Last year I posted up SILVER RINGS & SPARKLING THINGS to commemorate what would have been our Silver Wedding Anniversary.
Still continuing on the theme of Steve’s lovely blue eyes, and my penchant for blue topaz jewellery to echo my engagement ring, I’ve used it as an excuse to buy myself a set of beautiful blue topaz earrings and matching necklace. The necklace will be put away for Christmas. Don’t worry… For Steve’s element I bought Queen, Deep Cuts Volume 1 CD and a Crystal Palace FC DVD.
I purchased the jewellery on-line from Macy’s. Steve and I never did get to Macy’s in New York which was on our Bucket List. We had hoped to do a trip to New York and Las Vegas but it wasn’t to be. We did, however, visit Macy’s Store in Boston in 2001.
Little did I know it at the time but one resident of Boston would be instrumental in helping me cope with our future and, in particular, my struggles in caring for someone with Huntington’s disease (HD). I’m talking about a guy called Jimmy Pollard.
Jimmy is a legend in HD circles. His background is in managing care facilities for those with neurological conditions, especially HD. He has written several books on care-giving including the book ‘Hurry Up and Wait’ which I have mentioned in my own book and in previously in my blog. Hurry Up and Wait gave me a better understanding of, and empathy with, those with the illness. In essence it was like an epiphany for me.
Some thirteen years after mine and Steve’s visit to Boston I was lucky enough to be able to spend time with Jimmy in our own home town of London. It was good to be able to personally thank him for his guidance and his part in helping inspire me to write Curse in verse and Much More Worse.
Jimmy was in the UK for various presentations, including taking part in the Huntington’s Disease Associations’ AGM/Family Conference Weekend. We hooked up in London and I was glad to take him to a part of Town he had not been to before but had heard about in the songs penned by some of the British bands he liked – The Rolling Stones and The Kinks.
I took him down The Kings Road, Chelsea. A twist on the usual London sight-seeing tour and I took him on a London Bus. We bagged the front seats on the top deck which was a great way to show off various sights along the route. He probably got sick though of my pointing out places I have worked at along Victoria Street and Buckingham Palace Road though lol.
We spent a lovely time in The Cadogan Arms (where to photo above was taken) and The Chelsea Potter chatting like old friends about how important it is to not lose sight of the here and now when it comes to Huntington’s.
Better medications for the diverse symptoms of such a complex disease are being developed. Ultimately a cure may be on its way by switching off the rogue gene that causes the changes. However, that seems a long way off for those in the throes of HD right now.
What needs to be focussed on in the shorter term is support and education for family carers, and the caring professionals who are at the front-line in the battle against HD. Dedication being much more effective than medication as things stand.
Where I believe Jimmy’s book resonates with those caring for someone with HD, and I hope my own book and this blog reflects also, is that a lot is about empathy and putting yourself into the mindset of someone with a neurological condition.
During our chat I got very emotional when recounting two particular moments where I believe I experienced a little of what Steve had been going through, and what would also turn out to be a little insight into HD. The first was before Steve was diagnosed. The second was after he had died.
Interestingly, the first episode was on our Boston holiday in 2001 . Steve was showing subtle signs of the illness but it was hard to pinpoint if it could be HD or simply less sinister things. Steve was not formally diagnosed until 2005 as we both plodded along still hoping he didn’t have the illness.
Being on holiday, Steve and I liked to go shopping and we strolled around one of the Malls. We stumbled across a shop that specialised in items for left-handed people. I am right-handed but Steve was left-handed so we strolled on in.
There were probably similar stores back in the UK but neither of us had come across one before. The internet wasn’t as big a global marketplace at that point so we were amazed to find such a range existed!
Steve had told me many a story about how, as a child, he was forced to use his right hand as if being left-handed was something to be ashamed of! It could even have been perceived akin to being disabled in a world designed for right-handed people. Indeed, during the years of denial Steve would often say “it’s because I’m left-handed” when trying to do things that would be clumsy.
Whilst browsing around the shop I picked up a pair of left-handed scissors and attempted to cut a piece of card that was laid out for cutting. It shocked me how awkward the loops for my fingers felt in my right hand. When I tried to cut the card I couldn’t!
It was as if the blades were sweeping across the card and I could not get the pressure points right to bear down on the card to make the cut. I tried for a little while even swapping to my clumsy left hand but felt too disorientated and weak to comfortably use them. In the end I gave up. Steve tried and made a cut with ease.
Instead of doing my usual and making a joke of it “show-off” I would say to mask my embarrassment, what popped into my mind was this.
What if I had just experienced how Steve felt when trying to tackle stuff? With it feeling awkward and unnatural. Is this how life had been for Steve? And what if we extended that to HD? Regardless of being right or left- handed, when suddenly doing the simplest of tasks feels different and too challenging to tackle or complete?
It gave me a lot more respect for Steve. I’d assumed he was being clumsy or putting it on some of the time. I’d laugh at the way he would look so focussed and struggled when using a tool such as a screwdriver not thinking about the threads being opposite to the way he would naturally want to turn the handle. The tongue poking out of the side of his mouth in concentration.
Looking at my wedding photos I thought he looked sweet when we were trying to cut the cake with its very thick Royal icing to serve up to guests. The cake knife was standard right-handed knife. Bless him… He was trying so hard…
I did try to find a link to the store to put in here. There are plenty of places on-line but I couldn’t pin down the place itself. I did find a mention of what I assume is the store on a Left-hand site under a Teacher’s Forum. I’ve reproduced it below as it seems like others felt the same way as Steve may have for so many years.
We did buy some left-handed items to take home including scissors and a left handed ruler. Yes there is such a thing! The scissors were before the 9/11 bombings so we got them through in our luggage but I was a bit apprehensive had I been asked to explain them at a baggage check.
I’ve sewed my clothes since I was 10 years old and made drapes with my Mother. Would you believe that I was in my late 30’s before I was given left-handed scissors????? All those years, I thought cutting material was just a difficult chore!! Now I have left-handed scissors in every room.
On a trip to Boston, I found a left-handed store and went crazy. I bought myself a left-handed potato peeler!!! Absolute heaven!!! What a difference!!
I hope all parents are aware of the difficulties of a left-handed child in a right-handed world. Imagine how a pair of scissors made my world so much easier and I had to wait until I was an adult to experience it????
Cited from a Teacher Training Forum area of the website of Anything Left Handed
The second episode was when I was looking at a few snaps of Steve on one of our trips to Wales. We were staying in Llandudno for a few days and had booked a coach trip to Anglesey. The trip included a visit to the famous railway station with the very long name of of Llanfairpwllgwyngyllgogerychwyrndrobwllllantysiliogogogoch.
I used to make Steve laugh by saying “Clan Vwire Pwull”. I would then mumble a little bit of incoherent noise and say quickly “Go Go Gok”. It amused Steve that I used to try and that I sounded so silly.
Whilst looking at the photos, which came up on the digital frame, I said out loud “Clan Vwire Pwull”. It made me cry. Not just the usual grief and sadness of missing Steve’s smile and laugh in response, but a thought/memory popped into my head. It was recognition of Steve’s own struggle with speech as time went by.
I became acutely self-conscious of how my tongue had felt so wrong in my mouth as I tried to say the place name. My mouth had distended and I there seemed to be an excess of saliva which I needed to swallow.
I also thought back to how, with it being too hard to pronounce, I would cut out the middle bit where I had given up on even trying that part. For the last bit (the “Go go Gok” bit) I would say it in quite a guttural way. Not just taking the proverbial out of what is actually a beautiful language. It was a bit like the last part of a run and sprinting to the finish line, practically throwing myself at the finishing tape with relief.
As with the left-handed scenario, when applying it to HD it got me thinking about how even the most simplest of words could have seemed like an uphill struggle. The equivalent of trying to read and say Llanfairpwllgwyngyllgogerychwyrndrobwllllantysiliogogogoch when communicating even the simplest of words and phrases.
Once again that sense of guilt. Things feeling alien and unnatural with the body and brain not wanting to work the way it should and yet I and others not comprehending the effort and frustration.
Who could blame Steve for limiting his words, or parts of words to the bare minimum? Who could blame Steve for wanting to get a word out with gusto? Who could blame Steve for wanting to control the flow of excess saliva where the swallow reflex was compromised by muscle weakness and natural control and rhythm?
When recounting this to Jimmy I mentioned how most people, unless they were fluent in the Welsh language of course, would also have problems with that particular place name. If the word were shown to a group of people I expect some would try it but fail. Many would not even try.
If taking the Welsh place name for an exercise for carers to help understand the HD brain it could be tackled bit-by-bit. Broken down into segments, and given with an explanation of pronunciation (see more below) it could be repeated again and again until able to be read the whole way through. That would be a way of getting through the word with practice.
The exercise would also demonstrate there would need to be a lot of practice and much patience afforded by both the speaker and the listener. Apart from the perseveration angle there would be the tendency to switch off listening by the speaker and audience . The natural flow of the word being disjointed not helping.
When looking for a website to link to in here, which would break up the word at the best natural points, I came across a video on YouTube. It added another dimension to not being able to pronounce the name and speaking in general.
The video teaches pronunciation by using a song. See HERE I couldn’t possibly say I could ever become fluent as a result of singing along but it was a lot easier to pronounce and remember when singing!
In a previous post, Brainwaves for the Airwaves, I talk about the power of music in helping tap into Steve’s very core and how it helped our quality of life. I wrote the poem in it ‘The Magic of Music’ for Steve. There is clear evidence that music has a unique effect on people. For many years charities like Nordoff Robbins have been advocating using music and singing in therapy, not just for children but for vulnerable adults.
Many papers have been written on the benefits of singing in for people with neurological conditions, and also those with aphasia .
I’ve noted most papers; books and videos focus on treatment in Stroke and Parkinson’s alongside stuttering; autism and tourettes. Sadly I could not find anything mentioning HD.
It has to be said Steve did not strictly have aphasia as far as I could tell but then no one ever really explained what was going on or all the different types of speech problems there were. I would open letters which were the copies to Steve’s doctor and read things like this:
Mr Dainton presents with a mild-moderate oral-pharyngeal dysphagia and a moderate-severe perkinetic Dysthargia.
Jaw, face, lips and tongue affected by chorea….Spontaneous speech was markedly reduced and clearly effortful due to chorea…. Swallow …. Informal assessment indicated a slightly prolonged oral phase and adequate bolus formation and control
Stephen presents with an uncoordinated and prolonged oral stage during swallowing. He has difficulty in creating and manipulating a bolus, and transferring it smoothly to the back of the mouth ready for swallowing. His pharyngeal stage of swallow (swallow reflex) appears disorganised, with some gulping and occasional delay. For fluids the timing and coordination looked improved and swifter. …. his coughing was short lived and appeared to be of adequate strength to clear his airway…
I would then have to look up the words on the internet as it was difficult to speak to such busy people and by the time the next appointment was due…
I also felt it was taken for granted that his communication was not a priority in the scheme of things where I would always be expected to act as his translator come communicator if needing to deal with the outside world.
The third example above is considerate of using bracketed explanations, and was written by a very good Speech and Language Therapist (SLT) who was arranged through our Community Rehabilitation Matron. The problem I have when reading it back is the emphasis was on the feeding aspects, not verbal communication.
Communication boards were discussed but, at least from my way of thinking, that was taking it for granted that Steve would lose control of verbal communication and not so much dexterity. How frustrating to have an array of choices put in front of you and the lack of steadiness to be able to pinpoint; or even more worse being seen to point to the wrong thing thus causing miscommunication. We did manage to get a Lightwriter after a fashion but it wasn’t really suitable.
There is a lot more on the market now for non-verbal communication these days. I wish I had been able to have new technology and known of organisations such as Talking Mats when Steve was alive but I just saw a range of basic/rigid options back then.
I can’t help thinking I should have looked further into other types of help. Maybe vocal and physical exercising of the mouth muscles would have kept his speech intact longer had we been offered other therapies?
Steve never totally lost the ability to speak but it was clearly hard for him, and my listening skills were tested to the limit. Needless to say there were times communication got confused and angry on both our parts.
Tiredness and agitation also played a part in Steve’s general HD progression. It could perhaps be argued therapy, had it been offered, may have led to another area of feeling inadequate and done more harm than good. On that basis, I would argue for more advice and options at an early symptomatic or even pre-symptomatic stage.
It’s such a shame we were not encouraged to join a choir as part of the introduction to learning to combat HD for as long as possible. Vocal exercise; communal enrichment and something we could have shared too at home as a couple.
I appreciate some people reading this would wince at the thought of joining a choir or taking singing lessons. As for trying to get someone in denial of HD to do something proactive you could be on a loser before you even start. Thinking back to me and Steve it could have been worth a try.
Steve was actually in a choir as a child. I mentioned in The Eulogy Steve’s appearance on the television in the choir when Songs of Praise came to his locality.
Noel Tredinnick was in fact Steve’s school master at Langley Park Boys School in Beckenham. He got Steve involved in the choir so Steve would always be excited watching Noel on the television.
Possibly something in the Beckenham air but another Welsh sounding named young man hailed from down the road from Steve’s home. A certain David Jones. People probably know him better by the name of David Bowie.
Would David have walked past members of Steve’s family and thought there could be a drunk person because of the unsteadiness? I can’t answer that question.
From reading Paul Trynka’s book ‘Starman’ though it does suggest for all David’s wonderful musical talent and imagination he was just as oblivious to HD as the average man on the street. What makes it even sadder is David was no stranger to mental illness where his half-brother Terry Burns suffered from schizophrenia.
In Trynka’s book, Chapter 17 appropriately titled ‘I Am Not a Freak’ he writes:
Simon House‘s memories of the tour are much darker, for reasons unconnected with David. The violinist’s partner, Sue, was ill with Huntington’s disease. Her plight was all the more sad, for she wouldn’t acknowledge the problem which eventually left her hospitalised, and insisted on joining the tour. The illness manifests itself in varying guises;in her case, she’d act as if aggressive or drunk, causing so much racket in Tokyo that the hotel called the police. David, not unreasonably, got upset if he saw Sue while on stage. It made House feel like an outcast. Worse, Bowie didn’t address the issue directly so House couldn’t even explain Sue’s illness first-hand. In those situations, as with most issues, it was Carlos Alomar who brought an almost spiritual, soothing attitude. Carlos is a psychologist, a spiritualist, one of the most charming people in the world’, says House. We got on really well; I wouldn’t have enjoyed the tour without him. He was the one who would distract from the problems.’
I was actually in a choir myself called ‘Young Singers of London’ and I think we probably had more training in the English language from choir masters than we got at school at times.
Add to that a touch of Latin and German when translations were given of the beautiful choral songs we sang. You can even add a touch of Polish for me where my choir sang a beautiful Polish Lullaby at a Christmas event once Lulajze Jezuniu. Well it is only one month until Christmas after all… And that’s not the choir either of us were in just in case anyone thought of looking out for us lol.
Talking of translation,. I wrote at the beginning of this section we went to Llandudno. I’m guessing you may have already lost the plot by now where I have been rambling on but I just thought I’d add another area of brain to mouth comprehension.
Did any of you read that as Lan Dud Know?
I mentioned above I pronounce ‘LLan’ as “Clan”. I do that because that’s how I hear it when spoken by the Welsh. I could be wrong, I could be close, but that’s just how I hear it. But what about the ‘dud’ part?
On one of our first Llandudno trips the tour guide explained that it Wales they pronounce the letter ‘U’ as we English would the letter ‘I’. Next time I saw the word my brain connected the pronunciation better. See HERE.
Maybe there is a lesson in there somewhere that if we understand why a person may be making a wrong assumption we simply re-term it to help make sense.
There’s a connection with the Welsh language and and singing ideas. Welsh being the Land of Song and famed for their Male Voice Choirs.
Perhaps Steve and I should have moved to Wales in the early days. Not such a random thought… On Steve’s mum’s side of the family (the non-HD gene pool) there are Welsh relatives. Mainly in and around Abergavveny.
I understand many years ago one of Steve’s relatives played the church organ at a certain local celebrity couples’ wedding. The wedding between Martyn Lewis and Liz Carse. If I recall right her name was Gladys Slattery but Steve always called her as “Ah Darr”.
Those in UK HD circles may recognise Martyn’s name not just from his ITN/BBC Newscaster days. Martyn has been a campaigner for Huntington’s disease. Turns out his wife had it! He talks a little of his circumstances HERE and HERE.
Small world/globe eh?
This neatly brings us back full circle to my original reason for wanting to come in and blog today.
From mine and Steve’s 26th wedding anniversary; to swapping ideas with Jimmy Pollard on empathy for those with HD; to how music may help; to how the language may need to be looked at differently; to how Steve’s family have Welsh roots; to tenuous wedding links to Martyn Lewis whose wife had HD; and back to mine and Steve’s own wedding this very day 26 years ago.
I will end on a poem and a link to YouTube. One day I will get the hang of sorting better thumbnails. Scroll to the bottom and you may see where I am coming from.
The YouTube is another set of photos of us recycled as ever. It lasts 8 minutes so I don’t suppose anyone will be interested. Thing is, once I selected one snap I wanted another, and another, and another.
I suppose I have done the slideshow, and indeed this blog, for myself more than others. Whatever the case, I do hope if anyone reads these blogs they get something out them be it HD related, grief related or just good old fashioned human interest story.
Another year has come and gone,
My last post covered ‘Moving On’.
Not that I could ever leave,
Or walk away from how I grieve.
My mind’s still finding different ways,
Of making sense of those last days;
Of making sense of those last years;
Of realising all our fears.
There’s lots of things I didn’t know.
Emotions that I didn’t show.
There were the times when words like “Hate!”,
Were all we could articulate.
I still reflect on time with you,
And what I did and didn’t do.
Of times I should have held my tongue;
Of things that cannot be undone.
The underlying deep frustration,
Gentle days were with us too,
Articulating “I love you”.
The home was filled with others’ voices,
Singing songs through music choices.
I still have music in the air,
But wish that you were here to share.
I took the ring and said “I do”?
Do I regret I saw it through?
I now have time where I reflect,
On how much did HD affect?
Familiar songs bring back to me,
The good times how it used to be.
They take me back to when we met,
You stayed that man, I’ve no regret.