a murderer in the family, let alone there could have been a genetic hiccup like HD involved.

With the help of other Daintons who have also been looking into the genealogy of the couple’s bloodline, I was able to trace descendants of one of Harry’s brothers. Harry and Hannah did have several children who were made orphans.

One of the children was blind. Elizabeth’s story hit me quite hard where in other family site references it had been assumed she was well looked after in a school for the blind. During my on-line newspaper searches, I uncovered she was only able to stay there a short while and was sent to the Workhouse. On further investigation, she died in the Bath Union Workhouse within three years of being made an orphan. God knows what sort of existence she must have had bless her.

 

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Many of the others were sent to Canada from Dr Barnardo’s under what is referred to as British Home Children. It has therefore been more complicated trying to trace existing linear family. Initially I was trying to find relatives who might want to help support the need for Harry’s remains to be respected by C&C etc. More weight would obviously apply if living blood relatives took an interest.

The tracing of relatives also, again spookily, coincided with another area of my taking up Harry and Hannah’s story. By chance, I saw an advert in a TV magazine saying Chalkboard Television Production Company was looking for historic crimes where there may have been a miscarriage of justice. More details on the BBC Programme Murder, Mystery and My Family can be seen HERE. If taking forward stories, Chalkboard do need to make efforts to find living relatives/descendants and my efforts thus far would help.

From what I had read of the case, I thought there could be consideration given to whether Harry was wrongly hung. I would need to do a whole blog on what leads me to that conclusion but several areas worried me. Not least, even if Harry were proven to have been involved, should he have been found guilty of manslaughter as opposed to murder which carried a lesser sentence and not the death penalty?

Chalkboard have spent months looking for more evidence to help research the case further but have been hampered by the lack of existing documentation given we are talking over 100 years ago. The story cannot therefore be taken forward at this stage but they do feel it is an interesting case. They have said they will get back to me should anything come to light which might raise a strong legal argument either for or against Harry’s conviction being unsafe. The programme makers are always keen to ensure those taking part bear in mind that what they uncover can lead to more evidence against innocence than for.

Harry never confessed to the crime but, given the circumstantial evidence, it is hard to see that he would not have been involved in some way even if it were unintentional death. Maybe he went too far in trying to teach Hannah a lesson where at the end of his tether? Several times on the day of the drowning Harry would say to people comments along the lines of “If I keep In the same mind as I am now she shant walk about as she is now”. Harry’s actions on the day, and his bizarre actions in trying to cover his tracks afterwards, did not help his case either.

I should point out Harry had a record of being a violent man. He had only been out of gaol a few days prior to the drowning having served seven days for a previous assault on Hannah, and on condition of being bound over to keep the peace for three months. That said, Hannah herself was no saint and had been in brushes with the law for assault.

Alcohol consumption, on both sides, clearly played a part in their turbulent marriage. Harry wrote letters in his last days pleading with his siblings to ‘give up the drink’. The Temperance Society even used Harry and Hannah’s story as an example to further their cause of the evils of alcohol. Apart from making peace with his family, in his last days Harry showed signs of remorse. It was taken as a form of confession when he was reported to have told the Prison Chaplain ‘he admitted the justice of his sentence and he would confess all he had to God himself, and not to anybody on earth.’

It is shocking how quickly things moved on from the time of the drowning to the execution. The drowning took place on Tuesday 8th September 1891. Harry’s sentence was given at the trial heard before the Assizes on Tuesday 24th November 1891. Prior to that there had been a Coroner’s Inquest which took place Friday 11th and Monday 14th September; followed by a City Police Court hearing on 17th and 18th September.

Although Harry was called to give evidence previously, from what I gather Harry was not called to give evidence before the Assizes on November 24th. Certainly there are no references to the ‘Prisoner’ giving evidence in the Judge’s (Justice Sir Lewis William Cave’s) own Court Notes apart from one line on page 24 of 26 pages ‘Prisoner’s Statement put in’. It is not clear if that was a submission from Harry or his Defence Barrister.

The Jury took just twelve minutes to find Harry guilty!

According to the Shepton Mallet Journal dated 27th November 1891, Harry made no answer when the Clerk of the Assize informed him that he stood convicted of the crime of murder, and asked him if he had anything to say why judgement of death should not be passed upon him according to law? The article then goes on to say that after the Judge placed on the black cap, and proceeded to pass the death sentence, only then did Harry respond. ‘The prisoner when being taken away by the warders, turned round to the Judge, and said: I didn’t do it. I was at the bottom of Westgate Street when the clock struck half-past ten.’ The Judge replied with ‘It is no good adding this falsehood to your crime.’

I don’t think the Jury actually thought the sentence of hanging would be carried through. In fact, as the Judge’s notes confirms, the Jury asked for a ‘recommendation to mercy on the ground of the aggravating conduct of his wife.’

HO_144_241_A53388_044

Several petitions were sent to the then Home Secretary – Sir Henry Matthews – to plea for mercy. The Sheriff of Somerset, who had sat through the trial, even travelled to London to request an audience with the Home Secretary to ask for the sentence to be commuted. All was to no avail. On Tuesday 15th December 1891, just ninety nine days after Hannah’s life was cut short, Harry was taken to the gallows and executed. Harry is said to have expressed that he hoped to be reunited with Hannah in Heaven.

Whatever the circumstances and facts of the case, I am glad that we no longer subscribe to capital punishment. In my work as a Mental Health Tribunal Clerk I sometimes sit in on hearings for ‘Restricted‘ patients. Some of those patients may well have been sentenced to capital punishment if still in force and their mental illness not uncovered in time.

Who knows what would have happened to the Patient in ABC vs St George’s had such swift ‘justice’ been dished out? And who knows if Harry himself was suffering from an undiagnosed mental illness that would have, I’d like to think, been picked up on in this day and age?

Having established HD was unlikely to have filtered through to Steve from Harry or Hannah’s gene pool, I started tracing back along Steve’s own blood line. I could be totally wrong here but I think HD may have entered via his Great, Great Grandmother who was not a Dainton by birth but, like me, had married into the family. She died in 1892 aged 56.

The death certificate gives the cause of death as Phthisis Chronic and Acute Bronchitis. The Medical Definition of phthisis is ‘ a progressively wasting or consumptive condition.’ Steve’s Great, Great Grandfather lived to be 86 which probably would have been too good an age to die with HD in those days. Many of their children died relatively young, including Steve’s Great Grandfather.

George Huntington, whom the disease is named after, identified a form of genetic illness in his 1872 paper ‘On Chorea’. It would take many, many years for HD to get to the stage of being a disease recognisable through symptoms. Some, myself included, would say we are still not there yet.

So…

Since my last blog I have been a tad busy and there is still so much more to look into. I am still here with Steve’s ashes and his subtle and not so subtle ways of guiding me to things. Who knows what else may be uncovered?

I said at the beginning of this blog (apologies for the length but you know me by now) that I couldn’t recall exactly when I heard mention of a murder and murderer in the Dainton family. Thinking about it more, and looking at Steve’s own direct linear, I probably heard in a roundabout way on 21st August 1987. That was the date I went out with Steve on our first proper evening ‘date’ and he mentioned his father had Huntington’s. A disease such as HD had murdered generations of his family with no mercy. I witnessed Steve’s bravery even up until his final moments. I can certainly say Steve was innocent. He did nothing to deserve the death sentence that HD can bring.

I hope that Harry got to be reunited in Heaven with Hannah. For all his faults I am convinced that Hannah would not have wanted Harry’s life to end on the gallows. If not in Heaven, maybe helping to get Harry reburied on consecrated ground if possible is part of helping him on his journey back to Hannah.

Steve's TreeIn my Will I have instructed that my own ashes be laid to rest next to Steve’s. We had Eltham Cemetery stipulated. Now though I rather fancy the idea of looking into going somewhere like this – Eden Valley Woodland Burial Ground. Resting under bluebells seems rather attractive.

Steve does already have a memorial tree by way of a sapling I sponsored in Hundred Acre Wood planted through Woodland Friends. It is planted in a lovely peaceful place and I went to see the the sapling not long after planting. I don’t think they have branched out yet (excuse the pun) into the woodland burial sector.

Thirty years ago today I had no idea getting married to Steve would take me on such an amazing journey. Whether I live another thirty days or thirty years who knows what next strange path I will be walking through. Or what I may be treading over.

I shall end with a new poem, along with a photo taken thirty years ago.

The family tree of you and me stops dead upon the chart;

No roots extending further down where children take no part.

We both decided long ago our genes be not extended;

Steve and Trish 9

And so it is when I am gone our family will be ended.

 

But maybe one day years from now a child will stop to view,

A wooded bloom of bluebells that emerged from me and you.

Not rotting leaves and detritus in shaded canopy,

But sun and flowers and rainbow showers which wash you more to me.

Happy Pearl Anniversary Sweetheart. xxxxx

 

SUPERSONIC FLIGHTS & HUMAN RIGHTS

Today (14th May 2018) would have been Steve’s 57th birthday. As ever, I have come in to mark the day with a new blog entry and poem.

My previous birthday blogs can be seen here:

May 2011 – I MAY REGRET THIS…

May 2012 – TOASTING & BOASTING

May 2013 – ONE DOSE OF TWEETMENT OR TWO?

May 2014 – THE SHOW MUST GO ON

May 2015 – THE FAIRNESS OF AWARENESS

May 2016 – POETRY IN EMOTION

May 2017 – ON THE WINGS OF A DOVE; CARRIES FAITH, HOPE, & LOVE 

Twenty years ago today, Steve and I were celebrating his 37th birthday on-board The Oriana Cruise Ship. We were actually docked in Barcelona on his birthday and we had spent the day with fellow passengers on a shore excursion. We visited the Town Centre taking in the sites such as Gaudi’s Cathedral and Spanish village. That evening at dinner, as they do on cruises, the restaurant made a fuss of all those with birthdays. It was a fabulous day and night!

Barcelona was the mid-trip stop. The cruise had already taken us to St Tropez. After Barcelona we arrived in Florence. We had seen many pictures of the buildings in Florence but none of them had prepared us for just how stunningly beautiful the architecture was in real life.

Unlike in London, where pollution takes its toll on many historic buildings, strict transport bans in the Centre of Florence meant the beautiful coloured marble of buildings like The Duomo Cathedral and the magnificent bronze relief doors of The Baptistery were truly a sight to behold!

After an all too brief tour of Florence, our party took a coach ride to Pisa. We didn’t actually have time to get off the coach and walk around Pisa itself. Photos of the famous Leaning Tower  were taken through the coach window, so sadly we didn’t get to do the obligatory photo of one of us trying to lean too so as to make it look straight. We had been delayed leaving Florence and were now in a rush to catch a plane back to London.

At the start of our holiday we had arrived to board The Oriana in style. From London Victoria Station we took  The Orient Express  to Southampton enjoying a champagne lunch. As part of the package, we would be returning home in even more style. Aboard Concorde no less!

I booked a car and driver to pick us up from Heathrow and take us back to Erith. I couldn’t bear the thought of all that luxury being undone by the usual challenges of travelling on public transport. Feel free to call me a snob.

With the Huntington’s disease (HD) sword of Damocles hanging over Steve’s head, we had decided very early on that we were going to make the most of every day. Given late thirties/early forties as being the typical age for starting to develop HD symptoms, we planned packing in as much as possible before hitting forty.

Both Steve and I were very saddened when Concorde was taken out of service in 2003. We were so very grateful that we got the chance to fly on her. As I have said in previous blogs, so many people put off stuff until tomorrow. For some, tomorrow never comes.

Forward supersonic fast to 22 November 2017. I was sitting at my computer with my morning cuppa and logged on to the BBC News Website. Among the story links on screen there was one on Concorde. Forty years ago, on 22 November 1977, Concorde made her first commercial flight between London and New York. The linked article was entitled – Concorde stories: Remembering the ‘pocket rocket’. The link to the article is HERE.

I clicked on the link and started reading. I scrolled down the screen enjoying the shared experiences. Then, to my utter amazement, I saw it actually included an anecdote I had shared on another website a long while back. Mine and Steve’s anecdote had been chosen to be used within the BBC article under the heading ‘The memories are precious’. 

It was a wonderful surprise! It was just by chance that I found it where not working that morning and having time to browse. An early anniversary present from Steve no doubt.

I am sure you have guessed by now that the above covered ‘Supersonic flights’. So what of the ‘Human Rights’ reference in the blog title?

In my previous blog I mentioned getting a name check in the House of Commons (HC). No, I have not been involved in chaining myself to the railings of HC. Nor have I been pulled up for allowing Pinky Sybil to use a lamppost opposite. Check out my #SybilOnTour #LondonUnderground video HERE if you have not already seen it and know where I am coming from.

The background to the HC mention is this…

Back in January, January 3rd to be precise, I logged onto Twitter for a nosey at what’s occurring and was surprised to see a tweet from Scottish Huntington’s Association (SHA) stating this

 We have succeeded in getting a Westminster Parliamentary debate around Huntington’s disease and #geneticdiscrimination on Monday January 8. Please lobby your local MP to take part and end this practice. Find out more:  

https://hdscotland.org/genetic-discrimination-a-barrier-to-equality-says-charity-chief/

The subject matter focused on being able to purchase insurance and life cover when it comes to families with a genetic link to HD. The discrimination was not news to me. Back in 2011, when compiling my book, I featured my poem ‘The Insurance Salesman’. You can read the full poem below. With many stories of families being penalised, I was angry the government had allowed HD to be singled out as a named disease for discrimination when it came to insurance.

The Insurance Salesman

 Introduction

In October 2000, Britain became the first nation to approve the commercial use of gene technology to allow insurers to refuse insurance cover; or to push up premiums for those born with genes that could lead to fatal conditions. HD was singled out as the only case allowed immediate discrimination because of the reliability of the test. This meant for a person having tested positive, insurers gained the right in certain circumstances to refuse to insure, or to legally load the premium to extortionate levels (300% has been cited).

So let’s take a hypothetical scenario…

Let’s say a person took the test at eighteen and tested positive. There are no signs of HD but he wanted to know if he had the gene. At twenty, he applies for cover but has to declare a positive gene result and the cost of the insurance cover reflects this. At the same time his twenty year old neighbour has also applied for cover but he does not have any record of HD in the family. That’s not to say he has no links to HD or any other potentially fatal disease, he just doesn’t know about it yet. His policy costs 100% less.

The HD+ person pays the loaded cover pricing from day one but, where HD is not an exact science, he does not become symptomatic until in his sixties (known as ‘Late Onset’). In those forty years, before symptoms appear, the person has led a HD free and health conscious life whereas his neighbour has not, and needs to draw on the cover much earlier.

It occurs to me there seems to have been no consideration of the fact that until symptoms start showing and presenting a problem, the person with the HD gene may have the gene but does not have HD itself! It’s no wonder this discrimination drives some people to delay testing where they feel it may compromise their right to be treated fairly being refused mortgage cover etc.

Please note: As at time of writing this (March 2011) The Association of British Insurers (ABI) has a Code of Conduct stipulating rules which all its Members are obliged to follow. The Code sets out clear guidance where the use of genetic information may be used in calculating cover requirements. No Insurer can request an applicant take a genetic test for consideration of insurance. Set levels of values of policies dictate whether test results can be used in the assessment.

The HDA have prepared a Fact Sheet ‘Advice on Life Assurance, Pensions, Mortgages etc.’ which is available direct from the HDA or accessed through their website.

He’s looking at the paperwork;

He’s thinking of commission.

He’ll reach his bonus target soon,

Just one more sale he’s missing.

 

And this signed piece of paper,

Will take him to his score.

Be home in time for dinner;

So glad he chose this door.

 

But hold on, wait a minute;

What’s she put on that bit?

‘Genetic testing… Huntington’s’,

He nearly has a fit!

 

He grabs the piece of paper;

Ignores her look so sad.

She thinks that we’ll insure her life?

The woman must be mad!

 

The MP taking the debate forward was Gavin Newlands. I approached his office and through exchanges with his staff by e-mail and phone I was able to highlight various elements of HD discrimination. My examples and links to examples were gratefully received.

My input must have made an impression as, in the course of his speech, Gavin mentioned me personally and referred to Steve which I was touched by.

The SHA believes that the business model that many insurance companies use to calculate risk is limited and does not collect all the genetic information available to calculate more precisely an individual’s health conditions. In other words, if we must use genetics, let us use them properly. This point is reinforced by an email that I received from Trish Dainton, whose husband sadly passed away from Huntington’s. She highlighted the unfairness of a system that can increase an individual’s premiums to ridiculously high levels on the assumption that they might have the HD gene but might not start developing the symptoms for 40-plus years.

A video of the speech can be seen HERE and the full Hansards entry can be accessed HERE.

As luck would have it, a Cabinet re-shuffle was made very shortly after the 8 January debate. When I say very shortly, I mean the very next day. My heart sunk when the Minister with ears for the matter and potential power to make change, (Stephen Barclay) would now have no further direct involvement. At least Stephen was moving to Department of Health and Social Care so the plight of those with HD would at least still be fresh in his mind.

In the shuffle, the Economic Secretary to the Treasury and City role was dealt to John Glen. Whether down to lobbying by SHA, or down to John being committed to pick up the baton from Stephen and and run with it, it was a relief to hear John kept his colleague’s promise to meet again with SHA etc. The meeting took place just a few weeks later, on 21st February. See HERE for a press article on the meeting.

In the intro of my poem I highlighted this point:

No consideration of the fact that until symptoms start showing and presenting a problem, the person with the HD gene may have the gene but does not have HD itself! Another side of that also applies. Just because HD is in the genetic makeup of the person, that doesn’t mean they would not need cover against other health conditions. As things stand, it appears companies are blinkered and using HD as an excuse to deny offering a full and fair choice of policies. John Eden, Chief Executive of SHA, wrote a marvellous piece on the issues. His article ‘Until the Penny Drops’ can be read HERE.

Surely it is a HUMAN RIGHT to be given the same options as any other person? Maybe a Human Right’s Lawyer will take it on one day. In the meantime; to the Insurance sector I would like to say:

PEOPLE WITH HD DESERVE UNDERWRITING, NOT WRITING OFF!

Here’s hoping the work done by the SHA and others now moves forward at a supersonic pace, rather than a snail’s pace as it has done in the past. One of the new jet boosters must surely be the Pandora’s Box of genetic testing for other conditions. I have a feeling it will be the start of something big.

As for other news…

I have not done much about finding Steve’s CAG count so that’s still on my list of things to complete. Everything seems to have gone quiet on ABC Vs St Georges. I dare say it will make the news headlines again at some stage.

Being a Gemini, I have another project on the go which is taking up a lot of my time at the moment. I am looking into the very interesting story of Henry (Harry) Dainton. Harry was hung at Shepton Mallet for the murder of his wife in 1891.

For quite a few years now I have been thinking about delving into the story. This year, I thought I would finally do more research. Readers of my blog will know I often refer to being drawn to things and there turning out to be a spooky serendipity element. This compulsion has turned out to be spooky too. You can get a taster in Claire Sully’s Blog entry UNCOVERING SHEPTON MALLET PRISON RAISES MORE QUESTIONS. To be continued in my next blog.

For now though…

I am going to end on a new poem and some snapshots from our May 1998 trip – Steve on Orient Express looking wonderfully smug; Steve posing in St Tropez and Steve getting ready to board Concorde. I was tempted to add loads more snaps but you get the picture (literally) At the very end there is a link to another Queen track. I am sure you can guess which one it might be.

Twenty years ago my love, we were living the dream. Orient Express

Strangers looking on with envy; not all it would seem.

Spoilt, with more money than sense, I’m sure that’s what they thought.

Even friends and family, into that myth they bought.

 

We were buying memories; investing in the past.47 St Tropez Steve 1

A time to store experience; each trip could be our last.

I’m glad I caught your travel bug and shared such times with you.

It’s fair to say the bug was cured the day your life was through.

 

There’s nowhere now I’d rather be; no bucket list to write. Steve about to get on Concorde

I’ve done all that I dreamed about; not least a Concorde flight!

How many people out there get to do what we could do?

The nightmares of HD were there, but still good dreams came true.

QUEEN – ‘DON’T STOP ME NOW’

Yes, we made a Supersonic Man out of You!  

Happy Birthday Sweetheart! XXX

 

PROCRASTINATING OVER THE CELEBRATING.

21 Criceith 1

Today (27th January 2018) is Steve’s 7th Angelversary so I have come in to post up a new blog entry and poem in remembrance.

My previous Angelversary blogs and poems can be seen here:

2012 MOVING PICTURES

2013 RING A RING O’ ROSES

2014 INSPIRATION NOT FRUSTRATION

2015 REACHING FOR THE TEACHING

2016 COINCIDENCE OR SIXTH SENSE?  

2017 PHOTOGRAPHIC MEMORIES & BLIND FAITH

In the seven years since Steve hooked up to his angel wings there has been a lot of progress in the field of medical and biological science.

Like a lot of the Huntington’s disease (HD) Community I have been very sceptical when hearing news reports heralding a breakthrough. On December 11th 2017 however, just 17 days after I posted my last blog – REGISTRATIONS & MISCOMMUNICATIONS ,  there was an announcement that was hailed as ‘the biggest breakthrough in neurodegenerative diseases for 50 years.’ One of the scientists at the forefront of the research is Dr Sarah Tabrizi who I mentioned in my last blog.

A couple of the media articles are given below:

BBC News article here.

The Guardian article here.

The story headlined a number of news channels and newspapers on 11th December but I was struck by the difference in numbers when the prevalence of HD was being quoted. Just looking at the text of the articles linked above we see:

The BBC state ‘About 8,500 people in the UK have Huntington’s and a further 25,000 will develop it when they are older’ . I picked up on the words ‘will develop it‘. By saying ‘will’ it suggests the 25,000 have already been tested and have proved positive for the gene. That seemed very odd as that would suggest a potential explosion of cases down the line.

Whereas, The Guardian state  ‘About 10,000 people in the UK have the condition and about 25,000 are at risk.’ I was more inclined to think ‘at risk‘ was a more realistic representation.

I sought clarification from the Huntington’s Disease Association and they replied

We are quoting around 8,500 people who have the HD+ gene. Estimates from around the world suggest that there are about 3 times as many people at risk of having the gene. So it matches that around 25,000 people in the UK are at risk.

The Guardian will be relating to new mutations which will include Intermediate Alleles.

Since the Ionis announcement, we have seen a large referral rate and so have genetics depts and research sites. The HDA doesn’t know everyone who has HD in the family but we are currently working with around 5,000 people who are diagnosed with the adult form, 103 with JHD, almost 6,000 who are at risk and almost 4,000 carers. These figures are set to rise because of the HTT lowering trials.

I hope that helps to give some understanding of the figures but they are very fluid and variable.

Going back to the trial itself, it is worth noting that the new research does not herald a cure. Certainly, it is not announcing an instant cure or available treatment. We are talking the success of a very small trial involving 46 people.

In the trial, evidence was found to suggest a drug injected via a lumbar puncture procedure, affected the mutant huntingtin protein level. More importantly in drug trial terms, it seemed to show the drug was safe and well tolerated. I’ll leave it to HDBuzz to explain the science bit.

The fanfare was loud. Realistically though it is a long way off from being an automatic route within the HD treatment pathway if indeed it ever comes to being a signed off and available treatment.

Much more testing and monitoring needs to take place and only certain categories of HD patients would be suitable for next-stage trials etc. Again, it’s best that I leave it to HDBuzz to provide more detail by way of a very interesting yet very sobering ‘Ask the expert’/Questions and Answers (Q&A) report.  

Whatever way you look at things, it is a very big leap forward considering so many have been treading water before now. I am, of course, very happy for those with HD or at risk who can at last see a little glint of light at the end of a very long tunnel. I would be lying though if I didn’t admit it hurts that the progress was too late for Steve.

Would I have been more excited had Steve still been alive and with me now? Unless he was still pre-symptomatic, or we had children and grandchildren at risk, I have to say the answer to that would have been “no”. That is not just based on the reality check that the HDBuzz Q&A report provides. It is based more on knowing Steve.

Back in 2008/early 2009 I had been reading about a drug called Memantine which some HD patients in the United States had been taking. The drug was actually approved for use by patients with Alzhiemers. As such, it was not normally available to people with HD and I was aware the UK seemed to be way behind in offering non-HD targeted drugs to patients.

I was not only reading the stuff you get by way of a generic sweep of the internet. I was reading the first-hand input from people on an American HD Message Board. Real people coping with HD at a post-symptomatic stage and it looked like the drug did seem to be having a positive affect from what I was reading.

Steve was due to have a check up with his Neurologist at King’s College Hospital (Movement disorders unit) in May 2009. I took the opportunity to take in print-outs on Memantine, including copies of the Message Board posts, to ask the Neurologist’s views on whether it was something worth looking into? He agreed to look at the papers and let me know his views.

I confess I was getting pretty desperate by then. In the space of a few months Steve had gone from walking, albeit unsteady and with a gait, to being totally wheelchair dependant. It was clear he was going downhill fast and I was keen to do something to halt the progression and try to wrestle back control by doing something; ANYTHING!

A few months later I sat down with Steve and spoke to him about Memantine to ask whether or not he would actually be willing to try it if the Neurologist were to say it could be prescribed? We had not had any feedback yet either direct from King’s, or by way of a patient copy letter where Steve’s doctor would be getting details of what happened when seen at the last hospital appointment.

I was keen to respect Steve’s wishes and I didn’t want him to feel any pressure/ambushed if the go ahead to prescribe was given at the next HD Clinic. I needed to explain it might not help anyway even if we did get the go ahead to use it, but maybe it would be worth a try just in case it could help him a little? I also needed to explain as far as possible the risks where it was untested for use on people with HD. No one knew if it could have negative side-effects making life even more difficult.

After explaining to Steve as best I could, I typed out and printed a sheet of paper which I placed in front of him and gave him a thick black marker pen. The note is shown below along with Steve’s response. You can just about make out a black splodge on the word ‘NO’. Steve was unable to write by then but he was able to hold a pen for a little while to make his mark bless him.

Memantine Note redacted

Looking at my typed note I see it is covered in liquid stains. That liquid was actually from a beaker of Guinness which I managed to spill in the bag I was holding  papers in for the Clinic. Seeing stains would have made me annoyed at one stage.

The Guinness brings back vivid memories of how I would have to pack for every eventuality. Steve’s OCD around his time of needing his certain foodstuffs and drinks. I could relax more if we were held up waiting for hospital transport to get home if I had items with me just in case.

Now I smile with gratitude. Physical items which link directly back to time with Steve, be they pre or post HD symptomatic, are treasured. The Guinness stains simply remind me more vividly of our trips to hospitals and how I was able to do my best to anticipate what may be a challenge and plan accordingly. It is now evidence of a day with Steve, a tactile snap-shot in time.

Neuro Letter

In November 2009, we finally got sight of our copy of the Neurologist’s letter to the doctor.

Not a case of being lost in the post, just a very busy Neurologist. To the right is text extracted from the letter.

 

There we have it… The Neurologist had agreed to try Steve on a two month trial on the basis of  ‘ there is probably not a lot to lose’.

Part of me was pleased the trial use of Memantine had been sanctioned but I was aware Steve had already been reluctant to try it so I would have to say “thanks but no thanks” after all.

I asked Steve again of course in the light of our now having formal sign-off. Steve’s answer was the same as before. Would it have made a difference and enhanced Steve’s quality or quantity of life? I can’t say but I am still glad that I took the idea to the experts, and more so that I took Steve’s wishes on board. Steve’s mental capacity was such that I still needed to give him credit for knowing his own mind on such an important issue.

Would I have opted for Memantine as a last resort if I were in his shoes? I think I would have said “yes” a while back based on the ‘not a lot to lose’ argument. However, I’m not so sure now.

In my previous blog I  mentioned I would be seeing my doctor about my own health issues where being forced to change medication (meds). To cut a very long story short, after seeing the eye Specialist on 10th August I wanted to look into my osteoporosis meds to check they did not contain anything that could explain why my eye pressure is still abnormal.

Imagine my shock when the first webpage I clicked on showed this heading:

Osteoporosis drug strontium ranelate (Protelos) no longer available after August

The full article, which was posted in May 2017 by the National Osteoporosis Society (NOS), can be read HERE.   

I immediately got in touch with my doctor and Pharmacy, who incidentally had just signed off a two month prescription two weeks before, and asked if they were aware of this? I also dug out a Memo from The National Institute for Health and Care Excellence (NICE). The Memo was supposedly sent to surgeries. It was clearly either not received or simply ignored as  my news took everyone by surprise!

There is mention in the NOS article  that safety concerns over cardiovascular risk was linked to low levels of prescribing. Interestingly the NICE Memo makes no mention of this.

Servier will cease production and distribution of strontium ranelate at the end of August 2017. This worldwide and strategic decision has been taken for commercial reasons due to the restricted indication/limited use of strontium ranelate, and the continuous decrease in the number of patients being treated with it

After the Pharmacy made further checks, I was able to get my doctor to agree to request my review with my Rheumatologist (originally due in mid 2018) be brought forward. I also insisted on a DEXA Scan so as to have a baseline to work from if not able to get anything in place for several months.

I got appointments for my scan and to see my Rheumatologist within a few weeks of my kicking up a stink. My Rheumatologist did not apologise for no one seeming to have got their acts together to tell patients. I was basically asked what I wanted to try instead.

The options on offer were a daily tablet – raloxafene (Evista) – or a monthly one – ibandronate (Bonviva). It was clear neither medication would be anywhere near as effective as Strontium. Indeed the results of my DEXA Scan had shown my overall bone density had increased by 1.5% for my spine reading and 7.5% for my hip on Strontium which was remarkable to say the least.

I had been on tablets like the ones on offer for years before Strontium was suggested. They had either been ineffective or I couldn’t tolerate the side-effects. I didn’t see the point in arguing so opted for the monthly tablet purely on a basis of less inconvenience.

There also followed a saga with my needing to challenge my prescription quantity. I may bore you another day with that saga as I am still not sure if it is resolved. Let’s just say it is along the lines of my poem ‘The Prescription’ if you have my book.

My experience with meds brings me back to the potential new HD drug/treatment story. Specifically two of the questions posed to Dr Ed Wild in his ‘Ask the expert’ session.

Q1:

Will the treatment be cheap enough for everyone to have access to the treatment without restrictions because of costs to the NHS?

Dawn

Q2:

I understand that this trial has established the safety of the drug and an initial indication that it may be effective. Will the next stage look at persistence within the body to start looking at what sort of drug regime may be necessary? For example, a lumbar puncture once a year to inject the drug is probably acceptable, a weekly one probably not!

David

Their respective answers were:

A1:

It’s too early to have any clear idea about cost so I can only answer in general terms. Developing and testing new drugs, especially advanced therapies like HTTRx, is very expensive – but on the flip side, managing Huntington’s disease throughout its course is already very expensive in terms of care and lost revenue. It wouldn’t make any sense for a company to develop a drug that nobody can afford – that’s bad business. My amateur prediction is that we can expect a significant price tag followed by a negotiation between healthcare purchasers and NICE that leads to the drug being made available. We may need to work together to ensure it’s made clear to the decision-makers what the unmet need is in HD – but that’s a problem for when we know whether the drug actually works to slow progression.

A2:

Everyone involved wants to come up with a regime that’s effective but has the fewest possible number of lumbar punctures. I expect different options to be tested in future trials, but we don’t yet know what those options might be.

These are very good questions. They pose the potential issue of having an amazing treatment but the patient being denied access through lack of funding resources or availability. And, even if the money etc is available, is it reasonable to prescribe and administer if the effective/therapeutic dose can only be given via frequent lumbar punctures?

There is clearly a lot to be worked through before treatment can be signed off. We can only hope that if the drug does turn out to be THE greatest tool in fighting HD since sliced bread, there is not then a case of it being too expensive; too impractical; or too limited in terms of too small a HD targeted audience.

That audience is rapidly growing though. I understand HD organisations and research bodies are now seeing a sharp upturn in registrations as a result of the breakthrough announcement. It seems like people are finally coming forward and out of the HD closet. Something at last worth putting your head above the parapet now for no doubt.

If nothing else comes out of the announcement regarding the drug being rolled-out, people coming forward is the best way to get a better understanding of the disease in the here and now.

An understanding into its prevalence; the challenges facing those testing positive and even those testing negative; challenges faced by carers be they family or external carers. Future challenges to the NHS. Maybe this will lead to the NHS not thinking in terms of “can we afford this treatment? But more in terms of “can we afford not to make full use such a treatment?”

The potential for use in other neurodegenerative diseases is also enormous. Let’s hope this aspect helps to galvanise the potential wider audience beyond HD. The last thing the HD community need is to be told later down the line by the manufacturer is that they are pulling production on grounds of restricted indication/limited use.  That would simply be too cruel!

I am aware of all the negativity this blog post is exuding. Perhaps I should swiftly move on to some better news.

We have a new recruit to the task force of HD awareness. Although nothing could ever fully fill the void that was left by Sybil when she went over the rainbow, Jackie Harrison and family decided a home is not a home without a Border Terrier.

Spike 2

Spike came to live with the Harrison’s a little while back. It looks like Sybil approved as a rainbow was in the sky when Jackie went to collect him.

As you can see from the photo he is already trying to recruit new families for Mini Sybils via @Jaq421. Please do think of re-homing a Mini Sybil and sending in photos and videos via social media. Spike, being a pup of the technology age, even has his own twitter account. Follow him @Spikeontour .

 

For my own part in raising awareness and fundraising, the HDA requested a snap of Steve and me plus a few words to use for a Christmas fundraiser.

They had set up a virtual Christmas Tree where people sponsored virtual decorations in memory of love ones lost to HD or currently battling it. The photo below is the one chosen and a link to the pinned tweet can be seen here.

46

Also, since I last posted, I have somehow managed to get one of my articles for another website onto a BBC News thread that commemorated Concorde; as well as getting a name check in the House of Commons! I will fill you in a bit more on the detail in my next blog. This one is already long enough as it is.

Before I close with a new poem for Steve, there is one more project that I have been involved with which has come to fruition.

Bringing proceedings back full circle to the reason for my coming in today, and wanting to remember Steve on his Angelversary, there is a new book out. Not a book by me but by the force of nature that is Ian Donaghy.

Ian wrote an award winning book a few years ago called Dear Dementia: The Laughter and the Tears. See Ian in action here on a Television interview as he spreads the word about the need for better understanding of dementia and better engagement by the public.

A couple of years ago Ian put out the feelers for doing a similar book covering the subject of grief. I sent in a few words and Ian included my entry under the heading ‘On the Beach’. I am just one of many contributors and each entry has been cleverly given a song title as a heading. Why ‘On the Beach’? You will just have to buy the book to find out.

The book was released in December and is called The Missing Peace: Creating a Life after Death. Contained within the 200 pages are anecdotes and stories of loss; love; life; hope; humanity; humility and even a touch of humour.

Each contributor has given their own take on grief or experience of it. Not just the loss of loved ones but of others who come and go in our lives. ‘Pets’ can be family and loved ones too and are also covered.

I would be very surprised to find anyone who couldn’t relate to at least one entry in the book, and who would not be helped by having their own experiences validated in some way. Reading that it is not just them alone who went through, or are perhaps going through, an experience they thought no one else could ever understand or identify with.

And so to end with another photo and a new poem for Steve. The photo was taken in 2005. Steve had cut his lip when shaving, such being the way of HD. He still has a beaming smile though!

Another announcement, another proclaim.

I turn up the volume, just more of the same?

This time it looks that the breakthrough is here,

And the media raves of a cure being near.

Drill down to the detail and whilst news is good,

There’s a lot to be noted; not misunderstood.

Patience is needed, much more to address,

But surge in engagement marks instant progress.

I glance at your casket, and give you a smile,

Too late for you, but it wasn’t your style.

You lived for the moment, you seized the day,

Looked up to the sunshine and kept making hay. 

15 Llandudno 1

Happy 7th Angelversary Sweetheart. xx

REGISTRATIONS & MISCOMMUNICATIONS

Today ( 25 November 2017) marks 29 years since Steve and I walked into a room in Wandsworth Registry Office in South West London. And after a short but beautiful ceremony we both signed a piece of paper. A piece of paper that officially bound us as husband and wife.

A wedding pic

Huntington’s disease (HD) was in that room that day in many shapes and forms. Not just in Steve’s father (seen in the background just behind us in the above photo), who was what I would call Middle Stage symptomatic. It was also in Steve waiting in the wings to make its appearance.

For a so-called ‘rare disease‘ I found out later, by way of the HDA Message Board , that The Registrar also had the faulty gene. I got talking to the daughter of The Registrar who mentioned her mother had worked at Wandsworth Registry Office around the time we wed. When we compared notes, she verified her mum’s signature was alongside ours on the Certificate! Was/is it also in Steve’s siblings who were present too? I hope not!

As usual by way of marking the day, I have come in to update the blog in memory of Steve and write a new poem.

My previous wedding anniversary blogs and poems can be seen here:

2011 AND THE WISDOM TO KNOW THE DIFFERENCE

2012 SELF INDULGENCE

2013 SILVER RINGS & SPARKLING THINGS

2014 DEDICATION NOT MEDICATION

2015 A WEALTH OF MENTAL HEALTH

2016  WARNING SIGNS & TUBE – TRAIN LINES

I mentioned in my blog of January 2017  that I had heard of the sad passing of one of Steve’s cousins. In September another of Steve’s cousins sadly died. He was only 44 and had also inherited the HD gene. It was his younger brother whom I had referred to in my January blog.

The funeral service was a fitting tribute for an avid fan of science fiction. From the Star Wars themed music and coffin (including a replica lightsaber placed on top complete with sound and strobing light) to the readings from books of favoured authors. This one I found particularly touching and uplifting:

“Everyone must leave something behind when he dies, my grandfather said. A child or a book or a painting or a house or a wall built or a pair of shoes made. Or a garden planted. Something your hand touched some way so your soul has somewhere to go when you die, and when people look at that tree or that flower you planted, you’re there.

It doesn’t matter what you do, he said, so long as you change something from the way it was before you touched it into something that’s like you after you take your hands away. The difference between the man who just cuts lawns and a real gardener is in the touching, he said. The lawn-cutter might just as well not have been there at all; the gardener will be there a lifetime.”
― Ray Bradbury, Fahrenheit 451

Very beautiful and well chosen words indeed.

 

Developments since my last blog in May 2017 – ON THE WINGS OF AN EAGLE & DOVE; CARRIES FAITH, HOPE, & LOVE include:

THE PAPAL BLESSING

The Papal Blessing appears to have been a great success. They streamed the event on the day and I was pleasantly surprised at how much time The Pope took when going into the Audience and walking among the rows and rows of those invited. For some reason I had assumed it would be like you see on the television where he stands up on the balcony and addresses the masses below. Instead, it was a much more involved and personalised event.  A short video giving highlights of the Event can be seen HERE.

As indicated in my last blog I was not intending to go to Rome for the Papal Blessing. However, I was thrilled to see a certain little dog (aka MiniSybil) was able to attend along with a fellow MiniSybil. They even made the BBC News! See HERE ‘Felt dog from Leeds has audience with Pope Francis’.

It was lovely to see a mention given in the article to the evolution of #SybilOnTour in part to my London Underground challenge. See my Video HERE. Donations are still welcome (hint hint).

When Jackie and I first discussed to potential of getting MiniSybils world-wide using the #SybilOnTour branding, I don’t think either of us realised her and her team’s creations would capture the world in such an amazing way!

See HERE for a map of places where people have homed/taken MiniSybils and HERE for some of the photos sent in (including Celebrities). If you have been lucky enough to home a MiniSybil, please do send in a snap to let us know how they are doing. Contact us on Twitter via @TDainton and @jaq421 .

Sadly, there is another passing I need to raise at this point. That of Sybil herself. Jackie’s little Border Terrier who was/is the inspiration behind the design of MiniSybil.

Sybil will be missed by Jackie and her family immensely but lives on through all the joy she has brought them personally; as well as the HD Community who adopted her as a kind of mascot. We shall all miss her hats and costumes and antics stealing the show sometimes in Jackie’s home videos such as ‘The Singing Corner’ sessions.

DUTY TO WARN & OTHER LEGAL CASES

Regular readers will know I have been tracking the case of ABC vs St Georges (Duty to Warn) and blogged about it HERE; HERE  and HERE.

Shortly after posting my last blog the decision was announced. The full transcript of the judgement can be read HERE. In essence, it was found that there are grounds for the case to go to trial.

the Claimant’s case is arguable. I would allow the appeal, quash the Order striking out the claim, and remit the case for trial.

The legal profession is obviously taking as close interest in this case and there have been a number of blogs appraising the implications. One such blog is The GenomeEthics blog which can be read HERE

Therefore, it seems that the Court of Appeal took account of the existing evidence of professional opinion in determining what might be in the public interest in the question of whether it would be just, fair and reasonable to impose a duty to disclose. This seems to be part and parcel of the right approach to determining public interests. However, are the views of patients and the public also relevant to determining what is in the public interest here? If so, what are those views? Maybe it’s time we asked.

I am unable to get details of a date set for trial as yet. Will there even be a trial?

If I put my HD Community hat on I really hope it does progress to trial as there are a lot of issues and grey areas that need to be clarified; not just for patients and their families but for the medical and the social-care profession as a whole.

If I put my other hats on; having been a HD Carer and someone previously in management within a governmental office, I have to say I would be surprised if the Claimant and the Trust did not settle out of court if they can. This being so as to avoid the unwanted publicity and costs (for both parties even if legal aid applies) and the ethical Pandora’s box for the NHS and social care sector.

We shall see how far it gets…

Another case made the News in September involving a HD patient. This one concerned the matter of end of life care. The news report can be read HERE ‘Court ruling not needed to withdraw care, judge says’   For more in-depth details, the transcript of the judgement can be read HERE.

I still consider myself eternally grateful that I was able to keep Steve at home, and that he was able to communicate his wishes to me even at the very end. I have very mixed feelings about the above court ruling. My heart goes out to the family and it is so sad that they were put in the position of needing to go to court. It can’t have been easy either for the Treating Team.

It is becoming clear that HD is being recognised for the complex disease that it is. The laws and guidelines need to go way beyond what is already available. No doubt HD is helping pave the way for a shake up in the legal and medical system which will impact on many other diseases and medical conditions as well. By forcing questions about whether the status quo is fit for purpose.

I couldn’t help but notice HD getting a mention in the latest Annual Report written by The Senior President of Tribunals. 

On the last page of the 114 page Report, under Annex E – Case Reports, a HD case is used to illustrate checklists and templates are useful but cannot be interpreted as rigid. Something, no doubt, that every tribunal panel would like to think they applied anyway. Sometimes it’s not that simple though…

Of course, the case is being used to demonstrate a way of thinking which goes beyond applying to HD patients only. However, it was encouraging to see a HD case cited as a way to get people thinking again. Being in effect the closing statement and the last word as it were, it made me smile to see recognition is being given to how HD patients do not fit into simplified thinking. Just seeing the words Huntington’s disease in black and white on such a document prepared for the judicial system is fantastic awareness!

The below is extracted from the Report:

 The patient was born in 1965. Like her mother and brother, she has Huntington’s disease. She was made subject to Guardianship under the Mental Health Act in 2013, and then the Court of Protection made a Standard Authorisation in 2015.

She lived in a specialist nursing home. The essence of the case was that Guardianship was no longer necessary in view of the Standard Authorisation. The Upper Tribunal found that the First-tier Tribunal had correctly recognised the importance of having the (Section 18) power to ensure that the patient returned to the nursing home if she left.

There would be practical difficulties in operating under the Mental Capacity Act 2005 to achieve this. Staff had to consider using their powers to ensure her return to the home without delay. The patient’s condition was also deteriorating and the tribunal properly referred to the crucial power under Guardianship to ensure treatment and provide access to the medical team. It was also submitted that the tribunal had failed to follow the guidance given in KD v A Borough Council and the Department of Health [2015] UKUT 0251 (AAC).Here Charles J had set out a lengthy checklist of matters to consider in cases such as this.

Judge Jacobs in the Upper Tribunal accepted that KD  was relevant, but said that it was important to recognise that the checklist was not legislation and should not be elevated to that status. As Charles J had himself said at paragraph 67 of KD, ‘it is likely to assist’. But the checklist must not be interpreted as a rigid template. Ultimately, every case is different and what matters is the substance of the tribunal’s reasoning rather than whether a tribunal’s reasons follow a particular format.

CAG COUNT

On the posthumous search for Steve’s medical notes/genetic data and his CAG Count I finally have the available records as requested back in January. The 40 working days service level agreement clearly too ambitious when the service was outsourced. I think I would have still been waiting had I not put in a strong complaint and got someone to take ownership of looking into things further.

Has getting the papers given me what I was looking for? One word, two letters, NO.

I have a plethora of letters and printouts of data on appointments; notes scribled by doctors; notes of my calling the Practice with queries; prescriptions; texts for Flu Jab reminders and copies of my letters to people (at least I now know they didn’t just throw them in the bin).

There are a number of references to ‘confirmed diagnosis’ but none that actually provide the CAG count. The nearest document is the letter sent by Sarah Tabrizi to our Doctor which can be seen below as redacted by me:

Tabrizi Letter

It is fair to point out, when requesting medical notes it is made clear the archives do not hold records which are the responsibility of individual hospitals to hold and maintain. By that token I was always aware I might need to directly approach the hospital where Steve’s blood was taken for testing and the Biomarkers Study. I was hoping that in the process of informing the doctor, more data would have been shared and the CAG reading included. Oh well…

The whole process of trying to get records has worn me down somewhat and I have decided to make the next step (approaching Professor Tabrizi’s hospital) something for my 2018 projects list. To be continued I dare say.

One thing I will be doing though before the end of this year is seeing my own doctor about my own health issues. I am having a forced change of medication but more about that in my next blog.

While there, I may ask my doctor to double check what they actually have on their records for me? I mention this in here as one of the things that struck me when looking through Steve’s records was the number of inaccuracies!

For example:
Steve’s main language being recorded as ‘Albanian’ for a while. I feel this is a mistake which is unacceptable in the case of someone with a proven HD diagnosis and increasing communication and cognitive difficulties.

Albanian

 

There is no way in a million years that I or Steve would have told them this. We are talking in 2006 when I needed to attend with him to register after moving again. Therefore it looks like probable human error when adding data to the patient database. Or perhaps worse, laziness where the in-putter couldn’t be bothered to scroll past the ‘A’s option as far as ‘E’ for ‘English’.

I dread to think of how frustrating things would have been for Steve had I not been with him during appointments and treatments. Imagine my not being there and his treating team assuming his comprehension of language and use of words, when his cognitive and physical powers were compromised, could be down to English not being his first language!

When we moved again a few months later to where we finally ended up, fortunately it looks like the error was corrected as we had to re-register again. This time the right data was taken/inserted.

Such a pity no one ever thought to ask us during those last three registrations how come Steve would have gone from speaking English to Albanian overnight and then back to English? Does this suggest every re-registration involves staff having to type in all the information from scratch in the 21st Century? Qesharak!

As for my pet-hate of the use of ‘Huntington’s Chorea’ as opposed to ‘Huntington’s disease’, I was very disappointed seeing the use of the old name so often. As the above picture illustrates, chorea heads the record (E: Huntington’s chorea). The date of Jan 2004 instead of 2005 is also wrong.

Sure, HD was suspected by me in 2004 but we didn’t see a doctor until Jan 2005 about it. Therefore, technically, there was no visual diagnosis or proven diagnosis in Jan 2004. I am glad we didn’t have any insurance companies to deal with that s all I can say…

We are not just talking receptionists; doctors; and others who may not have come across the disease often if at all before. On occasion we are talking a Consultant Neurologist and members of his Team. Specialists in neurological disorders whom I would have liked to have thought were more enlightened.

I wrote a poem in my book – Curse in Verse and Much More Worse – to illustrate my passion for correcting the name. The poem was kindly read to video by Carol Royle and can be seen HERE. At the end I show the wording on Steve’s 2011 death certificate which states ‘Huntington’s Chorea’.

That name was not taken from me I hasten to add. The Registrar was very sympathetic to my frustration (she had once lived next door to a HD patient) but explained she was bound by law to enter the same wording/name as had been used on the paperwork provided by the doctor who had issued the confirmation of death for their purposes.

I hope, by now, more people in neurology and the supporting teams have been made aware of the nature of HD not just being a movement disorder. The change of name having been in place now for many years.

MY OWN AWARENESS EFFORTS

There is not really a lot to report by way of my being proactive and taking on awareness ideas. However, I was thrilled to be approached by the Scottish Huntington’s Association (SHA) a few months back and asked if I would be willing to submit something for their blog writing initiative ‘Shout Huntington’s Aloud’.

Going back into a blog I was writing at the time of being a full-time carer to Steve, I submitted a few entries and was thrilled to be featured as the inaugural ‘Guest Blogger’. My entry can be seen HERE.

I hope to work more with the SHA on future writing projects, and hopefully with the HDA too at some stage.

Also, in the last few weeks, the HDA announced a Christmas Campaign. The initiative invites people to light a bauble or star on a virtual Christmas tree for a small donation.

A special personalised dedication can be written and is displayed on a ‘tour’ around the tree. It makes very poignant reading and is a great visual representation of just how much, and how far, HD touches generations of people.

After making my own donation and dedication to Steve, the HDA asked me to help them in their social media push by providing a few words and a picture they could use. I submitted some wording and four snaps for them to choose from. As at time of writing this blog you can see the Campaign details HERE and HERE. I’m glad they chose the snap of me and Steve together enjoying life. As much as Christmas can be a sad time it is a time to reflect on happy times too.

Before I close this blog with a new poem, I just thought I would share another spooky event.

I tend to draft my blogs well in advance and update and add stuff along the way before the time comes to post. Several weeks ago I put in the opening snap of Steve signing the wedding certificate expecting it to be the only photograph available.

I was sad that I never found the one of me signing which I was sure had been taken by the wedding photographer. For the wedding album itself we chose only one signing snap. However, I was convinced I had not imagined I’d seen at least a proof version of me signing as well.

Over the years, before Steve died especially with so many moves of home etc, I have lost lots of items and photographs. Over the years, since Steve died, I have asked so many family members and friends to search for any photos they have of Steve or both of us to the point of being a nuisance!

On November 12th I met up with my sister at a cemetery to take flowers to dad. Remembrance Sunday and also it is the weekend before the 32nd anniversary of his death on November 15th.

My sister handed me an envelope containing some wedding proofs which had somehow come detached from the set I still have. She found them when looking for something else. She had been surprised to find them having thought she had given me everything by now, and I was convinced I had looked through everything when at her place over the six/nearly seven years since Steve passed!

You have probably guessed by now what was in amongst them. Yes, the snap I had been pining for even though only in my own mind as my sister was not aware I had been looking for it all these years. Or in particular for this blog entry where I was so sad I thought it was lost forever.

Make of that what you will but I’d like to think it was a posthumous anniversary present from Steve.

The photo is inserted after my poem. Thank you Sweetheart!

 ‘Everyone must leave something behind’ but as I look around,

No flowering plants; no works of craft; no hand-made items found.

I guess that as the years went by, where HD came to stay;

Items culled through every move meant loss along the way.

 

For one so gifted with your hands it’s sad there’s nothing left,

To show how you had made your mark. A home now so bereft.

 

But take another look around; with every single view,

The home is filled with items kept or here because of you.

The photos on the wall you took, or taken when together,

Prove that you existed then and will exist forever.

 

As for touching something else to help ‘your soul’ live through…

You touched my heart; my mind; my soul. I’m me because of you!

P288

ON THE WINGS OF AN EAGLE & DOVE; CARRIES FAITH, HOPE, & LOVE.

Tomorrow (May 14th 2017) marks Steve’s 56th birthday. That said, the birthdays after his 49th in 2010 have been in a different form of carbon and aura. As opposed to the flesh and blood (albeit blood with a dodgy chromosome), and sparkly eyed fabulously cheeky laugh format that is…

I haven’t yet been able to manage getting to his party in Heaven. We sang No one but You ( Only the good die young ) at Steve’s funeral rather than have a hymn. Based on that criterion, I guess I shall be around a lot longer. Therefore I still need to do a virtual celebration of Steve’s life and awesomeness right here on Planet Earth.

My previous entries to mark Steve’s birthdays since 2010 can be seen by clicking on the links below:

May 2011 – I MAY REGRET THIS…

May 2012 – TOASTING & BOASTING

May 2013 – ONE DOSE OF TWEETMENT OR TWO?

May 2014 – THE SHOW MUST GO ON

May 2015 – THE FAIRNESS OF AWARENESS

May 2016 – POETRY IN EMOTION

Huntington’s disease (HD) Awareness Week starts in earnest Monday May 15th. I toyed with the idea of travelling to Rome to take part in an amazing global HD awareness opportunity. His Holiness The Pope, no less, is giving a ‘Special audience’ with members of the HD Community and a public address/blessing.

More details of the event, which is being held on Thursday May 18th and known as HDennomore, can be seen HERE.  One of the driving forces behind HDennomore has been the wonderful Charles Sabine who I had the pleasure of meeting in 2015. I blogged about our meeting at a film event HERE.

I say ‘toyed with the idea’. I have my shiny new passport as outlined in my previous blog but didn’t know about the event when I got it. Part of me was thinking maybe it was more than a coincidence? I also mentioned in that blog though that I have no intention of ever travelling again without Steve. Even Pope Francis can’t make up for Steve not being there by my side on such an occasion.

I visited Rome with Steve in 2004. Among the guided tours we took during our holiday was a trip to The Vatican.  We had a really lovely holiday in Rome and it was good to get another of our Bucket List wishes ticked off. I couldn’t go back without Steve.

We both took our cameras and, as usual, Steve managed to take the best pictures even being HD symptomatic . There is a particularly special picture that Steve took at The Vatican. Everyone else is looking around at the architecture to take pictures. Steve has managed to not only capture the architecture but what looks like a single dove flying above the Square. Priceless!80 Rome

I am not a religious person. I am certainly not expecting anyone blessed by The Pope to be instantly cured, if ever at all. It is, however, a fantastic way to get media attention for the disease and plight of those affected by it in whatever capacity.

There is a focus for the Event on families from South America. This is a region of the world known only too well by The Pope. They are among those who have the worst of the worst when it comes to help and healthcare. When we consider HD would be nowhere near as far down the line for treatment and cures had the families of Lake Maracaibo not allowed Nancy Wexler and her Team to find the HD gene it is only fair they be recognised for their role in the HD story. See HERE for more about the story.

What about my own meagre efforts? Since Steve’s last birthday blog I have not really done much by way of raising awareness myself unless you count:

Taking #SybilOnTour around every London Underground station and making a video slideshow of it. Click HERE to see the video and read more about the adventure in my blog – WARNING SIGNS & TUBE-TRAIN LINES.

And

Taking #SybilOnTour to The London Pantomime Horse Race (LPHR). The best way to describe LPHR is a crazy afternoon of eccentric people dressing up in panto horse costume as an excuse to do a pub crawl around Greenwich. The Race is done for charity and there’s a little video giving the flavour of LPHR HERE.

I have to stress neither Sybil or I actually competed, we were just spectators, but we did manage to get in a photo op for Sybil with the lovely Caroline Harbord CH and Sybil

Caroline sings with the Lewisham and Greenwich Choir, AKA The NHS Choir.  They were performing at LPHR and you may remember them as the act that pipped Justin Bieber to the UK Christmas Number 1 spot in 2015!

One of the other performers, who did a song with The NHS Choir, was a guy called Dr Milad Shadrooh. He is also known as The Singing Dentist. They did a brilliant parody of Pharrell Williams’ song Happy. Their version is appropriately called Gappy. See the video HERE.

Being me, I couldn’t resist having a go at writing a parody set of lyrics myself based on a dental theme. I re-wrote Enya’s Orinoco Flow and made it into Scale Away. My take on it can be seen/heard HERE. Apologies for the awful voice but in the absence of having a proper choir, or professional artist helping out, I am afraid it is just my squeals. Ideas for a Huntington’s disease Choir anybody?

As for developments since my last blog

I had hoped to be able to give an update in here on my search for Steve’s CAG count ; and also report back the outcome of the Appeal under the  Duty to Warn court case. As I post this blog entry on May 13th the position is as follows:

Regarding Duty to Warn/Duty of Care ( ABC v St Georges Healthcare NHS Trust and Others ) there is little to report. I did manage to get to the Royal Courts of Justice for a few hours on the 2nd day of the hearing. I was only there for one morning but I was glad I showed my face. I may be wrong but I did not see anyone from the HDA present which surprised me. I was able to offer my thanks to the Claimant for pursuing the matter as it was obviously not an easy thing to do. She seemed very touched and grateful that others cared.

From the brief time that I was there, it was very clear to me that such a complex case could not be decided simply on the basis of the information and ‘ trial bundles‘ that were being presented for consideration. There also, clearly, needed to be much more time than the 7.5 hours listed to do justice to the implications of what could be such a landmark case. In a Guest Blog on the GenomeEthics website, Dr Vicky Chico has blogged about the matter and sums up some of the issues arising. Read her blog post HERE.

As at time of posting this blog entry, the Case is still shown on  Case Tracker as ‘waiting result of a reserved judgment’. In a nutshell, this means the decision is being held back while more evidence and opinions from others is being taken before an informed judgement can be made.

Personally, I think that status is reassuring. It seems to afford the Claimant and the subject matter more respect where it is so complex. There is still so little known about HD, including the ramifications of genetic information being made available or withheld for whatever reason or whatever hereditary disease. That became evident from the questions being asked by the judges who were seeking to clarify the weight of the arguments.

On the posthumous search for Steve’s medical notes/genetic data and his CAG Count…

I posted off my application for access to Steve’s medical records in January. The cheque I enclosed for the service was cashed by Capita on February 13th. Having sent a number of e-mails and getting no replies at all, and having made a number of calls, I was told recently that they are apparently at ‘Stage 2′ in the process. The call centre I need to deal with don’t actually know what Stage 2 even means but assure me something is happening and I will get papers “soon”.

At one stage they denied receiving my application, only to back-track when I pointed out they must have had it where they cashed the cheque in February! At that point they admitted they had lost track of it in the system!

Fortunately I am in a much less stressed state of being than I was when as a carer. It’s not like I need the details as a matter of urgency but that is not the point. It has brought back to mind and heart the feeling of utter frustration and helplessness arising from other peoples’ perceived incompetence along with lack of caring about the customer. I did a bit of searching on Capita. It does not surprise me they are getting bad press from handling the NHS Medical Records contract.

There were times when looking after Steve that I was coping with things where I had, in effect, control of the situation. When external control was making life harder for us, for example medical receptionists messing up appointments; the hospital transport system sending drivers to the wrong place and our losing appointments we had been waiting six long months for; staff being on leave and not sorting out cover properly meaning we would be short of medical supplies and services etc… Those were the times I just wanted to throw the towel in! Those were the times I would end up losing it! Those were the times I would feel helpless and hopeless and they obviously impacted on Steve.

It also brings back to me how lonely it felt being a carer to someone at late stage HD. Communication was still there in many ways but not at the level where Steve and I could engage in a conversation about things beyond my control. This was to the point where he could not see that I had done all I possibly could to help him/us and it was others who were to blame, not me. He relied on me and I would feel a complete failure more than a victim of other people not doing their bit properly. As a self-confessed control freak, such times could mentally tip me over the edge!

I use the word ‘incompetence’ above. It is a very strong word and I do always need to bear in mind that the people providing the services are often at the mercy of the ever changing computer systems they work with. Too many changes or too few changes? Even as I post this blog the NHS is in chaos where it has been under attack from a cyber threat. Thousands of people are impacted. It appears when the computers go down, the NHS cannot do even a simple task of taking appointments or handling routine operations.

Those computer systems are often not fit-for-purpose where no one has properly taken time to talk with/test with the people who actually need to use them – the End User. Even more unlikely is consultation with the Ultimate End User (the customer/patient/carer). They are the ones most impacted when the systems and people using them do not deliver the level of service which is needed. Will it ever change? Sadly I think things will get worse and worse to the point where it all implodes.

When we think of the human brain being the computer of our own bodies, it only takes a dodgy bit of programming and wiring as it were, and it is no wonder the mind and body can feel like giving in. In my book CURSE IN VERSE AND MUCH MORE WORSE I wrote a poem called The Corrupted Computer. The actor Mark Moraghan kindly did a reading for me which can be seen HERE.

I described my feelings of helplessness above when being frustrated by things beyond my control. My own frustrations and limitations were minuscule compared to what Steve  was having to cope with.

Most of the poems in my book were written before Steve died. I am grateful I was able to use writing to record that I recognised how much harder things must have been for Steve than for me. This was even before I had time to reflect on things after Steve’s death which can put a whole new slant on things. It helps me better come to terms with my wife/friend/carer/advocate role whilst he was still alive, and when it really mattered.

So…What am I doing this year on Steve’s birthday?

I am staying at home as ever now but I am sure we will both be emotionally exhausted by the end of the day. That is, unless Steve can have a word with God and The Pope to ensure Crystal Palace get the breaks they deserve. I previously blogged about Steve’s love of Palace in my blog of August 2013 – PLAYING FOR LAUGHS. So proud that Palace had been promoted but so sad too that Steve had not lived to see them go up.

Palace (aka The EAGLES) are on telly and are playing Hull City (aka The TIGERS) in what could prove to be the most crucial match of the entire Season! Some call it a ‘six pointer’ but it’s much more important than that. If Palace do not win, or at least draw and get a point, they may still be relegated. Hull are their nearest rivals with only four points between them. With just this match, and one more left which happens to be away to Manchester United, it is crucial they don’t fall at the last hurdle!

In Roman terms, their Captain – Jason Puncheon – represents the Aquilifer. Leading the Team/Army and the legendary South London Army of fans into a fight for survival .  Whilst Jason may not actually have an eagle standard to hold on to (and sadly he could do with a set of armour and helmet too given Wardy was given a broken nose last time out) he does have the blessing of a real live eagle! The beautiful Kayla who is the Team Mascot. The Referee will be Martin Atkinson. Just like the Emperor in Rome, at the gesture of a hand the Ref can condemn a Team in an instant. It doesn’t matter how well the Players play their fate is in his hands (and that of his optician)!

Then again…. If Palace do get relegated it will be the start of just another chapter of being a CPFC fan. I marvel at just how much Stress Steve was subjected to. The highs are euphoric and the lows are unbearable at times. Something I did not fully appreciate until now. The goals will be fought for in whatever Division played in, and they will all go towards helping the HDA in Steve’s memory via our fundraising page.

At the beginning of this blog I mentioned a Queen song was played at Steve’s funeral. There was always going to be at least one Queen song to remember him by. However, there was meant to be a Monty Python song playing for The Committal and our leaving the Chapel. Steve wanted Always look on the bright side of life. I bottled it when it came to requesting the music and asked for Pink Floyd’s Echoes instead.

Steve had a wonderful sense of humour. Coupled with his love of the film Life of Brian it was one of those songs we joked would be cool to have at our funerals. Having a sense of humour was paramount to stopping HD destroy him before he would become symptomatic, and to a greater degree for the years after it emerged.

What have the Romans ever done for us? They gave me and Steve a fabulous holiday and we loved seeing the ancient ruins of a great civilisation. I hope those who get to travel to Rome for the May 18th Event find it as special as we did. And that the day marks a historical shift in media attention to help HD emerge out of the shadows and be Hidden No More.

I am going to end with and a photo of Steve from our holiday and a poem for Steve. The photo was taken on August 17th 2004 at Ostia Antica.  It was a very hot day. There was a lot of walking, not all of it on level ground, and we were being guided by a tour guide who had a heap to pack in during such a short time. I was flagging but Steve still managed to keep a smile on his lovely face.

Although not formally diagnosed until 2005, in 2004 it was clear to everyone that Steve was demonstrating the early signs of HD. Whether Steve is counted in on ‘everyone’ is debatable but he was beginning to get a gait which made walking harder and was dropping weight like a stone.

His patience; tolerance; stamina; tenacity; and utter determination not to be seen as someone with a health issue is extraordinary! HD was about to feed him to the lions and tigers. Having seen other family members fight for their lives in the  HD arena, and none of them survive, he was as brave as any Roman Gladiator!

The photo is also very poignant to me as it was taken exactly 17 years to the day that Steve and I had been to a friend’s birthday drink. He flirted with me to the point that we started dating. And the rest, as they say, is history… Although, as long as I keep Steve’s memory alive he will never be ancient history.

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Telly on, the match begins. A lot depends upon who wins.

Another Season nearing end; another goal-mouth to defend.

I get excited; hope we score, I wasn’t like this once before.

I’d be at home with things to do, content you had your own life too.

 

 

Years ago you would have gone; with fellow fans you’d sing along.

Come back later, scarf in hand, I didn’t really understand.

I’d smile, commiserate, pass beer, serve dinner; later disappear.

While sat at TV you would stay, and watch again ‘Match Of The Day’.

 

 

The next day you’d devour the news, and read up on the pundit’s views.

On holiday we’d have to find, a paper though one day behind.

Your passion for the game came through; it was indeed a part of you.

I’m glad I wasn’t one to moan, a football widow on my own.

 

 

Supporting you; your sheer frustration. Times you faced a relegation.

Times of joy when going up, so close to raising FA Cup!

Then later on with HD growing, things got too hard to keep on going.

You stayed at home and watched TV, with only me for company.

 

 

Come Saturday when footy came, we’d always strive to catch the game.

Whatever outcome, lose, win draw; you loved to cheer your Team once more.

Your Birthday this year marks a day, when so much rests on how they play.

I’ll sit and watch with glass in hand. I get it now, I understand.