The month of October – part 2

Calendar entries highlighted in yellow

8th October – Fixed! / Toileting woes

Tim from Liftech called early this afternoon to fix the glitch with the stairlift. It turned out to be a problem with the way the swivel seat microswitch was set up. He’s also reprogrammed the upstairs and downstairs wall controls that can be used to summon the stairlift. They stopped working when the stairlift track was extended which forced them to replace the electronics card because of the increased amount of teeth on the rack and pinion. So now I have a reliable stairlift that my carers can operate to bring me down stairs. The only thing outstanding is the ‘hands-free’ control mechanism which they are currently working on.

As my legs continue to weaken answering a call of nature is becoming quite stressful. Although I already have a raised toilet seat which I haven’t had that long I am already finding it difficult to stand up after sitting on it. The latest idea is to supply me with a Mowbray toilet seat and frame. This is basically a tubular metal frame with telescopic legs that is placed directly over the toilet. Sitting on top of that is a plastic toilet seat. Because it is height adjustable it can be raised up further than a simple clip on seat. Unfortunately it has not proved that successful for somebody like me with upper limb paralysis as the design of the frame and seat is too restricting on my arms and legs. This came to light this evening and resulted in a rather embarrassing moment for me as I was forced to call for help from my carer. This disease destroys all your dignity!

9th October – Planning submission under way

I had a guy from the planning department call on me this morning to take some photos of the side of the house where the proposed extension will be built. So far so good as it was only about a week ago that the planning application was submitted. Let’s hope the rest of the process is as quick.

11th October – I give up with some people!

My care agency were struggling to find anyone to do my care this evening as all my main carers were either off sick, on holiday, or out-of-town. And for various reasons all my backups were also unavailable or out-of-town. Things became so desperate that the out of hours on call woman had to come out and do my care herself! Later that evening and shortly before she left I took special care in describing how to operate the power doors in the living room and hall way as for some reason people still continuously get confused in which switch does what despite the fact that there are only three. I also stressed the importance of making sure that the front door was shut before leaving. So what happens? I’m upstairs at my desk as she walked out of the house. Immediately I notice something is wrong as usually I hear the sound of the lock on the front door engaging except this time everything is quiet. I immediately call the out of hours number hoping to catch her before she leaves but there is no response. After a couple of failed attempts I phone my next-door neighbour (who fortunately has just arrived home) to ask him if he can check my front door as I am unable to come downstairs on my own anymore. A couple of minutes later he notifies me that both the front door and hallway door are wide open! So thanks to my neighbour the house is secured again. After another hour or so I finally get through to the woman on the out of hours service who called earlier. When I ask her if she checked to make sure that the door was locked before leaving my house she admits that she was in a rush to get away. So basically she failed to comprehend which switch to operate and simply walked out of the house without looking back. I am completely stunned at the stupidity of this person. I am terminally ill, progressively paralysed and trapped upstairs unless helped. I depend on these people not just for my care but also when they leave to ensure that I am safe and secure. To walk away from such a person’s house without having the commonsense to make sure that the house was secure is bordering on criminal negligence. I could have been burgled or attacked in the night or one of the neighbouring cats could have found its way into my house as they like to do given the chance. Until my recent accident when I was still able to walk upstairs by myself at night I used to do a final security and safety check just to make sure that everything in the kitchen was switched off, that all the lights were off, and that the front door was shut. Now I am dependent on others to do this for me and as soon as somebody new comes to my house it all goes wrong. Needless to say I shall be having a quiet little word with the care agency tomorrow.

12th October – An afternoon at Birdworld

Fresh air at last! After three weeks of being confined to the house I’ve finally been able to get a change of scenery, the first since my accident, thanks to Kim who kindly donated her time. But the days of just grabbing a jacket, putting my shoes on, and jumping in the car are gone. Getting ready to go out is becoming a bit of an adventure in its own right. The wheelchair, sponge seat and detachable foot rests have to be packed away in the boot of the car. I then need help getting shoes, jacket and glasses on. We need to make sure that I have my blue badge, drinking straws and radar key (for disabled toilets) with me. I then need to be helped into the car, buckled in and my arms positioned for comfort. At the moment I am at least able to walk out of the house into the car but there will come a time when I will need to transfer from a wheelchair to the seat of the car and that is going to be interesting. The only part that caused me apprehension today was stepping out of the house because of the high platform outside the front door that was erected last year to make it easier for me to reach the lock. Nowadays stepping off the platform onto the driveway plays havoc with my balance and as this was the first time I had need to do it since my accident I was even more worried that my legs might collapse beneath me. Fortunately Kim, being the good carer that she is did everything she could to help steady me as I gingerly stepped off the platform. Silly isn’t it? Even a year ago I could not have imagined that stepping outside my own front door would be so traumatic.

We spent the day at Birdworld which is within about half an hour of where I live. We were very fortunate with the weather. The sun was shining and it was a beautiful clear blue sky although it was a little chilly in the shade so I was glad that I had my jacket with me. Being a weekday and out of season the place was pretty empty so we often found ourselves walking (or in my case being pushed) along pathways with no one in sight. From a disabled visitors point of view there are plenty of level pathways so it is easy to push someone around in a wheelchair. However there were a number of doors to attractions that needed to be pulled open which is difficult to do when you’re also trying to handle a wheelchair.

As the name would suggest there were birds, big and small, from all over the world. I’m hardly an expert in remembering the names of all the birds, but the more familiar ones such as flamingos, ostriches, kookaburras, vultures, parrots and my favourite, the snowy owl, stick in my mind. In addition to walking around 26 acres of aviaries and landscaped garden there is also an underwater world, basically a building housing a multitude of tropical and freshwater aquariums depicting ecosystems from around the world. And for the children there is the Jenny Wren farm where chickens, turkeys, goats, sheep, rabbits etc can be seen.

Halfway through the afternoon we stopped for lunch in their restaurant where we were the only visitors. Kim and I enjoyed delicious hot jacket potatoes with lashings of hot butter and a mountain of grated cheese. Yummy!

It had been an enjoyable way to spend an afternoon and I would like to thank Kim for sparing the time and for taking such good care of me.

Just a few photos this time unfortunately. We’ll try harder next time!

The birds at Birdworld!

At Birdworld

Mister Snowy Owl just didn't want to look our way!

13th October – I could have done with this yesterday / Planning application

Roger, the technician with social services called round this morning and set about building a ramp outside the front door. Originally the ramp was to be part of the house extension project but disease progression i.e. weakening of my legs and an unpredictable balancing system, necessitated a more rapid response so my OT made arrangements for it to be built using their own resources. It’s fully wheelchair ready so has a fairly gentle slope which of course means that it extends out from the door quite a long way. The surface is covered in the same nonslip material as was the platform and on one side there is a full length guard rail. In fact the whole thing looks a bit like a wooden bridge. Kim has suggested that we hang flower baskets along its length but I’ve got a much better idea, hehe. I was thinking we could paint the driveway beneath it and to either side a nice shade of blue, then I could get Remap to fashion some plastic dorsal fins which could be liberally sprinkled around the imitation moat. A nice little sign with the words ‘beware of the sharks’ would add the finishing touch and provide the ultimate double glazing salesman deterrent smile_regular. All joking aside I’m pleased with the outcome as it will make it a lot less traumatic to walk out my front door. There is also a ramp on the other side of the door in my hallway so that when the time comes it will be possible to leave or enter the house by wheelchair. The only downside is that my double width drive can now only hold one car.

I received a planning application notice this morning which needs to be displayed outside the house for about 21 days notifying the general public of my intention to build a single-storey side extension to my house. Kim has attached it to the tree at the end of my front garden. Fingers crossed I don’t get any objections. I’ve also been given a reference number which enables me to visit the council’s planning application register website and view the status of my application. A quick check reveals that it is at stage two of six ‘consultation’.

15th October – A visit from Lara

I had a visit this morning from the folks at St Michael’s Hospice. It was my regular checkup visit to see how everything was going. We talked about my slight loss of appetite, which is particularly noticeable in the mornings but can also manifest itself in the evenings. Lara is going to arrange for a dietician to come and see me although she feels from what I have described that I am already eating quite well. She’s suggested that I might like to try some Ensure drinks which are nutritional drinks high in calories for people who cannot take in all the calories they need from food alone each day.


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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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An evening with Katherine Jenkins

If only… 😀

Last night I had the opportunity to see Katherine Jenkins, one of my two favourite classical crossover artists (the other being Hayley Westenra) perform live at the Royal Albert Hall – and what a wonderful treat it was too! It’s been a good couple of years since I last had a chance to catch her singing live but it was so worth the wait.

The lovely Katherine Jenkins

I first saw the lovely Katherine back in April 2004 down at the Pavilion in Bournemouth when she was the supporting artist for Hayley Westenra on the UK leg of her ‘Pure’ tour. Back then of course she (Katherine) wasn’t very well known but it was immediately obvious from her performance that she was about to go places. She had that ‘star quality’ about her. Around about the same time she released her first album Premier which was a commercial success from the word go. A few months later I took a gamble and bought a copy myself – and was immediately hooked! Amazingly she was able to release a second album Second Nature towards the end of the same year and since then has remained a very prolific artist releasing a new album to critical and commercial success every year culminating very recently with her sixth, Sacred Arias.

In March the following year I went up to London to see her perform live in her own concert show at the Criterion Theatre. It was a wonderful evening; she came across as such a warm and friendly person with a sparkling personality and one of those lovely welsh sing-song voices – the sort of girl you’d love to take home to meet your parents. She was note perfect and made every song sound effortless and I knew then that I would want to see her again. And so I did late that year at the Barbican and again the following spring at the Royal Albert Hall where I was quick off the mark in booking a ticket and so managed to get a seat close to the front and dead centre. What a lovely view :-).

After 2006 the live concert tours dried up as Katherine joined forces with Prima ballerina Darcey Bussell for the very ambitious music and dance extravaganza Viva la Diva. For some reason I missed out on this although by all the accounts I’ve read it was spectacular. Oh well, there is always the DVD which has just been released…

The cover for the Winter Tour 2008 concert programme

So the winter 2008 tour is the first time in two years that Katherine Jenkins has been on tour and when the tickets went on sale earlier in the year I had to take a gamble. Would I be well enough to travel? How far would the disease have progressed? Would walking the streets of London and navigating around the underground system be practical or should I use taxis? Well I certainly wasn’t going to let the disease ruin everything for me so I booked my ticket online and just hoped for the best.

These days thanks to the Internet there is a wealth of information available to travellers so it is no longer necessary to travel ‘blind’. Consequently I was able to check for weather conditions, train departure times, journey times, see if there was any track maintenance or schedule alterations, pick the best routes on the London Underground and confirm when the last trains ran as well as orientate myself with the streets between the tube station and the Royal Albert Hall, and all from the comfort of my study.

So yesterday late afternoon I set off, grateful of the dry weather (my arms are so weak that I can no longer open or hold an umbrella) and made my way to the local railway station. I caught a fast train to London Waterloo then joined the throng of people on the underground. I’ve done this sort of thing a number of times now so I’m fairly familiar with it but being disabled this time did make me feel somewhat vulnerable. For instance I no longer feel comfortable standing up in a moving tube train because I cannot raise my arms to hold onto the overhead hand holds and traversing the steep escalators makes me feel a bit uncomfortable. I was also a bit apprehensive of getting through the ticket barriers but fortunately there were transport officials on hand to assist as well as a special disability walk through. Of course I could have caught a taxi at Waterloo but like a child at the funfair wanting jut one more ride I wanted to use the underground on my own one last time. Perhaps it would have been wiser not to though as early evening in London is of course the commuter rush hour. As I stepped off the train at Waterloo all I could see was a huge crowd of people. I had actually arrived early so had quite a bit of time to kill so I decided to take a walk over to the embankment to see the London Eye illuminated and to see what festive lights were on show. I soon abandoned that idea though when half way there the bitter cold became too much for me.

To get to the Royal Albert Hall means catching a couple of tube trains. The first one to the Embankment on the Northern Line was okay but changing to the District Line for the second and heading westbound until you reach South Kensington was a bit worrying because of the sheer weight of people trying to cram into the carriages. Inevitably I ended up standing and wrapping my arm around a support pillar as best I could whilst at the same time bracing my legs. I didn’t feel very secure and was glad to be on solid ground again. From South Kensington there is a long underground tunnel that leads out to Exhibition road and then it’s just a matter of turning left into Prince Consort Road and right into Kensington Gore. So fortunately not too much walking although still enough to make me feel tired and grateful of being able to sit down and rest.

The impressive venue - the Royal Albert Hall

The Royal Albert Hall is a spectacular venue which is even more impressive on the inside. In its time many of the world’s top performers have appeared there. I was lucky, I had managed to get a seat in row 7 of the Arena and fairly central too so I had a good close-up and unrestricted view of the stage. As I glanced around the huge auditorium which seemed packed to capacity, a testament to Katherine’s popularity, I felt dwarfed by the sheer scale. The upper balconies seemingly reaching towards the sky although I wondered what sort of view of the stage they would offer – probably like looking at ants.

At 7:30pm the show commenced with a medley of orchestral pieces performed by the National Symphony Orchestra (Katherine’s ‘regular’ orchestra when touring in the UK) under the baton of Anthony Inglis. Katherine then stepped out onto the stage to a large round of applause and opened with I Could Have Danced All Night wearing the first of her now trademark costume changes. She loves her dresses does our Katherine (or frocks as she calls them) and during the performance she changed four times, each one dazzling in its own right and each one generating much appreciation and comment judging by the voices around me. Even Katherine herself commented on her last dress after the gasps it drew from the audience by saying “this is what I got with my 2.5% off (a reference to the recent VAT reduction for those unaware). I saw it in Primark and just had to have it!”

I sat there mesmerised, enjoying the moment and letting the power of her voice wash over me. Something very special happens when beauty and talent collide. There is no doubt at least in my mind that she is both incredibly gifted and very beautiful. She is a marketing department’s dream. Her enthusiasm and love for music is infectious and there is always a great atmosphere at her concerts. But despite all the fame and success that her talent has brought her it is so lovely to see that it has not spoilt her. And I think it is that as much as her singing ability that makes her so popular.

It was indeed a very special evening not just for hearing all the beautiful songs that Katherine was singing but also for the range and quality of special guests that she had. From the Classical Brit award winning Blake and the very promising Faryl Smith (who’s voice seemed so much more mature then her 13 years) to the young American Pianist William Joseph who’s compositions really impressed me. Each of her guests in their own way were superb and blessed with so much talent. One thing I like about going to a Katherine Jenkins concert is that she is very generous with the limelight and gives each of her guests plenty of time to showcase their talents.

This was the first concert of hers that I been to that was so close to Christmas, and so perhaps inevitably there were a selection of Christmas carols and songs, some of which feature on her latest album like the beautiful Hallelujah. It was lovely also to hear her sing one of my favourites O Holy Night although I am still very fond too of the Celine Dion version. Inevitably with all good things time passed so quickly and before long it was 10pm and the show was over. I felt very frustrated that I was unable to clap my hands after each song to show my appreciation. I think if there is a next time I’ll have to get a pair of sprung loaded rubber hands, hehe.

Oh, and Kim, it was great to see a friendly face in the crowd. Thanks for coming over to chat. I hope you enjoyed the show as much as I did. I’m sure your husband did ;-).

Oh, I remember this one. That was the day she called round my house for tea. That’s my house in the background! I said ‘just stand there Kath while I quickly take a picture. No, don’t worry about the makeup; you look great as you are. In any case I’m good with PhotoShop 😀

Sitting on the train headed back home I felt exhausted but also very glad that I had been able to make it and glad that it had all gone smoothly thanks to my advanced planning. With arms that are so weak and respond only when they feel like it I knew it was going to be a bit of a struggle but somehow I had managed. But I also knew that it would be the last time I would be able to venture out like this on my own. My legs are not so strong anymore and I don’t feel quite as steady these days. Large groups of tightly packed people in close proximity to me are starting to be of concern (because of their unpredictability). Having said that I would hate to think that this was the last time I would go to a concert. But realistically if I were to go anywhere in future then I would need either a member of the family, a friend or even a carer – just someone who could be my hands and arms and be there if I needed them.

It had been a really wonderful evening and I had enjoyed once again the thrill of hearing music performed live and so well and in such a magnificent venue. Thank you, Katherine.


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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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