1 year old today! – A year of blogging

1 year of blogging

Hello everyone.

It’s a bit of a special day for me today and one that I feel like celebrating :-D. A year ago I began publishing articles to my very own web space and made the first tentative steps into the world of blogging. Yes, my baby is one year old!

I used to think that blogging was a very strange activity. Why write about deeply personal things for the whole world to see which were really only relevant to family and friends anyway? And who on Earth would be bothered to read it? I know we have this obsession in modern day Western society to obsess over the lifestyles of the rich and famous but I am neither. What could I possibly contribute that would be interesting or informative?

Well it’s probably fair to say that had my life not headed off in the direction I find myself then I might never have bothered. But of course it was a diagnosis of MND that provided the catalyst and within a few months I found myself with a strong desire to document in some detail all the things I would experience. I did this partly for the benefit of my family & friends, but also because I wanted to share the experiences with a broader audience in the hope that they might prove useful to people in a similar situation as well as wanting to do my bit for raising awareness of what it means to have MND. Since doing so I’ve discovered that other people in similar situations are also telling their own stories and sharing experiences through their own blogs (a selection of those that I have come across can be found within the Favourites section of this blog’s front page). Such is the power of the Web these days that any individual can reach out and touch a vast number of people with minimal expenditure (compared to broadcasting or publishing). This sharing of information can often prove more useful then the cold hard facts presented in medical text books because it is written by people experiencing the disease so you get a much better understanding of what it might be like to actually live with it on a daily basis. It’s one thing to learn that dying nerve cells lead to paralysis and muscle wasting but for the non-medically trained amongst us it can be better understood I feel if described in the context of what it means to lose abilities and how we cope. And that is what my aim has been; not to elicit sympathy, but to put a human face on the cold harsh facts.

So here I am a year on from when it all started and I look back over what I have published so far feeling, dare I say it, rather ‘proud’. I just wish the subject could have been more light-hearted and fun although of course I’ve tried my best to inject some humour along the way. I suppose that in a different reality I would have found it enjoyable to combine my interests in travel, photography and writing into a blog as others have done. Nevertheless, as the months have passed so the blog has evolved with articles becoming more ambitious in size and scope. Those of you visiting on a regular basis will have noticed that all the latest blog articles are now preceded by an intro graphic to add visual interest and a splash of colour to what would otherwise be quite ‘text heavy’ articles. And I have to say I have great fun in creating them too!

In working on the blog I have gained an appreciation for how challenging it can be to constantly come up with new material and to try and write it in a readable and interesting fashion – and sometimes to a deadline too! I have tried to strike a balance between articles that focus on my deteriorating health and those that describe some of the things I get up to, because at the end of the day it is my family & friends, my hobbies and interests, and my hopes, fears & beliefs that define me as a person. MND just happens to be the medical condition that is trying to derail everything.

I know that my prose will never scale the literary heights and I dare say that those of you with a greater command of English Grammar probably shudder at some of the things I get up to. You would have thought that after living on this ball of rock for 48 revolutions that I would have gotten the knack of it by now, but oh no, it still eludes me. I’m always getting confused about when to use a colon vs. semi-colon, where to place comma’s, when to use numbers instead of words etc. I just use a scatter-gun approach and hope that some hit the target, hehe. I used to be the same at school; I would get top marks for story writing and ideas but terrible marks for spelling and grammar. But ultimately it is the content that is more important and as long as I can get my message across then I’ll be satisfied.

Over the past year I’ve read other people’s MND blogs, studied their style and update frequency and compared them with my own. I’ve concluded that the format I’ve adopted in which I only write articles on specific subjects as and when the need arises is the one that works best for me. Some folks update at far more regular intervals but I feel that the rate of disease progression in my particular case does not warrant it and so I shall continue for the time being updating approximately twice a month.

The Eagle eyed amongst you will have noticed that I have made a slight name change to the blog. ‘Fighting Motor Neurone Disease – One Day at a Time’ now becomes ‘Living with Motor Neurone Disease – One Day at a Time’. The reason for the change is that I felt the need to emphasise more the ‘living’ aspect rather than the stubbornness of fighting what is ultimately a futile battle anyway. Sorry, I know that sounds defeatist but don’t worry; I’m not giving in to the disease just realigning my priorities. Yes I can be stubborn and life is indeed worth fighting for, but at any cost? Well perhaps that’s for discussion in some far future article should my quality of life ever go through the floor. For now though I just feel very tired of constantly ‘fighting’ and yet still seeing my health continually decline. I just want to find ways to co-exist with the disease as much as I can and therefore I want my blog to reflect this. ‘Living with’ (MND) is still optimistic! And yes the web address remains the same.

I have much to thank this blog for. It has enabled me to channel my creative energies into something that not only keeps my mind active rather than just sitting around and stagnating, but also to provide a resource that will hopefully prove beneficial to others like myself. In fact in some ways it has become a surrogate for work as I’ve certainly not got to a point where I want to stop learning or contributing – I still have a keen interest in technology for example. I just want to do it on my own terms and at my own speed. More recently the addition of the ‘home-grown’ graphic elements preceding each article has to some small extent eased the pain of giving up on photography. So once again my blog has come to the rescue by providing an alternative!

There is one other reason why I continue on with the blog and that is a strong desire to ‘reach beyond my years’. I’ve been thinking lately about where computer technology might take us as a society, how it will shape and change us. People are now uploading more and more of their lives to the Internet through photo sites such as Flickr, social websites such as Facebook, and blog sites such as this one. Fast forward a hundred years for example and future generations will have a good idea of how their relatives lived through their photos, home movies and blogs. The Internet becomes the ultimate multimedia family tree! Just imagine if we could do that for our ancestors: “oh look, there’s a photo of my great-great-great-great…grandfather at Agincourt. He’s the guy at the back with his head down low dodging the arrows” :-D. So in a sense this blog will become my digital legacy and will continue to exist as invisible, non-tangible code buried deep inside silicon on a server somewhere in the world when I am but a distant memory. Yes, I write it to prove I was here. Even when all the people who knew me are also long gone, this blog will prove that I existed, and that I once lived on planet Earth.

Anyway, it keeps me out of mischief :-).

And finally (for now) I would like to take this opportunity to thank all my friends and family who have given positive encouragement and feedback on my blog. All the kind words have been very much appreciated. Thank you all so much for taking the time to visit me here. It means more then I can express in words.


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The digital book

I love reading and I love collecting books. I have done since childhood and consider the written word to be one of mankind’s greatest achievements with its ability to preserve information, whether it be for entertainment or knowledge, completely intact for future generations to enjoy. True, the English language itself, being a ‘living language’, will evolve over time but words that are written down remain unchanged and will never degrade, and in fact provide a snapshot of how the language was used at a particular point in time.

Over the years I have amassed a beautiful collection of both fiction and nonfiction books, but sadly it is becoming extremely difficult to access that collection as the muscle tissue in my hands and arms atrophies away and the paralysis creeps forward. I can no longer reach up to lift a hardback book off a shelf for instance, nor do I have the strength to hold it for long and instead have to rely on the help of others. But even when a book has been placed on a table I am still finding it extremely difficult to move my arms in such a way as to allow me to turn the pages. In fact I find myself having to keep standing up when I want to flip through the pages. An electro-mechanical page turner will hopefully be one answer – but they are not a perfect solution being big and bulky and requiring specialist setup. When I eventually acquire one of these beasts I’ll document my experiences of it in a separate blog article.

Sadly one of my favourite pastimes (browsing in a bookstore) has become impossible (unless I’m with someone) so where I still have a need for a physical book I’ll purchase it online (and then struggle like crazy to unwrap the parcel). For a person with upper limb disability the whole concept of digital books purchased over the Internet and downloaded to a lightweight portable device that can be taken anywhere is very appealing.

Last September Sony launched an electronic book (eBook) reader here in the UK called the Sony Reader PRS-505. It wasn’t the first to be released in this country but with the Sony brand name behind it as well as being competitively priced, it was probably the most high profile launch to date and captured the attention of the media. Having a brother that works for Sony and thus being able to take advantage of a special launch offer price for staff enabled me to ‘dip my toes’ as it were into the world of digital books for a minimal outlay and to see what all the fuss was about. So for this blog entry I thought I would do something a little different this time. I would write a product review based around my experiences and try to find answers to some of the questions I had about their suitability for a person with a physical disability. You see, you get everything on this blog; humour, travel, and now in-depth product reviews. I’m spoiling you, hehe.

The technology

So what is an eBook? Well put simply it’s really nothing more than a computer file containing all the text (and possibly illustrations) contained within a book. It is the hardware required to ‘read’ that file that determines how close an experience an eBook is to a real book. In truth eBooks have been around for quite some time but it is only in recent times that technology has evolved to a point that the whole experience of reading an electronic book has begun to approximate that of a physical book. Early eBooks relied on desktop or laptop computers running proprietary software. Apart from the whole issue of equipment at that time being huge, bulky and expensive there was also the problem that conventional display technologies such as CRT monitors and LCD screens were just not suitable for prolonged reading. PDA type devices were also capable of reading eBooks but suffered from poor battery life. I dabbled with the technology myself some years ago and got caught up in the hype and promises of a new way to read and so I downloaded a few eBook novels to try out but it wasn’t long before I found that flickering and overly bright displays soon lead to eye strain. Besides that it felt like a hugely unnatural and uncomfortable way to read a novel. The big breakthrough came with E Ink. Here was a display technology that created a stable, non-flickering image that was easy on the eye. Even better, it only required power to re-configure the E Ink into another pattern, in other words to ‘change pages’. Battery life improved significantly making the new generation of portable devices much more usable.

First impressions

Okay, so much for the technical background. What are these devices actually like? I was lucky to acquire one on the day the product was launched last year so have had a fair amount of time to play around with it. First impressions are that it is a stylish, sturdily built product which is surprisingly heavy (or at least it appears that way to me). The controls are quite small and require a fair amount of effort to depress which might be a problem a bit later on as my strength fades. Switching the product on and waiting for it to boot up and display a menu takes a surprisingly long time for a device primarily designed to display text. But when it is on the screen display is very impressive with the characters clearly and sharply defined, and although the screen’s background colour is not paper white like a good quality hardback book (it is more like the colour of a paperback ‘pulp’ novel), it is very ‘restful’ on the eyes and suffers none of the eye strain problems you get when sat in front of a computer screen. I have found that I can be reading from an E Ink screen for hours without getting a headache. Another thing that I noticed straight away is how quiet the Reader is. There are no obtrusive fans whirring away like on a computer to distract from the pleasure of reading.

The Sony Reader PRS505

Once switched on the device will automatically go into a power saving standby mode after a predefined amount of time. That was a bit confusing to me at first because the big advantage of E Ink displays is that they don’t consume power except when you change pages. But like all electrical products fitted with batteries it will if left to itself discharge naturally. Switching the device off completely will minimize power loss. The battery is factory fitted which could be a concern in the long term. I’ve no idea how long the battery would last or even how much it would cost but certainly don’t like the idea of sending off the Reader complete with all my books and then being without it for several weeks. But then again in this terribly wasteful fast-changing world of ours perhaps people will just take the opportunity to upgrade to a newer model.


If eBooks are to reach a broad audience then the whole process of using them needs to be extremely simple and not something that only the technically literate feel comfortable with. Thankfully setting up the Reader to enable the purchase of eBooks over the Internet was a quick and painless process which consisted of attaching the Reader via the supplied USB cable (also used to recharge the Reader’s battery) to a computer, which in my case is a laptop, and installing the software which came on a CD. There’s two pieces of software to install. One is the library management tool which enables organisation of all the books in your collection, the other is the dreaded DRM (Digital Rights Management) software which is designed to prevent unauthorised copying or lending. Once this had been installed it was necessary to ‘authorize’ the computer that will be used for purchasing eBooks. It was also necessary to authorize the Reader itself so that it can ‘unlock’ protected (i.e. DRM’d) books that are transferred to the device. Apparently you’re allowed to authorize a maximum of six devices on the one account which is sufficient for most families but woefully short if you have ideas of sharing your books with friends and work colleagues. Special note to Sony: in future please provide the printed instructions in a small stapled booklet and not on a single broadsheet that once opened up covers half my dining table. I struggled badly with my arms to unfold the paper.

Purchasing eBooks

The library management software offers a gateway into the Waterstones website, Sony’s official eBook partner, although there is nothing to stop you from shopping elsewhere. Purchasing eBooks will feel familiar to anyone used to shopping online. Basically you make your selection, place it in the shopping basket and go to the checkout. The only difference is that after payment you’re presented with a download link. The whole process is very slick and trouble free. It takes hardly any time to download an eBook (words, compared with video or music don’t consume much space) which is then automatically loaded into Adobe Digital Editions (the DRM software). You can if you wish read the eBooks directly from within this software but it’s not the most comfortable way to do so and defeats the object. One thing that did concern me was what would happen if you lost your Internet connection half way through a download? Well fortunately Waterstones allow you to go back into your account and re-download a book a certain number of times.

A view of the books that have been purchased and downloaded into Adobe Digital Editions – the software is designed to prevent unauthorised copying. Note that disappointingly some do not even have the book cover art

It is possible to read a book directly from the software

Transferring eBooks to the Reader

Having purchased an eBook and downloaded it to the PC there remains two albeit simple steps to complete before the Reader can be used. The first is to import the eBook into the library management software and the second is to drag the imported book title onto the Reader icon. This effectively creates a copy so you end up with the eBook on both the PC and the Reader, thus creating a backup copy.

Sony’s eBook library software used for organising and transferring eBooks to the Reader

Again there is an option to read an eBook directly if required

The reading experience

No matter how clever the technology or how appealing the product looks it will stand or fall on its ability to make reading a pleasurable experience. As an early generation product it’s not without its faults but to be honest they are fairly minor gripes and I would have to say that Sony have done a very good job with this product. One nice touch is that you can change the size of the text which is very useful for those with poor eyesight. The glass screen however is prone to bright spot reflections from nearby lights so some care is needed in where it’s positioned. I first noticed this when I placed it on the dining table and sat down to read. Raising one end up about 30 degrees by supporting it on a real book cured the problem. I’ve not tried using it outdoors yet so cannot comment on what it might be like on say the garden patio. Changing pages is also a little slow although probably no more so then when turning the pages on a real book. But it becomes more noticeable and intrusive when trying to quickly flick through the pages like you might do in a reference book.

One thing that does take a little getting used to with eBooks is losing the visual cues that a physical book gives you. For instance you can visually see how big a book is to read by judging its thickness, or how many more pages there are before the end of a chapter by quickly skipping ahead. Not so with an eBook that’s hidden inside silicon. All you get is a numerical representation e.g. page 1 of 300. But because a ‘page’ can be more than one page change on the Reader (depending on magnification) it can be confusing. Perhaps a ‘progress bar’ or pictorial representation might help. It would also be helpful if there was an author/title bar at the top/bottom of the screen.

A particular problem I have is that the muscles at the back of my neck are weakening which makes bending my head down to read from a flat surface a rather uncomfortable experience in quite a short space of time. I have tried sitting on the sofa where I can support my neck and with the Reader perched on a cushion on my lap but the paralysis in my arms is making it difficult to reach the controls which is why I’ve spent more time lately sitting at the dining table. One way to alleviate this would be to place the reader on a height adjustable vertical stand (like a book stand) that could be elevated to eye level. Only problem then is that I would be unable to raise my arms to reach the controls. The ideal solution would be to supply a wired remote control that connects to the Reader via the USB socket (sort of like a cable release on a camera). Then I could sit back and turn the pages by pressing a rocker switch on the hand-held remote. Come on Mr Sony, it’s hardly rocket science and would sure make life easier for us less physically able folks.

The advantages

With the ability to store about 160 books on the internal memory (and thousands more on expansion cards) and a battery capable of around 7000 page turns before recharging, the Reader offers some clear advantages in situations such as a stay in hospital, commuting to work, a business trip or a backpacking holiday where space and weight are at a premium. But even outside of these areas eBooks offer some major advantages: they don’t degrade, there are no pages to tear, crease or go yellow with age. And they offer the appeal of instant access to new books – see a book you like on the Internet; download it and start reading in minutes!

For the physically disabled there are all the additional benefits of zero handling required such as reaching up and lifting books off a shelf, carry them around, and turning the pages.


Perhaps not surprisingly for an embryonic technology there are some disadvantages and limitations. The one that becomes most apparent as soon as you pick up the device is a lack of colour which has become something of an expectation these days on consumer products. You can find it on mobile phones, on mp3 players and digital cameras. Sure, it’s in development and has been for some time, but until it arrives these devices are destined I feel to remain niche products. I suppose it could be argued that there is no need for colour if the Reader is only used as a replacement for paperback novels but even here colour could prove useful for browsing through book covers in a similar fashion to browsing album covers on an mp3 player. We assimilate pictorial information far quicker then textual information so navigation in this way would seem the natural way to go.

Just as saving shelf space could be seen as an advantage, having a home devoid of bookshelves could also be seen as a disadvantage. For booklovers such as myself part of the attraction of ownership is displaying your books. At the moment the idea of condensing an entire collection down to a portable device seems strange. But considering how quickly people have adapted to placing their entire music collection on mp3 players perhaps the advantages will outweigh such considerations.

One real limitation is the restrictions placed on what you can actually do with the eBooks once you’ve purchased them. Gone would be the days of exchanging or loaning them out to family or friends.


As with all new technologies it’s not cheap. The Reader itself although cheaper than competing models is still expensive so you’d need to be a fairly avid reader to justify one. The real problem arises from the cost of the eBooks themselves which are often more expensive than traditional books sold at supermarkets and online retailers. Why? Digital distribution should be cheaper because there are no trees to cut down and turn into paper, no printing plants to manufacture the books, no warehouses to store them in, no transport system to move them around and no shops to add their profit. Could it be that the publishing industry like the music and film industry just wants to make a large profit for little effort? Something else to consider is that without any physical stock sitting in warehouses growing old there is little incentive for discounts to make way for new stock.

eBook choice

On the run up to the product launch there had been media articles suggesting that Waterstones would launch with 25,000 titles. Great, I thought, more than enough to choose from to start my collection. But reality turned out rather different with only about 4600 on offer on the first day. Since then I’ve learnt that a product launch isn’t necessarily the first day but a defined period of time that could stretch into months. But even now about four months later there are still less than 7500 being offered. To make matters worse the choice of eBooks available is disjointed. For instance book 3 in a trilogy might be missing even though it was available as a paperback years ago. Or worse, books in the middle of a series are missing. Many of the well known authors whose books I read are either poorly represented or absent altogether and although I have a couple of shelves full of novels I’ve yet to read I’d be hard pressed to find any of them as eBooks. Okay there are millions of novels in the world and it would be unfair to expect them all to be available at launch, nevertheless I feel that Waterstones have not done enough to ensure this product was launched in a big way by offering a far more enticing selection. Because of this limited choice I have been forced to adopt a different purchasing strategy. Instead of going to the website with the specific intention of looking for a particular book I now browse through what is actually available and make my selection from these. This has lead me to experiment with authors whose books I might not have bothered with.

A confusion of formats

Perhaps it should come as no surprise to discover that there is more than one eBook format and although the Sony Reader is capable of reading some of them it cannot read all of them. Here we go again with another version of the format wars that does nothing but confuses the public and delay widespread adoption. I do wish these consumer electronics companies would work together. Fortunately the Sony Reader is capable of reading eBooks published in the new EPUB format (a sort of PDF for books) which it is hoped will become the standard. The problem is that other formats have been around for a while and have become established with a much larger selection of books.

The future

With music and more recently movies making the first tentative steps in giving up physical media and going the way of digital downloads it was only a matter of time before the publishing industry followed in their footsteps. But for eBooks to achieve mass market appeal and anywhere near the success of music it will still require some significant developments including colour, larger screens and flexible displays. Having a text to speech synthesiser built in could prove useful for studying new languages and learning correct pronunciation or for children learning to speak. Animation could also be useful in say illustrating the workings of a piece of machinery. Of course if you add all these features in you suddenly realise that you’ve just reinvented the computer!

At the moment with the current state of technology the emphasis is on replacing novels and that will be a hard enough market to crack but the real challenge will be when non-fiction books, magazines and newspapers all make the transition. Imagine an entire library of reading material on a flexible device offering high resolution colour. It will surely come but not quick enough for me.

Summing up

There’s a lot of hype surrounding eBooks at the moment and it’s all too easy to get carried away. There is however no denying some of the clear cut advantages they offer both for able and disabled people. But high prices, a confusion of formats and limited choice will I believe delay widespread adoption. For eBooks to truly succeed the technology needs to be completely transparent. Either have one format or equip all readers to read all formats. Books the world over are universally the same tech, eBooks need to be simple enough for everyone from children to old people.

One area of concern though is the regionalisation taking place. For some strange reason there are limitations on where you are allowed to purchase your eBooks. For instance it is not possible for a citizen living in the UK to purchase an eBook from the Sony US website which is very frustrating as their site offers a much wider choice. And yet I can buy a physical book from anywhere in the world!

Another concern is longevity. A paperback bought as a child can still be read by that same person when they have grown old. What chance is there that any electronic format will survive more than a decade or two? Will a library of expensive eBooks even be readable in years to come? Can they be passed on to future generations?

The Sony/Waterstones partnership has the market pretty much to itself at the moment so it will be interesting to see if it manages to obtain a strong foothold before the US invasion in the form of the Amazon Kindle arrives on our shores. They will only have themselves to blame if it doesn’t.

If it wasn’t for my disability I would be inclined to stay with paperback novels and wait for the technology to mature. It’s definitely the way forward; I’m convinced of that. But at present for all the reasons I’ve outlined above I believe it would be best to wait a while longer. But if we all take that stance then it leads to a chicken-and-egg situation; the public won’t buy the Readers so the publishers won’t invest in the market. It is being treated as a niche product like audio books when it could be so much more.


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