Tuesday, 31 May 2011

Breaking news

This was a bit scary. We were on the deck 12 right next to the storage plant when it exploded. We saw the top of the tank being hurled into the air followed by a ball of flame. We really were as close as the picture suggests.

Jake will be dining out on this for years


we were a little shaken but no more


Journal Interlude

Despite my biggest concerns about the holiday not proving to be major issues, I am struggling to get into the holiday spirit at the moment and I hope I will soon. The combination of very intermittant sleep and the effort of getting around is exhausting, hopefully at least the sleep will improve. More than last year I am finding the inability to participate in almost everything on offer, fairly depressing. I was at least still eating and drinking last year, albeit with difficulty but it is just another thing struck off the list now. Being in an environment where hundreds of people are chatting, eating and drinking or relaxing in a hot tub is difficult. I know its difficult for Tracy, not having someone to share these activities with, and I don't want to cast gloom over everyone's holiday but with being so tired, I know I am not doing a good job at hiding all this.

Although sitting in the garden day after day is fairly boring after a few months it is a good method of avoiding all the reminders. And here there is no escaping them. It probably illustrates a lack of acceptance of the situation and proves a significant amount of denial.

I am trying to focus on the enjoyment that the boys are having, which is why I went with them to the 50s American diner themed restaurant this afternoon, so I could watch them enjoying the enormous burgers and ice cream sundaes. But it was torture watching, the food looked so delicious. It makes me feel quite selfish; my frustration and jealousy was outweighing my ability to take pleasure from the boys enjoyment of something.

I guess it's always the danger when returning on the same holiday after the first one was so good. This year was never going to be as good, I hope I can start to get used to this year's version soon and enjoy it for what it is.

OK, whinge over. Day 4 report to follow later once Tracy and boys return from their excursion into Gibraltar.


Monday, 30 May 2011

The Cruise 2011 Day 3

still at sea today but weather is much warmer. The boys have done the climbing wall and spent a couple of hours in the water park. We went to the first of the two ice shows this afternoon. We knew most of the shows would be unchanged from last year but they are good enough to watch twice. We are currently sitting in the Viking lounge enjoying the music being played by a string quartet, although it is being punctuated by the rather less attractive sound of the three 10 year old boys who have managed to find us. Later we are going to the 70s parade, after which we will be ready for bed. (

As I feared the boysattention isn't being held by the activities available and we are getting very little time to ourselves. I feel that the kids club is going to be changed from an optional activity to one which is compulsory.

Sunday, 29 May 2011

The Cruise 2011 Day 2

Jake drew the short straw of sleeping in my room last night. Or rather he was bribed with an extra ten dollars on his arcade gaming card for 'volunteering'. It turned out to be a pretty good deal as to Jake's surprise I wasn't as high maintenance as he expected, in fact he didn't even have to scratch my nose. Needless to say Daniel and Luke are now competing for tonight's shift.

So the three main things I was worried about on the cruise were sleeping, wheelchair operation and using the loo. I will spare you the details on the latter other than to say it was possible. The sleeping, based on one night, seems to be OK. I supervised the rearranging of beds, and with the bed guards I procured on ebay, managed to replicate the setup at home. This meant I wasn't stranded on my back. The wheelchair operation however, is proving difficult. Not impossible, but very difficult. Although I can travel short distances indepenently, manouvering in tight spaces is very tricky. And even the trip from the cabin to the pool deck is exhausting, so just touring the ship for something to do is not an option this year, which is a shame.

This is the first of two days at sea en route to the first stop Gibraltar, so the view from my blogging spot is of uninterrupted ocean with just the occasional oil tanker to break the monotony. The boys have already done many of the activities that were spread over several days last year. Obviously this time there isn't the surprise or novelty factor for them, so combined with the extra four days, I just hope boredom doesn't set in on day four!

Tonight we are going to the captain's reception, after which Daniel has a full evening itinerary planned for me and him. I hope I can manage it. I am so much more tired than last year; I can't see me at the crazy golf at midnight this year.

The Cruise 2011 Day 1

well I made it. We left Southampton at 5pm for the start of of our 14 day cruise. I will try to update the blog daily although they maybe fairly brief! Not much to report so far other than watching Man Utd loose to Barcelona. Everyone fairly tired so not a late night. Its strange being back. It feels like only a few months since we were here last time.

Monday, 23 May 2011

The Hospital Visit

Last week I went to Kings to get my ventilation equipment setup. I was very reticent about staying overnight but I had managed to arrange a carer to accompany me and stay overnight, and I had got a floor stand for the computer so I knew communication would be possible.

The respiratory consultant had gone to a lot of trouble to get everyone upto speed on my situation. When we arrived on the ward the ward sister greeted us by name and showed us to the bed. A few minutes later the physio arrived to escort me to the chest unit where we were immediately seen by the respiratory technician. I was getting the impression that my reputation for being a pain in the arse had preceded me and they wanted no room for complaint. Maybe the system is just better than I have previously given it credit for.

We proceeded to setup a ventilation machine and try out different mask types. The nasal masks were the neatest option and allowed me to operate the eyegaze. However the inward pressure of the air combined with a weak soft pallet and poor lip strength, caused the air to puff my cheeks out and escape through my mouth along with all the excess saliva I have. So I needed a full mask which applied equal pressure to my mouth. This solved the problem but was less comfortable and prevented the eyegaze system from working. There weren't any more options so we agreed to do the overnight tests. The excess saliva was still a problem because although no longer running down my chin, it was difficult to swallow with the pressurised air being blown in. It is a common problem for patients with bulbar (throat, tongue and lips) involvement and can prevent its use.

We returned to the ward with the equipment we had agreed on, and I had some mouth drops to try and dry my mouth. Forty five minutes later there was no change so we tried the ventilation again for half an hour during which some more settings were changed. By the end of this session it seemed to be working ok but I still hadn't tried it in bed, and with the physio leaving at 5 there wasn't going to be a chance to try it. But I had been impressed with the amount of time everyone had spent.

I didn't request to be transferred to the bed until 945 and it was 1030 when I was finally in. They had very considerately provided an air mattress but I knew immediately it was a problem. They are designed to prevent pressure sores by filling alternative pockets with air. But they also effectively prevent you from moving because any pressure applied to facilitate turning is ineffective because the mattress just absorbs it. With no computer yet, I tried to indicate the problem before the hoist and sling were removed. After 5 minutes the penny dropped but the night duty nurse said they would change it the next day. By now the sling had been removed from under me. The nurse returned ten minutes later and with some reluctance offered to change it. But it was now almost 11pm so I couldn't face being hoisted twice more while they changed it.

Between 11pm and 4am I tried the ventilation for three sessions, the longest being an hour and a half. I didn't manage any sleep. The mask leaked quite a lot because of the way I turned my head to the side. The nurses kept saying it was fine because the ventilation pump alarm wasn't sounding although I could feel the air on my face. My carer was more helpful but ultimately the mask wasn't suitable. I gave up around 4am to try and get some sleep, which I managed around 430. So I was extremely pissed off when the nurse woke me up at 5 to take my blood pressure. Why do they do that?

I didn't sleep after that and just waited for the consultant to do her rounds.

I wasn't surprised when she said she wanted to keep me in for another night. I just couldn't see what it would achieve other than two consecutive nights with no sleep. Unless the overnight nurse would make useful changes if there were more problems, it would simply be a case of try it and see. It just seemed a very ineffective and inefficient approach. I declined the offer but agreed to stay until the afternoon to try a different mask, which did seem better.

So I now have my ventilation equipment at home ready for when I need it. I have to say that the hospital did everything they could to make it as easy as possible. But the experience has only reinforced my opinion that the approach of trying something overnight and repeat until it works is not the easiest option for an MND patient although it fits in with hospital practices.

Saturday, 21 May 2011

Pink Floyd Stories - 3 Different Ones

When I was revising for my A levels in 1986, I was told that having music quietly in the background would help concentration, so my maths, physics and chemistry studies were usually accompanied by a Pink Floyd soundtrack.

Was it good advice?

Well put it like this, I got what I called a decidedly un-royal flush E, O, F; the 3 lowest grades! But it wasn't all bad; by the end of the final exam I knew all the words to Dark Side of the Moon, Animals and The Wall.

To blame Pink Floyd for my failure to have a university education is probably unfair because I think think the writing was wall a year earlier! But if they did contribute to my dismal performance, I should be grateful because if I had gone to university the following wouldn't have happened:

Get a job with a local IT company

Have a financial advising company as my first customer

Use this company for my own financial advice

Be persuaded to get life insurance and permanent health cover

Now have financial security for the foreseeable future

So I should also say thank you to my good friend Simon Gibbs for introducing me to their music in the first place. Simon was obviously better than me at multi-tasking when he was seventeen as despite knowing every Pink Floyd lyric verbatim, he still went to a top university and eventually gained a PhD.

So to get back to my original topic, last month we went to Wimbledon Theatre to see a Pink Floyd tribute band called In The Flesh. We hadn't heard of them so we didn't know if it was going to be a big disappointment or something worth seeing.

On the night, our hopes weren't raised by seeing the theatre barely a third full; we sat waiting for the show to start. At 7 30 the lights went down and on walked four middle aged guys. First impression was if they sound as dissimilar to Pink Floyd as they look, we would be home in time for Eastenders. I wasn't expecting lookalikes but I was maybe expecting a bass playing and lead guitar playing singers. Instead, there was a keyboard playing vocalist and a bass player lurking in the shadows of the drum kit.

They opened with the song after which they had named themselves and within a few seconds I wouldn't have cared if they had been transvestite midgets, riding unicycles. They sounded awesome. And they continued to sound awesome for the next two and a half hours (other than for twenty minutes around the middle of the show when they stopped for the interval).

They played songs from every era including the twenty minute long Echos and plenty from the more familiar Dark Side of the Moon and The Wall. The musicianship was brilliant; I don't think anyone can play a Fender like David Gilmour but this was pretty close, the female vocalist even managed a decent rendition of The Great Gig in the Sky and an original Hammond organ helped create a very authentic sound.

The billing had stated the running time would be three hours so when the final song of the encore finished at 10pm I was rather disappointed; I could have listened for another two and a half hours.

It was a thoroughly enjoyable evening and they deserved a much better turnout. We left wondering whether the live performance of The Wall by Roger Waters that we had booked to see a month later would actually be as good. We just regretted not having taken the boys, so we have booked to see them again in June
I haven't finished with the Pink Floyd theme yet, so if you aren't a fan and haven't already started watching something on iPlayer, now is the time to do so. If you are a fan, when I say this next bit is about the most amazing gig experience ever, you will already know where this is going. And if you weren't at the O2 on May 12th will be feeling very envious!

We booked to see The Wall Live almost a year ago. We almost didn't book at all because despite it being extended to six nights, the only wheelchair spaces left were right at the back of the arena. Also, as I have explained before, I just can't think about events that far away, let alone look forward to them! But Tracy convinced me that it would probably be the sort of show when proximity to the stage wasn't that important. So with the success of the tribute band show a month earlier I was starting to get more excited by it. I had also managed to persuade one of my carers to come at midnight which would avoid the stress of late night bedtime transfers.

The journey there was the usual hassle through the heavy traffic of unsightly South London boroughs although Tracy's brother had managed to get us VIP parking which made things easier.

We were almost the first ones in the arena when doors opened at 6.30 after buying the obligatory merchandise!

The show started just after 8.00 with the album's opening track, accompanied by pyrotechnics. I won't bore you with a song by song analysis but I copied the following from a review in The Guardian as it was quite amusing.

A quarter of an hour into his solo performance of The Wall, Roger Waters unexpectedly calls a halt to proceedings and announces that, through the miracle of technology, he's going to sing Mother as a duet with footage of himself singing the song with Pink Floyd nearly 30 years ago. "If that doesn't sound too narcissistic," he adds. This rather prompts the response: mate, you're performing a 90-minute rock opera so extravagantly tricked out with 3D animations, pyrotechnics and inflatables that it has allegedly cost £37m to stage; what's more, it details how your parents, education, marriage and being in Pink Floyd all contributed to your increasing sense of alienation in the 1970s. Worrying about narcissism seems very much like shutting the stable door after the horse has bolte

The Wall has always been the most problematic of Pink Floyd's multiplatinum albums. Written in the aftermath of Waters spitting in a fan's face during a Canadian gig, it sought to illuminate the psyche that could lead a multimillionaire rock star to do such a thing, although a cynic might suggest that the greatest insight it gave into the psyche of a multimillionaire rock star was unwitting: it variously pointed the blame at Rogers's mother, his teachers, his ex-wife, sundry groupies, the music industry, the government, the South Ruislip Girl Guides, etc - but noticeably failed to include a song called I'm Sorry I Spat In Your Face. Perhaps it's on the forthcoming box set

The entire tour is over 50 shows and there were rumours that David Gilmour would make a guest appearance playing Comfortably Numb at just one performance. We were at the second show of the tour so didn't have high hopes. But when the entire audience got to their feet and applauded as the guitarist on top of the wall was illuminated, it was obvious we had struck lucky. This was only the 3rd time in 30 years that they had played together and only the 2nd time at a public event. I know this makes me look rather sad but it was one of those moments. OK, they are just two guys with guitars but they created the soundtrack to my life as a fifteen to seventeen year old and therefore inextricably linked to many significant 'firsts'. It was something which you knew wouldn't last long and probably wouldn't happen again so I felt this immense pressure to absorb every note and stamp the moment indelibly on my memory. It was over too quickly but I was just happy I had been there!

By all accounts I was not alone in my reaction; many people (ok, many men) were in tears by the end of the song, for once I wasn't one of them!

The whole show was simply incredible. A total sensory overload. The following video is of THAT song and if you don't fancy the entire 8 minutes, go to 6 minutes 15 seconds to see the visuals we were treated to.

Monday, 16 May 2011

Nothing is simple

Finally got a chance to write something. Seem to have spent the last couple of weeks just bogged down sorting out setup of a new wheelchair and this hospital visit to get this ventilation equipment setup. I have given up on doing this at home, nobody other than me has the appetite to pursue it so I have given in to an overnight hospital stay. I go in this Wednesday but I have managed to get a carer to accompanying me and stay overnight.

The new wheelchair arrived last week but won't be setup until tomorrow. This is another stressful event. The reason for changing it is so I can do more things without having to use the offroad wheelchair. The existing indoor wheelchair is completely hopeless outdoors, is very uncomfortable when travelling in the car and has insuficient battery capacity to last a day when powering my eyegaze computer. The new wheelchair will address all these issues BUT it is a much bigger chair and although it technically fits everywhere, there are just millimetres to spare in some areas and I might struggle with my very limited control ability.
Everything has to be so exact now for me to still do the last few things I can manage alone.

Millimetres Matter.

Five millimetres inaccuracy with elbow positioning on wheelchair armrest will make operating it impossible. An inch or two too far left or right in bed will mean I can't operate the bed controls with my nose. So an entirely different wheelchair has plenty of potential for causing problems. Some aspects won't be immediately apparent. Seating and headrest positioning and design may initially seem fine but after 10 hours it might be excrutiatingly painful. So I need to keep the old wheelchair available for a few weeks so I can revert back while I wait for the next available free slot from the Wheelchair Services. This in turn requires everything on the current chair to be left intact, including the computer mounting system, and this means I have had to arrange for duplicate accesories to be fitted to the new chair AND arrange the relevant people to visit at the same time to fit them.

And of course everything has coincided with the hospital visit. I just hope it is all worth it and I don't solve three problems only to create three bigger ones!

This belt and braces approach has to be employed in almost everything I do. I don't consider myself to be a pesimistic person but I have always had the philosophy of 'expect the best outcome but prepare for the worst'
I think it has always served me well; in business, very few of my projects over 20 years went tits up because of considering all the points (including people) of potential failure and either designing them out or having a plan in place to deal with them if they occurred. But I also knew that when something completely unexpected happened I would somehow be able to get it resolved.

But now my ability to sort out the unexpected is severely limited, so it is more important than ever for me to have every base covered. It is time consuming and mentally exhausting but I can't live any other way.