Wednesday, May 12th 2010

More training for the girls

Time for some more physiotherapy training! Recent sessions have concentrated on passive movements of the upper limbs but we have now reached a point where we need to start looking at lower limb passive movements. Lying in one position on the bed for 10 hours each night hardly able to move means that by morning when my carer arrives to get me up my legs have become very stiff. So I contacted Margaret, my Community Physiotherapist, to ask her if she could drop by and demonstrate some techniques that my carers could use in the morning to help loosen up my stiff legs before attempting to stand up and walk to the bathroom. The amount of time that I can weight bear is already down to just a few minutes so to minimise the chances of me falling I need to ensure that my legs are working properly.

So at lunchtime today my carers started to turn up at the door followed shortly afterwards by Margaret who had brought a surprise guest who I’ve not seen in a while; Chris, my OT from the PCT. She’d joined Margaret to take a look at the problems I was facing in my attempts to stand up. Because they didn’t want to tire me out I was left to wait in my study whilst my care team and Margaret adjourned to my bedroom where Margaret, using a member of my team lying on the bed, demonstrated the passive leg movements. Back in the study and Margaret used me to demonstrate the passive arm movements for the benefit of those who had not received training before.

Margaret and Chris also took us through the techniques of using a lifting belt. This is basically something that is worn around the waist and is fitted with a series of handholds going all the way around. The idea is that it makes it easier and safer for a carer to assist in helping someone to stand up. I must admit that over the last week or so in particular my strength has weakened to the point where I am finding it increasingly difficult, even with assistance, to launch myself into an upright and standing position. If I can’t generate enough momentum by rocking backwards and forwards prior to launching myself off the seat then I am just as likely to fall back on the chair. The lifting belt allows for a wider choice of positions to hold me, and indeed to guide me downwards should I fail to stand up. Ann and I gave it a try whilst Margaret was on hand to supervise. We actually failed on the first attempt, probably because I was feeling quite weak today but we managed it on our second attempt. I’m not sure how effective this would be if my legs were to buckle at the knees but at least handling someone from the waist puts less stress on them than say being lifted from the arm joints. Well, at least now we have another piece of kit that just may prolong my ability to stand a little while longer although the number of recent attempts to stand (and fail) is steadily increasing so I fear this last shred of independence is on borrowed time…

… Spoke to soon! Late this afternoon I took a fall onto the carpet in my study when I tried to stand up with the help of my carer. Unfortunately my legs completely buckled and I fell down onto my knees trapping my legs beneath me which hurt more than the actual fall. Fortunately my carer was skilled and experienced enough to be able to get me upright again although I was rather shaken by the experience. Nevertheless once I was standing up I gingerly walked to the bathroom but I breathed a big sigh of relief when I made it back to my study chair and was able to sit down again. This standing and walking business is getting really scary. The fall was reported to my agency and a request was made to have a second carer assist me to bed this evening but in the end we made do with just the one because the second one was running terribly late and I was tired and wanted to go to bed. On this occasion I managed to conquer my fear of falling and made the attempt to stand up with just one carer. Sometimes I find that the only way to conquer a fear is to face it head on. And this is what I did on a couple of occasions tonight. Having said that I’m also acutely aware of how painful head injuries are having already suffered two. Anyway, I made it through another day and I was so grateful to be able to lie in bed and not have to combat gravity. But for a while I lay there wondering how long would it really be before I needed double-ups at key times of the day?

Today was also a fine opportunity to (at last) get some pictures of two of the healthcare professionals who have been supporting me since shortly after my diagnosis. This is something you may remember me mentioning a little while ago when I marked the occasion of my blog’s second anniversary, and how I regretted not having more pictures of all the kind people who were looking after me. Today I was able to redress that shortcoming a little. I had also intended to get some pictures of the girls themselves but unfortunately time was against us on this occasion and they all had places to be. But stay tuned because the girls are planning another jailbreak soon so hopefully we’ll get some pictures then. In the meantime here’s a couple of pictures of Margaret and Chris, one under natural light and one with flash. Thanks this time go to Alli for the camerawork.

With Margaret (in white) and Chris

With Margaret (in white) and Chris


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Saturday, January 2nd 2010

Slight change of format for the New Year. From now on I’ll be posting the calendar entries as near to the time they occurred as possible rather than waiting up to a month. Scattered in amongst these entries will be the special topics. Let’s see how this flies.

An afternoon at the cinema

Avatar, the film that I have been eagerly awaiting for all last year finally hit the cinemas shortly before Christmas. My brother Jason very kindly took me to see it this afternoon at my local Odeon complex. Before disability appeared on my radar I had a preference for the Vue Cinema in town as it offered larger screens and a superior viewing experience. Unfortunately though it’s not the best place to go if you’re wheelchair bound as the disabled seating is right at the front of the screen which forces you to crane your head back as if staring up at the side of a skyscraper from street level. In contrast to this wheelchair spaces are allocated at the rear of the Odeon near the doors so you benefit from both a good viewing position and easy access.

Avatar had been in the making for a number of years and was generating a lot of hype because of its revolutionary film production methods. With James Cameron (the director of Aliens, The Abyss, Terminator, Titanic et al), as the creative force behind the movie, expectations were high. I was certainly curious to see how realistic and believable a whole computer-generated world would look. I was not disappointed! Avatar is simply stunning to look at. There is no doubt at all that it represents a major leap forward in how a movie can be portrayed. I sat there enthralled admiring the level of detail that had gone into the making of the movie. It’s hard to believe that the only real elements are the human actors.

I’m not going to spoil the whole story for anybody who has yet to see it but it is basically about a paraplegic marine who travels to the world of Pandora to negotiate (via a remote-controlled Avatar body of a native) a peaceful resettlement of its indigenous population who are located directly above a vast deposit of a precious mineral which is highly valued back on Earth. At its heart the story is about the strong preying on the weak and the greed of large corporations. But it is also a love story about an outsider finding a new way of life. I suppose on that level comparisons could be made with films such as Dances with Wolves. In fact some of the critics have cruelly dubbed it ‘Dances with Smurfs’ (because of the skin colour of the natives). Anyway, highly recommended whichever version you might see. Yes versions because this is one of those films you can either watch in traditional 2-D, digital 3-D or 3-D IMAX. I saw it in 2-D as wearing one pair of glasses was enough to deal with without worrying about 3-D glasses which I thought might cause me a problem on such a long film. Mind you having just said that I would imagine the film to be absolutely stunning on a 3-D IMAX screen.

On my knees

After the film finished we left the cinema and headed back to the car which was parked just outside in the disabled parking area. Unfortunately I was brought quite literally back to Earth with a bump. After sitting in my wheelchair for a few hours my legs had grown quite weak (in a similar fashion to when I had spent a day in London back in August). So when I tried to stand up (with the help of my brother) to walk the few steps to the passenger seat my legs simply buckled and gave way and I found myself on my knees on the roadside. My poor brother had to somehow struggle to keep me upright and from falling over face down whilst at the same time half carrying me towards the car. There’s not much of me these days but even so I’m still heavy enough if my entire weight has to be supported by somebody else. Being carried in this fashion I felt completely helpless, like nothing more than a dead weight. Both my arms and my legs had no energy in them and my head was drooping forward. Frustratingly there was no one around to help us but eventually my brother managed to get me bundled into the car.

Once we arrived back home I had to wait patiently in the car whilst my brother went searching for a neighbour who could help him get me indoors. With two pair of hands I was lifted out of the car, loaded into the wheelchair, wheeled into the house, lifted onto the stairlift, taken upstairs, and placed in my study. By this time the call of nature beckoned so I had to endure a similar embarrassing situation to the one I did back in September when I took a fall, i.e. being held up from behind by my neighbour whilst I stood in front of the loo with my brother assisting with my clothes. This disease destroys all your dignity!

I stayed in my study all evening too frightened to move and knowing full well that at least for the time being my legs had given up the ability to bear my weight. Francesca arrived to do my evening meal but all I could do was pick at it. My appetite had deserted me. All I could think about where the implications if my leg strength didn’t return. I felt frightened to drink too much in case I needed to visit the loo and couldn’t. What a situation to get into!

My brother returned late that evening to assist Francesca get me into bed. With my legs so unresponsive it was very difficult for the pair of them to lift me out of my study chair and onto a glide about commode which was used to transport me from my study into my bedroom. From there it was a transfer to the edge of the bed where I was undressed and put to bed. The commode was left in a ready state adjacent to the side of the bed in case I needed it in the night.

On my own again with the lights out and lying paralysed and helpless in bed I pondered what tomorrow would bring. The question is have I turned a corner or is this just a blip? Will I regain my strength or is life about to get a whole lot more difficult? The last time my leg strength had deserted me was back in September in the A&E department of our local hospital. But that was months ago and in that time my legs have continued to waste so it may not be so easy to recover the lost strength. But even if I do I know full well that it is only a matter of time before I lose the ability to see the world when standing up. So depressing.

Before I sign off today I would just like to say a big thank you Jason for taking me to the cinema. Really enjoyed the movie, one of the best I’ve seen in a long time – and the first I’ve ever seen in a wheelchair. Thanks for everything you did to make sure I got home safely. After today’s episode I’m sure you might disagree with that old Hollies song ‘He ain’t heavy he’s my brother’ smile_regular. And thank you Francesca for everything you did today to try and lift my spirits when I was feeling a bit down and fearful of the future.

Thinking about today’s movie, I could do with an Avatar body myself right about now smile_regular.


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Heading for Autumn (September) – part 3

Calendar entries highlighted in yellow

14th September 2009 – Training day

Karen from AbilityNet phoned this afternoon to begin my remote access training for the speech recognition software they recently supplied me with. As part of the support package I am entitled to 6 one-hour lessons. I had the choice of either having somebody call at my house to deliver the training or to do it over the phone with my computer logged into their system so they could watch what I was doing. I chose the remote training partly because I was being told that it would take longer to arrange for somebody to come out to the house and I was keen to make a start as soon as possible. I’ve actually been playing around with the software on my own for some weeks now so have managed to work out some of the basics by myself but I’d be the first to admit that I’m only using a small amount of its features; just enough really to write this blog and to send e-mails.

We began this first lesson with me explaining some of the problems I’ve been experiencing getting the Dragon NaturallySpeaking software to work with a webmail account. For some reason it just does not seem to be able to work inside the mail application, so as a workaround I’ve been writing all my e-mails within Microsoft Word and then copying and pasting them into the webmail application. My tutor and I played around for quite a while trying different things but all to no avail so she’s going to speak to the software publishers. One option I was given was to use a desktop e-mail client such as Windows Mail or Outlook Express which would work much better with the speech recognition software. The problem with this however is that all my e-mails and contacts are then stored locally on my own PC’s hard disk. There are several disadvantages to this; the first is that I then need to remember to back up these files regularly in case of data corruption, hard disk failure or even theft. The second is that I could no longer access my mail or contact details on another computer which could be a problem if I were ever to leave the house for any length of time.

Leaving webmail aside (because we were spending too much time on it and not getting anywhere) we turned our attention to accessing by voice the various options available in Microsoft Word 2007. Here we fared a lot better and I was able to see that once I understood the various voice commands I could create documents with a variety of formatting options. I’ll play around with this bit over the coming week ahead of my next lesson and make a note of any questions I have. I think my biggest concern at the moment would be how effective the software is in being able to control web-based applications. This seems to be the way things are developing so there is definitely a need for people in a similar situation to myself to be able to control these applications by voice. It will be interesting to see what the software publishers have to say.

17th September 2009 – Shadowing / A meeting with Lara / Update on house extension

I woke up this morning to find two women smiling down at me! Not a bad way to wake up and start the day I thought :-). Kim had come along to shadow Ann so she could familiarise herself with my morning routine. At the moment I don’t really have an ideal backup to Ann so we are trying to get somebody else that I feel comfortable with to do my personal care when Ann is on holiday. Kim would be ideal as we already get on well together despite only knowing each other a short time, plus she has plenty of experience. I must say I felt even more pampered than usual this morning having two lovely ladies attend to my needs. I thought to myself I could really get used to this! It was also the first time that they had met each other and I found it encouraging that they both seemed to like each other and worked well together – something they might need to do later on when lifting and handling me will require a double up i.e. two carers.

Lara called round this afternoon; that’s my palliative care doctor, not the explorer on the computer game series! 🙂 Just thought I’d make that clear. We had quite a long meeting today as we’ve not seen each other for some time and covered a whole range of topics including my respiratory tests, planned adaptations to the house, physical and mental well-being, and the current state of my care package.

Looks like things are starting to move again on the proposed extension to the house. In Touch, the company overseeing the project are now going to prepare the drawings for planning application. We’ve settled on building an extension on the side of the house as opposed to the rear of the house. In studying both sets of drawings and weighing up the pros and cons I chose this option for the following reasons:

  • It will make use of dead ground at the side of the house that I cannot see anyway when sitting in the living room
  • Having an extension running the length of the house should provide some additional insulation for my living room which gets cold in the winter as I am on a corner
  • It will preserve my back garden and I will still have something nice to look out at when sitting at the dining table near the patio doors
  • My dining room will continue to receive plenty of light as there will not be an extension blocking off the light from the patio doors
  • It will avoid the problems of having an inspection hatch in the wet room for the sewer which runs through my back garden (there is a drain cover next to my patio)

The only thing that concerns me is that I’m being told that it may take a bit longer to get the planning approval. Up till now I’ve been told that it can take up to 12 weeks to gain planning approval so I wonder how much longer it will take. Either way it looks like being a winter construction project with completion due in the early spring. I’ll breathe a sigh of relief when it’s complete as I’ll finally have a downstairs bedroom and bathroom so could effectively live on the ground floor like in a bungalow. The upstairs rooms would then be available for guests or carers.

18th September 2009 – An afternoon at Milestones

Sometimes we can travel far and wide in search of interesting places to visit and yet miss those rights on our own doorstep. Such is the case with the Milestones Museum, Hampshire’s living history museum which was where Kim and I spent the best part of four hours of my social time this afternoon. Kim had suggested yesterday I might like to visit Virginia Water and I jumped at the chance, but when I woke up this morning it was a very dull and overcast day which showed no signs of improving by the time Kim arrived just after midday. So we quickly altered our plans to an indoor venue and Milestones immediately sprang to mind as it had been somewhere that I had been saying to myself ‘I must pay it a visit’ ever since it opened around 2000.

The museum is housed in a modern, spacious and purpose-built building on the Basingstoke Leisure Park. From the outside it can look a bit deceptive but inside the whole display area is sunk below ground level and it’s surprising how much they have managed to pack in. It is laid out in a series of cobbled streets, tramways, full scale buildings and vintage vehicles from the Victorian age onwards. In fact it’s a little bit like Flambards down in Cornwall. The focus of the museum is to show how people lived and worked in the Hampshire area over the past 200 years or so.

Kim and I were each given audio handsets and a map of the museum. The idea of course is to key in the number adjacent to an exhibit and then listen to the commentary. I of course couldn’t do that because my arms don’t work so Kim not only had to push me around in my wheelchair, but also had to fiddle around with the two handsets which was quite a juggling act at times. Our tour of the museum started in a mock-up of a Taskers Ironworks from the 18th century where a film was projected onto a screen depicting an actor in a period costume telling the story of how they made steam engines. From here we made our way to a sawmill where a (non-working) stationary steam engine powered various tools via a series of pulleys and drive belts.

The main street, which was cobbled, played havoc with the wheelchair. I really did get shaken to bits and it can’t have been easy for Kim either. To make matters worse (or more authentic if you wish to look at it that way) the street was inlaid with tram tracks so those with mobility problems need to take special care. I didn’t mind though as it all added to the atmosphere. The streets were lined with the typical sort of shops that you might find in any town at the end of the 19th or beginning of the 20th century such as a greengrocers, a tobacconists and even a pub which apparently serves real ale. We followed the cobbled street past a tram car, a gypsy caravan and an assortment of steam engines to a railway station ticket office inside which was a beautiful replica model railway of Winchester Station. Opposite the ticket office a coal wagon sitting in a siding complete with authentic looking weeds growing between the sleepers, was being unloaded and bagged up and placed on the back of a horse and cart ready for delivery.

Passing through a tunnel ‘transports’ the visitor to the 1930s or 40s. Again there is a selection of shops including a music shop where you can listen to popular tunes of the day on old 1930s gramophone players. Just outside there’s a lovely fire engine and one of the old familiar but fast disappearing red telephone boxes with a very old Bakelite phone. Across the street there is a little green with a bandstand and adjacent to this are a series of authentic posters one of which I couldn’t resist having my picture taken next to. It had nothing to do with the fact that she was a pretty girl :-).

The final part of the museum tells the story of Thorneycroft, a major employer of the area in days gone by. There’s a small selection of their vehicles on display too. In addition to the main exhibits were various displays and set pieces. One for instance shows home life through the decades through a series of decorated rooms such as a kitchen from the 1960s and a living room from the 1970s. There was even an old Commodore PET computer on display, already looking antiquated in these fast changing times of ours. What really caught my eye was a fascinating collection of old cameras dating from way way back. Sitting on the shelf was an old Bakelite Kodak Cresta just like the one my mum passed on to me when I was a child, and close by was a pack of expendable flashbulbs the size of hen’s eggs. Further along the display and moving forward in time I could see examples of cameras that in their day I had dreamed of owning and in some cases had.

Time passed quickly (no pun intended) whilst we were in the museum and I could easily have spent a few hours longer enjoying everything that was on offer (I have a fondness for history) but already the afternoon was drawing to a close so we made our way back up to ground level for a coffee and biscuits in the restaurant overlooking the cobbled streets and houses. It had been a really enjoyable afternoon and I would like to say a big thank you to Kim for taking me and looking after me so well and for taking the photos. I’m already looking forward to our next outing together.

Interior view of the Milestones Museum

At the Milestones Museum

Ahh here we are in the 60s kitchen and you can see behind me one of my carers preparing my evening meal. She's not as good as Ann, Francesca or Kim though. To be honest she's a bit of a dummy! The kid doesn't say much either 🙂


With Kim, my lovely new carer

This one is interesting. I found it in the museum' s archives proving that at some point in the future I must 'borrow' that DeLorean from Beaulieu and travel back to 1895 where presumably I have met Kim's great-great-grandmother! There is an uncanny resemblance between them don't you think? 🙂

19-20th September 2009 – Treats / A surprise invite

I had a couple of food treats this weekend, simple things to be sure but lovely when you haven’t had them for a long time. Earlier in the week Francesca was asking me what foods did I miss and I told her how much I used to enjoy crispy baguette bread which I used to buy every weekend and stuff with various fillings. Unfortunately as my strength faded I lost the ability to use a bread knife to cut it. Eventually my hands became so weak I could not even hold the bread. So it was a real treat on Saturday morning when Francesca was making my breakfast that she surprised me with a delicious crispy bacon and fried egg baguette – delicious! I still couldn’t hold it of course so Francesca did the honours whilst I took bites out of it like a hungry alligator!

On Sunday I had another food treat for breakfast when Kim, who was standing in for Francesca, cooked me a delicious bacon and cheese omelette. It brought back pleasant memories from a few months ago when Alison used to make them for me on a regular basis. But what really made them special was the fact that Allison kept chickens and would often bring over a bucket of fresh eggs. Omelettes made from these eggs were both delicious and bright yellow and a world away from the eggs bought in a supermarket.

I had another surprise on Sunday when Val (my friend from Basingstoke neighbour care) phoned to ask if I would like to join her and Jim on a trip out into the countryside that afternoon. They were off to visit a private garden just west of Stockbridge near Broughton that was being opened to the public for the day in aid of charity. I jumped at the chance, both eager to get out of the house for some fresh air and also having a chance to socialise with friends. To be honest the gardens were nothing outstanding and it looked like most of the flowers had peaked some time ago, but it was still a pleasant break from the monotonous routine of daily life and be in the company of good friends.

With Val at a private garden open day

With Jim at a private garden open day

With Val at a private garden open day

With Jim at a private garden open day

So all in all not a bad weekend. I’d like to thank Francesca and Kim for the delicious breakfast treats they cooked me, and a big thank you to Jim and Val for the kind invite to take me out and for also having the patience to learn how to use my camera.

22nd September 2009 – Further training

Karen from AbilityNet phoned this afternoon to deliver my second training session on the Dragon NaturallySpeaking speech recognition software. Over the past week I’d been playing around in Microsoft Word 2007 familiarising myself with some of the things that we’d discussed in the first lesson such as accessing various tools on the ribbon bar. I’d also been making a mental note of things that I wanted to touch on this week such as problems with certain programs coexisting with Dragon NaturallySpeaking. I had found for instance I could not load Adobe Photoshop Elements 5 into memory if the speech recognition software was already loaded. I had also discovered that I could not access the various menu options, toolbar buttons or dialogue boxes for this program either. After spending considerable time looking at the problem Karen had to concede defeat as well so it looks like I will be relying on the laptop’s trackpad and my foot controls when editing digital photos. I was kind of hoping that I might be able to use my voice to navigate around the menus and to specify numeric values when applying a tool or effect to the image.

We also looked at basic web navigation this afternoon and here the programme seemed to fare a little bit better in terms of accessing Web addresses and hyperlinks. However the program struggled to access my website bookmarks in the favourites menu called up from the toolbar and required some rearranging of the screen furniture to get this to work. Another area where the program struggled was accessing my online calendar which I use for organising all of my medical appointments and meetings.

At the moment I’m left with the feeling that outside of its comfort zone of dictating letters and e-mails the program is of limited use. I’m really disappointed in its poor control over web-based applications. To me this seems extremely short sighted as more and more applications are becoming web-based and this is an area which I feel software developers need to concentrate on. So for the foreseeable future it looks like I’ll be using a hybrid selection of input devices to enable me to continue working on a computer. I’m still entitled to a few more remote training sessions but have not scheduled another one until the week after next so that I have time to digest what I have learnt.

25th September 2009 – A night in A&E

It had to happen sooner or later, the writing has been on the wall for some time now and I’ve been saying to people that using the stairs was an accident waiting to happen because of the weakness in my legs and the unpredictable nature of keeping myself balanced. Descending the stairs has become traumatic, and with the (currently useless) stairlift track occupying the widest part of each stair tread, I have to be extra vigilant. For this reason I try to minimise the amount of times I use the stairs each day (to use the bathroom) by regulating my liquid intake to certain times of the day. But inevitably there are occasions when I simply have to use the stairs outside of the times when there are carers here. This afternoon at just after 4 PM was one such occasion. As I stepped off the landing to begin my descent I suddenly lost confidence in my ability to keep myself balanced as it started to feel I was going to fall forward. I quickly stepped backwards onto the safety of the landing but I was already too late and continued to lose my balance only this time I fell backwards rapidly and smashed my head into the panelled door of my study before falling in a crumpled heap on the carpet. I didn’t lose consciousness but really did hit the door hard as it made a terrific noise. Lying helpless on the floor all I could do was twitch my arms, but as I moved my head from side to side I could hear the carpet squelch as if I was running my head over a wet sponge. I realised with a sickening feeling that I had cut my head open. The question was how serious? Unable to move and inspect it myself all I could do was lie there helpless and try not to move my head too much for fear of making it worse.

Frustratingly I had no idea who was going to do my care that evening as despite the lateness of the hour the care agency had not yet allocated somebody to do it and were struggling to find someone. I lay there wondering who it would be and how competent they would be. If it was somebody new or with little experience would they be intelligent enough to investigate when I didn’t answer the door or would they just assume I was not home? The thought of lying on the floor all night with my head bleeding, was to say the least rather frightening. When you have nothing more to do than to look up the ceiling time passes incredibly slowly and I became increasingly worried as the light started to fade and there was still no sign of a carer. Eventually I heard a car pull up on my driveway and the familiar jingle jangle of Ann’s bunch of keys. I breathed a sigh of relief. The bell rang and all I could do was gaze helplessly at the intercom unit just a few feet away on my desk. I shouted as loud as I could ‘help me’ but there was no response as she couldn’t hear me. Fortunately Ann is an experienced carer and used her own key to gain access. I called out to warn her that I had taken a fall so that it was not such a shock when she found me sprawled out on the blood-soaked carpet. She immediately contacted the emergency services and within a few minutes the first responders arrived to assess the situation. The guy who inspected my wound said I had lacerated the back of my head and it would need stitches or gluing. He said that he would try to keep me out of A&E by trying to arrange for somebody to come to my home but unfortunately there was nobody available. A call was put out for an ambulance. In the meantime the first responders got me to my (unsteady) feet and helped me to the bathroom as by this time I was really desperate to use the loo. It was quite an experience I can tell you standing at the loo being held up and supported from behind by someone whilst Ann fumbled with my clothing, all the time being watched by another woman who had turned up to assist. Under these circumstances it is hard to ‘go’.

The next hurdle was getting me down the stairs. Fortunately I have a stairlift and although it’s not much use by myself is usable if there are a couple of people around to assist me into it and control it. Within a couple of minutes of placing the call an ambulance arrived outside the door and the paramedics took over. They supported me under my arms and helped me walk gingerly to the front door where I was loaded onto a stretcher and then placed in the back of the ambulance and taken to the A&E Department of the Basingstoke Hospital. So far everything had worked quickly and smoothly but once we were in the A&E department things ground to a halt. It was Friday night and the department was very busy. They found a cubicle for me and transferred me to a bed. Ann, bless her, had followed us up in her car and sat by my bed for hours holding my hand and offering comfort. She also very kindly contacted my brother to let him know the situation and advised the care agency of what had happened to me.

Hours passed with no progress. My right shoulder blade was starting to feel very uncomfortable and a little bit painful so we asked the nurse for some pillows to rest it on. I took the opportunity to ask where we were in the queue and explained my situation. She went away to find out and came back saying that she had arranged to have me looked at next. I was then wheeled into another room where a Oriental doctor took a look at my laceration after cleaning the wound. My eyes bulged wide when I saw him take out a staple gun! I became rather worried at this point as I knew from painful previous experience how much it hurt just getting a staple in your finger. Goodness knows what it would feel like having them in your head. I expressed my concern to him but he told me that if he anaesthetised that part of my head it would still require several needles which would hurt about the same so I might just as well have the staples straight away – gulp! Well it did hurt but surprisingly not as much as I had imagined. He put three staples in my head.

Whilst we were seeing the doctor, Di, a member from the All Care management team dropped in on her way home from working late at the office to see how I was and what could be done to help me. She suggested that because I lived alone that it would be a good idea that I didn’t go home this evening as there would be nobody there to care for me if a problem arose. As it was close to midnight and I was still feeling very weak I readily accepted the suggestion. Di negotiated with the hospital staff for me to have a bed that night then she and Ann went home whilst I lay on the bed waiting for them to organise things. Eventually at around 12:45 AM I was wheeled through the corridors into the short stay ward where I was given my own room. After taking my blood pressure and temperature and asking me what I wanted for breakfast I was finally able to get some much needed sleep.

26th September 2009 – A day in A&E

Trying to get to sleep in unfamiliar surroundings can sometimes be difficult and so it was with me that night as the various noises of staff going about their business, doors slamming and plumbing & heating systems switching on and off intruded into my sleep. I was finding it very difficult to get comfortable; my right shoulder was really starting to ache and I was suffering with painful cramp in the toes of both feet. So when the night nurse dropped by to see how I was I asked her for some painkillers. For a while it did help and I was able to get some light sleep. I woke up at 7 AM to find a nurse in my room wanting to take my blood pressure and temperature again. At 8 AM a (student) nurse came in and introduced herself as Helen and said that she was there to help feed me. I had only taken a few mouthfuls of cereal when the familiar and very welcome face of Francesca appeared. She had just been notified of my situation by the care agency and had dropped everything to rush to the hospital to be with me. I was deeply touched by her concern for me and I felt so happy to see her. Francesca had not only come to pay me a visit but also to participate in my personal care and liaise with the nurse.

After breakfast a doctor came along to examine my head wound. They were ready to discharge me when Francesca voiced her concerns about sending me home so soon to an empty home. She argued that it would be better to leave it until later in the day when she would be there with me to cook my dinner. This was agreed on so for the remainder of the day I just lay on the bed and the chair adjacent to it and relaxed. After lunch my brother Jason dropped by to see how I was and to keep me company for a while and then I was alone again for what seemed like ages until my brother returned to take me home. I’d been off my feet practically an entire day so felt particularly weak in my legs and lacking in confidence to walk very far. I wasn’t going to attempt to walk all the way through the hospital anyway and was transported out to my brother’s car in a hospital wheelchair. In the meantime Francesca had gone back to my house and had cleaned the blood off the carpet, made a start on my dinner, and was ready to help assist my brother get me out of the car and safely upstairs using the stairlift.

It felt good to be home but the accident will change things forever. I no longer have the confidence to tackle the stairs using my own legs. My ability to keep myself balanced when climbing or descending steps is getting worse all the time and I just don’t want to take the risk. This time I was very fortunate because I fell backwards instead of forwards. It could easily have been so much worse had I tumbled down the stairs. The problem I have now is that I just cannot use the stairlift on my own because of the previously mentioned problems. To complicate matters further Liftech are coming in on Monday to remove the top section of track and take it away with them so that they can extend it. That means I shall be trapped upstairs until they return with the new piece. So for the next week I shall be living on the upper floor of my house where I will have access to my bedroom, bathroom and study. Just as well I don’t have any appointments that require me to leave the house.

Over the past 24 hours I’ve been fortunate to meet some really kind and caring people, the true unsung heroes of this world. I can’t possibly remember all their names but would like to thank Steve (the paramedic who took care of me in the back of the ambulance) and Helen (the student nurse who cared for me Saturday). These people work hard and tirelessly for all our benefit. Some people may knock the NHS but I for one am very grateful that we have it. All the people I dealt with were kind, caring and keen to please.

I would also like to express my gratitude to Ann and Francesca for all that they’ve done for me. They are without doubt both very good carers but this weekend their loyalty and devotion to me was amazing and reinforced my belief that I am truly lucky that I have such kind and caring people looking after me.

And finally, what about those staples in the back of my head? Well the hospital will be contacting the district nurse who will be coming out to my home around the middle of next week to remove them. I am so looking forward to that – not!

27th September 2009 – Settling in

My brother came around mid-morning and has re-situated the laptop computer and plug-in USB peripherals (Gooseneck microphone, foot switches and external speakers) so that they are now located on my desk in the study upstairs. At least now I have access to the outside world again. I am truly lost without my computer. Thank goodness then for portables and wireless Internet connections. These technologies really do make life easier for people like me. Back online I was able to start catching up on e-mails and writing some of my own to inform my healthcare professionals of my accident.

A couple of problems with being based upstairs have come to light straight away. The first is that at mealtimes there is limited legroom under my desk. So although there is room for food and drink I just cannot get close enough to the edge of the table for my arms to reach it. Consequently I will have to rely on my carers to feed me. This isn’t so bad though as I have been gradually moving in this direction for some time anyway. In fact there is a significant advantage because it saves me from having to constantly bend down towards the plate so my lower spine does not ache so much.

The other problem is that I cannot undress myself upstairs as there is nothing of suitable height for me to lean against. This will leave me with no other choice than to have my last carer of the day help undress me even though I’m not ready that early for bed. But again to be honest I was not far off this point anyway. I’ll need to discuss this soon with my care manager.

28th September 2009 – Life upstairs

And so it begins, my week of confinement to the upper floor of my house. In truth it probably won’t be so bad because most of the day I’m just sat at the computer anyway so I suppose it doesn’t really matter that much whether I do this at the dining table downstairs or in my study upstairs. It becomes a little bit more of a problem when I have appointments at the house but we’ll just have to manage.

Starting today Kim is taking over the two-hour Monday morning call from Ann, an arrangement that I think will please everyone. Ann will regain her Mondays which she only picked up as a favour to me when Alison left, Kim will benefit from more hours with my care package, and I’ll benefit by having three main carers familiar with my morning routines. And it was a nice relaxing morning too with both of us singing along and playing spot the intro to music streaming off the Internet whilst Kim busied herself around the house.

Liftech called this morning to remove the top section of the stairlift track. They have taken it away so that they can extend it. I hope to have it all back by this Friday and I have stressed the importance of this by telling them that I had an accident last Friday and that I am now confined to the upstairs.

29th September 2009 – Training for the girls… or at least some! / Another update on the house extension / Chatting to my OT

My care agency has let me down again. I had gone to all the trouble of liaising with Margaret, the community physiotherapist to have some further training for my existing carers and have some new carers trained up, and what happens? The only people that turned up were my ever loyal Ann and Francesca who had come along to learn the additional techniques I have requested for my hands which are becoming difficult to clench – the opposite to what is normally expected for people with MND. I had really hoped to be able to get some of these other people trained up so that when Ann goes on holiday soon I will have someone else who can step in. The last time I had to go all week without my passive arm movements I knew about it the following week.

I’ve been sent the elevation plans and modified floor layout of the proposed house extension. It all looks quite nice with sufficient room for my needs even with a large hospital size bed. They are ready now to submit the drawings for planning approval which I’m being told they expect to have within 8 to 10 weeks. I’ve written back granting my approval so now it is just a waiting game. Assuming all goes well we are on track for completion of the entire project by the end of winter/early spring. That’s still a long way off of course and a lot can happen to me in that time.

I had a 90 minute chat on the phone with my OT this evening bringing her up to date on events over the past few days and making further requests for equipment. For example I’ve asked for a modification to the front doorstep as it is too big a drop now. Every time I step off it onto the tarmac driveway it affects my balance and I’m in danger of toppling over. I’ve also asked her to take another look at emergency lifelines as I could surely have done with one of these last Friday instead of having to lie on a blood soaked carpet for three hours. I’ve mentioned telephones too as my cordless phone is hard to operate at times and requires me to stand up to get my arms into position as I cannot simply just reach out.

30th September 2009 – Duvet wars! / The District Nurse calls

A sure sign that my legs are getting really weak is the fact that I’m struggling now to lift a duvet cover with them whilst lying in bed. I had need early this morning to visit the bathroom so I used my legs as I always do to kick the duvet away. When I came back and fell back into bed (quite literally these days) I had a devil of a job trying to reposition the duvet so it covered me again. When I had kicked it off the bulk of it had fallen off the end of the bed and the sheer weight of that much duvet was too much for my legs to lift. So once again I rolled out of bed and tried grabbing each side of the duvet in turn with both hands and tried to give it a good tug. Unfortunately I have so little strength that I barely made an impact so went back to bed feeling resigned to the fact that I was probably going to have to spend the rest of the night with no duvet covering me and gradually getting colder. Eventually driven on by feeling cold I made another attempt at trying to pull sections of the duvet onto the bed and after much thrashing about I was successful. Of course by this time I was completely worn out and feeling very hot. In fact the last thing I wanted at that moment was a duvet covering me!

I’ve had my staples removed. The district nurse dropped in late this afternoon and pulled them out with the staple extractor I was given on Saturday. To be honest it didn’t really hurt at all. I do have a headache this afternoon but it is nothing to do with the staples. The frustrating thing is I am here upstairs alone and I cannot even get to my paracetamol which are downstairs. I’ll have to wait until Kim arrives this evening. Memo to myself: leave some paracetamol on my desk just in case!


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First tumble

Well I suppose it had to happen sooner or later but this was not how I imagined it would be or indeed this soon. But then I only have myself to blame…

I’ve been quite a keen cyclist for the past seven years. I’m not what you would call a racing or mountain bike enthusiast, just an evenings and weekends fair weather cyclist. You know, the typical office worker trying to keep the weight down and the circulation up. And I guess that is why I got into it originally – as a way to try and keep fit and to combat the effects that a fairly sedentary lifestyle can bring. The ominous spectre of middle age was looming…

But what started out as something that I felt sort of compelled to do gradually over time turned into something that I really enjoyed and would look forward to. At one point I bought a little trip computer so I could see how many miles I was clocking up each week, trip etc. In the first summer I had it I managed to clock up just over a thousand miles! Back then I seemed to be out on my bike just about every day. In the evenings after work I would change into shorts and T-shirt and play ‘beat the clock’. I used to have a 12 mile circuit that would take me around the housing estate and out into the countryside past Manydown farm to the neighbouring village of Oakley. I would constantly try to shave a few seconds off each time until it got to the point where I felt fit to collapse when I arrived home. On the occasions that I wasn’t trying to beat my own record I would adopt a more leisurely pace. There is a riding school out by Oakley and whenever I cycled through the village I would pull over and stop just past the old traditional stone church and lean over the gate to the field where the horses grazed and wait for them to walk over and say hello. Well sometimes I would be there for ages. You know what it’s like yourself; once you get chatting to a horse you just can’t get away, they just have to tell you their life story. That or complain about the ever rising price of hay :-).

At the weekends I would set off with a full bottle of water and head off towards one of the nearby towns such as Alton, Alresford or Andover. We don’t have any mountains here in Hampshire but we have plenty of hills and although it might look fairly flat on a contour map I can assure you that when you are on a bike you know about it! Each year I would try and stretch myself that much further by increasing the number of miles cycled in a day. I eventually ‘maxed out’ at 70 miles which was a full day’s cycling and left me completely exhausted by the time I crawled home that hot summer’s day. It had been the only time when my energy levels had completely collapsed at one point and I had to take a long rest before carrying on. And boy did I sleep well that night!

More recently I tended to do it purely for the pleasure of being out in the fresh air and the joy of passing through charming little villages full of thatched cottages, duck ponds and stone bridges. What a wonderful stress-free way to spend a day in relative peace and quiet away from the traffic congested ‘A’ roads. And on a summer’s day there is nothing better then to be out cycling down the country lanes with the sun on my back, wind in my hair and a big silly grin on my face as I hurtle down the hills!

So here we are in May and fast approaching June. With driving becoming a distant memory and walking rather limiting in range I was starting to get the itch to get back in the saddle. I hadn’t been cycling since last summer and I was curious to see if I could still do it. I felt fairly confident because walking wasn’t really presenting any problems and if I could start cycling then it might provide indicators of how the disease is progressing – in fact very much like I do with my walking. The indicators that I would look at most would be how my legs were performing; whether I felt weak or whether I felt that they were about to stop working altogether, my overall stamina level and also how I was breathing; whether I was struggling to breath cycling up steep inclines, or whether I just felt extremely tired at the end of a ride. So I would carefully keep a watchful eye for these early indicators so that if anything did start to develop I would be able to alert my GP.

Another reason for wanting to push myself physically is that I believe it is good to keep the limbs moving to help combat the stiffness that can set in. Sure it’s tiring but better that then have muscle tissue that has grown so stiff that moving the limb even with help becomes either difficult or painful. And hopefully by trying to keep the muscle tissue supple I will be able to keep the cramp at bay. And I suppose another very real reason for doing it is because one day I may not be able to so and I want to make the most of the here and now as some day all I’ll have will be these memories of mobility to feed off.

So a week ago today after first struggling to get the garage door open (not easy when you cannot raise your arms very high), I dusted down the frame and pumped the tyres up on my trusty Saracen Traverse. I clipped the trip computer to its cradle on the handlebars and set off. With a clear blue sky, the sun shining and a gentle breeze blowing it felt good to be back in the saddle on such a wonderful day and without a care in the world. I started singing ‘two wheels on my wagon, and I’m still rolling along…’

To be on the safe side I decided that until I felt confident and safe enough I would stay off the roads and just stick to the cycle paths that thread their way through the housing estate. All was going well until I approached the field (not far from my home) which is on a steep incline and I made a fatal mistake but one which had become intuitive to me since I started cycling. I stood up to gain extra leverage and as I did so I leaned forward to remain in an upright vertical position – BIG mistake! My centre of gravity shifted and suddenly my arms bore the full weight of my body. Immediately my arms collapsed under the load and the bike and I parted company as gravity took over. I hit the ground hard but cannot remember exactly how because it all happened so fast. The first thing I was aware of was a pain in my chest and struggling for a few seconds to breath. I had hit my chin against the pathway too and in those first few seconds I just lay there trying to collect my thoughts as all sorts of horrible scenarios flashed through my mind. Had I broken any ribs, had I punctured a lung, had I lost any teeth? I nervously ran my tongue over my teeth – everything seemed okay, nothing missing and no taste of blood. I ran my hands across my ribs but there were no sudden pains and nothing felt abnormal. I looked around for evidence of blood but there was none. So nothing immediately visible except for some grazing on both knees, hands, chin and left cheek although I still had some pain in my chest from hitting the deck so hard. Phew!

So that brought my first cycle ride of the year to a very abrupt halt. All the walking I’d been doing lately had lulled me into a false sense of security. And although it hurt quite a bit at the time I had been fortunate that I had suffered no major damage. I had managed to walk away with superficial grazing and some bruising which is now slowly fading. I had some slight pain in my chest for a couple of days perhaps from some pulled muscles but everything is gradually getting back to normal – whatever that is these days. One thing’s for certain, it sure hurts hitting the ground! As children we seem to be forever taking tumbles and yet we just seem to bounce right back as if made of rubber. But the older we get the more ‘rigid’ and frail we become. Ouch! Wouldn’t want to repeat that again! Naughty arms!

So I took a tumble and no doubt it won’t be the last. With muscle wastage comes unpredictability: hands can suddenly loose their grip, arms can fail to remain in an upright position, feet can drop causing a person to trip, and legs can suddenly fail to support, leaving a person crumbled on the floor. I think when my legs start to show signs of failing I’ll have to go round the house and bubble-wrap all the hard edges :-).

Apart from the physical hurt I’m feeling a bit down because I really had hoped that the bike would allow me to extend my travel radius and get out into the countryside a bit more, at least long enough to be able to enjoy some of the summer. I was so looking forward to it but it doesn’t look very likely now as the risks involved are too high should my weight shift suddenly in a way that I cannot compensate for quickly enough such as going down a steep hill with all my weight leaning forward. If my arms collapsed then…well it doesn’t bear thinking about. At least this time I had the sense to keep to the cycle paths. I suppose I could fit extended reach stabilisers like some bizarre form of land-based catamaran :-).

And just think, had everything gone smoothly then in a month or two I would have been publishing a blog entry called ‘saddle up!’ instead of this one. Oh well such is life…

So it looks like I’ll live to fight another day or as James Bond said in one of the recent movies ‘Die Another Day’ ;-).