Sunday, January 23rd 2011

A good week

I’ve just come to the end of my first full week living downstairs. And what a difference it has made to my quality of life! With an easy access wet room adjacent to my bedroom I’ve been able to take advantage of having a shower and indeed a hair wash every day so far. The net result of which is that my skin and scalp are a lot healthier looking. After being denied a shower or bath for many months it is like a breath of fresh air being able to sit in my shower chair under a jet of water. Goodbye bed baths!

My carers are enjoying the new working environment too. There is a lot more room for them to move around, and this coupled with the new amenities has meant that some tasks can be performed a lot quicker in the morning. Consequently I’m now finding that I have more time to do the things I want to do in the mornings. And the same is true at the back end of the day. Because everything is now in closer proximity and the working environment is so much better, I can now stay up a little bit later as it doesn’t take so long to put me to bed.

The other big boost to my quality of life this week has of course been the ability to get out in the fresh air – the first time in about three months! All I’ve been able to do since leaving the hospice is stare at a computer screen and a plasterboard wall all day and catch daylight from a window in my peripheral vision. And although I look at a great many beautiful landscape photographs on the Internet it is no substitute for being there. Compare for instance a photograph of a harbour scene. That two-dimensional representation fails to capture the actual assault on the senses that you would get from being there, from the smells of salt water, raw fish and diesel oil, to the screech of seagulls overhead, from the heat of the sun on your skin and the feeling of wind in your hair, to the appetising smell of a nearby fish and chip shop and the sound of people and traffic nearby! No photo could ever hope to compare with that. And that is why I have longed to get out again. I have been looking forward to an assault on the senses once again!

Weather-wise it’s not been the best of weeks but by midweek the sun had come out to play and Kim wrapped me up in a similar set of winter accessories to my furry little friend (although I would hasten to add that I drew the line at wearing a tail warmer!) before setting off for a stroll around the housing estate. It was so lovely feeling fresh air on my face once again and being able to look up at a winter sun shining down from a clear blue sky. I have really missed the feeling of open spaces and am so glad that my year of confinement upstairs is now over. I’m convinced that it cannot be a good thing to be trapped in an artificial environment for all that time, both from a physical and mental perspective. After today I feel a lot more cheerful in myself. And long may it continue!

Before signing off I would like to say a big thank you to all my carers for everything they’ve done this past week, but in particular to Kim (for finally getting me out of the house) and Debbie (for all the running around she’s done on my behalf and for the lovely cooking – home-made corned beef hash – yummy)! Thanks girls.


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Monday, January 17th 2011


I had a couple of service engineers turn up at my door this morning to take a look at the hoist. Yes, the wonderful new ceiling track hoist broke down again yesterday morning at a most inopportune time leaving me stranded in bed for most of the day. We tried getting hold of a service engineer but as you can imagine these are hard to come by on a Sunday and the only one available was still working down on the south coast. I had to lie in bed and wait patiently until the middle of the afternoon before he turned up. But even after running various diagnostics and replacing a circuit board he still couldn’t get the system to charge, so all he could do as a temporary measure was to put another set of fresh batteries in the unit which it was hoped would be good enough to see us through until the Monday morning. Fortunately it did but by the time I got up yesterday there was hardly any time left to do anything before once again going back to bed. I get so frustrated at times at how dependent I have become and how something like this can cause me to lose so much precious time. All I could do yesterday was lie in bed and listen to music on a bedside radio. Better than nothing of course but my mind, unlike my body, still likes to do things, and a day in bed for me anyway is seen as a waste. Anyway fingers crossed that we won’t have any more problems because the service engineers have completely replaced the hoist unit with a brand-new straight out of the box one. It certainly sounds different to the last one and has a more reassuring pulsing light when charging the batteries.

I didn’t get an awful lot done this afternoon either because the builders turned up with a snagging list of little jobs to do around the extension which presumably had been picked up on the inspection I’d had recently. So with all the noise going on just behind me I contented myself by reading one of my downloaded e-novels and immersing myself in the gripping story. At times like this it is pointless even trying to dictate into my microphone because the background noise would simply confuse it. Anyway by the end of the afternoon the builders had left after completing all their tasks so hopefully everything should be fine now.


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Saturday, January 15th 2011

Settling in

I’ve been spending the time today enjoying my new surroundings and the large amount of open space I now have at my disposal. Upstairs it was very difficult manoeuvring the wheelchair around. There simply wasn’t enough clearance space and I’d lost count of the amount of times that the wheelchair rubbed up against a door frame. Downstairs it’s a different story and now that I’ve said goodbye to a few items of furniture my living room has plenty of room for both my wheelchair and the carers to move around in. Of course a couple of years ago the idea of disposing of some of my furniture to create a large open space for a wheelchair would have horrified me but now that I have reached this stage of the disease ‘needs must’. Certainly the options that have opened up to me now that I’m downstairs in this larger space have increased tremendously. I now have separate areas for eating, working, socialising, and being entertained. And when the weather picks up I’ll be able to make use of the level access patio. Already I can feel it lifting my spirits.

After a mid-morning coffee break spent looking out the French windows onto my back garden, which in itself was a refreshing change from having to eat and drink everything sat in front of my desk without a single change of scenery, I turned my attention to getting the computer set up because without that I would be helpless. Of course for a normal laptop it’s a five second job but mine has various hardware peripherals that need to be connected up as well although the real tricky part is actually getting everything set up at the right height and distance. So for instance the microphone needs to be carefully positioned in relation to my mouth and the foot controls need to be arranged at a certain distance from my feet if I am to be able to operate them without struggling too much. It’s all these minute adjustments that take time to get just right. Setting up a computer for a person with virtually no movement is the complete opposite to how you would go about it if you were physically able i.e. the hardware is positioned to suit the person rather than the other way round.

At the moment I don’t actually have a proper desk to put my computer on. For weeks I’ve been looking on the Internet for a suitable height adjustable desk. Ordinary desks are of no use to me as they are too low for wheelchair users and I can’t get my legs underneath. But height adjustable desks tend to be very expensive and I’ve yet to find one that is the right size for me. So for now I’m using a height adjustable over bed table, similar in design to the one I used for my computing needs at the hospice. It’s a bit cramped but other than that works quite well until I can come up with something better. I think I’m going to need someone with carpentry skills to build me something that will fit into the space I’ve got available.

Before signing off I want to say a big thank you to Suja for spending considerable time this morning getting my computer all set up and working correctly.


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Friday, January 14th 2011

Moving day!

The day I have been waiting for since goodness knows when has finally arrived. A couple of chaps from joint equipment services arrived first at midday to dismantle my profiling bed, carry it downstairs, and reassemble it in my new bedroom. Shortly afterwards a service engineer from Possum turned up to install an electronic door release system which is replacing the automatic door opener I’ve had for a couple of years. Whilst he was here I also managed to get him to set up a few other things for me that will make my life easier and a bit more ‘independent’. These include being able to operate the bedside light through a foot switch mounted on my bed and linked into the Possum unit.

At around 12:30 PM an ambulance crew of three men and one woman arrived to carry me downstairs. Kim, my carer, was on hand to do the transfers from my wheelchair to the stretcher chair (using the gantry hoist in my old bedroom upstairs) and then back again (using the ceiling track hoist in my new bedroom). Getting me downstairs went very smoothly but unfortunately my brand-new hoist stopped working halfway through being hoisted back into my wheelchair. Yes, the first time we ever use it and it breaks down! Fortunately it had an emergency cord which allows the hoist to be lowered, and it was only because of this that Kim was able to get me safely back into the wheelchair. My OT, who was also on hand, had to make an urgent call to get a service engineer out and fix it – pronto!

While we were waiting I got stuck into supervising the arrangement of various items of furniture in the living room. Now that I was downstairs and able to see for myself it was much easier to work out the best arrangement for making it ‘wheelchair friendly’ whilst maximising the usefulness of the available space. One thing I discarded straight away was the idea of setting up a small worktable in the bedroom adjacent to the bed specifically for the laptop. It had seemed like a good idea at the time as it enabled me to preserve a degree of privacy when working. I also thought that the smaller room might prove beneficial in keeping me warm. However that idea went straight out the window as soon as I could see the area for myself and how a small computer desk would intrude on the area required for my carer’s. Fortunately I’ve come up with a better idea and after enlisting Kim’s help to move some cupboards around I now have a nice area in the living room to work from.

The service engineer for the hoist turned up around 4:30 PM, discovered that the batteries were flat, and suggested that the hoist had not been ‘parked’ correctly. Because we had a definite need to use the hoist that evening to get me into bed he replaced the batteries with fully charged ones just in case the charging system wasn’t working correctly. He left us with the assurance that everything should be okay now. Hmmm we’ll see…

So what’s it like, now that I can see the extension for myself? In a word ‘lovely’! The bedroom has a nice cosy feel to it and it looks like it’s going to be a joy to work in for the carers. Okay, it’s not huge and there certainly won’t be room for a wardrobe so we’ll still be running up and down stairs for clothes but in all other respects it fulfils my requirements perfectly. Looking into the house from the extension really does make the house look a lot bigger though.

Before I sign off I would like to say a really big thank you to both Kim and Suja, who between them worked very hard today helping to get everything the way I wanted it.

And so here I am, downstairs at last. It is the conclusion of a long drawn out battle to maintain some quality of life. There had been times when I wondered if it was ever going to happen, and even if it did would it be too late to really benefit from it? But here I am and ready to take advantage of all the benefits my new location will offer. At the moment I am in high spirits. I have a brand-new purpose-built extension, and a care package full of lovely people that do so much for me. Fingers crossed that this will be a good year for me!


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Thursday, January 13th 2011

The countdown begins…

It’s the day before the big move. Yes I’m finally about to move downstairs into my new purpose-built extension. It’s been a bit of a funny old day really. You would think that after spending a year trapped upstairs I would be eager to get out of this confining environment. Well of course in many ways I am, but there is a tiny part of me that is going to miss being here. Because through necessity I have had to make the upstairs a sort of home-within-a-home, it has become a comforting environment. And up until now I’ve always known that I would eventually go back downstairs. But now that the time has finally arrived I am also only too well aware that I will never be able to return and there is a sort of finality to it that makes me feel uncomfortable. So before I turn the page and start a new chapter I worked in my study reading and writing for the last time, whilst tonight I shall sleep in my bedroom for the last time.

Fortunately this morning my mind was fully occupied with a visit from Peter who works for AbilityNet. He’d dropped in to demonstrate a hardware solution that he’d been working on that would allow me to control the mouse cursor using my mouth. At the moment I’m using my feet to operate 2 large button switches and a trackball which collectively simulate the operations of a mouse. Unfortunately, as I’ve already mentioned previously, my legs and feet are slowly paralysing, and it is becoming increasingly difficult to move them. The inexpensive home-made solution that Peter has come up with is rather ingenious. Basically it comprises of a PlayStation 2 game controller that is mounted on a Manfrotto adjustable arm and clamp which is attached to the edge of the desk. A piece of software called AutoHotKey is used to redefine the functions of the two main multi-direction jog buttons. We gave it a trial today and I was impressed by how easy it was to use. The only problem we had was that neither of the two Manfrotto mounting solutions that Peter had brought with him were long enough to reach from my desk to my face so until we’ve ironed out that problem I won’t be giving up on the foot controls. I shall be returning to this subject once we’ve got everything up and running and I shall let you know how it works on a day-to-day basis. One thing that has already piqued my interest are the possibilities that AutoHotKey offers to someone in my position. Being able to automate complex strings of keystrokes could save an awful lot of repetitive voice commands. Again this is something that I plan to take a further look at when I get a moment.

Okay, that’s about it for today. Time to switch off ready for tomorrow, I have a feeling it’s going to be a busy day. I have a lot buzzing around in my mind at the moment that’s making me a bit unsettled. I shall be okay once I’ve settled in to my new surroundings but for now I feel a bit apprehensive.


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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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Wednesday, January 5th 2011

Completion photos

Here at last are the final batch of photos of my home extension project. Quite a transformation from the previous batch I posted, don’t you think? This is how it looked on Boxing Day, two days after the builders had completed their work. As you can see it is now ready for occupation. Unfortunately I still haven’t been given a move date and there does seem to be a question hanging in the air over who is going to fund the three figure price tag attached to calling out an ambulance crew. I’m hoping to get some idea by the end of this week when a group of people including my OT and members of the council and the project management company call to do a buildings inspection. Hopefully (he says with fingers crossed) I should be downstairs by next week.

My thanks this time go to Suja for taking the lovely photos.

The bed alcove and ceiling track hoist. 26th December 2010

Sliding door partition into bathroom. 26th December 2010

My new bedroom and ceiling track hoist. 26th December 2010

Exit into the living room. 26th December 2010

Entrance to the bathroom/wet room. 26th December 2010

Showering area and amenities in bathroom/wet room. 26th December 2010

Clos-o-Mat shower toilet in bathroom/wet room. 26th December 2010

Stable doors 🙂 to shower area. 26th December 2010


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Happy New Year 2011

To my dear family and friends, both near and far, to my fellow PALS (people with ALS), and to those of you who have been kind enough to drop by, let me please wish you all a very happy New Year. May the year ahead bless you all with good health and many happy memories to look back on and cherish.

And let us pray for some significant progress in the field of medical science!


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