In New York

In New York

Thursday, 31 July 2014

July: Successes, set-backs and looking ahead

A month off

July has been a busy month for us. I’ve had a months’ unpaid leave to spend more time at home with Roch, Kate and Tom and to take more time for myself. It’s been lovely that the weather has been hot and sunny, with a real summertime feel about it. I’d like to report that we’ve been out and about a lot but in reality, the hot weather isn’t great for Roch. He loves to sit out and bake in it but the bad air quality does affect his breathing. So we haven't gone far, we’ve spent time in the garden, relaxing together and catching up with friends. We managed to get to a Birthday party – it was like old times, getting dressed up, staying out late and having a laugh.  Old friends Joe and Louis came from Dublin to visit – that’s always fun and relaxing. When I say old friends, Roch first met Louis in ‘Low Babies’ class at school in Dublin in September 1966. They ‘graduated’ together into ‘High Babies’ and thence into First Class. We met Joe when we were at University and he was Best Man at our wedding, almost 24 years ago.  When the lads get together it’s non-stop reminiscence and banter. We never get tired of the old jokes – ‘the leg of salmon’ and ‘the cross eyed judge’. Don't ask. With every visit, there’s a new story and a new gag to go with it.
I've had time to see my counsellor, get my hair done and catch up with some of my mates, enjoying lunches and coffee out. Jenny and Dave have been continuing with their shifts, looking after Roch on the days when I would have been at work, so I've had that time for myself. I've been lucky this month.

Doing our bit

We did our bit this month too for the MND Association and for Dignity in Dying.

Early in the month I went with Roch and the Chair of our local branch of the MND Association to an outlet of a major supermarket chain (which shall for the moment remain nameless). The Branch had been invited, along with two other local charities, to make a pitch to be Charity partner for the year ahead. I really have to say that it was an unbelievably disheartening experience. My understanding is that there is some follow up action taking place, but I would just like to record my own disappointment at the way in which we were treated on the day.

The three Charities were all told to arrive at the same time.  This meant two Charities had to wait their turn. Guess what? The Charity with the terminally ill, disabled person, was left waiting until last to make their pitch. Yes! That was us. We waited an hour. We had been told that each Charity would be given the same limited amount of time to be heard, but the other Charities went way over. By the time we entered the room, it was lunch time and I can bet you those present were pretty hungry. I know I was. We sat at the end of a board room type table. There were ten staff members present. There was no greeting, no welcome, just silence as Roch tried to manoeuvre his wheelchair into position. The man at the head of the table lounged in an attitude of complete disinterest, chewing his pen for the duration of the meeting. Very few of those present dared to raise their eyes and actually look at Roch when he was speaking.
I had to ask myself – Is the disease too frightening? Is the idea of it so intimidating that it is difficult to face a person living with it? This may be true. It is an awful disease, it is scary…If they found it too intimidating, then why invite a person living with MND to come in and pitch? If the Charity is not suitable for your organization, choose a more suitable charity – something less scary and threatening perhaps? You’ve guessed, of course, that the pitch was unsuccessful, but we knew it almost the minute we walked into the room. It felt like they had already made a decision. If felt like a waste of everybody’s time.

A more successful venture was the Branch’s annual Bushy Park Walk, which took place this year on 20th July. Tom and I walked the walk and raised £520 for the Branch – thanks to the amazing generosity of our friends (you know who you are).
Those of you who watched ITV’s Tonight Programme on 17th July will have seen Roch on screen helping to make the case for Assisted Dying. ITN spent a day filming with us in June. It was truly exhausting, although an interesting experience. We were pleased with the programme in the end. Roch came across really well, although those who don’t know me may have wondered who the strange woman was who walked along beside the wheelchair or gazed adoringly from the sidelines. The good news is that the Bill has gone on to the Committee stage in the House of Lords so ‘A lot done, more to do’, to borrow a phrase from a former Irish Taoiseach (thanks, Bertie).

My Literary Success!

Having a month off has given me the opportunity to concentrate more on writing fiction. This is one of the reasons I have strayed from the blog. One of my stories has found its way into an anthology which is going to be published in 2015 and I am very excited about this. I’ve had some modest success in the past with my stories but this is the best yet for me. So I want to devote more time to fiction. It also provides me with the great escape…I once wrote a note in a journal, quite early on in the life of the monkey which read ‘Whole seconds go by when I don’t even think about it.’ Well, when I’m really into my writing an hour or more can go by when I don’t even think about the monkey.  

'Frogs', planks and 'dirty dogs'

I had a lucky break this month, as Integrated Neurological Services in Richmond offered a brilliant opportunity for Carers - a block of 5 sessions with a personal trainer for a nominal charge of £5 per session. I had my final session just the other day and I now have a personalised exercise regime which I hope to maintain. Already my arms are stronger. I can feel it when I help Roch to stand or sit up. I wanted a set of exercises that would help me in my caring role but also give me more confidence to cycle. I was feeling very nervous about this  – now I’m not saying there’s been a huge transformation but there’s definitely been an improvement over the month so the bike is about to come out again. Thanks to Chris, who encouraged my feeble attempts at push ups, planks, squats, 'frogs' and 'dirty dogs' with professionalism and humour!

Looking forward

I go back to work on Monday so I have a few days left to enjoy at home. Roch has requested that I go straight in and ask when I can have another month off to stay at home so I guess that's a good sign. After twenty four years married, he still wants me at home!
We have a lot to look forward to - our Brentford Season tickets have arrived...
At the end of next month we are off to Dorset for a week with Tom and Kate. Late September will see the arrival of Roch's brothers and cousins for a weekend, to take in Brentford v Leeds and generally cause mayhem in the house - in a good way!

Life continues in spite of the Monkey.


Lekshmi Krishnan RIP

Lekshmi Krishnan lost her battle with Motor Neurone Disease on 9th July. She was diagnosed with MND in 2007. I only met her once, at the first Bushy Park Walk Roch and I attended, so I can’t say I ever knew her personally, but I do know Jai, her devoted husband and Carer. Jai is a stalwart of our Carer Support meetings, always ready to share his considerable knowledge and experience and to provide advice and support to other Carers.

As always, news of the death of a member of our local Branch comes as a shock and both Roch and I were shocked and saddened to hear of Lekshmi’s death. More and more I find that it doesn’t matter how long a person has lived with the disease, nothing prepares you for their death at the end.

Our deepest and heartfelt condolences go to Jai and to the rest of Lekshmi’s family.