The other side of motor neurone disease

Much is written about the physical effects that MND inflicts on the body. I myself have spent the last three years documenting those changes here on the blog. However, there is another kind of onslaught going on, one that is even more insidious, one that doesn’t get written about so much. I am of course referring to the effect the disease has on the mind and of trying to come to terms with having something that is life-limiting and highly destructive, and where diminishing abilities give cause to wonder what each day will bring and what you’ll wake up to find you’ve lost. So here then is my journey from an emotional viewpoint.

I read somewhere once that there are a number of stages that someone faced with an incurable disease will pass through. First there is the initial shock of receiving such a devastating diagnosis. This is followed by denial, which in my case I suppose manifested itself in that period of time I spent early on trying to scoop up every last piece of information I could on the disease searching for a grain of hope. Anger is the next stage and for me this manifested itself in the frustration of how little is done to find a cure or a way of managing the disease. Grieving comes next as you mourn for the life that will be taken from you and saying goodbye to family. Finally comes acceptance as you eventually come to realise that no matter what you do you cannot escape your fate.

Well, that’s the ‘simplified’ version but perhaps another way of looking at it is the sheer range of emotions to be experienced as the disease progresses. Like a snowball things started off small as the difficulties first encountered were overcome to varying degrees and I was able to continue on with life with minimal disruption. Because I still had this illusion of normality all I really felt was frustration that things took longer. The first significant blow was when I was forced to give up driving, something I’ve been doing since I was a teenager. The loss of my independent mobility felt really strange in this car culture society of ours. Practically everyone I knew drove a car and now I felt excluded. It was the first real sign that my life was starting to unravel.

Having to give up work shortly afterwards had an impact on my self-esteem. Here was something that I had been doing unbroken since I was 14 (working in a shop after school) and now it had abruptly come to an end. All my adult life I had paid my way, never once asking for state handouts, and happy that I could contribute to society. Now for the first time I was faced with living without a steady income. But it wasn’t just the financial ramifications, there was also the social aspect of working with a team of like-minded people and the satisfaction of working in a good company doing rewarding work. Suddenly I found myself out of the workplace and feeling socially isolated for long periods of time.

The next adjustment I had to get my head around was accepting the fact that I needed some help. For someone living an independent life this was something I had not been looking forward to and I was quite apprehensive about it. But stubbornness and determination not to give in eventually lost out to an unrelenting disease. Initially it was just for mealtimes but even this was a big change and having strangers come into my house several times a day felt uncomfortable and invasive, even though they were obviously there to care for me. Suddenly a simple task like preparing a meal for myself had slipped away from me. It felt like my body was betraying me and that I had somehow let myself down. The disease had reached the stage where it was starting to encroach on basic living tasks.

Help with dressing was the next challenge I faced. Once again my stubbornness and determination prolonged the agony of trying to dress myself for far longer than it should have. I can remember even now struggling frantically in the mornings leaning against the banister rail at the top of the stairs trying to get my clothes on before my carer arrived, even though that was one of the tasks she was supposed to be helping me with! I can remember the days when I was frantic just because I couldn’t do up my trouser belt and I was thinking any minute now and she’s going to be ringing the doorbell! It all seems ludicrous now of course but back then I was still adjusting to having all these different people around me.

I suppose looking back one of the biggest hurdles to overcome was giving up my own personal care and the stress that put me under. With each passing week I would spend longer and longer in the bathroom trying my hardest to manage with arms that had no strength, frantically trying to hold on to my dignity. But eventually, and in desperation, I had no option but to relinquish these activities. Of course I’d known all along that sooner or later I’d have to but it didn’t make it any easier to accept. I don’t give it a second thought now but back then it felt distinctly uncomfortable being washed like a baby by people I was only just getting to know.

As the paralysis creeps forward so too does the fear. The sinister way in which the disease crept forward robbing me of strength and mobility is truly frightening. I think the first time I experienced a sense of fear was when I went out walking one day early in 2009. Halfway through my hour long walk and at the farthest point from my home, my legs, which up to this point had been sturdy and reliable, suddenly started to grow weak. It felt like all the energy was draining from them. Fearful that I wouldn’t be able to support my own weight for much longer I looked around anxiously for somewhere to sit down. But there was nowhere. I knew I couldn’t just sit on the ground for fear of being trapped there so I had no choice but to carry on. The dilemma I faced was do I walk fast and risk burning up my energy even quicker or do I walk slow and use up too much time? By the time I did get home I was shaking. It was the last time I ever walked so far from my house. In the following weeks I made ever more feeble attempts at going out for a walk by myself as my confidence in my abilities began to crumble. My world was beginning to contract.

As my legs grew ever weaker I started to feel a hostage in my own home, and tackling the flight of stairs each day became something that I would only do when absolutely necessary which meant that most of the day I would spend sitting at the dining table working on the computer. Walking up or down stairs became a nerve wracking experience as I wobbled side to side on jelly-like legs whilst immovable arms dangled hopelessly by my side threatening to upset my balance. It got so bad at times that my confidence completely left me and I was left stranded at the top of the stairs too afraid to risk stepping off the landing and walking downstairs. Eventually my legs and general body strength became so weak that I was unable to get off the bed without assistance. This brought with it further stress because of the need to visit the bathroom during the night and the risks it would entail. Finally of course I had to seek an alternative solution for the call of nature which led to some initial embarrassment on my part.

Further embarrassment followed as I lost control of the fingers in my hands. Above all else I was desperately trying to hang on to at least one shred of dignity and for a few weeks I struggled and struggled to hold onto toilet tissue long enough to use it. Eventually my hands became so useless that the tissues would simply fall through my fingers. I then faced the embarrassing situation of having to ask someone to perform this most personal of daily tasks. I felt truly awful.

In the run-up to losing the ability to bear my own weight last summer I used to dread having to stand up to go to the bathroom. I would practically be a prisoner all day long sitting in a chair only moving when I absolutely had to. Even then I required an increasing amount of effort from my carers before I was upright and stable. On wobbly legs with my carer close at hand I would stumble along to the bathroom. When my legs finally gave out it was something of a blessing in disguise as all the stress I had been dealing with everyday suddenly went away. No longer was I fearful of falling over.

And that brings me up to date with my emotional journey so far.  I am now living with the real fear of a fading respiratory system and all that entails making me effectively a ‘positional prisoner’ spending large amounts of time on the bed afraid to go too far for fear of suffocating. I have become heavily dependent on TV and computers for sensory stimulation. I’m very conscious of a ticking clock counting down the time left to me.

What I hate so much about this awful disease is that it is not enough to just take your life; it has to systematically dismantle it first by taking away so much that makes living enjoyable. Some time ago now I had a lovely dream in which I was cycling down the country lanes I used to so frequently pass through when I was healthy. The sun was shining, the sky was blue and there were fluffy white clouds as far as the eye could see. The fields were full of sheep and cattle and occasionally I would spot a horse. As I cycled past the hedgerow with its brightly coloured wildflowers, small rabbits would hop back into their burrows whilst colourful butterflies would flitter about the hedgerow. I was cycling fast, muscles pumping hard, enjoying the exhilaration of wind passing on my face and through my hair. Suddenly something didn’t feel right and as I slowly retreated from the dream I began to feel disoriented and couldn’t understand why I couldn’t move my legs and arms any more. The full force of where I was and what I had suddenly hit me and in that moment I could feel the tears well up in my eyes for everything that I had lost. In that moment of grief I would have given anything to return to that moment and live there.

Sometimes I lie in bed pondering the question of why me, turning it over and over in my mind, as if it was a Rubik’s cube and I’m desperately trying to find the combination that will reveal the truth. A futile exercise of course, but just an example that the disease is never far from my mind. How does it make me feel? Well I got it at 46 so I suppose the truthful answer is that it makes me feel that I have been cheated out of precious life and by several decades. I’m not bitter, just saddened and frustrated. Sometimes there is even a feeling of guilt – did I put myself in harms way by doing something, or perhaps going someplace or maybe even eating something that triggered it at some point in my past?

Do you know what the cruellest part of all this is? My mind is the same as it ever was, with the same hopes and dreams and ambitions but it’s trapped in a broken body whose warranty has run out and there are no spare parts. There is a countdown clock hovering above my head that I’m powerless to stop it. I’d cry if it would do any good. I remember reading some time ago that to find any kind of peace with something like this you need to find a way to come to terms with life the way it is not the way it was. In other words stop grieving for what has been lost. It’s good advice but it’s something I’ve never been very good at following. So where does that leave me? Exactly!

Having to give up hobbies and interests that gave my life meaning and helped define me as a person has been heartbreaking. I really miss the thrill of composing a photograph and holding a camera, or going out cycling or walking, or even just pottering around in the garden. At times it seems like my world has contracted down to a hospital bed about 6ft x 3ft even though my mind yearns to be free.

Has MND brought me any happiness or can I extract anything positive from my experiences? Surprisingly perhaps the answer is yes. I’m certainly not the kind of person to allow myself to wallow in self-pity and depression for years and if I ever get the energy to write something like this again I will put a few words together on that subject. But the purpose of this post was to describe the emotional rollercoaster that living with MND can be as you try to keep up with an endless series of losses.

Having MND is a bit like chopping into the roots of an old established tree. Eventually it will die but it will be a slow death. Come back tomorrow and it will still look the same and the day after that but its fate has already been sealed. My own fate was sealed from the moment those very first neurones started dying but like the big old tree my body has taken a few years to shut down. What is it like living with motor neurone disease? The only true answer I can give you is that it is a descent into hell.


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Diminished breathing… and its consequences

Breathing is one of those things that we all take for granted. It’s with us from the moment we come into this world until the moment we leave it. Seldom do we give it a thought until, that is, something comes along that affects its ability to function properly. My respiratory system has been in decline since the early days of being diagnosed with MND. Back then though the only indication I had was a set of steadily falling figures obtained each time I had a lung function test. Physically I couldn’t tell any outward difference although of course I knew this situation wouldn’t last forever. Fortunately for me my initial lung function test results were higher than average thanks to all the cycling and walking I used to do (and the fact that I have never smoked). Consequently I could tolerate a greater degree of deterioration before it began to impact me, which in a way bought me some time to adjust to some of the other horrors of this disease. Unfortunately I feel that I have now arrived at that stage and my inability to breathe in a way that I would wish is starting to impact me on various fronts as I come to realise the wider reaching implications of weakened breathing muscles as they slowly paralyse.

One thing I have become acutely aware of these past few months is how limited I am becoming when it comes to speech. By that I mean I struggle to get more than a few words out before literally running out of breath. Long sentences are now beyond my reach as I find myself constantly pausing to gather my breath. Consequently my speech doesn’t flow in the way it used to and is becoming much more of an effort. Because of this I’m finding my attitude to conversation to be changing slightly as I seek out shorter responses in an effort to conserve my breath. Of course reading this blog gives no indication of the effort I now place in the simple act of verbal communication because thankfully I can dictate it in my own time which quite often now is spread over several days.

But it isn’t just duration of speaking that is being affected. Last month I had an opportunity to go out for an evening meal with some of my carers for the first time this year. Although it was an enjoyable experience, I found it almost impossible to raise my voice high enough to overcome the background noise of the people sat around the other tables. The mere act of trying to elevate my voice left me feeling exhausted and curbed my enthusiasm for participating in the conversation as much as I would normally. At times it was simply easier to nod or smile. Not being able to breathe properly has a tendency to make you think very carefully about what you say too. It’s like having an ‘air budget’ which you need to learn to spend wisely. Telephone conversations are now also starting to tax my energy reserves to the point where I am left feeling exhausted in my efforts to make sure that people can hear me at the other end.

Apart from the obvious physical health concerns it can also have an impact on a person’s mental health. Not being able to talk fluently or in later stages perhaps not at all can lead to feelings of social isolation and frustration. With my upper limbs completely useless now and my lower limbs going the same way I am very much dependent on my voice as a means of interacting with the physical world around me. The voice is also something that uniquely defines each of us and is probably much undervalued all the time it is working properly. But without it social interaction is much harder, prone to errors and time-consuming, something that is of particular concern when trying to express how I would wish to be cared for.

Because I have so many eggs in one basket now my voice is being called on to do more and more of the work which in turn is increasing the chances of feeling breathless. For instance now that I am experiencing an increasing level of difficulty in using my feet to operate certain aspects of my computer system, it is placing a further load on my voice as I am forced to verbally describe, sometimes in quite precise detail, locations on the screen for positioning the cursor or insertion point. Perhaps it is not so surprising then that often now I feel quite drained by the end of the day simply because I spent hours dictating to my computer. The time is fast approaching when I will be forced to spend most of my time (when sitting at my computer) reading, listening and watching than actually working i.e. writing, photo editing etc. Slowly but surely this awful disease is changing me from an active contributor to a passive observer. In a sense it has already begun as lately I find myself spending more and more time reading downloaded books and magazines. As these require little interaction from me they don’t leave me feeling like someone has tightened a belt around my chest.

Another consequence of diminished breathing ability is my very poor appetite, something which in recent weeks has fallen to a point worse than it has ever been. In fact a large part of my diet lately has come direct from high calorie drinks which require a lot less energy on my part to consume. Solid food is becoming something of a token gesture and my diet is slowly becoming more liquefied as the weeks go by. It may not sound pleasant, and I’ll admit as much myself, but they do have the advantage of requiring a lot less energy to consume. This is a real shame because of course we don’t just eat to survive: we also eat to be sociable and for the sheer pleasure all those different smells, textures and tastes can bring. Eating is part of what it means to be human, it’s how we evolved to exist, and once again MND is denying me a human experience. The funny thing is I can lie awake late at night with my stomach rumbling thinking of all my favourite foods and how I would love to eat them right that moment and yet I know full well that the moment I wake up my appetite will have deserted me once again and I will struggle to eat some breakfast cereal.

With all the things that are going on lately centred around my breathing it feels a little like my life energy is slowly draining away. Recent experiences with difficulty in getting to sleep, feelings of nausea, and even a slight difficulty in breathing later in the evenings and after I exert myself, leads me to believe that I am once again approaching the next stage in the development of this awful disease. But this next one is a serious one because it impacts a life critical function and once that is seriously compromised…

Ultimately of course that is exactly what motor neurone disease is: a slow form of suffocation. Is it frightening? Of course it is. I’d be lying if I said it didn’t concern me. I certainly don’t want to end my days gasping for my last breath. I’ve already experienced a couple of nasty choking episodes and they were bad enough.

I’m due to have a meeting with my palliative care consultant from the hospice next week so I guess I shall be finding out soon what the next steps are. In fact ‘steps’ is a good way of describing disease progression in MND. Like a staircase you go along a little way having adjusted as best you can to your circumstances, and then suddenly you drop down a level as the nerves that control a particular muscle function finally reach a point where they are unable to function adequately enough. At this point there is a flurry of activity from the healthcare professionals as they rush around performing assessments, organising equipment and tweaking the care package. And then for a while things stay relatively stable whilst you try to adapt to your new lifestyle, all the while fearing the next ‘drop’ and what it will mean.


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3 Years of Blogging!

Celebrating three years of publishing to the web!

It’s time to break out the bubbly folks because today (15 February) I celebrate my blog’s third birthday. And what a year it has been too with so much to write about as I continued to document the changes brought on both in lifestyle and physical abilities by this horrendous disease.

For the blog itself the biggest change this past year has been in relocating it to a new home here at WordPress, something which was spurred on by the lack of development and limited feature set of my old blog’s home. I’d initially balked at the thought of recreating something like 2 1/2 years of content, and yes it did take a long time, but now that it is done I must say that I take considerable pride in being able to say that the whole of the new site has been created without touching the computer once! Everything you see here on this site is created and assembled using voice recognition software with the occasional movement of my foot controls to operate the screen cursor.

Moving the blog to WordPress has been one of my better decisions. Visitor traffic to the site has substantially improved; in fact it received more hits in its first six months here at WordPress than it did in its first 2 1/2 years in its previous home. There has also been a dramatic improvement in the number of people who have been kind enough to leave a comment or message in the guestbook (including a few nice surprises from people I’d thought had dropped off the radar – you know who you are), and it has been feedback like this that has fuelled my determination to continue developing the blog.

When I re-launched the blog last summer I started experimenting a little with raising its profile and trying to direct traffic to the site, an idea I got from my brother Jason who is very adept at this kind of thing. I won’t pretend for a moment that I’ve started to optimise the site using keywords and repetitive word usage (at the expense of readability) but I did dabble for a while in making use of blog search engines such as Technorati, and social websites like Twitter to try and increase the blog’s chances of being found and by the right kind of people. After all, there’s not much point in writing about motor neurone disease if the people who wish to find out about the disease aren’t aware of the blog’s existence. Surprisingly perhaps it was a subject that initially I had never given any thought to. All my energy had always been spent on creating content. I’d not made any effort to advertise it! So raising awareness of the blog so that I can in turn raise awareness of MND has been something I’ve devoted some of my time and effort to during the second half of last year.

Now as I mentioned last summer in my D+1000 post I feel that I have now reached the point where the story of my descent into quadriplegia has now been told. In addition I’ve also now completed the saga of getting a house extension built as well as documenting the ups and downs of dealing with care agencies. And so after all the turmoil of the past few years I have at last (he says with fingers firmly crossed) reached a point of relative stability. For how long, who can say? But now that I am living downstairs my options on how I wish to spend my time have been considerably increased. It is for this reason that the blog is going to receive less attention than it did last year. With time in short supply I want to spend some of it doing other things that bring happiness to me. I have quite a backlog of things to do which are going to demand quite a lot of my time. I’m also hoping to be able to get out and enjoy the fresh air on a regular basis. I’ve been cooped up inside too long and I want to make up for it. But there is no need to worry because the blog will definitely carry on; in fact for me it’s hard to imagine my life without it as it’s now become a part of me. I will continue to document anything significant that happens and intersperse this with special topics from time to time.

As time marches on I will become increasingly dependent on technology to allow me to communicate with the computer. Speech recognition software is now central to everything I do and that in turn is dependent on my voice. Although I can still talk clearly, and there is currently no indication that this is going to change any time soon, my ability to talk continuously and in an unbroken fashion for more than a sentence or so is diminishing as the months go by. I notice this now not only when I have a conversation but also when I dictate into my microphone continuously for any length of time. Consequently working the computer for a few hours with my voice is becoming quite tiring and it is now quite common for me to write these posts over several days so that I don’t feel exhausted. In more recent months I’ve found it increasingly difficult to use my feet to operate the mouse controls as they gradually succumb to the paralysis. For this reason I am now looking at alternative methods of controlling this aspect of the computer. At the time of writing this post my AbilityNet contact has placed an order for a head tracking system which they have asked me to try. They have also supplied me with a modified game console controller on a swivel arm which may also prove suitable. So yes there are solutions out there, it is just a case of finding the right one for me. The trouble with this disease is that you have to continuously be one or two steps ahead in terms of accessibility technology or risk being locked out.

Before I sign off I would like to express my gratitude to my carers, most of whom at some time or another have been kind enough to take up photographic duties for me so that I can continue to illustrate the blog. I would also like to thank all of you out there who have been kind enough to drop by and stay a while, especially those who took the time to leave a message. They are always very much appreciated.


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A new way to read magazines? Part 2

It’s been more than two months now since I wrote about my search for an alternative way of reading magazines and how it had led me to an intriguing website called Zinio. Since then I’ve been spending some considerable time familiarising myself with their electronic magazine service and looking at it in terms of usability for someone with severe physical disability. The following review is therefore slanted towards quadriplegics like myself, so one of the things I’ll be looking at is how easy it is to interact with when you can’t actually touch the computer! 

Introducing Zinio

Zinio is an online magazine service that tries to faithfully recreate the reading experience of a traditional paper magazine by preserving its whole look and feel. So in other words page layout and design, typography, editorial text, photography and advertisements all look exactly the same as a copy sold at a newsstand. Zinio offers a large selection of magazines on a wide range of subjects across multiple languages, so it isn’t just English-speaking people who can benefit from this service. Many of the big name publications can be found here and new magazines are being added on an almost daily basis.

An example of some of the popular magazines in the Science and Tech category. The menu on the left side enables you to refine your search to include only those publications in the subcategories such as nature or photography.

Keeping with the newsstand metaphor it is possible to ‘browse’ the magazines before purchase. This ability to ‘peak between the covers’ will vary from magazine to magazine. In many cases it is possible to view the entire magazine, albeit at reduced magnification. This will at least give you an idea of the overall content without being able to actually read any of the editorial. In addition however it is possible to ‘unlock’ up to 3 of these double page spreads so they can be viewed at full screen resolution (or above). Some magazines (presumably at the request of their publishers) either forbid browsing their content altogether, leaving you with only a cover to make a purchasing decision on, or restrict browsing to only several pages.

Previewing a magazine before purchase.

Using the system is easy. Anyone familiar with online shopping and downloadable content will find the process here very familiar: register and set up an account, select the items you want, place them in the shopping cart, go to the checkout and pay for them. Magazines that have been purchased will then appear in an area of your account called ‘my library’. From here you either have the option of reading the magazines online, or if you prefer you can also download them to your computer. The emphasis here is on your computer as each file is DRM (digital rights management) protected and therefore cannot be shared with anyone else. However, there is nothing to stop you from downloading the magazines to a second computer provided you use the same account details.

Purchased magazines can be viewed online in 'my library' and can be sorted and filtered in a variety of ways such as displaying only issues of a particular magazine or those that have not yet been read.

The reading experience

Having now played around with both the online and off-line readers I can say that the general reading experience and range of features on offer is almost the same. Indeed both seem to have the same interface and keyboard shortcuts making it easy to swap and change between the two.

Accessing your magazine collection from your online library offers a number of advantages such as allowing you to read your magazines from any computer that has Internet access, saving on hard disk space, and not having to worry about backing them up. However there are also some disadvantages of which the most obvious one of course is that if you lose your Internet connection you cannot access any of your collection. Also, like any web-based service the quality of your experience will be largely dependent on broadband speed and how good the hardware is at the other end. Where I live broadband speed is well below average so I tend to steer clear of streaming services and prefer to download everything. Nevertheless I have played around with the online player and not had too much of a problem reading magazines – provided that they are read in a linear fashion. A magazine read in this way will give the system sufficient time to load the next page into memory before it is required, thus giving an uninterrupted read. However if you like skipping randomly through a magazine then you may spend more time watching the page loading symbol than reading editorial. One thing I have noticed as the pages change is a tendency for the text to ‘shimmer’ slightly before settling down. I don’t find it particularly distracting but it is nevertheless noticeable.

So how easy is it to actually read a magazine without touching the computer? Well, those of you who know me or have been following the blog for some time will know that I’ve been using speech recognition software for over a year now. It isn’t perfect and quite often I come across a piece of software or a web page that is not fully compatible with it. I do wish that the people who create websites and applications would give a little more thought to those of us who are physically disabled. Fortunately Zinio’s reader application works quite well with my Dragon NaturallySpeaking software and navigating around a magazine is easy. For instance to go to the next or previous page I just need to say “move right” or “move left”. To go to the beginning or end of the magazine it’s “press home” or “press end”. If I want to fill the whole screen with the magazine then I just need to say “full screen”. And if I want to see the contents page it’s “press c”.

Reading a magazine in this fashion requires little effort as most of your time will be spent either reading editorial or studying illustrations with the occasional instruction to move to the next page. Unfortunately that will only work if you have a large screen. At the moment I’m having to make do with a 15 inch laptop screen running at 1366 x 768 pixels which isn’t ideal. At this size and resolution text is simply not legible enough even in full screen mode. It’s hardly surprising when you consider that quite often a magazine is published in A4 format so it therefore follows that the whole page design was conceived with this shape and size in mind. Therefore to get the best viewing experience (i.e. no zooming and scrolling) is going to require a large monitor equal in height to a physical page and possessing enough vertical pixels to preserve the fidelity of the printed page. I don’t have one at the moment but I would be very interested to hear from anyone reading this post who possesses a large computer screen (say around 20 to 24 inches) who has either tried the service or is willing to take a look on my behalf at the online samples to see how well they look and whether everything is readable.

Two page view at normal magnification using the online reader.

Single page view at normal magnification using the online reader. Text is unreadable on a laptop sized screen.

Clicking on a page will increase magnification to fill the width of the screen (and considerably improve legibility).

To overcome the limitations of screen size I’ve had to adopt the following system. First I use the verbal command “mouse grid”. This causes a nine cell grid to be overlaid on the screen from which a number can be selected that is closest to the area of interest. The cell that has been selected is then itself divided up into a nine grid cell from which a further selection can be made if greater precision is required, and so on. So the whole sequence of instructions that I would issue might sound like this “mouse grid, press 2, press 4, click”. Using the mouse grid in this fashion only helps in navigating to the area of interest and zooming in one level. So in other words no matter how precise I am with the mouse grid I can still only zoom in one level. Quite often this will be sufficient to enable me to comfortably read the text. If it isn’t then I can say “press shift equals” to zoom in further or I can say “press shift minus” if I want to zoom back. Using these commands it is possible to zoom half a dozen or so times – more than enough.

Magnifying the text to a level that is readable solves one problem and introduces another, i.e. we can now only see a portion of the page. To overcome this problem we can set the page to continuously scroll in any direction by speaking any of the following commands “mouse drag up”, “mouse drag down”, “mouse drag left”, “mouse drag right”. The page will now gradually reveal more text as it moves in the direction instructed. Thus it is possible to read from the top to the bottom of the page without continually issuing instructions. However once the bottom of the page has been reached it will be necessary to stop the scrolling, reposition at the top of the next page (or paragraph) and repeat the process. Written out in this fashion it does seem quite a long winded process, and yes it is not ideal. But now that I have read a number of magazines cover to cover using the techniques described above, I have to be honest and say that is not too intrusive, and in fact I have now got used to it so don’t give it much thought although I will admit that it would be so much easier on a larger monitor.

The speech recognition’s MouseGrid in operation dividing the screen up into areas. Normally this would be used for precision cursor placement when trying to access a stubborn hyperlink or interface control. In this case however the MouseGrid is being used as an aid to zooming in on an area of interest.

Accessing any square in the grid of nine cells reveals a further grid of nine cells. This can be repeated a number of times until the area of interest is centred.

When an area of interest has been identified it can be zoomed into by issuing the command 'click'.

Off-line reading

To read magazines off-line will require downloading and installing the Zinio Reader (and Adobe’s AIR runtime if you don’t already have it installed). Once running the software will periodically check for new issues that you’ve recently purchased or are part of a subscription. If it finds any an image of the front cover will appear in the relevant time slot with an option to download it. You can if you wish alter the preferences so that checking and downloading is an automatic process whenever you launch the reader. There are various organisation and navigation tools available but I have not been able to get these to respond to voice commands directly. However, using Dragon’s MouseGrid command it is possible to access these features albeit in a much slower fashion.

The off-line reader is capable of displaying a magazine collection by date...

... Or by magazine name

The filmstrip viewer cannot be accessed or controlled using direct voice commands. A workable alternative is to use the MouseGrid in Dragon's speech recognition software to zoom in to a thumbnail image.

The same applies to the thumbnail grid. Aligning the cursor directly over the scrollbar and using the 'mouse drag down/up' commands enable scrolling whilst the MouseGrid is used to make a selection.

It is possible to perform simple searches which will identify all the pages in a particular magazine that contain the search text.

Visual quality

Many of the magazines I’ve downloaded will typically weigh in at around 20 megabyte with each page occupying on average between 100 to 200 kilobyte. Now I’ve played around a couple of years ago with scanning magazine pages into my computer so I know from my own experience that to preserve a decent quality file sizes need to be significantly higher than this. The fact that they are so small would indicate to me that a compromise has been made between preserving image quality and maintaining a nonintrusive online reading experience. So how does this translate to visual quality? Fortunately it has no effect on the text which appears sharp at any magnification. However, the rather severe compression is definitely noticeable in photographs that contain areas of near continuous tone such as the sky. Zooming in a few times to take a closer look at something also soon reveals familiar JPEG like compression artefacts. How important all of this is will depend largely on the individual and how tolerant you are. For somebody like myself whose hobby used to be photography where image quality was something to be strived for, this level of compression is both disappointing and distracting, especially as quite often the magazines I’m buying tend to place great emphasis on the photography. However I would stress that not all pictures suffer these problems and quite often images will look fine at full-page magnification. The situation does seem to be changing as recent issues of National Geographic have increased to nearly 100 megabyte each. One can only hope that other publishers follow in their footsteps.

Viewed at full screen width the shortcomings of excessive file compression can be seen in the background of this photo.

Summing up

I had actually intended to write this follow-up article a couple of weeks after the first one. The fact that I didn’t because I was too busy actually reading some of the back issues of magazines I’ve purchased, is I guess a testament to how enjoyable an experience it is. Until recently I’ve felt ‘locked out’ of an area of reading that I particularly enjoyed and I’ve been keeping my fingers crossed that some enterprising company would come along and offer an electronic alternative. It isn’t perfect, but then what is? Image quality is variable at the moment, as is pricing (some magazine subscriptions are quite a bargain whilst others are ludicrously high). Also there currently appears to be no way of knowing how much progress you’ve made through the magazine as there is no progress bar or percentage complete indicator. Another strange omission is that the online reader has no bookmarking feature that I can find so each time you open the magazine it will revert back to page 1. One final gripe (and this isn’t directed solely at Zinio but just about every company that designs programs and web interfaces) is that not enough thought is given to physically disabled people and how they are going to access the features. I can just about make the software work but it would be so much easier if every control responded to a simple voice command. Ultimately however the convenience that electronic magazines give someone like me far outweighs the minor irritations. It is certainly a far superior solution to the big and bulky mechanical page turning devices that I was shown a couple of years ago. Looking at the system from a purely disabled point of view I have no hesitation in recommending the system.


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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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Construction Tail

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

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

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

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

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

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

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

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

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

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

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

Written, directed and edited by Mark

Shot on location (and so was the director)

No meerkats were harmed during the making of this photo story


This photo story has received a certificate rating of U

(universal, suitable for all)

May contain scenes of gross cuteness


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


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Play the Game!

It’s all Alison’s fault!  smile_regular About a year ago when she was still taking care of me she introduced me to a game called Farm Town that was just starting to make its presence known on Facebook. Up to this point I’d mainly been using the social website as a means to keep in touch with family and friends. So when Alison sent me an invite to join her in Farm Town I wasn’t sure what to make of it. After all, the whole concept of working a computerised version of a farm hardly sounded gripping. Little did I realise then how addictive it would turn out to be and how it would spawn a whole host of imitators, one of which appears to have totally eclipsed it and gone on to become the biggest game on Facebook.

Farm Town is one of the new generation of social games built around the industry standard Adobe Flash technology and designed to run within a web browser such as Internet Explorer, although to be more specific in this particular case it is designed to run inside Facebook, another web application. Delivering games in this fashion offers some distinct advantages over conventional distribution methods such as CDs, DVDs and downloads. For instance there is no program to install, configure, update or patch. The games themselves generally load very quickly, do not consume gigabytes of hard disk space, and hardware requirements are no more than you would use to browse the web. When looked at in this way it is easy to see their appeal, at least for the casual gamer whose expectations will not be the same as those of the hard-core gaming fraternity.

So what is Farm Town? Well basically it’s a game that simulates the workings of a farm albeit in a dumbed down fashion. There are fields to plough, seeds to sow, crops to harvest, and fruit to gather from trees. By necessity (i.e. a desire to build as large a user base as possible) the basic game mechanics are kept simple. Like so many other games Farm Town is split up into a multitude of levels which you progress through by accumulating experience points. These points can be earned by ploughing fields, sowing seeds and purchasing various decorations such as buildings. Harvesting crops yields coins which enable you to buy more seeds, decorations and land with the objective of reaching the highest level and the biggest farm. And for the artistically inclined there is plenty of opportunity to embellish your farm with animals, trees, buildings, fences, and rivers etc.

Now if all this was done in isolation I suspect that you would soon grow tired of it but social games by their very nature have an ace up their sleeve which of course is the interaction with other people. When the game is built within the very fabric of a social networking site such as Facebook you potentially have a ready-made group of participants in your ‘friends list’ which you can invite to be your neighbours. This then opens up the possibility of hiring your neighbours to work on your farm at harvest time, something that Alison, Francesca and I would often do in the evenings (oh yes, Francesca became just as hooked as the rest of us!). It was often a case of let’s meet up by the scarecrow under a full moon! But Farm Town has another little trick up its sleeve which is to allow you to interact with other players worldwide either in an informal surrounding such as the inn where players can just socialise or in the market where players can hire one another to perform work on their farm. It’s this social aspect that has proved very popular with the Facebook community. Gifting is another idea designed to maintain interest in the game. Players can select from a variety of gifts such as trees and animals etc and give them as gifts to neighbours. This was something that proved very popular in the early stages of the game when Alison, Francesca and I were trying to develop our farms. In the later stages of course its usefulness diminishes as by this time farms are probably overflowing with decorations.

From humble beginnings... crops of potatoes, tomatoes and rice. Anybody familiar with the 70s sitcom 'The Good Life' will recognise the significance of my avatar's name.

The store is where you buy things, in this case seeds. Choose wisely! Crops ready to harvest in the shortest times tend to yield the least coins when sold at the market.

Oh look, Francesca has come to visit me! Reaching a new level increases your options on what can be bought from the store and what you can gift to your neighbours.

It's harvest time and Francesca has come to lend a hand!

The fruits of our labour (pun intended!)

Francesca , don't you have a home to go to? Things are starting to take shape. We have a nice variety of crops, a good selection of trees, some animals and a few decorations.

Reaching certain levels allows the purchase of more land which means you can grow more crops and earn more coins.

This is how things looked shortly before I stopped playing Farm Town.

Home sweet home! A new feature introduced some months after launch was the ability to plant flowers.

So for a few months Farm Town provided a bit of free entertainment that was fun to play for an hour or so each day and provided a nice diversion from other more serious stuff. Alison, Francesca and I got some real laughs out of it as we each tried to outdo each other so I guess in that sense it succeeded. But games that are structured in such a way that all the new and exciting stuff is in the early stages when you are busy building an environment often reach a point where interest begins to tail off once you have acquired everything. But a copycat game would soon appear that would take the best bits of Farm Town, add in lots of new features, and a big dollop of fun and wrap the whole thing up in a set of crisper, more vibrant graphics. That game was FarmVille and it quickly became the number one game application on Facebook.

Apart from the fact that this game looks a generation on from Farm Town in its presentation and slickness, I would say its key reason for success lies in the fact that it is being updated on a weekly basis so there is always something new to see. A popular addition are the themed releases where seeds, decorations, buildings and animals etc are released to coincide with a calendar event (Christmas, St Valentine’s Day, St Patrick’s Day etc) or connected with farms in some way (country fairs, autumn). And in FarmVille players can interact with animals by milking cows, collecting wool from sheep, collecting eggs from chickens etc which was something sadly lacking in Farm Town. There are lots of awards and incentives to make the players feel like they have achieved something, and there is a big emphasis on fun in the style of graphics and humorous animations. For instance in the run up to Halloween last year they launched some Halloween themed farm decorations and amongst these was a gravestone and if you watched it long enough then occasionally the ghost of a cow could be seen floating skywards! Another example is the hot air balloon complete with a black sheep in the wicker basket, a decoration that was issued to commemorate a milestone in the number of players they had. All of this is a far cry from the straitlaced Farm Town and judging by the amount of people now playing the game it’s clear they have a winning formula.

FarmVille is an excellent example of the rising popularity of social websites as gaming platforms. The advantages are many but chief among these is the fact that the basic game is always free. They don’t require you to devote many hours at a single time, and instead you can just dip into them as you feel, play a little and then come back another day. I’m sure that the hard-core gamers out there would laugh at such simplistic games but it is important to remember that not everybody has the time, the inclination, or the physical ability to play the latest PC and game console titles. Games such as FarmVille fulfil the needs of the casual gamer.

Where they tend to make their money is in all the extra enhancements and decorations for which real cash is required. Now the cynic in me might say that before the game became very popular practically everything was free and that now it has over 80 million people playing it most of the new enhancements cost real money. But at the end of the day the basic game is still free and there is no pressure to part with real cash and buy the extras so it is still possible to have an enjoyable game with family and friends. Also it’s important to remember that somewhere along the line somebody has to pay for the running costs i.e. the servers, bandwidth, artists, and programmers so we can’t begrudge them for trying to recover their costs.

Sadly the disease has been steadily chipping away at my enjoyment of this game for some months now. A year ago I could quite comfortably navigate my way around the play area just as long as my arm was supported in an ergo rest. Now it’s a different story as month by month I grow ever more tired of fighting against the encroaching paralysis. The repetitive nature of the finger and arm movements that are required to ‘work the land’ often means performing the same physical task several hundred times in a row (depending on the size of farm and how much land has been allocated to farming). No wonder then that at times my fingers have almost stop working and it becomes impossible to do anything. So to try and overcome this problem I’ve been experimenting with controlling the game using my speech recognition software. Now in theory you could play the game in this manner, however you would need the patience of a saint and you would have to ask yourself if the enjoyment you got out of it justified the huge amount of time invested. Another option I’ve been looking at is controlling the mouse pointer using my foot switches and trackball. This is certainly a lot quicker than issuing verbal commands but once again the repetitive nature of the physical actions required soon start to tire my feet. At the moment I’ve adopted something of a hybrid solution by using a combination of voice commands and foot movements. In the long run I can see myself devoting more and more of the land to decorations such as wooded areas, water features and buildings. In other words anything that doesn’t require constantly reworking in the form of plough, sow and harvest. My days of farming are slowly drawing to a close.

Anyway, you’ll have to excuse me. It’s time to milk the cows and feed the chickens and I need to be up early tomorrow to plough the South field smile_regular.

On-screen help and crops ready for harvest as soon as you begin draw you into the game very quickly.

Same function but different name. Everything is bought in the market.

Neighbours can send gifts to one another which are held in the gift box until required.

Frequent rewards via a series of ribbons provide continued incentive to play the game.

Various pests such as crows, foxes, and gophers as well as weeds and leaves can be cleared from neighbours farms. Removing these pests earns a few extra coins.

There are several features in this shot pioneered by FarmVille: 1) commemorative decorations - the hot air balloon was issued to commemorate a milestone in the number of active users playing the game; 2) farm vehicles which are capable of working large areas of land instead of one plot at a time; 3) animals that transform e.g. an ugly duckling that will become a swan.

Some of the many different ribbons that can be awarded when certain tasks have been accomplished

A few examples of Farmville style humour: alien abduction cows and crop circles!

Flowers can be grown as crops which periodically generate 'perfect bunches' which can either be sold to other players or used to decorate your own farm.

Winter comes to FarmVille. A nice touch is that the land can be switched from green pastures to snow blanket. During the run-up to Christmas players were able to send mystery gifts to their neighbours that were wrapped up and couldn't be opened until the holiday season. As the amount of gifts accumulated the Christmas tree with its pile of presents beneath would grow larger in stages until the maximum amount of presents allowed was reached.


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Friday, February 19th 2010


You know what it’s like when something pops into your head and you think ‘why on earth didn’t I think of that before?’ Well I had a moment like that recently whilst browsing through pictures on the Internet. I stumbled on the image below and I thought ‘eureka’, the answer to my mobility problems! If it’s good enough for Pixar then it’s good enough for me, and (bonus) I weigh considerably less than a house so it must be relatively easy. Why on earth put up with clumsy wheelchairs limited to smooth flat surfaces when a leather harness worn around the chest and attached to a bunch of helium balloons would be so much better. Suddenly all the advantages began to unfold in front of me: I would be able to traverse gravel footpaths, grass fields, sandy beaches, as well as snow and ice. Hell, I could even glide across a river if I wanted! And all it would need is a gentle push periodically from my carer Why hadn’t anybody thought of this before, I wondered? The more I thought about it the more I admired the simplicity of it: no heavy wheelchair to lug around, just a bunch of colourful balloons that would bring joy to anyone who saw them. Maybe I could even use the balloons for advertising (a kind of float and promote) and earn some cash at the same time!

The inspiration behind a great idea in revolutionising disabled mobility! 🙂

But how many balloons would I require, I wondered? Some quick and dirty calculations suggested it would be more than I had for my birthday last year! What I needed was somebody who was good at sums and who better than my friend Stephen up at Cambridge University. I figured that somebody who was used to calculating the origins of the universe would have no trouble working out how many balloons it would take to lift a nine stone man. But the figures the good professor has come back with just don’t make any sense to me. Between you and me I think he’s got it all mixed up: instead of working out how many balloons would be required to lift my weight into the air, I think where he’s gone wrong is in trying to calculate the mass of the Earth so that it can be detached from my feet! It’s an easy mistake to make! smile_regular

Hang on a minute, I’ve just thought of something. As appealing as all the advantages are I’ve just thought of a few disadvantages such as having to consider wind speed, direction and rain. I’m now wondering am I just swapping one set of problems for another?

As you can tell we’re entering the silly season! smile_teeth

So much has been happening lately with the disease seemingly attacking me on multiple fronts and making life challenging that I thought it was high time I injected some humour back into the blog. MND may very well take away all my physical abilities but I still, thank goodness, have my sense of humour. And long may it continue.


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2 Years of Blogging!

Celebrating two years of publishing to the web!

I’m in a bit of a celebratory mood today (Monday 15th). My blog is two years old! smile_party Wow, has it really been that long since I started writing about my experiences? I guess so judging by the volume of posts that have accumulated. Revisiting that first post again did make me chuckle a bit when I stated that it was not my intention to write in a journal-like day-by-day fashion because of course that is exactly what has happened as the blog has gradually transformed itself over the past two years. In fact thinking about it further the blog postings have increased as the disease itself has progressed, which consequently led to more to write about.

Looking back I can now see that setting up the blog was one of the best things I did. It has become a surrogate for work allowing me to keep my mind active and to give me an outlet to be creative and in control of something. Why? Because it is important to appreciate that MND affects the body and not the mind so ultimately it will only be my mind that I have left. I therefore want to make sure that this part of me continues to get used. Perish the thought that my mind would ever lay idle alongside my body!

I’ve tried to keep the blog fresh looking by continually introducing new elements and looking to see what can be improved. What started out as a text-only blog with a gallery of photos has evolved into something with a higher degree of pictorial content; some taken direct from a digital camera, whilst others have been created by myself using a variety of clipart and graphical tools. It’s these kind of things that I enjoy doing although I have to admit that in recent months they are becoming increasingly difficult to do. Adding the sidebar with links to various resources was another attempt at expanding the scope of the blog and offering further information to those interested in delving deeper.

But the biggest change to the blog took place last summer, in fact without it I could not have continued posting in its current form. But it is also the most transparent change I’ve made as you can’t actually see it directly. I am of course referring to the transition from typing to dictation using speech recognition software. I started to get really worried halfway through last year about how I was going to control my computer. My hands and arms were becoming increasingly difficult to move and as the weeks went by I was able to type less and less sentences without feeling out of breath through the sheer effort of trying to fight against paralysis. In a bizarre way it was mimicking what had been happening to my legs i.e. as the weeks went by I was able to travel a shorter distance from the house. The Dragon Naturally Speaking software supplied by AbilityNet and kindly funded by the MND Association has enabled me to continue using my computer but now for about 95% of the time using only my voice (I’ve got my fingers firmly crossed that I don’t lose my voice!).

Last November to coincide with my second anniversary since diagnosis I launched my audio blog designed to run alongside the main one. These are basically audio versions of my text postings and will serve the purpose of highlighting any deterioration in my voice over time. And purely from a vanity point of view they’ll preserve a little part of me that hasn’t so far been affected by MND.

One immediate change that you will have noticed from early in the month is the inclusion of an introductory welcome piece, something which the blog has been sadly missing. I’ve also taken the opportunity to write a short piece on what motor neurone disease actually is. Both of these new pieces will sit directly ahead of the blog and will thus introduce myself and the aims of the blog, followed by an overview of the disease.

Hindsight of course is a wonderful thing and looking back over the blog in its entirety there are a few things which I wish I had done differently, started earlier or even added which I didn’t. For instance I really wish that I could have added photos of all the people I have met along the way. But the problem was always not having anyone around to take the pictures. Even now most of my carers are not very comfortable using my camera (apart from Francesca) so I’m still limited in terms of illustrating the blog. I also regret not starting the audio blog right back at the beginning. Even though my voice as such has not changed it would have shown that I didn’t take frequent pauses for breath in mid sentence as I’m now forced to do. One thing I never got round to doing but thought about a couple of years ago was buying a video camera. I had the idea of using it to document physical changes such as difficulty eating, drinking, writing, walking etc. It’s a pity I never followed up on this one really as nothing would illustrate these difficulties better than seeing a moving image.

As for the future the blog will continue for as long as I am able to control a computer in some fashion. There are other technologies out there which I have no need of for the moment but am aware of. As the disease continues to progress I shall be looking into these as I try to stay one step ahead.

And finally, I would like to thank everyone who comes to visit the blog, especially those who have been kind enough to offer feedback, advice and compliments. It really is very much appreciated so thank you very much.


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Homecare – the first year

A year ago last week the life of independence that I had always known began to draw to a close. The disease had reached a point where performing physical tasks such as cooking a meal for myself, or keeping the house clean, had become too difficult and energy consuming to continue. A care manager was assigned to me, my needs identified, and a care agency was called in to look after me. In the space of just one year my needs have considerably escalated to the point where there is little I can still do for myself. In those 12 months I have lost the ability to prepare any kind of food for myself, to wash and shave, dress and undress, or even to feed myself. Consequently my care package has grown from 14 hours/week to 38 1/2 hours/week, and from two calls a day to four calls a day, to keep up with it.

This first year has been a bit of a rollercoaster ride with its ups and downs of one moment perfect stability and the next complete chaos. I was checking back through my records the other day and I was perhaps little surprised to find that I have so far had a total of 25 carers looking after me. So much for the stability and continuity I was promised back at the beginning when in my naiveté I assumed that the people I had would always be with me. To some degree that is of course true as Francesca followed shortly afterwards by Ann have remained completely loyal to me and have gone on to become good friends as well.

The care industry can be a strange beast though. People don’t seem to stay in one place for very long and will swap and change agencies depending on where the work and money lies. Not so different from any other you might think. However carers can often work with zero hour contracts which enables agencies to dispense with staff at a moment’s notice if the work dries up. Of course it goes the other way as well meaning that a carer can just walk out if they find a better deal. So an environment is created which instils little in the way of loyalty. For the people like me on the receiving end of care it can be very disruptive. Just as you get to know a carer and develop a good working relationship and start to feel comfortable with them, they leave. It’s happened to me twice now, the first time was less than three months after I started having care when I lost my main carer when she decided to change over to nights. That was bad enough and a little upsetting but not the disaster it could have been as I had yet to transition to having my personal care done. The second time it happened was in June this year when I lost Alison. That was a real hammer blow that took about three months before it started showing signs of improvement. Alison had a wealth of experience, a good range of skills, experience of caring for people with MND, and a really friendly personality that I warmed to instantly. I still miss her even now and it has been my experience that finding such people that tick all the boxes are very rare indeed. Fortunately in recent weeks I have come across one such person, and Kim, like my other lovely carers, is proving invaluable with her wide range of skills and friendly nature.

Ann and Francesca have been simply amazing. Time and again they have gone out of their way to do nice things for me; special little treats that go beyond what is expected of a carer. Ann for instance is always treating me to cakes, collects my prescription every month and planted flowers in the containers by the front door so that there was a lovely splash of colour all through the summer. Francesca is very thoughtful and creative when preparing my meals and has been of tremendous help when it comes to people’s birthdays and there has been a need to shop for gifts and cards and have everything wrapped up and written out. And of course it has been Francesca that has been taking me out regularly since the spring. Like I say these are people that I treat as friends or even extended family. For instance at the weekends Francesca and I will often have breakfast together and chat away merrily. For me it is a chance to socialise and not feel so isolated which is what can happen now that I am removed from the workplace. I cannot stress too much the importance of having the right type of carers, particularly when living alone. MND is a terrible disease, no doubt about that, but even so it is possible to have a reasonable quality of life if you have a good support network.

In the year I’ve been having care I’ve got pretty good at spotting a good carer from a mediocre one fairly quickly. Fortunately I’ve not had any truly bad ones although I’ve had my fair share of mediocre ones; those who can’t cook, do a wet shave, make a bed properly, keep the kitchen clean, brush teeth or wash a person properly. There have also been those who seem to be short on common sense i.e. trying to light gas hobs through a glass plate cover, those who are dangerous i.e. hitting me in the teeth with a shower head, and those who are negligent i.e. leaving the front door wide open at night! By contrast the outstanding carers shine from the moment you meet them. These are the people that are capable of using their initiative and their common sense, of keeping a careful eye on their client and knowing when and how to intervene, they are thoughtful and considerate, have a wealth of experience which enables them to work without constant intervention so that you can just sit back and relax safe in the knowledge that things are getting done properly.

In one respect though I am lucky because I do have some say in who my carers are. This is not so with all agencies of course and sometimes you have to have who you’re given whether you like them or not. The agency I am with does to some degree try to accommodate me, so to ensure things run the way I want them to I work closely with the home care manager and at times have had a fair degree of input into shaping the care package. This has been how I’ve got all my best carers – by badgering the staff until they give in! If I didn’t I’d be surrounded by people who perhaps would not be suitable and feeling quite unhappy.

MND is a very complex disease and as such can place great demands on those who are caring for you. My care package had grown to a point where the three main carers I have are simply inadequate to cover the hours required or to provide cover in times of sickness or holidays. That much has been painfully obvious for the past few months so there is a pressing need to identify at least two more main carers so that we can lighten the load for the others and smooth out any disruptions. MND is also, thankfully, not that common so it’s no surprise really when a lot of the carers who come to me don’t even know what it is or even how it affects me. For this reason I think there is a real need for an MND awareness day course for carers, something which my own local hospice has hinted at doing.

So we end the first year of homecare with a care package that is showing signs of recovery after a bumpy four months. There are still a few problems to sort out particularly now that I have just gained a fourth call at the end of the day to put me to bed, which at the time of writing is still not in place as the agency is struggling to find people with enough availability. But hopefully we’ll have these problems ironed out soon. In the past year I have learnt how fragile my care package can be and how easily it is for things to go bad if even just one main carer is lost. As my needs continue to escalate, stability and consistency become ever more important. Fingers crossed that things continue to improve all the way down to Christmas.


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