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.
Sunday, 21 June 2009
Monday, 15 June 2009
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.
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.
Thursday, 11 June 2009
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.
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.
Friday, 5 June 2009
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.
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.
Tuesday, 2 June 2009
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.
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.
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