Say It Loud

I am fully recovered from my visit to planet Noro I am pleased to say. Thank you for all the messages of sympathy and I'm sorry if you have suffered similarly.

Yesterday Nina, the speech and communication specialist, came for another visit. During our conversation last week I had mentioned that I often have difficulty making myself heard in noisy environments because I am unable to project my voice loudly enough. Nina was excited because she had a solution to this problem and this week she had brought with her a plastic case containing a voice amplifier. The device was about the size of an old fashioned Sony Walkman and came with a transdermal (throat) microphone. The EchoVoice has a built in speaker, an on/off switch and a volume control and that's pretty much it. The idea is that you can speak at a low volume and the device amplifies the voice through the speaker. Simple.

Unfortunately not only is the device the size of a Sony Walkman it also looks like it was designed by Amstrad and built in the 1980s being made primarily of beige plastic and with a speaker that wouldn't have been out of place in a transistor radio. As soon as I turned the volume up to a useful level my voice distorted as if it were being fed through a guitar fuzz box. It would be perfect if I wanted to announce the 2.37 from Paddington and not want anyone to understand but not so good for a chat in the school playground. Nina, who had tested the EchoVoice in her office, was disappointed by the reality in the field. I sounded like a rather breathy Dalek. Unfortunately not a very loud one.

Nina left to see if she would have more luck finding something to speed up my typing. I'll let you know how we get on.

Until next time...

Padlocked

So there I was, bossing the children around. “Clear the table, Matty, it's tea time.” “Sam, put that toy away.” Polly was attaching the Neater-Eater arm. The chilli was ready. Strictly Come X-Factor was on the telly. I went to move backwards so we could move the table ready for tea. My wheelchair wouldn't move. I tried again. Nothing.

It is a law of the universe that electric wheelchairs only break down at the weekend. Stephen Hawking, in his seminal work, A Brief History of Wheelchair Related Inconvenience postulates that the relative complexity of a wheelchair multiplied by the disabled persons dependency on the chair divided by the distance a service engineer will need to travel and factored by the time any office of any person able to facilitate a repair closes will mean that a wheelchair will breakdown after 5:30pm on a Friday and before 8:30am on a Monday. The Hawking equation therefore determined that my chair broke down at 7:00pm on a Saturday.

I pressed any number of combinations of buttons to no avail. The LCD screen on the controller had a picture of a padlock on it which summed up the situation very well. Eventually we called SERCO and explained how stuck I was. We declined the offer of an appointment on Tuesday (between the hours of 8:30am and 6:00pm) and reiterated that I was very stuck. My chair, when working is a marvel of technology – when not working it is a very very heavy armchair with a substantial human male in-situ. There are rockeries with more mobility.

The problem with engineers from SERCO who, on the whole are nice, competent people, is that they do not have specialist knowledge of every model of wheelchair. It is not realistic for them to know the ins and outs of every make and my chair is very high spec and therefore relatively uncommon. As a result Polly and I did not hold out much hope when we were told that the duty emergency engineer was on his way. Still, at least there would be an extra person around to help push.

Meanwhile we ate tea and watched Stacey be voted out of the X-Factor final. We also started ploughing through the vast amount of paperwork that came with the chair. I dimly remembered reading a manual that appertained to my particular controller. Several manuals had pictures of controllers that bore no relation to the one I have, with its smug picture of a padlock displayed on the screen, but eventually, in a folder filed under U for Unlikely to be needed, we found a booklet with some details that roughly corresponded to mine.

To unlock the padlock, which we were informed was a necessary security feature, we had to move the joystick in a particular sequence of movements. No one was more surprised than me when this worked and my chair was restored to full working order. We immediately phoned SERCO to cancel the engineer. Unfortunately he was already committed and wasn't going to return to the depot without a signature on his paperwork. He duly arrived and sucked air through his teeth whilst examining the controller in a manner meant to reassure us he had seen this model before. According to him, the padlock security feature is to enable the wheelchair user the ability to lock the chair whilst they pop into a pub or an inaccessible shop. This makes perfect sense. Anyone who needs a multi-thousand pound high specification wheelchair often wants to get out of it to wander around shops or to get some liquid refreshment. He also informed us that the padlock could be activated by nearby magnets or electrical devices like mobile phones. Perhaps you can begin to see why I don't have complete faith in the abilities of SERCO engineers.

To be fair, the engineer was very gracious about being called out on a wasted mission. We signed his paperwork and promised to keep the electric wheelchair away from anything electrical. I also assured him I'd use the padlock security feature whenever I got out of the chair to go shopping. Now, if only I can work out why the bloody thing activated in the first place.

Until next time...

Me Versus The Blackberry Storm 2

I am one of those fortunate people who knows instantly what to do when faced with a computer or technology based problem. I call my friend PJ and beg him to sort it out. However, occasionally I am the person called upon to impart wisdom on matters technological. I swear that I have never pretended knowledge of anything more complex, computer-wise, than an abacus but sometimes people mistake my intense concentration when I am writing for computer literacy. My mother, who has one son with a doctorate in computer science who runs a highly successful software company, still prefers to ask me to solve her internet connection problems. My advice usually goes as follows: “Turn everything off, mum. Wait five minutes and then turn everything back on again.”

Kolapo, one of my home-care providers, wanted to buy a new phone that has internet facilities so he can send and receive emails to and from his fiancée in Nigeria. Now Kolapo has never owned a computer and certainly doesn't have a home broad band connection. He wanted a phone that would double as a PC and open up to him the World Wide Web. Someone, somewhere, had recommended he purchase the new Blackberry Storm 2 on contract from Vodafone. Now I won't go into the whole sorry saga of how difficult it was for him to get such a hi-tech phone delivered to his shared home accommodation. I won't mention the dubious signature that claimed to have accepted delivery of the said hi-tech phone and how the same phone turned up at a local post-office once Kolapo, aided by Polly, vigorously denied receiving it. Suffice to say, Kolapo eventually came in to possession of a Blackberry Storm 2 smartphone, tied to a 24 month contract. And that's where my troubles began.

Kolapo is a great guy and is a kind and considerate carer. He works 7 days a week and is there to get me up in the morning and returns to help me get back into bed last thing at night. Often he pops in during the day to help me go to the loo or to make me a coffee. He speaks multiple languages fluently but has a fairly strong African accent which can make phoning helplines a tedious or confusing experience. To get around this he seeks my advice of on all things technological.

The Blackberry Storm 2 is an amazing bit of kit but it is anything but simple to operate. It is about as intuitive as the off-side rule. I have friends with the Apple iPhone and compared to the Blackberry Storm 2 the iPhone is but a child's toy. For someone like Kolapo who has never owned a computer and who only has the vaguest understanding of the internet the phone is virtually unfathomable. To add to the problem the Blackberry is touch screen and Kolapo is a former basketball player who has enormous hands. Every time he needs to type in a multi-syllabic Nigerian dialect password it takes several attempts. He also insists on reading the terms and conditions of every site he enters. It has been a very long week.

Kolapo has also been surprised to discover that just because you have access to the www does not mean everything on it is free. He was disappointed to find his phone did not come complete with 1.6 million songs. I took pity on him and downloaded some music from my own library. He is still looking for songs by someone called R Kelly but has had to make do with Johnny Cash.

The Blackberry Storm 2 might be the perfect accessory for a businessman like my friend Darren, the fridge magnate (who, incidentally recently bought an iPhone), but for a computer novice it is a bit over the top. Especially if your only source of advice is me. I mean, can you explain the difference between the world wide web and the internet? It took me a while to understand what he meant when he wanted to know what wee-fee was for. So far I'm not sure he's made any actual phone calls on it. He uses his old hand set for those.

I wish I'd caught him before he decided on the Blackberry. I would have directed him towards the iPhone. At least he could have played Doom on it. Oh well, only 23 and a half months to go.

Until next time.

Wheelchair Woe

A man came to collect my ten day-old, whiz-bang, high-tech, rinky-dink, brand new, multi-thousand pound wheelchair yesterday. Apparently it's broken. It may be a programming problem or it might be a stuck micro-switch. Either way I'm not sat in it now, which is a pity because I really like it. Hopefully it will be returned to me tomorrow in fully functioning order.

I'll let you know what happens.

The Blue Box

I am feeling so much better that I am beginning to wonder what all all the fuss was about. My temperature is down to normal and the infection seems to have gone. There is some residual gunk and coughing but it is as nothing compared to last week. It will take another week or so before I'm back to what passes as normal for me but I can live with that.

I would certainly have ended up on a respiratory ward at St Helier or the Brompton Hospital had it not been for one particular piece of kit. At times of crisis our home can resemble a reasonably equipped emergency facility what a BiPap ventilator, a nebuliser, ceiling hoists, profiling bed, air mattress, Oxygen, a drugs cabinet with a significant street value, and a blue box the size of a large bread-bin, known in our home as 'the cough machine', but more technically, by my consultant at least, as a Cough Assist Mechanical Insufflator-Exsufflator.

The Cough Assist Mechanical Insufflator-Exsufflator is a genuinely life saving bit of tech. Without it I would either be dead or on permanent ventilation. The machine works by clearing secretions by gradually applying a positive pressure to the airways and then rapidly switching to negative pressure. Apparently the rapid shift in pressure produces a high expiratory flow, simulating a natural cough. The reality is more akin to having someone Dyson your lungs on full power. The effect is unsettling and uncomfortable but infinitely preferable to hours of ineffectual hacking coughs that simply exhaust you, or, sessions of chest pounding physiotherapy that induce near psychopathic hatred of the person pummelling you.

Way back in 2000 I was very ill with Pneumonia resulting as a complication from Pancreatitis. I was in intensive care and high dependency wards for months and for most of the time had a tracheotomy. A tracheotomy, for those unfamiliar with the procedure, is where someone, preferably a doctor, makes a hole in your neck and feeds a tube into your lungs for air to be drawn through, or, as in my case, for someone to stick a suction tube in and vacuum your lungs for gunk. Having a nervous F2 wielding a scalpel at your throat while you are passing out from lack of Oxygen rates pretty low on my list of things to do again. The advantage of the cough machine is that it is totally non-invasive. It removes secretions without the need for someone sticking a plastic straw through an unnatural orifice in your neck. I'm not sure how much such machines cost but they must be cheaper than spending days, weeks or months in hospital.

Even today, when I am feeling so much better, I have already used the blue machine twice. Once again I am grateful to be living in a country with a national health service that provides such equipment free at the point of need.

In the light of all above, it might seem churlish to moan about another freely provided piece of absolutely necessary kit, but this morning, just at a critical juncture in the preparation for a shower, my new multi-thousand pound, state-of-the-art, rinky-dink wheelchair stopped working. The control panel LCD screen simply states there is a system error and the thing refuses to budge. Fortunately, the ever unreliable Serco, have failed to collect my old wheelchair and so I am back in that until an engineer with a degree in computer science can get here tomorrow. I have had the new chair ten days, most of those I've been too ill to do anything other than sit, so I doubt the problem is overuse. Mind you, I wouldn't put it past Matty to have reprogrammed it to play Marvel Ultimate Alliance 2.

Until next time.

Faster Than A Speeding Snail

Yesterday I had a fitting for my new wheelchair. Yes, it's the kind of wheelchair that needs fitting. Mind you, it also the kind of wheelchair that requires an engineer and a physiotherapist to explain how it works. It has so many configurations I began to think piloting a Harrier Jump-Jet would be simpler. The controller has more modes and computing power than Deep Thought.

The chair is amazing. Thanks to a grant from the Joseph Patrick Trust I have been able to have a seat-riser fitted which allows me to rise up to my standing height. The seat tilts as my current seat does, but in addition the back-rest moves independently. Each of the foot-plates can be adjusted at the press of a button. As I played with the controller I found that I could configure the seat so that for the first time in years I actually felt comfortable. The expression of relief on my face made Polly feel quite emotional. Little details like calf supports and silicon gel covered armrests add to the degree of comfort. Even the head-rest is infinitely adjustable.

Of course, this being me, not everything was perfect. The chair is significantly higher than the present one which means we need to raise our dining table using blocks. And because the motorized foot-plates are more complicated to take off the carers are going to find transfers more difficult. The chair is a little longer as well which means taking certain corners around the flat will be more challenging. I'm sure these things will lead to a deal of frustration and no doubt those frustrations will be reported on these pages but at the moment I am almost beside myself with excitement.

The wheelchair has gone away for fine tuning and adjustments, not least to reprogram the controller so that the chair goes at more than the 0.5 miles an hour it would only go yesterday. This was particularly embarrassing when I wanted to nip out to the car and check that the chair would fit in it. It took nearly 15 minutes to get round the corner while the engineer frantically phoned the office for instructions on how to access the power menu. I am assured it was only a programming glitch and can be easily fixed. I hope so or all I will be taking delivery of next week will be a very comfy armchair, albeit one that moves faster than a speeding snail.

I will keep you informed.

The Sony Reader

I feel it is time for a moan. It's only tangentially related to disability but, what the heck, it's my blog. I have a love. No, not the small, bobbed haired light of my life, but those things with long strings of words and a narrative, books. I have always loved books, ever since John and Janet watched Spot run and helped me to associate the little squiggles on the page with words in my head. My grandparents had lots of books and so did my parents. I have thousands, even though in the last year or so I have had to give away many hundreds for want of space. I am not unduly precious about books. I do not insist that a paperback's spine remains pristine and I will not do you actual physical injury if you turn down the corner of a page, though I may whimper. Books are, after all, meant to be read.

I don't go anywhere without a book. Polly will tell you that I had a book tucked down the side of my wheelchair when we got married, just in case there was a lull in the proceedings. Once, when I was in an Intensive Care Unit and in an induced coma, the hospital rang Polly in the middle of the night, anxious because I would not settle. She arrived to find my left arm fidgeting and grasping and at risk of pulling out the various cannulae that were keeping me alive. “He wants his book,“ she told the bemused nurses and placed a paperback in my hand, whereupon I apparently relaxed and didn't come to for four days. You take my point? Books are important to me.

I tell you all this, not to impress you with my literacy, because I generally read popular fiction not high-brow Whitbread prize winning literature and it's been a while since I read anything that might be deemed a classic. (Scroll down on the right to see a list.) No, I tell you this because I want you to understand how upsetting and stressful certain changes in my condition have become when I find myself unable to manipulate and hold up some books. Not all books, thank God, but hardback books and paperbacks over a certain size. During the day it is not quite so bad because I can rest the book on a table and using various bits and pieces as weights can hold the pages open. It's a bit tedious when I want to turn the page but it works. At night, however, reading in bed is another matter. Constraints caused by BiPap masks and necessary sleeping positions mean that holding a book, virtually any book, is hard work. Holding CJ Sansom's 500 page Revelation or Ken Follett's 900 page epic The Pillars Of The Earth is nigh on impossible.

But then, Oh Happy Day! Sony came to my rescue. Late last year the Sony Reader came to our shores. An electronic device that can store in excess of 120 books (and you can buy a memory card that raises this to several thousand) displayed on a non-flicker screen using Sony's patented e-ink. Gadget heaven. To turn a page you just press a button. You can even change the font size. Sony have done a deal with Waterstones (and now, apparently, WH Smiths) to publish books in the appropriate Adobe Digital Editions format which you can download from their web-site.

As with the early days of online digital music, not all books are available in the format yet, but a fair number are. I still have to buy paperback editions of some of my favourite authors such as Christopher Brookmyre, Bernard Knight and Susanna Gregory, but presumably, given time, someone will notice these grievous lapses and deal with such shortcomings in the available library.

So, how much do you think these e-books, where available, cost? Remember there are no warehouse storage costs, no shop with shelf space to rent, no paper or ink to buy, no presses to run, no postage for delivery, and no shop workers to pay. You do still have royalties, web-space and web-design to pay for and a legitimate profit to make. Should an e-book cost the same or less than a paperback? A hard back? Bear in mind that you probably want people to buy material in the new format so you presumably want it to be competitively priced.

Well let's see, shall we? The new Simon Scarrow novel The Gladiator has just been published in hardback. I can buy it from Amazon.co.uk for £8.09, for £10.79 from WH Smith, and for £12.99 from Waterstones. In Adobe Digital Format for the Sony e-reader? It costs £14. 09! That's six pounds more than a hardback version from Amazon (including free delivery with Amazon prime).

There! I told you I was going to moan. I can't help thinking that Sony and Waterstones are doing themselves no favours. I for one can't wait for Amazon's Kindle e-reader to arrive in the UK. Then, at last, we'll have competition to drive prices down.

I wouldn't enjoy life so much without my e-reader but I do feel I'm being taken advantage of. Now, I had better pay some attention to the other love of my life.

Until next time. .

Bionics And Gaffer Tape

"Steve Deal, writer. A man barely alive. Gentlemen, we can rebuild him. We have the technology. We have the capability to build the world's first bionic man. Steve Deal will be that man. Better than he was before. Better, stronger, faster... so long as Polly has enough gaffer tape."

Last Monday came the culmination of months of phone calls, meetings and letter writing when the man from Neater Eater came to fit my Neater Arm. The device fits to and is powered by the electric wheelchair and provides an exo-skeletal arm support that moves up and down. For the first time in months I can feed myself again.

The arm cost £3000 and has been entirely funded by my local authority, though thank you to everyone who offered to contribute towards it. The local health authority has little pots of money set aside for such devices and if no one claims them they get absorbed for other purposes. It would have been easier and quicker to pay for it myself but it became a point of principle.

So, after months of waiting, hours of fitting and calibrating, and £3000 later I have an arm that goes up and down. Mind you, it wouldn't even do that if Polly hadn't been on hand. The problem was that the arm kept getting snagged on the wheelchair backrest. We'd already had it altered but it still kept getting stuck. Step forward Polly with a paintbrush and a roll of gaffer (or duct) tape. She cunningly attached the paintbrush, using the tape, to guide the arm around the problem. Eventually the paintbrush snapped but Polly was ready with a length of broomstick. Is it any wonder I married her.

The arm is brilliant, but as with all things connected to my disability it is a compromise. It limits my arms movement backwards and forwards somewhat and because of the sling that supports my forearm it makes writing even harder than it already is. Inevitably it will affect the number of blog posts I can write for the foreseeable future until I can devise yet another strategy to speed things up.

In the meantime, we took the boys to see the new Star Trek film which is absolutely fantastic, certainly the best film I've seen in a long while. It was hugely enjoyable and now both boys are running around yelling “Phasers on stun!” and doing impersonations of Simon Pegg doing an impersonation of James Doohan doing an impersonation of a Scotsman shouting “she's breaking up, Captain, I no ken hold her.” As a bona fide Trekkie it makes my heart sing with joy and dilithium crystals.

And for once I can raise a glass to you all, literally as well as figuratively. Live long and prosper.

I, Robot

I've just had a very interesting experience. A little while ago I was very disparaging about a device called the Neater Eater, a mechanism that spoon feeds disabled people food at the table. (I think I said I'd rather starve than use it.) However further investigation of the company's other products revealed a more promising prospect, the Neater Arm.

A motor drives an exo-skeletal arm which in turn supports a muscle weakened arm like mine. The idea of the device is that it is fixed to an electric wheelchair and thus powered by its battery. This afternoon a rep bought a demonstra4ion model for me to try. This one was free standing rather than attached to my chair but it gave me an idea of what it might enable me to do. For a start I could lift a mug from the table and raise a fork to my mouth, something I have been unable to do for a while.

I have attempted to attach a video of the trial to this post. It is about 90 seconds long, with no sound, but it is also at the limit of my technological know how, so apologies if it doesn't work. I made it so the OT would understand what I was talking about and why I want to raise £2,934 ($4,380) to pay for it. That's a lot of money, but when the alternative is to have someone spoon feed you, I think it's worth the effort.

My plan is to upgrade the motor so I can lift boulders or small cars to throw at baddies. Wheelchair Man will live at last! (Don't tell the OT, superhero funding comes out of another departmental budget.)

Polly Come Quick - It Broke

Cast your mind back all the way to new years eve. As the country prepared to party and light overly loud fireworks Polly and I, exhausted from and at the whim of a week of temporary carers, prepared for a reasonably early night. Carlotta and Abby arrived and got in each others way but somehow got me ready for bed. But then the familiar cry went out, “Polly, Polly, quick. Come!”

The electrically operated bed was stuck at a peculiar angle The head end was raised some 4 feet in the air while the foot end was only at about 18 inches. “It's stuck Polly. Broken,” wailed Carlotta dramatically. And stuck it was. The foot end would go up and down as normal but the head end would only go up. By the time we had established this and levelled the bed up the mattress was nearly 5 feet in the air. It looked like one of those beds kids have so they can fit a desk in underneath for homework. But instead of a desk was a vast array of cables, chargers, multi-plug sockets and numerous suitcases.

Polly jiggled wires and connections in the hope we could lower the bed to a sensible height but to no avail. “It looks like your mum has got her wish,” I muttered. Years ago Pam had suggested Polly and I get bunk beds to save space in our then small bedroom. “It looks like we've had a row,” observed Polly, viewing the huge gap between her half of the bed and mine. “What a great way to start the new year.”

The most immediate problem was how the heck I was going to get into the thing. The hoist can only raise me so high. While Abby and Carlotta stood back out the way Polly and I considered our options. I could sleep in the wheelchair or maybe dangling in the sling like a baby in a bouncer. Neither option appealed. We settled for lowering the foot end as far as it would go and sliding me on to the bed which was now tilted like a ski jump and then raising the foot end as quickly as possible before I slid down the bed and off the end like a Paralympic Eddie the eagle.

Later, after the carers had gone, and I lay with my head close to the ceiling, Polly returned to the bedroom to continue fiddling for loose wires. Suddenly the bed descended to a more normal height and we were able to celebrate the new year together rather than on separate levels.

One day a repair man will arrive, suck air through his teeth, and declare we have an intermittent fault. I expect to spend much of 2009 sleeping 'nearer my God to thee.'

A Door In The Life

The two men stood in our living room and sucked air in through their teeth. One of them took out a tape measure and checked again. He shook his head and turned to me.

“Do you mind if I measure your chair?” he asked. One of the men was from a company that had tendered to replace our back door, the other was the council surveyor. “You are going to lose about 3 or 4cm because of the new door jamb. Is that a problem?” “Yes,” I replied firmly. “It is.”

Welcome to the long running saga of our back door. We live in a ground floor flat (apartment) with a small back garden (yard). Our back door opens onto a ridiculously long ramp that allows access to the garden or the back gate. Both the door and the gate are electronically operated by a remote controlled entry system which was initially installed when we first moved in some 9 years ago. The back door worked beautifully for a few months and then broke. People came out and sucked air through their teeth and determined it had broken because the wood of which the back door is made had swelled in the wet winter weather. This had caused the electric door opening motor to burn out as it tried unsuccessfully to open the stuck door. The motor was repaired. The motor burned out again.

For a long time nothing happened. The motor remained burned out. We were left with a back door that was harder to open than an ordinary one because it had a heavy door opening mechanism uselessly attached to it like a particularly uninspiring piece of installation art. Eventually we disconnected the mechanism and used the back door like any normal mortal would. This effectively meant that I could only use the door if someone opened it for me. Fortunately I had children.

Years went by. The original installer of the door opening mechanism went out of business. We had another door opener... er, child. Periodically some one would come out to suck more air through teeth and explain why their door opening mechanism wouldn't be suitable for opening our door. Then one day I realised something awful. Soon the 2nd baby door opener would be going to school full-time and not be available for egress facilitation. We redoubled our efforts and made a fuss until the man from the council found a company to install a non-biological door opener. For a while everything was fine. The door would open at the push of a button on a tiny remote control and I could come and go freely throughout the summer. But...

The wooden back door continued to swell in wet weather. The new, improved, non-humanoid door opening mechanism is beginning to feel the strain. The door is beginning to stick. The solution? A new door. Hence the presence of the two men in the living room this morning. The problem? The new door will be 3 to 4cm narrower than the old one because the door jamb will be larger.

3 to 4cm may not seem a lot but you can't make a wheelchair 'breathe in'. The man from the council has gone away to think. I'll let you know when he's thunk.

Oh, and just as he was leaving Polly pointed out that the electrically operated back gate is beginning to crack. The poor man winced. I think I saw a tear in his eye as he left counting the days to his retirement.

They Came From The Sky

“There are some men here,” said Godfrey, my carer, shaking me awake. “They come from Sky.” At last! I thought. Aliens. I always knew Erich von Daniken wasn't completely bonkers. “They have come to install cable.” It was 8.45 this morning. Not exactly the crack of dawn I know, but I was still half asleep. “Shall I let them in?” Godfrey was looming over me. Aliens wanted to install cable in my home. They come from outer-space and they come with power tools. Hang on..,

A few weeks ago I had made a terrible mistake and endangered my marriage by allowing a TV aerial socket to be installed in completely the wrong place. (See The Wrong Thing.) Now the contractors were back to make good my calamitous error by moving the socket to a Polly approved location and installing another in the bedroom. Godfrey continued to stand patiently awaiting instructions. I dimly recalled Polly saying they were coming today, but she would never have arranged for them to come before 10.30am, because she knows that it can take until then for the carers to prise me from my bed, get me up, washed and dressed and infuse me with jet black coffee. I blinked at Godfrey a couple of times and tried to speak. All that came out was a croak. My mouth in the morning, after a night on the ventilator, is drier than a camels sense of humour. Godfrey gave up. “I will tell them they have to wait.”

Some 20 minutes later, as Godfrey and Abby eased a jumper over my head, I asked where the contractors were. The flat was eerily silent: “They wait,” said Godfrey. Abby nodded in confirmation. I wheeled down the hallway and into the living room. It was empty. I glanced through the window. There, in the garden, stood three men, huddled together in the drizzle. The electrically operated gate had swung closed, trapping them like exotic zoo specimens in an outdoor enclosure. They watched morosely, through the window as Abby struggled to fit the footplates on to the wheelchair and Godfrey brought in a large mug of steaming coffee and placed it carefully on the table. Satisfied that all was ready he went to the door, unlocked it and opened it. “You may come in now,” he said to the three shivering workmen, loaded down with drills and co-axil cable, and who were, inevitably Polish, with barely enough English between them to ask if you needed a conservatory built. They glowered at Godfrey who smiled benignly back at them. “He is ready now. You may start.”

I haven't been able to check the socket in the bedroom yet. I won't be surprised if it only receives Polish reality TV documentaries about paint drying.

The Fabulous Adventures Of Wheelchair Man

Sometimes you paint yourself into a corner. I, like countless other parents around the globe, tell my children bedtime stories. And when I can't stand another Horrid Henry or Captain Underpants story I make one up with the help of Matty and Sam. By far and away the favourite of these made up bedtime stories are The Fabulous Adventures of Wheelchair Man, in which the eponymous hero and his two sidekicks, Speedster Sam and Destroyer, save the world and, not infrequently, the entire solar system. Wheelchair Man is a mild mannered father of two with a wheelchair that, at the press of a button, transforms into a flying, laser shooting Superchair. The boys, who chose their own hero names and powers, super speed and super strength respectively, assist their father in his missions to save the world and demand disabled access to the Fortress of Evil. All the adventures, alien invasion not withstanding, have to be fitted in around school and homework, or, as in the case of the current adventure, during school holidays, because saving the world is all well and good but if you can't read and write how will you be able to understand the instruction manual of a top secret space ship?

The stories have a somewhat eccentric narrative because both Matty and Sam like to fully participate in the telling, so anything from monkeys to red-armoured scorpion robots have to be incorporated. Matty, who has improvisational skills to dazzle Robin Williams, likes epic adventures with lots of battles and cliffhangers. Sam is currently most concerned with finding the exact right word to initiate the transformation from school boy to superhero. “Transformulation!” seems to do the trick at the moment. However, since each metamorphosis requires getting out of bed and spinning around whilst shouting the trigger word, we tend to limit the number of times school boy Sam is required to become Speedster Sam each episode.

Currently, the super team are on a remote tropical island helping a team of scientists to install 'the tower of electricity', which will help solve the worlds energy problems. They've already battled pirates and now, whilst exploring the island and rescuing a trapped monkey, have been caught in a deadly trap themselves. With Destroyer down a spike filled pit, Speedster Sam entangled in a net hanging from a tree, and Wheelchair Man faced with a ramp steeper than 1:12 (and a huge number of guns), can they escape? If yes, then how? Let me know, there are only a couple of hours until bedtime!

A Skeleton Walks Into A Bar

Life proceeds as normal. Last night the BiPap ventilator started bleeping again. This is the replacement BiPap remember. The previous one set off its alarm 269 times in one night. This one didn't reach those giddy heights but it was enough to ruin the night. So now I have a replacement replacement machine.

Sam is sick. Typically, after a couple of weeks of school, he has been struck down with the lurgy. The poor kid can't hold anything down and has spent the last few days moping about being miserable, alternating between queasy and starving hungry. Poor Polly has had yet more disturbed nights.

As mentioned yesterday, I have installed what we blogging geeks call a widget. If you look at the top right of this page you'll see “I Read This Blog”. Do please join in and sign up.

And finally, Matty is very keen on this joke at the moment.

A skeleton walks into a bar and asks for a drink.”Would you like anything else with that, sir?” asked the barman. “Yes please,” replies the skeleton. “A mop.”

Now We're Cooking

Just a very quick post tonight. The boys have both been away on sleepovers. It has been wondrous quiet. Polly has used the time to cook a vegetable Dansak for 80 people, in preparation for her birthday party in a couple of weeks time. She's also made Channa Bhajee and Dall for 80 as well so I hope everyone comes or guess what I'll be having for tea until Christmas next year.

Oh, and I've realised why I'm not sleeping so well. My air mattress is slowly deflating during the night. I'm ending up lying on a metal bed frame which seems to defeat the point of the hugely expensive equipment meant to facilitate a decent (bed sore free) night. Also the alarm keeps going off on the BiPap whenever I pull the duvet up near my face because it thinks I'm suffocating. If it keeps doing it Polly says she'll give it a reason to go off. Sweet dreams.

Bevan's Baby At 60

This week the NHS is 60 years old. I know it is a popular pastime to moan about the ever beleaguered institution and to prophesise its imminent demise but it truly is a wonderful thing. Just think about it, free health care from the cradle to the grave. Yes, I know we pay for it with our taxes but it is free at source when you most need it, whether that be after evening of binge drinking, drilling through your hand whilst doing DIY, or contracting a life threatening disease. Or, like me, have a congenital condition of the kind that makes insurance companies reach for the 'Sorry Closed' sign and avoid eye-contact with you. But how good is it? This good.

Yesterday morning, on the hottest day of the year so far, Polly and I got into our non air-conditioned van and drove in to London for me to attend the Lind clinic at the Royal Brompton Hospital as I do about once every six months. The Brompton is a hospital with a world-wide reputation as a centre of excellence for treating heart and lung disease and is a place I have been attending for the last eight years when I was first hurtled there in an ambulance with lights flashing and siren blaring after failing to recover from double pneumonia and escape from my local hospital's intensive care unit after 3 months. The lung wing of the hospital is based in a Victorian building and Lind ward is on the top floor. The waiting area is a long corridor packed with wheelchairs and people attached to portable ventilators and oxygen tanks. It's one of the few times I look at a group of people and think 'Cor, look all those cripples. I'm really fit.'

After a while someone cuts my earlobe with a razor blade and takes blood with which to analyse my gasses from. They check my BiPap machine settings and then it's back to the increasingly hot and crowded corridor where I slalom my way back through the wheelchairs, walking frames and oxygen tanks. We wait a little longer and then are invited in to a consultation room where I am seen by a doctor. We've met before and he is familiar with my condition. My blood gasses are just about okay but the time has come for me to use the ventilator for an hour or so during the afternoon to rid myself of excess CO2. Deep joy.

I hate using the BiPap during the day. I'm not that keen on it at night but when it broke down a few months ago I discovered what it was like to go without it. I'd spent the following day in a miserable fog of Carbon Dioxide infused headaches. So, love it or hate it, I'm stuck with it. Life with out it would be. . . well, short. The trouble with using it during the day is that it ties you down. You are connected to the machine via a mask and hose and the machine is connected to the mains via. a cable and plug socket. So you are stuck in one place for at least an hour. And they want me to do this every day. Now this is where it gets good.

They asked me what I needed.

I told them I needed a face mask that was suitable for use during the day. The mask I have been using is a small nasal mask which I fancy makes me look like a WWII fighter pilot, but in reality makes me look like a demented scuba diver. It is fine for sleeping with but if you move around it leaks and cold air under pressure is blown in to your eye. It also has a tendency to whistle tunelessly in time with my breathing. I also wanted a way to move around and if possible get outside, more than a few feet from a power socket, so did my BiPap have an internal battery? No. Go and see Steve said the doctor.

Steve is the ventilator man. Steve knows more about BiPaps, Cpaps and all things ventilatory than any one in the south of England. So, while Polly went to book my next appointment I took the lift downstairs to the sleep labs, where Steve hangs out. He greeted me in his usual friendly manner and after listening for a minute vanished in to a store room to reappear with a couple of items. The first was a new type of face mask that plugs directly into my nostrils and is so sophisticated it comes with its own CD-Rom and carrying case. The second item was a battery the size of a small paperback book. Steve apologised that it didn't come with a case but the company that supplied the battery changed extra for them. He reckoned that if you paid £500 (that's $997 or €631) for a battery you should get a protective cover thrown in.. He showed me how to connect it to the Bipap and then stuck a 'Property of The Royal Brompton Hospital' sticker on it and that was that. I wheeled away with both the things I needed to make using the ventilator during the day practical and comfortable. There were no quibbles, no money handed over, I didn't even sign anything. They just gave me the equipment for as long I need it. How good is the NHS? That's how good.

Happy Birthday!

Phone Home

Just a very quick post today. We have had to buy a new phone because the old one had become so faint sounding you had to shout very very loudly to be heard; so much so that you may as well have leaned out the window and bellowed in the general direction of the person you were calling. The new phone comes with a manual the size of the local telephone directory and has more computing power than my first PC. I've spent the day programming in numbers and choosing which of the 20 different ring tones to use. More importantly I've had to allocate different screen colours to each category of caller. Plus I've had to work out how to work the integrated answerphone and charge the thing. Polly is complaining that you need a degree in IT to use it. She has, however, chosen the screen saver: a Basset Hound with it's ears flapping. I despair. The phone is a sleek, black technological marvel but is sitting on its sleek, black elegant stand with a dopey long-eared dog glowing on its brightly lit LCD screen. It's a travesty.