Construction Tail

Are you all sitting comfortably? Good, then I shall begin. I have a tale to tell…

All was quiet in the guard room... "Hey Mr sleepyhead, it's time to get up. Come on, wakey-wakey rise and shine. You've a big day ahead... and a very important visitor!"

Oh no, it's the camp Kommandant who's turned up unannounced to make a surprise inspection of the new high security wing. He’s far from happy to find one of his guards sunbathing instead of patrolling the perimeter. This is one guy you definitely don't want to mess with! I wouldn't want to be in your paw-shoes Mr guard!

The guard, with paws trembling, stands briskly to attention fearful of the punishment the camp Kommandant is sure to dish out. "You only have yourself to blame Mr guard. I did try to warn you that you had a special visitor arriving. Let's just hope he doesn't find out that it was YOU that was responsible for the last three jailbreaks!"

You've got one chance, and one chance only to impress me today, says the camp Kommandant with an expressionless face. "All I can say is you had better not mess this one up Mr guard. You know what he's like when he gets really angry. We never did find that brother of yours..."

With assistance from the guard the camp Kommandant slowly descends into the new high security wing. Let's just hope he doesn't find the secret tunnel my carers have been busy working on!

Oh no, they've found the exit to our escape tunnel. All that digging with teaspoons for nothing! He's only been here five minutes and already he's thwarted my plans. This Kommandant guy sure makes my regular guards look like a bunch of amateurs. I hope he doesn't have any relatives!

Eager to impress, the guard shows the camp Kommandant the new patent pending 'anti-jailbreak' electric sponge fitted between the walls. "I'd be careful where you place your foot, Mr guard. I do believe the Kommandant is holding the switch!"

They're up to something. The Kommandant wants some alterations made to the flooring. Couldn't quite hear what he was whispering but did catch the word 'mines' mentioned. Gulp!

The guard, keen to show initiative (and recover some brownie points) points out a suitable location for the watchtower. Oh no, the Kommandant has spotted us! Quick, run for it.

I'm not really sure what they're up to here. We did try asking but they just giggled and ran away!

Written, directed and edited by Mark

Shot on location (and so was the director)

No meerkats were harmed during the making of this photo story


This photo story has received a certificate rating of U

(universal, suitable for all)

May contain scenes of gross cuteness


A special thank you goes to Debbie who took the photos and has proved once and for all that she is as barmy as I am smile_regular.


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Friday, April 30th 2010

A carer turned student

Apart from injecting my own brand of humour into the blog I like to keep it liberally sprinkled with pictures, after all, who wants to read a text-only blog? Pictures add impact, grab the attention and draw you in far quicker than text alone can ever hope to achieve. I started to realise this towards the end of my first year of blogging when I looked back on the body of work I had produced and realised how text-heavy it looked. From that point onwards I began to create the graphical intros for each post. But it wasn’t until Francesca appeared on the scene that I was able to incorporate photographs on a regular basis as by this time even holding a camera was beyond me. And so for nearly a year she became my ‘official blog photographer’ and it was only thanks to her (oh, and my Photoshop skills) that I was able to keep illustrating my posts. But now of course Francesca has had to pull out which has left a bit of a void in my blogging capabilities. Enter Ann, my unlikely but willing victim student!

The student!

Now the problem I always have whenever I give my camera to someone to take a picture is that it can seem a bit overwhelming at first. The array of buttons and dials sprinkled across the top plate, back plate, and lens barrel can feel a bit bewildering. But modern cameras have become so sophisticated in handling the basic technicalities of taking a picture that quite often the only button that needs to be pressed is the shutter release, even on an enthusiast’s camera like my own. In this fully automatic mode my Canon 450D essentially becomes a point and shoot camera, albeit one with much higher quality optics and image sensor. But to be honest this is all I need when I am so reliant on other people taking the pictures. And at the end of the day it’s important to bear in mind that the purpose is merely to illustrate my blog posts, not to post pictures to photo gallery sites for commentary. I certainly don’t want to frighten people off with the technicalities of photography!

To my mind there are three massive advantages that modern digital cameras offer that make learning about how to take a good picture so much easier than it was when I was growing up. The first is automation. Modern cameras are capable of choosing the correct exposure, balancing natural and artificial light (and deciding on when to use Flash), as well as focusing (and even detecting where faces are in the frame). With all the technicalities taken care of the photographer is free to concentrate on the aesthetics of creating a pleasing image. As a person’s confidence and experience grows they can begin to override the camera’s automation and start to express their own creativity. So in other words modern cameras are capable of a great deal of handholding. They can be as simple or as complex as you want them to be. The second advantage and probably the one more than any other that gave it mass-market appeal and did to conventional cameras what video cameras did to Cine cameras is its immediacy. Being able to take a picture and immediately see the results on the back of the camera and assess it for composition, exposure and focus is a terrific aid to learning. How much better it is to learn from your mistakes at the time of taking the picture rather than waiting days or weeks – a real bonus when taking pictures of those once-in-a-lifetime events such as an exotic foreign holiday or an important social gathering. The third advantage is the low cost per picture. Modern flashcards with their ever increasing capacities are capable of holding literally hundreds of full resolution images. It is this coupled with the ability to quickly delete an image that encourages people to both experiment and to take multiple pictures of the same scene.

So with the technicalities taken care of we were free to look at the sort of things to improve even the most basic of snapshots. First we looked at ways of improving the sharpness of a photo. Modern cameras may very well have a wide range of shutter speeds for freezing (or emphasising) the action in front of the camera but they cannot compensate for camera shake. I’m quite fortunate in that the zoom lens on my camera is fitted with an image stabiliser and this can certainly help minimise camera shake but again it is not infallible. For best results in handheld photography a camera should be well supported with the arms braced against the body, and the legs placed slightly apart for additional support. When taking the picture the shutter release should be gently squeezed and not stabbed.

I then went on to explain about some of the common errors you see time and time again in snapshots which if avoided would result in me having to spend less time in Photoshop correcting (an increasing priority is my condition worsens). I explained about taking a moment to really look through the viewfinder before pressing the shutter and asking yourself what is really important in the frame. Can the subject be clearly seen and is it close enough, are there any distracting shadows, is the background distracting or relevant, are there any objects behind the subject’s head, is the horizon level, would the picture look better vertically? These are all fairly basic things but it is surprising how often these errors crop up and how much better even a basic snapshot can look if these things can be avoided.

After dispensing my little nuggets of wisdom culled from years of making similar mistakes myself I gave Ann her first photo assignment! I needed some pictures taken of the outside of the house before all the construction work starts. I wanted a record of how things currently look, particularly now with all the Spring trees and shrubs out in bloom. Once the builders have started work I will be reliant on people like Ann to document the changes, not just for the benefit of my blog, but also for my own benefit because until the extension is built I will of course continue to be trapped upstairs and therefore will not be able to see what is going on.

Now when it comes to people taking pictures for me I’ll admit I’m not the easiest person to please so poor Ann ended up making three trips outside the house before I was happy, not because the pictures were poorly focused or exposed, but simply because I wasn’t quite happy with the compositions! Ann got her own back though by placing her cold hands on my face and making me jump. Yes, despite being quite sunny outside it was also very cold so it was her way of letting me know what a taskmaster I was sending someone out in the cold weather, he he. But it was all worth it though. Looking at the pictures I’ve posted I think she’s done rather well, don’t you?

Thank you, Ann. You have done well my young old apprentice! smile_regular

Before I sign off I’ll leave you with a little challenge. Two of the pictures posted originally had passers-by in them but I have digitally removed them thanks to the power of Photoshop Elements cloning tool. But can you identify which pictures? Answers on a postcard…

This is the piece of ground at the side of my house that proved so difficult to gain planning permission for.

View from the rear of the house which gives an idea of the width of the planned extension.

A lovely close-up view of one of the Mexican orange blossom shrubs. The leaves smell just like oranges when you crush them between your fingers.

Finally even I get to see the lovely Spring flowers that Ann bought and planted for me in the containers at the front of the house. Until now I was the only one who could not appreciate all the work that she had put in on my behalf. They're lovely aren't they? Thank you, Ann.

I was waiting for this beautiful tree to come out in bloom before we took the pictures for this blog post.

The proposed extension will run the full length of the house. The side window will become the doorway into the extension.


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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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High Summer (August) – part 3

Calendar entries highlighted in yellow

23rd August 2009 – A grand day out

I had a really good day out. Me and my motor neurones spent a day up in London by the River Thames. I took them down to the Embankment and bought them an ice cream each and then left them to it whilst I went off for a walk to get some peace and quiet from their constant bickering! I tell ya, one day those flippin things will be the death of me, you mark my words! 🙂

On a slightly more serious note I had a wonderful day out up in the capital in the company of my brother Jason and his wife Chery, and my friend and carer, Francesca. In the run-up to my birthday tomorrow we thought we’d start the celebrations early and make the most of the good weather. Today was going to be a real test for me as it would be the first time I had made use of public transport with my wheelchair and I was a little apprehensive, wondering what sort of problems we would encounter along the way. We got off to a good start with Basingstoke railway station well prepared for disabled travellers. No sooner had we presented our tickets when we were asked if we would require a ramp and help on to the train. Our railway station also has lifts up to the platforms which I must admit I had never noticed before so access was easy. South West trains also have doors which are clearly labelled with the familiar disabled logo. A platform attendant was on hand to attach the ramp to the carriage and to ensure that we boarded safely. Just before leaving we were asked what our destination was so that they could ring ahead to make sure that someone was on hand to help us get off the train. Inside the carriage there is an area clearly laid out for wheelchair users and some adjacent seats reserved for disabled passengers, much like a bus really. Our train was packed with people taking advantage of the Summer Madness promotion with cheap travel up to London, so I was grateful that I had my wheelchair to sit in. Unfortunately my travelling companions had to stand nearly the whole way.

Once at Waterloo we headed off towards the London Eye although not by the usual ‘disabled-unfriendly’ route with the steep stairs adjacent to the Shell building. We had to leave the station by the main exit and work our way along the footpaths. Once at County Hall there was someone on hand to help us get our tickets and give as priority access. Unfortunately priority access doesn’t mean skipping the entire queue, merely some of it as I had worked out by seeing the number of wheelchair users scattered through the queue. Boarding the capsule was made easy by attendants putting a ramp in place and pausing the wheel. With a clear blue sky we had a fantastic view across London and I thoroughly enjoyed the ride. Oh yes forgot to mention, they’ve added something since the last time I visited, a 4D London Eye Experience. Basically it’s a 3-D movie projected onto a large screen that promotes and sets the atmosphere for what is to come. Not particularly long but good fun. Just be prepared to get squirted by water!

From here we headed off to grab a bite to eat at the nearby McDonald’s. Unfortunately the entrance required navigating some steps and the only way to do this was for me to get out of the wheelchair and gingerly climb the steps with Francesca supporting my arm, all the while conscious of the people entering and leaving, and worried that I might get knocked and lose my balance (so easy these days). Once inside there was a lift for wheelchair users that took you to the below street level seating area which on a day like today was packed. With help I was able to transfer to a normal seat (no choice really as all the seats were fixed to the floor adjacent to the tables so I couldn’t squeeze in with the wheelchair even if I wanted to). I felt so weak and my arms were so tired I gratefully accepted Francesca’s offer to feed me. I just didn’t care what nearby people thought.

The London Aquarium was our next port of call. Once again we were treated with priority service and gained concession rates with Francesca being treated as my carer. The aquarium is on several levels but it’s all disabled-friendly with lifts for easy access. Highlight of course must be the multilevel shark tank which you can view from different viewpoints as you move around the floors. At certain times you can see divers going into the tank to feed the sharks. Interestingly it never seems to be the same diver twice which perhaps explains the notice I saw by the admissions desk ‘divers wanted urgently, start immediately’. All I’m saying is the sharks look very healthy 🙂

Hard to believe but already the time was flying by (as it always seems to do when I’m in London). With the sun casting an early evening golden light across the Thames we took a cruise up to Tower Bridge. I would have liked to have taken the extended trip to Greenwich but time was pressing. Boarding the riverboat was less refined than boarding the train i.e. a couple of burly deckhands literally grabbed hold of the wheelchair and lifted it and me on to the boat! Even so we had to let the first boat go as the height of the boat’s deck was not level with the floating dock (by a considerable margin) and was deemed too unsafe to board. What they also failed to tell us was that the boat we were on would be taken out of service for the evening once it arrived at Tower Bridge and that we would need to wait for almost an hour for a return cruise. Still, it gave us a chance to walk over to the Tower of London and get a closer view of Tower Bridge. The return cruise docked on the north bank which meant having to get out of the wheelchair again and climbing the steep stairs up to Westminster Bridge. I was grateful to have Francesca and Chery at my side offering reassurance I was glad when I had reached the top and able to sit back in my wheelchair again.

It had been a really enjoyable day out even though it often felt like somebody had pressed the fast forward button and hours were passing like minutes (we never achieved everything we set out to do). As with my day out at Beaulieu the lesson to be learned I think is the more people who come with you the merrier. Having a few extra pairs of hands spread the workload, particularly when it came to pushing me. I’d like to thank everybody who came and made it such a wonderful day and for taking such good care of me, in particular to Francesca who conquered her fear of heights (at least enough to board the wheel with us) and rocking boats, and kept an extra careful eye on me. By the time I arrived home I was feeling very low on energy and because I had sat in a wheelchair all day my legs felt especially weak, so with my brother on hand to make sure I didn’t run into any difficulties I went straight to bed, grateful for the rest. The only disappointment of today? That Francesca had not lived up to her promise of giving me a piggyback around London or wearing me like Jar Jar Binks backpack! 🙂

Here’s a few shots to begin with. I’ll upload a separate gallery shortly.

My brother Jason on the London Eye.

With Francesca on the London Eye.

My brother and his wife Chery on the London Eye.

Francesca and I by the London Eye

With my brother Jason at the London Eye

Brothers! At the London Eye

Chery and I waiting for our Thames cruise. (photo courtesy of Chery)

With Francesca looking towards Tower Bridge.

Oh yes, one last thing or perhaps I should say first thing. Francesca had been extra busy this morning when she arrived to do my care but I wasn’t to find out until I had been washed, dressed and brought downstairs. The dining area had been decked out with balloons and a birthday boy banner… and some presents to open tomorrow. What a nice gesture. I’m so lucky to have such a friend and carer.

24th August 2009 – It’s my birthday!

I’m 49 today! After breakfast Ann and I had a card and present opening session. Well that is to say I sat patiently in my swivel chair whilst Ann opened the cards and held them up for me to read. Thank you to everyone who sent one and also thanks to all of you folks who sent me electronic greetings – a pleasant surprise when switching on my computer this morning. Oh, and a special thank you to Francesca who sent me a hilarious animated e-card, a sample of which you can see below.

A frame grab from the animated eCard that Francesca sent me

I phoned up Liftech this morning to chase up my stair lift as it has been a good two months since the order was placed and at the time I was given a 4 to 6 week delivery quote. I’ve been told that they are still waiting on Holland (where they are manufactured) and that are going to chase them up again. With my legs growing ever weaker I’m really starting to become concerned about my ability to use the stairs for much longer and it’s starting to feel like a race against time. I did explain my situation to them in the hope that it might help expedite things.

By strange coincidence I received a phone call this morning from an electrician working for Liftech who was in the area. ‘Would it be okay if I call round right now and wire up the spur in readiness for when the stairlift arrives?’ He asked. Absolutely, I said, glad that things were starting to move along at last. Within the hour he had arrived, been up into the loft and run a power lead through the ceiling along the edge of the door frame, and fixed a spur by the skirting board. Smashing, now all we need is the stairlift!

To celebrate my birthday we had a meal out at the Longbridge Mill where my closest family and friends gathered for the evening. It was so lovely to see everyone having an enjoyable time together and for once not having to eat by myself. I’d like to thank everybody who came along and made the evening such a joy. I hope you all enjoyed it as much as I did. Special thanks to Francesca for helping feed me and to Chery for supplying the delicious birthday cake. Not any cake mind you, an M&S cake!

Here’s a few shots from the happy evening. More to come.

Here she is at last…captured on film! It’s Ann, my lovely, friendly and devoted carer.

With my two lovely, devoted carers…and good friends!

With my two lovely, devoted carers…and good friends!

With the lovely Francesca!

With my Aunt Joan & Uncle Alan and Cousin Suzanne.

 25th August 2009 – Care package review

I had a meeting with Rachel, my social care manager, to discuss the latest situation with my care package. Over the past few months a few issues had surfaced that were causing concern and needed action. The most pressing was the inconsistency and variability of the evening calls that had sprung up. The agency were struggling to find suitable carers, or indeed carers with sufficient availability, and this coupled with hardly ever receiving a weekly care plan any more meant that I often had no idea who would turn up at my door or even when. Something that Rachel had proposed a little while ago was moving to a dual agency and it was supposed to be one of the topics of conversation for today. I was therefore a little surprised to be told that things have moved on a little since then and that the agency were basically saying that they could no longer provide consistency for the evening calls for the foreseeable future and that they were terminating that part of their contract which apparently they could do. However, after a conversation with them on the phone this afternoon they seem to have backpedalled a little bit on that and I’m now going to have a meeting with the Home Care manager later this week to discuss possible suitable carers and their availability. What this might mean unfortunately is an increased amount of carers which moves away from what I originally had wanted. If however we cannot find a solution I will be forced into dealing with two care agencies which is going to get even more complicated.

Another long-term gripe I have with the agency which I have highlighted on numerous occasions is the fact that my care plan is woefully out of date. It was written out when I first needed care back in October last year and has never been reviewed since. With a progressive disease like MND it should be reviewed and where necessary adjusted on a much more regular basis, say every three months, instead of the usual 12 monthly cycle which is fine if your disability or needs are static. My needs have changed considerably; for instance the care plan makes no mention whatsoever of all the personal care I now require each morning. Consequently whenever a new carer arrives at the house and looks in the care plan folder I feel obliged to apologise and tell them not to go by that and so I end up having to explain everything.

27th August 2009 – A meeting with the Home Care manager

Debbie, the Home Care manager for the care agency I’m with called round this afternoon primarily to rewrite the care plan but also to talk about available carers for my evenings. As I’ve previously mentioned my care plan bears little resemblance to the stage that I’m currently at so we sat down together and totally rewrote it. I went through it step-by-step explaining everything that happens from the moment the carer arrives in the morning through to leaving in the evening and breaking the tasks down into the three main calls. The document is going to be stored on their computer system with a three monthly review day as I requested. They are going to supply me with an electronic copy so that if anything changes I can review it against the document and notify the care agency to issue an updated care plan. We also talked at some length about the problems I’m facing with my evening calls. Debbie is going to go away and discuss with some of the carers I’ve highlighted what availability is and what they are prepared to commit to to ensure that I have consistency.

28th August 2009 – Seating trials / Editing with ease

Ann and I have been experimenting this morning with the perching stool I’ve had gathering dust in the main bedroom. This was something that Chris, one of my OT’s had brought round in the early days after the diagnosis, and which at the time I felt was premature as my legs showed no symptoms. I’d never been very keen on it and viewed it as a very basic model with its tubular metal armrests and back support offering no comfort. Now with my legs progressively weakening I’m having to look at all options to enable me to continue living as normally as possible. In recent months we’ve been using an old wooden chair for me to sit on in the bathroom whilst having my shave. However the seat height is only 17 inches and just recently I’ve started to need help standing up from it. The perching stool (which is height adjustable) raises the seat height a further 6 inches and makes it so much easier for me to stand up by myself. To overcome the tubular metal back support digging into my back we’ve wrapped a towel around it. So for now, problem solved. Something else were going to be looking at after discussion with my OT is getting another glideabout chair similar to the one I have in the dining room but with a higher seat height. The one I already have has a 20 inch seat height but apparently you can get 23 inch models to. The intention is to keep one upstairs as apparently it is the preferred choice for first floors when space doesn’t permit a wheelchair.

I must say that the foot mouse and switches I recently received from AbilityNet have made a world of difference to my ability to edit digital photos. It is so much easier now to use my left foot to activate one of the switches (which simulates the left mouse button) whilst using the fingers of my right hand to move across the trackpad. Thus I am now able to perform cropping actions with ease. For the last few days I’ve been busy preparing photos taken over my birthday ready for my blog. Without these new tools I would have struggled really badly. Thank goodness that there is technology out there that enables us to continue to do the things that we enjoy for a little longer.


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The month of July – part 2

Calendar entries highlighted in yellow

15th July 2009 – Measuring up

Cheryl (the council’s grant officer) and a group of folks from In Touch (the people who will be project managing the adaptations to the home), called this morning to assess the suitability of building an extension at the back of the house that would be large enough for a bedroom and a wet room. A potential problem is that I have a drain cover in the back garden just off the patio, and judging from how deep it is the feeling was that it may not be possible to get a build-over permit or even be able to build within 3 metres. Were that to be the case then any extension would be a non-starter. I felt rather deflated at hearing this news as all my hopes rested on being able to live out the remainder of my life in my own home.

Another option that is going to be investigated is building to the side of the house. My home is on a corner so my front garden extends along the side of the house. It’s not a particularly wide piece of ground and any extension would practically be up against the pavement. However it is quite long so may still be useable. They are going to check to see if there are any planning issues.

Towards the end of the day I got an email from Cheryl to say that the drain in the back garden is not a public sewer and can therefore be built on, but it would be difficult (and presumably expensive). Just waiting now on the outcome of the proposal to build to the side.

18th July 2009 – Helping hands

I was really grateful to Francesca for spending a few extra hours with me today and being my hands. I have an old desktop computer (and an even older monitor) that has reached the end of its life (at least for me) and Francesca, under my supervision, has been removing data, wiping external drives, and reverting the system to a previous much earlier state thanks to a hard disk image I had made, so that I could pass the system over to someone else. I tend to just use my laptop computer these days as I find using the trackpad a much easier way to move the cursor as it only requires me to push a finger around. Trying to wrap my hand around a mouse and guide it with my weak arms is too tiresome. Another useful feature of a laptop computer is the built in battery backup – very useful when carers suddenly pull the plug out of the wall socket so they can use the vacuum cleaner!

I also owe Francesca a big thanks for taking me over to Black Dam to watch the birds. It felt good to get out after being cooped up in the house so long.

20th July 2009 – Back to see the Neurologist

Jim and Val (from (NeighbourCare) picked me up this morning and took me up to the hospital for my 4-monthly visit to see the neurologist. Unlike last time when I had Alison and Francesca to keep me company and offer support, I was on my own this time round. I was anxious to find out what the results of my recent lung function test were but was disappointed when he told me that he had not been able to locate them! What a letdown. I’ll wait a week or so and try contacting my GP to see if the results have been made available. Apart from that not too much to report. We talked a little about my declining having a PEG fitted at this time. He reminded me of the window of safety that is getting smaller and suggested that I discuss it further the next time I visit the Southampton Respiratory Centre (September). He also reviewed the results of my recent liver function blood test and concluded that because the results appeared stable there should be no need to repeat the test for another twelve months. I also had the usual round of resistance tests in which I had to get a muscle group to move against his hand. This just highlighted how weak my legs and neck are getting although my mouth muscles still appear strong.

21st July 2009 – Finger splinting

Had a visit from Chris, one of my two OT’s, who came bearing gifts – a neat little finger splint for me to try for when I use the computer. I just wanted something to support my middle finger so that it doesn’t curl inwards. The other requirement is that I can at least remove it myself and ideally put it back on myself. I’ll be trialling it over the coming weeks but based on the time I had it fitted this afternoon it seems promising. I suppose ultimately it’s just going to be a short term solution until I can move to hands free computing solutions.

22nd July 2009 – A day with family

I’ve just had a very enjoyable day spent down in the New Forest in the company of my brother, Chris, and his partner, Anne, who have driven down from Scotland for a few days. Unfortunately because of distance and my inability to go anywhere unaided I’m not able to visit them, and so sadly we don’t get to see each other very often which means making the most of it when we do. Today we decided to revisit the National Motor Museum down at Beaulieu, a place I had not been back to in well over twenty years. Accompany us were my niece and nephew, Emma & Rowan, bringing our little party to five and filling up my brother’s car nicely.

Today’s excursion was the first time I’d used my wheelchair for anything more than a trip into town or getting some fresh air around the housing estate. I was curious to see how it (and me) would fare over a whole afternoon. The trip there was uneventful and my brother seemed to take great delight in reeling off information churned out by his new SatNav – the novelty hasn’t worn off yet! Getting the car parked presented no problems and although the disabled car park was full we were able to use the overflow which wasn’t much further along. We encountered our first taste of how the museum treats disabled people when we entered the admissions building and were ushered over to a separate desk to pay, where I got in at a reduced rate and my brother (acting as my carer) got in free.

After some group photos around a bright red 4×4 marking the entrance to the main museum building, we headed off towards Palace House. And it was here that we soon discovered that trying to push a wheelchair over gravel is not the easiest of things. I got shook to bits. Inside the Palace House I was restricted to the downstairs rooms, which meant The Entrance Hall, The Dining Hall, The Lower Drawing Room, and The Victorian Kitchen. Didn’t fancy taking my chances on the grand staircase and it wasn’t the sort of property to have a stairlift, hehe. Nevertheless I was able to step out of the wheelchair and walk around the rooms for a while. Outside it was more photos only this time I was determined to stand up for them and afterwards to walk back over the gravel until we reached tarmac where I once again sat back in my chair, grateful for the rest.

But of course Beaulieu’s main attraction are its cars and the main museum which apparently is home to something like 250 vehicles, including Del Boy’s Reliant, Mr Bean’s Mini and the DeLorean from Back to the Future. Unfortunately the flux capacitor was missing, dashing my hopes of ‘borrowing’ it and zipping off to the future to find a cure for MND :-). There are also various mini exhibits such as the James Bond Experience – apparently Bond’s car from Die Another Day was on display but as it had its invisibility cloak switched on I’ll have to take their word for that :-). I must say that I was very impressed with how courteous and keen to help all the staff were, from stopping the ‘time capsules’ on the Wheels exhibit so that I could board safely, to taking me in through a side entrance and giving me preferential viewing at the latest Top Gear exhibit. Definitely a disabled friendly tourist attraction.

I had been rather apprehensive about the weather as we’d had a few days of showers including rather a lot of the wet stuff yesterday afternoon, but luck seemed to be on our side and it remained quite pleasant throughout most of the day. In fact it only clouded over, grew dull and tried to rain as we were leaving.

I’d like to say a big thanks to everyone who came along and made the day so enjoyable, and an even bigger thank you to my brother who did a sterling job acting as my carer, wheelchair attendant, helping with the disabled loo, and even feeding me. Thank you so much, Chris. One thing I’ve learnt from today is that it’s best to go out with a group. That way there are more people to lend a hand, and it’s more fun too!

Here’s a few shots to be going on with. I’ll upload a separate gallery shortly.

Outside the National Motor Museum with my brother, niece & nephew.

Outside the National Motor Museum with my brother, niece & nephew.

Outside the National Motor Museum with my brother and his partner.

Outside Palace House. (photo courtesy of Anne)

Outside Palace House with my niece & nephew. (photo courtesy of Anne)

Outside Palace House with my brother. (photo courtesy of Rowan)

Outside Palace House…and still standing!

Inside the National Motor Museum. Me and the ‘ol jalopy. It never quite ran the same after I had it converted to unleaded! 🙂 (photo courtesy of Anne)

Inside the National Motor Museum. Me and Rodders! 🙂

Inside the National Motor Museum. This is what I got with my mobility allowance. Not bad eh? Just’s Francesca’s really. Carer’s get paid a bit more than average around these parts! Now you know why I like going out in her car! 🙂 (photo courtesy of Rowan)

25th July 2009 – Unfamiliar faces / Blog woes

Starting today and for the next week I’ll be surrounded by different carers as both my remaining main carers are unavailable. Considering the high level of personal care I now require this is going to be very disruptive. So much for my hopes at the beginning of the year for a robust care package. Lately with all the different people coming and going it feels like I’ve gone back to last December. I just can’t feel settled.

If anybody lately has been trying to access the hi-res versions of photos shown in my slide show galleries without success…I am aware of it. I discovered the problem a few days ago. It would seem that all the photos stored in the various folders have mysteriously gone missing and I know for sure that I haven’t deleted them. In fact I don’t even know of a way of doing a mass delete like that. But trying to access them now just results in an error message. At present I’m in the process of exchanging multiple emails with Microsoft’s technical support and getting passed from one department to another. Stay tuned…

Disappearing photos were not the only problem I uncovered. I also noticed that images I embed in blog articles which are normally stored in a special folder called ‘blog images’ have in fact been scattered across multiple copies of this folder, some with just a single picture in whilst others contain dozens. Why worry, you might ask? Well it becomes a problem if you use custom lists like I do to display which photo galleries to display and in which order as there is a system limitation on the number of folders. Fortunately I was able to work out a way of having just one ‘blog images’ folder, despite being told by technical support that they were aware of the problem but I would have to leave the folders as they were. I felt quite pleased with myself at still being able to work out problems like this myself and finding something to engage the mind, as well as learning about a very useful feature in my blog publishing software that I’d not used before.

28th July 2009 – Legal stuff / Almost…

I had a solicitor call round this afternoon to talk me through setting up a Will. To be honest this is something I’ve been meaning to do for goodness knows how many years, but like everyone else I kept putting it off. Only now at the eleventh hour do I finally do something about it. That is so typically me, haha. I was thinking about setting up a lasting power of attorney as well so that my brothers could represent me financially, but my wallet went into shock when I was told it would cost around £1000! And that’s on top of the £200 for the Will.

Had a bit of a frightening experience late this evening. I went to get up from the sofa when my legs suddenly gave way and I found myself on the carpet on my knees. In that moment of fear I had visions of being trapped on the floor of my living room until morning when my carer was due in. I tried to keep calm and stay upright as I knew that if I toppled over completely I would not have the strength to get up. I inched my way to the edge of the sofa and in what must have looked a clumsy manoeuvre managed somehow to catapult myself in a sideways motion back onto the sofa. After catching my breath I was able to wriggle myself into an upright sitting position and there I stayed for some time until my confidence sufficiently returned to allow me to attempt standing up again. I breathed a big sigh of relief once I was standing up…but it was the last time I sat on the sofa this evening.

30th July 2009 – Asking for a raise / Blog recovery

After Tuesday night’s bit of excitement I had Marion, my OT, call round this afternoon to look at the feasibility of increasing the height of the sofa still further. It’s currently sitting on 3 inch leg extensions but I’d like it raised as much again to take the stress off my upper leg muscles. Unfortunately the longest ‘off the shelf’ leg extensions the council have are 4 inch. It’s a pity they didn’t fit these to start with! Marion is going to arrange for Roger, the craftsperson, to call and discuss it and see what can be done. Another option she mentioned is having a riser/recliner chair which are supplied by the MND Association. The only problem with that is finding somewhere to put it as my living room area is not very big.

I got an email from Microsoft to say that the problems I’d been experiencing with all my hi-res photos going missing was due to a problem with server upgrades at their end and had now been rectified. Phew!

31st July 2009 – A meeting with In Touch

Sue from In Touch called this afternoon to discuss paperwork for the Disabled Facilities Grant and to show me some preliminary designs for the proposed extension. One design shows a single story extension to the side of the house. Because that piece of land is rather narrow it would mean everything would need to be stretched out in a line. I’m not overly comfortable with this design as the outside wall would be right up against the pavement and next to the road. Also the door into the extension would seriously affect the layout of the living room. More preferable is the second design built off the back of the house which would make it easier to move between bathroom/bedroom/dining area and offers a better layout in the extension itself. A lot of it will hinge on the meeting In Touch are having next week with the planners to see if there would be any serious objections to construction on either site.


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The month of May – part 5

Calendar entries highlighted in yellow

23rd May – Return to Black Dam!

Woke up to a gorgeous clear blue sky – not a single cloud in sight! With my personal care and breakfast out of the way, Francesca and I headed off to Black Dam once again. Although it’s the third time this month I’ve yet to grow tired of this tranquil little part of town that I’ve overlooked for so long. This time I got my trainee staff blog photographer to bring along my sturdy tripod and infra-red remote trigger in the hope that it might make it a bit easier to get some pictures of us together. As it turned out the remote trigger proved to be rather temperamental but we persevered and got there in the end. Technology! 🙄

There were lots of ducks and geese around this week and even Mr & Mrs Swan put in an appearance. I walked along the water’s edge under the shade of the weeping willows watching Francesca trying to entice the birds out of the water with pieces of bread. At one point we saw a whole brace of ducks swimming towards us, each one leaving a V shaped wake behind it. The pattern would have made a good picture. Anyway, here’s a few shots of Francesca and I just goofing around and having fun with the camera. Nothing too serious today, just enjoying the moment.

Lean on me! Francesca and I at Black Dam

Big smiles. Francesca and I at Black Dam

Happy! Francesca and I at Black Dam

Sneaky! Francesca and I at Black Dam

Is it on? Francesca and I at Black Dam

Where did those antlers come from? Francesca and I at Black Dam

Laughs. Francesca and I at Black Dam

Oh, and before I forget, thank you Francesca for writing out my nephew’s birthday card. I couldn’t have done it without you – literally. It’s so frustrating now not being able to write out family greetings cards for that personal touch.

25th May – More fun with the stairs

I’m not having a good time with the stairs lately. After last week’s fall I’ve had a hard time rebuilding my confidence and using the stairs has become very stressful. Yesterday when looking around my niece & nephew’s new home I was almost paralysed with fear coming down the straight, steep & narrow staircase. I was okay going up (albeit slowly) but as soon as I tried making my way down my balance seemed to alter, my legs felt weaker and my confidence left me. I ended up coming down the stairs sandwiched between my brother and sister-in-law with my hands resting on the banister.

Today when I woke up it took multiple attempts before I found the confidence to step off the landing and walk downstairs. Later in the day I got trapped upstairs again as my legs just felt too unreliable to attempt the descent and my arms are completely useless and cannot be relied on should I start to fall. Eventually I decided to try something different by sitting on my bottom and coming down the stairs one step at a time. So I held onto the banister rail that overhangs the stairwell and with my back against the wall gingerly slid down so that I was on the floor. No sooner had I done this when I realised that if this failed I would be trapped on the floor until my carer arrived. I have very little upper body strength now so it took a lot of wriggling along the carpet, whilst trying to ensure that my arms didn’t get trapped, before I was positioned face down with my legs pointing down the stairs. I then had to spin myself round and slowly descend on my bottom one step at a time in a completely undignified way until I was about three steps from the floor. At this height I was able to raise myself up albeit with trembling legs. Phew, what a nightmare! I think the staircase is an accident waiting to happen. I really wish I had the stairlift in place already but I’m still waiting for one more quote later this week. The other thing I wish I had was a downstairs toilet. That would make life so much easier for me as I would only need to use the stairs at the beginning and end of the day. I think every 2-story house should have one.

I tried to get on and edit some more digital photos from my recent excursions, but trying to simultaneously use the keyboard and mouse (required for certain editing tools) is proving frustratingly difficult. For all the time I spent on it this afternoon I still only managed to complete five photos.

Half way through the evening, shortly before I planned to sit down and watch some TV, I got stuck upstairs again on a visit to the bathroom. After the climb up my legs felt very weak and as soon as I attempted to descend my balance became unpredictable. I ended up having a very early night!

26th May – Taking it easy

Thanks to being stranded upstairs last night I ended up spending twelve hours in bed, haha. Amazingly I was able to sleep through most of it, although I did get confused at one point when I heard car doors slamming – I thought someone was off to work but it was someone arriving home at midnight! I’d only been asleep three hours! When morning finally arrived I didn’t attempt going down stairs until Ann arrived by which time my legs felt a bit more reliable. But I’m so wary of my legs now that I found myself trying to arrange my trips to the bathroom around the times when one of my carers was around. For the rest of the day I was sitting in one chair or another as I’ve noticed recently that my upper leg muscles are starting to hurt a little when I get up. It’s actually quite frightening the speed at which my legs are weakening now and I’m starting to grow concerned about the time I’m here at home on my own. Having carers around at least gives me some peace of mind.

Looking out the patio windows as I type away on my laptop and seeing the sun shining down from a clear blue sky brings a certain frustration and sadness. Not so many weeks ago I was at least able to go for short walks along the field behind the house but now I daren’t even attempt that. And I would give so much to be able to get on my bike and go cycling along the country lanes again. This is a very cruel disease.

28th May – More measuring up / An afternoon with Alison

‘Gavin the Gardener’ spent most of the morning tidying up my back garden and it really is starting to look a lot better. I’m glad I’ve been able to find such a hard working and reliable gardener. At least that’s one thing I don’t have to worry about anymore.

I had Paul from Bentley Mobility call at lunchtime to measure up and quote for a stairlift. This is the third and final quotation. Because of the way my legs are going lately I’m really keen to get things moving now. Delivery times with this company seem very good – if true. I’m being told that Stannah are currently able to offer an express service on curved track stairlifts and can deliver in 2 weeks. Add another week for the photographic survey and drawings and where still only looking at 3 weeks. Fingers crossed I’m hoping to be in a position next week to place an order.

Here’s a few scans from the brochure.

Page scan from the Stannah Sofia brochure

Page scan from the Stannah Sofia brochure

Page scan from the Stannah Sofia brochure

I had a pleasant afternoon with Alison using up some of this week’s social hours. She’d brought along a super-lightweight wheelchair that had been loaned by a friend just in case the walking proved too much. Although I had a little sit in it to see how it felt I was determined to get through the remainder of this month under my own steam. I had only been walking around the town centre for about ten or so minutes before I began to question the wisdom of my actions. My legs soon started to feel weak under the strain of supporting me and before heading back to the car I took a few minutes out to rest on a bench in the shopping mall. Clearly the days of me hoping on a bus and wandering around town by myself are over and in future I’ll just have to swallow my pride and accept being pushed around. The rest of the afternoon was less stressful and far more enjoyable as all I had to do was sit in Alison’s car whilst we took a pleasant drive down to Winchester. It was so nice just to sit there with the windows open and being buffeted by the warm air. Thank you, Alison, for everything this afternoon.

29th May – Spoilt by my carers – yet again!

Want another example of how much my carers spoil me? I have three flower tubs at the front of the house that through neglect had become infested with weeds. Ann had been to a garden centre yesterday and bought me a whole range of bedding plants so after she’d finished my care she got stuck into a spot of container gardening. By the time she had finished I had three tubs full of colourful plants that make the front of the house look so much nicer. How kind is that? I really am lucky to have such wonderful people looking after me.

Tried to go for a short walk with Francesca at lunchtime but didn’t get far before my legs started to tire and I felt it prudent to turn back and head for the safety of home. I never thought I’d ever hear myself say this but ‘roll on when I get my own wheelchair’! Well, it’s either that or spend my remaining days housebound and that is simply not an option. I want to continue going out, getting fresh air and having a change of scenery. To think, this time last year I was able to walk anywhere I wanted, and the year before I was cycling all over north Hampshire. What a horrible disease this is turning into as yet another of the things that made life enjoyable for me sails into the history book.

30th May – Weekly treat time again!


Sun is shinin’ in the sky,

There ain’t a cloud in sight

It’s stopped rainin’

Everybody’s in a play

And don’t you know

It’s a beautiful new day.


Runnin’ down the avenue,(Pant, Pant, Pant)

See how the sun shines brightly

In the city on the streets

Where once was pity,

Mr. Blue Sky is living here today.



Mr. Blue Sky, please tell us why,

You had to hide away

For so long where did we go wrong.


Hey there Mr. Blue

We’re so pleased to be with you

Look around see what you do,

Everybody smiles at you.


Mr Blue Sky, Electric Light Orchestra (Jeff Lynne), 1978


It’s Saturday, the sun is shining, there’s a clear blue sky, I’ve got the camera loaded, Francesca has the car parked on the driveway, and where headed off to Black Dam once again to supplement the birds weekly food intake. At this rate there are going to be some very obese birds waddling around soon. Don’t blame me guys n gals if you can’t take off!

I’ve been lucky with the Saturdays this month and have been able to get out for most of them. Because of time constraints we are a bit limited how far we can travel so we’re lucky this is so close. Didn’t take too many photos this time but still enjoyed watching the birds antics and being able to relax in the lovely warm weather. My legs were not too bad this morning and I was able to walk around without too much bother although it was reassuring to have benches scattered about. Thank you, Francesca, I really enjoyed this morning.

At Black Dam

At Black Dam

Francesca and I at Black Dam

Alison very kindly dropped by half way through the afternoon to make sure I had plenty of cold drinks on hand as it’s getting more difficult to even get a drink of water from the tap by myself, and on a hot day like today I drink a lot more. This act of kindness is yet another example of how thoughtful and generous with their time my carers are. It’s not even Alison’s turn to provide care for me and yet she still goes out of her way to do so. That’s dedication. Thank you so much, Alison.

From a lovely morning to a frustrating afternoon stuck in the house. I know I should be grateful that I at least managed to get out for an hour this morning (and I am of course), but looking out the patio windows at that beautiful weather and I would have given anything to be able to jump on my bike and go cycling down the country lanes, or simply go walking over to Manydown Farm. Instead I sat in my glide about chair near the patio window and soaked up the heat of the sun like a lizard basking on a rock. We all take our mobility for granted until it starts to fail us. I was just the same and it is so heartbreaking seeing it wither away.


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The month of May – part 2

Calendar entries highlighted in yellow

10th May – Photo shoot – take 2! / Time on my hand?

We’ve had gorgeous weather again today and my newly appointed staff blog photographer, err I mean Francesca, took pity on me treated me to another trip down to Black Dam to feed the birds and to prove that last week’s photos were no fluke. There was hardly a bird in sight when we arrived but as soon as Francesca began dishing out the bread in muck spreader-like fashion, birds appeared from all directions to ambush us. One in particular was brave enough to actually take bread from Francesca’s hand. I really wish I could have taken some photos myself to show you but at least I have some lovely memories of the occasion and Francesca herself managed to get some nice pictures once again of us both which you can see for yourselves below. Thank you again Francesca and for all the little things you did for me at the weekend (like changing the batteries on my wireless keyboard and connecting/disconnecting USB hard disks so I could back up my data). They may all seem like trivial things but mean a great deal to me and help keep me ‘operational’.

Francesca and I at Black Dam

Still standing! At Black Dam

At Black Dam

Francesca and I at Black Dam

Francesca and I at Black Dam

Francesca and I at Black Dam

I spent the afternoon editing some of last week’s digital photos ready for posting on this blog. I normally enjoy playing around manipulating images but that pleasure was mixed with a lot of frustration this time round as I struggled to control the mouse. At times all I could do was stare at my immovable arm waiting for some energy to flow back into it. It was painfully slow getting anything done today but persistence won out and I’ve finished the first batch. I’m quite pleased with them too.

Want another example of how well my carers look after me? Francesca dropped in on her way home this evening to deliver a surprise gift from her shopping trip – a foam pillow that will provide better comfort and support at mealtimes when I’m sitting in my wheeled chair. How thoughtful and kind is that?

I’ve just got through a whole week of not wearing a wrist watch which seems a very strange thing to me. Putting a watch on in the morning had become part of my daily ritual but lately even something so simple as a watch has not been without its difficulties. I have a very old Seiko watch that my dad got me around 30 years ago which I’ve hung onto not just because it’s a good looking watch but also for sentimental reasons. It is a purely mechanical watch with an automatic winding mechanism that depends on wrist and arm movements to keep itself working. Trouble is of course my arms don’t move much during the day so the watch soon stops working. That coupled with the fact that I’ve been struggling to release the clasp in the evening has led me to try and get by without it, after all the house has plenty of clocks scattered around (all reading different thanks to each room being in a different time zone 🙂 ). Looks like my Seiko has become just another relic of a life I used to lead.

11th May – A review of my care package

It’s been quite a day! I’m writing this late in the evening and I’ve still got a bit of a lingering headache from midday. Whether that’s from a weakened respiratory system (CO2 build up) or just all the stress lately I don’t know. But I do know I’ll be glad to hit the hay soon!

I’m trying to gradually transition into a higher level of personal care, partly to minimise the shock and the feeling of losing control, and partly because quite frankly all my strength is slowly seeping away so I need to preserve what I have left to help get me through the day. Just trying to get up and dressed has become so exhausting lately that I have started to welcome the idea of help with it. Yesterday for example I wasted so much precious time and energy just trying to put a jumper on whereas today with help my shirt was on in moments. My days of dressing myself are numbered…

Alison (my carer) offered to take me grocery shopping today. Usually it’s my brother, Jason, who is kind enough to do my weekly shopping, but Alison thought it would be a good idea to have a look around the supermarket myself and try some new things as my diet has become a bit samey lately. I must admit though I was a bit apprehensive about going shopping with a woman and was not too sure if my debit card could stand the shock, haha! But it was okay and my card is resting comfortably now having been given an infusion of funds 🙂 Although I enjoyed the chance to get out and buy some different things I must say that walking around all those aisles left my legs feeling weak. By the time we reached the checkout it was time to take the weight off my legs so I left Alison to pack whilst I sat on one of the nearby rest chairs.

At midday I was joined by Rachel (my Social Care manager), Debbie (Homecare manager for the care agency I’m with) and Alison (one of my main carers) who had all convened at my house for a review of my care package. I tend to have these reviews fairly frequently because of the progressive nature of the disease and Rachel’s desire to keep on top of things. This particular one came about because of all the difficulties I’m now starting to experience and also to discuss the implications of my recent respiratory tests down at Southampton. Since last October I’ve been chugging along on 14 hours of home care a week which initially was about right for my needs as well as meeting my desire to maintain as much independence as possible. In all that time the only change has been the addition of a couple of hours of social time which allows me to get out of the house in the company of one of my carers. But the additional personal care I now need has meant that my carers are struggling to fit everything within the allotted time. In fact to be honest they often end up staying longer. So today we’ve been discussing the tasks that need to be performed so that Rachel can build a case that she can take to the NHS for funding approval. We’re also going to try and get funding for a short midday call, something I don’t have at the moment. Knowing Rachel I’m sure I’ll hear one way or the other fairly quickly.

We also discussed the implications of needing NIV (Non-Invasive Ventilation) at some point in the future and how the care agency would handle that scenario (remember I mentioned a couple of posts ago that a condition of having the equipment is that there is someone on hand trained in its use at all times). Should it come to that then a sleep-in call service could be provided. This is different to a night call in that the carer will also be asleep but is on hand if an emergency arises. I believe though that with this service the carer can only be woken a set number of times during the night.

As my care package increases in complexity and resources it will become more difficult to administer. There will come a point when the amount of hours needed to support me in my own home will grow so great that there will be a strong argument to replace the team of carers I have with a live-in carer. I’m very happy with the people I have and have grown to know them very well and they in turn know what I like. I would hate to lose any of them but maybe one day when I am in a far worse condition it may sensibly be the only option because I would not be safe on my own. Let’s hope that that time is still some way away.

12th May – Measuring up!

I had Kevin from Liftability call this afternoon to measure up and quote for a stairlift. Two years ago the thought of me needing one of these would have seemed ludicrous but now it’s a matter of inevitability. At this moment in time I can still navigate the stairs but the signs are already showing that one day this may not be so. As with all things related to MND it helps to think proactively (I just don’t always take my own advice!).

I always thought that stairlifts were only suitable for straight staircases but not anymore apparently. They can fit them to stairs with corners and even to spiral staircases. My particular staircase has two 90 degree bends so I would need a curved track stairlift which is considerably more expensive then a straight one and because of their bespoke nature have little resale value. Apparently my stairs are nice and wide so installation would be relatively easy and could be done in about half a day. Liftability, who don’t actually manufacture the stairlifts, would recommend a Stannah on a duel track with a powered pivoting seat for my situation. Measurements were taken of my staircase but I’ve been told that if Liftability get the order then they will need to come back and do a photographic survey before sending the details to Stannah for manufacture. Lead time is about 4-6 weeks.

Here’s a few scans from the brochure.

Page scan from the Stannah Sarum brochure

Page scan from the Stannah Sarum brochure

Page scan from the Stannah Sarum brochure

Page scan from the Stannah Sarum brochure

13th May – Training day / Computer woes

I’ve given up on trying to dress myself. I spent ages yesterday struggling with socks and underwear whilst short-sleeved shirts have completely defeated me. By the time I have most of my clothes on I’m exhausted and the day hasn’t even begun. I took the easy route today and waited for Ann to arrive who then washed, shaved and dressed me. At least I managed to preserve more of my precious energy.

I had Margaret, the community physiotherapist call round midday to instruct all my carers in some techniques for exercising my arms. It was the first time Alison, Francesca & Ann had met up together although as time goes on I’m sure they’ll be working on double-ups when lifting and handling me becomes necessary. The session went very well and I’m afraid that I couldn’t let the moment pass without a stream of comments designed to embarrass or make my poor long suffering carers laugh. As Alison said, there’s nothing wrong with the mouth! Under Margaret’s supervision each of my carers were able to practise lifting and positioning my arms in various ways that will hopefully maintain the full range of motion and suppleness of the muscle tissue. They were also shown some techniques for combating cramp in my feet which I occasionally get and which can be quite painful.

My hands continue to give me problems. Today I had difficulty just using the cordless phone to take a call. I couldn’t even find the strength to press the buttons to pick up the receiver and switch the hands free speaker phone on. And throughout the afternoon my typing speed dropped considerably as my fingers tired and became unresponsive. By the time Alison arrived for my evening call my arms too had grown very tired and I had to enlist her help in moving some large files via flash drive between computers. Thanks, Alison.

Aside from the disability problems accessing my computer I’ve also had technical problems to deal with. A few days ago I updated Microsoft Office 2007 to Service Pack 2. We’re encouraged to do this to maintain the product’s security, fix bugs and even gain new features. The trouble is that sometimes fixing one bug just introduces another one. I discovered today that inserting pictures into files and saving them in Word 97-2003 format now creates files many times larger than previously and saving them in the new docx format crashes Vista completely. I wasted half the morning trying to recover from these crashes. On hindsight (which is a wonderful thing) perhaps it would have been more sensible to hold fire on the upgrade for a while and wait for feedback from the user community.


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The month of May – part 1

Calendar entries highlighted in yellow

1st May – Time rushing by

Hard to believe it’s May already. Time sure is rushing by. I’ve decided this is going to be a ‘make it happen’ month. I’ve got a number of things I really ought to be sorting out but so far I’ve managed to evade doing them, partly because they’re so depressing and partly because they will swallow up precious time I would rather use for other things. I’m just going to have to give myself a not so gentle push otherwise they’ll never get done.

Corresponded with Lara, my Palliative Care doctor, who’s been asking if I’d reached a decision yet regarding having a PEG fitted. I’ve written back to say I haven’t although I’m leaning in the direction of not wanting to have it done at this stage because in the 2 years+ I’ve had the disease I’ve never exhibited any bulbar symptoms. My speech and swallowing remain as they always have. I’m really uneasy about having an invasive procedure at this stage when I know it will be something I would have no use for in the foreseeable future. The disease is not spreading that fast in me so I believe I will get plenty of warning before I was to lose the ability to eat. I’ve also asked if we can arrange a meeting to discuss setting up an Advanced Directive (living will). This is something I really do want to get in place but need someone to explain to me the implications of saying yes or no to the various scenarios that could occur in the later stages of the disease.

I’ve been working on my blog site for most of the day turning the front page into a resource centre. What sparked this off was discovering a few days ago that Microsoft have integrated their online bookmarking ‘Favourites’ application into their Windows Live suite of Web services (specifically SkyDrive). What this has meant for me is that I’ve lost all the tags I painstakingly created throughout last year which helped me keep all my MND related web pages organised. I’ve also lost the ability to include my shared bookmarks in my blog as the Favourites module is no longer supported in Spaces. I’ve therefore taken the opportunity to create a multitude of new custom lists (with links to web pages) on topics such as research and organisations. I actually enjoyed doing this as it engaged my mind and gave me a purpose as well as the thrill of learning something new. I’m really pleased with the way it’s shaping up. When it came to creating a list of other peoples blogs what saddened me was checking the validity of the blog addresses and finding so many of the authors have now passed on. The morbid side of me was thinking that the same will be true of me one day. But at least some of my thoughts, feelings and experiences will live on – that’s the wonderful thing about modern technology; there will always be a little part of me here.

2nd May – Feed the birds (tuppence a bag)

What a lovely morning I’ve just had. Recently I was granted a couple of hours a week of social time as part of my care package. What this means is that I now have the opportunity to get out of the house a bit more and to feel safe in the knowledge that someone is with me. This will become increasingly important as my legs weaken. Up till now it’s been used mainly for walks around the estate or helping me get things done where I need an extra pair of hands. Today though, Francesca came up with the lovely idea of making the most of the sunshine and driving across to the other side of Basingstoke to feed the swans at Black Dam. It’s one of those places that’s almost on my doorstep and yet I never seem to go there. So we grabbed some slices of thick bread, dusted down my camera that’s been lying idle far too long and bundled into Francesca’s car for the short drive across town.

As soon as we pulled into the parking area and I had a chance to cast my eyes around I wondered why I had not bothered coming here sooner. It had an air of peacefulness about it with only a scattering of people spread out across the grass leading down to the water’s edge. Fortunately there were benches dotted around so I didn’t have to worry about being up on my feet too long with nowhere to rest. I’m finding that as time goes by I have to think about this sort of thing more carefully.

Francesca soon got stuck into food distribution duties and before too long had attracted a gaggle of geese. Disappointingly there only appeared to be the one swan around although there were quite a few ducks including a family of young ducklings. I felt frustrated at not being able to use my own camera. Not only have I lost the strength to pick it up and hold it, I’ve also lost the ability to operate the tiny buttons and dials. For someone like myself who used to enjoy taking pictures this is a crushing blow and another example of how cruel the disease is. But I’ve learnt that for every negative I must find a positive to balance it out and I didn’t have far to look. I was in a lovely setting, the weather was gorgeous, and I was in the company of my dear friend who as it turned out proved quite competent with my camera despite her cries of “I can’t take pictures”. Really? The pictures below seem pretty good to me, you kidder 🙂 I thought I was only going to end up with a couple of snaps of me for the blog but was very impressed when she hit on the idea of turning the camera round and holding it at arm’s length so that she could include us both in the shots. Well done, Francesca! I’m still amazed how you managed to get them so well lined up. After today’s demonstration I’ve no hesitation in promoting you to be my official blog staff photographer 🙂 Thank you for a lovely time.

Me and Mr Swan at Black Dam

At Black Dam by the water's edge

At Black Dam

At Black Dam

All smiles! With Francesca 🙂 at Black Dam

Francesca and I at Black Dam

Francesca and I at Black Dam

Francesca and I at Black Dam

What? You wanna piece of me? 🙂

4th May – Frustrating day

For the first time in ages I had a proper lay in and didn’t get up until Alison, my carer arrived. I opened my eyes to find her standing over me (but sshhh, don’t tell anyone, wouldn’t want them to get the wrong idea, hehe). Well it is Bank Holiday and having an extra 90 minutes in bed was wonderful smile_regular

I’m in summer togs at last. I’m wearing one of my newly modified short sleeved shirts that Linda, my friend from the MNDA, dropped off last week. These should be a lot more comfortable to wear with summer on its way, and hopefully easier to put on/take off thanks to the Velcro fastenings. Of course what happens to the weather today after such a lovely weekend? Yup, dull & overcast, light rain and cool temperatures. I think I put a hex on things smile_regular

It’s been a really frustrating day with my hands. I’m having such terrible trouble getting them to do anything. I spent ages chasing sandwiches around a plate at lunchtime because I couldn’t find a way to pick them up. And at breakfast Alison ended up feeding me because my wrists were too weak. Yes I know I have a mobile arm support but it is still limited in what it can do particularly in handling food that can’t be picked up with a spoon. Using the computer this afternoon has been painfully slow as my typing fingers are not responding very quickly. Consequently I’ve not actually achieved much today and as time is becoming ever more precious this has only added to my frustration. I’m going to have to start looking into what sort of ‘hands free’ computing solutions there are out there. I just cannot be without my computer.

5th May – Afternoon with my MNDA visitor

Back to warmer clothes again, hehe. So much for that idea!

My hands are still playing me up and its becoming a real problem if I need to use the bathroom. Quite worrying really. One of life’s basic functions/needs under threat…

I’m tired of looking out the window and seeing the garden go to rack and ruin so I’ve been in contact with someone who’s recently started up a local gardening business and arranged for him to call round tomorrow evening to discuss it. I don’t need a landscape gardener, just someone to do basic maintenance which I unfortunately had to stop last summer.

Ruth, my MNDA Association visitor dropped in this afternoon for our monthly chat. Nothing new to report, just discussing recent appointments.

Had an email message from Marion (OT) to say that she has contacted three companies to come along and measure up my stairs and to provide quotes for a stairlift. She’s also got the ball rolling on an application for a Disabled Facilities Grant so I can expect to be contacted at some point by a Grant Officer. That’s going to be interesting!

Posted a request on the Build-UK forum for information about ‘hands free’ computing solutions. I want to find out how other folks with limited or no upper limb movement manage to use their computers.

6th May – I need a secretary!

Well the phone has been busy today with the various companies that Marion contacted calling me to arrange appointments. Next week’s calendar is filling up already which is going to make it difficult to get out and do anything else. Actually, answering the phone is becoming a bit of a problem. Although I have cordless handsets and keep one by my computer when I’m using it, I cannot just reach out and pick the phone up because my arms are paralysed. The only way I can do it is to push my chair back and stand up then fumble around trying to pick the handset up and press the button to accept the call before it goes to answerphone. I don’t know what I’m going to do when I can no longer use my legs to stand up. Perhaps using Skype direct from my computer to make PC to landline calls might be the answer.

I’ve had a few responses already on the Build-UK forum about ‘hands free’ computing so have some suggestions to follow up on. It’s really useful being able to share ideas like this.

‘Gavin the Gardener’ called round this evening along with his wife to discuss what work needs to be done. They seem a nice pleasant couple who have been doing gardening as a hobby for many years but recently turned it into a business after being made redundant. He’s going to start next Wednesday morning…and not a moment too soon either. I cannot believe how many Dandelions have popped up on my front and back lawn in such a short space of time. Go get ‘em Gavin!

I’ve been following with interest this afternoon the live blog feed of the Amazon Kindle DX product launch from the States. The Kindle is another ebook reader very much like my own Sony Reader except that this new one has a much larger screen which makes it ideal for highly formatted documents such as newspapers and technical manuals. And like the Kindle 2 released earlier this year has access to a vast number of ebooks that completely dwarfs the Sony device. The only catch is you cannot buy it here in the UK. Come on Amazon UK, hurry up and release it here!

I’ve noticed that it is getting increasingly difficult to raise my shoulders, as in a shrug. Looks like the nerves are dying there now. I’m finding it harder to move my upper body and this is particularly frustrating in confined environments like the bed.

I kept myself occupied for the rest of the day trying to come up with a pleasing design for the intro graphic to my latest blog post. But the creative juices were certainly not flowing very quickly today and it took far too long to come up with a relatively simple design although I am actually quite pleased with its clean simplicity.


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A visit to Exbury Gardens

On Monday this week I had an opportunity to get out of what are now becoming all too familiar surroundings and to take some pictures with a couple of good friends from Eli Lilly. Robin and I had already spent an enjoyable day up in London back in May and were both keen to go out and do something else together. This time we were joined by Susie, another friend with a keen interest in photography. Our little band of photogs was steadily growing!! Anyone else care to join the party? I must say that going out with friends who share a common interest is so much better then going out alone and with my growing disability more of a necessity.

We settled on visiting Exbury Gardens, a place I’d not been to since 1984 but one which I’d had good memories of and felt confident in recommending to my friends. It was very much overdue for a revisit! Exbury Gardens are situated in the south of Hampshire down in the New Forest and are adjacent to the Beaulieu River. They are home to the world-famous Rothschild collection of rhododendrons, azaleas and camellias. The gardens, which were created back in the 1920s, offer over 200 acres of natural beauty to explore through a combination of walking, buggy rides and a steam railway.

We set off at 10:30am having first made a detour to the train station to pick up Susie, and then with the satellite navigation system programmed we headed off towards South Hampshire and Exbury. I sat there in the front passenger seat fascinated to hear this female voice coming from the electronic map display run off a string of instructions on where to turn and what exit to leave a roundabout at – and all with what appeared to be pinpoint accuracy. I’d never felt the need to have a Sat-Nav system all the time I was driving (being very much a traditionalist and quite happy with a 3 miles to the inch road atlas) but I must say it was a neat toy and no doubt had I not been forced to give up driving I expect I would eventually have bought one myself. I’m normally quite late in adopting new technologies!

We arrived shortly before midday and after a spot of lunch for which this time I’d remembered to bring a straw (a lesson I’d learnt from the trip to London because bottles of soft drink are now too heavy to lift), we decided it would be a good idea to take a buggy ride around the grounds first. That would give us an idea of the scale of the gardens and would enable us to make mental notes of interesting places that we could subsequently visit on foot later in the afternoon. We trundled along the pathways at a leisurely pace with a running commentary from the amiable driver. We saw rhododendrons of all sizes with some specimens really quite huge and obviously well established. Unfortunately we had missed their flowering season so only had green foliage to see but some of the leaves were massive. It was quite obvious that at the right time of the year the gardens would be a riot of colour and I made a mental note to try and come back next spring (and possibly this autumn too). Nevertheless despite the lack of mass displays there were sights to be seen and I found myself wishing that I could hold my camera up to my eye but unfortunately my arms have grown so weak and partially paralysed that I just cannot do much with them anymore when I am sitting down or in confined spaces such as in the buggy or a car. I really am quite helpless in those situations so all I could do was look on with envy as my friends clicked away whilst I just settled on admiring the lovely views. The gardens extend right out to the Beaulieu River and gave us a view of the numerous pleasure craft. Unsurprisingly the gardens are quite a popular venue for weddings and it has been known for the bride & groom to leave for their honeymoon aboard a boat moored at the nearby jetty. The buggy ride was scheduled to take up about 40 minutes of our afternoon but somehow seemed to swallow up twice that amount of time but no matter it was enjoyable anyway.

Exbury Gardens Guide-Spring


Exbury Gardens Guide-Summer

Before settling down to take some photos we headed off towards the rather grand sounding Exbury Central Station, the starting point for a 20 minute excursion on a 12¼” gauge railway featuring coal fired steam engines. The railway is a relatively new addition to the gardens and certainly wasn’t there when I last visited. We had some time to kill before departure so took the opportunity to try and get some photos of one of the steam engines sitting on a turntable outside the engine shed. I’d not taken any photos for over a month and in that time my arm and shoulder muscles had continued to weaken to the point where I found it almost impossible to hold the camera to my eye for more then a few seconds even when bracing my elbows against my body. I just about managed to get a couple of shots but even then managed to drop the camera once although fortunately the camera was on a strap around my neck. What makes it worse is that I now have to keep lowering the camera to make adjustments to the settings. Picture taking is a painfully slow process. I wish there was some way to have the camera on a swinging arm mounted to my shoulder. Anyone who ever saw the film Predator may remember that the alien had a shoulder mounted gun – well that’s what I want – only in camera form for a different kind of shooting!

The railway station itself was quite charming and was decked out in authentic looking posters from days gone by. Susie was as pleased as punch that one of the carriages on our train was emblazoned with her name! The whistle blew and we were off – over a small bridge and through a long tunnel. A group of tall Sunflowers made a colourful display alongside the railway track and here and there were metal and moss animal sculptures. We passed over a viaduct, made a short stop at Exbury North adjacent to the American Gardens and then continued along our way catching glimpses of several ponds and a lake before heading back along the tree and shrub lined route. All in all it was a very pleasant experience. There is something about old steam trains!

Exbury Gardens Railway Map

Time sure flies when you’re enjoying yourself and by this time it had become obvious that we would not have time to see everything on foot. Instead we settled on revisiting several features that we thought offered opportunities for photographs. First up were a few exterior shots of Exbury House itself and then on into Home Wood where there was a large pond full of huge carp that swam towards us. Judging by the amount of photos she was taking I think Susie was determined to take a portrait of every single Carp in the pond :D. There were also some friendly ducks who seemed more then willing to pose for us. Robin got some cracking shots of them but I didn’t have a long enough lens to fill the frame. We then followed a little stream to a small bridge where I watched the water tumble across the stones before ending our day photographing some beautiful blue hydrangeas.

Exbury Gardens Map

I knew that there was no way I was going to be able to hand hold my camera for so long once we started to take pictures so I switched to using a small lightweight travel tripod I’d brought with me and was itching to try. It’s nowhere near as solid as my ‘proper’ tripod but then again that is just way too heavy for me now. However, even using a tripod when you have limited upper limb movement is not without its difficulties. Even though the tripod only extends to 1 metre it is still quite a challenge for me to raise my arms up that high to operate the controls, and because I am loosing the precision dexterity needed to adjust such small controls it makes it even harder. It’s only when you have to compose a picture with a tripod mounted camera do you realise how time consuming it is compared to hand held photography where it is possible to make subtle adjustments to straighten out the horizon or improve the framing almost intuitively. Compare that to using a tripod whereby you need to continually make adjustments to the height of the legs or swivel the pan head to get everything level, constantly bend down to peer through the viewfinder and adjust the zoom ring to fill the frame and then pick up the whole camera/tripod assembly and move it to another location. The whole thing turned out to be a very frustrating process and I became a little dejected at how few pictures I was able to take and how many photo opportunities I lost because I am slowing down and cannot respond to a situation quick enough. It was even more frustrating when the following day I noticed that a few of the shots were not that sharp. I’m guessing that the act of pressing down on the shutter release caused the camera to move slightly on what is really only a fairly flimsy tripod. In future I’ll have to look at using a remote camera release.

The trip to Exbury proved that I am loosing the ability to go out photographing on my own. I’m at the stage really were I need an extra pair of hands…or two – a support team! I even need help putting the camera strap over my head these days – just cannot raise my arms high enough. But despite all of that it was a great day out in the company of good friends and for me a most welcome change of scenery. The weather was very kind to us and we were lucky that there were so few people about. In fact at times it seemed like we almost had the place to ourselves – it was so peaceful. Ideally it would have been even better if there were more flowers in bloom but I am not all that familiar with flowering seasons for specific plants – I just enjoy looking at them and marvelling at the near infinite variety of Mother Nature.

As the MND spreads it is making my life an increasingly difficult challenge. I hate the way this disease is systematically dismantling my life, taking away everything that gives me some joy in life. Naughty neurones – go to your room! 👿

I don’t really have much in the way of photos to post this time but I know that Robin & Susie took plenty, particularly of us so I may be able to upload some of those in a companion gallery along with a few of my own. Stay tuned!

Before I go I would like to offer my heartfelt thanks to both Robin and Susie. It was great spending the day with you folks and I really enjoyed it. Thanks for all your help, kindness and consideration, for ferrying me around, carrying my camera kit, for being patient whilst I tried to take a shot and for generally looking after me. Thanks too for all the photos you both took of us. Look forward to being able to do something together again soon. Oh, and an extra thank you to Robin for doing all the driving.


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Lets go fly a kite!

Basingstoke Kite Festival 2008


With tuppence for paper and strings
You can have your own set of wings
With your feet on the ground
You’re a bird in a flight
With your fist holding tight
To the string of your kite
Oh, oh, oh!
Let’s go fly a kite
Up to the highest height!
Let’s go fly a kite and send it soaring
Up through the atmosphere
Up where the air is clear
Oh, let’s go fly a kite!

Walt Disney’s Mary Poppins (1964)

Yesterday (7th June) I spent a very enjoyable day over at the Down Grange Sports Complex where the 16th Basingstoke Kite Festival took place. It was almost a spur-of-the-moment decision as I hadn’t even been aware that it was on until a local newspaper that arrived through the letterbox shortly beforehand had a front cover feature on it. And strangely enough for all the years that it had been on I have never actually been along to see it, so curiosity finally won over and on Saturday morning with the sun beating down from a sky filled with cotton wool clouds and a gentle breeze blowing, I set off on foot armed only with a camera dangling from my neck.

The kite festival is just about one of the only events that is in walking distance of my house and over the years it has built up a reputation for itself as being a great day out for families. It has become an international event attracting kite-flying teams from France, Switzerland, Germany & Holland and typically draws large crowds.

My own kite-flying days are long gone but like most children I went through a phase where we used to fly a kite on a nearby field. In fact I can remember even making kites out of polystyrene ceiling tiles (showing my age here) and taping streamers to the tail end made from strips of newspaper. They flew surprisingly well but didn’t fare too well with crash landings. I think I got through quite a lot of ceiling tiles that summer :-).

Twenty minutes after I had set off I arrived at Down Grange where I was greeted by a green octopus, a red caterpillar and a yellow duck! 🙂 Yup, I’ve arrived at the Kite Festival! These large scale eye-catching exhibits immediately caught the imagination with their extravagant designs and bold colours. Unfortunately the unpredictable wind patterns did not appear sufficient to enable the octopus and caterpillar to gain much lift but they did look impressive hovering slightly above the ground.

Overhead and high above were some of the altitude seekers, much smaller kites but able to reach up high into the sky. Not sure how high they actually were but I knew from the article I had read that the organisers had obtained clearance from the Civil Aviation Authority for kites to be flown up to 2,000 feet. In fact I believe they have an altitude competition.

The glorious weather had brought out a large gathering but Down Grange is spacious so it never felt packed. As I walked around the field I saw happy families who had brought their own kites along to join in the fun, giggling children running along trailing micro-kites only a few inches across, and other children not so happy and frustrated at why their kites refused to leave the grass! Music and announcements from the PA system permeated the air. Off to one side a row of ice cream and food & drink vendors catered to the crowds needs whilst the smell of burgers filed the air and made me feel hungry. A couple of specialist vendors were selling all sorts of kites in the hope of capturing some impulse purchases. Bouncy castles and inflatable slides kept children amused and I watched smiling as fearless children came hurtling down steep slides only to run laughing and giggling back for more. Its funny isn’t it that when you are very young you react without any fear of the consequences but as we grow up we start to think before we act.

A central cordoned off arena was the main focal point for the aerobatic displays, some of which bore an uncanny resemblance to the sort of thing you would expect from an air show. For example there was a team of blue kites that flew in tight formation and then exploded in all directions like a starburst – very impressive and reminiscent of something that the Red Arrows might put on. There were equally impressive stunt displays and a Rokkaku fighter competition in which the event’s various sponsors tried to knock each others kites out of the sky.

The kites themselves have come a long way from the elongated diamond or box shapes that I grew up with and much like hot air balloons they appear to come in all shapes and sizes quite often in configurations that appear to defy the laws of aerodynamics. Animals and insects were popular subjects at the show. There were kites that resembled butterflies, beetles, alligators, bats and a very impressive and colourful manta ray which was also one of the larger exhibits. There were kites in truly strange shapes such as a hoop with multi-coloured ribbons attached and another that was literally just a deep-walled ring. And yet amazingly they flew.

Photographically the day was a bit of a disaster. My weakening shoulders and unpredictable arms meant that trying to just lift a camera to my eye and hold it there for long enough to compose a shot was extremely difficult, and on several occasions my arms just collapsed and the camera fell away – although fortunately not far as I was wearing a camera strap. So because I was only able to hold the camera for a few brief moments the pictures really were ‘grab shots’. I think my days of hand-held photography are drawing to a close and I’ll have to start looking at camera supports but I’ve been reluctant to do so because of the extra bulk and weight of carrying it around all day as well as limiting my ability to respond quickly to a situation which changes rapidly like this kite festival for instance.

The other problem is I can no longer hold a long heavy lens which to be honest was what I really needed today. And constantly bending back (as opposed to raising my arms up high) to photograph objects in the sky left me with lower spine ache for the rest of the day. On the plus side the image stabilisation system built into my new camera’s standard short-range zoom lens is proving to be very useful and I’m not sure if I could take hand-held pictures now without it. The 12 mega-pixel sensor has allowed me in some small way to make up for the lack of a longer lens by providing sufficient pixels to allow for selective cropping and thus give me that extra ‘reach’ I need. It’s not the ideal solution but it will have to do for now. I believe that Canon do make a very compact and light weight telephoto zoom lens for this camera (with image stabilisation) so Ill take a look at that soon.

Apart from the physical and technical difficulties experienced taking pictures I was also battling with the sheer frustration of loosing so many shots. The kite festival was a wonderful opportunity to capture so many good pictures and yet so often I would loose them because I just couldn’t react quickly enough as I fumbled to lift the camera or my arms were still ‘recharging’ from a previous shot. All I could do was watch with envy as I saw other keen photographers walk by with their super-zooms and point them skywards with such apparent ease. I saw some wonderful acrobatic displays of multiple kite formations but just couldn’t find the energy to hold the camera and track the subjects long enough to get the shots I wanted. It is so frustrating when you have good equipment, great weather, an interesting subject and still not be able to make the most of the situation because your own body is letting you down. But ultimately that’s life and all any of us can do is to make the best of what we have. At least I can take some consolation in the fact that my current level of disability is not so great that it prevented me from going to the festival or taking any photos. My legs still seem sound too because I never noticed any tiredness throughout the day and I must have covered a few miles.

But photography aside it was still an enjoyable day and I came away feeling quite happy – and a little sunburnt. The whole experience was like returning to the care-free days of childhood; a low tech pleasure for simpler times. And that kind of appeals to me in this age of ever-increasing complexity where almost everything we buy has built in-obsolescence. I must admit that if it wasn’t for my disability I would have been quite tempted to buy a big colourful kite myself. Maybe get a whole group of us together and have the kites painted with motor neurones emblazoned on their wings. Then next year put on a display and fly them in the world famous ‘missing muscle’ formation! 😀

I’ll upload a small gallery of companion pictures soon. Just need to run them through Photoshop first to clean them up and make them half presentable.


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