The Healing Power Of Homecare

One of the best things about writing a blog is that when strange or exasperating things happen to you you at least have the compensation of thinking that it will make for an interesting post. I've been thinking this a lot recently.

With Godfrey off ill and Kalapo in Nigeria I've been left with a team of stand in carers. I've mentioned Abby and Carlotta previously. They are sweet women with minimal English who bicker and panic their way through each evening and morning call. Carlotta, who is a devotee of some Japanese spiritual enlightenment movement has taken to holding her hand a few inches from my body and transmitting healing energy in to me. She assures me it doesn't matter if I believe or not which is probably a good thing because I'm pretty sure that any heat that I am supposed to be feeling is coming from the mug of coffee I'm drinking than from any form of science defying psychic energy. Abby is becoming more and more irritated to find her colleague standing over me apparently doing nothing. Carlotta hisses that Abby must not know what she is doing because she is not a believer.

Yesterday Carlotta went back to school so she will not be coming so frequently. She says she plans to visit family in Paris next weekend and promises to bring me back some French cheese. As I said, very sweet; it's just a shame she is is mad as a box of frogs. Carlota's replacement is Lola, a rather surly woman who seems to begrudge having to make evening calls, telling Polly she expects me to be ready to go to bed at 8:30. She can expect what she likes.

Meanwhile, Lola is being taught the ins and outs of my homecare by Abby who barely manages to remember her own role, let alone someone else's. As a result I spent several terrifying minutes dangling over the toilet yesterday while the two women randomly pressed buttons on the hoist remote control before calling for Polly to come and sort them out.

Oh, and just in case you think my days are any better, Polly is off learning to be a clown doctor again and the district nurses have been organised to come to help me go to the loo sometime between 2:00 and 2:30pm. It's now 3:15pm and there's no sign of them. If I knew for certain they would definitely turn up I'd be in half a mind to wet myself just to give them the extra work.

Thank you for reading.

P.S. They arrived at 3:25pm, very apologetic. Now I feel guilty.

Wee'll Meet Again

You may feel this blog has strayed from the disability issues theme, what with parties, sick children and elephants of late. Well never fear, the disability factor is back. You may want to cross your legs for this.

Polly, as you know, has recently been accepted to train as a Clown Doctor. This involves a training schedule that would stretch your average neurosurgeon and which started this week. From Tuesday she has had to be in Islington or at Great Ormond Street Hospital for Sick Children by nine o'clock each morning so has had to leave by 7.00am and does not get back until 7.30pm. This has involved some pretty fancy childcare arrangements and a great reliance on family and friends to get the boys to school (particular thanks to Andi, Emma and Pam) and to cubs, swimming and what have you.

I feel I should say at this point that on more than one occasion Polly has been assured that if she wants to work full-time then she most definitely can. The whole social-care system will facilitate her to fulfil her destiny and will step in to help provide care for me should the need arise. Her needs are every bit as important as mine. Thus reassured Polly and I feel that a bit of Clown Doctoring is well within the realms of feasibility and a not unreasonable ambition. Polly wants to do it and I want her to do it, too.

Kalepo and Godfrey come and get me up and can hang around until about 10.30am, so the last time I can go to the loo is at about 10.00am. Polly therefore dutifully rang my care manager and told her the situation, giving her the dates and asking if it could be arranged for Kalepo and Godfrey to pop in mid-afternoon over the course of the 4 days to give me a hand. No. Since I've been transferred from social care to medical care it would be cheaper if the district nurses came instead. Okay. Two of them came around one afternoon and Polly and I explained the procedure. All well and good.

Tuesday came and my mother-in-law Pam came over to take the boys to school. As it turned out Sam had been sick again and was off for the day so she kindly stayed here to look after him. The hours passed and there was no sign of any district nurses. Pam had been supplying me with a steady flow of coffee and so by late afternoon I was beginning to really feel the need for the loo. Eventually, I had to ask Pam to help me. She graciously and with good humour pulled legs and passed bottles and generally helped me get sorted.

You may be wondering why I didn't phone the district nurses and simply ask where they were. This would tell me you have never had dealings with district nurses. They are akin to the gold at the and of a rainbow, forever just out of reach. You can't call them directly and so have to rely on messages and answer machines. Or, just as effectively, ESP and smoke signals.

That evening Polly rang, left messages, released carrier pigeons, and so on. Wednesday would be sorted. A good thing too as there would be no Pam around today.

You can probably guess what happened. Nothing. Without Pam around I had been able to severely restrict my fluid intake, but, even so, nine and a half hours is an awfully long time. To make matters worse I had to take the boys out to tea and take Sam to his swimming lesson. Splish splash. I made it, but if there are awards for iron will and endurance I deserve one. I was relieved in so many ways when Polly finally came home.

That evening there was an extensive, frank and comprehensive phone exchange between Polly and someone at the district nurses administration. Finally, everything was sorted.

Which brings us to today. At 1.00pm two nurses arrive. I hardly need to point out that 1.00pm is not mid-afternoon. Still, only six and a half hours 'till Polly gets home. Fingers (and legs) crossed.

A Series Of Unfortunate Events

I enjoy writing this blog, it keeps me entertained and apparently one or two of you as well. It does, however, present me with a problem. How much detail should I go into when discussing the ups and downs of my disability? Of the hundreds of you who will read this I only know in the real world a handful of you. The vast majority of you will only ever know me through this blog and the miracle of cyberspace and the picture I paint of myself is the one you are stuck with. My sunny nature, sweet disposition and fabulous good looks are something you have to take on trust. Unfortunately (for me) some of you really do know me. You may be one of my family, taking the occasional peek to check I'm not libelling you, or may be an ancient and decrepit friend from childhood who with rhumy eyes seek desperately for glimpses of lost youth and the hope of an immortality of sorts by mention on these electronic pages. (See you soon guys.) Equally you may be someone from my youth, with hopefully fond memories of teenage dalliance or sweet college days who read this blog out of affection and to provoke remembrance of when we were young, carefree and with the future laid out before us with it's tangle of paths not taken. Or you are someone I meet at the school gate, drink coffee with and go out with to the cinema or the occasional quiz night. The question is: how much do I want you to know? And equally importantly: how much do you want to know?

As the more astute among you will have realised I've been going through a difficult time recently. One of the reasons I started this blogging business was because back in April I realised that the FSH Muscular Dystrophy that affects me was starting one of its periodic stages of decline. Slings and hoists have been introduced into my life, afternoon sessions on the BiPap are now necessary, uninterrupted nights sleep are a thing of the past. But these things, though wearing, are bareable and in some ways even improve the quality of life. There are other aspects that are just plain miserable though, with no redeeming properties whatsoever.

Yesterday was the straw that broke the dromedaries spine. I'll keep the details vague, but it involved bathrooms and no time for hoists, humiliation and misery. It was the culmination of a series of horrible occurrences that pushed both Polly and me to the brink. At 3.15pm we called the doctor and at 6.10pm Dr Toosy arrived for a house call. There is no magic bullet but I have the feeling that a ball has started rolling down a hill of badly mixed metaphors and I have no idea where it will come to rest. Something needs to happen because if it doesn't I don't where I'll end up. In some ways it's a relief that things have come to a head. There is a kind of peace that comes with admitting you can't carry on as before, even though you have no clear idea what you can do about it. All I can suggest is that you keep reading and I keep writing. Wish me luck.

Bernie, the Bolt

I knew it would happen and now it has. We have started having evening care. So far it's only for two evenings a week, Mondays and Fridays. The whole 'going to bed' process is taking longer and longer and we both agreed that Polly needed at least a couple of nights off a week. (Polly has just looked over my shoulder as I write this and said that I make it sound as if she's going out clubbing on those nights. She doesn't of course, she goes out binge drinking.) (Oh, all right then – it's because she now has to help me go to the loo and adjust my feet on the wheelchair footplates umpteen times a day, gets woken two or three times a night to move my head, legs or shoulder, and make cups of very strong coffee on demand.)

I have resisted evening care up until now, not because I don't appreciate the help, but because the carers can arrive at any time and I don't want to go to bed at half past seven. After some negotiation the care providers have agreed to let me stay up like a big boy until at least nine o'clock so long as I don't want a bedtime story.

Last night two carers duly arrived post nine o'clock eager to help. We all agreed that rather than wait for me to make the laborious and time consuming transfer to the lavatory by myself they would use the hoist. Now it may come as a surprise but I have never been hoisted on to the loo before. So after some moaning about the type of sling that was used, we were under way. As my trousers were removed and I was lifted, semi-naked, by two strange women I muttered my mantra “Dignity, at all times dignity.” Unfortunately when you are aiming to be hoisted on to a toilet accuracy is important. It took several attempts and I began to feel as if I were partaking in a truly bizarre version of The Golden Shot. Bernie, the bolt, please.

Getting in to bed proved every bit as difficult. Some how the sling wasn't placed properly and as I was raised up into the air my naked bottom began to slip out and I was left dangling precariously as the carers frantically pressed buttons on the hoist remote control causing me to swing like a mooning trapeze artist. Dignity, always dignity.

Up, Up and Away

One of primary purposes of this blog is to document the changes in my condition. l. have Facioscapulohumeral muscular dystrophy (FSH), the 3rd most common form of the disease. The name describes the usual distribution of weakened muscles: facio=facial; scapulo=shoulder blade; humeral= upper arm It is estimated that between 1,200 to 3,000 have the condition in the UK. Now hang on for the sciencey, medical bit and you will know more about FSH than 9.999% of said population and more than most doctors. I quote from the Muscular Dystrophy Campaign website.

FSH is a muscle wasting condition that
affects both men and women. The
condition is caused by a deletion (loss) of
a piece of genetic material (DNA)
towards the end of chromosome 4. This area
contains a number of repeated units
of DNA. Normal individuals have between
10 and 100 of these repeats whereas
those with FSH have less that nine. In
general, the fewer the number of repeats,
the more severe the condition.

I have just 2 repeats. As it was explained to me – I'm a sucker for a metaphor – imagine a train. You, dear reader, are like one of those trains you see in movies set in the Mid-West of America, a seemingly endless string of carriages, wagons and boxcars trundling through the prairie. I on the other hand am the equivalent of Thomas the tank engine pulling Annie and Clarabell along his branch line. In short, I've been short changed by the Fat Controller.

The degree of muscle weakness varies
greatly from person to person - 10 to
20% of people eventually require a
wheelchair while up to 30% can remain unaware
of symptoms into old age. The
majority of people affected by FSH though will
present symptoms somewhere in
between these two points.

So on a scale of severity (where 1 is the most severe and 10 is where you are still skipping in your 90s) 1 come in at about 0.5. I tell you this not because I crave sympathy, I'm far too brave and uncomplaining for that, but to set myself in some kind of context for you. My experience of the condition is that it deteriorates in steps. You go along for a period of time with nothing much changing and then you have a brief period of fairly rapid deterioration before things level out again. At the moment I'm going through one of those stages of deterioration which is one of the reasons for this blog, to help me keep track of what's going on.

This week has seen a particularly significant marker for me. For the first time l needed to be hoisted off the loo. I got on the blooming thing but it took so long and so much effort that I simply couldn't get off it. Faced with being stuck 'from Monday to Saturday` I had to consent to being hoisted. So, humming 'He Flies Through the Air with the Greatest of Ease` I was lifted high and swung around towards a new stage in my life.

See you next time.

The wonder of Walfotd

I wish I lived in Walford. Aside from the mix of colourful characters with colourful family lives and sociopathic neighbours, I want the wheelchair the Branning kid has. I only follow EastEnders so I don't know if Coronation Street and Emmerdale are awash with disabled characters. Maybe the sets are just like a Mobility Roadshow. with wheelchairs whizzing all over the place. All I do know is that wheelchairs and the disabled generally are peculiarly absent in and around the Square. There's Janet, of course, the child with Downs Syndrome, but I understand the character Honey, her mother, is leaving the show this summer and presumably will take her daughter with her. Besides, Janet is rarely seen out and even though she is under Two she seems to be able to look after herself whilst Billy's selling fruit and veg and Honey's doing service washes in the laundrette or both of them are socializing in the 'Vic.

Just recently we've had a few appearances of 'Hevver`s fearsome mother who uses a mobility scooter in much the same way as a ram raider goes shopping. She's not exactly disabled – unless you count malevolence as a disability.

And so at last along comes a bona-fide disabled character, Penny Branning, daughter of Jack, who is paralysed after a car accident. She has an amazing wheelchair. It apparently levitates down the steps of her father's flat and up the flight to her aunts. Either that or she has a team of engineers building ramps wherever she goes. Unfortunately it must be the most uncomfortable chair on the market.. I'm no expert (well I am actually) but those armrests look awfully high to me. How does the poor girl wheel herself? And her dads flat looks pretty small – does it have space for an adapted bathroom? What about Tanya's house. I've seen no evidence of a downstairs toilet. These things worry me. I think the problem is that the actress Mia McKenna Bruce is not actually paralysed, or indeed disabled in any way. I don't hold that against her you understand but it does mean that the producers don't have to think about the reality of the situation. Oh yes, and how many dropped curbs have you seen on Albert Square?

I suppose its no worse than Neighbours. Admittedly I haven't watched it since kylie and Jason got married but I seem to remember various characters going blind or being paralysed. in sundry accidents; milking the story line and then either going off for rehabilitation or more frequently benefiting from a miracle cure. And if I here one more character say they'd rather die than be in a wheelchair for the rest of their life...

Oh well, until next time, good bye.

A Marathon Day (Part Two)

Watching Polly disappear off over Tower Bridge was strangely emotional. Thousands of people lined the route shouting encouragement, blowing whistles and banging inflatable cheer sticks together. I began to appreciate the scale of the event, more than 34,000 people running, the vast majority raising money for causes close to their hearts. People had died running this race in the past. And there was Polly right in the heart of one of the greatest sporting events on the planet, running in the same race as Olympians, celebrities and people dressed as rhinoceroses, camels and a McCain`s oven chip. How could you not be proud?


Paul, Darren and I set off for London Bridge station again. The route took us past the London Assembly, the modern rounded glass building on Queens Walk. To my surprise it was open and since the Tower House Bar hadn't had an accessible toilet I thought that we should avail ourselves of the facilities that my tax was paying for. I assumed that the building would be wheelchair friendly and as it turned out it was. First we had to negotiate an airport style security check. I was waved through with barely a cursory glance whilst Paul and Darien were subjected to everything short of a full body cavity search. (Note to terrorists - if you want to blow up Ken or Boris find a suicidal wheelchair user.) So as I said, very wheelchair friendly.

The London Assembly Building is architecturally quite stunning, a distinctive glass globe. A vast atrium makes you think the structure is hollow. A ramp spirals the edge giving access to all ten floors or you can take a lift to the viewing gallery. A platform circles the outside of the top of the building which offers views of the river and especially Tower Bridge. There are even telescopes for those who can stand up to use them. And, of course, it has accessible loos.

On our way to London Bridge station we were caught in one of those April showers Chaucer mentioned. The kind where the clouds do away with individual rain drops and settle for emptying buckets directly on to peoples heads. We entered the station dripping and headed for the lift but were intercepted by the duty station manager. He asked if we were heading for Westminster. We were, the plan was to head for Parliament Square via the Jubilee Line and to catch Polly and her friend Anna as they reached the final stretch. He told us that Westminster station was closed west bound and wouldn't be open for 50 minutes or so due to over crowding. He told us to wait on the platform and he'd make an announcement when it opened again. So we descended in the bolshy lift again, careful not to block the doors, and waited as we watched jam-packed trains come and go. Eventually an announcement came over the tannoy saying that if the gentleman in the wheelchair would return to the ticket hall they would arrange a taxi for him. Paul, Darren and I looked at each other, this was not the level of customer service one had come to expect from London Underground. We got back in to the lift and stood well clear of the doors and made our way back to the ticket hall where we waited another 20 minutes before being told that no taxi would go near Westminster for 3 hours because of the marathon. It was then suggested that we go to the station beyond Westminster and walk back to Parliament Square. Okay, so down we went again, standing well clear of the doors, and struggled on to the next train that came along. We slowed tantalizingly as we approached Westminster station before speeding off to the frustration of our fellow passengers. We exited the train at Green Park and wandered around hopefully looking for a non-existent lift. You will not be surprised to learn at this stage that Green Park station is not wheelchair accessible. Now what?

We heaved the chair back on to an east bound train intending to return to London Bridge and seek out the station manager to thank him for his helpfulness but as luck would have it Westminster east bound was open. You have to take 3 separate lifts to get out of that station. It took over quarter of an hour before we joined the crowds gathered to watch the end of the race. The journey from the London Assembly had taken more than an hour and a half and I was worried that I'd missed Polly and Anna. Finding a vantage point to watch from was quite difficult. We headed for the finish line but were thwarted by a flight of steps. A text informed me a friend had seen Polly at the 23 mile mark more than half an hour ago. With one eye on my battery gage I headed back to the square and waited anxiously as Tarzan, a man in a kilt and the camel ran by. Some joker was shouting at the runners to keep going, they were nearly half way. If any of them had had the energy left they would have run him to ground and left Nike treadmarks all over his face. And then suddenly there she was, walk jogging along with Anna by her side. We yelled her name and miraculously above the din she heard us. I don't mind admitting I had a tear in my eye as she raised her arm to wave at me. I watched with what would have been a huge grin on my face had I had the facial muscles to do so, and saw her disappear off around the corner in to the Mall and the final 385 yards. Go Polly, go!

Next time - The long journey home.

Up and at 'em

Let me tell you about my morning. At about 7.00am one or other of the children comes in to demand breakfast and I become aware of a pain in my hip. I've been lying on my right side all night and perhaps there is a crease in the sheet. Now I am aware of the pain I can't ignore it. The painkillers I've taken the night before have long since worn off and it feels as if the hip is burning. I try to move but the air mattress absorbs my efforts and if anything the pain is increasing. I finally have to ask Polly to help me, which is something I hate to do. She tugs and pulls at the sheet but can't un-crease it so I pretend it has helped and let her get on with seeing to the boys. The next two hours are anything but relaxing as I wait for the carers to arrive at 9.00am.

Jerry and Anna sign in and tootle about for a bit. Eventually they come and start the process of getting me up. First the duvet is removed and then the electric bed is tilted. Then Anna lifts and swings my legs out of the bed. The head end is then raised and Jerry sits me upright. My shoes are placed on my feet so I can grip the floor to balance and the ventilator is unstrapped and the plaster protecting my nose from the pressure mask is removed. I take a sip of water through a straw and begin to feel the burning in my hip ease. Jerry helps me move my leg in to position and Anna manoeuvres the electric wheelchair so that my knee is pushed along the side of the bed. The bed is raised and I do a controlled sideways fall in to the chair. Jerry crosses my legs at the ankle to stop me running over them and I make my way to the bathroom.

The transfer to the toilet takes about five minutes. I usually manage on my own but this morning I need Jerry to place my hand on the handrail. I make the transfer and relax a few moments. A couple of minutes later I call for Anna or Jerry to come. Jerry responds and places a glide sheet on the chair and then leaves again. At this point S, the little one, barges in and demands the potty.I start the transfer back. The process usually another five or six minutes but this morning I get stuck as I have been doing so more frequently recently and need to call for help. Jerry and Anna help me brace my arm on the chairs armrest and with a grating twist of my shoulder I slide uncomfortably on to the seat just enough to balance. Jerry and Anna leave me to cautiously negotiate my way to the handrail where I can heave myself fully on to the chair.

They wash and shave me and then we make our way back to the bedroom. Getting dressed takes several more minutes but is done with practised ease. Getting my trousers on is the only unorthodox handling, a procedure that involves tipping me bodily forward on to the bed head first and whipping them up before I fall back down. Once dressed I make my way to the living room for breakfast. Now I can start my day. Polly, of course, has already been going for hours.

All the best and 'bye for now.