Wednesday, 30 December 2009

That Was The Year That Was

As we slide down the razor blade of life (as Tom Lehrer had it) into 2010 I am compelled by convention to look back on 2009 with consideration.

I had a run of deterioration in my Muscular Dystrophy which caused me some concern early in the year but a new super-duper wheelchair has gone some way towards compensating for that. I lost the ability to raise my arm in such a way as to be able to eat meals. A devise called a Neater arm has greatly helped with that problem. Frankly it was a bit scary at the time but I've got a new consultant at Kings who actually knows something about FSH MD and managed to reassure me that my condition was not spiralling out of control, just reaching a tipping point. The new wheelchair combined with a decent air mattress has meant I've been able to cut down on about 90% of the painkillers I was on. I've decided to postpone my demise for another year.

Sam has had his kidneys scanned and they have been deemed satisfactory. Matty is now wearing glasses, something he is perfectly happy with and he is now perfecting his geek-chic look. Polly has now qualified as a fully fledged junior Clown Doctor. She works once or twice a week at Great Ormond Street Hospital and the Royal Marsden. The work is sometimes traumatic but always deeply rewarding. For reasons I don't fully understand she has decided to learn how to play the ukulele. And since Matty is intending to learn the guitar I dread to think what our home will sound like next year.

A highlight of the year was when we received our new car, a Volkswagon Caddy. It is significantly longer than our old van which means we all have a bit more space. We only have this fabulous new vehicle because of the generosity of my brother and sister. Best of all, it arrived in time for our holiday in Wales.

Since I last blogged we have attended the deadly Christingle service where hundreds of children wave oranges with lit candles stuck in them around. This year both Matty and Sam took part in the Nativity play. Sam was a fearful shepherd. He was given the direction to look scared when the angel of the Lord appeared. While the other shepherds stood rooted to the spot Sam 'acted'. You would have thought that the angel Gabriel had appeared in the guise of Freddy Krueger. Matty meanwhile was cast as Joseph. He managed, with 9 year-old aplomb, to walk Mary to Bethlehem in a manner that showed loving, husbandly devotion but at the same time subtly conveyed the message that, in real life, he and the girl were not actually an 'item'.

Christmas day morning was spent at home in a frenzy of present opening and included a visit from Nanny, Pam, Polly's mum. In the afternoon we travelled to Dulwich and my brother Simon's new house. To get into the house I had to cross the gravel driveway in which I got stuck. The tread of my wheels became embedded with tiny stones which had to be individually removed before I dared move onto the newly fitted real wood flooring. We had a great time as my entire family gathered, including my sister Helena and her family all the way from Texas. Fortunately Simon and Jaspreet's house is huge so 6 boy cousins and 9 adults had plenty of space. In fact, had we wanted to, I think we could have played 5-a-side football in the living room.

So, as 2009 comes to an end I'd like to thank everybody who has kept me alive this year and to everyone who reads this blog. I appreciate your company and your comments. I hope you will stay with me for the new decade. I'm certainly intending to stay with you. Happy new year.

Until next time...

Wednesday, 23 December 2009

Blackout - Call 999

I feel sufficiently recovered to tell you about the events of Sunday night. Those of a nervous or sensitive disposition should skip this post and find something nice to do like decorating a pine tree.

Sunday evening had been very pleasant. Polly had performed at her last party of the year, danced the 'I've finished! I've finished!' dance, and we had celebrated with a rare Indian take-a-way. We don't eat take-a-way very often because oily food makes my chest bubbly, but the last party of the year is always a momentous occasion and must be marked accordingly.

By the time the carers arrived I was feeling a little bubbly but was not unduly concerned because I would soon be in bed on the BiPap ventilator. And so it proved. While Polly watched Cranford, a BBC costumed melodrama on TV, I was retired to bed to happily read Bernard Knight's Fear in the Forest. It felt a bit like breathing soup but the BiPap forced air in and I relaxed into it knowing that eventually the mucus in my lungs would be broken down into a kind of froth that could be relatively easily coughed up. The process was taking time but I was engrossed in twelfth century Exeter's problems and so focussed on those rather than on the crackly noises coming from chest.

And then there was a power cut.

The air being pushed into my lungs stopped mid-breath. The room was plunged into darkness and the alarm on the ventilator started its piercing shriek. The rational part of my brain assured me I wouldn't suffocate but the more primitive part knew this was nonsense and that death was imminent. I tried to suck in air through the now useless mask but the froth in my lungs gave the illusion I was drowning. The suddenness of having the breath snatched from me caused me to briefly panic and I had to fight to calm down. All this took only a few seconds. I then heard Polly rushing up the hallway and her voice telling me it as all going to be okay.

My bed is an electric profiling bed that can be raised or lowered, tilted or reclined to help me change position or sit up. The operative word here is electric. During a power cut it is just a bed. Polly came into the bedroom knowing she had to sit me up because breathing whilst lying down is difficult for me. Using leverage and brute force she raised me to a sitting position and removed the mask. She then rushed off to find a torch and then the emergency battery pack for the BiPap. It took a few moments but soon the ventilator was working again and the mask was back on. Air rushed back into my now aching lungs but the mucus had shifted and part of my lungs were blocked off. Polly helped me lie down again.

Other problems were arising. Our heating had gone off and as snow was falling heavily outside the temperature was already plummeting. My electric blanket was now just a rapidly cooling thin sheet. In addition, my electrically powered air mattress was deflating beneath me. Still, at least I could breathe. Polly looked at the control panel on the BiPap. It told her that the emergency backup battery was only a quarter charged. I had, perhaps, an hour and a half of breathing time. I couldn't get out of bed and transfer to the wheelchair because the hoist is, you've guessed it, electrically powered.

Polly rang the power company and explained the situation. The outage was extremely local, affecting only a few houses around us. Our upstairs neighbour had no power but the flat above her did. The house next door was in darkness but across the road Christmas lights shone. The customer service manager at EDF was full of sympathy at my plight but regretfully informed Polly that they would not be sending an engineer out before morning. What, Polly asked, was I supposed to do when the backup battery ran out and I started turning blue? Call an ambulance, she was told. Polly dialled 999.

Within a short while an ambulance duly arrived complete with two green clad paramedic type women who quickly grasped the situation but were at a loss at what to do. They could take me to hospital where there was at least power and warmth but transferring me there would require another ambulance team to safely move me without the use of the hoist. Even incapacitated as I was this seemed a bit too much. The weather outside was treacherous and the emergency services were already stretched. The ambulance woman called the power company herself and put a flea in their ear.

By now our neighbours were anxiously hovering, alerted by the presence of the ambulance, and offering any help that they could. Then Polly had a brainwave. We could run an extension lead down from the top flat where there was electricity. Fortunately our next door neighbour was able to rummage in his company van and produce an industrial length cable which could be trailed three floors down and through our flat into our bedroom. Within a few minutes we had limited power again. My mattress began to re-inflate and my electric blanket began to warm up again. Crisis over. Or so we thought.

Polly said goodbye to the ambulance crew and apologised for having called them out. Oh no, they said cheerfully, it made a pleasant change from picking up drunk people who had slipped on the ice. They departed to fill in forms about the incident.

I'm not exactly sure what caused what happened next. I think the sudden changes in pressure, position and temperature had caused the sticky and frothy mucus in my rather abused lungs to foam into my mouth where due to the forced breaths from the ventilator I swallowed it and great mouthfuls of pressurised air. The contents of my stomach rebelled and a grim combination of semi-digested curry, mucus and medication came up in to my mouth. This would be nasty under any circumstances, but remember, my ventilator was forcing me to take regular breaths regardless of whether I was being sick at the time. I was in real danger of choking.

Polly took one look at me and came as close to panicking as she ever has with me. She made a dash for the front door and waved down the departing ambulance. Moments later the two ambulance women were back looking down at me anxiously. “Get some suction,” said one of them, and I suddenly felt like I was in an episode of Casualty. One of the crew admitted frankly they were a bit out of their depth. They took my sats (96% on the BiPap) and my blood pressure (slightly raised) and my temperature (normal) but since they didn't know what my baseline was they weren't sure how useful the information was. Still, it gave them something to do.

I kept being sick and they kept telling me not to breathe it into my lungs. It is generally agreed among medical folk that aspiration pneumonia is something to try and avoid – so I did. It wasn't easy but, as you will have gathered, I somehow managed. When there was nothing left in my stomach I finally stopped being sick. Everyone breathed a sigh of relief. Well, everyone except me; I sort of bubbled.

Once they were satisfied I wasn't going to expire the ambulance crew left to pick up more drunken ice-skaters. I drifted off to sleep leaving Polly to recover from a near nervous breakdown. “God, you're a lot of work,” I heard her mutter. Good job she loves me. The power came back on a couple of hours later. Apparently EDF relented and sent out an engineer. I woke up a few times during the night with a raging thirst but Polly would only let me sip a few drops of water for fear of me drowning or something.

I would like to thank the ambulance crew who were a reassuring presence and very patient. I would also like to thank our neighbours who rallied round and made a real difference. I am a fortunate fellow indeed to have so many people around me who are prepared to endure snow and freezing conditions to help.

This will probably be the last post before Christmas. This afternoon we are taking the boys to see Father Christmas at a local grotto and last night we took them to see Thumblina at the Charles Cryer Theatre in the village. After the events of Sunday night I'm grateful to be well enough to enjoy these seasonal experiences with them.

Merry Christmas to everyone kind enough to spend time reading this blog. I truly appreciate it. I'll try and squeeze in another post before the new year.

Seasons greetings. Until next time...

Monday, 14 December 2009


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...

Thursday, 10 December 2009

The True Meaning Of Christmas

As any parent knows, 'tis the season to watch your children dress up as angels or shepherds or, in my case, angry chefs. Yes, I've been to see Sam in the infant school nativity play this afternoon. The age old story was told this year using the conceit of Ned the donkey seeking out the true meaning of Christmas.

There is something wonderful about sitting in a crowded school hall, searching the assembled ranks of costumed children, who are in turn searching the audience, for that spark of mutual recognition. The surreptitious wave, Sam's grin and the look of possessive joy and slight relief that daddy is there to see him perform will be a memory that forms one of those great pleasures of parenthood. He is dressed in black and white, wearing a chef's hat, and is only partially obscured by the piano. As Ned searches for the true meaning of Christmas, Sam and his band of angry chefs prove that the festive season is not all about food, with my boy delivering his one solo line, “With flour in my hair!” loudly and clearly. It is up to other parents children to dismiss toys and even Santa as being the essential element of Christmas but my attention is focussed on my child as he sings and dances his way towards the nativity. Eventually we learn that Christmas is about a baby, born in a stable and, as demanded by tradition and grandparents in the audience, Away in a Manger is sung.

Last week I trundled over to the school to see Matty in the junior school performance of Panto-Pandemonium, a witty subversion of traditional pantomime stories. Matty was a member of the vast choir that supported the big kids of year 6 who got to do all the acting. Next year Matty will be one of the big kids of year 6 and he is already angling for a major role. He lives in genuine terror that the school will change its tradition and next year the acting will be shared out amongst the years and as a result there will be less starring roles for him to audition for. Matty is determined to be an actor and sees next years Christmas show as his potential big break.

We are now well into the festive season as far as the school is concerned. Tomorrow the boys have their Christmas dinner. I may be persona non grata after Sam told his class that daddy says sprouts are the devil's food. Next week they have their class parties. Matty has to take six satsumas. I'm sending Sam with a bag of sprouts.

Until next time.