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Today (14th May 2018) would have been Steve’s 57th birthday. As ever, I have come in to mark the day with a new blog entry and poem.
My previous birthday blogs can be seen here:
May 2011 – I MAY REGRET THIS…
May 2012 – TOASTING & BOASTING
May 2013 – ONE DOSE OF TWEETMENT OR TWO?
May 2014 – THE SHOW MUST GO ON
May 2015 – THE FAIRNESS OF AWARENESS
May 2016 – POETRY IN EMOTION
Twenty years ago today, Steve and I were celebrating his 37th birthday on-board The Oriana Cruise Ship. We were actually docked in Barcelona on his birthday and we had spent the day with fellow passengers on a shore excursion. We visited the Town Centre taking in the sites such as Gaudi’s Cathedral and Spanish village. That evening at dinner, as they do on cruises, the restaurant made a fuss of all those with birthdays. It was a fabulous day and night!
Barcelona was the mid-trip stop. The cruise had already taken us to St Tropez. After Barcelona we arrived in Florence. We had seen many pictures of the buildings in Florence but none of them had prepared us for just how stunningly beautiful the architecture was in real life.
Unlike in London, where pollution takes its toll on many historic buildings, strict transport bans in the Centre of Florence meant the beautiful coloured marble of buildings like The Duomo Cathedral and the magnificent bronze relief doors of The Baptistery were truly a sight to behold!
After an all too brief tour of Florence, our party took a coach ride to Pisa. We didn’t actually have time to get off the coach and walk around Pisa itself. Photos of the famous Leaning Tower were taken through the coach window, so sadly we didn’t get to do the obligatory photo of one of us trying to lean too so as to make it look straight. We had been delayed leaving Florence and were now in a rush to catch a plane back to London.
At the start of our holiday we had arrived to board The Oriana in style. From London Victoria Station we took The Orient Express to Southampton enjoying a champagne lunch. As part of the package, we would be returning home in even more style. Aboard Concorde no less!
I booked a car and driver to pick us up from Heathrow and take us back to Erith. I couldn’t bear the thought of all that luxury being undone by the usual challenges of travelling on public transport. Feel free to call me a snob.
With the Huntington’s disease (HD) sword of Damocles hanging over Steve’s head, we had decided very early on that we were going to make the most of every day. Given late thirties/early forties as being the typical age for starting to develop HD symptoms, we planned packing in as much as possible before hitting forty.
Both Steve and I were very saddened when Concorde was taken out of service in 2003. We were so very grateful that we got the chance to fly on her. As I have said in previous blogs, so many people put off stuff until tomorrow. For some, tomorrow never comes.
Forward supersonic fast to 22 November 2017. I was sitting at my computer with my morning cuppa and logged on to the BBC News Website. Among the story links on screen there was one on Concorde. Forty years ago, on 22 November 1977, Concorde made her first commercial flight between London and New York. The linked article was entitled – Concorde stories: Remembering the ‘pocket rocket’. The link to the article is HERE.
I clicked on the link and started reading. I scrolled down the screen enjoying the shared experiences. Then, to my utter amazement, I saw it actually included an anecdote I had shared on another website a long while back. Mine and Steve’s anecdote had been chosen to be used within the BBC article under the heading ‘The memories are precious’.
It was a wonderful surprise! It was just by chance that I found it where not working that morning and having time to browse. An early anniversary present from Steve no doubt.
I am sure you have guessed by now that the above covered ‘Supersonic flights’. So what of the ‘Human Rights’ reference in the blog title?
In my previous blog I mentioned getting a name check in the House of Commons (HC). No, I have not been involved in chaining myself to the railings of HC. Nor have I been pulled up for allowing Pinky Sybil to use a lamppost opposite. Check out my #SybilOnTour #LondonUnderground video HERE if you have not already seen it and know where I am coming from.
The background to the HC mention is this…
Back in January, January 3rd to be precise, I logged onto Twitter for a nosey at what’s occurring and was surprised to see a tweet from Scottish Huntington’s Association (SHA) stating this
We have succeeded in getting a Westminster Parliamentary debate around Huntington’s disease and #geneticdiscrimination on Monday January 8. Please lobby your local MP to take part and end this practice. Find out more:
The subject matter focused on being able to purchase insurance and life cover when it comes to families with a genetic link to HD. The discrimination was not news to me. Back in 2011, when compiling my book, I featured my poem ‘The Insurance Salesman’. You can read the full poem below. With many stories of families being penalised, I was angry the government had allowed HD to be singled out as a named disease for discrimination when it came to insurance.
The Insurance Salesman
In October 2000, Britain became the first nation to approve the commercial use of gene technology to allow insurers to refuse insurance cover; or to push up premiums for those born with genes that could lead to fatal conditions. HD was singled out as the only case allowed immediate discrimination because of the reliability of the test. This meant for a person having tested positive, insurers gained the right in certain circumstances to refuse to insure, or to legally load the premium to extortionate levels (300% has been cited).
So let’s take a hypothetical scenario…
Let’s say a person took the test at eighteen and tested positive. There are no signs of HD but he wanted to know if he had the gene. At twenty, he applies for cover but has to declare a positive gene result and the cost of the insurance cover reflects this. At the same time his twenty year old neighbour has also applied for cover but he does not have any record of HD in the family. That’s not to say he has no links to HD or any other potentially fatal disease, he just doesn’t know about it yet. His policy costs 100% less.
The HD+ person pays the loaded cover pricing from day one but, where HD is not an exact science, he does not become symptomatic until in his sixties (known as ‘Late Onset’). In those forty years, before symptoms appear, the person has led a HD free and health conscious life whereas his neighbour has not, and needs to draw on the cover much earlier.
It occurs to me there seems to have been no consideration of the fact that until symptoms start showing and presenting a problem, the person with the HD gene may have the gene but does not have HD itself! It’s no wonder this discrimination drives some people to delay testing where they feel it may compromise their right to be treated fairly being refused mortgage cover etc.
Please note: As at time of writing this (March 2011) The Association of British Insurers (ABI) has a Code of Conduct stipulating rules which all its Members are obliged to follow. The Code sets out clear guidance where the use of genetic information may be used in calculating cover requirements. No Insurer can request an applicant take a genetic test for consideration of insurance. Set levels of values of policies dictate whether test results can be used in the assessment.
The HDA have prepared a Fact Sheet ‘Advice on Life Assurance, Pensions, Mortgages etc.’ which is available direct from the HDA or accessed through their website.
He’s looking at the paperwork;
He’s thinking of commission.
He’ll reach his bonus target soon,
Just one more sale he’s missing.
And this signed piece of paper,
Will take him to his score.
Be home in time for dinner;
So glad he chose this door.
But hold on, wait a minute;
What’s she put on that bit?
‘Genetic testing… Huntington’s’,
He nearly has a fit!
He grabs the piece of paper;
Ignores her look so sad.
She thinks that we’ll insure her life?
The woman must be mad!
The MP taking the debate forward was Gavin Newlands. I approached his office and through exchanges with his staff by e-mail and phone I was able to highlight various elements of HD discrimination. My examples and links to examples were gratefully received.
My input must have made an impression as, in the course of his speech, Gavin mentioned me personally and referred to Steve which I was touched by.
The SHA believes that the business model that many insurance companies use to calculate risk is limited and does not collect all the genetic information available to calculate more precisely an individual’s health conditions. In other words, if we must use genetics, let us use them properly. This point is reinforced by an email that I received from Trish Dainton, whose husband sadly passed away from Huntington’s. She highlighted the unfairness of a system that can increase an individual’s premiums to ridiculously high levels on the assumption that they might have the HD gene but might not start developing the symptoms for 40-plus years.
As luck would have it, a Cabinet re-shuffle was made very shortly after the 8 January debate. When I say very shortly, I mean the very next day. My heart sunk when the Minister with ears for the matter and potential power to make change, (Stephen Barclay) would now have no further direct involvement. At least Stephen was moving to Department of Health and Social Care so the plight of those with HD would at least still be fresh in his mind.
In the shuffle, the Economic Secretary to the Treasury and City role was dealt to John Glen. Whether down to lobbying by SHA, or down to John being committed to pick up the baton from Stephen and and run with it, it was a relief to hear John kept his colleague’s promise to meet again with SHA etc. The meeting took place just a few weeks later, on 21st February. See HERE for a press article on the meeting.
In the intro of my poem I highlighted this point:
No consideration of the fact that until symptoms start showing and presenting a problem, the person with the HD gene may have the gene but does not have HD itself! Another side of that also applies. Just because HD is in the genetic makeup of the person, that doesn’t mean they would not need cover against other health conditions. As things stand, it appears companies are blinkered and using HD as an excuse to deny offering a full and fair choice of policies. John Eden, Chief Executive of SHA, wrote a marvellous piece on the issues. His article ‘Until the Penny Drops’ can be read HERE.
Surely it is a HUMAN RIGHT to be given the same options as any other person? Maybe a Human Right’s Lawyer will take it on one day. In the meantime; to the Insurance sector I would like to say:
PEOPLE WITH HD DESERVE UNDERWRITING, NOT WRITING OFF!
Here’s hoping the work done by the SHA and others now moves forward at a supersonic pace, rather than a snail’s pace as it has done in the past. One of the new jet boosters must surely be the Pandora’s Box of genetic testing for other conditions. I have a feeling it will be the start of something big.
As for other news…
I have not done much about finding Steve’s CAG count so that’s still on my list of things to complete. Everything seems to have gone quiet on ABC Vs St Georges. I dare say it will make the news headlines again at some stage.
Being a Gemini, I have another project on the go which is taking up a lot of my time at the moment. I am looking into the very interesting story of Henry (Harry) Dainton. Harry was hung at Shepton Mallet for the murder of his wife in 1891.
For quite a few years now I have been thinking about delving into the story. This year, I thought I would finally do more research. Readers of my blog will know I often refer to being drawn to things and there turning out to be a spooky serendipity element. This compulsion has turned out to be spooky too. You can get a taster in Claire Sully’s Blog entry UNCOVERING SHEPTON MALLET PRISON RAISES MORE QUESTIONS. To be continued in my next blog.
For now though…
I am going to end on a new poem and some snapshots from our May 1998 trip – Steve on Orient Express looking wonderfully smug; Steve posing in St Tropez and Steve getting ready to board Concorde. I was tempted to add loads more snaps but you get the picture (literally) At the very end there is a link to another Queen track. I am sure you can guess which one it might be.
Twenty years ago my love, we were living the dream.
Strangers looking on with envy; not all it would seem.
Spoilt, with more money than sense, I’m sure that’s what they thought.
Even friends and family, into that myth they bought.
We were buying memories; investing in the past.
A time to store experience; each trip could be our last.
I’m glad I caught your travel bug and shared such times with you.
It’s fair to say the bug was cured the day your life was through.
There’s nowhere now I’d rather be; no bucket list to write.
I’ve done all that I dreamed about; not least a Concorde flight!
How many people out there get to do what we could do?
The nightmares of HD were there, but still good dreams came true.
QUEEN – ‘DON’T STOP ME NOW’
Yes, we made a Supersonic Man out of You!
Happy Birthday Sweetheart! XXX
Today (27th January 2018) is Steve’s 7th Angelversary so I have come in to post up a new blog entry and poem in remembrance.
My previous Angelversary blogs and poems can be seen here:
2012 MOVING PICTURES
2013 RING A RING O’ ROSES
In the seven years since Steve hooked up to his angel wings there has been a lot of progress in the field of medical and biological science.
Like a lot of the Huntington’s disease (HD) Community I have been very sceptical when hearing news reports heralding a breakthrough. On December 11th 2017 however, just 17 days after I posted my last blog – REGISTRATIONS & MISCOMMUNICATIONS , there was an announcement that was hailed as ‘the biggest breakthrough in neurodegenerative diseases for 50 years.’ One of the scientists at the forefront of the research is Dr Sarah Tabrizi who I mentioned in my last blog.
A couple of the media articles are given below:
The story headlined a number of news channels and newspapers on 11th December but I was struck by the difference in numbers when the prevalence of HD was being quoted. Just looking at the text of the articles linked above we see:
The BBC state ‘About 8,500 people in the UK have Huntington’s and a further 25,000 will develop it when they are older’ . I picked up on the words ‘will develop it‘. By saying ‘will’ it suggests the 25,000 have already been tested and have proved positive for the gene. That seemed very odd as that would suggest a potential explosion of cases down the line.
Whereas, The Guardian state ‘About 10,000 people in the UK have the condition and about 25,000 are at risk.’ I was more inclined to think ‘at risk‘ was a more realistic representation.
I sought clarification from the Huntington’s Disease Association and they replied
We are quoting around 8,500 people who have the HD+ gene. Estimates from around the world suggest that there are about 3 times as many people at risk of having the gene. So it matches that around 25,000 people in the UK are at risk.
The Guardian will be relating to new mutations which will include Intermediate Alleles.
Since the Ionis announcement, we have seen a large referral rate and so have genetics depts and research sites. The HDA doesn’t know everyone who has HD in the family but we are currently working with around 5,000 people who are diagnosed with the adult form, 103 with JHD, almost 6,000 who are at risk and almost 4,000 carers. These figures are set to rise because of the HTT lowering trials.
I hope that helps to give some understanding of the figures but they are very fluid and variable.
Going back to the trial itself, it is worth noting that the new research does not herald a cure. Certainly, it is not announcing an instant cure or available treatment. We are talking the success of a very small trial involving 46 people.
In the trial, evidence was found to suggest a drug injected via a lumbar puncture procedure, affected the mutant huntingtin protein level. More importantly in drug trial terms, it seemed to show the drug was safe and well tolerated. I’ll leave it to HDBuzz to explain the science bit.
The fanfare was loud. Realistically though it is a long way off from being an automatic route within the HD treatment pathway if indeed it ever comes to being a signed off and available treatment.
Much more testing and monitoring needs to take place and only certain categories of HD patients would be suitable for next-stage trials etc. Again, it’s best that I leave it to HDBuzz to provide more detail by way of a very interesting yet very sobering ‘Ask the expert’/Questions and Answers (Q&A) report.
Whatever way you look at things, it is a very big leap forward considering so many have been treading water before now. I am, of course, very happy for those with HD or at risk who can at last see a little glint of light at the end of a very long tunnel. I would be lying though if I didn’t admit it hurts that the progress was too late for Steve.
Would I have been more excited had Steve still been alive and with me now? Unless he was still pre-symptomatic, or we had children and grandchildren at risk, I have to say the answer to that would have been “no”. That is not just based on the reality check that the HDBuzz Q&A report provides. It is based more on knowing Steve.
Back in 2008/early 2009 I had been reading about a drug called Memantine which some HD patients in the United States had been taking. The drug was actually approved for use by patients with Alzhiemers. As such, it was not normally available to people with HD and I was aware the UK seemed to be way behind in offering non-HD targeted drugs to patients.
I was not only reading the stuff you get by way of a generic sweep of the internet. I was reading the first-hand input from people on an American HD Message Board. Real people coping with HD at a post-symptomatic stage and it looked like the drug did seem to be having a positive affect from what I was reading.
Steve was due to have a check up with his Neurologist at King’s College Hospital (Movement disorders unit) in May 2009. I took the opportunity to take in print-outs on Memantine, including copies of the Message Board posts, to ask the Neurologist’s views on whether it was something worth looking into? He agreed to look at the papers and let me know his views.
I confess I was getting pretty desperate by then. In the space of a few months Steve had gone from walking, albeit unsteady and with a gait, to being totally wheelchair dependant. It was clear he was going downhill fast and I was keen to do something to halt the progression and try to wrestle back control by doing something; ANYTHING!
A few months later I sat down with Steve and spoke to him about Memantine to ask whether or not he would actually be willing to try it if the Neurologist were to say it could be prescribed? We had not had any feedback yet either direct from King’s, or by way of a patient copy letter where Steve’s doctor would be getting details of what happened when seen at the last hospital appointment.
I was keen to respect Steve’s wishes and I didn’t want him to feel any pressure/ambushed if the go ahead to prescribe was given at the next HD Clinic. I needed to explain it might not help anyway even if we did get the go ahead to use it, but maybe it would be worth a try just in case it could help him a little? I also needed to explain as far as possible the risks where it was untested for use on people with HD. No one knew if it could have negative side-effects making life even more difficult.
After explaining to Steve as best I could, I typed out and printed a sheet of paper which I placed in front of him and gave him a thick black marker pen. The note is shown below along with Steve’s response. You can just about make out a black splodge on the word ‘NO’. Steve was unable to write by then but he was able to hold a pen for a little while to make his mark bless him.
Looking at my typed note I see it is covered in liquid stains. That liquid was actually from a beaker of Guinness which I managed to spill in the bag I was holding papers in for the Clinic. Seeing stains would have made me annoyed at one stage.
The Guinness brings back vivid memories of how I would have to pack for every eventuality. Steve’s OCD around his time of needing his certain foodstuffs and drinks. I could relax more if we were held up waiting for hospital transport to get home if I had items with me just in case.
Now I smile with gratitude. Physical items which link directly back to time with Steve, be they pre or post HD symptomatic, are treasured. The Guinness stains simply remind me more vividly of our trips to hospitals and how I was able to do my best to anticipate what may be a challenge and plan accordingly. It is now evidence of a day with Steve, a tactile snap-shot in time.
In November 2009, we finally got sight of our copy of the Neurologist’s letter to the doctor.
Not a case of being lost in the post, just a very busy Neurologist. To the right is text extracted from the letter.
There we have it… The Neurologist had agreed to try Steve on a two month trial on the basis of ‘ there is probably not a lot to lose’.
Part of me was pleased the trial use of Memantine had been sanctioned but I was aware Steve had already been reluctant to try it so I would have to say “thanks but no thanks” after all.
I asked Steve again of course in the light of our now having formal sign-off. Steve’s answer was the same as before. Would it have made a difference and enhanced Steve’s quality or quantity of life? I can’t say but I am still glad that I took the idea to the experts, and more so that I took Steve’s wishes on board. Steve’s mental capacity was such that I still needed to give him credit for knowing his own mind on such an important issue.
Would I have opted for Memantine as a last resort if I were in his shoes? I think I would have said “yes” a while back based on the ‘not a lot to lose’ argument. However, I’m not so sure now.
In my previous blog I mentioned I would be seeing my doctor about my own health issues where being forced to change medication (meds). To cut a very long story short, after seeing the eye Specialist on 10th August I wanted to look into my osteoporosis meds to check they did not contain anything that could explain why my eye pressure is still abnormal.
Imagine my shock when the first webpage I clicked on showed this heading:
Osteoporosis drug strontium ranelate (Protelos) no longer available after August
The full article, which was posted in May 2017 by the National Osteoporosis Society (NOS), can be read HERE.
I immediately got in touch with my doctor and Pharmacy, who incidentally had just signed off a two month prescription two weeks before, and asked if they were aware of this? I also dug out a Memo from The National Institute for Health and Care Excellence (NICE). The Memo was supposedly sent to surgeries. It was clearly either not received or simply ignored as my news took everyone by surprise!
There is mention in the NOS article that safety concerns over cardiovascular risk was linked to low levels of prescribing. Interestingly the NICE Memo makes no mention of this.
Servier will cease production and distribution of strontium ranelate at the end of August 2017. This worldwide and strategic decision has been taken for commercial reasons due to the restricted indication/limited use of strontium ranelate, and the continuous decrease in the number of patients being treated with it
After the Pharmacy made further checks, I was able to get my doctor to agree to request my review with my Rheumatologist (originally due in mid 2018) be brought forward. I also insisted on a DEXA Scan so as to have a baseline to work from if not able to get anything in place for several months.
I got appointments for my scan and to see my Rheumatologist within a few weeks of my kicking up a stink. My Rheumatologist did not apologise for no one seeming to have got their acts together to tell patients. I was basically asked what I wanted to try instead.
The options on offer were a daily tablet – raloxafene (Evista) – or a monthly one – ibandronate (Bonviva). It was clear neither medication would be anywhere near as effective as Strontium. Indeed the results of my DEXA Scan had shown my overall bone density had increased by 1.5% for my spine reading and 7.5% for my hip on Strontium which was remarkable to say the least.
I had been on tablets like the ones on offer for years before Strontium was suggested. They had either been ineffective or I couldn’t tolerate the side-effects. I didn’t see the point in arguing so opted for the monthly tablet purely on a basis of less inconvenience.
There also followed a saga with my needing to challenge my prescription quantity. I may bore you another day with that saga as I am still not sure if it is resolved. Let’s just say it is along the lines of my poem ‘The Prescription’ if you have my book.
My experience with meds brings me back to the potential new HD drug/treatment story. Specifically two of the questions posed to Dr Ed Wild in his ‘Ask the expert’ session.
Will the treatment be cheap enough for everyone to have access to the treatment without restrictions because of costs to the NHS?
I understand that this trial has established the safety of the drug and an initial indication that it may be effective. Will the next stage look at persistence within the body to start looking at what sort of drug regime may be necessary? For example, a lumbar puncture once a year to inject the drug is probably acceptable, a weekly one probably not!
Their respective answers were:
It’s too early to have any clear idea about cost so I can only answer in general terms. Developing and testing new drugs, especially advanced therapies like HTTRx, is very expensive – but on the flip side, managing Huntington’s disease throughout its course is already very expensive in terms of care and lost revenue. It wouldn’t make any sense for a company to develop a drug that nobody can afford – that’s bad business. My amateur prediction is that we can expect a significant price tag followed by a negotiation between healthcare purchasers and NICE that leads to the drug being made available. We may need to work together to ensure it’s made clear to the decision-makers what the unmet need is in HD – but that’s a problem for when we know whether the drug actually works to slow progression.
Everyone involved wants to come up with a regime that’s effective but has the fewest possible number of lumbar punctures. I expect different options to be tested in future trials, but we don’t yet know what those options might be.
These are very good questions. They pose the potential issue of having an amazing treatment but the patient being denied access through lack of funding resources or availability. And, even if the money etc is available, is it reasonable to prescribe and administer if the effective/therapeutic dose can only be given via frequent lumbar punctures?
There is clearly a lot to be worked through before treatment can be signed off. We can only hope that if the drug does turn out to be THE greatest tool in fighting HD since sliced bread, there is not then a case of it being too expensive; too impractical; or too limited in terms of too small a HD targeted audience.
That audience is rapidly growing though. I understand HD organisations and research bodies are now seeing a sharp upturn in registrations as a result of the breakthrough announcement. It seems like people are finally coming forward and out of the HD closet. Something at last worth putting your head above the parapet now for no doubt.
If nothing else comes out of the announcement regarding the drug being rolled-out, people coming forward is the best way to get a better understanding of the disease in the here and now.
An understanding into its prevalence; the challenges facing those testing positive and even those testing negative; challenges faced by carers be they family or external carers. Future challenges to the NHS. Maybe this will lead to the NHS not thinking in terms of “can we afford this treatment? But more in terms of “can we afford not to make full use such a treatment?”
The potential for use in other neurodegenerative diseases is also enormous. Let’s hope this aspect helps to galvanise the potential wider audience beyond HD. The last thing the HD community need is to be told later down the line by the manufacturer is that they are pulling production on grounds of restricted indication/limited use. That would simply be too cruel!
I am aware of all the negativity this blog post is exuding. Perhaps I should swiftly move on to some better news.
We have a new recruit to the task force of HD awareness. Although nothing could ever fully fill the void that was left by Sybil when she went over the rainbow, Jackie Harrison and family decided a home is not a home without a Border Terrier.
Spike came to live with the Harrison’s a little while back. It looks like Sybil approved as a rainbow was in the sky when Jackie went to collect him.
As you can see from the photo he is already trying to recruit new families for Mini Sybils via @Jaq421. Please do think of re-homing a Mini Sybil and sending in photos and videos via social media. Spike, being a pup of the technology age, even has his own twitter account. Follow him @Spikeontour .
For my own part in raising awareness and fundraising, the HDA requested a snap of Steve and me plus a few words to use for a Christmas fundraiser.
They had set up a virtual Christmas Tree where people sponsored virtual decorations in memory of love ones lost to HD or currently battling it. The photo below is the one chosen and a link to the pinned tweet can be seen here.
Also, since I last posted, I have somehow managed to get one of my articles for another website onto a BBC News thread that commemorated Concorde; as well as getting a name check in the House of Commons! I will fill you in a bit more on the detail in my next blog. This one is already long enough as it is.
Before I close with a new poem for Steve, there is one more project that I have been involved with which has come to fruition.
Bringing proceedings back full circle to the reason for my coming in today, and wanting to remember Steve on his Angelversary, there is a new book out. Not a book by me but by the force of nature that is Ian Donaghy.
Ian wrote an award winning book a few years ago called Dear Dementia: The Laughter and the Tears. See Ian in action here on a Television interview as he spreads the word about the need for better understanding of dementia and better engagement by the public.
A couple of years ago Ian put out the feelers for doing a similar book covering the subject of grief. I sent in a few words and Ian included my entry under the heading ‘On the Beach’. I am just one of many contributors and each entry has been cleverly given a song title as a heading. Why ‘On the Beach’? You will just have to buy the book to find out.
The book was released in December and is called The Missing Peace: Creating a Life after Death. Contained within the 200 pages are anecdotes and stories of loss; love; life; hope; humanity; humility and even a touch of humour.
Each contributor has given their own take on grief or experience of it. Not just the loss of loved ones but of others who come and go in our lives. ‘Pets’ can be family and loved ones too and are also covered.
I would be very surprised to find anyone who couldn’t relate to at least one entry in the book, and who would not be helped by having their own experiences validated in some way. Reading that it is not just them alone who went through, or are perhaps going through, an experience they thought no one else could ever understand or identify with.
And so to end with another photo and a new poem for Steve. The photo was taken in 2005. Steve had cut his lip when shaving, such being the way of HD. He still has a beaming smile though!
Another announcement, another proclaim.
I turn up the volume, just more of the same?
This time it looks that the breakthrough is here,
And the media raves of a cure being near.
Drill down to the detail and whilst news is good,
There’s a lot to be noted; not misunderstood.
Patience is needed, much more to address,
But surge in engagement marks instant progress.
I glance at your casket, and give you a smile,
Too late for you, but it wasn’t your style.
You lived for the moment, you ceased the day,
Looked up to the sunshine and kept making hay.
Happy 7th Angelversary Sweetheart. xx
Today ( 25 November 2017) marks 29 years since Steve and I walked into a room in Wandsworth Registry Office in South West London. And after a short but beautiful ceremony we both signed a piece of paper. A piece of paper that officially bound us as husband and wife.
Huntington’s disease (HD) was in that room that day in many shapes and forms. Not just in Steve’s father (seen in the background just behind us in the above photo), who was what I would call Middle Stage symptomatic. It was also in Steve waiting in the wings to make its appearance.
For a so-called ‘rare disease‘ I found out later, by way of the HDA Message Board , that The Registrar also had the faulty gene. I got talking to the daughter of The Registrar who mentioned her mother had worked at Wandsworth Registry Office around the time we wed. When we compared notes, she verified her mum’s signature was alongside ours on the Certificate! Was/is it also in Steve’s siblings who were present too? I hope not!
As usual by way of marking the day, I have come in to update the blog in memory of Steve and write a new poem.
My previous wedding anniversary blogs and poems can be seen here:
2012 SELF INDULGENCE
I mentioned in my blog of January 2017 that I had heard of the sad passing of one of Steve’s cousins. In September another of Steve’s cousins sadly died. He was only 44 and had also inherited the HD gene. It was his younger brother whom I had referred to in my January blog.
The funeral service was a fitting tribute for an avid fan of science fiction. From the Star Wars themed music and coffin (including a replica lightsaber placed on top complete with sound and strobing light) to the readings from books of favoured authors. This one I found particularly touching and uplifting:
“Everyone must leave something behind when he dies, my grandfather said. A child or a book or a painting or a house or a wall built or a pair of shoes made. Or a garden planted. Something your hand touched some way so your soul has somewhere to go when you die, and when people look at that tree or that flower you planted, you’re there.
It doesn’t matter what you do, he said, so long as you change something from the way it was before you touched it into something that’s like you after you take your hands away. The difference between the man who just cuts lawns and a real gardener is in the touching, he said. The lawn-cutter might just as well not have been there at all; the gardener will be there a lifetime.”
― Ray Bradbury,
Very beautiful and well chosen words indeed.
Developments since my last blog in May 2017 – ON THE WINGS OF AN EAGLE & DOVE; CARRIES FAITH, HOPE, & LOVE include:
THE PAPAL BLESSING
The Papal Blessing appears to have been a great success. They streamed the event on the day and I was pleasantly surprised at how much time The Pope took when going into the Audience and walking among the rows and rows of those invited. For some reason I had assumed it would be like you see on the television where he stands up on the balcony and addresses the masses below. Instead, it was a much more involved and personalised event. A short video giving highlights of the Event can be seen HERE.
As indicated in my last blog I was not intending to go to Rome for the Papal Blessing. However, I was thrilled to see a certain little dog (aka MiniSybil) was able to attend along with a fellow MiniSybil. They even made the BBC News! See HERE ‘Felt dog from Leeds has audience with Pope Francis’.
When Jackie and I first discussed to potential of getting MiniSybils world-wide using the #SybilOnTour branding, I don’t think either of us realised her and her team’s creations would capture the world in such an amazing way!
See HERE for a map of places where people have homed/taken MiniSybils and HERE for some of the photos sent in (including Celebrities). If you have been lucky enough to home a MiniSybil, please do send in a snap to let us know how they are doing. Contact us on Twitter via @TDainton and @jaq421 .
Sadly, there is another passing I need to raise at this point. That of Sybil herself. Jackie’s little Border Terrier who was/is the inspiration behind the design of MiniSybil.
Sybil will be missed by Jackie and her family immensely but lives on through all the joy she has brought them personally; as well as the HD Community who adopted her as a kind of mascot. We shall all miss her hats and costumes and antics stealing the show sometimes in Jackie’s home videos such as ‘The Singing Corner’ sessions.
DUTY TO WARN & OTHER LEGAL CASES
Shortly after posting my last blog the decision was announced. The full transcript of the judgement can be read HERE. In essence, it was found that there are grounds for the case to go to trial.
the Claimant’s case is arguable. I would allow the appeal, quash the Order striking out the claim, and remit the case for trial.
The legal profession is obviously taking as close interest in this case and there have been a number of blogs appraising the implications. One such blog is The GenomeEthics blog which can be read HERE
Therefore, it seems that the Court of Appeal took account of the existing evidence of professional opinion in determining what might be in the public interest in the question of whether it would be just, fair and reasonable to impose a duty to disclose. This seems to be part and parcel of the right approach to determining public interests. However, are the views of patients and the public also relevant to determining what is in the public interest here? If so, what are those views? Maybe it’s time we asked.
I am unable to get details of a date set for trial as yet. Will there even be a trial?
If I put my HD Community hat on I really hope it does progress to trial as there are a lot of issues and grey areas that need to be clarified; not just for patients and their families but for the medical and the social-care profession as a whole.
If I put my other hats on; having been a HD Carer and someone previously in management within a governmental office, I have to say I would be surprised if the Claimant and the Trust did not settle out of court if they can. This being so as to avoid the unwanted publicity and costs (for both parties even if legal aid applies) and the ethical Pandora’s box for the NHS and social care sector.
We shall see how far it gets…
Another case made the News in September involving a HD patient. This one concerned the matter of end of life care. The news report can be read HERE ‘Court ruling not needed to withdraw care, judge says’ For more in-depth details, the transcript of the judgement can be read HERE.
I still consider myself eternally grateful that I was able to keep Steve at home, and that he was able to communicate his wishes to me even at the very end. I have very mixed feelings about the above court ruling. My heart goes out to the family and it is so sad that they were put in the position of needing to go to court. It can’t have been easy either for the Treating Team.
It is becoming clear that HD is being recognised for the complex disease that it is. The laws and guidelines need to go way beyond what is already available. No doubt HD is helping pave the way for a shake up in the legal and medical system which will impact on many other diseases and medical conditions as well. By forcing questions about whether the status quo is fit for purpose.
On the last page of the 114 page Report, under Annex E – Case Reports, a HD case is used to illustrate checklists and templates are useful but cannot be interpreted as rigid. Something, no doubt, that every tribunal panel would like to think they applied anyway. Sometimes it’s not that simple though…
Of course, the case is being used to demonstrate a way of thinking which goes beyond applying to HD patients only. However, it was encouraging to see a HD case cited as a way to get people thinking again. Being in effect the closing statement and the last word as it were, it made me smile to see recognition is being given to how HD patients do not fit into simplified thinking. Just seeing the words Huntington’s disease in black and white on such a document prepared for the judicial system is fantastic awareness!
The below is extracted from the Report:
The patient was born in 1965. Like her mother and brother, she has Huntington’s disease. She was made subject to Guardianship under the Mental Health Act in 2013, and then the Court of Protection made a Standard Authorisation in 2015.
She lived in a specialist nursing home. The essence of the case was that Guardianship was no longer necessary in view of the Standard Authorisation. The Upper Tribunal found that the First-tier Tribunal had correctly recognised the importance of having the (Section 18) power to ensure that the patient returned to the nursing home if she left.
There would be practical difficulties in operating under the Mental Capacity Act 2005 to achieve this. Staff had to consider using their powers to ensure her return to the home without delay. The patient’s condition was also deteriorating and the tribunal properly referred to the crucial power under Guardianship to ensure treatment and provide access to the medical team. It was also submitted that the tribunal had failed to follow the guidance given in KD v A Borough Council and the Department of Health  UKUT 0251 (AAC).Here Charles J had set out a lengthy checklist of matters to consider in cases such as this.
Judge Jacobs in the Upper Tribunal accepted that KD was relevant, but said that it was important to recognise that the checklist was not legislation and should not be elevated to that status. As Charles J had himself said at paragraph 67 of KD, ‘it is likely to assist’. But the checklist must not be interpreted as a rigid template. Ultimately, every case is different and what matters is the substance of the tribunal’s reasoning rather than whether a tribunal’s reasons follow a particular format.
On the posthumous search for Steve’s medical notes/genetic data and his CAG Count I finally have the available records as requested back in January. The 40 working days service level agreement clearly too ambitious when the service was outsourced. I think I would have still been waiting had I not put in a strong complaint and got someone to take ownership of looking into things further.
Has getting the papers given me what I was looking for? One word, two letters, NO.
I have a plethora of letters and printouts of data on appointments; notes scribled by doctors; notes of my calling the Practice with queries; prescriptions; texts for Flu Jab reminders and copies of my letters to people (at least I now know they didn’t just throw them in the bin).
There are a number of references to ‘confirmed diagnosis’ but none that actually provide the CAG count. The nearest document is the letter sent by Sarah Tabrizi to our Doctor which can be seen below as redacted by me:
It is fair to point out, when requesting medical notes it is made clear the archives do not hold records which are the responsibility of individual hospitals to hold and maintain. By that token I was always aware I might need to directly approach the hospital where Steve’s blood was taken for testing and the Biomarkers Study. I was hoping that in the process of informing the doctor, more data would have been shared and the CAG reading included. Oh well…
The whole process of trying to get records has worn me down somewhat and I have decided to make the next step (approaching Professor Tabrizi’s hospital) something for my 2018 projects list. To be continued I dare say.
One thing I will be doing though before the end of this year is seeing my own doctor about my own health issues. I am having a forced change of medication but more about that in my next blog.
While there, I may ask my doctor to double check what they actually have on their records for me? I mention this in here as one of the things that struck me when looking through Steve’s records was the number of inaccuracies!
Steve’s main language being recorded as ‘Albanian’ for a while. I feel this is a mistake which is unacceptable in the case of someone with a proven HD diagnosis and increasing communication and cognitive difficulties.
There is no way in a million years that I or Steve would have told them this. We are talking in 2006 when I needed to attend with him to register after moving again. Therefore it looks like probable human error when adding data to the patient database. Or perhaps worse, laziness where the in-putter couldn’t be bothered to scroll past the ‘A’s option as far as ‘E’ for ‘English’.
I dread to think of how frustrating things would have been for Steve had I not been with him during appointments and treatments. Imagine my not being there and his treating team assuming his comprehension of language and use of words, when his cognitive and physical powers were compromised, could be down to English not being his first language!
When we moved again a few months later to where we finally ended up, fortunately it looks like the error was corrected as we had to re-register again. This time the right data was taken/inserted.
Such a pity no one ever thought to ask us during those last three registrations how come Steve would have gone from speaking English to Albanian overnight and then back to English? Does this suggest every re-registration involves staff having to type in all the information from scratch in the 21st Century? Qesharak!
As for my pet-hate of the use of ‘Huntington’s Chorea’ as opposed to ‘Huntington’s disease’, I was very disappointed seeing the use of the old name so often. As the above picture illustrates, chorea heads the record (E: Huntington’s chorea). The date of Jan 2004 instead of 2005 is also wrong.
Sure, HD was suspected by me in 2004 but we didn’t see a doctor until Jan 2005 about it. Therefore, technically, there was no visual diagnosis or proven diagnosis in Jan 2004. I am glad we didn’t have any insurance companies to deal with that s all I can say…
We are not just talking receptionists; doctors; and others who may not have come across the disease often if at all before. On occasion we are talking a Consultant Neurologist and members of his Team. Specialists in neurological disorders whom I would have liked to have thought were more enlightened.
I wrote a poem in my book – Curse in Verse and Much More Worse – to illustrate my passion for correcting the name. The poem was kindly read to video by Carol Royle and can be seen HERE. At the end I show the wording on Steve’s 2011 death certificate which states ‘Huntington’s Chorea’.
That name was not taken from me I hasten to add. The Registrar was very sympathetic to my frustration (she had once lived next door to a HD patient) but explained she was bound by law to enter the same wording/name as had been used on the paperwork provided by the doctor who had issued the confirmation of death for their purposes.
I hope, by now, more people in neurology and the supporting teams have been made aware of the nature of HD not just being a movement disorder. The change of name having been in place now for many years.
MY OWN AWARENESS EFFORTS
There is not really a lot to report by way of my being proactive and taking on awareness ideas. However, I was thrilled to be approached by the Scottish Huntington’s Association (SHA) a few months back and asked if I would be willing to submit something for their blog writing initiative ‘Shout Huntington’s Aloud’.
Going back into a blog I was writing at the time of being a full-time carer to Steve, I submitted a few entries and was thrilled to be featured as the inaugural ‘Guest Blogger’. My entry can be seen HERE.
I hope to work more with the SHA on future writing projects, and hopefully with the HDA too at some stage.
Also, in the last few weeks, the HDA announced a Christmas Campaign. The initiative invites people to light a bauble or star on a virtual Christmas tree for a small donation.
A special personalised dedication can be written and is displayed on a ‘tour’ around the tree. It makes very poignant reading and is a great visual representation of just how much, and how far, HD touches generations of people.
After making my own donation and dedication to Steve, the HDA asked me to help them in their social media push by providing a few words and a picture they could use. I submitted some wording and four snaps for them to choose from. As at time of writing this blog you can see the Campaign details HERE and HERE. I’m glad they chose the snap of me and Steve together enjoying life. As much as Christmas can be a sad time it is a time to reflect on happy times too.
Before I close this blog with a new poem, I just thought I would share another spooky event.
I tend to draft my blogs well in advance and update and add stuff along the way before the time comes to post. Several weeks ago I put in the opening snap of Steve signing the wedding certificate expecting it to be the only photograph available.
I was sad that I never found the one of me signing which I was sure had been taken by the wedding photographer. For the wedding album itself we chose only one signing snap. However, I was convinced I had not imagined I’d seen at least a proof version of me signing as well.
Over the years, before Steve died especially with so many moves of home etc, I have lost lots of items and photographs. Over the years, since Steve died, I have asked so many family members and friends to search for any photos they have of Steve or both of us to the point of being a nuisance!
On November 12th I met up with my sister at a cemetery to take flowers to dad. Remembrance Sunday and also it is the weekend before the 32nd anniversary of his death on November 15th.
My sister handed me an envelope containing some wedding proofs which had somehow come detached from the set I still have. She found them when looking for something else. She had been surprised to find them having thought she had given me everything by now, and I was convinced I had looked through everything when at her place over the six/nearly seven years since Steve passed!
You have probably guessed by now what was in amongst them. Yes, the snap I had been pining for even though only in my own mind as my sister was not aware I had been looking for it all these years. Or in particular for this blog entry where I was so sad I thought it was lost forever.
Make of that what you will but I’d like to think it was a posthumous anniversary present from Steve.
The photo is inserted after my poem. Thank you Sweetheart!
‘Everyone must leave something behind’ but as I look around,
No flowering plants; no works of craft; no hand-made items found.
I guess that as the years went by, where HD came to stay;
Items culled through every move meant loss along the way.
For one so gifted with your hands it’s sad there’s nothing left,
To show how you had made your mark. A home now so bereft.
But take another look around; with every single view,
The home is filled with items kept or here because of you.
The photos on the wall you took, or taken when together,
Prove that you existed then and will exist forever.
As for touching something else to help ‘your soul’ live through…
You touched my heart; my mind; my soul. I’m me because of you!
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!
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.
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
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.
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.
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.
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
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!
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.
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. 🙂
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.
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.
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.
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!
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:
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’.
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:
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…
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.
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;
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.
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.
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?
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?
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?
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.
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.
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.
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.
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.
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.
Happy Angelversary Steve
With love from
Your Bijou xxx
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
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.
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.
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. 😦
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,
Complexity of gaps filled in,
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?
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!
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.
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 Sabine; Rachel 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.
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.
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!
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.
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.
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 :
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.
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.
- Amantadine hydrochloride
- (a brand ofApomorphine Hydrochloride)
- Apomorphine hydrochloride
- (a brand ofProcyclidine Hydrochloride)
- (a brand ofRasagiline Mesilate)
- (a brand ofCabergoline)
- (a brand ofCarbidopa Monohydrate/Levodopa)
- (a generic version ofStalevo)
- (a brand ofBromocriptine Mesilate)
- Pramipexole dihydrochloride monohydrate
- Procyclidine hydrochloride
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!
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.
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.
Looking at your photos now,
I don’t see imperfection.
Twinkling eyes and lovely smiles,
Stand out in your reflection.
With a smile from ear to ear;
Subtle smiles included,
Show an inner sense of cheer.
Cheeky grins from long ago,
And some from time much nearer;
All bring back your sense of fun,
And make your story clearer.
Many of us see two letters;
‘HD’ stands for illness.
Use another meaning,
And the letters stand for stillness.
High of Definition,
Is another way of seeing,
Clarity of vision,
And a better way of being.
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.
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