Monday, May 24th 2010

An evening out with my carers

Hard to believe that it’s already been a month since I escaped the confines of the house for a few brief hours, but here we are and Debbie has once again organised another jailbreak. Amazingly we were just as blessed with good weather as we were last time with the sun beating down from a beautiful clear blue sky.

Although I’m always apprehensive about using the stairlift these days I needn’t have worried as I was in very good hands with Alli and Jan handling me at the top and bottom of the stairlift and into the wheelchair. They made it look so simple; I guess partly from the wealth of experience they have, and partly from the fact that I’m not exactly a heavyweight, especially these days.

Jan was my trusty chauffeur again as we took a leisurely stroll over to the Portsmouth Arms for our evening meal. You know I have to say that after being confined to the same surroundings for any length of time, I seem to have a heightened sense of awareness to the change in my surroundings. It really is surprising how many things you notice that you probably wouldn’t do if something became a regular occurrence. There was birdsong everywhere, both in the trees and in the hedgerows. Overhead a flock of birds flew by. The air was tinged with the smell of fresh cut grass. There was dappled light shining through the leaves, wild poppies growing by the roadside and even a few rabbits scampering around on the open grass. It really was a lovely evening to be out enjoying the fresh air and I savoured every moment of it. In years gone by on an evening like this I would have been out on my bike cycling down the country lanes and making the most of the last few hours of sunshine. But although such things are now just a memory I can still enjoy and appreciate the outdoors when my kind-hearted carers band together on occasions such as this.

The Portsmouth Arms looked lovely bathed in early evening light with people making the most of it and taking their drinks outside to sit under the sun umbrellas. We were lucky and were able to secure the same round table inside as last time which was situated in a little alcove with easy access for my wheelchair. Whilst the girls were tucking into larger meals I was quite content with a smaller portion of fried egg, sauté potatoes and ham followed by a rich dark chocolate mousse for desert. The whole evening was an enjoyable experience with good conversation, plenty of laughs and fine food. It was so nice to be able to eat with people in a sociable setting for a change. The time seemed to just fly by as it always seems to do when you’re enjoying yourself, and soon it was time to return home before my wheelchair turned back into a pumpkin. Once again Alli and Jan seemed to have no problem handling me and getting me safely into bed. Interestingly though I still seem to be able to weight bear after sitting in a wheelchair for 3 1/2 hours although I did need their help standing up.

So another night out has come and gone and already I’m looking forward to the next one which Debbie is busy organising. Hopefully we’ll be able to entice even more people to come along. Just before signing off I would like to say a big thank you to Debbie, Alli, Ann and Jan for a really enjoyable evening and for taking good care of me. It was lovely to see you all together.

The guards were on a heightened sense of alert after receiving a tipoff that there was going to be another jailbreak! 🙂

With Jan

With Jan

With Jan

With Alli & Debbie

With Debbie

With Alli, Jan & Debbie

With Alli

With Debbie, Jan (yes the tree really is growing out of her head! 🙂 ) & Ann

With Debbie, Alli & Ann


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Wednesday, May 19th 2010

Foot controlled study… and more

Jack from Possum called this morning bringing with him some equipment that has enabled me to start the gradual transition from an arm/hand controlled environment to one that is controlled using my legs and feet. This should keep me going for some time as I still have a lot of movement in my feet which is more than can be said for my hands. Well I hope it will anyway because I’m running out of limbs! smile_regular  Trying to operate all the switches on my desk has become so difficult lately that more often than not I’ll simply ask one of my carers to do it for me. But this is not how I want it to be; I still want as much independence and control over my environment as possible and fortunately there is a wealth of technology out there to enable that.

One of the pieces of equipment that Jack brought with him today was a portable floor stand for the Possum Primo, the infrared environmental control unit. The idea behind this is that we’ll be able to move the unit from room to room while still having access to all the equipment in that room from the Primo. So at night for instance the stand and its clip-on Primo unit will be placed by the side of my bed. This means that from now on I’ll be able to access the bed’s profiling controls by using my feet to press a large flat button fitted at the base of the bed. This switch connects via a plug-in lead to the Primo unit which in turn sends an infrared signal to a receiver unit that Jack has fitted to the bed and which connects to the bed’s electronics. Any thoughts of my carers coming in in the morning to find me sandwiched between the bed’s panels, with only my arms and legs sticking out as evidence of my being in bed can be dismissed, as the bed’s profiling controls have been programmed with a five second cut out smile_regular.

With the stand-mounted Primo unit placed by my desk in the study I now have access to all the equipment around my desk via a plug-in foot switch. Previously you may remember me mentioning being given a little black box that enabled me to activate a desk light, ceiling light, television and photo frame. Well, the infrared codes for all these items have now been programmed into the Primo so I no longer have to have my arm supported in the ergo rest to access any of this equipment. In addition I can also operate the intercom and front door release catch – all by tapping a switch with my right foot and cycling through the options on the screen. Eventually it may become too tiresome to use my foot and if that becomes the case then I will simply have the switch mounted on the inside well of my desk and activate it using my knee.

The one remaining piece of equipment in my study that still requires me to use my hands is the telephone. A replacement that can be connected up to the Primo unit is due to be installed in the coming weeks. It was due to be part of the installation process today but apparently there is a delay with obtaining the equipment. But even so today’s adaptations have made life a little bit easier for me once again, and for that I am truly grateful.

My increasingly cluttered work environment. However, without the microphone, arm supports, foot switches, phone cradle etc I simply could not function. To the right of the picture you can see the newly mounted Primo unit on its portable stand, whilst at the bottom of the picture you can see the red foot switch.


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Friday, May 14th 2010

A tiring week

In complete contrast to last week I’ve had visitors every day this week, and this coupled with not feeling my best lately has left me rather weak. Not so long ago I went through a phase where I had very little energy or appetite. This week has been a bit like that with eating a bit of a struggle and hard to work up any enthusiasm for. I’ve also started relying on ensure high calorie drinks again as a means of topping up my diet when I feel that I just don’t have the energy to plough through a meal. I’m hoping that it’s just another phase and I’ll regain my appetite along with some much-needed energy before too long.

So what’s been happening this week apart from the physiotherapy training session I’ve already written about? Well, on Tuesday Rachel, my care manager, called round to discuss an MND study day that my local hospice is organising for next month. It’s going to be open to healthcare professionals and care agency workers and will be a day-long event. There will be some workshops as part of the itinerary and these will focus on MND from the patient and carer’s perspectives. It is one of these workshops that my care manager has invited me to participate in. The format that I believe we are going to adopt is that of an interview with Rachel asking me a series of questions in front of an audience. I’m quite interested in taking part in the day’s activities and in a way giving back something as the hospice has been very good to me so far. However I am also conscious of my limitations. Talking these days wears me out quickly and I find myself taking a breath after just about every sentence. I also cannot project my voice very far these days so I think they are looking at providing me with a microphone so that it will be easier for me to talk. The hospice is also going to be providing transport for me and my carers to and from the venue.

Today has been another tiring day with Sue from In Touch spending half the morning with me filling out all the paperwork for the DFG (Disabled Facilities Grant). I thought I had already gone through all this, including the means test, last year. But this apparently is the formal paperwork and also because so much time has elapsed since it was first done they needed to go through all my finances again in case they have changed which would affect how much I would be expected to contribute. It will be interesting to see if the figures they come up with bear any resemblance to those I was given last year. Whilst she was here Sue was filling me in on how things are progressing with the house extension project. It would seem that only two of the three building contractors felt inclined to quote. Fortunately the council are prepared to accept that so once my finances have been reviewed and my contribution calculated and the council have given their approval then In Touch can give the successful tender the go-ahead. Fingers crossed that everything runs smoothly now and that construction work starts soon.

And after a busy week it’s time to rest…

Just a man and his Meerkat after a tiring week! This is what I'm up against - totally at the mercy of my carers 🙂


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Wednesday, May 12th 2010

More training for the girls

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

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

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

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

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

With Margaret (in white) and Chris

With Margaret (in white) and Chris


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Friday, April 30th 2010

A carer turned student

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

The student!

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

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

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

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

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

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

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

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

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

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

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

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

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

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


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