Wednesday, 28 December 2011

My present

My Christmas present, an aquarium, unfortunately Cheryl-despite-being-a-male, the most impressive looking, has already gone to the great fishbowl in the sky. Apologies for Daniel's shakey videoing

Saturday, 24 December 2011

Christmas Eve

The boys are still hedging their bets so a final trip to the fabulous Painshill Park grotto, although sadly I couldn't manage it this year

Wednesday, 14 December 2011

Disappointing drug trial results

I have just heard from Kings College Hospital about the Trophos trial they have been running and that I have participated for 2 years. The results have been released and it appears that the drug had no effect on disease progression.


Friday, 9 December 2011

Tipping Point

Its been a tough week. First I had this chest infection causing constant coughing. Coughing is bad on many levels; it's tiring, it constantly interrupts eyegaze use, it's messy with saliva and snot everywhere which stays everywhere until someone is available to wipe it up. Coughing causes me to slip down in my chair which results in my weight resting on the back of my lungs, causing me to cough even more. Finally it makes it difficult to sleep which has been the biggest problem.

I am used to coping with sleeping badly; 4 or 5 hours broken sleep is fairly normal but 3 nights in a row, watching each hour passing for 11 hours is awful. 9am arrives and you have that buzzing sensation as you crave sleep. I am sure everyone has experienced it for a night but after 3 consecutive nights of it I had been awake for 80 hours and was suffering from the shakes and waves of hot and cold flushes. I was so tired but I just couldn't fall asleep. Last night, after 3 nights trying various medication, I finally got a few hours sleep and feel a little more human today, although the cough has returned! I have felt very near my tipping point this week. To add to everything, my excellent regular carer has gone back home for 2 weeks and may not return. '

I have at least been able to enjoy my music again having treated myself to one of these Bowers & Wilkins Zeppelin Air speakers

It was nice to be able to spend money on myself which wasn't just more MND related equipment. These speakers, apart from sounding fantastic have Apple's Airplay technology which allows me to stream music from my Itunes wirelessly so I haven't got to put up with the tinny internal speakers. '

Wednesday, 30 November 2011

pissed off that I am going to miss deep purple at the o2 tonight because I have got a chest infection and feel completely crap .
Everyone has just left for tonight's gig, I am so pissed off that I am stuck here. Annoyingly my cough is much better than yesterday but I am so tired after not being able to sleep last night. Initially only Jake was going to go, so I was planning on watching GI Joe with luke and daniel. But they all decided to go, which I am pleased for them about but I feel very left out. My chest infection and fatigue wouldn't have stopped me going; it's this f***ing disease which has f*** ed up another enjoyable event. I am so sick of it.

Friday, 25 November 2011

on a more positive note

The boys stole the show at their school's Thames Ditton's Got Talent show. Luke did particularly well keeping it together when his bass drum tried to escape halfway through the song. Unfortunately the school copped out on having a winner, but instead picked the best 4 to perform at the school Christmas fair on Sunday. A little unfair having worked so hard, but the audience reaction was fairly conclusive.


Wednesday, 23 November 2011

Battle Weary

I am really struggling with food at the moment or rather the lack of it. I haven't tasted anything other than toothpaste for 18 months now but for the last few weeks it's been particularly hard. Smelling cooking in the house and being near people eating aromatic food is really getting to me. In the scheme of things its actually fairly low on the list of losses; if I could regain something, speech, walking or the use of my arms would win every time but for some reason the inability to eat anything is frequently pissing me off. I am regularly tempted to get something pureed and attempt to eat it; how difficult can it be, I keep asking myself. But when I tried it a year ago, I ended up coughing and spluttering everywhere and it won't be any easier now.

The latest problem is waking up with mucus having accumulated on my chest, presumably from saliva being aspirated during sleep. My cough when lying down isn't strong enough to dislodge it , so I am worried that it will lead to a chest infection which would be seriously bad news. There is something called a cough assist machine which I guess I should investigate although it wouldn't help at 4-30am without someone to operate it. I have already given some thought to overnight care which I can't see anyway of avoiding when I start using ventilation, but it seems somewhat excessive at this stage. But this ineffective cough problem has been occuring for a week so I know I should tackle it rather than waiting until I get pneumonia.

My apathy for arranging yet more equipment and care is probably symptomatic of my often prevailing 'determination fatigue'. Being confined to inside the house by the cold weather doesn't help and the longer it goes on, the harder it becomes to make the effort to go out when the opportunity arises.
As I mentioned in a recent post, there hasn't been any dramatic changes this year and I imagine that the subtle changes aren't noticeable to anyone else leading them to think 'Steve's doing OK' and compared to the friends I have lost this year, I am. But life is far from OK, the immense effort to do anything other than sit and stare at the TV is slowly crushing me and the frustration experienced when eventually no amount of effort is sufficient to achieve something is soul destroying. Two months ago I would spend 45 minutes trying to turn on my side in bed, sometimes succeeding, others not. Now I have to lie on my back all night. I sometimes have to literally will my hand to move my hand 1mm to turn the wheelchair. But increasingly my carer has to drive me. It's so hard maintaining the will to fight when defeat has to be accepted constantly.


Monday, 14 November 2011

Netic's Debut Track

This is the boys' own song which they will enter and hopefully play at 'Thames Ditton's Got Talent' next week. They would love to get loads of Youtube hits so please share this link


Thursday, 10 November 2011

Red Hot Chili Peppers

Last night we took the boys to see the Red Hot Chili Peppers at the O2. It is a long time since we had seen a band that we hadn't seen previously but I think that they are one of those bands that any self respecting rock fan should be able to tick as 'seen' on their gig bucket list!

I had been dreading the long journey to the venue and had been agonising over which wheelchair to take; the indoor wheelchair with bone shaking, back jarring potential or the comfy off road chair which is very difficult to drive, having not used it for probably 2 months. There are numerous other factors for and against both wheelchairs which I won't bore you with but I decided on the bone shaker.

The journey through rush hour traffic took over 2 hours and wasn't helped by the Tomtom which was hell bent on shaving seconds off the route by taking "shortcuts" down speed humped residential streets! I appreciate that for someone with no knowledge of the area they have no option but to follow the instructions but it drives me nuts. And worse still is that an entire generation is growing up without the faintest clue how to get anywhere beyond their local shops. I am not advocating that people should have conversation boring levels of knowledge ("if I were you geoffrey I would take the B5479 to avoid the dog leg junction on the B5476 near Buttocks Hole") but knowing the M11 won't get you from London to Cardiff very quickly is quite useful if your sat nav is having a mad moment.

Anyway, having left early we arrived in plenty of time and thanks to the traffic speed and Tracy's navigation around pot holes it wasn't too uncomfortable. Tracy's brother had again managed to get us into the VIP parking area which is right next to the venue, helping me greatly. I am going to write to O2 asking why disabled parking isn't situated here instead of within the main car park (resulting in it still being several hundred yards from the arena)

The band came on at around 9 and we were grateful for the boys being issued ear defenders because despite being at the back of the arena, it was LOUD. In the circumstances, not being able to get wheelchair spaces at the front (you are only allowed one accompanying guest or carer, another point for my letter ) was probably fortuitous. I guess my concerns about the travelling had prevented me looking forward to the gig but within a few minutes I was enjoying the music as much as the relief of having got there! They played tracks from the new album and plenty of older hits (all fully clothed; I had told the boys about their previous stage attire comprising of nothing other than a strategically placed sock)

They sounded fantastic and hopefully illustrated to Daniel that bass players don't necessarily have to be in the shadow of an egocentric lead guitarist. The Chili's bassist, Flea is claimed to be one of the world's best and its easy to see why. He is apparently also an accomplished trumpet player, so Daniel may be on to something!

They played for an hour and a half which I think is a little lightweight but it was still a great gig, although Anthony Kiedis really should rethink his Phil Oakey meets Hitler look. Jake and Daniel seem to enjoy most of it but Luke was less enthusiastic, hopefully they will have good memories of it.

The trip back was under an hour and although far from comfortable, it was bearable and I will hopefully be a little less stressed about our two remaining gigs; Deep Purple in 2 weeks and Manic Street Preachers just before Christmas. We are particularly looking forward to the Manics as it is a one off show celebrating 25 years since their debut single and they will play all 38 singles over 3 hours. And we have wangled wheelchair spaces at the front of the arena!

Friday, 4 November 2011

Tori Amos Gig

On Wednesday we went to the Royal Albert Hall to see Tori Amos. Have have been a fan since her first album around 20 years ago, and although I am less keen on more recent albums, she is still a fantastic singer, pianist and performer.

As usual I was stressing about going; which wheelchair to take, surviving the journey, getting between the car and venue etc. Having still not tried the car with the new suspension, I had decided to take the more comfortable outdoor wheelchair. But having completed the lengthy process of transferring me, computer and feeding system, I discovered the batteries weren't charged. And before you think the same thing as my carer said, I had checked before but... Charge indicators on wheelchairs are pretty hopeless. Firstly, when the first of six lights goes off you haven't used 1/6 of the charge but around 70%. Secondly, after charging a flat battery for just 30 minutes of the required 8 hours required, the indicator on the wheelchair will read as full then rapidly fall when the chair is used. And that is what happened so everything had to be transferred back and I just hoped I wouldn't be shaken out of the wheelchair en route!

The journey was predictably slow through rush hour traffic although that meant less bouncing around for me. Our seating position was excellent; close enough to feel part of the show but far enough back to have the best sound (and not be distracted by the rather disturbing results of excessive botox and shocking plastic surgery)

The performance was excellent as usual. She had a contemporary string quartet accompanying her which were amazing in their own right. The setlist comprised of a few too many obscure songs but there were enough favourites to keep us happy. Tori Amos has always had more than her fair share of obsessive fans so there are frequent and rather cringe worthy whoops of delight to certain lyrics or gestures. She played for 2 hours including both encores, one of which included 'Winter' which has always been one of favourite songs from any artist but recent events have made its words very poignant and emotionally charged. The first time I played it after being diagnosed it reduced me to a sobbing mess and I simply can't play it anymore. On Wednesday I managed just about managed to hold it together although a couple of tears still escaped.

If you haven't heard it and have 5 minutes, have a listen

The journey back was pretty quick but very uncomfortable. The route through Fulham and Putney has terrible roads and obviously without the traffic we had been slowed up by earlier, I started doubting whether the suspension modifications had really made any difference. I was really wiped out by the time we got home and wondering how I was going to cope with the three much longer trips to O2 gigs between now and Christmas.

But it was a good evening and a very enjoyable.


Saturday, 29 October 2011

A Less Bumpy Ride

 I have Motor Neurone Disease and my weakening muscles had made travelling in my wheelchair in my VW Caravelle extremely uncomfortable. I had always been aware of how terrible the suspension was; it managed to combine the worst traits of both an overly soft and hard setup, crashing over every bump and ridge while rocking horribly over uneven ground. I didn't hold much hope of finding a solution when I typed "suspension modifications" into Google.

Aurok Ltd were one of the few companies that came up so I dropped them a quick email. Within a couple of hours I had received a reply from Dave, the Managing Director offering to come up two days later to look at the problem. My requirements for suspension modification were rather different from most of Aurok's clients. I was impressed by the response as the company aren't just some garage doing run of the mill work. They are the UK sole distrubutor for leading manufacturer Ohlins, and are involved in designing suspension setups for many types of motorsport including A1GP (F1 without the egos) so modifying my Caravelle wasn't going to be the most lucrative deal for them.

After test driving it, they agreed that it was pretty poor and although it was never going to ride like a Bentley, they could probably improve it to a degree with some specialist dampers. Understanding the difficulty in us getting the car to their workshop, they offered to complete the work here when the parts arrived. Yesterday they returned and completed the work. As anticipated the improvement is subtle and I will need a longer journey to judge fully but it's definitely better and Dave offered to return if necessary to adjust them further.

I know that based on what they quoted that they can't have even covered their costs and I am very grateful for the effort which they have gone to. They obviously empathised with my situation and reacted as quickly as possible without taking advantage financially. It is so refreshing to deal with people with this attitude. Being disabled, one gets used to paying massively inflated prices for any product because it has 'disabled' in it's description or contend with delays which I literally haven't got time for.

So a massive thanks to Aurok for helping me keep mobile for a bit longer.


Friday, 21 October 2011

I agree with Ewan Mcgregor's piece of advice.... most of the time

Its been a while since my last blog, getting started on an entry is the biggest barrier, especially if there isn't a specific subject I want to vent about. But I don't want let it slide to a solitary monthly entry because people will stop following it. So I am afraid this entry is being driven by this rather than any inspirational thoughts or events.

Let's start with the MND. I am still 'enjoying' a period of relative stability. My Functional Rating Score has been 12/48 since July 2010 and whilst there has been some deterioration over this period, nothing dramatic has happened. Unfortunately some of the subtle changes still have significant consequences; the strength in my arms might have only changed by 20% in the last year but it has severely impacted on wheelchair operation.

I don't know if this plateau is just one of those that can happen with MND or is related to the drug trial. The latter seems hard to believe as for the first 8 months of the trial there was no slowing of progression. Hopefully the trial participants will soon be told the findings of the initial 18 month trial period and which group each were in. So this may provide an explanation, and in the meantime I guess I should try and be grateful; another person I knew locally died 2 weeks ago. He was the third this year and just one of the many that have gone from the online community. I just wish this respite in deterioration had happened while I could still talk, eat & drink or use my hands; just one of those would have done.

Throughout the first year after diagnosis and for much of the time when I was steadily declining, the thought of dying was never far from my mind. And while that sounds pretty unpleasant, it does help one come to terms with the inevitable conclusion. Of course I still think about it but it hasn't dominated my thoughts to the same extent. After a year of living in this state, I am more preoccupied with the monotony of everything and forfeiting so much. Four years ago I had conditioned myself to the fact that I wouldn't be around in 4 years time and this in hindsight was overly pessimistic. More recently my worry is enduring another few years like this, as if that is the worst case scenario. There are certainly times when dying seems a preferable option but on balance I would normally go with Ewan McGregor's advice and "choose life". So when the more likely scenario dawns on me again, it hits that much harder.

Wednesday, 5 October 2011

Leaving Comments Should Now Be More Reliable

I know some of you have difficulty leaving comments on the blog, so I am trying the popup window option which is meant to be more reliable. As before you can use the anonymous option to save you signing in and just put your name in the comment (or not!)

Even if your comments don't appear on the blog, I still get them in an email

So if you have been put off leaving comments before, try again now

Tuesday, 4 October 2011

Controlling Bed with Eyegaze Control

My latest adaptation to solve the problem of operating my bed is now working. My bed has powered adjustment for elevating head, knees or the entire bed. Although I only need to raise the back support currently for more comfortable TV viewing, eventually I will need it to make breathing easier. Until now I have relied on the standard handset controls hung on the bedrail which I operate with my nose. But recently I have begun to struggle with this method so lowering the backrest after finishing watching TV is now very difficult and on a couple of occasions has nearly been impossible. But more significantly, if I wake feeling short of breath I can't raise myself up.

The only solution was eyegaze control and the first option was to use the infrared remote control on my computer. This would require the bed to be fitted with an infrared receiver either from the manufacturer or one made by myself and Chris. When I enquired with the supplier, I was told it was available but never been supplied in the UK before and was £200. However I knew that this was going to be the easiest option, so it was ordered. Unfortunately the first unit was faulty but a week later the replacement arrived, so it was on to the tricky bit of programming the eyegaze. I say tricky only because of the logistics involved. As great as my eyegaze software is, a significant weakness is the inability to use eyegaze control to modify it so frustratingly I need to rely on the software company to make changes remotely, now I can no longer use a mouse! But this time I also required someone here to push the bed's remote control buttons at the right moments so my software could learn the infrared codes. It was relatively straight forward in the end and after a couple of sessions we had it sorted.

The video shows the setup working. Each button press triggers only a small movement. At the start of the video watch the backrest move each time I 'click' the screen button by looking at it.  Its not ideal but it's better than too big a movement which could potentially move me out of eyegaze range and stranded.

Saturday, 24 September 2011

Were they really that cute....

I have been going through old video of the boys and converting it to go on Tracy's iPad. We rarely watch old videos but I am pleased I spent the time over the years editing it into watchable footage. I was watching one today and thought I would stick a bit of footage up. I can't believe how angelic they looked. I couldn't watch these videos after being diagnosed and it is still difficult now but they are a reminder of what I did, which can't be taken away.

Tuesday, 20 September 2011

Goodwood Revival 2011

On Sunday I went with Stuart and brother-in-law, David to the third and final motorsport event this year; this Goodwood Revival. Its probably my favourite event as it has a wonderful atmosphere with many people dressing in civilian or military period clothes from the 40s and 50s. I have been twice before and knew from previous circuit laps that a good viewpoint could be had just a few hundred yards from the entrance. So with wheelchair control now dependent on someone else we established our spot for the day. The day is a mixture of races, track parades and air displays with a pre mid 1960s theme. We arrived in time to see the end of the first race finishing under the safety car, following a rather expensive meeting between a chicane wall and a vintage Aston Martin. The next race was motorbikes and it coincided with the first heavy rain that had been forecast. With waterproof covers and umbrellas deployed we managed to keep dry but we missed most of the race as our view was now obscured by a sea of umbrella canopies. We got a dry spell for the next race and the air display which was an impressive scramble reinactment with 10 spitfires, which is about a quarter of those left still flying.

The rain returned for the TT race which was a real shame. The one-hour, two-driver race has a spectacular grid of super-rare GT cars, driven by famous names past and present. The grid features a breathtaking £100+ million array of internationally-renowned historic cars. But the torrential rain spoilt it, initially because the umbrellas prevented me or Stuart seeing anything and then because the race was abandoned! The rain lasted almost an hour and everyone was cold and miserable and almost half the spectators left. We had no option but to stay as trying to go anywhere would have been impossible without me and more importantly, my computer getting soaked. Our perseverance paid off though with blue skies returning by 4 o'clock in time for the final two races. I am pleased we stayed because I was able to enjoy what it was that I had loved on my first visit to Revival; the very evocative experience of seeing and hearing these beautiful classic cars racing in the light of a setting, late summer sun.

I suggested a visit to the paddock before we left. This is another highlight of the event. Row after row of covered parking bays filled with almost priceless classic cars, many with an impressive racing pedigrees. Ferarri, Bugatti, Aston Martin are among the many cars that constitute what must be the most valuable collection in the world. It would have been considered simply vulgar to discuss individual values with anybody, but it is easy to reach an estimate of around a quarter of a BILLION. The fact that they have just been racing and have the odd battle scar to prove it is incredible.

So by the time we left I had almost forgotten about the rain. I hope Stuart and David enjoyed it too and many thanks to them for getting wet in order to keep me dry!!


Saturday, 17 September 2011

My latest invention

I have always struggled to find places to locate buttons where they are easily accessible but not able to be pushed by accident. This was particularly important for my new eyegaze reset switch. My eyegaze system is generally quite reliable, but occasionally something happens which stops me controlling it with my eyes and I have to rely on someone to restart it. If this happens when I am alone, I am completely stuck. So I now have a USB Box which I can connect a standard button to and it will restart Windows. But I didn't want the button getting pressed by accident, resetting everything. So I have made this additional control box.

My device will work with any button using the usual 3.5mm connection. It goes between the button and the device which it control and it only activates the device if the button is pressed 5 times within 7 seconds (this rule worked for me but it could be something different). I now have a button on the bed footboard and wheelchair headrest with which I can easily (but not too easily) reset the computer. Although the concept of the device was mine, my friend Chris has to take the credit for making the circuitry and packaging it so neatly.

Tuesday, 13 September 2011

Controlling Computers with Eyegaze Control

This won't be interesting to most of you but I stuck it here so I can point other MND sufferers here if they want a demonstration of what is possible using eyegaze computer.
I have recently written a presentation and recorded a video for two UK conferences where Sensory Software (who write the multi award winning Grid 2 software) will present it on my behalf. Hopefully the full presentation will be online soon, but here is the video on which it was based.

Hopefully it will show anyone considering eyegaze what is possible. I didn't include environmental control such as TV and DVD operation although I use this.
I use a bespoke setup. The computer is a Sahara Slate i440t PC from TabletKiosk,

the eyegaze system is from Alea Technologies,
the environmental control infrared transmitter is a TIRA module via USB, SMS messaging is done using Sierra Aircard 880 (sticking out of the top ). The tablet has a second battery pack and Sensory Software provide an amplification unit called a Powerbox 6 and a frame to bolt it together.

I sourced the mounting system and wheelchair power supply from another UK company.
I use Dameware software for remote access. It allows you to create an executable file which you run on other computers on your network. Once run you have permanent remote access rights even after a restart. It costs around £80 but it works well and I would highly recommend it.

Saturday, 3 September 2011

Summertime Blues

So the summer holidays are almost over and the boys start the final year of Junior school on Tuesday. Amazing to think they start secondary school next year. It doesn't seem that long ago since I was at Southborough Boys; I have never been an advocate of 'the best days of your life' mantra, but it is was a memorable seven years and I hope it will be the same for them.

I am struggling a bit at the moment with the groundhog day existence. The daily routine is almost identical everyday with the only variation being who I email to chase something I need to sort out. I have never been good at being unoccupied, that's not to say I never indulged in time wasting activities. I was always my most efficient and productive at work when I was under pressure dealing with ten things at a time, but once the pressure was off I found it easy to succumb to the temptation of web browsing or some other activity which wasn't strictly related to the task of generating new business. Fortunately I generally used to snap out of it quickly because I knew that the longer it lasted, the harder it would be. The problem now is that this self perpetuating scenario is very difficult to escape. Writing this blog is about the only productive thing I do and even this is very sporadic.

I think the other problem is that as a coping strategy I have to make myself numb to caring about things. By switching off the desire to eat nice food or have a beer,  it makes it that much easier. The frustration of not being able to join in with conversations is eased by avoiding getting absorbed by the discussion in the first place. When the boys are fighting I try and ignore it because if I don't,  the inability to intervene physically or verbally with any spontaneity just creates immense anger and frustration. So I have to block out thinking about or at least caring about 95 percent of my life pre 2008. I know this sounds a bit melodramatic but it is how I cope. The problem however is trying to maintain enthusiasm for the remaining 5 percent of my life which is still possible. It is difficult to keep this attitude of detachment selective.

Monday, 29 August 2011

A Busy Week

You probably spotted that my holiday diary ended early. I was aware that it was getting both repetative and gloomy. The Wednesday and Thursday entries would have followed suit so I didn't waste time writing them although we did have a nice evening on the Wednesday when David and Sarah, the farm owners, came over with a couple of bottles of wine and joined us for the evening. So in summary, not the best holiday. The travelling issues, wheelchair control and exclusion from so many activities combined to make it a rather depressing experience if I am completely honest.

Last week was a busy one by my standards with three outings in as many days. On Thursday evening the boys went over to my sister's to stay the night and we took the opportunity to go to the cinema to see The Inbetweeners movie at Kingston. We got into the TV program during its third series but have caught up on most of the others recently on CH4 reruns. Suffice to say it's not for those easily offended but it is possibly the funniest 'sitcom' in years and probably an insight into our boys social lives circa 2019.

Thursday was my Kings Hospital visit; always a chore, never a pleasure, even more so now with travelling difficulties. Previous checkup visits have been coordinated with the drug trial visits allowing me a) get an expenses paid taxi to save Tracy having to come and b) minimise the number of trips during the year. But this week was too early for the trial and also I might have needed help getting between the lung function unit and the neurology department.

The visits are a pain in the arse and if it hadn't been for the fact that they had ordered a new ventilation mask in, I would have cancelled it. The Palliative Care Consultant is perfectly pleasant but it's simply a chat and maybe a prescription to deal with the latest symptom; this time it was saliva control. But an email conversation and a fax to the GP would achieve the same in 15 minutes. The lung function tests were just a blood gas test and downloading the data from the previous nights oxymetry test, followed by a 10 minute session with the another consultant to discuss the results. Again, most of which could be achieved using the post and email. The whole trip takes over 4 hours. No significant changes in results, which I already knew but the new mask will hopefully allow me to use the eyegaze when I eventually need it. Next visit scheduled for December although if nothing has appeared to have changed, I might cancel it!

On Friday we took the boys to see Harry Potter at Kingston's 3D IMAX. I think this is only the second one of the series we have seen at the cinema and it was pretty good, although it was fairly similar to every other HP albeit with a bigger budget. Visiting the cinema in kingston is pretty easy, particularly after I discovered the fire exit route leading directly to the disabled parking area. It avoids the several hundred yard journey on the pavement to the main entrance and the two lifts inside. Tracy went ahead to get the staff to open the fire exit doors when we arrived and they are equally helpful after the film.

Tuesday, 23 August 2011

A Significant Breakthrough in MND Research?

This sounds like a significant breakthrough and of course its good news but it will take 3 to 5 years to develop a drug and prepare a trial, 2 years for the trial and 2 to 3 years to get approval if it works. I guess that missing a cure by 10 years is less depressing than missing one by 10 months but nontheless it was a somewhat bitter-sweet experience reading this news.


Saturday, 20 August 2011

Dorset - Tuesday

We split into two groups today; Jake, Daniel, me and tracy went to the tank museum and Sue, David, mum, Alisha and Luke checked out another local beach. We arrived in time to see the display and spent another hour looking around. After we went to the nearby Lullworth Cove and by 3pm the sun was out and I was sitting looking down on the beach where the dogs were being walked and the boys were paddling. It was the best weather so far and it was an enjoyable few hours. We got back to the cottage around 6-30 by which time Lauren (Sue's eldest daughter) had arrived to join us for the remainder of the week.

A plan had been hatched to return to Lyme Regis for a fish and chip supper. I would have liked to go but couldn't face another car journey, particularly the half mile rutted farm track. Two trips along that in a day is more than enough. Me and Tracy watched a DVD instead and everyone returned around 11pm. The boys had been allowed by David to drive his car on the private track, so were well chuffed.

Thursday, 18 August 2011

Dorset - Monday

The boys had their trailer ride around the farm this morning. They got to see the farmer's 'pet' grass snake which lives under some corrorgated metal sheets in a field. We then set off for Lyme Regis aiming to get some beach time before the forecasted arrived.

Despite the 40 minute drive i was looking forward to going. If you have read last year's entry, you will know it had been a highlight of the holiday so was always going to be hard to match. Arriving early afternoon, the car parks were all full including the totally inadequate 4 disabled spaces, so I got dropped off near the beach. Last year, having arrived later, the beach wasn't too busy allowing me to drive the wheelchair quickly across the dry sand avoiding getting stuck, and on to the firmer sand where I could easily maneuver and be part of the action. Today the beach was packed and the tents, windbreaks, beach towels and brollies strewn across the sand would be impossible to navigate quickly. So again I had to sit somewhere else from everyone else. People took it in turn to keep me company and after an hour or so, and the boys were getting cold, everyone came back up to the prominade for a picnic. The rain arrived shortly after so I made a dash for cover while Tracy and David got the cars.

We drove to charmouth, a couple of miles away hoping the rain would clear and the boys could do some fossil hunting. But the shop hiring the hammers had closed and the tide was in so Tracy took the dogs for a walk and the boys played on the beach. It was still raining so I stayed in the car.

Have to say that I haven't enjoyed today. I guess its all down to the effort / reward balance. Being bounced around in the car for two hours on top of all the other hassle and having a day like today is rather disheartening. Especially as last year had been so much better. The balance has tipped irreversibly. Everyone has done everything to make things as easy as possible and I hope my general lack of enthusiasm hasn't put a downer on everybody else's holiday.

Dorset - Sunday

Today we visited Abbotsbury about 10 miles away. There is a swan sanctuary which we last visited when the boys were around four. We wandered around for about an hour, Rasa drove the wheelchair most of the time, leaving me to do the fine tuning once we had stopped somewhere. After a picnic lunch we drove another couple of miles to Chessil Beach. This is a shingle beach with a ridge running along its length. Conveniently there is a boardwalk running up to the top of the ridge although it didn't extend far enough for me to see the water's edge where the boys were playing.

As I sat there I thought how this represented the best and worst type of activity similtaneously. I can enjoy the sea breeze and sunshine as much as everyone else, an experience unspoilt by MND

But I am unable to participate in the most enjoyable holiday pastimes, an experience completely wrecked by MND. Which one you focus on is a good indicator of ones frame of mind. To rub salt in, my excellent view of the car park all afternoon had afforded me a great view of a TVR Tuscan just in case I had forgotten another enjoyable activity.

After a while everyone came back up to where I had been sitting and we stayed another hour before leaving. .

Tuesday, 16 August 2011

Dorset - Saturday

Today we decided to stay around the farm and avoid driving. David the landowner is happy for everyone to explore the extensive acreage of the farm. A picnic was prepared and we headed to the field with the stream running through the woods; a great place for the boys to find all sorts of wildlife. We entered the field off the farm track but soon realised that I wouldn't be able to go further. I had made it down the sloping field last year but the bumpy terrain was too much. Having someone else drive the wheelchair over rough ground isn't an option. I need to 'feel' my way over ruts and bumps in order not to be shaken out of the chair, someone else can't do it. Also the steep slope would require the chair to be tilted at various points so wheelchair control would need to be switched between me and carer as the gradient changed. With eyegaze communication knocked out by the sunshine, I decided that it was going to be too great a challenge and returned to the house. Everyone returned a couple of hours later after sufficient wildlife had been caught. The rest of the day was spent at the cottage and after the boys decided that they wanted to camp, tents were put up in the garden. I had expected them to creep back in by 1am but they managed to stay out until 6.

Dorset 2011

we are back at the Dorset farm for a weeks holiday. As with the cruise, the success of last year prompted us to book this year's holiday as we left. And as with the cruise I really didn't know whether I would actually make it. This break is actually more challenging than the cruise where everything is on hand without having to go anywhere. Travelling in the car has become pretty difficult. Even though the outdoor wheelchair copes well with compensating for the car's awful suspension, it can't counter the effects of the physical forces involved with accelerating, braking and cornering. So with ever weakening neck muscles, its fairly exhausting. To complicate things, wearing a neck restraint isn't an option because I need to tilt my head forward in order to swallow saliva without choking. The two and a half hour journey was spent fighting the acceleration forces, trying to control tilting my head forward every 30 seconds to allow me to swallowing and then struggle to lift it back up again. I try to coordinate all this with accelerating and braking to assist with movements. Trying to lift my head up while braking and going down hill is impossible, as is trying lower my head while accelerating. Needless to say, I was shattered when I arrived and my neck felt like I had been trying to balance a sack of spuds on my head for two and a half hours. I can't think of a solution and I am not looking forward to the return journey.

The rest of yesterday was ok, the hoist we had rented had arrived and my carer, Rasa arrived shortly after us having driven down in tracy's car. The whole carer arrangements had been a nightmare. I had found out only 4 days ago that funding for a carer hadn't been approved, and without which no carer would be provided. Also even if was agreed they wouldn't provide her with a car. Many emails later and with less a day to spare, we got everything sorted.

Friday, 5 August 2011

A Brave Man

Yesterday I got a comment on my blog from another MND sufferer who found the blog through the Patients Like Me website. He is only 36 (3 years younger than me when I was diagnosed) and I hope like me, has a relatively slow progression. He said that he has just read my entire blog from the beginning (hence the title), which is very flattering because it now comprises 150 entries!

He also has a blog which I read yesterday and will continue to follow. His first entry was interesting as it describes his diagnosis experience which was remarkably similar to mine, and since I never included this previously in my blog, you might be interested in reading it.

I hope that he found reading the blog more helpful than depressing and scary and that despite the challenging path that lies ahead, readin my experiences will make it a little easier and less bleak. There is no escaping the awfulness of MND but with determination you can (most of the time) have a 'living with it' outlook as opposed to a 'dying from it' one.

Tuesday, 2 August 2011


July wasn't the most prolific blog writing month was it. I think several factors contributed including apathy, tiredness and some prolonged computer use including a 15 hour stint over 3 days removing a virus off the boys' computer. This involved controlling 3 computers, 2 of them remotely, endless website searches, running time consuming scans with many utilities, editing registeries and doing countless reboots. Immensely frustrating but satisfying to crack and avoiding a complete reload.

But mainly the lack of entries is the result of apathy and lack of inspiration; even this entry was only started to explain my absence due to this lack of enthusiasm, maybe by the end it will have

progressed to something more positive. This frame of mind has become more prevalent since the cruise. I spending hours just sitting in the garden or sitting in my bedroom looking at the garden. The few opportunities I get to go out I often decline because travelling in the car is so uncomfortable. I don't even bother going into the lounge to watch TV because of the effort required to drive the wheelchair there. Also, until recently my eyegaze computer had a tendency to freeze when using its remote control function, leaving me completely stranded. I think I have got that sorted but I still keep wheelchair maneuvering to a minimum.

It has been almost 30 degrees for the last couple of days and it is completely wiping me out. Anything above 24 or 25 degrees saps the remaining drop of strength, makes breathing harder and is generally very uncomfortable.

I have made the effort to get out a couple of times. I went to the boys' sports day last week. Luke and Daniel did the sack race and Jake did the sprint. So less than a minute of participation for a 2 hour round trip. I know I should say now that it was worth the effort but more and more I can't convince myself that it is. During the sports day outing the computer mount slipped, resulting in the Computer pointing down towards the ground. I knew exactly what had moved but had no way of explaining to Tracy. One of the disadvantages of having carers is that when they aren't there, other people don't know how to do things. Tracy did her best to readjust it but the locking handle became too loose and the weight of the computer made the whole mount collapse. Although we managed to get it to a position where I could use it, I knew it would need resetting completely. So I spent the next hour planning how to explain to the carer how to do it; not easy when you have to explain words like slide or tighten.

We did manage an evening out with the boys to Sandown horse racing and Scissor Sisters concert. We had done a similar evening with Razorlight last year and apart from the wheelchair platform being completely useless at 18 inches high, it was a good evening. This time having been assured that following my complaint, future platforms will be higher, I could actually see the gig. The weather forecast had predicted an occasional shower so I decided to go without my eyegaze; a daunting prospect having communication severed for 5 hours. It was a good decision though as it drizzled all evening and it would have been very stressful worrying about the computer all evening and trying to keep it covered! We failed to back any winners but the concert was good.

We are off to Dorset for a week soon and have got the usual worries. It is the same place as last year but things have obviously changed since then, they have changed since the cruise 6 weeks ago.

So I am not a recluse yet but I am finding it increasingly difficult to muster the enthusiasm and courage to leave the easy, albeit boring environment of the house.

Thursday, 21 July 2011

I am back

I haven't been in the mood for writing recently but a couple of people have given me a kick up the arse so here is an update for the last couple of weekends.

On the first weekend of July I went to Goodwood Festival of Speed with friends Adam and Adrian. I hadn't planned to go to any of the usual motorsport events this year but I ended up booking the Grand Prix in May and then I got a text from Adam saying that the company Adrian worked for were the sponsors of the drivers' enclosure and he had corporate tickets. Now obviously I had no interest in free beer but the possibility of getting better access to drivers and cars was sufficiently tempting to agree to go. I know it may sound strange to be so reluctant to have a day out but I have these factors to consider

Arrange morning carer for 7am and be up and ready in 90 minutes

Arrange evening carer to coincide with my return

Brief friends on care requirements for the day

Plan around no access to toilet for the day

Weather considerations; rain is potentially disasterous for computer, being in direct sun wipes me out and renders the eyegaze unusable

Any distance beyond 100 metres requires someone to drive the wheelchair

Being dependent on whoever is with me to wipe eyes, scratch itches, empty bags, reposition arms, lift me up if slide down in the seat etc etc.

The route to Goodwood goes right past Fernhurst TVR, where I bought my 3 TVRs from. I had recently discovered the spare wheel from the Griffith. It had been taken out of the boot to make room for my folding walking frame and it never got put back when I sold the car in 2008. So I thought I would drop in and say hello to the guys I had got to know quite well. Graham, who I bought my first TVR from back in 1996 was there. I remember keeping him at the showroom until almost 10pm while I dithered in choosing between a blue or silver V8S, having just had my first experience of roof-down TVR driving, around the Hampshire countryside on a glorious September evening. Needless to say, Graham didn't have a tough sales job to do. I always regretted selling it in 2000 when I couldn't resist buying the TVR Tuscan, and had ever since planned to track it down and buy it back. C'est la vie

We had a quick chat during which he mentioned they had a stand at the Goodwood Festival which Simon (who I bought the Tuscan from) was manning. I would like to make it clear that I am not some very sad individual who keeps in touch with every car salesman I have ever dealt with, but the guys at Fernhurst are a great bunch. With the wheel returned we continued to Goodwood.

The day was very enjoyable and the weather was good (apart from being too sunny). Unlike previous years we didn't make the mile or so trip through the dusty wooded section through the rally stage to the top paddock. Its a great spot to see the star drivers but the terrain was too much this year. I was struggling with wheelchair on the flat but Adam did a brilliant job of mastering the controls and stepped in for the longer trips. Unfortunately we weren't able to get any special access despite Adrian's best efforts, but it was a good day out.

The following weekend I went to the F1 Grand Prix at Silverstone with Stuart. A third ticket was shared between my friend Chris on Saturday and Stuart's wife on the Sunday. Travelling there and back two days in a row was exhausting but it was good to have managed it again. The weather could have been worse, the skies opened literally at the second the Red Arrows arrived and pissed down until they finished 20 minutes later. We hadn't booked early enough to get covered seating so were reliant on waterproofs and umbrellas to keep us and (more importantly) my computer dry. The race result was disappointing; Hamilton, having briefly been second after starting 10th, only managed fourth and Button was forced to retire after the pit crew forgot to put a wheelnut on!

So 2 busy weekends in a row! The prospect of doing them is increasingly daunting but thanks to Adam's and Stuart's patience and willingness to overcome any difficulties, I can continue to do them. Just need to drum up the determination to do the Goodwood Revival in September and make it 3 out of 3.

Friday, 24 June 2011

Drug Trial latest

Yesterday I was up at Kings Hospital signing up for the second stage of the drug trial during which I will be taking the 'real' drugs! I started the first stage in November 2009, but don't know if I was receiving the drugs or the placebo (and nobody will find out until the end of the trial). I asked whether any trends had been observed over the last 18 months, but they wouldn't comment. This is partly because they also don't know who had which pills, but even if they had noticed a specific group progressing differently they wouldn't be allowed to disclose the information. Furthermore, any differences might just be the result of normal variations. However, my interpretation of his facial expressions while declining to answer, suggested that there might have been some noticeable results.

I guess on balance that I hope I haven't been taking the 'real' drugs and that switching to them now will have a positive impact (I really don't expect anything to be honest), although I am not sure whether I want to have progression slowed or even halted at this stage! Saying that, I remember thinking the same a year ago and now I would happily accept returning and being held at that stage. The drug company claim the possibility of neurone restoration, but of course it needs to happen at a rate greater than that which the disease destroys them.

Since starting the trial my progression has obviously continued in terms of both my actual physical ability and the FRS score used to measure it. In November 2009 my score was 23 out of 48 and its now 13. The fact that it has actually been at 13 since last September is unfortunately more the weakness of the FRS System as opposed to an arrest in deterioration. The FRS comprises 12 questions divided equally into 4 categories; speech & swallowing, arms, legs and respiritory system. Each of the 3 questions in each category has 5 possible responses scored between 0 and 4. The problem is that in my case my score is almost entirely achieved by my breathing still being sufficiently good to score 8 out of 12. The remaining points are awarded for my legs being able to bear weight and that I don't dribble ALL the time (I am a social dribbler!). Everything else reached zero over a year ago.  The deterioration can continue without there being any further reduction in the score creating a false impression of stabilisation.  The question about writing ability hit zero (can't grip pen) over 2 years ago but they don't have -4 for not being able to push a featherweight joystick on a wheelchair. By the way if I was offered the ability to grip one thing again, it wouldn't be a pen!

So I am still not planning to book the water skiing lessons just yet, but as my taxi drove past a Mercedes SLK AMG (my final decent car) on the way back home, I did endulge myself in a rare moment of day dreaming and thought f@@@ it, next time I will get the SLS; that's a promise.


Tuesday, 21 June 2011

To elaborate a little....

Thanks for your comments on the previous post. I think I should elaborate a little on the situation.

The issue of me having sole charge of the boys has been raised by the counceller tracy has been seeing after discussing the separation anxiety one of the boys is suffering whenever Tracy goes out at the moment. I am not convinced that this is the cause of the problem but I have to put their welfare before my pride, and there isn't much point in seeking professional advice if you are going to ignore it. We have discussed it with the boys and while their viewpoint is important, one obviously has to take into account their alternative agenda but I do accept that being so physically disabled and unable to communicate easily, there might be a situation which I might struggle to deal with.

Also it was suggested that if something were to happen with them while I had sole charge, tracy could be exposed to social services sticking their nose in .

So I guess I will just have to live with it.


Sunday, 19 June 2011

"Father's" Day

This week I was told that it was no longer appropriate for the boys to be left alone with me because it placed to great a responsibility on them. Here isn't the place to voice my opinions on this viewpoint, but irrespective of whether the decision is correct, it has left me feeling redundant and resentful. It's going to make it difficult for Tracy to go out without coordinating it to when a carer is here or my mum being available to come over. This obviously is going to impact Tracy's ability to go out which isn't good for her and I don't want to be responsible for that. Throughout this illness I have aimed to minimise the impact of it on Tracy. I (with the help of carers) try to be self sufficient in terms of care and organising everything related to MND. I will be honest by saying that my determination to do this is largely driven by a trait I have always had,  which is hating being indebted to anybody. So until now I like to think that whilst Tracy is now effectively a single parent with the stresses that brings, I have minimised any additional work relating to my care. Being able to mind the boys when she goes out meant that she had one advantage over an actual single parent, but it will no longer be the case.

Being told effectively that I am no longer fit to look after my own sons is something I wasn't prepared for; that a carer, a virtual stranger is more suitable than me to care for them is difficult to comes to terms with. Like being PUT to bed at 9-30pm, it makes me feel like a criminal. Accepting the direct physical effects of MND is difficult enough but these consequential side effects which rob me of my freedom of choice or limits my participation beyond the limits imposed by the disease directly, are the hardest to bear.


Saturday, 18 June 2011

Life is Like a Tube of Toothpaste

I have been trying to perservere with the new indoor wheelchair. It has been sitting in my ensuite toilet since before the holiday. The chair arrived 6 weeks ago but I have had to arrange for various people to fit other bits to it before it was useable. Having returned from the holiday to discover the current indoor wheelchair was now extremely difficult to drive, the prospect of switching to the new one which I already knew had a harder joystick and required greater accuracy due to its larger size, isn't one I have been looking forward to. I was forced to use it the day we returned from holiday because my current one hadn't been on charge for two weeks. I only used the new one for a few hours while the other charged up.

So today I decided to give it a go. I managed to use it for a few hours including a two trips between bedroom and lounge, but the second return trip was almost impossible being completely unable to manage any left movement. So I have reverted back for the remainder of the day to the old wheelchair. I have already arranged for the wheelchair technician to visit to make some more adjustments to the controller positioning, but I think the issue is beyond the point where it will help.

Trying to extract the last tiniest amount of strength in my arm is like trying to get the last bit of toothpaste from the tube. Last year I was rolling up the tube, at the beginning of this year I had cut the tube open to scrape out the remaining residue and now I am using a single toothbrush bristle to get at the almost invisible amount within the thread of the screw cap. Unfortunately this analagy doesn't extend to the step of getting a new tube out of the cupboard!

Wednesday, 15 June 2011

Post Cruise Blues

So back to sitting in the garden and feeling rather low. Not primarily because the cruise is over but because some of the things which were getting difficult before the cruise are now impossible. There is an element of 'use it or lose it' with this. In any event you're going to lose it but refraining from something for a week or more will accelerate it.

In my indoor wheelchair I had been able, albeit with great difficulty, to pivot my right forearm upwards at the elbow, allowing me to use my strategically placed tissue to wipe my nose or scratch an itch on my face. I haven't been able to do this for some time on the outdoor wheelchair because of subtle differences in armrest positioning. So having been unable to do this action for 2 weeks, I have lost the ability permanently now I am back in the indoor chair. So when I have a coughing episode which causes my eyes to water (and subsequently sting like hell), saliva to run down my chin and chest and snot to stream from my nose, I have to wait for someone to clean me up and if I time it badly, it could be an hour or two.

Similarly the variation in joystick positioning meant that for 2 weeks the tiny amount of strength remaining in whichever muscle I used to turn left on the indoor wheelchair has gone completely. Finally I can no longer turn on my side in bed. Again, maybe this ability would have been lost over the next month or two but not being able to do it for 2 weeks has accelerated the process. Last night I woke feeling a little short of breath but was unable to turn on my side or even move enough to reach the bed control to raise the bed. I can't think of any solutions. I am also nervous about using the ventilation equipment alone in case I have a coughing episode.

I am running out of solutions to the problems, partly because solutions don't exist but also because I am running out of the will to find them; a situation which I find more difficult cope with than the actual problem.

Friday, 10 June 2011

The Cruise 2011 -to sum up

So our cruise is over and like last year I am sad to be going home. It has been a great two weeks. It probably hasn't had quite the same magic as last year. There wasn't that surprise factor for either us or the boys and they have not revelled in the environment quite as much as before. But is still a great format and undoubtedly the best holiday option for me. Returning home is going to be a stark contrast; my boundaries reduced from 360,000 square feet of readily accessible indoor and outside space to the confines of house and garden. Evenings no longer full of live entertainment, party atmosphere and late nights. Bed at 9.30pm from tomorrow.

Getting around the ship has become easier throughout the holiday. Although physically harder than last year, it has been possible unassisted most of the time. Movement around the ship has been generally limited to necessary trips to specific events rather than last year's driving around for something to do, but I can live with that. Communication with other passengers has been a mixed experience. I have found the teenagers to be the best at actually listening to my computer's voice. A lot of people will walk straight past me waiting for a lift without volunteering to push a call button, even when I have asked. I think most just don't register it as a voice. Some people who push a call button then leave before I get a chance to tell them what floor I want. It doesn't occur to them I am as incapable of pushing buttons inside the lift as I am outside it. Another irritating situation is waiting for a lift and when one arrives, a 4 or 5 overweight people filing past from behind me before I have a chance to get in. With 4 lifts in each section, any one might arrive first, so if its busy I wait to one side to avoid having to turn around if a lift behind me arrives but it invites people to ignore me. Saying all this, many guests are extremely helpful. I had a couple of amusing incidents today. This afternoon a young girl came up and said "My dad has seen you on the ship and he told me that if I see you, to ask you 'have you been on tv and are you a famous scientist' ". The sunshine prevented me using the computer so I had to decide whether to shake or nod my head. I went for the shake and she walked away looking rather disappointed! Later, in a busy shopping prominade an older lady stopped me and asked if I had had a nice time to which I nodded my head. She then said "so are you a war veteran or have you had a terrible accident"!

I know many people have been a little disappointed by the weather, but it has totally suited me. Not too hot or sunny. Most days have been warm enough and the afternoons have been fairly sunny. I have found some points difficult, particularly in the evening with everyone chatting, eating and drinking. Last year as well as being able to eat, I could manage some communication without the computer, allowing the occasional spontaneous comment. The complete dependence on the computer makes many comments redundant because the moment has passed. So, exploding fuel depots aside, it was a very good holiday.


Thursday, 9 June 2011

The Cruise 2011 Day 13

We have arrived at our final port of call, Vigo. This was the location of last year's puncture drama, so we decided not to tempt fate and stayed aboard. The boys spent the morning of what was probably going to be there last day in the pool. After lunch the afternoon was filled with Crazy Golf, climbing wall and the first attempt on the Flow Rider. Jake managed his 2nd complete ascent of the wall which scales 20 metres up the back of the ship's funnels. Daniel also managed his highest climb just short of the summit. Only Jake was tall enough for FlowRider, an artificial wave for surfing and belly boarding. After waiting 45 minutes in the cold wind as we left Vigo, we were rewarded by watching jake being swept to the top of the flowrider by the force of the water. Jake's light build simply couldn't put enough weight on the front of the board to keep him on the wave. Anyway he still enjoyed it. Tracy took the boys to Johnny Rocket's Diner for tea; I gave it a miss this time.

We all met again for the evening's show which was the final production by the ship's perfomers. The amusement arcade, the Rock Britannia street party (a final opportunity to attempt to be filmed by the roaming cameraman and get on the cruise DVD. Previous attempts are unlikely to make the final edit as they have invariably ended up as a squabble. We have higher hopes for tonight's performance by Jake doing his Townsend windmill air guitar), and our regular fix of Rock The Boat. Tonight's set including Led Zeppelin's Rock n Roll; the drummer providing a very impressive Robert Plant substitute. Almost 2am in bed!

Wednesday, 8 June 2011

The Cruise 2011 Day 12

Last night's game show was good fun, involving the audience being divided into teams with two captains each and being requested to produce various items as fast as possible or perform tasks. It was better if you were there!

So today was Lisbon, the last stop we had planned to go ashore. There was a shuttle bus to two locations, the first being the town centre followed by one at a monestary. The town was hard work and other than a couple of impressive statues was just shops and crumbling mosaic pavements on hilly streets. Other than the main pedestrianised section through the shops, it isn't wheelchair friendly. Cobbled streets with tramways, dropped kerbs that are still 3 inches high and obstructions on the narrow pavements don't make for a relaxing visit. But I can say I have been to Lisbon even if it was not enough to see it at its best.

The second stop was much better. The monestary and surrounding gardens, fountains and monuments were fairly accessible and the whole area was much more tranquil. The monestary itself had a beautiful outdoor quadrant within the incredible stone carved walls. The boys hadn't been terribly interested so far but enjoyed going to the top of the final point of interest; a 50 metre high sculpture overlooking the bay dominated by the impressive suspension bridge.

We returned to the ship and went up to watch our departure, worth seeing to witness the couple of feet clearance as we passed underneath out of the port. The evening's show was a group called Graffiti Classics, three violinists and a double bassist who did a humerous take on well known pieces. At most shows there are always a number of people who leave during the final 5 minutes, presumably to avoid the queues at there dinner seating but it is bloody rude. So when the double bassist, (who had been comically scathing of audience participation during the show) ran up the isle to physically drag people back to their seats, it resulted in a huge cheer from everyone. We finished the evening watching the band who were doing live karaoke.

Tuesday, 7 June 2011

The Cruise 2011 Day 11

Today we are at sea on the way to our penultimate stop at Lisbon. The day got off to a bad start when I was told that my wheelchair charger had been off all night because one of the boys had kicked the power cord out on the way to bed! The trip into alicante combined with a long day running the computer had drained the batteries yesterday so it was going to need the full 9 hours to recharge. I reckoned a 5 hour charge would suffice to keep it going until midnight and its now 9pm and its looking good! Everyone thinks I am paranoid about checking power cords on chargers but it's such a pain when this happens. I finally left the room at 2pm, in time for the belly flop competition at the pool; daft but very amusing!

Tracy managed a bit of yoga in the cabin while I (as you can see) got my blog up to date for the first time since Gibraltar. We met up at the ice rink for the second ice show. As usual, a good wheelchair space required me to be there an hour before show time!

After we met for a drink with my old work colleague, Mark and his girlfriend. The boys already knew that they had a junior suite with a balcony so they weren't going to get away without letting the boys see how the other half live. I hope they had the sense to blindfold them en route otherwise the last 3 days of there cruise won't be very peaceful.

We are now sitting in the Viking lounge with panoramic views out to sea. In half an hour we are returning to the ice rink for a event called The Quest, based on a TV show of the same name. I will report back tomorrow!

Monday, 6 June 2011

The Cruise 2011 Day 10

Alicante today. The weather has been the warmest so far but we still ventured into town for an hour or so. The previous days' driving had taken its toll on my arm and I struggled from the start and after 20 minutes opted for sitting in the shade, but from what we saw it was a very attractive town. We returned around one and went to the afternoon screening of The Last Three Days, a fairly decent film with Russell Crowe. It finished in time for us to get to Deck 12 to watch our departure, accompanied by the deafening three blasts of the ships horn. Today's was performed by guests who had won a charity auction at night's show. I had been tempted to bid for the boys to do it but as the bidding exceeded a hundred dollars I had second thoughts. It finished at over three hundred dollars!

We braved the comedy act in the evening. It seemed to go down well with the audience but we couldn't get into it. We have been disappointed by the shows. They have consisted almost entirely of single performance acts, designed to appeal to the older audience. Last year there were more big productions and the single performances had broader appeal, like the Elton John tribute act. Maybe they are saving the best for the final couple of days.

Tracy was feeling a bit wiped out, so I took myself to the 80s night where Rock The Boat played until almost 1am. They are the best entertainment on the ship, a covers band that play as well as the bands they cover.

Sunday, 5 June 2011

The Cruise 2011 Day 9

Our second day in Palma, we took the shuttle bus into town. They have good wheelchair access on the buses although the elevating ramp with no side rails or raised edges was a little scary 8 feet in the air. We spent a couple of hours walking round the streets and visiting the cathedral, I managed most of the wheelchair driving myself but got driven for the last bit. The boys weren't very interested in walking around having been dragged away from the Cartoon Network Channel. The afternoon was spent back at the ship where the boys played crazy golf, tabletennis and went swimming. The evening show was OK; a singer catering for the older guests. He had a pretty good voice and sounded a bit like Neil Diamond, he should have just done his songs instead of some of the obscure covers.

Saturday, 4 June 2011

The Cruise 2011 Day 8

Today we arrived in Palma, Majorca for a 2 day stop. We chose to have a relaxed day on the ship and go into Palma tomorrow. The weather is overcast and we can see a thunderstorm over the mountains. So playing various games with the boys seemed a good plan. They were screening The Social Network at the cinema so while the weather was not conducive for sunbathing we went to watch it. Our comments on last year's feedback form had been completely ignored as they still had a crappy projector. For a ship that cost almost one billion dollars, they could have spent a grand on a decent one. We suspected some of the more senior members of the audience hadn't read the summary in the film guide or maybe we were being prejudiced and that Mabel and Cyril were avid Facebook users who wanted to find out about the man that had brought them together. Twenty minutes in, I had to move a second time for each of them to pass me as they left; a little irritating as most of them had arrived only ten minutes earlier, forcing me to move after the film had started. I was tempted to type out 'they sell watches on deck 5' but I would have missed even more of what was an excellent film.

In the evening, the band from yesterday played at the pool party which kept us entertained until after midnight, although it turned out that Rock The Boat did have a wedding reception setlist.

By the way, for the grammatical perfectionists reading this (I know one person who probably whinces throughout) I am well aware of the mixed tenses within my blogs but they are often started in the present and completed later. My preferred text editor doesn't have a spell checker and I can't be arsed to copy everything into Word before publishing. And at 65 cents per minute for an internet connection, only the most embarassing mistakes get corrected online.

The Cruise 2011 Day 7

Barcelona today. Tracy had indepenently arranged a private tour with a company providing wheelchair accessible taxis. We had agreed to meet them at the ship at 1pm. We had been informed last night that the ship would dock at a different pier from usual (maybe there were oil storage tanks on the usual one). We emailed the company to notify them hoping they weren't insulted by the inferrence that they wouldn't spot a quarter million tonnes of ship was a few hundred yards out of position.

Our taxi was waiting when we got off the ship, it was exactly the same car as ours so it was a promising start but our hearts sank when it was discovered that a minor collision the day before had caused the rear bumper to buckle up, preventing the tailgate opening. While tracy went back to the cabin to get the Barcelona tour guide in preparation for a DIY tour on the bus, three officers from the port authority armed with a hammer managed to reshape the bumper and got the tailgate open.

Our driver and guide, Jordi took us for a 4 hour trip around Barcelona. We started at the Olympic stadium and National Gallery where we had a great view over the city. We then went across town to Temple de la Sagrada familia, a stunning building inside and out. We stopped quickly at Park Guell before returning to the ship via Las Ramblas, a 2km long stretch of pedestrian area which is like a combination of London's Southbank and Covent Garden with markets and street perfomers.

I managed to operate the wheelchair myself throughout including the precariously steep ramp into the car, but I was pretty knackered when we got back.

While Tracy took the boys ice skating and for something to eat, I relaxed in the late afternoon sun on the top deck with views across Barcelona. There was also plenty of activity to watch in the port as other cruise ships arrived or left. Daniel takes great satisfaction from comparing the size of other cruise ships with ours as invariably ours wins by a significant margin every time!

We went to the evening show which was the first of the three big productions. Again we had seen it last year but it was still excellent. After we went out to watch the ship leave port. As we were walking around the section of deck that overhangs the ship, daniel said he didn't like this bit because it might 'snap off' which amused us no end. Having recovered from the excursion, we decided to check out the band in the lounge bar. They were just finishing a line dancing session but said they were returning shortly to play hits from the 50s to 80s. With the audience of predominantly over 70 we expected a typical wedding style playlist, so were pleasantly surprised to have some Thin Lizzy, Rolling Stones and Queen covers. They played until almost 1am, finishing with Another Brick in the Wall! Most of the older audience had already left by then.

So a good day; probably the best so far. I have got around the ship indepenently, including lifts for the first time and even tried lift lottery for the first time - see last year's entry.


Friday, 3 June 2011

The Cruise 2011 Day 6

We arrived in Cannes this morning and the weather is wet and windy. This stop required a tender to ferry passengers the last half mile to shore and although they are wheelchair accessible, it was fairly obvious the gangway wasn't going to be wide enough for my chair, so before navigating the zig zag platform I returned to to the ship leaving Tracy and boys to go ashore. It may have been a blessing in disguise as within 5 minutes of them landing, the skies opened forcing them to take shelter in a nearby Mcdonalds. My computer wouldn't have appreciated a soaking. It was a little disappointing not to get off the ship again but damaging the computer would be disasterous. I spent the morning on deck 11 where I bumped into an ex co-director from work, so we had a couple of hours catching up.

Tracy and the boys returned in the after by which time the sun was out and it was very pleasant sitting in the sun on the top deck with a view of the Cannes' coastline. The ship set sail at 5pm and as the breeze stiffened we moved to a more sheltered deck. The boys had enjoyed their trip and had seen the Film Festival venue and spent time on the beach.

We went to the early show which was a comedy variety act, which was a bit naff but quite amusing nontheless.

The Cruise 2011 Day 5

Today has been spent at sea travelling to Cannes. This is the last sea day for a while, the next hops are done overnight. The weather hasn't been great today although it brightened up this afternoon. A lazy day for everyone. Found another quiet spot on the outside of deck 4 and Daniel joined in a game of deck coites with another family giving Tracy a few minutes peace to read her book. This evening's show was the Jane Mcdonald spot; not really our cup of tea but last year's equivalent was actually very good. By the end of the show (which wasn't great) we were in quite rough seas so plans to go up to the higher decks were abandoned in favour of the cabin. The ship information channel on Tv was reporting winds of 70MPH and waves were reaching our cabin window. Lying down was the best bet so we went to bed.

Wednesday, 1 June 2011

The Cruise 2011 Day 4

We arrived at Gibraltar around 9 this morning. Tracy took the boys ashore and walked into the town to get the cable car to the top of the rock. The 20 minute walk through busy streets would have been too difficult for me and I wouldn't have been able to get on the cable car anyway, so I stayed on the ship. The boys returned around 3 and decamped to the pool. They had enjoyed their trip and had encountered the famous Gibraltar apes. They'd had no problem sniffing out the Fruit Loops in Jake's bag and had promptly nicked them.

Our departure from Gibraltar was rather more speedy than planned after the oil depot a few yards from the ship exploded. I had been sitting on deck 12 with Tracy and Daniel when we heard a loud roar

like a jet engine. As we looked overboard, the roof section was being hurled into the air on top of a ball of flames. I couldn't actually see what it was but another passenger was saying the adjacent tanks might also go. It was a bit surreal, I have to admit it was quite worrying because it was within just a few yards of the ship and we didn't know if the ship had been damaged or covered in burning fuel. Also Jake and Luke weren't with us. After various instructions from the ship's bridge directing passengers to get inside, the ship set sail (within an apparently impressive 4 minutes of the incident )

Tracy had already gone to round up the boys and 10 minutes later we were all back on Deck 12 watching Gibraltar under a plume of smoke as we sailed away.

In the evening we went to see hypnotist show where 10 of the passengers were humiliated for our entertainment!

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.