Happy Halloween

Hope you all have a spooky evening!

Enjoy yourselves! I’m on my own tonight. My meerkat friend is going out trick or treating in the hope that some kind person will give him a nice chocolate coated crispy locust! smile_regular


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Saturday, October 30th 2010

The return of itchy and scratchy… with a vengeance!

One of the things I really miss being able to do is scratch myself! Just think for a moment how many times we scratch ourselves during the course of the day. Well of course you can’t because quite often we do it subconsciously, never bothering to give it a second thought, our minds not even bothering to record the fact. It is only when the physical act of scratching the skin to relieve an irritation becomes impossible, does it rise in our consciousness ,and consequently our list of priorities! Don’t think that itching is a big deal? Okay, the next time you get an itch see how long you can resist scratching it!

Skin irritation and terrible itching has been something of an ongoing saga this year as the disease has slowly but inexorably robbed me of my remaining upper limb movement, thus leaving me helpless. Certain areas of the body seem to be more susceptible than others and recur at greater frequency. Back in April I mentioned the problems I was having with itchy legs, arms and back and how we were trying to combat it with E45 cream which didn’t prove that effective. It was only when we started moving to E45 itch relief cream and Cetirizine Dihydrochloride antihistamine tablets that we started to make some headway in getting the itching under control. We also discovered during my first visit to the hospice that washing in Aqueous cream also had a positive effect in suppressing the itching.

However, as time went by the itching returned, only this time it seemed to be predominantly around my waist and on the underside of my upper legs, normally when I woke up in the morning. First suspect was the glide sheet as all the body parts that were itching were pressed down on top of it. Could the plastic sheeting be causing the skin to heat up? Well we did find that by removing it the itching went down a little bit but failed to eradicate it altogether. The next step was to discuss the issue with my GP again who this time prescribed Doublebase cream and Loratadine antihistamine tablets as alternatives to what I had previously been taking. The thinking behind it was that maybe my body was becoming accustomed to the medication and therefore it was possibly losing its effectivity. Perhaps the trick was to alternate between two sets of medication.

Unfortunately we never got the time to fully test this theory before I was once again admitted to the hospice. Here the problem seemed to become even worse with new areas such as my wrists also becoming susceptible to itching. Some of the itching has been more or less on the surface of the skin whilst others are more deep rooted and at times drive me crazy. The funny thing is most of the itching occurs after I’ve been undressed and on areas of the skin that have been in close contact either with clothing (such as around the waist), or pressed hard against a surface (such as sitting in the wheelchair). As soon as this pressure is released and air can get to these areas of skin once again they begin to itch.

But not all of the itching is activated by relieving pressure on skin. In the case of my lower legs for example the itching occurs as my legs brush against the bed covers resting on top of them. It becomes something of a vicious circle; it starts with a slight itch so I move my leg slightly to alleviate the irritation. This movement causes the leg to rub against the bed sheet which in turn causes the leg to itch even more. And so the cycle repeats and I end up thrashing my legs about until I’m exhausted. So is my skin becoming hypersensitive?

Skin irritation does seem to be part and parcel of having MND judging from the information I’ve culled from forums on the Internet. I’m certainly not alone in this but unfortunately there is no universal answer and everyone that I’ve read about seems to have found their own solution indicating that the problem has its own form of uniqueness, like MND itself, for each person.

Here at the hospice I’ve had an opportunity to try some new medications. Dermol cream was the first one we tried but this didn’t seem to be very effective. Aqueous cream with menthol was a special order product that did prove effective on areas that I was unable to move such as my waist and the inside of my upper legs. However, it has the side-effect of cooling the skin to what feels like subzero temperatures! This in itself can feel very uncomfortable and it would often feel that I had a choice of either enduring about 15 minutes of terrible itching or about the same amount of time feeling absolutely frozen. However, even the cooling action of menthol proved ineffective on the itching in my lower legs as they brushed against the bedclothes.

The most recent strategy, combining a new type of antihistamine tablet that I take before going to bed, and using Dermol 500 lotion when I am washed in the mornings, seems to be yielding the best result so far. I certainly don’t itch nearly as much as I have been doing these past few weeks. Nevertheless there is still a certain amount of itching so the search continues for a treatment that will let me get through the day ‘itch free’.


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Friday, October 29th 2010

A little luxury

I had a real treat this morning. For the first time since arriving I was able to take advantage of the hospice’s new wet room. In fact I believe I’m right in saying that I am the first person to use it. This was something that I had hoped would be available to me when I arrived, but unfortunately the room (which previously held the extra long Jacuzzi bath which I so enjoyed on my last visit) was still being renovated. So sadly I’ve had to continue to make do with bed baths in the same way that I do at home, until today…

It’s such a simple thing and yet for months now it has been out of my reach: this wonderful feeling of being drenched in hot water pouring out of a shower head under pressure, of feeling the dozens of separate water streams impacting the skin, revitalising it. Bliss! After a couple of months of lying on the bed and being wiped with wet flannels this was luxury! Not as nice as lying in a hot foam bath with a Jacuzzi running full tilt, but still very nice especially compared to what I’ve been having lately. I think I could have quite easily sat under that shower head until lunchtime!


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Tuesday, October 26th 2010

Building works update

It’s been a dreary, miserable and wet day today, something of a complete contrast to yesterday when Vanessa was able to take me over to the hospital where we split our time between having a coffee in their restaurant, exploring some of the grounds, and sitting in one of their secluded gardens with its own pond, whilst listening to the sound of running water from a fountain. Hopefully when Ann comes in tomorrow the weather will have picked up again and I can get some more fresh air. I’m really trying to make the most of the opportunities to get outside whilst I’m here at the hospice as I know that once I go home I will still have a month or more of being trapped upstairs.

Sue from In Touch dropped in this afternoon to give me an update on how things are progressing with the house extension and also to ask me a few questions that the builders had raised. Although I don’t have any new photos at this time to share with you it would seem that progress continues to be made. The windows for example have now been fitted, which means that the extension is finally watertight. At least now the builders are no longer dependent on prevailing weather conditions. Upstairs in my guest bedroom copper piping has now been laid beneath the floor and into the roof space of the extension in readiness for the central heating. The patio windows in the dining room have now been replaced with French doors which will be my route out into the back garden via a level access patio which is awaiting construction.

So it looks like we are starting to approach the time when work can commence on the interior of the extension. I’ve been giving some thought to both my current and future needs and have requested additional electrical work to allow for a flat screen TV to be mounted at the end of the bed, something which I don’t currently have but will make a world of difference. We’ve also been looking at more mundane things today such as a roller blind for the bathroom, vertical blinds and curtains for the bedroom, and a suitable flooring.

Slowly everything is starting to take shape and I can look forward knowing that once it is completed my options (and indeed quality of life) will increase again. If only we were going into warmer weather rather than leaving it behind.


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A new way to read magazines? Part 1

My recent experience of trying to access and read magazines has been churning over in my mind for the past couple of days. Just flicking through that one issue of the BBC Wildlife magazine last week reawakened my interest in the specialist magazines, and to be honest I miss them. Reading online articles just isn’t the same and I miss the rich reading experience of well written and researched articles, specially commissioned photography and artwork, and appealing page layout and design. But reading paper magazines is beyond me now and will tie up too much of my carers’ time if they had to sit beside me flipping pages and then waiting patiently for me to finish reading. I’ve tried it with both magazines and coffee table books and unless the carer has an interest in the subject it must be boring for them and uncomfortable for me as I feel conscious of how long I am spending staring at each page. Is there another solution? Well, we now live in the age of eBooks so what about eMagazines? How far along are we in their development?

I’ve been doing a bit of digging on the Internet just to see what is currently available and what is in the pipeline. To give you an idea of the kind of things that are currently in the development stage, take a look at these videos which try to preserve the rich and immersive reading experience of a well-designed magazine.

eMagazines are the next logical step for electronic publishing now that the public are starting to embrace the concept of reading novels in electronic form. Like eBooks they offer some compelling advantages. Anybody who has ever bought a few magazines a month and hung on to them will soon realise how much space even a year’s worth occupies. eMagazines of course don’t occupy any physical space or indeed weigh anything (a real plus for travellers and commuters), will not fade with age, and are impervious to damage (clear advantages for those who like to archive their magazines). And for those of us who care anything about the planet we live on they are a green alternative that saves on trees, removes manufacturing and warehouse space, as well as eliminating transportation costs and associated pollution. And all of that excludes the costs of returning and recycling unsold magazines!

With eMagazines it would seem we are on the verge of a similar revolution to the one we are currently experiencing within the paperback/hardback novel industry, where the popularity of eBooks has gained sufficient momentum to achieve mass-market appeal. This is thanks in large part I suspect to the popularity of Amazon’s range of Kindle devices. Now it would seem the magazine industry is about to go the same way although this time it’s Apple’s iPad that is getting all the media attention. An early example of the kind of magazine specifically designed for this platform can be seen below.

However, both the Kindle and iPad are of no use to a quadriplegic. Neither are the solutions currently in development which all rely on touch control using finger gestures. So does that mean physically disabled people will be excluded from this coming revolution? Not necessarily. What I’ve been looking for is another solution, something that doesn’t rely on a mobile device or any kind of physical interaction, but instead can be read directly from a computer screen (in a similar fashion to Amazon’s Kindle reader) and can be controlled by my voice.

My search led me to an interesting website called Zinio that specialises in electronic versions of many popular newsstand magazines. The magazines are visually identical to their paper counterparts, the main difference being of course that you view them on a computer display. From my initial exploration of the online samples it would appear that they lack many of the advanced features of the concepts currently under development (as shown in the videos above). Rather than seeing them as the future of electronic magazines, I suspect what we have here is a sort of hybrid halfway solution; a stepping stone to what will be commonplace in a few years time. Nevertheless for people like me who are really only looking for a way of reading the magazines it could be exactly what I’ve been looking for.

I will reserve final judgement until I’ve fully tested the system and then I will report back in part 2 on the whole reading/user experience. In the meantime here are a collection of screenshots and comments on the various features of the online reader.

This is how a magazine will first present itself when viewed through the online reader. As can be seen the user interface is fairly minimal and nonintrusive with simple controls for moving forward or backward through the pages. There is an option to view in full screen mode and thus remove all other screen clutter but it was easier for me to obtain the screenshots for this post in windowed mode.

The contents page(s) can be accessed at any time via the button at the bottom of the screen. You can navigate directly to each article by clicking on their titles which highlight when the mouse cursor is placed on them.

A filmstrip viewer can be invoked from the bottom of the screen which aids in navigation giving a neat preview of a few of the pages before and after the page being currently viewed. You can jump to any of these pages by clicking on their preview images.

The gallery viewing mode is a neat way of seeing a pictorial representation of the entire magazine simply by using the scroll bar on the right. You can jump to any page by clicking on its thumbnail image.

An example of the readability at full-page magnification in a windowed application (this is not the same as full screen mode).

The magnifying glass icon at the bottom of the screen allows the page magnification to be customised. Paragraph text seems to scale well indicating that it is not simply part of a bitmap page scan.

Another indication that text is an independent entity from all the various graphical elements is the fact that it is searchable. The word 'fish' has been identified in several pages as can be seen in the search results box to the left which features preview images of each page found to contain the text.

In this magnified image we can see that all is not as it should be. The text in this artwork appears to be an integral part of the illustration (i.e. it is not a separate layer and is therefore not scalable). This would also indicate that the original scanned image is not of sufficient resolution to clearly resolve the text.


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Sunday, October 17th 2010

A stress free relaxing morning

We’ve had gorgeous weather here at the hospice today and I’ve tried to make the most of it by spending as much time as possible outside soaking up the rays of the sun… and topping up my suntan smile_regular! Actually with me it’s more likely to be red, peel, white!

It’s been a bit stressful lately with all the ups and downs of trying to find suitable care arrangements. At the beginning of the week I was introduced to a potential live-in carer but my gut instinct was that this particular person would not be someone I could tolerate living in my home. It’s not that I can’t have someone living with me; it’s more a case of it needing to be the right kind of person. Like a lot of people I guess I’m careful in those I choose to have around me and over the course of the past two years of professional care I’ve got pretty good at quickly sizing people up in terms of competency, initiative, personality etc. Unfortunately however I don’t really have the luxury of vetting people for suitability and my time here at the hospice is limited. In fact I’ve already been told that if a suitable live-in carer cannot be found then the only option I will have is to be moved to a care home. So at the moment I really am caught between the devil and the deep blue sea. I feel incredibly frustrated that the level of disability I have and the vagaries of the care sector have put me in a position where I have so few options. In the case of Monday’s visitor I was informed the following day that she had declined to become my live-in carer anyway. I guess we both could see that it wasn’t going to work so that ended that. Even if she had accepted she would only have been available for about six weeks before I would be back to square one again. Hopefully next week will bring some better news than I’ve had this week.

So back to today and a morning spent with the deliberate intention of not trying to dwell on anything and instead just leaving my mind open to the sights and sounds around me and seeing where it takes me. I think that’s one of the things about motor neurone disease that I’ve discovered; that as the body paralyses the mind has a tendency to overcompensate and make up for physical inadequacies by constantly running flat-out. I have found that this year more than ever I am developing a heightened sense of awareness of things going on around me… or is that just my photographer’s eye and poet’s heart still seeing the beauty in things around me?

It’s been a very peaceful and quiet morning and although the squirrels and birds are nowhere to be seen now that the garden is being renovated, there is still plenty of insect activity if you look close enough. There were wasps buzzing around, some too close to my face for comfort, and even tortoiseshell butterflies crawling around the flower heads. At one point I caught sight of a long thread of spider silk drifting lazily through the air and glistening silver in the morning light before catching on a railing. Overhead was a beautiful clear blue sky with the sun bathing us in light and heat and casting intricate shadows on the stonework around us. In the distance could be heard the drone of a single prop light aircraft whilst high above passenger jets left their signatures trailing behind them, their contrails looking like someone had scratched the sky with their fingernails.

As the morning wore on the first few fluffy clouds started to appear in an otherwise barren sky. The first one resembling a piece of candy floss speared on a needle as it intersected a long silver contrail. It was almost like somebody had opened a large box behind the hospice releasing the clouds and letting them fly up into the morning sky like a child blowing soap bubbles. As the clouds began to accumulate I just sat there marvelling at their intricate shapes and dreaming of what it would be like to be as free as a bird flying amongst them on a day like today. I so miss my mobility!


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Thursday, October 14th 2010

A cold October’s morning

Apart from Monday when it almost felt like a summer’s day with the sun beating down from a clear blue sky, it’s been on the rather chilly side this week. The leaves on the trees I can see from my bedroom window are changing to a gold/rust colour and slowly falling to the ground like snowflakes carpeting the pavements and producing a lovely crackling sound when walked upon. But despite the weather I’ve still been determined to get out into the fresh air for at least an hour each morning even though it now means having jackets and blankets thrown across the wheelchair. Being trapped inside my home for most of this year has given me a greater appreciation of the outdoors than I probably would have otherwise, and now that I am on level ground the temptation to go outside is simply too hard to resist. As the hospice is located on the outskirts of town and right next door to a very busy hospital there aren’t actually that many places to go on foot, or in my case on wheels. Consequently most of the time I just sit outside overlooking the rather barren looking garden sipping coffee and chatting with my carers.

Today for a change Ann and I decided to visit the coffee shop in the main hospital on the opposite side of the road. So off we went all bundled up in our autumn clothes only to find that the Costa coffee shop just inside the main entrance had a long queue of people and very little room to move inside. So instead we burrowed deeper into the hospital until we arrived at their restaurant where we sat chatting over a hot drink and munching on hot sausage roll. One of the staff nurses from the hospice came over to join us and help Ann with the wheelchair on the return journey as the path was on a steep incline. Mind you, according to Ann it’s worse holding onto a heavy wheelchair going down an incline rather than pushing one uphill.

On our way back I couldn’t resist poking my head in the WH Smith newsagent near the main entrance. Up until about two years ago a visit to the newsagent to buy my monthly magazines such as PC Pro, Focus, Photography Monthly, and National Geographic, or simply to stand and browse, was a regular and pleasurable experience. Sadly I had to give up all attempts at reading magazines a long time ago when my arms became so paralysed that even the simple act of trying to lift one arm with the other whilst holding onto a page to turn it would leave me feeling exhausted. Since then I’ve had to fall back on websites but the reading experience is simply not the same with all the distracting animated adverts, pop-up windows and hyperlinks. I miss the simple pleasure of relaxing in a comfy chair, flipping through the pages of the latest copy of my favourite magazines, whilst dunking biscuits into a hot drink. Bliss!

This morning I tried to recapture some of that feeling by having Ann push me along the magazine aisle in the hope that I might catch a glimpse of some of my favourites. And there they were, hundreds of magazines on countless subjects neatly arranged on shelves. My excitement grew as we homed in on the subjects that have most appeal to me: photography, wildlife, travel, science, computing, digital art. On one of the lower shelves I caught a glimpse of the latest issue of the BBC Wildlife Magazine. Ann picked up a copy and placed it on my lap and proceeded to flip through the pages. I was overjoyed at seeing the double page spreads of the preview images for this year’s Wildlife Photographer of the Year competition. So overjoyed in fact that I bought a copy of the magazine even though I knew full well that I would never be able to read it without help.

When we arrived back at the hospice I had Ann position one of the over bed tables up against the front of my wheelchair, and with its tabletop angled to about 45° we were able to perch the magazine on top and I could sit back and relax whilst Ann kindly turned the pages for me. It was a lovely way to spend the remainder of the morning whilst waiting for lunch to be served.

This morning’s experience had been something of a painful reminder of just one of so many things that this awful disease has taken away from me. You would think I suppose that after all this time a person could get used to it but the sad fact is you never do. Sometimes something will happen that will kickstart old memories of things that were once physically possible. Today it was the simple act of having my carer reach out and pick up a magazine for me. The feelings of helplessness and the grief of losing an ability that I once took for granted almost caused me to have tears in my eyes. There are times when I truly hate this disease.


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