In New York

In New York

Wednesday, 28 July 2010

Monkey see, Monkey do

Here we are at the Parliamentary Reception in June, with other members of MNDA branches.
Doesn't Roch look dashing?

On to more recent news:
The wheelchair arrived on Monday. I think Tom has got the hang of it now...
We went to King's College Hospital last Thursday and saw Professor Shaw. For me it is always such a positive experience, and I know that sounds odd. He answered all our questions just as Professor Al-Chalabi had - with clarity and with respect and he clearly knows what he's talking about. He said that 50% of patients diagnosed with MND on the same day as Roch were dead now. 'You're an Outlier,' he said. So yes it's a slow progression. Roch said that sometimes he wished it would just get on with it and he could get it all over with. Professor Shaw didn't blink an eye, he simply said he'd specialised in MND for 18, no, 20 years and no patient of his with the rapid form had ever said they were glad they had it. That helped Roch. I refer you to Chris Woodhead's remarks as reported in a previous post.

Roch's been a bit down lately - I think the shoulder thing has been at least partly responsible. Professor Shaw confirmed it for us - now pause for readjustment as we are reminded again of the power of the monkey. Monkey see, monkey do. And so we go on...

Easyjet have replied to my initial complaint about our experience at Marco Polo airport when our flight home from Venice was cancelled. And yes you've guessed it - pretty standard, 'please submit receipts for expenses incurred etc.,' Round One.

Have I told you the story? Basically, the flight was cancelled and at that point it was all able-bodied men for themselves. All 'special assistance' flew out the window. No priority was given for disabled people, and I won't even go into how unhelpful the airport staff were. No Easyjet staff available. That's a budget airline for ya. Round Two to begin. I will report on progress.

Venice, we miss you...Dublin next and I am really looking forward to going home. As my mother often says, 'A girl's best friend is her mum...'

Sunday, 18 July 2010

Bushy Park Walk today in aid of the MND Association

Well, we thought we'd never get there and when we did, we almost didn't find the Walkers, but although we were late to arrive, I am proud to report that I stayed the course and walked my five miles - and even caught up with our fellow MND Association members, Gerry (pictured with Roch), his wife Pat and their daughter Clodagh, with her husband John. We finished the Walk together. So, been there, done that and have the (rather unflattering) tee shirt to prove it! I have been touched by the number of people willing to sponsor me and I am thrilled we managed to go along and support the local Group. So let the cash roll in People!
I enjoyed the walk a lot - I realised that it was hard for Roch to be there when he couldn't participate and I did offer to go along by myself, since I was the one who had looked for sponsorship, but he came along in the end. There will be stuff to process now.
In other news: back to King's College Hospital on Thursday. This will be interesting. It looks like we may not have an appointment with Professor Al-Chalabi, which is disappointing. However, the interim appointments Roch has attended at the West Middlesex Hospital with the local Neurologist have been pedestrian to say the least. He has not felt reassured and describes the experience as 'monitoring his decline'. Somehow, this is not our experience with Professor Al-Chalabi. We shall see. The appointment was brought forward by the Motor Neurone Clinic there, and this was a welcome development for us. We have had our own development and would like them to give us their professional opinion. While in Venice, Roch suddenly lost a degree of power in his right arm. He can't extend it as far as the left now, or lift it as high as before. It was so sudden we wondered if he had strained it in some way. But, hey, it's probably the monkey again.
Today Gerry was saying it's day by day - he wakes up not knowing how he'll be, whether he'll feel the same or if there'll be another change. It's the same for Roch. But Gerry was also keen to say that he adapts to the change, and finds some other way of doing things. (This is a man in a wheelchair, with a peg for feeding and who can barely form words- Go Gerry!). Roch can still lift pints with the right arm, all the way to his lips - and that's important, believe me. Let's get our priorities right.

Saturday, 17 July 2010

Venice and The Kindness of Strangers...

Well, we're back from Venice and we had a wonderful time. There are so many things I could write about the trip and I do think it's worth recording many of our experiences, so bear with me. It's not the most disabled-friendly city in the world, but he managed really well. We saw the physio before we went, and she agreed that two sticks would be a good idea. There are always crowds of people in Venice, and using two sticks alerted them to his vulnerability and allowed for a degree of space around him. He can certainly move faster than when using just one. People were very understanding and sympathetic. From the old Italian woman (70's?) who helped him off the bus in the Piazzale Roma when we arrived from the airport - I wasn't sure how he would feel about that - to the man who himself had difficulty negotiating the steps on a little bridge. He saw that Roch needed to be by the balustrade more than he did himself, and as he passed by, he patted Roch on the shoulder, muttering in Italian (We're pretty sure he was muttering in sympathy but for all we knew he could have been cursing Roch for being in his way - I don't think so).

We had some interesting encounters. We met Larek, an American who asked Roch straight out why he had to wear his foot-ups (we were travelling on a water bus -vaporetto- at the time). This led to a conversation about the disease and Larek was keen for Roch to get an opinion on the effect mercury has on the nervous system. Lots of research is being done, he said, on the detrimental amounts of mercury in the water in The States. He praised Roch's positive outlook but the real moment for Larek came when Roch told him his name! Larek was overcome with a sense of coincidence or happenstance, if you like. He was in Venice, writing a pamphlet on St. Roch as he has an interest in saints with a dog in their story. I wasn't sure how Roch would react to this guy, but they ended up having a good conversation. I don't know how much the other travellers understood. Larek's little girl Angie was sure gettin' bored. We met up with him by chance again later in the week and photographs were taken, greetings exchanged. A nice guy. Maybe a bit too spiritual for Roch.

How was the travelling, you ask? Well, thereby hangs a tale. I think I'll leave the return journey to a later post, but on the way out well, where are you now Mandy? The wonderful Mandy. I had, of course, requested Special Assistance when booking. When we arrived to check in at Gatwick, the Easyjet queue was awesome (thank you Larek) in its length and I was frankly appalled. I left Roch with the case in the queue and approached the Special Assistance Desk. First of all, I had to report that the Sp Ass telephone downstairs had been vandalised, so we hadn't been able to call ahead for help to get to Check In. I explained this at the desk and was met with an expressionless stare from a hard faced blonde woman. She told me they knew about this and 'We're working on it.' Not fast enough love. However, I learned from my father many years ago to meet soulless officialdom with a pleasant demeanour (at least to start with) and I expressed my gratitude to hear that Gatwick Special Assistance were on the job. I then went on to say that it would be quite impossible for my husband to stand in the Easyjet queue and that we had requested help when booking. Judging by the look on her face, Blondie had about as much interest in offering assistance as the desk she was sitting at. In fact, the desk was showing more interest. But before Blondie had time to open her mouth, the woman sitting next to her stood up and introduced herself. It was Mandy, our Fairy Godmother. Mandy turned to her colleague and said simply, 'I'll deal with this', and so she did.

Off we went, collecting a wheelchair on the way. 'Don't you worry, love, I'll explain how it all works,' she assured me. She would brook no argument from the man himself. Less than five minutes later, she had Roch in a wheelchair at the top of the gigantic queue, straight in there. A stocky woman, Mandy, strong in mind and body. I got the impression that whatever she made up her mind to do, you just didn't stand in her way. And no-one did. From the check in desk to the Special Assistance in Duty Free, where she deposited us to wait for our Gate to be called, it was smooth and trouble free. Mandy looked after us and we had cause to look back with nostalgia on our dealings with Mandy, let me tell you. On the outward journey, we were well looked after. Graham took over from Mandy to bring Roch to the Gate, after a late call for the flight. He was determined to get us there on time, and kept up a polite conversation until leaving us right at the aircraft door. Graham has highly recommended a cruise experience to us - maybe for next year? He and his wife (he's Australian, she's from the UK) enjoy a cruise - but he advises us to choose one of the bigger ships - better disabled facilities.

A pleasant, hassle free trip shouldn't depend on the kindness of individual Special Assistance people or Airport officials, but by the time we were home again, I would realise that in the real world, it does. I would also realise that Roch needs a Carer now when travelling in a way that was not necessary in February, when we went to Tenerife, and I have to be up to the job.