Author Archives: trishdainton

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.

Picture 013

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.

 

PHOTOGRAPHIC MEMORIES & BLIND FAITH.

Today (27th January 2017) marks six years since Steve took the opportunity to beat Huntington’s disease (HD) before giving it a chance to beat him/us.

Each year, to mark the day of Steve’s Angelversary, I like to come in post up an entry to remember Steve and reflect upon life as a HD widow. My previous Angelversary entries can be seen through the links below:

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?  

Like many people, I like to think of a new year as an opportunity to consolidate things from past years and plan new things. For 2017, I thought I would try to get back into some of the little projects I have been thinking of doing but not got very far with. For example, trying to get hold of Steve’s CAG count to see if that had any relationship to Steve dying relatively young at 49. More details on what a CAG count is can be read HERE.

When Steve was tested in 2005 we were not given anything with a test result stated on it as such. We were simply told it was a ‘positive’ result. In HD terms, 49 is not unusually young. However, most of Steve’s HD affected relatives seem to have died at a much later stage in life. That said, I have just heard of a cousin who died at the end of last year. The cousin was only 40.

I did actually start looking into how to get access to Steve’s records in July last year and spoke to our GP Practice. They gave me a website to go to for guidance and an application form. See HERE. I came across a stumbling block though when it came to sending proof of my identity. My passport had expired; I have no driving license (I gave up after failing the test three times); and getting endorsement of photos can be such a pain where the rules on who can endorse, and who cannot endorse, are so restrictive.

With the New Year, I decided to say s#d the expense and the hassle. Even though I have no plans to ever travel again without Steve I might as well simply apply for a passport renewal. I had originally been thinking it would be cool to be an owner of a post-Brexit passport where my old one expired in May 2016. I have since given up waiting for the Powers That Be to get their acts together. Waiting two years is one thing, waiting for the calming of civil unrest and scaremongering about break up of the UK/a new Hadrian’s Wall is quite another.

A few days back I went on-line to see how I go about applying for a renewal. I was pleasantly surprised to find that the whole process can be done via the Gov.UK.  website. With the advent of digital photos I was able to up-load my mug shot and not spend loads of money and several hours in one of those photo booths trying to get an acceptable photo. I’m not just being vain here. I have dodgy eyes (more details below). In the past I have paid for someone to take my photo in one of those places who offer passport services and still had it rejected when I went to the passport checking services at the Post Office!

Sure enough, even after selecting my photo after my having discarded lots of trial ones, the System didn’t like my up-load. At least with the on-line application method it allowed me to supply notes on why I felt I would never be able to provide a photo of a better quality for their purposes. Once submitted, I was informed an actual human being would be involved in checking. No more “Computer says NO”. A human would check my likeness against my old passport and take into account whether or not I had medical reasons for not looking like bright eyed homo sapiens should look.

I had worked on the basis we would probably be talking three months rather than the average three weeks stated on site. For once, the UK digital age has surpassed my expectations! I am now the owner of a new ten year passport which arrived Saturday (21st January). Saturday 14th I did the photo in the comfort of my own home with the aid of a self-timer on my digital camera and having  magnolia walls which are allowed for the plain light background. I watch a lot of those home improvement programmes but cannot bear to change the place since Steve and me moved in to the ‘New Build’ ten years ago.

Monday 16th I sent my old passport by secure service to be checked and cancelled. That arrived back by secure (signed for) mail on Friday 20th. Saturday 21st my shiny new passport arrived by secure mail. One side of me thinks efficiency at its best, another part of me worries why such an important document does not need more time for scrutiny and other administration? No pleasing some people I suppose 😦

Now to get cracking on trying to get Steve’s CAG count. Watch this space as they say…

I mentioned above I have what I call dodgy eyes. As a child at around age six I had an operation for a ‘lazy eye’ or ‘squint’ as it was called in my day. It’s now known as ‘Astigmatism‘.  Steve had a squint as a child too but his operation went much better than mine, although there were still subtle signs when he became tired bless him.

Apart from the operation not being fully successful (yep I had the patch and the glasses for several years) my eye problems were further compounded when I had brain surgery a few years later for a neavus/Neurocutaneous Melanocytosis (NCM) on my brain. I was about 12 at the time. The brain op was said to have further compounded my scoliosis  and muscle weakness. Just call me unlucky.

I got on with life, as you do, and didn’t think much more about my eyes until one day back in 1995 on a  shopping trip with Steve to Lakeside Shopping Centre.  We ventured into the shiny new Boots Opticians, where they had a special promotion on offering comprehensive eye checks with new state-of-the-art equipment. I thought it would be worth a go and they saw me there and then.

The results were staggering! The comprehensive Field Test highlighted I had a complete loss of vision in  parts of both eyes (top right quadrant in my right eye and top left quadrant in my left eye) which restricts my peripheral view by about a quarter in each eye. Further investigations with access to my childhood medical records showed this was picked up on after my brain operation but I had never been told about it.

I assume my parents may have known but they certainly never told me there was a good reason why I couldn’t see as much as others. Not that I was aware of the blind spots as it was just taken for granted I was seeing what others see. With hindsight though, it made sense of why I never did pass my driving test as I really could not see the parked cars properly lol. I have also been told that, now I am aware of the visual problems, getting insurance would be at a ridiculous premium if I ever did learn to drive!

More problems have been discovered with my eyes since that fateful day in 1995.  I have since been diagnosed with Narrow Angle Glaucoma. As a result I had the Iridotomy treatment on both eyes (holes lasered into my eyes). The procedure was “only 75% successful” and at my last check up on 19th January this year it appears my corneas are thickening and the pressure rate is reaching the danger threshold, whereby I may need to use special  eye drops in the future. When I go back in July they hope to have a better idea of whether I will need further treatment and/or procedures to stabilise pressure and stop possible vision loss.

Going back to the passport photo issues, apart from a squint and having limited peripheral vision with pupils that don’t dilate properly, I have been told that I have very small eyeballs!  Both eyes staring straight ahead to pose for a perfect facial picture with central pupils; clear iris and a decent amount of the white of the eye just ain’t gonna happen!

Another thing on my list for 2017 is to get my butt into gear regarding being better at doing my daily physiotherapy exercises to strengthen my foot and aid my poor balance. Last year I was attending physiotherapy at Queen Elizabeth Hospital to help my unstable right ankle and, in turn, my right leg and my back. Without the intense therapy there was no way I could have completed my #SybilOnTour Tube Challenge so my Osteoporosis Specialist referring me for therapy was really timely.

Yep, I have bone and muscle issues on top of everything else. Once again I cry “Just call me unlucky!” Actually, the Physiotherapist suggested I look into asking my GP and other family members about the possibility of having Charcot-Marie-Tooth  The GP said she doubted it would apply and my sister said she didn’t know of any relatives with symptoms so we have put it on the back-burner. I’m banking on cancer getting me first anyway as that seems to be the predominant choice of hereditary disease in my family.

I mentioned #SybilOnTour Tube Challenge above. As an update from my last blog post  Warning Signs & Tube Train Lines I have so far managed to raise £400 from that fundraiser. That’s a good amount but not quite the £1,000 I was aiming at so if anyone has any spare change all donations are still welcome HERE.

Also, another subject covered in my last blog post was the business of ‘Duty to Warn’. Tapping into the knowledge of a colleague I was able to find where on-line I could find the listing for the next hearing at the Royal Courts of Justice. It will be Tuesday 28th March – Case B3/2015/1816.

Members of the public can attend courts at the Royal Courts of Justice unless the Room is marked as ‘In Private’ or ‘In Camera’.  I may try to go along just to satisfy my own interest (a bit of a busmans’ holiday lol) but I dare say the media will be following up anyway if there is anything of note to report where it could be a landmark legal ruling.

In this blog I have described above a lot of things wrong with me. Some were from my childhood and clearly evident from the moment Steve met me. Some discoveries were shared with Steve along the way. Finding out about ocular problems on a shopping trip in 1995 and finding out around 2002 that I have osteoporosis which could not have been easy for Steve to hear.

When Steve told me he had a father with HD there was no guarantee he would have inherited it. My intuition told me it was likely to be ‘positive’, but he could easily have been ‘negative’. Fifty percent chance of Steve needing me in later years; one hundred percent chance of me needing him to look after me if we lived long enough. Add to that all my personality faults and frailties, even before I took up the role as a carer and all that entails,

HD did affect Steve’s personality but there was always an underlying retention of his sweetness and kindness and tolerance. Whereas me… Cut me like a stick of rock and I have the word ‘Bitch’ running through me. God knows, I even branded myself for my 40th Birthday – see HERE. Like I say in that video ‘Steve was a Saint to put up with me!’.

Steve was my rock and protector and even carer well before I needed to be his. He chose to take me on despite my physical and emotional issues and when we married I was the one most likely to be in a wheelchair as time went on, not him. Despite that, he still wanted to be with me.

Six years on from watching Steve take his last breath, I still marvel at how utterly lovely he was/is as a human being and how lucky I was to have met him and be with him, in whatever form of earthly carbon or heavenly aura he may be. Just call me incredibly LUCKY!

I have inserted below a new poem for Steve and a photo of us taken in 1998 on a cruise. Steve is looking confidently forward at the camera but, as usual, I am trying to veer away from looking straight at the camera. This would annoy professional photographers no end I can tell you. I do love the photo but many of my favourite snaps of myself were taken by Steve. I have also inserted a snap Steve took in 2007 when he was well into being HD symptomatic. I still think he would handle a camera as well as any professional and know how bring out the best in me!

 

Long before I took on HD,
My darling Steve, you took on me.
Long before you needed my care,
My darling Steve, for me you were there.

 

Long before the problems came,
My darling Steve, you put me to shame.
Long before your illness came through,
My darling Steve, I felt safe with you.

 

Long before you needed my hand,
My darling Steve, you helped me to stand.
Long before I needed to cope,
My darling Steve, you gave me such hope.

 

It’s now long after, I hope that you found,
I was able to help when your turn came around?
And despite my progression, and what lies in store,
My darling Steve, you will help me I’m sure.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

WARNING SIGNS & TUBE-TRAIN LINES.

Today (25 November 2016) would have been mine and Steve’s 28th Wedding Anniversary. Another opportunity to blog in Steve’s memory. Not that I need an excuse that is…

As always, it provides an opportunity to give an update on what has been occurring in my life since my last blog ‘Poetry in Emotion’. And also to give an outline of mine and others’ efforts to raise Huntington’s disease (HD) awareness.

My previous Wedding Anniversary blogs can be seen here:

November 2011 – And the wisdom to know the difference…

November 2012 – Self indulgence

November  2013 – SILVER RINGS & SPARKLING THINGS

November  2014 – DEDICATION NOT MEDICATION

November 2015 – A Wealth of Mental Health

In my last Anniversary blog ‘A Wealth of Mental Health’ I talked about my new job as a Mental Health Tribunal Clerk/Assistant. I am pleased to say, as at the time of posting at least, I am still in the same job.

I haven’t yet come across any cases of people formally diagnosed with Huntington’s although I have to say I do sadly wonder at times. Not that I could do anything about it if I did have very strong suspicions of HD being present. Apart from the patient confidentiality angles being paramount here, I am always mindful of how knowledge (confirmed or otherwise) can be a dangerous thing when it comes to genetics.

Duty to warn

To illustrate my point, in Spring 2017 there will be a landmark Court of Appeal Hearing regarding the subject of ‘Duty to Warn’. The case relates to a woman who learnt of her father’s HD status as a result of his being discharged from a psychiatric unit.

The outcome of a Mental Health Tribunal was that the Patient be discharged back into the community where HD had been diagnosed. The Patient’s daughter was told of the diagnosis ‘accidentally by her father’s GP’. It is a very complicated story that leads to the Court Case and its Appeal Hearing. I first heard about the story back in mid 2015 in a blog article which can be read HERE.

Incidentally, with the wife not being alive (the man actually shot his wife if my internet searching serves me well) and where I believe the daughter in the programme was the  eldest daughter, I think she would have been classed as the man’s nearest relative. To that end, she would surely have been given an opportunity to provide collateral input into the Hearing in some way? I can only assume there was a non-disclosure element if HD was cited  at any point.

Fast-Forward to August 2016 and the story picks up in a BBC Radio 4 show presented by Joan Bakewell as part of her series ‘Inside the Ethics Committee‘. The full show can be heard HERE. In the Programme, a Panel of people look at the dilemmas posed from many different angles. They not only cover HD, they also cover a disease called Lynch Syndrome.

There is a big difference between being forewarned with genetic information in the case of HD and Lynch Syndrome and it is explored in the programme. The main difference being that early detection of a potential hereditary pattern could lead to early screening. Early screening could lead to early treatment. Early treatment could lead to saving lives. The life saving motivation for HD does not exist yet in terms of early detection leading to a more positive outcome.

Ethical dilemmas aside, it was good to get mainstream media attention for HD and get people thinking and talking about how there can be so many ramifications having HD is in the family.

Work Capability /Employment Suitability Assessments

On the back of Department of Work and Pensions (DWP) legislation changing the claiming of benefits, in January 2013 I felt compelled to set up a Government  Electronic Petition (E-Petition) hoping to have HD cited as a condition to merit special consideration.

The actual E-Petition can be seen HERE and I blogged about my efforts in my posts Recognition is the name; E-Petition is the game and INSPIRATION NOT FRUSTRATION. The poem in the latter blog post was one of my poems so beautifully read out by Carol Royle. See HERE for her reading of My Inspiration.

I got a perfectly respectable 4,000 signatures, and a lot of awareness on the back of the social media plugging of the petition. However, in terms of getting enough signatures to force a debate in the House of Commons or make the DWP sit up and take notice of HD it wasn’t the most productive use of my year I suspect.

Whilst in no way connected to my own personal efforts, there was at least some good news this year that DWP are re-thinking their policy of treating claimants with long term conditions where there is no realistic chance of improvement over time.

In October, the BBC reported HD was to be one of the conditions being looked at more sympathetically when it comes to Employment Suitability Assessment (ESA). It has been recognised it may be unreasonable to put someone through the stress of  re-assessments, when there is no likelihood of being able to re-enter the workforce, once the condition begins to affect the person in earnest. The BBC article can be seen HERE.

It is not lost on me that the changes do not take immediate effect, and that when the details are drilled down into further there  is the small matter of interpretation of the word ‘severe’ which needs to be defined better as it’s not an automatic decision based on a diagnosis. However, it is a start and a victory for common-sense!

I really hope the Huntington’s Disease Association are working closely with the DWP and Health Departments to educate people on the more discrete issues (for that read Mental Health as well as more subtle physical symptoms) that come with HD. And how those symptoms can impact on families already struggling to cope behind closed doors. The self-denial and stigma surrounding the hereditary nature of the disease; often resulting in a lack of important information being openly shared by the family within themselves and with others.

Writing out of the HD Shadow

Earlier this year, The Scottish Huntington’s Association (SHA) launched a flash fiction writing competition under the heading ‘Writing out of the HD Shadow‘.

My entry can be seen below:

“You take after your father you clumsy oik” she joked as Bill dropped his spoon. Custard sprayed itself over the laminate.
“That’s because you take after your mother. Nan’s custard’s lumpy too. One way of getting out of eating” Bill quipped back.
“Where is dad by the way?”
“He said he would be late today, some meeting to attend”. Mum replied.
Bill played with his food a while. Then broached the subject.
“Mum… Is dad alright?”
“In what way Bill?”
“He seems quiet… seems down.” Bill replied.
The front door opened, slicing through the awkward silence.
They waited longer than comfortable for dad to come into the lounge.
He’d gone straight to the bedroom.
Mum found him sitting in silence. Piece of paper in hand.
He’d lied about a meeting to attend the Clinic.
He held out the piece of paper.
“Please God… Don’t let my son take after me”

The wining entries were announced at an event in Glasgow on 7 November. Whilst I was not one of the winners, I was thrilled to hear my piece was one of the 20 short-listed entries put forward for judging by Michael Malone and Alan Bissett.

So near yet so far. Still chuffed to bits though to have made it to the short-list!

#SybilOnTour et brooch d’amour

Over the Summer I embarked upon a totally random awareness and fundraising campaign. Jackie Harrison, who is one of my HD community friends, has been making little felt toy dogs in the image of her own dog – Sybil the Border Terrier. More information about Jackie and her HD connection can be read on an article she did for CarersUK. See the full article HERE.

In a nutshell, I visited every one of the Stations on The London Underground map and took a photo of ‘Sybil’ against a Roundel or other proof of location and put the photos together in a little video. The video can be seen HERE.

As at the time of posting this blog, £268 has been donated. If any readers have a spare £3 (less than the cost of a pint) I would be eternally grateful if you could consider making a donation or share the video more widely. Every little helps as they say…

Along the way there were the emotional moments when visiting Stations and areas that reminded me of Steve and our life together. One such place was Oxford Circus where Steve had worked at Burtons Group HQ (now Arcadia) in their Import Department when we  were courting. I would meet him from work and we would go to the The Argyll Arms (still there) or The Dog and Trumpet Pub on Carnaby Street which has now sadly been taken over by the O’Neill’s Chain.

One of the first presents Steve bought me was a real leather jacket from a shop in Carnaby Street. Given Steve worked in one of the UK’s largest clothing companies, and had a generous staff discount, some would say he was daft to splash his cash in a small independent shop but it was one of those spontaneous gesture moments bless him. I loved that jacket and wore it on a weekend trip to Paris a few weeks later in April 1988.

We booked the trip to exchange engagement rings. I had proposed to Steve on Feb 29th as a bit of a joke/bet with a friend and didn’t have a ring where I wasn’t really expecting him to say “yes”. We had only been going out for a few months after all, and being Leap Year Day it was an opportunity to have a laugh more than be taken seriously by Steve.

It hadn’t been that long ago, relatively speaking, that I had got out of a very long term relationship and engagement to another man. I just couldn’t bring myself to marry the guy even though we had gone as far as buying the wedding rings along the way and had lived together for a while.

In case you were wondering, I didn’t propose to the other guy. He proposed to me very early on in 1980 but it took a while for me to say “yes”. I then dragged out making the actual arrangements. I suppose I never really felt comfortable committing to the guy if I’m honest. With Steve though, it was different. If he would be brave enough to take me on that is…

The three photos below where taken by Steve on that weekend Paris trip wearing said jacket. Fun; romantic; happy and carefree. Our honeymoon, seven months later, was a weekend in Bournemouth. Long story but we had only come back from two weeks in Rhodes a few weeks before and were not able to take much time off work. Not quite as romantic a destination but still a wonderful honeymoon trip with a wonderful man!

This slideshow requires JavaScript.

The next set of photos are from a a day trip to Hampton Court and our first holiday in Jersey (photos 2 &3).  I still have the brooch seen on the jacket lapel. I hope people agree that Steve rocked a leather jacket far more than I ever could!

The little brooch is a white Persian cat painted on enamel. Steve bought it for me when I admired it as we walked along the Seine in Paris on our engagement trip. There was a little stall with many lovely things. Steve knew how much I adored cats and felt I just had to have it.

This slideshow requires JavaScript.

Going back to my Underground Challenge, there were also the moments of serendipity which kind of told me Steve was comfortable with my wacky adventure.

For example, I had planned to take on The Jubilee Line one day and was forced to change route when there were train issues. Not a problem as I could get off the train I was on and change to cover The Bakerloo Line instead so as not to have wasted my whole day. On the platform at Lambeth North Station on the Bakerloo Line  I heard an announcement that in the next few days Lambeth North was due to close for several months for “Lift maintenance”.

As much as I had done my homework to project plan the most time effective order of tackling the Lines, I had missed seeing that Lambeth North was going to be closed for several months. To that end, I could not have completed the Challenge had I not got the snap on the day that I did given it was my last opportunity to visit it where needing to organise myself around work days!

Another moment of serendipity came when I was trying to pull the video together. I am not very clever when it comes to doing anything more than the basics in Windows MovieMaker. So when it came to working out how to get my narration recorded and under the slideshow I was a bit stuck as to how I could do it. I was finding problems left, right and centre where the format was not compatible with the programme I was using.

Believe it or not, I am actually nervous of using IT. I am so nervous of IT I don’t use my SmartPhone lest I get frustrated with the thing and throw it! I go so far as to subscribe to the BT Tech Experts Package.  With the problem getting frustrating I called the Team toask for help in downloading the right free software. The service has a remote user facility that allows the Operative to do the work while the Customer watches on in awe (or at least I do).

The Operative I got straight through to not only helped by remotely finding and downloading the right software, he talked me through how to record and save recorded media to my video.Whilst I am used to having very good support, I was amazed at the level of detail and tutorial he went into to make it so much easier. At the end of the tutorial, he mentioned I best not add the detailed level to which he had gone to when giving feedback if prompted. He shouldn’t really have spent so much time on helping me.

It just so happened that he had a hobby doing a similar thing to what I was doing in using WindowsMedia and linking audio from different sources. That was why he knew exactly how to help as opposed to pointing me to the direction and leaving it for me to worry about conquering the finer details. In essence, out of the thousands of staff on call that day, I was led straight to the one who could help the most and be aware of the complexities using the audio software as I was trying to do.

Although originally I had not set a deadline for my task, along the way I managed to set one when speaking to the HDA. With their Family Weekend/AGM coming up early November, we agreed it could be a good opportunity to screen it at the Conference.

Cath Stanley (CEO of the HDA) would present it and Jackie could also use it as a a lead to her giving a talk on her #Hounds4Huntington’s project, now expanded into incorporate  #SybilOnTour. Without the above serendipitous episodes there is no way I could have fulfilled the project. I still like to think it was Steve’s way of either saying he would lend a hand, or taking over where I always seem to go over the top and bite off more than I can chew. Either way, I’m very grateful 😉

The photos below were taken by Jackie of the video being shown. The Family Weekend has been going for years but Steve and I never made it to the Weekend. Steve was uncomfortable with being around others with HD so I never pushed him to go even though it would have been a great support meeting others in the same boat.

I appreciate I could now go on my own but it wouldn’t be the same going anywhere without Steve. Seeing our photos on the big screen makes me kind of feel we got there in the end together and did our little bit together. 🙂

This slideshow requires JavaScript.

Having conquered the time-table to get the video done for the AGM showing, no doubt with the help of Steve lol, I had time to play around with the snaps and do a kind of parody version of the song Sound of the Underground originally made by Girls Aloud. See HERE for my take on the song – Hounds on The Underground. The lyrics are on the link HERE for people of a nervous disposition given my voice (there is a mute option), but still interested in my new lyrics.

Finally, a little poem for Steve accompanied by a photo of the brooch and a couple of photos from the last trip we took to France. They were taken in Lille in July 2005. We were on one of our short trips hopping over to France on the Eurostar from Waterloo. Sometimes it was easier and cheaper to go to France for the weekend than it was to travel in and around the UK. HD didn’t mean we had to stop being adventurous and romantic 😉

Strolling along the Banks of The Seine,

I’m taking a chance on engagement again,

But this time feels different, now I can tell,

That you and me work, where you know me so well.

 

We stop at a stall filled with jewellery and art,

And we both seem to fix on what’s stealing my heart.

Before I need say it, and comment “how sweet”,

The brooch is picked up and is bought as a treat.

 

The brooch gets pinned to my jacket of leather;

Another gift bought on a day out together.

Fun filled times when we both feel carefree;

We will treasure our time in advance of HD.

 

I knew it existed and could be a threat,

But a test confirmation was not in place yet.

Your duty to warn me was never in doubt;

You mentioned HD when first going out.

 

We packed in a lot and although you are dead,

You can still bring new memories from heart to my head.

A trip taken now brings it all to the fore,

And the shelf in my brain has room to take more.

 

There were other trips taken and more gifts exchanged;

Be they spur of the moment or things pre-arranged.

Over twenty eight years since the brooch came my way,

And it still makes me smile when I think of that day.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

POETRY IN EMOTION

Today (14 May 2016) would have been Steve’s 55th Birthday.

As I mentioned previously in my post ‘COINCIDENCE OR SIXTH SENSE?‘, had Steve been alive and relatively well it would have been the time we planned to ‘retire’ and get that ‘bungalow by the sea’ as I wrote about in my poem – The Best is Yet to be. 

Meant to retire together;
Married same age as me;
We both envisaged a company clock,
And a bungalow by the sea!

Sadly we didn’t get that far…

As time goes by, I still try to cope with those bitter-sweet moments in life when I want to celebrate events that I know would make Steve really happy, but he’s not here in the flesh and blood to openly celebrate with.

For example, Crystal Palace Football Club getting promoted; their staying up for more than just one Season  which was quite an achievement I can tell you; and now their getting through to the The FA Cup Final next week!

Where I am still doing the Goals4Genes in Steve’s Justgiving Page I will be donating £10 per Cup Final goal (£2 per League Goal; £5 per Cup Tie goal and £10 per Cup Final goal). To date we have raised £1,820.93 including GiftAid.

I blogged about Steve’s love of Palace in Playing for Laughs.  I also blogged about missing Steve on big occasions such as the London 2012 Olympics in The Real Olympians.

Had Steve still been alive, even if in a bed 24/7 and in need of special equipment, trust me when I say I would have found a way to get Steve to Wembley again, to watch his beloved Team play Manchester United in the FA Cup.

I am, if nothing, tenacious! I even hired an ambulance and trained driver to get us to Park House within 24 hours of Steve being discharged from Hospital. With that in place, the Hospital Consultant signed off a discharge on a Sunday afternoon, having admitted Steve 24 hours earlier with a suspected stroke.

That was after organising an urgent brain scan on a Sunday rather than wait. We are talking 2009 here and the ‘System’ didn’t seem to fail us through the lack of Junior Doctors and weekend workers on site. They were there working hard for the public as always!  Jeremy Hunt please take note!

The Consultant agreed Steve’s recovery would be better served by our going to Park House as planned  and not being heartbroken at losing our respite break together at such an amazing place. Some would say I was foolish to request a discharge, but with what Steve had, I figured his quality of life beat length of life hands down.

The Park House trip perked Steve up no end and he rapidly recovered. Thus proving his episode the previous Saturday was more down to tiredness; dehydration and being overwhelmed with a barrage of medical/social-services appointments, and sudden influx of carers coming into our home.

In the absence of now being able to go anywhere with Steve as it were, we will watch The Cup Final on the telly like most people. Then again, I dare say most people do not have a conversation with a casket of ashes whilst watching telly. Our application to participate in C4 Gogglebox could prove interesting…

When I blogged for Steve’s birthday last year in THE FAIRNESS OF AWARENESS, I mentioned Steve’s birthday coincided with Huntington’s disease Awareness Week. Once again, Steve’s birthday falls in the Awareness Week ( 9th-15th May ) and I have been working on a little project since the beginning of the year.

I approached a few people asking if they would be kind enough to read one or more of my poems and send to me on video. I would then send out using social media either in toto or adapting further to build in more background/awareness  information.  I was absolutely thrilled when Carol Royle and Mark Moraghan sent in videos.

I had approached Carol on the back of her amazing performance in BBC1 Casualty. Carol played a character with HD and her performance can be seen HERE.

With Carol’s help, I was able to put out 4 videos. The first 3 (see all 4 below) are of individual poems. The 4th video is the original read through that Carol sent featuring all three poems.

I was extremely touched to see Carol’s emotions crescendo as she builds to the last poem which was a very personal one written for Steve in my blog INSPIRATION NOT FRUSTRATION.

It was as if Carol felt my pain, and felt empathy for Steve too along with the enormous sadness of losing someone so special so young. Her anger also shines through in ‘The Name Game’ on behalf of those dealing with ignorance. I could not have received any greater a compliment!

Video 1 – The Name Game

Video 2 – The Rushed Hush

Video 3 – My Inspiration

Video 4 – Full reading

Such was the lovely reception of Carol’s readings, the HDA asked me to compose a special poem for her to read at an event on the eve of the London Marathon. It was to be read to the runners and supporters. I wasn’t at the Event myself but I understand it was very well received and beautifully read by Carol as ever.

Here is what Carol read at the Event:

Marathon

As I mentioned earlier, I was also very happy to be able to work with Mark Moraghan who sent in a video. Mark was approached initially by another HD Widow and HD Advocate  – Sue Wright. Sue had been Mark’s neighbour.

With Carol’s help also (she knew Mark from working with him in the past) I was able to put out another video featuring 2 poems (see below). The reading is of the poems ‘The Wheelchair Outing’ and ‘The Corrupted Computer’.

Video – The Corrupted Wheelchair

Once again I was truly touched by the depth of feeling and understanding afforded to my poems by the reader. A mixture of exasperation and anger at the behaviour of others and the frustration of vulnerability.

Mark’s cheeky Liverpudlian accent adds extra charm to the thought of ‘Bert’ riding a little train through the person’s brain along the tracks of his neurons. What makes it even more sweet is Mark is no stranger to narrating on a train theme. Here he is talking about Thomas The Tank Engine.

Apart from the amazing awareness opportunity afforded by Carol on the back of her performance in Casualty, and let’s not forget Mark worked on the sister show Holby, the HD Community has been thrilled at the engagement by people wanting to help the cause!

I personally have had a lot of support on Twitter from the Fans of Richard Winsor @RWinsorFans. Richard plays the character Cal in Casualty. In the programme, Cal and his brother Ethan , played by George Rainsford, are reunited with their mother who was played by Carol. Cal is spared the HD gene but poor Ethan has the mutation.

They have been amazing in opening up a Fundraiser Page for the HDA. They have also set up an area on their website to cover HD and posted HD awareness videos etc. Wonderful to have such a lovely and caring bunch of people on board!

Going back to my little videos, regular readers will have spotted I often blog about getting those strange and spooky connection moments when things just seem to happen as if I were getting help from you know who!

I’ve done various slideshow type videos in the past and used music which either helped tell the story; for example My Wedding Slideshow, or the track seemed to feel right for the video. I do, of course, try to credit the music but I have always been aware the copyright issues could come back and bite me on the bum! Me and millions more no doubt.

Where working with others on the new videos, I needed to up my game and look at options for safeguarding the music issues so that it wouldn’t compromise them.

At Steve’s Wake I gave away DVDs containing a slide-show of photos of Steve to music which I had made. I went to the trouble of getting a ‘Limited Manufacture Licence‘ for the DVD (25 units, 25 minutes of music or less.) The Licence cost me just over £50.

However,when it comes to extending music licensing to internet use it is a lot LOT more as I am sure you can imagine. I did think of using no music at all so as to be safe but it didn’t feel right leaving out a soundtrack.

So I did what I do these days. I gave up exhausting my brain with looking for solutions by researching an endless list of websites.  I put the telly on; put the kettle on; raided the cake tin; and said to Steve out loud “something will turn up Sweetheart”.

After my tea and telly break I went back to the computer and logged into Twitter to see what was occurring in the land of Twits. And, you guessed it, the answer popped up right in front of my eyes!!!!

Considering I follow around 400 Twitter Accounts at any one time, when I logged on to Twitter I opened on to a feed of Tweets under the theme of #AskHerFilm. That was for a Q&A session with Lucy Walker.

I previously blogged about Lucy this very time last year when featuring information and links for film makers covering HD. Scroll down THE FAIRNESS OF AWARENESS to where I mention her film ‘The Lion’s Mouth Opens’.

Here is what was on my screen:

Photo V3

How amazing that, at that exact time, someone under @Sarah_Haas  asked a question about music used in Lucy’s films. And also that Lucy replied immediately giving the site mobygratis.com.

I made sure to get a screen shot to look at properly where I couldn’t believe my eyes. But then again… I should have known by now the way Steve works. I’m not too greedy though and never ask for the Lottery numbers in case anyone was wondering lol.

When I looked into how Mobygratis  works it seemed the perfect solution. I was able to secure beautiful and powerful soundtracks under licence from Moby who so generously supports independent film and video projects which are not-for-profit.

What were the chances of that all happening eh?

I’m going to close with a poem for Steve and a photo. The photo was taken 10 years ago. Steve and me were on a cruise and it was the last time we went ‘abroad’ for his birthday. It was taken in Madeira during a ride on the Monte/Funchal Toboggan-run.

Steve looks so happy. Who would have thought he was in the advancing stages of HD and dead within 5 years? I don’t think he has quite twigged at that stage of the ride we would soon be hurtling down a very steep and winding public pathway without brakes!

I look like I am aware and am gearing up to laugh and scream in terrified hysterics at the same time. Thinking about it, I think I have just described what it is like to be a couple travelling the journey that is called Huntington’s disease.

I’m so grateful I was able to cling on to Steve’s arm and be by his side for the journey. And that he knew I was by his side until the journey stopped. That is, of course, if it ever has stopped…

C6

Your birthday’s come around once more;

I’m still at home just like before.

I’m still reflecting on our life,

And still deflecting grief’s sharp knife.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

A knife not aimed to wound the heart,

But trying to cut the ties apart.

I’ll dodge the knife another year;

I’m happy that I am still here.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I’m happy that you’re still here too;

Your impact runs through all I do.

Another case of your connection,

Leading me in right direction?

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

You still provide a strong desire,

To share our story and inspire. 

And others share our sweet devotion,

Through poetry, wrapped in emotion.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

COINCIDENCE OR SIXTH SENSE?

Today, 27th January 2016 marks Steve’s five year Angelversary.

I have posted each year to mark the day and my previous blog entries can be seen through the links below:

January 2012 – Moving Pictures

Until I am dead you will always be here,

And your presence grow stronger, year upon year.

January 2013 – Ring a Ring o’ Roses

The pain of grief brings some relief,

I couldn’t bear to find,

That one day I could carry on,

And you not come to mind.

January 2014 – Inspiration not Frustration

Your death so young and so unfair

Became your liberation

And yet you chose to stay with me

To be my inspiration.

January 2015 – Reaching for the Teaching

Another year has fluttered by;

Another anniversary.

As poems and my blogs suggest,

We’re still at home, your ghost and me.

Originally I was going to use this blog post to an update on what has been happening over these last five years regarding the book and also in my life; Huntington’s disease (HD) awareness; and most of all to pay tribute again to Steve who still inspires me every day.

My post kind of got hijacked along the way by a recent spooky event which ties in nicely with my last blog – A Wealth of Mental Health.

I wanted to share this story to mark the five years rather than reflect on life ‘without’ Steve. I hope you agree when reading the latest development that it could be argued it’s quite questionable whether I actually am without him?

In terms of my own sanity,

I’m not entirely sure,

Am I the one who stalks your ghost,

Or your ghost stalks me more?

A few weeks ago (10/12/2015) I woke up with a feeling of melancholy. The New Year was fast approaching and it got me thinking about what we had planned for 2016; the year we were both going to reach fifty five.

When Steve had organised his personal pension at the grand old age of thirty, and before we knew Steve’s HD Positive status, we decided fifty five was going to be the age we both pack up work and ‘retire’. As such, his pension plan was geared to 2016 to mature and be collected.

We both felt that, even if Steve had inherited the gene, it would still give us a few good years before HD severely impacted. We considered we would be set up for coping better should the need arise having retired to a bungalow in a nice relaxed location.

With Steve’s pension in place; my civil service pension secured alongside my private pension now also set up for 2016; our flat in Erith paid up with the equity improving year on year; and some savings in the bank, we assumed we could make the most of our time even if we only had a few years of early retirement.

There was not much information about HD in those days and, based on how HD had presented itself in Steve’s dad and other members of the family, we truly thought there was a pattern. A pattern that would suggest the impact would not fully strike until at a relatively late stage in life.

As far as we could make out, everyone else with HD had lived until they were at least in their sixties. How wrong we were to assume HD had any sort of pattern. Sadly HD was inherited and reared its ugly head much earlier than expected. The move from our flat to a bungalow with time on our hands was not to be.

On the particular December day that I woke up with the feeling of melancholy there was a sense of wanting to imagine what we would have been doing right now had things been different. I tried to shrug it off but a persistent voice in my head was saying “check out the current value of the flat”. That would give me an idea of how much we would have realistically had to play with and what options would have been available.

Where the nagging voice wouldn’t go away, and my curiosity got the better of me, I decided to go on-line and search on the words ‘Frobisher Road Erith 1 bed flat’. The search engine brought up a number of suggestions and I clicked on the first one which took me into an estate agency website.

The site showed a block of flats that looked very similar to where we had lived. No surprise really as Frobisher was part of a new development in its day and many of the blocks were built to the same design externally and internally.

From drilling down further, I saw there were several internal shots of the flat being sold. The flat was looking more and more familiar as I went from room to room. Was my mind playing tricks on me?

Did I subconsciously want to recognise and superimpose the layout and features? I was, after all, looking at photos taken in 2015 of a flat we sold back in 2005 yet recognising our wallpaper in the lounge; our flooring; bedroom units; a bathroom cabinet we put up in the early 90s, and to cap it all a framed New York Skyline picture that we left behind!

Where moving to furnished accommodation which we were renting on the private market and not therefore allowed to even put a nail in the wall, alongside having very limited storage options, we had sold or given away a great number of our belongings and furniture.

The New York picture was so big, and looked so good in its place, that we left it there despite both loving it. I remember conversations we had after 9/11 as it had been bought before the Twin Towers were destroyed. We would often look at the picture and reflect on the sadness of it all.

I decided to look at bigger screen shots of the rooms so that I could see the decor and fixtures better. I then compared them to photos I had of our old flat, including those on the sales brochure produced by the estate agents at time of our selling it.

Imagine my surprise mixed with joyous and sad emotions as I started picking out, one by one, the familiar parts that made me realise I was definitely looking at the very flat Steve and I had sold back in 2005!

On the corner of the website photos were the letters ‘Sold STC’. A few weeks earlier and the chances are I would not have seen the photos as they may not have been put up yet. Had I looked a few weeks later, given the flat was ‘Sold’ – Subject to Contract – the photos would probably have been removed and it would have been too late to see them.

Picking up on the spookiness of it all, I decided there must be a reason for me going into the site that day. Had I been a rich person I might have been tempted to buy the flat for old times’ sake. I’m most definitely not rich but I did wonder if I could at least regain one element back which Steve and I had loved and had been sad to let go. The New York picture.

I called up the estate agents. They turned out to be the same ones we had used. I explained I had previously sold the flat and left the picture there and would they be okay about getting a message to the vendors to ask if they would contact me with a view to buying the picture back? As you can imagine, it was a bizarre phone call and the agents were somewhat bemused but agreed to make a call on my behalf.

Later that day I got a call to say they had spoken to the vendor and they were able to pass on the contact details for me to liaise direct. When they gave me the name I recognised it as being the lady we had originally sold the flat to and I gave her a call immediately.

The vendor was surprised to hear from me after all these years but had realised something had happened to Steve where people had sent condolence cards to our old flat. She didn’t have a forwarding address/contact details to get in touch with me at the time so sadly was unable to forward them on.

We had a lovely chat and she agreed it had been so spooky that I had found the website, and that the picture we left was still around and in a featured photo. She had moved out a few years earlier and had been renting out the property to various tenants.

Although the picture had moved around the lounge over the years, it had remained in one piece and she would be happy for me to have it back. She didn’t want any money for it as she would be pleased for me to have it given it seemed like it was meant to be.

The flat was due to be cleared out once the contract was agreed and finalised. A tentative date of 20th December was mentioned for her going over again to clear out the last of the items but she would get back to me once she had more firm details.

Four days after our chat I went to work and had a bit of a result where I found out the tribunals I had been booked in for had been cancelled. If not given twenty four hours notice I still get paid for the day so it’s a win-win situation.

I was particularly pleased that the cancellations were down to the patients being ‘Discharged’ by the Responsible Clinician rather than an organisational hiccup; or the patient having deteriorated further. Being discharged suggested they were no longer in need of such a degree of treatment and were considered well and safe enough to go home which is a good outcome.

With the cancellations I arrived home obviously earlier than I was expecting. Not long after I got in I received a phone call. It was the vendor saying she was going over to the flat that day and did I want to go with her to collect the picture? Had I been tied up with work that day I would have missed the opportunity!

I wasn’t sure how I would cope with going back into the flat where Steve and I had spent most of our married life. Even walking through the communal door and walking up the stairs in the communal hall brought back so many memories. Good memories but also sad ones too which were combined with guilt and regret.

I had often wondered if I should have thought more short term about HD from the outset rather than play the long game, and insisted we buy a ground floor flat instead of what we went for – a second floor one. Poor balance issues meant the flat became untenable where the communal stairs were becoming too hard to manage safely. With no lift there would be a time Steve would be housebound and that would be too cruel for someone who loved to live life while he still could.

Fortunately the vendor had her young daughter with her which was a bit of a distraction as I was keeping an eye on her while her mother was sorting out a few things in the loft. It helped as I think I would have broken down if left on my own too long; or alternatively if we had needed to rush in and out of the place without my being able to come to terms with what a wonderful opportunity I had been given.

The flat was almost the same inside as we had left it. The lounge now had carpet overlaid on the industrial flooring which still extended into the kitchen. Amazingly the whole of the lounge window frame and windows had been replaced at some stage but it was definitely still the same wallpaper my brother-in-law had put up a couple of years after we moved in.

My brother-in-law had cursed our taste in buying such difficult wallpaper to hang and line up. It was quite expensive and all white with ingrained palm tree like fronds throughout which caught the light. The pattern could only be seen properly when  standing back from it, therefore not much fun to hang when needing to be up close and personal to cut and position on the wall.

In the bedroom I opened a wardrobe door and remembered how pleased I had been at choosing the design (a Sharps fitted one) so that we could make the best use of space in such a small flat. I had the right hand side and Steve had the left hand side. He chose internal drawers whereas I chose internal shelves as they would be better for my rows of shoes and boots.

The bathroom cabinet made me feel a bit choked up when I saw on the wall. I remembered the day we got it. We went out shopping with Steve’s brother who drove us into Croydon. We didn’t go out with his brother on our own much so it was one of those lovely days I stored in my memory bank where things seemed so special; so happy; and so carefree.

Having been living at my mum’s place, we were starting out in our own home and shopping for our own things to go in it. The future seemed rosy. Steve had actually been made redundant before we moved to Erith but with the new flat came a spell of good luck. Steve quickly secured a job in a company just a short bus-ride away and it seemed to underline we had done the right thing by moving to that area. Happy Days…

Before leaving the flat, I spotted one of the hall mirrors we had left and asked about whether it was staying. It was a mosaic one that I had bought one day on a whim when working in Docklands. I never really used it as the height was set for Steve rather than my four foot six frame.

When we would have last left the flat together, Steve probably would have looked in that mirror to check his hair as he always did. Maybe he said goodbye to himself that day too as it was the end of an era for his independence in many ways, what with our needing to move being driven by his now evident disability. The vendor kindly said if I wanted it I could have it so I jumped at the chance to recover even more memories of our old home.

The vendor drove me back to the Station. I thanked her; gave her a hug and then gave her an envelope with a thank you card before dashing off. I had sneaked into it some money to buy herself something where she wouldn’t take payment. It was the least I could do for such a kind act when many would not have cared.

It had been so kind of her to get back in touch and allow me to have back part of mine and Steve’s history. To see that she had respected and treated our flat/life so well, was an amazing thing to uncover. When I got back indoors I was free to let the emotion flow. I wasn’t sure where I was going to be able to hang the items but there was no way they were not going up.

If I ever needed proof that Steve is still with me and remembering me too after five years I just need to look at the mirror or the New York picture now hanging on walls here. Our past life entwined with the present in an extraordinary way.

Below is a poem I wrote around the above episode interspersed with photos to illustrate just how incredibly serendipitous my life can be!

At the very end I have posted a link to another Queen song. As readers will know we both loved Queen and it seems appropriate to close on a Queen song.

The flat we lived in all those years ago was very small as you will see from the photos. We loved it though and would describe it to people as “It’s not small… It’s bijou!”

Besides…Being only four foot six inches Steve would describe me at times as being “Bijou”.

 

A day at random, I click on a link;

Coincidence? What do you think?

It takes me to our old front door;

Coincidence? I am not sure.

1

The flat we shared, left long ago,

When needing to plan for what would follow.

Ten years have passed but the photos I see;

Are as if time stood still and you’re still there with me.

J19

I check with our photos and yes it’s the same;

Can even make out our old picture frame.

As if I am seeing the place time forgot;

Coincidence? Maybe it’s not?

This slideshow requires JavaScript.

I contact the vendor’s estate agency;

It turns out the vendor still knows you and me.

With apprehension, sadness, excited;

I call up the number. Our things reunited?

This slideshow requires JavaScript.

She’s happy to help and will do what she can;

She’ll contact again and we’ll work out a plan.

With time on my hands she gives me a call;

Coincidence? Perhaps not at all?

This slideshow requires JavaScript.

I go to the flat and as I walk inside;

Emotions flood but I hold back the tide.

Familiar rooms and the things that we used;

A comfort to see they were never abused.

This slideshow requires JavaScript.

Our home left with people who shared our own space;

And left if for me to revisit our place.

A few weeks later our things would be out;

Coincidence? I think that’s in doubt.

This slideshow requires JavaScript.

I bring home the picture to put on our wall;

And as I am leaving I see in the hall,

A pretty hall mirror amazed it’s still there;

You used it that last time to check on your hair.

60

The mirror now hangs within the new place;

Frame in our lounge, there was just enough space.

Both items returned as if meant to be;

Coincidence? You tell me.

This slideshow requires JavaScript.

On the opposite wall hangs a gallery;

Of various photos of you and of me.

I look at them often, they brighten the gloom;

That dazzling smile that would light the whole room!

It’s true that some photos are nearer the end

And your smile, not so open in what you extend

But they still give me comfort as they help to show

That you slept when you felt it was your time to go.

Again you are opposite what you once saw;

In the place we both lived in, some ten years before.

Is it odd that you’re facing the picture again?

Coincidence? I cannot explain.

J20

Five years on since the day that you died;

I still write about you, my heart filled with pride.

This latest occurrence of spooky reflection;

Coincidence? Or a spiritual connection?

Is my mental health questioned? Losing the plot?

Coincidence? What if it’s not?

Whatever the case I am thankful I see;

That I haven’t left you, and you haven’t left me.

G21

Click HERE for Bijou by Queen

Happy Angelversary Steve

With love from                

Your Bijou xxx

 

 

A Wealth of Mental Health

Today, 25th November 2015, marks what would have been mine and Steve’s 27th Wedding Anniversary.

I have blogged in here each year to mark our anniversary since Steve passed and it still seems like only yesterday that we were drinking bubbly with close family to celebrate our marriage. Even in the latter years, when Steve could no longer hold a champagne glass, I would get some in to celebrate and pour a bit in his beaker so that we could mark the day.

The previous blog entries for our anniversary can be seen below. No photos inserted this time as I have indulged myself again with a new slideshow which can be seen on the YouTube link at the end. I have also inserted a new poem at the end.

November 2011 – And the wisdom to know the difference…

November 2012 – Self indulgence

November  2013 – SILVER RINGS & SPARKLING THINGS

November  2014 – DEDICATION NOT MEDICATION

Since my last blog, I have started working again. This time it is as a part-time mental health tribunal clerk/assistant. Read more about Mental Health Tribunals HERE

The job takes me to various hospitals and mental health units. My role is basically acting as a gofer between the on-site Mental Health Act Office and the Tribunal Panel. This involves making sure Panels have what they need to consider the evidence, and that the ‘witnesses’ are ushered accordingly. The words ‘herding’ and ‘cats’ come to mind at times but it is all relatively straightforward and I don’t have to make the big decisions thank god!

Although I am out of the room whilst the Panel are conducting their deliberations and forming their decision, a part of my job does involve sitting in and hearing the proceedings. Given some of the experiences I read about in the Huntington’s disease (HD) community, where the carer and/or family can become frustrated with the tribunal system, I was a bit apprehensive at first.

I was worried I might feel uncomfortable with some of the stories of patients when wondering if I could be coming across formally diagnosed HD cases. Or, perhaps worse, cases of undiagnosed patients that might make me wonder…

So far I have worked on over 50 tribunals and I have found the experience very interesting; rewarding; encouraging; and even reassuring. On the whole, the system in place truly puts the patient at the centre. A fine balancing act establishing what is in the best interests of the patient and their families, and also the community at large. It is certainly not just a box-ticking exercise so as to simply be seen to be upholding the judicial system.

It is not perfect by any means. I am sure my take on it would be different if not being from an impartial view. That is to say had I needed it when being Steve’s carer; or even if being a patient in my own right? However, seeing it from a distance as it were does give a whole new perspective.

 I am pleased to see the Panels are not afraid to ask awkward questions on behalf of the patient to the representatives of the Trusts and other participants involved. This includes the social care representatives and other attending witnesses such as family and friends.

 On that last point, as much as additional people can mean additional headaches for me from a logistics point of view, I have been surprised at how so few of the tribunals have had a ‘nearest relative’ or other family; friends; and advocates in attendance.

 How sad that so many people do not have family and friends they can call on at such time to attend with them. Those who can add more context to the background and what may have lead to the crisis point leading to their being brought to hospital. Adding an insight into what support might, or more likely might not, have been/be in place or available to them in the past; present and in the future.

We are not necessarily talking about people without living family or friends. Sadly mental health issues can lead to fractious and fractured relationships which mean the patients distance themselves from their families and friends. By that same token, the families and friends may have distanced themselves from the patient. There is, after all, perhaps a point when people feel it is more detrimental to be there than not be there.

I will always be grateful that, although our relationship was strained at times and HD brings with it many challenges, I was able to work with Steve to keep the adverse psychological element of HD at a minimum. When I read about some HD cases it brings it home to me even more how lucky I was to have met such an amazing man!

Steve’s personality was sweet; loving; gentle; generous; his manners were impeccable and he was extremely tolerant. I never felt threatened by him in any way. He didn’t pose a risk to himself and he was certainly not a threat to others. There might be the odd kick or bash where the body flailed at times given the chorea aspects of the disease, but they were never intentional or done out of anger.

He was never a drug user or big drinker. He knew his limit and was a responsible drinker all the time I knew him, unlike me I should add. His money management was extremely good (his father had worked in a bank and instilled good practice); and he was not a big gambler. In essence, he was a true gentleman. The sort of man women dream of marrying!

It felt as if Mother Nature chose giving HD to Steve in order to test what would push him to the edge. She didn’t succeed though… Steve was always bigger than HD! Steve’s father was also a wonderful man and a true gent. Although he sadly gave his son a faulty gene, the other attributes Steve inherited from his father were truly a gift.

I’d like to think I helped to keep Steve away from the mental health roundabout that can be inclusive in the ticket for the HD ride. I have a naturally questioning mind and can also have a very cunning nature. Sometimes you have to box clever and medicine may not be the only way. For example, the time when Steve started seeing a ‘ghost’ in his bedroom.

Steve’s bed was facing a door to the hallway and he would point to the door saying that a man was there. Like anyone, at the beginning I tried to persuade him that there was nothing there and it was his imagination. It was clearly distressing Steve that he could see a ‘ghost’ and that I didn’t believe him/see it for myself.

 After a while I said I could see the ‘ghost’ too and I would shoot him to make him go away. I would point my arm with a pretend (imaginary) gun at it and tell him the man is gone now. That worked but it was going to be another part of the night-time rituals which had to be gone through before we could settle, and obviously a disturbing development.

From observing and thinking about possible triggers it seemed that Steve was focused upon a certain part of the door frame where he would believe the ‘ghost’ was standing. Perhaps there was a shadow of something I could not see, or his mind was back-tracking to a bad memory thus bringing to the front a hallucination?

I decided to swap Steve’s bedroom around so that the bed would be facing the other side of the room. Instead of having any sight of a door or door frame there was a wall instead. I placed the wall clock straight ahead as it had previously been on the opposite wall so as not to confuse Steve too much. He needed his clock in sight as I have mentioned in a previous blog.

Without the focal reference point the ‘ghost’ seemed to be forgotten. I was so grateful that we didn’t have to go as far as seeking medical intervention. I felt we might be asking for trouble if going down the anti-psychotic route. Treating one problem and creating several more down the line…

For anyone who has read my book or any of my blogs, you may already be aware I have always been wary of the over use of medication in treating people. Medication preferably being a last resort rather than considered an automatic/ first resort.

I never did get a response to my request for help to ‘group’ the long list of meds and treatments that I had come across on the Huntington’s Disease Association Message Board. I listed the 46 I had come across so far in my blog One Dose of Tweetment or Two?

In the course of my job, it has been very interesting hearing more about alternative approaches to medication by way of talking therapies such as Cognitive Behavioural Therapy.

I am no stranger to therapy myself. I blogged about my experience in Counting the Cost of Caring & Sharing. I get the feeling that, had some of the people I come across in my work had access to private therapy, they too could have got through their own crisis points and hopefully got on with their lives as I managed to do for a long while after.

In using the term ‘private’ I’m not necessarily talking about private health vs National Health. I was able to dip in and out without the need to tell anyone about it at the time. That helped in terms of the stigma around seeking help for mental health issues which sadly still exists. In saying that… My own circumstances were a far cry from those whose mental illness is of a ‘nature’. That being inherent as part of an organic illness such as HD.

A Report titled Psychiatric and behavioural manifestations of Huntington’s disease written by Sameer Jauhar & Stuart Ritchie,  which can be read HERE , provides a good insight into some of the complexities of dealing with HD patients in a psychiatric environment. It recognises the juxtaposition between displaying what could be termed as stability and non-stability. Under the section ‘Admission to hospital’ we read:

It is our clinical experience that the majority of hospital admissions during the predominant course of the illness are to psychiatric services. A small number of patients with the disease, usually those with a background of failure to cope, require admission because of severe psychiatric illness or a breakdown or refusal of community services. Treatment of the psychiatric illness is generally straightforward and placement in hospital provides a secure and structured environment, addressing many of the neuropsychiatric behaviours that may have precipitated admission. Cognitive deficits combined with neuropsychiatric symptoms often cause the greatest difficulties in behaviour, for example anergia, lack of initiative, blunted affect, egocentricity, constant demands, irritation and threatening behaviour. In-patient staff may make comments along the lines of ‘patient A shouldn’t be here’. This feeling may arise from an absence of a hard ‘psychiatric’ diagnosis, perhaps reflecting a common perception that patients with Huntington’s disease are not primarily ‘psychiatric’ in nature. There may be a failure to appreciate the organic aetiology of the behavioural disorder of the disease and the limited control the patient has over their symptoms. The patient may be labelled as ‘lazy’ or ‘demanding’, with subsequent alienation. In-patient staff often underestimates the importance of their role in providing a structured environment and the resultant benefits this has in containing the neuropsychiatric symptoms. The problem behaviours often resurface if discharge from hospital occurs without appropriately structured community services. Use of the Mental Health Act may be appropriate, and should follow the principles laid out in the legislation.

It’s a long paper, and there were lots of bits that struck me but I pulled out the bit above where they recognize misconceptions and the labelling of ‘lazy’ and ‘demanding’. I would be lying if I said that myself and others coping with those affected by HD didn’t go through stages of thinking along the lines of how much is HD and how much is manipulation? Again, I need to return to books like Hurry up and Wait by Jimmy Pollard to outline and remind me and others the nature of HD can be unreasonable in a world that looks for reason.

On a more generic note, it is fascinating to hear of new therapies which are being developed such as ‘Avatar’. Read about Avatar HERE AND HERE.

I am not sure if something like Avatar would work with the mind of someone with HD as communication is often compromised on so many levels. I imagine impatience would also complicate matters. That said… how amazing to be using computerised interaction to tap in to the psyche in such a way.

As for my own mental health…

My work takes me to various locations as I have said. That in itself has been a bit of an emotional assault course. Like the saying goes, “what doesn’t kill you, makes you stronger.”

The impact arises from visiting hospitals that are on the same sites Steve and I went to in order to see neurology and other services. And also from going back to places from the past where we used to live. Just as Jimmy Pollard cleverly explores in his book Hurry up and Wait under the subject of recognition being easier than recall, the brain seems to be stimulated more sharply when given visual representations rather than being asked to draw upon memory to visualise. Being confronted with visual reminders of the past can evoke such powerful memories and emotions within the context of grief Happy and sad emotions that hit you for six!

One of the sites I cover is Bethlem Royal Hospital in Beckenham. If Bethlem sounds similar to Bedlam that is because the term comes from it.  It is ‘The oldest psychiatric hospital in the world, dating back to 1247′ and whilst it has not always been based in Beckenham (it moved there in 1930) it could so easily have been a port of call for Steve had things been different. Until 1988, when Steve moved to Clapham Junction in Battersea to live with me, his home was in Beckenham. At this point, I should highlight that Bethlem has changed over the years to become an award winning psychiatric hospital and is home to the fascinating Museum of the Mind.

Travelling to Bethlem from Greenwich involves taking a train to Lewisham. I then connect with the train which calls at Ladywell; Catford Bridge; Lower Sydenham; New Beckenham; Clock House; Elmers End and Eden Park. Eden Park is where I get off to take a short bus ride to the Hospital. Lower Sydenham was where I would get off when visiting Steve’s home. It is a short walk from Lower Sydenham to Steve’s old place.

I had not been to the Lower Sydenham Station for many years but it was and has been hard not to break my journey. To get off imagining he would still be there and I could step back in time. In a way I was glad I would need to get off further down the line where I had never had call to visit with Steve and therefore no associated memories.

Whilst waiting at the bus stop at Eden Park, I was taken by how well behaved and smart the school boys were who pass by. Smart maroon blazers; properly tied ties and shirts tucked in. Walking and not running. Talking to each other rather than shouting. A credit to their school from what I could see.

I am happy to be called a snob but I was thinking how refreshing that was in this day and age. I made a mental note to look up which school they might belong to. Imagine my surprise and delight but also heart wrenching pride when I found the name of the school next to the Station the boys attend was none other than Langley Park School for Boys.  Langley Park was Steve’s old school!

It was another emotional bomb. It would never have occurred to me that Steve’s school was several train stops away from Lower Sydenham but the impeccable behaviour and manners that had struck me in the present students would have also been part of Steve’s upbringing and his personality. Yet another visual reminder of Steve. His past colliding with my present.

Looking at the latest Ofsted Report, Langley Park have been rated ‘Outstanding’.  It was not just me being blindly nostalgic on Steve’s behalf. The Report shows it is Outstanding across the board of criteria.  Having worked at Ofsted for a while back in 2013 covering admin for the Inspectors in the London Region ,  I have read quite a few Reports in passing. I have to say it was one of the best I have seen.

Steve would be extremely proud and I can’t help but wonder if Steve steered me towards the location. “Don’t feel depressed thinking of all the sadness of what Bethlem stands for in my home town. And also what might have been. Take comfort in knowing the area you now see  has good memories for me of a more carefree life in my youth, and of what shaped me.”

Yes… I am aware of how strange that last bit sounds. Some would probably say I need to be on the ‘patient’ side of the table in tribunals. At least I am building up a list of solicitors specialising in mental health I suppose.

My latest poem for Steve is below. It touches on how much the psychological element of being a carer was more needed than any level of physical strength and we had to work together on that basis.

Underneath that is a link to my latest dabble in slideshow video.

The song I have used is by a band called Everything but the Girl and is called ‘Missing’. It played in my head as I sat on the train that first time I went to Bethlem and I had to stop myself from crying in public.

Click HERE for my new slideshow – MISSING

Update – Unfortunately, by using the music track, my video has been ‘blocked’. 

I have therefore inserted the photos which were featured in the slideshow to the track below. Not quite the same obviously, but better than nothing I suppose. 😦

2

 

Some of the photos have not been used before. They are not the usual happy holiday ones. They are, in the main, just everyday ones taken at home. I am very sad now that I didn’t take more in our homes and annoyed with myself that I don’t have any of Steve from our time in Woolwich at Greens End. As it is I only have one photo from our time at Woolwich. In the lounge of our rented flat in the Vista Building. I have mixed feelings about that snap. The table is where Steve’s casket is placed on. It’s almost as if he is looking down on himself.

I have very few from our time in Erith which is where we spent most of our married life. I am grateful though that the only snap I have of us together in the Erith flat was taken when we were not posing (watching television from the looks of it). I smile now when seeing his arm naturally resting on me, and my arm naturally resting on his.

There are a few from our last home, in Greenwich. The quality of some of the snaps is very poor but they were often taken on my mobile phone which just happened to be at hand to catch a moment in time.

I guess I knew Steve’s time was running out the moment we moved to Greenwich. His HD had stepped up a pace and the only other home he would be likely to be moving to was a nursing home or hospice. I am so grateful we didn’t need to go down that route. I have no intention of ‘moving on’ in any way, shape or form. I am happy in my state of being and where I am physically and psychologically speaking.

 

TALKING TO STARS & STALKING AVATARS

I wasn’t trained to read your mind,

My guesswork intuition,

And all I know is loving you,

Was crucial to my mission.

 

Reconstruct distorted views,

Combined imagination,

Complexity of gaps filled in,

A neuro-syncopation.

 

Using all the mental tools,

To build a shelf of hope,

On which to place our strategies,

And aim to help you cope.

 

Unscrewing all the guarded signs,

Allowing them to fall,

And catching hold before they crash,

Against the ground and wall.

 

If looking at the here and now,

And how things may have changed,

You’re still ingrained as part of me,

And how my life’s arranged.

 

In terms of my own sanity,

I’m not entirely sure,

Am I the one who stalks your ghost,

Or your ghost stalks me more?

 

 

 

THE FAIRNESS OF AWARENESS

Today (14th May 2015) would have been Steve’s 54th birthday. I wanted to write a post to commemorate Steve as I have done in previous years. In fact, my first WordPress post was written on 14 May 2011.

The first posts were not so much about Steve, but about the book I had just self-published – Curse in Verse and Much More Worse. Even if this were to be my last blog entry, I’m glad I carried on with adding posts as it is lovely to have a kind of diary – come – archive covering the years after Steve’s transition. Not forgetting Steve in the process but remembering our life together and celebrating him!

This is a very long post so the chances are people will switch off before getting to the snaps of Steve at the end (and my new poem too). On that basis I am popping in a couple of snaps early. It’s Steve’s party and he can smile if he wants to!

Steve Bournemouth cropped

    Previous posts for Steve’s birthday, including my first entry, can be seen by following the links below: Cruisers of 1998

    May 2011 – I may regret this…

May 2012 – Toasting and boasting

May 2013 – One dose of Tweetment or two?

May 2014 – The Show Must Go On

This year, Steve’s birthday falls slap bang in the middle of Huntington’s disease Awareness Week (11th – 17th May).

I haven’t done much this year for Awareness Week in terms of trying to get publicity for HD. I think I reached my peak in 2013 by blagging my way onto a local radio show which I blogged about HERE and HERE.

I have, however, done a series of adapted snaps to put out through the Week via social media.

Today’s offering is below the photo of me and Steve on his Birthday in 1998.

The photo to the left was taken a few years earlier on a trip to Bournemouth. Both show Steve’s lovely smile which seems to slant upwards to the left cheek, making it dimple more.

Ruby 14

The photo shown is part of my #TrustMeImaRuby series (Trust Me I’m a Ruby and my own jokey take of the phrase “Trust me, I’m a doctor”). The others can be seen as part of an awareness  slideshow I created which can be seen HERE.

Ruby (right) and Ruby-Tuesday (left) are two of the ‘cats’ featured in my poem ‘The Jealousy’. I figured people have a thing about cute cats (me included) so I would get a better response if showing them rather than my own ugly mug. I also featured  them in my video for Pie in The Face Day aka PITF. See the video HERE.

PITF was a call to arms for HD awareness by Sarah Parker Foster who is a fellow blogger. More about Sarah’s blogging later on.

Since my last blog, I attended a screening of the film ‘Do you really want to know? which was screened at the Genesis Cinema in London. The screening was organised by Genetic Alliance UK and the audience was made up mainly of students with an interest in genetics.

A Guest Panel was also in attendance comprising of Charles SabineRachel Jeffares who is, SWAN UK Representative, and Georgina Hall, Consultant Genetic Counsellor from Manchester Centre for Genomic Medicine.

Following the screening there was the opportunity to discuss the film and the implications of clinical research and testing with with the Guest  Panel . The implications covered many areas; not just those raised in the case of the film and ‘rare’ conditions. It also raised the ramifications of the recent commercialisation of making genetic testing available to the general public by companies such as 23andMe. In case you were wondering… HD is one of the health conditions not covered by 23andMe’s Personal Genome Service.

See HERE for an interesting article about the screening which was featured in BioNews produced by the Progressive Educational Trust.

As previously mentioned, Charles Sabine was on the Panel. I was thrilled to be able to finally meet him in person and give him a signed copy of my book. Charles gets a mention in my book under the poems ‘The Owl and the Ostrich’ and ‘The APPG’.

I’ve added a couple of photos below although my photos do leave a lot to be desired. I took along Steve’s old (non-digital) Canon SureShot. I kind of like to think he would be pleased I still use it. I suspect even with a digital camera though I still would have been rubbish at getting the framing right! I hope people can make out Charles is holding a copy of the book lol.

Charles 2

That makes my collection up to two HD heroes now as I have the snap of Jimmy Pollard with my book as well in my Blog Dedication Not Medication. That said… anyone who actually bought the book is a STAR so if anyone reading this blog wants to send in a photo with the book I would  love to add you in here!

Charles 1

For those wanting to buy a copy of Do you really want to know? you may have seen that the DVD is currently only available for sale in the USA and Canada. However, since the screening it has appeared in full on YouTube.

I’m not sure whether it was put on there by the people connected with distribution. It may therefore be taken off at some stage but, in the meantime, I have added a link HERE as it really does need to be seen more widely.

It can make tough viewing in places but there are a lot of messages of hope in it too! The message of hope is also reinforced in the following video which Charles presents as part of a recent CHDI Conference.

Video postcard from 2015 HD Therapeutics Conference

It seems there has never been a better time to sign up for becoming involved in research. Whilst a ‘cure’ may still be a long way off, it is still key to address the individual symptoms within the illness in order to make living with HD as manageable as possible. This is both for those with the illness/at risk and also their loved ones and carers.

If you have read my  May 2013 Blog – One dose of Tweetment or two? you will already have seen I put up a ridiculously long list of medication or treatments that had been mentioned on the HDA Message Board as being prescribed in connection with those being treated for HD.

Some might argue there are too many drugs on the market already and, as my ‘The Cocktail’ poem points out, the interactions with other meds/substances in the body needs to be considered.

However, what an amazing thing the CHDI  and also Enroll-HD  are doing for the HD Community insofar as all the research is focused on HD! By that token surely there is far greater likelihood of the drugs/treatments not only being more effective, but those working in the field will have a better idea of the real issues those with HD have in the first place. That must surely help filter out more the ‘hit and miss’ approach which we seem to have at the moment?

To put it another way…

I went into NHS Choices recently. I put in ‘Huntington’s disease’ in the search part on ‘Browse medicines by condition’ to see what recommended medication is currently available. See HERE  for the result. Text reproduced below for those who can’t access the links:

Medicines A-Z – Medicines for Huntington’s disease

Over-the-counter medicine. Medicine with this icon can be bought without a prescription.

T

Now it’s fair to say more is covered in the NHS Choices webpage that covers Huntington’s disease, but as you can see there is only one drug (Tetrabenazine) listed in the medications by condition section.

It makes it even sadder that the description says :

 Overview

Information specific to: Tetrabenazine 25mg tablets when used in Huntington’s chorea.

Tetrabenazine (tet-ra-ben-az-een) is a medicine which is used in huntington’s chorea.

The information in this Medicine Guide for Tetrabenazine varies according to the condition being treated and the particular preparation used.

Your medicine

Tetrabenazine is used to treat Huntington’s chorea. It works by depleting certain chemicals in the brain which cause the abnormal movements. As the activity of these chemicals is reduced, Tetrabenazine can help control jerky, irregular and uncontrollable movements in people with chorea.

I would have felt happier had I seen our NHS had enough enlightenment of the illness to call it ‘Huntington’s disease’. Or were they to use the phrasing differently. For example  ‘used in treating chorea’ or ’used in treating chorea within those with Huntington’s disease’. As it stands, it suggests the name is still Huntington’s chorea.

Anyone who has read my poem ‘The Name Game’ will be well aware that I have an issue with the medical profession and the Health Service not looking beyond the chorea aspects of the illness and seeing it is far more complex! No excuse for the NHS website to be using such poor wording on an easily reviewed and update-able website in May 2015.

So that was what they have for HD. One drug for a thing they call Huntington’s chorea. Surely similar diseases like Parkinson’s will sadly be just as misunderstood and misrepresented? But then I remembered there is so much more awareness of Parkinson’s.

I put in ‘Parkinson’s disease’ on the same website and got THIS  Reproduced below:

Medicines A-Z – Medicines for Parkinson’s disease

Over-the-counter medicine. Medicine with this icon can be bought without a prescription.

A

B

C

D

E

K

M

N

O

P

R

S

T

l could be wrong here but did anyone spot the difference? [Inserts eye rolls at this point and hopes the reader hasn’t come down with finger rsi having scrolled down so far…]

Chances are some of those meds can work for HD too. Indeed, some are listed in One dose of Tweetment or two? as having been prescribed for HD. I would therefore never suggest they are not an option just because they don’t come under the HD label. God knows we have to be grateful for anything which can help.

However, wouldn’t it be WONDERFUL if a set of new drugs could be discovered? Drugs which the doctors and others could refer to for those who walk into their clinics with HD, in the knowledge that they have been tried and tested for that condition in particular?

This being the case rather than our loved ones simply being given treatments which were developed with other conditions or patient groups in mind, perhaps actually less complex than HD? Tetrabenazine is the only one on the HD list to date. Can this mean no one has confidence enough to expand that list to other suitable drugs? And by that token, acknowledging the wider aspects of HD such as depression; psychosis; saliva control at later stages etc.

If developed with HD at the forefront, the drugs could be more effective; less contradictions may apply, and ultimately branded for the disease providing more medical awareness and recognition. This won’t happen though if drugs can’t get out in the public domain in the first place. To do that there needs to be human testing on those who would be most likely to show real outcomes and, dare I say, side-effects.

I appreciate not everyone may be lucky enough, or even suitable enough, to get on a research programme. Of course, not everyone is willing to participate even if asked to take part.

For our own part when Steve and I first went to Queen Square, to the National Hospital for Neurology and Neurosurgery, we were asked to be part of Dr Sarah Tabrizi’s  study on  Biomarkers. Steve did not want to be part of it. In fact, he was so upset just being in the hospital that he said he didn’t want to go back at all.

In the end he agreed to be seen at another hospital which was more local and didn’t have Neurology in the title as such. Although we were booked in with the ‘HD Multidisciplinary Clinic’ of that hospital I had to make out it was just a normal clinic. Steve wouldn’t have agreed to be there at all bless him had he been aware the majority of those around us were there for HD too.

I often wonder if Steve would have been here with me now had I coerced him into being part of research, or put my foot down and made him go to The National who were, and are, a Centre of Excellence in the field of HD. That would have given us more access to current research and trials and maybe more HD specific monitoring and care.

That’s not to say we didn’t receive good care in the main through the services we used, it’s just that the non-specialist hospital may not have had as much HD knowledge and kudos. I wanted the best for Steve if that was possible, but not at the expense of terrifying him in the process.

I took the view that I still had to respect Steve’s wishes. His body; His mind; His life and ultimately His death. The decision was His and that is something we had agreed way down the line before symptoms started. If he got HD I would remember that. It wasn’t easy at times as you can imagine.

No one should feel an obligation to be a ‘guinea pig’. That’s not what Charles; Jeff Carroll ( in the Do you really want to know? film) or anyone else is saying. It has always got to be down to personal choice. To have a choice though you need to be aware of what the choices are in the first place. It’s about THE FAIRNESS OF AWARENESS.

Going back to the subject of films, it has been very exciting to see there are more films and documentaries being made about HD. They will serve to help those caught up in the disease understand it better for their own perspective and those of their carers; advocates and researchers.

The carers; advocates and researchers, in turn, get to see the other side of what it might mean to have HD or be at risk. Of course, such films and documentaries will also serve to educate a wider audience such as the general public!

I was very proud to be a Kick-starter Backer ‘Supporter’ for Bridget Lyon’s  Project for her film ‘The Inheritance’ which is receiving huge critical acclaim.

You can see the trailer for The Inheritance  HERE.

Another HD related film, which is being critically acclaimed, is Lucy Walker’s ‘The Lion’s Mouth Opens’. In fact Lucy’s film had been short-listed for Best Documentary Short, Academy Awards 2015.

You can see the trailer for The Lion’s Mouth Opens HERE

Interestingly it was only a few years ago (2009), at another CHDI conference, that it was predicted one day there would be a film receiving an Academy Award covering the subject of HD.

Julie Friedman, who is a filmanthropist, gave the CHDI Keynote Speaker’s presentation in Cannes. She presented to a room full of scientists in a most remarkable and personal way.

You can see Julie’s Cannes presentation  HERE.

If you watched the video you may have been surprised as I was at how many films and shows have been made over the years which feature HD. Maybe someone ought to make a list?

I mentioned Sarah Parker Foster at the beginning of this rather long blog. Sarah has produced a fantastic website/blog which is helping to list all the films; book; social media resources and a whole pile of other amazing and useful stuff which will be of so much help to the HD community.

Sarah has the HD gene herself. She is symptomatic so it takes an enormous amount of energy and concentration to blog and construct her work. Take a look at the site ‘Sarah’s HD List: aggregated, curated, and updated information about Huntington’s Disease all in one place’  HERE.

As you will see, there is an incredible amount of work that has gone into it! Sarah invites us all to make use of the information and also to help by way of adding data information and sources, or helping up-date data/correct misinformation as things move on so quickly in the world of Huntington’s.

One of the most recent additions to Sarah’s ‘HD in fictional films, books and TV’ section is the new Lisa Genova title Inside the O’Brien’s’  The book has HD as its central focus.

Lisa is the writer of the renowned and best-selling book Still Alice, The book went on to be made into the award winning film starring Julienne Moore who plays a linguistics professor diagnosed with Early-Onset Alzheimer’s disease.

Inside the O’Brien’s is a wonderful book and beautifully written. Lisa uses a family in Boston to throw light on how HD is a family disease.  It delves into the myriad of physical; emotional; social and even financial issues which families with HD in their lives, or the threat of it, can have thrust upon them.

It is clear from the book that Lisa went beyond just drawing on her own neurological background knowledge where she has a degree in Biopsychology and a Ph.D. in Neuroscience from Harvard University. She obviously immersed herself in the challenges and experiences of the characters.

It therefore came as no surprise to read about Lisa’s help from, and direct involvement with, some of the members of the HD community in one of Sarah’s blogs. See Sarah’s blog covering some of the background to the book HERE.

In the book the central character – Joe – hears of his test results on St Patrick’s Day. It was St Patrick;s Day ( 17th March 2005) that Steve and I walked out of the National Hospital for Neurology and Neurosurgery having had it confirmed through his blood test Steve’s symptoms were that of Huntington’s disease.

I mentioned above how he refused to go back there. Blood was taken for the Biomarkers. I also gave blood for the study as part of the control group. Steve’s tenseness and jerkiness at the time meant he didn’t have such a good experience with having blood drawn for the research.

I could have continued on my own for the control group readings.The thing is,it kind of felt like I wanted to reject the place in solidarity with Steve. He would have felt I was colluding with the enemy had I gone back.

I remember I kept telling Steve we would still be going for our usual St Patrick’s Day Guinness, and that we had even more of an excuse now! That wasn’t a nod to drowning our sorrows. We were brought up in the age when there was still the notion that Guinness was good for the blood.

As strange as it would seem we were too far gone down the HD line to have been in a state of shock at hearing the news we had just been given. If anything, I think had the blood test come back as negative we would have been in a state of shock wondering what on earth had been happening to us in the last few years?

Actually, it’s fairer to say ‘I’ would have been in a state of shock as Steve would have been more inclined to be relieved,and believe I was making everything up and acting over cautiously or sensitively.

Sadly it wasn’t just in my head. Steve’s father had HD and we had been aware of the risk of 50/50. Various other relatives had succumbed to HD so it was natural to put two and two together. The denial for Steve still conveniently came into play along the way however.

That said, I later came to wonder how much of Steve’s denial was simply being misinterpreted or misunderstood? I came to think much later on it could be more sadly a symptom called  ‘organic denial as Dr Jane Paulsen describes it in A Physician’s Guide to the Management of Huntington Disease (see more below); or anosognosia as Lisa refers to in her book. Like many others, I didn’t even know there was such a thing until fairly recently. 

It is important to distinguish unawareness in HD from the more familiar kind of denial in order to avoid thinking of people with HD as suffering from a purely psychological problem. Unawareness in HD is thought to result from a disruption of the pathways between the frontal regions and the basal ganglia. It is sometimes called “organic denial,” or anosognosia, and is a condition that may last a lifetime.

Organic denial can be confusing to health professionals, friends, and family members who may interpret the individual’s unawareness of symptoms as a wilful decision to ignore what is known to be true, when the reality is that the individual simply does not perceive that what is happening to him or her represents symptoms of a disease.

It may be that the person can talk about problems she is having, such as memory problems, involuntary movements or issues with balance, but not acknowledge that he or she has HD. In such a case, the focus should be on mitigating the individual symptoms without repeatedly confronting the issue of the underlying diagnosis.

Where there is noncompliance with therapy or nursing care because of unawareness, it may be useful to develop a contract that creates incentives for compliance while sidestepping discussion of the diagnosis.

Anyway…Going back to that fateful St Patrick’s Day… We went to a pub not too far away from the Neuro Hospital and were the only ones in it. It was a lovely sunny day but we sat inside at the far end. The pub was virtually empty but it still felt like we wanted to hide in the corner.

Steve was very quiet, of course, but the music came on in the background and we started talking about the songs; and made other chit chat about stuff and I agreed he didn’t have to go back to the place if he didn’t want to. I felt so totally sorry for him bless him.

A couple of pints later and we were making our way home via the delights of a packed underground and packed train on a warm March early evening. Steve was wobbly anyway from HD. I have a slight limp from my scoliosis (not to mention the gammy right foot). On top of that, being only 4 foot 6 inches tall other pedestrians mistake me for the invisible woman at times and barge right into me. Steve had been my counter-weight and support anyway (in so many ways) over years alcohol or no alcohol permitting. We made a fine pair at the best of times.

Lisa’s book made me cry in places but it also made me smile too. I read this particular part and couldn’t help but smile. Steve was my best friend and I was his and we would stagger along through life physically and metaphorically speaking.

“Come with me. Let’s get you a cuppa tea”

Rosie acquiesces. They walk together, listing and pitching, bumping off the hallway walls and each other’s hips. A drunk wife and a husband with HD. They make a fine pair. As they lurch down the hallway and finally make it to the kitchen, it occurs to Joe that this is the best anyone can hope for in life. Someone you love to stagger through the hard times with.

It reminded me of what I was trying to convey in my poem ‘The Best Is Yet To Be’:

‘Grow old along with me,

The best is yet to be’;

It’s clear when Browning wrote those lines,

He hadn’t met HD!

 

Meant to retire together;

Married same age as me;

We both envisaged a company clock,

And a bungalow by the sea!

 

In our forties and home together;

O.A.P.s we’ve become before time.

We cannot do ‘fun’, or hols in the sun;

Our mates they are all in their prime.

 

But there’s one thing we will have forever,

And our friends will one day come to see,

That we may not have grown old together,

But our time was the best it could be.

Between March 2005 and Jan 2011 we still managed to pack in a lot of living and I’d like to think a lot of loving each other too.

Seeing my dodgy camera skills when I got the photos back from the developers, and looking at the snaps of Charles , I didn’t berate myself for being rubbish at taking photos. They made me smile as they captured  Charles looking dapper, bubbly and happy. Just like he is in many of the videos I have seen over the years.

I have a whole host of snaps of Steve displayed around the room. Some are very well taken though I say so myself. Others leave a lot to be desired. Looking beyond the imperfections of my poor camera skills, and seeing the perfections in Steve’s wonderful smile is all that matters. Those lovely blue eyes and that dimpling of the left cheek where Steve’s smile always seemed to rise more to the left than the right. That’s what I see now rather than how poorly framed Steve was in the lens. That’s what matters more!

The beguiling/smiling eyes and dimples.

 Steve at Frobisher

Looking at your photos now,

I don’t see imperfection.

Twinkling eyes and lovely smiles,

Stand out in your reflection.

2 Cafe Rouge Birthday 1

Happiness exuded,

With a smile from ear to ear;

Subtle smiles included,

Show an inner sense of cheer.

1 Steve Claremont

 Cheeky grins from long ago,

And some from time much nearer;

All bring back your sense of fun,

And make your story clearer.

Steve and Woman lol cropped 2

Many of us see two letters;

‘HD’ stands for illness.

Use another meaning,

And the letters stand for stillness.

166 Cruise 2

High of Definition,

Is another way of seeing,

Clarity of vision,

 And a better way of being.

28 Llandudno 1

Interference now stripped out,

And clarity of view,

Makes it even easier,

To see you were still you.

The above pictures include:

  • Taken by me circa 1994 at our flat in Erith
  • Birthday meal in Greenwich (Cafe Rouge) 2007
  • Taken by me at the flat in Greenwich just before going to the 2007 Birthday meal
  • Taken at a Halloween Party in 1987. Steve went as Count Dracula. For a laugh, during the evening he put on our friend’s ‘Wizard’ wig and let me take a photo
  • Taken at the start of our Funchal Toboggan Ride. Cruise excursion May 2006. The video hyper-link on the name is not ours I hasten to add.
  • Taken on Llandudno Pier in 2007.

I tend to draft my posts well in advance of an event date and add bits as I go along. Hence the length of some of them. In drafting this one I was wondering about whether I should cut out some of the snaps of Steve I had planned to put in?

Then I thought [insert your own expletive here] IT! I want to share information about HD but the blogging, especially on days like today, is about Steve and in his memory first and foremost!

Then, as if to say I shouldn’t hold back, a few days ago I got a private message in FaceBook. The person wrote:

Trish, I randomly came across the YouTube video you made for Steve and it brought me to tears. Since the song was “In your eyes” I made sure that I looked into his eyes for each picture, and I know he was a very special man. You keep parts of him alive to share with others and it is an honor to have a glimpse at who he was.

I was very touched by that message. It made me even more determined to share my photos and videos of Steve. People may still scan through quickly if they bother to read the blog at all. At least I am still keeping Steve alive and central to my thoughts and research for the blog. Sending me a message again? Bless him… He is my inspiration for all that matters after all. I’m sure he’s still looking out for me.

In your eyes.

Accepting all I’ve done and said
I want to stand and stare again
‘Til there’s nothing left out, oh whoa whoa
It remains there in your eyes
Whatever comes and goes
Oh, it’s in your eyes

REACHING FOR THE TEACHING?

Tomorrow, 27th  January 2015,  marks four years since Steve breathed out, and his body decided it couldn’t be doing with the breathing in thing any longer bless him.

Each year I have been coming into this blog and marking the sad occasion with a post. Please take a few moments if you will to read the poems for Steve, and see the photos of my lovely man who still inspires me to write. A man who gave Huntington’s disease (HD) a good fight and refused to give up!

 Blog post  January 2012 –  ‘Moving’ pictures 

 Blog post January 2013 – Ring a Ring o’ Roses

 Blog post January 2014 – INSPIRATION NOT FRUSTRATION

Another New Year has run up behind me and ambushed me. More challenges and opportunities beckon that I somehow have to make sense of.

In a previous blog entry I wrote about having found work again. Sadly the job folded which was a bit of a surprise to say the least. However, a few days later I got an intriguing text from my housing association out of the blue.

The text asked residents to make contact if they were interested in free training by way of taking NCFE  Level 2 Award in Support Work in Schools.

I decided to check it out and have been lucky enough to secure a place on the ten week course which is being held locally.

The timing of the text, or should that be the timing of the job going as I would have ignored it if still in full-time work, does make me wonder if it was meant to be? Whilst I can’t be sure if a teaching support pathway is right for me as a long term option, it is an interesting opportunity. We shall see…

To mark four years passing, I have written another poem for Steve at the end of this post and inserted more photos. The photos are slotted in within one of the blog entries I wrote in June 2008 for ‘Pimp my Blog’. I’ve extracted a part from that blog entry which refers to a Llandudno trip. My previous post DEDICATION NOT MEDICATION touched on our love of Llandudno.

Apart from using it as an excuse to show photos in context of my lovely man again, I find it sad and comforting at the same time that back in June 2008 I was so in awe of Steve’s strength and determination that I felt compelled to write and photograph examples.

The photos were originally taken in secret as it were. Basically I didn’t want Steve to stop what he was doing and know I was watching/taking shots of him lest he become self-conscious or stop to pose bless him.

I managed to capture Steve’s fine motor skills. He holds a pot of coins in one hand; needs to take out a small coin from a tub of coins; needs to reach across to the machine standing still and finely place the coin into a very small slot. And all that with precision timing if trying to get maximum impact for the coins to fall into the win tray. He was reaching and teaching his body and brain and I’d hoped was also teaching the so called experts a thing or too about determination and hope.

Apart from wanting to take photos for my own purpose, I wanted to show Steve’s neurologist that creatine was giving him stamina enough fight his condition. I do believe creatine gave Steve a physical and mental boost but sadly a study has since suggested there are no benefits of creatine. I wish that more had been done in consultation with patients and carers to look at how much benefit it could give to those with HD. The research laboratory is NOT the only lab available for observations.

I had started Steve on creatine just a couple of months earlier after he had collapsed and been admitted to hospital having had a chest infection. His poor body was so weak where HD had made him fragile. I had read about creatine on-line and thought it would be worth a try.

After consulting with Steve’s GP and neurologist, and on the basis I would make regular checks and observations on side effects (including having regular blood checks) I was basically told I could try it as there was nothing to lose (except for a lot of our own money as it is not prescribed on the NHS). In essence I felt they were paying lip service to me as no one during, or since, has ever asked how we got on with using it.

I have also given a link HERE to a new YouTube (slideshow) video which shows more photos of Steve’s concentration, dexterity and stamina during that trip. He looks a bit tired towards the end but he was amazing given everything taken into consideration.

Steve is playing on his favourite penny arcade game, and mine too if I am honest. It was lovely when my sister called me one day and said to switch the television on. There was a game on television she said Steve would have loved called Tipping Point. I love it when people remember Steve to me and she was right. One of our must see shows 🙂   Maybe I will apply to go on it one day?

Adapted from PIMP MY BLOG © Trish Dainton 2008

Week 8 – Pooh Sticks

Saturday 21st June to Friday 27th June 2008

 The evening went well with Hubs eating for England and I didn’t have too many drinks as we had to get up even earlier the next day. Thursday was our day for a coach trip and, having little choice as we’d done them all before, we decided to opt for Caernafon Castle which meant a long day trip.

We got to the coach stop after a slow walk and Hubs sat a while on a bench waiting for the coach to turn up. I was quietly confident we wouldn’t have our usual fiasco of people being polite when I was trying to tell them to get off before us to give us time and space. You know the sort of thing…”You go… No, you go… No you go…”. I just hold back on saying “For f**k’s sake just get off will you and leave us to take our time!”

The reason I thought we’d be fine this time was I’d already booked the seats weeks before and got seats 1 and 2 which meant people would be happy to pile off ahead of us. Just a pity we couldn’t have booked seats 0 and 0 as Hubs still managed to fall on his bum where going past the first seats I was actually trying to steer him into and falling.

The coach was full of elderly passengers with walking sticks and dodgy hip replacements so we were not the only ones taking a slow pace but we didn’t see any of the sites really. We opted to stay in the [Pieces of Ate] cafe  next to the coach instead of seeing the Castle, and on the coach itself apart from potty stops as the weather was crap.

16 Caernafon

Friday was our last day in Welsh Wales and I’d promised Hubs we would go on the Pier and play the arcade machines. It’s a long Pier, and the machines are right at the end of it, but there are plenty of benches on it and it makes for a good walk.

Every visit I wonder how Hubs will cope with playing his favourite game. The cakewalk type game where you place coins in and they drop down to then push other coins which cascade down. With skill and luck the coins fall over the edge and into the winnings tray below

I was trying not to let him notice but I watched in awe as Hubs managed to hold every individual coin and place it in the very small slot then watch patiently as it went into its place, and either knocked off coins or stuck there having landed on top of another. It took him a lot of time, and the concentration and effort it must have taken him even just to stand up/stand still that long was etched on his face at times. He only dropped one coin on the floor; such was his triumph over adversity in itself.

26 Llandudno

I had been at a nearby machine. I’d been playing for so long and I’d won a fair bit and put it all back, except for a few coins I’d sneak in Steve’s winning tray when looking at  his winnings for him. He was well proud of himself when I scooped out about 20 coins from the tray after he’d put in 50 (£1 of 2 pence coins)

After coffee and biscuits in the little cafe’ next door, and a stop at the disabled loo (THANK GOD FOR RADAR KEYS!!) we headed back to the hotel and had a rest in the bar before our cab was due. On Tuesday we had needed to get a cab back to the hotel from the shops as it was clear Hubs was flagging. By chance I found a cab which was adapted for the disabled so I made sure to get the driver’s details for the trip back to the station.

Despite arriving an hour early there was a panic by the assistants to get us on a packed train and we were put in the wrong seats having been told our seats were not vacant. It was not until halfway home, when I struggled to get Hubs along the carriage to the loo, that I noticed our names over the two vacant seats right by the door. It turned out there had been a misprint on our seat reservations issued with the tickets.

30 Llandudno

Once finally settled in our proper seats I enjoyed the rest of the journey and with assistance at the other end being good, and the ComCab being easy to get, we arrived home safe, sound and happy with our trip. Before leaving the hotel I had booked us a room again for November for our 20th anniversary. It’s sad to think I may be going back there alone one day with a little pill box of some ashes to scatter off the Pier.

Poem for Steve

My Admiration!

Another year has fluttered by;

Another anniversary.

As poems and my blogs suggest,

We’re still at home, your ghost and me.

 

Some would say a change is needed;

Some would say an exorcism,

Casting out the need to keep you,

In my thoughts, my life, my prison.

 

I would say I’m very happy;

I would say my life’s not stressed,

Having time for my reflection,

On a life which feels so blessed.

 

Looking back on posts and poems,

In the book and those in here,

Makes me raise a heartfelt smile;

Makes me shed a heartfelt tear.

 

Reading back the blogs I’ve written,

Goes to show how much I’d care;

I record your strength and struggles,

In the words I chose to share.

 

The fact I am now writing this,

Expressing life in poetry,

Just goes to show the mark you made.

In those few years you shared with me.

 

Most of all I hope my words,

Whatever form or situation,

Reach your ears and let you know,

You still deserve my admiration!

DEDICATION NOT MEDICATION

Steve and Trish 15 croppedToday (25TH November 2014) would have been mine and Steve’s 26th Wedding Anniversary.

Last year I posted up SILVER RINGS & SPARKLING THINGS to commemorate what would have been our Silver Wedding Anniversary.

Still continuing on the  theme of Steve’s lovely blue eyes, and my penchant for blue topaz jewellery to echo my engagement ring, I’ve used it as an excuse to buy myself a set of beautiful blue topaz earrings and matching necklace. The necklace will be put away for Christmas. Don’t worry… For Steve’s element I bought Queen, Deep Cuts Volume 1 CD and a Crystal Palace FC DVD.

I purchased the jewellery on-line from Macy’s. Steve and I never did get to Macy’s in New York which was on our Bucket List. We had hoped to do a trip to New York and Las Vegas but it wasn’t to be. We did, however, visit Macy’s Store in Boston in 2001.

Little did I know it at the time but one resident of Boston would be instrumental in helping me cope with our future and, in particular, my struggles in caring for someone with Huntington’s disease (HD). I’m talking about a guy called Jimmy Pollard.

Jimmy is a legend in HD circles. His background is in managing care facilities for those with neurological conditions, especially HD. He has written several books on care-giving including the book ‘Hurry Up and Wait’  which I have mentioned in my own book and in previously in my blog. Hurry Up and Wait gave me a better understanding of, and empathy with, those with the illness. In essence it was like an epiphany for me.

Some thirteen years after mine and Steve’s visit to Boston I was lucky enough to be able to spend time with Jimmy in our own home town of London. It was good to be able to personally thank him for his guidance and his part in helping inspire me to write Curse in verse and Much More Worse.

JP CiV

Jimmy was in the UK for various presentations, including taking part in the Huntington’s Disease Associations’ AGM/Family Conference Weekend. We hooked up in London and I was glad to take him to a part of Town he had not been to before but had heard about in the songs penned by some of the British bands he liked – The Rolling Stones and The Kinks.

I took him down The Kings Road, Chelsea. A twist on the usual London sight-seeing tour and I took him on a London Bus. We bagged the front seats on the top deck which was a great way to show off various sights along the route. He probably got sick though of my pointing out places I have worked at along Victoria Street and Buckingham Palace Road though lol.

We spent a lovely time  in The Cadogan Arms (where to photo above was taken)  and The Chelsea Potter chatting like old friends about how important it is to not lose sight of the here and now when it comes to Huntington’s.

Better medications for the diverse symptoms of such a complex disease are being developed. Ultimately a cure may be on its way by switching off the rogue gene that causes the changes. However, that seems a long way off for those in the throes of HD right now.

What needs to be focussed on in the shorter term is support and education for family carers, and the caring professionals who are at the front-line in the battle against HD. Dedication being much more effective than medication as things stand.

Where I believe Jimmy’s book resonates with those caring for someone with HD, and I hope my own book and this blog reflects also, is that a lot is about empathy and putting yourself into the mindset of someone with a neurological condition.

During our chat I got very emotional when recounting two particular moments where I believe I experienced a little of what Steve had been going through, and what would also turn out to be a little insight into HD. The first was before Steve was diagnosed. The second was after he had died.

Interestingly, the first episode was on our Boston holiday in 2001 . Steve was showing subtle signs of the illness but it was hard to pinpoint if it could be HD or simply less sinister things. Steve was not formally diagnosed until 2005 as we both plodded along still hoping he didn’t have the illness.

Being on holiday, Steve and I liked to go shopping and we strolled around one of the Malls. We stumbled across a shop that specialised in items for left-handed people. I am right-handed but Steve was left-handed so we strolled on in.

There were probably similar stores back in the UK but neither of us had come across one before. The internet wasn’t as big a global marketplace at that point so we were amazed to find such a range existed!

Steve had told me many a story about how, as a child, he was forced to use his right hand as if being left-handed was something to be ashamed of! It could even have been perceived akin to being disabled in a world designed for right-handed people. Indeed, during the years of denial Steve would often say “it’s because I’m left-handed” when trying to do things that would be clumsy.

Whilst browsing around the shop I picked up a pair of left-handed scissors and attempted to cut a piece of card that was laid out for cutting. It shocked me how awkward the loops for my fingers felt in my right hand. When I tried to cut the card I couldn’t!

It was as if the blades were sweeping across the card and I could not get the pressure points right to bear down on the card to make the cut. I tried for a little while even swapping to my clumsy left hand but felt too disorientated and weak to comfortably use them. In the end I gave up. Steve tried and made a cut with ease.

 Cake cutInstead of doing my usual and making a joke of it “show-off” I would say to mask my embarrassment, what popped into my mind was this.

What if I had just experienced how Steve felt when trying to tackle stuff?  With it feeling awkward and unnatural. Is this how life had been for Steve? And what if we extended that to HD? Regardless of being right or left- handed, when suddenly doing the simplest of tasks feels different and too challenging to tackle or complete?

 It gave me a lot more respect for Steve. I’d assumed he was being clumsy or putting it on some of the time. I’d laugh at the way he would look so focussed and struggled when using a tool such as a screwdriver not thinking about the threads being opposite to the way he would naturally want to turn the handle. The tongue poking out of the side of his mouth in concentration.

Looking at my wedding  photos I thought he looked sweet when we were trying to cut the cake with its very thick Royal icing to serve up to guests. The cake knife was standard right-handed knife. Bless him… He was trying so hard…

I did try to find a link to the store to put in here. There are plenty of places on-line but I couldn’t pin down the place itself. I did find a mention of what I assume is the store on a Left-hand site under a Teacher’s Forum. I’ve reproduced it below as it seems like others felt the same way as Steve may have for so many years.

We did buy some left-handed items to take home including scissors and a left handed ruler. Yes there is such a thing! The scissors were before the 9/11 bombings so we got them through in our luggage but I was a bit apprehensive had I been asked to explain them at a baggage check.

I’ve sewed my clothes since I was 10 years old and made drapes with my Mother. Would you believe that I was in my late 30’s before I was given left-handed scissors????? All those years, I thought cutting material was just a difficult chore!! Now I have left-handed scissors in every room.

On a trip to Boston, I found a left-handed store and went crazy. I bought myself a left-handed potato peeler!!! Absolute heaven!!! What a difference!!

I hope all parents are aware of the difficulties of a left-handed child in a right-handed world. Imagine how a pair of scissors made my world so much easier and I had to wait until I was an adult to experience it????

Cited from a Teacher Training Forum area of the website of Anything Left Handed

The second episode was when I was looking at a few snaps of Steve on one of our trips to Wales. We were staying in Llandudno for a few days and had booked a coach trip to Anglesey. The trip included a visit to the famous railway station with the very long name of of Llanfairpwllgwyngyllgogerychwyrndrobwllllantysiliogogogoch.

I used to make Steve laugh by saying “Clan Vwire Pwull”. I would then mumble a little bit of incoherent noise and say quickly “Go Go Gok”. It amused Steve that I used to try and that I sounded so silly.

60 LlandudnoWhilst looking at the photos, which came up on the digital frame, I said out loud “Clan Vwire Pwull”. It made me cry. Not just the usual grief and sadness of missing Steve’s smile and laugh in response, but a thought/memory popped into my head. It was recognition of Steve’s own struggle with speech as time went by.

I became acutely self-conscious of how my tongue had felt so wrong in my mouth as I tried to say the place name. My mouth had distended and I there seemed to be an excess of saliva which I needed to swallow.

I also thought back to how, with it being too hard to pronounce, I would cut out the middle bit where I had given up on even trying that part. For the last bit (the “Go go Gok” bit) I would say it in quite a guttural way. Not just taking the proverbial out of what is actually a beautiful language. It was a bit like the last part of a run and sprinting to the finish line, practically throwing myself at the finishing tape with relief.

As with the left-handed scenario, when applying it to HD it got me thinking about how even the most simplest of words could have seemed like an uphill struggle. The equivalent of trying to read and say Llanfairpwllgwyngyllgogerychwyrndrobwllllantysiliogogogoch when communicating even the simplest of words and phrases.

Once again that sense of guilt. Things feeling alien and unnatural with the body and brain not wanting to work the way it should and yet I and others not comprehending the effort and frustration.

Who could blame Steve for limiting his words, or parts of words to the bare minimum? Who could blame Steve for wanting to get a word out with gusto? Who could blame Steve for wanting to control the flow of excess saliva where the swallow reflex was compromised by muscle weakness and natural control and rhythm?

When recounting this to Jimmy I mentioned how most people, unless they were fluent in the Welsh language of course, would also have problems with that particular place name. If the word were shown to a group of people I expect some would try it but fail. Many would not even try.

If taking the Welsh place name for an exercise for carers to help understand the HD brain it could be tackled bit-by-bit. Broken down into segments, and given with an explanation of pronunciation (see more below) it could be repeated again and again until able to be read the whole way through. That would be a way of getting through the word with practice.

The exercise would also demonstrate there would need to be a lot of practice and much patience afforded by both the speaker and the listener. Apart from the perseveration angle there would be the tendency to switch off listening by the speaker and audience . The natural flow of the word being disjointed not helping.

When looking for a website to link to in here, which would break up the word at the best natural points, I came across a video on YouTube. It added another dimension to not being able to pronounce the name and speaking in general.

The video teaches pronunciation by using a song. See HERE  I couldn’t possibly say I could ever become fluent as a result of singing along but it was a lot easier to pronounce and remember when singing!

In a previous post, Brainwaves for the Airwaves, I talk about the power of music in helping tap into Steve’s very core and how it helped our quality of life. I wrote the poem in it ‘The Magic of Music’ for Steve. There is clear evidence that music has a unique effect on people. For many years charities like Nordoff Robbins have been advocating using music and singing in therapy, not just for children but for vulnerable adults.

Many papers have been written on the benefits of singing in for people with neurological conditions, and also those with aphasia .

Melodic Intonation Therapy (MIT) is a method used with remarkable outcomes and an example of use for stroke patients can be seen HERE. More detail on how it works can be read HERE

I’ve noted most papers; books and videos focus on treatment in Stroke and Parkinson’s alongside stuttering; autism and tourettes. Sadly I could not find anything mentioning HD.

It has to be said Steve did not strictly have aphasia as far as I could tell but then no one ever really explained what was going on or all the different types of speech problems there were. I would open letters which were the copies to Steve’s doctor and read things like this:

Mr Dainton presents with a mild-moderate oral-pharyngeal dysphagia and a moderate-severe perkinetic Dysthargia.

and this:

Jaw, face, lips and tongue affected by chorea….Spontaneous speech was markedly reduced and clearly effortful due to chorea…. Swallow …. Informal assessment indicated a slightly prolonged oral phase and adequate bolus formation and control

and this:

Stephen presents with an uncoordinated and prolonged oral stage during swallowing. He has difficulty in creating and manipulating a bolus, and transferring it smoothly to the back of the mouth ready for swallowing. His pharyngeal stage of swallow (swallow reflex) appears disorganised, with some gulping and occasional delay. For fluids the timing and coordination looked improved and swifter. …. his coughing was short lived and appeared to be of adequate strength to clear his airway…

I would then have to look up the words on the internet as it was difficult to speak to such busy people and by the time the next appointment was due…

I also felt it was taken for granted that his communication was not a priority in the scheme of things where I would always be expected to act as his translator come communicator if needing to deal with the outside world.

The third example above is considerate of using bracketed explanations, and was written by a very good Speech and Language Therapist (SLT) who was arranged through our Community Rehabilitation Matron. The problem I have when reading it back is the emphasis was on the feeding aspects, not verbal communication.

Communication boards were discussed but, at least from my way of thinking, that was taking it for granted that Steve would lose control of verbal communication and not so much dexterity. How frustrating to have an array of choices put in front of you and the lack of steadiness to be able to pinpoint; or even more worse being seen to point to the wrong thing thus causing miscommunication. We did manage to get a Lightwriter after a fashion but it wasn’t really suitable.

There is a lot more on the market now for non-verbal communication these days. I wish I had been able to have new technology and known of organisations such as Talking Mats when Steve was alive but I just saw a range of basic/rigid options back then.

I can’t help thinking I should have looked further into other types of help. Maybe vocal and physical exercising of the mouth muscles would have kept his speech intact longer had we been offered other therapies?

Steve never totally lost the ability to speak but it was clearly hard for him, and my listening skills were tested to the limit. Needless to say there were times communication got confused and angry on both our parts.

Tiredness and agitation also played a part in Steve’s general HD progression. It could perhaps be argued therapy, had it been offered, may have led to another area of feeling inadequate and done more harm than good. On that basis, I would argue for more advice and options at an early symptomatic or even pre-symptomatic stage.

It’s such a shame we were not encouraged to join a choir as part of the introduction to learning to combat HD for as long as possible. Vocal exercise; communal enrichment and something we could have shared too at home as a couple.

I appreciate some people reading this would wince at the thought of joining a choir or taking singing lessons. As for trying to get someone in denial of HD to do something proactive you could be on a loser before you even start. Thinking back to me and Steve it could have been worth a try.

Steve was actually in a choir as a child. I mentioned in The Eulogy Steve’s appearance on the television in the choir when  Songs of Praise came to his locality.

Noel Tredinnick was in fact Steve’s school master  at Langley Park Boys School  in Beckenham.  He got Steve involved in the choir so Steve would always be excited watching Noel on the television.

Possibly something in the Beckenham air but another Welsh sounding named young man hailed from down the road from Steve’s home. A certain David Jones. People probably know him better by the name of David Bowie.

Would David have walked  past members of Steve’s family and thought there could be a drunk person because of the unsteadiness? I can’t answer that question.

From reading Paul Trynka’s book ‘Starman’ though it does suggest for all David’s wonderful musical talent and imagination he was just as oblivious to HD as the average man on the street. What makes it even sadder is David was no stranger to mental illness where his half-brother Terry Burns suffered from schizophrenia.

In Trynka’s book, Chapter 17 appropriately titled ‘I Am Not a Freak’ he writes:

 Simon House‘s memories of the tour are much darker, for reasons unconnected with David. The violinist’s partner, Sue, was ill with Huntington’s disease. Her plight was all the more sad, for she wouldn’t acknowledge the problem which eventually left her hospitalised, and insisted on joining the tour. The illness manifests itself in varying guises;in her case, she’d act as if aggressive or drunk, causing so much racket in Tokyo that the hotel called the police. David, not unreasonably, got upset if he saw Sue while on stage. It made House feel like an outcast. Worse, Bowie didn’t address the issue directly so House couldn’t even explain Sue’s illness first-hand. In those situations, as with most issues, it was Carlos Alomar who brought an almost spiritual, soothing attitude. Carlos is a psychologist, a spiritualist, one of the most charming people in the world’, says House. We got on really well; I wouldn’t have enjoyed the tour without him. He was the one who would distract from the problems.’

I was actually in a choir myself called ‘Young Singers of London’ and I think we probably had more training in the English language from choir masters than we  got at school at times.

Add to that a touch of Latin and German when translations were given of the beautiful choral songs we sang. You can even add a touch of Polish for me where my choir sang a beautiful Polish Lullaby at a Christmas event once Lulajze Jezuniu. Well it is only one month until Christmas after all… And that’s not the choir either of us were in just in case anyone thought of looking out for us lol.

Talking of translation,. I wrote at the beginning of this section we went to Llandudno. I’m guessing you may have already lost the plot by now where I have been rambling on but I just thought I’d add another area of brain to mouth comprehension.

Did any of you read that as Lan Dud Know?

I mentioned above I pronounce ‘LLan’ as “Clan”. I do that because that’s how I hear it when spoken by the Welsh. I could be wrong, I could be close, but that’s just how I hear it. But what about the ‘dud’ part?

On one of our first Llandudno trips the tour guide explained that it Wales they pronounce the letter ‘U’ as we English would the letter ‘I’. Next time I saw the word my brain connected the pronunciation better.  See HERE.

Maybe there is a lesson in there somewhere that if we understand why a person may be making a wrong assumption we simply re-term it to help make sense.

There’s a connection with the Welsh language and and singing ideas. Welsh being the Land of Song and famed for their Male Voice Choirs.

Perhaps Steve and I should have moved to Wales in the early days. Not such a random thought… On Steve’s mum’s side of the family (the non-HD gene pool) there are Welsh relatives. Mainly in and around Abergavveny.

I understand many years ago one of Steve’s relatives played the church organ at a certain local celebrity couples’ wedding. The wedding between Martyn Lewis and Liz Carse. If I recall right her name was Gladys Slattery but Steve always called her as “Ah Darr”.

Those in UK HD circles may recognise Martyn’s name not just from his ITN/BBC Newscaster days. Martyn has been a campaigner for Huntington’s disease. Turns out his wife had it! He talks a little of his circumstances HERE and HERE. 

Small world/globe eh?

This neatly brings us back full circle  to my original reason for wanting to come in and blog today.

From mine and Steve’s 26th wedding anniversary; to swapping ideas with Jimmy Pollard on empathy for those with HD; to how music may help; to how the language may need to be looked at differently; to how Steve’s family have Welsh roots; to tenuous wedding links to Martyn Lewis whose wife had HD; and back to mine and Steve’s own wedding this very day 26 years ago.

I will end on a poem and a link to YouTube. One day I will get the hang of sorting better thumbnails. Scroll to the bottom and you may see where I am coming from.

The YouTube is another set of photos of us recycled as ever. It lasts 8 minutes so I don’t suppose anyone will be interested. Thing is, once I selected one snap I wanted another, and another, and another.

I suppose I have done the slideshow, and indeed this blog, for myself more than others. Whatever the case, I do hope if anyone reads these blogs they get something out them be it HD related, grief related or just good old fashioned human interest story.

 

Another year has come and gone,

My last post covered ‘Moving On’.

Not that I could ever leave,

Or walk away from how I grieve.

 

My mind’s still finding different ways,

Of making sense of those last days;

Of making sense of those last years;

Of realising all our fears.

 

There’s lots of things I didn’t know.

Emotions that I didn’t show.

There were the times when words like “Hate!”,

Were all we could articulate.

 

I still reflect on time with you,

And what I did and didn’t do.

Of times I should have held my tongue;

Of things that cannot be undone.

 

The underlying deep frustration,

Underpinning conversation.

Gentle days were with us too,

Articulating “I love you”.

 

The home was filled with others’ voices,

Singing songs through music choices.

I still have music in the air,

But wish that you were here to share.

 

I took the ring and said “I do”?

Do I regret I saw it through?

I now have time where I reflect,

On how much did HD affect?

 

Familiar songs bring back to me,

The good times how it used to be.

They take me back to when we met,

You stayed that man, I’ve no regret.

 

GETTING ON, NOT MOVING ON

Today (27th July 2014) marks 3 and a half years since Steve beat Huntington’s disease (HD) by opting out. With every day that goes by, something else happens in the world that makes me realise that, for all the grief of witnessing HD and losing Steve, I feel blessed to have been here with him when he actually died.

The news is filled with reports about the ‘shot down’ flight over the Ukraine – MH17. I am not sure what is worse… The missing flight MH370 with no trace and perhaps still hope for the families yet no closure; or MH17 with its wreckage and shocking pictures posted up on social and other media. That’s not including all the media coverage where News reports around the world spoke of looting the victims, and sparse consideration and respect for their bodies with being left in situ so long, or for their belongings.

Sadly the relatives of the MH370 and MH17 victims will never be able to have the chance to say goodbye as I did with Steve. Aware that time was growing short, and the peace of being together at home. Not that I have ever really said goodbye.

Even when I leave the home now, I say “tatty bye for the moment. Be back soon as possible sweetheart”. I rush home from places and make sure I acknowledge Steve’s casket and photos as soon as I am in. He’s still living at home as far as I am concerned.

In terms of changes in my circumstances over this last three and a half years, and I truly cannot  get my head around how I am still existing so long after Steve’s death, I take comfort in not being forced to move on physically or emotionally.

I’m still in the same flat. I don’t technically need a two bedroom flat any more. A one Bed flat would certainly be a lot cheaper where I pay the full rent and Council Tax from my own purse.

However, when I looked at a few one bedroom flats the savings in cost was outweighed by the emotional cost of moving. I even viewed them with trying to work out how I could fit into a one bed flat Steve’s sleepLow bed and chairs among all the other furniture we have. I couldn’t think of getting rid of anything.

The biggest change in my personal circumstances is that I very recently started a permanent full-time job. The job is fairly local. It’s in a Buying Department; it’s administration which suits me fine.

I’ve mentioned in previous blogs how fortunate I feel to have so many photos of Steve/Steve and me. I have more good memories of our time than bad and they continue to be built upon. That said, something usually reduces me to tears in private nearly every day. It’s verging on masochism where I feel guilty if I don’t cry at least once a day. As if to feel the wound is healed and not painful any more.

The blog entry and poem I did for July 2011 – For Steve is still very apt

So life carries on and there’s good times and bad,

As the wound of grief heals it gets less and less sad,

And the ghost of your illness walks further away,

But I call to the ghost and I beg it to stay,

Being at work now, and needing to get up at stupid O’clock to fit in all the rituals like watching our slideshows when I get up and before I leave the home does make me sacrifice one area of our life… Television.

I decided I was not going to stay up to watch the opening of the Commonwealth Games. I think Steve was relieved as it featured John Barrowman. We both went right off him when, after being so great in Dr Who, he seemed to be on EVERYTHING and we got sick of the sight of him!

I have since seen the highlights of the Opening Ceremony and I don’t think I missed much (Sorry Scotland but I’m still raving about the London Olympics).

This day 2012 was the Opening of The London Olympics and my blog The Real Olympians reflected that. I still think those with Huntington’s show strength of body; brain capacity and handling emotional struggles which deserve a Gold Medal.

I also decided to stay up late only for games in The World Cup where England were featured. Lots of early nights there then lol.

England’s not getting past the first stage reminded me of the last World Cup. We fared better that time but there was a beautifully coherent moment with Steve at Park House  Hotel which I just had to share within a post on the Huntington’s Disease Association (HDA) Message Board.

At Park House the pace was slower; the care and hotel staff built up good relations with us and had time to talk to us. It would bring Steve out of his shell even more and he would be like a new man each time we had a break there.

At the bottom of a Thread asking about  Personality Changes I was able to demonstrate the person inside does not always lose everything. Steve’s comment when being asked about England’s chances in the 2010 World Cup he said ‘They are bound to lose”.

While we are on the subject of football, my July 2013 Blog  Playing for laughs mentions my adopted love of Crystal Palace Football Club aka The Eagles. They managed to silence all the critics after a bit of a rocky start and return to play in the Barclays Premier League in a few weeks time.

I still donate to Steve’s Justgiving Page on the basis of £2 per league goal; £5 per cup match goal and £10 per cup final goal. Donations from me and others currently stand at £1,020.30 which  goes to the HDA.

I don’t normally donate for the pre-season friendlies but probably will do this year once I have the final total. Based on £1 per goal, I am due to donate £16 so far. We won 13-1 against GAK Graz; drew 2-2 against the Columbus Crew and won 1-0 against the Philadelphia Union although it was an own goal by the opponents that helped us win.

Another area of Steve’s life with HD, where I truly feel external factors penetrated the very core of his being, was music. My blog entry Brainwaves for the airwaves  refers to how music had an overwhelming effect on Steve. I have been pleased to see how much those in the medical and care profession are taking seriously the influence of music.

On the HDA website they are currently advertising a HD Questionnaire which is part of a thesis being done on the emotional impact of music in those with HD. I am never sure who reads this blog, if indeed anyone des for that matter, but if you live in London or the Home Counties I would urge you to get in touch with Shirin to see if you could be of help with her thesis.

I am closing this post on a new poem for Steve and some photos.

The first photo is of Steve sitting on a heavy leather bucket chair that I got him. He’s by the table his casket is now on although the table is in another part of our lounge (by my PC)

The second photo is of Steve in bed during the final days of his life. He is very weary and weak bless him

The third is of the chair he died in. Ruby is sitting in it guarding a photo but I now have Ruby and Ruby Tuesday (don’t ask) sitting in it with Mr Leopard. A cuddly toy Amur Leopard which came with the WWF adoption pack. Steve would have wanted to help the Amurs where they are so endangered.

I have also put in a Queen song just below. Like many people, I would not be able to pick out my favourite song of all time. It changes from one day to the next. It’s fair to say Steve was the same too but Queen will always be his top Group.

I recall we were having a night of playing records when Steve said “I love this song”. The song was ‘Love of my life’. I was taken aback as I’d never actually heard that song before. It’s possibly one of the most beautiful songs on the planet. But then Steve was, and is, one of the most beautiful of people…

Love of my Life – Queen

 

Poem for Steve… The Love of my Life

 

I’ve looked at flats and seen the rent,

It’s true they’d mean less money spent,

But every contact left its trace,

In every fibre of THIS place.

The flat’s I’ve seen, to move felt wrong,

Don’t worry, I’m not Moving On.

 

I’ll move up to your chair and bed,

Caress the place you laid your head,

Imagine that you’re still asleep,

And out of room I’ll quietly creep.

 The flat’s intact, there’s nothing gone,

Don’t worry, I’m not Moving On.

 

I sit and watch a TV show,

And think of how you’d love it so.

The radio reminds me too,

Of music that was loved by you.

 I’ll still sing to your favourite song,

Don’t worry, I’m not moving on.

 

Converted to an Eagles Fan,

I follow closely all I can.

On Palace Player or TV,

I cheer and curse the Referee.

 Proud to add to Palace throng,

Don’t worry, I’m not moving on.

 

 I’ve found a job that’s right for me,

It’s at a local company.

It does feel right to work again,

Though leaving you still causes pain.

 I’ll be right back, I won’t be long,

Don’t worry, I’m not Moving On.

 

When waking up, on goes PC,

I watch slideshows of you and me.

If meeting someone, they can wait,

I do not care if I am late.

 The visuals and the words  belong,

 Don’t worry, I’m not moving on.

 

We’ll chat, and laugh and share some views,

I’ll tell you of my latest news.

You’ll send me signs you’re still around,

An image or familiar sound.

 I feel your presence, still so strong,

Don’t worry, WE’RE not moving on.

 

568e694699