Not Just A Mattress

For anyone who has been following the saga of the mattress, you will be thrilled to know that we have made significant progress. Well you may not be thrilled but I am. A few days a go a new mattress arrived that whilst similar to the previous one is subtly different. Instead of tubular cells filled with air this one has square cells. I am no longer slowly rotated at night but instead I lie supported and immeasurably more comfortable. Of course the new mattress is not really a mattress but is, in fact, an Advanced Dynamic Floatation System so obviously it is going to be more comfortable than any boring old mattress.

The last few nights have passed with a delightful lack of wakefulness and both Polly and I feel much better for it. I was even able to face Sam's sports day and see his team aquit themselves well in the beanbag-on-the-head and the potato-in-a-sieve relay races. I also went to see Matty perform all sorts of kicks and punches as he qualified for his orange belt in Karate. Matty is now able to protect himself against barefoot children in white pyjamas who shout “ Ai! “ whenever they move slowly in a threatening manner.

Bye until next time.

Perchance To Dream

It is probable that during the course of this post I will fall asleep. The last few nights have been truly miserable and I ache and I am grumpy and I can hardly keep my eyes open.

It is all the fault of the bloody air-mattress. It seems like a simple proposition. You lie on a mattress inflated with air. The air is gently circulated around chambers in said mattress thus reducing the likelihood of pressure sores and, as an added bonus, allowing a small degree of movement to anyone with strictly limited movement. Someone, picking an example out of the air, like me.

I have been complaining about my mattress for quite a while. Until recently I was sleeping on one with the comfort rating of a kitchen work surface. It moulded to my body in the way that granite doesn't. Any circulation of air was only detectable with instruments purchased from the manufacturers of the CERN Hadron collider. The children refused to bounce on the bed because they said it caused compact fractures.

I currently have an air-filled overlay on a memory foam base. Now I can feel the air circulating all right, but the effect is to cause me to roll backwards in my sleep, turning me like a frankfurter on one of those warmers you see in cinema vending areas. I then get stuck in unbearably contorted positions that require Polly to engage in bleary-eyed remedial disentangling procedures. Last night there were seven such instances and I feel like a piece of string at a cub scout knot tying practice session.

I have now tried all the alternatives available through the community occupational therapy service. I have identified the product I think I need. I have at least two senior consultants saying it is a medical necessity. Everyone seems to agree that it is worth trying but can I get hold of the bloody thing? Can I buffalo. Emails and phone calls vanish into the ether. The details wander lost through cyber-space and everyone seems to want one more level of clarification before they can act. It's only a mattress! I know it's quite an expensive one but surely we could hire one for a few weeks to see if it helps. It must be cheaper than paying for the hours of anger management therapy that I will require if I don't get a good nights sleep soon. And think of Polly. Every time I need moving I have to wake her up. We've barely had an uninterrupted nights sleep in months. For pities sake, if any of the many health care professionals reading this don't act soon there will be a tragic case of matresscide to explain to the public inquiry that will surely follow. Act now and save your careers and reputations.

Right, I'm off for a coffee. Triple espresso I think.

Don't Bat An Eye

I am so sorry for the lack of posts recently. This is entirely down to the fiendishly tedious manner by which I am compelled to type these days. It is terribly frustrating, laborious and time consuming and deeply depressing. I know some profoundly disabled individuals manage to write entire novels by batting their eyelids one letter at a time but they must be blessed with powers of persistence and patience way beyond mine. Even though I am using sophisticated text prediction software just writing this paragraph has taken more than fifteen minutes. At some point in the near future I am going to have to invest a great deal of time and, no doubt, money in improving the situation.

The last week or so has seen the south-east of England in a heatwave, with temperatures regularly above 31C. Generally I enjoy hot weather but sitting on a metal ramp in a metal wheelchair has been a bit much even for me. It's been like carrying your own radiator around with you for a week.

Right, enough for now. I will be trying to write little but more often in future. Please bare with me. I will be exercising my left eyelid in preparation for future posts.

What A Shower

Every so often someone comes up with an idea to improve my life – whether I like it or not.

In recent months I have been unable to use the shower-stool attached to the wall in our bathroom because I keep falling off it. The whole losing my balance thing has made showering the dangerous option when it comes to personal hygiene. My ingenious solution has been to have my showers dangling in the sling under the hoist, like a kind of dope on a rope. The problem with hanging in a blue nylon net-like sling whilst being hosed down by carers is that it is both uncomfortable and inefficient. You are inevitably somewhat scrunched up, with straps cutting into all sorts of intimate and unmentionable bits of you. And, when you are hanging like the catch of the day, it can be difficult to get the sponge in to all the... er. . . nooks and crannies, so to speak. Oh, and it can chafe.

Anyway, the occupational therapist was horrified when she learned of this situation and felt duty bound to do something about it. The result has been the arrival of an enormously large blue shower-chair on wheels, that takes up nearly a quarter to the bathroom floor space and needs to be wheeled out whenever anyone else wants a shower or whenever I want to use the bathroom at all. This shower-chair can tilt and be manoeuvred to allow all over access when showering. It was sold to me as being both more comfortable and as saving me a transfer on shower days because it is designed to fit over the toilet.

On Friday Kalapo and Godfrey dutifully and carefully hoisted me from the bed on to this monstrously huge chair and negotiated me down the hall and reversed me in to the bathroom toward the lavatory. Suddenly I felt cold porcelain smash in to my coccyx. Kalapo and Godfrey tried again. Perhaps if they pushed harder? They tried. I can tell you from personal experience that porcelain is not in any way malleable. The shower-chair may well be huge but it is not, as it turns out, particularly high.

In the end I was hoisted from the shower-chair to the toilet and back again and then wheeled directly into the shower whereupon things proceeded as they should. I was tilted, spun, hosed, sponged and towelled before I knew it.

It was only later that Polly pointed out that the shower-chair had extendible legs.

At least I'm clean.

Not Just A Chair

Oh the dilemma.

If you have had the time or inclination to read previous posts you will have discerned, via the subtle shades of my writing, the merest hint that all is not well regarding the stability of my Muscular Dystrophic condition. Reading between the lines, the more astute among my readership will have gleaned the faintest inkling of my dissatisfaction with the situation, and some may even have gone so far as to wonder what, if anything, can be done to help.

The problem, in a metaphorical nutshell, is that the loss of core muscles in my trunk means that balancing my body has become wearing in the extreme. Every movement requires micro-adjustments and my wheelchair does not give me sufficient support to allow me to rest in one position for any length of time. As a result my shoulders, legs and back ache constantly and physically it is very tiring. The solution would be a new wheelchair that is infinitely adjustable at the touch of a button; but do such chairs exist? Of course they do, if you have the financial resources of, say, the arms budget of a medium-sized developed nation. They are called 'life-style' chairs.

However, having appeared appropriately pathetic before all sorts of doctors, OTs, physiotherapists and wheelchair service personnel the powers that be have determined that, in the long run, it will probably be cheaper and less hassle to give me a super-duper new wheelchair than have me clogging up their waiting-rooms and clinics or writing disparaging blog posts about them whilst demanding ever larger amounts of expensive drugs. To this end a man in a van came this morning with a demonstration version of a chair called a Salsa.

To you a Salsa is a sexy dance with a variable Latin rhythm, to me it's a sexy wheelchair with variable actuators. I was hoisted with my usual graceful dignity into the aforementioned chair and various adjustments were made and measurements taken. You can't buy one of these chairs off the shelf, they are bespoke. The intention is for mine to tilt back and forth, have a variable backrest and adjustable footrests, all controlled from a joystick and set of rinky-dink buttons positioned on my left. The controller seemed to have more buttons than a Grenadiers dress uniform. Obviously I couldn't help but fiddle. After pressing a seemingly random combination I found myself rising into the air. Up up and away I went until I was looking down on Polly and my head brushed the light-shade. It is years and years since I stood so tall. I resisted the temptation to tell Polly her roots need re-doing (they don't! Her hair colour is completely natural) and realised that Sam had hidden the TV remote up on a hitherto unseeable shelf. I hummed that song by the Carpenters about looking down on creation. This was brilliant! It had no clinical value whatsoever but it was still brilliant. Slowly I came back down to earth. The nice lady from the wheelchair service looked anxiously at her notes and reminded me that a seat riser was not in the specifications the NHS were budgeting for. “It's another £1100 more, ” the man concurred cheerfully.

So, here is my dilemma; do I spend more than a thousand pounds on a an extra bit of wizardry that enables me to go up an down and look grown-ups in the eye? I know I don't NEED it, but. . .

They took the demo chair away and have promised to return with a sparkly new one for a second fitting at some unspecified point in the future.

I'll keep you informed.

Back To School

How do I get myself into these situations I thought as I faced a group of ever so slightly surly looking teenagers. It was yesterday morning and I was sat with Polly in a small classroom in a centre that educates teenagers who, for various reasons, can't be taught in mainstream schools. I had been invited to talk to them about 'over-coming disabilities' by a friend, Karen, who heads up the unit but in a previous life had been an actor with whom I had worked with many times. Several weeks earlier it had seemed like a good idea but now the reality was before me in the form of a dozen kids and several support staff.

It was pretty obvious from the start that any dissertation on social constructs and disability models was not going to cut it with this crowd. Instead, with Karen asking leading questions, I embarked on a series of personal anecdotes about my childhood, schooling and early employment, before talking about college and how education gives you wider options and opportunities. To my relief and surprise I could see that the youngsters were engaged and listening. When Karen asked me how I coped with overt discrimination I explained that I took the anger and compressed it into a white hot ball of fury and pushed it way down deep deep inside me and then once in a while I would let it explode as I went mad with a machine gun. The staff all moved back a little but the kids fell about laughing.

Polly told them a potted version of our romantic history. The boys rolled their eyes and the girls went aah. They all liked the fact that I wooed her with fruitcake rather than flowers.

At one point we talked a little about ethics, and after Karen had explained what ethics were, Polly and I told them about the terrible decisions we were faced with whilst having Matthew and Sam. As I explained the 50/50 nature of inheriting FSH Muscular Dystrophy by asking them to imagine flipping a coin you could have heard a pin drop.

We finished with a Q and A session where the questions asked and the ensuing discussions showed that they had taken on board and appreciated the subject-matter. When asked how to approach someone in a wheelchair I told them to look at the person not the chair. It might be that the person in the wheelchair was witty, intelligent, sophisticated and immensely charming like myself, or, just as likely, a complete plonker. But, unless they engaged with them in the first place they would never find out. Hardly ground breaking, barrier smashing stuff, but true nonetheless.

For a bunch of difficult teenagers who can't cope with mainstream education they turned out to be rather nice, interested and interesting people. Who'd have thought it.

Mobility Roadshow

The problem with not having blogged recently is that I have a backlog news and views to impart. For example, I have been beset by community physiotherapists, speech therapists and OTs who have all made eminently sensible suggestions and any one of them would have made for a good post. I also made the journey to King's Hospital to see Dr Rose and his team where I was assessed and plans were drawn up, strategies devised and letters arranged to be written. Dr Rose also, and most importantly, helped me to get a handle on what has been happening to me regarding my Muscular Dystrophy.

The last few months have seen a disconcertingly rapid slide in my condition which shows no sign of slowing. Since Christmas I have lost the ability to raise my arm to feed myself (although that's been slightly compensated for by my bionic arm) and, most alarmingly, the core muscles around my trunk have weakened to the point where my balance is severely compromised. The continual micro-adjustments needed to stay upright are exhausting and painful. A lesser man than myself would moan and probably sink into deep depression and write a blog telling the world about his problems. A lesser man might, I however will only mention it in passing. According to Dr Rose the Dystrophy is not accelerating but continuing on it's natural slow decline at a steady rate. What has occurred recently is that several muscle groups have reached a kind of tipping point and, like a Labour cabinet minister, given up their support. Believe me their disloyalty will not be forgotten. The net result is that I have to work a awful lot harder to maintain the physical ability I had last year, last month, or even last week. Time to act.

I need a new wheelchair. More about that soon.

Yesterday we all headed west to Cirencester and the Mobility Roadshow to look at wheelchair accessible vans. It was a lovely sunny day and we were up and off at the crack of dawn to travel more than one hundred miles to an airfield in the heart of the countryside. There we looked at a dozen or more vehicle conversions.

It was great meeting a few of the readers of this blog in the real rather than virtual world as we wandered around dodging people test driving their new scooters and exhibitors handing out forest loads of leaflets promoting products like wheelchair slippers.

In the end we settled on a Volkswagon Caddy Maxi conversion by Lewis Reed, a car that seats 5 plus a wheelchair. You would be amazed at the variations that can be achieved on the same base vehicle. Some of the wheelchair entry ramps required a weight-lifter on steroids to lift them and others a Mensa level IQ to work out how to operate them. Some of the conversions seemed to have favoured plastic as their primary construction material. Unfortunately they have valued it gram for gram as gold.

In case you think we must have won the lottery we can only afford a new car because I have an incredibly lovely and generous brother and sister.

We eventually made it home just in time for the carers to put exhausted little old me to bed. Unfortunately my profiling bed decided to take this opportunity to breakdown. It would go up but not down. By the time we had fiddled around it ended up stuck five feet in the air. I spent the night hovering above Polly with her gazing up adoringly at me.

More soon.

Still Blogging On

I'm sorry that I appeared to have disappeared from the blogosphere recently, I'm all right, honestly. A combination of annoying difficulties to do with actually typing words, sheer business and a run of good weather have conspired against my blogging duties. Thank you to those who enquired as to my virtual whereabouts During my hiatus various things have been happening.

Polly and I made the trek in to London for one of my regular appointments at the Royal Brompton Hospital. While I waited among the wheelchairs and breathing apparatus Polly went on to her Clown Doctor office in Islington to sort out her expenses form. I read my book and waited, nodding occasionally to nurses, doctors, phlebotomists and sundry support staff I have come to know over the years, and watching the assembled disabled folk wheezing and waiting. Steve, a technician, took blood from my earlobe and tested my blood gasses and eventually I was ushered in to the consultant's consulting room. Dr Simmonds checked me over and pronounced that my carbon dioxide levels are elevated and that they could, in theory, be exacerbating the somewhat unnervingly rapid deterioration in my muscular dystrophy. More time on the BiPap will be required and the various settings will need to be adjusted to compensate. On the plus side, it might help.

By way light relief, and it being half-term, we took the boys to the cinema to see A Night In The Museum 2. It being half-term and raining the cinema was packed full of screaming, overly excited children, all munching vast buckets of popcorn and other noisy comestibles. We had to wait until a later screening than we had intended and had to queue for what seemed like hours by a poster advertising a film called Drag Me To Hell. Enough said.

I've more to tell you but my patience with tapping out one letter at a time has worn thin.

Oh, by the way, we're off to the Mobility Roadshow near Cirencester on Thursday, so if you are intending to go, drop me a line or leave a comment and maybe we can rest our weary wheels and grab a coffee together.

Bye for now. I'll be back soon.

Speak Easy

I have a new on-screen keyboard I am trying out, it has lots of fancy predictive text facilities that should, in theory, speed up my typing. I can but give it a go.

Yesterday I was visited by a speech therapist who came to remind me how to talk, which was very useful because it is the kind of thing I might forget left to myself. Apparently I have a tendency to Dysarthria, which means slurred speech, something I used to achieve with a bottle or two of wine but now comes naturally. Who says I'm not making some progress. She asked me it I wanted to consider using a voice amplifier. This would mean wearing a head microphone and a small speaker but would make shouting at the kids easier. The problem, as I see it, is that the small speaker looks as though it was designed circa 1979 in beige plastic, and lacks even a retro nostalgia. Imagine an ipod speaker designed by Tupperware.

The speech therapist gave me a helpful advise sheet which includes useful suggestions such as “ Do not carry on talking when your breath has run out. Stop, breathe in and carry on.“ I think you will agree that that is very sensible and I will seek to do just that.

Until next time... Breathe in, breathe out.

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.