WARNING SIGNS & TUBE-TRAIN LINES.

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

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

My previous Wedding Anniversary blogs can be seen here:

November 2011 – And the wisdom to know the difference…

November 2012 – Self indulgence

November  2013 – SILVER RINGS & SPARKLING THINGS

November  2014 – DEDICATION NOT MEDICATION

November 2015 – A Wealth of Mental Health

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

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

Duty to warn

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

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

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

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

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

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

Work Capability /Employment Suitability Assessments

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

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

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

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

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

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

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

Writing out of the HD Shadow

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

My entry can be seen below:

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

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

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

#SybilOnTour et brooch d’amour

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

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

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

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

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

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

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

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

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

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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.

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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. 🙂

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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.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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Posted on November 25, 2016, in Uncategorized. Bookmark the permalink. 2 Comments.

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