Monthly Archives: January 2015
Tomorrow, 27th January 2015, marks four years since Steve breathed out, and his body decided it couldn’t be doing with the breathing in thing any longer bless him.
Each year I have been coming into this blog and marking the sad occasion with a post. Please take a few moments if you will to read the poems for Steve, and see the photos of my lovely man who still inspires me to write. A man who gave Huntington’s disease (HD) a good fight and refused to give up!
Another New Year has run up behind me and ambushed me. More challenges and opportunities beckon that I somehow have to make sense of.
In a previous blog entry I wrote about having found work again. Sadly the job folded which was a bit of a surprise to say the least. However, a few days later I got an intriguing text from my housing association out of the blue.
The text asked residents to make contact if they were interested in free training by way of taking NCFE Level 2 Award in Support Work in Schools.
I decided to check it out and have been lucky enough to secure a place on the ten week course which is being held locally.
The timing of the text, or should that be the timing of the job going as I would have ignored it if still in full-time work, does make me wonder if it was meant to be? Whilst I can’t be sure if a teaching support pathway is right for me as a long term option, it is an interesting opportunity. We shall see…
To mark four years passing, I have written another poem for Steve at the end of this post and inserted more photos. The photos are slotted in within one of the blog entries I wrote in June 2008 for ‘Pimp my Blog’. I’ve extracted a part from that blog entry which refers to a Llandudno trip. My previous post DEDICATION NOT MEDICATION touched on our love of Llandudno.
Apart from using it as an excuse to show photos in context of my lovely man again, I find it sad and comforting at the same time that back in June 2008 I was so in awe of Steve’s strength and determination that I felt compelled to write and photograph examples.
The photos were originally taken in secret as it were. Basically I didn’t want Steve to stop what he was doing and know I was watching/taking shots of him lest he become self-conscious or stop to pose bless him.
I managed to capture Steve’s fine motor skills. He holds a pot of coins in one hand; needs to take out a small coin from a tub of coins; needs to reach across to the machine standing still and finely place the coin into a very small slot. And all that with precision timing if trying to get maximum impact for the coins to fall into the win tray. He was reaching and teaching his body and brain and I’d hoped was also teaching the so called experts a thing or too about determination and hope.
Apart from wanting to take photos for my own purpose, I wanted to show Steve’s neurologist that creatine was giving him stamina enough fight his condition. I do believe creatine gave Steve a physical and mental boost but sadly a study has since suggested there are no benefits of creatine. I wish that more had been done in consultation with patients and carers to look at how much benefit it could give to those with HD. The research laboratory is NOT the only lab available for observations.
I had started Steve on creatine just a couple of months earlier after he had collapsed and been admitted to hospital having had a chest infection. His poor body was so weak where HD had made him fragile. I had read about creatine on-line and thought it would be worth a try.
After consulting with Steve’s GP and neurologist, and on the basis I would make regular checks and observations on side effects (including having regular blood checks) I was basically told I could try it as there was nothing to lose (except for a lot of our own money as it is not prescribed on the NHS). In essence I felt they were paying lip service to me as no one during, or since, has ever asked how we got on with using it.
I have also given a link HERE to a new YouTube (slideshow) video which shows more photos of Steve’s concentration, dexterity and stamina during that trip. He looks a bit tired towards the end but he was amazing given everything taken into consideration.
Steve is playing on his favourite penny arcade game, and mine too if I am honest. It was lovely when my sister called me one day and said to switch the television on. There was a game on television she said Steve would have loved called Tipping Point. I love it when people remember Steve to me and she was right. One of our must see shows 🙂 Maybe I will apply to go on it one day?
Adapted from PIMP MY BLOG © Trish Dainton 2008
Week 8 – Pooh Sticks
Saturday 21st June to Friday 27th June 2008
The evening went well with Hubs eating for England and I didn’t have too many drinks as we had to get up even earlier the next day. Thursday was our day for a coach trip and, having little choice as we’d done them all before, we decided to opt for Caernafon Castle which meant a long day trip.
We got to the coach stop after a slow walk and Hubs sat a while on a bench waiting for the coach to turn up. I was quietly confident we wouldn’t have our usual fiasco of people being polite when I was trying to tell them to get off before us to give us time and space. You know the sort of thing…”You go… No, you go… No you go…”. I just hold back on saying “For f**k’s sake just get off will you and leave us to take our time!”
The reason I thought we’d be fine this time was I’d already booked the seats weeks before and got seats 1 and 2 which meant people would be happy to pile off ahead of us. Just a pity we couldn’t have booked seats 0 and 0 as Hubs still managed to fall on his bum where going past the first seats I was actually trying to steer him into and falling.
The coach was full of elderly passengers with walking sticks and dodgy hip replacements so we were not the only ones taking a slow pace but we didn’t see any of the sites really. We opted to stay in the [Pieces of Ate] cafe next to the coach instead of seeing the Castle, and on the coach itself apart from potty stops as the weather was crap.
Friday was our last day in Welsh Wales and I’d promised Hubs we would go on the Pier and play the arcade machines. It’s a long Pier, and the machines are right at the end of it, but there are plenty of benches on it and it makes for a good walk.
Every visit I wonder how Hubs will cope with playing his favourite game. The cakewalk type game where you place coins in and they drop down to then push other coins which cascade down. With skill and luck the coins fall over the edge and into the winnings tray below
I was trying not to let him notice but I watched in awe as Hubs managed to hold every individual coin and place it in the very small slot then watch patiently as it went into its place, and either knocked off coins or stuck there having landed on top of another. It took him a lot of time, and the concentration and effort it must have taken him even just to stand up/stand still that long was etched on his face at times. He only dropped one coin on the floor; such was his triumph over adversity in itself.
I had been at a nearby machine. I’d been playing for so long and I’d won a fair bit and put it all back, except for a few coins I’d sneak in Steve’s winning tray when looking at his winnings for him. He was well proud of himself when I scooped out about 20 coins from the tray after he’d put in 50 (£1 of 2 pence coins)
After coffee and biscuits in the little cafe’ next door, and a stop at the disabled loo (THANK GOD FOR RADAR KEYS!!) we headed back to the hotel and had a rest in the bar before our cab was due. On Tuesday we had needed to get a cab back to the hotel from the shops as it was clear Hubs was flagging. By chance I found a cab which was adapted for the disabled so I made sure to get the driver’s details for the trip back to the station.
Despite arriving an hour early there was a panic by the assistants to get us on a packed train and we were put in the wrong seats having been told our seats were not vacant. It was not until halfway home, when I struggled to get Hubs along the carriage to the loo, that I noticed our names over the two vacant seats right by the door. It turned out there had been a misprint on our seat reservations issued with the tickets.
Once finally settled in our proper seats I enjoyed the rest of the journey and with assistance at the other end being good, and the ComCab being easy to get, we arrived home safe, sound and happy with our trip. Before leaving the hotel I had booked us a room again for November for our 20th anniversary. It’s sad to think I may be going back there alone one day with a little pill box of some ashes to scatter off the Pier.
Poem for Steve
Another year has fluttered by;
As poems and my blogs suggest,
We’re still at home, your ghost and me.
Some would say a change is needed;
Some would say an exorcism,
Casting out the need to keep you,
In my thoughts, my life, my prison.
I would say I’m very happy;
I would say my life’s not stressed,
Having time for my reflection,
On a life which feels so blessed.
Looking back on posts and poems,
In the book and those in here,
Makes me raise a heartfelt smile;
Makes me shed a heartfelt tear.
Reading back the blogs I’ve written,
Goes to show how much I’d care;
I record your strength and struggles,
In the words I chose to share.
The fact I am now writing this,
Expressing life in poetry,
Just goes to show the mark you made.
In those few years you shared with me.
Most of all I hope my words,
Whatever form or situation,
Reach your ears and let you know,
You still deserve my admiration!